Re: End of a Remission - sobsobsobsob Really long! Sorry.

April 5, 2004

Sorry to hear your in bad flare right now Carole,glad the pred has helped some.Hope you sold lots today,i know what you mean about the unfocused stuff i find myself in never never land all the time mind goes blank lol usually only monentarily though take care. d.Canada

End of a Remission - sobsobsobsob Really long! Sorry.

Hello Stilligans,

I haven't written in a very long while - living life while the living was good I suppose. Hope everyone is painfree. Welcome to the newbies.

I've been on this loop for a very long time and skim many of the emails even though I'm not writting too often. Seems like there are bunches of Carole's now. Call me Carole Ann now I guess.

I was doing soooo well. I'm working fulltime, was down to 1 - 2 mg of pred per day, I was finally losing a bit of weight since the beginning of the year. And CRASH!!!!!

Al, my hubby (some of you may remember when we got married) has had job challenges for the past couple of years. He got Fibromyalgia when I got Stills. Didn't want to be outdone I guess. Well, he's decided he only wants to work if it's something he enjoys and feels good about! At 51, I guess that would be a terrific goal except with bills out the yingyang, it's not such a good idea, Well, he got a job with me and while he didn't like it as much as I did, he did work for 6 weeks. 10 days ago he quit and decided he wanted to be self-employed again. Brought back all sorts of horrible memories of being broke all the time. Grrr! Who says you have to enjoy your job and feel fulfillment???

Well, after many years of remission, my stills has flared big time. (I can't remember exactly but it must be about 3 or 4 yrs) I've been told to jump to 40mgs of pred and there went my weight loss - can't stop eating. I've barely worked since then and I'm on straight commission, so no work no pay. So that's even more stress.

I had a terrific rhuemy in Orlando that I drove 3 hours one way to see but then got new health insurance and I needed a new one. First I went to one about 45 minutes away that a young fellow on the loop recommended. Can't say I was pleased with him. He told me all of the things that were wrong with my old rheumy and how he's going to make me all better. He wouldn't look me in the eyes though and that really bugged me. Plus he wanted all of these time consuming expensive tests done that I couldn't see doing as I was fine.

I went to my pcp and was given a referral for a new doctor. He's nice enough but I can't say that I trust his still's knowledge too much. He's a fibro specialist, so he loves to talk to Al and with me he just asks, "how are you today?" I remind him to give me blood tests. Grrr. He did take me off of Arava about 2 months ago and that was ok, no noticable differences and Arava is what really helped me the most back before my remission. I guess the liver doesn't like the Arava too much.

I'm sure the flair has a lot to do about hubby trying to be self employed again and being broke. The new insurance co-pays are a ton higher than they used to be and have put big balances on the credit cards. Plus they stopped my celebrex and put me on vioxx which I don't think works nearly as well.

First it was the swollen glands. Then I noticed a slight rash. I went to 5mgs pred on my own and then 10. The doctor was out of town last week when I really was doing badly and his on-call dude was useless. Didn't call me back one time I called. And the other time he asked, what do you normally do when you flare? Well, I haven't had a flare in a while, and isn't that what he's supposed to help me with???? He suggested going from my 2 mgs of pred to 60mgs! I told him that the last time I did that, I was in the fetal position and suicidal. So he suggested 40mgs. Whoppee!

Then my throat closed down and even though I didn't want to go to 40, I did. Breathing does have it's advantages. My doctor came back and I don't really remember what he said, but I haven't had much sleep in the past few days.Little loopy. The rash is bad, the swelling, the glands, low grade fever - all of it is back - damn! By the way, during the remission, I didn't have the rash at all for those of you with that.

So here I am. I've gained a ton of wieght in the past 2 weeks, all I lost plus some more I imagine. The first day I took 40mgs of prednison, I had an interesting thought:

Even during remission, I had lots of aches and pains, but they were tollerable with all the meds I was still on. Going on 40 mgs pred made me virtually painfree that first night. It was very interesting when I realized why I seem so unfocused these days. I want to blame it on being old (I turn 52 in a few months), or just confusion. But the reality is, lets say I'm in the middle of a project or thought and something hurts and I mentally stop to think about it. Then I need to go back to where I was mentally before the pain began and it's no wonder I never was focused even during a remission. I used to have a very responsible high pressure job and know I could never do that again, my brain can't think that well anymore. I guess that's why I worry so much about Al wanting to be self-employed again. He's on tons of meds as well and I know how hard it is to focus. Plus I can't be the help mentally I used to be.

Oh well, I'm going to call my doctor now and try to go to work this afternoon and make a few sales deals. Wish me luck guys.

Love Carole Ann

Feel good everybody

Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

April 5, 2004

Hi there Carole Ann,

Well friend, I'm supposing that the stress isn't making things any better for you!

But, you already know that I'm sure.

Not much one can do about getting another year added on to their age every year.

Actually I have had some of my best days (since the Stills Dragon found me when

I was 31) in the past couple of years, and I am in my 60's. I can handle getting older

much better than I can handle being sick.

Couple of suggestions...well actually one, as Caroline already gave you some

great info about docs. Try to find somewhere to get some Celebrex for nothing,

samples from a doc or whatever (Caroline would know how to go about this also..

she IS amazing!) From experience, and yes, I do know that we are all different,

*but,* the Vioxx made me so sick, and helped not one whit, whereas the Celebrex

really does help keep many aches and pains to the point of being able to cope.

Al probably doesn't feel well and the comfort of working at home is nice. Is it possible

for either or both of you to try for disability? Yeah, I know..even if you do, what pays the

bills in the meantime? My heart goes out to the both of you, and I'm hoping this flare

doesn't last long, and the stress lets up for you.

Still in Wisconsin,

Tricia

-- End of a Remission - sobsobsobsob Really long! Sorry.