View Full Version : I go something like this.....

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05-23-2007, 09:14 PM
Top of head, dull pain. Underneath the skull. Feels full, swollen, inflamed like. Tylenol doesn't even make a pause in the blood pulsating through my skull.

Difficulty remembering. Times I forget if I was going upstairs or downstairs and what I was retrieving.

Once I got into the car and didn't remember if I was getting in or getting out.

Times while driving I forget where I am, like I am on the wrong street and never drove it before…but when I wake from that skipped in thought moment, usually it is the road on the way home.

I know, I know but I can’t find the words in my memory to say what I want..er, er..ah, ya know, that thing or to find things, that I swear was just there.

Or in my kitchen when I put dishes away, another hiccup in my memory, gee where does this go? I go to that cabinet, and to this one…nope, nope in a minute..oh, this is where she goes.

When I wake up. I feel like someone pushed me into wet cement and while I slept it set. Sleeping in the distorted position all night, without a turn. I feel hardened, stiff. I can feel my spine from the base of my skull to the end bone of my tail, like in the movie Predator. Like a tadpole tangling from his grip.

Nausea is prevalent. Toilets are for butts and not my face.

Stress just smothers any thought. Extreme stress in the home. The load is too heavy for one, let alone the one with Lupus. My husband is always in the sky, city to city, or in a taxi, building to building.

New place. New home. No support in the home. No support near. No friends. No family. My husband and I are on one coast while my friends and family are on the other.

My joints are stiff like a Barbie dolls’ rubber legs. You bend them but they never make that 90 degree angle. Aching like the pain of a tooth that had mistakenly chewed on the Juicy Fruit Gum foil wrapper.

Sometimes I can see the inflaming tissue in my thoughts, like the thin membrane on a turkey’s rib that has been cooked. I feel every bone, every joint from my jaw to my big toe.

Muscles ache as though someone is pushing on an already bruised spot. Location, at the connection to the bone, closer to the joint. Sometimes in the middle of the muscle, or I should say, the muscle that once was. Connective tissue, tendons? It is as though not enough oxygen is flowing though my blood to feed my muscles. Stretching temporarily relieves the pain but also increases joint pain. Between the two..Muscles..joints..humm..which one do I want to hurt less today?

My chest burns inside. I feel the pain all the way to my spine as though I was only one inch thick. Or is it my spine that makes my chest ache? GERD, which I was diagnose with or another herniated disk, as I had three, three spine surgeries? Right arm doesn’t have full range of motion without pain. Bicep and forearm affected. Spondylosis progressing? Or another symptom of Lou-Pus?

Eyes, with each blink feels like sand on cement with each high heel step. More red lines than that of the highway map in New Jersey. Feels as though my eyes are being pushed out from behind. The sockets ache with each darting look. I am wearing sunglasses as I type this as the LCD screen is burning my eyes. Sjogrens Syndrome. Show Grin, huh? Show him what? That I am drying from the inside out?

My face is like two land masses of rugged red terrain connected by a bridge. More like a pimply rash that needs to be dusted with Johnson and Johnson's butt powder and covered in a baby's diaper.

Energy? Isn’t that a name of a edible bar as I know no other, as I don’t think we had met. If, energy is what I spend rolling from one side to the other while in bed, I guess I met him for a brief moment in the night, he is the one then that gave me that small momentum to flip in bed.

This episode has been three months, it is getting old and as each day passes I am too a day older. Closer to the dirt than I am to a dance floor.

This is my story. I am 46. I haven’t been well since 2000. Two lumbar and one cervical spine surgery. Was waiting to recover from this last surgery 10 months ago, in hopes the end of back pain would be near. Instead…since 2000, while recoverying I was plagued with hives the size of dinner plates for 30 day stretches, rashes from ears to ankles. Laundry soap, dander, laxtex I wondered? Dizzy, blank stares, two by two, each joint would flare. Memory stutters, that I bought a NintendoDS to play BrainAge. I wondered for two years..is it menopause? No more eggs in this basket. Arthritis? New house making me ill? Allergic to cosmetics? Tried everyones’ from Lancome to Estee’ Lauder to K-mart Cover Girl.

I was stuck in the cement bed. I cried, I moaned and made my way to the doctors, filled vials of color me red and I drained the yellow me. Positive was bad, negative was good. Bad was good and good was bad, left me in a spin. ANA elevated, protein and bacteria was found in the cup. I was passed on to a Rheumatologist. More tests were done. Did I pass or fail when he uttered, Mrs. “Oluwa”, you have Lupus?

Does just being alive matter? I lost my creativity. Will I ever get better? This is the most I've done today, writing this..this ..this thing called my life.

05-24-2007, 02:02 AM
To answer you last question...yes life does matter. Why? Because you matter! We are all creations of God and I do not think that he created anything that does not matter!

I am so sorry that you are suffering so greatly and with such a myriad of symptoms. I know that many of us can identify with so many of your symptoms. The memory problems (I like to refer to them as 'brain farts'), the debilitating fatigue, the constant pain and inflammation, the horrific headaches, the swollen face; oh yes - too many of us have been there also.

I am sending you a cyber hug because I can feel, through your words, that you need one. I want you to know that you are not alone, please know that you can always come to us and someone will always be here to help you. I hope that you are able to find some relief from your symptoms or, at the very least, some understanding and compassion!

I wish you the very best
Peace and Blessings

05-24-2007, 03:28 AM
I am so sorry that you are having such a tough time! What a myriad of symptoms you are experiencing!! I hope you know that you definitely are not alone. I know how hard it is to pressforward sometimes. Manytimes I'd rather go back to bed and hide under the sheets than face the day. I know it is so much easier said than done, but do try to find some good in everyday, it will do wonders for your spirits & outlook on things. I have many of the same symptoms that you do, and I truly feel for you....its rough I know! You are in my thoughts and prayers.

05-24-2007, 06:43 AM
Thank you Saysusie and Ruth1908 for your words that are filled with compassion and encouragement!

Usually I am a strong one, but recently I've hit a really rough patch. Too many holes to in my path that I was bound to fall into one. In the dark, I cried alone. Perhaps, because my husband is out of town it gets magnified. This time alone it went from ant size to a tarantula. I wasn't lonesome, I became lonely. Felt all alone.

I know there is happy, I usually find it but yesterday I looked everywhere. In a snack, in a movie, in the warmth from my kitty. It wasn't here, it wasn't there. The wind was breezing through our screened porch. The sheer outdoor curtains sailed in the wind. I love the wind as it lifts my hair, listening to the trees' leaves shuttering in the air. Surely, this will cure the blues. I walked ever so lightly on my aching heels and sat myself down on the overstuff santee. It felt wonderful, but soon my body said it had enough.

I wanted more and when I couldn't I took to my bed and had pity for myself. Said this just can't be life....

Went to my space and sat at the PC, looking for help, any. Miracle foods, vitamins, homeopathy, someone...searched and surf and I found you.

This morning I took two pain stompers, coupled with Claritin to stop any allergic reactions.

I've made a list of anti-inflammatory foods, and those foods to avoid. I've scheduled a painter to color my space in a warm color as now it is a cool. Too bright. Feels like a neon light. I want something soft like a taupe with a splash of orange. I am getting geared to get myself out of this hole, gaining control over the situation.

Surely I will flounder about, as I tangle from this rope to get myself out. I will come here often, to encourage others like you have done for me and no doubt I will write more lines of woe is me. Sounds strange, but it is nice to meet someone like me. Who is not Lupus free.

I am sorry that you two have Lupus too and to all who come to visit this place in space, wehavelupus.com.

Thank you again. Squeeze, tight hugs....Oluwa

05-24-2007, 10:21 AM
I've been there, recently. I'm coming out of the dark myself but it isn't easy. I know the absence of a husband makes it that much harder to carry alone. The last hole was by far the darkest depths I've reached, so I'm trying anti-depressants. Even though they do nothing for the pain, the pain doesn't make me feel like I'm worthless and caught in a black hole forever.

I will be praying for you & all of us. I'll be on and off today if you need me I will try to respond quickly...


05-24-2007, 11:11 AM
Thank you, AB for including me, us in your prayers.

Still scaling the hole walls? Anti-depressants working, yet? How are you this day? Being depressed causes physical pain, so maybe when we can get our spirit in balance the aches and pains will lessen.

I use to be full of life, loved to cook for guests, tend the flower garden, swim, dance, paint, sew, read, social gatherings, travel, photography...but the downer for me, the words use to...

I've had to change up so many times, my lifestyle and with that goes friends. My travel is to the store, my cooking is slap it on the grill and my social gatherings is talking to my neighbors over the fence.

I'm just not ready to alter me again, but I will reluctantly accept the change and concentrate soley on halting this, this, this thing. Creating a regime of eats and activity and hopefully I can make it surrender, even if it is just for awhile.

My husband lands tonight, I told him earlier today I don't think he realizes what a sick girl I am and I need help. That is my fault because I always tried to keep a smile, toss a few pain pills back and pretend all is well. After our conversation I felt his hand, grabbing mine, tugging me, helping me out of the hole.

Are you on any special diet?
Do you have the facial rash? What do you use to keep it calm?
Any tips, tricks to make your body feel better?

I am just south of you, the other Carolina.

Keep well,

05-24-2007, 12:20 PM
I am still scaling the walls. It is starting to work slowly...at least the opaque veil is becoming more translucent. Today I feel tired. My pain is on the low end. I went to work earlier and came home because I was feeling myself getting sucked into the exhaustion, but I am also learning that just going in for an hour a day makes me feel like I've done something compared to the last few weeks that I've been bedridden.

I do not have the butterfly rash, what I do have is these horrible breakouts on either side of my chin. I've never had this before. They disgust me and they are all I see when I look in the mirror. I have tried everything short of going back to the dermatologist which will be one more doctor and dime, but if they can help me feel attractive again I think it might be worth it.

My husband is amazing, but he is learning how to deal with this the same as me. I wonder sometimes if he would have married me if he'd known I was going to be so broken...those are dark days indeed. More often I wonder if I would have married him if I had known he was going to have to take care of me physically so early in our marriage. He keeps me from falling off the edge and I can't imagine going through this alone, but it makes me sad that I'm not able to be more active. There are many things we have given up. We don't go to concerts or the movies. We rarely travel anywhere unless we will be there long enough for me to recover for the trip which leaves us little time to enjoy it. Most of all we don't spend nearly as much time at the beach. We both love the ocean, but I can't really do the sun anymore. Like I said it is hard, but we are learning together.

I looked for a support group in my area and they meet once a month in the middle of the day. I only recently (last week?) found this place myself so I'm very greatful for your post.

05-24-2007, 12:28 PM
Sorry, you asked about tips...

Rest when you have to, move when you can. Sometimes, for me, this is as little as my husband driving me to get gas with him. I don't have to get out of the car, but I do get out of the house.

DON'T make lists. This has been really important for me. I write something down when I think of doing it ONLY if I know I can do it now. I write it down, because I'll go to the bathroom and forget what I was working on, but I've found that lists just make me feel like I'm not doing enough, which leads to worthlessness all over again.

Ask for help. It is hard to be dependent. I've always been very strong and like you, I'd pop a pain pill and pretend I was okay, but I wasn't fooling anyone. My husband always knew but didn't want to push me into admitting it if that would make me feel worse. This is a partnership though and even if I can only bring my absolute love for him to the relationship I have to tell him what I'm feeling. This has gone a long way to helping me not feel worthless, because he says "Rest!" "Sit down, I'm happy to get it for you," etc and it is like we have given me permission to feel like crap with no guilt. I know I shouldn't need that, but aparently I do.

My life is not at all what I thought it would be, but this is my life and it is valuable (as is yours) I know I will continue to have good days and bad months, but I just try to enjoy the good ones to the fullest extent possible.

05-24-2007, 02:40 PM
AB, Oh, I feel the same about my marriage and use the word broken. Would we be married if we knew? We've been married for almost five years.

I feel guilty for "lazin' about", knowing he works hard so that is why I kept most of it to myself. Making myself feel somewhat less important. Maybe I didn't realize how ill I really am too . Now it is all out, all my ouches and grouches. I don't have to carry the load anymore, alone..I dumped it all out. He said if he can't be here, and traveling about, he will hire some outside help...i.e. cleaning service and outsource the laundry to a cleaners. It is funny, I didn't want him to feel bad, but in the end by not saying it long ago that I need help I did make him feel bad after all. Now we both feel guilty and in time it will be gone. He promised he will cut his travel when he gets back from his trip to India next month.

I do find if I did more than shuffle about that day, like planting a couple of trees. I am out for at least two to three days. Feeling as though I just did my first triathlon. Not that I ever did one, but I can only imagine the exhaustion.

That is great, I am happy to know you have found a support group in your area. I've searched the yellow pages and the Internet but to no avail. MUSC lists there are no support groups in the Lupus Foundation of America-South Carolina Chapter. They seem to have research groups, maybe I should check that out. But do I want to be a trial?

Lists, I don't do them like you. I have reminders of all the things I wanted to do near my desk, in my drawer, on my shelf, at my table. Pillows to be made, quilts to be finished, photos to be frame, drapes to purchase, walls to paint, canvas waiting for colors... We had our house built and move in almost a year ago. I am a self-proclaimed artist but now I feel like a blank slate board, unable to envision, Maybe it is the meds and it will pass.

For your chin, have you tried a product by Olay, Definity. A mild skin definer and light scrub? When my face isn't in a flaming flare this makes it look smooth and feels silky soft, but I still look like I have a mild sunburn. But when it is flaming, I can't find anything to make it feel stop feeling like a Halloween mask is glued to my skin. Tight and dry. My face does have good days, leaving me to feel attractive. Give it a try.

Does the palms of your hands and the heels of your feet ever ache? Mine does..

Thank you for chatting with me....
Keep well,

05-25-2007, 08:12 AM

I really appreciate your chatting with me as well! We have so much in common. I also am a self proclaimed artist. I write, or at least I used to. I've had a few things published and now I have a hard time stringing a single sentence together. I have more art supplies than I know what to do with all with a layer of dust because I just can't will myself to paint or draw.

This is our first marriage as well, my husband is 40 (I'm 30). We've been together for 7 married almost 8. We moved into our house (which was built for us) three years ago and the walls are the same color as when we moved in. Our upstairs is unfinished. We have unfinished bookshelves in our garage. All of the things I used to love to do, I don't have the energy or even spirit to do them. I also have quilt to be finished from years ago, my wedding photos haven't even been ordered (thoug they are digital so we have more time...because three years isn't enough) I don't have blinds in my Kitchen windows, because they have to be special ordered and fitted and I never know how I'm going to look or feel from one day to the next and blind makers don't come just beause you are having a "good" day.

I know when I read your initial post I thought, "This woman is close to giving up," but I'm so glad I wrote you because honestly, I believe we need to freely share those thoughts that so many of us have. I know it is thought of as taboo, but I think we all feel what you feel. At least I do.

Do you know the band Phish? My brother used to listen to them and after he died I got his collection. There is one song (Rift) that comes to mind all the time and especially when I read your post. Here are the beginning lyrics:

Last night, in the moments my thoughts were adrift
And coasting a terrace, approaching a rift
Through which I could spy several glimpses beneath
Of the darkness the light from above could not reach
I spied wings of reason, herself taking flight
And upon yonder precipice saw her alight
And glared back at me one last look of dismay
As if she were the last one she thought I'd betray

So much better I said to myself
And drawing quite close to the top of the shelf
I struggled with destiny upon the ledge
And gasped when defeated he slipped off the edge
And silence contagious in moments like these
Consumed me and strengthened my will to appease
The passion that sparked me one terrible night
And shocked and persuaded my soul to ignite

Anyway, I'm home today...to much hip pain to make it to the bathroom, much less my office. I'll try the Olay product and yes the souls and palms of my feet ache like I've been running marathons while simultaneously raking all of the yards in north carolina.


05-25-2007, 11:52 AM
Oluwa -

You okay today? I haven't heard from you and I'm worried...

05-26-2007, 12:50 PM
Hi AB,

Here I am. How are you? I did try, to post a message the other night but it kept saying invalid session, try again. I did and did again, but to no avail. Then my PC froze up and that was that of that message, so I shut-down and took a nap. Too much work for the mind, I chuckled

My husband landed the other day, so we have been sharing time together. Currently, he is outside caring for the lawn and I inside keeping cool. I find when outside for more than I few, my headache magnifies, from the already magnified headache from the Plaquenil.

I do feel hopeless and helpless at times. Feeling like there is no end to Lou-pus. It is there for keeps that I dread. I feel like it is a prison sentence. It was hard telling my husband and anyone else about the anquish I feel because I thought, especially with my husband he would feel sentenced too. In "Oluwa's" prison. I pretended and acted, but in the end it just made me angry and depressed.

But I feel better, dropped a bucket of tears on his lap. Oh, well, I got it, I got it and since the Lou-pus isn't going anywhere I realized I can try to control it. A goal. Keeping me focus on the positive, maintaining a balance.

We do have many things in common. So, we will have other things to talk about than IT.

Your home sounds like mine. Too whopped and indecisive to shop for drapes, curtains or blinds I order cheap roller shades from JCP and hung those up. Our plasma in the media room sits on the floor. Too sick to shop, those fluorescent lights do a number on me, and online fearing...what if I don't like it when I pull it out of the box. Money wasted on shipping. But I do like the undraped windows now. The bright sun illuminating the inside makes me feel good when I wake up. So, it does have some perks.

Wedding photos...same, same but for ours the photographer on Maui has the negatives. I was thinking, we should just make him an offer for the negatives and then we can decide whenever. I do find Lupus makes me so indecisive, how about you?

No, I do not know the band Phish...lovely lyrics, can be so true.

Published, how great is that. My friends, husband and family say I should write a book, something. I could never write a book, I would have nothing to say. My words are for the person I wrote them for, so that would hardly make a book. I do write poems, but never really shared. Once in while with my husband and a close brother. Like you, my feelings don't flow into words now. I just stare, without a thought. And all I am able to grab is, I hurt.

I have three quilts in a covered box. Oh, a needlepoint project too. India fabris for my pillows, strewn in a drawer. Today I was working on some black and white photos of our Magnolia's blooms that I took. Another project that will probably sit in a a pile. Indecisive, ah that word again, where would I hang them I ask myself. But I know I like the digitals I took.

My husband and I went and purchased the list of all the anti-inflammatory foods. From Flax-seed to Omega 3 eggs. I am feeling jazzed despite it all. I am doing good considering. How about you?

The last few days, I found if I take an Ultracet with Claritin just before bedtime I wake up feeling not as bad and another when I wake up. With the Plaquenal if I take it with plain yogurt and fresh raspberries my stomach feel pretty good too. I think with the malarial you have to keep a bit of something in the tummy at all times. I notice when I take it on an empty stomach it gives me a rush, like I feel the drug entering my system, then my head aches and nausea begins. How about you? Do you take a malarial?

Hip pain? Does it feel like a Thanksgiving bird's leg joint that is being twisted out of the socket? That pain is awful, especially when I am on my side.

Hope you day has been great...anything happening on Memorial Day? Us? Being home with a chunk of something on the grill. I will make some little yellow butter spuds. You have eaten them. They are about the one inch in diameter, buttery tasting naturally. I quarter them, tossed 'em with chives, thyme, minced garlic and olive oil and roast 'em in the oven. That is about as gourmet as I will get this weekend. Ah, I used to love to cook. Oh, there's that word again. Used to. But now, cooking has become just another chore. I'll have to find something else I can enjoy.

Enjoy your Saturday afternoon.

Keep well,

05-27-2007, 11:53 AM
I'm so glad to hear from you. I really was very worried. It has been a doozie of a weekend. The pain is as you describe, like a turkey leg being pulled and twisted in it's joint. I've been sitting in our den all weekend with a heating pad. My husband, too, did work in the yard. I went out to see what he had done and though the bright sun was beautiful, the heat made me sick.

I am on an malarial. I'm still working out which of the side effects come from that. I have the constant headache, but I've always eaten when I take it so mostly I just get sick if I'm in the heat for too long.

I do feel indecisive about everything. Committing to anything is difficult. I'm reading about six different books right now, I always feel accomplished when I finish one. I used to love to read. I still do, but I have to do it in spurts or I lose interest too quickly.

I'm doing much better today though. It really is great to hear from you. I love the flowers in the garden and I've been thinking of taking photos of our flowers in bloom as well, but I feel the same way...where would I put them? It makes me giggle a little to think where they would end up is keeping me from taking them at all. It is funny what makes me snicker at myself.

Everyone says the same about me, that I should write a book. I tried years ago before I got sick and even then the "forcing" myself to write everyday took more attention than I could muster. I think now that I was sick even then without a diagnosis, but who knows.

I want so badly to think of something interesting and non-IT related to talk about, but I just can't come out of it today. What part of SC do you live in? My husband went to High school in Lexington and we used to love to go to Charleston. We thought of marrying there, but my grandmother wasn't going to be able to make it so we switched to my home town of New Bern. I live in Raleigh and work for the General Assembly. I haven't worked much lately, but I'm trying to pull myself out of this hole and get back to it.

I'm a librarian by trade and have been desperately searching for a library job of any kind. It would certainly be less stressful than my current job and I believe that I would have more of a "team" to work with and maybe that would eliminate some of the guilt from missing work. I've been thinking a lot about finding out how to get disability. I know that up until now I have felt like that would be throwing in the towel, but I've never been as bad as I've been over the past month and I'm now thinking that I'd like to feel good enough to have a life and I'm not sure I can do both anymore.

I really do miss the art. It is amazing how much a part of my life it used to be.

Tomorrow we are grilling (I can't wait!) Your potatoes sound lovely. Anything with olive oil makes me happy though. My husband will grill some meat of his choice and I'll throw together a homemade salsa to put on top. I'll include mangos. I love the way they taste. They dance on my tongue and make me feel like the sun of summer has truly arived. :D

Have a wonderful day! When will your husband be leaving again?

05-28-2007, 06:20 AM
Hi Ab,

How are you this day?

I live west of Charleston..Summerville. Moved here from Seattle. Charleston area, Summerville is indeed lovely, with the Spanish Moss dangling from the Oaks. The beautiful porches. Everyone has been so kind, welcoming. Least favorite, the air can stink up something awful. Paper mill?

I miss Seattle and all its green, everything blooms. The mountains, the water, my family and friends. Know, I came here reluctantly but with support for my husband's career relocation to the eastern region of the U.S. So, I am here for a spell.

Chatting about IT anytime is fine with me. After my first post and letting it all hang out, I find it is good to talk about it. Especially with those who have been inflicted with this or another diagnosis. Helps one through the rough patch and to give us, me that one push to find hope, relief and perspective.

When the pain is so overwhelming, I find moist heat works best for it. I do the shower, hot as I can tolerate and just stand there, or sit on the bottom of the tub with your back facing the back wall and let it hit your back. I have one of those Water Pik Massage Head with hose. Wonderful purchase. I stop thinking about the pain and it usually lasts for a good while after I step out.

Secret...whisper...the endorphins from an orgasm diminishes the pain too. Natural pain killer, gives a person a sense of well being.

Social Security Disablity Income is an option. I think when one is on SSDI they should view it as temporary. Well, I say that because it leads one to believe they have to be ill to keep receiving. Well, they do lose the income when qualified as well but I mean that they give up getting well to secure that income. I have seen that happen to my sister, but for a different disease and you know her disease wasn't the reason she was approved. One can always find a doctor out there who will give you the "right" diagnose for SSDI. In her case, he did her a disservice, her world is now small. Going to and fro to the doctors to keep her file current. I know she is just one and for many it is a blessing to have that SSDI. Maybe SSDI will help to alleviate the stress, the time to bring it back undercontrol. Time to just take care of you and see how you feel afterwards.

I know when you file for SSDI and are denied, you appeal it with a lawyer and if approved the lawyer can only charge x amount of dollars. There is a cap on his fees. And you would recive "backpay" from the time you were denied till approved also. That is where he, lawyer gets his fees. If not approved, he doesn't get anything. My sister did it, but I think it took oh, about a year and half to two year process. I am not certain but it did seem like forever. I can ask her....

Mango salsa sounds yummy. I used an over ripe mango in a pineapple, upside down cake. That was goood too.

Today I feel pretty good. Mild aches today. My headache is dull, tolerable. Eyes are doing pretty good. Keeping the shades on.

When I type the shoulder, elbow and hand joints aches but I keep reminding myself, drop the shoulders down and back. A PT taught me that. She would tape my shoulder blades down, like as though they were broken chicken wings. I think I need to visit her again. Feels like I forgot the skill, the memory of how to tuck them in just right.

Enjoy the holiday with memories and thoughts of those we have lost, loved ones and soldiers.

Keep well,

05-31-2007, 06:21 AM

So, how goes life today? Wondering where you are.

More blooms fill our Magnolia, Crapes Myrtles are without buds. Days without rain, how about up there? Hopefully our contractor is still on schedule to dig a crater in our yard. In two weeks. In ground pool. They say it will look like a bomb went off in our yard for about 6 - 9 weeks. Staying cool with A/C....till then.

We were going to do the pool last year, but too much was going on with having a house built. One project was enough to keep our eyes on. It'll be great exercise for IT. Slather down with SPF 70, Magarita in hand and wait till the shade is on the pool, and I should be good to go.

Hoping is all good considering IT.

Keep well,

06-04-2007, 08:23 AM

I'm glad you posted last week and sorry I was unable too. I had migraines all last week and was in bed. My photosensitivity reached a point where my husband had to cover all of the windows in our room with material/sheets in order to get the room dark enough for me to not suffer. He stayed home with me for three days and my mother the other two. It is good to have a support system.

Today I am doing really well. I'm back at work and things are backed up, but not overwhelming. Thank you for the information on SSDI. I'm not sure if I will pursue it or not. I believe we could make it on my husbands income we just need to shift some things around (like health insurance) I'm not overly anxiuos to rely on them or even to quit my job. I actually love working when I'm well. It is just difficult not to feel like I'm not holding up my end of the bargain when I'm out as much as I have been in recent weeks.

I do hope you are well today! I am also exceedingly jealous of your in ground pool. My husband and I have talked about it. We both love the water, so it would make sense. Your "secret" made me laugh. The endorphins are an amazing thing!

As to the rain, we certainly had a ton this weekend. We have had drought conditions, but we live in a community with a well, so we have not had any watering restrictions. Our grass looks dreadful even with the evening soaking, but most of our garden seems to be fairing well. We have soaker hoses in the bed, so the water doesn't readily evaporate before the plants get the benefits. I have a hollyhock that just looks beyond belief. Eight foot stalks covered in a million flowers. It is really quite something to see right now!

I'll be around today (and hopefully the rest of the week) so if you write, I will respond :D

06-04-2007, 10:17 AM
Hi AB,

How's the workday going?

We also got dumped on with rain. Much needed. The sky clapped with thunder, my Jack Russell barked at the ceilings and I laid in bed jumping with each strike. Two days later, the sun is shining again. Humid.

Rough week, eh? Was there a trigger? It is great you are doing better. Those migraines can do a number on a person. Did it hurt more when you walked? Mine does. Throbbing more with each stride. Just imagining it I can feel the nausea they bring.

I didn't feel too swell this weekend. I usually avoid wheat products but it was my husband birthday and he loves carrot cake. So, I ordered him one and had a thin slice. Bloated city. I knew it would. The size of a basketball was under my skin and I get a mild case of delirium. Drunk like. It's weird the only wheat product I can consume is sourdough bread. I don't know why? Fermentation, perhaps?

Then the following day we went shopping. Wow, the neon. My eyes, my head, my stomach. I fled with one bag in tow and pretty much lounged around the rest of the weekend and moaned.

I wish this nausea would subside. When I take the malarial I eat plain yogurt, ground flax-seed and berries. It works for an hour then poof...green again.

Hey, I was wondering do people with Lupus get colds or better yet, do some stop getting them? Strange question but I haven't had a cold, flu, sinus problems..those types of things for I would say 15 years. You? It is a good thing. I can't imagine that on top of Lupus.

What were your first symptoms looking back on it? I think mine was, I started getting rashes, allergic to metal, soaps which gave me huge hives then nasal ulcers. Which by the way I always thought to be cold sores. But I had a culture done on them few years ago. Negative. Who knew Lupus ulcers...ewwwww it sounds so gross.

Keep well,

06-04-2007, 10:49 AM
Oluwa -

So far so good. I am still pretty upbeat, but I'm getting very very sleepy. I have florescent lights in my office and they make me feel off-balance. Very odd. I'm not sure if/what the trigger was for the migraines. My blood pressure has been especially low since I tapered off the prednisone (about two weeks ago), so it is possible they could have been triggered by that? My doctor is stumped. He seemed very nervous this morning that I might be displaying signs of Adrenal Insufficiency (I'm really glad I wrote this because I forgot to look this up and I meant to.)

I've had Fibromyalgia for years, so it is difficult to say what my first SLE symptoms were. I would say that the number of times my legs and hands (and bizarrely enough my face) fell asleep had definitely increased. The pain I've felt lately in my hips is something that I felt years ago when I was first diagnosed with FMS (mid-nineties), but had not felt since then really. It is completely possible that I had undiagnosed SLE way back then. I had all of the positive blood tests results even then, but I had a really awful rheumatologist so it is hard to tell if she just missed it. She is the one that told me I would likely never graduate from college or have any kind of career when I was 21 (at our second visit, no less).

Now I just feel like I'm rambling. So back to the question...Pins & Needles, absolute exhaustion while I was in my early twenties, and I believe I have vasculitis. Since I was 21, I have had these red splotches that do not blanch when you push on them just cover my lower legs (really really nasty looking) They would come on all of a sudden and take about a week to fade to purple and then go away. I've seen a number of doctors during an outbreak of the rash, but none of them has ever been able to figure out what they were. When I read the symptoms of lupus and looked at photos of vasculitis online I thought, "Finally, this is what it is!" (I had been trying to figure it out for around 9 years!) Unfortunately/Fortunately, they have not appeared again since I've been on the malarial. They usually appeared between once or twice a month, so my rheumatologist refuses to diagnose them. She also refused to send me to a dermatologist to have them checked out. My hematologist (who I love) sent me and of course I didn't have the rash. They are on stand-by until/if they appear again.

It really kind of ticks me off, because like I said I've had them for over nine years and I've never been able to get an absolute diagnosis. Now that I'm seeing doctors about 5 times a month, I don't have the rash anymore. On the other hand, it is really great not to have the nasty swollen rash!

I wish I knew what my triggers were. I know when I don't get enough sleep my symptoms are worse. I haven't really had any fried foods in quite awhile so I have no idea if that is a trigger for me. I don't eat a lot of carbs (some, but not a lot) so I'm not sure if they are a trigger or not. IT is all relatively new to me so I'm still in the figure it out stage. Right now I am only picking up on what is SLE based on how different or similar the pain is to my FMS.

When you type, does the center of your back burn? The muscles between my shoulder blades seem to seize up and I have to move around for temporary relieve. I'm a digital librarian, so I'm on the computer pretty much all day.

Oh, one more question. Do you see your eye doctor regularly? I've heard horror stories about the malerials making your eyes much worse, so I have an appointment with my eye doctor tomorrow. Any suggestions for questions to ask/things to make sure he knows?


(What is with me and the "...,so..." today? Can't I think of any other way to put anything! I'm having one of those my-brain-is-seriously-lagging-behind-my-desire-to-express-myself days.)

06-04-2007, 11:27 AM
Hi Ashley,

Oh yes, the burn, the pain between the blades. Times it throws me off, uncertain is it another herniated disk or joint related. Like am I slouching because of the joint shoulder pain, or tensing up from headaches or perhaps erogonomics. Bad height of my keyboard.

I was just researching on shoulder blade, posture supports, but they look painful. Like they would dig under the armpit.

I've had three herniated disk. Surgery on all. This last one they used donor bone to fill the spot where the disk once was and bolted it together with a titanium bracket. That is why I was confused with the symptoms of swallowing too. Reaction to the plate, I wondered or Sjorgen's Syndrome, drying out or still healing from the surgery. Doc says SS. When the neurosurgeon operated he did an anterior fusion for the cervical spine. Front entrance, so they push everything to one side to reach your spine. I've never felt the same. As they say, no one can duplicate God's work.

I get a hive right below my ear where the jaw meets. Trigger? Unknown, but I think it may occur when stressed. It swells up to the size of a quarter and oh about 1/3 inch high. Red all around. Starts out as a pea size, itches... then grows. I have never been able to show a doctor because it disappears before I can get in. So, I took a picture of it. Still unknown.

Is that how you spell itches...looks weird. Let me look it up. Oh, it is...I think I am going nuts. Brain farts as Saysusie says.

I've only been on Plaquenil for 30 days. Prednisone, 25 pounds later and a moon face I was still not well. I still tote those pounds around. Lounging doesn't help them to leave either. Being over weight does a number on my confidence. I was always a 6, now I am a 12. Yikes, and I am 46. Two strikes against losing these pounds quick. Pool can't come soon enough.

I have a treadmill, a ball, a bike...but all are difficult 95% of the time. Stretching burns little calories, 10 minute walk..nadda....and eating in bed...well, that isn't good either. So, what is a girl to do...my intake is around 1500 calories a day. From 1200 - 1800. Even fat girls get hungry I say to my husband and we laugh. I laugh to make it seem like I am okay with it. I'm not.

Being on it for just 30 days I haven't been to the opthamologist yet. My Rheumatologist recommends atleast every 6 months. Maybe I am on a low does of the malarial. I take 200mg twice daily. I really don't know what to ask. Maybe if any damage is occuring, it is permanen? Will it stop if I stop the malarial? What are the physical symptoms, if any that I would notice? If I do notice them, at what stage would the damage be at?

Ah..ah...that is all that comes to mind.

I am feeling weird too...disconnected right now, but I find if I try to focus on something intrique it helps.

Keep well,

06-04-2007, 12:53 PM
I've been on the Plaquenil for about 9 months, so we'll see. I don't know if the dosage is low, but you and I are on the same dose. It took me about 6 months on the malarial to come off the prednisone, but the lbs are coming off. I gained about 30 in that six month period and I'm down around 20 three months later.

I think the pool will be great for exercising. I have a treadmill, but I understand what you mean about it being difficult. I haven't felt like even doing five minutes on it since I started this most recent flare.

I'm only at work for another hour, so if you respond and don't hear from me, I'll try to write back at home.

Washington to South Carolina is a huge change. How long have you been in SC? How long do you think you'll stay? I've been in NC most of my life, but I moved from a small town to the capital and that has made a difference. I never thought that I would stay here, but life happens :? My husband has always been open to moving anywhere if I found a job that I really wanted to take, but I've interviewed in lots of places and the good jobs seem to be here right now. On the up side, my family is here so we have a lot of help if we need it.

06-04-2007, 01:10 PM
Hi Ashley,

Indeed, SC to Washington state is a vast difference. Much milder weather there. Here it has both extremes. Hot and Cold. Really laid back here and tail gate driving. It is all good though. We have been here over a year, on and off for the first 6 months. First arrived prior to the house being finished, but there was a delayed so we waited 4 months more before closing. Our builder, well, nothing really good to say there...

9 months, have you notice any difference in your symptoms? Please tell me yes.

Keep well,

06-04-2007, 01:53 PM
Yes. Well, sort of. My platelet count is up to normal and I do have more energy than I had. Like I said, this was my first really bad flare (since diagnosis), so I think it is helping the daily pain. Today for instance, I'm a little sore, but I've been sitting in a chair for more or less eight hours. I couldn't ordinarily do that. Oh, and I wasn't stiff when I woke up today. I seem to have a lot more good days than bad, but ask me again in a couple of weeks because I'm just now coming off a flare.

I do have days where I can go out with my husband or my friends and shop for an hour or two, or just walk around a park. I've also (up until this flare) been able to work out two times a week with a personal trainer. I'm not sure I could have done that before the plaquenil. I hear good and bad things on the boards about it, but I really have been able to tell a difference. It took three months for me to see any change at all whatsoever, so don't give up if you don't see a change yet. I'm heading home. I can't believe I made it till five today and I'm not even about to collapse. I'll check in later, but either way hopefully we'll talk later!

Have a good evening.


06-04-2007, 03:13 PM
Hi AB,

Oh, that is good news, coming out of a flare. Hope it is so. And a good day at work, Yeah! Hope tomorrow gets even better....

I do hope the malarial works for me. It gets old. I feel old. Older. I will wait patiently. I do notice some of the bumps are gone and some are smaller in the malar rash that masks my cheeks. Still pinkish red. My nose looks like I am a boozer without the big pores.

The Ultracet at night helps me with the stiffness in the morning. I can unfold quicker and it helps me to sleep through the night. Then I roll over and pop another to start my day. Just two Ultracets a day. I try not to use more, but I am sure I will have to up it because of tolerance if the pain doesn't subside. I can bear it for awhile. But it is mainly the elbows, feet and wrist that hurt the worse.

My tongue has been tingling lately, I would say a bit numb in the middle. Is that a nusiance affect of the malarial? What is it? I guess it could equate to have eaten something too hot. Or did I. Humm, now did I? I don't think so, my little buds aren't huge.

Oops, need to log out...the dinner bell is ringing, my husband.

Keep well,

06-05-2007, 02:32 PM
Hey Ashely,

How goes life today?

I can't begin to tell you how good I feel today. I feel so good, my eyes filled with tears. I haven't even felt this great when Lupus was hiding before. I am almost afraid to feel happy fearing it will end. You think it is the Plaquenil working? It has to be it. Heavens, I hope so. It is like listening for a pin to drop, feeling for what your body is doing..is it real...nothing to feel but a bit, a very bit of mild joint and muscle pain. That is it. For me, that is like 100%. Gosh, I hope I am not jinxing myself. That last flare was a doozie.

When I feel better everyone can hear it in my voice even if I don't mention it. When these good waves come, and this one is the best in 5 years, I think my family and husband think I am Sybil.

It is too weird, a good weird. Even my head feels clear. Gosh, do I go paint, sew, fly...I am tired of taking it easy. Oh, girl I hope you feel like this when your Lupus hides. I will say an extra prayer for you tonight, k...

I hope all is good and your day of work yesterday didn't do a number on you.

Keep well Ashley,

06-06-2007, 07:43 AM
Oluwa! I'm so happy for you. That is just spectacular news. Why are you even reading this? Go enjoy life :)

The plaquenil does make me feel like that when IT is hiding. Work made me very tired yesterday, but I'm in relatively little pain so all is well here. I'm back at work today and feeling pretty good. I'm even thinking of taking a brief walk today at lunch.

I understand the whole Sybil thing, sometimes I feel like her too when I am having a good day after so many bad. I can hear your happiness in your post. I'm just so thrilled for you. You should do it all! Paint, read, take photos, enjoy the outside! Whatever you can do, do it while you can.

I'll be around if you take a break from enjoying everything full steam...

I'm going to be mad if you do nothing today :( LOL, just kidding.


06-06-2007, 08:34 AM
Hey AB....

That is great work didn't wipe you out. I was wondering. Lunch time walk, sunshine...hope it will make your day ever greater.

In the morning yesterday I felt just okay. No headaches, very stiff though and felt like my body was still mashed into the bed. Tried to unfold myself and it wasn't till late afternoon I felt alive. Weird. Like poof, the sun dried up all the rain and I blossomed.

Started thumbing through my color chips, again for the gazillionth time...decided. I went to Lowes yesterday and picked up 2 gallons of paint. Wheatgrass and Burnted Copper. The Copper is for one of the guest rooms and the other is for mine.

I woke up this morning stiff, achey..but it past to a mild form. I am taking advantage of this "feel good, love me, woohooo" period. I popped a Ultracet and the Chlor-timeton, just incase...and currently, I am taking a break from painting my Activity Room....the room with mounds of gee, will I ever get to it projects.

I already cut-in the whole room and one wall down. Joy, joy, joy. I am not going to think about IT doing a sneak attack on me either.

Yesterday night, I modified some outdoor cushions I bought a while ago. The fell flat from day one. So, I gutted them...insert new foam wrapped in..oh, gee what is it. The word...ah..ah..banting?..gee that doesn't look right? But anyway, and had sewn them back together. Four.

Hey, does Plaquenil just decrease the flares and inbetween, when it is hiding in the bushes you have a better sense of well being? Does it minimize the symptoms when in a flare?

How was your eye appointment yesterday? How is your back today?

My husband flies out to NY just for the day tomorrow. Cutting back. He has been very kind, kinder I should say. Coddling. Checking in on me...maybe too much, but I won't complain. I prefer feast to famine.

Break is up...

Enjoy your walk...
Keep well,

06-06-2007, 12:58 PM
Hello! I never received a notice that you responded to my previous post, so I've only just noticed you wrote!

I just can't tell you how much of a pick-me-up it has been to hear you are doing so well! I am just so happy! Painting, that is very very cool. I was looking at some of my paint chips last night as well, maybe I will try to go buy the paint this weekend. I'm dying to get a fresh perspective on my room since I've been seeing so much of it LOL.

So the plaquenil seems to reduce my symptoms a great deal. I had an incredibly low platelet count when all of this got started and now I am completely in the normal zone which almost never happens after it has dropped as low as mine did. My daily pain is fairly low with some days virtually pain free. This comes in waves though. I was working out with a personal trainer twice a week before this last flare and that was something I completely attribute to the meds because I very rarely had to cancel or reschedule. I wasn't missing much work and even working longer hours. I definitely had more energy, so I would say, Yes it decreases the number of flares. Yes, I have a much much greater sense of well being when it is hiding in the bushes.

As far as reducing my symptoms during a flare, I don't know. I was in excruciating pain and had to be helped to the bathroom, couldn't stand for a shower or sit for a bath, so I had to do what my grandmother used to call a "bird bath" (i.e. soap and a wash cloth) Honestly it was pretty horrific, but like I said I've only been on the meds since September and it builds in your system, so it could get better. So I don't really have an answer for this...yet :)

The word you are searching for is batting (I called my mother, because I couldn't remember it either :) )

My eye appointment went fine. My Ophthalmologist was fairly annoyed that my Rheumatologist hadn't even suggested a vision field test or even mentioned that plaquenil can affect your vision/eye health. He recommends a vision field test every six months (covered by my insurance) to ensure that my eyes are healthy because the damage that can be caused by the plaquenil is NOT reversible so they have to catch it early. Many never have any effect on their eyes, but it is better to be sure by getting this test done (Have you had this? It is a 20 minute test where you have to click a little computer mouse thing every time you see a light on the screen? If this doesn't ring a bell, let me know and I'll try to describe it a little better than this.

My back today is much better. I did take a tramadol this morning and again at lunch, but I have been phenomenal today considering how much pain I was in last week. I'm up beat and though I could take a four hour nap, I'm not even thinking of closing my office desk and taking a nap in here (I thought about doing this a number of times yesterday)

My husband is also leaving Thursday to go out of town. He won't be back until Friday so I've put my mom on standby just in case. I'm actually going to her house for tea after work today. I haven't been able to do that in almost a month!

If I don't talk to you later, have a wonderful evening.

As a side note, I just want to thank you for everything. These conversations have meant so much to me and my mental health. I have to say I never expected to find this when I stumbled across this board.

06-07-2007, 08:26 AM
Hello Ashley,

Thank you to for talking with me. It makes me feel real. I have never met another with Lupus. Words on a screen can make life so much easier when you are ill, with someone that knows. I can use all kind of adjectives, metaphors but I think someone that doesn't have IT never quite gets it.

It is great to be where one can say just about anything, without wondering...do they think I am a
Hypochondriac? Lazy? Whiner? Gross?

My husband rarely gets ill. Stomach like iron. BM's daily. Normal ones at that. Sleeps like a rock. All things I am jealous of.

Isn't it crazy though.... can you believe it was like 2 weeks ago and I was worn out from pain, hope felt so far away. But here I am. Can the Plaquenil work this fast, 5 weeks? Do you think it is because I took all preservatives out of my diet? I ate pretty consciously as a whole before. Exceptions, I used to eat sweet cereal a few times a week, only because the healthy ones, Kashi and etc have wheat and I'd have ice cream, here and there. Okay and a chocolate bar once in awhile, Hersheys Plain. Now I cut out ham, beef and Ranch Dressing, powder mix. Increase the fruits to 4 daily, instead of fish 2 times a week, now 4. No rice. Chicken, scallops, crab, shrimp on the other days. Flaxseed, freshly ground in plain yogurt each morning with a handle full of berries. Soy milk instead of 1%. Vegetables have always filled my plate. I supplement with 2000mg of fish oil and a super B complex daily.

