Re: Digest Number 161

[Guest guest]

I am doing parasite cleansing with the Biamonte Center in NYC. They

say that Diatomaceous Earth is a very important part of parasite

cleansing - they have a website, I believe it is

www.health-truth.com. The product I am using is K-Min from

Nutritional Counselors of America, Inc., Tampa, Fl.

[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 I became withdrawn and angry.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. 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

[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. 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

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

From: <ROB1937@...>

<onelist>

Sent: Monday, February 14, 2000 5:13 AM

Subject: 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

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

From: Ruth Warren <warrenre@...>

<onelist>

Sent: Tuesday, February 15, 2000 8:56 PM

Subject: Re: [] Digest Number 161

> From: " Ruth Warren " <warrenre@...>

>

> 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. 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

>

>

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

[Guest guest]

Hello-

I'm a " newbie " to this board and have been lurking and absorbing info for a

couple of weeks now. I have this in digest version and cruise through it each

day.

I do melt & pour glycerine soap and have been at it for a couple years now,

getting better and better as time goes on.. I have just gotten my soap into

my first gift shop and working on a second.. I am constantly inspired by new

scent combos and appearance ideas.

Anyway, I have a question. Is there any way to incorporate goats milk into

melt and pour? I do have access to a good supply of goats milk and will

probably have a pregnant goat this time next year and can supply myself by

then. I was noticing on the Sweetcakes site that there is melt and pour

goatsmilk base available, as well as melt and pour olive oil base. I'd like

to know how much and when to add these ingredients. Does anyone have any

experience with this? Thanks in advance, Donell

[Guest guest]

Hello-

I'm a " newbie " to this board and have been lurking and absorbing info for a

couple of weeks now. I have this in digest version and cruise through it each

day.

I do melt & pour glycerine soap and have been at it for a couple years now,

getting better and better as time goes on.. I have just gotten my soap into

my first gift shop and working on a second.. I am constantly inspired by new

scent combos and appearance ideas.

Anyway, I have a question. Is there any way to incorporate goats milk into

melt and pour? I do have access to a good supply of goats milk and will

probably have a pregnant goat this time next year and can supply myself by

then. I was noticing on the Sweetcakes site that there is melt and pour

goatsmilk base available, as well as melt and pour olive oil base. I'd like

to know how much and when to add these ingredients. Does anyone have any

experience with this? Thanks in advance, Donell

[Guest guest]

, I would love to help with the list. Tell me what to do. Jacque

[Guest guest]

In a message dated 5/9/00 7:22:01 PM Pacific Daylight Time,

egroups writes:

<< Cure an angel? No thanks. >>

Well said, Gail....was just in a " supposing " mood.....know what I mean?

[Guest guest]

In a message dated 5/9/00 7:22:01 PM Pacific Daylight Time,

egroups writes:

<< I've always contended that nuking special ed staff meetings was a good

idea--that way they'd glow int he dark and we'd know who was trying to

sneak around ....

>>

Joan:

ROFLMAO.....

[Guest guest]

,

I have to admit I'm having a hard time with your question, " would

anybody want their child cured? " My husband said to tell you he would

be the first in line. To see Colton get pleasure out of something

besides videos and a sock would be so wonderful.

I would love to read about or hear about what scientists have found.

Could you please elaborate.

Lori

[Guest guest]

I'm writing because my 6 year old has recently been diagnosed with apraxia,

dsarthia( is that just another name for apraxia?) I have only just begun to

learn about this and so I have many questions that I hope someone can help

me with. Is it pretty typical for people with apraxia to have other

problems like fine motor skill problems? Thankyou so much for any help

sincerly son

[Guest guest]

Hi! I am only able to answer generally, being merely a parent.

As far as a " simple " (perhaps too) explanation goes:

Apraxia is a neurologiclally-based motor disorder of speech. The brain has

difficulty sequencing the necessary motor movements of the tongue, lips, jaw,

and palate in the production of speech.

Dysarthria means that muscles in the mouth, tongue, lips, jaw, palate, etc.

are weak and need to be strengthened.

Not to be confused with " Oral Apraxia " which implies difficulty in sequencing

non-speech oral functions like blowing, kissing, etc.

I'm sure there are better definitions out there, and more specifics... As you

can see, there is lots of room for overlap in these different definitions....

