Hello all!

[Guest guest]

Hello

I'm the mother of , he's 14 and has SD and we live in Norway. I've read

lots of mail since I joined the list one week ago. Your story is maybe the

closest to his, since your SD started when you were only ten. Unlike most people

here, who I believe became sick as adults.

Seems like everybody here have a more severe condition than my . I really

hope he doesn't have to go through all the pain I read about here. And , I

admire your fighting and your story of the boxing-club and competition. I hope

will fight as hard against the disease as you did.

I really hope that will go into remission. Does'nt anyone on the list have

a lighter version of Stills? Do I have to expect to live with this disease

all of his life? Can someone tell me about his statistic chances of having a

more normal life?

I admire you all, you are so brave and caring. But are the most active members

of this list more sick than the average SD-patient?

Kirsten

hello all!

whats up everyone and thank you for this family i see we have here. I guess

i should intorduce myself and probibly a bit of a story to follow.

My name is Medaglia (the G is silent if that helps anyone pernouce it

) Im from Canada! sault ste. marie Ontario to be more specific. Im 22

years old and i work as a Blueprint Administrator for Tenaris Algoma Tubes,

desk job. SD hit me i guess it would have to be about 12 years ago. It

mostly started with the high spiking fevers which at one point were hitting

me 6 times a day for a year straight. i missed my whole 7th grade, but they

let me pass and i went on with my life. the fevers would come and go and

soon it was such a part of my life i could almost in a way ignore them.

since i was diagnosed my doctors told me i had juvinile arthritis. the thing

is i decided to ignore the pain as well as the fevers so i kept going (young

and invincible!) i joined a boxing club in my hometown which was fun! and i

was damn good at it too! by that time the pain was getting worse and i knew

i shouldnt be there but i wasnt about to stop. i had my first real fight

comming up and i couldnt stop than so i kept trannin harder and harder. The

fight came....and i won! 2nd round K.O. by ME...the funny part is when i won

i yelled out " You got beat by a guy with Stills!!! " everyone just looked

confused but whatever. anyway after that fight i left and never came back.

the arthritis is too much now, cant ignore it anymore. by nine oclock at

night i simply cant walk anymore. The doctors used to have me on Vioxx but

that got taken off the market so all i was left with was Prednisone. i was

taking it untill i read about the side affects on the Stills website. i

refuse to take it anymore, im young and i dont need anymore complications.

soon i am going to see a specialist in Sudbury (a town 3 hours from here)

and right now i would like to thank you all because just from the few emails

ive read i feel so much more prepared than i every was before this. i know

now what to ask and what to expect.

anyway ive gone rambling again. sorry if that was a bit long. SD has been a

part of me for well over half my life so i have so many stories i couldnt

possibly fit them in one email.

you all seem like great people and i am very excited to join this group and

have someone to talk to finally (not even the local doctors knew about SD)

Medaglia.

[Guest guest]

Hello

I'm the mother of , he's 14 and has SD and we live in Norway. I've read

lots of mail since I joined the list one week ago. Your story is maybe the

closest to his, since your SD started when you were only ten. Unlike most people

here, who I believe became sick as adults.

Seems like everybody here have a more severe condition than my . I really

hope he doesn't have to go through all the pain I read about here. And , I

admire your fighting and your story of the boxing-club and competition. I hope

will fight as hard against the disease as you did.

I really hope that will go into remission. Does'nt anyone on the list have

a lighter version of Stills? Do I have to expect to live with this disease

all of his life? Can someone tell me about his statistic chances of having a

more normal life?

I admire you all, you are so brave and caring. But are the most active members

of this list more sick than the average SD-patient?

Kirsten

hello all!

whats up everyone and thank you for this family i see we have here. I guess

i should intorduce myself and probibly a bit of a story to follow.

