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

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06-17-2008, 08:01 PM
Hey Oluwa. Asked dentist about combining, nope. They do it in 4's. No measures were taken, will do when numbed. Said would hurt, so might as well wait until numbed up. Everyone is scaring me, everytime I mention the "deep clean" ouch :shock: is what I get. Antibiotics may be needed, the price was already figured in. Fun, fun.

I have sub-trops and reg-trops. I live in north-central FL. It can handle both. My favs are my ginger plants and pine-cone lillies. Glad to hear that your feeling great. I'll retype the pm. I'll save it this time just in case :) .

06-17-2008, 08:06 PM
OK, how do you send a new personal message :? ? I've only done it by reply.

06-17-2008, 08:14 PM
CV...My husband is very tender when it comes to pain...so I am sure you can handle it if he could...so don't be scared. You will do just fine...

It is deep root cleaning, past the gum line till they find no more plaque build up...so the gums get tender. Afterwards my husband had to rinse with salt water for days..to a week I think. I bought him a box of salt and a roll of little Dixie paper cups for his bathroom...

You can start toughening up your gums by flossing after each meal now..and rinsing with salt water. They may bleed...do they bleed now when you brush?

Sub tropics and tropics are annuals here...except some palm types. My hybrid hibiscus are in pots. I bring them in during the winter...

Gee, I was heading to the sack awhile ago and just got lost on the way...and found myself back here. Now I am on my way..

Night, night...

06-17-2008, 08:43 PM
Night :angel:

06-18-2008, 08:34 AM
Hey girls,
I hope Im not butting in....Everytime I read about the teeth thing my stomach drops. I have always been SOOO meticulous when it comes to my teeth. :D I think I was one of the 1st to have their teeth bleached in Boston several years ago lol! Anyway, I participated in a trial screening at Tufts Dental School (you let them look at your teeth and they pay you - teaching hospital). Anyway, the professor said, "So...you have lupus or Sjorgrens Syndrome?" (Do you know how many docs say that to me when they first meet me or my labs??) Anyway, I say "Why?" And he tells me that my mouth is showing signs of new decay that happens due to autoimmune. He checked my saliva glands, etc. He gave me a letter to give to my regular dentist. A couple weeks ago - during a harsh flare - my front tooth, lower corner, BROKE off! :shock: I was eating toast w/ butter! I was a basket case. I have always taken such good care of my teeth, and now this. I HAVE to make a dentist appt TODAY! (Denial is not just a river in Egypt). MAybe they can stop the progression? Very sad :cry:

06-18-2008, 08:41 AM
Butts are not minded at all, besides we don't feel you are...Lauri...

I have SS too.. my front teeth chip very little, more like a shaving, a filing if you will...not really noticeable but I do notice, but not uncomfortable with it. One of them are capped from a childhood injury...

I am going to have it recapped this year and have the other installed with a veneer...

Do you think the bleaching weakened your teeth? I use whitening tooth paste once a week no more than twice...

Maybe rinse with fluoride mouth wash after each brushing..

Keep well...

06-18-2008, 08:43 AM
click on you have no new messages.
click new post.
enter Oluwa as user name...
a subject must be enter too..
type to me and send...


06-18-2008, 11:48 AM
Hi Oluwa -
Yes, the bleaching made the already weakened enamel even weaker. Im so bummed because I really LOVE white teeth!! Like SuperWhite! :D But, Id rather have SEMI-white teeth than NO teeth :shock: lol. I also use Plackers - I LOVE those!!! I actually love to floss my teeth, and i love to go to the dentist!! Obvioulsly, a little obsession of mine - Ive had worse obsessions - believe me lol :wink: .
So, no more bleaching for me - just have to take EXTRA good care of my chompers, and I guess there is some rinse that the dentist can perscribe that takes place of the lack of saliva in the mouth. SS really stinks, as you know. My eyes burn like heck, and feel gritty alot - I cant stand that!! Im going to ask the new doc for those drops - Restasis? I forget. How do you handle the dryyyy eyes?
PS - Also, I often have this AWFUL taste in my mouth - almost like metal. Is that a symptom as well? Gosh, I really hate it - and when I have mouth sores on top of it - uughhh!

06-18-2008, 12:11 PM

I use OTC eyes drops when they feel like potato chips..Refresh Eyes and prescription saliva Aquoral for the mouth when I have no alternative with me....

Rarely wear my contact lenses anymore...wear sunglasses while on the PC. I wash my make up off prior to bed..if not my eyes are like pie crusts...

Usually for my dry mouth, I nurse water with lemon, sugar free lemon drops, sugar free Ricola drops...sugar free gum..not the mint flavor, the passion fruits and etc types...

I do the Plackers too...I buy up all the bags when I see them, a hard find this side of the Mississippi...

I think my teeth filed a bit in the front is more to do with having an ED..eating disorder. I forced puked and starved, controlling perfection.

Metal, I've licked a few batteries and suck a few coin in my childhood days. I've had strange taste in my mouth but not like a coin, gum wrapper or battery.

Enjoy the day..I am. Life is good.

06-18-2008, 12:29 PM
Thanks Oluwa -
Potato chips - aahh - your analogies always make me smile... :D

I am glad you are enjoying the day...Me too. I just made a nice tomato, basil and fresh mozzerella salad with a TOUCH of balsamic vinegar
uummmm....nice and cold and refreshing...and water and fresh lemon coming up - now, thats a nice treat.
Hope your day continues to get better and better

Love to all -

06-18-2008, 01:01 PM

Hey you..whacha doing...How goes the day? Beautiful up here...swam...cool breeze in the air, no humidity...I am enjoying it. Wish my husband was here enjoying it too.

When all is good, I am feeling I want to share it, share me..

Hope living good is your feeling today too...


06-18-2008, 07:28 PM
Hi Oluwa, bad weather and bad day. Joints, tummy, sharp stabbing pains. Just ill feeling. So tired. Eyes dry too like you and Lauri. Funny, I seem to often have a light metalic taste as well. Talk more tomorrow maybe :) .

06-19-2008, 08:51 AM
I think sometimes that taste is from the sores in my mouth...yuck. im sorry youre having a tough day. I hope you get the rest and relief you need. Prayers and warm thoughts coming your way...

06-19-2008, 09:29 AM
Thanks Lauri. The taste in my mouth comes and goes with or without mouth sores. Have you ever been to tired to talk? Its been that way for me a few days. Typing is to tiring right now too, sorry. Try again tonight :) .

06-19-2008, 11:19 AM
Hey Cheryl...

How are things this day....

Have you tried a long soak, or a long warm shower for your aches...with GERDIE you need food in the belly, girl. Hope you are drinking more than soy milk...

I was thinking about the metallic taste you are having earlier, maybe it is from periodontal disease. Basically it is an infection of the gums. I think you have this is because that is usually why they do the quad deep cleaning. Metallic taste is a symptom of periodontal disease...

Have you tried to rinse your mouth with warm salt water for temporary relief? And perhaps use a mouth wash that kills bacteria if are not using one already...

Maybe it will help you feel a bit better till you get to your appointment...

Be well I pray, Cheryl...rest, eat...


06-19-2008, 11:57 AM
Hi Oluwa, thanks for your concern. What's GERDIE :? ? Been eating a little here and there :) . I think its weather causing problems.

06-19-2008, 12:23 PM
Oh..for some reason Cheryl I thought you had GERD..Gastro Esophagus Reflux Disease like me.....

I just finished with my swim...a lovely breezy cloudy day....


06-19-2008, 01:25 PM
Nope, just border-line ulcers from too many years of antiflammitories. Swimming does feel good, doesn't it? I feel like a ton of bricks, body doesn't want to move much and arms are heavy. I think I might try the pool myself. My period is already over. 4 days, not bad. I like the short ones. Going to take a vitamin before bed to see if that helps for tomorrow.

06-20-2008, 09:12 AM

Did the pool dip and vitamin help...

Are you taking anything to control the acid output in your stomach? Like a pump inhibitor, Protonix so it can heal?

Have you been tested for H. Pylori?

Looks like a storm is on it's way, did it just leave your place...


06-20-2008, 10:12 AM
Hi Oluwa, no storm here. I don't take anything for tummy. I just switched OTC to tylenol arthritis, that way no tummy trouble. Forgot vit. and pool. Took kids for a walk last night, twice. Slow at first, but got better and easier 2nd time :) . Rested all evening in hubby's recliner. Its so huge, it makes mine look like for kiddies'. He's 6'3" and his feet don't touch the ground, about 4" from floor. He got it as a gift from his mum for putting in the hard floor throughout her house a couple years ago. Everyone loves a chance to sit in it :) .

Todays better, slept until 10am, all kids slept in (walk did them good too :D ). Even the day-care kid slept in, said he was up late too. Haven't slept in past 8am in years. Felt good, even though morning about gone for cleaning. Oh well, had kids help so they could play game systems. Still so extremely tired, haven't been this tired before. Different, limbs are bogged feeling and tingly. Feel so heavy, but lost few more pounds (8 total in 2wks). The word you use, sluggish I think, seems to describe it some. So irritable, have to catch myself before I yell or cry. Kids think I've lost my mind, heard them say I was wierd and crazy :lol: . Gotta love them, better than saying I'm mean or something. Sorry I haven't chatted much last few days with you or anyone. Just never felt so tired that even talking, much less typing, was hard to do. I feel a little better, hoping each day to get some of the energy back :) . Thanks for understanding and being patient.

How has your days been? Good I hope :D .

06-22-2008, 03:14 AM
Cheryl, I'm sorry you're 'bogged down' by fatigue and pain. We've all been there. Just takes the wind right out of your sails, doesn't it?

A cool swim; good sleep; a gentle walk - all good things. Eat healthy - make every meal count....good things for your body. Let your joints take a little vacation. These things pass....we know that. Some just take a bit longer....

Sending you only good thoughts, Cheryl.....and {{{{{hugs}}}}


06-22-2008, 06:29 AM
Thanks Jody, your sweet. Hugs back :D .

06-22-2008, 07:06 PM
Hi Oluwa, thinking of you and wondering how your weekend went :D .

06-24-2008, 07:17 AM
Here I am...wonder no more. And how are you, Cheryl?

I had a great weekend...and then some. It stormed and stormed and stormed some more here...cooling the heated rural town, flower town off.

We stood at the curb waiting for the light, I watched as the rain filled the drains. Plant debris, untethered insects went too. Gulp, gulp as the drain took a drink. They fought the waves...just streams, rainfall to me... a tsunami to the insects.

Had my spine appointment yesterday. Here I was concerned about my middle back and lumbar. He believes it is my cervical spine that is the imposing on my life with pain problems. The x-ray of my middle back which showed a partial cervical spine gave the willies..straight, no longer a natural curve. That is the culprit he believes. He doesn't believe my herniations are involved with my pain...not impeding. Today I am schedule for an MRI at 1PM....

He feels the previous cervical fusion is creating instability, pressure overload in my top of middle spine. I guess I never recovered from the surgery properly..hummm...

My neck and top of my back looked like an L and not a flowing natural S like...it did look gross...

Maybe therapy can resolve it. The doctor didn't discussed prognosis, corrective measures... till he he can make a clear diagnose. Which wil probablby be some recommendation by Friday...

After thinking about how I hold my neck and shoulder, my spine alignment it makes sense. I can see I am trying to ease the load on C-7 - T-1 area...

So, this is where I am at..still enjoying my good feelings IT is allowing me to have. Oh, how generous IT has been, or should I say selfish in.. not sharing IT's miserable existence with me in full form..

Life is good, hope it is for you....
A late breakfast and a shower and I am off...

Enjoy the day..and hope all pain, ouches, ickies are mild or gone today...
Keep well..I know you have been having a rough time, I hope IT lets you come out and play...


06-24-2008, 09:45 AM
Hi Oluwa, good to hear from you. I forgot hubby was to to come home, then remembered and figured off together enjoying the time you have. Hope you app. goes well today.

Sorry the back is doing so badly. Staight, wow. I hope a fusion is not in store for you. At least you know and have an answer for a lot of the pain. Now maybe things can be done to help.
Here is better, lots of storms too. It has helped the heat as well. My rain barrels are full again, yeah. Pain and fatigued have lightened up a lot. Realized my mood has gotten better as well. I forget how much pain can affect your mood, dumb I know. My left foot pain is still there. Curious as to what the x-ray will show, tons of arthritis? Count down to first deep clean, a little nervous.

Hope everything is well for all :D .

06-26-2008, 12:40 PM
Ouch, Oluwa! An "L" shaped spine at the top? That can't be good. Cervical problems would certainly account for all of the pain you've been having. I wonder what they will do to help you? I had a car accident many years ago and had some bulging discs in the cervical area - so painful - and I'm sure it was just a small 'twinge' compared to what you've been through. I'm sending gentle hugs to you, Oluwa.

I am glad to hear IT is leaving you alone....giving you a chance to enjoy life a bit. I hope IT takes a long vacation!


06-27-2008, 07:03 AM
I go something like this...

Not all somethings are bad somethings...

I am happy.

I feel whole...okay, maybe a nut and bolt are still missing.

Swimming has done so much wonders for my well being. For me. Something click within me, when Saysusie wrote this to me...

From the first morning stretch when you realize, "Oh..that did no cause me pain!". To the second when you feet touch the floor and you turn to look out of your window to see another beautiful day. You sit on the edge of your bed and take slow, deep, cleansing breathes, breathing in the knowledge that this is, indeed, going to be a good day.

From the soft warm water of your shower as it runs down your body, each ringlet of water bringing you renewed strength. After your shower, you lather yourself with emollients laden with sunscreen, of course, and cloth yourself in your favorite comfortable clothing. You are now prepared to take all that this wonderful day is going to offer you.

Shall you take a walk? Why not? It is a beautiful day and you are a part of it. Perhaps you will take a brief moment to be that island again, slip into the water for a short time...slip in, then slip out armed with the, "I DID IT" attitude. Go back to your place of safety and comfort and enjoy the peacefulness. Take a moment to give thanks for this beautiful day that you are a part of and that you were able to participate in!
Now, make your plans for the rest of your day and remember, it is a good day!

I have always said the answer, the word, the moment when it will all click is out there. In a person, in a book, in a scene. Saysusie was that person, the voice for me... to live in the moment. I knew the moment, when change occurs, but I forgot to live in thee moment. I was trying to live too big, in thee whole day. I needed smaller increments, for me...a moment is all I need to live by.

Finding my calm, finding where the no stress feeling left off and stress feeling began has been a tremendous change in my mind too. When I found that moment I am able to put things into perspective. The moment when I went from skipping alone to being irked and irritated. Or going from eating healthy to baam, irritated, binge mode. There is the moment, define it and it will help with managing your stress..

The old words of wisdom. Accept the things I can not change...and change those that I can....something like that, eh...

I must say IT has been almost too kind to me. Even though IT has betrayed my trust many times, IT has never scarred me with pessimism and cynicism...even hough I've fallen in, balanced on the edge of the hole, the stupid hole many times and I am sure I will fall in again. And you know, I still come out okay...unscathed mentally.

MRI results in...no pinched nerve, my herniations do not require surgery....inflammation, fluid buildup. Muscles, tendons too tight, too hard and too short from contorting like a a rewound piece of copper wire.... Prescribing Medrol Pack, scaryroids..oh no the puffer face, and physical therapy. Gosh, I can't wait to rid myself of snap, crackle and pop and the burning. No more pain is one the way...gawd, I can't wait.

Tummy, spine...Two down, one more to go. The girlie next... Knock 'em out one by one.

Help is on the way...help is on the way...I am very grateful.

This is me today... Excited, just a feel good allover, so good it supersedes the back pain..mild joint pain...and a bit of Darvocet will do ya....zooom....

It's Friday..enjoy. I am.

P.S. Thank you again Saysusie, for just being you..kind.

06-27-2008, 12:18 PM
Oh, Oluwa...what a wonderful post! You've had an epiphany and it took you to a wonderful new place....it was so kind of you to share that with all of us. Inspiring; hopeful; and very visual. (And, Saysusie...thanks for being the inspiration!)

Good news about your MRI results. A short course of scaryoids isn't so bad - puffer face doesn't really have a chance to get settled in. So nice to know that hope and relief is around the corner.

Keep telling us all the good news.....I'm smiling as I type! ('course, you KNOW you can share bad news too.....but I hope there isn't any of that for a long while!)


06-28-2008, 06:46 AM
Jody...I am in a wonderful place...like a kaleidescope a small turn changes the whole picture. Envision the turn and see the colors grow, light to bright...as the light is let in.

Feeling good mentally does change the pain. I always said pain changes the mind, but it can work in the reverse too...

I am smilin' too..

I wish I could make you tummy feel like I do..great..

Happy Saturday..

06-28-2008, 06:51 AM

How are you today..how was your 3PM dentist appointment. Jaw?

I hope it all went really well, no flairing without stilettos and your pocket numbers were low...

I hope you got my PM before you left and were able to find a place in your mind to relax...

Head hugs,

06-28-2008, 04:51 PM
Hi all, app. went well. Thanks Oluwa for the pm, I was checking my e-mail before I left. Was trying to stay busy until time to go, so nervous. It was what I needed.

They did a root canal, temp crown, extraction of broken tooth, and impressions for temp cover. The only pain that was almost unbearable was the needle in top off my mouth. That and the cost :lol: , $2,200 for the day :shock: !! They are making me a top clear mold (looks like invisiline) with a fake tooth that I can slide on when around people. Its for me to wear until they put a bridge in. I take it off when I eat. I told them of my jaw problem, so no clamps. Had me motion when needed to rest my jaw, waited until I was ready again. Even gave a blanket when I got cold. These people are sooo nice :D , and dentist ssooo gorgeous. Oh yeah Oluwa, took your advice and nagged for the deep clean to be done in halves instead of quads. Told them I'd rather have 2wks of a little more pain than expected, than 4wks of some pain. They said yes!! Thanks for the idea, its a big relief. They also kept complimenting my eyes (1 lt blue/ 1lt green and brown), said they are looking forward to making my face even more pretty. Talk about people trying to boost your self-esteem and put you at ease. Also one of the nurses lives near me, took some of my business cards to pass around. Told her that'll help, thanks. These people are almost to good to be true :shock: .

Guess what!! My mum-in-law told hubby to come by on weekends, she will pay him for work. She said she'll pay on my dental bill each time he does work. Said she's so happy that I did go, that she wants to help pay!! That also relieves stress from dentist. Wow, I gave her a hug and told her how greatful I was. She took us out to lunch. Since I could only eat soft food, I got to pick. She got more patients, so said had the money to help.

Sorry I haven't been helpful much to anyone. Everyone is so great and understanding. Glad you found your click Oluwa, couldn't happen to a nicer gal :D . Looking forward to chatting more later.

06-29-2008, 12:50 AM
Aw, Cheryl, that is all such good news! Sounds like it couldn't have gone much better! And, God bless your mother-in-law for her help. That's just was you needed to hear, isn't it? I just know you're going to be so glad you did this. It's a lot to get through, but feeling good about how you look is NOT just vanity - it really makes a big difference in your level of confidence. And a gorgeous dentist to boot! Nothing like a little eye candy to get you through some discomfort, huh? :wink: Hope it continues to go well, Cheryl.


06-29-2008, 04:56 AM
Head hug...Don't be silly, you are helpful, even when you feel you aren't, Cheryl. You ask questions when not feeling well, which someone can relate to and not feel alone. Indirectly and directly, you are there for us too. It is okay to lean..be carried...it makes us feel good that we help with words, we are family, we are friends.

Relationships are give and take...relationship are based on months, weeks, or conversations..not just what you can do for us today...we know you care. So, take your sorry back.

That is great that you were able to combine the quads. Get it over and done with...pain okay today?

Your eyes do sound beautiful...sounds mysterious, intriguing beautiful. My Pookie Monster has one blue and one green. Me, two hazel green with a smudge of brown with a bit of blood shot.

That is so wonderful your Mum-in-law is there for you...your family. My heart and my lips smiled when I read that...good things...great things..kind things. I feel good inside when I see others give to someone. Share when they are blessed.

You deserve to have people that are good in your life. There are a lot of wonderful people...truthful in goodness in the world, I pray many more cross your path.

Cheers to mashed baked potatoes loaded and strawberry shakes...can't get any more comforting when the mouth hurts.

Massge the gums...

It is Sunday, Happy Day...

06-29-2008, 08:48 AM
Thanks gals for your kind words. Pain is not to bad, tummy all quezzy though. Went to bed feeling as if need to throw up. Still that way. To top it off, lil miss woke up last night 10pm. Stayed up till 3am, then woke at 8am. I'm so tired, waiting for her to take a nap. Figures, my boys stayed with mum-in-law for night. Thought I had a break, oh well. Just laying around, checking in on evryone and reading these post.

How's everyone day going? Love to hear from you, takes my mind off things.

06-29-2008, 09:40 AM
Hi Cheryl -
Wow, memories of babies waking up all night...dont miss that!! My son did not sleep through the night the whole first year...uugghh. My poor hubby used to go to work an hour early (4AM) to take a nap before work!! We figured out that it was partly due to all the steroids I was given during pregnancy...kinda messed him up with candida and bad belly. But after that 1st year - he's been nothing but a joy!!
I, too, have not slept through the night since being on the prednisone. Im not having the awful nightmares anymore, but I wake up all night long. Today I slept until 11:30 AM!! Didnt feel that good, though, feel really puffy again, and REALLY sore. Im waiting for my morning Exedrin to kick in...3 every morning usually gets me mobile and a little less fuzzy. One bummer to sleeping late: didnt take my prednisone until now, which means Ill be WIRED even later!! :shock: That smiley face is EXACTLY what I look like on 'roids! lol
I hope you get a nap with the baby today..otherwise you'll be a zobie by supper time! Have a good day!

06-29-2008, 12:15 PM
Hi Lauri, got my nap. Haven't had one in years. Lil miss will be 2yrs old in little over a week. Didn't take meds with her, have no idea why she still gets up. She keeps a good sleep pattern, but still gets up almost every night. Once in a while she does this, its rough. Have no idea why so ill feel. Did get to eat a little today, soothed tummy some. I sleep thru the night, just hard to fall asleep. Then feel like I got ran over by a mac truck when I get up, feeling worse than went to bed. Never do feel rested.

Did it feel good to sleep in? I got to do that once last week until 10am, felt nice but half morning gone :lol: . Have a good day.

06-30-2008, 05:14 AM
Me, I slept long and hard yesterday, during my nap after being awake for about 33 hours. Then out again at 1-PM and finally woke an hour ago. Clocking them in...wish you could have nights like that Cheryl...

How did you and Lil Miss do last night...?

Maybe you need to take an OTC for your stomach. Have you been into see you primary lately for your stomach troubles? Maybe get a bit of plain vanilla ice cream or soda crackers. Having an ulcer, you need to keep food in there...

Maybe this might work to keep the acid production done, sip through a straw two tablespoons of olive oil to coat if you don't want to take any drugs yet.

Did they give you antibiotics from the dentist? Taking them on an empty stomach hurts it...

Tossing a few ideas out there..

Other than sleepless and then sleeping forever I am doing quite well. Seems odd to be in this place of normalcy.

Joints feel wonderful from the scaryroid pack, a bonus. It is a seven dayer not the five day I mentioned before....My first PT is July 2....1:30PM. My back is on the way to feeling better..jazzed I am. It is already feeling better.. No injection, no surgery...I am elated about this is...

My mind keeps going between gosh, these scaryroid make a world of difference I forgot how much as it has been over a year since I was weaned...wondering should I askl for more..or fear the long term affects and deal with it. Perhaps looking to far ahead and the PT and this quickie pack will make the difference in my world...be clean, stay clear...

Today is a gorgeous day, starting..after all the rain in Spain days we have been having...you too? I am still buying plants...I have 10 to plant today. Tassel ferns, annual daisy types, grasses...too many beds and we are only about half done. I am still learning what lives and dies in the winter here...

I've had to change my garden vision so many times...too hot or too cold, I need to find plants that will survive both seasons...what is perinnuals in the PNW are annuals here..ugh..and pretty much the same zone, just not planting zone, but definitely not the heat zone...

Stopped canvas painting for a bit, the arms raise was aggravating the neck and middle back...maybe after PT is over...

So, whacha doing for the 4th?

Wishing you wellness, Cherly..hugs.

06-30-2008, 07:36 AM
Hey Cheryl
Glad you got the nappie!! (Thats what we still call it here - lol). I have an INCREDIBLY hard time falling asleep. What I use when its real bad is Benedryl. It is very safe and thats what theyll try first in the hospital. I have to be very careful what I take as I developed a problem with pain pills years ago, so Im very careful. But Benedryl is safe according to docs, etc. For me, it gives me that relaxed feeling that leads me to fall asleep. When Im in a flare, I can sleep for DAYS and I dont feel rested - its HORRIBLE!!! I feel like Im hungover (and I dont drink!!). Are you in a flare right now? Thats when I never feel rested. Thats when I usually get the "business" from my mom "Didnt you just TAKE a nap" lol...Someday shell get it I guess.
Anyway, hope you were able to sleep last night..you and the little one..

06-30-2008, 07:49 AM
Hi Oluwa, me and lil miss slept all night. One of her rare and fews :D . Dentist gave no meds yet. Said antibiotics probably after first deep clean. I think tummy ill from fluids that slip down throat during dentist visit. No guard because jaw and fragile front teeth. They did good at keeping rinsed, but some slipped anyways. I did forget to pick up acid reducers for tummy, thinks for reminding me. Going to the store today, I'll grab some.

We've had lots of rain here too, love it. My plants are doing great. My pine-cone lillies and ginger have gotten so tall these last few weeks.

I'm glad meds are working good for you. Feels good to feel normal I bet. Glad the back an be taken care of with no surgery, was worried for a sec on that. Well off to shop, chat later :D .

07-01-2008, 12:00 AM
My night for insomnia...........Zzzzzzzzzzzz OOOOOOOOOOoooooo :shock:

07-01-2008, 06:36 AM
Poor Oluwa, sorry you couldn't sleep. Was it pain, or from 33hrs of sleep? Maybe body got its sleep cycle off track. Take it easy, hope you get some sleep. Check on you in a little while :D .

07-02-2008, 04:45 AM
Did you remember you tummy antacids...

No pain, Cheryl..scaryroids are working like a charm on my IT spots. Spine still in pain though.

I think the roids are keeping me wired, then I pass out from no sleep. Like last night out but 8PM....10 hours later...ahhhhhhhh.

I need my PT but they just called to rescheduled. Emergency surgery..hummm..emergency 4th of July? Rescheduled for Monday. Maybe I'll scout the yellow pages for another...g-g-gg-gr-r-r-r-r.

Despite my pain in the spine, which Darvocet helps with...my body feels wonderful, almost scary wonderful to make me consider steroids as a daily regime again because I have absolutely no feet, no shoulder, no finger, wrist, hand pain. Feels sooooooo good, but the long term is what scares me straight...and I ask I think I can live with it...

I wish pain relievers could do what scaryroids do..sigh...

Oh the chips, and fluids from the dentist does make for a horrendous stomach...especially when they are whittling. I've had a few crowns..

