Re: A lighter version of Stills?

[Guest guest]

Dear Kirsten,

This caught my attention, your idea of a lighter version of Stills.

I probably have that, but it's a misnomer. A lighter version might mean that

your bloodwork comes out pretty normal, and that you don't have any major organ

damage from the disease. Most days maybe you can get up in the morning, do a

few things, not have as much pain as when the disease is more " active " , however

it's unpredictable. You can start the day out great and then go downhill fast

with pain and fatigue, even if you didn't overdo it.

I say it's a misnomer because Still's is a systemic disease- it can affect

everything in the body. Even a lighter version of Still's will give you a

fever, or a headache, or something every minute of everyday. Some symptoms make

no sense and can be pretty disturbing when you first get sick, then you learn to

live with them. You call the doctor when something feels different. Some of

these symptoms are controlled by medications, but don't completely go away.

The way I look at it, if the pain is under control then it's a great day. Can

the disease cause severe pain? Yes, but mostly during flares- not constant,

although everyone 's experience is different. And it's impossible to know if

your life will be completely normal, you are thankful for when it's close to

normal and you take care of yourself when you're not. You learn to live with

it, you take time to appreciate things more. You can have a good life in spite

of Still's, of course- you define how you are going to adapt to living with it.

Kids, or teenagers may have an easier time of adapting to it than those of us

who got it as adults.

Best wishes,

beth

[Guest guest]

Dear Kirsten,

This caught my attention, your idea of a lighter version of Stills.

I probably have that, but it's a misnomer. A lighter version might mean that

your bloodwork comes out pretty normal, and that you don't have any major organ

damage from the disease. Most days maybe you can get up in the morning, do a

few things, not have as much pain as when the disease is more " active " , however

it's unpredictable. You can start the day out great and then go downhill fast

with pain and fatigue, even if you didn't overdo it.

I say it's a misnomer because Still's is a systemic disease- it can affect

everything in the body. Even a lighter version of Still's will give you a

fever, or a headache, or something every minute of everyday. Some symptoms make

no sense and can be pretty disturbing when you first get sick, then you learn to

live with them. You call the doctor when something feels different. Some of

these symptoms are controlled by medications, but don't completely go away.

The way I look at it, if the pain is under control then it's a great day. Can

the disease cause severe pain? Yes, but mostly during flares- not constant,

although everyone 's experience is different. And it's impossible to know if

your life will be completely normal, you are thankful for when it's close to

normal and you take care of yourself when you're not. You learn to live with

it, you take time to appreciate things more. You can have a good life in spite

of Still's, of course- you define how you are going to adapt to living with it.

Kids, or teenagers may have an easier time of adapting to it than those of us

who got it as adults.

Best wishes,

beth

[Guest guest]

beth

Your message caught my eye. I seem to have the 'lighter' version of Stills

as well. At least so far. My labs have NEVER been abnormal but I have all

the other symptoms. But it's the only place where I felt that my symptoms

really 'fit' and trust me, I searched for other illnesses to have. I didn't

want this one. I am just now trying to get a handle on how it's going to

affect me. When I was first diagnosed I was very sick with the typical high

fevers, rash and literally debilitating joint pain. But after 8 months I

got better and denied an illness at all.

After 6 months of feeling like crap I can't deny any longer that something

is most definitely wrong. I do feel really lucky reading others' stories

sometimes. And guilty for even feeling sad about how it's so drastically

changed my life, you know? My pain doesn't seem as great and I haven't had

the terrible infections that others' endure and I feel very sad for every

person who has this disease.

I do know how I can't predict my days or how they'll go. I can wake up

feeling great and two hours later have a fever and feel like I have the flu

and just want to crawl back into bed. Sometimes after a night of what seems

like NO sleep I'll anticipate a horrible day and it doesn't happen. The

whole day goes by and I feel great.....waiting for the other shoe to fall.

Or like the other day when I felt so good I just enjoyed every minute and

did everything I wanted to, stayed up late watching my favorite

shows.......but the next day I didn't get out of bed I was so wiped. How do

you plan for stuff like that? I mean, I can't even hold a date because the

day I make the date I might feel great, but the day we make it, I'm a mess.

So much for meeting the man of my dreams?!?!

Sorry to go on and on. I'm having a pretty good day today actually, but

sometimes I beat myself up for even being sad about the disease at all when

I know others' have it so much worse than me. Do you feel that ever?

