Re: how many of you??

November 25, 2001

WOW~ I have to write one more~ I hardly ever get sick sick, like with

influenza, anymore either!!! I wondered if it had something to do with the

stills too.

Matheson wrote: Hi Tricia, I know ma feels like she

has everything under control - but there is not a day goes by without her being

achy. She never gets sick though. We will have a cold keep running through the

house back and forth and she will never get it. She kisses the kids and lets

them eat with her when she is sick and we are so careful not to let them share.

We always get it but never her. When she does gets sick it's usually very bad

but hardly ever. I wonder if its something to do with having stills? Very weird

anyway.

Take Care

Don't know if this was what you were searching for.

Sheri

" how many of you?? " "

Good day to all Stilligans out there!

I have a question...How many of you..feel that you have the disease

under control, " yet " just don't feel well most of the time???

Although I have had several " good " days since taking the MTX last October,

(before that I felt sick almost *all* the time..day in and day out for way too

many years!) Most days I feel just not well. Do any of you feel this way???

Here are some of the ways I will feel..and sometimes it's just for a few

minutes.

Headachey, dizzy, weak, sweaty, cold, stuffed up, nauseated, weary, zombie,

pain in one place or another...etc.

I don't want it to sound like I'm on the " Pity Pot, because I know many of you

have

it much worse...But, I have been wondering about this for some time, and now I

am

asking.

Also...I can wake up in the morning, and feel like it is surely going to be my

last day on

earth, and then ...just like that!! Feeling like a new person! Is this the way

it works with

this dragon??? Or am I still the " odd one out?? "

Appreciating all of your comments ahead of time!!!

Oh...by the way..guess what??? I get to meet Tom Kufahl on Friday the 30th!!!!!!

Can't

hardly wait!! My hubby and I are going North for a few days, and have arranged

to meet

Tom on the way. Tom...if you read this...I am *really* looking forward to

meeting you!!!!!

Your Stills friend, Tricia

November 26, 2001

Thanks for your reply Kate.

I'm keen to get of meds or at least take the minimum possible. I'm still

trying to cut my steroids (been cutting for about 2 years now!) and am down

to 4.5mg/day - I see this as the priority particularly as I now have to

take Fosamax for steroid induced osteoporosis. I did ask about cutting the

Vioxx and will do that once I'm clear of the steroids, maybe I'll try

taking it at night and see what that does.... As for energy, strangely

enough I always seem to have enough to make love! LOL

thanks again,

Graham.

At 18:01 25/11/2001, you wrote:

>Graham (and everyone else)--

>

>I wholeheartedly agree with almost everything you have been saying. I have

>been in remission for more than a decade, but have always told people who

>asked that remission does not mean " back to the way things were " -- at least

>not for me. I have never been able to regain the energy that I once had.

>

>The one thing I wanted to mention to Graham was I was recently taken off of

>Vioxx (my rheumy wanted me on naproxen in stead -- I have no stomach issues)

>and just the removal of Vioxx from my drug roster made a huge difference in

>my energy level. I have no idea why, but Vioxx made me very, VERY sleepy. I

>was originally on 25mg, which I took at night so I didn't really notice it.

>But then my GP upped it to 50mg, and I wouldn't start to feel AWAKE until the

>following evening. When I stopped the Vioxx, that went away... Weird but

>true!

>

>For any of you who aren't currently on medication (other than pain related

>like NSAIDS), but are fatigued, I encourage you to see your Dr. I fought

>seeing the dr for a long time over fatigue issues -- I didn't want to be

>viewed as a whiner. But when it got to the point that I couldn't carry on

>normal daily life (making dinner, making love, making anything but the

>absolute minimum of daily life) I went to the doc. I was honest, I told him,

> " I don't know what you are going to do for me. Maybe you can't do anything.

>But at the very least, I will know that *I* tried to do something about it. "

>I went from only Vioxx to plaq, naproxen, and zantac... and I think the plaq

>is helping me. I know I have more energy now than I did -- and that is

>nothing but good news.

>

>Take care all -- love you

>Kate

November 26, 2001