What are pine-cone lilies, they sound so interesting..

I walked around like a zombie yesterday...I tossed some more plants into a holes yesterday...hybrids Hibiscus went in...if it doesn't survive the winter, oh, swell. I've been doing the pot thing since we moved here. Garaging it in the winter. I have another plant, Glory Bower that I have to garage. My regular Hibiscus were coming back each year I hope these will.

Two of my azaleas and my saucer Magnolia and an evergreen Clematis are getting black leaves..any ideas? I think my husband got to close with the grass killer. Nope...but I stil think he did...whacha think?

Another dental appointment this week?

I swim almost daily...I feel I am getting so strong. Since dosing with the scaryroids I out on 4 pounds just like that.

I am so weight sensitive and behavioral sensitive when it comes to drugs side effects. My husband says its muscles...as my legs shake and float in the water..Up to 126.7lbs now by night fall I suspect closer to 130. Two more days of the roids. I can handle 135, my max being only 5'3".

Plans for the 4th?


07-02-2008, 08:09 AM
Hi Oluwa. Glad you're feeling better. I understand not wanting to depend on steroids. I feel the same way. I'm at my max weight 168 at 5'7", wishing to go down closer to my minimum 140. When on steroids I got to 185, had to watch diet so closely to get down to 175 and stay.

I have my first deep cleaning tomorrow, nervous. But at least I have a cute doc to look at :D .

Pine-cone lillies come up in 2 parts. Spring and summer a huge fern like leaf (only 1) with 1-2" leaves. During August and September a stalk with a bud in the shape and size of an upside-down pine cone comes up. It starts off green, by mid september its rainbow colored with small white flowers. I look forward to them every year. Thinking off making a lot and sell them to the local nursery. Not many around, they look like a weed when first come out of ground. People tend to pull and throw away. I reconized the leaf when we moved here long time ago.

Got the tummy meds, yeah I remembred. I can't believe they would actually try to schedule a surgery on the 4th. Do they have no care that you may not want to spend it that way? Guess not. Sorry your back still hurts. I pulled a muscle some how on mid right of back. I don't hnow which is more, the pain or annoyance :lol: , oh well. Another thing to live with today.

We are supposed to go to one of my families cookout. Hubby doesn't care for my family, probably whine his way out. Then we have to pick my bubby-in-law from airport. He was living in NC, almost on south border near SC. Only been there 6mths. He never stays anywheere long. Annoying man. Then go to mum-in-laws and leave to see fire-works over the river.

What are you doing? I hope you get some rest and sleep well tonight. Chat later, kids fighting :roll: . Time to break tem up :lol: .

07-02-2008, 11:56 AM
Hi Oluwa, forgot about your plants. The leaves, have they turned black or does the black form on the leaves? I ask because there are 2 possibilties I'm thinking of. If it turned black, it could be from day showers. Does the sun come out soon after the rain? That will scorch leaves, happens in FL alot. We never water plants during the day, unless straight to the base (of course can't help when it rains :lol: ). The wet leaves will burn and turn black. The only thing that you can do is pick the leaves off, they will still nutriens from the plant. If the black is on the leaves, it may be mold. I use dish soap in warm water, about the same you'd do for washing dishes. You have to gently wash each leaf until its clean and all green again. Takes along time, but best and safest way to remove mold. My gardenia use to get that every other year, sometimes every year, and thats what we did. Plants with thick leaves are prone to the mold. This is a trick thats been passed down over the years. Hope this has helped :D .

07-02-2008, 01:21 PM
Hey guys, I am not new to lupus but I guess you could say I'm new to really dealing with the reality of my diagnosis. They are constantly finding new things wrong with me and I an like..........." I don't have time for this I have kids to feed! help ....... someone...... please.

07-02-2008, 08:04 PM
Hi Jullzz, welcome aboard. I know what you mean, even if I don't have lupus (I have FMS and CTD). But there is one thing I learned: if you don't stop and take care of yourself, then you can't take care of your kids. Who has time to slow down? Not me, but then my body suffers. Then everything around me (kids, hubby and house) suffers. Its hard, but you have to take care of yourself. Its really important. That I've learned here, and a good lesson. Take care my dear :D .

07-03-2008, 03:59 PM
Went to dentist, had the deep clean on right half. Sore and tender, but not to bad :o . Now there's another tooth they want to crown, more money I'm not approved for :( . Hopefully it'll work out some how. On the bright side I got my cover with the fake tooth for in public. No more looking like the tooths gone, yeah :mrgreen: .

Tired, off to rest. Who'd thought deep cleaning could make you so tired :wink: . Night, hopefully I'll sleep. If not, I'll be back to chat. Fair warning to all, lol :lol: .

07-04-2008, 07:54 PM
Hi guys, Can I join ya'll?
I am having a rough time of it right now. "IT" as Oluwa says has taken over some. Feeling extremely tired like I cant sleep enuf. Tummy problems and IBS is acting up reall good. Went to the gyne yesterday. Says I need surgery. Hysterscopy and ablation. Fibriods and polyps. When all is said and done I wont have any more periods but will keep my uterus. Gonna ask him if I will get my flat tummy back. Fibroids have caused my tummy to increase a whole pants size. Grrrr. Costly on the wardrobe.

HubbyMan and kids went downtown to see the fireworks. I am feeling the booms and bangs in my bones. Hurts a lot. Doesnt help that my neighbors are all throwing firecrackers all over the place. Boom Bang PopPop PopPop Crackle. Aaah back in the day b/4 "IT" I used to love takig my kiddos to see the fireworks. Maybe next year I wont feel so awful.

HubbyMan is recommending a seroquel tonite. Maybe I'll take him up on that.

Happy 4th ya'll.


07-05-2008, 01:24 AM
Hugsss NoodleMom

Sorry you're feel ummm crappy lol, I have IBS as well. For the most part I have it under control, but every once in a while it catches me off guard. Thank gawd for Immodium. I'm not sure if you can or do take it.

If you don't take it; it would be worth asking your doctor if it's okay for you. It makes a big difference for me when I flair up I can take one or two of those and with in half hour I can get on with my life pain free and not one bit tired.

Hugsss hope you're feeling better today :)

07-05-2008, 05:42 AM
Hi Noodlemom, glad you jumpeed in. So sorry you feel so bad and missed out on going with hubby and kids. I hope you feel better soon. I'm sorry you and SITC have problems with IBS, no fun at all I'm sure. Sporting nerve problem and back pain myself today, with a little bit of sore mouth from deep clean. Have a good day all. Hope its going well for you all :) .

07-05-2008, 06:54 AM
Hi Cheryl Vee...

Sheeesh sorry, I missed many of your posts...busy being leisurely.

Hey you....dentist,,,, half done already? Almost there, eh? Cleaning wasn't so bad, eh? Crowned again....in my family we call that being thee Queen for the day...hope you were honored with the title and treated with extra love.

4th..ours....Swam two times. Went for a Sunday cruise about the neighboring areas. DQ Chocolate Twist with Cherry topping...swam two times. Popped off a small display of fireworks a home. Riley bark as the sky light up and bang..and I Ooooed and aaaahhed in the background...Had grilled pork and velvety Yukon gold mashed potatoes...a little heavy cream makes them heavenly.

What was on your grill?

The black leaves are black, the tips burnt and crisped right up. I'll have to see if I can get, grow Pine one Lilies here...

Seen Wanted, the movie...don't. Out of 5 popcorns I give it a half of a kernel...Loud and boring...

Emptied my scaryroid pack...no therapy yet. Joint pain seeping in again..oh hello, IT!

Rescheduled PT for Monday, with the emergency surgery guy...and if it bombs, I have another appointment with a different PT on Wednesday.

Over the years I have lost faith in most clinical, hospital settings' staff. It is so different here... in Seattle they would have signs posted, if, you have been waiting for 15 minutes, some say 20 please let the staff know. Here, it says, please be patient with the delays. My next RheumBA appointment I am going to take a picture of it...Crazy sitting for hours..One appointment is an all day event...

Another gorgeous day out..thinking of going to a nursery downtown. I am in pursuit of a white and coral crape myrtles...nice ones.

It is Saturday, enjoy the weekend..beachin' it?


07-05-2008, 11:05 AM
Hi Oluwa, sounds like you had fun. Sorry the joint pain is sneaking back in.
Your dinner sounded yummy. I had a pot-pie, still on softer food. Soon as healed, I'm cooking me a grilled samon with grilled potatoes and carrots and corn cob that was basted in butter and parmesan (one of my favorite meals :D ).

I spent my 4th in a mini van for almost 6hrs with 3 grouchy kids to pick up annoying bubby-in-law. Body was so stiff, back pain got worse. Then had to take kids shopping to spend money from grandma. Then hubby and grandma were to tired to see fire works, so had to deal with disappointed kids. Lovely day :( .

I hope monday goes good for you. I'll be thinking of you and hoping all goes well. Chat again later :) .

07-05-2008, 06:14 PM
Thanks for the welcome ya'll.

Today has been very traumatic for my family. We had to admit our daughter the the hosp. She has a mental illness and today it tried to get the best of her. She became suicidal and tried to jump out a second story window. HubbyMan is with her now doing the intake and I came home to be with our other children. What is sorta sad is that they are so used to this stuff that they are doing okay. Asking me a lot of questions but not in panic mode. Thankful to our other daughter for he quick thinking to get us up there right away. The kids have been sorta trained in what to do when they see her getting to the point of no return.
If ya'll are praying people would you please pray for Butterfly.

Thank you.


07-05-2008, 06:29 PM
I'll say special prayers for your butterfly and I'll do some extra's for your whole gang, NoodleMom

Hugs, hope you and yours are keeping safe and well.

07-05-2008, 08:20 PM
Hi Noodlemom, I said a little prayer for your Butterfly. Sounds like you have great kids, tought well by there parents. God Bless you and your family.

07-06-2008, 09:05 PM
Stayin' alive...and feeling great in mind and spirit....

In brief...just a quick Hi since my back is ailin' me. Difficult to sit propped with head down and arms typing....g-r-r-r. PT tomorrow, yea...maybe more words to come them...

Prayers for Kasey's Butterfly are on their way....Head hugs...

Keep well..I am, well..besides my spine...

07-07-2008, 05:45 AM
God Bless your spine Oluwa, may it get better. May your app. go well :D .

07-07-2008, 07:59 PM
Hi ya'll
oh Oluwa...Im sorry to hear your back is hurtin. No fun. Does heat help? Ice? Maybe lie down if not to painful and put on an old Magnum PI...you'll be asleep in no time.

Cheryl...how is you mouth today? Some of the tenderness eased a bit. I remember when I had my root canal and crown. My mouth was so tender afterwards. I am glad that they gave you time to relax your jaw. There is nothing worse than the ache in your jaw....clear up to the top of your head.

Thanks for praying for me and my daughter. We called the psychiatrist like we were told on Saturday. She is now on a waiting list. I hope we get in soon. She is not doing well at all.

I went to shopping today to buy new bras. Did you know that the number on the bra size means the circumference around and the letter is the cup size? I just figured that out. I was wearing a whole size to small. Went up in number but still gettin all A's.

Have a good night...


07-07-2008, 08:51 PM
Hi Noodlemom, I said a little prayer for your daughter to get to see the phsyc doc soon. Mouth not bad. I've been blessed with a high pain tolerance. Mouth wasn't really sore to much after that and then the 1/2 deep clean. I get the other half done thursday. Going to doc tomorrow to see if I have shingles. Here I thought I had pinched a nerve in the back again. Until little red welts on tummy showed, stinging and itching like crazy. Clothes are a real joy to wear now,lol.

I hope your days get better :D .

07-08-2008, 04:57 PM
Thank you Kasey...

07-08-2008, 05:31 PM
Hi Oluwa, how's your back? Still causing lots of trouble. How was PT visit, any help? Sure hope so, miss your post. You are a great person who deserves no pain (can dream, can't we? :lol: ).

Lil Miss is 2 today, yeah!! She' 36" tall and 34 lbs, big girl like her daddy.

07-09-2008, 06:18 AM
Hey Cheryl Vee....

Here I am..I've posting in various threads about so the forum where I left posts unreplied to by me and to leave a print for the day to say I am here....

Been fartzing about in the yard. Yesterday had a landscaper come and plant a coral Crape Myrtle. I think I am going for two more. I've been redoing my porch pots...filled one with huge yellow Gerber Daisies...and two others with these beautiful annual flowers. No name, just annual. Pink, trailing and the leaves are like a succulent.

PT was like an interview. I of them and they of me. Measuring to see what the extent of my movements are. Upper and neck very limited. Today I see the other PT clinic and will probably use them. Well, because they are women at this other place... and I would feel more comfortable with a girl...we'll see. I felt the guy was staring, either wondering what I was or liking what I was..humm.

I'll let you know when I get back...

I've been dosing lots with Darvocet...a handful of Tylenol didn't even round the edges...so I am a dope head, trying to see through a mud pie thinking..

It is my neck that is like an L, well more like a side an obtuse angle, 145 degree/ Straight from the base of my head to base of my neck then down and out to begin my upper back.. gave me the willies seeing it on the MRI. Looked painful..no wonder it hurts. Seems to hurt more as of late...Maybe from the swimming, but well worth the relief for the rest of my body swimming does..

For all those who suffer from IT, FMS I would have to say swimming is the best joint, muscle reliever from pain there is. While in the water I feel so free. Reading this...do try it...with short fins and Speedo goggles to protect your eyes if you have SS like me.

We should take the acronyms from our illness and see what three or more letter words we can make out of them...



Happy Birthday Lil Miss...
Happy Hump Day (Wednesday)...

07-09-2008, 09:35 AM
Hi Oluwa, thanks for saying that for lil miss. I told her that you said that. She went "Yeah! See?", I showed her. I know she didn't understand, but cute when she went "ooohh" and went to her jibber-jabber. I have 2 crype myrtles, lavender and pink. I love them.

I would go with the place with women too. Creeps me out when they look you up and down. Plus, I'm not sure I could handle they're hands on me. Not saying every guys like that, just can't help feeling as if they are. Your poor neck, I do hope they can help. Is that a list of all medical problems you have? Wow :shock: , how do you do it girl? I can't blame you for the meds, I would to with what your going thru. Rest and don't over do it. Hope other PT visit goes well :D . I have my other deep-clean tomorrow, not worried now that I know exactly how it goes :) .

07-09-2008, 06:22 PM
Hiya people!! How was your Wednesday?

Happy Birthday to Lil' Miss!! Two years old!! What a fun age. Are you co-sleeping? We did and still do sometimes. Skooch our 7 y/o ends up in our bed maybe 2x per week. We enjoy/ed it. Those night time wakings were made much easier. It must be hard to parent ones so young with lupus. My youngest was/is 7 when I was diagnosed. You keep going girl!

Oluwa, PT, getting started now huh? I understand the wanting a woman to do therapy on you. Guys can sometimes be creepy. I think you are wise to listen to your gut about this.
L shaped neck, yeowch. I imagine it is painful. Are your shoulders then curved/rolled a bit forward to compensate?

Been a rough coupla a days here pain wise and mini flare up I think. Explain this for me if you can. I was diagnosed in November with SLE. Was in a pretty bad flare all winter. 4-5 months stuck in bed, constant pain, exhaustion, nausea...you know it. Then slowly I was able to manage the pain, exhaustion and stomach issues with meds. I developed GERD and IBS. Had a upper and lower scope, esophagus stretching. My stamia and strength I slowly regained. Pain and eating issues decreased. I was coming out of the flare right? I was able to pack us up, play catch with my sons, go camping, walk around the block, trim some hedges, do some raking.
I pace myself, I use a cane, I take a rest everyday. I am by no means where I was before my illness but a much better than I was in the middle of that flare. The past couple of days I have been in a lot of pain...similar to how I felt when in the flare. It seems that I did screw up my meds and missed a pain pill. It hurt to have the sheets wrinkled under my arms, walking sent pains from the soles of my feet into my legs. Extreme exhaustion, headache, eyes, back...yada yada yada...you get the pic. I seem to be coming out of it now. Slowly.

So onto my question....Flares? Can they be huge like mine last winter and can they be like the mini one I am having now? Did I come out of that huge flare or is it just the meds keeping my pain at bay and I still am in that flare or is this mini one a new one?

Clear as mud, my questions?

Tomorrow HubbyMan is taking the kids to the Childrens Museum and the we are all going to see a movie. Wall.E or WOWEE or something like that. I wanted to go along to the museum but I dont have the stamina or strength. So to conserve energy and strength I get to stay home. HubbyMan got me a few movies to watch so Ill just play with my new pup and watch movies.

Butterfly is doing better. We have been in contact with the psychiatrist and have increased her meds so she is much more stable. No psychotic episodes for two days. She is seeing her soon.

House news. We are looking at a house on Monday that looks very promising. Much nicer neighborhood. Both the bathroom and MBR are on the mainfloor. Kids can ride bikes and I wont worry they will get run down. Sidewalk along the blvd. Fenced in backyard.I pray that this is in Gods plan for us.

This is really long...hope you get thru it all.


07-09-2008, 11:33 PM
Cheryl Vee, hey...

No, I only have IT, FMS, RLS, GERDIE and SS...Gerdie seems under control and as well as RLS which I've only had a bout here and there over the last six months of wrestling with the legs at night. And with the SS, I get a few days of reprieve here and there, otherwise they feel like potatoes chips for eyes....then a little drop will do 'em.

Last cleaning to go, tomorrow? When do you get the permanent Queen for the Day, crowning?

PT was great yesterday...they measured what turns I can do. I've lost lots of movement all ways. We had time to strap me up to a TENS unit thingy. Not the zap and jerk the pain away, but this one felt like a million little hands massaging my back...creepy but nice and with heat for 10 minutes. Friday I wil ask for longer. Popped off a few stretches for the upper back...with that bit I felt a tremendous difference, but just now I woke to pain...popped a few Darvocets and now I am wide awake...ugh.

Did Lil Miss have cake and ice cream. I love when the little crumbs get mixed into the melted ice cream...


For me, flairs without black patent leathers can be by the minute, by the day, by the week, or by the month. No rules, no instructions, no game pieces it does what IT wants when IT wants. Always lurking, letting me know IT is there. An ache here, a slouch there...taunting, teasing, then it can take me down like a gazelle. Happy, prancing about...bamm..victim.

I think with IT there is always some reminisce of IT..

We have what we call our norm...for me, that norm would be continual daily joint and muscle pain, tired, headaches from time to time, rash eruptions, insomnia or sleep all day. I feel me, inside and out. What is your norm?

For me, flairs without an Ostrich feather boa can be just an increase of overall pain, twice the fatigue, fever or huge...where I can barely walk on the soles of my feet, that I crawl up the steps on all fours...unable to turn a door knob and headaches where my head feels like it will cave in or explode..I hurt from my teeth to my toes. Scabby rashes...for months I'd swear the Grime Reaper is lurking about...

Then times IT comes in like an ocean wave and goes out the next minute with the riptide....no rhyme or reason..

Keep a journal the strength, the symptoms and etc...maybe an adjustment can be made with your prescriptions or too so you can see what provokes and learn how to keep it tamed...

Oh, I just had a huge yawn...I think I am ready to try sleep again..

More laterzzzzzzzzzzzzz.

Morning ..Night..

07-10-2008, 05:42 PM
Kasey I'm glad to hear about the new house...sounds like you will feel a lot more secure! Sorry about the mini-flares. I was pretty sick at first - felt like one verrrry long flare (probably was.) Lasted many months. Now, it's generally mini-flares. Like Oluwa says, everyone has a 'normal' but it's not the same for anyone. I think we all learn to manage symptoms as they get tossed at us, and once in a while we get tossed something new and we have to learn all over again. I hope all your flares are only "mini"!

Cheryl did you do anything special for Lil Miss on her Big 2 day? I just love 2 year olds - so curious, so eager to experience everything (yeah, that's good .... and that's bad!) How's the mouth feeling today? I posted a reply about the shingles...I just feel so bad for you....nobody needs that little added blessing. :mad:

Oluwa I'm glad you had a good PT visit! Maybe this is part of the answer for your pain. I had a TENS unit that I used for a long time on a very bad neck. I recently loaned it to my son (he's a nurse) who hurt his neck. I remember how good I would feel after some of the PT sessions - but not all. :( I've gone to both men and women physical therapists, but definitely feel more comfortable with a woman. Probably silly - but if you're not relaxed, it might not be as effective, right?

I don't know was a crepe myrtle is....must be way out of our zone, huh? My garden has run amuk - everything starts so slowly here, and then the heat and humidity hit and it all goes nuts. My shrubs (which I cut back to 10 inches or less) are now nearly 4 feet high and taking over my front porch; my peonies are all blooming and the blossoms are the size of soccer balls - I have them in 'cages' but they are still falling over. Lovely to see, though - and they smell so good! I also planted some pavement roses this year (the fragrant kind) and they are just loaded with flowers. So my garden is lot's of pink - in lots of variations - and some purples and whites. Our house is redwood, and we live in the middle of the woods, so the colors really pop against all of those natural browns and greens. I'm not a very good gardener, though. It's a small garden, and it's all I can do to keep up with it.

My grandaughter turns 8 tomorrow - can't believe it! Because of her daddy and mommy's divorce, she'll have more than one party and will probably get more presents than is good for her. (Guilty as charged. :roll: ) Nothing I can do about the situation, but try to be as close to the Lil' Darlin' as I can.

I'm feeling pretty good today. Still struggling with sleep issues; waiting for a gastro appointment (they are months behind...who knows when I'll get in) so tummy stuff is still a problem - I'm learning how to manage. Hands get sore some days - very sore some, just a bit sore on others. Today, not so bad. I'll be off scaryoids by end of August. I'm praying no flares come to haunt me - no new symptoms. One of my docs said that sometimes the immune system gets less active as you age, and that might work in my favor. Not that I'm crazy about getting old, but hey, whatever works!

Hope all are well out there!


07-10-2008, 07:56 PM
Thanks everyone for the bithday wishes for lil miss. I showed them all to her. Yes I know she doesn't understand, but so cute when she gets excited and jibber-jabbers to the screen :lol: . We are having her party saturday since everyone works all week. I'm cheating this year and buying a ready-made cake and ice cream. I normally make cake and ice dream from scratch (love to cook), but with shingles driving me nuts I opted out for easy. Bought her a pink/purple radio-flyer tricycle. Can't wait to give it too her :D .

Deep-clean went well, thanks all for asking. Little more sore than last week, but still not bad. Besides, got to look at cutie dentist again :D .

Wow, everyone has so much going on. God bless you all, you deserve so much. You all sound like good women with big hearts. Take care, wish I had more time for each of you. Thinking and praying for all of you :D .

07-11-2008, 07:54 AM

A Crape Myrtle reminds me of a huge, gigantic ferns on top of a trunk with huge forms of grape bunches of flowers at each tips. They have such beautiful bark too...two-tone rich browns, very smooth...they come in a variety of colors.. true red, raspberry sundae, lavender, various degrees of pink..burgundy and white. http://www.fast-growing-trees.com/Tuscarora.htm

Till you can get in...the tummy, if it is Gerdie, try to keep something always in there and avoid the usual acid, burning foods. Yesterday I didn't take my Protonix deliberately to see how it is doing..ugh it still burns. A tender spot is in there still...

How is your esophagus..acid belching up, burn? If so, avoid having a full belly when going to bed and lay at an incline...

My hands... the same, as of late they haven't had my full attention. My spin moved to front position as of late. After my PT my spine felt wonderous...but by nighttime and throughout when I was suppose to sleep, it ached. I suspect waking, the TENS... the stiff muscles that I used to protect the spine are alive. All secondary symptoms of being on guard but the gnawing burning seems to be subsiding...

I feel in the end it will be the relief I have been waiting for. I get excited thinking, one pain down..next to go...

My newest woe, though very minor..waves of rashes. Neck and chest covered, this morning my forearms included. Just small, like chicken skin..not red, but itchy...humm. I need a bigger tube of Benadryl. Toothpaste tube size. Maybe Calamine Lotion..


Ready made cakes can be just as good and moist. I am not much of a baker. Cookies, yes..but the rest I always mess up..too dry, too flat..never knowing how long to whip, beat, fluff, knead or fold. My husband loves Publix's carrot cake.

How are the shingles today, taming a bit?

In case you are sending me PM's...know I haven't received any if you are waiting for a reply. You have my email address, eh..after you sent an email off, delete and I will still receive it...In case... marijohelen@aol.com. With the PMs if it is still in your OUTbox and you delete, I don't receive it. If, it is in your SENTbox, means I have receive it.

How is the daycare...more children?

TGIF..yeah...enjoy your weekend guys..

07-11-2008, 11:13 AM
Hi all. The valterx has toned it down to itching and stinging. Still hurts, but not so much as before. Was battling issues with taking pain pills, but I think Lauri has helped some on that.

Been having trouble with bottom tooth from deep clean. Woke up this morning around 5am with a mouth full of blood. Doesn't want to stop, but finally slowed down. Dental office been calling every 2hrs for an update, they were a little concerned. They said bite on a warm tea bag to get the blood to coagulate. Wasn't working to well, so opened tea bag and poured hot water in. Made a tea paste that I use for kids wounds, when don't stop bleeding. You put paste on the spot and cover, worked on the tooth finally. Yucky tasting though.

Hope eveyone's doing good. Thanks Oluwa for your thoughts on store bought cake. I have good kids who brag how there mom makes and decorates all her cakes and stuff from scratch. They love it, makes me proud. I just felt as if I was disappointing them. Silly, I know. I love making my kids things and watching there joy. It'll do, I just need to relax. Hubby's going to send pics of cakes at deli to my cell phone, so I can pic. I already have the toys I always get to decorate the cake. He said that way I can still add my touch too it.

Getting ready for tomorrow, giving house and yard good thorogh cleanings. Check on you gals in a little while and give more one-on-one time to each of you. Like to think of all you as good friends, you've all been there for me a lot lately. I've really needed it.

PS Oluwa, thanks for the info on the pm. I'm slowly figuring it out :D . I sure hope your hands and back get better and stay better.

07-11-2008, 04:41 PM
Hows yur friday treatin ya?

I have been knocked down with this stupid mini-flare up. Im feeling frustrated. HubbyMan took us to see WALL-E today. Halfway thru I had to go out and walk a bit because i was so sore and achey stiff. And yet Im not to stable on my feet yet so of course I stumbled over my own feet or a wrinkle in the carpet. I almost fell but was able to use the wall to steady myself. I went back in to finish the rest of the movie. By the time it was done I was just so done. I did manage to walk out and wait by the door. HubbyMan had to help me get to bed and so here I lay.

I feel like I could just scream. I want my life back. I dont want to not be able to do stuff with my family. I just HATE this.

I was supposed to go to a friends tomorrow but I wont be going now. I just dont have it in me.

Sorry for the rant....


