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Thread: I go something like this.....

  1. #11
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    Oluwa -

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

  2. #12
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    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,
    Oluwa

  3. #13
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    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.

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

  4. #14
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    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,
    Oluwa

  5. #15
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    AB,

    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,
    Oluwa

  6. #16
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    Oluwa,

    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

  7. #17
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    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,
    Oluwa

  8. #18
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    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?

    Ashley

    (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.)

  9. #19
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    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,
    Oluwa

  10. #20
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    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.

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