Cammie

>

>Reply-To: Stillsdisease

>To: <Stillsdisease >

>Subject: Re: A lighter version of Stills?

>Date: Sat, 14 Oct 2006 18:19:08 -0400

>

>Dear Kirsten,

>

>This caught my attention, your idea of a lighter version of Stills.

>

>I probably have that, but it's a misnomer. A lighter version might mean

>that your bloodwork comes out pretty normal, and that you don't have any

>major organ damage from the disease. Most days maybe you can get up in the

>morning, do a few things, not have as much pain as when the disease is more

> " active " , however it's unpredictable. You can start the day out great and

>then go downhill fast with pain and fatigue, even if you didn't overdo it.

>

>I say it's a misnomer because Still's is a systemic disease- it can affect

>everything in the body. Even a lighter version of Still's will give you a

>fever, or a headache, or something every minute of everyday. Some symptoms

>make no sense and can be pretty disturbing when you first get sick, then

>you learn to live with them. You call the doctor when something feels

>different. Some of these symptoms are controlled by medications, but don't

>completely go away.

>

>The way I look at it, if the pain is under control then it's a great day.

>Can the disease cause severe pain? Yes, but mostly during flares- not

>constant, although everyone 's experience is different. And it's

>impossible to know if your life will be completely normal, you are thankful

>for when it's close to normal and you take care of yourself when you're

>not. You learn to live with it, you take time to appreciate things more.

>You can have a good life in spite of Still's, of course- you define how you

>are going to adapt to living with it. Kids, or teenagers may have an

>easier time of adapting to it than those of us who got it as adults.

>

>Best wishes,

>

>

>beth

>

>

>

[Guest guest]

Cammie I have had this disease since 1972. You described very very much of

what my days are like. Very very similar. It is frustrating. At times I doubt

myself...I say.. " why do I feel like this " .

Very annoying Simply annoying!

Hope you have lots of good days!

Liz NJ( near Philadelphia)

[Guest guest]

Hi ladies,

This message also caught my eye. I guess you can say i also have the " lighter "

version of Stills as well. I first had a flare up two years ago that lasted a

month. The doctors were not able to diagnose me and just gave me a week supply

of steroids after a month of being hospitalized and then I was fine. But then

came another flare up this January which landed me in the hospital for another

month but this time I wasn't getting any better so i have been on steroids since

February. I definitely feel comfort hearing others stories because it makes me

feel like I'm not alone, and fortunately I am lucky that I don't have the

disease that bad. My heart reaches out to others who definitely have it worse

and have been battling it longer then I have. But all i can do is pray for

everyone and try to stay strong. I feel guilty at times because it's hard to

stay positive when I'm having a flare up or (as vain as it sounds) dealing with

the side effects of steroids. I've learned to try

to brush off when people question why I've gained weight or why my face is

swollen. Everyday is different one day I can feel so energized and the other

totally drained but let's just hope that passes. I hope this helps

Kathy

violet viola wrote:

beth

Your message caught my eye. I seem to have the 'lighter' version of Stills

as well. At least so far. My labs have NEVER been abnormal but I have all

the other symptoms. But it's the only place where I felt that my symptoms

really 'fit' and trust me, I searched for other illnesses to have. I didn't

want this one. I am just now trying to get a handle on how it's going to

affect me. When I was first diagnosed I was very sick with the typical high

fevers, rash and literally debilitating joint pain. But after 8 months I

got better and denied an illness at all.

After 6 months of feeling like crap I can't deny any longer that something

is most definitely wrong. I do feel really lucky reading others' stories

sometimes. And guilty for even feeling sad about how it's so drastically

changed my life, you know? My pain doesn't seem as great and I haven't had

the terrible infections that others' endure and I feel very sad for every

person who has this disease.

I do know how I can't predict my days or how they'll go. I can wake up

feeling great and two hours later have a fever and feel like I have the flu

and just want to crawl back into bed. Sometimes after a night of what seems

like NO sleep I'll anticipate a horrible day and it doesn't happen. The

whole day goes by and I feel great.....waiting for the other shoe to fall.

Or like the other day when I felt so good I just enjoyed every minute and

did everything I wanted to, stayed up late watching my favorite

shows.......but the next day I didn't get out of bed I was so wiped. How do

you plan for stuff like that? I mean, I can't even hold a date because the

day I make the date I might feel great, but the day we make it, I'm a mess.

So much for meeting the man of my dreams?!?!

