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Hello, my name's Lou and I'm an above the knee amputee, for about 2 1/2 years

now, and I've got nasty chronic stump and phantom pain. It's a pleasure to find

a well moderated group with other people in the same boat. I'm very much in need

of that connection and support.

Just reading some of the recent posts, I feel at home. I have the worlds most

supportive husband, but I've been somewhat isolated, partly from mobility

problems and partly by choice. In some ways this time of alleged isolation has

been good. It's given me a time of quiet and peace to come to terms with living

the gimp life. There's been a steep learning curve for even the most basic daily

movement.

I've come to accept that my stump defines most aspects of my life. It only

allows me to sleep for 2 hrs at a time, then it wakes me up. Nerve pain beats

any alarm clock. So I'm usually sleep deprived, 5 hours in an hour or two

segments is a great night.

My pain control is currently lousy. I'll talk more about that later. I did

manage to get a referral to a pain management clinic again, and I've got my

fingers crossed they accept me. My primary care is strongly opposed.

I look forward to getting to know everyone. You all have so much to teach me!

Glad you're here.

Lou

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I'd just like to express my condolences about your " stump " . I can only

imagine what that is like.

Welcome to the group, please know that we are all here for you. Don't feel

guilty if you need to rant.

If you want or need to talk off group, please feel free to email me

SteveMatrese@...

A positive note about your leg (I hope that you take this as a positive and

aren't offended). You're actually lucky in a crazy ass-backward kind of way.

For many of us, one of the biggest issues we face is that people believe

that because we look normal, we simply can't be disabled. You have no idea

how many of us have wished we had a stump to show people when they doubt us.

I'm not saying you're lucky, but I'm saying that when you're feeling " down " ,

just remind yourself that your lucky that you don't have to fight the

invisible disability battle.

I'm really glad you found us and I hope we can help.

Steve M in PA

Married with 3 year old daughter

Grade II DIPG (Diffuse Intrinsic Pontine Glioma)

Fibromyalgia

Probable RSD

>Lou wrote:

Hello, my name's Lou and I'm an above the knee amputee, for about 2 1/2

years now, and I've got nasty chronic stump and phantom pain. It's a

pleasure to find a well moderated group with other people in the same boat.

I'm very much in need of that connection and support.

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