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In a message dated 12/11/2001 9:58:55 AM Central Standard Time,

jochs83@... writes:

> it is like mourning a death, only

> it isn't a person, it is a part of yourself.

>

> Juli

>

You are so right, Juli. I have been treated for depression for years, long

before I was ever diagnosed. A big factor to that depression is the losses

you're talking about. I have a good therapist now, and with his help I have

learned to acknowledge and grieve for those losses, then move on. C

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The most awful aspect of CMT is the life losses. Let me explain, in

my childhood, teens and early adult years I rode horses competively,

even dabbled on being a jockey. But for some " unknown " reason, I

kept noticing that I was having greater and greater difficulty

holding on to the horse, so I quit. I attended college, I graduated

with low grades, mostly because I couldn't hold onto a pen and write

notes, some of the teachers were sympathetic, but most were not. All

I'm saying is that it is difficult to find things you like only to

have to give them up at some point, it is like mourning a death, only

it isn't a person, it is a part of yourself.

Juli

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I agree Juli. I used to be a semi pro French Horn player, I also played all

brass instruments various woodwind and strings also the guitar and piano. Now I

can't hold the horn, my wrists won't turn enough even if it didn't hurt to play

the guitar and although I still have a go on the piano it hurts like hell.

And we should grieve for that which we've lost that was so important to us but

most people just wouldn't understand that.

Big hug

Love

Sue

The important thing is never to stop questioning.

Website www.horder-mason.freeserve.co.uk

Freelance Writer and CMTer

" I Thank God for my handicaps, for through them, I have found myself, my work,

and my God. " - Helen Keller

----- Original Message -----

From: jochs83

Sent: Tuesday, December 11, 2001 3:57 PM

Subject: [] Re: Symptoms

The most awful aspect of CMT is the life losses. Let me explain, in

my childhood, teens and early adult years I rode horses competively,

even dabbled on being a jockey. But for some " unknown " reason, I

kept noticing that I was having greater and greater difficulty

holding on to the horse, so I quit. I attended college, I graduated

with low grades, mostly because I couldn't hold onto a pen and write

notes, some of the teachers were sympathetic, but most were not. All

I'm saying is that it is difficult to find things you like only to

have to give them up at some point, it is like mourning a death, only

it isn't a person, it is a part of yourself.

Juli

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I wholeheartedly agree on the losses. I was diagnosed at age 4 and

started wearing AFOs at age 5. I had multiple surgeries growing up such

as tendon transfers, bone grafts, ankle fushions, but was still able to

run, jump, hike, play with other kids, swim, ride my bike, and do all

sorts of things. As I got older and grew bigger it was almost like my

muscles couldn't keep up with me and I got weaker and weaker.

I think the worst thing I did for myself was to buy a moped at age 15.

Prior to that summer I rode my bike everywhere. Once I got the moped I

stopped getting the exercise biking gave me and I started to get weaker

and weaker.

Similar thing happened with my job. I worked for 2 years as a retail

manager in Atlanta, GA and was on my feet for 8 hours a day. This was

pure hell at first and I thought I'd never make it and never be able to

handle it. Gradually I grew stronger and stronger until I had very

little balance problems and was able to unpack stock and merchandise the

store, etc...

After my divorce I moved back to Michigan 2 years ago and got a job

where I sit at a desk for 8 hours a day. I am MUCh weaker now even

though I do stretching exercises at home. I wish I had never given up

the strength that I had and I can tell it has a direct correlation to

ceasing the physical exercise I was doing.

What I really wish though, is to be able to run again...to be able to

wear shorts in the summer or skirts without people staring at me...to be

able to feel comfortable at the beach or at pool parties....to wear

sandals.....to be able to easily climb stairs.....

It's torture to miss these things and sometimes I get so down on myself

and so depressed, but at least I can sit here and thank God that I was

able to experience those things even for the short amount of time that I

did.

Stay strong! :-)

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,

I am one of those people with CMT who finds that excercise makes me

stronger. I have heard many people tell me that excercise will make my CMT

worse but I find just the opposite to be true for me. Start a basic

excercise program and build your self back up, you can do it. It will take

time and effort but the end results are worth it. Good luck.

Regards,

BC

----- Original Message -----

From: <sdgiftos@...>

< >

Sent: Tuesday, December 11, 2001 5:01 PM

Subject: Re: [] Re: Symptoms

>

> I wholeheartedly agree on the losses. I was diagnosed at age 4 and

> started wearing AFOs at age 5. I had multiple surgeries growing up such

> as tendon transfers, bone grafts, ankle fushions, but was still able to

> run, jump, hike, play with other kids, swim, ride my bike, and do all

> sorts of things. As I got older and grew bigger it was almost like my

> muscles couldn't keep up with me and I got weaker and weaker.

> I think the worst thing I did for myself was to buy a moped at age 15.

> Prior to that summer I rode my bike everywhere. Once I got the moped I

> stopped getting the exercise biking gave me and I started to get weaker

> and weaker.

> Similar thing happened with my job. I worked for 2 years as a retail

> manager in Atlanta, GA and was on my feet for 8 hours a day. This was

> pure hell at first and I thought I'd never make it and never be able to

> handle it. Gradually I grew stronger and stronger until I had very

> little balance problems and was able to unpack stock and merchandise the

> store, etc...

> After my divorce I moved back to Michigan 2 years ago and got a job

> where I sit at a desk for 8 hours a day. I am MUCh weaker now even

> though I do stretching exercises at home. I wish I had never given up

> the strength that I had and I can tell it has a direct correlation to

> ceasing the physical exercise I was doing.

> What I really wish though, is to be able to run again...to be able to

> wear shorts in the summer or skirts without people staring at me...to be

> able to feel comfortable at the beach or at pool parties....to wear

> sandals.....to be able to easily climb stairs.....

> It's torture to miss these things and sometimes I get so down on myself

> and so depressed, but at least I can sit here and thank God that I was

> able to experience those things even for the short amount of time that I

> did.

> Stay strong! :-)

>

>

>

>

>

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  • 2 years later...
Guest guest

I'm hoping someone out there can help me. In September, I started a

job in a high school as a teacher's aid. In October I came down with

a bad case of hives. I still have the hives. I also have unexplained

fatigue, headaches, joint pain, problems concentrating, swollen hands

and feet, multiple sinus infections, nose congestion, red burning

itchy eyes. There is visible mold on the ceiling tiles of my

classroom and visible water damage in the gym. Are any of these

symptoms shared by anyone out there? I have another appointment with

the allergist today. I've been on medication since October for the

hives, but my symptoms are just getting worse.

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