Re: Hello everyone.

[Guest guest]

Welcome . looks like you have been down along road. A hard road, like so

many of us. So many docs do not have a clue. Sounds like you finally found

someone who knows the score.

The new xrays are for him to have a current baseline of any perm damage.

I am on vacation and tring to type this on a tiny smart phone keyboard. not

easy on the best of days. Today is not one of my best. But I did want to give

my welcome to you.

Tom from PA

>

> As you can probably guess, I'm new here.at

[Guest guest]

 welcome and hope you find some spin relief here for your self . I still

remember the day I was told " you have AOSD it was like wow a name finally but

what the heck is that . I turned to the Internet and research and the more i did

the more I spun and got scared also. Now days I live each day one at a time and

do the best i can with the day given .

 About the test and blood work . it is normal that people with stills can also

have other things related to it or with it . for me it is stills ,fibo,

depression ,and cardiovascular disease and a few other small who cares things .

having a good work up and testing I believe is a good thing as it gives a good

base line were your at right now.  if things change for the good or worse you

and they have it to go from . I know for my self all the testing that was done

before my dx most i had never heard of.  i know now if I ever develop cancer I

have a great base line to work with to may be get it in the very early stages . 

At first that is what every one thought i had and they were looking hard for

were and what kind tell every test they could do almost was done and nothing was

found .the reason I say cancer is it is heavy on both sides of the family from

dad up so far and two scares with my sister and one with me so that's why

nothing to do with

stills at all but I am glad for all the testing that was done because of it .

now for the head spin lay back tell your self it is from the party last night

you mind had and slow down as best you can Listen  to your body as in when to

rest and when to play and how hard . ask away here as some one most likely has

been there or done that before you and if not then we all learn from you also so

welcome to the family .

 

the  rednecks

Marty & G.

the redneck's my space http://www.myspace.com/martyg58

 

 Stills ; An illness I know to well!

To learn about Stills  http://www.stillsdisease.org/stills_info

If you find yourself in a hole, the first thing to do is stop diggin'.

 

In the old days a man who saved money was a miser; nowadays he's a wonder. 

~Author Unknown

 

" Taking my gun away because I might shoot someone is like cutting my tongue out

because I might yell `Fire!' in a crowded theater. "

-- Venetoklis

 

a government and its agents are under no general duty to provide public

services, such as police protection, to any particular individual citizen...

-- Warren v. District of Columbia, 444 A.2d 1 (D.C. App.181)

[Guest guest]

Hello

You did the right thing by joining this group. You will get plenty of

information and support here. I was 16 when I first got sick. My friends were

very

supportive. My brother and sister too, but they were married with kids and a

bit busy. I remember my cousin Dennis coming to see me in the hospital, He

was 8 years older than I and I only would see him maybe 2 times a year...well

he came, he sat there and wanted to know if he could do anything for me. Now,

he is turning 60 and about 20 cousins of every generation are taking him on a

cruise to Baha. cause he has done many many nice things for people thru the

years......anyways....the point being, the most unexpected people will step

in to help you. You will never forget them.It took about 8 months, but I did

achieve remissions lasting 9 years on 3 occasions. Now, I just get a hodge

podge of rheumy symptoms and deal with them when they sneak up on me.

I am sure that you will be able to reach your dreams and maybe even further

cause of this disease. When you start to feel well, and you will, wow! You

will really appreciate it and the sky is the limit.

Give a hug to your folks for me and Welcome...ask anything you like, read a

little or a lot, post when you feel like it...Oh we are all really silly and

have cyber party's..

Hugs

Liz

b1956

Stills 1972

2 kids hubby, RN too

**************Looking for a car that's sporty, fun and fits in your budget?

Read reviews on AOL Autos.

(http://autos.aol.com/cars-BMW-128-2008/expert-review?ncid=aolaut00050000000017

)

[Guest guest]

Hey , I'm newly diagnosed too (a month ago), although it was during my

first flare up of all this fun. What would we do without the internet to

inform/scare us?

I won't be a good source of info (too many questions myself at this point!),

but at least as newbies to this (and likely guinea pigs to our doctors), we

can compare notes.

Welcome to the group

>

> welcome and hope you find some spin relief here for your self . I still

> remember the day I was told " you have AOSD it was like wow a name finally

> but what the heck is that . I turned to the Internet and research and the

> more i did the more I spun and got scared also. Now days I live each day one

> at a time and do the best i can with the day given .