I painted the whoooooooole room. I "use" to be able to paint up a room in an afternoon, this one..all day event. Ashley, this last visit from IT, I never realize how weak it has left me in its wake. My painting tools feel so heavy. I mentioned it to my husband and he asked why did I cancel the painter. It makes me feel apart of something than just to be apart of TV, couch, kitchen, bed and the porch swing. The feel good is worth the weakness.

Though this morning took me 3 hours to unfold. My pain was different, like you described... I was sore. Probably because I hadn't lifted a thing in months and going up and down the ladder. My last wall, my arms and legs were shaking but I plowed through. I think I do have a herniated disk, just by the way my shoulder arm and hand feel. I know nerve pain from all my surgeries and I also I had Carpal Tunnel surgery 7 years ago. Popped 2.5 Ultracet, out like a light. Feel pretty good today. But I will keep it light.

I can't take anything with asprin, or like Voltaren, Aleve, Motrin because I have GERD. I use to take an acid pump inhibitor but being on Plaquenil I had to stop. It interacts with the malarial I guess. I should do a bit of research on that, because times my esophagus burns something awful, I get hiccups after I eat. But hey I will take that burn any day, all day instead of a flare.

I love your Grandma's expression. Bird bath, just too sweet. Me, when I was too ill to move and breathing was all I could do. Hells, I just let myself stink. :o

I didn't have a vision field test. But with more researching we should have had a baseline test to see where our eyes were prior to beginning treatment with the malarial. Sigh, I didn't. But it seems like sometime, somewhere in my life I did one. I was an Air Traffic Controller in the Navy eons ago, perhaps it was there...hummm.

You words on a screen makes me feel like I am not alone, alone with Lupus. Even though my husband, family ask, hey, how are you..it is just not same. Thank you for that. I am glad there is wehavelupus.com

What do you do as a digital librarian?

Keep well, hope you day at work is going good...enjoy tea at your Mom's.

06-07-2007, 11:58 AM
The whole room?!? That is excellent. I'm very jealous. I feel really quite well today. I slept through the night (only getting up once) which I think is a record. Tea with my mom was great. She and I are really started to get close again. We had some rough patches last year, but we are starting to have some really honest adult conversations (i.e. she treats me like an adult and I her, which hasn't really been the case in the past)

My husband and I spent a leisurely night at home last night afterward and he left this morning to go on his trip. Everything is really looking up.

To answer some of your questions, I started feeling better on the Plaquenil after about a month, but my exhaustion & some of my other symptoms were complicated by the prednisone. Oh wait, you are on prednisone, right? Anyway, the prednisone gave me a burst of energy (read as people thought I might be on speed) when I first started taking it, but quickly started wiping me out. I gained a ton of weight, started having terrible acne and really wild mood swings. As I tapered off the prednisone, things began to improve somewhat, but the mood swings increased as did my exhaustion level because my body was then going through withdrawal.

I think that your improvement could be in response to both the meds and the lifestyle changes. If you want to test it though, add a little bit of food back with preservatives and see if you see a change. For the most part I eat healthy, lots of fruits and vegies, chicken, seafood, all natural ingredients, fresh herbs, ORGANIC, etc. I have however had some junk without it affecting my remissions. For instance in February I had cake at my birthday which my mother-in-law gave me and I ate more or less a small slice a day. It had absolutely no effect on my health. I'm not encouraging you to eat poorly, but there are things you might not have to deprive yourself of if you don't have/want to.

Are you taking calcium? I take calcium supplements everyday because of the prednisone and my rheumy recommended that I continue with it even after the prednisone was finished. If you have switched to soy and don't take it, you might consider it.

The comments you made about your GERD are really interesting to me. I had severe heart burn & indigestion while on the Plaquenil and the Prednisone. It isn't nearly as bad now, but they put me on Nexium for about a month knowing what that I was on the other medications and it really helped. You should look into the drug interactions because I've never heard of anyone not being able to take GERD meds with Lupus meds.

It is pretty amazing how disparate the highs and lows are. I was in such a black hole about one or two weeks before I found this list serve and this last flare, even as miserable as the pain was, I still felt "normal" mentally and hopeful about coming out of it. It was excruciating and my husband and mother had to take off and take care of me and I did NOTHING, but I still felt like this wouldn't last forever. That is something that the plaquenil in combination with the Lexapro has done. My doctor thinks that as the plaquenil continues to build in my system, the lexapro will no longer be necessary.

One thing I've been meaning to ask is how is your hair quality? Mine has gotten so dry it is like straw and I've never had that before. It is naturally curly, so it has always had a tendency to frizz, but it has never been course and now it absolutely is.

Air Traffic Controller sounds pretty exciting! I'm relatively new to the library field, but as a digital librarian in my current position it is my responsibility to help my division organize all of their electronic information by creating standards and best practices, training on electronic organization and locating an out of the box program to meet their archival needs. I work for the State of North Carolina so our archival guidelines are very broad, but the information we produce has been amazingly ignored by the State Archives of North Carolina. Many of the people I work with are nearing retirement age and have spent their entire careers here. We are about to lose an enormous amount of institutional memory and there is currently no archive to even reference for the evolution of many of the agencies, programs, organizations or processes that are crucial for the continued progress of my organization. I'm the only person who does what I do and my position was only created last summer so there is a lot of pressure to get results, but also a lot of freedom to shape the project any way I see fit, because I am the only expert in my area in my agency. The downside is that I can get very very lonely with no one to exchange ideas with.

I know that was a long and sometimes convoluted explanation, but sometime when I'm not at work, I'll explain more clearly why I was not specific about some of the job details. :)

It is really great to read your responses. I know exactly what you mean about not having to try to pin down an exact way to describe IT so that others can understand. I don't have to come up with an analogy or a simile or a metaphor. I can just describe it, no matter how weird or gross or disturbing it is because I know you get it.

I had kind of a funny experience today I thought I'd share. I only recently started telling people I work with that I have IT. There is a guy that has absolutely no social skills at all whatsoever and today he stepped into my office and said, "So what's wrong with you?" No preamble. No working up to it. Just a flat out, "So what's wrong with you?" So I turned to him and said, "Lupus. And you?" :) I've been snickering about it all day. It is so great when I have a moment of clarity even if it only lasts a moment through the brain fog.

06-07-2007, 01:27 PM

Ugh...Do you have problems with logging in and posting messages? Sometimes I have to sign in 5 plus times before it will take. You? Hummm.

I wrote a reply, it requested another log-in after I wrote it..then it deleted it. $@#*&$!

Hey, I will write you another later today or this evening.

Enjoy the rest of the day. Will this one go through...Yikes..now it is saying invalid session..trying again..test, test, test...
Keep well,

06-08-2007, 08:42 AM
"And you?"...funny and quick too. Those clear moments are a real feel good when they cut their way through the pea soup fog. I am in a mild morning fog. I feel like my brain is coated. Probably because I woke up facing down with my face wedged into the pillow and I didn't suffocate. I slept hard. Must be that extra Ultracet.

Sleep well? Husband will be home today, eh? Mine arrived at 10:30PM. On schedule. Usually his flight out of NY is at least one hour late, then dinner is served closer to midnight. When I am not well, my mentally is how does he do it. Car, plane, taxi, taxi, plane, car. But I "use" to fly to Denver from Seattle weekly as my husband was working on a long term project there. It was easier for me to go to him, than him flying home every weekend. I kind of miss those days. In those days we had three places called home. Seattle. Fremont, CA and Denver. Long story. And now here we are in the Carolinas.

Yep, the whole room. And looks lovely indeed. I don't tape trim, so that is probably why I can whip out a room. This one though took me 13 hours. Oodles of breaks. Still feeling pretty good. Sore. Joints tight. Nausea left. Headaches, pale. Sciatic acting up, but that is my norm with it. My last lumbar surgery was classified as failed. Failed Back Syndrome (FBS). Scar tissue built up on the nerve or the surgeon may have nicked my nerve they had suggested. All are a guess, but the pain is real and the reflex is nil.

Hair. I know I had a hay bale during a flare from October - December 2006. Water, conditioner, nothing softened it. Then my hair started to fall out, lots more than the normal shedding. Then, February just before this last flare I could see a soft halo on top of my head, in the mirror under the bathroom light. 1/2" hair growing back. My hair didn't feel like hay anymore. Went to a franchise haircutters, feeling they could cut a straight line. Removed five inches, bringing my hair just past my shoulder. Making it look fuller and healthier. I have fine hair, but a fair amount.

Calcium. I hope I get enough from my foods. Fortified juices and greens. I stopped when I stopped the steroids. The prednisone, like you...too many mood swings. Irritable. Fat. Still am. Fat, that is. Okay, a bit irritable when IT doesn't leave me alone. I requested to be weaned off, the doctor didn't think it was a great idea, but we did. I just swallow Ultracet aka Tramadol and Plaquenil. And now and then Xanax. I noticed these last two days, nausea is at bay.

I know what you mean, mother-daughter relationship blossoming into two women, conversing. Adults, friends. My mother and I went like that. I'd shrink feeling like I was 6 years old when I was in my early twenties. Our life conversations began in my late twenties until her death. I was 33 when she past. Cancer. I miss her, always.

I am assuming with the GERD, and the prescription I was taking, Protonix would prevent the absorption of the malarial. I will ask my doctor on July 3. Next appointment.

Batting..I thought that, but my brain register the animal. The bat is batting around.

Hey, I am down to one bump on my face, but still pinkish red. Looks like I was in the sun with sunglasses on. White eyes, the lid that is...eyeballs still look like road maps from the SS.

Hope today is painless for you, if not do tell...Hey, have you checked out those posture supports for your upper back pain?

Crossing my fingers, hope this goes through and gets on the board the first try. I wised up. Typed it out with WORD first. Copy and paste.

Keep well, Ashley!

06-08-2007, 08:45 AM
Oh, now I know why it comes up invalid session, resubmit form. The system, the board times you out if you have been idle to long.

So, you have to log out, log back in and repost. Since my thoughts are slow, like today it is good that I use WORD.


06-11-2007, 07:33 AM

Sorry about the non-reply on Friday. I took the day off to recuperate from the full four days back at work. I think it was really wise. I saw my personal trainer this weekend (twice) which was actually better than I expected. I love her, but I haven't seen her close to a flare before so I wasn't sure how she'd react. We had two half hour sessions, which she handled by helping me stretch my most painful and stiff joints. It was a lot like physical therapy and I'm happy to report that my pain is ebbing away.

My mother came over this weekend and she and my husband worked in my front garden planting new flowers and weeding. It really is looking so much better and though I can't work in it myself right now, the flowers always make me smile.

My husband and I had a lovely Sunday. Nothing too strenuous, but we got lots of the mundane house stuff done. Last night we cooked dinner together and it was just lovely and peaceful.

I'm feeling much better mentally this week. I set up some appointments last week that I've been putting off. It is way past time for my annual and I am disgusted with my rhuematologist so I've been meaning to set up an appointment with a new one and I made that happen last week. I have many appointments coming up. I have the vision field test next week as well as a follow up with my GP. I have a rheumy appointment this week too.

I can't remember if I mentioned this before, but my husband and I missed celebrating our anniversary while I had my flare and we are celebrating this weekend. We can't decide where to go and didn't want to make advanced plans because my health is so uncertain, but I'm beginning to think it might be safe to pick a place now.

My hair seems to still be shedding, but the top is coming in softer which is a lovely change. It is really strange how quickly that happens. Last week completely straw this week, the top is soft. Maybe I just didn't notice the top was softening last week. When I read your message this morning I checked and it is softer :)

I'm glad your husband got back safely last week. It is so good to have a loving, supportive spouse around. I love being married. I never thought I would get married. Didn't really want to, I loved living alone. Then I met my husband. After all of the years I spent enjoying being alone, I never expected to find someone that would make me as happy as I was by myself. Does that sound crazy? All of my female friends were always searching for a husband. Most of my friends were guys, so I always had someone to go to the movies or dinner with, nothing complicated. I just never knew it could be like this.

As you can probably tell by the tone of my message, I'm in some sort of euphoric-nostalgic state today. I hope it lasts, it seems very peaceful, like a summer breeze.

Have a wonderful day. I'm at work today, so write when you like and I should be able to get back to you. I have to warn you though that I'm no longer getting notices when you post, so I just have to check in when I think about it. Sorry this post is so self involved. I thought about you a lot this weekend and hoped that you were having a pain-free, high spirits weekend.

06-11-2007, 02:13 PM
Hi Ashley,

Gee my mind is blank...weekend, ah what did I even do. I know I painted the guest room yesterday. Ah, not loving the color. But for the love of me, I can't temember. Gosh, how annoying.

Oh, swell, well today. I slept and slept some more. My upper body felt like it took a beating. Probably from painting. It felt good to feel almost normal, my normal even if it maybe short lived. I think the pain is movement related instead of just IT. I probably need to stretch more, warm up the muscles and joints, but I think my thinking is flawed. I fear if I warm the muscles and joints up, pain will follow before I am done. I dislike pain, natural instinct to avoid it even if my mind knows better.

Anniversary. Happy Belated....any ideas as to where? Our last, I was ill..the one prior we were on the move. This year we promised a vacation, tropical. Tenative, like you afraid to make a commitment. What if, what if...

I too never planned to wed nor did I not. Just never paid any attention to it. Though I had been asked on a few times, just never felt it was right. I suppose not because of who they were, but where my thoughts about me were. Not self absorbed, but I had felt the symptoms of IT long before I was diagnosed. Though I heard I was fun, funny, alive spirit, woohooo....I would have long drawn out weak days. Extreme fatigue I could imagine how my "drag" would pull someones spirit away and be stuck with me. It is easier to clock hours away sleeping while alone. Easier than to feel the guilt with someone home. I suppose that is why I never told my husband the extend my illnes had evolved into since being married.

I spoke of the pain...but not the despair. But here I am, doing okay. I believe hope, wanting better helps to keep IT at bay.

Happy to know your spirit is enjoying the summertime breeze and all is good. Enjoy. Today I went outside to see summer, smelling the fresh mowed lawns, pungent Gardenias, listening to children giggle and play...sipping iced sweet tea...ah what a day. Clouds are gray yellow, as the sun bounces off the full rain clouds. Rain may just fill the evening. Thunderstorm watch flashes on the screen.

My husband has another out and in flight to NY on Thursday.

Do you have any anmals? We have a Jack Russell and a miscellaneous cat. Huge. She can barely scale the flight of steps. Meow, meow..help me she seems to say, for when I see her she is only 1/3 of the way. So, I trot to her rescue. She is 17 1/2 pounds and her legs are like only 3 inches long. People ask, what is that..when they meet her. That is her, in the avatar by my name...

She has been on a prescribed diet, but she grows more, ounce, by ounce. My current vet, says that is just her. Unless she is sneaking people food in the night.

Have you ever tried acpuncture? Maybe I will give that a whirl. In Seattle, I had a wonderful therapist and she treated my lumbar. I was impressed with the results.

Oh, and no apology needed on time duration to reply...I would assume ailing or enjoying life. I will always hope it is the latter coupled with concern.

Keep feeling good Ashley...enjoy your evening.

06-12-2007, 05:53 AM
Oluwa -

It sounds like you've had a busy couple of days. I'm the same, (what to say, what to say).

I have a miscellaneous cat from my college apartment days of not wanting to subject a job to roommates or small spaces. Now we want a dog (desperately), but my husband is allergic and we are trying to figure out when he could begin allergy shots. She (my cat) will not be picked up, even though I've had her since kittenhood. She meows constantly and she hates a shut door. To keep our closet door closed at night we have to put a shoe in front of it. Otherwise, she puts a paw under and pulls it open. It is funny because recently I've been home and she has followed me everywhere. She wants to be petted while I'm in the bathroom. I tell her, "I don't bother you while you're in the litter box!" I've been doing that for about three months. Well she came into the bathroom about a week ago, saw what I was doing, meowed and quickly left as if to say, "Oh, excuse me! I thought you were just hanging out! My fault. Let me know when you are out!" She also will not sit in your lap unless your legs are covered with a blanket. My husband is certain she hates him, though when he is away she sits and stares at the door. The second she hears his car on the drive, she runs to hide and pretend she is indifferent. Very amusing.

I have my last rhuemy appointment today with the rheumatologist I do not like. I will talk to her about my flare and meds and see what she says, but I have an appointment with another in July.

I have not done acupuncture, but I've been considering it. There is actually a chiropractor here that aligns you for three appointments then does acupuncture for three. You are supposed to see him for this six week regime once a year. My personal trainer just went for her third six week treatment and she says she feels great.

Have you ever tried yoga or pilates? I have this dvd that only has a 20 minute relaxation session for the evening that is supposed to help you relax for bed. I've watched it, but not done it yet. I used to do pilates, but since I've been feeling worse I've dropped it. I know exactly what you mean about the anticipation of pain. I know that stretching would likely help, but I'm so afraid of making things worse I don't do it nearly enough.

Still feeling pretty good today. My shoulder hurt so bad last night I couldn't lift my arm, but that seems to be subsiding some. I'm at work...blah.

I keep meaning to write you while I'm at home to tell you more about that situation, but I just can't seem to remember. Perhaps I just block this place out of my mind once I leave. Yeah, that is probably it.

Feel well and pamper yourself today. You deserve it (I deserve it to, but I'll have to live vicariously today, because no time...)


06-12-2007, 12:56 PM

Having a great afternoon?

I tried to post on about a half hour ago, but ugh it wouldn't then it deleted it. I wasn't wise this time. I did not write it with WORD. Do you have that problem too? Leaves me frustrated, but it was for the better. It was a kind of gloomy post. With that frustration I did my 10 minute flexibly DVD. Better for it? Yes, indeed. I feel less weight on my spirit.

The DVDs, they are called 10 Minute Solutions. I have three...a workout with the Ball, pilates and just burn it up type of exercises. There is like 5, 10 minute workouts on each. Pick and chose, butt today, arms tomorrow. Or, go for the whole tamale. I just do the flex, stretch ones. Few days back I tried to balance on the ball, to strengthen my core, well, I rolled back, my husband grabbed my arm and I toppled over into the corner of the table. My shoulder socket hurt, and the indent much like the corner of our table marred my shoulder blade, which wasn't pleasant either. So, I let the air out of my ball. No, I didn't but I should've. The dog barks at it, wanting to play ball. My husband dribbles it like a basketball.

I had a restless night. Insomnia from pain, dark thoughts plagued my mind. Gee, a girl can't even paint. IT was assaulting me, mentally and physically. It isn't a flare. Feeling woe is me, into the dawn of day. Finally dozed off, after 2 Ultracets and rolled out at 10 AM. I re-evaluated my thoughts, and perhaps it isn't painting after all that has left me worn out like an old sole of a rubber shoe, but in fact that I am out of shape. And that is what turns my days into darkness easily. Exercise, exercise. I must, daily. Ah, a vicious circle, pain, depression, exercise, pain, depression..it will stop won't it? I need to stop the merry-go-around... I am getting dizzy.

I have to mind the doctor orders. Still working on them....

Stress free.
Sleep plenty.
Eat well.

Animals, pretty close to humans, we would like to think. Their favorite words from me are, "Who wants something good to eat?"....whether far or near, they come. I love them. They add a whole lot of good emotions to my day.

Have you ever watched The Dog Whisperer. Excellent program. He teaches owners and rehabilitates dogs. No bad dogs, just bad owners. My dog, maybe bias, but she is one of the good ones. Usually Jacks end up in rescue. Very spirited dog, who has to be taught gently. They are known to tear a house apart. Not for the docile owner. Thank goodness for my girl, she is 12 and doesn't need all that playing anymore. Thankful as my life has become so sedentary, I would feel so sad for her. Sometimes I just chase her about the house, looking like a lunatic from any outsider looking in. Popping out. Arms flailing about. Growling like a dog. She loves it. The cat is on looking, how odd. My husband asks, "are you okay?"....When I wasn't able to do much after my back surgeries that is how I gave her exercise. Weird or caring..hummm?

What kind of dog were you two considering?

How's the shoulder?...Knead it with the grips of your palms, not the finger tips. Keeps the blood flowing. Stimulates the muscle. I think the muscles get hard and not enough blood and oxygen gets through. Knead, knead, knead...

Do you get a rush feeling about a half hour or less from taking Plaquenil? I do.

Stretch you upper back, shoulders down and back and have a good afternoon and night...

Keep well,

06-13-2007, 11:32 AM

I keep checking for your posts and not getting them until the next day. For instance I checked when I got home from work and then again last night and there wasn't one. Then I come in today and your post was posted yesterday at around 12 noon. So odd. I don't usually get kicked out of a post, but I write it in the little box then highlight and copy it before submitting it, just in case. This is a technique I learned from a previous board I used.

Your pets sound fantastic. I love them, too. They do bring joy to our lives. My cat always knows when I need her to lie on my belly. It is so hypnotic. Her breathing and purring calm me right down and everything relaxes. Even if I'm in pain, things are always better when she is there.

I had my last rheumatologist visit yesterday and it went terribly. I was so disgusted when I left that I had absolutely no qualms about leaving her. She is so discompassionate and dismissive. I just don't know why anyone would continue to go to her. Everyone that sees her is in pain yet she has this tiny cramped uncomfortable waiting room and she is very brusque and not at all careful when examining my aching joints and body. She twists my wrist and lifts my knees like I'm a piece of meat. It is really really bizarre and I was just fed up when I left yesterday.

I'm sorry you are in pain. I'm really proud of you for giving the exercise a chance even though it is a vicious cycle. I think a lot of people just give up and sit around. I know I want to many days, but I do think it helps.
Why do we get the dark thoughts when we can't sleep? I can see the room become even darker as the shadow slips in through the window to cover my mind with self doubt and loathing. Misery at the "normal" life I may never lead. It is funny how uncertain I am about everything. How I can't make one solid decision on most days, yet when I have insomnia and I lie there, I'm so certain that I will never feel better.

I know I haven't been the most encouraging, but I do believe there are fluctuations in the symptoms. I totally believe that you will go into remission and I have met/talked to very few lupus patients who never had a remission. The merry-go-round stops and you are filled with some energy and a better outlook and slowly you feel like doing more things. Today I'm tired, but my pain is relatively low. I popped a tramadol this morning and my shoulder pain is minimal. I'm just very tired. Huge energy burst this morning, bright outlook, now...bed, please just give me bed! (You should know I am giggling about this a bit...I'm just very sleepy) I'll stay until I think if I stay longer I won't give myself enough time to get home before falling asleep and then I'll leave.

I have exciting news today and yet I'm not excited. I'm in a strange emotional place today. I told you I couldn't talk much about my job, but it is very stressful and I've been very unhappy. Well I had an interview this morning for a job I know I'll love because of the people and they told me they'd call my references and make me an offer as soon as they had done that. So I will likely get an offer tomorrow. The problem is, there are some changes going on there and I'm just to tired to even think about them. Like I said I know I love the people because I've collaborated with them for about a year now, but I'm feeling guilty about leaving here because they have been so great since I was diagnosed. I really thought I would be so happy and now I'm just kind of eh.

I get an energy buzz about an hour after I take my plaquenil, then I come down hard. It is evening out though.

I do hope you have a wonderful day. I'll stay another hour I think and make a break for it.


06-13-2007, 12:18 PM
Ashley…Oh, you are too encouraging, directly and indirectly. Directly, your words, having things in common and Lupus too and indirectly, by my replies to you. I do evaluate myself as I reply. So in turn, helping another I find helps me too…and vice versa…

I posted on another topic about SunBlock by Rit. I heard about it on Good Morning America. Check it out. I think, gee I forgot…in Lauri’s Lounge…ugh. I think. It is somewhere here…

Your former Doctor sounds horrid. I think bedside manner goes out the window when a dollar is at stake. Pump them in and churn them out. More patients means more moolah. Even if it is private business or not. Especially if it is a Medical Center I think they double book and churn out atleast 4-5 patients an hour is their goal. My GP does 3 an hour. I like him. Very tentative, gentle touch and ahem..younger than me. He is British or perhaps from South Africa. Gee, or I could be way off.

My Rheumatologist, I haven’t developed a personal profile on him yet. He is new to me, referred by my GP and I had only met with him twice. But know I don’t hesitate to “fire” anyone. I fired my neurosurgeon after my cervical (neck) spine fusion and sought another for my follow-up and therapy. I also dumped my last dentist, in search of another. I had great ones in Seattle. A good one is a hard find.

Be excited about the new position. Feel no guilt because someone has been good to you. We all should be good to one another. I am sure their being good to you wasn’t conditional. I would thank them graciously, without apologies and enjoy the step towards where you want to be. Celebrate this good thing…..

Hummm..I don’t know why it doesn’t show up, my post. I wonder if it has anything do with the GMT. I have mine set at GMT – 4 hours. Is yours? We are the same coast…check it out. But I don’t think that matters. Sometimes the site logs me out when I click submit…humm, maybe technical difficulties.

If I casually think, if that makes sense, in my head only I can not make a decision. But if I put it to paper, see figures, choices and etc in front of me. I am able to concentrate more and feel I am making a sound decision. But to flounder about in my own thoughts, in space, forget it. Too much work, to much, energy. Just too much work for my brain to categorize, remember, sort and etc.

I also find, my typing is awful prior to proof reading. And I still don’t catch my errors. Letters dropped off, letters transposed. And words that don’t even fit in the sentence. Weird. That just started to happen during this last big flare. It is like my fingers are dyslexic or perhaps my wiring is short circuited.

I cried a lot these past few days. Ugly cry or just eyes filling with tears. One thought has plagued my mind…humm should I type it? It is somewhat to your words… normal life I may never lead. But this maybe even darker. They say people with Lupus used to live only 3-5 years after being diagnosed in the 60’s but today a person with Lupus can expect to live a normal life span. The life span is normal, but is our lives ever? That swallows me whole ever time. Creates a fear of living and a fearing of dying, existence gone. I told you it was dark. Maybe I shouldn’t have typed it. But know it doesn’t mean I give up hope and live in despair. In a sense it gives the energy, the power to fight it. Like the DVD thing, eat right, rest. Down days are okay too. In a way they reenergize my thoughts.

On that…my post is becoming a book….

Enjoy your afternoon. Take bliss is the new prospect..job.
Keep well,

06-14-2007, 06:58 AM
Oluwa -

Thank you for your encouraging words and for the help and be helped statement. I feel the same way.

I too am having major typing issues. I use firefox as my browser and it usually tells me (by underlining a word in my post as I type) if I'm misspelling a word. That has become really helpful. Of course it doesn't know words like "rheumatologist" and I haven't yet tried to figure out how to add words to its dictionary. Anyway, I do appreciate the little editing it does for me :)

Please don't ever hesitate to tell me your dark thoughts. Three things I should share with you about myself...1. My brother committed suicide when I was 16 and he was 22. 2. My fathers best friend of 20 years OD'd on painkillers two years ago after suffering with lupus for 15 years. 3. I too have had the darkest of thoughts.

I mention all of these things because they are experiences of my own. I don't tell people that my brother committed suicide, but having gone through that and knowing the real impact on family, friends, life etc. It does keep me from thinking everyone would just be better off if they didn't have to take care of me. I know that no one is better off when that happens. Believe it or not, his suicide likely prevented my own (we had a very rough childhood)

My father was devastated when he lost his friend. She was only about 48 or 49 and even at this point it is unclear whether she was just desperately in pain and forgot when she had taken her medicine and accidentally took too much or whether she intentionally killed herself. She had been suffering for so long and the medicines were no longer helping. One thing is for sure, she did not swallow an entire bottle. She simply took a handful of pills over a relatively short period of time. The devastation to her daughter and the guilt she felt for not preventing this by doling out her mothers meds is horrific.

I thought about suicide a lot when I was young. As I said I had a horrific childhood. The desperation still creeps in, though this time due to the problems of IT. Nothing you could say would surprise me, but I hope that you would reach out if ever your dark thoughts felt as they were sucking you into the darkest places that we rarely speak about. I have to be honest. When you wrote your first post in this conversation, I felt your desperation. I knew those thoughts so well as my own that I was immediately concerned for your safety. I hoped that by writing you what has happened would. That we would become friends. Two people who can battle their illnesses together. I know my husband loves and supports me and there is no better support or love than his, but he will never completely understand how it feels and I know that you do.

I hate that you suffer, but your suffering makes my own easier somehow. I don't have to devise new analogies, no fumbling for words to describe the pain, despair or elation at being able to shower/dress/work when others think of these as everyday affairs. I know the journey ahead is a dark one because I've been in that dark places before, but I also know that there are many things to be thankful for. I look at my 86 year old grandmother and she tells me about her life experiences and I want to share my own with others when I reach that age.

When I turned 22 (the age of my brother when he died), I remember thinking now I'm going to be older than him. As my life has gone on and I've gotten married, graduated from college, bought a home, etc. I've always thought of him and all the life he missed out on. I don't want to miss out on those things in the future. Though I know pain will be my lonely companion, there is still so much joy to be experienced. Maybe not to the extent of my pre-IT life, but there is still joy to be had and no darkness lasts forever. No darkness lasts forever.

I'm going to send you a private message (I've never done that before so you'll have to confirm you get it) I will give you my phone number and if you ever need to use it please do. Maybe you won't ever need or want to, but keep it. I've had the same number for many years and I'm not expecting it to change. It will always be open. ALWAYS. If you ever need to reach out voice to voice, please consider calling me. I will be here. This isn't an intervention. I hear the perk in your voice that wasn't there when you first wrote, but chances are you will go back to that dark space and I'd rather you not sit around and wait for an online reply if you are desperate for support.

On a slightly lighter note, I've heard about a treatment called Orthogonal Chiropractics. I heard from a friend that many people go to see Dr. Sweats in Georgia from all over the world to assist in pain management/elimination. Have you ever heard of this? There are actually some certified Orthogonal Chiropractors in my area and the premise is they treat the whole body. Anyway let me know if you have any thoughts on this...

Today is gray here, perfect nap/curl up weather. I hope you are well.


06-14-2007, 11:37 AM
Hey Ashley,

My head is full of air today. Helium. Unnatural. I feel like I hadn't had a wink and indulged in a night of cocktails and beers. The combo. Though neither has happened and I slept quite well I am floating, disconnected. Fumbling for words. You probably know how long some of these post can take when concentration doesn't even seem like a real word. Concentration, concentration, after so many times of saying it, it doesn't sound like a word. A bunch of syllables. My concentration is riddle with errors, thoughts lost, sentences not finished. I am currently there, in that gap.

I know yesterday I had a strange attack. It felt like my insides, my trunk was filled up. Airtight. Shut. Spasm? A moment of paralysis? It started when I was laughing so hard, then I began to feel like a tube of toothpaste, being rolled up and squeezed. Like if you were to hold your breath and tighten your abdomen. My breathing was shallow. I began to panic. My eyes swelled with tears. I sat. I gasped. I could breath, but it felt too heavy. My voiced disappeared, then came out raspy. The weight lifted in about 10 minutes but my boozy voice lasted about an hour. And that was it. That is the second time that has happened. That happened oh about 7 PM and by 9 PM I was like wow, I feel good. I didn't feel the pain of being just there. You know, the constant gnaw of pain, letting us know it is always there. I felt it only if I made a fist or made a conscientious effort to find it and feel it.

Today I am back to "my normal". Aware of pain.

Sorry, about you brother. I couldn't imagine the heart pain, the wondering, the assuming, the questions, unanswered. Thoughts of ending it all have filtered through my mind, but when, like now, I try to recall those feeling they seem so far in the distance. Where they ought to be. Sometimes I don't think it is so much of dying we want. I think we just want new, here and now. Not off into the unknown. Just to wake up, the world is the same, but we are healthy. We even barter in our prayers. Sometimes I do. Sometimes I just stop and let God see me through, when he knows I can't endure that day. And sometimes I think he has forgotten me. Then too, I know it isn't true and realize I don't have it so bad after all.

I'll research Orthogonal Chiropractics. Gonal? I injected Gonal-F when we were doing invitro-fertilization. Two attempts both failed. Sometimes I wondered before being diagnosed with IT, was it all those fertility drugs that I injected and ingested that was making me ill?

Today, the weather is like my mood...sunny, with clouds coming and going. My body doesn't feel too shabby. Trying to find some mental stimulation. Do I want to sew, naw. Dye my hair. Humm... that is an idea. Has your hair changed color since dosing with Plaquenil? My husband and I think my is lightening up. My natural is a dark ash blonde. Dyed it is a medium ash blonde. Outgrow, roots aren't so visible when you go a shade lighter. But now it look like a golden blonde brown. The ends are pretty light, as if I had been sunning. I know they say it can bleach the hair. My eyebrows and lashes haven't changed. Humm..maybe more of my hair is turning gray. Now I got myself looking at it. Gee, scalp is dry too. Never had that before. New finds. almost weekly.

I guess I decided what I am going to do. Gosh, with it turning so light I hope it doesn't turn red. Red doesn't look good on me. I will add a drop of green or violet base color. I am off to color my tresses. Will I scream with horror when done....

Enjoy your afternoon....Oh, did your offer come through, yet? Job. Or still making you wait?

Keep well,

06-14-2007, 12:21 PM

No offer yet.

My hair is/was red my whole life. Since IT started amazingly it has gotten much more brown. The first time someone referred to my as a brunette I was depressed for days. I never knew being a redhead was part of my identity! LOL Anyway, since going on the plaquenil my hair has absolutely lightened up, but I also have more grays...I've never really died my hair, highlights everyone once in awhile which were always a disaster. I'm beginning to think a change might be nice. Do you do it at home? What are the good products? It is so funny to me because I've had my hair cut a million different ways because, well, it grows back. I've never been depressed by a bad haircut. Now I'm so nervous about changing the color. :)

I'm feeling really good this afternoon, comparatively. I went home at lunch to pick up my meds, which I think I mentioned earlier, I forgot to take. This is the first 3 o'clock I've seen in awhile that doesn't have me craving my bed. Don't get me wrong, I could lie down and take a nap right now, but I think I'm actually doing better. Getting home is not paramount. This is all making my spirits very high. Perhaps the energy is finally returning? (That would be grand!)

So your husband leaves today, right? I know you told me already, but when will he be back? My husband and I are either going to stay home this weekend or get up saturday and decide to go somewhere for the night. I'm sad I never was able to make definitive plans, but I'm trying to think of this as being more adventurous.

Is the brain fog strange? Last night at home, I felt like my head was full of water. So strange. I kept having to really think hard to come up with simple words. I kept referring to the spaghetti sauce as soup. It makes me feel like I'm talking crazy. The pressure was just unbelievable. Not pain exactly, but like I was having a hard time holding up my head because is was so full of liquid. I've had the helium head before to. It is no better.

Have a wonderful evening. I'll let you know if I ever hear anything.

06-14-2007, 02:16 PM
HI Ashley,

Red hair, is beautiful. My hair has always had green tone, ash. Like my skin, medium olive and my hazel green brown eyes. Green, green is all I'd see, especially when tanned years back. Now I am a washed out pale green. Too chicken to have another dye it. I started about 4 years ago, when my husband said oh, your hair has two colors. Wondering was that a hint and he knew or just unaware it was actually gray because it is so fine and most thought I had highlights. I just had a crop just above my temple.

I have a sister who has her own salon. Excellent hair designer I must say, though I hadn't had a sister cut in years. I miss it. Maybe on her visit down, she can give me a style. Right now it is one length. Times I layer it around my face, but when I need a straight trim I go to the nearest cheap place. Make a wrong cut into my fine hair and you can see the actual whack. I had that happen a few years ago. I looked like a mushroom head. My husband called me Ringo Starr. She thinned and layer so much at the ears I looked like I had a shag from the seventies. I wore hats for a year and uttered obscenities every time I looked in the mirror.

The color looks nice. No red orange undertones. I used to just highlight my hair with Ultra Pale Ash Blonde..maybe I will spice it up with a few pulls next week. I use a cap and pull it through with a small crochet hook. I use to buy from a professional supplier but now I just purchase my colors and developer from Sally's since being in S.C. . I now use the Wella line, and mix up a few colors. I don't deviate that much from my recipe. My ends still look light. Humm. Usually ends absorb the color quick. Next time I will add a few more minutes to the ends.

My husband was suppose to depart this morning but he told me last night he canceled his flight. It wasn't urgent that he go, so he conducted conference calls all day to NY and barely left his home office. Just for a few feedings.

My air head is gone. Actually feeling kind of light, good all over. Sybil again. I like it like this. Why can't it always be like this? I think I will make a picnic type of dinner on the screened porch. Potato Salad, his favorite. Sloppy Joes. Rachel Ray's recipe. And I, I love mozzarella, tomato, olive oil and fresh basil salad. Basil, that is the only herb I grow. One plant is the extent of my herb garden. Oh, I feel a good appetite coming.

Hope you enjoy your evening...sleep well. Tomorrow is Friday. Hope they don't leave you dangling over the weekend about the offer.

Keep well. Night.

06-15-2007, 12:04 PM

I missed my morning post because I came in a little late to discuss my offer while still at home. It is only a pseudo offer in that they are trying to make some budgetary shifts to get me more money, but it looks like I will either be starting the 29th, 15th, or August 1st. The position will be much lower stress, but still a really interesting project with lots of opportunities to do more if I feel up to it and not if I don't.

I'm doing so well today. My pain is actually so minimal that the tramadol is working to dull it. I'm not about to fall asleep and it is 3:00!!! This is quite possibly the most exciting part of my day so far. I met my husband for lunch. Everyone at work is in an excellent mood because it is Friday. In fact no one EVER wears casual clothes to work and today for no apparent reason, we almost all wore jeans :)

This is our anniversary celebration weekend. I'm feeling guilty because I pooped out on going out of town, but I think we are not going to tell anyone we are home and just snuggle in. We might go to a movie if I feel like sitting for that long. I'm thinking I can take a vicodin and a muscle relaxer and make it through, though I'm not sure I'll actually be able to focus on the movie if I do that! We'll wait and see.

I woke up today and if felt like the fog was burning off. I'm back to feeling pretty close to myself and that is making me a little euphoric. I love my life and my husband and my house and the people I work with and the trees and the flowers, etc. etc. etc.

I'm happy your husband canceled his trip. Did you do the dinner on the porch last night? It was a really great evening for it.

Well, my mother just called so I have to run. If I don't talk to you have, I hope you have a great low pain, high energy weekend.


06-15-2007, 02:38 PM
HI Ashley...

A lovely raining day it is. I ventured out of the home. Went to Publix, needed to stock up the fridge and cabinets this morning.

My husband and I went to a matinee shortly after I emptied the bags. Fantastic 4. He loves the movies. I was fatigued, but as a whole felt pretty good. My body envisioned a bed as I drove home from the grocer, but I didn't tell him. Instead while we were in the theatre I said I was cold, snuggled on his shoulder and I was out like a light. I think I clocked 45 minutes in the dark. Woke up just in time to see the end. I don't think he was knew. He felt loved, movie and his girl.

Other then being tired, I must say this is the best, even better than the last time I said it..my body has felt. Inside I feel like Cinderella at the ball. Just flowing, gliding and effortlessly in a gown. One word. Free. Gosh, I hope it lasts.

Sometimes Ultracet makes me irritable. Does it for you? Today I hadn't dosed. Yesterday just before bedtime I took two. I find when I take it before bedtime, I wake up I feel pretty good. Easier to unfold.

Wherever you go, whatever you do, what is important is that you two are enjoying one another. And too, tip the bubbly. Cheers. Enjoy your weekend.

For us...Lowes and a local plant nursery is on the weekend planner.

Keep well,

06-18-2007, 10:48 AM
Hello! We had such a good weekend. It was very relaxed, but us filled. Relaxed yesterday, then went to the movies...Ocean's 13. We enjoyed the first, hated the second and liked this one. It was better than the last not as good as the first.

I had a gp visit this morning. He was so happy to see me feeling so much better, he actually hugged me! It was very endearing. I've been going to him for almost 10 years and he really treats my husband and I like family.

I feel loads better today. Absolutely minimal pain. I'm sleepy, but not weary. Achy, but not even the kind that constantly pulls at your brain to fix. It is one of those where I sit in a certain position for a little while and think, "Boy my knee hurts" and so I move and then I forget about it until it hurts again...Do you know what I mean?

I got the final offer today at lunch and accepted. I have to meet with my boss this afternoon, which I'm sure will go fine, but I hate the anticipation!

Did you get to Lowe's? Pick up any good perenials at the nursery? My red hot pokers are starting to bloom, boy are they odd looking! But they have more pokers this year than last and the odd texture complements some of my softer flowers.

Do the Ultracet give you a headache? I find if I take one it doesn't do much for me. If I take one and a half it takes the edge off. If I take two the pain is lessened even more, but I'm left with a lingering, attention grabbing headache.

Hope you are having a lovely day!


06-20-2007, 06:39 AM
Oluwa -

Haven't heard from you since Friday. You okay?

06-20-2007, 12:34 PM
Hi Ashley...

Gee I started this on Monday and found it pending in my WORD "working on" file today. Oops. Gee, I must have lost a pea out of my pod. Pea brain because I don't remember what interrupted me, I felt like I posted it...Twilight Zone.

Here it is...

Hey Ashley,

Good for you, on your new career step. Congratulations.

Ocean 13 is the next movie along with Transformers is on my husband's list. Futuristic machines coming to life movies give me the willies. I still watch while cringing.

Nope, I didn't make it to Lowe's. Extremely fatigued. So, I shuttled about the house in my PJ's. I did vacuum and steamed clean the staircase. And flicked the switch on the Roomba and viola hardwoods cleaned. We have about 2000 sq ft of hardwood downstairs, so the Roomba is a joint saver. Then I polished them with a terry cloth mop. The Roomba works great on our carpeted upstairs, but usually my husband does it. He started to do the vacuuming after my second and third surgery.

I dabbled in my Pilates DVD a bit. I have to ensure it is apart of my day. It really does help. Gosh, I use to be very flexible, now I am like a plastic six pack soda holder. When it says, sit and stretch forward and touch your toes, sheeesh, I look like I am just sitting there. Like trying to bend steel.

No, I don't get a headache from Ultracet. Sounds like the headaches I would get from Demerol and morphine, pill form. After doing the staircase, all joints connected to my arms, and hands cried. So, I dosed with 2 Ultracets. Pain still survived that, another, then another. Finally after 5 in a five hour period I felt it disappear. Way too much dosing. Today, I feel good and no Ultracet taken. Yet.

Menopause oddity. I was always under the impression from reads that if one doesn't have menses for one year, you are post menopause. Gee, I woke up to a surprise. I'll have to schedule an appointment. Gosh, I am so tired of being, poked, x-ray, probed and etc. Another thing to add to my ick is me list. It is concerning because bleeding after one year without menses, post menopause is abnormal....sigh. I hope I just forgot to annotate a cycle.


When do you start you new job? Your current boss said...?

I read on another thread, about wanting children. Don't be afraid. I believe you will always find a way to ensure your fears are not felt. Nap when the baby naps. Set alarms. Hells, two...intercoms, telephones, Mom, friends, late shift nurse/nanny. Post depression. Ensure all around can recognize the smallest symptoms and ensure you would get proper treatment if needed. Inform your doctor, ob-gyn of your PPD concerns. The fears listed can be over come with many means...but the sad, with regret wondering, if only, I should have had a child can't always be. The latter is what I feel. Adoption, donor eggs is there for us..I think about it, researched it but my husband is not ready for that avenue. Times I feel he is being unfair. It was the sperm quality, very low that had us trying IVF. Our chances to conceive naturally was like 5%..but now, time has slipped away and my basket is "supposedly" empty..hummm

I was in a bit of a funk yesterday and today. Maybe thinking about my menses, menopause, childless has left me in this funk. Too much thinking.

I still feel IT hanging around, making it's present known lightly. Ache here and there...yawning...

I plan to prime the walls in the guest room and start anew. At first I loved the guest room color, then I didn't, then I did...now I don't. Egads. Notice I said the word plan. I must. I will to get me out of this funk. Maybe another shower, some music will get me charged. Okay, that is the plan. I am off....gosh I hope I don't fizzle.

Enjoy your night...
Keep well,

06-20-2007, 12:35 PM
Same post as above...I deleted this one.

06-22-2007, 06:59 AM

It is good to see your type!

Job...My boss here was great. He understands how the stress of this job is likely causing a lot of my stress and therefore my flare. Though I don't think he would ever actually say it, I know he must feel some sort of relief as well. Everyone has been very kind about my leaving. I actually start my new job a week from today. It is another state job so if I want to get the raise listed in our new budget I have to start before the first of July. This will happen and then I'm hoping to take a few days for myself the following week, but we will see. I know all of the people I'll be working with so there is little pressure. It is a bit of a pay cut, but I'm really not ready to give up work and the lower stress levels will be totally worth the very slight cut in pay.