My name is Medaglia (the G is silent if that helps anyone pernouce it

) Im from Canada! sault ste. marie Ontario to be more specific. Im 22

years old and i work as a Blueprint Administrator for Tenaris Algoma Tubes,

desk job. SD hit me i guess it would have to be about 12 years ago. It

mostly started with the high spiking fevers which at one point were hitting

me 6 times a day for a year straight. i missed my whole 7th grade, but they

let me pass and i went on with my life. the fevers would come and go and

soon it was such a part of my life i could almost in a way ignore them.

since i was diagnosed my doctors told me i had juvinile arthritis. the thing

is i decided to ignore the pain as well as the fevers so i kept going (young

and invincible!) i joined a boxing club in my hometown which was fun! and i

was damn good at it too! by that time the pain was getting worse and i knew

i shouldnt be there but i wasnt about to stop. i had my first real fight

comming up and i couldnt stop than so i kept trannin harder and harder. The

fight came....and i won! 2nd round K.O. by ME...the funny part is when i won

i yelled out " You got beat by a guy with Stills!!! " everyone just looked

confused but whatever. anyway after that fight i left and never came back.

the arthritis is too much now, cant ignore it anymore. by nine oclock at

night i simply cant walk anymore. The doctors used to have me on Vioxx but

that got taken off the market so all i was left with was Prednisone. i was

taking it untill i read about the side affects on the Stills website. i

refuse to take it anymore, im young and i dont need anymore complications.

soon i am going to see a specialist in Sudbury (a town 3 hours from here)

and right now i would like to thank you all because just from the few emails

ive read i feel so much more prepared than i every was before this. i know

now what to ask and what to expect.

anyway ive gone rambling again. sorry if that was a bit long. SD has been a

part of me for well over half my life so i have so many stories i couldnt

possibly fit them in one email.

you all seem like great people and i am very excited to join this group and

have someone to talk to finally (not even the local doctors knew about SD)

Medaglia.

[Guest guest]

I know that for me, when I'm feeling " normal " , I'm out there trying to be

" normal " and not reading or posting to this loop. There have been periods where

I had to delete messages unread because I couldn't hold anymore emails. It's

been a while since I've felt that well, but I think that you'll find that

those of us that are hurting a bit more are the ones posting more regularly to

the loop. So, unfortunately for the new folks, you'll generally be reading

about the more severe cases or times of our " family " . The healthier members are

out there living.

Carole in Hollywood FL

In a message dated 10/14/2006 5:11:49 P.M. Eastern Daylight Time,

krpuer@... writes:

But are the most active members of this list more sick than the average

SD-patient?

[Guest guest]

Thank you Carole! That was what I was hoping for.

I'm so glad to be able to read the stories here, and to learn about what this

terrible disease does to so many of you.

I will then be more prepared for what may experience in years to come. And

I'm also glad if it is so that a lot of the listmembers with less troubled

Stills lives are out enjoying life and are not so active mailing. It seems like

with this disease there are so many ways to be more or less attacked. I need to

learn much about Stills, because the doctors and the nurses I meet, don't

nescessarily know too much about it.

I hope that you'll soon be feeling well again Carole!

Take care

Kirsten

Re: hello all!

I know that for me, when I'm feeling " normal " , I'm out there trying to be

" normal " and not reading or posting to this loop. There have been periods

where

I had to delete messages unread because I couldn't hold anymore emails. It's

been a while since I've felt that well, but I think that you'll find that

those of us that are hurting a bit more are the ones posting more regularly to

the loop. So, unfortunately for the new folks, you'll generally be reading

about the more severe cases or times of our " family " . The healthier members

are

out there living.

Carole in Hollywood FL

In a message dated 10/14/2006 5:11:49 P.M. Eastern Daylight Time,

krpuer@... writes:

But are the most active members of this list more sick than the average

SD-patient?

[Guest guest]

>

> Hello

> I'm the mother of , he's 14 and has SD and we live in Norway.

I've read lots of mail since I joined the list one week ago. Your story

is maybe the closest to his, since your SD started when you were only

ten. Unlike most people here, who I believe became sick as adults.

>

> Seems like everybody here have a more severe condition than my .

I really hope he doesn't have to go through all the pain I read about

here. And , I admire your fighting and your story of the

boxing-club and competition. I hope will fight as hard against the

disease as you did.

>

> I really hope that will go into remission. Does'nt anyone on the

list have a lighter version of Stills? Do I have to expect to live

with this disease all of his life? Can someone tell me about his

statistic chances of having a more normal life?

>

> I admire you all, you are so brave and caring. But are the most active

members of this list more sick than the average SD-patient?

>

> Kirsten

>

> hello all!

>

>

>

> whats up everyone and thank you for this family i see we have here. I

guess

> i should intorduce myself and probibly a bit of a story to follow.