> About the test and blood work . it is normal that people with stills can

> also have other things related to it or with it . for me it is stills ,fibo,

> depression ,and cardiovascular disease and a few other small who cares

> things . having a good work up and testing I believe is a good thing as it

> gives a good base line were your at right now. if things change for the

> good or worse you and they have it to go from . I know for my self all the

> testing that was done before my dx most i had never heard of. i know now if

> I ever develop cancer I have a great base line to work with to may be get it

> in the very early stages . At first that is what every one thought i had

> and they were looking hard for were and what kind tell every test they could

> do almost was done and nothing was found .the reason I say cancer is it is

> heavy on both sides of the family from dad up so far and two scares with my

> sister and one with me so that's why nothing to do with

> stills at all but I am glad for all the testing that was done because of it

> . now for the head spin lay back tell your self it is from the party last

> night you mind had and slow down as best you can Listen to your body as in

> when to rest and when to play and how hard . ask away here as some one most

> likely has been there or done that before you and if not then we all learn

> from you also so welcome to the family .

>

> the rednecks

> Marty & G.

> the redneck's my space http://www.myspace.com/martyg58

>

> Stills ; An illness I know to well!

> To learn about Stills http://www.stillsdisease.org/stills_info

> If you find yourself in a hole, the first thing to do is stop diggin'.

>

> In the old days a man who saved money was a miser; nowadays he's a wonder.

> ~Author Unknown

>

>

> " Taking my gun away because I might shoot someone is like cutting my tongue

> out because I might yell `Fire!' in a crowded theater. "

> -- Venetoklis

>

> a government and its agents are under no general duty to provide public

> services, such as police protection, to any particular individual citizen...

>

> -- Warren v. District of Columbia, 444 A.2d 1 (D.C. App.181)

>

>

[Guest guest]

My arthritis was severe in the beginning and minor later. The fatigue for me

was hard to overcome. However, when I say remission I mean I was healthy

and normal....CCU RN, 60 hours a week..dancin.on Friday nights till 4am in

NYC......I mean normal...The remissions lasted 9 years. Then wam...8 months

again..not as bad as the beginning Then another good 9 years.... But that's

me.

Now I ahave more chronic stuff...not totally great but I am 52 years

young.... Everyone is different

Liz

**************Looking for a car that's sporty, fun and fits in your budget?

Read reviews on AOL Autos.

(http://autos.aol.com/cars-BMW-128-2008/expert-review?ncid=aolaut00050000000017

)

[Guest guest]

Just curious... when you all mention remissions, do you mean relief from the

RA symptoms, or just the fever/rash/sore throat/exhaustion flare ups?

I think I could learn to deal with RA, if I could just get through this

other crap. Not that it is a boatload of fun...

>

>

> Hello

>

> You did the right thing by joining this group. You will get plenty of

> information and support here. I was 16 when I first got sick. My friends

> were very

> supportive. My brother and sister too, but they were married with kids and

> a

> bit busy. I remember my cousin Dennis coming to see me in the hospital, He

> was 8 years older than I and I only would see him maybe 2 times a

> year...well

> he came, he sat there and wanted to know if he could do anything for me.

> Now,

> he is turning 60 and about 20 cousins of every generation are taking him on

> a

> cruise to Baha. cause he has done many many nice things for people thru the

>

> years......anyways....the point being, the most unexpected people will step

>

> in to help you. You will never forget them.It took about 8 months, but I

> did

> achieve remissions lasting 9 years on 3 occasions. Now, I just get a hodge

> podge of rheumy symptoms and deal with them when they sneak up on me.

>

> I am sure that you will be able to reach your dreams and maybe even further

>

> cause of this disease. When you start to feel well, and you will, wow! You

> will really appreciate it and the sky is the limit.

>

>

> Give a hug to your folks for me and Welcome...ask anything you like, read a

>

> little or a lot, post when you feel like it...Oh we are all really silly

> and

> have cyber party's..

>

> Hugs

> Liz

> b1956

> Stills 1972

> 2 kids hubby, RN too

>

> **************Looking for a car that's sporty, fun and fits in your budget?

>

> Read reviews on AOL Autos.