07-11-2008, 04:53 PM
Hi K, rant all you want. It does help. I say try to go to friends, maybe won't be as bad. Could be too. You can't give up. Keep trying a little at a time. Don't let IT win. I know easier said than done, its so hard. Try to think of it as making memories, even if on side line. I just don't want you to give up. Kinda sounds like it, no means to hurt your feelings. Just try, if not then stay home. You'll feel better knowing you got up to try. A small start :D . Rest tonight, see how you feel tomorrow. Let us know if you go :) .

07-12-2008, 01:14 PM
Its me again. I seem to be a bit better today. Gonna try to take my girls shopping for bras this evening. HubbyMan will drive and pick us up when done. I dont have the energy to do the driving. A walk around the backyard was very taxing. Hope that they have a mobility scooter available for me.

I did not go to my friends. Just didnt have the energy. Also I wanted to try to save up for taking the girls tonite and possibly visiting a church tomorrow. We havent started to look for a church yet. Each of the Sundays we were gonna go one or the other of us was ill or something. Hoping for tomorrow.

My older son has an ear infection. Sorta like swimmers ear. It is the outer canal. Poor kid, he never complains when ill or hurt and this we knew it has to be bad. He couldnt sleep one night for the pain. He couldnt eve hold his head up straight. He felt better tipping it to he affected side. He asked me several times to put peroxide in to relieve the pressure. I also made him a little rice pack to put on it.

So that me. How are all you girls doing?
Hey I was wondering if each of us doing a little bio on ourselves so we can get to know each other better would be a good thing? Let me know and Ill fill ya all in on me. One thing I can tell ya is I have ten, yes ten children. How many do you have?


07-12-2008, 05:33 PM

No children. Two failed INVITROs. Maybe adoption...maybe.
Summerville, SC prior Seattle physically. Mentally a nomad.
Inflicted with...
Dog Riley Mildred
Cat Pookie Monster
Retired. I am titled a housewife in the south by my DRs..
I love to swim, wish I had gills.
I used to, I used to do many things, used to be exciting, a day filled now I am, am what my body says I can and that maybe just a minute of things...It's all good.
I like Margaritas and Aunt Nellies Ruby Beets.
And I wear a size 6.5 shoe.

Stumbled into this wonderful place a bit over a year ago when I was on my last attempted at trying to find my place with IT and IT's cronies. I felt I was closer to dirt than the dance floor...now I am closer to being content with just being.

I never talked to anyone with IT before....without you all, where would I be? Swallowed whole in a fetal position in bed? Probably...

This is a small bit of me...me, a girl at heart, a woman by menopause...who is nicknamed Oluwa.

07-12-2008, 05:56 PM
Had lil miss's party today, she loved the trike. Gotta a guitar from grams, she loved it too. All the kids had a good time. Found a pink cake with strawberry filling, big hit!!

I think I over did it. My legs and feet hurt so bad :( . Feels like someone smashed my feet and lower legs with a hammer. Unfortunately no one helped. Hubby and bubby-in-law slept off hang-overs. Then after everyone left, hubby left to watch tv. Everyone was too tired to help clean :x . Got stuck doing it ALL!! Just venting, do it again for my kids to give good memory of fun. Only problem, never had pain so bad that it brought tears :cry: . I took a pain pill, but not working to well.

Hows everyone?

Me: 34
3 kids and married
run day-care from home
love books and music
love swimming
love plants and landscaping
shy and quiet
love this place, wish found it sooner
tom-boy at heart, love outdoors!

07-13-2008, 07:35 AM
Me: 47
Married to my HubbyMan 27 years
10 kids, 1 dil, 3 birth, 7 adopted, only have six at home now. And my sweet beanie in heaven.
Just moved to IN, 4 years in MO, Home is MN
Homeschooling our 7y/o son this year
I used to like to read, love to garden, I would love to go back and finish my degree, camping is fun,
I have diabetes
Dog: CockaPoo Ellie
Cat: Shasta
Gecko: Diego
My life is busy raising my kiddos, trying to keep HubbyMan happy, and mainly just puttin one foot in front of the other and hopin I dont fall flat on my face. I am here by the grace of God.
I found this site last Nov. right after I was diagnosed.
NoodleMom: I parent Noodles

07-13-2008, 09:00 AM
Cheryl -
Glad party went well, but sorry you had to do everything yourself! Youre a good woman - I would have kicked his you know what!! Actually, Im fortunate - we had Jacks 10th b-day party yesterday with about 12 boys, and my hubby did most ALL of it. He is a rare breed, though, and knew I wasnt feeling well.
40 yrs old
happily marrried with 17 yr old girl and 10 yr old boy
SLE, FMS, Sjorgrens, Raynauds, osteopenia, COPD, HAVE HAD: acute hepatits, ARDS, seizure disorders, blah blah blah (believe now all related to SLE)
I love to DANCE, DANCE, DANCE - though last time I did, I got VERY sick, love to read, garden and helping women in recovery...
Blonde, blue eyed with a REALLY RED face - lol!! SHOULD weigh 125 (like usual) but on prednisone so up to 140!! (thats big for my little 5'4'' frame!
I absolutely LOVE this site too!! One of my fav things to do now is see how you all are doing. Im so grateful to have you all in my life....
Love Lauri

07-13-2008, 10:47 AM
I go something like this...

It started Wednesday AM

Diaper rash face cheeks to neck, chest to girlie to butt cheeks...I look like red sandpaper and feel like it when it rubs skin to skin. Grit, grit..itch, itch...Some places it is my skin tone, just white and bumpy and without itch, like back, bicep and forearms.

I declawed myself, draped in light cotton form fitting cotton....turtle neck and cotton long underwear. Just the moisture from skin to skin contact causes it to burn and itch...

Fresh Aloe from my plants
Benadryl tablets
Benadryl cream
Oatmeal rinse.
Cortisone Cream.
Distilled water as a wash and rinse.
Rinsed and rinsed my clothing and linen.
Nadda....I still itch

Not scabies, not mange..nor fleas.

My neck is the worse, where this thing began. It's locale of birth. It feels like a tight elastic collar encircled around my neck, like the collar of a Victorian dress.

It is beginning to feel like a chaffed and scraped toe of a leather boot when touched. Lifts and tuffs of dried out and itched skin...

I scream in itch pain, and I scream with relieve by itching...then the itching creates more itch pain...raw.

IT isn't currently stalking me...just living "my norm" so does it have anything do with IT? Hummm. Maybe just one of IT's miscellaneous rashes..

Humm...Primary doctor time, the one with a degree as my home regimes have not worked g-r-r-r-rr.

07-13-2008, 11:29 AM
Oh Oluwa,

Ouch! Im so sorry that the itchies decided to stay for a prolonged visit. They werent even invited. How do you get rid of univited houseguests? Ell-if-i-no

Poor girl.


07-14-2008, 07:32 PM
Hi Kasey, loved the idea of the little bio. Like learning a little about everyone.

Hi Lauri, thinks for the kind words. It was worth it, legs better today.

Hi Oluwa, you poor thing. Wish I had some good advice for you, but you seemed to have tried it all. Please let us know what doc says. Make sure you go, I only want to hear that you went. As you told me: scoot :D . Praying that you get relief soon.

Went to rhuemy app. today. X-rayed left foot, no blood or urine test. Lots of questions. I agreed to FMS study and surveys (teaching hospital). Bp was high 150/103, pulse 45, and body temp 95.6 (I took bp meds, office was cold and I nervous). Funny, nurse kept tapping bp machine. Thought it was wrong with high bp and low pulse. Had me do test on computer to test memory and reaction time when in pain. Had me fill out survey pain chart, did reflexes (only 1 out of 4 responded), FMS point check of body, move arms and walk around. I've never been so thoroughly examined before. EKG done too, almost 3hrs of test and questions. Said no doubt about it, FMS (new that, 3rd dx). They said I'll become a patient of his and he'll slowly go through more in future to find my source that's causing all this pain. Said I was to young to have shingles for normal reasons, so he'll be looking more into cause for that. Gave me Rx of Trazodone 25mg for sleeping. I'm to call in for the next 2wks 30min after waking to report pain statis. He said I make an interesting patient he's looking forward to working with. Was very interested in the joint virus I had when 22yrs old (now 34), thinks it may have been the start of it. No other docs ever thought it ment anything. He has a rhuemy he works with, so like having 2 at all times. Did I get lucky or what? He's a professor as well. He told me, I knew as well, that it will take some time to find out whats wrong and please be patient (how nice :) ). Also looking into possible nurological connection. I realized when I got there they were a clinic for rhuematology and immunology. This place sounds like a winner. Funny, no caffine was allowed today. May have impaired my reactions and pain :? , thats a new one. If its the way they want there test run, I can't help what they believe.

07-15-2008, 05:11 AM
Cheryl -
Thats wonderful!! Nothing like being taken seriously!! Gosh, your case sounds SO MUCH like mine did a few years ago...We'll have to compare notes someday. Jeez - if I could save you HALF the time it took my to get a lupus Dx, it would be worth it!!
I was prescribed Trazadone a few years back - it works good. It can make you a little groggy in the AM, just so you know. I hope you start feeling better and better, girl! Sounds like you hit a good spot for doctors!! My experience with immunologists have always been good. They are traditionally very thorough, and tend to think more outside the box than other specialties...good for you!!
Love Lauri

07-15-2008, 06:54 AM
Thanks Lauri, I'm happy too. I've always wanted in that teaching hospital. My ins. never covered it before, now they do and I grabbed my chance. I have a male and female doc, so nice to have both views. Thanks for the input on the meds, I researched it. Always a little nervous of new meds. I would love to sleep good, I lay down and fells like fews seconds later my alarm's going off. So annoying, feels as if I didn't even sleep. Some nights I toss for awhile, then wake up more tired than I went to bed. They seem to be stuck on depressed, asked and explained for 20 minutes. So sure I had to be depressed with having FMS. Liked I had high pain tolerance, kept saying interesting. Also decided to keep me off steroids for now, seems I react to strongly to fast to meds. I too wish I could hurry this along to some kind of answer, but waiting is part of the game.

07-15-2008, 08:37 AM
Hi All, just in for quick comment. Hubby went to the doc app. with me yesterday. Now this morning he called to see how I was feeling, and asked how I slept. Wow :shock: , that's a new one. Maybe going and listening has opened up his eyes to the daily pain, or at least more understanding. We've been down this road before, hopefully this time his understanding will stick. It's all I've asked from him in the first place :) .

07-15-2008, 11:30 AM
cherylv, glad to hear about the appt. and that you are being taken seriously. It feels so good to have an understanding doc. My doc i MO was like hat. I have an appt here at the end of the month with a primary care doc. Hope I am listened to and understood. Going to get referrals to a endo(diabetes) and a rheumy. I am praying for good docs. The OB here is good and understanding so maybe Ill get lucky with these others.

Hey lauri, How ya doing today? Did ya have a good weekend? Happy Birthday to Jack!! !2 y/o boys are so fun I have twins who are 13. Girl and Boy. I have to say that my boy was and is easier than the girl. He like BMX biking and skateboarding. That is a new discovery for him.All thing creepy and crawly have been his mainstay. What about Jack what is he into?

Oh Oluwa? Oluwa? How are ya girl. Missin hearing from you. Did ya get to the doc? Was he any help in getting rid of your uninvited house guest? Fellin any less itchy? Hope so.

HubbyMan and I went swimming today in our pool. It was calm and peaceful. We didnt let the kids in with us. It was sorta like a date in that we were alone without them. I sat in a swimchair and laid on an inflatable raft. Did some exercise movements with my arms and legs. Wore me out but it was worth it.
We are going to be moving in the middle of Aug. We got the house we were looking at. Much quieter and safer neighborhood. MBR and a bath on the mainfloor. Praise God!!! I am beginning to have a very diff. time getting up the stairs to go potty.
I have not been feeling good for about 3 weeks now. The weekend was horrible. Didint even get out of bed on Sunday. I decided to really take it easy for the rest of this week. Nothing on my plate to do. Ineed to rest alot and try to sleep well. I slept for 9 or 10 hours last night. HubbyMan finally woke me at 11am to take my meds. Hoping that if I listen to my body well and not try to do much even tho I do feel better that I can build up my strength and stamina so that the pain will not come. Feeling a bit foggy now so hoping that this makes some sense.

Have a good Tuesday girls.

07-15-2008, 12:16 PM
Hi Kasey, so happy you got the house :D . Take it easy when moving time comes. Hope you get good docs too.

Hi Lauri, I'd forgotten to say "Happy Birthday Jack!". Your a good mom letting him have all those friends, made his day I bet :D .

Hi Oluwa, how you feeling? Did you go to docs? What did they say? I couldn't imagine your misery my dear. Thinking and praying for your comfort. How's the back? Any better or rash making it worse? I hope doc was able to help you. Let us know how its going, we worry about you sweet lady :D .

07-15-2008, 12:43 PM
Hi everyone -
Oluwa - I dont know how I missed your post about your awful rash!! Did you go to docs today? I hope you find some relief soon!! And youve been feeling so good lately...praying this is a temporary thing..
Kasey - I cannot say enough how much my son is easier than my daughter!! Atually, he turned 10, not 12 (he had 12 friends over, I think thats what you saw..lol) He is so calm, easy-going - like my husband. She is 17 (almost 18) and she is "HELLO EVERYBODY!! Here I am!" Yes, alot like me...She a good kid, though, particularly for that age. Around here, that age group can be pretty wild...we live near the city, so...gotta be REALLY careful!! Im keeping prayers going your new docs are good ones...I think you go the day after I go to my recheck with the rheumie...the 28th is when I go...I have a feeling that I am going to need to stay on the 'roids...Ive been in a little flare this week...uugghh...maybe itll be gone by then
Cheryl - Awesome your husband checked in on you...Im sure its not because he's not an understanding guy...but it sounds like you are the type of person who likes to do EVERYTHING yourself...right?? High tolerance for pain, taking care of others kids, making your own birhtday cakes....am I right? He probably isnt used to you NEEDING any help. I know this first hand. When my hubby met me, I was a single mom, in college full time, working nights - I had it ALL together...he thought I was amazing. hahahah...little did he know what HE was getting into..lol..Also, my husband is STILL traumatized by my getting sick so fast when I was pregnant...I mean one minute I had a sinus infection, and the next I was on a respirator in a coma getting my last rites....He knows how quickly things can happen so...Either way, Im glad he's coming around. I was Dxd with FMS years ago, however, we didnt buy it, as there were so many other things going on that didnt fit, you know? Like seizures, swelling, etc. We felt at that time that they were just tying to shut me up. I STILL am a firm believer that FMS is connected to another autoimmune disease - like lupus, rheumatoid arthritis. I KNOW it exists - thats not it - I just think that somewhere down the line, those with FMS will discover they have something else as well. Thats just my experience with it. I also think that lazy doctors have done a HUGE disservice to those that DO suffer from FMS by Dxing those that DONT - jsut to label them with something - and undermine the true devestation of that disorder. I know SOO MANY women who say, "Oh, yeah, I have that ummm fibro-thingie..my doctor said so..." Then theres the poor woman, like you or me, who REALLY has it, that gets looked at like a nutcase when we say we have it. Its a legitamate disease that has gotten much bad press/reputation due to the docs who will say that ANYONE has it, you know? Does that make sense??
Anyhow - I have felt crappy since Sunday..yesterday was a bit better. I stayed out of the sun too, but today I feel like someone drugged me while I wasnt looking. Serious brain fog..floaters in front of the eyes, dizzy and I could sleep until Saturday...uughhh!! Im frstrated!! Want to feel better than this!! Its hot as Hades here in Boston too...maybe thats contributing...oh well - life with lupus...
Love to all - hope everyone is feeling better!
Love Lauri

07-15-2008, 07:27 PM
Hi Lauri, thanks for the comments and input. Your pretty much got it right how I am, just add really shy and thats me (funny combo=shy but independent :lol: ). Hubby just having hard time coming around. I used to be as strong as any man, outdoorsy, beach lover, and always bike riding or power walking. Now I'm slow moving, moody and can't do as much as I used too. All this stated slowly for me about 5 yrs ago. Each year more and worse symptoms. I still walk, slower pace. Almost every day with kids, we love it. I do understand how people feel about FMS. When my primary doc dx me last fall, I just stared at him. He took it the wrong way and got defensive some and started explaining it was real. I told him I know, I was just in shock. I had been trying to find out what was wrong after 4yrs (at that point) that I was starting to wonder about myself. He was glad I understood something was wrong. He thinks FMS is a 2nd condition and that a CTD is the colprit. He wanted me to see the rhuemy and have them dx me and see if its the CTD he believes I have (since there's quite a few). He said he'll tell me if its the same, or what he thought if its different. He said he'll try to get as much of the old me back as he can. I've had bad and/or crappy docs for years. Now I have some good and nice-friendly ones. God answered my prayers, I'm so lucky.

Oluwa, you ok? I know you post very little when ill, so smile when you get this. Thinking of you and wishing you well :D .

07-16-2008, 04:11 AM
Cheryl Wow, I'm so glad you finally found a good place for care! You just know that'll make a big difference in how you get treated...they take you seriously! Nice to hear hubby is tuning in, too. Lil's Miss birthday party sounds nice - you're a better woman than me to usually make your own cakes and ice cream...I'm impressed. I'm glad you let yourself off the hook this year, though. How's the mouth? How many appointments left?

Kasey How are you doing? Flare still beating you up? I hope the move goes smoothly - careful not to overdo. How's your son's ear?

Laurie Glad you had a nice birthday party for Jack - your hubby sounds like "a keeper" to do most of the work for that. Lucky woman...(I have a "keeper", too!)

Oluwa How are the 'itchies'? Sounds pretty widespread. Have you called doctor - dermotologist? Makes me 'scratchy' just to think about it...you poor thing. I wish there was something I could do to help. Does swimming help or hurt? I'm sending you cooling, soothing thoughts....a gentle balm for your ravaged skin.

57 (until Monday anyway..... :( )
IBS (probably)
CREST (no, not the toothpaste :lol: )
wonderful husband
2 grown sons
1 granddaughter, age 8
Love reading (fiction, non-fiction, biographies)
feeding the birds
walking by Lake Superior
This site has been a lifeline for me!

07-16-2008, 05:03 AM
Hi girls -
Jody - Yes, he is a keeper. No one's perfect, of course, but he's as good as it gets. Im glad to hear you have one too!! How have you been feeling, OK? Enjoying the summer? Whats the temp in the summer there in Minnesota? All I can picture is COLD...though I know it gets warm there too!!! People think the same of New England...
Cheryl - Its hard for the hubbies to watch us being so active become sick/less active..I guess I would be the same way if he was to become sick too, you know?

Well, I see my GP today. This will be the first time since Ive been to the rheumie and he confirmed the Dx. She is SOOOO nice...Yesterday, I took some photos of my feet (which were swollen bad) and my face (really red butterfly again). Im going to keep a little photo log of my illness as well as a journal. OK, guys, you should see how big my face is!! I have a round face anyway, but now I look like a lollipop!! Have to keep a sense of humor, though, right??
TT soon, ladies...
Love Lauri
Oluwa - Are you OK? Let us know when you are up to it, OK? I miss your gentle writing....

07-16-2008, 05:44 AM
Hi, Lauri. Actually, it's been really warm here. This part of Minnesota is pretty variable - like any area on one of the Great Lakes. It can be 80 degress one minute, the wind shifts and it can drop to 50 degrees the next. Lately, though, very warm. 88 degrees yesterday and very humid. That means storms coming today - I feel it in my joints! Hope your'e having a good day!


07-16-2008, 06:19 AM

I'm still trying not to itch.


07-16-2008, 06:32 AM
Thanks for keeping us posted....Hope you find some relief soon!!!!
Love and prayers -

07-17-2008, 01:33 PM
PT was wonderful..again...relief is here...

Rash...Diagnosed as Asteatotic eczema. Humm I wonder about the diagnose as being correct. Mine doesn't look the pictures, I am very tender loving to my skin. Maybe it is in the early stages before it goes nuts and cracks up all over the place....

Prescribed Locoid Lipo...steroid cream. Now how do I get it on my scalp... :shock:

Sigh...I feel cruddy on the outside, laughing.. feeling great on the inside....

07-17-2008, 07:45 PM
Hey Oluwa, sent you a pm. Glad your PT app. went well. Glad your feeling well on the inside. Hopefully the itchies will soon go away :D .

07-18-2008, 10:17 AM
I was so surprised by the very first post in this thread... some of it could have been my own thoughts. I go Tuesday and talk to a Rhumetologist. I have posted on this site earlier this week (question about rash and symptoms)- I have positive ANA, Lupus Anticoag, CRP and blood in my urine. I am still thinking the rhumetologist may say, I think you're okay. I am so used to being told everything was fine, just repeat the test or basically it is all in my head from my primary, I am not sure I can handle being told I may be sick from someone else. But the more I read, the more questions I ask, I realize... it could be. Thanks for a great site. And although I am not diagnosed with it yet, and may not be, I will continue to check in on the posts and pray for everyone. And if it I get diagnosed, I have a place to go. :D

07-18-2008, 11:05 AM

That was me, over a year ago...the thread starter. I've come along way if you read more of my journey on this thread...I felt I was pretty much done with living..with IT.

Know, you have a place to go without a diagnose too...here. Everyone needs support in many aspects of their lives. Lupus or not.

It does help to have someone who understand while you do the tango trying to get a diagnose...

Just make sure you voice all your concerns to your doctors. Ensure your symptoms are being treated. One doesn't need the diagnose to receive the care for Lupus....

Read here, read books that way you are more active in your care, your diagnose. I know what it feels like to be vulnerable, uncertain, afraid to question your doctors, waiting for directions, leaving an appointment more confused. It hurts..I have learned to be a big part of my care, sit up front and not in the back seat. That is the best advice we can anyone...ride up front..

Enjoy this day..hugs,

07-20-2008, 07:23 PM
Hi Jen and welcome. Glad you found this place. Oluwa is such a great insperation, you'll love her inputs. This thread she has gives me hope of improving my well-being. I've read thru most of it, and realize all the ups and downs many people have. Its not just me, and others really do understand. As Oluwa said, no dx is needed. Stay and chat, or vent. Whatever your fancy for the day :) . Good luck with doc appointment. Come back often.

Hi all, went to nephews wedding. He looked so nervous, it was cute. His bride, never met until then, was a beautiful girl. I hope she's as beautiful on the inside as the out. Lil miss decided to be the poster child for "the terrible 2's". Hubby had to take her out during the ceremony. We had to take turns during the reception as well. It was so hot too. We ended up leaving after an hour, she's normally so well behaved. No one in my family hardly visits, and hardly tell me of kids birthday parties. So they were complete strangers to her and she freaked. She doesn't like being in places with lots of people, much like her mother. All in all, glad we went. My nephew gave me a hug and said he was glad we made it, he's so sweet. I'd do it again for that hug, they grow up so fast. Hard to believe 20 years ago he was laying on my mom's couch sleeping so sweetly, me watching him for her.

Now just resting, have a mild headache from bright lights yesterday. I even had my sun glasses. I swear my eyes are getting more sensitive. My kids and I took a long walk in the shade today, then a dip in the pool. It was fun, headache or not. Why is it we need so much recuperation after doing things? It can be so annoying, so tired and defeated feeling. Oh yeah, shingles is finally going away :D . I only have pink spots and mild sting feel left. Weird numbness gone too, yipee.

May we all have a good week :D .

07-21-2008, 02:02 PM

I've been feeling a bit pooped myself...drained after polishing my hardwoods. It is a huge area to do,about 2000sf but cripes just swiping, dusting then polishing

Wear those sunglasses while on the PC..will help with headache and eye ache. I do that a lot of the time. An old pair near my PC always...Maybe you have IT or Sjogren's coupled with your Fibro..ya think...

I was quickly diagnosed with FMS the last time I had seen the RheumBA. Is FMS an accumlative disease like IT? I can't remember what I read...then if I do remember is my recall accurate? Hummm..

My rash, eczema, crud, skin rot.. is gone...I disagree with my doctors diagnose. I think it was just a reaction to swimming with a T-shirt on and not rinsing the shirt out after the first time. Usually I change up shirts and suits each time. Then my husband was saying I didn't shower one night because I was too..ah pooped. And then too it went away after I applied the prescribed steroid cream rapidly...poof gone. So eczema...nope.

I am just surprised why the rash didn't respond to my home therapies. I felt like a breakfast meal with the oatmeal flakes drying on me..so heavens knows what it really was, I am grateful it is gone, gone, gone.

Heat warnings have filled our TV airwaves. There too? I've acclimated so much to the climate here, heat doesn't bother me. I swam around noon today, usually I do early morning or evening but I was so exhausted I thought this would help get the oxygen flowing it did for a spell...

I think I am flaming...start of a flare. Or just waning, IT's teasing me. I have felt like a little turd lately...dull, bored..just doing the movies, TV, therapy, sleeping since summer began. Even Hershey's Plain bores me..yawn. I need a vacation from this leisure life, eh..

Still uncertain as to where, when the UP...if my Dad-in-law is coming from Nigeria...

Thank you for the sweet compliment...

Hugs...be well today..

07-21-2008, 07:28 PM
Hey Oh, think it could have been a possible allergic reaction to pool chlorine? Its doesn't happen often, but it does. When in water it normally will not irritate the skin. When left in clothes to dry, sometimes the chemical changes and skin gets irritated. Sometimes it may cause a rash. These are hard to relieve since the source was a harsh chemical. Always rinse body and wash clothes. I have experiences with allergies, personal and others.

I do have an old pair of shades, I'll give it a whirl. I do think I have something else, I'm sure FMS can not be causing all this. Needless to say, I too am still learning about FMS. I'm not much help there.

Its very hot here too, I don't watch tv hardly, so not sure of any reports. I go out a lot too, so don't really notice much. We are used to the heat, always hot and humid in the tropics for 8 months of the year. These 3 summer months are always the worse.

Your welcome for that. Try a chocolate truffle, spruces up my bored days of my hershey not helping.

My day has been long too, dragging. Having trouble too, see my post on jaw pain. What a day, you too I see. May we both feel better soon :D .

07-21-2008, 09:49 PM
Hi ya'll
How have ya all been?

Oluwa, glad your rash is gone. That sounded like it really was a rough time. Missed while you were gone. You polished all the floors. Oh my. So can ya now run and slide across them. Thats what my kids would do when we had wood floors. The house we are moving to has wood floors so Im sure they will be at it again.

Cheryl, Im sorry that you are dealing with the sun sensitivity. It hurts my eyes alot too. Then I get a headache. Its not so bad yet tho for me. Yea try the shades...cant hurt. Doesnt sound like FMS to me.

No fair talkin chocolate now that I have had to stop eating it. IBS....sucks ya know. Oh I love chocolate..eat it drink it oh man. Oh well canteloupe is good too.

I am having my surgery tomorrow am and I really aughta be sleepin now but ya know how that goes. Sleep is a big evader right about now. I fell down the stairs this morning. My leg gave out on me. I dont know if it was my hip or knee. Been having some difficulty with them as of late. I am a little anxious about this surgery.
Just put my little guy back in his own bed. We had some loud thunder and lightening tonite. He is afraid so whhen it storms he comes in our bed. He is gettin so big now that it is a bit(lot) crowded.

