Welcomes and tidbits

[Guest guest]

Good morning, afternoon, evening all,

I'd like to say welcome again to the newer members of the group. It's nice

to see new members posting.

There are several experiences and bits of advice that come to mind as I read

through the posts since yesterday.

Most everyone knows me, even the new members from my welcome but not always

knowing that my Still's was diagnosed when I was 19, 31 years ago. It was

diagnosed very fast for those days in a matter of months and I still have

the same RD today. It was most all those years before ANYONE had ever heard

of Still's disease. I had met a total of TWO people that knew what it was

and one of them had it, was working in a hospital and in remission. All

those years until I found this amazing group in 2001. I would like to say

and remind the newbies that we do have free brochures for the asking by

sending your postal mail address to our treasurer, Bob Himes at

Oldgoat378@... He will be happy to send you some free of charge as

that is part of the work the International Still's Disease Foundation does.

I too was able to work a short period in my third year of stills but not for

long and then tried to go back to college to further my degree and had to

drop out because my Still's was just too severe at that time. I was also

raising my daughter as a single parent and not able to return. The point is

though that I could today and I could have many years since. I did however,

go on to own my own businesses, manage others and when able to work at

different times, was quite successful. Still's often forces us to reevaluate

our goals and career choices but it is doable. Sometimes I had to move back

to my family home or have roommates. That may be another option for those

that just cannot handle their mother's?? ;0) For long anyway.

Another point I wish to address today is that we should not forget that

although Still's throws us into the most emotional tailspin we will probably

ever experience in our lives just with the diagnoses and learning to live

with a chronic and often critical disease, there is also the medication side

effects that we cannot discount! For instance, many do not realize that

Prednisone, or Steroids if you will, does cause insomnia to a great degree.

So, if you weren't already an insomniac and it's not just the diagnoses

spinning in your head, it is quite likely that the medication is causing

some if not much of this condition. Please TELL YOUR DOCTORS YOUR SYMPOTOMS

All of them. We cannot tell you enough how important it is to jot them down.

Just a short note so as not to forget what you need them to know because

there is help available and we cannot be treated fully when our doctors

aren't aware of the whole body and mind symptoms that come with this

disease.

OK, I think I've shared quite a lot for the day. As I said it's very good to

meet so many new members and please send in for those brochures to give to

your ER, doctors, friends, family and whomever may take one.

Lots of love and light,

_____

From: Stillsdisease [mailto:Stillsdisease ]

On Behalf Of ashley diteman

Sent: Wednesday, August 13, 2008 9:17 AM

To: stillsdisease

Subject: RE: Rashes

Hi, I'm ....I havnt written anyone yet, but I get The rash u are

Discribing...Almost everytime I get a Flare up...It awfull, When i first got

sick In 2001 I was on Life support whe the rash started. I was red from head

to toe...just like u discribed, and i peel over my whole body,I have done

this about 4 or 5 times since, and a couple have been with itching

to...which let me tell u is hell on earth....anywho, I just wanted to let

you know about that.

ashley

To: stillsdisease@ <mailto:stillsdisease%40yahoogroups.comFrom>

yahoogroups.comFrom: heckcatgmail (DOT) <mailto:heckcat%40gmail.comDate>

comDate: Wed, 13 Aug 2008 11:28:06 -0300Subject: Rashes

Hi all,I've seen several sites that have pictures of the Still's rash

(includingour own http://www.stillsdi

<http://www.stillsdisease.org/stills_rash> sease.org/stills_rash), but mine

was nothing likethat. My hands and feet swelled a bit and turned

purplish-red. The best wayto describe it is the look of a really really

terrible sunburn on very whiteskin. It was solid, not blotchy, and travelled

halfway up my arm and ankles.It eventually faded, and was never itchy or

uncomfortable, other than theswelling. But my torso and upper legs and arms

were clear.(oh, and the real fun started when the swelling and rash

disappeared, andall the skin peeled off my hands and feet... and everyone

was calling melizard )But is that unusual? And while I'm still in a

flare-up, should the rashstill be there? Do you always get rashes with

flares, or just the fever/sorethroat/etc? How do you define your

" flares " ?Thanks!