>

> My name is Medaglia (the G is silent if that helps anyone

pernouce it

> ) Im from Canada! sault ste. marie Ontario to be more specific. Im

22

> years old and i work as a Blueprint Administrator for Tenaris Algoma

Tubes,

> desk job. SD hit me i guess it would have to be about 12 years ago. It

> mostly started with the high spiking fevers which at one point were

hitting

> me 6 times a day for a year straight. i missed my whole 7th grade, but

they

> let me pass and i went on with my life. the fevers would come and go

and

> soon it was such a part of my life i could almost in a way ignore

them.

> since i was diagnosed my doctors told me i had juvinile arthritis. the

thing

> is i decided to ignore the pain as well as the fevers so i kept going

(young

> and invincible!) i joined a boxing club in my hometown which was fun!

and i

> was damn good at it too! by that time the pain was getting worse and i

knew

> i shouldnt be there but i wasnt about to stop. i had my first real

fight

> comming up and i couldnt stop than so i kept trannin harder and

harder. The

> fight came....and i won! 2nd round K.O. by ME...the funny part is when

i won

> i yelled out " You got beat by a guy with Stills!!! " everyone just

looked

> confused but whatever. anyway after that fight i left and never came

back.

> the arthritis is too much now, cant ignore it anymore. by nine oclock

at

> night i simply cant walk anymore. The doctors used to have me on Vioxx

but

> that got taken off the market so all i was left with was Prednisone. i

was

> taking it untill i read about the side affects on the Stills website.

i

> refuse to take it anymore, im young and i dont need anymore

complications.

> soon i am going to see a specialist in Sudbury (a town 3 hours from

here)

> and right now i would like to thank you all because just from the few

emails

> ive read i feel so much more prepared than i every was before this. i

know

> now what to ask and what to expect.

>

> anyway ive gone rambling again. sorry if that was a bit long. SD has

been a

> part of me for well over half my life so i have so many stories i

couldnt

> possibly fit them in one email.

>

> you all seem like great people and i am very excited to join this

group and

> have someone to talk to finally (not even the local doctors knew about

SD)

>

> Medaglia.

>

>

>

>

>

Hi, Kirsten...I am 51 and was diagnosed Still's Disease when I was 43.

My bout with SD at that time was pretty severe, not able to get out of

bed, swollen and painful joints, fevers to 104, etc. I wanted to let

you know that after I was controlled on medications in 1998, I have been

much better. I am on Relafen, MTX, folic acid and have aching joints,

but not to the point it resticts my activities. I also understand from

my excellent rheumatologist that some people even go completely into

remission. So, I would encourage you to remain positive that your son

will either go into remission or have " mild " symptoms like mine. Not

everyone suffers (fortunately) the severe symptoms that many on the

website unfortunately do.

Ilene Hruby

>

[Guest guest]

>

> Hello

> I'm the mother of , he's 14 and has SD and we live in Norway.

I've read lots of mail since I joined the list one week ago. Your story

is maybe the closest to his, since your SD started when you were only

ten. Unlike most people here, who I believe became sick as adults.

>

> Seems like everybody here have a more severe condition than my .

I really hope he doesn't have to go through all the pain I read about

here. And , I admire your fighting and your story of the

boxing-club and competition. I hope will fight as hard against the

disease as you did.

>

> I really hope that will go into remission. Does'nt anyone on the

list have a lighter version of Stills? Do I have to expect to live

with this disease all of his life? Can someone tell me about his

statistic chances of having a more normal life?

>

> I admire you all, you are so brave and caring. But are the most active

members of this list more sick than the average SD-patient?

>

> Kirsten

>

> hello all!

>

>

>

> whats up everyone and thank you for this family i see we have here. I

guess

> i should intorduce myself and probibly a bit of a story to follow.

>

> My name is Medaglia (the G is silent if that helps anyone

pernouce it

> ) Im from Canada! sault ste. marie Ontario to be more specific. Im

22

> years old and i work as a Blueprint Administrator for Tenaris Algoma

Tubes,

> desk job. SD hit me i guess it would have to be about 12 years ago. It

> mostly started with the high spiking fevers which at one point were

hitting

> me 6 times a day for a year straight. i missed my whole 7th grade, but

they

> let me pass and i went on with my life. the fevers would come and go

and

> soon it was such a part of my life i could almost in a way ignore

them.

