Progression changes, help requested

[Guest guest]

Hello,

My name is . I've posted here a couple of times, but I've never really

introduced myself.

I've had CMT my whole life. My Father has it, my grandmother had it, 3 of my

brothers,1 sister and numerous nieces and nephews have it. I've learned to cope

with it from the start (not to say it's been easy).

The reason for the subject I'm writing about ( " help " ) is the at this time I'm

feeling like things are coming completely undone. Through most of my life I've

gone through, what I call, " slips " . This means that my CMT will effect another

part of my body in some way and it takes a while for me to adjust to it both

physically and mentally. Up to about 2 1/2 years ago I went throught these

stages with help from alot of drugs and alcohol. Now, I'm a mess.

Being able to see the stages of this disease didn't help much either. My

siblings are all older than me, with my brother being 20 years older and my

father being 82, I am able to see the stages of CMT clearly. I've liked to say

that I understand and can live with my reality, but I'm finding out now that

that is a lie.The cruelty of this disease and the random way it progresses also

is difficult. My nephew has CMT and he plays baseball, his younger sister

couldn't walk after age 5.

10 years ago, I lost my right thumb (lost is the word I use when loss of muscle

mass happens in an area, rendering it pretty much useless). I could not really

hold anything between my thumb and fingers. I have to " grab " . I was able to cope

by learning to use my left hand. Now, here's where the trouble begins. 1 year

ago I began to " lose " my left thumb. Now, it too is pretty much useless. It

feels a little like when a diabetic starts losing parts (sorry if that offends).

Surgery will help, but it's very expensive and requires 6 weeks of complete

downtime, muliplied by both hands because it is too painfull to do both at the

same time. I know this because my sister just had it done.

My foot is beginning to roll again (I had surgery 12 years ago) and I've

developed a painfull bunion on the ball of my foot and some callous bone on the

side. In order to fix the bunion, they want to do a new adjustment surgery and

that's 8 weeks of " on your back " recovery

Everything feels like it is coming apart. My carrier requires that I am able to

use my fingers (CAD drafter). I'm only 38 yrs. old and if I'm this far already.

Simple pleasures like bringing a can of pop or a glass of iced tea are gone.

Everytime I do this I have to worry whether It's gonna slip outta my hand or

not. Hell, if I drop a dime at the grocery store, I leave it instead of taking

the long embarassing time to try to pick it up.

I have a hard time just buttoning my damn pants!

I was on Social Security disability before but this was used as a means to not

have to work (I was perfectly ok then) and drink and do drugs. Eventually I went

to school so that I could get off of SSD and now the idea of going back is

killing me. My wife is considerably older than me (12 yrs.) and the idea of

making her support us is absolutly ripping my pride and ego apart. We bought a

house last year and now I've lost my job. I know I will get another one, that is

no problem, but in reallity, I don't know how much longer I can maintain.

I feel like I've come to that inevitable edge that I knew was there, but tried

to ignore, without a choice to go foward or not.

I do belong to a 12 step program (my sponser is the one insisting that I write

this) and I trying to live towards a spiritual life rather than a physical. But

goddam it sometimes all of that shit just doesn't help! you think good thoughts,

meditate, excersise, try to help others, but during the day your dropping things

and looking at some pretty decrepit hands. They say, " One thing that separates

man from animal is his opposable thumb " . well guess what boys and girls.

I need help. I don't know what to do and if I don't do something my head is

going to explode. The worst thing about the 12 step program is that before I was

oblivious to the fact that I was hiding from reality. Now I know that if I

started drinking again, that would be the reason and I can't stand the idea of

running away from my problems (although I did alot of it before). Hell, I'm even

considering a psyciatirist.

Just when you think you have this thing under control, it deals another blow.

If you have read through this entire thing, thank you. I DO actually feel a

little bettter (this too shall pass). I'm sorry if I have been a completely

negative bummer but I neede to express my feeling to some people who would

understand. Believe it or not, my brothers are the " buck up and cope " type.

If ANYBODY knows of any groups that get together in the Seattle area who all

have CMT, I would love to hear from you.

Thank you again