Sorry to go on and on. I'm having a pretty good day today actually, but

sometimes I beat myself up for even being sad about the disease at all when

I know others' have it so much worse than me. Do you feel that ever?

Cammie

>From: " beth's Hotmail "

>Reply-To: Stillsdisease

>To:

>Subject: Re: A lighter version of Stills?

>Date: Sat, 14 Oct 2006 18:19:08 -0400

>

>Dear Kirsten,

>

>This caught my attention, your idea of a lighter version of Stills.

>

>I probably have that, but it's a misnomer. A lighter version might mean

>that your bloodwork comes out pretty normal, and that you don't have any

>major organ damage from the disease. Most days maybe you can get up in the

>morning, do a few things, not have as much pain as when the disease is more

> " active " , however it's unpredictable. You can start the day out great and

>then go downhill fast with pain and fatigue, even if you didn't overdo it.

>

>I say it's a misnomer because Still's is a systemic disease- it can affect

>everything in the body. Even a lighter version of Still's will give you a

>fever, or a headache, or something every minute of everyday. Some symptoms

>make no sense and can be pretty disturbing when you first get sick, then

>you learn to live with them. You call the doctor when something feels

>different. Some of these symptoms are controlled by medications, but don't

>completely go away.

>

>The way I look at it, if the pain is under control then it's a great day.

>Can the disease cause severe pain? Yes, but mostly during flares- not

>constant, although everyone 's experience is different. And it's

>impossible to know if your life will be completely normal, you are thankful

>for when it's close to normal and you take care of yourself when you're

>not. You learn to live with it, you take time to appreciate things more.

>You can have a good life in spite of Still's, of course- you define how you

>are going to adapt to living with it. Kids, or teenagers may have an

>easier time of adapting to it than those of us who got it as adults.

>

>Best wishes,

>

>

>beth

>

>

>

[Guest guest]

Hi ladies,

This message also caught my eye. I guess you can say i also have the " lighter "

version of Stills as well. I first had a flare up two years ago that lasted a

month. The doctors were not able to diagnose me and just gave me a week supply

of steroids after a month of being hospitalized and then I was fine. But then

came another flare up this January which landed me in the hospital for another

month but this time I wasn't getting any better so i have been on steroids since

February. I definitely feel comfort hearing others stories because it makes me

feel like I'm not alone, and fortunately I am lucky that I don't have the

disease that bad. My heart reaches out to others who definitely have it worse

and have been battling it longer then I have. But all i can do is pray for

everyone and try to stay strong. I feel guilty at times because it's hard to

stay positive when I'm having a flare up or (as vain as it sounds) dealing with

the side effects of steroids. I've learned to try

to brush off when people question why I've gained weight or why my face is

swollen. Everyday is different one day I can feel so energized and the other

totally drained but let's just hope that passes. I hope this helps

Kathy

violet viola wrote:

beth

Your message caught my eye. I seem to have the 'lighter' version of Stills

as well. At least so far. My labs have NEVER been abnormal but I have all

the other symptoms. But it's the only place where I felt that my symptoms

really 'fit' and trust me, I searched for other illnesses to have. I didn't

want this one. I am just now trying to get a handle on how it's going to

affect me. When I was first diagnosed I was very sick with the typical high

fevers, rash and literally debilitating joint pain. But after 8 months I

got better and denied an illness at all.

After 6 months of feeling like crap I can't deny any longer that something

is most definitely wrong. I do feel really lucky reading others' stories

sometimes. And guilty for even feeling sad about how it's so drastically

changed my life, you know? My pain doesn't seem as great and I haven't had

the terrible infections that others' endure and I feel very sad for every

person who has this disease.

I do know how I can't predict my days or how they'll go. I can wake up

feeling great and two hours later have a fever and feel like I have the flu

and just want to crawl back into bed. Sometimes after a night of what seems

like NO sleep I'll anticipate a horrible day and it doesn't happen. The

whole day goes by and I feel great.....waiting for the other shoe to fall.

Or like the other day when I felt so good I just enjoyed every minute and

did everything I wanted to, stayed up late watching my favorite

shows.......but the next day I didn't get out of bed I was so wiped. How do

you plan for stuff like that? I mean, I can't even hold a date because the

day I make the date I might feel great, but the day we make it, I'm a mess.

So much for meeting the man of my dreams?!?!

Sorry to go on and on. I'm having a pretty good day today actually, but

sometimes I beat myself up for even being sad about the disease at all when

I know others' have it so much worse than me. Do you feel that ever?

