ankle update

[Guest guest]

Hello everyone,

Just wanted to give an update on where I am with pressure sores,

amputations, and the such. I went to another wound care center at

Arkansas Heart Hospital that my pharmacist encouraged me to try.

Bless my pharmacist's heart, sometimes he is the best hope I hold

onto with all of my ailments. He doesn't let me give up and he's

very good at helping me sort thru the medical chargin. Anyway, at

the wound center they want to treat me using the hyper baric oxygen

chamber and feel very positive that they can heal my wounds. During

my exam, the dr noticed that I have alot of swelling and fever in the

ankle that was fused so he took x-rays. Unfortunately, he found that

the screws have slipped considerably and it appears that I have

osteomylitis in the site where the fusion failed. So.... I am off to

see another orthopedic dr today to see about a bone culture

(insurance request this before they'll cover HBO chamber) and see

what his recommended treatment will be. If I come up with more crazy

ideas (like the one who wanted to amputate) I WILL BE TAKING

CATHLEEN'S ADVICE AND CALLING MDA TO GET HOOKED UP WITH DR'S IN

MEMPHIS. Which brings me to my main reason for this post... I find

it very sad that we have the potential to hurt each other here. I

know for myself, and I'm sure for most of us, this is the one place

in my world where I can openly discuss my medical issues, my personal

fears about CMT, share my ideas of what does (or doesn't) work and

basically let my hair down. Even my family doesn't know some of the

things you guys do... things like how worried I am about my son and

how he will handle his CMT as he progresses; that is my greatest pain

and regret about CMT... that I passed it on to him. These are things

I can't even say to my husband(who is still in denial about the boy

having it)but I can share it with you all. And then there is the

hope and joy I get when Gretchen shares the latest news in research

with all of us. It would be so much harder to face this without hope

and compassion. That is what I get here, and that is a big part of

what helps me get out of bed in the morning. I think it is ok for us

to not all agree all of the time, but I don't think it is ok for us

to voice our disagreements with a tone that is unkind and less than

charitable. So, Cathleen, I hope that you can put this behind you

and understand that we're not all going to always agree about

everything but, like a family, we are bound together and we all need

each other. I bet there are times when you don't always like all of

your blood relatives, but you work thru it because they are a part of

you. I hope you can do that with us, your CMT " family " . We all

really need to stick together.

Your sister of the heart ( and nueromuscular system,LOL)

P.S.

I think I should probably say I apologize for not understanding your

comment one time about being able to laugh at ourselves...I'm still

growing and maturing with all of this. I hope you and everyone here

can be patient with me. Sorry this got so long.