-rash

[Guest guest]

Girl, I was you at one time!In fact my husband and I were just talking about the

early days this morning because I woke up with " the Rash " today!I too imagined

that I wouldn't ever have a problem again after my initial onset and of course

it had been 5 years and I still didn't know the name for what I had!I did have

intermittent fevers and some joint pain,but hey,I was getting older and would

always catch whatever my grandkids got!I was a young Grandmother at the tim

42,with 2 granddaughters.And I was tired!

Well hello Mr. Dragon.Back for a visit?I was in the bathroom and looked at the

tops of my thighs,you guessed it the RASH was back,I actually watched as my skin

got redder and the spots appeared.Now my rash hurts,so in no time I was actually

crying,and my throat was on fire.I called my husband and we went to the ER

because by then my whole body felt like a charlie horse and I yelled any time I

had to move!They kept me 17 days that time,fever every afternoon at 3p.m.

lasting til 5a.m. 106.7-107.Ice bed,numbers were very bad,one intern asked if I

had been diagnosed with leukemia? I had not,just part of the Dragons fun!That

was probably the worst flare so far,yes I said so far.I have had others and meds

have been added and subtracted and my doc does call me The Queen of Denile!but I

know now that this is a chronic illness,meaning it will never go away!I don't

mean to sound harsh,but if you think you are all better or " cured " you are in

for a lot of heartache

and you may miss a symptom that your doc needs to know about.I live on the

premise that if I feel good today I am happy,but I also tend to over do it and

if I hear the words baby steps one more time from my doc I will seriously kick

him at my next appt.

I know this post sounds discouraging,but this is the bad part,the good part is

remission,which occurs to so many for even years at a time.I hope and pray for a

cure,not just for myself,I'm getting up there and that's just not realistic for

me,but for you younger people,my kids,their kids etc. I would like to leave this

earth knowing they will have it easier.

Please keep your spirits up,we are all so different in how Still's reacts to our

personal bodies and what meds work for one and not another,but I think the

medical world is working harder than they had previously,maybe not faster,but

working still.I wish you good health and much happiness and don't let Still's

rule your life.

love Elly