Well I really need to try to get some sleep so I can wake up just to go back to sleep for my surgery.


07-22-2008, 06:07 AM
Oh Kasey, you poor thing. Are you ok? Didn't cause more pain did it? What surgery you having done? Just can't remember, know I read it somewhere I think :? . Good luck and best wishes.

I feel silly wearing shades in the house at my computer :oops: . It is helping though, eyes are more relaxed feel.

07-22-2008, 06:11 AM
Kasey, forgot: aren't you pregnant? Baby ok from fall? Surgery not going to harm the baby? Did I remember right, or was that someone else?

07-22-2008, 06:14 AM
Hey CV...

Our pool is a saline pool...where the salt is converted to a chlorine base through a cell. We don't mix chemicals. I don't know if it makes a difference in the chlorine composition. But it is supposedly safer to the body..and our eyes do not get red. Actually after I swim my skin feels so soft...and my hair feels silky.

I usually always wash my clothes but on a very few occasions I haven't because of being tired and cold..ugh.

You are probably right.. I do believe something with the water, the T-shirt...residue detergent something triggered the rash and is not asteatotic eczema.

I too have always had sensitive skin...from metals, to cosmetics, to food...from bee hives to rashes.

How's the jaw this morning? All done with the dentist, still waiting on your permanent crowns?

Kasey...Thinking about you today..surgery day. Soon those fibroids and menses will be yesterdays news..wishing you wellness.

When we first moved in and I wasn't flamin I use to skate about the house in my socks...it has been awhile since I did the ballerina leaps and twirls..ugh...

Happy Day..

07-22-2008, 07:56 AM
Hey Oh, better today? Not to wiped out I hope. Maybe detergent after all, sometimes detergents don't react well with salts either. I forgot to change after beach one day, skin was aitchy and irritable. No rash, forgotten to change before and never happened. My detergent was "new and improved cleaning power", so we figured new chemical change. Got another brand, so far so good. I have sensitive skin, but tough. Needles for blood work doesn't poke thru well. They said it reacted like leather, but looks and feels soft. Go figure :lol: .

Jaws about the same. Dental work's on hold, already maxed out. The teeth are paid for, but the charge it'll be for the work is not. So we're trying to make extra money on the side to knock the bill down. Cost over $1,000 for the entire deep clean I had done. $268 per quad, yikes :shock: !! All in good time. Made new signs for advertising the day-care. Decided to paint them pale pink, with bold-black letters. They really stand out against the green back-grounds. I put them in front of shrubs and plants in the neighborhood to help them stand out. Hopefully some calls soon.

Hows your end today?

07-22-2008, 10:27 AM
im home now. Im on perkoset and had two shots of demoral.....flyin pretty high here.
m okay from the fall.Just bruised up my toes a bit. However even if they do hurt I wouldnt feel it as Im feelin no pain right now.

No Im not pregnant, must be someone else you are thinkin of.

My surgery was a d&c, uterine ablasion and hysterscopy. I go something like this:(fits real good now Oluwa) I lay down to try and sleep. I see pictures in my head but cannot remember them. I feel like I am asleep and then something startles me and I do wake. very odd feeling. Guess its a bit of dozing with odd pics in my head.

Thanks for thinkin of me, if ya think of it and would be willing to pray (TMI time again)please will you pray that I could go pee. I had a cath in and im swollen down there and so I am having a little trouble with that.

07-22-2008, 11:35 AM
I'm glad your home fine Kasey. As silly as it sounds, I did say a prayer for you to pee. I've had a cathader myself twice, totally understand. Sorry about mix up, realized who I got you mixed up with and she's moving too I believe.

Rest my dear, may the weird pics leave you alone and let you rest. All went good I assume? Check in on you later :D .

07-22-2008, 11:21 PM
Hey Oluwa,

I am glad you don't have the rash anymore. It does not sound like fun; though I am envious of the salt chlorinator. I am dreaming of one someday along with Willie.

Had MRI and it came out normal. My GP sent me to Hematologist (last Thursday) due to Antiphospholipid Syndrome and he ordered more labs on top of GP, and Neurologist. Go in for an echo tomorrow on my heart due to an irregular heart beat and possible issues with mitral valves which is "typical" of Lupus. Thursday am have to wake up at 4am for an EEG test at 8:00 am. Friday, I get to have fun with lower nerve conduction studies involving needles into the nerves since being diagnosed with Neuropathy in my feet. They took 8 vials of blood, 2 veins collapsed and finally finished the last 3 on the vein in my hand. Monday ate red meat and was saluting (vomiting) the toilet bowl praying for it too stop at 12:45 am. Next Monday is follow-up with GP along with follow-up with hemotologist sometime the same week. The following week follow-up with rhuemy. My life now revolves around dr's visits almost everyday if not every other day. I am tired of being tested, poked, hammered on, etc. Joints, feet, and fibro acting up severly. Lupus labs are within "normal" range. Does Sjogrens cause joint pain similar to Lupus?

I am sorry if I am whining. I just need to vent.

Thank you and take care,

Faith 8)

07-23-2008, 07:54 AM
Hi Faith, vent all you want sweetie. You definitely deserve it. Wow, you poor thing. No fun being the little lab rat, is it. Hopefully you'll get a break from all those appointments. Maybe that'll ease the joints, feet and fibro for you. Hope you feel better soon. Your in my thoughts and prayers.

07-23-2008, 09:05 AM

Well, aren't we popular with all the doctors..all those dates. Ya...Egads..eh?

Hopefully this week will be the end of them..and something, someone will reveal something.

I have Sjogren's too...one of its symptom is joint pain. For me, joint pain is joint pain..so who, SS, FMS or IT comes from. It all hurts...

But at lupus.org it reads...Symptoms that show up outside the glands are seen in one-third of people with primary Sjögren's syndrome, but rarely in those with secondary syndrome.

These extraglandular symptoms may include:

* joint pain
* muscle pain
* low-grade fevers
* increased fatigue.

Follow the link... http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutaffects.aspx?a=104&z=17&page=2

Feeling better after the toilet bowl visit last night? I hope so...hugs...

Be well, girl..

07-23-2008, 02:45 PM
ooohhh Faith, pin cushion.....OUCH! Sounds like youve been thru the wringer.
Hope some answers come your way soon.


07-23-2008, 05:03 PM
Faith, I'm so sorry you're the latest lab entertainment. I've had nerve conduction tests done 3 times. It's like some technicians excuse to play with needles and a Taser. Ouchie, ouchie. I hope yours goes quickly and as painlessly as possible!

I also have Sjogrens. I saw a rheumatologist who is a leading researcher in Sjogrens and she said (like Oluwa posted) that it's primary Sjogren's that has all of the symptoms that are so similar to lupus. Primary Sjogren's means that you have SS without another autoimmune disorder. If you have another autoimmune disorder (like lupus) and also Sjogren's, then you have what they term Secondary Sjogrens. Generally, that just means dry eyes, dry mouth.

I hope your long string of doctor's visits will be over soon.


07-26-2008, 02:52 PM
hey girls. Where are we all?


Im here

07-26-2008, 02:56 PM
Here too, looking around :D .

07-28-2008, 11:17 AM
Here I am...my husband did arrive home for the weekend..yea...departed this AM.

Nothing new, nothing to report...samo, samo..nothing better, nothing worse with IT. Should I be thankful..hummm. I am and hoping for mo' better.

Spine is feeling so much better, happy to say.


07-31-2008, 04:15 PM
I go something like this...

Life is still good...IT is being extra kind to me these days. I do believe it is from changing my thoughts that I associated with things that caused me stress...relocation, new home built, traveling man...

And..exercising regularly, swimming...to keep the oxygen and blood flowing through my body. Sit and lay to much and it settles to the bottom. Swimming has been my medicine...with the short fins, thanks Saysusie..

Also the supplements I have added to my pill box, the fish oil, super B complex, CoQ10 and the most recent ones..amino acids, L-carnitine, L-tyrosine and L-arginine.

The foods I select to ingest. Mainly anti-inflammation foods, the red, yellows, greens and blues. Berries, fish...

I believe sleep and exercise is key to feeling well, well...our wellness, what we who have Lupus call our norm...the normal everyday mild aches and pain.

My PT has been doing wonderful things for my spine...I don't think I will become a jellyfish after all.

After seeing another GYN, it has been said I do not suffer from amenorrhoea, but post menopause. As my Dad would say, I am a dried up Doe..ugh. Wondering when that happened...as I never developed many personalities. Pyscho. Just me, and the crankiness IT brings....

Over a year ago, I thought life was over as I knew it..it was, I adapted, I allowed the change to happened and accepting the change I alleviate much stress too.

I am just living another facet to my personality. A moderate, not an all at once on a move girl. Sure, at times I yearn for the old...and I also look forward to the new.

Over a year ago, I had myself in the dirt..'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.' I wrote....instead, in the dirt, I have planted flowers, trees and shrubs....whooohooo....

Over a year ago I wrote..'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'

I may get bored, I may grumble but it is going to be alright..being alive does matter. And I matter to a lot of people...

Indeed, I am blessed.

07-31-2008, 06:10 PM
Oluwa! What a great post. You go girl...you just continue to GO! So nice to hear your philosophy. A new normal. Life isn't over - just not the same. I need that reminder. Over, and over and over I need that reminder. Still crawling out of my little hole (not a big hole....just a little 'dip'....) But, finding hope again.

By the way, the biopsies from my upper endoscopy test? Negative!! Yippee...no Barretts, no HPylori. Just inflammation...from IT, I'm sure. But, if I follow the rules for reflux disorder I should be okey-dokey. Doubled the Prilosec...already helping. Still likely have IBS, but I'm learning to manage that, too.

Finally started the Anti-Inflammation Zone book. Interesting.......

Hugs, Oluwa....hands are giving me fits tonight...probably no more posts this evening. G'night!


08-01-2008, 09:58 AM
Hey you Jody,

Lovely to read you. Even a little dip for us can feel like a crater. Head hugs. There is always room from h-o-p-e..hope, with a dollop of whipping cream.

Yippee...I'm so happy, you know what I mean, it is just gastritis ...that can heal. I have that too..I mind my onions, pepper, spice... Mine feels pretty good lately, I haven't taken my Protonix for a few days..

Do you eat a high fiber diet? If so, lowering the fiber may decrease the IBS..the loosies. Any fructose in your diet. That too can be a trigger.

In the book I don't recall if it mentions inflammatory foods, other than unfavorable carbs... some of the inflaming foods are foods that high in refined or hydrogenated vegetable oils such as those found in margarines, potato chips and baked goods and by diets high in sugars. And red meats, fried foods.

Have you ever tried a vegetarian diet, not vegan..? Maybe consider that for a week, eat and fresh and see how your hands feel...

Have you tried omitting wheat products, and by products?

Have you added omega-3 oils, it is present in flaxseed oil and in cold-water fish, like tuna, salmon, herring, trout, mackerel, sardines, and cod liver to your diet yet. That may help, well not immediately but they are supposedly helpful in relieving morning stiffness and tender joints by reducing the inflammation.

I eat tuna and salmon weekly, but I also dose with 2400mg of fish oil daily. I don't know if it is coincidental why I am feeling better, but since supplementing my diet with more fish, vitamins and exercise my symptoms have decreased. I also avoid, as much as I can, preservatives and additives.

I doubt if we can ever get totally rid of the inflammation IT causes, but I believe we can keep it to a minimum through our eats too...

Have you tried wearing the arthritic gloves?

Thinking too much about what use to be, can be very stressing.

Sometimes if we just clean the table off, rid ourselves of the clutter that fills our heads and hearts of family woes.. it can make a huge difference. We try to own their problems, trying to solve them but in the end it just aggravates IT more and we become of use to no one, not even to ourselves.

Are you still working? Did you get the voice recognition software?

It's Friday..have a great weekend and find joy, in spite of the pain in the day, relax...avoid all the stress givers.

Eat for your fingers!

Head hugs.

08-01-2008, 04:21 PM
Hi, Oluwa. Thanks (as always) for all of the good advice. I eat pretty healthy - try to have something like salmon once a week at least. I also take omega 3 fish oil three times a day. I haven't been eating red meat for several months now. Meals are often a small piece of fish or chicken and a fresh vegetable. If my husband wants red meat, I will often just scramble an egg - suits me just fine. I eat some whole grains, but not what I would consider a high fiber diet. I do indulge in ice cream now and then - gotta' have some vices!

Had an absolutely horrible night. Joint pain - fingers, wrists, elbows, knees, feet. I took a Trazadone and 2 Aleve, but got almost no sleep at all. I changed bedrooms, tried drinking a glass of milk, got up and read. I think I slept about an hour. Should've gone into work, but there was no way I could. I've been napping a bit today, but will be heading off to bed soon - so tired my eyes are crossing.

Haven't activated the voice recognition stuff yet, although I'm pretty sure it's loaded on my computer. If my hands keep getting worse, I'm going to have to do that. I won't see my new rheumy until October, so I'm not sure if I can get anything different for my joint pain until then.

Still working - half time. There are weeks I just don't think it's a great idea, but other times that I can't imagine sitting home. I don't think I'd be able to get social security disability - just doesn't seem like I'm sick enough for that - and right now I'm carrying our health insurance. So, I'm kind of stuck for a couple of years. We'll see.....

How are you? Still feeling good? I hope so!

I should let my hands rest. My joints are 'lumpy' - this is getting very old. :-(


08-03-2008, 02:12 PM
Glad doing better Oluwa. Sorry for the joint pain Jody, in time hopefully it will ease.

08-04-2008, 09:16 AM
Something sucked the life out of me....IT??? Off to PT with what little energy I have left from showering and ratting the hair.

Wha...happened this weekend....Z-z-z-z-z-z-z-z-z..put, put, sputter...cough, cough. Driving on fumes...

Chat up when I get back, if the therapist leaves me with any vavoom to drive home with.


And Happy Monday...

08-04-2008, 10:44 AM
In the same state here, barely putting along. Did too much last week I guess. Conserving energy for son's 15th BD party saturday (tons of teens coming :shock: ). Another store-bought cake and ice cream, no home-made this time either. Nieces are coming tonight to help a little this week. Good kids, I'm needing them this week. Physically and emotionally drained :( .

08-04-2008, 12:05 PM
Oh my gosh, guys, me too...Sooo tired...feel drugged (and not in the good way either, lol)...My eyelids are like cement. I think Rob calls it the lead blanket. Thats EXACTLY what it felt like. I actually thought I may be getting an infection somewhere...sinusus hurt, feverish, pain when breathing in on upper right side...uuuggghhhh...aggravating!!!
I just want to feel like I did when I first went on the steroids...I feel as if Im almost drifting backwards...
I hate when I cant figure out what is going on...is it an infection? decrease, then increase of prednisone? steroid tolerance? or just IT?
IDK - I hope you guys get some of your energy back soon...Cheryl, so glad you have some help this week...people, though we hate to ask, usually love to help others, you know? Its US that dont like it so much....lol...loss of some control?? Def for me - I like to be in control..lol
Talk soon

08-04-2008, 06:41 PM
Ooooo.....this sounds like a bad weekend/start of the week for lots of us!

Oluwa, how was the PT? Are you any better or still putt-sputtering?

Cheryl, you're a good mom to have a lot of teens for a party....lots of work, even if you don't have a homemade cake. I hope you can enjoy it.

Lauri, I'm sorry to hear you're struggling too. That 'lead blanket' feeling is so depressing. I hope tomorrow is a better day.


08-04-2008, 07:55 PM
Thanks gals, looks as if its a crummy week for all. The girls were a bit hiper tonight, hope it chills tomorrow. It has been a year since they were here. There getting older and busier with their lives. So utterly exhausted, when do our bodies get a break?

How's it going for everyone? To tired to type more, but would love to read how's it going for everyone.

08-06-2008, 02:31 PM
Hey ya'll
We are all moved in. Not settled by any meaans but we are here. This is the very first move ( and we have moved a lot) that we have done that I sat on the sidelines while everyone else worked. In fact I wasnt even on the sidelines. Mostly laying in bed. I did not pack one box. I did not do any cleaning of the old house, I did not do any cleaning of the new house, I did not unload one box For all intents and purposes I coulda been on vacation. Except that I wasnt in sunny Hawaii. No, I was stuck in my bed. Crummy as it is. Too many crackers I think.

I am doing laundry today as in telling them what load to put in and what the setting
should be.

I am not sleeping real well, HubbyMan gave me a percocet the other night cuz I was in so much pain. Pneumonia seems to be getting better. Cough is lessoning. Headaches come and go. Downing my fourteen different pills each stinkin day. Tryin to eat even when Im not hungry.
Stress....ooh what to say about stress? Nuthin' really good Im afraid. Life is stressful. Raising special needs kids is stressful.
Moving is stressful. HubbyMan starts a new job is stressful. Classes for him start after Labor Day. Kids start next Tuesday. HubbyMan and I are having some issues due to one of the kids issues. Why cant we get on the same page?

So here I sit squishing my backside flatter by the day. Wish I was a little birdy....Id fly away from all this.

Yeah life is ....well it just is.


08-06-2008, 07:38 PM
It'll get better, as corny as that sounds. Now that you have the move over, maybe the other things will slowly fall into place. Life does suck at times, but its our lives to live. As horrible and painful as I feel most the time lately, I'm still happy God gave me another day to live. I could only imagine with all the stress you have and limited as you are. It will get better, you deserve it. Check to see how you feel tomorrow dear :D .

08-06-2008, 08:37 PM
Hi Kacey & Cheryl,

Kacey, I responded to you on the other forum about dry eyes.

Thank you for the kind words on all the tests.


08-06-2008, 09:20 PM
Hey Oluwa,

doctors, and doctors and doctors. Neurologists, nerve conduction testing, EEGs, Echocardiograms, MRIs. I learned that nerve conduction tests only the nerves that are alive and not ones that have "dropped off." This is the reason my feet are non-reactive to the hammer. I sit here asking myself what was the sense of running the nerve conductions? They are not cheap by any means at all. After 2 1/2 hours of waiting in the neurologist's office after seeing my rhuemy, I was told that things will get "better" since the structure is not damaged. I asked if my memory would get better? The answer is "no."

MRI is normal thank goodness. EEG is minimally abnormal but that could be due to the meds that I am on. Eckocardiogram has slight issues with triscupid and pulmonary valve regurgitation. Not significant as of yet; but will have to monitor.

I left my house yesterday am at 8:15 to drive to LA to see my rhuemy at 11:15 and the neuro at 1:00, and finally got home at 7:00 pm driving in pain on the way home. I took a Soma, then a Vicodin, and then another Vicodin. Then I soaked in the tub for 3 hours heating the water. Nothing dented the fibromyalgia and the sheer exhaustion.

Good news I was asked to participate (one time only) in a study to determine which gene out of 30 causes Lupus. They will do the initial tests, and then the remaining vials (7) will be held at the Oklahoma Medical Center for future testing as technology advances. They will keep the vials until 2075. I hope that they find what they are looking for and if I can help in that effort, I am very happy to. Maybe, just maybe, it will lead to less of us in the future having Lupus although I won't be around in 2075.

It was a very frustrating day, as the neurologist is located in a hospital with 2-3 towers. It's like a city within a city within Los Angeles. I parked in the wrong tower and was totally lost. A very nice woman directed me to the right tower and I signed in trying not to sniffle and hold back the tears of frustration. Before leaving the rhuemy, I was about to have a panic attack because I couldn't find my keys, until the nurse reminded me that the valet had my keys.

It seemed like one thing after another. I am frazzled and in pain sitting in the neuro's office under open flourescent lights. The neuro wants to see me back; I think not. There's nothing else to do but a lumbar puncture; which he advised against. Why do I want to sit and sit and sit. I took the elevator downstairs and nothing looked familiar; it wasn't the same way I came in. I asked a couple of employees what parking lot could I possibly be in showing them the stub. Finally found the right tower and hit the road at 4:00 pm and LA traffic. My husband works in civil and can find himself out of a bag; I do not have a sense of direction whatsoever. It's frustrating. All I wanted to do was click my heels like Dorothy and arrive home. Three hours later, I walk in and my hubby has dinner ready. What a guy!! I take a Soma, then a Vicodin, and then another Vicodin. It's not touching the pain so off I go to the tub for a long 2 hour soak.

I am done with the neuro and the hematologist. The hematologist wait was 2-1/2 hours for the initial, the clerk was angry because I didn't fill out in detail 10 pages in 5 minutes, and then the follow-up. I was told I had antiphospholipid syndrome and to take aspirin. I am then told to go back in for an aspirin sensitivity test. Gee, if I am taking Vicodin and Soma, I would think aspirin would be no bid deal. Apparently not. Wants us to follow-up in 6 months; I think i am going to have my GP run hte tests and just consult with the hematologist. I am done with doctors for a while. Enough is enough. Do they not realize that they took an oath to help people and having patients whom have fibro wait for 2 1/2-3 hours is incredibly painful.

On the follow-up they didn't have the test results. They refused to call my dr's office; so I walked slowly down 2 buildings to get the results. They were angry because I didn't complete the paperwork fast enough; apparently it has to be put in the computer prior to the dr seeing me. Doc saw me for 10 mins on follow-up and maybe 30 mins on initital exam. I didn't understand why I had to have a physical and have my whole body pounded with a hammer. I was just supposed to see him for APLS. He told me I had "Mild" pain in my thoracic back. It just felt like a 15lb bowling balling bouncing on my body and I tried to not react. This is the exact reason why I didn't want to see him. I don't want him treating and hammering for fibro or Lupus.

I am sorry to vent; it's just been too much. I am overwhelmed, exhausted and tired. I hope everyone is doing okay. Thank goodness for this forum where we can vent our frustration. We are blessed with this forum and all you guys.

Take care,


08-07-2008, 07:31 AM
Poor Faith, vent all you want. Wow, what a day! I hate the hammer test too. I had no response either, not sure why they did it. Lucky for me I was numb a little that day, so didn't feel it either that much. How many times he was going to "tap" because of no response was another question.

I don't blame you not wantng to go back, I wouldn't either after all that. I give you credit for the courage of doing it alone. I freak in crowded places and have mild panic attacks myself. I cancel if no one to go with in the big town where rhuemy is. I can't stand all the people and commotion around me. I get back in the car, not wanting out. At least hubby had food ready, and sorry no relief for pain. I was in a cold rhuemy office for over 3hrs talking and taking test and waiting around. Its very painful, especially when they want you to get up and walk back and forth so they can watch. After that long, its was more painful limping. I got lucky though and got good docs, I can't complain.

I hope your feeling and doing better today.

Kacey, better today?

08-07-2008, 09:16 AM
Oh my gosh, today is so frustrated. I was going to have them take everything out of the garage so we could organze it, After moving in and just shoving whatever in there it was a total disaster. There is stuff that I need access to. It is a nice cool day, o humidity and no rain. Perfect for this job. They are all complaining and each is going in a million different directions all at once. Thats six million directions.

Anyway to do this job I need some mental clarty. I forgot to pack it. It is gone. I need some physical stamina also. That is gone too. No where to be found.
They have the whole garage empty now. People are stopping to see if we are having a garage sale. Maybe I should just let hem come and take it all.
I cannot do anything . I am in way to much pain. Told HubbyMan just to have them put it all back inside in some sort of orderly fashion. When I am feeling better then I can at least maybe access some of the stuff.

I fell asleep last night after dinner. HubbyMn woke me at 11pm to take meds. Slept until 10am. Headache, muscle aches, joint pains. It will all be better someday.
My oldest DD is coming for a visit this weekend. I am so excited. I hope that I feel some better when she is here. We are celebrating HubbyMans 51st and ds 8th Birthdays.


08-07-2008, 09:56 AM
I am so far behind on post it is overwhelming to catch up..so I am going to reply to the recent posts..everyone...

HI to everyone who reads us, reads this...hugs.

Hey CV...
Still pooped from the girls, and who were these girls? What did I miss...a birthday? Staying home this weekend or did you decide to go?

Kasey, is the pain muscle pain or joint inflammation. If it is inflammation maybe try a NSAID. Sounds like you have a moundful going on, see, stuff like that I could never do anymore. I moved one too many times since being married. Packed too many boxes and cleaned too many drawers after I sold my home. I feel for you. And to raise special need children, you are special too...

Gearing up for your vacation...isn't it like this week or next? I wish you wellness today. I know it has been rough for quite a spell. Have you thought anymore to increasing your prednisone for a bit? I'll visit you on the other thread..k? Hugs..

Still feeling spent too...tackle the symptoms one at a time is my motto.

What a ride of a day you've had. And I get all b1thcy after waiting 90 minutes. You needed a head hug yesterday..and probably still do, after all that...Squuuueeeeze. Gosh, after that I too would be mentally scarred from seeing another doctor...

I felt your pain driving home...focusing on being numb, two more miles, one more...50 feet...can I cry now...

Next time when they hammer on you, if you let them...says ouch it friggin hurts. Pain shouldn't be sucked in, in a doctors office. React, react. I do. I say, wow..ow! What the?

And you know the golden rule...no apologizing for your pain, being tired, being frustrated. Pain, fatigue...we don't need put guilt on ourselves too..so stop it...

And Me...I'm doing just okay. I feel like a noodle, a noodle in pain. I am having difficulty recovering from PT and swimming. The muscles and joints moan like a haunting goblin on Halloween..oh, that is me...moooooo-ahhh.

I asked the RheumBA if a small dose of scaryroids would fine. Nope. Really? Only when I can't walk...sheesh. Actually he thinks the side effects outweigh the benefits at this time. Drop a Lortab and a Naproxen.

RLS is sneaking in on my nights again. It had been a spell since he was sniffing around. Back on Requib..slept like a baby till the dog leaped up into the bed, then the neighbor started mowing at 7am. I imagine to beat the heat of our summer days...

Also prescribed Restasis..Rasta Sis?... for my potato chip eyes. I guess my sunglasses while waiting in his fluorescent light cubicle was a clue. My eyes looked like I was sch-snockered. My body probably would have been happier if I was.

My story isn't that inflicted with pain. I am doing alright. I still manage a skip, a happy smile in my face. Well, except when I applied my new bottle of face cream and blew up like a over blown balloon, hardly able to smile from a pinched up bloated, puckered lips face. Reaction. Humm, changed the formula. Life could be worse. I have been worse, so I am grateful for the day. Very grateful.

Keeping focus, keeping faith deflects my pain. Focusing on the spot that pains. I see the spots getting smaller..causing my pain to feel numb while I lay in bed waiting for Lortab to take over.

Enjoy the soon to come weekend, in anything, with anything..no joy is too small to savor.

Over n out.

08-07-2008, 12:16 PM
Hi Oh, glad to see you. Good to here doing better, even if still in some pain. Hope the pt starts helping again.

Here: the 3 girls are my nieces. Here to help for the week. My oldest turned 15 :shock: today, having his party saturday. Going to be full of teenagers. The girls do help, but more cooking and laundry and all around busyness for me. Today not to bad, some have been worse. Lately though bones just ache and hurt, totally wiped out feel and sluggish feel in body and head. My talking is agrivating me. I know what I want to say in my head, but having hard time saying it. It comes out completely wrong or slowish, my minds screaming at me what it really wants to say. So frustrasting, I'm begining to not want to talk. Docs think nothing of it, chalked it up to a FMS issue. Same with typing, I keep hitting the wrong keys, or typing complete words I don't mean too. I have to back track so much.