I want a roomba! I don't know what has prevented me from going to get one. I guess when the weekend comes around and I have the energy to do something, I've forgotten that a roomba is on my list. I'm hoping for a very relaxed weekend this weekend. I'm trying to very slowly go through some old boxes in our attic so that we can have a yard sale. We have an unfinished upstairs that was postponed when I went back to school, but now I've been out for a year and it is time to clear out that space and get things rolling.

My mother has three sisters and our family has a history of early menopause. They all had menses after the time when they were supposed to be done. They would go 12-14 months with nothing then have a full fledged period then nothing for another six months, etc. etc. They always had regular physicals, but eventually it stopped all together. They were told that it varies so widely that it is very hard to predict what is normal and what is not.

I appreciate your kind words on the pregnancy front. Like I said, I think all women have the fears I have about having a baby, but it has just been on my mind a lot because my doctor has put a limit on when I can begin trying. I know my husband/family will help and keep an eye on my moods, etc. If we are unable to conceive (which my husband is convinced of because I'm 30 and he is 40 and neither of us has had so much as a scare in all our sexually active lives), we will consider adoption. I think I'm a little more open to this than he is, but I believe it is because he is not ready to admit that it may not be possible to conceive/carry to full term. My mood on the topic waxes and wanes. Like everything else in my life, some days I feel certain that all will work out and others I feel doomed.

I'm still very jealous of your painting. I really need to get on that. My mother-in-law called and asked us to go to her house the weekend after the fourth. My father-in-law passed away in his house about two and a half years ago and no one wanted to go near it for all of this time. The house was originally built in the 60s and has housed my husbands two grandmothers and all of their stuff as well as all of his parents stuff so the amount of crap that we have to go through is unfathomable. Not to mentioned all of them smoked so the "white" paint is much closer to the color of tar. The carpets are a mess, the kitchen out dated, etc. It is such a huge job and we've all been dreading it, but the house is paid off and my mother-in-law who moved to an apartment in Raleigh after living in our house for awhile needs to sell the house so that she can buy something here. She has not slept a night in that house since the funeral and refuses to ever go back alone.

I don't blame her. It would be a huge lift off of all of us to have this done, but getting mentally prepared to work harder than I ever have before has absolutely been difficult.

I'm the exact same way with the Pilates. I used to be the most flexible in all of my gym classes because I was a bit of a gymnast when I was young (I'm only 5"3' and I used to be built like a gymnast...very solid) Now, like you, when they say touch your toes I look like I'm sitting in an upright position, but I believe that will all loosen up soon. I'm back in the gym with my personal trainer tonight so we will see how much ground I've lost since the flare. The last two appointments were assisted stretching, but I think we are going to try some actual weight today. We'll see.

I'm very sleepy today and feeling some of the plaquenil nausea. I hate when days start out with that. I'm avoiding a funk like the plague. I'm hoping this day flies by.

I hope you have a great weekend. Don't over do it with the painting :)


06-22-2007, 11:31 AM
Hi Ashley,

Me too. I am/was 5'3''. My husband says I am now 5' 2-1/4". A shrinking women? I'd rather shrink from side to side. Gosh, I remember how my Aunties had shrunk. With each hug goodbye over the years I could feel them getting tinier and tinier. Humm...or was I getting bigger. Maybe the height loss is from having my disks removed. But then they did insert cadaver bone. Perhaps losing bone mass. I probably need to have my bone density checked again. Last time, I was still solid.

To me a rich life is filled with good health, a healthy spirit, a solid mind than a life filled with money and no zest for life to live it. Invest into ourselves. No deposits! No withdrawals! Bankrupt! Exhaustion, sick...You made a good decision on the career move.

I started my full pledge life into womanhood in the summer between 5th and 6th grade. I believe that attributed to my early transitions into the next phase of womanhood. Only so many eggs, for so many years. My husband and I were doing INVITRO. My follicle stimulating hormone, (FSH) was still in the low range for my age so we were cleared to proceed with the INVITRO with a process called Intra-Cytoplasmic Sperm Injection (ICSI). With ICSI, the eggs are retrieved the same as if you were doing conventional IVF. I'd self inject to produce many mature follicles, eggs. But with ICSI the eggs are retrieved and the sperm are then fertilized in the laboratory, by direct injection of a single sperm into each egg. Just one healthy sperm. But with all the fertility injections, it would create cysts in my ovaries, size of lemons and limiting the amount of follicles that matured.

They wanted at least five follicles and I had only three both times. Prior to the injections I was producing between 10-15. Being uncertain of the quality of the eggs, and the odds diminishing with three, putting them through the ICIS procedure diminished the odds of a vital embryo surviving even more. Basically nil. The doctor would not complete the procedure, and canceled. Two times.

That being one reason for the cancellation, but also the stats of the clinic would be affected if we resulted in a failure. Cancellation is different from failure. It's all about the figures for them in the end. Success rates, means more business for more advanced technology and training. Sad, but true. That is why they are so stringent on a woman's age. We requested them to complete the cycle, despite being cash clients they would not. So, here we are. We keep trying the old fashion way. All it takes is one egg and one sperm.

One time I asked my husband about donor eggs with ICSI. I would carry. His reply was that would be like having a baby with another woman. I didn't understand, but I respected his words. Inside I felt, my blood, my life..without it that life would never be. It makes me sad, knowing there will be no one of me, after me, that will look like me. I waited too long. And if I didn't I wouldn't be married to my husband now...gosh one could go mad thinking of it. I am here. I know I want children, of me, of another woman, it doesn't matter. A child missing a mother and a mother missing a child, will we meet? I hope so.

Sip warm 7-up and nibble on Saltines may help your nausea disappear. I think my IT went for a walk. A long walk I hope. I have been feeling pretty good, just yawnie, times weak...but the joints. They are doing just fine. Key words. Do a bit, rest a bit. Or, alternate between a hard task and an easy task. Paint half a wall then write a letter. Paint another half and fold some underwear. I am learning to keep IT at bay.

Painting from a platform is easier on the joints than going up and down the ladder. After painting my activity room, I was left feeling exhausted, in pain and shaking..so we had to come up with something better for the guest room. So, my husband lined up the night stands, dresser and two saw horses with boards across so I could do the top half of two walls, just by walking across the table tops. Simultaneously rolling after I cut in. Works out beautifully. My body thank him.

Whoa. I feel for you. Your after Fourth of July weekend plans. I find when I have something dreadful I must do, I talk less about the negativity of it, create tunnel vision, make it as inanimate as possible, create a structure plan and just dive into it. Makes it easier. To summarize...detach any emotions to it. It is just a job. Like cleaning a whole chicken. Yucka. Ewwwww.

Finally pool installation starts next week...yes....it was held up at the ARB. We belong to a Home Owners Association. Not as stuffy as it sounds. They can take up to 30 days..and they did. A bit annoying..

Have a lovely weekend....I will finish priming the walls. Next, tackle the cabinets in the garage. New ones. On the schedule... stain, seal and install them. Remove the utility sink and insert a cast iron sink into the new cabinets. How much will we accomplish? Just enough to leave me still feeling good, eh?

Enjoy your evening workout...

Keep well,

06-22-2007, 01:17 PM

Wow, it sounds like you guys really worked for a baby. I am anxious to get started. I have my ob-gyn appointment next week with a high risk pregnancy ob. I've been off the prednisone for almost two months which means we should be able to start at the beginning of august pending some other health issues (we are in the process of quiting smoking...a truly nasty habit that disgusts me & we are both trying to lose some weight before we dive into parenthood.)

Your advice is sound. One small, one large task. I agree it makes everything easier. I seem to be the only one motivated to get my mother in laws house in shape. I have been able to detach myself somewhat more successfully than anyone else because I've had to do this a number of times and while the loss itself does not get any easier, I am much less attached to the "things" of a persons life and much more aware of the meaning of their memories. The part I dread is that my husband and his father had a lot of unfinished business. Things they thought they'd always have time to address. This will be especially hard for him. He is still making his way through his first big loss and he doesn't yet know how to let any of his anger go. His father was hard to live with when he was young and only came around to being a good friend once my husband was well into his career. They are very much alike, but my husband is more supportive and understanding than set in his ways. I ache for him. It is so difficult to see him suffer.

We were more than happy to take the pay cut. We feel the same as you. I'm not a big "things" person. I was raised by a single mother and to be honest things were much more simple when we were at our budgetary limit. We survived on love and support. We did everything together and found inventive ways of entertaining ourselves. My husband actually left a very high paying job about two years ago for one with more consistent hours. I told him it wasn't worth having a great car if we couldn't take trips together. It wasn't worth having an impressive house if I was the only one who saw the inside of it. We live a relatively simple life, but that is the way I like it. I've never been one to keep up with the Jones. The Jones are usually miserable :) I'll take a rainy day and a crossword with my husband over just about anything.

I went home for lunch today and rested. It was the best thing I could have done because now I'm only an hour and a half from my workout and I still have energy. I'm yawney, but I can't live with that. I know we've talked about brain fog before, but mine has been really active lately. I've actually been thinking lately that I wonder if it is more painful for my husband and family. When I forget something I don't seem to react emotionally. I don't get super frustrated with myself. I seem to forget to be emotional about it. I wonder if my family is more affected because I used to speak so eloquently. I could express myself so clearly and now I find that I search and search for words. It has become like a human crossword. I give them clues and they guess the word that I mean until we agree that we have the right answer. So odd.

How old is your husband? Perhaps he will be more anxious to adopt when he is older? My husband has said that he doesn't want to think about adoption until we have exhausted our options, but I think he will be open to it if we were unable to conceive. We have some great friends who were adopted and we see what a difference good parents can make.

It sounds like the Plaquenil is really kicking in. I haven't heard you speak of horrific pain in awhile. I'm so happy. I'm feeling improved every day. i still get very tired, but my pain is minimal. I'm completely functional.

I'll talk to you on Monday. Have a nice weekend.


06-25-2007, 12:43 PM
Hi Ashley,

Happy Monday or is it Mundane?

You are very articulate in your writing skill. Very able to convey your thoughts to words on a screen, I see. I on the other hand...sheeesh. Lately my selection of words, grammar, spelling, past and present tense is that of an elementary student. Many times I am unsure. Before I used to write with out question. Example...steam cleaned or steamed clean. Something as simple as that. So, I leave what fell from my mind to my fingers tips first, short and choppy. One word sentences and hoping I don't appear illiterate like. It is a style, my signature writing....will they believe it? Hummm.

Being forgetful, I use to get upset about it too. Especially when one would say...we all forget, it is age...welcome to AARP girl. Responding with frustration, "you don't understand, I never forget." Now that I know Lupus is the culprit I don't get emotional about it either. Ah, so what...blame it on IT. Really, it is so much easier that trying to dig through the shelves, drawers and files in my brain. Ah, okay, I forgot. Makes daily life easier with that attitude now.

Despite coloring my hair, it is going back to looking light. I used permanent coloring. Is that the bleaching of the hair while using Plaquenil they speak of...hummm. About half of the strands look transparent. Gray? Naw....

My husband is 36. He likes "older" women..me, age doesn't matter. Younger or older...well, I do have a limit. Not a written amount, I just feel it when I would meet them. Prior to marriage.

Labored in the garage all weekend. What a chore! Staining, moving, sanding the cabinets. And the heat was almost unbearable to breath. Had a rotary blade fan spinning to keep the air flowing. Hey, does having Lupus affect the sweat glands, as I hardly sweat or not at all? I use to contribute that nicety to being Finnish.

I uninstalled the utility sink and now I am trying to figure out how to put the new sink in. Plumbing. Handy or manly am I? Handy. I do enjoy doing such things when I am feeling well. My husband isn't so, but he doesn't mind learning and likes to wear gloves.

Now putting up a fence, I leave that to the professionals which will be here Friday....no later than August's end it should be pool time....

Yes, my pain hasn't been in the forefront for a spell. It is nice. Just morning stiffness. Wrists and fingers mildly ache, but nothing to speak of. Gosh, I remember prior it was as though I had two broken wrists and sprained fingers. Lifting a glass of an iced beverage my wrist would feel like it would snap in two...ah, not today. Fatigue is about it and a twitch now and then...like I could doze off right now...a nice quick slumber would be lovely.

How is you health? Still fatigued too? I wish it would go away for both of us..all of us.

Keep well,

06-26-2007, 03:22 PM
Hi Ashely,

Extending a two day weekend into four or not feeling swell? Hope it is the former.

Me, doing well still. Bouts of what one call intestinal flu today,...I call it The Malarial Effect. Making me feel weak. Probably dehydrated and not retaining any nutrition.

My husband is in NY for the week. We have a crater in our yard. The doorbell and the phone had been ringing constantly. Contractors for the fence, the landscape, the builder, the pool rep, the field supervisor, the neighbor....and inbetween, the chamber pot. Calgon take me away...

Almost 6:30Pm..I am calling it a night. Thought of you, wondering how you are doing, so I popped in again to see if you had been by.

Hope life and IT has been good to you these past few days...

Keep well, Ashley,

06-28-2007, 10:19 AM
Hey Ashley,

Making a pit stop to see if you've been by....wondering how you are doing?

Start you new job tomorrow, eh?

How did your appointment with your new rheumatogolist go? Mine is the 3rd.

My husband was suppose to land tonight, but his flight was canceled out of NY. Weather. Happened to him last week too, but he managed his way to another airport and flew into Georgia before arriving in Charleston.

Yesterday I had a tremendous headache. It isn't the headache type that can be massaged for relief from the scalp because mine feels like it is literally under my skull. A the top. Crown. Like it is my brain and not so much blood vessels dilating. Nothing relieves it. Not even sleep. With each step it throbbed even more and with each leaning too. Finally, relief this morning. Just a bit drained. A flare trying to make its appearance. Good gravy, I hope not.

Not much on my agenda. Watching the pool take form. Watching the rain clouds form. Will I have a huge mud puddle, almost six feet deep by dusk? Been fortunate as it has been dry. Rain is expected Friday though.

Thinking of you and hope is all well with you,

06-29-2007, 08:03 PM
Hi Ashley,

Tonight I will say an extra, extra prayer for you...


07-02-2007, 10:29 AM
Marijo -

Thank you so much for your extra prayers. I had a heck of week last week and the weekend before. I was in a lot of pain and missed last Tuesday at work. When I wasn't in agony, I was trying very hard to stay focused and get some of the last minute work stuff done before leaving my job. It was very stressful which of course makes the pain even worse. I would go home every night and collapse. Unfortunately my husband was also on a business trip last week so I was on my own.

I'm better though. I started my new job on Friday and though I went home exhausted I woke up very low stress Saturday and all but vaulted out of the bed which hasn't happened in ages and ages. Saturday wiped me out, but for once it was because my husband and I took my mother out to the movies and to a very nice dinner for her Birthday. On Sunday, I went to lunch with my mother in law after working out Can you believe it? I don't mean an itty bitty work out either! I actually did pseudo intervals on the treadmill! I feel more energetic today than I have, but of course it is one and I'd like to take a nap, but I'm thinking the worst is finally over. This job is going to have stress too, but nothing can be as bad as the last job. Plus I love the people. They all know about my Lupus and have since before they offered me the job. They are supportive and kind and very fun. Things are really pretty fantastic (I'm also pms-ing so I'm actually tearing up right now at the idea of how great they've been.)

I have missed you and thought of you often. I know you have given me updates above, which I promise I will read, but I just wanted to let you know I'm alive and kicking and doing okay. I really do appreciate your prayers. They were definitely needed. I'm praying for you too. I'll write again later. Have a good afternoon.


07-04-2007, 08:07 AM
There she is...Bang..bang..bang, it is Fourth of July. Happy Celebrating our freedom from those Brits. Did I mention my husband is British?

Well, I am making great use of my time, stopping by as the Roomba does its thing and while he sleeps. He is a late sleeper when he doesn't work. Life's been treating you 50/50 I see. Sorry about the rough week while your husband was away.

Workout, movies, lunch..new job..way to go. Feeling almost normal, eh?

It is a weird wonderful to be exhausted from fun, doing something than just breathing, eh? Happy to know you have been experiencing it. I've been having many days like that lately. My mind is alive but my body after working around the house, leaves my joints and muscles crying. Popped three Ultracet, twitch and called it a night. Wake up rearing to go.

Spent yesterday painting the inside of the garage. It is a finished one, drywall..so we primed and painted. A lovely blue, Silver Blueberry on one and a half walls, vertical. And the rest Light Kakhi. When my husband rolls out of bed we will hang the cabinets.

Knocking things out one by one...

No big plans for the holiday. May go to the local fireworks or a movie. Transformers. Grill chicken or seafood kebabs. I also have a few flowers, periwinkle, pink to plant...What movie did you go see with your Mom?

Our yard is a disaster from the pool and the fence going in. Mud, clay, tore up sod...but in the end...wooohooo. I need to shed this weight. Atleast 10 pounds and I can swim the rest away. Will I look silly swimming in ankle length jeans and a t-shirt...how about a Spanx bodysuit...neck to heel?

I canceled my appointment with the rheumatogist. Didn't feel like being probed yesterday. I was enjoying my feel good state and didn't want a damper put on it. Rescheduled the 26th. Long ways away...

The anti-malarial pill seems to be doing wonders for my rashes, skin allergies. I could never find a hairspray that didn't make my scalp itch. Since dosing with Plaquenil, it is gone. Something small as that makes me feel so great. I tried my husband's lotion which had dimethicone...no itch, not even a bump. Can this be true? Dare I try wheat?

Hope you are having a some kind of wonderful day today. Here's to more healthy days... Time to give my husband a nudge. A bit after 11:00am.

Keep well, Ashley,

07-05-2007, 09:23 AM
I love hearing the pep in your type. I'm doing well. I chanced a Tuesday night Durham Bulls baseball game with my husband and brother-in-law after work and over did it. However after one day of rest (the 4th) I am back up and working well. I still have the fatigue regularly in the afternoon, but I have shifted all of my vitamins to post lunch and that seems to be helping the afternoon dip. Right now I'm eating fresh strawberries that my husband cut up last night. They are lovely. I love fresh fruit. I have some mangos waiting in the fridge for when I get home tonight.

I don't know if I mentioned that my husband and I are doing weight watchers. Aside from trying to lose the more than 30 lbs I gained while on the prednisone, I have some extra lbs to lose of my very own making. We have weigh in tonight which I dread every week, but since the beginning of May I've lost 22 lbs and he has lost 40. I also did my measurements before going to see my personal trainer last week and I've lost 27 inches since February. That alone is enough to keep me motivated. I wish we had a pool. Our gym membership runs out in September/October and we are weighing our options. We desperately want a gym with a pool, but unfortunately my personal trainer is tied to my current gym. She has been so great with assisted stretching during my bad days and super supportive when I'm just not up to anything so I'm not sure what we will do.

I still need to get started on any of the million projects I have around the house. My husband and I are going to help my mother-in-law and brother-in-law this weekend at my husbands parents old house. I think I may have mentioned this before, but my husbands father passed away a few years ago and my mother-in-law no longer lives in the house. We need to clean out three generations worth of clutter and the house is almost two hours from where we live so thus far it has been an out of sight out of mind situation, but alas we are going to go and do as much as is humanly possible in one day. If we ever get through this step (hopefully by the end of this summer) they can finally sell the house and get through one more phase of the grieving process.

My old office gave me the most beautiful mums as well and I need to get those in the ground before they die in their pot!

I don't blame you for canceling your appointment some days I just don't want to come down from feeling good long enough to be poked, prodded and discouraged! I have my appointment with the new rheumatologist on the 17th so I'm anxiously awaiting this new doctor. We've been told we have to be flare free for another 3-6 months before attempting to get pregnant, but we saw a specialist this morning and she seemed incredibly positive about us trying without coming back in once that interval has passed. My last big flare (more than one day) was in May, so I'm hoping mid fall to early December we can start trying. The specialist seemed unconcerned about my weight, but I figure if I have to wait, I might as well work on getting physically stronger and slimmer.

Hope you are having a low pain high energy day!


07-07-2007, 04:07 PM
Hi Ashley,

You're at your in-laws sorting through, hoping your body is holding on. Probably like me, a windup doll...zipping along...then putter, sputter. Down for the count, but waking up just fine. Hope you are having that kind of weekend. Though I wish ours could be zoom, zoom, zoom, eat, live, laugh, play, work, leisure then to bed but with IT we have to settle which for me lately hasn't been too bad. The fatigue and aches after seeing something I accomplished has been worth it.

Fruit...yum-o. My favorite, raspberries. Mashed till juicy, like a syrup, pour into a glass of iced seltzer water, squeeze a lime over it. Swirl. Refreshing. Summertime, summertime.

Look at you. Bravo..I applaud you. Twenty-two pounds and 40! 27 inches! Wow, good for you two. Mine won't leave. Maybe I lost four in 2 months. I think my metabolism is shot. Age, hormones. I ordered many swimsuits, many styles from Victoria's Secret today. So, I can have my own private humilation in my closet than in a department store dressing room. Ah, about $700.00 worth. Crazy. Surely half of them will go back, maybe all... wondering will I look like an autumn gourd. Will I gasp, cry or humm..not so bad. Of course, I would prefer the latter. Nothing that a Beefy-T can't cover, eh?

Babies. I love babies. You'll see that 3-6 months will zip by so fast. It would be a lovely Christmas for the both of you to conceive, eh? Be good, be kind to yourself, relax and it will happen...humm, maybe you shouldn't be sorting this weekend. I'll pray for baby dust to be sent your way.

Hey, I read on another thread. Housecleaning. You would have to call around and see what they perform. Some only do light keeping, dusting, vacumming, toilets, and etc. But there those who, clean behind refrigerators, do windows, laundry and etc. I don't know about picking laundry up from the cleaners. That would probably fall into the category, personal assistant. Since we have been in SC I had a cleaner over three times. She did anything. Windows, iron, vacuum, floors and etc...I had her use my cleaning products though. In Seattle, I hired one who would do big things, behind the appliances, walls, ceiling lights and etc. Ask if they are licensed, insured and have references.

I wouldn't worry if they would think you are piggy, though you aren't. You are hiring them so, hey you can be piggy. Right? You know what I mean. They clean the mess for money. Anyways, cleaning people, co-workers, associates, neighbors...someone is always talking..good or bad, so worry not.

Litttle over two weeks into summer, and for me it has been pretty good. Hope yours continues to be the same too. Not only because of the pills, but I believe by keeping my thoughts in a good place about my life has been doing wonders for me for the last several weeks. Stay positive, plan for tomorrow regardless of IT. If, IT does show, well, we will just have to do the plan the next day or next week. I am all for living and trying. Tired of wishing, wanting and watching it all go by. I am taking when I can.

I am thankful..it looks like it is going to be alright.

Keep well,

07-10-2007, 11:25 AM

Things went extremely well this weekend. I'm actually in good shape. I think I am almost back to "normal. " I've been making it through work no problem so far this week. The days are just flying by though. I guess it is good that I like my job so much that I don't notices the time flying by, but I feel like my summer is already slipping away (even though it is only three weeks in).

I've been relatively pain free as well, so I'm feeling very encouraged about the baby thing. They (babies) seem to be everywhere right now and I know my husband gets sad that we don't have them yet, but he doesn't say anything because he is more concerned about how I will handle it.

We did discuss the house cleaner and I've started looking. We aren't crazy about the rates listed for any of the national firms for what they do, so we are just trying to find an individual or small firm.

Thanks for the accolades for the weight/inches lost. It is really making me feel much better mentally than I was before because my self image is going back to normal (relatively).

I'm glad to hear you are doing so well and keeping so positive. How is the pool coming? Is your backyard still a giant pit or are things all smoothed out or something in between? Are all of your rooms painted? I'm still working up to mine, but I've been doing a little of gardening instead of watching my husband do it...One task at a time...


07-11-2007, 09:13 AM
Hi Ashley B...

Happy to know you are still left intact after your sorting out weekend.

Aren't they, I know national cleaning services are outrageously priced for the minimal work they do and require an X amount of hours minimum. Is it still 4 hours ? Here I used a family service. Mom and two daughters. They just stopped by yesterday to borrow hardwood cleaner on a new built they were cleaning. I found them through our builder, who uses them to do completed construction move in cleaning. She does only a few homes from daily living dirt. I was lucky to be able to have here on those several ocassions. She did say, only for me would she come on a Sunday if I needed her...but I haven't asked. I didn't want to impose. My husband says, impose, impose.

The pool...well, the cement shell was shot and formed. They hauled the massive dirt hill away yesterday. Most of it. Lot of dirt came out of that 7 foot deep hole and 16 X 33' length and width. Plumbing will start Friday, then the wireless electric panel...then the cement decking. Mid August, dip time.

The fence, ah not so good there. Shoddy workmanship. I don't understand people. I have met many tradesman who will lie, puff out their chest here, intimidate since having our home built... anything, any tactic to make an extra dollar without repairing or repair with garbage. And one of the favorite sayings here I noticed, and I have heard it it often is I am a God fearing Christian, I am a good Christain and I want to make you happy just after they tried to insult your intelligence, yourself and follow up with Oh, and it will be another buck. Too often we have heard that. Business in the Pacific Northwest isn't like that. I had never encountered it, but am sure it does exist to a certain degree. Left me frustrated, overwhelmed. Do they think being a Christian excuses such behavior? Or perhaps being a Christian, they know they can ask for forgiveness so hey, do, take and say what I want. At the end of the day all is forgiven?

My beliefs teach me to be a different type of Christian. Do the right thing even when no one is looking. With each ugly thing a person does to another it chips away at themselves, creating a callous on the psyche. And with each unscrupulous act, it makes the next unprincipled deed easier.

Confused, yep but I stopped stressing over it. I don't want another flare. My husband will be home tomorrow, he can take care of it Friday.

Pool guys...they have been wonderful.

Painting, still many rooms to go. 11, 12 maybe, but 5 of them are smaller. Four bathrooms and the laundry..so those should zip. The family room has high ceiling, so we will hire the painter for that one. He probably thinks I am unreliable as an hirer. Come, don't, come...will he come when I decide the color? Humm.

For now, I think I will end with painting the "child's retreat" as they call it. I call it the landing and be done with painting for a while. Once they get the decking completed, we will have a yard to get back together. We didn't realize the whoooooooole yard would be demolished. The equipment created huge trenches because of the weight, and pivoting in a circle and the ground was so wet from the rains too. Looks like someone went offroad wheeling. Lots of sod to replace. They warned us it would look like a bomb went off. I'd say and then some. It's all goog though. So much joy will come after, so a mess for 2 months is okay.

Glad your new job is better on your health and you're finding life, good things, energy through IT. I hope we have many more days like this. If not, and IT makes a sneak attack I am going to set up the media room, with snacks nearby, pillows, quilts, vases of flowers, the remote, the phone, toss my DVD collection on the floor, pull out the laptop....a couple of books and ride it out. IT is what IT is, isn't it?

Happy Hump Day..Wednesday.

Keep well,

07-11-2007, 10:15 AM

August for the pool sounds so far away and yet it is almost the middle of July. I feel like I've been in a time warp. Where do the days go?

On the Christian subject, I feel the exact same way. Christianity means something very different to me, but having been in the south most of my life, I will tell you that the attitude you describe is one of the reasons I so desperately wanted to leave in my younger life.

The reason they say it is not because they know they will be forgiven for their wrong doings, but because they know that many people from the South will hire you if you say that. I hate even writing that, but if you say you are a Christian in the south it will almost always guarantee you repeat business from actual Christians. I've found that many people who say those things do so only because they know that they will earn more not because of any real belief system. It is manipulative and unfortunately Southerners are more apt to believe you if you say it rather than judge by your actions. (This is of course a generalization, but I've found it to be mostly true)

I like people who think for themselves and are responsible for their actions. I too believe that your actions should (and do) reflect your true beliefs whether anyone sees them or not.

Well, my lunch brake is almost over. I have to get back to work, but I couldn't resist taking a minute to respond to your observation.

I think your media plan room idea is great. I keep a spare heating pad and pillows in a bookshelf cabinet in our family room just in case.

Enjoy your afternoon!

07-11-2007, 11:55 AM
Hi Ashley. Me again....taking five from washing the animals bedding. They have pillows and blankets almost in every room. Spoiled or because I got tired of dragging there loungers and quilts from the bedroom, to the media to the kitchen to my or my husbands computer rooms....humm..I just got tired.

I am a God fearing Christian for business profits...wow, more devious than I thought. Shame on them. Very informing. I feel so naive. Learning is never complete and I like life like that even if it does cause a few ruffles in my tresses.

I also wondered with a church literally almost on every block, what kind of community is it actually. Does such divided fellowship means a divided community?....hummm. I am in such a small "town" just west of Charleston and it has oodles of places to worship.

I know, I hardly believe it is almost mid July myself. I had smaller plans for my figure this year and it hasn't changed much since the beginning of the year. My Monday I will start always comes and goes...ugh. Ounce by ounce, not pound by pound it seems. I guess it is something. I do feel woohoo for you on your weight loss and dedication.

Husband is on the telly....enjoy your evening.
Keep well,
Marijo O.

07-16-2007, 12:23 PM
Oluwa -

So busy these days with the new job. The days just fly by and I find I have less and less time to check the boards for your posts. I think about you all the time though...Are you having a good day? Is the pain coming back? Is she happy with the paint colors? etc.

Things have been going really really well. I seem to be almost at full strength and getting stronger every day. I was extremely tired on Saturday, but I rested and the day turned out pretty great. It is nice to be able to give myself permission to have a "rest" day. I've never been very good at that.

I'm trying to taper off the tramadol, which has been a challenge, but things otherwise are right where I'd like them to be. I have my appointment with the new Rheumatologist and I am cautiously optimistic. I've heard both really great and really negative things about her, so I will wait and see. Ultimately as long as she is not dismissive, she will be much better than my last.

Have you seen a doctor lately? Any improvements? Or anything at all to report?

Hope you had a great weekend! (Stay cool, it is sweltering here!)


07-18-2007, 09:25 PM
Hi Ashley,

How goes life? Keeping well? How is the Tramadol weaning going?

Me? Humm...borrowing from tomorrow's reserves. Feeling a bit weak. My husband flew out the other day and the deck framers are arriving tomorrow. He forgot to relocate our plants. I was going to let them trash them all, but reconsidered. Tried locating a landscaper on short notice to help but to no avail.

I tossed two Ultracets down, donned a sun bonnet, huge face covering sunglasses from the 70's, covered myself head to toe, dragged out the wheel barrow, shovel, rake and plant pots and had at it. Three hours later, I survived. Crawled into the house nauseated, shaking, sweating. What is so weird wonderful is that I never used to sweat. Since being on Plaquenil I do. I kind of enjoy the wet trickling down my back. Gross to others I suppose, but a relatively new experience for me. But anyway, stripped my muddy gear off and wrapped up in a quilt on the sofa, dirty hands and all and passed out for three hours. Wow, I hope I didn't bankrupt myself for tomorrow.

My husband's travel was slowing down, but now it is back up. I am back to keeping my woes to myself and he seems to have forgotten. What is a girl to do? My fault, it is easier on me mentally to keep it within. Though I know it isn't whining, my mind lately feels as though it is. Maybe it has to do with my husband's body language or lack of. Though he says he gets it, ahhh I don't think he really does. I find my anaology wasn't really getting through to him. No deposits (rest) my bank (energy) bounces checks (exhausted) and goes bankrupt (couch/bed for two plus days). And there just isn't any loan officers out there who can give me a loan.

My fault, my personality keeps me pushing the envelope. I have to set limits, always. No exceptions. For the most part I do, but then I get in a pinch and run ragged. My rash is back..ugh. Eyes are dry and sensitive. GERD is flaming hot. But hey, my joints and muscles don't cause much pain. Very, very mild. That is a wonderful thing. I sleep well, my forgetfulness is at bay...so all is not bad.

Have you met with your new doctor? I wish I hadn't canceled my appointment. Mine is now on the 26th. Here I canceled my appointment and some people wait months to get in. Shame on me for pittering away such a fortunate thing.

I hope your new space in the work world has been good to you and for your health.

Deeply felt....I want, pray and ask that you, we and I all have a good life. Not just a good day, but a really, really good life.

Be well.
Marijo O.

07-19-2007, 06:56 AM
Marijo -

We sound so similar in so many ways. I too bankrupt myself, have a hard time setting a credit limit and pay exorbitant interest rates. I'm still learning to set my limits, but my husband seems to be pretty understanding. I'm lucky in that he whines about his aches and pains (not really whining) so I feel at ease whining about my own (again not really whining). I'm sorry your feeling the disconnect with your husband about IT again. For some people I know it is easier to "pretend" nothing is wrong. My mother does that. She seems like she really gets it for a short time then it is as if I've never told her that I have IT. "Don't you want to spend the day out shopping?" she says or "I really need to go to X and I'd appreciate you taking me." I have to remind her and it always smarts my spirit.

Things in the working world are really amazing. I'm very happy and after three weeks still feel that this isn't a real job, but a place for me to share ideas and help things happen. The people I work with are pretty amazing and I couldn't feel luckier.

I also have the sweat thing. I never used to sweat and now when I go to the gym the sweat trickles down my face and back and I feel myself looking for my shirt to show signs of my perspiration. I love it. It somehow makes me feel alive, like I'm cleansing my body of impurities. It really is a good feeling.

I hope you did not overdo it too much in the transplant, but I know how it feels to have accomplished something you ordinarily would have had someone else do. I'm sorry to hear your rash is back, I don't have the malar, but I have two rashes on either side of my chin that I originally thought was an odd acne, but have realized the reality only recently. I wish there were something that really worked. I put a little vitamin e on mine before I go to bed at night and that seems to help some.

The new doc was pretty good. I'm holding my full judgment until I've built more of a relationship with her, but she was very thorough in her examination and asked what I would like to gain from our relationship. She seemed responsive to my answers and very attentive. It will take time, but I'm glad I have someone I trust to monitor my health. She suggested that I continue to see my GP for my Fibromyalgia symptoms just because I've been seeing him for so long, so I will likely do that, but she will monitor my lupus and also be interested in how the FMS is changing/staying the same. My husband and I agree that she is much better. The visit lasted much longer than I had anticipated, but this is actually what I was looking for. I talked, she listened. She asked questions, I answered, she listened. This was a whole new experience.

The 26th isn't far away, just take care of yourself. I hope that you are resting today or that your energy is up and there is no need for you to rest.

Take care of you...


07-19-2007, 12:11 PM
I am alive, hey, hey, hey....

I made it through the sweat beads, dirt, sleep and today the sun is shining. Rain didn't reach my street. How about up north?

Equipment man is here installing the wireless control and filtering system for the pool. Goodness, only a few more phases to go. Framers rescheduled for tomorrow and will pour the deck concrete on Monday...sheesh all the hustling, well, I guess it did help burn a calorie or two and perhaps firmed up my guns (biceps) a bit.

The swim wear has arrived...did a duo modeling show. Me and the mirror. Not so bad. A little grab and lift here and a tuck it in there and I will be good to go for that first splash. No Xanax required.

Glad your experience with your new doctor was positive. Those are a hard find.

I read on another thread, a bit emotional today...Girl, let me give you a cyber hug. Squeeze. When you get home, fix yourself up a nice bubbly bath, fill a glass full of good bubbly, add of splash of color to your toe nails and reflect on how far you have come this year. Weight loss, new job, fired your old rheumatologist..all good things. Feel blah, it is okay..tomorrow will be better. I promise...

I have a joke for you....Well, one Friday, two women were sitting and chatting, one complaining about her spouse. The one woman looked up and saw her husband coming down the street with a bunch of flowers in his hand. She rolled her eyes and said, “There comes the butthead now with flowers in his hand. Now he'll expect me to spend the weekend on my back with my legs in the air.”

Her friend promptly replied, “Don't you have a vase?”

On that..enjoy your evening...I'll check in on you tomorrow.

Hugs just for AB,
Marijo O.
(Hope you found it funny and not gross.)

07-20-2007, 12:06 PM
That was hysterical. I so completely enjoyed it, I immediately called my husband to share. He thought it was gross, but it did get us both laughing. I did pamper myself a bit last night, but honestly by the end of the day I was feeling much better.

I've finished my application for the promotion and I'm just waiting to get some feedback before submitting it. I'm not optimistic about it going through because I've applied for this position before and the person who reviews them doesn't know what we do so she goes strictly on time rather than actual experience, but I've prayed and it is time to let it go.

I hope you've been having a good day. I'm very sleep, but I have a workout tonight that I know is going to pump up my weekend. Working out on Fridays after work is probably the best thing I've done for my SLE. I will go and in one hour release all of my work week stress and not think a single thought about my job until Monday morning. I'm sure there will be a time when I'm back in bed, but for now I'm working as hard as I can because I can.

Have a lovely weekend...


07-20-2007, 03:23 PM
Hi AB,

I did pop in this morning, but now it is late, late in the day. Happy to know you went home yesterday feeling better.

Sometimes we have to force a better mood, think good things, being mindful to have positive thoughts. Basically nag ourselves till we do or just feel the blah, cry and let it all hang out.

The framers arrived. All squared up. Spent all day with contractors crew. They spoke little English. Portuguese, their native language and my Spanish is rusty. Not the same, but close in someways. We were able to conveyed our thoughts and understood one another. Their supervisor went to check on another installation and while he was gone they cut our two telephone lines and I was trying to reiterate the decking layout. Tweaking it. In the end..it looks good to go and they were able to reestablish a phone connection with duct tape till AT&T arrives tomorrow.

Concrete pouring will take place on Monday. Glazing and plaster Wednesday and application of the pebble like surface interior Friday. My understanding of it... they will fill the pool with water then. Yes, that day, Friday. Oolala. Can it be true?

Maybe the person who reviews the application will be able to make a well informed decision this time, knowing what you actual do...I hope so.

I admire you. Despite you having IT you still keep a high energized mind. Meaning to be able to go to work, seek promotions and workout also. It takes alot of strength, mental strength to push through the fatigue and to be able to actually see the great benefits the workout will do for your body. Me, I drag, kicking and screaming or I just slump and melt into a chair and I can't see beyond the pillow and my binky.

In the end, when I do not workout I am doing more harm than good to myself. My 10 Minute Solution hardly does a body good. Sure it is something, but I think it is just barely enough to get me through to the night. I get tired just thinking of curling my hair. I think I am going to have to give up the heels and cut 4 inches off my pant legs. Stub! Times just thinking of walking in them I literally tire.

I applaud you.

I've been out in the sun a lot this week. I wonder is it IT, the sun or SS. Eyes feel like grit. Throat is parched. Nausea is prevelant. Fatigue is elevated. Dull headache. Wearing my celebrity disguise sunglasses in the house.

You think it is the sun or the Plaquenil isn't working on the fatigue yet? I started to feel like I was going down hill after I had that surprise menses visit. Had another one 19 days later and I think another one is going to make its presence known, soon. Hummm. Short luteal phase I suspect. I was feeling pretty jazzed before June 18th's surprise. I was on Plaquenil about 6 weeks prior. I think it has been 11 - 12 weeks now. Only 6 more days till my appointment.

My husband lands tonight. He misses all the action. Times I go through the phase of feeling like I was hired. Tonight I am having such of a phase, without the time card.

Glad you enjoyed the joke. I think it is more of a girl's joke.

Enjoy your weekend as I will during mine.

Be well,

07-25-2007, 06:17 AM
Hey Ashley,

So, how goes life? Your week?

Just a quick word to let you know someone, me is thinking of you.
Wondering how you are you....I'll write more by week's end or perhaps later this day. Share what the doc had said.

I don't know if I got it mixed up or the doc's office..but they confirmed my appointment last night as today. The 25th. I wrote the 26th on my ledger. Hummm...their line is busy, so I ought to know in a few. Probably my IT brain made the error. The brain and hand connection didn't make it, you think?

Hoping you can top yesterday's day and feel more wonderful than the day before.

Asking Up Above, to keep us all well.

Be well,

07-25-2007, 08:42 AM
Hi, Oluwa...

I'm pretty busy today so I can't write a long response, but I did want to check in. I'm very very cranky today because I've been nicotine free for almost 38 hours. It is making me nasty, but no matter when I do it I will be this way so better now than later I guess.

I also found out today that I did not make it through HR for the promotion, which isn't a huge surprise, but is still disappointing.

I'm hoping I'll be in higher spirits after the physical withdrawal is over, but we will see :)

I'll try to write more later.


07-25-2007, 04:15 PM
Hi Ashley,

Sorry about the promotions but congratulations...38 hours! You go. I told you, eh, I was a puffer. I always a had a cloud of smoke rings above my head. It has been four years since I put my ashtray away.

My daily words to myself. Crips I need a cigarette I would say out loud then, took a deep breath held it for as long as I could then, exhaled slowly through my nose. Basically that is what we do when we smoke. Inhale deeply let the smoke char our lungs and exhale half of what we inhaled. Yuck hey. A bad way to relax, rid ourselves of stress. You will make it girl. The withdrawals will leave but the memory of the habit lingers for a bit longer. Find an activity to replace it. Twist paper clips till they break. Chewing gum or sucking on candy will get tiresome and also you're left with a raw tongue or sore jaw. It me took a few attempts to quit.

Your thinking, I don't want to go through this again...might as well do it now, will help tremendously. I am pulling for you.

Think health, lungs, baby, family.. all good reasons to quit and put the money you save in a jar and watch the cash grow.

Now, today the smell of some cigarettes literally make me ill.

I can't imagine a cig between my fingers now and before when I smoked I couldn't imagine me without one. I believed it was so apart of me, my gesture, my personality. It wasn't.

It isn't glamourous like the old cigarette ads of yesteryears portrayed. Reeling the women of those days in. My Mum was one of them. She died of cancer. We look like women with a dirty cigarette hanging out of our mouths. Nothing more, nothing less. For me, I started because it was part of growing up I thought. Like going to college, getting a job. Silly thoughts of a teenage girl.

My appointmet was today. I was the one who was confused.

The low down...Well, as my rheumatogolist was evaluating me I was evaluating him. Kind, gentle, attenative but seemed to be lacking in knowledge I was thinking. Comparing to what I have read here, on other websites and etc. he appears to be..or perhaps new to his chosen field. Is that how you spell field? Goodness, looks weird.

I was equipped with a list of questions. I asked about my top crowning headaches...he said it wasn't Lupus related but perhaps from my sinus, drying. Memory lapses, forgetfulness he said was not related to Lupus. Humm, I am wondering perhaps my type of headaches and etc are not really the types associated with Lupus, not that there aren't any that are. Gee, that was a mouth full. My head feels full. I guess what I am trying to type is mine is different than the usual Lupus headache. Oh heavens, who am I?

Today after coming home from my appointment and researching things on the Internet I felt..I am so over this. As if, I could just shelf it. Too early for such an attitude again, I thought. Thinking like that will make life with IT rougher. So, I shelved the attitude. Er..ah..for now.

He prescribed Requib for my achy legs. I don't feel like I fall into the Restless Leg yndrome (RLS) category so I wonder, is it wise for me dose with this drug. My legs ache when I go to sleep. And the only way I can fall alseep is I have to flex my foot up, tighten the calf muscle and move them about. Weird. Eventually I doze off and come morning it is like it was never there. No creepy crawly feeling. Just aching. Maybe that is what RLS is. I am out in the corn today.

Also, he wants me to take 10 mg CoQ10 for fatigue. He thinks with the menses so close to together and being heavy that maybe I am slightly anemic. My blood should have been replenished and fortified by now, eh?

Oh, and Aquoral, artifical saliva. Spritz in the mouth 2 times, 4 times a day. Feels fabulous. Totally takes the dry chicken swallow away. WD-40!

It has been a long day, for weak me. I even stopped at Publix and filled a cart. Whoa....such excitement.

My husband is in NY, again. Lands tomorrow. I think he has one last trip there and it will be either onto Minneapolis or Cleveland for another project. Never ends, just a different city.

Finally the rain came and quenched the land's thirst here in Summerville. I should see if it filled our pool. Raining up north too?

Breathe deep...keep busy and the urge to puff will pass. Remember the urges will always pass till and eventually the urge is nevermore.

Be well, Ashely.

07-26-2007, 07:30 AM
Thank you for all of your non-smoking encouragement. I too have always felt that the cigs were just a part of me. What else do you do when you are talking over coffee or having a lull in the conversation or sitting on the porch listening to the rain. I'm slowly coming out of it though. It has been 60 hours since my last and I'm feeling good. I actually had to stop and calculate that. I think that is right. I haven't had one since Monday around 10 PM. The crankiness is subsiding. I haven't been nasty to anyone. :) Such a huge improvement.

I'm really glad to hear that it isn't REALLY a part of you. I've tried to quit before and always felt like I was having an identity crisis.

