Not me

[Guest guest]

Sorry ... I should have been more careful.. I'm sorry.

I think maybe I was speaking of another new Introduction - it was

posted earlier on Friday. The name of the person is neither here nor there,

I am not meaning to cricitize him for expressing his feelings.. I'm just

expressing my honest reaction. It definitely is frustrating to think of all

the things one " could or used to " do pre- CMT; there's grief and loss

involved at all levels. I certainly can't equate feeling sad because I

can't wear high heels, jump, use many of my toes or stand up for long periods

of time with feeling grief and anger because of being in a scooter or

requiring constant full leg braces. Nonetheless, the anger and sadness

exists. . I battle every day not to focus on that though, because I will

become depressed. I can also choose, however, not to read or focus on things

that do depress me so I certainly understand that other people should be able

to express their true feelings without editing...

Thanbks for correcting me .

- Marti

[Guest guest]

I just wanted to express how I feel about having CMT. When I was diagnosed

and I had all ready seen the problems other family members had gone through

and the financial woes they had living on disability, I cried all the way

home from the doctor. Then after I thought about everything I have I was OK.

My sister in law told me she was depressed for me and I told her not to be, I

have 3 beautiful daughters , a husband who understands and cares and we would

live with what we had to. In January of this year I had to make a decision

about working. When I was working I came home so worn out, legs and hands

hurting and it took everything I had to walk in the house after work. So I

quit. I decided that I wanted to take what energy I had during the day and

put toward raising my family. We don't have all the extra money and may not

be able to do everything we want to but when we have time together I am not

so worn out and sore that I can't enjoy it with everyone else. I was to the

point that I was either at work or in bed. So like I told her, I don't know

what to expect but I will take it one day at a time. Mu aunt who really needs

AFOs will not get them because she doesn't want look funny. What I told her

was that I would rather have people stare than not be able to get around. If

it comes to going to a wheel chair or scooter I really don't think that will

bother me either. I am very lucky to have a great support team: my husband ,

my girls and friends that understand that they may have to slow up activities

for me but we are going to have a great time any way. Thanks for letting me

share. I have had a day where I just needed to express what I feel.

Danieta

[Guest guest]

No offense , I'm glad that you spoke

honestly, but hearing your long list of the things that you " can't do

anymore " because of CMT, really depressed me

I do hope there's another on the list...i did not make a list of things

that i can no longer do......I'm