08-07-2008, 12:21 PM
OOPs, I hit the wrong key :x . My mind is screaming and my nerves are frazzled. So tired. My meds to help sleep are not working so well now as were before after only a month. I'm waking up in the night again, can't get sleepy and feeling so tired when I get up. I don't want to move. Fun, fun, fun! Never stops lately, oh well. Talk later when mind is in slower motion, so body can keep up. Know what I mean :? ?

08-07-2008, 02:00 PM
Hi Cheryl,

Thank you for the kind thoughts. I don't have a problem going to the rhuemy, it's the neuro at Cedar's Sinia (spelling) that I get lost in. I don't want to get out of the car too. That must be common. Wow. My husband is an angel to have dinner ready; I called him 10 mins out of town and he is great with a BBQ.

I am sorry you didn't have releif either while 3 hours in the rhuemy. I hate the waiting and pain. I totally feel for you too. Thank goodness my rhuemy is very quick because he understands what waiting does to us. I am very blessed many times over to have the rhuemy that I do have. He was not his normal self, and I asked one of the nurses what was wrong. He is tired, and has to go to Washington DC to speak in front of the gov about Lupus. I now feel bad and I will send him an email on how thankful I am.

The neuro told me the same thing about talking and the brain not communicating at the same time. It is a Lupus/Fibro fog. I am sorry and wish I could help you out there. The only thing that helps the speech issues are Provigil or Dexadrine because it makes your brain, mouth and fingers work better. I have a little bit of it late at night; or when I am very exhausted. I hope you feel better soon. I know about the mind screaming; or you are reaching back in the brain to find the word and can't pronunciate it. Well, I hope your day gets better.

Faith 8)

08-07-2008, 02:06 PM
Hi Kasey,

Wow!! I really feel for you as I would be totally overwhelmed. Just cleaning out my closet this Summer one day at a time was too much. I don't really have a lot of clothes, trust me.

I totally feel for you. Can you start by maybe a room at a time. Have the kids work on the bathrooms and packing things away. Tomorrow, maybe start on each of their own rooms. Sometimes, it's just a day or week at a time.

I would definately take some ibuprophen as Oluwa suggested. It might help with the muscle aches.

Maybe this weekend with the b-day party, you can get some additional help? People totally understand; more especially when you are in pain. I am sorry you are in so much and I hope you feel better soon.

Take care,

Faith 8)

08-07-2008, 02:08 PM
Hey Cheryl,

I hope your Saturday is a good day so you can enjoy your son's birthday party. I am keeping you in my thoughts and prayers.

Take care,


08-07-2008, 02:27 PM
Hi Oluwa,

Thanks for the hugs!!! I really needed that and I am hugging you back and hope the pain leaves.

Relafen is great for joint pain, I don't understand why he wouldn't give you a shot. You can have up to 1 every 3 months without it hurting you. I have never noticed any side effects.

Ahhh, RLS, isn't that just a joy? I had one running up and down my leg yesterday. Eeeck and I could see it moving. I hate those bouncing rumberbands.

I read you are on Restasis, go to the website and sign up. They will mail you coupons to attach to your receipts. After so many trays purchased, they give you so many trays for free. I have to warn you, my insurance pays 50% so I have to pick up $270.00 through mail order of my insurance company. It's cheaper through mailorder and it comes to your door. One of my fellow lupees told me to use the drops and reuse them as long as they are left in the sterile tray. I can spread one vial to last me 4 days. There are 32 vials in a tray. Don't touch the vial to your eyelid, and you should be okay. You will need to refrigerate them. I also use TEARS Naturale FORTE, you can find them in the store or I found 3 boxes very cheap on Ebay. I use the drops maybe 12x per day in between the Restasis. My doc Rx'd Lovaza capsules 1GM, 2 caps 2x daily by mouth. They will help lubricate your eyes and they are not expensive. I know that look, red eyes feeling as if they are going to break at any moment. I hope you get the Restasis filled quickly as they do help.

I hope you get to feeling better; hopefully the Lortab will take over very soon. I wish everyone joy also. Our pastor was just talking about do we leave a spot of joy after talking with someone or visiting? I am working on that one. Out of the blue last weekend I started talking with an older couple at Samsclub while eating a hotdog. My hubby asked me if I knew them to which I replied no, I was trying to spread some joy.

I hope you feel better and you are in my thoughts and prayers. I hope the bloating goes down quickly.

Take care,

Faith 8)

08-07-2008, 02:30 PM
Okay Oluwa and Cheryl,

I said Relafen and my brain is not working today. GRRRRRR

I am going to join Cheryl and just stop typing and talking. lol.

I meant Kenalog cortisone shots. They are great and you can have them up to 1 every 3 months. They are a blessing and they are absorbed by your skin which bypasses your major organs. If you take more than 1 every 3 mos (I had forgotten in the Winter) you get cortisone acne. I have to write it down on a calendar so I don't forget now.


08-07-2008, 02:33 PM
Hi Jody,

Oluwa mentioned that you are going on vacation. Where to? Anyplace relaxing?

Can you pack us all up in your suitcase so we can join you? lol. I hope you are doing well and are rested up for the vacation. Keep in touch and let us know how it goes.

Take care,

Faith 8)

08-07-2008, 02:35 PM
Hi Laurid,

I hope today finds you better. I have had the blanket over my eyes too along with swollen eyes. It's definately not fun. I don't take cortisone and I wonder if it is just part of IT.

I hope you are finding some joy today.

Take care,

Faith 8)

08-07-2008, 08:10 PM
Hi Faith, thanks for kind words. I know fibro causes so much, just thought maybe doc was just blowing it off. Good doc, but you hear them say so much "it's more than likely the FMS is causing that as well", you start to wonder if they really mean it. Thanks for letting me know, I believe it more so when someone with fibro says it. They really know, not just assuming. Its so frustrating, I stop to speak a little slower to help say it right and get looked at like I'm a fruit-cake. Everyone pics and ask if I had a drink, I say no and they say maybe I should have one then. They all have a good laugh, even though I'm not laughing. They don't understand, they tell me to lighten up they were just joking. If only they understood how it felt, oh well. Why dwell on it.

I don't see how you made it to a docs office with towers. I live on a dirt road, very small town. I freaked and got overwhelmed with new rhuemy office that had 5 floors. I think I'd cry if I went where you did. Glad I live in my tiny town :) . My rhuemy is nice, I was there most that time sitting and answering questions. Very long interveiw and exam. He's very thorough.

Each day's a little better than before. I've taken to night walks 4-5x a week alone. Just me and my mp3 player, pain or not. Sometimes its slow and hard, others its easier and fun. Either way my moods improved when I get home. Its something I'm starting to look forward too, helps when day gets stressful. Wearing good shoes all day and when walking like suggested from people here has helped pain and mood too.

Hey Oh, face better? An allergic reaction to that chemical thats in some lotions you mentioned before perhaps? Hope it gets better.

Well I'll chat with everyone else later, hands really tired. Hope everyone's doing better :D .

08-19-2008, 01:42 PM
Hi Cheryl,

You are not alone feeling silly talking and typing. I had it happen to me today at work; and my coworker looked at me like I had grown a 3rd head. It's really embarrassing (spell?). No, we are not fruitcakes, we just need to slow down. The neuro also said it might be due to combo fibro fog and meds. I don't think it is meds.

Thank you for the kind words on the doc office in the towers. I was sooo out of my league. Our city used to be a small town and it's grown, but nothing like Cedars in LA. Eeeck. I thought I was going to have a panic attack when I couldn't find my car (4 garages). Thank you for the sympathy.

It sounds like you are doing well with walking. I try to walk in the pool, and then pain. The neuro said to walk in the pool. Why do we want to do something when it causes pain? I wish I was as good and diligent as you are with walking.

I am zonked and going to take a nap before picking up kids at school. I hope you are doing well.

Take care,

Faith 8)

08-19-2008, 07:46 PM
Hi Faith. I only make myself walk because fear of being to stiff. I'm afraid I'll not be able to move one day if I stop. Silly I know, but it keeps me going. Hope your doing well.

08-20-2008, 05:11 AM
It is good to see the boards back up. I have missed coming here. Been in a flare since my surgery if not b/4. Real depressed. I hurt, Im tired of hurting. Im tired of this bed. I tired of being tired and sick.

Lots of changes happening at my house I have a lot to be thankful for but can seem to get outta this fog. This yuck feeling

Later, Kasey

08-20-2008, 07:44 AM
Sometimes I'm not sure which is worse, the fog or the pain. Both can be just as bad as each other at times. Feel better soon dear.

09-17-2008, 09:30 AM
Just a summary of what, where and when...

I go something like this...

Withdrawals. I've been missing you, and you and you too. Site was down, site was up, down..up...seesaw...motion sickness? Nope just emotion sickness..withdrawals. Hugs.

Entertaining....My Mum-in-law has been with us a bit over 2 weeks. Her week visit was extended to three unexpectedly and will be returning to the UK Monday. Having company keeps me away from the PC too. I feel I am being rude....and too, my PC died of a Blue Screen Error. Kaput and now I am on my new replacement one.

Tweaking.... the minors woes IT brings....my belly has been haunting my nights and I've been avoiding all contact with the sun. The sun been wreaking havoc on my eyes and skull. Skull aches...and body aches which makes me a dull host.

GYN appointment last month. My girlie...doctor is suggesting to remove my little pear because of the c word. Cancer. I feared, I worried...felt life was even more dismal than what IT could ever bring.

I am past the damaged spirit after finding that out and I am seeking a second opinion. I like all of me, to be with me till I am done roaming the planet. I dread losing even a small part of the physical me. Seems so primitive, so unnecessary, so I wait. Second opinion October 3. Crazy, almost a 6 week wait...

Nothing exciting, nothing extreme.,...just living the life that was set out for me. My response, my reply, my reactions is what makes each day a gift of happy or a gift of sad...but nevertheless a gift of a new day regardless of how I chose to spend it...

A day of being sad is not a day wasted, but a day I learned..a day I grew. Another day to grow... into making me, me...Oluwa.

Hugs..head hugs.

Laterz, next week...

09-17-2008, 10:32 AM
Oluwa, Good to hear from you.
Sorry about the C word. Glad you are getting a second opinion.

Have Fun with Mum and see you soon.


Pretti in Pink
09-17-2008, 12:06 PM

hang in there, please know that you are in my prayers as you seek a second opinion and make your decision, keep that positive and optimistic attitude,we'll chat with you soon.

09-17-2008, 01:24 PM
Hugsss Oluwa,

There's not a day that went by that I didn't stop and say a little prayer for you.

I will hold you in my heart while you wait for the second opinion. Praying for good news.

Head hugs girlie, take care of your pear.

09-17-2008, 05:43 PM
We are all holding you up in our prayers. I've been through the "C" word turmoil too!
Glad to see you back and hope all is well with you Mum!

Peace and Blessings

09-17-2008, 05:57 PM
Oluwa, so glad to see you're back. Life has been a bit too eventful, eh? The big "C' is such a scary thing to hear - you are wise to get a second opinion before you make your decisions. No matter what, you will be you, even with missing parts. Prayers, hugs, and warm thoughts for you, Dearie. Hope you enjoyed Mum's visit.


09-18-2008, 06:14 AM
Thank you Oluwa, King of the Jungle. When I read your post, I almost jumped out of my chair. It sounded like you were describing :) ME. I really felt like maybe I was making this up in my head. That's how doctors make me feel. If a test comes out negative, they imply that there is really nothing wrong, but that I am stressing and that stress causes these types of symptoms.

I just joined this forum today. Although I am not happy that you are going through this too, I am happy that I am not alone and that God saw fit for me to hear from other people like myself.

I am a black 44 year old female. I have suffered from Lupus symptoms from as early as I can remember. Unfortunately, I was in foster homes and some of the foster mothers thought that I was faking to get attention. I wish they were alive and well so that I could show them that I was NOT faking sickness, but that Lupus is not an easy disease to diagnose.

Just last night, I was in Cooper Hospital because of the horrible headaches I have been experiencing. I literally felt like my head was going to detach from my spinal cord. I felt like I would die at that moment. I almost could see heaven and desired to see heaven at that moment.

There are days when I feel like such a loner. My husband has Cerebral Palsy (he is not in a wheelchair, nor is he mentally challenged), but when you have a spouse who has a physical condition, it is hard for them to sympathize with someone who also has a physical condition. I used to be there for him, but now...I am there for him when I CAN be.

I love God, but I often wonder why that I, one of 13 children born to my mother, I am the only one who has this dreaded disease. I would not wish this on any of my siblings, but I wonder why I was chosen for this journey. I don't believe in reincarnation, but if I did, I would wonder what I did that was so bad in my former life that I should have to suffer with this disease.

God is faithful and whatever I have to learn from this, I will learn. Today is better than yesterday. Tomorrow, if I see it, hopefully will be better than today. Whatever the circumstance, God is still great and He is still greatly to be praised.

Thank you.


09-18-2008, 07:00 AM
Oh YTP, don't you just HATE it when they give you THE LOOK and suggest that you're deranged? I have a primary care physician who actually listens to me. I always encourage people to keep looking until they find a primary and a rheumy who DO listen. Makes a lot of difference.

I'm doing pretty good today, finally got a good night's sleep after Monday's gum surgery (ICK!) but still can't eat solid food. Since I'm vegetarian and since nuts are to me a primary protein source, I've been eating a lot more eggs to make up for it. Beans are good but...well there's that after effect... :oops: ... so I try not to have them every day.

It is a beautiful fall day here in the midwest, there are still so many people drying out from the recent floods, but for those of us who are high and dry, this is a perfect early fall day. A few trees are starting to change color, and the air is crisp.

Hope all are doing well - catch you later.

09-18-2008, 03:30 PM
Hi HatLady and thanks for responding. Where in the Midwest are you? Two of my children are in the midwest.
It is cool here (in the 70's). It feels good to have that natural air instead of the air conditioner.
Tomorrow, if God chooses, I will be going to the doctor. Hopefully he will be able to tell me what is going on and put me on some type of medications so that I can stop being in this pain. I don't mind getting fatter (I am 5'7" and 200 lbs). I say that now, but if I do get fat due to medications, I will probably get upset.

When were you diagnosed with Lupus? Was it hard for you to accept? Does anybody else in your family have Lupus? Before I got diagnosed with Lupus, I had only heard of it once - when I was a little girl and my social worker had it - she thought I had it then, but my foster family thought I was "faking sickness" to get attention. Oh, if they only knew now that I was for real. It would not change anything. The damage is already done.

Sorry to be so long winded, but it feels good when you have someone who TRULY understands. I am not looking for a pity party, but I am looking for understanding and only people who are going through what we are going through truly understand.

Thanks again for responding.


09-18-2008, 03:49 PM

I just wanted to say hello, and welcome. I know how you feel about Dr's looking at you like you are a hypochondriac! I'm sort of the uncommon type of person to be diagnosed with SLE, as I am a white male. I got some really strange looks myself. Still do sometimes when I see a new Doc or Rheumo.

I was diagnosed in 2004. My mother was diagnosed with SLE about ten years ago. She is thankfully in remission. Please don't worry about sounding like you are having "a pity party", because nobody here will ever think that. This is a great place to vent, and unload to others who really do understand. I'm glad you found us!


09-18-2008, 04:26 PM
Thanks Rob for replying with the words I needed to hear. I am glad to know that there are real people out there who REALLY UNDERSTAND. I get tired of trying to explain this condition to people. Somebody said to me the other day, "You don't look sick. I would never know anything was wrong with you". I said to her, "I don't let people know what I am truly going through because I don't want people feeling sorry for me". I probably should not have said that, but that is how I was feeling at the time.
Tomorrow I will go to the doctor and see what he will say. My husband is going with me so maybe the doctor will get a real earfull of what I am experiencing. I am pretty sure he will refer me to a Rheumy as he is a Primary Care physician.
I sometimes think I am crazy to desire steroids, but at this juncture in my life, I am really tired of the pain. I am really tired of being tired, depressed, sad, angry, forgetful, and fearful. I thank God for this site because for a while I considered checking myself into a mental facility because doctors made me feel like I had absolutely lost my mind.
The only person in my family that I know of who has this dreaded disease is a cousin on my dad's side. She is in her 50's and she has lost her hair and her skin is a mess. She was on steroids for many years and she just recently got off of them. I put in a call to her today, but she was not home. I just wanted to see how she was doing since she's been off the steroids.

09-19-2008, 02:43 AM
Welcome to the forum. My name is Kathy and I will be 50 in December. I know exactly how you feel about the doctors treating you like a Hypochondriac. I have had Lupus most of my life, but I did not get diagnosed with it until I was 36 years old, because nobody would listen to me. There are 8 children in my family and only 2 of us have Lupus. I have a younger sister with Lupus. I can remember as a child telling my parents that my knees hurt horribly and that the sun would make me deathly sick and oh the headaches. I would be told that all I wanted was attention etc and that the pain in my legs and knees were just growing pains and things like that. I had been to several doctors through the years and would be told that I was stressing needlessly and that stress was causing all of my symptoms. It was horrible to say the least. I had almost all of the criteria for Lupus for many many years before getting diagnosed. The Rheumatologist that diagnosed me told me that I have one of the most classic cases of Lupus that he had seen in a lot of years. You know I still to this day harbor a lot of resentment to the doctors that would not listen to me and let me suffer for many many years needlessly, but you know that is water under the bridge now. I have a suggestion for you to tell the doctor that you will be seeing. You can force the doctor to listen to you. I know this worked for me. You see when you see a doctor, you have to pay them right. This is how I finally got them to listen to me. I told the doctor right out that I wanted to be tested for every test he could think of for Lupus and to go over my history that I provided for him to review. I reminded him that I am paying him for a service and that if he could not or would not do as I wished that I would not pay him. I told him that if he told me that it was just stress etc, that I would get right up and walk out and he would not get paid. I was deadly serious. I got his attention real quick and he did listen to me and he did order every test he could think of and he also tested me for Thyroid problems. All of the Thyroid tests were normal, but all of the tests for Lupus indicated Lupus and he sent me off to a Rheumatologist immediately who officially diagnosed me and he got paid for his services. You have to be very assertive to get them to listen to you and take you seriously. I hope that you get some answers and referral to a good Rheumatologist. Pleas keep posting and let us all know what is happening ok. Oh and my Rheumatologist told me that the CDC has ruled that Lupus is inherrited. I don't know what else to say other then it is not all in your head.


09-19-2008, 03:55 AM
Hi Kathy and thanks for responding. Unfortunately, I don't have money to pay the doctors so that threat will not work for me. I am in the process of trying to get disability until this situation is resolved. I am going to the doctor today and my husband is going with me. I expect that he will tell the doctors what he sees me experiencing and the doctor will refer me to the rheumy. It is a sad day when you desire steroids just so that you can stop the pain. The doctor prescribed medicines that will make me sleep so that I don't feel the pain, but when I wake up, the pain is still there. I don't want to spend my life sleeping because I have a lot of goals and dreams I would like to fulfill. I have already written one book and I would like to do the follow up to it as well as write another book.
So, like I said, I am on my way to the doctor. Here's hoping... :roll:

09-19-2008, 07:24 AM
I hope that the doctor listens to you. I understand about the money as I am not doing very well financially either. I have tried to get disability, but keep getting turned down. They tell me that, because my husband and I each have a car and my husbands family belongs to a farm incorporation that we don't qualify. I think that it is rediculous big time.

I hope that you can get some medication that will help you. Maybe they will put you on Plaquenil. This is one of the top of the line Lupus medications. Keep us posted ast to what happens at the doctors office.

What book have you written? I think that it is great to publish a book. I wanted to, but I don't have the patience to do it. Maybe someday I will.

Well post back ok.


09-19-2008, 02:26 PM
Hi Kathy,

I went to the doctor and of course, the doctor I had seen last week was not in so I saw the RN. My blood pressure was 149/102. The RN was concerned that I am in dangerous territory since I already had a stroke and two TIA's. I take Metropolol, but I only take it when my heart rate goes really fast and out of control. So I got chewed out and was told to take the Metropolol every day regardless of how I am feeling.

Until this charity care comes through, I cannot go to a Rheumy. Hopefully, Monday, I will have the answer I am looking for. The ANA test had not come back yet so I did not get the results.

09-22-2008, 08:47 AM
Sorry I am so late in posting. Good to see the site back up!

Oluwa so sorry to hear about what's been happening. I had a very dear friend go threw that and she has been C word free now for 5 years so hang in there. I agree that getting a second opinion is a wonderful idea, but if (God forbid) the out come is the same, remember that it's not your guts that make you a lady. It's who you are that makes you one *gentle hugs*.

YPT, so sorry you are doing the limbo dance like so many of us have done and are still doing.

I apologize for not welcoming all the new members, but unfortunatly I've been fighting my own demons recently. I have fallen into that hole and am having a hard time finding my way out. If you had followed any of my previous posts, you'd know they are fairly certain it has hit my liver. I go in 2 weeks to have it confirmed and to see if I need a transplant yet. My days are spent in denile or tears. Mouning the life I had and my future. Even though it is very treatable, treatment comes at a very high price. My immune system will be so suppresed that I'll have to live like the character Monk. Carrying around wipes, fearful of catching even the smallest bug. Not to mention the possible hair loss, diabities, C word, thinning of my skin, and the moon face. I worry that I won't live to see my two beautiful boys graduate high school. That they will grow up without a mother. I feel sorry for my poor, sweet husband who didn't bargin on this roller coaster ride when he married me. Who has his own worries and fears, but never mentions them and always holds me and comforts me threw mine. I am blessed as I know some have spouses and family that don't understand or treat them that since you can't see it, it's not really an illness. I hope soon I shall awake each new day with a feeling of being thankful for each day I am given, but I'm just not there yet. I am not letting it slow me down though. I am staying very active in my children's lives, knowing that everything I do now will be wonderful memories they can cherish later. No matter what happens, I never want my children to doubt my love and devotion to them.

I will ask of all the wonderful people here to do one thing for me. Say a prayer for me as I start this new battle to save my life. And take from my story that even if you're doing well now, treat every day like you might not wake up, because you never know what tomorrow might bring. *gentle hugs to all*

09-22-2008, 09:31 AM
Hi YPT...

How are you this day? I am 47 since this past May....

Indeed Lupus is a dreaded disease along with the gazillion others that humans are plagued with. Is it carma, dharma, journey, path, blessed, chosen, cursed we ask...we all walk the path not unscathed.

So, worry not why you, or feel guilty for thoughts of... why not another. They all have their tribulation...it is the heart, the spirit, our thinking that changes the reception of it for everyone. Their ability to move forward easier than many or the lack of it and fall into a hole. Me, I have been more of the latter.

We all have blah days, even those who are spiritually fulfilled. Their blah days may last for one day, but most people it usually last for three. Anything longer I would always seek an out through faith, doctors or communication with someone...

I wish I could take away the need for you to feel validated by those who passed and whom did not believe in you. Elementary years, 30 or more years ago Lupus then was a hard disease to diagnose...the word Lupus was hardly heard of..so I hope you will be able to look passed their misgivings, their ignorance.

Being in a foster home must have been trying. I don't have to imagine to know what it feels like. Were you placed together with any of your siblings?

How is your day pain? What prescriptions have you been prescribed for your pain to sleep?

I too desired a daily dose of Prednisone, but was discourage by my Rhuematologist. Long as I can function, which I do pretty good at I do not need it. But I long for that normal feeling that the last taper dose for my back brought. I dream.

It is okay to have a pity party. I've had many...especially when I have been the guest of honor and also the only guest to show. Sometimes those are the best kind, when we can bawl, sob and let it out alone. It gives me a strength, a strength I thought I lost to move on with the day...the found strength...it filled my lungs then my body with a fresh mega dose of oxygen like a big sigh can bring. One breath at a time to calm our heart, our hurt feelings down...

I understand your words, it is nice to find someone in our same situations. It makes going through hard times easier, giving me a feeling of reassurance that I am not alone. I hope you can find that need met here too like I have...

Happy Monday...a new week to see what life brings...enjoy this day.

Head hug.

09-22-2008, 10:01 AM
Thank you everyone, for the warm shout outs...

Gosh, I had did a review posts since your last visit. Yikes..pages, pages. How will I every ketchup...I'll just jump in...

My Mum-in-law departed today...this morning. Back to my routine. The site is up, my husband is back in his office and I with my PC and Internet...plants, gardens, doctors appointments. A dull routine, but I kind of missed the routine, probably because I was out of my orb, norm...trying to communicate with my Mum, speaking in one syllables was hard. Times we just looked at each other and smiled.

I enjoyed her visit, but it brought out a bit of my stress rashes. Had to clip my nails to the quick. Steroid cream, Neosporin nor Benadryl brings any relief. So, I figure the scabby hinder, rashed out stomach is from stress. I have notice I always get this scratch till you bleed rashes when I feel uncomfortable inside . And when I scratch, oh, I am in a haven...like a dog getting his belly scratch. I just lay there with my limbs stretch out....

Cancer is a scary word...a scary disease. A disease that seems to have a insatiable appetite for the living, that is what I feared.

But anywho, I am back...Time to read on...


09-22-2008, 10:31 AM

I've mourned my past and feared my future many times, but not with what you may have to go through.

I can relate to the emotion...I am sorry you have to feel that.

Dear Heavenly Father, God Almighty, be near Debbie in times of her weakness and pain. You made her, you love her. I ask... sustain her by Your grace that her strength and courage may not fail. Thank you, Dear Lord, our God, my God. Amen.

Psalms 23
23:1 The LORD is my shepherd; I shall not want.

23:2 He maketh me to lie down in green pastures: he leadeth me beside the still waters.

23:3 He restoreth my soul: he leadeth me in the paths of righteousness for his name's sake.

23:4 Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.

23:5 Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over.

23:6 Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the LORD for ever.

Head hugs....

09-22-2008, 12:10 PM
Hi All,

I called the hospita today and the lady in charity care told me that I will have to wait about four (4) weeks to get the "pink" card so that I can go to the doctors.
argh!!!!!!!!!!!!!!!!!!!!!!!!!!!!! :cry:

09-22-2008, 01:17 PM
Head Hugs Oluwa,

It's good to see your font back on the board. :) I've miss your hinder :lol:

When do you meet with the doctors for discussions on treatments?

09-22-2008, 02:22 PM
Hi SITC...

I have a scabby hinder..again. The rashes have taken over..again. Scabby, but not crabby this time.

Treatment..I'm have a second opinion appointment on October 3. The whole thing seemed weird, or perhaps I am weird as I am going through GYNs down here like candy, but the bitter kind.

Maybe I am so skeptical because I had seen an advert in the newspaper here, advertising for hysterectomies and advertisements for dentures. Two for one..crazy. Makes me feel like I am in a time warp, like the 1950's. Yank anything out, teeth, uterus..not my little ukulele. Give her a valuim..sedate the housewives...ewww.

