Hi Everyone from Maree & !!!

August 22, 2010

Hi All!!!

Sorry I haven't posted in a while.... had a really bad flare and I was

really frightened. I am still learning as I go along and every new thing

frightens the heck out of me. I thought she was bad before but this last

week has shown me that those were her " good days " . She could not get herself

out of bed, she had a temp and her rash had gone ballistic. I think I get

so scared because she can't communicate and I don't know what else might be

going on that I can't see!!! Nevertheless she got over it in about 12 days

and then had a week of even worse pain and stiffness in her legs. This week

though she looks happy and much brighter. She is up and about and eager to

go to her day program. Thank God... I can breathe easy for a while

.......maybe her meds are finally kicking in..

Also , I don't know if anyone can help, I've been trying to get the Mystery

Diagnosis episode that Nissa is on but it doesn't allow me to buy it online

because I live in Australia. Is there another way I can get a hold of it?

There is not nearly enough stuff about Stills out there for families like

us. I think it would be helpful for us to see it.

Thanks to you also , we received our card at just the right time.

was so sick right then and it helped knowing that others out there were

going through the same things and were thinking of us... loved the

teddy on the front, Thanks xxx

August 23, 2010

Hello Maree,

I'm glad liked the card but oh so sorry she got sicker. This disease has a

way of doing that sometimes and can go back and forth at times for no apparent

reason. Sometimes I needed to live with my mom and she would have to carry me to

the bathroom at night. Yes all 5'11'' of me but I only weighed 107 lbs at the

time. The point is, it can be better and worse and the medications can help but

sometimes it takes time. Write to us when you are scared, IF you have the energy

and time and we will be here for you. Many hugs and smiles for your days.

" Maree Pilakis " wrote:

had a really bad flare and I was

> really frightened. She could not get herself

> out of bed, she had a temp and her rash had gone ballistic.

> ......maybe her meds are finally kicking in..

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