So your doctor sounds interesting. I've had the same response regarding my headaches...they are not lupus related. I've never taken requip, but my husband does. He doesn't have the "typical" restless legs either. He actually randomly jerks his legs in the night. He never feels it, but I feel him twitch and then it is over.

I've never even heard of CoQ10. i take so many things, but not this. how close together are your menses? Mine seem to be getting closer again (they used to be close together, then they were regular, now they are going back to being close together) They have always been heavy and I've always suspected that they were a part of my overwhelming fatigue. I've been taking an iron supplement for months though and my continuous blood testing shows no anemia so we are unsure what causes it. If the CoQ10 works, be sure to let me know.

No rain here yet. I've been waiting for it and though there has been a threat for several days there has been no relief from the humidity. I'm feeling the need for a good emotional wash and for the rain to pound down on the haze of the city, but I wait.

I'm missing the ocean. It has been to long since I've seen it. I'm going to my Grandmother's this weekend...haven't seen her in months. She and I have a special bond in that I actually care about the stories she has to tell. My mother was going to come, but has decided against it. It will be good to have my grandmother to myself ;)

Thank you for all of your support...


07-26-2007, 12:41 PM
Hi Ashley,

You are welcome. Seventy-two hours and they say the withdrawals cease. Eight more to go! I felt like an airhead for weeks after that last cigarette I snuffed out. I wonder what explains the airhead I get today.

My menses currently are 19 days apart. Prior I was the usual, nothing special every 27 days, light 3 days. Knew when I ovulated, knew when the event would take place within 2 days. Now...it is a surprise. Having such short cycles is not usually a good thing for conceiving. You need atleast a 10 day luteal phase. That is the phase that follows ovulation. Ideal 12- 14 day phase.

Do you know how to tell when the ideal phase of your cycle is when to conceive? Do you know when you ovulate? If, you are interested I can share what I know. Or recommend literature. Gosh, I sound like a brochure, eh? The best thing I have learned is never obsess about conceiving. Stress delays ovulation. Delayed mine as long as 89 days. At a time we were obsessed with it, soon sex become a chore..yeah, yeah...are we done yet. Times it was comical, and times non-emotional. Now, we don't think about it. If I notice a "ripe" sign, I initiate without revealing why to my husband but I think my Easter basket is almost empty. I thought it was last year, but I guess there are a few more left.

CoQ10 is an enzyme for creating cellular energy. Remember how wonderful I felt after being on Plaquenil for about 5 weeks? Then after my cycle started again I went kapoot, fatigued. Maybe it is hormonal. I remember when I first started to exhibit (unknowingly) Lupus symptoms I was treating myself for chronic fatigue and used CoQ10 along with vitamins and minerals as part of my supplement regime. I think I emptied the bottle and felt it didn't give me any relief, so I discontinued. I'll give it another whirl. Prior I would only use Alternative Healing regimens. After my back surgeries I gave up the St. John's Wort and wild yam and opted for Vicodin, Morphine...

Smoking, breaks, waiting on something all go together it seems. I remember my first attempt I asked a woman what she does when she stresses or breaks. She replied, "Can't you tell." "No." She replied with, "I eat." Hummm...that isn't a good thing either. Today, I grab a magazine, type a letter, shop the Internet, post a message, call someone, do a little dinner prep. Busy hand work I guess, a diverson without knowing it now. No different then thinking it was "natural" to smoke while taking a break. Ah, so many things to do beside eat or smoke.

Though we live so close to the ocean I haven't made my way there in recent weeks. Busy catching up, then exhausted from catching up. The merry-go-round is maddening. Soon we will have our private oasis.

I hope how I envision the landscaping, it will be beautiful. Hard to see it because when I go to the nurseries they have such young plants and trees. So, for awhile it will look sparse. Next week I will meet with the landscaper to help bring my ideas to the dirt.

They finished glazing our deck, a day early. Wow! I don't know if I chose the right color. Humm..hurts my eyes but they are sensitive today. I will see what my husband says tomorrow and see how my eyes react then. It is antique white. I know I want a white...but I didn't want a brown or gray tinted white.

Does Requip work for your husband? Did it work immediately?

Enjoy the fresh air, enjoy your evening...

Be well,
Marijo O.

07-27-2007, 07:13 AM
I don't know much about my cycle officially, but I ALWAYS know when I'm ovulating. Anything you have to offer on the topic is of interest.

I'm in a terrible place today. I cried most of last night and I've been having boughts today. I am not really what you would call a crier, so this is pretty uncool. I vascilate between wanting to be around people and wanting to go home and crawl into bed. Just struggling today. I'm hoping it is the lack of nicotine, but I really don't know. I feel worthless. Just super negative.

I got a little ticked at my husband last night and somehow that turned into a four hour discussion that he prompted on how I'm neglecting him. This is so completely unlike him that it just threw me for a loop. We've never had problems before. We have fights like everyone else in the world, but we've always had healthy communication and I've never been worried. I was so upset last night that I really wondered if I should just take a couple of days off from us and stay in a hotel or something. Like I said...I'm struggling.

This has been a really crummy week and I can't wait for it to end. Hope things are emotionally sunnier in SC.

As far as the requip is concerned. I still haven't noticed a difference and he has been on it for quite some time. He thinks he sleeps better, but I still get woken up by his jerking legs. My boss is on it too and she said it worked pretty well for awhile but now not as much. I think they just increased her dosage.

I'll be checking in today if you are around and then likely out of town this weekend depending on whether I feel like I'm helping or hurting my marriage by being away (I was already planning to go see my Grandmother this weekend.)


07-27-2007, 09:52 AM
Hey you,

You may feel worthless, but I do hope you know in your mind you are not. Perhaps you feel negative today is because in an indirect way your husband made you feel like you weren't nurturing him. We are creatures, women who instinctively nuture, be it to a child or an adult. And when questioned it does leave us feeling, well worthless, selfish perhaps. I don't like when someone feels bad and I am the cause of it unknowingly.

I am learning alot about men, being married and here when I was single I thought I pretty much had them figured out. I have learned alot from my sister-in-laws. With my own sisters they don't talk about the negative emotions within their marriage. Afraid perhaps they would feel judged or even worse we would judge the man they had chosen.

I have learned men, regardless of age, maturity, career responsibilites they are like little boys inside emotionally. And they have the ability to to flip it, that they are the victim and our emotions and conclusions are unjustified. Leaving us to doubt our intent, our understanding and our feelings.

Though I don't understand why it is, I do know you you have to coddle their ego. Ensure they feel special..praise often. Maybe a weekend getaway will help. Seduce, pamper him...hold hands, sit close and apologize for unknowingly neglecting him with out saying any whys. And in the end you both will feel better.

And.....sometimes gaps, time apart can help but sometimes it can create a bigger gap. Let you instinct be your guide..

Cry, it releases alot. It could be the nicotine withdrawls, hormones, Lupus, medication. I've been having a crying jag myself. I was thinking mine is contributed from using less or no Ultracet. I had none yesterday. Are you still weaning off of yours? So, I popped two and chased it with a Xanax this morning. I just wanted to be even today. My knees no longer hurt, my headache is gone and I am in state of who cares what is happening in and outside the house.

Information....when my brother stopped smoking he was having anxiety attacks and was prescribed Kanax.

On ovulating and conceiving...how many days after you ovulate the event begins? Less than 10 days? Just before we ovulate we have a cervical fluid. The consistency of eggwhites, stretchy when it hits the air and the appearance will be clear. This means very fertile. Can last for a few days prior. Have you noticed the difference when you use tissue after you urinate. Feels like it glides on some days. Ever feel that...that is it.

A great read is, Taking Charge of Your Fertility, Toni Weschler author. Very indepth about fertility, infertility and more.

I did the charting, the temp thing it refers to. I would avoid that as a way to indicate ovulation for conceiving, That is where I became obsessed about it. Taking your temperature is a good way to find the rythm of your cycle in the beginning. The post ovulatory, actual ovualtion and length of your luteal phase.

Keep your chin up, not too high..you might drown when it rains.

Be well, I hope you can salavge the rest of your day.

P.S. My husband is chapping me today. G-r-r-r-r-r.

07-27-2007, 02:02 PM
So lots of things happened today that have really changed my attitude and overall selfworth evaluation, though few of them really should have had that great of an impact, the combination of them really gave me a boost.

I went to lunch and though I was taking a leisurely lunch with a friend, they took especially long and the chef gave us the lunch for free. This was my first perk up. Then when I got back to my office, my husband brought me a sunflower that he bought for me at the farmer's market. Finally lots of people have stopped by to tell me how unfair it is that I did not even get seriously considered for the promotion. Finally I read your post and everything fell into place.

Men are funny creatures and I believe that if I had said the same words to my husband he would have taken them much better than I did. I believe he genuinely wanted a conversation to address our communication issues and I know this is a rare occurrence with most men so I should have been more understanding I think. He feels just awful that this conversation led to my feelings of worthlessness. I think you are right about us feeling the need to nurture and feeling unbelievably bad upon realizing an inadvertent failure. We are back on the mend. We will talk about it tonight, but then I will likely go away for the weekend to my Grandmothers.

I have actually planned to use my friend's beach condo next weekend, so I will also be trying the focus on him, seduction, etc. to let him know that he is my number one priority and that I am completely here for him. I wish I could have switched the weekends, but the promise and commitment of that time seem to be enough.

I don't understand the not sharing of sisters. I have friends who never utter a single negative word about their spouse as if I would think their husbands were perfect because I've never heard their imperfections. I gain so much strength from know that others experience the same annoyances. It isn't that I want my marriage to be like everyone else's, but sometimes it is good to know what is and isn't that big of a deal. I'm not a judger of others, so I don't really personally understand the fear, but I can see how that might prevent one from sharing.

I have completely weaned myself off of the ultracet. The Doctors say they would rather I take vidodin a few times a week rather than the ultracet at all. So that is what I'm doing. It is not always easy and today I'm especially sore because I didn't sleep much last night, but I'm really getting back to my pre-flare self and I wasn't taking the ultracet everyday then, so I think I'll be okay.

So in my "normal" cycle I am between 27 and 31 days apart. Lately I've been having a cycle twice a month and then once a month on alternate months. On the normal months, I ovulate smack dab in the middle of the cycle with cervical fluid lasting for two days. It is very distinct so I knew what you were talking about immediately though I never knew it was called that.

I haven't quite decided how I will handle the charting/temp thing. I will pick up the book you recommend though. My husband and I are trying not to let it get to the obsession point until we are certain it is going to be difficult to get pregnant. Since we have never officially "tried" to get pregnant, we are hoping that we will be pleasantly surprised when we give it our all in the late fall. I will likely do the temperature thing anyway, but that is just the way I am. I've always been pretty obsessive about my temperature as it is.

I'm sorry your husband is chapping you. Is he back then? What did he think of the white finish? (I'm sure it is lovely by the way, it sounds it!)

If I end up at my Grandmothers, I won't be able to check your response, but I'll be back on Monday. Have a wonderful healthy relaxed weekend.

Thank you for picking me up and dusting me off. It is so good to share with someone who gets it.

may your soul be nurtured this weekend...


07-29-2007, 07:01 AM
Hey Ashley,

Do you think the Vicodin was making you more touchy, irritable? I know it did that for me. How come your doctor wanted you to switch from Ultracet to Vicodin?

Communication is really the sucess in any type of relationship. Communication, listen, understand. Some people think they listen just because they use that cartilage to hear, but hardly active listening. Seems you two use both, audio and digest mentally. In my marriage it is difficult at times.

He chaps my hide by being so absorbed into this career. He can not juggle life and his career. Priorites are a bit mixed up for being married. Successful at his career, but I don't feel he is so successful in our marriage. I speak with my Father and he says he understand my husband's thoughts as he did the same to us. Neglected his family and realizes now it wasn't the best thing to do. So, as my Father ages knowing he missed out he is now always there for me, for all of his children. Readily admits his mistakes with his children and with our Mum.

We struggle at times. I feel he was robbed as a child. Not being taught empathy, self-reliance, charity. He learned to give by guilt. In his culture men are the heads. His sisters have a saying. Sure they are the heads, but we are the necks. We support the head and turn the head. But really, that isn't what I want. Reliability on one person can make that individual resentful. No blossoming into their own. I like to support but not control.

I too am like you. I judge not. When I find similarities it makes me feel normal too. When I talk to my sisters they change the subject. I have three. I have 5 sister-in-laws.

The white finish he liked, okayed. My same view. We believe they didn't mix the color correctly. When we matched it to the chip, it was too light. On Monday will we see what they have to say.

I hope your visit with GrandMum was just what you needed and your next weekend is something you look forward to.

Be well,

07-30-2007, 08:34 AM
Hi, Oluwa!

As always it is good to hear from you. I'm sorry he is chapping your hide. I do understand. My husband too put his career first for a lot of years. He was very very successful, but, I never saw him. His father did exactly the same thing and missed out on being a part of the family so it seemed perfectly normal to my husband to do the same. I begged him to find a job that was less life consuming, but he resisted. Then he became the company scapegoat. He was let go in a desperate attempt for his boss to save his job and make it appear that my husband had made all the mistakes (which was laughable because my husband was hired to fix all of the problems and then let go seven months into the job after having pulled the company back into the black, but that is corporate). My husband was devastated, but it opened his eyes. He realized what was important in life and took a pay cut to have a job where overtime is not only not the norm, but is discouraged. He is still an environmental engineer and he still loves the work, but instead of being the consultant, he works for the state. Things move at a slower pace and there are far fewer fires to put out.

We are still struggling along on the emotional front. We've been up late talking almost every night. Even though I was out of town this weekend (which was great by the way) we talked after everyone else went to bed and continued to work on us. He has really opened up more than I could have imagined. I always knew he was more open than any other man I've ever lived around, but this is different. It is like he is finally letting go of all of the natural male inhibitions and allowing me to be his partner as much as he is mine. It is not the easiest thing in the world, because I've always been the center of our relationship. I didn't even realize how much that was true, but it makes me feel selfish and sad. He has been the one to always give and I've been taking without giving it a second thought. He isn't calling me a bad wife, he is just being honest with me.

My grandmum is really good. I had a lovely time with her.

More later...


07-31-2007, 08:00 PM
How are things on the front? Holding the fort down?

Here, in the south I feel like I am in a walking coma. Insomnia. Actually a disruptive sleep. My husband's arms flailing about in the bed, while depriving me of air. Snoring, he inhales it all. Makes a restless night for me. It has been two days. I wonder what he dreams of because he can't recall.

Tomorrow he flies out, time for me to catch up on a bit of shut-eye.

The gentleman who oversees the crew who mixed the color for our decking said, "yep, it is white...." Wrong color, they forgot to add the hues. He will customize another color to our liking. The current one looks like snow melting on an early spring day.

Corporate America my husband is still learning about. I remind him, despite the rapport he has with his company we are all expendable. He believes everything comes out in the wash. That maybe true, but it will be him who will suffer the shrinkage I say. This conversation we engage in comes up regarding vacation, sick leave, comp time... The honor system they practice. He counts the hours he uses, but do they count the hours he works till midnight with India...hummm. Will they honor a month of being ill and etc I ask, especially when an expected illness like we have gives rise. He hopes so and so do I. Loyality usually runs one way in a company. Sad to say.

This is his last week in New York then onto I believe Chicago. Tomorrow it maybe Minneapolis and not Chicago. Always changing. Crazy schedule.

My husband and I are going through this phase where I feel like our communication is like an old movie reel. With the film flapping with each revolution, waiting for it latch on so we can watch the movie. Move forward and enjoy. It has been a rough couple of weeks when he has been at home. My head is numb. Over and over the same conversation.

Unknowingly being selfish is so very different from being selfish and knowing. Don't be hard on yourself. Okay.

With IT I feel like I've reached a plateau. I feel like I am stuck in blah. Not ill, not well. Tired but I could putz along. Sore but I could dig a small trench. Actually I had to. The rains filled our planting beds, seeped up over our deck. They didn't redirect the gutter flow, yet. So, we dug trenches to redirect the flow into the wetlands. I must have looked hilarious. Rubber boots, orange flowered PJs and a pastel green raincoat, hooded and tied shoveling mud in the pounding rain. What a mess.

Sheesh when the skies above South Carolina bring rain, it rains big, it is in buckets. Fast and hard. The rain in Seattle is so different. There, drizzles and lingers. When I lived on the Sammamish Plateau, it would look like the lightning was dancing on the mountains tops. Here, it makes me jump and scream as though someone turned on the lights in all the windows from outside.

Each day it rains, it delays pool time. July 31st, well, came and almost gone for the interior finish. Now we're looking at August 2nd and pool time Monday instead of this Saturday...sigh.

My husband said I shouldn't feel self-conscious in my suit...I said I wouldn't if he would wear a Speedo. No Speedo? I could modify one for him, my bikini panties I suggested to him. Ill at ease? He would be. He has a nice frame. I just know he would feel, well..naked and vulnerable.

So, this has been my week thus far in Summerville. How about up there?

Still breathing in fresh air only?

Be well, AB!
Marijo O.

08-01-2007, 05:33 AM
Things are, well, fine I guess. I'm tired today. I've been struggling to get enough sleep and the humidity here is miserable. I wish we had rain. It is funny how you describe the storms here in the south. They really are violent, but they put me at ease because I'm so used to the clap of thunder like a gun in your house and the bright lights of the bolts of lightening. The rain in Ireland was the way you describe the rain in Seattle. There was no storm, just a constant mist that lingered, sometimes harder sometimes softer, but never driving like here.

Only fresh air in my lungs for a little over a week. I feel good though. It is very strange how quickly I've adjusted to not going outside for a smoke. I never thought it would happen so quickly. I've avoided my front porch because that is where I used to go to smoke in the evening, but last night the phone rang and I took it outside. Half an hour later (my mother) I found that I was back inside and the thought of smoking had not even crossed my mind. My husband is struggling with it. He is OBSESSED with smoking. He has not had a cig since Saturday, but he wants one constantly and talks about it even more.

We have also been struggling along. I get very irritated with him so quickly. I love him very much and he is still my best friend, but he is driving me crazy. He has a ton more energy since the weight loss started. He has yet to find a way to channel that energy so it comes across as a constant frantic panic and it is jangling my nerves. Our commute in has become very tense as I'm usually pretty reserved in the morning. He used to be too, but now he is very chatty. We seem to be unable to communicate these days. It is very strange. He is constantly searching for the impetus for his newfound (insert whatever you want here, because it changes constantly) and I'm tagging along. We've always been great together and I'm just at a loss for this complete lack of being in sync. It is like he is an LP on 45 speed and I'm a 45 on LP speed. We just can't get it right. I end up feeling sad most of the time and I know he is not any better. We don't know what is wrong so addressing it sends us in the same loop over and over and over again. One giant skip. I just want to scream.

Anyway. I don't know how to help us heal. We are going to Myrtle this weekend and i'm hoping the weekend away will do us some good, but I have to say I'm not all that optimistic. Right now I think having about a week apart would be more useful, but I don't know how to ask for this without it sounding like a trial separation which is absolutely NOT what I'm looking for. I just think we have been around each other so much that we are getting on each others nerves and that is clouding whatever the real issues are.

I'm sorry your pool isn't done yet. Not much longer though. I'm really glad they are addressing the color...will you go with the same choice as last time or will you just try something new?

I laughed myself silly at your modified speedo suggestion. Primarily because all I could do was imaging MY husband in one of my bathing suit bottoms. He would have none of that and honestly I wouldn't be seen in public with him if he would. The hilarity of the image in my mind though is enough to carry me through the morning relatively cheered. (Thanks!)

Have a great morning. I'll check back later.


08-01-2007, 06:23 AM
Hey you,

It is a mind full trying to defeat too habits..two people, same ones. Weight loss, nicotine. If it was my husband and I, I would think one of us wasn't come out of it alive. No, for real now, that is alot to contend with. Both causes irritabilty, nervousness, hyper and etc. A hunger for two fixes, wow. Throw a new job into the mix. Whew...

Gee, what is a girl to do. I know a weekend without the other seems so tempting. Times I look forward to it when he departs and encourage a vacation alone. Sometimes we need space to adjust our attitudes. It is hard for woman to disguise their true inner feelings...ah, it is okay when really it isn't. I think we are pretty much transparent in that area.
Are you afraid the time together will create a bigger gap, than apart?

While at Myrtle, maybe while you're indulging in something relaxing, direct him to the gym, a run on the beach, rent a pedal bike..or find something to do together where it will be hard to figet and chat. A movie, a concert, a play..a ride at the fair. Screaming like bloody fools.

Or make a pack, no working on marriage "stuff" this weekend. Romance, romance only....

You are just not at the phase of elation, enjoyment with giving up two fixes as your husband is...let him know that. Women, our bodies handles things so much different. When I quit, I was waiting and waiting for this feel so good feeling to come. It never came, or perhaps it was so gradual I never noticed OR Lupus camouflaged it. Probably Lupus.

Call in sick tomorrow if you can to regroup alone, is an option..

Ahhh...So many ways to appreciate the upcoming weekend. I feel for you. I've been there. It is fortunate for me at times my husband travels. I feel guilty for writing such words. But it is my truth. Typring, saying it...can bring clarity to the situation.

So whaddya think?

I am wondering where is my fence guy..humm. Let me give him a jingle.....I'll check in on you laters to see if you've been around.

Speedo's. The helmet is it what makes me roar.

Enjoy your morning. Tata.
Marijo O.

08-01-2007, 07:08 AM
So I think you are right on all counts. My husband used to travel a ton and now not at all. The time alone gave me time to regroup. I can't take tomorrow off, but I'd REALLY like too. Hmmm...maybe Friday. My only fear is that I will spend the day preparing for our trip then feel resentful that he didn't help.

I am afraid that this trip will bomb and that the gap will feel larger. I don't expect this trip to "fix" everything, but I'm still having trouble identifying what is "broken" We have really swapped roles. He is the one that wants to talk all the time and work through all of these emotions together and I'm the one sitting helpless inside my "cave" trying to figure out everything internally. It is a real role reversal that I don't quite know how to deal with yet. I guess we've always done well on trips, especially those to the ocean. My fear is that if this fails to re-sync us, I'm not really sure where we go from there. All this sounds like I'm ready for us to split up, but that is truly the furthest thing from my mind. I don't feel like we are going through a "rough patch" I just feel like we are blindly grasping for a way to verbalize the changes that have taken place over the last year...Lupus, jobs, smoking, weightloss, gym, etc.

Part of the struggle is that this is really the first time that we have not had anything to take all of our attention. I'm getting back to normal (or at least my normal) and he no longer has to focus on helping me. I think he feels unneeded. Whereas I feel like I'm finally getting back on my feet for the first time in awhile and that it is great to not need so much help. Then he feels full of energy and I feel tired. Then I feel great about quiting smoking and he is constantly fighting the urge to light one up. He feels chatty, I feel quiet. I want to watch tv, he wants to talk. I want to talk he wants to read. We are just never in the same mood at the same time...out of sync. It is exhausting! Really really exhausting. We've felt out of sync before, just not for this long or to this extent.

It really is quite amusing at times how much we've switched roles. Lately I'm pretty sure that a little romantic interlude would bring us back into sync and he thinks that that will solve nothing! Hysterical.


08-01-2007, 08:45 AM

Taking five from my chores...

I know exactly how you feel. Like a missing cog. The chain fell off the bike. We've been like that for a spell too, but with other things tossed into the mixed.

Where you and yours and me and mine are at.. at a place to grow more, to bond more. Though we struggle to achieve that place eventually, hopefully we will land there. As long as we keep things in perspective. Different is good, it gives us a chance to grow as individuals too. Learning to compromise and respect one anothers' space and time.

I've always liked the buddy, buddy, best friends deal but I am finding that isn't ideal. We are individuals. Harmony, chaos, compromise, accept what is... that is the real deal. Best friends, well sometimes we are not honest as we tip toe around the issues.

Usually in argument we look for control, to take back control or influence another into our way of thinking. In reality we should be looking for a compromise and/or accepting things that can not change and look for admiration in the differences we have and how it compliments rather than how it takes away from the relationship.

Gee, I am probably talking like a sausage. A saying in my family. I know what I mean, but can't type what I say.

I also feel if we see failure before it begins, i.e., your weekend, it surely will fail don't you think?

If you recognize a possible resentful emotion, you can divert that emotion into a more product one. It is all about our thinking...changing it up can change the outcome of our day. Difficult but it can be accomplished.

Know, I have felt great resentment when my husband always travels. Especially during the building of our home. I alone, coordinating, packing, cleaning, moving from house to apartment..did that 7 times in two years, painting, ordering. I always felt he planned it that way. My husband could not tell you where the wire whisk is in our kitchen, or where the local hardware store is. He doesn't know the difference between a Philips screwdriver or a flathead.

And along the way, through that I feel neglected and he, the selfish one get's all mine attention. When I first came online here to this forum..I was at the end of my rope. Frustrated, no hope, no support. I reached out towards my husband, help me..but I soon realized that lasted for a minute. Actually a few weeks. Now he is complacent about my illness and I go back to dealing with our life alone. Maddening.

I am trying all angles to correct the course, the ones I have mentioned here. Will I be successful? I hope so. And too it depends on how open he is. His willingness to change up a tad.

Times I think he is getting it, and times I think he has forgotten everything we had discuss. AADD? Perhaps. Hearing loss? I ask that too...

Fence crew hasn't shown up..wondering did they forget. Good help is a hard find here. Another thing I struggle with while he is away dining in restaurants, sipping cocktails, having his bed made daily and I am left dealing with the workers. Today no workers...egads. Need the fence up while the pool is filling...

Enjoy your lunch.

08-03-2007, 10:12 AM
Good Friday afternoon!

So yesterday was the pits, but I stayed home and rested and I am feeling somewhat better today. I hope you are well too!

Did your fence guys ever show up?

I loved your "talking like a sausage" bit. I knew exactly what you meant though I'd never heard the expression :)

The best friend thing has always worked for us, but things are changing and I think that is okay. We are going on our trip this weekend and just knowing that we are getting away is a big boost. We are both more patient and more kind to each other. Last night I spent the evening boosting up my husband because he is now down 55 pounds. I'm very proud of the huge effort he has put in. I didn't go weigh in yesterday because I felt so miserable, but my weight loss has definitely slowed down. I don't really care how long it takes me though as long as I'm moving in the right direction. I'd like to be happy enough with my weight to get pregnant in December, but the specialist told us she isn't so concerned about the weight. (I still am, though)

I do hope you have a wonderful weekend. I'm finishing up some projects at work today so I've been quite busy. I'll try to check in later before I leave!


08-03-2007, 11:27 AM
Hi Ashley,

I am happy to know you are feeling better this day, even if it is somewhat. Somewhat is a bit of something good...

I hope I didn't sound gloom and doom about marriages being best friends isn't ideal. Probably my term best friends is different. I just feel with being best friends I can or they can and do... tip toe around issues with laughter, being selective in words, avoiding conflict...using the words, oh, that is okay. Always being on common ground, same footing, doing things together that are only compatible. For me, in marriage I feel I need to go beyond best friends and realize we are not alike, not same, same and to be able to accept, enjoy each other when we are different. I guess to me, it is an itimacy that goes beyond best friends. A better plane. Maybe my beyond is your term for best friends and have been on that plane already. Ashley, I am talking like a sausage again, eh?

Nope, the fence crew did a no show but called the following day. I guess he has a bad case of poison ivy. I had already hired another company that day but due to the rain today they stopped and will resume on Monday. The pool is 3/4 full of H2O after 24 hours. Looks refreshing, even on this haze, gray, drizzle rainy day..

The yard is a chocolate mess. We have alot of sod to replace.

When we hit a plateau in our weight loss we have to change up something. Maybe an extra 10 minutes of exercise during each session. Lifting more weights now? Increasing muscle mass? Do you use just a scale or a tape measure too? Aren't you doing Weight Watchers? Points? If so, somewhere I read there is way to help with the plateau. I will send it later... As I recall you raise you points for a day or every other day, then drop to kick start your metabolism again. I found it when I was researching WW.

I don't know if one fully recovers from an eating disorder, but if one does then I can say I am a recovered anorexic/bulimic. We may not participate in the acts but the tendency to be still lingers in our thoughts and in our way of eating. I physically participated in an ED literally half of my life. Mentally, more. Sometimes I wonder, as I read more about Lupus, I also see some suffer or suffered from an ED. I wonder if there is any connection there.

Play hard and leave the thoughts of weight, Lupus, work, stress behind this weekend.

Hugs..keep well,

08-03-2007, 11:53 AM
Hey AB,

I just did a quick google and I found this regarding ED as a possible autoimmune disorder and the possible connection with Lupus....




Happy Friday,

08-03-2007, 09:02 PM
Gosh, it is a bit after midnight. Up late waiting for the pool to complete the filling. Oh, about 3 more inches to go.

Trying to keep awake, to ensure the float shuts the water off as suggested by the field pool supervisor. Maybe I will have to set the alarm as I am getting weak and tired.

But while waiting, watching TV it popped into my head. Wendy Plan, for Weight Watchers. Came online, googled and sure enough..here is the link. I didn't want to forget while it was fresh in my thoughts..


Check it out, if you are on WW.


08-08-2007, 12:57 PM
I've been MIA since the weekend I know, but I have been thinking of you. I take it the pool is full by now. Were you able to enjoy it at all this week? It was certainly a good week to have a place to cool off in. I wish more and more each day that I had the same. I did check out the Wendy Plan. It looks pretty cool and I'm definitely going to give it a shot. I've gained eight lbs since quitting smoking, but I'm seriously back to portion control so I think this will get better soon. I stayed home from work this morning and slept. I was in a great deal of pain and am still suffering some. I had an appointment with my Hematologist at 1 and decided to go into work after that. I knew if I went back home I would stay there and miss my evening personal training appointment. I don't want to go and go all out, but I keep canceling these because of aches and pains and I know that it is good for me to even move around a little. My knees and legs have been red and swollen, but I think the stretching will do them good. I don't know if this is good or bad stubborn, but I'm afraid of laying in bed too long these days.

Every time I lay in bed all day I feel a little set back at work. They know about the SLE and I think as I had feared, they are taking it a bit too much to heart. They are constantly worrying about whether I'm taking care of myself instead of training me on my new job. I get frustrated, but in the end I know it will just take them sometime to get used to the idea. This is the first job I've ever taken where they knew straight away that I was sick. I usually work for six months and then let them in on it to give them enough time to see how hard I work before making a judgment on how sick I am and how that is going to affect my performance. I knew all of the women I work with before I came to work here though, so it is a bit of a different situation.

My husband (Steve, by the way) and I had an amazing time at the beach last weekend. It was everything that I hoped it would be. We talked a ton and it really does seem that I over reacted a great deal. He needed me to be a sounding board and instead I spent all of my time trying to fix his problem. Once he explained that he is just trying to be more communicative with me the way I am with him, I realized what a great thing that is and vowed to try to adjust to this new openness. I know that sounds a little odd, but I've always been the really open one. I won't allow anything to fester if I can help it and he has always been the let it slide type. Now he is making an effort to be as honest with me as possible so that he feels like he is participating more in the relationship. This really is a good thing. We talked about this Friday night then went to the beach saturday, out to dinner Saturday night and then played put-put Saturday night. I haven't had such a full day in years (Well not counting my Ireland trip). I was nervous about the beach and what it might do to me, but I slathered on the SPF 45 we had and went to the beach around three after the prime heat had passed. Put-put was fun and we chose a course with plenty of places for me to rest. It took us much longer than it normally would have, but it was a blast. I'm so glad we did all that we did.

How was your weekend? Your week so far?

I hope you are feeling full of energy this week!


08-09-2007, 06:55 AM
Hey you,

I wondered how your weekend liaison went...great time I see. We need that sometime. I think I am due for one, with my husband of course too.

How is your pain now? Better? Okay? Or running about?

Is your pain IT pain or from doing more things, different things...Put-Put? I myself is extremely sore from swimming. Oh, how I wish I had gills and fins. I've been doing a workout for 20 minutes. Ah, it feels good to feel free to move so effortlessly and weightless. Fabulous for my joints.

Smoking replaced by eating always seems the choice. Ugh. Sit on your hands. Hard I know. I know I grew when I stopped. It is as though we forgot how to really use our mouths for just breathing and swallowing saliva. Feeling somewhat empty, eh, without a smoke stack in it? Do the Telly Savalas, Tootsie Pop...

I hope swimming will jump start my weight loss. It wasn't until recently I broke out the scale. A scale can be detrimental to a person like me, with an ED. Sounds like an oxymoron. I always ate well as a bulimic/anorexic. Well, I did when I ate and even when I binged. Bingeing on yogurt cups, drenched in mangos, macadamia nuts and papaya. Yogurt covered raisins or oatmeal cookies...stuff like that. Not like chips, dips, pizza and etc. We all have different fixes. Bulimics come in all different forms. Binge, exercise like a mad person. Binge take laxatives or some binge and do nothing. In my quest for knowledge and treatment, franky I have met only a very few who do not have an ED. My husband being one of them.

I know I still have a distorted image when I look in the mirror. I know I buy my clothes too big. I know I drown in my 12's and even when I wore a 6. I estimate I am really an 8 now with this 25 lb weight gain. I weighed myself this morning, I am 132.2lb. I use to crumble when I went over 110, which was my mental maximum and 99 lbs my minimum. I feel ashamed in a sense when I see 132 but I am able to work it out in my thoughts and accept it knowing it is there from being ill and not because I was "bad".

Ah, the mental games we play with ourselves. Two opponents. Me and my thoughts.

Ireland, I've never been. Looks like a wonderful place on the documentaries I have seen. Red flowing hair, I take it you are Irish?

How did your appointment with your Hematologist go? My legs had been swollen but not red. Has your's gone down? I contribute mine to being on my feet all day with the landscaping contractors and it has been extremely hot down here. Heat index 115. Temp 100. I also have a knee that has given me grief for years. Bone on bone with the knee cap. For you, is it vasculitis again? I hope not girl.

Oh, when you say Myrtle, is that Myrtle Beach here in SC?

The weekend is almost here. I do hope you are better than at the beginning of this week and are able to enjoy another grand weekend.

Hope you are having a feel good morning.


08-09-2007, 07:22 AM
I am mostly pain free today. The knee pain I mentioned was IT/FMS pain. It is hard to tell the difference honestly.

Myrtle was indeed Myrtle Beach, SC. We had a lovely time and weren't too far from you :) I've only been one time before this one. I grew up close to NC beaches so I didn't go to an SC beach until I was an adult.

The swimming sounds great! I love to swim. My gym doesn't have a pool which is a bit of a problem. Our membership is up soon and we are considering a gym with a pool, but my personal trainer can only train at our current gym and I'm afraid to give up our relationship.

I am regaining control over my eating. I definitely have an ED in that I am a complete emotional eater. With my illness over the last ten years I have gained an extraordinary amount of weight and am only now really addressing it seriously. I pretty much ate anything I wanted without thinking about it. I know think about it all the time and make healthy choices. As you say, my binges were on healthy foods as of late. I ate lots of healthy food...I mean LOTS of healthy food. The portions are going back to normal now. I have weigh in tonight and I'm not looking forward to it because of the gain, but I am accountable for the gains as well as the losses so I'm hanging in there! I'm chewing LOTS of gum now :)

08-09-2007, 08:46 PM
Hi AB,

I know, food is good. I say to my animals..."Who wants something good to eat.." Meow, meow...Pookie screams and my dog Riley does leaps and bounds just for a biscuit or two. Such a wonderful sight in the morning. Makes me chuckle.

It is hard being a mindful eater especially being an emotional eater. I ate when I felt like things were not in my control. Weird, my way of gaining control was to well, ah..vomit. Crazy, eh? Why that thought or action ever came to be, I have yet to find it. See, in the end it really isn't about weight control for us with an extreme ED. It is us thinking we are in control when in actuality we are out of control. If we were in control, we would stop at will but we reach a no turning back point and can't without being diligent and mindful. Changing cognitive behaviors. Being more conscious.

When we have a set back it makes us better equipped to handle the next bout. So, if you have a gain, next week... a loss. Always look back on your progress and remember what you mentioned earlier in a post. You don't want to have to go through that again. Even if those wise words were about smoking, it can be applied to many things we live through. You're doing good, girl.

I believe Myrtle is oh, about 1 3/4 hour away from me. I took my brother there when he was here last summer visiting from Seattle.

Bought my husband a snorkel set for the pool. What a big kid he is! He loved it. And for the dog, a lifesaver ring to play fetch with. She loves the pool too. We've been swimming after 6PM. I'm afraid for my skin.

The fence is up. The irrigation, sprinkler system has been relocated...now the sod, trees and flowers. After next week, I am done for the year. No more major projects.

The days here are...one word, HOT. The ice cream melted before I even left the store. The clerks at Publix were perspiring as they scanned the items. I learned as of today, go to the grocer at night when the automatic doors are not opening and closing all afternoon.

As a whole, I am feeling pretty good. I hope you are too.

Have a great morning..and now, I'm going to have a good sleep. Almost midnight.

Over n out.

Be well, Ashley,
Marijo O.

08-10-2007, 01:51 PM
Marijo -

I only have a moment, but I didn't want to head away from you this weekend without saying hello! I did gain last night. About 4 lbs, but I'm back "on" and I am feeling pretty good about it. I'm on my way to work out now so that will help me relieve all the weeks stress and have a hopefully relaxing weekend.

I'm so pleased to hear your pool is up, running and being used!!! Ending your projects sounds like a good end to a full summer! We are still finishing up a few projects of your own.

Pamper yourself this weekend and enjoy as much air conditioning as you can soak up. I know I will!

Have a great weekend.


08-11-2007, 04:57 AM
Hey Ashley,

Four pounds. Not so bad of a weight gain, considering the extremes your body has been going through. Quitting smoking slows the metabolism down, new job...marital communication stress, IT. Those are whoppers. Me, I'd have gained atleast 10. Even though it was a gain, remember you lost twenty some earlier and you are resuming the game plan. I'd say, good going girl!

We all say tomorrow will be better, but we can always start with the next hour. Me? I would always say Monday...but even if we do feed the craving we can resume our regime after consumption.

Yesterday I went in to get my bucks cleaned and got crowned too. Queen for the day. My filling had been cracking, so I said go for it since I was having a good day. Dental technology has come along way. He made my crown right there. It was amazing to watch. A camera scan my mouth, created a 3-D. Then they inserted a square like a sugar cube of ceramic and the machine chiseled it. Like a diamond cutter. No temporary crown, no waiitng four weeks. Viola, just like that.

Oh, I don't think I mentioned in a earlier post about a fertility site. www.fertilityfriend.com When you register you can create temperature graphs of your cycle and it keeps your history. I still use it to track when I had a cycle. Did you know when your temp peaks for three days in a row then drops to normal you have ovulated. The site also has a wealth of information. Check it out.

Hope the weekend is being good to you...till next week enjoy your life.

Be well,

08-15-2007, 10:56 AM
Hi AB,

Hoping your week has been off to a great start. Mine, nothing to rave about. Nothing unusual.

Rain has managed to miss our neck of the woods. Still sizzling here by day and enjoying our evening dips. The water is bathtub warm. Not really refreshing but it feels nice on my underattack body. Lupus has been sniffing around me again. Making it's presence more known..again.

Weird, at night I am having a reaction to something. Wondering if it is Requib. Not every night. More like every third night. Three times thus far. I get all stuffed up in the sinuses, can't breathe through my nostrils at all. My skin feels creepy all over. Like crawling, or hyper sensitive, that I have to remove my wedding rings, glasses, any clothes and just lay under a sheet. Wrenching my hands. Rubbing my scalp and face. Tightening my leg and feet muscles. My legs and arms get so achy, like cold achy. I had to rub and squeeze my muscles. I just don't really have the words to explain it. It drives me to tears because I want it to stop. And my prescription causes such drowsiness, but I can't sleep. My brain wants to, but my body, inside is on hyper alert...crazy.. Ever have that?

So, what good things have you been doing for yourself?

Work? Over worked?

Personal trainer wearing you out?

Communication still going good with Steve?

Just checking in to let you know you are thought of today and hope Lupus has been hiding and not lurking about.

Enjoy this afternoon,

08-17-2007, 07:30 AM
Are you saying TGIF today? I hope you are busy, busy at work and not at home not feeling well. Odd thing to say, by having IT you know what I mean. In our case the latter would not be such a good thing...

An extra prayer for you tonight, just in case....

08-17-2007, 09:33 PM
I am fairly new to this website and have read several posts, but yours captured my heart. Please know my prayers are with you. Please do not stop writing. You have such a unique way of expressing your pain, and that HAS to be healing in itself. God gives us all talents, and for me, I believe you have such a wonderful way of describing your pain and suffering. Lupus is such an abstract disease, that not even most doctors can understand how patients feel, much less some of our family members.

Naw Naw

08-20-2007, 06:48 AM
Naw Naw,

Thank you if your post was for me...

Today, I really have no words for the pain, worn wiped out feeling I have. I just feel like a natural bristle doormat that hasn't been shook in years.

I overdrafted on my bank reserves Saturday, being normal, yard, sun, lift dig, swim. Took to the bed Saturday 7PM and just rose this Monday at 8AM. Rising for the thirst and relief. If I could I would have worn a Depends like the female astronuat who was possessed with jealous love.

We all used to live by routines, appointments on a calendar, wishing we had that life now..today now I wave my fists and cuss at them because I have three of them on my list today and barely any life to take a shower.

I am in the hole that I have avoided for for last two months plus. Ugh. I forgot to go around.

I wish me well,

08-20-2007, 08:04 AM
I just want to say I read your first and last few posts on this, have'nt read in between posts. I must say, I am so glad you are doing much better now. Getting things done, ect. I too have had bad days/weeks.
If I may comment on your posts......I so enjoy how you write, your thoughts are so perfectly described, and interestingly creative. Your words read brilliantly. I think you should write some kind of a book. Not kidding here. Somehow, your writing captures me, as if I were reading a book......
Once again, glad you are doing so much better than your first post.

08-20-2007, 09:27 AM
Oluwa -

I agree with the others, your writing is very visual. I always enjoy reading our conversation.

I was not good last week, but fortunately it was mostly a virus, not as much IT. I do know what you mean about the wrestles body, I was going to ask you about that today as a matter of fact.. I have had it a lot lately. Mine seems to be more in my lower back, but it is such a strange experience to be so tired and not able to rest. The constant shifting, searching for a comfortable position that will allow a body at rest. It makes me crazy. I get up and go to the living room, stay up for awhile then back to bed, then back to the living room. Sitting up, lying down. Torture. Torture.

So I'm back at work today and things are strange. It is such a new job that I don't quite know how to handle being out yet. Don't know how the absences will reverberate through my world.

Communication has resumed and I have to say things are better than ever. I hope that I am still attending his needs as much as he needs. With illness last week I was neglecting them, but I am trying to be more aware of his emotional being. It is so easy (with him) to be cared for rather than the caretaker. I've never been with anyone that took care of me like he does. My soul was often abused before we met and I sometimes become selfish for his care. I'm learning to give back without giving myself up completely. knowing when I need and when I give is not always easy, but I'm learning.

I still envy your pool. I hope IT is staying away. No rain here for what seems like forever. Lots of super hot days with no reprieve. My plants shrivel in the drought and perk when I water them. They are in constant flux between droopy and their desperation to live up to their full bloom potential.

I hope to hear from you today. Hope you are well. I want to hear all about your weekend. You've been so supportive lately...all give no take.


08-20-2007, 10:03 AM
Hi Kimb,

Well, thank you very much. Me post is your post, chime in anytime.

I feel I have nothing to write, publicly..my life hasn't been a captivating one and I like non-fiction over a novel. My darkness can create pity and empathy for me or light for another. I'd wish it always to be the latter.

Be well, and thank you again for your kind words...

08-20-2007, 10:24 AM
Oluwa - Check your private messages. I like your new avatar, by the way.


08-20-2007, 10:39 AM
There is the Librarian Ashley,

One appointment down for the day two to go.

Well? I am not. But to you first...a Virus! Is it gone? That can wreak havoc on a body that is underattack already. Worry not about the employers..state job to state job were you able to transfer any leave, sick leave? Are you on a ninety day probation?

Marriage is a weighing scale I want to believe. When one end is light the other spouse has to sneak their foot in from behind and press on the scale. So don't feel like you have been neglecting Steve. We take turns towing the wounded spouse around. Sometimes with words, sometimes with labor, sometimes with a hug. Tomorrow he just may need an extra dose. Worry not, your turn will come, you haven't dropped the rope, you just left a bit of slack in it for Steve to pull, that's all.