This is what the last GYN said...why anesthetize you twice. Here, they put you to sleep for a DC at the hospital. If we do a DC and there is cancer all over, instead of just the site she biopsied, she would have to do a hysterectomy anyway. Which I would be under for that too.... Gee, lets detach it now so we don't have to put you to sleep twice...hummm.... See, that doesn't sound normal does it? Gee while we are in there, we might as well take this, and oh, that too...

It just didn't settle right with me. It just seems so primitive to me....

She was so matter of fact like. I appreciate directness, honesty..but it seemed like ordering a sandwich for her...

Am I waiting too long? Ugh...

Head hugs,

09-22-2008, 03:57 PM
Hugsss Oluwa,

If we could take your Action Jackson and my Dr. Do Little_letsjustWatchIt and mash them together, we'ld have a pretty good doctor :lol:

Be very frank with Dr. Second Opinion. Let them know you are not in to the whole "while we're in there" mentality. Hopefully they'll get the message and be frank with you about what actually NEEDS to be done.

I think that's where your doctor messed up with you. Came across as a vacuum salesman trying to get you to purchase all the niffty difty attachments, when all you needed was a broom.

Hugs to ya and I'll be keeping you in my thoughts.

09-24-2008, 07:56 AM
Ah, Debbie, I'm so sorry you have this battle to fight. I pray that you and your family will find the support that you need, and the doctors will have the right answers. (I'm very glad you have a loving hubby!) Hugs to you, Debbie.


09-24-2008, 08:05 AM
Oluwa, I'm glad you're getting back 'in the groove.' Missed you....

Sorry the hinder is rashing up again...yes, nerves can do that. I'm sure you're right.

Oluwa, I had my 'parts' removed when I was just 29. I went to 5 GYNs before I finally took that step. It's a monsterously big decision at any age...but that young, it was life-changing. Seemed the inevitable choice at the time, but I will always wonder....

Stand your ground; get all the opinions you need to make you comfortable about your decision. But, can I say that it's not entirely off-the-wall for the doctor to only want to put you under once? General anesthesia carries it's own risks. Our younger son is an anesthetist and he talks about that a lot. Ultimately, though, it's YOUR call. It's YOUR 'girlie'. YOUR health. You have to feel confident in whatever procedure you decide on. Hugs, Oluwa....and here's to a good scratch!!


09-24-2008, 10:25 AM
Not trying to derail....
I went to see a rheumy today. I have not seen one since I was diagnosed almost a year ago. We just moved to a new state and my primary wanted me to see a rheumy.
My new doc, a rheumy says I may not have lupus. She took ten vials of blood and will x-ray my hands next week. I am going home to visit with my sisters who I have not seen in six years. I am excited for that.
I am so confused about all of this. I know I am not this disease but to all of a sudden be unsure if in fact I do have it makes me ...I dont know its just that all the symptoms and new things that have happened since I got sick a year ago....what to think now.

I feel as tho if I dont have it then why am I in such pain and why are all these other things happening? It feels almost like the lupus diagnosis was the answer. That it was oka that these were happening because I have lupus. Does this make any sense? My mind is crazy.


09-24-2008, 04:26 PM
I've missed you too Jody...

I left you a post on another thread. Humm..I forgot which one...

Yep, this hinder and belly rash is maddening. I have it on my elbows too.

Twenty-nine..that was so young and indeed life changing. When we change unwillingly, forced, we have to... we always wonder what could have been. Like too, what could have been, us without IT, eh?

Thank you for the support, your words. The first two times I had been put sleep, never thought a thing of it..this last surgery for my neck I did...now for this, I fear a little from all the horror stories you read, hear about.

I fear not of death, but the unknown though I believe in God, I still have a twinge of of the what if this is all there is..you know what I mean. And do I have anything that I don't want anyone to see or read after I die....chuckle.

I wonder what will one think if they read my journals, my scraps of papers, poems, my hard drive...hummm...laughing out loud.

Hugs Jody.
Oluwa...now where is my horse hair hairbrush to scratch my hinder with?

09-28-2008, 02:07 PM
Oh Oluwa you poor thing! Maybe a nice sit in a tub filled with oatmeal bath and bubbles?????

Noodlemom, don't you hate it when docs can't agree? Just when you get comfy with thinking about yourself one way, they try to pull the rug out. I remember when I first went to my current rheumy. She sent me for a zillion tests. The tech's eyes bugged out when she read the list....she conferred with the other tech. Then she looked at me and said "do you have someone to drive you home? This is a LOT of blood!" And it was only 8 vials! When I looked at all of them laid out, I realized it was still less overall than when I used to give blood, but the tech was funny!

I hope all works out well - keep us up to date.

As for me - Dang I'm busy with work. Doing several projects plus the normal stuff, and we're going into our busier season with benefits enrollment. Haven't had time to visit, so feel very out of touch. Please forgive me!

Been feeling a bit achy and low energy, but after conferring with a coworker who has fibro, and has been extra achy as well, we've decided its the weather. Gotta blame something, I guess!

Today I went to a chocolate cooking class. Am BUZZED on sugar, heavy cream, butter....and CHOCOLATE. :shock: :shock: :D

I think I'll have a pickle for dinner. Can't imagine eating anything of substance..... :wink:

09-29-2008, 11:04 AM
Hatlady..Hi you..Lovely reading you. I enjoy you very much, your words to me, to others.

A pickle? How was it on top of the chocolate?

Chocolate cooking class? Oh yummy..I would be happy just licking the spoon. Confections? Any recipes to share, as each fall before the holiday season I gather new recipes to try.

Times I make them, times I just read the recipes and drool because if I make them, without any intent of sending, giving..I could eat the whole recipe while making, during and after when they are done. No control..

Most recent find Choclolate ButterCups. I even went out and bought the mini tins and mini paper liners last week. Visions of Buttercups dance in my head..

How is Fibro today...lethargic still?

Me, I look like a lychee...fruit ball. Crazy what is going on with my skin., With no nails to scratch, clipped to quick. I am full of bruises where I have scratch with my nail-less stubs into my flesh. I find myself a night scratch with joy and relief and to waken with discomfort skin pain of blue and green lines and finger dots. Bruising. I am a over ripened transparent apple that just feel off a tree..

Hatlady, I 've tried it all...oatmeal...high doses of Clartin, Zyrtec, Benadryl ..neosporin, Calamine....my prescription steroid cream, which just turns my skin a dirty stained brown. Nothing is working...and I am going mad.

It isn't an infection, no lice of any sort...probably just stress but I would think the antihistamines would work. Nothing stops the itch.

It is on my elbows, the whole front of my trunk...hinder, lower back...knees and calves. My lower scalp just about the nape.

They are raised irregular bumps, not red, just itchy..but will bleed when scratch properly...g-r-r-r-..

I have had this rash on my hinder and belly before, though prescribed steroid cream I believe it just went away on its own...as it comes and goes. But now it is so wide spread...

Is there a shot they can give me....should I go to the doctors? Last time I went he said I had a form of eczema ...Nope. It disappeared the next day. Left as fast as it came. This rash isn't like that one though.

I am one scratch away from going insane. :shock:


09-29-2008, 05:21 PM
Noodlemom, I'm so sorry you're getting a 'run-around'. No one wants the diagnosis of lupus, but it's so confusing to be told one then and then told something entirely different later on. What are you to believe? Focus on what makes your symptoms feel better. If I were you, I think I'd want another opinion from a doctor or clinic that can make you feel confident in the diagnosis - whatever it might be. Enjoy your visit with your sisters, Noodlemom.

Oluwa, hows the itch tonight? It's remarkable nobody has been able to figure out what causes this. I hope it runs it's cycle soon. Can the docs do a biopsy on one of the little 'bumps?'

Hatlady, a chocolate cooking class?!?! I'd overdose, I'm sure....I have no willpower against the 'god of chocolate'! Are you still on a sugar high? What a yummy way to spend some quality time... Sorry your fibro is kicking up a fuss. Hope today is better, Hatlady.

09-29-2008, 05:52 PM
Scratching myself raw, Jody.

I am wearing a cat-tight suit thingy I dug out. Like tight thermal cotton body shaper underwear because loose clothing aggravates it as it rubs lightly across my skin. Meow. My husband is enjoying the outfit. It does help a bit. Anything little thing I am grateful for..any relief no matter how small...

I've complained often about this hinder scabby rash, then it went to my belly over the last year, now my elbows and lower back...egads.

I feel so dirty...

I maybe onto something....after days of research. Dermatitis Herpetiformis. Googled... rash elbows and butts was the key words. Looks like it the milder form, the beginning..especially my butt cheeks, elbows and knees...hummm.

I rarely eat wheat products, products with gluten because of its unpleasant side effects....but as of late I have. Maybe I reach my quota of gluten and it is causing this. I always thought I just had an intolerance to wheat products...

I have an appointment with the Roomba this Friday...hopefully he will be able to recognize what it is, refer me onto a dermo or will he just give that turned off, no one is in stare. Humm. I don't think I need a referral. I will ask for a punch out biopsy, even if I have to go through my PCP. Maybe I ought to call him tomorrow to see if I can get in as a walk-in...

Sheeesh if it isn't one thing or another...keeps my mind off of my pear. My pear biopsy, second opinion is Monday..that 5 weeks plus went fast. I still get a weak sick feeling when I thing of them removing my pear...ugh.

I wanted everything taken care of by September's end..I didn't make it. Maybe before I leave for the UP...October's end...

Sleep tight....

09-30-2008, 09:12 AM
I go something like this...

Well, I was able to see my PCP as a walk-in.

He assured me (tried), he stressed, he giggled, he joked, we negotiated and we made a deal if it is indeed eczema and no relieve is provided with the prescribed ammonium lactate lotion my next office visit is free but I would have to pay for the biopsy results.

He was so funny.."I will take a chunk of your skin if you want me to."

The end of the mystery rash? I still think it hasn't been written.

Happy Tuesday....

09-30-2008, 09:23 AM
Good luck Oluwa,

Find out what's hindering your hinder. Magin if it's something as easy as cutting something from your diet!

Head Hugs and keep us posted.

10-01-2008, 07:41 AM
So sorry for your misery Oluwa. Hope relief comes soon.

10-01-2008, 01:41 PM
Hey Cheryl..Hi you, SITC...

Neosporin seems to be providing a little relief this day. Probably because whatever it is, is running its course and is soon to stop tormenting me...or maybe the cream is healing the scratch wounds my nail stubs left behind....

Oh, gee..I just notice a new crop that popped up on my forearm..g-r-r-r-r...

I had seen my dog licking her stitches...humm..idea. I even applied my little bit of saliva I could produced and rubbed some on it. No results.


10-02-2008, 09:39 AM
Oh Oluwa you poor thing!

My day is going well - I did have a verylight dinner after that chocolate class. Not pickles, but giardinara on wheat bread. For those of you not in the Midwest, giardinara (which I might have misspelled) is a pickled mix of jalepenos, carrot, baby corn, celery in vinegar and olive oil. Usually served on things like Italian Beef sandwiches. Since I don't eat meat, I just eat the stuff on salads, bread, whatever.

Helped cut through that choco-cream-butter blop in my stomach just fine.

Oluwa, it sounds like you do have a good doc, treasure the guy. And please, we're all hoping that you'll stop itching NOW!

I'd give you a gentle hug, but you probably don't want anyone to touch you. So... a couple of air kisses?

10-02-2008, 05:31 PM
Oluwa so sorry you're itching and scabby and miserable. I have no advice for you but lots of sympathy for you and your poor skin. Maybe a biopsy is the way to go ...at least an answer one way or the other. Let us know how it goes OK?

Wow a doc who says you don't have to pay next time if this time doesn't work??? Amazing.

Miss your emails. Now that I'm back to civilization where high speed internet is everywhere let's get back in touch.

10-03-2008, 04:52 PM
Hey Razzle....yes, isn't that something..no fee, but I think he meant he will just wave my copay.

I read in another place of you holding your tender little granddaughter..oh, how sweet it must have felt to hold a life, so dear, so small...in my prayers she is...

Hey Hatlady....

Oh yes, I know the Giardiniera vegetable mix, on fresh chewy Italian bread, swiss or provolone cheese. I like a little greasy deli meat now and then. Here, I try to make my own mix as I haven't been able to find it here and usually I add a variety of olives...

I continue to go something like this...

Well, two appointments down.... Rheumba today.. took two hours to be seen...egads. I am still itchy...hummm not a Lupus rash. He thought perhaps a contact rash, dermatitis. Humm, skin contact?#@!

Being itchy is miserable. When I rub alcohol, oh, the horrible burning, the screaming burn brings relief from the itch...really...

Well, I stripped the beds, rewash my daily lounge wear, new soap, rinsed twice..currently drying. See what this evening brings while I sleep. Allergen free clean clothes and Lunesta. My new drug I prescribed for my aches and pains. Seems to be due to my less then a full night sleep, he suggested.

If the crud on my body is still there by Monday, I am going for that chunk removal.

Again, no to steroids. Running my blood for TSH levels.. thyroid test and calcium. He said my blood test have been within range, slightly over but not enough to warrant this fatigue, headache joint pain that I felt was my norm.

I told him if this is my norm I don't think I can live a life like this...each day I feel like I slip a bit further into being a dull, lifeless human being...My energy spurts have been long forgotten. I miss the swirl and skating on my hardwood floors..wheeeeeeee. The last time I felt really good, not the 'norm' normal was last summer....

While I swam I felt free, but once you walk the cement, then into the house I was reminded of the aches...

Went biking for 25 minutes this evening....the neighbors loved my blinking red safety light. Move the body to find energy I hope...

My eye appointment, another 90 minutes of my life I'll never get back, yesterday. I asked the Ophthalmologist why the pain in my eyes and the extreme light sensitivity, natural or artificial. Honestly, I don't know he uttered... I said, well, could you tell me someone who would. He didn't appreciate my humor, maybe because I was mostly serious. I offended him.

I think I offended him and his staff that day...just so tired of waiting. Like as if I have another important engagement. He is off my next year appointment schedule...erase, erase.

I passed the Plaquenil eye exam.

Monday, pear day...I get clammy, a bit of nausea thinking about it..fear. Snap the blinders on, move forward. Mush.

Enjoy the night...keep well I pray for everyone..

10-03-2008, 06:01 PM
Hey Oluwa,

Just wanted to let you know you're in my thoughts. I hope the gall-darn itching is getting better. Don't they often prescribe prednisone for reactions such as that? Maybe a short week long 10 mg would get it under control and gone?

Try not to worry about the gyne apt on Mon. If the "pear" is causing that much grief and pain maybe it's time to bid it adieu. Mine went 10 years ago now and I am better for it. Recovery is sometimes difficult tho (regardless of what the male doc may say) ...although I have heard from others that the new minimally invasion op is a lot easier on you. Just know that you need to do what's best for your whole body and only you know exactly what that is.

Thinking of you a lot.

10-03-2008, 06:10 PM
Oluwa you sound like I do. I can not wait for the return of normal. I am so tired of my never-ending flare. I have the same problem with my eyes for the last few years and I was told that it must be some kind of allery and I also have a floater that I was told would go away within six months, its been two years now. My floater is now my best friend always with me no matter what. I read one day about how Regis had a floater in his eye and how common it is among the elderly I am 26 why do I have it noone knows nor do they care it'll disappear one day, sure it will. Hope you feel better whenever i feel down I come back to this site, which unfortunately is becoming more frequent, but reading about you guys and how much strength you seem to have always helps me and I feel like Yes I can make it through this today. Have you ever tried the Aveeno brand rash cream. I dont remember the exact name of it but it helps my strange breakouts I use it more than suggested but the relief is well worth it. Good Luck

10-04-2008, 03:49 PM
Oluwa, just know that you'll have lots of friends with you in spirit when you see the GYN. You'll know the right decision to make.

Sorry the eye doctor was of no help. Some light sensitivity is natural with age; some is caused by medications. Probably lot's of other reasons, too. Is there a good eye clinic in your area....one that has a number of eye specialists? That may be a better choice for a stubborn problem. They'll likely have seen it all.

There just has to be an answer to this itching!! I hope it's a contact problem and the new soap, allergen free clothes, etc. will do the trick. Here's to a good scratch...but gently!


10-05-2008, 10:31 PM
Hi Oluwa,

I am sorry to hear about your itching. Have you asked if it might be psorasis? I have bumps on my scalp that itch and are only bleed when itched. I have to use a tar shampoo and some other liquid to calm it down. I hate it. I think the RX is Elidel but it comes in a generic (cheaper). It not under control, they turn into white flakey scabs and are considered "plaques." They can become serious very quickly. Stay on top of it. I have read that Plaquenil makes it worse; can't stop taking that.

I will keep you in my thoughts and prayers Monday. When you don't know the answer, seek and ask Him.

I am a little behind on reading on the forum. I have visiting that nice island we created the Island of Denial swinging in the palm tree and enjoying margaritas. Diagnosed with Anti-phospholipid syndrome after several episodes where I felt like Alice in Wonderland. I am praying for you!!

Take care & God Bless,

Faith 8)

10-05-2008, 10:34 PM
Hey Oluwa,

Forgot to post, I don't turn lights on in my house and can't walk outside without dark sunglasses. Talked to opthamologist from UCLA and this is normal for patients that have Lupus. It seems to get worse as time goes by; I don't get it.

Take care,


10-06-2008, 10:03 AM
How is everyone? I am very exhausted and still dealing with a lot of pain.. Just got back from my rheumy. I do in fact have lupus. She is putting me on steroid and plaquenil. Do you know of the side effects and he benefits. What is it supposed to do for me. I got a copy of the lab report. I will have my HubbyMan put them in here somewhere so that someone, I think its Saysusie who is very knowledgeable in deciphering them.


10-06-2008, 01:08 PM
Hey you, everyone...

Wow was this biopsy painful, maybe the last one never did it properly or this one pared my pear too much..humm. The nurse said there were four of us having biopsies today.

During the procedure ..you'll feel a pinch..oh, that wasn't bad I thought. The Lortab worked. Then I screamed, Gawd...sheeesh..what the...Oh, Lord....wow and I thought of every foul word as my toes curled and flexed, while my hands had the death grip on the table. Wondering how I maintained control over my verbiage. $#@*@! The pinch was the numbing agent...the best had yet to come.... I even felt nausea.

After she was done, I assumed she did the procedure on the woman in the room over because I heard.. Oh, gawd..ouch, ouch....oh, oh...no. I prayed for all four us that minute. How life changing this could be for anyone of us, when the results come back...

They said because I hadn't had children nor been dilated that is why it was painful. Not the pinch but the going in with the miners head lamp and gadgets...

I have an appointment to discuss the results on November 6...so long, so far.

I popped another Lortab when I returned to my car...

After 15 minutes it was like it never happened. I went to Dillard's, tried on at least 20 items and left with two Fall jackets, one sweater and slacks in tow. Love a good sale.

I feel like Sybil...many emotions in one day...

My rash seems to drying up like a summer of no rains lake bed...shrinking. Instead of sauving it with antis and lubes. I took three T-shirts and modified them so they fit snug around my trunk, wrapped my elbows with it. And wore my husband's cotton, seamless shorts styled underwear to keep my clothing form rubbing and aggravating it worse. Either it is working, or it is running its course.

My PCP when I saw him last week, specifically said he did no want to put me on steroids, but yet would let me use a whole tube of cream...humm. My skin looks a dirty stained brown now...Actually around my belly button looks like the top of a huge bagel encircling it..The color, brown, and the white...fat. A big circle from side to side and almost to my girls and to my girlie too.


I miss you posting. I wonder often how you are. I paddle over to the Denial Island often too. Sometimes it is for a minute, times it had been all day. Those days... I curl up in bed and watch mindless TV.

I was thinking to purchase the tea tree oil for it...is it coal tar you are using.

Oh no, antiphospholipid syndrome...head hugs...what happens when you have an episode. It just doesn't seem real or right, that there is no cure or a way to stop IT from advancing at least. No matter how big or small our symptoms are times I feel it is just pure torture almost everyday..no wonder we deny, run off with the Queen of Hearts...

The tech at the Ophthalmologist office, when she tried to open my eyes, pushing my lids up, I said, gosh you're hurting me. Felt like she was trying to pop my eyeballs like grapes. She attempted again, not with much care....finally I said forget it for the Glaucoma pressure test. Maybe I am just a big boobie.

My eye pain has subsided a bit, but thank whoever that invented sunglasses. Do you wear them while on the PC too..I do. Times my malar flares while on the PC too. After an hour my nose and cheeks looks like Santa..


Thank you for your thoughtful words...times I think I am making much ado about nothing. Just too many things, small woes to tend with at once. Like last night I had severe sharp pain by the right side, towards my center.. of my rib cage. Lasted about 30 minutes. It happened while I was talking with my sister, a RN who though I was passing a gallstone.

At first when it started I thought oh, no..GERD...an ulcer or gastritis in my duodenum. Pain worse than the biopsy. My sister said it sounded like it was in my gallbladder area. Had any grease today? Nope. Take clear liquids she suggested... I said I gotta go...

My husband was on the PC researching it, I was moaning, doubled over like a roll away cot in the background..he was saying he was taking me to the hospital. I am yelping, no, people have these all the time. He read take Tylenol and clear liquids too. It past but surely the Tylenol couldn't have worked that fast?

Anyone pass a stone? What does it feel like?

I only read Lupus and pancreatitis...Lupus and gallstones, nope...but they pass through the same, common tube..hummm.


Feeling down today...head hug. Chronic illnesses cause so much blues, eh? Always wrestling with one thing or another. Too many changes to contend with....but we all some how find our way. I find helping another helps me too. Finding words, things to uplift another, uplifts me too...

Floaters... the kind that look like little clear jelly fish? I had three since I was a child. I always thought it was normal...squiggles floating about, seeing them at the right angle or in the right bright light. Maybe from having them so long, I don't notice them anymore...

Is your vision hazy, any changes there?

I tried straight up oatmeal milky water..nadda...


Thank you for thinking of me...

Is that minimal evasive surgery the vaginal hysterectomy. I envision being turn inside out. That would definitely be the way to go if I am able to.

How is your granddaughter? I pray for her everyday...

Well this has been me lately....wish the thrills in my life were more than a rash, biopsy and pain...vacation in 16 days. I'll have new material then. Whoohoooo.....

Be well, I pray for everyone..enjoy this day. I am in my new red sweater...


10-06-2008, 03:26 PM
Hi Noodlemom,

The steroids will remove any rashes or join pain. You will suddenly become the energizer bunny rabbit. I was up all night long; couldn't sleep and the bonus is picking up some weight. I cut my food portions in half and just maintained my weight.

The plaquenil should give you a little energy and build up your tolerance to the sun.

I hope you get to feeling better.

Take care,

Faith 8)

10-06-2008, 03:56 PM
Hi Oluwa . . .

I miss you too. I am so sorry to hear about the painful ouch, I won't way it. I remember when a dr did something similar to a dnc with no pain block. I sympasize (foggy here-spell?).

I have been paddling to the Island of Denial between naps. No energy; dreaming of swinging from banana trees, sleeping, running on the sandy beach, sleeping. I am glad to hear I am not the only one.

Tea Tree Oil would be good (I use it on diskoid lesions to fade the scars). It's awesome for your skin. Ask your doc for not Elidel (boy was I tired.) but Mometasone Cream 0.1% (generic for Elocon). I looking at the box so I have it right. Tar shampoo can be found at Target or you can purchase Nizoral also. Either helps with the scalp and face. I let it sit for a couple of minutes.

"Oh no, antiphospholipid syndrome." The answer is Vertigo when standing up or bending over. Possible pulmonary embolism, brain anurism (spelling?) Grrrrrr, I am in another fog. Fingers not communicating with the sleepy brain. No bid deal; God doesn't give us more than we can handle.

My foot turned purple Thursday though I didn't hit it. Primary was out of town. Called Hematologist and they said monitor and if it gets worse head to the ER. No ER, I toughed it out and saw primary today. Vertigo is normal, purple foot is slowly fading and doc says it's vasculitis or in laymens terms a broken capillary or vein due to lupus. Again, normal.

I also asked about hearing since there are times when I talk and one ear is closed. It sounds like I am under water. This is due to allergies and Lupus since Lupus patients have numerous allergies. Interesting.

Your tech sounds WEIRD!! You need to come back to CA. lol. just joking. Do they have you look into the microscope thing (a white bowl and you have to click a mouse when you see the lights blinking while also staring at the red dot?) It's called a field vision test i think. I have to have one every year in between the 6 month checkups.

I don't turn on lights; only low lamps everywhere. I wear sunglasses on the PC too. Wow; I thought I was the only one. My eyes hurt really bad afterward too. I get headaches (from the sun) along with malar flares while on the PC or when it is hot even if I am in the shade. It's because of that darn flourescent light they use in the newer monitors.

It's "nappy poo" time as my daughter says. I am glad you are feeling better. It is good talking with you. Keep wearing the glasses; polarized are better per the opthamologist from UCLA. I would see another opthamologist who specializes in Lupus. Is there anyone out there that you know of besides the one you are seeing?

Take care,

Faith 8) 8) lol (no pun intended) heading for a margarita (in my dreams).

10-06-2008, 05:25 PM
Head hugssss Oluwa

So sorry to ready of your pain biopsy. :( I feel you pain having had a few myself.

Hope there are better days ahead, hugssss.

10-06-2008, 07:37 PM
Hi Oluwa, I see you had that app. today. Sorry it takes so long to get those results. I said a prayer for good results.

I do wonder what the numbing agent is for at times. Never seems to dull any pain to me :lol: . If it is helping, scarey to think of what it would feel like without it. I have my yearly girlie app. in 3 weeks. Always makes me nervous every time. Hope those itchies are going away, said a prayer for that too. Actually been thinking of everyone here and praying for us all better days and less pain :) .

10-07-2008, 06:55 AM
Oluwa, how are you today? I wish you didn't have to wait so long for the results of your biopsy. I just cringed and crossed my legs when I read your description. Yikes, Yikes, Yikes. :shock:

I'm not so sure about your opthomalogist. I have glaucoma and have tests all the time (I have a lot of eye stuff, so go in every 3-6 months.) The test doesn't call for them to hold my eye open at all. I just have to stare into a small, pinpoint of light for just a second (it's very bright...I don't like that part) but I don't have to hold my eye open for it. They also have some other state-of-the-art kind of testing equipment now and are beginning to use that for more thorough tests. You might want to research what's out there in your area.

Hugs to you today...hope you're better.


10-07-2008, 09:46 AM
Oluwa ...ouch the biopsy sounds awful. I thought they were pretty painless ...but I've never had one ...won't either if I have any choice after hearing your adventure.

I always cringe when a doc or medical person says "You might feel some discomfort". In doc language I have translated that to mean "This is going to be excruitiating!"

Some docs think childbirth might cause "some discomfort"!!

Anyway, hope you're having a good day. Try not to worry about the results too much. What will be, will be.

10-08-2008, 02:42 PM
Hey...I know wasn't that biopsy something, not only did it probably scar my pear, it scarred my mind...

