sick, well, diseased, challenged

[Guest guest]

Dear all,

With having CMT, how do you see yourself?

1) Do you see yourself as sick?

2) Or diseased?

3) Or well and just challenged

Just wondering as this morning the Pharmacist no less (!) commented on

how good I look for being so sick! LOL I was just picking up my Elavil

refill...I left some CMT Fact Sheets with her after explaining CMT a

bit. She was blushing and very apologetic....guess she felt stupid?

~ Gretchen

[Guest guest]

I've never considered myself sick - just challenged by a disability.

I don't use the word 'disease', rather 'disorder' or 'condition',

because I'm afraid new acquaintances will think it's contagious or

that it's fatal. You all know how that goes.

I've always considered the CMT separate from my general health.

Like, I rarely get the flu, get one cold a year, haven't had any

broken bones or internal organ problems, hardly ever missed a day of

work, and am generally a good-humored person. However, walking slow

and using crutches undoubtedly makes people think I'm 'broken down',

kindof like an old person.

I had a hearing test a couple of years ago, and the dr. said I should

be glad to know that my ears were one part of my body that wasn't

falling apart. I didn't know if I should laugh or should have given

him an earful (he was VERY overweight), but I held my tongue at the

time.

Don't call me sick!

Melody

> Dear all,

>

> With having CMT, how do you see yourself?

>

> 1) Do you see yourself as sick?

> 2) Or diseased?

> 3) Or well and just challenged

>

> Just wondering as this morning the Pharmacist no less (!) commented

on

> how good I look for being so sick! LOL I was just picking up my

Elavil

> refill...I left some CMT Fact Sheets with her after explaining CMT a

> bit. She was blushing and very apologetic....guess she felt stupid?

>

> ~ Gretchen

[Guest guest]

Gretchen,

Be a bit easy on your pharmacist. CMT is not that " well-known " however, I

feel my pharmacist at times knows SO much more than my old neuro.

[Guest guest]

I see myself as normal, especially when I consider the whole realm of things.

Yes, CMT is an inconvenience for me, but it could be far worse! I have

NEVER considered myself handicapped.

Karon

[Guest guest]

Ditto, !

[Guest guest]

> Ditto, !

>

>

>

[Guest guest]

Well dear folks!

I stopped by my doctors to get a refill on the valium.

He took one look at my new shoes, asked how often I

have fallen or almost fell recently. I told him. He

wrote a prescption for a tri-pod walker, with verbal

intrusctions to get it immediatly!.. and gave me a

presciption for Neurontin... he told me it is usually

for epelipsy, but is very good for our type of spasms.

i laughed at him and asked if he thought I wasn't

spastic enoug already.. I got a good Healing Hug and

God Bless from him and a new prescription. I took it

last night and passed smooth out, didn't hear my honey

come home from work. I don't remember what I dreamt

about but I am sure I will soon.

My old dreams were of riding a bicylcle and skating

which I never could do.

Love,

Susie

--- kedleson@... wrote:

> I see myself as normal, especially when I consider

> the whole realm of things.

> Yes, CMT is an inconvenience for me, but it could

> be far worse! I have

> NEVER considered myself handicapped.

>

> Karon

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

I forgot to add, since I am new at this. When asked

by friends and clients I tell them I have an

Heriditary DISORDER or a Genetic Disorder. They say

they hope I get better, I thank them for their

kindness and then tell them where to go look up CMT if

they are interested. Freiends always do and later ask

if there is anything they can help me with. I tell

them I don't need much help now but I might later. My

girl friend went to my house while I was at work,(she

has a key) and cleaned for me. God Bless Friends!!!

--- kedleson@... wrote:

> I see myself as normal, especially when I consider

> the whole realm of things.

> Yes, CMT is an inconvenience for me, but it could

> be far worse! I have

> NEVER considered myself handicapped.

>

> Karon

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Sue,

Thank you.....I have not said anything, more for fear that people would

yell at me for

feeling 'diseased'....i honestly consider myself diseased with CMT and

sick. I have to wear AFO's, i miss lots of school, and have to try and

take medication...and fatigued...I am not normal...and challenged

too...i'm scared of stairs, ice, and waking up with numb legs.....

I was afraid i was the only who feels this way...However, I don't think

that there's anything wrong with the fact that I have CMT...I mean, I

hate CMT....i do..but I don't see why I should not be diseased...I try to

do as much as I can but it comes down to the fact that I can't do a lot

of things BECAUSE of the CMT...That's just how i feel.....

Love y'all,

On Mon, 21 Jan 2002 00:07:11 -0000 " Sue Horder-Mason "

<sue@...> writes:

> Now I'm going to be a real wet blanket after reading the posts on

> this question Gretchen has posted and answer this question honestly

> but the answers I give I've felt for a long time.

> 1) Do you see yourself as sick?

> I use the word ill and have done since things started going

> seriously wrong. I do this for both me and others who can relate to

> both times when I could walk and was 'normal' to now when I can't

> walk and things aren't normal. For me it is a kind of cut of point

> from one lifestyle to another.

> 2) Or diseased?

> Yes I see myself as diseased. I have very poor blood circulation

> and have the blotchy skin on my feet, legs, hands and arms. (This

> also appears to be a sign of CMT) so when I look at my blotchy,

> funny coloured skin yes I know I'm diseased, even with a sun tan you

> can see the lines beneath it. Winter is great to some degree because

> I wear trousers which hide my funny deformed legs and feet and long

> sleeves hide my funny coloured arms but when I look at my hands -

> it's a constant reminder.

> 3) challenged

> It's not just a case of whether it's convenient or not but how much

> is lifting my coffee mug going to hurt. I need to go to the loo but

> I've got to go upstairs what else do I need to do while I'm up there

> or is there something I need to bring down with me. But I can't

> leave going to the loo too long because of accidents yes - this has

> happened to me and I found it the most embarrasing point with my CMT

> so I feel I need to go more often than most just avoid such

> situations. I literally live on a sofa in my sitting room with a lap

> top computer which for some might be fine - for me I hate it but I

> don't have a choice. Any movement I make has to be calculated and

> used to it's full potential that way I try and cut down on pain.

> Anything just to cut down on moving but even sitting still or

> resting is painful. If that ain't challenging that you tell me what

> is.

> These are my answers to the question Gretchen asked and I've

> answered them honestly but on a physical level. Yes my situation

> depresses me. I was always a busy person who longed for more time at

> home - now I have this enforced situation and of living in a world

> that in my wildest dreams would qualify as a horrific nightmare I'm

> doing my best to cope with it.

> Just because my body doesn't work my mind does and thankfully

> (although) painful my fingers do I'd like to think that I'm making a

> new life for myself and God Bless the internet for giving me the

> chance.

> 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: Gretchen Glick

> ers at groups

> Sent: Thursday, January 17, 2002 7:23 PM

> Subject: [] sick, well, diseased, challenged

>

>

> Dear all,

>

> With having CMT, how do you see yourself?

>

> 3) Or well and just challenged

>

> Just wondering as this morning the Pharmacist no less (!)

> commented on

> how good I look for being so sick! LOL I was just picking up my

> Elavil

> refill...I left some CMT Fact Sheets with her after explaining CMT

> a

> bit. She was blushing and very apologetic....guess she felt

> stupid?

>

> ~ Gretchen

>

>