My words about marriage is something I live by, even if my husband isn't on the same page. Maybe my words are just wishful thinking, because lately mine has been on the mend pile and my street has only one lane. Either I'm ahead or left in the dirt. Unfortunately I think it is the latter. Really, neither one is better. More often than not I am picking up the slack, tiring from towing. Times I ponder hummm... there is enough rope for me to make a tight fitting noose.

Me, not well. Mentally and physically. I made a huge overdraft and I am afraid I didn't have overdraft protection. I feel like a dirty old shroud whose lost it usefulness. Yellow stained and frayed edges.

I met with the retainer wall supervisor this morning, wasn't pleased with his Friday crew. I meditated earlier to stir up my testosterone so I could be face to face with a daunting man. This is not like me, to puff out my chest, but I would not yield. He left saying he will be back with a new crew...

Two more appointments, then I am through. The Opthamologist and Dentist. Oh, how I want to cancel, but might as well get it done and over with and take the rest of the week to recoup and contemplate what will a girl like me do.

Like you I was abused. My soul I protected, but physically.. my mind protected my flesh and went blank on itself. Partial images flicker like a deck of cards, but with IT now...it seems so unreal, even blurrier in the Lupus fog.

Deep breath...fluff the hair, onto Dorchester Road I head,
Be well, wish me well,
Oluwa, aka Marijo

08-20-2007, 11:14 AM

Got it.

Everything that Lupus is to me, I have it today. Ugh

Oluwa aka Marijo

08-20-2007, 02:11 PM

Sorry to hear you aren't well. I was hoping your husband had begun to tug. I know you talked to him and that things improved and that they had gone back to where they were before the talk. I was really praying for him to carry more than his own weight. Marriage is so very tricky. Even more so with IT.

In my immediate family we talk about overdraft as gas. My tank is full, I have a quarter tank to give, the price of gas went up, etc. I like the overdraft analogy because sometimes you do have overdraft protection. I wish I could make a bigger electronic transfer to your account, it is hard online. Just know that I am praying for found money. (Check pants pockets?)

Have you found the overdraft notice point? I'm still working on finding the place where I know I have to stop for awhile, but I am still uncertain of it. I seem to forget interest ever time.

I'm so impressed with your firm attitude regarding the crew. I often build myself up for these conversations and then peter out. I must say I'm really good with bad wait staff service, but it is likely because I did the job myself once upon a time. I'm also great with plumbers because my dad is in the plumbing business so I've seen that dealt with many many times. Good for you. Steve always says that they are my employees and that I should insist on the same work that I would if they worked for a business that I owned.

I'm proud of you for pushing through with your appointments. i know that is never easy when you feel like canceling. I often wonder if the commitment issues I have with appointments is courtesy of IT or if I'm just not sure if I'll feel well enough when the day comes.

I too was physically abused, but the emotional scars (separate abuse) are significantly harder for me to heal. I have a lot of abandonment issues.

I was pulled to a meeting and have completely lost my place...

I'll write you again tomorrow.


08-20-2007, 03:54 PM
Hi Ashley,

My pupils are like the size of nickels. Like a solar eclipse no hazel green shows just a black hole. Had them dilated. Base line for Plaquenil. They're healthy. He said fear not, eye damage is so rare he has never seen a case. He said it was once thought a person on Plaquenil should visit an ophthalmologist every six months...but now, annually is fine.

I checked the pants pockets and all that was in there was gray and red lint and some beach sand. Flipped the cushions on the couch and all I found was popcorn seeds, a corner of a dog biscuit and a bobby pin.

Words are your electronic transfer..thank you for the transfer.

I still wrestle with the man. Perhaps I married too young of a man. Not that 30, at the time is young or too young. It is young when you are 41, now 46. I told him the other day that he acted like he was 12, but then again 12 years old do grow up and you haven't yet. I said...You have been 12 for 6 years. I said I am tired of being a Mommy and I went to bed Saturday night and woke up this morning, Monday, 36 hours later and 4 pounds lighter.

My body twitches inside like little bubbles popping and everything feels sharp. My shoulders feel like 90 degrees. Everything that should feel curvy and round, feels like straight edges, sharp, to a point and hurt. I want to be numb. I want to hide.

I think my mind and heart hurt more than my skin hide.

Physical abuse, for me... there was none. My mind protected my flesh, the flesh from sexual molestation. I protected my soul, from verbal abuse. I was never appreciated but always was compared to. Maybe that is why I have such great empathy and even feel the pain of a calf in a crocodiles mouth.

I am sorry you were abused, I am sorry you were left behind. To change the past we have to change what we associate it to. You can write on the page, words to tear you down, or you can erase the page and write how it lifted you and made you into the delightful person that you are. If we don't... we have never taken back our control from the abuser. In a sense we left our hearts, minds and/or our souls with them. Now go back and get yours AB!

Well, now that IT, the contractor and my spouse had their day with me..the night is mine. Orange Polka dotted PJs. Coke on ice. Hadn't had one in years. Sugar, ha...here it comes Lupus. Hopefully a good sedating western on a movie channel. Pookie Monster, cat snuggle on my arms..sounds like a good night to me and it is only 7PM.

Good night.
Hope all of us wellness in the next light,

PS...I have a butterfly....and I am a kitten...
.. by my name...woohooo,meeeeow!

08-20-2007, 07:17 PM
Ah, Marijo...

The sharp edges, I feel them too. It has been a good long reprieve for you though, eh? Not as bad as it once was. I've seen you on days that you would have given up if you could, yet you are still finding little pleasures. Coke on ice...mmmm. Sounds delish.

I have let go of so much hurt and anger. I am so much stronger than the other women in my family because of the abuse, that it is one of those rare things that are so evil, yet such a turning point in ones life that it is difficult to regret. I've often said that I would not be the person I am without the abuse or the abuser. It is true. I can't imagine the person I would have turned into. Maybe better? Maybe worse? No point. I like the strength I have.

The abandonment issues aren't really abandonment issues, but loyalty issues. I value loyalty far more than I think I should. I see disloyalty where others might not. Loyalty MEANS something to me and I insist upon it. Something to work on?

Your cat sounds lovely. A comfort when no other can be. I know this feeling. I feel that sense of peace when my cat lies next to me. Purring. Just breathing so serenely...

I hope you awake with a fresh body. Try not to get sucked into the black hole...You are in my prayers tonight.


08-21-2007, 06:34 AM
Hey you,

Someone up there was listening to you for me..thank you. Indeed, I do feel better. When I went to bed I didn't utter a word or a thought.

I did take a dip before I bedded down for the night. Floating and watching the stars framed by the trees tops helped clear my ugly thoughts and to forget about the pain.

Want an avatar like mine or similar?

Friday was such a trying day, the sod guys miscalculated the sod when they bidded on the job and are short almost 1000sqft. A big, big and costly error. The retainer wall look just like that..a wall. I drew a plan so it flow and dissappeared into the landscape...they accomplished that yesterday. I am haven't such of a time with the contractors and I am not looking for the cheap ones either. I am learning, cheap or outragously price products, doesn't matter it is the same ole' crappy contractors who install. Know, I am not picky...it just good labor..I have yet to find. I am tired of grimacing...the headaches.

And too, my husband reminds me of a dictator at his desk. For a spell now, I've wondered where is the man I said I do to? Maybe he never existed and it all was a charade. Scary thoughts.

I understand exactly what you mean about loyalty....I feel exactly that way too. Personally, I think people should value it just like us. I think some don't put much weight into it. Perhaps our problem isn't so with much loyalty but the inability to forgive and see they are human, flawed like us..in different ways. With some, the flaws are deliberate and intentional and others they are probably victims too, lost but never look for refinement. And become a wound onto themselves...never sought healing. Sounding like a sausage?

Thank you for your evening post....

I will go look for some more enjoyment to fill me up today...hope you're at the brim with yours.


08-21-2007, 07:07 AM
Marijo -

I'm doing pretty well today. Work woes getting me down, but I'll talk about that another day. I'm trying to focus on the positives of work today so no good to talk about the annoying.

Physically I'm doing about a seven, emotionally about a three. For some reason lately I'm very sensitive to others comments. It is beginning to make me lose confidence and always difficult to tell if the cause is IT making me more sensitive and defensive or if there is a real situation to be dealt with. I think I have lost a lot of my need to be the most successful in everything due to the perspective brought on by IT. In someways this is a good thing, but others...still learning.

I think you are completely right about other's scars. My husband and I have been fighting a silly loyalty battle for ages. He is responsive to my loyalty needs, but he was raised with complete loyalty from his family so he doesn't understand my need for it.

You are not talking like a sausage today...I think all of your thoughts are clear and solid.

I'm so glad you are feeling better today. I was very concerned about your needing support to get back on your mental and physical feet. I don't know what to say about your problems with your husband. A response to your concerns is going to take some thinking. Have you gone back and read the items in our conversation related to your husband? From the beginning to now is not an extreme change, but a change nonetheless. Is it because you have become more comfortable being honest about your relationship with me or have things really changed (or stayed the same since as of late you have referred to many of his attitudes as a reversion to a previous state of being.)

Have a good morning.


08-21-2007, 08:59 AM
Hi Ashley,

Maybe this idea can help your husband to understand loyalty without... Waht would he feel if he lost a limb. For most it is a given, for some born without, for some lost along the way. Loyalty is something we want, expect and want to rely on. The saying...He's my right arm man...

I think our medication, disease, hormones all toss into a salad bowl makes us emotional. This week I have been a bit irritated but finding my way to being nonchalant about the whole mess.

I wouldn't say I am being more honest about my marriage, just more revealing as he changes back and forth. In and out, hot and cold. In the beginning when I first posted he was out and cold...during these past few months...tepid. Now out and cold again. What I post is....what I believe and feel about marriage, my approach and what it means to me, what my husband believes and feels is from a different culture and also an immaturity that surfaced after the I do's. He is a self work in progress like most of us. Wanting to be the best for ourselves, our families, for our faith. His immaturity sidesteps him and he gets frustrated when he can not articulate his feelings into words and stammers, puts on his IPOD and shuts the door and at times says awful things.

I feel he is like a child who drew this abstract, that is suppose to be a farm, with cows and horses but looks like scribbles of blues, reds and purples. And I always have to say, oh it is just so lovely, this blue, blue thing here. Let me tape it to the fridge, honey. I understand encouraging, praising, acknowledging but at this level for a grown person at a constant pace. I am exhausted. When I don't he crumbles and all I hoped was it would help him grow emotionally. Doors close. To me a close door means shut up.

So, this is why I kept my woes and ailments pretty much to myself and not with him. There is only room for one in our marriage that can be ailing and that is him. As strong as I am mentally, being physically ill all the time, it is weakening that mental strength. But I will gather and scout for more. In a book, in a dream, in my Mum's journal, in a prayer.

I think it is time we sought outside help. I will look for assistance this very moment and schedule a session. I think I need to hear my voice complain out loud and have it validated or help to steer me back on course.

As the IT saying goes...I am sick and tired of being sick and tired. I shall seek a solution. I am off.

Thanks for reading an earful...
Lunch time....enjoy. I think I will carve into my whole pineapple...
Be well,
Marijo O.

08-21-2007, 10:15 AM
Marijo -

We've certainly considered outside counseling ourselves. I say we, but it is more my idea than his. He doesn't really understand how a counselor could help, but I feel the same. Sometimes having a different perspective is so helpful. I think if I could hear myself telling someone about our relationship, my problems with him and vice versa, it would help. Who knows. My husband sees this as an affront to our marriage. Why can't we just handle it on our own? He has a fear that I would start attacking him (his form of the loyalty issue) and that the therapist would just agree with me. That it would be some sort of ganging up experience. That, of course, is so far from what I would like to have happen I tend to forget this fear of his.

I understand the child thing as well. I don't have to deal with it so much with my husband, but I've seen it a LOT in other relationships in my family. It infuriates me to see. Support and be supported. It should not be so one sided. My cousins husband is such a child that he expects more attention than even their child. It is sad and a great source of dismay in my cousins life.

I'm always happy to get an earful.

I'm off to a meeting...


08-21-2007, 11:26 AM
Hi again,

Well, I did it. How lucky a cancellation and she penciled me in on her calendar for tomorrow. Spouses allowed. I will ask after he is finishes his day today.

I hope he doesn't view it as a show-down. I want it to be show me, show us. Not a shoot out at the OK Corral or kick him while he is down. I am open to know maybe my approach to him is all wrong. Not just the " okay honey, it is beautiful...lets hang it on the fridge" but in other ways. Maybe I enable all this. Maybe she will let me rip the head off the teddy bear and I can be the child for an hour. Batting floating in the sun rays, black button eyes dangling by a thick thread...ah....Maybe that would be liberating in itself.

Oh hells, it infuriates me that I have to resort to such goo-goo tactics with him to maintain a bit of tranquility in the home on those off days. But it is catching up, back firing as the anguish I tried to hinder is now finding its way to me through the back door. And it bigger than when I tried to divert it. It grew, now it has taken on a life of its own. It's life is my anger.

My anger equals stress, stress equals IT, IT equals exhaustion, exhaustion equals self pity or it can thrust me into doing something. I choose the last. Do I bring a box of Kleenex with? All my poems? Maybe they can tell my story better than I can orate.

Still at a three emotionally? Though I have a mouthful I can handle a earful too. You haven't lost confidence you just forgot where you put it. It is there.

How was the meeting?

A week's beginning feeling in turmoil can only lead to a calm ending, ya think?

Hugs till....
Marijo O.

08-21-2007, 01:22 PM
I'm so impressed that you called and got in so quickly. Don't take the kleenex, she will have some in the office. Do take the poems, but if you can make copiesthat would be good because she might want to read them on her own if you are comfortable with that.

I'm praying for a smooth talk with your husband. An openness that you couldn't possibly anticipate. This conversation will not lead to more turmoil! (I hope:) )

"My anger equals stress, stress equals IT, IT equals exhaustion, exhaustion equals self pity or it can thrust me into doing something. I choose the last." I second this completely.

I think I'm at about a six emotionally. Things took an interesting turn at work today and I think it was the first time I've been able to confidently express my work passions in front of the right people. It isn't a political thing, but all the confidence came rushing back when I kept getting nods of agreement from my colleagues. It was quite a boost. It also made me realize a dynamic around here that had previously left me quite confused and down trodden.

The meeting was spectacular. I know that is strong, but it really was pretty great.

I'm leaving tonight on a happy note. I pray for your calm and his receptiveness...

Thank you for your electronic transfer today, I needed it. I hope that you got something in return ;)


08-22-2007, 06:33 AM

How did things go last night? I've been anxiously awaiting the news.

I'm in an absolutely fantastic place today. I went off the Lexapro on Monday and I think that has been behind my weird emotional states. You see I've never been able to tolerate antidepressants. They usually make me insane at the 5 mg level. Before I was diagnosed with FMS, they tried all kinds of things. Once, my mother had to come stay with me for a whole week because of the effects. So they would try something else it would make me feel like I was going to come out of my skin. They would stop it and I'd return to normal. After my FMS diagnosis, they finally realized that it wasn't anything that an antidepressant would work on.

When I came off of the prednisone, my doctor put me on Lexapro to counter the mood swings I was having from the hormonal normalization. It did not make me crazy. It actually worked really well until about three weeks ago when I started having mild symptoms similar to those from previous antidepressants. I called my doctor and he said taper off. Today I finally feel like my self again. It is really pretty great. My right arm feels like someone is tearing it out of the socket, but it is so much easier to deal with when I feel so uplifted emotionally. I know that all sounds crazy, pain is pain. In reality though, the pain is bearable today BECAUSE I'm not depressed or emotional or mood swingy...

Hope you are having a good morning. I'm all ears...


08-22-2007, 04:30 PM
Hey you...Sigh...I got the dates mixed up with the weekdays. My appointment is tomorrow.

Woke up all jazzed, least I thought was. I created it? I summonsed it? I realized my error went grocery shopping and came home and went kapoot. Kick my heels off, stretched out on the couch and that was all she wrote. Now it is after 7:30PM...what a wasted day...

A feeling of reality drifted in..this is my life. I am tired of trying to be alive.


I used to be funny.
I used to laugh.
I used dance.
I used to be pretty.
Now I am not.
I am home sick.
I want to go home.
To the home I used to know.
The home I used to know
Was me.
It exists no more.

I wish us all wellness, even me,

08-23-2007, 06:21 AM
Marijo -

I'm sorry that you feel yesterday was wasted. I keep longing more and more to stop using all of my energy for getting up and going to work. I wish I could sleep on the days I need to rather than getting up and dragging myself in. On the other hand, I am afraid of the worthlessness that I feel when I do stay home. I hate this freaking disease!!!

I used to be...

Outgoing and loads of fun.
Able to stay up for a midnight Rocky Horror Picture Show that has been running since the original came out.
Go listen to live music and dance (or even stand)
Travel anywhere day or night on the spur of the moment
Talk all night to my best friend or my husband
Find passion in art and writing (my own or other's)
Walk on the beach and lie in the sun for hours and hours


I struggle through most days
I'm so tired at 10 am that I'm not sure how to make it to 5, much less 10 pm!
Listening to my Ipod and remember what the bands were like live
Sit on the beach in the evening when the sun is beginning to wain, then take a pain pill from the excruciating throbbing in my knees and ankles from walking in the mushy sand.
Happy to wake up in the morning not so exhausted that I can't move.
Talk until about 9 pm, then beg off so that I can go to bed
Unable to remember that I only put my slippers on to "run" out to the car only to realize that I've inadvertently worn them to work (Today ;) )

Take a look back at your previous posts, I beg you. You have had energy filled days when you painted a whole room and worked in the yard. This is just a trough, you will have another peak...

I'll be praying for you all day...

08-23-2007, 07:39 AM
Hi Ashley,

I can't do Lupus and marriage anymore. They both drain me.

I rather be alone or be not at all.

Having empathy, understanding, compassion can be harmful especially when given to another who has absolutely none themselves.

The energy moments are fleeting and IT lingers. I wish it was the other way around.

I run, I hide, I open the umbrella and still there is that dark cumulus cloud following, waiting to unleash it's dark energy. I've run out of places. I could always find sanction in me, now she is gone.

I know my black painted walls in my head are temporary and can be brushed over with hues of cool blues and warm oranges. Today, for now I do not know how to color me yellow. Soon it will pass and somewhere I will find a gallon of latex gloss. Just not today.

I don't know how to approach my counseling session with my husband. Over and over in my head, too many words, too many moans, too many words can seem like I am taking aim. I don't know how to walk the fine line. I am afraid if I open my mouth it will have the effect of Pandora's Box. Unreversible consequences. Maybe that would be good. Maybe it is my out. We all have the secrets about our marriages. Praying it is a phase. Praying we can fix it alone. Usually a person tells at least one, I have not told that one.

I know Lupus wreaks havoc on my cognitive thinking. Depression, anxiety..chronic dull pain...the future. My self-concept seems to be impaired.

When I write of happy, sun, dangling leaves and hair lifting breezes it is me....all me, but today is the dark I spoke of earlier in another post. Darkness took shape ah a few years ago...when all of me began the roll down hill. I've managed to grab a chunk of turned turf, a dead limb or a stump as I rolled. Today I'm rolling, and looking for something to grab ahold.

Today, this is me...I wish I could be that woman who painted the garage and guest room. Today I will just Stand and let the Lord see me through. (Donny McClurkin).

Praying for wellnes for all, even me.
Oluwa aka Marijo

08-23-2007, 09:53 AM
Marijo -

I feel everything you describe. It is difficult to hear your struggle and I know that my advice or even just lending an ear are insufficient on some days. I feel that so strongly today. All I can say is that I'm praying for you. Oh, how I am praying for you.

Though I've never felt the total role downhill associated with a difficult marriage, I've felt it in many other places in my life. I've always called it the tailspin. It sucks you down into a black hole. Sometimes the hole is closer than others.

Go to your therapy session with as open a heart as possible, but do not hold things back. You never know what God has in store. He will see you through this no matter what the outcome. If there is anything I can do...

On bended knee, lifting you in prayer...


08-23-2007, 06:34 PM
The fury was unleashed and I left.
Unable to see through the swollen tearing eyes.

I am tired, too tired to write.
Maybe more in the next light.

Thank you for speaking to God for me.
I have a few words for him....
"Please help me. I feel like I am on my way out."

I hope he hears me and your words tonight.

Good night, Ashley

08-23-2007, 08:15 PM
I"m certain our prayers will be answered. Hold on, help will come.


08-24-2007, 05:11 AM
Marijo -

Steve and I thought about you all night and into this morning. We've been praying so hard for you. We are both so concerned. Did you leave the therapy session or did you leave your house/husband? Are you alone in South Carolina? I know you are a recent transplant, do you have people to be with? I know you probably won't feel like writing, so I'm not anticipating a response today, but I desperately want to hear that you are still out there in cyberspace somewhere.

Prayers continue...


08-24-2007, 10:54 AM
Here I am...am at home.

Woke with a feeling like that of a hang-over. Not from a liquid in glass but emotions from the heart.

So many words, so many days, so many actions, so many lack of actions it would take a post that surely would last 10 pages.

I left at the stroke of her hour, crumbled faced and tissue torn to shreds. She claimed to understand my pain and claimed to understand my hurt. I told her the hurt stopped a few years ago and has been replaced with anger. An anger I never felt with another. She said my husband always says I am so wonderful. Wonderful? A word he would use to falsely show her he was a decent human being. It has nothing to do with who he thinks I am. I told her I wasn't wonderful. Perhaps I used to be, but I am not now. I am a person full of wrath.

My husband's emotions and actions tither between adolescent and a teen. An adult uses their frontal lobe and I swear his is underdeveloped.

I gained nothing, not even insight while the clock hand ticked away 60 minutes of my life. She was so animated I would never consider her to shrink my brain.

In the SUV, on the way home, I gasped for air, unable to find by breath. Fast rapid short inhales I struggled to find the bottle that is packed with the blue pills. Xanax. Drove to the nearest fast food. A Coke to go. Sat in the parking lot till it took affect.

Debating do I go to the clothing store buy an outfit then to Target to for toothpaste and cream and locate a nearby Inn. Instead I went to Pier1 and dropped a grand and onto to Best Buy for a 40" plasma screen. I decided to draw a line, the upstairs in our house is my apartment for now.

I asked him when I arrived home, to remove his even bigger Plasma to the downstairs family room. Respect my space, I don't know where to go. Don't make my life like The War of the Roses. This being the short version of the night.

Huh..all because of Lupus you may wonder. Naw, infidelity, lies and deceit and feeling like a 46 year old fool.

I've played house long enough.

My face is so bumby, tight and red, I've now developed a rash on my belly. My eyes feel like grit and my joints are so inflammed not even four Ultracet brought down my pain. I let the current stress break me down. I am at a place, the place when I wrote the very first line to "I go something like this...."

Worry not, I will find well. Thank you for keeping me in your thoughts. You now knowing makes three. Bola, the shrink and Ashley.

Life is good, it always is..even though we may not see it. I will flourish. Even a Tulip comes back after a year of frost.

I am well enough and you be well too,
Marijo O.

08-24-2007, 11:23 AM
I'm so sorry to hear what you have been dealing with, but so proud of you for standing up for yourself. Remarkably I've seen many many women put up with it for much much longer. Is he being compliant?

My husband is out of town this weekend and is taking our laptop, so I will have no access to the outside world via internet. Feel free to call or send me a text message at the same number I pm'd you. Also, if you have AOL IM I think you can actually send me a message through there as well and I can respond to your IM...I can't remember how this works.

I will be praying for you throughout the weekend.


08-24-2007, 02:11 PM
Hi Ashley,

I will be just fine. He has maintained his space and our paths have not cross this day yet.

I chose the wrong shrink. Her method seemed a little unorthodox. Perhaps another or keep the line drawn.

My husband is in a sense of denial. I believe his culture allows it. Being British Nigerian he did have the drop of being raised as Nigerian. Wife is second. Wife is essentially a domestic servant. And it is common to have many wives which we would call affairs. Many being divorced and married over and over again. I didn't realize this till after the fact. His father having 4 and his mother having 3 herself. Between the two I think there are about 13-16 children. Thirteen the siblings claim but I think there are 3 somewhere by the father.

I think the mix evolves from religion. Nigerians were once Muslims from yesteryears. His family are practicing Christians. His mother was always a Muslim and converted over recent years. His father was always a Christian. Despite being Christians the residues and treatment in some aspects women are a subclass in their daily lives.

From his sisters, the men are beginning to see and learn we are equal and the importance of the family unit. One unit and not many branches for offsprings.

My husband declares he is not like that but by his actions is some areas I would not agree. He tries to be a better spouse, but something inside him keeps him in denial. He says he understands, but his actions say something else.

Do I dislike him? No. Do I love him? Yes, the man I met. Do I want the marriage to work? Yes, but it will not unless he understands the hurt, the betrayal he has caused and starts a new chapter and doesn't repeat the previous chapters. He utters... get over it, but I say I can't because he constantly reminds me of his mistrust in other ways.

He is a man who has lost his affection. He is a man who seems to have no empathy. He is a man who hasn't developed emotionally for a relationship. He is man who never had a mentor. He is man that should be awarded an Oscar becuase while we courted and were engaged he is now not the man I married.

And me, I walk around with the word FOOL stamped on my forehead. Feeling my heart and trust has been marred.

With lifes crunches, we get marred along the way. Like illnesses we adapt, seek wellness in alternative natural healings or manmade.

I wish my husband was my hero, or even more so I wish he wants to be.

He is a man in distress and I want him to be well. When we married we ensure it was included in our own written vows..."in sickness and health till death do us part..." Right now, I have to think of him as ill.

IT is changing my skin pigment around my lips...wondering now, why that is taking place. It looks like I have been sucking on a glass, leaving a ring around my face..humm. How attractive. I even have a dark stain forming above my brow. Hyperpigment?

Ah, Lupus in all its wonder and surprises.

So, hey you, enjoy your weekend...hope you won't be alone, unless it is a wanted feeling. Mine doesn't leave till August 30 and will return September 7, I believe.

Pier1 had some lovely pillows, some on sale, sone not. New lamps and accent tables I bought. Not that we needed them. It it is my way of cleansing...change up, get something new for my eyes to gaze upon. It is all about color for me. I did tell you I was a shopaholic didn't I? A controlled one if there is such a thing.

My email address is listed in my profile. It is my AIM name too without the aol.com of course. MarijoHelen

Worry not I will be fine. I have a car, I can always go for a drive. I have camera. I have animals. I am in good hands...God and myself.

Enjoy the weekend...and thanks again for the electronic transfer. Having a bit of reserves makes my mind feel safe again.

Till...Be well,

08-27-2007, 01:39 PM
Marijo -

I wish I had actually gotten to read this on Friday...

I'm so glad to hear you in seemingly better spirits. I'm sorry the therapist/counselor didn't work out. Try, try again? I'm actually looking for one as well, so I understand the frustration. Even if you look at review sites, it is virtually impossible to tell what you are getting until you get there. It is a very frustrating process.

As far as your husbands back ground...It sounds like such an odd amalgamation of cultural backgrounds. So many red flags, I'm seeing fireworks. Of course I'm supportive of whatever decision you make for your life, but without some serious change, awareness even, on his part it would be incredibly difficult for me to move forward in that same scenario. My family is italian and I've always been amazed at how forgiving of the affairs the women in my family seem to be. It isn't as if they are okay with them, it is seriously as if they are able to just not notice. So bizarre. My grandmother's generation, especially, lives in this alternate reality that I do not understand. She passed it along to her daughters, but as I've mentioned in previous posts, my grandmother and I are incredibly close and she has opened up to me as of late about the horrors of wondering if there were other children of her husbands out there.

I've always said that I could forgive anything in marriage, that all marriages are at least worth the attempt to save, but the closer I am with my husband the more I realize what that betrayal would truly feel like. I'm not sure it would end our marriage if it were a one time "slip," but if this were an ongoing pattern of behavior after such a short period of time, I don't know how I would handle it.

I suspected you were a shopaholic, but I wasn't certain. Mine seems to come and go. I'm not much of a shopper. I don't like spending hours in a mall, but when I do go every once in a blue moon I seem to have no control over my ability to rationalize any purchase which of course is just one more form of unhealthy behavior.

I had the weekend to myself after all this weekend. I've been feeling like hell on and off. It may be Lupus related, it may not. I'm not quite sure, but I have an appointment on Wednesday so I hope I will find out more then.

I'm happy that he has maintained his space (is he still?) And hope that he handles this in the way that you need, but also honestly. I think we as a sex are too receptive to the lies of others. I myself like to believe the best even with evidence to the contrary. I fight this incessantly.

I'm heading out to a personal training session. I'll be back tomorrow and may even check in later tonight.

Have a good evening.


08-29-2007, 09:33 AM
Hi AB,

His family...red flags didn't flap till after we were married. Innocent dishonesty...hummm..I ask myself. Excusing, perhaps.

I am a pretty objective person. I would like to think I am. I feel I am.

My husband has now scheduled counseling session for himself. Two times a week starting on his return the following week. He didn't get it... the impact of the way he has carried himself as a man, as a person to me and to himself until I expressed my anger in her office. I felt like I was a run away train. Words and tears ran without a pause. She provided neither guidance nor direction. Personally she reminded of a cartoon character. Very animated. Eye expressions didn't go with the mouth gestures. Weird. Seemed as though she just utter, ooo..ahhh...oh..hummm. She did say you are very hurt. I replied, no, I am angry. She squeezed in; your husband says you are wonderful. I replied I was but I am not any more.

I even managed to speak of our attempts at INVITRO and she said like a Lucille Ball shake of the head, her top curls shook left to right she uttered, Thank goodness no children... what@#$%&*!! I thought.

That was all I wrote... I don't think I am ready for another tumultuous hour. So that is my life, today as I know it. Perhaps in a PM I will type details of the events of him and me to you.

My husband's day is a long one. To shorten it up...two words. Ashamed and sad. I will leave him alone to his own thoughts. Let his shame be his guide and will revisit it more after his counseling. At this time, I know his answers would never satisfy my mistrust, no matter how I asked. If he would answer, I would just ask it in another way and another way. Currently, no one can stop the questions; no one can answer them correctly. Because no sorry will be big enough. It is on me. As long as I punish him, I will be punishing myself right along with him. Anger requires more of me, more than I have to give. I gave all I had that day in WB...That's all folks office.

IT has been in and out. Reckless at times. Rash covers my tummy now. While sleeping I must scratch. No claw marks, just all bruised. And the Kool-Aid stain still encompasses my mouth. All my teeth hurt. I must tighten and created a vacuum seal with my lips and it puts pressure on my teeth. Wondering is it one of my prescriptions causing me to suddenly do this.

At my dental appointment the DDS didn’t give any indication that I am a grinder when asked. Perhaps, stress...

I slept two days straight, again. It is so healing on my joints and muscles,. It stops the pain. Ten Ultracets in a six hour period did nothing. When I woke up I felt weak. I think my muscles had started to waste. So, I stretched this morning, did a slow 10 minutes on the treadmill and this evening I will swim.

I totally concur with you on women's ability to hunt, sniff out lies once one is told. Then it is on us, confront, justify or question if our receptors are wrong. I understand innocent dishonesty but flagrant lies…humm. I can forgive but I don't forget. Not even with Lupus. It may fade, but remnants of it still exists.

How are you feeling...on and off in hell still? New symptoms or magnified oldies?

Midweek..gee the days are flying. Almost September. What happened to June and July. Heck...2007.

Is it Fair time in NC yet? Soon I think it will be here. I believe it starts after school does. I want to go. I am in the mood for food on a stick.

The sky is sweatshirt gray. No rain has fallen. It is teasing our newly laid sod. We will just have to rely on the tap...irrigation system. It is blending well with the previous grass. The lines have almost disappeared.

Here's to life and for at least today maybe you can say goodbye to Lou.

Be well,
Marijo O.

08-29-2007, 11:02 AM
I'm hanging in there. I'm more and more frustrated with IT. I had my appointment with my GP today and he is sending me to a urologist (sp?). I have to go back in six weeks for a follow up. All of the treatments available for my additional symptoms are no-no's when planning a pregnancy so it was a bit discouraging to hear I might just have to live with some of this for awhile. We talked about the possibility of my eventual disability. I'm not happy about that, but I can only take care of myself and see what happens.

I'm not good at forgetting either. I can forgive, but my trust once lost is not easily regained. I don't always like being that way. My husband often says to me, "I don't need the court reporter to read it back to me" He is teasing me, but I know that it is true. I remember too much about every conversation we've ever had, yet I can't remember five minutes after I take my plaquenil whether or not I took it.

The sky here is hazy blue with patches of unlocatable sunlight. I keep praying for rain. I need the cleansing and my plants need the strength. We have serious watering restrictions here and the "warnings" that existed for the first three times caught watering on an off day have been eliminated. Now you will be fined $200 for watering at an off time or on an off day. I've lived in this state most of my life and I've never seen drought conditions reach this level. My body even seems parched though the humidity is unrelenting.

I've had the teeth thing too. It is such a bizarre symptom. I have had a similar experience from sinus infections, but this is different more persistent and widespread. I have no real solution. I tried ambasol, but even as I administered it felt wrong. Not the right approach to the symptom at hand. Pain killers of any description were worthless. It didn't last an excrutiatingly long time.

Do you have another appointment with the counselor? I thought most counselors could see through the bullshit. My mother's ex-husband went in at my mother's therapists behest and at my mother's next appointment, though my step father had said nothing but wonderful things about my mother and been on his very best loving behavior, my mother's therapist said, "You have to get away from him. He is completely nuts and I believe there is a strong possibility that he will harm you physically." How scary is that?

My computer is being changed out today, so I won't have access again until much later.

till later...


08-29-2007, 11:05 AM
Bullshit That is really funny. I like that it replaced my "bad word" with that. Cow=Bull

08-29-2007, 01:31 PM
Oh that is too funny...Cow pud! I had to read it over and over, giggled at trying to figure it out. I didn't notice your last post explaining where the site replaced the waste that gets flushed.

And I loved, "I don't need the court reporter to read it back to me." I roared, even the dog woke up from a deep snoring sleep under my chair. I'm like you (well use to be all the time, but now most of the time) I could repeat a conversation verbatim and like you again, did I just take the pill?

Now the paragraph, where you mother ex's mother , your mother, his mother, the therapist mother...wow..I got lost at the first mother. My head is like a top inside now. I will reread it later. My petite pea size brain can't handle calculus today but I did understand the last sentence. Did she leave? Between trying to interpret cow pud and that..whew...who am I , I ask?

Urologist,...ugh Kidneys? Bladder? UTI? Are you really okay, considering the Lupus? Am I asking too much?

I canceled my orthropedic appointment. Now I have to listen to the sound of ripping denim for another three weeks.

No, I haven't search for another Shrink Wrapper..will you be mine? Actually I will be fine. A few letters to Dear Abby. Really, a bit of Christianity, Buddhism, Taoism, Martinism...and I will find my way.

Enjoy this Wednesday's evening..
Be well more so I ask,

08-29-2007, 01:48 PM
I have to say, your last post was just what I needed to end my work day. I really enjoyed it :) I laughed at the Cow pud too!!!!

So the confusing paragraph.
My mother went to a therapist.
Therapist wanted to see my mother's husband. (Mike)
Mike went to see my mother's therapist.
My mother's therapist said Mike was crazy.
My mother left.

Boy, even the simplified version sounds confusing. My step father was crazy and a therapist saw right through him was my point :)

Kidneys/Bladder/UTI, we do not know. I thought I'd hear back from my GP (they are scheduling the appointment) but I heard nothing. We are both concerned that it could be serious, but we have no clue right now.

I'll be your shrink wrapper if you'll be mine!!! My GP gave me a recommendation today...we'll see :)

You can ask me anything!

08-29-2007, 04:01 PM
Okay, now I am back in your orb...I gotcha now.

Being a host of IT too...what were your symptoms?

(Edited...My question was to sausage like, so I deleted it..)

My husband flies out in the AM tomorrow returns on Monday PM, departs again Tuesday AM and lands Friday late. Visiting his sister from my suggestion last month and a convention following. I think I will sleep the week away and order Chinese in....Steamed broccoli with shrimp and scallops. Garlic sauce on the side.

Have a good night..I think I need to lay down. My spirit is good but the carcass, well the word says it all. Not the British band called Carcass.

Sleep well,

08-30-2007, 11:05 AM
Marijo -

That chinese food sounds wonderful. Did you have that last night? I think it will be nice to have the place to yourself to sleep and think and not have to worry about bumping into him. I hate the discomfort of living with someone whom you have so many negative emotions toward. I'm talking like a sausage a lot lately.

I'm at home today. I don't really know what I'm going to do about my once a week absences. I've been like this since my last flare. I seem to be able to make it through Wednesday or Thursday, but inevitably I have to stay home and rest. I wish I could afford to go down to 3/4 hours or less, but since I took the pay cut to take this job, I really can't afford the fewer hours. I live in constant fear that they are going to fire me. I don't think they would, but I'm also not feeling like I'm pulling my weight.

Today I'm home with pain and exhaustion. I started menstruating today so on top of the normal aches, pains and fatigue it was the straw that broke the camels back. The sun streaming through the window is a laser on my eyes, through my head. I have sunglasses on... My back is excruciating and my hips, knees and ankles on fire. Stiff, achey. Mostly though I'm just tired. So very very tired. My spirits are unusually high for such a miserable shell.

I set up an appointment with a shrinker that I think is actually going to be good. She is high spirits but not a cheerleader. She spoke freely with me on the phone and wasn't all business, which I like. I think I like to make believe the shrink as friend theory. I haven't been to one in years, but she was very clinical and odd and I was embarrased to bump into her in a grocery store. It was all my talking and her asking clarification questions. At the end I felt I had to come up with something to talk about so there wouldn't be an awkward silence. This all happened when I was in college, before my Fibromyalgia diagnosis, when everyone thought my pain was in my head.

My husband also has an appointment on Tuesday with a different shrinker. We've decided that it isn't so much marriage counseling we are looking for. We each have separate issues to deal with, but we are a pretty effective collaborative team, so we need shrinkers that will bring our spouses in occasionally to collaborate. Does that make since? For crying out loud, we rarely go to a regular doctor's appointment alone. It isn't that we are nosey, but two minds are better than one. Especially with my brain fog, I always appreciate his presence and support. He asks the questions I forget and vice versa. So we will see how all of this goes...

I'm eating mango again. (random thought)

Don't dwell on my discomfort today...tell me how wonderful your day is going :) (Lie to me :D )


08-30-2007, 12:09 PM
Well, I just woke up from a an early afternoon nap...ah and was it lovely as the sun baked me through the sheer blinds on the butter color oversized sofa. The dog curled in a tight ball against my stomach..humm..is that where the rash comes from.

I flew down the steps without missing a beat, onto the hardwood I did a ballerina twirl. My night gown made a swirl around my waist like an old wooden hoop dress, layered in white tulle.

Feeling so light like whipping cream I tip toed up onto the scale, it flashed over and over 103. I did back flips all down the hall. The only things I was was missing was saddle shoes and two pom-poms. Free of fat, free of Lupus...

Life did a rewind on itself...I was me from seven years earlier....

De ja vu?...I just woke up from an early afternoon nap..the sun was baking me through the sheer blinds. Not de ja vu my mind compute...I had just wakened from a dream.

(As requested I lied, I woke up out of an IT stupor...I do daydream about that dream)

08-30-2007, 01:36 PM
I like your dream. I dream about my days of lying on the beach listening to the ocean and music in the background. Resting my eyes from the book I'm reading and seeing the red blaze of my closed eyelids. I love the warmth on my skin the total relaxation and the smell of my very thick red hair. Oh and I was actually wearing a bikini...boy those were beautiful days.

08-30-2007, 03:11 PM
And how are we feeling at this hour? Still a mess?

It gets old, then we take a deep breath and have at it again. Today I feel sorry for us. But you know, here comes tomorrow another day to explore and pray, wish, hope, bargain that IT will not exploit us another day.

It is so out of our control, it makes me upset that I could shake a stick at IT, as if it was an entity. So, we make do. That is what we do best. Make do.

You'll make do and find another avenue. Can you possible have a home office with them one or two days a week? Is your office on the honor system of leave or is it tallied each pay period? My Mum had worked for the US Attorneys Office and she took short lunches so she could leave early. She kept tracked of her comp time herself.

Isn't it a state position you are at? If it was me, I would take the time off as they give it. Thank them but don't speak out loud around co-workers, as it could easily pull the plug on this if they are making special allowances for you.

If is a state position, isn't it union? Are you on a 90 day probation? Can you apply for limited duty? I believe with Worker's Comp if a job affects a disease you're entitled to some adjustments. If you check into, check into it quietly.

Stop fearing, just do what you can..it is what is. You made them aware prior. The fear is more than likely aggravating your symptoms too, ya think? So stop already!

And how was that mango?

I get the two heads are better than one, while I am not paying attention neither is my husband... :shock:

And I do get having different shrink wrappers, collaborating and all.

Sometimes I wonder, why people say it is all in our heads in the first place? What would there to be gained? I can see some individuals seeking attention but as a whole, who in their right mind would like to feel like crap and then complain about it. So inane. And then we have to see the shrink...good heavens.

Take a rinse, enjoy the evening.
Mari O.

08-31-2007, 07:42 AM
Okay AB,

I am a bigger mess than I was yesterday how about you? It is to the point of being absolutely ridiculous. Even my bra straps hurt. I hate to let the girls just swing and do their thing. Being 46 I fight to keep them above my elbow height ya know.

Ah, should I whine about today? Hey, why not...being on the PC is probably the most I will do all day.

Instead of my bones being filled with marrow it feels more like sugar sand and water. I use to feel I was set in cement but today I feel like I was filled with cement.

My ribs, if all living flesh was removed would look like slow cooked Sticky Finger's Baby Back ribs. Dust white gray with chared ends. I am inflammed.

I feel like how todays' movies are especially the SCIFI flicks. Where the color of the film is tinted with browns and oranges and clips flash quickly from side to side, scene to scene, like a scene on Mars. Unclear, unsteady, uncertain, unknown, pulsating, hiding behind sunglasses, shades and sheers . Pain is there, not over here, now it is here but not over there.

I bring my mind to a place to where I make it seem unreal. I numb my thoughts and count backwards from 10 and stay fixed on the number one until I drift into that safe place in my mind. Eventually I find myself looking at me, all well in a dream.

Words of Martin Luther King Jr..."Even if I knew that tomorrow the world would go to pieces, I would still plant my apple tree." I have to believe there is hope, there is a future despite my diagnose.

I hope for all of us,

08-31-2007, 10:13 AM
I am so sorry that you are having such a tough time lupus sucks in every way possible

08-31-2007, 11:57 AM
I'm still feeling crappy today. I'm laying around trying not to lose my mind or focus too much on the negative. It isn't working. I feel disgusted. I wonder...Did I used to try harder? Ignore the pain more effectively? Want to get out more? I seem to wallow more now. To feel defeated.

I'm so angry this afternoon. I feel the impending crumble of my work life. I am on probation until March. (9 months) and I am not part of a union. They don't really exist in NC. I know there are some disability options out there, but my own HR department is very difficult to deal with. I don't even know if they are going to approve me for voluntary shared leave. A program that would allow my husband, mother and mother-in-law (all fellow state employees) to donate leave to me so that I don't get docked for missing more time than I have. Today I feel like, what's the point. I'm just going to end up losing my job or quiting. Why should I try so hard. I'm completely ineffective when I'm home, completely ineffective at work. i drag myself in for the paycheck. I'm not fulfilled. I'm not contributing. I sit there in pain praying to make it to five so that I can check another paid day on my calendar. If I had known it would be like this I would have stayed in my old job making more money.

We have people coming over tonight and I just want to hide. My house is a mess because I've done nothing in a week due to IT. I'm miserable today. I feel like my own worst enemy. I know things will improve, but when!? When...

Sorry for the thunderstorm...

08-31-2007, 01:23 PM
Hi Ashley,

Don't crumble yet....

Turn the lights on dim and shove everything into the closet. Do a quick dust on table tops, fluff the couch pillows and take the peppermint patties out of the bathroom sink.

When you open the door have a cocktail in hand to greet them with. And in a hour they won't notice.

Or keep the entertainment contained to one room or have a backyard evening fun...

I feel for you. Me, I wouldn't open the door. I would hide and turn off the lights or leave my husband holding the bag.

Or pop a Xanax and sing Que sera, sera...

Is it because you are on probation you may not be able to participate in donor leave, or because donated leave can not be specific to an individual and you have to apply to the "bank"?

If you can, hang in there so you can exercise your options at work, disability..is the new position taxing your energy, your brain?