> since i was diagnosed my doctors told me i had juvinile arthritis. the

thing

> is i decided to ignore the pain as well as the fevers so i kept going

(young

> and invincible!) i joined a boxing club in my hometown which was fun!

and i

> was damn good at it too! by that time the pain was getting worse and i

knew

> i shouldnt be there but i wasnt about to stop. i had my first real

fight

> comming up and i couldnt stop than so i kept trannin harder and

harder. The

> fight came....and i won! 2nd round K.O. by ME...the funny part is when

i won

> i yelled out " You got beat by a guy with Stills!!! " everyone just

looked

> confused but whatever. anyway after that fight i left and never came

back.

> the arthritis is too much now, cant ignore it anymore. by nine oclock

at

> night i simply cant walk anymore. The doctors used to have me on Vioxx

but

> that got taken off the market so all i was left with was Prednisone. i

was

> taking it untill i read about the side affects on the Stills website.

i

> refuse to take it anymore, im young and i dont need anymore

complications.

> soon i am going to see a specialist in Sudbury (a town 3 hours from

here)

> and right now i would like to thank you all because just from the few

emails

> ive read i feel so much more prepared than i every was before this. i

know

> now what to ask and what to expect.

>

> anyway ive gone rambling again. sorry if that was a bit long. SD has

been a

> part of me for well over half my life so i have so many stories i

couldnt

> possibly fit them in one email.

>

> you all seem like great people and i am very excited to join this

group and

> have someone to talk to finally (not even the local doctors knew about

SD)

>

> Medaglia.

>

>

>

>

>

Hi, Kirsten...I am 51 and was diagnosed Still's Disease when I was 43.

My bout with SD at that time was pretty severe, not able to get out of

bed, swollen and painful joints, fevers to 104, etc. I wanted to let

you know that after I was controlled on medications in 1998, I have been

much better. I am on Relafen, MTX, folic acid and have aching joints,

but not to the point it resticts my activities. I also understand from

my excellent rheumatologist that some people even go completely into

remission. So, I would encourage you to remain positive that your son

will either go into remission or have " mild " symptoms like mine. Not

everyone suffers (fortunately) the severe symptoms that many on the

website unfortunately do.

Ilene Hruby

>

[Guest guest]

Hi Illene:

I was diagnosed in April 2006. Had the typical chills that would send me to

the shower wanting the hot water to blister me over so I would stop shaking from

the cold.

Then I would get the fevers which always seem to start at the same time every

day and then the pain in my joints, (thought I was going through the change).

I tried to common sense figure it out...since I was getting fevers maybe motrin

or excedrin would help which it did for a little bit.

The rash is what blew me away. I tried hiding it, but a long sleeve and

turtle neck only goes so far...in the summer. The top and bottom of my hands

and front area of my neck gave me away constantly. Nevertheless, I met with my

rheumy (I also have Graves Disease) and he immediately diagnosed me with Stills.

Finding a decent physician will be the key to getting you back on that merry go

round of living your life.

Reading from this wonderful and giving group of warriors can really frighten

you, (sorry people) however if you can learn to deal with this illness and

educate yourself there is a huge benefit...sharing and reaching out to those who

are less fortunate. Though this group doesn't know it they have really helped

me to understand alot about this disease of which I am grateful.

I've been pretty fortunate in that pred 10m and naprosyn 500m and methotrexate

15m have allowed me to get my health back so I guess you can say that my

symptoms are pretty mild. Tiredness seems to have been with me for awhile

especially because of the Graves and I deal with it on a day to day basis.

Building up the immune system is important and I believe has helped me

tremendously. I take vitamins, anti-oxidants, drink green tea, load up on leafy

greens and WORK HARD at getting my body to get decent rest. (WOULD LOVE TO HEAR

IF ANYONE ELSE HAS BENEFITED FROM VITAMINS...etc...)

God speed to you. Be safe.

Ava Fiedler from Southern California...FIGHT ON!

Ilene Hruby wrote:

>

> Hello

> I'm the mother of , he's 14 and has SD and we live in Norway.

I've read lots of mail since I joined the list one week ago. Your story

is maybe the closest to his, since your SD started when you were only

ten. Unlike most people here, who I believe became sick as adults.

>

> Seems like everybody here have a more severe condition than my .

I really hope he doesn't have to go through all the pain I read about

here. And , I admire your fighting and your story of the

boxing-club and competition. I hope will fight as hard against the

disease as you did.