Cammie

>From: " beth's Hotmail "

>Reply-To: Stillsdisease

>To:

>Subject: Re: A lighter version of Stills?

>Date: Sat, 14 Oct 2006 18:19:08 -0400

>

>Dear Kirsten,

>

>This caught my attention, your idea of a lighter version of Stills.

>

>I probably have that, but it's a misnomer. A lighter version might mean

>that your bloodwork comes out pretty normal, and that you don't have any

>major organ damage from the disease. Most days maybe you can get up in the

>morning, do a few things, not have as much pain as when the disease is more

> " active " , however it's unpredictable. You can start the day out great and

>then go downhill fast with pain and fatigue, even if you didn't overdo it.

>

>I say it's a misnomer because Still's is a systemic disease- it can affect

>everything in the body. Even a lighter version of Still's will give you a

>fever, or a headache, or something every minute of everyday. Some symptoms

>make no sense and can be pretty disturbing when you first get sick, then

>you learn to live with them. You call the doctor when something feels

>different. Some of these symptoms are controlled by medications, but don't

>completely go away.

>

>The way I look at it, if the pain is under control then it's a great day.

>Can the disease cause severe pain? Yes, but mostly during flares- not

>constant, although everyone 's experience is different. And it's

>impossible to know if your life will be completely normal, you are thankful

>for when it's close to normal and you take care of yourself when you're

>not. You learn to live with it, you take time to appreciate things more.

>You can have a good life in spite of Still's, of course- you define how you

>are going to adapt to living with it. Kids, or teenagers may have an

>easier time of adapting to it than those of us who got it as adults.

>

>Best wishes,

>

>

>beth

>

>

>

[Guest guest]

Dear beth

thank you for sharing your thaughts and experiences. Reading your mail get me

thinking that you have learned to live with the disease, and you are thankful

and satisfied when you have a time without pain. That must be a gift and make

your life much better. I really hope my will accept the disease and learn

to cope with it, no matter how serious the Stills will be in him.

It is interesting to me to read about people who has a lighter version of

Stills. And now I've joined the JRA-list for children also, and I learn a lot.

Best wishes

Kirsten, Norway

Re: A lighter version of Stills?

Dear Kirsten,

This caught my attention, your idea of a lighter version of Stills.

I probably have that, but it's a misnomer. A lighter version might mean that

your bloodwork comes out pretty normal, and that you don't have any major organ

damage from the disease. Most days maybe you can get up in the morning, do a few

things, not have as much pain as when the disease is more " active " , however it's

unpredictable. You can start the day out great and then go downhill fast with

pain and fatigue, even if you didn't overdo it.

I say it's a misnomer because Still's is a systemic disease- it can affect

everything in the body. Even a lighter version of Still's will give you a fever,

or a headache, or something every minute of everyday. Some symptoms make no

sense and can be pretty disturbing when you first get sick, then you learn to

live with them. You call the doctor when something feels different. Some of

these symptoms are controlled by medications, but don't completely go away.

The way I look at it, if the pain is under control then it's a great day. Can

the disease cause severe pain? Yes, but mostly during flares- not constant,

although everyone 's experience is different. And it's impossible to know if

your life will be completely normal, you are thankful for when it's close to

normal and you take care of yourself when you're not. You learn to live with it,

you take time to appreciate things more. You can have a good life in spite of

Still's, of course- you define how you are going to adapt to living with it.

Kids, or teenagers may have an easier time of adapting to it than those of us

who got it as adults.

Best wishes,

beth

[Guest guest]

Dear beth

thank you for sharing your thaughts and experiences. Reading your mail get me

thinking that you have learned to live with the disease, and you are thankful

and satisfied when you have a time without pain. That must be a gift and make

your life much better. I really hope my will accept the disease and learn

to cope with it, no matter how serious the Stills will be in him.

It is interesting to me to read about people who has a lighter version of

Stills. And now I've joined the JRA-list for children also, and I learn a lot.

Best wishes

Kirsten, Norway

Re: A lighter version of Stills?

Dear Kirsten,

This caught my attention, your idea of a lighter version of Stills.

I probably have that, but it's a misnomer. A lighter version might mean that

your bloodwork comes out pretty normal, and that you don't have any major organ

damage from the disease. Most days maybe you can get up in the morning, do a few

things, not have as much pain as when the disease is more " active " , however it's

unpredictable. You can start the day out great and then go downhill fast with

pain and fatigue, even if you didn't overdo it.