You have an extra day, Mundane to get better than you are today..so worry not about tomorrow as the saying goes. It will only zap what today has stored...K?

Oh and hey, never apologize for not being well, being angry..I will always read with understanding...

Squeeze..hugs full of love.

08-31-2007, 01:37 PM
Hey IceGirl,

Thank you for feeling for us. It does suck..more than a strawberry getting stuck in my milkshake straw.

Hope Lupus and his cronies are being good to you today.

Be well,

09-05-2007, 04:14 PM
Hey Ashley,

Oh no, did you crumble?

Wondering how you are? Wanna grumble and moan, I am game...

One sentence - I am spent. We know the game, we have played it many many times. I wonder, why bother to play, is there ever a winner?

I pick up the pieces, played what I was dealt. Fair enough. But today, well actually this minute since IT is so unpredictable and filled with odds stacked against me. This hour I feel like I am free falling and forgot to pack my parachute.

I must be on a schedule, whose? IT's? I do alright, pedal through life for a mile then I slump into a feeling of despair. Could it be I feel like this is because I think it is an ulcer that is developng in my mouth. Goodness, a new item on the list. For gosh sakes, can't it gives us a break. One would sure like a breather, eh?

This rash I have on my stomach...it is bumpy like sand paper. No color, no hues. No reds, nor blues...just itches and it becomes bruised. Makes me feel so dirty. Tried cortisone, peroxide, bag balm, oatmeal rinse and it just seems to spread. Now it covers from my rib cage to my underwear. Laundry soap reaction? Humm, wouldn't it be everywhere? It is getting there, everywhere.

Compared to many I am doing actually quite well physically. Mentally I think we all run neck and neck.

Today I am tired of keeping afloat, treading water, with my life jacket on (mind). Today I feel like cutting the darn thing off.

Despite my husband's behavior and being out of state, this loneliness is gobbling me up too. If only I felt better, I'd go to the mall. If only I felt better, I'd go for a bike ride. If only I felt better, I'd call my family. I'd really have nothing to say about me, as it has become a small world after all, after Lupus.

I wish my books on IT and nutrition arrived today...UPS says tomorrow. It is hard for me to sit idle and wish, wonder and even have the self pity I am currently having. I need to figure this out so I can be free to be me and not to be dictated by a disease.

I guess feeling good is a fleeting moment.

Now with all that being said...am I a worthy opponent in the IT game I wonder? Must be, it keeps inviting me to play.

Life goes on, this feeling will pass and tomorow I will go back to Making Do. You too?

I hope I see you tomorrow.

Would you like to see some photos of me, this nutso girl on your screen...if so, I will send a link through to your PM...

Toodles noodle...hugs.
Get well,

09-07-2007, 04:42 PM
Dear Lord Almighty, hear my prayer.

Please take care of Ashley. She loves the world you have created. Through her words she expresses her love for all things you have created. Flowers, the warmth of the sun, the rain, the sound of waves and the red blaze of life when she closes her eyes. Graciously comfort her in her suffering and banish her from pain and weakness. Let her strength returned so she can enjoy this bountiful world you have given us. Let her feel your calming hand. I ask of you to deliver her from the pain she is going through. Through Jesus Christ our Lord. Amen. Thank you, God.

09-08-2007, 01:53 AM
That was absolutely beautiful Oluwa. I've been following the friendship that you and Ashley have found and I love it.
I noticed that she has not yet responded to you, so I am also including her in my prayers. Let's see her whole and healthy and in perfect peace with herself and the world around her.

Peace and Blessings

09-10-2007, 02:35 PM
Thank you Saysusie. I want to hope she is living it up in Puerto Rico...eating mangos.

I was reading one of the many books I just purchased, regarding coming off of prednisone. She was weaned off and I wonder if that trigger a flare that waned and then turned into an absolutely horrid flare.

I say prayers for all of us and ask God, with all my might to help mankind find cures to what ails us all. To me, it is all needless pain but a path we must walk. One step, two step we all make that ardous trek. Ugh...sigh.


09-11-2007, 06:07 AM
Hi AB,

I'll just write and you'll have a book to read upon your return or did you just ditch us? Hopefully it is the latter. Least we would know you are doing okay.

Okay? We have to find a better word. How about tolerable? Oh, I am just tolerable today. It could go either way. Letting another know that we are tolerable to be around today or we are tolerating IT. Two birds killed with one stone. I guess we will leave it up to the receiver to decide which is which, eh? Too much to think about on our end.

Tolerable it is! Well, today, Oh, I am bit more tolerable than the usual. Slept well. Must have been from late evening swim. I was swimming with the grasshoppers, beattles and moths...they were attracted to the blue pool lights. I tried to toss them out..I know they wanted to live. But they clung to my fingers, gave me the bug willies. I shook and flung my hand about, till they let go and back into the salt-chlorinated water they would swim until their demise. I tried.."stupid ole' bugs" I uttered as I doggy paddled about in my black girdle they call a swimsuit.

I have another SPOT of hyper pigment, oh, about the size of a tea plate on my chest. Maybe the rest of me is fading and that SPOT was once my color...perhaps.

I found some great reads on Lupus...thus far my favorite is The Lupus Book, Third Edition A Guide for Patients and Their Families by David J. Wallace, MD. Not one of his $200.00 plus reference books. This one oh, under $20.00 - $25.00 from Amazon.com. It has a glossary, herb charts, patient stories, his regime for his patients, symptoms, touches on other autoimmune diseases, how it affects each organ and more. I would say a must for our home libraries. I think Steve would like it too.

No rain has come our way in days. Clouds drift by, filled with rain, taking it to another part of our country's side. My potted plants cling to life...too dry..too wet. Too much work...on the porch, off the porch. I think I will go to Target and buy some plastic greenery and color. Twist and crumple the leaves to make them look real. Then stab their wiry stems into the dirt. Ugh, my green thumb has turned yellow brown. The climate, the plants are so different here. I just don't know how to nurse them. I am tiring to see the yard waste bin filled with root balls and a yellow straggly plant. attached instead of clipping and twigs. Wasting money but I am learning. Knowledge has more value if you learn from your mistakes. Buy fake.

I will be looking for you tomorrrow and the next, and the next day...

And I am going to have another talk with Jesus.
Marijo O.

09-11-2007, 08:01 AM
What a wonderful friend you are. Hang in there. I do hope your days go beyond tolerable and works their way into somewhat enjoyable!

Peace and Blessings

09-11-2007, 09:08 AM
Hi Saysusie,

As this day has progressed actually my thinking has become so much clearer, not muddle. Like the sun shine on a raining day. Breaks of sun. I feel like my spirit is resuming to normal. I have a skip in my step. Maybe by day's end I will have a gallop.

I was wondering, do you feel good as a whole everyday, besides the physical symptoms? I try to keep my spirit and outlook bright everyday despite feeling all coated inside. Feeling simply wonderful like I use to is far and few.

And when I do feel fabulous, I go at things hard and find myself back in a heap. I find it hard to just bake a cake. I want sear and saute' the entree', peel and blanche the appetizer and whipped the fresh cream to top that cake. I find it hard to slow dance. I want to salsa, do the cha-cha and the Aa...Ah..ah...Stayin' Alive...stayin' alive.

So , today I made homemade granola munch mix, now dehydrating various fresh fruits...nectarines, apples, orange slices and bananas. I have a Sirloin roast I just seared, slow cooking for tonights dinner.

I am already sizing up the walls in what the builder called a child's retreat. For me, I call it a landing. A landing big enough to park a few cars. What color...hummm. I have many old time photos of my Mum, Dad, Granny and Aunties that I want to hang them in there like a border at eye level.

So, maybe that is why I go back into a funk. When wound up, I hate to let my energy fizzle and waste. Torn between the two. Putz about or roar like a wave...hummm.

Ah, what is a girl do to? Right now, taking a break....

Thank you for the well wishes.

09-11-2007, 03:44 PM
I find it very hard, much of the time, to remain in good spirits. I am very lucky; I have wonderful friends who understand me and my disease, I have a very supportive, caring husband whose life mission, it seems , is to make sure that I am healthy and happy. Even so, I get depressed. This time of year is especially hard for me and, as always at this time, I fluctuate between morose and depressed. This goes on until January or February. You'd think that after six years, I'd not let myself go there anymore, but I do.

Like you..on those days when the pain is bearable and my energy level is up, I go at things like gangbusters. All of those things that I was unable to do because of pain, low energy, fatigue and depression; I attack with a vengeance. And, like you, I pay for it later by being completely depleated (both physically and emotionally). It is very hard for me to sit around, but I have learned that I have to do just that, sometimes. Now, I plan a rest day at least every three days. On my rest days, I do little to nothing (other than light exercise).
While I don't do very much that is considered artistic, culinary or decorative, I do go out and exercise (primarily in the pool) or take walks in the evening almost every single day. I am a singer, so I also expend a lot of energy in hours of rehearsals and the act of singing seems to do wonderful things for my soul :lol:

I work very hard at trying to be optimistic. It gets rather difficult when some new pain is always appearing, when something somewhere is always hurting, when I can't get enough sleep at night, and I always feel as though I'd been drug through the Forrest for 50 miles! So, I work at looking for the good in my life, acknowledging it and thanking God for the blessings that I DO have! That is a full time job in and of itself!

I admire you for always trying to do something and for not giving in to pain. But, remember, taking a day to rest your body is not a wasted day. It is a very important day in our health regimen and an essential part of our health plan and, sometimes, it is absolutely necessary. So, don't feel as if you are not being productive if you have a day where you do absolutely nothing. What you are really doing is giving your body the rest that it needs in order to be able to perform for you the next day. Having a rest day is being pro-active in maintaining your health!

I wish you the very best!
Peace and Blessings

09-11-2007, 10:25 PM
Hi Saysusie,

I wish I could sing. Well, I can but it isn't pleasant to the ears but my animals seem to enjoy it.

I can feel the power you must release with each note, each word and how wonderful inside it must make you feel. You can release the sadness; share the happy all in a song. You are an artist. An art form that we all remember. A song, to a time, a place, to a feeling. Time doesn’t erase those feelings, the imprints. We always remember "the good ole' days” always associating a song and a year...a person.

Takes a lot of energy to belt out a tune, to feel it and sing it. You singing Stand must have been absolutely beautiful that Sunday. Wow.

When I surrender to the pain, and I do sometimes I feel I lose a bit of myself each round. Closer to being sicker than well I think. Wrong I know. Times it takes me down like a lion running down a gazelle and then I adhere to the sofa like Velcro. Stuck and I feel myself grow.

A side effect from Plaquenil I wouldn't mind, would be losing my appetite...losing weight. I have all the other by products, but nope not that one. Nausea here and there...

I know gloom and have visited depression many times too. Hard ignoring an aching body and blocking out the thoughts that follows in our head. With each day we experience melancholy I believe it brings us closer to a place of accepting our illness. It is ours. It is our pain. To be content with what is. Count our blessings, indeed.

Thank you for this format to express ourselves in. All of us, inside and out. I find comfort in your words. Wisdom. Knowledge. Faith.

Happy Wednesday,

09-12-2007, 09:11 PM
There is nothing more stirring to me than to sing a song that moves me emotionally. "Stand" is one of those songs because it says everything that I feel. I love singing it because it can be sung both serenely (like a prayer of hope)and powerfully (like a call to action!)...depending upon my emotional state at the time. On that Sunday...it was a call to action! :lol:
I've heard it said that "Everyone can sing if the music is in their particular pitch" I believe that...(if Paula Abdul can sing..anybody can sing!). So, sing out loud to yourself, your pets or to GOD! Just sing as loud as you can as often as you can! Go Ahead...........
Peace and Blessings

09-13-2007, 09:36 AM
Or even Carol Burnette, as she tugs on her ear....


09-13-2007, 10:11 AM

Peeked in yesterday and you were nowhere to be found and I could be found on the couch. After insomnia until 3ish AM, I slept a stretch of 12 hours, fed and then another five yesterday. And believe when I woke for the second time I was ready for bed again. Brushed my teeth, popped online and that was all she wrote.

The clouds and heat raised cane in the skies yesterday while I slept. I was awakened to bolts of lightning flashing across the darken day, thunder echoing in the air and pitchers of rain turning the ground into mush. Becoming more the texture of lumpy mashed potatoes than top soil and when dry it's harder than stone. Hard to get things to grow in stone so I am learning you have to grow it on top and create a new bed of enriched dirt, manure and peat moss.

Today the decking crew for our pool arrive..I shooed them away and said by appointment only, not this day. I wasn't quite in the mood to supervise, to pick a color, so who knows when they will call to actually schedule. I am sure they left irritated. Yep, most crews just pop up when they feel like and many don't even bother to knock and head right to your backyard.

My husband is going to his wrapper today. He is a work in progress. I found a part within me that will wait to see his change come about. I too have to be open to his possibility to change as he is. So, I wait..not with a charred heart but with a heart that is filled with kindling wood and a spark.

Are you in the hospital or are you at home I wonder? Wherever you are, know this girl cares. In my prayers you are...Be well, Ashley, be well.

Marijo O.

09-14-2007, 07:44 PM
Hey AB,

Day 14..no AB...hummm.

In my prayers,
Marijo O.

09-17-2007, 12:47 AM
Hi AB,

Did someone scare you away? Me? I hope so than I would know IT has been good to you. For real now, I am sending you get well wishes. Get Well, Ashley! ...I just remembered, my PM from you back in June. What a dilly head I am.. I will give you a few more days and give you a jingle. I am in need to know you are alright...

I have insomnia. Lots of that lately. It is either too much shut eye or not enough. Crazy. As a whole feeling pretty good but I probably sound delirious now..lack of sleep.

I have a rheumatologist appointment on the 25th. I have many questions for him since reading my books. My knee is feeling better, still ripping but painless, so I may cancel my ortho appointment for the 19th...again.

Rain...alot of it lately. Soggy plants...yellowing leaves like the fall but from being water logged. My River Birch lost all of it's leaves. Two Evergreen Thujas took a nose dive too. And those are hard to kill. Poof...gone. I can't imagine too much water done them in. Perhaps they were disease when I got them. Though I have seen no bugs, mold or fungus.

Thinking of you today,
Marijo O.

09-17-2007, 01:59 PM
I'm sorry I have been gone, for more reasons than one. IT has been keeping me away, not in a hospital, but in an emotional coma, a pain cocoon. I've been out of work, out of my life, my head. I'm at work today which is a miracle unto itself. I will get to the happenings in a moment...

First I have to say THANK YOU. Thank you so very much for your kind words, your thoughts, your prayers. I have needed them and my current (even if it is temporary and ever so slight) reprieve can only be attributed to God's hand. The prayers offered by you and Saysusie were sent with the prayers of my friends, family and my constant beseeching cries.

Where to begin. I don't even know what day i went down for good. I was getting no sleep and the pain was progressively worse. Steve stayed home to care for me and in the evening some days I would be good. I would think I was coming out of it and we would rejoice only to find that at 2 am I was back in the excruciating pain that only IT can unleash.

We dragged ourselves to the doctor, my wrapper, his and the urologist. The Wrappers were good in their own way. I think they will be helpful eventually. It is even more draining, but at least they have comfortable couches. The urologist was less well encouraging. I have to have an exploratory procedure to ensure that I don't have any bladder abnormalities. I'm sure this is no big deal, but of course on top of being in pain, I had to have what amounts to a pelvic. So now I'm having a cystoscopy next week.

My husband, helpless and feeling worse about himself for it. My mother insistent and making my husband feel even worse. Me...worthless. So tired, so emotionally unavailable. Depression...at bay, but for how long?

My husband started a Bible Study last Monday, so together we are reading the assignments, praying, buying new bibles and having amazing biblical discussions. I see our strength coming from there. I know that is why I'm at work today, there is no other explanation. We are so desperate for some hope that we are clinging to our faith. As bad as it may sound, our biblical discussions are becoming our distraction. I don't mean to make light of them, but when we both feel helpless, we can distract the other form our pain by talking about a scripture. It helps that he has assignments due every week, but this is an amazing blessing.

I don't know how to keep my job. They are of course not threatening to fire me, but I don't really know how I can keep working. I lose more of myself everyday. The stress of missing work makes me of course miss more work. I get here in the morning and by 2 I have to take a vicodin. I need sleep. I'm desperate. I try to contribute, but my focus is so wavering, the fog so thick. I used to pride myself on my intelligence, my contribution, my ability to see things other could not. Very hard to change your self image. I wonder what I would do without the work. Would I have more energy? Would I ever leave my house?

I think I've survived so many things in my life that I just never had time to think about what was coming next. Even so I have only recently realized how HARD life is. It isn't depression, or even a sense of sadness. I've always been so caught up in the motion of whatever the even (grad school, college, working, fibromyalgia, abuse, etc.) that I've never had to think about the momentum. A body at rest stays at rest. Will I be in my living room forever? The weather today is so different than the last time I was even well enough to notice it. It is as if I missed a season. I know great strides have been made with IT. I know that I have a "normal" life expectancy, but I feel like I'm losing my life one week (or month) in bed at a time. This most recent wasn't even the worst, but it is maybe the first time since my diagnosis (January) that I'm realizing that this may be "normal" This may be what life is like everyday.

The previous Fibromyalgia seems a cruise compared to this. Intermittent absences. One week in the fall, one in the spring. Low level pain everyday. Some days worse some better. Even on a "worse" day, I could push myself to do house work with breaks (keep in mind worse not worst). Now, I don't even know how long it has been since I could vacuum. My mother does it. It makes me feel so weak.

So there is my little bit of joy. I'll stop now. I have to go home for the evening. I'm here and hurting, but every breath is a gift and I do appreciate most of them :)

Hope you're in better shape. As always, my prayers include you.


09-17-2007, 02:15 PM
Hi AB,

I left you a garbled message. Since we never formally met, well, awkward I felt and sounded. Hey, this me...the Lupie...not a stalker if you wondered who that person was. It was me. Do I sound like Fran Drescler? I've heard that often or Margie from the flick Fargo because of midwest northern accent. Originally from there till my teen years.

This morning went for a swim..even toiled a bit in the dirt this afternoon. Wooohoooo...even potted the fall Mums and changed out some soil. Maybe these plants will last. What use to be a daily task..now seems to be a grand event. A momentous occasion. It is all good.

Oh, in my Lupus it books they also have chapters on disability and pregnancy...

I did cancel my ortho appointment....and fell back to sleep about 5AM

This is my day in the south Carolina...hope all is well or on its way to be in the northern one.

Hugs..Be well...in my thoughts and prayers,
Marijo O.

09-17-2007, 03:29 PM
Wondering how our posts crossed paths. When I last looked I had seen none.

There you are Ashley..I know what you are feeling. Okay..close. Living in a state of denial before. Feeling there is hope, wellness...like a cold there will be a healthy end and outcome. Then we rethink, after we read, after we hear, after we get a bang upside the head...Hey wake up...we step into the unknown, our reality, the words "normal" seems so horrid and depression sets in. Because the meaning of the word is so different from another who is "normal." And another’s' normal is our abnormal and theirs is ours...crazy. I get depression, I get it girl. Is this as good as it gets?

I think depression is sometimes worse than the physical pain. I don't dose with anti-depressions, I've tried a week here and there of them only to stop. I try to work through it. Not to be a hero or condemn those who do. Just all these pills worry me and I feel like going cold turkey on Plaquenil now. I never took pills till my disks herniated...since then most days I have been on something or other.

I know depression. I don't want to speak to another...or write gloom and doom. There has to more to say, but I can never find the words to say it. Perhaps it feels like a lie, to say I am okay. I’ve gone two weeks stretches without talking to anyone. Tucked in bed, blinds and curtains drawn. The tube whispering as my mind drifts into me. My life. I cry. I get mad...I sleep. Cry some more. Mope about. Get a drink. A handful of junk to munch. It is all about me. Totally believe no one understands. Fat, disease, bulimic, rape, molestation. Tire from explaining...maddening. I get you, your feelings, AB. I get it. All that ugly made me, me. Stronger, to feel empathy, to feel. To really feel life. All it’s happy and unfortunately all its pain. Probably more magnified than the “normal” person.

When we mourn the loss, so we think, parts of ourselves…. actually it is gain. It can be a painful gain, but nevertheless a gain. I lost the girl in me at 4, but gained the strength of a woman just before my teens. I gained, grace and dignity.

All things from our past, and add this to the mound...surely it topples and we feel such despair. In our worst hours we usually reach for God's hand...find our faith. And you know what...it is all good. Because God has never left us, he never will even when we have left him. His words will give you strength.

I try to realize my illness affects those around me too. Their lives have changed too because they were use to my before “normal”.

I will leave my email address in a private message and telly number. I can send you invite to see my online albums. Of me, my animals, spouse and flowers. Flowers that will color your day. Or I can email the flowers as a download and you can print and frame them. Name a color and I am sure I have it.

I hope my call or posts haven’t made you feel added pressure to write. If so, let me know. It is all good. If, I don’t hear from you…I get it…really. And if you want to write about the abuse...to share I will listen too. And if you want to talk about strangling IT ..it’s all good too.

Sometimes it is easier to talk/write to someone you have never met...behind a screen lets us take the mask off. The mask, the many facets of our personality... that covers our pain from our illness and our past. Wroting can take away the awkwardness of grasping for the words we want to use to convey our feelings, unlike sometimes in person.

You will find your way Ashley. Oh, hey...Good News Bible is a great explanation of the King James Version Bible. Verse by verse.

What day is your cystoscopy?

It is dinner time... I hear the bells ringing. I have Indian bells dangling on my doors knobs so my husband must be closing up his office and letting the dog out. Hummm..fend for ourselves or should I cook, toss and bake...

Keep finding wellness, our wellness....remission.
Marijo O.

09-17-2007, 05:16 PM

You are such an amazing friend. It is truly a God-send that we found each other (for me anyway) I too have the rape and molestation in my past, how could this be? I talk of it to no one. Very few know. My husband, my best friend (in Greece now)...

I just seemed so much more resilient then. You know?

I am in better spirits since I wrote everything earlier. I feel stronger though I'm so tired, I will take a vicadin and stretch out. Steve will be home at 9:30. I will doze until he returns. His adventures in this bible study are so interesting to me. Faith, spirituality are so intertwined in my very being...the one piece of my identity that has grown stronger through all...my anger at God at the loss of my brother, the begging, pleading for strength to hang on through my most desperate hours...

I've always been open to meditation and so in touch with my body. I've always been a "granola" (my mother calls me) I wear very little (if any :D ) make-up and even then I try only natural things, untested on creatures. I love all natural, organic. Free-range chickens make me smile...happy cows, happy chickens, etc...No additives. Taking a vicodin has become as natural as pulling my hair back...how is that possible?

Anyway. I meant to address your call more clearly earlier. I heard no awkwardness, just the voice of a friend. I smiled when you identified yourself. It more than anything else snapped me back. It was so phenomenal to hear your voice and know that you were concerned enough to call. No expectations, just concern in your voice. I was so touched. You do sound different than I expected, but I knew (or thought?) you were from the pacific north west, so I hear a different (than southern) accent in my mind...I was not expecting anything resembling canadian. My best friend (who is in Greece) is Greek, but she was raised in Canada and the US. Her Step-father who visited us and became a great friend after the death of her mother from cancer while we were in college sounds like you do. It was such a pleasing accent. He is from Regina, but lives in Vancouver now. Anyway, your voice through me in mind of truly simple times that seemed so difficult which brought everything into perspective. Who knows if the hard times of now will seem hard in retrospect, so perhaps I should treat them lighter not give them more weight. God would never give more than we can bear.

I am happy to communicate anyway you'd like. I too will send you pictures of my trip to Ireland. They will have my husband and maybe my cat :) Though she does not care for having her picture taken in anything that is not pre-posed. Steve says she is aptly named (Chloe) because she is like a supermodel. Sleek and beautiful and highly neurotic.

Thank you, my friend for grabbing my hand before I slipped into the abyss...

Enjoy your evening.


09-17-2007, 05:18 PM
Saysusie -

Thank you so much for checking in as well. I can't tell how relieved I was to see someone checking on Oluwa while I was unable to post. Thank you to for touching so many lives. The support I feel and am able to give in this forum are at times life saving.

God be with you...


09-17-2007, 06:50 PM
Ashely, I am so happy to see you back while at the same time, my heart goes out to you for all that you have been (and are still) going through. I does my heart good to see how you and Oluwa have connected and have helped each other so much.
Please know that we care about you both and that we are here for you!

Always...your family!

09-17-2007, 09:38 PM
Hey AB...

Emerson, the poet wrote...I didn't find my friends; the good God gave them to me. Thank you, God, I say, for Ashley.

Granola...in a way me too, with the exception of leather. My thoughts, feed and cloth a nation. It is natural and not man made. Though I don't use raspberries to stain my lips...I have always liked make-up, my face being a blank canvas. I can make my malar rash disappear with a few brush strokes and a few powder puffs. Art. Illusion.

I love my high heels...but with IT..month by month the heels have come down. But due to my back surgeries..I need a bit of a heel. It supports by thighs, which supports my butt and stomach by keeping them tightened, which supports my lower back. Keeps me tight and straight I guess. Most people think it is strange..Heels? Bad Back? Heels while I wash dishes, doing the laundry, in my PJ's? My doc in Seattle thought nothing of it. Many out there use heels for support too, nothing unsual he said.

Amazing...we have so many things in common, even the life happens things. Molestation, rape and even in Lupus...

Molestation took place from the age of 4 to 10. By a neighborhood boy, 8 years older. I remember scenes, like light bulb flashes from a camera. I remember disconnecting myself from reality. Locking myself up in my mind. I look at the little blonded hair girl in the green tulle dress and wished someone protected her, I wish I could've...wondering how her life would have been if someone like me had step in.

Raped when I was 18...too horrid to write in a forum for others to read. I would have to write "Viewer discretion advised" as I would try to create a visual with my words.

Resilience...been young I think it is more of a denial , a coping mechanism and not actually bouncing back we do. Oh, it is what is we think. Shelving something that should have been dealt with at the time. I think it festers and shows it face when we realize, who we are. Becoming a "woman", into our own. Figuring out how we came to be by lifes woes and joys. Confronting our fears. Facing our insecurities. In doing that all those life events that should not have happen roll out as we search for the answer of how we came to be. Maybe blaming ourselves for the events. Angry at who inflicted the pain, the change.

Me, I've tried to turned that pain, that shame into a positive. From it, I am thankful for the empathy, compassion I feel for others. I am like a sponge literally..I feel ones' emotions at the first encounter. I feel fear, I sense bad, I feel love, I feel the earth. Sometimes I deny my feelings, doubt my spirit that I was born with. My instinct. I lose my way and trust the wrong person at times. I knew better, but I created the doubt. I doubted my heart, my gut, my spirit with my mind. My mind changed my natural instinct. Our thoughts can mislead us I have found out. The heart knows, it has it's own entity I believe.

I know the events that have happened created a wall, a barrier in my persona. How or what? I haven't actually been able to pinpoint it with words. A defense of some sort. Guarded perhaps in some areas. When you don't know anything different it seems normal, but inside I know I am guarding and protecting...what is what I don't know. Humm...I just thought. Maybe the little girl in the green tulle dress, inside me...maybe she never grew up.

I love your expression taking a Vicodin is as natural as pulling back your hair. So, true...how we've become. As of late..I question each one.

I would love to see snaps of Chloe. My cat, Pookie Monster...runs from the camera and usually I end up with a butt pose. Her butt is so cute...skinny hips then a big balloon for a belly. I laugh with love when I see here waddle away. Not sleek nor nuerotic. She is a slow moving and curvaceous in all the wrong places. The only time I see her sprint is when I say.."Who wants something good to eat."

I hope you are sleeping well as I write this..it's over half pass midnight I should make an attempt to get some REM myself.

Good night...I hope tomorrow there is more calmness found for you, within you. Explore...the answers lie within. It maybe an ardous climb out, but you will find the strength through your faith and with your love for yourself to make that climb. Sometimes we just have to change our thoughts with the event, the page from our past to move forward if we want to refer back with out pain, shame or anger.

Night, night.

09-19-2007, 07:36 AM
My abuse was a one time thing that shattered my life into a million pieces (by a family member, which force a sides issue in my family if you can believe it. Those who believe, those who do not.) I was twelve, but very naive, innocent. The rape was in college...I feel the same as you about describing it.

I have always said that I like who I've become because of these things. I think that is still true to a certain extent, but I wonder who the less damaged version of myself would be. I love that like you I am an empath, but it can be hard to be this way as well. I take on other peoples emotions rather than knowing my limit. This means that my gas gets sucked up especially fast (or I lose all of my spoons in one encounter, whichever metaphor you prefer.)

Yesterday was awful and then okay. I had a bit of a confrontation with my boss regarding my absences, cried and then blew off steam. I had my wrapper appointment yesterday and she sided with me (is she supposed to do that or to be more objective?) She essentially said she thought some of the statements made were illegal. I don't disagree. It made me stronger, more determined to keep this job. I would love to not be sick and never miss a day, but I have an illness and I'm entitled by law to miss 12 weeks of sick Family Medical Leave without any action being taken against me. If that is inconvenient it is just tough. No one wants to be not sick more than I do so those who have an attitude can go to hell.

I feel strong today (spiritually/emotionally). I am in pain as we speak. Typing away at my desk, but I'm upbeat, feeling invigorated at this three day stint of making it in. This weeks moto (maybe I've mentioned this already) "Just get there." I don't have to be here at exactly on time, I don't have to stay all day. If I'm only here an hour, I'm here and that is HUGE. It is really kicking up some momentum, which I am LOVING.

I hope you are feeling this today too. Positive. But if not, I have gas to spare, so fill 'er up...


09-19-2007, 08:24 AM
Hey you,

I am running on a half of tank, not pulling off the road just yet.

I happy you said something...steam away. It helps rid the guilt we feel when we can't do something we want to, work and wonder do others, supervisors and co-workers think we are just taking advantage of them, of the system.

I know you have good work ethics and you know that too. Stand your ground....

Here's a link for FMLA for state employees

Title VII of the Civil Rights Act of 1964 ...Title VII, the Americans with Disabilities Act of 1990

and nother ...scroll to N.C. Brief desription with Statue reference..

I do think a shrink wrapper is being objective when they agree. The wrapper my husband and I had attended that one dreadful day, he went back to see. I asked him if she mentioned anything about my burst of relief from my heart that had been caged by my mind. She told him I was in alot of pain and pain from Lupus too. He started to say..she said for him to exceed all the kindness and love that she (me) deserves. I told him he didn't need to tell all. That was his hour, her suggestions, mental care was for him and he didn't have to share that part of his hour. I feel it is a private relationship between him and his counselor and if wanted to I would listen, but he didn't have to. He left it at that.

I would see his work together with his shrink by his change. I have been noticing some. The door is ajar but I haven't took the chain off yet. Just enough room to wedge a head through. I am not waiting for the other shoe to drop. I am waiting to see them both on, laced and tied. Ready to move onward as a marriage and not an employer and employee. I got married not hired.

How's is everyones' emotions at home? Steve? Mum?

Where's the pain at? All over? From the possible UTI? What day is your cystoscopy?

I am sorry you were abused. It hurts. It hurts to wonder what we could've been too. Hugs.

Being empathetic, do you wonder like I do..I wonder what happened to the abuser before he did those things to me. Was he abused too?

Pain, pain go away...Ashley wants to go to work and play....
Marijo O.

09-19-2007, 10:19 AM
Marijo -

Thanks for the websites they are useful links to all of the info I need!

I received my approval for Voluntary Shared Leave today, which has given me a great deal of relief. My mother has already begun the process of volunteering the time that will keep me from having leave without pay.

I do empathize with the abuser. I wonder too, why? I know his family and I don't know what happened. There was definitely mental abuse, but physical or sexual? I don't know. Are any people born evil? or are they made?

I hurt all over. I think I'm suffering from pleurisy as well as just the I was in a massive fight feeling. I'm okay though. I've been really up beat today and I only have half a day left so lots of good stuff.

The cystoscopy is Tuesday. I'm glad it is so soon. I've had two more "episodes" in the last two days. I really don't like them. (obvious) Seriously, they make me feel very out of control of my body and a little panicky. It isn't a good place.

Emotionally, we are coming together. My mum has been a great support most days. She still has needs for me to meet, but she has been a lot less demanding. The trick is to allow her to feel needed, which isn't always easy for me.

Steve is okay. He vacillates between pretty good and the pits. We are working on it. He is definitely more open about it and I think our bible study is helping as much as his wrapper. We went together to his wrapper last week (I'm not sure I mentioned) and that was really good. It was still completely him focused, but it was a safe environment for me to take responsibility for my short comings in our relationship as well. It was absolutely not a blame session by any stretch but a collaborative way of teaching his wrapper about our relationship. I think it went well.

Okay, back to the grind.

I'm still at 3/4 tank and it is after one!!



09-19-2007, 12:47 PM
Hey AB,
I am glad you have the woohooo's today and you are able to participate in the donor leave program. I can hear your big sigh of relief and see your shoulders drop and relax. I am smiling with you...that is good, that is really great Ashley.

My chest hurts too. I have that on my question and look at this list for my doctor. I am uncertain what pleurisy feels like...or if it just my GERD. A few years ago I had inflammation of the cartilage at my rib joints..Costochondritis. It kind of feels like that but all over and underneath. Is that what pleurisy feels like?

I think people can be either, born or grown into evil. Born, brain chemical dysfunction?

In my marriage I know I have shortcomings too, but for now I feel content to point my finger, in thoughts only. This month I feel I am entitled, but I don't demand a penance from him.

Oh, the pool cleaner guy arrived already...type at you later...


09-19-2007, 02:37 PM
I'm getting ready to leave for the day. Steve and I have a strict 9 pm bedtime tonight (in an effort to fight the 3am falling asleep trend for this week. We are not good at going to bed early so we have actually set an alarm to alert us to actually do it (isn't that both hysterical and sad).

I do a lot of thought pointing too, but ultimately I have an extraordinary husband whom I don't know how to support so I spend time on that in his wrapper and mine and when it is just the two of us. Mostly neither of us blames me. I've stopped beating myself up over it. I am really great at being supported and not so great at support. I get very impatient. I don't want to be that way. I've always been a great listener. ALWAYS. I do that so well for my family and friends that it makes me proud. Unfortunately anything beyond listening seems to be a struggle. When he is sick and whiney I just want to yell (and do in my mind), "IT IS A COLD!!!! GET OVER IT!!"

It is difficult to do supportive things when you feel like poo yourself, but I want to be nurturing to our future (hopefully) children, so I need to learn how to nurture him. Does that make sense? So much of our wrapper sessions are focused on not screwing up our kids.

Okay so someone stopped by my office and I'm here an extra 45 minutes!!!! I have to get out of here...

Have a wonderful, restful night.


09-19-2007, 03:43 PM
Hi Ashley,

It is funny and sad...My 90 year old Auntie stays up later, 11PM. They say the older, older you get the less sleep required. I don't know about that, my Auntie can clock in 9-10 hours.

My husband is really tender. Whines, owwie when he gets a wood sliver or paper cut... I use to coddle and nuture now I say get it yourself with a smile and get it anyway. The smile is my camouflage.

I understand the feeling to learn to be supportive. It is important to feel validated and not just heard. We all long for it even if we don't feel we give it.

When I feel poo and see he sporting a frown. I just sit on his lap and hug him or sit right next to him hold his hand and not say a word despite my still misgivings.

It is great that you still feel good after a hard well earned day of work. Bit, by bit when your worries leave ..bit by bit you will feel better. Stress, what a whole body, well being deflator, eh?

You're welcome on the links...

Hope you are enjoying your evening...we will probably be glued to the TV. New fall season begins. My husband loves TV and yells..Mari, its on, its on. Being ill, I am learning to like it too. I have my favs.


09-20-2007, 05:27 AM
It is really funny that you are learning to like tv, I'm trying to learn not to. We watch WAY to much tv and we are making an effort to cut back a bit. We have our favs too, but we also have tivo, which can be bad. We spend our weekends watching those things that we didn't have time to watch during the week, so we spend all of our weekend indoors. Now when I'm sick and at home, I do like that we have so much variety if I'm just in too much pain to focus on a book.

Last night we went to bed at 9. Of course we laid in bed reading until around 11, but I was still more sleepy than usual. I went to sleep straight away and then woke up after a nightmarish dream at 11:45, then again from another at around 1, then again and again. So I'm just as freaking tired today as I was with going to sleep after 2. AHHHH.

Steve has his wrapper appointment today. We'll see how that goes.

We also have weight watchers tonight. I'm not looking forward to it. I have been yo-yo-ing up and down around the same weight for roughly two months. I'm sure it is due to my inactivity and quiting smoking, but I have been STICKING to the diet. I'm disgusted.

Talk to you later...

09-20-2007, 12:43 PM
I'm missing you today. Hope you are active and having a fantastic, high energy, run around day and not the other kind. Thursdays is weigh in and dinner with my husband and mother out so I won't be around to check later. I wanted you to know you are on my mind and in my prayers.


09-21-2007, 06:13 AM
It is Friday morning and still no word. You were so patient with me when I was not responding, but I'm so worried about you. I am praying hard for your absence to be a good not a bad thing. Do you know the Jabez prayer? I pray it a lot. It is one of my favorites. In my mind it is still the king james version, but I know there are NIV versions as well. Here is the prayer I pray (for other's I replace the me's with that person's name, but the original prayer is a me thing, so here it is...)

Oh that thou wouldest bless me indeed
and enlarge my coast
and that thine hand might be with me
and that thou wouldest keep me from evil
that it may not grieve me.

I found a more modern version that is easier to understand I think, but again I pray it in the KJV because that is how I learned it:

Oh, that you would bless me and enlarge my territory! Let your hand be with me, and keep me from harm so that I will be free from pain.


Oh, that you would bless Oluwa/Marijo and enlarge her territory! Let your hand be with her, and keep her from harm so that she will be free from pain.

Hope to hear from you today...


09-21-2007, 09:20 AM
Hi Ashley,

I fell into the HOLE. I guess there must be room for one. Last week plus you took up homesteading in the hole, you came out..and oops I fell in.

It is hard talking about the dark place I go to in my mind. The thoughts are drowning my spirit, that I give my spirit no time to come up for air. Thoughts to speak of, creates fear within me because I know we read everyones words. I know we all feel them. I just can't write of them because they scare me, thinking I have no way out.

Maybe it is taboo to speak of them. Fearing I will sound an alarm. Fearing my words my make another fall into the HOLE.

Writing and reading is my rope of hope but today like yesterday I went for the the Xanax. Numb, hopefully in the next light I will feel a ray of hope. I know it is there, I just don't feel it. The mind is messing with my spirit.

So, for today I am a blank slateboard because of the Xanax. The stupor pill. I thought I could strum up some words to make me feel better, words to make another feel well, give and we all receive...but maybe later, perhaps tomorrow.

I came mainly because I knew you would be here, wondering, worrying, posting to me. Thank you for caring. Thank you for the prayers.

Don't worry about the scale, it is just a number. It can not measure the wonderful person you are.

I'll be back..with a Hi or maybe page full..
Finding my wellness,
Marijo O.

09-21-2007, 01:34 PM
Oluwa -

Stupid hole. I hate the hole. I know the thoughts of which you speak and they are taboo. A taboo that keeps us from reaching out, I think. The thoughts are such a strange entity. Are they another form of release, thinking of the alternative? I have a brother and a friend who have gone before, but neither alternative is sexy. I used to think these thoughts a lot.

My therapist asked me the first meeting if I had suicidal thoughts. I told her that in college I had seriously thought about it. When I was that far down, I knew what it meant to be left behind, so I made a pact with myself to record messages for each person I thought would be affected. My mother, my best friend, my roommates, etc., etc. etc. The process of making those tapes was so cathartic that the act itself was my saving grace. Thinking about those whom I love and know love me. Thinking of the times we shared and all of the sharing we had left to do, even in my desperate I-can't-imagine-anyone-wanting-to-be-around-me-and-they'd-be-better-off-without-me-state I was able to really see a light. Funny how that worked so well.

Anyway, talk to me I will not judge. You can always PM me your more private/dark/desperate thoughts. I've thought them all before. I will not judge. It seems to me they do more damage when snowballing inside...

If you just can't or don't want to, know this...I already know. I don't want anything to happen to you, but who could blame you for thinking these things. My life would suffer without you and other's lives would too. There would be a place that you fill that would be empty. I know having lost so many that the world would not stop spinning, that time would go on. A little piece of me would not. This must be strange coming from me. How would I even know? You would not write to tell me. Your husband would not either. I would call and call and call and when no answer came, I'd know. I'd know in my heart, my soul and I would weep. I know this because no one understands more than I why my brother chose to leave us, but even now as I right these words I know everything that I missed out on because of that decision. I do not blame him, but it brings an unquenchable sadness that I will always carry with me.

Take care of yourself or better yet, force your husband or mother or me to take care of you. Let us share your burden.

May you have peace in your mind, body and spirit.

I will check in later...


09-22-2007, 06:51 AM
Hi Ashley,

Thank you for being there, here. I just have to reframe my thoughts and acknowledge the fact that I have a chronic, incurable illness and this is the life I have.

I don't get a do again. I have to find where I fit amongst IT. I don't have to be the center of it. I can live around it. I know, I know, I know that is what I need to do. I just don't know how to nurture that life.

I wrote in another thread that pain causes one to go into a nose dive. Wednesday I was skipping along, whistling with the birds, pain endurable without medicine… tested the pool chlorine levels, ph and etc. Brushed just the tiles….all is good. Then BAM! Bigger than Emeril’s. I was in such excruciating pain. Every place a hoodie would wear ached. The head, the neck, arms and trunk. It felt like my whole upper trunk was in a vise grip and it was being tightened and then tighter than before. Ruthless, merciless pain.

I am thinking, cripes I did a bit of housework on Tuesday, felt it…stop…then a bit of pool the following a day and by the next light I feel assaulted. Then I began the assault on my mental well being which wounded my spirit. I was in the hole and all I could hear in the darkness, the echoes of, “This can’t be my life.” Other thoughts followed. Dosed with Xanax, slept many hours to shut the thoughts down. As the hours had past I became uncertain of the time of day and what day it was. Despite it being day, I saw darkness.

I always come out of these "stupid" holes. Usually in three days, but when I am in I feel blind, in a clumsy stride, hands reaching into the darkness and finding nothing there. Terrifying to me I start to lose hope. No longer do I start my prayers with Dear God, instead I shout Help me, God, please and ask for nothing else. My prayers become selfish.

Today, I see the light. It was a living dream, a ghastly dream I was in. No other way to describe it as it leaves my thoughts and only reminisces of it will be with me by the day’s end.

Support, in this city, on this block, in my home...I just really have me. My Mum died when I was 34. Terminal cancer made her let go. My husband gets it in his own way..trying to be a waiter. Who wants that... I silently think. But loudly through tears I asked show me love during those days. I rather feel like a little girl, a princess who is loved, whose head gets hugged then treated like customer who places an order. “And make it a deluxe with a small fry.” “Will that be all, ma’am?”

Sometimes I just want a hug and to say it is okay but all I hear is want can I do, (helplessly)…you know I love you. I say hug my head and I feel as though it is the hardest thing he has to do. Maybe he isn't capable of showing, maybe before it was all a show, a show to impress, who knows. I mumble through the tears, maybe you can ask your counselor to teach you how to show the love you have for me because really I don’t know.

In my family, amongst friends and encounters I am always thought of being confident, the caregiver. Standing tall inside but definitely short on the outside. So, to go to my family I would never do. It is hard to be weak in a family that is so critical too. I always admire, and rescue when I see their weakness. In my family a joking finger gets pointed and they laugh thinking you are kidding....ah, come on, you? Not you...

If my Mum was here, surely I would jump the next plane out. If my Dad wasn't ill, diabetes and all its ugliness, blurry eyes from bleeding inside, kidneys functioning at less than 20% and if he was alone I would fly to see him. But his house is always full of guest, grandchildren, and neighbors I will wait till he heads this winter to Florida. He is a snowbird.

No doubt I will fall into the miserable hole again until I figure out how to go around. I don’t like that bleepin’ hole. I have to stop living for an intermission or accept perhaps this is my intermission, blah and achy. Wow. I have to do a big reality check. Reevaluate, reevaluate. More to learn about me, with a disease.

I have the tools; I just have to figure out how to use them properly as it appears I have not been. A work in progress. Maybe it isn’t wellness that I need to be seeking but to find a place within me to live with my disease.

In the shower I go, planning to get new glasses...hoping today I am learning to live with IT instead of thinking hey I am well. I am not. I have to accept that and live by the rules of IT. Rules...rest, exercise with MY limits, stress free, eat well and feel I don't have to explain and excuse myself anymore.