>

> I really hope that will go into remission. Does'nt anyone on the

list have a lighter version of Stills? Do I have to expect to live

with this disease all of his life? Can someone tell me about his

statistic chances of having a more normal life?

>

> I admire you all, you are so brave and caring. But are the most active

members of this list more sick than the average SD-patient?

>

> Kirsten

>

> hello all!

>

>

>

> whats up everyone and thank you for this family i see we have here. I

guess

> i should intorduce myself and probibly a bit of a story to follow.

>

> My name is Medaglia (the G is silent if that helps anyone

pernouce it

> ) Im from Canada! sault ste. marie Ontario to be more specific. Im

22

> years old and i work as a Blueprint Administrator for Tenaris Algoma

Tubes,

> desk job. SD hit me i guess it would have to be about 12 years ago. It

> mostly started with the high spiking fevers which at one point were

hitting

> me 6 times a day for a year straight. i missed my whole 7th grade, but

they

> let me pass and i went on with my life. the fevers would come and go

and

> soon it was such a part of my life i could almost in a way ignore

them.

> since i was diagnosed my doctors told me i had juvinile arthritis. the

thing

> is i decided to ignore the pain as well as the fevers so i kept going

(young

> and invincible!) i joined a boxing club in my hometown which was fun!

and i

> was damn good at it too! by that time the pain was getting worse and i

knew

> i shouldnt be there but i wasnt about to stop. i had my first real

fight

> comming up and i couldnt stop than so i kept trannin harder and

harder. The

> fight came....and i won! 2nd round K.O. by ME...the funny part is when

i won

> i yelled out " You got beat by a guy with Stills!!! " everyone just

looked

> confused but whatever. anyway after that fight i left and never came

back.

> the arthritis is too much now, cant ignore it anymore. by nine oclock

at

> night i simply cant walk anymore. The doctors used to have me on Vioxx

but

> that got taken off the market so all i was left with was Prednisone. i

was

> taking it untill i read about the side affects on the Stills website.

i

> refuse to take it anymore, im young and i dont need anymore

complications.

> soon i am going to see a specialist in Sudbury (a town 3 hours from

here)

> and right now i would like to thank you all because just from the few

emails

> ive read i feel so much more prepared than i every was before this. i

know

> now what to ask and what to expect.

>

> anyway ive gone rambling again. sorry if that was a bit long. SD has

been a

> part of me for well over half my life so i have so many stories i

couldnt

> possibly fit them in one email.

>

> you all seem like great people and i am very excited to join this

group and

> have someone to talk to finally (not even the local doctors knew about

SD)

>

> Medaglia.

>

>

>

>

>

Hi, Kirsten...I am 51 and was diagnosed Still's Disease when I was 43.

My bout with SD at that time was pretty severe, not able to get out of

bed, swollen and painful joints, fevers to 104, etc. I wanted to let

you know that after I was controlled on medications in 1998, I have been

much better. I am on Relafen, MTX, folic acid and have aching joints,

but not to the point it resticts my activities. I also understand from

my excellent rheumatologist that some people even go completely into

remission. So, I would encourage you to remain positive that your son

will either go into remission or have " mild " symptoms like mine. Not

everyone suffers (fortunately) the severe symptoms that many on the

website unfortunately do.

Ilene Hruby

>

---------------------------------

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

[Guest guest]

Hello Ilene!

I'm glad to hear that the medicines have helped you that much, and that you feel

much better than when you got the disease.

It's good to know that I can hope for a future with relatively mild symptoms for

. Allthough I'm aware that it's impossible to know what the Stills is up

to.

Last week we had an appointment with a rheuma-doctor at s hospital. He

will propably go to hospital soon and get some more medicin, and take a lot of

tests. Yesterday his fever was high, but today he's ok and in school. Do'nt know

if he is able to stay in school all day, we'll see.

Kirsten, mother of 14, Norway

hello all!

>

>

>

> whats up everyone and thank you for this family i see we have here. I

guess

> i should intorduce myself and probibly a bit of a story to follow.

>

> My name is Medaglia (the G is silent if that helps anyone

pernouce it

> ) Im from Canada! sault ste. marie Ontario to be more specific. Im

22

> years old and i work as a Blueprint Administrator for Tenaris Algoma

Tubes,

> desk job. SD hit me i guess it would have to be about 12 years ago. It

> mostly started with the high spiking fevers which at one point were

hitting

> me 6 times a day for a year straight. i missed my whole 7th grade, but

they

> let me pass and i went on with my life. the fevers would come and go

and

> soon it was such a part of my life i could almost in a way ignore

them.