It is very typical for kids to have other motor difficulties, some gross,

some fine. Lots of kids have to receive some Occupational or Physical therapy

to help with these issues apart from speech.

The good thing is that there IS help out there, AND THAT NOW YOU HAVE A

STARTING POINT. Good luck- keep us posted.

Cowles Moir

[Guest guest]

-

We have emailed before, I was reading your email, and boy did that sound

familiar except I have " twins " going through the behavior problems at 2years

of age and my husband and I having to walk on eggshells around them without

" setting them off " ; and if we didn't set them off they would set each other

off - oh boy! They are on ProEFA and in special ed pre-k and doing

excellent. I think the ONLY thing that made us survive is that we work

full-time and just getting out of the house awhile made us sane again. But

the boys are starting to talk about 200-250 in vocabulary, their tantrums had

calm down alot, except those few times when I don't understand what they are

saying than they freak-out again, but we are all learning.

Joya111@...

[Guest guest]

In a message dated 7/26/01 3:42:08 PM Eastern Daylight Time,

writes:

<< added Zyme Prime later to make sure all foods where completely

broken down. We have seen great improvement with this. >>

(or anyone),

What do I do if my son is a big eater. In addition to his meals, he receives

food reinforcers at school. He also looks for lots of snacks throughout the

day. His diet is varied and very healthy (GFCF), but I can't pop enzymes

into him every minute.

Any suggestions.

Beth

[Guest guest]

Hi All,

I haven't been able to do much online lately but I've been trying to keep up with everyone. My husband is a mailman in Wayne, PA and there has been much stress for him (he says he's never seen sooooo many of his customers before). Its like they wait for him and question him constantly about mail they receive. One woman even wanted him to open her mail for him. This is really scary. Diane, how are things there? My Mom & dad live in Trenton and she said that they are not even receiving bills on time.

Anyhow, thanks to all of those who have shared their experiences with treatment. It kept me going and tomorrow I begin my last week! Yes, you heard right, 3 more shots to go! I am totally thrilled. It has been one hell of a year and I'm so glad that I found this group. Without you all, I know I would have not done it. I am very grateful to each and every one of you.

Love, Vicky

[Guest guest]

Vicky just because you are almost finished with treatment don't stop staying in touch with us ok?? I am so proud of you for hanging in through al of the tx..I myself couldn't do it..I will try again if they let me..Thanks for letting us know how things are going for you..CONGRADULATIONS!!!!!!!!!

[Guest guest]

Good for you! So there is an end to it?

I think Diane will be awol for a couple of days, she

had to go to Philly for some medical procedures.

It's got to be a tough time to be a postal worker

today. I suppose all those people bugging him don't

help matters. Anyway, glad to hear some good news, I

hope you are through with this for good. -dz-

--- VicLea227@... wrote:

> Hi All,

>

> I haven't been able to do much online lately

> but I've been trying to

> keep up with everyone. My husband is a mailman in

> Wayne, PA and there has

> been much stress for him (he says he's never seen

> sooooo many of his

> customers before). Its like they wait for him and

> question him constantly

> about mail they receive. One woman even wanted him

> to open her mail for him.

> This is really scary. Diane, how are things there?

> My Mom & dad live in

> Trenton and she said that they are not even

> receiving bills on time.

> Anyhow, thanks to all of those who have

> shared their experiences with

> treatment. It kept me going and tomorrow I begin my

> last week! Yes, you

> heard right, 3 more shots to go! I am totally

> thrilled. It has been one

> hell of a year and I'm so glad that I found this

> group. Without you all, I

> know I would have not done it. I am very grateful

> to each and every one of

> you.

>

> Love, Vicky

>

__________________________________________________

[Guest guest]

Congratulations Vicky

It's good to hear that you are about to complete your treatment. Just because your almost finished don't be a stranger from the group.