I have the Rules of Engagements, instead of words on a screen I will make it my lifestyle and I will be forgiving to myself.

I told you I would be back..with a full page.


09-23-2007, 05:45 PM
Oluwa -

As always I am so happy to read your words no matter what they are. I'm sorry you are feeling this way and I send you so many hugs. I know there is nothing I can do, but I also feel what you are saying. How do you learn to live with this? How does it become something you can pseudo predict? How do you integrate it into your life?

I know there must be a way. I don't know what it is. I keep thinking it has been such a short time since my diagnosis that with time this life will seem normal. With Fibromyalgia it was eventually so, but it took a long time and the symptoms seem far less severe now that I have the lupus symptoms too.

One night last week Steve and I were up so very late trying to make me comfortable. I eventually took another half a vicodin and we tried to sleep. He rubbed theragesic on my knees though they were flaming and I winced everytime he touched them. It is the first time I've felt how much my pain is his pain. How much my struggle is his struggle. We were both writhing in our own version of my pain together and when it subsided some, it subsided for us both. So very very strange.

How does anyone ever get used to this being their life? My father's best friend died a few years ago (I think I've mentioned her before) She was in her late forties/early fifties I think and she had been diagnosed with IT when she was in her very early thirties. IT ended her marriage and her career. She raised a daughter on her own and likely became addicted to pain killers. She was fully functional until the end when they declared she had accidentally overdosed. I assumed that it was not an accident, but now I honestly don't know. There are days when I have to call Steve to find out when i last took a pill. I try to remember to write it down everytime, but when the pain doesn't subside, I think, "Did I ever take that pill I had in my hand?" I know one extra pill would not likely do it, but it was not an entire bottle she downed, it genuinely could have been an accident.

On the other hand, I can imagine after dealing with this for almost twenty years that I would feel even more desperate than I do during the bad days now. I know I have so much to live for (on a good day.), but what is life like when you finally get all of this integrated? Do you ever get over creating new adjusted dreams? I already miss my old dreams. No regrets, but my life is so far from the dream I had when I was young. So many sacrifices, because of my health.

IT sucks. (So eloquently put I know)

Who knows what lies ahead...

Hope your Sunday has been restful. Sending love and understanding...


09-24-2007, 10:00 AM
I am poo today. How are you?

09-24-2007, 10:49 AM
I am pooish...

09-24-2007, 11:24 AM
Sounds like you fell into the hole as I was coming out. The musical hole, eh? I am teetering...between blah and finding some oomph.

My husband departed for Cleveland today and will be back Thursday. I am trying to get excited about our upcoming anniversary. Lost for a gift idea.

Being traditional wood is the material, I thought to purchase a small handcrafted, decorative type box and create instructions on how to make a wish and call it a Wish Box. Cheesy?

And I've been surf shopping to find a new receiver for his entertainment media system...wow, I have no clue. Lost in the HDTV, HDMI, Dolby, 7 channel, pass through, input, output...I am pooped out mentally. If I smoked I'd puff on a menthol.

I was concern about you quitting and changing so many things at once. New job and etc. How is it going? Recommendation from me...stop smoking...and moderately watch you food choices. And work 4 hours a day. 9am - 2pm, with a hour lunch. Are you weight lifting too....good heavens, no wonder you are going into the hole. Too much girl. I'm trying to think of a strength work out regime as the swimming season comes to a close. My pilates with some weight cuffs..humm? Today, I will pass on thinking about it.

I'm trying not to think about IT, not in denial..just living within my limitations. I figure this way I may get healthier from not stressing about it. Plan my day a bit better, routine and let my body be my guide.

Sometimes I think when I am alone I am more stronger and inclined to do for myself then when my spouse is around. I feel better when I am not whining about it to him, and explaining how I feel and I draw on my own strength and push myself to find a better place mentally. Sometimes when I wonder if I talk about being ill...I end up feeling worse. I think sometimes our illness gets bigger than what we feel when someone is home...does that make sense. Not that one would fake it...just seems easier to say..oh, could you, would you. My mind is so flat right now I can't think of the single word that describes it...hummm. Help me, what is the word...sheesh. I am having a disconnection feeling....

Maybe I need some nourishment for the brain...lunchtime...I'll pop in later, K?

See ya...

09-24-2007, 12:57 PM
Oh, the fresh pineapple was marvelous. I also made a tomato, fresh mozarella and fresh basil salad. Drizzled with Olive oil and fresh cracked black pepper. Always a fav. I grow a few herbs on my porch. I also like marinated red onions, diced tomatoes, peppercinis, black olive in red wine vinegar, olive oil with a dash of garlic and fresh black pepper.

Are you at work today?

I believe we all change our dreams regardless of our health. Many dreams depend on opportunities, making or available. Before I knew I was ill or felt ill my dreams had changed. Many times over from adolescent to today.

I compromised along the way. Made choices because the options were limited. And began new dreams. I believe they always evolve...some tossed out, new ones added regardless of our health.

Having Lupus creates a choice based on one thing our health it seems, but many choices with health or not are based on other things too. Such as money, location, education, drive and etc.

The dreams you are talking about, is it career related or family? Children? You can have that too, children.

I don't want you to be sad, about who and where you wanted to be. Sounds bleak. We all look back at any age and say gee I could've, why didn't I and etc..especially in our 40's and when we are ill. We love the people who became apart of our lives, spouses, family and etc. Never regretting them, but we always wonder and we are human..what would it had been like..hummm.

We will always wonder what wasn't. I believe that is human nature.

You can still live the dream in a way, just modify it a bit. Downsize it. If it is work related, find another part of the field that can accomodate your desires, wants and needs. We don't even have to think small...just outside the box. Our limitations is set by our thoughts too.

I know I have a desire for more, but I have a hard time finding out what it is I need. Maybe it is just a sense of feeling I have a purpose and it is not being fulfilled. I know God gives us life and that life is just a sojourn here but that doesn't stop me or you from seeking a earthly fulfilment. I know what you feel...why we feel the need to fill ourselves up..Dunno. But we do, with dreams, goals and etc.

Humans, we are always seeking pleasure and happiness in a ever changing world, not the one we live in, but our world inside each and everyone of us. Ashley, you will find you way...we, grow, we learn from each step along the way.

I know life on earth is finite and I have to enjoy it along the way instead of seeking to fill myself up with what I can not I try to tell myself.

And hey, they may just find that miracle drug sometime soon..or you and I could be that miracle patient. Now those are dreams I would like to see fulfilled...hey why not. Is that living too large or asking for too much....maybe...we can dream.

So do tell, what dreams do you want to make a reality..maybe I can give you some ideas..input to modify or achieve them. In turn, maybe that will get my mind churning in another direction towards a few of mine.

To keep us focus...instead of taking us off course and mourning our health.

Marijo O.

09-24-2007, 01:44 PM
Marijo -

Lots to respond to!

Wish box. I think this is actually a really nice idea. Not at all cheesy.

I think the word that comes to mind for me in relation to our being a certain way with a "caretaker" around is dependent. I am much more dependent when my husband is around. I do a lot more for myself when he isn't and that sometimes makes me feel better. I used to be HIGHLY independent. I still am to a certain extent which is why my work/disability issues are so high on my stress list.

I actually quit smoking two months ago today. That has been one of the easier things to deal with. It was very difficult for a number of days, but that was it really. Steve quit only about four or five days after I did. It is really amusing to me that my cravings are actually stronger now (I've really been wanting one since Saturday) than they were that first week. Odd.

I did do a lot at once. The work thing is eh. I'm not unhappy that I left my last job. It was by far more stressful, but I thought changing to my current job would help me be well more consistently with the lowered level of stress (I'm talking like a sausage) It hasn't really changed much. There are always going to be little annoyances to deal with and that is certainly true here. For instance, my day started out with my being blocked out of the network. There was no one in IT who could fix it before 10:30 and my whole job is electronic, so I just had to wait.

The dreams are career based, for the most part. I was pre-med since I was a zygote. I changed to English my last year. Gave up med school because I decided that it would just be too difficult to do medicine and have a family and be ill. I do not exactly regret that decision. It is a very stressful life. What I do regret is turning my back on the sciences. I loved biology and chemistry and zoology. I always excelled at the sciences and math. What I did in my spare time was read and write, so when I decided against med school, I settled.

When I went back to get my master's in library science, I re-connected with the sciences. I worked in the Chemistry Library and did all of my research on scientific serials (journals) I loved my research. It was very rewarding and great collaborative work. Unfortunately, there are no jobs around here in that area which is why I've been in government information since graduation. I could go back and get my PhD, but that is also incredibly stressful and I couldn't do both work and school again.

Mostly I'm frustrated. I feel like God has given me some wonderful talents that are wasting away. I'm indecisive about what I want and it is difficult to get my husband to be brave.

Some days I want us to open up a little book store. We live just outside of the city in a rather large suburb with no book store. Other days I want to sell everything, move to the ocean and run charters. The bookstore is more practical and a franchise is reasonable. Unfortunately, I can't get my husband moving on either though both seem to sound good to him. I'm just not the type of person to stick to the status quo and I've been stuck there for too many years.

When my husband and I first got together, I had plans to move far from NC. I stayed for two years, with the agreement that we would revisit. Then we stayed because his father was in poor health. Now we stay in part because his father passed away and his mother would be all alone. I'm just sick of staying for others. I don't really want to be here and I think I could find work elsewhere. Unfortunately, my health has given us the ultimate excuse to do nothing. If we leave for my job and then he is miserable at whatever job he finds and I have to go out on disability then is it fair that we moved for me to begin with.

I'm just sick of this place. This place that I never thought I would be beyond college. Now I'm 30 and I want to experience someplace else. We spend the majority of our time together and I think a change of scenery would be great for us, but so much resistance. So much more to consider with IT in the picture. The doctors I love, the support of my family. I just can't believe I will be stuck here forever...

Anyway. That is all from me today. I might check in again later, but I don't know. Today is just a bad day.

I am at work, by the way. I got in late, so I will leave at 5:30...


09-24-2007, 09:08 PM
Hi AB,

Hope when you arrived home, the bad day got better. I wish I could make it better for you, with a sentence. Feeling helpless for myself, I feel helpless towards another...

I think it is fair to move even with the chance you might draw disability. Maybe it just might be the best thing for your health. It may relieve the stress of your longing to live somewhere else. Cooler climate. Pursuing some aspect of the field you are interested in. All can be stress relievers.

You won't know until you do it. Just because we have Lupus doesn't mean we can't explore or find what makes us feel well mentally too. Fulfilled. Don't short change yourself. Go to monster.com see what is out there nationally for you and your husband. No harm in sniffing around, eh?

Research what medical facilties are around for your care...if you find a potential career opportunity...

For me, the humidity, not just the sun aggravates my Lupus.

I know I took a huge nose dive in my health relocating here in the South when I didn't want to move. I did come kicking and screaming. I wasn't happy, but I made do. Then dealing with contractors. New home. Spouse traveling. Could be coincidental...but I know my pains and fatigue went into overdrive...shortly after arriving.

The deal my husband made with me prior to moving was that he would rarely travel. He hasn't stopped. My husband I talked recently that we would stay till we break even on selling our home. Could be next year or more, but I want to leave before I am 49.

Being in South Carolina a pool doesn't increase the value of the home by much, 10K. That's about 1/7 the cost to install it with fence. If we sold now, I estimate we would lose about 25-30K total cost of it all. But we knew the pool wasn't an investment. Just for our enjoyment. If the market continues at a steady pace, it should happen next year or the following spring if we simply want to break even.

I have my eyes on Seattle again or Hawaii. Lupus, Hawaii??? I know, but I loved it when I lived there...the Tropical breeze, light rain showers everyday....yum. A shack on the beach, palm trees for shade....I'd love it. We've been talking about where I want to be with my health declining.

My upper body, back and chest has been causing me much misery. Uncertain if it is just my muscle, ribs, sternum, spine, lungs, heart or GERD. It all hurts. Sometimes the pressure, the heaviness is relieved if I lean forward or lay a certain way. I hope I am just rusty, pulled something. Frozen up like the Tin Man. My spine keeps making a snapping noise too...so who knows. I will probably end up being a jellyfish. Oh, that would be awful.

Tomorrow is my doctor appointment...I will ask. Don't you have an appointment this week too?

Two months on no cigs...fabulous. Way to go. Longing for the old ways makes me crave a cig now and then. All of a sudden, poof I want to puff. It is what I use to know I miss...so my brain attaches a cigarette to the memory.

Being on disability doesn't mean you have to be incapacitated or dependent. I would look at it as a chance to be independent to pursue one of the avenues you've been eyeing. You can always be gainfully employed and terminate the SSDI.

Have you looked on your annual SS statement to see what your disability income would be if you used SSDI? If not, check it out...

Maybe the government has an educational program/retraining for the "disabled" to pursue another career to help them be "employable"...(you know their lingo..) Maybe score that PhD while on SSDI...

Look at the time, after midnight....I am turning into a pumpkin..

Have a great morning. I'll pop in after my appointment tomorrow afternoon. Let you know what he said...

09-25-2007, 08:51 AM
I'm just swinging by for a second. I have my cystoscopy this afternoon, so I am trying to get some things finished up at work. I talked to Steve all evening and we are going to look into some changes. He says this isn't to appease me, but that we will actually follow through. We will see. Having heard this before I'm not sure when i will believe it, but again all I can do is wait and see. I'm going to start looking and pointing out things for him as well.

He thinks I'm a dreamer (I think) I am, but I've never ever had bad luck trying something. The worst that could happen is that you find you don't like it/it doesn't work and you move on. I cannot and will not stagnate anymore.

Ooh, look at the time. I'll try to give you an update later on the cystoscopy.


09-25-2007, 04:57 PM
Hi Ashley,

How did the procedure go? Do you get the results immediately or have a waiting period?

I hear your frustration in your words. Stagnate. I feel like that too, wondering do I have flies and mosquitos buzzing around me like pond scum. Moss growing on my back.

My husband does the lip service thing too. He likes to say he forgot. But I press and keep reminding him, then I take it upon myself to get whatever it was that I left on the back burner. For relocating, he is more than happy to move, but will frown at a possible cash loss.

I was diagnosed with pleurisy today. Back on Protonix and Naproxen. And if it fails to show any improvement by the weekend, Monday back on...the scaryroids.

Anything good on the tube? Almost primetime, one minute...so I am off. Loving the TV, my friend.

Good night...dreams are not just for the night time..

09-26-2007, 10:09 AM
Marijo -

So the procedure went fine. It was not painful (uncomfortable, but not painful). Actually afterward was far worse than during. I kept on feeling like I had to pee urgently for about four hours and when I did it was a very painful drizzle. Better today though! The meds they gave me turn my pee blue, but it doesn't hurt. Oh and there was nothing wrong with my bladder. He said everything looks good, but is still concerned that since it isn't on the inside of the bladder that it is likely something else intermittently pressing on the outside of my bladder causing a spasm of some sort. This means I will have to have a CT scan in the coming weeks. I don't know when, but they said definitely soon. (Woo hoo!!)

I did not sleep well last night (asleep by 2:30? 3?) then the unrestful passing out that leaves you feeling like you blinked and it was four hours later. I'm struggling so hard today to stay at work. Today is one of those, if I were able to stay home, I would have gotten up at ten and at least felt rested enough to DO something useful, days.

I'm just a bundle of joy lately. I'm not in the hole today, so feel free to tell me everything. I'm just kind of trying to stay awake. It is actually like a 3 pain day which is the lowest I've seen in a very long time.

I'm sorry to hear about the pleurisy. I've been having some chest pain that I think is likely pleurisy, but I've been paying co-pays left and right and I already have an appointment scheduled for the 15th, so I'm trying to wait it out. We'll see...


09-26-2007, 11:39 AM
Hey you,

Blue pee drizzle....Feeling a bit disconnected from the lack of sleep? I am so airheaded when I get little. Like my body is here and my mind is waaaay over there and the two just can get connected.

What could it be that is pressing?

Hey, on the co-pay. If you are seeing the doctor for the same thing and he is referring you about for the same complaint I think, not really sure but they are not suppose to charge co-pays for the same thing or there is a limit...check it out. Or check it out at www.OFIS.gov Might say something there..

I recall the same thing happening to my Mum, and her inquiring about it. Resolution, unable to eactly recall.

I had the chest complaint in July and even told the docotr of it, that is when he gave me the blank stare and also said no such thing as a Lupus headache. Since then it evolved, got huge.. and that is what took me down the hole last week or so.

I feel silly that I felt it was "oh, just another thing from IT" and I had to deal with it. Actually I am a bit bent today thinking about it after reading my notes from the questionaire I take with me, each visit and looking at my previous post around the forum. I am upset at his ignorance and at mine. Or I should say his incompetence. Rheumatologist should know how fragile we are, and should address any all symptoms properly.

I can barely inflate my lungs. Fearing what next, pneumonia, so I am trying to expand them fully through the pain. Crazy 3 plus months like this. Enough pain to take a grown elephant down.

I think I will research his credentials further. Maybe he lacks experience.


09-27-2007, 06:51 AM
Hey Ashley,

Two words for today. Much better. :lol:

Marijo O.

09-27-2007, 07:24 AM
Me too! This fantastic. Both of us relatively well on the same day! How did this happen?

Here are my general updates:
*I think I mentioned the CT Scan, which btw is still not scheduled.
*We've hired a director for our program at work and she begins at the end of October/beginning of November. This is great news for me because it means that we will have someone fighting for us with management and someone to give our team more direction. It also means I might actually get a work plan in place before my evaluation (if I'm still here then)
*I have a wrapper appointment today, which I am using to actually talk about my relationship with Steve. I need some guidance there and I have been very focused on other issues so far.
*I slept relatively well last night and woke up promptly at 6:30 with little effort. This has not happened in recent memory so I know that I must be on an upswing. I'm feeling good mentally and physically today.
*I had mango for breakfast. (You know how happy that makes me)

Okay, now you. Tell me all the good things about feeling better. It will only foster that feeling...

Completely off topic...I use Mozilla Firefox as my browser, which actually does a spell check as you are writing and underlines in red those misspelled words. Every time I write "okay" or even ok I get the underline. I always think, "How can that be?"
Just an aside...

I'm leaving at 3:15 for the wrapper today, so I'll check in later...


09-27-2007, 09:07 AM
Mozarella Fox Browswer, waz dat? As you can tell by my grammer and misspells I use my head. I was using WORD, but too much work. Gosh now that is getting lazy, eh?

Yes, I am in a chipper, chirpy mood. Isn't it funny what a day of a pill or two can make. Jazz it or break it...

My goodies...
* The wad of raw dough feeling has left the esophagus.
* My neck is no longer the stiff.
* The burn throughout my upper trunk. Gone.
* Pain in my chest downgraded to a three also.
* Pain in upper back down to a five.
* I can breathe freely and almost pain free to breathe except one stabbing spot remains.
* I can eat more than a tablespoon of food with out feeling bloated and stuffed like my Thanksgiving Bird. I have a high hopper to begin with. Didn't need that addition inflammation and fluid chucked up underneath my ribs cage.
*Slept six hours straight.
*My lighthouse can see through the fog now.

A few pills? And here I was trying to extinguish the pain with my mind...what a wear-me-out drag me through the hole and back again chore.

Summary the flame was put out. I guess I am smoldering. A fire's slow death. A death I celebrate...woohoooo.

With that woohoo and the word balance, I will not rush that feeling away with over doing it on some hard task my husband or a hiree can do. Savoring this moment...I want it to last and last.

Mind is buzzing with ideas with the holidays coming. Halloween, Thanksgiving...Christmas...colors, decorations, cards, candles, gifts...ghoulies..pumkins and gourds...holly, reds and golds....spider webs and scary masks. Bags of candy, boxes of candy...chocolate, hard and gummy. Twinkling lights and glitter....All candy for the eyes and tummy.

OK, ok, okay, Okay, OKayed, but not OKed nor okayed, OK?

Medical tidbit. When I was in all the pain my back itched, I'd drag out my rake, no rash though. I read that is an indication of pleurisy too..who knew.

It makes me smile to read you got a break from IT.

Alleluias all around.
Marijo O.

09-27-2007, 10:01 AM
Marijo -

I'm seriously in a good place. I have the itchy thing you mentioned, but no rash. Weird. My hips are beginning to ache because it is freezing in my office, but other than that I'm still really well.

I have all of those ideas swimming too! ALL of them. I can't wait for the holidays today. Of course it is sweltering outside, but it is cool inside. Cool weather foods and family and clothes. I just can't wait. I'm giddy with Fall fever. I'm not sure I ever really even thought about it that way before. Fall smells like school supplies to me, but this year I'm excited about the cool as I was about the warm in spring. I'm so sick of sweltering...

I'll chit chat later...gotta run!


09-27-2007, 01:46 PM
So did you get your head shrunk and wrapped? How did it go?

I love your description of fall, school supplies. Erasers and paper..I can smell them. I love Fall, hells I love all seasons till I either get too hot or too cold.

I wish it would get colder here in the winter. Only because I like long coats, winter fur hats and gloves. In Seattle though the winters were mild, the drizzle winter rain chilled you to the bone, so hats and gloves were a must for me. Here, I think I would look silly, probably feel more silly donned in a Alpaca hat and leather gloves. I'll stick with the leather coats and wool hats.

Though, not this past winter but the one prior I recall while in Florida for Christmas I had to go to the store and buy a heavy coat...b-r-r-r-r...

I've just been dinkin' around the house...minding my good health. Entertaining myself with my husband's mending clothes pile, grooming the animals...chatting with family, a bit of Pilates...and walking in circles.

I found another rheumatologist I want to make an appointment with. I figure I will wait till after next week to schedule. He wrote.. A Doctor's Toughest Case: A Girl, a Disease, a Medical University. It is about his doctor patient relationship with this girl who had Lupus. His name is Dr. Walter Bonner. And he was the first rheumatologist doctor in the state of South Carolina. Whoa... I just lost all confidence in my current doctor.

I now being more proactive about my health with IT, viewing IT in a different light he is just not meeting my needs. Actually, I don't think he ever had, despite running, working in a research clinic.

I feel so much better, our better. I just feel my normal. I smiled so hard with emotion I cried. Shoot, I cry about everything. Happy, sad, mad, hormonal...sheesh. This was a feel warm, elation in my heart cry. Those I like. I am really happy you are feeling your good. I can see it and feel it in your posts.

Enjoy the evening,
Mari Cry Baby :cry:

09-27-2007, 05:10 PM
I've been shrunk (?) Shrink wrapped? I'm shrunken...

It was really good. She and I talked all about my frustrations and I feel better. How can that be? She gave me some productive ways to ask for more "me" time. I don't get very much. We are either together or I'm with my mother or a friend. I don't get a lot of time alone in the house, so we talked about how to ask for the things I need without hurting his feelings. I am very straight forward and sometimes I know that comes off as harsh, sometimes it is just harsh. It was very productive.

I like cold weather clothes, but I'm not crazy about he cold. The weather in Ireland was perfect. A perfect combination of spring and fall. I can't describe it. The vibrations of spring, but the crisp air of fall?
Wonderful. It will never be that here. I wish it snowed more here. In the cold of winter at least the sun reflects off the snow. I can even withstand the cold.

I've been meaning to tell you (and may have actually mentioned already...) I'm going to Seattle at the end of November. The week after Thanksgiving. Only for a few days, but I'm still going. I've never been. I'm very excited.

I know all about the crying. I'm your crying sister. I cry at everything: sad, happy, angry, misery, pain, etc. Crying when I'm angry just makes me more angry, which is only funny because I'm not currently crying :)

Have a wonderful evening. I'm going to snuggle up with my heating pad to relax my tense muscles and watch a little tube.

Tears of, um, emotion...


09-27-2007, 06:55 PM
Hey my Crying Sister..wahhhh,

No you never said Seattle. Whats' bringing you there? Be prepared mentally and clothes wise...it will be gray skies and more than likely a slow drizzle. November can be windy. And no shame in using an umbrella. So, what part are you going to, what will you be doing. You'll enjoy Seattle even in the rain. Go back in the Spring and see what the rain brings. Everything blooms..and so green. Big leaves and lush.

Here in SC everything browns so early and most plants have little to tiny leaves. The leaves remind me of confetti on a branch.

I had been so busy with this house and being ill I haven't been home, to Seattle in a spell. Maybe next Spring.

I think about the alone time my husband doesn't get in the house often. Well, unless I am shopping but he does hang in the media room alone for hours. Loves his TV and we have different show interests. Me, I am always here...but he does travel. Maybe that is why he nevers says anything. I think he would feel odd in the house without me. I know one time I was gone while we lived in Seattle for 4 days. He called me atleast 12 times a day. I don't do cell phones anymore.

I was just takin' a spin in here, seen the PC on..I am going to call it an early night. Shall we shoot for an eight hour sleep? Gosh, that would be lovely..straight through, not an opening of the eyelid...I miss those nights soft beds, wrapped in a downcomforter and fluffy down pillows. Now it is a firm beds, a thin quilt (hot flashes) and firm pillows. I might as well sleep on the floor, eh?

Here's to the sheep stayin' in the pen all night.

09-28-2007, 09:40 AM
I'm just popping in for a sec to see how you are and assure you I'm well. I have to get a cortisone shot in about 45 minutes, so I don't have much time. I'm at work, things are going well. Steve isn't feeling well, but I have a decent amount of energy today. Work is picking up big time, which means I have to budget my time so as not to get too stressed out by it all. I'll be checking in here twice a day (at least) for short reprieves!

I do hope you slept your 8 hours last night. I missed that goal by a bit, but like I said I'm doing pretty good today...

I'll write after the shot...


09-28-2007, 11:28 AM

I am still dinkin' about. I've been popping online here more often. Makes me not over do, a break from my a slow life and hopefully my words helps someone else and I learn a bit more about IT. A day in the life of another with IF. I am still trying to find my place...

Feeling still well, slept 2, up 1, slept 4. I didn't wake for any reason, I just think I had been use to waking every two hours my eyes just popped open.

My drapes and shades arrive, so I have been looking at my gazillion paint chips for a color to tie it all in. Not pleased with the roman shades. They are sheer, irridescent, two look ivory and the other two look like a gray white. Dirty like..hummm. Wondering if I reorder two more which color would I receive, or can the idea and leave the other ones up. I like the drapes...ah what is a girl to do. I get so indecisive.

If I wasn't married, I'd just make a decision regardless of the cost. If I didn't like it, or wanted to change something up I'd give it away and get another. Shame on me, I know. With being married I guess I feel I should be shameful for such waste and so I try not to be. I just like all the new colors, textures they have out there. And too I think with Lupus fog I don't choose things right, like I use to. It is like... I like so much, I don't know what I like..Sausage sounding...yep!

Cortisone shot for..may I ask...I think I need one in my shoulder. I will have to schedule an appointment with my primary doctor to see what is going on. I think it is a herniated disk or just a pinched nerve from inflammation. I don't think it has any thing to do with pleurisy. But left on treated that pleurisy can wreak havoc. So, who knows. Maybe I just need a good deep massage. Release all the toxin built up from being inflammed. Or realign my core muscles..something.

Someones at the door....laterz....Marijo..

09-28-2007, 01:05 PM
The shot was for my elbow. Golfer's elbow, to be exact, - though I don't play golf! It is actually Tennis Elbow on the inside of your elbow instead. They didn't give me the shot because, well I don't really know why, but I have to do physical therapy instead. 3-4 times/week for the next 4 weeks, which I cannot afford timewise. I just don't have that many hours of energy in the day. It is ridiculous. So no relief from my pain. It is just stupid really. (Frustrated, can you tell?!?)

I'm so ready to go home, but I have so much on my plate at work, that I know if I don't get something done before I leave I will be thinking about it all weekend. Isn't that terrible? This is how I used to be before IT. I wonder if wanting to take my work laptop home is a sign of improvement or regression...


09-28-2007, 04:13 PM

It was a delivery...my wooden box hand carved in Poland, but bought from Mia, New York. Beautiful with bronze inlay. Manly yes..painted in greens and browns. His favorite colors.

Humm, regression or improvement...toughie. Or perhaps your improvement will cause a regression...

My husband lands tonight, should be driving up at 11PM and dinner will be served. Late eating keeps me fat.

Have you done a google search on how to do therapy at home? Or when you go to a session or two ask for a week advance therapy sheets. I had to do elbow theraphy before but it for my nerve. Wasn't flossing over the elbow like it should...but you know what..come to think of it. I think it was Lupus related and not the nerve. Just deep pain, like someone was carving my elbows out...both. But the exercise did help to a degree. Probably building up the muscles, tendons around it to support the pain. Hummm...maybe I need to do all over body resistance exercise with my rubber cords...

I hope you left the work..at work!

Enjoy the weekend, they only come once a week. Only 52 a year.

09-29-2007, 05:27 AM

09-29-2007, 11:04 PM
Hey! How is your weekend going? It is 2 in the morning and I should be asleep, but alas, I'm not...

We've been watching tv and Steve fell asleep. I wish I had left all of my work at work. I have a meeting on Monday with someone from my old job. I'm looking forward to seeing him, but I have to pass along my knowledge for my replacement and because I was so sick toward the end of working there and I've struggled more or less since then, I haven't pulled much together until now. I spent some time on it last weekend and had so much on my plate this past week I had to change the meeting. So here it is technically Sunday and I'm still not completely happy with where things are. I'm using some of their original documents to clearly indicate what I did and my own recommendations. I've essentially pulled together a final report as if I were a consultant.

Anyway, I'm not even sure why I went on that ramble. I've been very emotional today. Steve and I went for a ride earlier just to look around my favorite neighborhoods downtown. I love the fall. It was really pretty amazing outside tonight.

Do you feel more indecisive since IT really came on? I feel like I can't quite express my emotions sometimes. I know I've felt whatever this is before...melancholy, nostalgic, sad, pleasant sensory memories...it is too much to explain. I find that I experience this a lot. I know the emotion, I've felt it a million times before, but describing it is no longer possible. I think people recognize what I'm describing, so clearly I am able to describe it to a certain extent, but I am never satisfied with my description. I know I could put it more accurately, but somehow I can't.


I leave for Denver on Thursday. This is going to be really long couple of weeks. I will be working/traveling straight from tomorrow (hopefully not TOO MUCH work) through Friday the 12th. So essentially 13 days. On top of the working I also have my CT scan on Tuesday. I'm not whining. I'm genuinely nervous about what this is going to mean for me. Work non stop for 13 days, go into the hole for 3 months? This will be a real test...

Hope you are sleeping. I'll talk to you tomorrow or Monday.


09-30-2007, 01:32 PM
Hi AB,

Taking five from my Sunday. Primed and spray painted my rockers and swing on my front porch. Enjoyed the cool breeze as I hid behind the shadow of the house spraying.

Too many changes, too many life changing events have happen to me in the 7 years to actually pinpoint when I became indecisive. Hormones? Marital stress? Medication? Strengthening of Lupus? Pain? Food allergy? I know my mental fog comes in huge waves, fierce and leaving me in a stupor that I have to strum up all mental energy to make a decision. Then I question that decision. Many, too many decisions that I HAVE to make, not wanting to..that came to be from being married.

Or is it from the decision I have made regarding marriage, relocating, building a new home, hiring contractors and seeing the outcome and not being pleased? Ah so many variables. Or did all the stress from all these events stir the IT pot, creating havoc mentally and physcially that I don't even know anything anymore. Perhaps it is just my relationship with my husband, creates stress. I don't like it. Times I contemplate leaving.

Why? A few reasons. One He is always traveling. If I am to be alone, hells I just might as well be. I don't like the role I have been thrust into, solo and a sole decision maker. If I am to be alone with the title of Mrs...I would rather be alone and hold the title Miss. I would have a different life then I do now. A mentally calmer life. Two...I don't think our relationship will change. Counseling, books, words...tools that he is too lazy to use or to apply daily.

It really it too big to explain in a forum.

Do you think you feel those emotions, sadness, belonging, home recalls is because you miss what was, who you were before IT, before being married...longing for what was? I get like that. Then I snap out of it..and I am back in the saddle again being the director of my life. If not, then I don't know. Today, I feel like I don't know who I am...running aimlessly looking for me in my mind, in my emotions, in a food dish...running, running. As you can read...my thoughts with my husband are not in the best place today...

Do you think IT is making you feel you can not express yourself accurately? Or is it because we want them to feel what they can not, our experience? Do we want someone to feel exactly what we do because it gives validation... to feel we are not weird or different? BTW, we aren't. We can create a reaction, but we can't create their experience...too many variables in each human.

Still going to Seattle? What part of Colorado? When we were relocating Denver was on our list...

Don't worry about what is ahead in your work schedule. When you look at it..look at how you can keep it balanced with your health. What do you need to do to keep yourself healthy? Modify the hours, more breaks, what you can do balance your work with the days at hand, ensure you have healthy snacks, do stretches at your desk or in the bathroom, do yoga, talk a short walk at night before going to bed to ensure a restful night. Find shortcuts to make at home chores, task easier. Balance, decompress daily.

I am decompressing right now...hisssssssss..deflating my brain. And after I'm done typing I am going to do some stretches, shower and make a salad and hang out in my room. One and half day with my husband and I feel like a raggy mental mess.

All done typing..
Toodles..anything good on the tube tonight?

Oh, BTW..the test message.. I was trying to see if I could add an image and well, I guess I don't know how to or the IMG doesn't work ...

10-01-2007, 04:01 PM
Marijo -

I know you are struggling in your marriage and some days I feel I am struggling in mine. I feel selfish for wanting some of the changes, but this is my life too. I want things to be easier. I cannot always be the outlet of grief or misery as I'd like. I'm not always the best person to talk to about being unhappy. I am trying to figure things out at home as well. My husband doesn't indicate that he feels we are having problems, but I think this trip to
Denver (that is where I'm going) will be good for both of us. I hope. I know I will miss him and he has been especially down lately so I'm a little nervous about leaving him for four days, but I also know that when I am away he has more motivation to get out and visit his friends to do things we don't do together.

I wonder if you and your husband were having these same problems before you moved? It is isolating to move and have your spouse always traveling. It sounds like neither of you have had the opportunity to establish relationships outside of the home (this is one of our problems as well)

IT, I think is behind much of my sad emotions. Steve and I talked on Saturday night and I feel a sense of loss. My wrapper and I talked of that too. How IT really is like a death in a way. I feel incredibly lucky to be alive, but my life as I knew it is gone. That is okay, I'll adapt, but I'm entitled to feel that loss. Keenly. It isn't giving up to be realistic. I just have to find my new happiness. I feel empty some days.

I think I've felt especially sad lately because I thought I might be pregnant and I'm not. I really knew this wasn't the best timing because Steve and I are working through some things, but I want a baby so badly. I want so many things so badly. I'm impatient for things to be on an upswing. For me to feel like I'm moving in the right direction again.

I'm feeling that more and more (slow and steady...) I went to my old work today for a meeting to pass the torch. It was very affirming. They were all so excited to see me. Lots of "You look great!" and "How is everything? We miss you!!!" I even got a couple of "this new guy is not you, by any stretch." It was very nice. I came home with a nice rash on my face though so that was a bit deflating.

I'm tired tonight, but Steve is at bible study so I have the place to myself. i'm going to go enjoy it. I'm at peace today, though I may not sound it. I pray the same for you.

Hope you are away for joyful reasons...


10-02-2007, 08:41 AM
Prayers and Hugs.

Please God, let Marijo be enjoying every moment of her life today. If she is in pain, please ease her struggle and lift her spirit. Today as everyday, Lord, she needs your blessings showered upon her.

Post when you can.


10-02-2007, 09:49 AM
Hi AB,

I'm doing fine..thank you for your prayers. Not elated, not sad…just am.

The short of it...when you asked about the isolation and travel, the travel has always been there despite promises it would cease, after wedding vows, after this project, that project, after we relocate, after I sell my house, after he is self-employed, after he returns to be an employee. All which I had supported except leaving the western area of the US. And to date the travel has not decreased.

Isolation started when we headed east. Pit stopped in Ohio, too segregated for us. South Carolina an invisible line can be felt and we are treated differently. Feelings we had never felt in Seattle, so that is a new emotion for us...but not new to countless others throughout the world.

My Lupus presented itself ten-fold since relocating and then toss the pain of a herniated disk, then a cervical spine surgery in the mix I have been isolated so much by them too.

I don't mind doing things alone. I just miss a close knit relationship being near. Family..I am from a close knit family. So, I call via the telly, hand write letters or email. In Seattle I have friends, friends with children from all social and racial groups. I miss my world being colored with different cultures, different foods, and different languages.

I am a very outgoing person and I feel I have been snuffed out by IT, by my social environment and by my marriage. Adapting to IT and the lifestyle it brings, a new city being alone it has been hard. But my mind is always searching for ways to make the change more palatable.

But all in all, IT is the culprit for many things. Makes me noncommittal, so isolation settles in because I am not socializing, looking for people who I feel good being around. My husband gets his social needs met by his travel, and meeting his co-workers in each city regardless of the project. But I worry about him not having a dear friend near. His work is his life…and leaves little time for me, or his family across the pond.

I know what you mean with having IT, mourning ourselves…it feels like we are dying a slow death. A soul toting a carcass around is how I explain it.

Today is just a laxly day, have been reorganizing files, bringing fall clothes forward and summer ones way into the back of the closet.

Other then that..I’m good. You too?

10-02-2007, 10:29 AM
I"m fine. I have the CT Scan in a bit, so i'm looking forward to that ;)

The isolation is so hard. I know about close knit families. Mine is that as well. I also know about the segregation here in the south and it is not easy. My husband and I are both white, but we have very close friends from lots of races. One of my best friends is an african american man and we are alone in public all the time. There is a hesitancy when we are together from anyone we come in contact with. It is interesting because he and I grew up about twenty miles from each other and we have always been racially open in every aspect of our lives. Our experiences are so similar and so different.

You know for all of the beauty of Ireland, the lack of racial diversity is one of the first things Steve and I noticed. It was like being in an alien nation and very off putting. The funny thing is, I don't think they are racially closed minded, there is just very little actual diversity. Strange (or naive?)

I'm glad to hear from you. I wasn't too worried. Everyone needs a break, but I thought I'd throw a prayer out anyway :)

Off to drink my barium slurry...


10-02-2007, 11:23 AM
Hello Ashley,

Oh that is right, today is your Scan. Hey, don't get any on ya..burp. I meant to make a mental note of this day...A note on what..my dried up fog covered brain...Roaring at myself. Sheesh who was I kidding. I hope they are able to tell what is going on and they have a remedy for you.

Yep, many countries do not have much diversity. Diversity comes about when people move about.

Last year we went to a fest called Moja here. I was one of the handful of white toned people in the crowd and we were the only "mixed" couple. Not that we mind being different but just observing the social interacting in Charleston. People looked, I smiled with a big... Hello, how are you?

When people say they don't see a person color, I never understood it. If one feels the need to say they are not prejudice then they should just say those words. I see each and everyones individuality inside and out. If I blinded myself mentally how could I appreciate who they are. I would feel like I was denying who they are and all their beauty.

Let me know how the scan went..going back to work afterwards or home?

10-03-2007, 05:45 AM

I went home after the scan, of course there will be no word until next week, but I'm assuming everything looked fine. They gave me a cd of the scan to take back to my urologist, but of course I don't think I have the software to open it.

I'm getting another stupid cold, so that is annoying. It is making me even more ill and I've been lashing out at steve, which I don't want to do.

I'm slammed at work prepping for my trip tomorrow...Denver until Sunday. I don't know what my internet access will be over then next few days, so if you don't hear from me right away, don't worry, I'm likely fine and just unable to post.

I wonder now if I've said that I don't see color. It doesn't even sound right on my tongue. I love color and all of the cultural differences that come along. It is so funny because I have a friend Mike who I talked about all the time in college, we are still pretty close, but for awhile there we were spending a LOT of time around each other. I remember when my mother met him for the first time. Afterward, she said to me, "Mike's Asian!" To which I replied, "He is." She wasn't being racist (my original impression). I had been talking about Mike for so long, but never mentioned he was Asian. Her mental image was all akimbo. In this case it wasn't that I wasn't aware that mike looked different than many of my other friends, but he was adopted at infancy and raised in NC. The culture he was raised in was essentially the same as the one I was raised in (maybe not as crazy...)

I don't know what any of this means. No one is color blind. I remember feeling like that was such an eye opening experience, but I'm not sure how. My family is Italian (mostly). I was raised with lots of Italian tradition, but I still think of myself as white. There is no Italian category on forms for race, but wow are the italians different from the irish (also in my family). I like the cultural differences, but I think I've always been annoyed that we all get lumped into categories.

Anyway, now I'm just rambling.

I have to get back to work!

I ate junk last night for dinner which I haven't really done in awhile. Today my skin hurts (face, neck, shoulders, chest, back) Are these two things related?!?


10-03-2007, 07:30 AM
Hi AB,

A cold. What is that? I think I mentioned it here or in another thread I haven't had a cold for years, over 15 close to 20. Weird. Not the flu or anything of the like. Times I thought I had the flu, ached one day..poof gone the next. So, I thought..strange. Must have been IT sniffing around before making itself completely known.

I use to dose with mega vitamin C, so I contributed the lack of colds to that.

IT would show its ugliness in my nose. Thinking it was herpes simplex 1 I had a culture done. Nothing. Had another culture done...nope. I wondered, did they think I was a coke head. The sore which took over the inside of my nose came and left over 26 years. Targeting me, oh, atleast twice a year. Who knew. I haven't seen one in five months. They were dreadful, not only painful but I could smell the faint smell of the wound. Ewww.

Today, I can't remember if I toook my pills. I know I took the Plaquenil. I was in the midst of refilling the pill box. Distracted by the animals. Then when I looked at my pills, the Plaquenil I had in my hand was gone, the pill box hadn't been refilled, I don't recall twisting those safety cap bottles, nor was there any evidence I drank my drink. I scoured the floor, counted the pills..left me even more confused.

I know I hadn't miss a dose of the Protonix, so I counted those...sheeesh. I had extra pills. So, whats a girl to do. Wait for the pain and burn...or chance it and double dose.

Oh, that reminds me I came online to look up what a double dose of Protonix will do... be right back before I forget. And who knows I might forget to come right back. Don't wait up...

I'm loving the wet cool weather..is it up there too..
Enjoy your morning..see you,

10-03-2007, 07:35 AM
I am not going to OD...

10-03-2007, 09:24 AM

Ramble, amble..I do it too...and more than likely before this post is through.

I am back..I took a first, second dose of everything. Maybe the dog distracted me so the cat could eat it. Am I going mad?

Sorry about the cold erupting. With everything in the pile and toss that onto it. It does make one more irritable. I feel for you. Write Steve a note..or pick up some goodie on the way home, flowers, something from the bakery or..

Your Mum's response was probably also to the American type name. I have a few friends in Seattle who immigrated from Phillipines and they change their names to Eric, another to Dave and another to Marianne. My husband's brother goes by John. Like Mike, by the variations of spelling we usually assume they are from...guess...Mikhail, Miguel, Mikko, Michele...

So what's in a name? Everything. Some people get offended if you can not pronounce it correctly. Me after we moved from my home town as a child...everyone pronunced not only my first name wrong, last name too and now my married name. I answer to anything, be it close or far off.

I have no problems with lumping because I know no one can be lumped into one category.

If we don't chat before your departure, have a safe trip and check you baggage in even if it is small. Advice my husband says. BTW, he lands tonight. Our anniversary is tomorrow. I have written a poem for him, not marking a anniversary but to let it be a day for a fresh start and next year, same date it will be a first anniversary and not the sixth.

Denver is the Mile High City....you will yawn from the thinner air. With IT in the picture, your mouth will always be opening and closing I suspect.


10-05-2007, 06:11 AM
It is early in the Mile High City, though not on my internal clock. I'm feeling pretty good IT wise. The flying made me very sleepy, but ultimately I got a good nights rest and I'm feeling pretty good today.

I think I have a sinus infection, not a cold, unfortunately. I will wait it out. I seem to whine a lot on here, which I know you don't mind, but can't be good either.

I talked to Steve this morning. I really feel a sense of relief to have this work related break. It is harder to touch base with him and I do miss him, but we've been needing some alone time, I think and here it is.

The air is thinner here. Denver is not at all what I imagined. It was so flat flying in with Mountains in the distance, very odd for me. In NC when you get to the "Mountains" which are no where near the size of the Rockies, you are just in the mountains. there are mountains and valleys everywhere. Here there is flat land that just leads right up to a mountain in the distance. Of course, I've essentially seen Colorado from the air, the drive to the airport and the walking downtown. My friend Jennifer says that in Vale, you know you are in the mountains the whole time. So far I'm liking it. My conference starts in a bit, so I have to run, but I wanted to say a quick hello from Denver...