> since i was diagnosed my doctors told me i had juvinile arthritis. the

thing

> is i decided to ignore the pain as well as the fevers so i kept going

(young

> and invincible!) i joined a boxing club in my hometown which was fun!

and i

> was damn good at it too! by that time the pain was getting worse and i

knew

> i shouldnt be there but i wasnt about to stop. i had my first real

fight

> comming up and i couldnt stop than so i kept trannin harder and

harder. The

> fight came....and i won! 2nd round K.O. by ME...the funny part is when

i won

> i yelled out " You got beat by a guy with Stills!!! " everyone just

looked

> confused but whatever. anyway after that fight i left and never came

back.

> the arthritis is too much now, cant ignore it anymore. by nine oclock

at

> night i simply cant walk anymore. The doctors used to have me on Vioxx

but

> that got taken off the market so all i was left with was Prednisone. i

was

> taking it untill i read about the side affects on the Stills website.

i

> refuse to take it anymore, im young and i dont need anymore

complications.

> soon i am going to see a specialist in Sudbury (a town 3 hours from

here)

> and right now i would like to thank you all because just from the few

emails

> ive read i feel so much more prepared than i every was before this. i

know

> now what to ask and what to expect.

>

> anyway ive gone rambling again. sorry if that was a bit long. SD has

been a

> part of me for well over half my life so i have so many stories i

couldnt

> possibly fit them in one email.

>

> you all seem like great people and i am very excited to join this

group and

> have someone to talk to finally (not even the local doctors knew about

SD)

>

> Medaglia.

>

>

>

>

>

Hi, Kirsten...I am 51 and was diagnosed Still's Disease when I was 43.

My bout with SD at that time was pretty severe, not able to get out of

bed, swollen and painful joints, fevers to 104, etc. I wanted to let

you know that after I was controlled on medications in 1998, I have been

much better. I am on Relafen, MTX, folic acid and have aching joints,

but not to the point it resticts my activities. I also understand from

my excellent rheumatologist that some people even go completely into

remission. So, I would encourage you to remain positive that your son

will either go into remission or have " mild " symptoms like mine. Not

everyone suffers (fortunately) the severe symptoms that many on the

website unfortunately do.

Ilene Hruby

>

[Guest guest]

Hello Kirsten:

I hope your son is feeling better these days. Please don't lose hope about your

son and his sickness. Although it is not possible to know what the Still's will

do, it is also very possible to live a happy and meaningful life with Still's.

In fact, I think all my other friends because they don't have Still's, probably

take their health for granted much more than I do.

I am 25, and I was diagnosed with Still's at 22. When I first had it, my

symptoms were very severe, and so far I have flared twice more with very severe

symptoms. At the same time, I have also been able to recover and graduate from

college. Now, I work for an American company in Singapore, and my life so far

has been pretty good. These days, I am able to work out regularly, go out with

friends, travel sometimes, and work in a job I love. Yes, I have to take meds

(humira, methotrexate, nexium, folic acid), but that's one of those things I've

accepted and just learned to live with.

Basically, the one thing that the disease taught me was not to do too much,

and learn how to manage and balance my time and energy. I've also learned not

to take life and health for granted. At first, it'll be hard (and it still gets

hard sometimes), but at least now you know that you have people to talk to here,

and that it is possible to live with Still's and be happy Good luck,

Kirsten, and we'll all be here for you if you need to...

Gita

Kirsten wrote:

Hello Ilene!

I'm glad to hear that the medicines have helped you that much, and that you feel

much better than when you got the disease.

It's good to know that I can hope for a future with relatively mild symptoms for

. Allthough I'm aware that it's impossible to know what the Stills is up

to.

Last week we had an appointment with a rheuma-doctor at s hospital. He will

propably go to hospital soon and get some more medicin, and take a lot of tests.

Yesterday his fever was high, but today he's ok and in school. Do'nt know if he

is able to stay in school all day, we'll see.

Kirsten, mother of 14, Norway

hello all!

>

>

>

> whats up everyone and thank you for this family i see we have here. I

guess

> i should intorduce myself and probibly a bit of a story to follow.

