Re:New to Group. Questions about Still's

January 7, 2009

Anielle,

Welcome . I am so sorry to hear about your little one.

I don't post often,as I am now in remission and can't type well with my fingers

crossed.(lol)

I became ill while I had 6mos. old and a 2 yr old .My husband works long hours

away from home and I have no family near. So I know what it is like to feel fear

and uncertainty for you child. At one point I did not know if whatever mystery

illness I had was contagious, would kill or cripple me for life or if I would

ever be able to walk or care for them.

My GP kept telling me that I was just tired and stressed out.(depressed) I

kept trying to tell her that I was ill and that I have been healthy all my life

so I darned well know when I am not anymore! It a trip to the emergency room

months later (by then I could not even get on or off the toilet without crawling

because my knees & shoulders were so bad I couldn't support my own weight with

either) before a shocked and sympathetic doc. sent me to a specialist.Many tests

& 3 months later I had a diagnosis.Within days of starting medication MX and

Pred. I was feeling better.I took the pred. for 15 mos and the Mx. for almost

3yrs. I only take Tylenol now occasionally.

I did not find this group until after I was in remission.I did not know much

except a little that I read online and my own experiences.I still cry now, to

read a lot of posts because I just couldn't cry then.It can be so overwhelming

to know that you aren't alone and have confirmation that you were really ill

after people telling you that you were just " run down " (hit by a Mac Truck is

more like it)

Anyway I have gotten off track, point is for me, all of the stories while

relevant and comforting may have been too much information and scary while I was

in the middle of it.Because the truth is, that as much as we all have in common,

every single case has differences also.Age, general health,symptoms,what works

what doesn't, etc.

So take the advice, the support, the love that is offered here, but don't get

overwhelmed or scared with all of the individual stories.You are writing your

own. And as a mom ,I know you are terrified at the thought of your darlings

pain,but remember many of us get almost complete relief with treatment.

Wishing you comfort, and sending a big (((hug)))

.

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