about me

June 29, 2002

Welcome to the group Brent!

There are several members of this support group

who have either tried Remicade or are now on it.

Although, I too suffer from this Stills DIsease, my

rhuemy has not yet allowed me to try the Remicade,

so I can not answer your questions about it.

You have had a tough time of it haven't you? That

is one of the meanest things connected with this

disease (excepting for steroid side effects) going

into a remission, and being symptom free...and

then it hits again! ( Hopefully you will go into

another remission in the future. )

You will be glad you joined this support group, so

many people having the same disease, and you

thought you were all alone. You will receive a lot

of great information, and support here. Again...

welcome!!!

~~tricia~~

-- About me

Well i just want to say hi to all i just joined the support group

and really look forward to learning what others go through with

stills , as that it is pretty rare i don't know anyone else with it

so i get no 3rd party info, excetp from what the doctors tell me and

what i read.

Im 23 years old and was diagnosed with stills 4 years ago a very

young age to get something like this. It has been very hard on my

physically and emotionaly.

When i got the first signs of my stills the flair lasted almost 3

months the pain was unbeleiveable it was so bad i could hardly move,

and any movement i was able to do cause extreme pain, i ran temps of

103, doctors had no idea what was wrong with me but finaly i saw a

rhuemy and he did note that i had stills. After those 3 months went

by it completely went away i was normal again. That lasted alittle

over a year and then i started get swelling in my wrists and my

knees and feet, (the pain has never since been as bad as those frist

3 months) and a funny rush that was red and spotted though it never

iched or hurt, and it always seemed to go away the next morning.

Anyway i was put on methotrexate and again it started to feel better

i felt 95% normal with very little pain the rash was nearly gone.

That worked for over a year , i have moved to florida since that

time and am attending school, but 3 months ago my flair ups came

back. I had joint pain and fevers, since then we have been trying to

find a doctor that is good, ive been to 2 rhuemys here and none seem

to be very good, i fight with insurance companys, my pcps, i had

tests done for Hep B that was positive, it later turned out to be

false my last rhuemy didn't seem to beleive me when i told him it

was a false and the DNA test showed it was negitive. About 3 weeks

ago my rash for some reason covered my entire body and for the frist

time really iched alot it was pretty bad, all my skin on my arms

hands back thighs and evenmy head peeled, now the rash is mostly

gone, but some of it refuses to leave and i still ich my fevers are

gone now, and alot of my joint pain since the rash has been small,

but its still there i can still feel it in my wrists.

Going through all this has made me feel lost. i have been talking to

doctors the only doctor that seems to know anything isn't even a

rhuemy, hes a infectous disease and he treats people with remicade

ive read up on it, but also i would like to hear from those of you

that have been treated with remicade already and how it has worked

for them how bad the side effects have been all that stuff. i am

really hoping this is my answer to make this misery end.

I thank you all for listen and hope to hear from ya soon

Your new friend

Brent

July 11, 2002

well my doctor had taken me off MTX because my liver levels were elavated a

bit, this is the rhuemy that im firing ,he doesn't understand stills at all,

still can cause that type of raise. But in about a week im gonna start asking

my doctor to start me with remicade and ill also ask him about kineret too

January 24, 2004

I know it sounds lame, but I feel like giving you a great big hug

. Sometimes it's so easy to look at the 135 pounds and

think it's a huge mountain to overcome, so not do anything about

it. For you to have made the decision to get up and change is an

amazing thing. My total fat loss needed is 83pounds, and I have

lost 37 already. Each day it gets closer and closer. The thing to

remember is to set small goals. CHUNK your goals into things you

simply can't fail at. Losing 5 pounds is VERY achievable, and when

you lose it, recognise that you've achieved a goal, and move onto

the next one. As long as you always have a short term goal in sight

(yes, your 135 pound long term goal is important too, but the short

term ones are the ones that will keep you going when times get

tough) you WILL make it. yay you :-)

in NZ

> Ok, I will just share a bit about myself. am extremely overweight.

EXTREMELY. So I really don't want to share that. Is it necessary for

this group? Basically, I want to lose 135lbs!!!!!!!!!!!!!! That's a

lot, you may say...well I know it is, and that's why I desperately

need to do this. I know I will need to do more than one 12 week

program, but I will be happy with a chunk knocked out in this 12

weeks. I'm not sure how much to expect. If I work really hard,

maybe 40 lbs? Was anyone here ever as overweight as me and has a

good success story?

>

January 24, 2004

:

There are many folks here (and on other BFL boards/sites) who have

had 100+ lbs to lose and have done it. You can, too. Can you lose

40lbs in 12 weeks? Possibly. Only YOU know-- isn't that cool? What I

mean by that is that YOU are the director of your body now. That's

what BFL gives you-- the knowledge and tools to control your body.

Read the " abyss " chapter in BFL again if you haven't recently.

It's SO important to have a positive mental image of where you want

to go. I remember reading somewhere that your goals shouldn't

necessarily be " lose x lbs by x date " but rather should be goals

that you have total control over like " I am exercising at the gym

every day " , " I eat 6 clean meals per day " , and " I enjoy exercising

and feel good about myself " . These are the achievable goals and ones

you have control over-- the bonus is that when you do these, the

weight/fat loss follows. It hasn't any other way but the highway!

Oh, for more inspiration, please check out the Transformation link

in http://www.leanandstrong.com or http://www.bodychangers.com.

You CAN do this!

HTH,

Marie