>

> My name is Medaglia (the G is silent if that helps anyone

pernouce it

> ) Im from Canada! sault ste. marie Ontario to be more specific. Im

22

> years old and i work as a Blueprint Administrator for Tenaris Algoma

Tubes,

> desk job. SD hit me i guess it would have to be about 12 years ago. It

> mostly started with the high spiking fevers which at one point were

hitting

> me 6 times a day for a year straight. i missed my whole 7th grade, but

they

> let me pass and i went on with my life. the fevers would come and go

and

> soon it was such a part of my life i could almost in a way ignore

them.

> since i was diagnosed my doctors told me i had juvinile arthritis. the

thing

> is i decided to ignore the pain as well as the fevers so i kept going

(young

> and invincible!) i joined a boxing club in my hometown which was fun!

and i

> was damn good at it too! by that time the pain was getting worse and i

knew

> i shouldnt be there but i wasnt about to stop. i had my first real

fight

> comming up and i couldnt stop than so i kept trannin harder and

harder. The

> fight came....and i won! 2nd round K.O. by ME...the funny part is when

i won

> i yelled out " You got beat by a guy with Stills!!! " everyone just

looked

> confused but whatever. anyway after that fight i left and never came

back.

> the arthritis is too much now, cant ignore it anymore. by nine oclock

at

> night i simply cant walk anymore. The doctors used to have me on Vioxx

but

> that got taken off the market so all i was left with was Prednisone. i

was

> taking it untill i read about the side affects on the Stills website.

i

> refuse to take it anymore, im young and i dont need anymore

complications.

> soon i am going to see a specialist in Sudbury (a town 3 hours from

here)

> and right now i would like to thank you all because just from the few

emails

> ive read i feel so much more prepared than i every was before this. i

know

> now what to ask and what to expect.

>

> anyway ive gone rambling again. sorry if that was a bit long. SD has

been a

> part of me for well over half my life so i have so many stories i

couldnt

> possibly fit them in one email.

>

> you all seem like great people and i am very excited to join this

group and

> have someone to talk to finally (not even the local doctors knew about

SD)

>

> Medaglia.

>

>

>

>

>

Hi, Kirsten...I am 51 and was diagnosed Still's Disease when I was 43.

My bout with SD at that time was pretty severe, not able to get out of

bed, swollen and painful joints, fevers to 104, etc. I wanted to let

you know that after I was controlled on medications in 1998, I have been

much better. I am on Relafen, MTX, folic acid and have aching joints,

but not to the point it resticts my activities. I also understand from

my excellent rheumatologist that some people even go completely into

remission. So, I would encourage you to remain positive that your son

will either go into remission or have " mild " symptoms like mine. Not

everyone suffers (fortunately) the severe symptoms that many on the

website unfortunately do.

Ilene Hruby

>

[Guest guest]

Kirsten,

One important thing to remember is that when people feel better,

they get out and DO - they don't sit on their computers typically.

Even active members go in and out - like myself. Sometimes we get

so involved in actually being able to get out of the house that we

dont' come to the list. A lot of us on the list need the support of

others dealing with not only the disease, but the host of emotional

issues that can come with feeling alone and isolated and in pain.

Those not feeling so bad seem to cope better and not need quite as

much support.

So just keep in mind that there are definitely others out there in

remission or who are able to function quite well with Stills.

I myself am currently functioning quite well with Stills though I

have a long way to go to feel close to 34 - eek...turned that this

morning! I've been on this list so long that these guys are part of

my family and in many cases, know me better than my own family. So

I don't plan on abadoning the group anytime soon! They helped me

through dark times - and will help me through the dark times to

come - and I want to be there for them.

So yes, there is definitely hope for your son. There are a few other

mothers on this list, I think they lurk mostly. You can check the

archives to see if you can find their information and email them

individually.

Houston

[Guest guest]

Hi allJust wanted to say a quick hello. I have been in trouble at work for my internet usage! I have had to tone it down a bit and not post, my home comp is sooo slow. I have slowly read through about 200 posts tonight! Seems like everyone s doing well! Hello to all the new people!I think i am going OK, i might just be in that ellusive 'green zone' the docs talk about! I have added my weight stats to the spread sheet, there are some fantastic losses this month! YAY to everyone!.............Juzzy xxxJuJu___

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