Re: Digest Number 161

[Guest guest]

In a message dated 12/6/98 3:33:03 AM Central Standard Time,

eosinophilic gastroenteritis (AT) onelist (DOT) com writes:

<< started him on Prilosec. Has anyone had any experience with

this? Has anyone been able to get it in a liquid? I can only get it in

capsules and that is kind of hard for a 3 year old to take. >>

Dawn

My pharmacy makes up a suspension of the prilosec for me. The doc prefers the

capsules because dosing is more exact. Call your pharmacy.

Jane

[Guest guest]

SPEAKING OF SHOES ,IM 41 NOW AND CANT FIND ANY SHOES THAT DONT KILL MY

FEET,MY LEFT FOOT HAS A RAISED ARSC OF OVER TWO INCHES,MY RIGHT ONE WAS JUST

OPERATED ON FOR THE BIG TOE COMPLETELY CROSSED OVER THE SECOND AND THIRD

TOE,IVE HAD CMT ALL MY LIFE,IF FELL MORE THAN IVE STOOD,PEOPLE HAVE REALLY

BEEN MEAN TO ME AS I GREW UP,AND ITS HAS MADE A VERY ANGRY PERSON OUT OF

ME,BUT I HAVE TO REMIND MYSELF,THEY DONT UNDERSTAND OR CARE,ITS NOT THEM THAT

HURTS SO BAD,MY FIRST TIME ON HERE

ROBERT JOHNSON

[Guest guest]

WHAT EXACTLY IS TES,I NEED TO TELL MY DOCTOR ABOUT IT ,IF I CAN FIND ONE THAT

CARES

[Guest guest]

Marc,

Beautiful. You are a great " teacher " , friend and advocate.

Ruth

>>

>Hey, . I'm Marc and I also am 41. Ya know, I could relate to what you

>wrote. CMT came upon me when I was young (first went to a doctor about it

>at

>age 8, but was clumsy prior to that) and childhood was not sweet.

>

>I received a daily beating on the way home from school or at recess or in a

>hallway. I was called names. I became withdrawn and angry. I acted out on

>the emotions to get the attention I felt I deserved or to punish others,

>but

>it was only myself who was hurt. Now I can see that I beat myself up for

>many years. All those mean kids at school grew up and moved on, but I took

>their place...I terrorized myself. Drugs, alcohol, crazy antics, no food,

>too much food. You name it. If there was a self-destructive aspect to a

>behavior, I was doing it. To myself.

>

>Now, after a few years of therapy and no drinking or drugging, I can see

>that all the anger was an opportunity. I had a choice all along. Sometimes

>I

>couldn't see it; sometimes I was afraid of it. But the opportunity, the

>choice, was still there. When I finally was so alone and beaten, I looked

>at

>this opportunity and this is what I have found:

>

>First, I am not alone. Never. If it seems that I am, it's because I have

>build walls or I'm looking in the wrong places. There are many people who

>are available and always were, but I was too afraid to look. There are some

>great people right here.

>

>Next, no matter how others treat me, I have a choice how I will treat

>myself. If I can learn to love myself - falling, crutches, ugly feet,

>whatever - I have found that then I will gravitate towards people you are

>more apt to show me love and friendship.

>

>Then, I discovered that I am in a unique position to help others who are

>angry or hurt like me. I know how it feels to hurt. And like you say, if

>they don't hurt, chances are they're not gonna care about your pain or

>mine.

>But there are people who are hurting right now and they need to know

>they're

>not alone.

>

>And those " other people, " well, my philosophy is " f " ...., ah, forget 'em! I

>now have better things to do with my time then to think about ignorance.

>Because that's where the hurtful words and actions come from - ignorance

>and

>fear.

>

>And the last thing I wanted to say (Thank God, right?) is that you and I

>are

>in a unique position to educate " the others " about how it feels and that we

>have a lot more to us than a bunch of falling, etc. We are folks who most

>often are thoughtful and creative. We've gotta be to survive!!

>

>Anyway, I just could relate and I thought I should let you know that you're

>not alone and that there is light at the end of the tunnel and all that.

>Welcome. CMTUS is a good place. I first found this a couple months ago and

>have, in that short time, learned more about CMT and what having it really

>means (and that ain't medical findings), than ever before in my life.

>

>I hope something I've written helps.

> Peace,

> Marc

>

>

______________________________________________________

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[Guest guest]

Hey, . I'm Marc and I also am 41. Ya know, I could relate to what you

wrote. CMT came upon me when I was young (first went to a doctor about it at

age 8, but was clumsy prior to that) and childhood was not sweet.

I received a daily beating on the way home from school or at recess or in a

hallway. I was called names. I became withdrawn and angry. I acted out on

the emotions to get the attention I felt I deserved or to punish others, but

it was only myself who was hurt. Now I can see that I beat myself up for

many years. All those mean kids at school grew up and moved on, but I took

their place...I terrorized myself. Drugs, alcohol, crazy antics, no food,

too much food. You name it. If there was a self-destructive aspect to a

behavior, I was doing it. To myself.

Now, after a few years of therapy and no drinking or drugging, I can see

that all the anger was an opportunity. I had a choice all along. Sometimes I

couldn't see it; sometimes I was afraid of it. But the opportunity, the

choice, was still there. When I finally was so alone and beaten, I looked at

this opportunity and this is what I have found:

First, I am not alone. Never. If it seems that I am, it's because I have

build walls or I'm looking in the wrong places. There are many people who

are available and always were, but I was too afraid to look. There are some

great people right here.