Have a great day.


10-05-2007, 06:19 AM
quick test reply

10-05-2007, 12:40 PM
Hi AB,

I know, isn't it flat. Especially if you are on higher up floor. We had a hotel suite there for about a year by Cherry ?? Mall..gee I can't even remember the name. BUt once out and about it didn't feel flat, with the mountains off in the distant.

The air is pretty dry in Denver so that might aggravate your sinus more Maybe a dab of Vicks or a saline spray might help. I know when I was there I felt drier..then my already dried up prune self.

We like Denver because of the seasons, and B (short for my husband. I figure he may not want his name online since it is a bit distinctive) liked it for the skiing though it was a bit of a drive. A bit like Seattle we thought. Warm for swimming pools...clean city...good eats.

Here in this Summerville/Charleston the food is always a surprise and very heavy. I mean a surprise in as how it is stacked. They stack it like pancakes...first the sauce, then the vegetable, next the starch and on top of that crowned with the meat. Last night my dish went like this... Chiptole fondue top with a mashed potato cake about the diameter of a tea plate. Next layer fresh saute green beans, broccoli..topped with a rosemary crusted filet mignon. It looked like a mound. I barely ate it, it was just too heavy on the tummy. Felt high in fat as my stomach grumbled from the Protonix. I envisioned a slightly different version. B's looked just like mine except he had a raspberry sauce, roasted potatoes chunked, saute leeks, with a seared salmon filet topped.

We've eaten at several places like that here..is that a southern style..heavy and high? Other restaurants out west..when stack it usually is a lighter fare of food but not so many in the stack. Here it is like a Thanksgiving dinner stack.

Do you return to NC this weekend?

That is great IT was left behind too. I feel pretty good myself. I keep going around in my mind to see my primary doctor. I just don't want to be probed. My stabbing pain is still there...maybe I should be more concern, but right now I am just relaxinf from being lazy and thinking. Keeping the mind focus...martial woes..

It is an all business trip or fun too..do you return to NC this weekend?

Enjoy Denver,

10-06-2007, 05:54 AM

I read your post last night, but I was sooo tired I didn't have the will to respond. The time change is doing funny things to me. I know the clock says 9 pm, but I seem to have no problem dropping into bed (I also realize my body thinks it is 11, but ultimately if I were at home I would NEVER go to bed at 9) I wonder if my natural rhythm is that it my body is alway two hours ahead :) Perhaps when I go to bed at 11, my body is thinking, "It is 1 AM GO TO BED!!!!) I still have sleep problems at home though.

I have to say I've been sleeping like a baby. I woke this morning at 5 am local time and got up, when for a coffee in the lobby of my hotel, came back to my room to do a little work before my conference day begins. It is primarily a work conference, but a friend and I have been going to dinner and having a few drinks. Today we are blowing of the mid day meetings to go do something fun (aquarium??) I don't know. I'm going to try to get to the visitor's bureau before we commit ourselves to that. It is only two blocks down. LOTS of stuff going on here this weekend. The Rockies are playing here, Broncos and Chargers are here tomorrow, Race for the Cure is happening this morning, Oktober fest starting at 11 and an Arts Festival kicks off today; yet it still doesn't seem that overwrought with people.

I wish we had rented a car. I'd like to go driving and get closer to the mountains. I love to drive...

Okay, I better actually get some work done this morning. My thoughts are with you and your marital woes. (I understand the B thing. Steve is such a common name and honestly, he and my mother are the only ones likely to see this. Some days I think to point him to actually read our little conversation here. It would be painful for him at some points I think, but I wonder if it would give him a different perspective. He knows me better than anyone, but somehow it is easier to talk to you about my IT issues. You understand in a way I am too exhausted to explain on some days. I wonder...

Have a great Saturday.


10-06-2007, 06:55 AM
Hi AB,

We loitered in the University area mostly, went to the Wind Caves, Went to Breckenridge...shopped, swam...and ate all around. Martins serve a steak the size of a roast...every thing is ala carte, displaying all foods raw. Many places have cigar lounges...

We went to the aquarium I think...usually we tour those in every city. Gosh, my mind is blank.

Today I am off to the Citadel Mall...in the market for new eye glasses.

B is sleeping, I am showered...feeling pretty good physically..mentally flat lining.

Do you still dose with Protonix? Or did I ask that already? When do you head back to NC?

Enjoy your Saturday discovering Denver,

10-06-2007, 04:41 PM
Hello! How was Citadel Mall? Is B up and about now (I'm guessing he is :) )

Denver was good. I enjoyed the aquarium. I surprised by the tigers in the middle of it, but they were fascinating. I think we are going to be incredibly low key tonight. I have work to do and honestly, I'm zonked. I started early this morning and my body is not happy that I walked the two miles from the aquarium to the hotel, thought at the time it seemed just the thing to do. I feel good that I did it and absolutely exhausted. I'm going to make a cuppa (Irish version of cup of tea) and get to work (I guess). I'm all about the parenthetical thoughts lately. I wish you could hear them in my head so that you could really hear my voice when you read. I like to think of it more like you are reading a book though. I hear my own voice when I read your posts just like a novel, but I add my emotions in a way that helps me really hear you...talking like a sausage.

Anyway, I do not know what protonox is. What is it taken for?

I'll be on and off tonight if you get this and feel up to responding.

Hope you had a beautiful day.


10-07-2007, 06:13 AM
Morning Ashley,

Oh, I thought you took Protonix for GERD? I was wondering what your gut and head felt lke taing it. Mine rumbles like a washing machine, with or with out the food. Been a bit dizzy. If my head isn't balance or straight forward while I stride and hang a turn too quickly I get so dizzy. So, my stay at the mall was short.

I'm wondering if it was the Protonix....surely Naproxen wouldn't be doing that..ya think? Maybe hypoglycemic kicking in again. Thought I had that under control a few years ago.

No glasses were purchased. All they had hanging from the walls were the rectangular frames...about the size of the bottom of a cigarette pack. I have some. I wanted something larger to cover my eyes with Transition lens...humm maybe next outing.

As we cruised about new areas....there really isn't much at all here. By the mall not a restaurant in site. Seems like small towns, a diner, gas station, a grocer mart all strung together by a subdivision created in the swamps. The more I explore the less I like. Not really quaint, nor cute just everyone creating their space. Every few miles the picture is the same. A diner, gas station, a grocer mart and a subdivision.

Pit stopped at Middleton Plantation, had been there before. Beautiful grounds. I knew they had a plant nursery, so I wanted to see what they had again. Toted out two Starlet Jasmine...but still not the plant I had seen on their grounds and was in search for, the English Laurel.

Two sausages conversing...we understand the lingo.

I dozed early last night. In and out as we watch two On Demand. Zodiac and 300. Didn't stimulate my mind in any way. No laughing, no screaming nor puzzling. Just filled four hours of my life with useless info and fifteen minute snoozes with dreams I can't recall.

B is sleeping, the dog was let out, the brushed their teeth with a few tartar controll snacks and I with Crest. I've only been up for 30 minutes and I am ready for another nap. I am off, maybe the Hour of Power is still on. I enjoyed it when Dr. Schuller gave the sermon in the glorious Crystal Cathedral. Beautiful.

God loves you and so do I,

Today's Devotion by Robert H. Schuller

"The flowers appear on the earth; the time of singing has come and the voice of the turtledove is heard in our land." -Song of Solomon 2:12

Too often, O God, the sacred calm of your still small voice is overpowered by the roar of the traffic, the moan of ambulances, the wail of sirens the growl of buses, the rude interruption of the doorbell. Jet airplanes, trucks, trains, television, telephones fill my everyday world with noises my ears were never designed to tolerate. An irritating assortment of unnatural sounds drowns your silver-soft-voice. Oh, my Lord, there are birds winging and I do not see them, children playing and I do not hear them, flowers blooming and I do not enjoy them, clouds sailing silently through the soundless sea of space and I do not see them! God, you are living and moving and I do not feel you! Increase my awareness of the throbbing reality of the dynamic spiritual universe around me, Lord.

God, move in the thoughts and feelings within me now! I am surrounded with an awareness of You that gives me a new lease on life! Thank you, God!

10-07-2007, 08:14 AM
Good morning (almost lunch for you ;) ) I think I keep forgetting, but I am leaving today to come back east.

I know what you mean about the generic, not-so-quaint landscape. We have more and more of that in NC too. I don't like it either. Where I grew up, there were still great neighborhoods, that had been there forever. Places where you actually met and got to know your neighbor and grievances were aired in your kitchen, not in a home owner's association meeting. I hate our home owner's association. I really want to just sell my house, but alas we will wait for the market to rebound.

I'm not sure if I told you about my trip to the aquarium in detail. There were tigers. TIGERS at the aquarium. They were incredible. Well worth blowing off part of the day for the trip.

I'm so sleepy today. I am not really looking forward to the flight, but I am anxious to get home. I have to work the rest of the week as if I didn't spend all of my time here this weekend. I'm not pleased with that. On the up side, I will now have some comp time so I won't have to worry as much about getting sick and getting docked. I actually want to take a mini vacation. Everyone I work with will be out on the 17th and 18th and I'm thinking I just might take those days off as well. Why not? It would be lovely to have an actual break that wasn't me lying home sick.

We'll see. Now that I've spent some time on my own, I miss Steve as my travel companion.

It is so funny that I am so open in this forum. I guess I hope my words are heard and that others will find some comfort in them. I've always said what a moron someone would have to be to spill their life story online for ANYONE to read, yet here I am tying away like a daily journal.

So silly.

I have to run. Thank you so much for the scripture, it was lovely. I needed the peace today.


10-08-2007, 09:05 AM
Hi AB,

Back in the saddle in NC already? How did you fair today, still recuperating from seeing the lions and tigers and bears, oh my. Did you solve the mystery of why the Tigers were at the aquatic place?

I know… who knew 10 years ago we would be typing to people in other countries, in another state sharing our intimated thoughts and details about our lives. My Mum always had said don’t write anything down that you don’t want anyone to know. I guess I don’t mind who reads me. I am pretty much an open book and have always been that way. Lessens the load one carries in their heart and mind. Removes the fear too.

B flew out this morning for another week. He is trying to get his schedule adjusted. Aiming for one week here, one there. Despite our differences I still miss him. He has a duo personality and I really like one but ugh… the other I tolerate which is very rude and short. Ah, maybe it comes from immaturity...spoiled, bratty. Or maybe his way of control…the situation.

I made an appointment with my primary doctor for tomorrow. My chest and back pain is still here. I’m not looking forward to knowing what it is...but to know that there will be a possible end to the sharp pain. But all in all I feel I am in not too bad of shape. Figure shape ah, that is another story. I think my hormones, peri-menopause is putting a damper on the weight lose. I don’t think I can go much lower in my food intake. I’ve had my thyroid tested, all within range. I am trying to up my exercise but I fear of going backwards in my joint and muscle pain. I was doing great when I was swimming…and I am not ready for public display at an indoor public pool. Humm..I don’t know if we even have one.

Nothing on my agenda today. I have many things I would like to do…but will I do any? So many, I guess to accomplish them I have to start with one.

I feel a bit ditzy today. My pills seem to be potent lately. I think the Naproxen is increasing the effects of Ultracet. When you read the side effects it is a wondering I haven’t fallen down. They all say dizziness. So, maybe it isn’t hypoglycemia after all. Hard to read the signs..and to pinpoint.

I hope your trip home was uneventful and you feel good after your travels…

Enjoy your lunch. I am going to get something to gnaw on too…

10-09-2007, 03:45 PM
Okay..did you decide to stay in Denver or did it wear you out girl and you're tucked in bed? I hope you are doing well, great, wonderful..okay?

Well, my day..I went to my PCP. He saw through my facade and all he had to say... are you doing okay mentally, because I can't imagine you would be with all this pain. You want to talk about it.

Gee, when someone says those three words, "are you okay"..woosie..woo that can open the flood gates. I tried to sucked in, swallow it down but the ugly cry like a Halloween mask covered my face. I felt twelve again.

We talked of various aspects of me, pain, physical, mental..the IT usuals. And being alone. He suggested anti-depressants but I thought it doesn't change the pain, I will still be alone with IT. Change my outlook about IT he said...hummm. Perhaps. Suggested counseling...I wondered... so I can blubber and wear a scary mask once a week. I need to let it out my PCP said. Humm..unlatch the bleakness? My little mind can't wrap itself around the concept of how counseling will help me deal with pain, being lonesome and IT. Can one be guided through it and what will that change be? I guess I am missing a cog, because I don't see it.

If I have to mourn what was, I am still here. I guess I just see it as an endless vent. I want the pain to stop, IT to leave. Would Lexapro or Cymbalta do the trick?

Are you on any anti-depressants? Lexapro..what is it like?

I also received a cortisone shot in my rotary cuff for the pain in my arm, back and chest. If in one week the pain doesn't stop he will schedule an MRI. But you know what it feels better already. From a 10, it is teetering at about 6-7...and it has only been 4 plus hours. So, hey maybe anti-depressants not required. My Ultracet, Naproxen wasn't even touching the pain.

I can mentally block alot of pain. The Protonix took one area of pain away...then this just magnified and was taking me down. I almost fell into that..that stupid ole' hole again.

Purchased myself five bunches of flowers and created three small table masterpieces. I love my flowers...

This was my day in the south. I hope the day up north for you was good.

It was 93 today. I should don my swimsuit..let me go see what the H2O temp is... laterz..tata.

Extra, extra prayers for you...AB.
Oluwa :sleeping:

10-11-2007, 09:11 AM
Hey you..

Are you running around work with your head cut off..or did your trip catch up to you. Laying in bed eating Bon Bons or red seedless grapes or a succulent mango...?

Ah, hells...we can indugle ourselves to make us feel good. At least one of our senses. Or fill our eyes and sit outside and watch Fall come in. Despite our warm spell the leaves are still changing, speckling our tropical blue pool water with browns, reds and yellows. Or we can fill our ears with gospel or your favorite tunes. Donnie McClurkin always picks me up, even Tina...Proud Mary. The beat gets me stirring...can ya hear it..

Y know, every now and then
I think you might like to hear something from us
Nice and easy
But theres just one thing
You see we never ever do nothing
Nice and easy
We always do it nice and rough
So were gonna take the beginning of this song
And do it easy
Then were gonna do the finish rough
This is the way we do proud mary

And were rolling, rolling, rolling on the river
Listen to the story

I left a good job in the city
Working for the man every night and day
And I never lost one minute of sleeping
Worrying bout the way things might have been

Big wheel keep on turning
Proud mary keep on burning
And were rolling, rolling
Rolling on the river

Cleaned a lot of plates in memphis
Pumped a lot of tane down in new orleans
But I never saw the good side of the city
Till I hitched a ride on a riverboat queen

Big wheel keep on turning
Proud mary keep on burning
And were rolling, rolling
Rolling on the river

If you come down to the river
I bet you gonna find some people who live
You dont have to worry if you got no money
People on the river are happy to give.

Big wheel keep on turning
Proud mary keep on burning
And were rolling, rolling
Rolling on the river


Well, girl...Whatever you are doing and where you are I hope you can find a break and enjoy a bit of the day too.


10-12-2007, 10:44 AM
Okay...Someone is going to think I am looney typing to myself. Humm, well I haven't answered my post, so I guess I am alright. Are you alright? I hope so...

Thinking of you...asking for all good things to happen to you, and soon.
Marijo O.

10-15-2007, 02:51 AM
No one is going to think you are looney typing to yourself. We all do it once we've started these conversations. It is a way to say, I"m still here. I'm still thinking of you and it is so greatly appreciated.

So much to respond to. I'll do my best this morning, but will likely have to re-respond this afternoon. I am back from Denver. I took last Monday off to relax and recoup, then got a bit disgusted with my self when I didn't leave the house all day because I actually felt pretty good. Worked on Tuesday. Went to my wrapper (more on this in a minute), Had a stomach bug that lasted Wednesday-Friday. The anniversary of Steve's dad's death was Saturday so we had dinner with his mom to celebrate his life a bit. Sunday we did the bible study for steve's class tonight and I became angry and frustrated and cried when we got home (more on this too, maybe?)

Okay, the Lexapro worked incredibly well. I was never on more than I think 10 or 15 milligrams and had to go off of it when we started thinking about having kids again. It just helped. It wasn't like being on uppers or anything. It just smoothed out the rough edges, kept me from the hole more often than not. Allowed me to take a step back and really look at my pain and my sense of loss without being sucked into it. Allowed me a couple of good cleansing cries instead of the desperation cries of IT.

Shrinking. I enjoy this more than I thought. I think I have an unusual therapist, but mostly she validates my feelings and questions me when I'm being unreasonable. I take coffee and she shows up with coffee and we chat for an hour (an actual hour not a 50 minute hour, which is phenomenal) It allows me to say some of the nasty things I think about my marriage sometimes, even though most of it is irrational and she is quick to point that out. Mostly, it gives me one person who isn't trying to "fix" every little thing. Who doesn't have expectations of me getting back to my old self, because she doesn't know that person. She sees my sadness, my sense of loss and supports that. She recommends books and we work together to push forward. It really has helped some. I am still in pain, but I haven't been as desperate about it. I don't know how it helps, exactly, but it does and it takes the pressure off of Steve to be my ONLY support which eases the strain on our marriage.

Well, I thought I might get to more, but I'm out of time. I have to jump in the shower because today I have to meet my mother at the auto shop. Her car is giving her a fit and she needs to find out what is wrong because she has a trip my my grandmother and aunt this weekend (wish I could go)

Something to talk about later...Steve and I talked about the possibility of long term disability as an option to improve my quality of life. I've been having chest pain which I think might be pleurisy, but I'm not sure. I have an appointment with my GP and with the rheumatologist today (only my second visit with her) Also...Does any of your medicine make you mean? I feel just nasty sometimes. I'm trying to fight it, but I know that the words that come out of my mouth are some of the meanest, biting comments and I wasn't like this before.

Hope your having a good morning. Thank you for hanging in with me this week, sorry I was out of range...


10-16-2007, 10:56 AM
Hi AB...

Lovely to read you. How are you doing today? Sounds like you were doing 50/50. Is that a good thing or bad? I was just being silly when I said about typing to myself.

Mean? Medicine? Me? Oh, heavens yes. :bad-words: I feel quick to anger inside, but if I do let it escape usually it is a snip. Ultracet only or combined with the lack of a restful night of sleep. The two mixed is a g-r-r-rr-r moment waiting to happen. When I feel like an irritation mode is festering I go do something tedious. Usually bang on the PC or draw, paint, retouch photos, call my father, nephew, sis, brothers. It helps me to prevent an argument, or if in a snippy mood it keeps it from elevating into an argument, because I know in either case it isn't warranted. I'd say 95% of the time I am successful. If all attempts fail, I say I am not feeling well, I need to lay down and watch some mindless program or the Discovery Channel.

When not on pain killers do you think also maybe the nasty comes from Lupus, children, career, resentment or feeling like your needs, support are not being met from the spouse? That perhaps you want to say more, but like us all we don't want to say the forbidden things. Things a wife doesn't say to/about their husband. Feeling caged, wanting to run, feeling smothered, not being fulfilled as a individual? I do. Or wanting him to know exactly how you feel?

I hear you on sole support being our spouses. Me, we had marital woes before all this came to head, so for me IT is secondary. I wonder... is a wonderful husband a man who caters to his wife's every need without question? Should he put himself on the back burner? Or a man who knows when to step in and step out, and encourages his wife to be independent? To me, no, no, yes.

When I am not in maddening pain, my mind does alright. So maybe an anti-depressant isn't needed. My pain has been, well, barely anything recently except chest stabbing pain. What pauses in my thoughts now, has really nothing to do with Lupus but being 46, no eggs. I wanted children. I am getting that nesting feeling again, but this time of me not through an artificial process. Though I wouldn't mind that process, just not of late. Of me, is impossible. It has been a lapse of three months.

Are you on the brand or generic anti-malarial. Plaquenil. I was reading that people seems to have a better response with the brand name. And I was thinking is that why mine seem to had worked so fast. Especially on my joints. Remember I had commented on it months back. Amazed how it worked so quickly. Also on my diaper rash.

Do you get heat waves? Night sweats? Not like hot flashes when a woman is going through the pause stage. Menopause is just the upper face and neck that has a private summer. My entire body, I can feel all my pores opening up. On my shins, my forearms, face, legs..everywhere. And a dew covers me from head to toe. And when touched by air I get cold. Wondering is it a prescription or a combo of them...

And you know what else, my freakin' feet have been turning blue. Egads.

How was your appointment with your GR and R? Did they address your chest pains? Seems chest pains are running rampant amongst us. I have the same thing. I had three areas. Protonix took one part, a huge relief. But I have this gnawing pain left side and it goes toward my back side. I have a request for an x-ray but haven't stopped at the hospital to have it done. I had planned to go this afternoon, but the lack of sleep kept me here at home. Only two hours last night and they were both before midnight. Yes I have been buzzing about since about 11:45PM yesterday. Who or what put zip in my step. Dunno.

I misplaced my order for an X-ray. Located it, now today I am so exhausted, not from IT but haven't slept yesterday before midnight. I slept about 2 1/2 hours. Egads. Perhaps tomorrow I'll run to the hospital and get in line.

Have you obtained any books on IT? Do you do Halloween, candy for the treaters? Carve pumpkins? B is in Cleveland again. Fives day a week.

Happy Day,
Marijo Oluwa

10-16-2007, 11:30 AM
It is good to read you again. I was actually just checking to see if you were here, when there you are with an actual post! So happy to see it!

I think the anger thing is all of the above, spouse, children, IT, medications, frustration at work, not sleeping, etc.

I don't know what the perfect husband would be. I think I go for the last one in your list as well. I like my independence, need my alone time. My husband is mostly immediately responsive to my every need, but I don't want that most of the time. Do you know what I mean? I know that is confusing, but seriously...when I said could you stop on the way home and pick something up, I didn't mean come home right now because I need it. I know it is confusing for him, he just wants to help, but AAHHHHH!!!

The GP told me absolutely nothing. Really wasn't helpful at all. The Rheumatologist gave me lots of options including an acupuncturist's card and a medical neuromuscular massage therapist's number. I had never even heard of such a thing. She thinks much of my pain/sleeplessness, etc is FMS, not IT right now. For some reason this makes me feel more in control. So odd. I guess I've just lived with the FMS for so long that I think I can handle it better. It is so hard, though. Because I had FMS first, everything that doesn't show up on a blood test that is a symptom is automatically FMS instead of Lupus. I don't care as long as it gets better.

I have to run...


10-16-2007, 01:21 PM
Hey Ashley,

I hear you the husband thingy. Either too much or too little. I felt your AHHHHHHH. I feel that way too at times.

Mine evolved because I said he did very little, now it is I am coming, here I am. Let me carry you upstairs. Telly ringing every hour while in Cleveland..I just say thank you for calling, hey.. call me after you have enjoyed your dinner and are settled in for the night at the hotel and let him carry me upstairs. Indeed, feast or famine. I am hoping B will find his middle.

In a sense he is finding his way through Lupus too. Living it too. I can see it has been stressful on B and still is. Trying to be that thoughtful person. Trying not to expect too much of me. I think he is afraid I will leave so at times he does an overkill.

I also make sure I ask how he is doing, despite him being very closed about his feelings. Sometimes he shares. I've seem him let out a fury..not words..just a huge...growl....teeth clenched, eyes big and go into his office over something small..so I know he is under a tremendous amount of stress too and it wasn't because of the something small. Too much, too little...he is trying to find his middle. It is something he is new at. I understand his struggle...and I have to be patient with him..just as much as he has to be patient with me.

He can't make me well but together we can make the time more enjoyable, with patience, understanding and being understood. Rotten days will come, bad days too. I hope we can find our way not just through IT but also our martial woes.

Finding a balance even if today I am 20% or tomorrow 75%....sometimes it maybe 50/50...50% from each of us...B and Me.

10-17-2007, 04:48 AM
Good Morning!

I'm sure we will find it through our marital woes. I had my wrapper appointment yesterday and it really does seem to be helping. We are more responsive. We spent a long time talking about his needs emotionally and I think I have a clearer understanding. He has a very stressful couple of weeks starting today so I'm just going to be supportive!

I meant to mention yesterday that I do get the hot thing. I know I'm not having hot flashes, I'm just too young, but I feel hot all over. From my head to my toes. It seems to happen suddenly. I will be sitting and all of a sudden I feel like I need to step into a deep freeze. The thing is if I put something cool on my skin it feels like it is freezing, but I can still feel myself emanating heat. So bizarre.

I'm alone (more or less) at work today, so I"m hoping to get loads done. I have a presentation on Tuesday that I need to get some serious work done on...

Have a great morning!


10-17-2007, 06:56 AM
Yea, aren't those private spurts of summer (sweating) weird. No, it isn't menopause or peri-. Least I don't think it is either. That only involves the upper trunk, chest and head. I've had those. I think it is the Plaquenil. Since I have been paying attention to it...I dew up everywhere. Especially when frazzled too.

I had a list of many things I would like to do today, and I cut the list down by half so, by the end of the day I am not ragged and can enjoy another day, tomorrow. Try that today on that serious work load you have if you can.

My half list, get my X-ray, purchased paint for two more rooms and take the dog to the park, my exercise too for the day...and that's about it.

I feel when I give of myself, be it understanding, support, compliments, encouragment the reward is twice. Their responsiveness, feeling better about themselves, being understood, feeling loved can create even a greater day for us. A round of happy for everyone...cheers.

Enjoy your day, and what a lovely day it is out there...I just started mine, off to the hospital.
Marijo O.

10-18-2007, 05:11 AM
Good Morning!

Did you get by the hospital yesterday? I have my CT Scan read today at 10:00. They actually gave me a cd to take in to my doctor's office to be read, so I checked it out. Of course for the most part I don't know what I'm looking at, but my liver seems really small and my kidneys seem really close to my spine and my spleen is all speckled. :) It will be interesting to see what an actual doctor thinks. :wink:

Hope you are having a good morning. I'm still trucking along with my long to do list!


10-18-2007, 06:41 AM
Morning Ashley B,

Isn't it amazing to see your body on your PC. When I had my disk for my spine, head to toe, I was like that is me...different than seeing an X-ray hanging on a wall infront of a white lighted screen.

I hope the CT-Scan read divulge the secret. Wasn't there a dictated document in the packet from the Diagnostic Radiologist...

I did get my X-ray..result unknown when. I forgot to ask. Probably the usual, wait for the call if it is anything. Otherwise if no word by Tuesday I give my PCP a jingle juist to confirm it is indeed nothing was noted on the X-ray and what will be our next avenue in solving this mystery pain.

At this moment the pain is small potatoes...Oh, I have to remember to mention to him my blue feet. I am feeling realy really nice.

Slept well. Started this morning at 6AM with some low impact aerobics. More like dancing...and when they did the lunges I did movements from what I remember when I was so fit. Seems eons. Felt freeing..the body coming to life. I do enjoy yoga and pilates but moving without structure, to a beat is so much different. Hey , shake that body..woohoo. Dancing should be on the doctors orders for Lupus..any kind, Jazz, Ballet, Waltz, Two Step, Ballroom, Street.

Took pictures of the morning dew on my flowers, putzing about, tidying up...preping the walls for paint and after I post this I am going to hang some wood blinds that finally arrived. Custom takes forever...and I like them, can't wait to see what they will look like, three in a row.

Then later..gee so many items. I will choose wisely though...

As you can read..I am doing grand. I hope soon you can feel this way too. I pray, even for me, it will last..but I will enjoy it as it is given. In moderates amounts, reserving in hopes tomorrow just might be another great day.

Wishing all good things at your reading meet.
Marijo O.

10-18-2007, 08:49 AM
Hi! I'm so happy to read that you are feeling grand. I am sleepy, but otherwise I think I'm actually doing okay. I haven't had to take a pain killer in a number of days now so I really do think I'm doing better.

I'm very frustrated at work...being harassed and not knowing quite how to handle that. I seem a bit schizophrenic lately. I'm on the board in the morning complaining, then on at mid day in misery, then back before I leave work feeling better again. I'm all over the chart physically. I'm at work though and that is always a sign that I'm doing a bit better.

It is so funny lately I've been talking in such extremes. My husband pointed out that I've been saying "...in the history of time" a lot and since he pointed it out, I've said it about a million more times. (extreme again!) So this is the best conversation in the history of time, this is the slowest computer in the history of time, etc. I've begun to stop mid-history of time and changing my sentence end. This is the best cup of coffee in the entire state of north carolina, but of course it comes out, "in the hi-entire"

We've been laughing a lot lately. He is very stressed at work, but he is confiding in me about it again, which means the wrapper is working! Actually, I think he might be there now...hmmm should have paid more attention.

The rheumatologist suggested I try acupuncture so I have an appointment next week. We'll see how that goes!

I did go to the Urologist today and he says I'm all clear. Who knows what that actually means except that there doesn't seem to be any clear cause for my bizarre symptoms, however, it also means that kidney and bladder function are completely normal, which as I'm sure you know is a huge relief.

Okay, back to work...

Oh, wait, I lied. I wanted to ask about your blinds. I desperately need some custom blinds for my kitchen. I'm surprised to hear you say yours "arrived" today. Does that mean that they arrived at a store and someone is coming to install them, or does taht mean that you ordered them somewhere online by doing the measurements yourself? Do tell!


10-18-2007, 10:05 AM

Gosh those screws are hard to screw in. Taking another break.

Okay, I'm telling. Blinds. I guess the word custom is inappropriate. Made to order is what they say. Penneys 2" Basswood. I would rather not have to have them made to order, but our windows are such an odd size, so it seems. 34" x 70" . If already made, the sizes usually are 33, 35, 36..and no 34..why I wonder. And if you do come across a 34..only 64" in length. Egads.

I find it is more economical to do it myself then hire out. I just can not phantom spending over 10K for window dressings. This way when I change out I won't feel so guilty for wasting. Being married I now think about those things.

And if you need a coupon code I can find one. I am very thrifty at shopping on the Internet since being ill. Rarely do I pay for shipping. I work the numbers. Gives me something to do.

I was even thinking about ordering the JCP bamboo roman shades. Light, airy and not like a wall.

Acupuncture...I liked it. It worked well for my lumbar. She brought it to a tolerable pain level. Which is now superseded by Lupus and SS and it's cronies. So, the sciatic, the electric shocks are barely noticed. I have my days..but to me it is secondary to all this other crapolla. Check out the place before you go..so it will be a good experience for you. I also had cupping done and she also light the needles, with flame in some fashion.

Have you tried stopping your urine in mid stream regularly for exercise for your symptoms...?

My phrase lately has been...Ah, but then I really don't know anything or such is my life. Words of being nonchalant I guess. Oh and the word weird. With it drawn out on the Wee..e..e with lips puckered like Donald Trump's when he says huge.... That is what I feel I look like...without the comb over and the narcissism.

B hasn't been to his shrinker in a spell since traveling 5 days a week. He will be home for have the week during the week of Halloween. He like when we get dressed up for the treaters. I think this year I will paint a skelton look on our faces and drape ourselves in white shites. Something simple. I hope I have will power and don't go one candy for you, the treater and two for me. Maybe I need to buy some sour powdered worms and rolled fruit...yucka..but kids love it.

I've been on this PC so much lately. Probably because I am alone 5 days a week. Keeps me from nibbling. Waiting for more printer ink and photo paper in the mail, so I can print out more snaps. I go through it so fast. I make cards also. I would send you an invite to my online albums but it has to be through an email...if you want to see..send me a PM with it. Or I can send them as a download with your favorite colors of flowers.

I email this one woman in Denmark, who I met in this forum a few months ago. She is a delight and we share pictures often. She does the outdoor snapping like me...close ups, nature and etc. Denmark is beautiful. Reminds of the Midwest, the prairie states all rolled into one.

Breaks up..12 more to go.


10-18-2007, 10:21 AM
Your thriftiness is exactly why I was asking. Trust me, I do not want to have to have custom blinds, but we have the same problem in our kitchen. Two windows that are 32 inches wide!!! What the heck. We've had serious trouble finding blinds for them, so this is a great tip.

I have tried the mid stream pee thing and all my controls are working just fine. It is the feeling that I'm going to be incontinent, not that I have ever actually been incontinent! Isn't that weird?

Speaking of weird, I love your Donald Trump description. It was a perfect visual!

I'm pm'ing you my email address...My favorites are red and yellows and oranges and blues. I love them all, but the deep blues that look like purple and the daisy yellows make me the most happy :)


10-18-2007, 10:25 AM
The doctor's nurse just rang...nothing on the x-ray. Humnm. I asked her to have him call me. I have a gazillion questions running rampant in my mind now...Something is in there or it is a herniated disk. I don't think I am up to another back surgery if it is. Anterior, posterior entries..all frightening especially if it is the one I think it is...

Not to ruin my day though...I am off. See if I can get this last blind up. Fingers that look like a pack of hotdogs trying to screw in a tight spot is tough. Tata..Oluwa

10-18-2007, 10:30 AM
White sh--eet was replaced by *poop*..who drapes themselves in white *poop*. I said she-et. Good heavens.


10-18-2007, 10:41 AM
Maybe it is web slang for poop. I think that is hilarious. I started to point it out, but forgot...stoopid fog.

I've often considered writing in every curse word I could think of just to see what would replace it :)

10-18-2007, 11:46 AM
Hey I sent an invite.

Isn't it funny...poop for linen, she-et not sh-it.


10-18-2007, 11:53 AM
On the blinds..do you have a JCP catalog. If not go to www.jcpenney.com

If you see anything that my interests you, I may have the sale catalog and see what price we can get for you. Potential 20 -50% off..free shipping over xxx amount spent. I've gotten window covering for 60% off after crunching numbers. Simply crazy to pay full price. I would rather spent that savings on self indulging, trips...gifts.

If we didn't have neighbors I won't even cover them. I like the open feeling. We have a Gladys Kravitz on one side so we have been planting big trees on that side. It is really bad..because she has told me about the flowers I have in vases on my tables and etc. Makes me uncomfortable. Maybe we are their live reality fix for the week. Her husband...same, same.


10-18-2007, 12:16 PM
I do not have a jcpenny catalog, but I will check out the site you sent.

Your neighbor situation is so funny (not haha funny, funny sad :(). I have the same thing! She is not fun. Actually, since I told her that I've been sick, she has actually backed down a bit, but she still comes outside everytime I do and she always mows her grass as soon as ours has been mowed. She is quite the pill and almost drove me out of my house in the first year. I have stuck it out, but it has not been easy.

10-18-2007, 12:31 PM
Sent another invite.

Oh funny, we felt the same about the Kravitzs, us wanting to move. Mowing..same, same. Out when I was. Out when we are swimming. Mine is a drunk and talks like a sausage. She is a different bird.

It wouldn't have been so bad but they flipped their house..so many of their windows line up with ours..but on a angle since we are in a cul-de-sac and bit more back. Nothing that a few large Thuja and Magnolias won't cure.

I wouldn't have known but when she mentions things in my house she sees from peering in from the outside, makes me uneasy. I could see if they were an elderly couple..but they are in their late 40's.

I guess they don't know any better.


10-18-2007, 12:40 PM
Oh, my, they are young to be doing that!

Mine are definitely in their sixties and such busy bodies. Actually, just the woman. She planted a whole garden/seating area just outside of her kitchen on the side. Keep in mind that she did this even though she has an amazing deck and screened porch on the back. I've never EVER seen her use her back deck. Instead she uses the side garden which is in between our houses. She ALWAYS sees us pull up. It is just outside of my bedroom, so to be naughty we sometimes leave our bedroom window open, if you know what I mean :)

During the day, she crosses in front of my porch (where my kitchen windows are) to speak to the neighbor on the other side, that is when the peering begins.

It is so ridiculous.

I'm leaving for the day. I might check in tonight, or I might be asleep by 4:15. We'll see :)

10-18-2007, 01:40 PM
Wondering, maybe she enjoys listening to the naughty in her garden. Humm...maybe that keeps her coming out, ya think?

Enjoy your nap..

10-18-2007, 02:44 PM
No, she is old south nosey. I'm certain she is scandalized!

10-18-2007, 02:48 PM
I am trying to research more on this chest pain. Spoke with the doctor just now. He is going to schedule an ECHO and also an ultrasound of some sort for my blue feet..

Not pleurisy...nor does he think it is pericarditis..possible Costochondritis. I had that, this doesn't feel like it.

I am stilling feel great, even if this stabbing pain doesn't have a name yet..


10-23-2007, 10:34 AM
MO :)

I'm sorry I didn't get this on Thursday, or actually until today, because it is the first day I've been back on the site. Any new info? I thought they were so certain that the pain was pleurisy. This stinks, more waiting, wondering. Are you handling this okay?

You've been so much more upbeat in the last few months overall, I hate to see you back in pain.

I had an interesting few days. I came home Thursday and went to bed. I stayed home Friday and Saturday and Sunday trying to recover and ultimately felt better on Monday as always, but I decided to test out my life at home. I stayed home yesterday with some pain, though I felt better at the end of the day than I typically would if I were dragging myself to work and stressing all day about being to sick to focus.

Steve and I have talked about it extensively and I think I'm going to apply for short term disability with the state. This has the positive effect of allowing me to determine what my quality of life is like without the pressures of dragging myself in every single day and then spending my nights and weekends trying to recover enough to drag myself back to work.

The negatives are of course financial. I will have to pay for my own insurance which is outrageously expensive and my income will be nonexistent for the next 60 days. After that if I'm approved, it will be 50% of my current income for up to one year. I have all kinds of mixed emotions about this. I've been crying a lot because I feel worthless and then optimistic that I might actually be able to get this pain under control then nervous that my doctor won't fill out all of the paper work and that I won't get approved. It is a lot to deal with. I have my wrapper appointment this afternoon, so I'll have a chance to talk to her about it some as well...

It is just very stressful.


10-23-2007, 01:28 PM
Hey AB,

That is a bigload to tow, heavy on the mind, finances. I don't have any experience with disability process except what I mentioned many, many posts back.

I think it is a great idea, to see what life, your health will be like not working. I believe it can only get better...and when we work on our cognitive behaviors it can increase our wellness, eh.

It does get a a tiny bit stressful filling a day, maintaining some sort or normal routine while not working. Being near to family and friends I was more successful at it. As of of late I fair.

When speaking with your doctor don't waiver in your explanation of your pain. Be direct, be specific and ensure all doctors are very descriptive and not general in your current state of health on paper. My sister is very ill with diabetes, neuropathy, cellulitis and heart problems and guess what they approved her disability on after it was denied. Bi-polar. And I don't think she is bi-polar, but they diagnose her as such and she is receiving benefits. Crazy. She was a RN, private care. Oh, she also used a lawyer.

Blinds..JCP is having a sale. Also Plow and Hearth has your size window.

Did you get all three of my photo invites?

No, I am feeling fine as a whole. Just a bit of nausea and headache today. Flat. Blank like a slateboard. The chest pain, I've had that for many, many months. It became secondary when all the other pain surfaced. Now that I nipped those in the bud for the time being..it is time to contend with the original again. Yesterday humm was it, it felt alright...but now it comes in waves. Alleviated by movement or rest.

Very fatigued as well today, more than my normal. But I feel IT is taking a back seat and not being a backseat driver today. In my face. I am navigating about nicely without him nagging me...

My Echo is scheduled for November 7. Do you get blue feet? I have for quite a long time, but I always forgot to mention it. Except once, when I did with my ..er..ah rheumatologist, he just uttered are they cold? Nope...and that was it. But lately they are more blue than not. Especially while sitting and standing and they are not cold. Poor oxygen, ya think? They are going to do a AVI??? Ultrasound on my feet on the 7th too.

I also called the doctor, after being indecisive about the anti-depressants, Lexapro vs Cymbalta they seem to have the same affect, side effects. One can find an article to rave about the other over the next. I was thinking egads more night sweats...ewwwwww. I have been feeling like I was flushed many times throughout the night lately. PJs so wet and wrinkled. Hair stringy. Bed wrinkles on my skin...Gosh, I look horrid when I wake up these days.

One night I was so dehydrated from perspiring I began to have spasms in my scaitic leg. And we know those aren't pretty. I felt more alien like than human. And no one to rub or squeeze them out. And my food. Not digesting..TMI..but how it looked going in..looks pretty much the same when leaving me. Wondering if it is Protonix. I will have to add that to my Guess What It Is List.

Oh, I decided Cymbalta. Doctor is calling my prescription in probably at 5 or 6PM. I am depressed. I can still laugh, smile...joke...take things serious, move, find good, enjoy earth...but yet in the dark,, as I round the stairs, open the door, enter my attic, walked to the center, no sun, no light I feel bleak. Is that weird? Am I weird? I feel if a light went through my core from top of my end downward...it would be absorbed into the darkness. It is just too weird. I feel alive, appreciative of life, believe in Him, feel what I say, feel joy then there is this place, where I float to, no gravity, no feelings. No feelings..humm..nope that isn't it...actually I feel fear. I am afraid it is going to pull me in. Like today, like now. Egads.

Oh, I think a shower is what I need to wash this icky feeling...

Enjoy your evening. And worry not about your finances...when not working you save too....if you drive, saves gas, dining lunches out, wardrobe maintenance and etc. It is nontaxable income...You guys will find a way to manage. Just feel good you are taking conrol over IT before it takes total control with stressing. So, stop stressing, girl.

Marijo O

10-24-2007, 03:03 PM
Hey you, AB..

I popped my first Cymbalta...rolling my knuckles on the table waiting. Do I feel different... :shock:

Oh, I know it doesn't work that fast. Maybe it will get rid of this recent twitch of my eyelid I just picked up.

Just making a pit stop...hope all is well up north.

Thinking of you,

10-28-2007, 01:10 PM
Hi...long time no type. I'm sorry I've been so self absorbed lately. I read your last two posts today and felt that I haven't been very attentive lately. I'm worried about your blue feet. I do not get that with my feet. I get it with my hands occasionally, but not with my feet. Does this coincide with any numbness or tingling?

I'll be praying for you and the stress of the ECHO and AVI. I know that these are good things. I felt that way ultimately about the cystoscopy a few weeks back. It is one more test for clues. I hope everything comes out positively (that is that all tests are negative!) I know this is sometimes frustrating (again like the cystoscopy), but ultimately I think it is better for them to find nothing on tests like ECHOs. I want you to pass it with flying colors. There are so many oddities that come along with IT and FMS.

For instance, my skin is killing me today. Just my upper body, but still...such a strange symptom that no one seems to be able to solve. I can't find anything serious. Tell me again, why did they rule out pleurisy with your chest pain? Describe the pain for me in detail...

I have to say, I didn't want to push, but I'll be interested to see if the cymbalta helps in other ways. It is something I am still considering, but of course they don't want me taking anything if we are going to get pregnant, which is still a big if.

I'm not going to say much more about me, but I wanted to keep you in the loop. We've decided to wait a bit longer on the disability. I think it is the best decision...for many reasons. I had a big discussion with my boss Friday and I'm likely going to file a complaint with our HR department this week and speak to an attorney. Just as a frame of reference. Steve and I decided on Wednesday that we were going to see how things went at work with IT until the new year so my conversation with my boss did NOT influence that decision. I'm also looking for a new job.

I do hope the cymbalta helps. I think it will and you might already be feeling the effects. Let me know how that goes.

I only received two of your photo invitations. I still have to put together a photo album for you and send you the link.

Write when you can. I'm always thinking about you.


10-30-2007, 05:48 PM
Hey, I'm just checking in. You doing okay?


11-01-2007, 10:42 AM
Haven't heard from you in a week. If I don't hear anything, I'm going to call you tomorrow. I really hope the cymbalta has you dancing the tango...


(As always, I'm praying that you have relief not grief...)

11-01-2007, 01:59 PM
I sent Oluwa a persona e-mail just to see if she was ok. Hopefully, we will here from her soon!

Peace and Blessings

11-04-2007, 03:19 PM
WeHaveLupus Friends -

I heard from Oluwa this morning and she has been ill, but is doing much better. She had to go into the hospital for a few days, but is home and resting now and is doing much better. She has her sister and her kids coming for a bit, so it will likely be a couple of weeks before she makes it back to the boards.

I know she will be missed while she is away. As always, your thoughts and prayers are appreciated.


11-04-2007, 03:57 PM
I'm glad that she is feeling better and I hope that this flare did not take too much out of her. We will continue to keep her in our thoughts and prayers and will wait until she feels well enough to join us again.
Thank you for keeping in touch with her and for letting us know how she is doing. :lol:

Peace and Blessings