Welcome Colleen

[Guest guest]

Thank you so much for your response. I'm so glad that I found this site.

This is surely a horrible disease, but I keep telling myself, it could be so

much worse!

Thanks again

[Guest guest]

xycollxy@... wrote:

>

> Thank you so much for your response. I'm so glad that I found this site.

> This is surely a horrible disease, but I keep telling myself, it could be so

> much worse!

> Thanks again

Hi,

Last November my son Josh was in the middle of a big flare. We needed to

fly off-island and spend a week at the Shriner's Hospital for Children.

Well, we didn't actually know it would only be for a week. We were

expecting maybe two weeks to a month, according to what one of his

rheumatologists had said. But his condition showed signs of improving

even before we were to try the IV pulsing of steroids, which we wound up

not having to do at that time. Well, Josh hadn't been feeling physically

well for about 4+ weeks prior to this hospitalization. And he had also

started to feel somewhat depressed. Tired of feeling sick and tired,

despite all the heavy meds he takes everyday. Just not well. But....

His stay at the children's ward really was an eye opening experience.

For both of us. He was the only child there at that time who had

systemic JRA. He had a lot of physical pain as many of his joints were

hurting and the morning and evening fevers made him feel run down and

tired ... but meeting, getting to know and spending time with all the

other children that were there, for many varied physical problems,

really made him see things in a different light. While he was upset at

first that it hurt so much that he had trouble getting out of bed and

walking, he saw other kids who were paralyzed from the neck down. And

others who were strapped onto slant boards and casted from the hip to

the tips of their toes. Kids who would have loved to have been able to

get out of that position and actually walk, even if it hurt to do so. He

saw children who had accidental amputations and were missing limbs due

to lawn mower and car accidents, who cried out during their difficult

but necessary physical therapy exercises. While soaking in the hot tub

helped his limbs loosen up so he could move them better.

It gave him a completely different perspective on this illness. He was

no longer depressed. Instead, he seemed very grateful. Not exactly

grateful that he has JRA and has to take so much medicine to control it.

Just grateful that it's something that he can cope with.

Take care,

Georgina

[Guest guest]

Welcome Colleen,

Just get out there are live life to the fullest, don't waste a day in

worry, wondering or pity. You are right, everyone's CMT is different,

and you are so young, with so many advantages to help your CMT. Take a

look at our Vitamin C files and past posts on how our members take good

care of themselves.

I was 10 when I was diagnosed. Now I am 53, with little/no progression,

and am extremely active and happy in all areas of my life

Thanks so much for posting your introduction. I hope you find to

be both helpful and hopeful.

~ Gretchen (Founder and Moderator - )