Re: replies to bad news that scares me

[Guest guest]

,

When I was 39, following a car accident, I was facing a foot

amputation because of an infection that was in the bone and did not respond to

medication or treatment.

~ Gretchen

[Guest guest]

~

I think that no one knows your body more than you. It's not up to

anyone else but you to decide what you choose to or not to do with

it. Yes amputation is serious but you have already stated that you

know that and understand that. I am quickly learning from this group

that CMT affects everyone differently and to many different degrees.

It sound to me like you have been trying everything you can think of

to avoid amputation, which is very commendable. However, at

somepoint there might not be any more options and if the benefits

outweigh the loss of a limb or part of one, and if it's the only

option left, then you should do whats best for you. I think people

only come across as strongly opinionated when they care too much.

But caring too much can blind them to the harsh facts about that

person's situation, because they can't imagine being in that position

themselves.

I myself got carried away by my comments the other day and I am thankful that

you were there to set me straight. You helped me see things from a different

perspective which is what I needed. So I am hoping to return the favor by

posting this reply for you. Stay

strong in your belief in what's right for you. And don't listen to

others' judgments about you because it's not them in your shoes and

so it's almost impossible for them to empathise with you. I hope you have a

good day today.

Jane

[Guest guest]

In a message dated 9/6/2007 6:33:52 P.M. Pacific Daylight Time,

augold123@... writes:

>really think Gretchen was just waving a concerned caution flag your way

regarding the road you are considering taking.>

I have known Gretchen for years and have to agree here. She would never jump on

anyone about a personal medical decision. One reason she created the list is so

we could all share experiences and exchange information in a positive format. I

remember when she was in the hospital for weeks with a horrific infection that

could have gone into amputation. As far as this stuff goes we all live in glass

houses.

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[Guest guest]

,

Though I tend to be a rather 'salty' kind of guy, I really think Gretchen was

just waving a concerned caution flag your way regarding the road you are

considering taking.

I have SEVERE CMT, and, like you, have 'considered' amputation. But after having

visions of myself as a human potato being rolled around everywhere, I decided on

keeping the feisty appendages. lol ;-)

Best wishes to you in your situation, though.

[Guest guest]

Hi Jane:

Thank you for the support. I am firm in my commitment to staying as

healthy as possible which for me means maintaining as much mobility

as possible. For me, this isn't a decision based on anyone elses

judgements of the situation beyond my immediate family. My husband

and I have talked about it extensively and he assures me that he will not find

it repulsive and only wants what is best for me and

ultimately us.

My two adult sons also support this decision. My oldest is a PT student and has

been very helpful in answering questions from a rehab stance. The funny thing

about this is my original post was one of information seeking. I truly am

looking for instances of CMTers who have had amputations and how successfully

they were physically. Luckily, O understood my questions and

was able to give me a very helpful site to look at. I appreciate

anyone's concerns regarding this decision, but as you say, it is mine to make,

and being kind of a " salty " girl, I am confident that I will do what is best for

me in the end. That doesn't mean that it doesn't scare the hell out of me. My

trust in doctor's is not much to say the least. But, again Jane, thank you for

the kind words. They are greatly appreciated.

By the way, I think you have me confused with another regarding the " kids

falling " post. There seems to be an unusual amount of 's in this group!

in AR

[Guest guest]

Dooley noted about the s. I hadn't realized that so thanks for

the heads up. I'm glad for you that you have a husband who sees you

for you and not what you can/cannot do. That's true love and

devotion. If I ever found myself in that position I don't know what

I'd do. I already have major issues from the way my arms and legs

look and if one of them had to be amputated I'd probably go nuts. My

husband would still love me, I know this but I don't think that would be the

issue...I wouldn't see myself the same as before and so wouldn't understand if

anyone else could/would overlook what was missing.

It's all psychological I know but I've always been like this since

grade school.