I still itch with great refrain. I made another appointment with my PCP tomorrow...my freebie and I will collect him on his word.

Today I thought, you know when I wake up I just never have that stretch, oh it feels so good I'll stay in bed and clock a few more hours. If I do stay in bed it is out of exhaustion or depression..

Anyone every wake up refreshed...

With this Lunesta I feel like my body slept, maybe it is just good rest since I don't have insomnia anymore or wake every few hours wide-eyed, wrestling to fall back asleep. I just don't have that feeling of coming out of hibernation...you know what I mean.

Really with out the numb swab, or was it an injection I wonder what it really feels like...

Managing to raise your pulse yet...seems with too low of blood pressure too, your organs are not getting the blood they need to function probably...

I am glad to see you posting more and you are feeling better...still empty or filling up?


I am having an okay day..minding my don't itch policy. I read you said you had a rash on your lid, I have a spot of it there too...

When the GYN said to take an ibuprofen prior, I mentioned Lortab, she said either would be fine. Cripes the Lortab didn't work...wondering if it took the edge off. My one prior, I just felt a cramping. Wondering who did it right or wrong....

Hey SITC...Guest in town, gone already....still in pain from your cyst? I hope it resolves on its own... Thank you for your hugs with sssss.


Normal, wow? The symptom, the reaction from it is normal..surely not having the term...that sounds so painful with the purple foot. Like blood pooling?

I can't imagine being in a vertigo state with certain movements. I do get dizzy..it is like a wave, that I say out loud.... woooooe. I don't know the cause, I just contributed mine to being me. I've had them for years...thought it was food related, lack of food with my eating disorders, prescribed drugs. I pray for you it isn't a PE or an aneurysm. Headaches lately?

Nope they didn't provide a field test...though I have had those since I have worn glasses since I was eight.

I know no doctors here...either I let my fingers do the walking, ask the grocer clerk, the waitress or take the one my PCP refers. This case I did the walking with my fingers..now I will do the walking with my feet and never return there...


I wanted to cross my legs but her elbows kept them apart...

I've had this glaucoma test prior, but I kept blinking because the tip was literally touching my eyeball. I even commented to her about that..she was insecure, a snot...who thought she knew everything.... probably does except how to perform a glaucoma eye test...

Gee, being in eye care when one says their eye hurts from finger pressure you would think it would be a concern to her, to him....my eyes still hurt...the sockets..maybe it is the muscle that controls the movement of the ball...

I will look for a new one next year....ask my Optometrist if she has a referral...

Tata everyone..enjoy this night. For me, TV....I do enjoy Project Runway. I just love the creativity....

Thank you for all your well wishes...
Hugs all around,

10-08-2008, 05:35 PM
Hi Oluwa, I think I may be filling up a little. I don't feel as empty, somewhat functional. Know what I mean? I do seem to have anger spells lately now. Part of coming back into the swing of things emotionally? I'm not sure, but I don't like myself when I get that way. I hope this passes soon as well. I do enjoy posting again, have no idea why I could not bring myself to do it. Hopefully that's in the past.

Had dental app. today. Maxed out on credit, so have to save and get bill down before the work can be finished :( . Still have missing front tooth. That has to wait until last, do to work involved. So still toothless smile, at least I have temp tray w/ a fake tooth for public.

Hubby's going with me to doc app. next week. He said he's demanding for the real doc to come in, not the NP. He's mad they had me wait to long with the low pulse. Specially since a simple change in med could have fixed it. I did tell them I liked it being a migrain blocker, and hadn't had one in months. That still should be no reason to keep me on it, when the side-effect is a health concern. Even if I wanted to stay on it, they should have said "sorry but we have to change it" or something. I hope I don't get embarressed :oops: , hubby gets loud when upset. I do understand how he feels though, always being pushed off to the NP. Haven't seen real doc since January, pitifull.

Hopefully all will get better soon, I hope. Trying to keep smiling, and not let things get to me so much.

10-09-2008, 10:36 AM
Oluwa, Waking up refreshed? Dont think it is possible. How are you feeling today? Im sorry that you are still itching. I have itching going on here but I cant imagine itching to the extent you do tho. Your poor pear. A few months ago I had my pear cleaned out. Hurt lots. I really liked that percocet they gave me. I have finally stopped having the discharge from the surgery. However I am still having visits from AF. I thought that if I wasnt going to use it that way then getting rid of AF would be great. Thats what they told me anyway

Cheryl, Good to see you hon. Sounds like the mack truck that hit me has hit you also. I am so sorry.

My issues are that I am still in this flare. My pain seems to be getting worse rather then better. The doctor has put me on another steroid pak. I just finished the last one today and will start the new one tomorrow. I am also taking plaquenil now. I know that takes a bit to start working. I am feeling a little light headed at times, getting dizzy yk? My insurance company is gving me trouble with covering my lyrica. I am on 600mg daily. We are paying out of packet now and it is killing is financially. They want me to go on a generic or something, I cant remember the name of it to see if it works. Then I guess if it doesnt work then they will cover lyrica. Thing is, my old doc did on my old ins. did try another drug first and it didnt work which is why he put me on lyrica. Our new ins. is finicky, they didnt pay for my cymbalta either until just a week ago.
I really wish I didnt have to take so many meds and have so many things wrong with me. Why cant I turn in my body for a newer updated version?

Hope ya all are seeing brighter days and able to enjoy the fall weather.

10-09-2008, 01:54 PM
Today I've been chunked and cubed..results from the biopsy for my skin rash will be next week....


Anger is an emotion to say hey I am alive..as long as you don't hurt yourself or anyone is fine, I think. It is an exhausting emotion though...that is why I don't like it either. Affects the spirit, eh? It will pass...as long as you are aware it is there, it will pass. Some people accept it as their norm, apart of their psyche because they are not aware.

Don't be embarrassed of your husbands action, he isn't. I would like a loud voice in my corner..my husband is low keyed in public.

A NP since January..oh that is crazy. From my understanding when you book an appointment they are required to ask if you will accept care from a PA or NP. Maybe that is in certain states, or certain insurances. Or notify you if there has been a change in doctor's care, who.

I would be mad. Head hugs...


I'm doing...still itchy. Eyes ache. Have two stitches in my skin punch out on my back and I have a smile on my face. Life is good...

Let me know if you find the returns department on bodies...

We have to take care of our bodies because where else would we live...

10-09-2008, 07:03 PM
Ouchie, hope the results are good. Keeping fingers crossed and praying it just goes away for you. You are such a trooper, always smiling and going. Insperation to me :D .

Hubby normally is quiet in public, doesn't like to draw attention to himself. He's just never been fond of the NP. Refuses to see her. Says she's too quick on answers, like she knows everything and always has the answer. They do ask, and then tell me theirs no way to see doc or he's gone again. That I can come again later. I can't afford it, and I still get charged with the visit anyways. So might as well see her. Hope it goes well next week. Appointment for all this the day before my birthday. What a present to myself: new bp meds and a girlie exam :shock: . That's life.

Let us know the results as soon as you get a chance, hoping all's good :D .

10-10-2008, 06:57 AM

So whacha doing for your day , birthday next week? Making a homemade cake with homemade ice cream? What is the date of this wonderful day?

Oh, I grimace inside and out many days..but the number of those are less and less each month, especially over the last year...Especially finding you all..WHL. Helps me to put things into perscpective.

Typing helps me to sort out my thoughts. I think while I am typing about how IT affects me, us. I think, hope about tomorrow, even if it is just one day into the future.

I still think and believe I will be able to complete the many things I had intended when I retired early in 1999 which was not retiring because of IT as I didn't know I had it, fully understood it then.

I believe I will be able to take classes for sheer enjoyment....pottery, photography, florist. I just imagine retiring earlier I would be able to fill the creativity side in me. I had envisions for our four walls in our new home...that fell flat, but I still envision, decorating.

I don't think I ever talked about my hopes and dreams of the future here..before. I spoke of children I know...

I would love to adopt. I always felt that within me even when my basket of eggs was full. Not to fill me up, just knowing I have a lot of love to give to children, a heart to feel safe with...a home with rooms that could be theirs to feel safe in, to feel trust, to feel wanted, to feel loved.

With IT I am afraid I would not be able to fulfill that. I sometimes think I would pull them down when they could have had a full wonderful life with someone else who would've adopted them. Someone who would be able to always be there physically and not just there in heart. Maybe I am thinking too much about it...

Wondering if IT and the other cronies would be an issue in adoption. I have never seen it mentioned. I have adoptions packets from China, Russia, Liberia when my husband and I were going through Invitro...

Ah, so many pages in my life still to fill....I believe, I dream, I hope...

Happy Friday....hugs.

10-10-2008, 10:21 AM
Hey Oh, bithdday's on the 16th. I turn 35, feels like 70 at times. Don't know what I'm doing yet. Got 2 kittens as a gift for myself, 1 orange tabby and 1 black/white. They make me smile and are helping me feel better. I so love cats.

Children are great. You can give them physical suppot and needs, even in pain. Mine are the reason I get out of bed and try through the pain. I probably wouldn't even get out of bed if I had no one to get up and care for every day. You would make a great mom. Giving your heart means more than giving yourself physically. I should know. The emotions your parents show you last in memory more than the physical things they have done for you.

If you do look into adotion, try older children. I was in a foster home for 4 years as a young child. The kids I stayed with were great and full of love they wanted to share. They were always so sad, said people only want babies or very tiny kids (we call toddlers). Said no one wants older kids and they would never find new parents. I was glad I had a parent that I would be able to go home to eventually. Felt so sad leaving them, and guilty. Just food for thought if you do ever consider it.

Hows the itchies? Easing up yet? Sure hope so. Boy this feels good posting again. This site and everyone (and you of course :D ) has helped so much. Probably be still in bad shape, not caring. Thought I'd add that saying to my signature I love so much. I remember you saying how it made you smile, so I'd thought I'd share it with everyone. Funny, found it written around the edge of a table I bought from a yard sale. I touch it up every year in white paint for others to see. It makes me feel good every time I read it.


10-10-2008, 02:15 PM
I just popped 60mg of prednisone....hopefully there is relief for my rash in the horizon...60mg for 5 days, 30mg for 5 days, then 20mg for 5 days. I pray it works..this is maddening...

I spoke with my doctor today because even as this day progresses it is getting worse. It is like it heals then moves onto another location. I scratched my thighs black and blue....my skin is hot, inflamed and I am bloated. Not like water retention, just hard and full looking where the rash is at. My husband even said, You're kinda swollen...

I asked my PCP, do you think it is scabies...nope. Can you prescribe the scabies treatment, Permethrin, just in case. Nope. I asked any cases of scabies in the area. Nope. My skin biopsy result in. Nope.

So, this is me today....wondering will I look like a pumpkin head for my vacation in 12 days...

My body should feel almost IT free too...free of joint pain, a bonus.

I feel like rubbing my body on the bark of a tree....

10-10-2008, 09:25 PM
Poor Oh, I feel horrible for you. Trust me when I say you do not want the scabies medication for the skin. My oldest son used to get rashes from a food allergy (thankfully out grew the allergy). A doc prescribe a scabies med because the rash itched so bad. No warning about use. Well I put it on and he SCREAMED in agony. I was so up set. Hubby and I read every fine print and found at bottom of pamplet that came with it that it stated "do not use on open sores and broken skin". Doc never told us and he seen the sores and broken skin from his scratching, he should have said something. I use to grind instant oatmeal in the tub of hot water, was soothing. Careful, it makes the tub slippery.

Hope tomorrow's a better day. Rest easy dear friend. Glad the joints are being kind. Hope your better by your vacation. Where you going?

10-11-2008, 01:57 AM
Hey cheryl_v

Hubby's birthday is on the 16th. He just dropped a big big HINT what he would like for his birthday :lol:

I was gettning concerned cause he's got every power tool known to man and that's where most of his interests lay.

Hubby is turning 49, he hasn't said to much but I think the fact that he's sucking up to the big 50 is getting on his nerves.

Hope you have a great birthday next week :)

10-12-2008, 07:36 AM
Oluwa, I itch just thinking about what you're going through. There just HAS to be an answer out there. Allergy? Contact with something? Reaction to medication? Ouch, ouch, ouch. Softest of hugs to you.

Do warm baths help, with baking soda? (My mom's favorite remedy for itching.) Not a solution - but soothing? I know there are lots of home remedies for rashes and itching. I expect you've tried it all, huh?

I hope you have some relief before your UP vacation - travel safely and itch-free!


10-12-2008, 12:43 PM
OK, I see my post never made it. Guess I'll try again.

Hi SITC, happy birthday to hubby. My hubby too has so many power tools. This year got him a gift card to Best Buy. He loved it. Most guys love electronics as much as tools. Maybe a book with projects he can do with the tools. Seen hubby looking at one. Thinking of that for next year. Hope he has a good day, cool its on the 16th :D .

Hi Oh, hows the itchies? Hope gone by vacation. Are you home remedy out yet? I know I was when son had his rashes. Jody brought up good point, allergy? My son used to have a food allergy that caused such itchy rashes. Just a thought :) .

10-12-2008, 12:50 PM

I going to the UP Upper Peninsula of Michigan...and will be on one of the peninsula on the peninsula which will be on Lake Michigan side..

Oh, that burn must have been awful for your son...sheesh even ammonium lactate was burning. But in an odd way the burn gave me itch relief. A huge distraction for several minutes.

I wouldn't have even thought of it till it burned my skin if I was prescribed it. Thankfully, which I am so grateful the scareyoids are working. Alleluia. I don't understand why they just said no to them, both my PCP and RheumBA. Went through weeks of torment, tearing up my skin. I till don't know what it is from, the cause...

I do love you signature..To the world you may be just one person, but to one person you may be the world. They say it was said by nick Miller. it is so true.

Sometimes we are the world to someone that we may not even realize it too. So we, people should always be respectful, give praise say positive things to the young, to everyone. One sentence can mean the world even from a stranger. I know, I remember...

Hey Jody...

Relief is on the way...yeah! Seems prednisone is the answer, but 60mg seems so high, eh? Well, it had spread to my thighs. I simply had no control over scratching the legs or my chest. I looked a mess so I had to call the doctor and say help me Friday. It was getting out of control...

It's healing it's drying...as it dries it itches, nothing that a little normal lube doesn't stop. I must say the itch, and not in a good way though took my thoughts away from my other woes.

Can we get these silly rash, horrendous rashes because of Lupus? When my RheumBA said it wasn't Lupus related.. I am wondering does he mean, not like the malar, discoid. Aren't we more predisposed to the "crud" has I call it..hive, rashes or is it just to skin diseases like psoriasis, scleroderma and etc...

Rashes...such a minor think to complain about....

Ten more days....family, ATVing...UP eats....new hair do...I am so excited.

Happy Sunday,

10-12-2008, 08:19 PM
Hi Oh, your vacation sounds great. I could only imagine how excited you are. Yes that med did burn him so, he was only 2 at the time. Called his pediatrician and complained, he was promptly removed as his dermatologist and given a new one.

I remember how that phrase made you feel :D , its why I wanted to share it. I want others to feel important. To know how much they are helping others, even if they don't actually know it. Just like you, my most helpful friend. I haven't had friends in so long, then I found this place. Everyone saying such kind and thoughtful things, just to help. I didn't realize I made friends, until I hit bottom little while ago. Dumby me realized I had friends all along, I didn't need to see them to know I had them. Everyone stepping in to let me know they were there, brought joyful tears :D .

Enjoy yourself, relax and fill in all details when you get back. 10 more days, yeah!!

10-13-2008, 10:13 AM
I forgot, thanks Oh for telling me the author to my favorite phrase :D .

10-13-2008, 10:19 AM
Oluwa, your vacation plans sound great! I love the UP.

On adoption - my sister was adopted into our family when she was 8 and I was 12. So as Cheryl says, looking for an older child can be a wonderful thing. Children need love, they need a home. Even if you can't be the one to run and play soccer with them, you can still be a loving Mother.

Hope the itching will stop - you've gone through the mill with that!

Sleep is a wonderful thing. Saturday morning I woke up a bit late and felt so wonderful. Rested, relaxed, energized.

This morning? Well, went to bed on time last night (about 8:30). Was up at 11 for about 45 minutes. Up at 1 for 30 minutes. Up at 2:30 for a good hour or so. When the 5 a.m. alarm went off I reset it for 6. Almost didn't get up. I just said my "inner rooster" got the best of me. sigh....

Tomorrow will be a better day. Right? I WILL sleep tonight! 8)

10-13-2008, 01:44 PM
I do hope you get some sleep tonight hatlady. I know how you feel. Makes it so hard to get up. I still wonder how I make myself get up at times. Thankfully the more I get moving around, the faster the rough morning pain and stiffness eases to tolerable. I do try to keep that in mind. Hard to think of it when you first get up though. Definetly easier said than done :lol: .

10-13-2008, 01:59 PM
Yes, moving around makes such a difference! For me, warmth and humidity can help as well....some mornings I creak until I've been in the shower for....way too long... :roll: I will even do some gentle slow stretches in the shower - it helps un-lock the joints and muscles. The bathroom gets clouds of steam..... and I don't even want to THINK about the water or the gas bill!

I plan on going home as soon as the day's over, no staying late tonight! Then a light dinner, collapse into my recliner, and go to bed early.

10-13-2008, 07:52 PM
Hi hatlady, I so wish I could shower in the morning. Hubby gets up before me and showers, then the kids, then day-care kids start showing up, sigh :( . Oh well, but I do stretch in the morning and walk around slowly until no more hobbling on my feet. Once I get going, its not so bad. Boy the motivation it takes.

My mum and mum-in-law love having someone who can relate to the pain they have. I get aggrivated though because I'm 35 and they're both 58. I mean no disrespect, but unfair on me to have the same issues. Does that sound mean? I don't mind listening, but annoyed being labeled arthritis buddy. Not the way I plan on relating with them, you know? Some times I wounder if I feel more than they do. Seems so many of us have arthritis way before our time.

Thanks for the input hatlady on your sis. I remember to well those kids. All they wanted was love. Older kids are just as good as younger, at least I believe. Maybe demands are not so strict on older kids, if still concidering Oh. Also as hatlady says, running with them is not what makes a good mom. Good parents are the ones who stop to listen, not always doing and going. If you chose too, good luck. If you chose not, then that's ok too. You will always be a mother to many of us here, wether you know it or not. Regaurdless of our ages compared to yours, you are a good person.

By the way, hows the itchies? I so hope improving :) .

10-16-2008, 06:57 AM
Happy Birthday to you...Happy Birthday to you...
Happy Birthday Dear CV....
Happiest Birthday to you....

Party time....all night long!

How are you this day, Birthday Girl...

Happy to read your BP is under control... higher. What an absurd thing for the NP to mumble, she should have stopped. Hummm...how they always warn us not to stop. Yes, no, no, yes. Sound like your NP has a lack of responsibility problem...

You're welcome on the Nick Miller...I could be wrong, as it has been attributed to no one, then everyone...

I've been on and off lately through the forum..making a post here, over there, a way to say I am here, but I have been lost in my thoughts. Out in the corn, bleak. I suspect it is due to prescriptions combining Lunesta and Prednisone...and both vying for... what do we do with her sleep. Lunesta, sleep. Scaroids..no. :

And the side effects of Lunesta and Prednisone..I am so sensitive to behavioral side effects. I am thankful that I am aware of that, otherwise...plop in the hole with no flashlight. Being aware, I know it will pass. Tapering the dose already. So, I've been riding it out my mindless task and staring at the TV under the covers...and I've been so cold to the bone, even in this 80 degree weather. The drugs.

If the Prednisone wasn't doing wonders for my rash, almost gone...just the residue ash from the drying scratch off bumps...and the thinning and chalking the steroid creams do to skin..but I am keeping it lubed with Keri.

You are so sweet to say such kind words about me. I think the same of you, so motherly, from experience, and from what we would have like to have while growing up. You always have friends here....modern technology..just a few strokes of the fingertips away. We learn to converse, in a way only in cyberspace... together...and express our friendship. All so unique...but real...

Counting today, 7 days..UP here we come...

Carving pumpkins already?

Happy Birthday Cheryl..enjoy your day...
Hugs full of love,

10-16-2008, 11:19 AM
Thanks Oh, your sweet! Friends are a great gift, specially the ones here. You have a good friend here too.

Had a dentist appointment this morning. Surprise on me, I got a temp bridge in. I can smile, no missing tooth with chipped ones around. I'm so happy, I have front teeth :D . Thanks again to DebbieE for telling me of the Capital One Dental Card. I would still be in the depressed over that. The info was so helpful, I passed it to family and neighbors. Although my teeth were so bad, it cost $6,500 to fix and 4yrs to pay off. Oh well, had to be done. One more visit for permanent teeth in 2wks, but thats already been paid. So happy.

7 more days, I'm so excited for you. Has the rash eased? Bet it will be awesome.

I can't help but say it again, I CAN SMILE!!!! My tooth broke about 10 months ago. Long time waiting.

10-16-2008, 02:25 PM
Hi ladies,
It was your birthday and I missed it. Im sorry. Happy Happy Birthday Cheryl!!! :wink:

Hows every little thing with ya'll?

Im fighting the crud. My son had is for so long and I fought really hard but in the end it won. Stuffy nose, cough, headache, cold sweats, hot sweats. What I want to know is how can my feet feel like ice and Im sweating up top?

I am on another round steroid and plaquenil now. Also lyrica is no more but am on gabapenten. I think that may be working. My bood sugars had been really wonky for a couple of days. The steroid is supposed to elevate them and yet I was having lows. I woner if somehow I screwed up on my insulin or if the plaquenil or gabapenten has any effect on blood sugars?

Because I have been feeling so awful I am letting my kids watch movies.....alot.
Hope I get better soon before their brains turn to mush.

HubbyMan and I have taken to watching the show called Numb3rs. I found out the other night when we watched last seasons last show that my favorite character Megan Reeves left the show. She is a woman FBI agent. Im sad.

Leaves are turning, weather is crisper It rained last night.....and I forgot the puppy out in the rain. She was soaked when my son brought her in. Poor puppy...mommy brain fog.

Well not much else new here. Sorry I dont get on here too much anymore. I just dont have what it takes anymore to keep putting one foot in front of the other anymore.
Kinda a vegetative state.


10-16-2008, 07:34 PM
You didn't miss it. Thanks Kasey, your sweet :D . I do hope you feel better soon, poor thing.

New bp med is causing dry cough. Its the same one hubby took that made him cough. I didn't realize that until he said something. Back tomorrow to tell them I want a new bp med, again. That med caused hubby to cough all night, neither of us got sleep. I'm not going thru that with myself too. Annoying, today was first day taking it. Hubby said it took 5 months to cause his cough. Doc said some, not many, get the cough right away. Unlucky me, another med a waste of money I can't afford :x . Hubby said he'll call tomorrow and deal with NP, thank goodness. I don't think I could do that again.

10-17-2008, 12:11 PM
Hi you, Hatlady...

Yes, the UP is great...we will have a great time. Nothing is like home and that is home, family, where I was reared till a teen...before moving to Seattle, which is my home too. I think of the UP like comfort food and Seattle as life, energy, creativity...

The itching has stopped, yeah..thanks to the mega dose of Prednisone. Just ashy like flour on a paper bag now.

Your previous nights sound like mine since being both on the eye opening steroid and the snoozer Lunesta. Wow, and that Lunesta leaves such a bitter taste. Water tastes like lickin' pennies. Hope your nights have been better since your post...

My packages for adoption have begun to arrive. Two yesterday, one today..I will take a look-n-see when I get back from our vacation what the criteria is. My spirit feels light today like satin ballerina slippers, so I don't want it to fall flat like steel toed shoes.

Off to twirl about with my new Kenmore Canister....Willie (Roomba) required too much attention. Gosh, has Lupus made me lazy or impatient?

Enjoy the weekend...

10-17-2008, 05:58 PM
Hi Kasey..

Sending you get well hugs...squeeze...


10-19-2008, 07:40 AM
Hey CV...

Smile, smile...smile. Just a tilt of our outer corners can change our whole day, our whole perspective about ourselves. I am so happy Debbie found here way to you..meant to be, meant to be...

Money well spent, eh...

I've received several of my adoption package...seeing what our options are.

I was wondering in my mind...here I collect, save, things about me, my memories, my life, my words,..snaps, drawing from when I was 7, painting, dried flowers, paper clippings, love letters..you know the junk we love... Why? Who will read me, know me when I am gone. My history...without children who do you share it with...

It may sound bleak, but my thoughts went further, deeper than that..in short, to a sense of what family, passing down generations of life is. I felt the purpose even with my box of scraps.

Yes, the rash came and left its mark. My skin feels like parchment paper. Probably from so much steroid cream, then the oral ones too. Five more days to taper completely off.

Departing on the 22nd...getting a little nervous, wondering if we made the right decision to go by car and will I be intact upon arrival? I've been keeping such a low profile for about two years, only venturing to Florida for holidays...a six hour trip, so this one, being 20 hours one way and for two weeks. Even being on Prednisone, my face cheeks have been getting redder.

I speak about my scabby hinder cheeks, wanted to ensure you knew which ones. Yep, the malar and I wonder why the sunburned look..hummm.

It is a lovely Autumn day in SC how about there? How's your Sunday?

Be well, Cheryl..Hugs.

10-19-2008, 08:36 AM
Hugs Oluwa,

Sorry you poor hinder is suffering.

My face has been flushed, hot and tender the last couple of days. Today as well. :oops:

Rest of me is freezing cold...good thing I dont have a hot tub. Dont think I would come out till spring.

I'd have to change my nic to sits_inthe_boilingpot.

Hope you are having a good day :)

10-19-2008, 12:03 PM
Hugging you back....SITC.. Are you in a midst of a flare or flaring more in the flare.

I've been a bit chilled myself. The house reads 73 and my temperature reads 97.4. Chilly from morning till about midway through my nighttime sleep, then the hot flashes rage on.

The hot flashes were dormant for a bit but that bout of rash brought them back...

I would love to turn the heat on by day, but at o'dark thirty I am turning the A/C on...

Oh, my hinder suffers no more...the wounds from itching, almost gone..

Enjoy the rest of the day...

10-19-2008, 12:09 PM
Pats ya on da hinder, glad to hear it gal. My temp is about 96 I cant get it up to normal :lol:

I walk around wrapped in a blanket, which reminds me I NEED new slippers, fuzzy warmy ones.

10-19-2008, 04:12 PM
Oluwa, are you all packed? Lots of comfort items for the car: travel pillow, fuzzy blankets, warm socks, good snacks. We used to do long car trips frequently - I loved it - now, not so much. Give yourself lots of little stop-and-check-the scenery stops so you can get up and stretch.

Everyone wants to leave their mark, I think - a legacy of some kind - for children or for others who follow. You are a special lady, Oluwa....you have already left your imprint on lots of people...just ask everyone here!


10-20-2008, 04:05 AM
Hi Oh, I have to agree with Jody. You have left your mark with me too. I shall remember you for the rest of my life time, as many others will agree. I think you have one of the biggest marks here. I said a prayer for the adoption to go well for you, in your favor so to speak.