> (

>

http://autos.aol.com/cars-BMW-128-2008/expert-review?ncid=aolaut00050000000017)

>

>

>

[Guest guest]

,

For me my doctor said remission was no active joint inflammation, no fevers,

labs being within normal ranges for an extended period of time and off all

disease modifying medications. Morning stiffness lasting no longer than an

hour each day. Although I felt pretty good for a while, it took years for

him to actually say the word remission so don't lose hope. The tiredness

might be another story. That to some extent stayed with me on and off during

different times over the years and was very discouraging but has finally

left for the most part. At times of overdoing it I still get exhausted and

then have to have sometimes a whole week of down time. But then, I go full

out and live to the fullest when I feel good enough to do so ;0)

_____

Just curious... when you all mention remissions, do you mean relief from the

RA symptoms, or just the fever/rash/sore throat/exhaustion flare ups?

[Guest guest]

,

So sorry you have had such a tough long road, and a familiar one. My name

is and I've been dx'd with stills since 2004, but sick with fevers

and joint pain like you all my life. I'm now 43. I started to flare in

2000, really bad in 2001 and went to a RD in 2002. I haven't truly had a

remission since then. I'm switching from Kineret to Orencia in the next

month and I'm really hoping that it will help me go into remission. Others

have gone into remission so I have faith that I will too. I recently broke

my foot in two places just by walking (ah- the problems with steriods - even

low dose steriods.... So now I have tow stress fractures in my foot with a

cast and I'm not allowed to put any pressure at all on it, oh well - that's

the way the cookie crumbles sometimes.

so now it's just day by day and wait for Orencia - which I wonder if any one

else has taken it and if it has helped them.

Anyway, I hope that you feel better, that you go into remission quickly!

Take care of yourself - and welcome to the group.

[Guest guest]

Hi

Welcome to the family. I am sorry that you have had to suffer to meet us.

It was unfortunate that you were so long in being diagnosed I think doctors

are recognising more quickly now. Anyway just to say a quick hello and hope

we may be of help to you when you need some.

Hope today has been a better day

Best wishes

Joan U.K.

[Guest guest]

..

no way ....a fellow Wisconsinite with Stills....yo dar man what part, snowy nort

or futher south? flat man east over dar hill west. LOL...:>) where ever weclome

aboard..gota love the Browndeer/ Milwaukee area... I travel the State a lot...

can you tell..

Alan From Janesville, Wisconsin...

can't get much further south without hitting the boarder of the USA,, I hear

underground history has it we were forced to join the Union...But how should I

know... I grew up in Chicago land.. Been a transplant here for 37 years,,,,, I

love Wisconsin...............

[Guest guest]

 for me the docs never said that word remission ever. but what i call it and

what i did as said the tiredness stays some what but no meds at all and

for the most part I even felt normal staying out late dating and riding my

motorcycle all over the place including 160 mile one way trips . I felt so good

I was planing a cross country ride from coast to coast if i could get the funds

saved . now back on meds feeling almost like at fist but not as bad . like to

day I have slept almost all day but two hours now. I hurt again not as bad but

enough to stop me from doing and well so bad I sold my bike and  do not ride any

more as the vibrations got to me in a bad way. I am now swelling bad and always

tied again . now I am not looking forward to the bad times if it runs as long as

the first time but boy o boy I am looking forward to the good times again as it

lasted about 4 years and from reading all the others postings on it I do look

forward to it and

not what i am doing now except that i am closer to the good possibly again then

I was yesterday LOL so as has been said it all is what and were you see it and

your docs .

 

the  rednecks

Marty & G.

the redneck's my space http://www.myspace.com/martyg58

 

 Stills ; An illness I know to well!

To learn about Stills  http://www.stillsdisease.org/stills_info

If you find yourself in a hole, the first thing to do is stop diggin'.

 

In the old days a man who saved money was a miser; nowadays he's a wonder. 

~Author Unknown

 

Just curious... when you all mention remissions, do you mean relief from the

RA symptoms, or just the fever/rash/sore throat/exhaustion flare ups?

I think I could learn to deal with RA, if I could just get through this

other crap. Not that it is a boatload of fun...

On Sun, Aug 3, 2008 at 9:39 AM, <lizdaly101aol (DOT) com> wrote:

>

..

" Taking my gun away because I might shoot someone is like cutting my tongue out

because I might yell `Fire!' in a crowded theater. "

-- Venetoklis

 

a government and its agents are under no general duty to provide public

services, such as police protection, to any particular individual citizen...

-- Warren v. District of Columbia, 444 A.2d 1 (D.C. App.181)

[Guest guest]

Thanks to everyone who responded. I'm so happy I found such a caring

group who can relate to what I've been through and who've given me

such wonderful advice as to what the potential future has in store for

me.

Alan, actually I live in ville, just south of Madison, so we're

pretty close!

Thanks again, everyone. You've really helped me through this =)

-