I say it's a misnomer because Still's is a systemic disease- it can affect

everything in the body. Even a lighter version of Still's will give you a fever,

or a headache, or something every minute of everyday. Some symptoms make no

sense and can be pretty disturbing when you first get sick, then you learn to

live with them. You call the doctor when something feels different. Some of

these symptoms are controlled by medications, but don't completely go away.

The way I look at it, if the pain is under control then it's a great day. Can

the disease cause severe pain? Yes, but mostly during flares- not constant,

although everyone 's experience is different. And it's impossible to know if

your life will be completely normal, you are thankful for when it's close to

normal and you take care of yourself when you're not. You learn to live with it,

you take time to appreciate things more. You can have a good life in spite of

Still's, of course- you define how you are going to adapt to living with it.

Kids, or teenagers may have an easier time of adapting to it than those of us

who got it as adults.

Best wishes,

beth

[Guest guest]

Hi Everyone, This was a good time for me to drop in, the topic is

a very good description of me. I thought I might mention the good

life part. My poor brother is still pretty much a mess, as he's been

strong all his life until he got RA. He really can't adjust, and I

understand, but I sure wish I could help him enjoy the interesting

things a sitting person can enjoy. My computer and birds and Rosie

pig and other light things make me as happy as I could want to be.

Because of that, I've been in balance for a decade now. I'm sure

this is the best idea for a weakling. It's kind of an advantage to

be born that way, verses late in life, but I truly love my daily

cycle. Listening to music is something I don't know if I've

mentioned, but there are a trillian things to love, and I mean love

deeply. I wish all the lighter people, and the heavier people as

well happiness. By the way, for me doing these exercises and

activities always results in a back slide, but I also know to " push

the envelope as far as I can. Love you all, Tom

Now where is that spell checker? Rosie is a character, by the way,

and that includes crabby, bored, and generally naughty especialy on

rainy or cold days. I'm kind of expecting to have an old crab on my

hands for the winter! I love her dearly, though.

>

> Dear beth

> thank you for sharing your thaughts and experiences. Reading your

mail get me thinking that you have learned to live with the disease,

and you are thankful and satisfied when you have a time without pain.

That must be a gift and make your life much better. I really hope my

will accept the disease and learn to cope with it, no matter

how serious the Stills will be in him.

> It is interesting to me to read about people who has a lighter

version of Stills. And now I've joined the JRA-list for children

also, and I learn a lot.

>

> Best wishes

> Kirsten, Norway

>

>

>

>

>

> Re: A lighter version of Stills?

>

>

> Dear Kirsten,

>

> This caught my attention, your idea of a lighter version of

Stills.

>

> I probably have that, but it's a misnomer. A lighter version

might mean that your bloodwork comes out pretty normal, and that you

don't have any major organ damage from the disease. Most days maybe

you can get up in the morning, do a few things, not have as much pain

as when the disease is more " active " , however it's unpredictable. You

can start the day out great and then go downhill fast with pain and

fatigue, even if you didn't overdo it.

>

> I say it's a misnomer because Still's is a systemic disease- it

can affect everything in the body. Even a lighter version of Still's

will give you a fever, or a headache, or something every minute of

everyday. Some symptoms make no sense and can be pretty disturbing

when you first get sick, then you learn to live with them. You call

the doctor when something feels different. Some of these symptoms are

controlled by medications, but don't completely go away.

>

> The way I look at it, if the pain is under control then it's a

great day. Can the disease cause severe pain? Yes, but mostly during

flares- not constant, although everyone 's experience is different.

And it's impossible to know if your life will be completely normal,

you are thankful for when it's close to normal and you take care of

yourself when you're not. You learn to live with it, you take time to

appreciate things more. You can have a good life in spite of Still's,

of course- you define how you are going to adapt to living with it.

Kids, or teenagers may have an easier time of adapting to it than

those of us who got it as adults.

>

> Best wishes,

>

> beth

>

>

[Guest guest]

I have to tell you, that i too dont have this illness so bad. I have

aches and pains....and fatigue....but thats about it. I just had bad

blood work for a while and then i couldnt walk due to some swelling in

my knee which prompted my diagnosis. I now live off pills as the

illness got worse, but am fully functional. I dont think i have it like

the folks who write here. I work, play and workout out etc. i think i

just get fatigued faster than everyone else does. hope this helps.