Almost trip time, yeah. Take breaks and walk when you can. Long sittings seem to be worse than physical labor on our bodies at times.

Yesterday was a lovely, comfy day. Today's suppose to be the same. My temp's always 95-96. One minute I'm freezing looking for my sweater, next I'm burning up and peeling off extra clothes. So annoying.

Waiting on new bp med, again. The new one sent me into a coughing frinzy. Even though the nurse and np kept swearing impossible to happen on first day of taking the med. No one seems to remember I react fast to meds. What was that you take, Q10? Considering it, even if more expensive than bp med.

Have a good monday everyone. I got 2 new day-care kids starting (replacing ones that left few weeks ago). Wish me luck :D .

10-20-2008, 07:15 AM
Such kind words, thank you two, CV and Jody. I feel the same about you and everyone here....

Now would that mark be my carbon footprints? :lol: My husband and I footprints are 10.91 tons the other site says 33 for two. They say the average for one American is 20.4 and the other site per two is 53 tons....humm, we lead a dull life. No action.

Before, being ill I would guesstimate I would have been at the average from living..the secondary carbon print.

Calculate ...what's yours at...


Yeah, go green....

I am packed, probably a bit too cautious, many emergency packed pill boxes for the what ifs..muscle pain, rash, headache, insomnia, anxiety, restless legs...as our main holed up area is the condo, but then we will find our way to my Dads, sister and brother with an over night bag in tow. I have pills for the car, the purse, the condo, the over night bag....

Yep, too cautious, eh? Or afraid of getting ill while there. I feel very nervous....I fear a flare and I will fizzle..fear of what has yet come. Fear of lack of understanding ..fear of laying in bed....tired, fatigued...leads to the wrong perception...ah, I am making much ado about nothing...

Then, I am so excited, the excitement puts those anxieties up on the shelf where they need to be, though I feel a small sensation in my belly.

Sister, Auntie....childhood friends..the UP eats. Four wheeling...sauna, pan fried whitefish, Cribbage...cold starry nights on the peninsula..Ooolala.

I have pillows, binkies, Thermal Heat Therapy pads...DVD player, magazines, apples, nuts, roasting a beef roast for sandwiches...bag of Kisses..hospital stockings (compression knee hi-s)....ice water bottle. If I listed all my just in cases, one would think I was crazy...

Cheryl.....CoQ10..for fatigue, but I stopped. I felt no different after several months. If you do decide, sometimes the pharmacy sells it two for one. Runs about $35.00 per month..200mg each day.

You don't need luck on the children...you have all the love, kindness, nurturing, guidance to give...blessed.

Big hugs....squueeze....

10-20-2008, 09:50 AM
Thanks Oh. Had a new parent pop in for "quick" interview, 1 1/2 hr long. She brought a page full of questions, wow :shock: . I think I did well though, she'll call in a week to let me know. The new kids are good, little boy's quiet and the girl's roudy.

You sound very ready, you pack the way I do :lol: . Although I only use about half what I pack, but still no regrets. Once in awhile I actually use almost everything. The comfort of having all I pack makes me feel easier on leaving. Good luck and have fun :D .

10-20-2008, 03:40 PM
Oluwa, I love your new avatar! I can see you and your hubby heading up the road to the UP. I can almost hear the music coming from the car...and is that Pookie and Riley Mildred I see in the back window? I just know you're going to have a wonderful, memorable trip. Being extra prepared just eases the stress - I pack like that, too. Much harder to do when you fly (next time I fly, I'm going to try to ship my bag ahead of time.) Hugs, hugs, hugs for your journey!


10-21-2008, 05:35 AM
One more day Oh. Have fun, relax and enjoy yourself. Make beautiful memories, laugh and let go. We'll be thinking of you and praying for your safe return. YEAH!! I haven't been on a trip even close like this one your doing, I'm as excited as if it was me :lol: . Fill us in on your adventure when you return, I love hearing of people's trips. Once again, HAVE FUN :D .

10-21-2008, 02:33 PM
Less than 20 hours we will be on the road, CV....thank you for the prayers. We need all the ones we can get. I say prayers for everyone, and do some special shouts outs almost every night..well except the nights when Lunesta just sneaks up on me. Slam, eyes shut like a warehouse door....

That was a 'quick' interview...wanting to know who is caring for their most precious treasure. I can only imagine the thoughts that would be in a parents.

I will have oodles of fun...the quiver in my belly has departed with each deep breathe....relax...inhale...

Hugging you back..Thank you Jody....looks like were running over road turtles......wheeehoo...ah---ahh---ahhh...bum, bum. I am excited. I just love my Auntie, and my family so much.

My brother is retiring in 2 years and he is having a house built on one of my Dad's 40's...can wait to see his new digs.

Called my Auntie to say I will be picking her up for Friday's Fish Frys and for church this Sunday. Sad since she had her 'stroke', but not really one, she just slumps over and stops, like someone pulled the plug two times..she hasn't driven. She hasn't had one for 6 months..so she is able to drive legally, but I think she is scared.

So, she misses a few Sundays...but not this coming one. I love her to pieces. Just thinking about her..I see love, aura.. in all its soft yellows, warm orange reds...with her brown eyes...

She is my Mum's only living sibling, she is 87. I want her to write out a few Finnish Prayers for me...I know them orally but not by reading...

Mita Kulu...means what's happening, in Finnish.

Oh, my doctors I missed his called this afternoon and he was gone for the day, his nurse said the biopsy showed just a dermatitis. I asked that he call me tomorrow, wondering will it return once the steroids are stopped and what could be the cause. Doesn't it have to be from something, some irritant or do they just happen...hummm? Why did it keep spreading...I will ask too. Least it isn't scabies. :shock: Or is it..with that I would be done with it...

Oh, too...he did waive the charge for when I went to see him again. I thought he would charge my insurance and forgo my copay..nope, no charge to either. Just the biopsy..$6.00 co-insurance. He was true to his word....admiration to him from me.

See you guys..Buh Bye...
Hugs full of love to you and everyone....

10-28-2008, 08:08 AM
I'm sorry I have been out of touch for awhile. With the long and exhausting Mayo visit and then finishing up my testing here I've been a bit over whelmed with everything. I want to thank everyone for their kind words and prayers as they did work. I do not have autoimmune hepatits nor do I have lupus, but I do have fibro so I can still hang out :P
I have fatty liver disease, hyperparathyroidism, Addison's disease, fibro, and an IBD. I'm finishing up testing here with a stimulation test to confirm the Addison's, ultrasound on my neck to look for a tumor on my parathyroid glands, bone density to make sure I don't already have osteoporosis, and scopes to determine which autoimmune disease is in my digestive tract and where.

The bulk of my symptoms are being caused by the hyperparathyroidism. Hair loss, high blood pressure, ect. The joint pain is from the Addison's which is causing bursitius in all my joints. The fatigue and nausea are over lapping symptoms of several of the things so they can't determine which one is causing them to be the worst. They have started treatment of the fibro, fatty liver, and put me on high dosages of vitamin D to try to stablize the parathyroid. If I don't have a tumor on it then it is likely also being caused by autoimmune which would give me a diagnosis of autoimmune polyglandular syndrom which is a herditary disease. They have decided to hold off on treating the rest while we continue to sort it all out. Treatment of the Addison's will also treat everything else and as they are a research hospital they want to know for sure if the parathyroid problem is related as well as what exactly has been causing what symptom. So unfortunatly I have to continue in pain for a bit longer but they did teach me some techniques on how better to manage it and it seems to be helping. One of them is a regular massage (poor me). I also need to get cortisone shots in my hips as that and my feet are where the bursitus is the worst.

Oluwa- I hate that I missed wishing you much fun and laughter on your trip! I will be keeping you in my prayers that IT keeps at bay while you are away so you can enjoy yourself. I'm very glad they finally cleared up that rash. Sitting for that amount of time with it would not have been pleasent. I think adoption is a wonderful thing! I was never blessed with a little girl that I wanted so badly so when I had to have my "baby making machine removed and a play ground put in" (hubby's take on the situation), we decided that once we are more financially stable and the boys are a bit older, we will look into adopting one.

Cheryl- So sorry it is taking so long to get all that dental stuff taken care of. If I could I would gladly help you out there. I know how frustrating it can be to want your smile back. And happy very belated birthday!

Noddle- I hope your family is getting over the crud. My little one just got up this morning with it and my mother has been suffering for a couple of weeks with it.

Gentle hugs and wishing everyone a pain free day!

10-28-2008, 02:05 PM
My my my DebbieE, what a busy girl you have been. Sorry you have to deal with the pain longer. Hopefully not too much longer. Sounds like a good place you've been going too. Massage, I'll take a script for that :lol: , many!

I just wanted to thank you so much for telling me about the dental card plans the credit cards have. I thought I was stuck until I could get my regular credit card amount down. Now I have front teeth :D !! Granted temps, but the real deal next week. I got the temps on my birthday, unexpected surprise. It took long because had to postpone 2 months due to jaw pain. If you hadn't mentioned the card plan, I would probably be down in the dumps. Still avoiding people and places as much as possible. Because of you, I smile big and loving it :D . Thank You so much, God Bless You!!

10-29-2008, 12:17 PM
For Oluwa, in case you pop in for some crazy reason.

:silly: HOPE YOUR HAVING FUN!!!!!!

11-04-2008, 08:05 PM
Say..’Ya to da UP….Someplace special’..their local motto.
Well, I came back saying a lot of yeps, u-sta (used to), pop (soda), melky for milk and ehs now at the end of every sentence.

Missed the changing of the seasons on the way up, but on the way back, through Kentucky I felt I was a part of a God’s autumn bouquet as we zigzagged through the Smokey Mountains. Right dab in the middle of the rolling foothills of crimson reds, pumpkin oranges, lemon-limes. Only if my camera could have captured what I felt. I, my spirit was literally content….I was a part of the living landscape…

Prior to leaving, 10 minutes to noon my doctor returned my call…biopsy revealed I have spongiotic eczema. The scuz returned when I came off the steroids, called the doc while in the UP, refilled so, I could enjoy my holiday without the itch. Now that I am at home…trial and error to find out what ignites it. Norwegian Neutrogena Hand Cream calms the itch….works! A tid bit from my Auntie, as she has eczema, chapped hands…all her life. So did my other Auntie, her sister who passed.

I got hugs, love galore…tight, squeezes while running their hands up and down my weary, sore muscles in my back…awwwww. It felt so good….more, more, I asked and more, more I got. Family knows how to love…

I dined on Fried Whitefish, smoked whitefish, broiled Walleye….drank homemade tomato, jalapeño juice with beer…chewed on homemade Deer Jerky and Deer Slim Jims. And devoured pasties filled with rutabagas, spuds, carrots and a cream sauce…and munched on hand dipped fried jumbo shrimp. High calorie, high fat diet of the UP, but I enjoyed every morsel, every bite. I’ll worry about my figure next week.

I gain weight so easily, especially from steroids. I gained eight pounds since October 10. Food, probably...steroids, yep. I look really bloated and puffy, especially in the face and ‘cankles’…(SITC…lol) Tree trunks for legs.

My nose ulcer came with for the vacation and didn’t completely leave until the ride home. Wondering why the steroids didn’t send it packing elsewhere…also while there and I still do..I have a different type of chest pain. Maybe it is from Gerdie….but it seemed to correlate with being tired and when I felt a bit overwhelmed as I didn’t always feel so great there. Or maybe it was from the cold fall air and dry homestead heat…drying out my lungs. Still aches.

It was cold, 20’s and 30’s by night….by day 40’s …50’s. A wool coat barely broke the freeze in my body. And the cold lake wind….ouch. I was soooo glad I packed my Alpaca hat and deerskin gloves.

Made my sister and the twins from scratch a dark chocolate cake with dark chocolate butter frosting for their birthday. Their theatre request..Eagle Eye. I gave it 3 popcorns out of 5. Imagine popcorn and soda refills for only 50 cents…we refilled…

Also chopped, diced, sliced and made her Giardiniera vegetable blend and another veggie Italian marinate for her….loves it with bread, on lettuce, by itself. She is addicted to vinegar.

Played Wii, Bowling and won every game. I am a natural. The men felt so defeated. I felt like I was in a Hologram. Even won one game of Rummy Cube…can be an intense game; especially with the Lupus airhead… remembering 12 moves just to purge your hand of one tile. Every year we buy a new board game…this one, Rummy Cube is on my list for 2008.

Fed the deer fresh sugar beets, carrots and dry corn…banged the bottom of the can, sounding.. hey, come and get it. I must have looked silly beating the bottom, as I think my Dad was pulling my leg. Deer coming to eat on a dinner bell..hummm. But the deer do come right up to his house..twin fawns, a couple of does, young males…and a flock of wild turkeys, dinner bell or not.

My Dad has 240 acres …tore up the trails on the ATVs. Drove fast, rode hard. When I got off, after being a passenger, legs around my brother, who, well isn’t slim. I was bow-legged as if I dismounted a horse. Wow, it did a number on my inflamed joints, but nothing that a little pill couldn’t resolve. My Dad deeded me 40 acres years ago, my siblings also in another county, but close to his acreage… I didn’t have time to walk it, nor the stamina..my ankles were feeling a bit weak. Walking my brothers acreage I fell, ankle went limp, weak, inflamed…in slow motion, plop..there I was in a heap. My brother thought I was a stunt person…didn’t believe I just toppled as I was laying down as if I was place. I was too pooped to try and break my fall. A little jarring..but again nothing that a little pill couldn’t get rid of…

I baked cookies with my Auntie...she gave me a wool red vest sweater she had made for her sister, my Aunt decades ago, at least three, maybe four. Date, year unknown...so old the box and tissue paper were yellow. It was never worn. I will treasure it like my Auntie, who she made it for. Such a special gift for me.

My sister colored my hair and chopped off six inches…now it doesn’t look like an experiment that went awry. Introduced me to the ColoreScience’s new line of face care products; they are not just a makeup line anymore. Wow, what a great find, especially for my malar rash and aging skin…they have new tinted face lotion, which I would recommend for guys malar rash too. Expensive, but having a sister...I got it at cost. My face skin looks so even, fresh and plump, a tinge of pink but the rest of me is like wax paper, well, the gut, hinder and back. Perspiration I know aggravates the spongiotic eczema.

The drive, ride wasn’t bad…though the last three hours each way I got restless. I even drove a total of 14 hours out of 40..woohooo. I owe that freedom, pleasure to prednisone. My finger joints and wrist faired okay while gripping the steering wheel, not without pain. I was so happy I brought my animals with…they travel so well. It would have pained me the whole trip had I left them behind.

Returned home with 4 quart jars of canned tomato jalapeño juice, 2 jars of canned smoked whitefish…bag of deer jerky and two whole fresh smoke whitefish, an antique shoe shine box from my other brother and old coins for my collection….

I survived, the drive, the food, the itch….when I arrived home I slept for almost 12 hours..only once last night eyes wide open and that was at 4:30AM. I only used the Lunesta three nights while away….always great to have one less drug in our bodies. Hoping I fair just as well tonight…and the tired weak, achey feeling will dissipate. Maybe it is just exhaustion or in a moderate flair without my Hawaiian Orchid OPI nail polish…

I thought of you all, prayed for you too. Thought about life with Lupus..as I laid back in the seat, reclined looking out at the stars as we drove. Even if I can’t do all the things I did before Lupus knock louder and louder, before my surgeries I am still me, Oluwa, sister, auntie, wife and daughter. And you too, are mothers, fathers, sons, sisters, husbands…. Our disease doesn’t change that. Being Oluwa is my heart, my values, my morals and not by the things I can or cannot do. I have to keep reminding myself of that, knowing that I am better equipped not to fall into the hole. Preventing.

I know life will never be the same living with a disease, but it is still a life worth living. There is so much living in this life for me to do…more than what I ‘u-sta’ do. Not having a disease I think we become comfortable, habitual in our daily lives, with the disease we can explore who we are...indulge in different activities we would never do otherwise…reading travel books…drawing, sewing, patio gardening, faux finishes on furniture, scrapbooking, learning a different language, set up a store on ebay….teach Sunday school…volunteer one day a week at a hospital…transcript medical records, let your mind run with ideas…. I know I have to rethink, redo my world. One moment at a time…my mind is churning.

Time to create a reserve…making a deposit, replenish the spoons….rest. I’m pooped..going to go hibernate for a few days.... Night.

I’ve missed you all….
Hugs full of love…

11-05-2008, 06:24 AM
Oluwa!!!!!! I sent you an email and then saw your post... A wonderful trip...what a day-brightener to read about it. I could almost see the UP, your family's land, taste the good food, hear the laughter. So glad you had a memorable trip and managed to keep IT from tripping you up too much. You deserved the break! Thanks for sharing the memories. It's inspirational to me to hear how you gathered all the joy from that experience, and I love the reminder that we are still "US" no matter what lupus takes away. Thanks for that, sweet Oluwa. Welcome home.....


11-05-2008, 06:51 AM
It's great to have you back Oluwa! Sounds like you had a great time. And all that talk about the food. It all sounds good to me! And dark chocolate cake with that dark choc/butter frosting is one of my favorites. I know what you mean about the beauty of Kentucky. I was stationed at Fort Knox for a couple of years, and I absolutely love the bluegrass state. And you got to get out and ride some ATV's too. Very fun stuff. Welcome back, we missed you!


11-05-2008, 07:30 AM
Welcome home Oh, so glad you had a wonderful time. Thanks for sharing, love the details. Could picture it while reading it all. So glad your pets got to go with you. It's much easier to relax without worrying over them. My 2 kitties, Joey(orange marmalade) and Luke(black/white) are purring next to me as I type. Who'd thought 3mth old kitties could pur so loud :shock: , can't hear anything around me :lol: . How did hubby like it? Hope he and your pets enjoyed it as much as you.

Rest up, see you soon. So sweet of you to think of everyone while gone. We all thought of you too. I missed you, glad yor back :D .

11-05-2008, 04:52 PM
Thank you all for the warm welcome home...it is wonderful to be back too.

I missed you guys, you have become a part of my life, my daily life. I thought of you often and referred to you in conversation as my Lupie family...

My husband enjoyed, target shooting with the rifles and bow and arrow. Bow season in the UP now. Racing the four wheels through the woods and around the fields. He walked Riley every morning along the beach, through the snappy cold, brisk winds and rain...my brothers condo is on the lakefront of Lake Michigan. He ate good and I gained the weight...ugh.

IT didn't stalk me too much, just did the surprise visits..hey IT's me...ah, I am here...right now my calves are so huge from edema. When I pushed my thumb into the shin, it leaves a huge dimple that a large black olive would fill the hole, crazy..no exaggeration either. My husband is fascinated or in disbelief by how hard and large they have gotten, tight like a snare drum.

Pulled on my compression socks like a tight girdle, hope they provide relief. Must be from the scaryoids...

I'll read on more, see what you guys been up to...and I'll be more personable with my replies. I am still feeling a bit rugged. I think coming off steroids leaves me a bit feeling like I am in a flare...today was my last dose from my second refill...

Tomorrow is my Gyn appointment for my girlie results...wish me well...

Catch up with you later...thank you for missing me...head hugs all around.


11-05-2008, 05:07 PM
Head hugsss Oluwa,

Sorry to hear about your swollen leggies. keep your compression socks right next to the bed. Put them on before you even swing your legs off the bed.

I find acouple of days of getting them on first thing helps keep the swelling down.

Glad you had a good trip...it's time for ya to rest up now.

Hugs to ya.

11-05-2008, 07:28 PM
Thank you SITC..Hugs with the extra eses....Sssssss

Yep, my legs are huge and hard..and I just realized how little I have been using the bathroom...hummm..ugh. I feel like I look like a power weightlifter, huge legs..rub thighs rub and little waist. Must be edema from the prednisone...

Hopefully by tomorrow I will have peed it out of me...

Enjoying or enjoy your dinner with your Uncle..what was on the menu.

How are you? Cysts? Gone or growing....still watching?


11-06-2008, 03:08 PM
My girlie biopsy came back negative, happy..but..always a but, doesn't mean there isn't cancer she mumbled. She said she feels from the results and no bleeding since the last event that the biopsy is correct though.

Then she said a blurb about if I do see Spot run (my words), she will do a D&C "like we discussed"..huh? I recall, the convo was more like "while I'm in there...no, sense in putting me to sleep twice" Removal, excavate.

I asked her to prescrib Lasix for my jumbo calves...nope, ask your PCP.

G-r-r-r-r-r...Frustrated, airhead, itchy and water balloons for legs, I left with my lip curled. Went to PCP as a walk-in. I couldn't wait any longer and my one cell brain was about to give out, along with my patience. Opt for Walgreen's Duiretic OTC....

And about 5 minutes ago my PCP's nurse called, wondering where I was and my PCP feels I should come in. Concerned or for my money? I'm in my PJ's and traffic is mounting.

My legs are huge, went up a pant size to accommodate the legs...compression socks just made a circular dent around my knee like a sausage link twist. I actually gained 13 pounds...but I think 5 of it was from yesterday when I started to balloon up more. Maybe I should be more concerned about me...hummm and waited. Maybe see what tomorrow brings.

What happened to me.....who flipped my switch from okay to blah? I am still waiting for my moment to feel better. I believe, hope it will come by bedtime...if not, by the next light...


11-06-2008, 05:41 PM
Awww hugs Oluwa,

I hate fat leg days...you need to get straightened out on that.

Get your bottom back to the doctors and tell them to fix it. You're building up fluid so one of your meds must be taking a vacation.

Keep going with the compression soaks...put em on just before you swing your legs out of bed in the morning.

The cysties are still growing. :? I feel like crap. Told the doctor I would hold off till the next ultra sound in Feb unless the pain gets unbarable.

I have to get in to see stink face soon. I'm almost out of plaquenil....stink face said she gave me enough to last untill my next appointment...well she lied.

Had a great evening out with my Uncle. I'm very glad we were both feeling up to it. He's such a sweet heart.

11-07-2008, 08:04 AM
Hi Oh, I agree with SITC. Get your bottom back in the docs office, please :D . I want to here that you went and their taking care of your legs. No other option, we'll wait to see how it goes for you. Go...................... have you left yet :wink: .
No kidding, go please. Swollen legs concern me.

Hi SITC, sorry you feel crappy. Is it safe to wait until Feb? Just checking, don't want you to be in more pain than needed. Glad you and your uncle had a good time and were both up to it :D .

11-07-2008, 08:31 AM
We're all just falling apart lately. Kathy, Susan, Oluwa, me. I'm very glad your biopsy was a negative. I know you are hurting a hundred other ways, but at least the biopsy was a little victory. I hope you can have a better day today Oluwa.

11-07-2008, 09:43 AM
I have to agree with everyone else, do try to get back in to see your GP. The edema in your legs should be looked at and taken care of.
I'm so happy that the biopsy was negative, one less thing to over-stress your already stressed emotions. Now, if you could just get some relief from all of these other issues :mad:
Let us know how your GP visit went and what is being done about the edema.

Peace and Blessings

11-07-2008, 09:47 AM
I've deflated, 3.9 pounds, though I haven't peed much. I drank H20, bottles...Infusion V-8 Pomegranate with Blueberries with my Diuretic. Still could deflated 5 more. I still dimple up in my shin..now the dimple can accommodate a small olive. So, I'm chomping on watermelon, celery anything to flush my system.

Weird when I walk I can feel the fluid. One more day, if I'm still toting around the water bag I will go to my PCP office tomorrow, they are open on Saturdays. The doctors rotate Saturdays....

My husband picked up fruit and juices galore...I must have looked so pitiful doing the ugly cry on the steps. Whadaya need? I can't take this crap anymore....as I scratched my bloated belly and back.

I think the retaining wall of fluids is probably from the trip, sipping little liquid to limit road side stops...higher sodium UP foods than I am accustomed to. Sitting in a car for 4 days total. Dosing with scaryoid. I was bound to swell up like Marshmallow Man from Ghost Busters.

So swollen, my ankles has a fat roll, looking like a tube balloon bent in half. It's like an inanimate object, lifeless like how my spirit was/is beginning to feel.

I was getting frustrated, ornery, now I am bleak...coming back from a vacation not well. I'm still a bit peeved, irked with these other woes. I guess I just can't tolerate my 'norm' anymore. I need it to be better. Even though we talk of a woe, one woe today, I know behind us are many more. We usually talk about the one that is in the forefront that day. Just too many pigs in the pile. Pig pile. The top pig, gets talked about today.

I know if we were to list our daily symptoms we would have pages, eh? Ah, our norm.

I started to dose with Vitamin A. I read it can help with the eczema after 30 days of dosing. Crazy, as soon as the prednisone stop, the rash made it's appearance an encore and with no bowing. And with this growth spurt of bloat and water, sheesh now I have more land mass, skin to scratch..g-r-r-r-r.

My head looks like Martin Lawrence dressed as Big Momma, in size. Just seems so unreal. When I look in the mirror I cry. No more apple cheeks, more like cantaloupe size. I look like a cartoon character. My forehead is normal, my chin is normal..but the cheeks and jaw line, I look like I am chucked full of nuts....whaahappened. I look like I am having a bee sting reaction. I have avoided the mirror after I took a morning stare...who was that staring back at me. Brushed my teeth in the kitchen sink.

I am trying not to feel sorry for myself...but ugh I am. I keep trying to focus on my vacation but the itch, the burn, the headache, the back pain, Gerdie, the flood keep demanding my attention. I think my vacation was more than my body could handle and the prednisone and Lortab was my savings, so I could enjoy. It just preempted IT for 2 weeks. Now I feel like a turd.

Let me see if I can sleep it off like a good Vodka, 7-Up and Cranberry Juice hangover. That's where I'll be....z-z-z-z..


11-07-2008, 10:16 AM
Poor dear Oluwa, so sorry its so bad on you. Rest up, do wish you went to the doc today though. Do promise you will tomorrow, then let us know how it went. The days when our woes out do our happiness is hard. Hard to look past the "norms", and the extra pain it can bring at times. You are loved, cared for and needed. Rest and sweet dreams, may you wake up much better. I said a prayer to ease your suffering, so you can feel happy again. Keep that wonderful trip fresh in your mind, it was well worth it. Thats a happiness and good time no amount of money can buy and pain can take away. Fell better soon :D .

11-07-2008, 06:46 PM
Ummm Oluwa....

Did I miss, somewhere in that post of yours that you went to the doctor about you swolling pegs????? or did you not go?

Hmmm nah ... you would got to the doctor about that...the same way you would expect us to go to the doctor if we were pretending to be water balloons...right? Hmmm? Nag nag nag nag....nag nag.

bye the way...careful with all them fruity juices....gout loves fruit juice. :P

get your bottom to the doctor's missy.

11-07-2008, 07:24 PM
Nag, nag, my peg legs...I am, I am.... :shock: They, the docs.. are open from 9 -1PM tomorrow. I promise I will go.

They are not looking pretty again...they look like they need to be tapped with a spigot. Maybe it isn't the road trip after all.

Thank you everyone, for caring...nagging, lovin' me...

Night, Night...nice dreams...
Hugs all around..squeeze.