Next, no matter how others treat me, I have a choice how I will treat

myself. If I can learn to love myself - falling, crutches, ugly feet,

whatever - I have found that then I will gravitate towards people you are

more apt to show me love and friendship.

Then, I discovered that I am in a unique position to help others who are

angry or hurt like me. I know how it feels to hurt. And like you say, if

they don't hurt, chances are they're not gonna care about your pain or mine.

But there are people who are hurting right now and they need to know they're

not alone.

And those " other people, " well, my philosophy is " f " ...., ah, forget 'em! I

now have better things to do with my time then to think about ignorance.

Because that's where the hurtful words and actions come from - ignorance and

fear.

And the last thing I wanted to say (Thank God, right?) is that you and I are

in a unique position to educate " the others " about how it feels and that we

have a lot more to us than a bunch of falling, etc. We are folks who most

often are thoughtful and creative. We've gotta be to survive!!

Anyway, I just could relate and I thought I should let you know that you're

not alone and that there is light at the end of the tunnel and all that.

Welcome. CMTUS is a good place. I first found this a couple months ago and

have, in that short time, learned more about CMT and what having it really

means (and that ain't medical findings), than ever before in my life.

I hope something I've written helps.

Peace,

Marc

Re: Digest Number 161

> From: ROB1937@...

>

> SPEAKING OF SHOES ,IM 41 NOW AND CANT FIND ANY SHOES THAT DONT KILL MY

> FEET,MY LEFT FOOT HAS A RAISED ARSC OF OVER TWO INCHES,MY RIGHT ONE WAS

JUST

> OPERATED ON FOR THE BIG TOE COMPLETELY CROSSED OVER THE SECOND AND THIRD

> TOE,IVE HAD CMT ALL MY LIFE,IF FELL MORE THAN IVE STOOD,PEOPLE HAVE REALLY

> BEEN MEAN TO ME AS I GREW UP,AND ITS HAS MADE A VERY ANGRY PERSON OUT OF

> ME,BUT I HAVE TO REMIND MYSELF,THEY DONT UNDERSTAND OR CARE,ITS NOT THEM

THAT

> HURTS SO BAD,MY FIRST TIME ON HERE

> ROBERT JOHNSON

>

> ---------------------------

[Guest guest]

I think we all are for each other. That's why we're here with our individual

challenges, to help each other through sharing our experience. Thank you the

kind words. M

Re: Digest Number 161

>

>

> Marc,

>

> Beautiful. You are a great " teacher " , friend and advocate.

> Ruth

>

>

> >>

> >Hey, . I'm Marc and I also am 41. Ya know, I could relate to what

you

> >wrote. CMT came upon me when I was young (first went to a doctor about it

> >at

> >age 8, but was clumsy prior to that) and childhood was not sweet.

> >

> >I received a daily beating on the way home from school or at recess or in

a

> >hallway. I was called names. I became withdrawn and angry. I acted out on

> >the emotions to get the attention I felt I deserved or to punish others,

> >but

> >it was only myself who was hurt. Now I can see that I beat myself up for

> >many years. All those mean kids at school grew up and moved on, but I

took

> >their place...I terrorized myself. Drugs, alcohol, crazy antics, no food,

> >too much food. You name it. If there was a self-destructive aspect to a

> >behavior, I was doing it. To myself.

> >

> >Now, after a few years of therapy and no drinking or drugging, I can see

> >that all the anger was an opportunity. I had a choice all along.

Sometimes

> >I

> >couldn't see it; sometimes I was afraid of it. But the opportunity, the

> >choice, was still there. When I finally was so alone and beaten, I looked

> >at

> >this opportunity and this is what I have found:

> >

> >First, I am not alone. Never. If it seems that I am, it's because I have

> >build walls or I'm looking in the wrong places. There are many people who

> >are available and always were, but I was too afraid to look. There are

some

> >great people right here.

> >

> >Next, no matter how others treat me, I have a choice how I will treat

> >myself. If I can learn to love myself - falling, crutches, ugly feet,

> >whatever - I have found that then I will gravitate towards people you are

> >more apt to show me love and friendship.

> >

> >Then, I discovered that I am in a unique position to help others who are

> >angry or hurt like me. I know how it feels to hurt. And like you say, if

> >they don't hurt, chances are they're not gonna care about your pain or

> >mine.

> >But there are people who are hurting right now and they need to know

> >they're

> >not alone.

> >

> >And those " other people, " well, my philosophy is " f " ...., ah, forget 'em!

I

> >now have better things to do with my time then to think about ignorance.

> >Because that's where the hurtful words and actions come from - ignorance

> >and

> >fear.

> >

> >And the last thing I wanted to say (Thank God, right?) is that you and I

> >are

> >in a unique position to educate " the others " about how it feels and that

we

> >have a lot more to us than a bunch of falling, etc. We are folks who most

> >often are thoughtful and creative. We've gotta be to survive!!

> >

> >Anyway, I just could relate and I thought I should let you know that

you're

> >not alone and that there is light at the end of the tunnel and all that.

> >Welcome. CMTUS is a good place. I first found this a couple months ago

and

> >have, in that short time, learned more about CMT and what having it

really

> >means (and that ain't medical findings), than ever before in my life.

> >

> >I hope something I've written helps.

> > Peace,

> > Marc

> >

> >

> ______________________________________________________

> Get Your Private, Free Email at http://www.hotmail.com

>

>

> ---------------------------