Re: [ ] Digest Number 161

Hi All, I haven't been able to do much online lately but I've been trying to keep up with everyone. My husband is a mailman in Wayne, PA and there has been much stress for him (he says he's never seen sooooo many of his customers before). Its like they wait for him and question him constantly about mail they receive. One woman even wanted him to open her mail for him. This is really scary. Diane, how are things there? My Mom & dad live in Trenton and she said that they are not even receiving bills on time. Anyhow, thanks to all of those who have shared their experiences with treatment. It kept me going and tomorrow I begin my last week! Yes, you heard right, 3 more shots to go! I am totally thrilled. It has been one hell of a year and I'm so glad that I found this group. Without you all, I know I would have not done it. I am very grateful to each and every one of you. Love, Vicky

[Guest guest]

, so sorry for Francesca.I think that your instinct is to insist that she should be properly examined. Whenever I have suppressed such instincts ,Ive been proved right., inthe end, and wished I hadnt.Of course you might be one of those screamers Ive seen sometimes at ent,who lose all credibility ,but I doubt it.You tell them.

[Guest guest]

thankyou for your kind words....and hand on heart, after numerous babies

etc...i can honestly say i'm not a screamer..lol

having said that...i am happy to stand my ground, am defensive of my rights

and those of my children....and can hold my own re: c-toma.

a big thankyou to everyone who takes the time to send a posting, or write a

few words...to talk of their own experiences, whether in negative or postive

frame...it's because of all of you that i can now discuss c-toma on a level

beyond my GP, and on somewhat more equal terms with frankie's consultant.

so whether it's good or bad news...i at least understand what's going

on...and in turn so does francesca. it really is worth writing...even if

it's only a few words here and there, there arent any right answers with

c-toma, so everything that everyone has to say is valuable.

thanks all again.

will let you know how we get on on wednesday....until then...

good luck to those facing surgery or appointments in the near future

chin up to those who havent had the news they'd hoped for or deserved, my

thoughts and prayers are with you

and

congratulations to all who have had good results recently.

julie and francesca

x

[Guest guest]

What I was trying to say to which you took offense is that none of the nurses in

this research unit are newly-minted nursing school grads. All nurses who have an

RN have a certain level of competence. However, nothing, and I mean nothing, can

substitute for what an RN has learned thru experience and from other more

experienced nurses. It is the stuff not taught in nursing school that makes the

difference in critical situations.

-

PS: If you'd rather not know about my experiences at Scripps, just say so

because I certainly don't have to do this.

>>

> Message: 2

> Date: Sat, 5 Oct 2002 15:01:59 -0400

> From: " Maureen " <cmt0917@...>

> Subject: Re: Scripps - Day One

>

> Don't mean to be a pest as I am new, but the reference to no 21 year olds need

not apply what very discriminating. I am not young as I am in my mid 30's but

that reference sickened me. I have almost died a couple of times and thanks to a

breathing machine and nurses, doctors, emt's, young and old I have lived. I

don't care if the nurses are young or old as only they don't douse themselves

with cologne or perfume which kills my breathing and they can do their job.

>

>

[Guest guest]

Don't stop the updates because of one person. I am very interested in hearing about your experience as I am going to Scripps 10/24.

Thanks!

Rob

Re: Scripps - Day One> > Don't mean to be a pest as I am new, but the reference to no 21 year olds need not apply what very discriminating. I am not young as I am in my mid 30's but that reference sickened me. I have almost died a couple of times and thanks to a breathing machine and nurses, doctors, emt's, young and old I have lived. I don't care if the nurses are young or old as only they don't douse themselves with cologne or perfume which kills my breathing and they can do their job.> >

[Guest guest]

Hi:

When I went for rehab for my bilateral knee replacements, I wore pj shorts and tee shirts. Sweats might not be good for stretching and bending.

Carole - AKA Thorn Willowweb, AKA Daisy Proudfoot of Standelf, AKA Idril Faelivrin

God grant me the Senility to forget the people I never liked anyway, the good fortune to run into the ones I do, and the eyesight to tell the difference.

Let those that love us, love us, and those that don't love us, may God turn their hearts; and if He doesn't turn their hearts, may He turn their ankles, so that we may know them by their limping. ·.,¸¸,.·´¯`·.,¸¸,.·´¯`·.»§«©©©»§«·.,¸¸,.·´¯`·.,¸¸,.·´¯`· I think I lost my mind, so watch where you step! ·.,¸¸,.·´¯`·.,¸¸,.·´¯`·.»§«©©©»§«·.,¸¸,.·´¯`·.,¸¸,.·´¯`·

---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.505 / Virus Database: 302 - Release Date: 7/30/2003