Book

[Guest guest]

Hello all

For my sins I write stories, mainly short stories and occasionally an

article but I've come up with an idea and I need your help.

What I want to do is write a novel about a family who have CMT running

through it. A very brief synopsis is as follows.

The story starts way back in n times in London, where a child is

born with deformed feet. The 'midwife' tells the new mother that the child has

deformed feet and probably has something else wrong with it as well. The child

grows up with very obvious problems etc, eventually marries has children of her

own, none of which appear to have her own problems. Her children grow up and

marry, her second son, also her second child marries, has a child dies, her

daughter in law dies and her grandson is brought up in an orphanage.

She dies and her dying wish is to see her grandson again. Unfortunately she

has no idea where he is and he has no knowledge of her. Round the time she's

dying, history is repeating itself in the fact that her grandson has a daughter,

his first child and she too is born with deformed feet. The story goes on about

how her grandchild grows up, marries, has children and eventually become

disabled because of neglect of her condition but her disablitity drives her on

to discover what exactly is wrong. This discovery leads the family into the next

generation and the effects that CMT has on that. Where it is going from there I

don't know. That's if it goes along these lines, hardly anything else I write

when I prepare a synopsis does.

However, I don't want it to be a sad story or just a history of the family.

I want to show people the laughter as well as the tears. We've all laughed and

cried at our own problems and I would like you guys to share your stories

anonymously if you wish with me. If you're a silver haired teenager tell me what

it was like when you were a child. What did they say was wrong with you? How

were you treated? Did children make fun of you. They did with me. One boy when I

was about five laughed at me because I wore big orthopedic boots, so I kicked

hell out of him. The headteacher called me into the office and said " , I

know it was wrong of to make fun of you but really dear, you shouldn't

kick him. " I'd left him bleeding and crying, I can still hear her voice today.

Please tell me what you want to tell me. This story is fiction based on fact

but as I said I really would appreciate your help.

To save clogging up the email group you can email me direct on

hordermason@... and I'll keep you informed on how things are going.

Maybe this is one way that we can all bring CMT into the public view and save

ourselves a hell of lot of question answering.

Thanks for listening and I'll look forward to hearing from you. Don't worry

about getting it down all in one go, send me a few lines every now and again.

That's the advantage of doing everything on the computer you can add bits here

and there without causing problems.

Thanks again and much love to you all

Sue XXXX

[Guest guest]

i just borrowed coping with prednisone from my local library. you

may wanna look there. also, i found it on half.com much cheaper ($4)

than it would be at the store!

glad you are doing so well. it feels great to be able to join the

land of the living! i used to love softball, and congrats on your

run! i'm finally able to go mountain biking. i used to be falling

over in the trails, and now, we're doing 13 miles and my only real

complaint is my legs are tired!

heather

> Ash & everyone,

>

> We only had a handful of people for the chat. It went well, but

the

> Genentech folks sent Doug a nice email the day before explaining

> that they wouldn't be able to participate. (I suspect due to

> potential liability reasons, but they didn't specifically say

> that.) So we didn't have any experts, just us users.

>

> " Coping with Prednisone " - My copy is less than a year old and the

> ISBN is 0-312-19570-2. Published by St. 's . The

> authors are a pair of sisters - one a doctor who frequently

> prescribed pred for her patients but didn't really understand its

> power until her sister was prescribed high doses of pred over time

> for a chronic illness (not asthma).

>

> My understanding is that there is a greater chance of a child

> becoming asthmatic if he has one or more asthmatic parents, but I

> don't know what the percentage is. I don't know how allergy is

> involved in that.

>

> I'm the only real allergic asthmatic in my family. That said, all

> the women on my mother's side have/had arthritis, which is another

> inflammatory disease. I suspect that somehow my Dad's DNA plus my

> Mom's put me at risk for allergic inflammatory response somehow

and

> I wound up with thirty years of misery prior to Xolair. Oh, and

> that doesn't let me off arthritis - I already have mild symptoms

in

> my right hand which are worse now that I don't take pred all the

> time. Go figure.

>

> Woke up stuffy this morning at 5:30am. Xolair day tomorrow, thank

> goodness.

>

> Have a good weekend, everyone.

>

> Addy

[Guest guest]

Excerpts I've seen from the book leave me with a fairly poor impression, but I haven't read it myself.

H.

In a message dated 5/13/09 4:58:20 PM, seamaiden399@... writes:

not all of 's data is accurate, so I wouldn't take her book as the be all and end all of Celiac information. I am especially concerned by reports that she cheats on the diet to avoid being a "party pooper" and that she refers to the blood test as the gold standard test, when most reputable researchers still use the biopsy as the gold standard for Celiac diagnosis.

**************Dell Mini Netbooks: Great deals starting at $299 after instant savings! (http://pr.atwola.com/promoclk/100126575x1221972443x1201442012/aol?redir=http:%2F%2Fad.doubleclick.net%2Fclk%3B214819441%3B36680237%3Bi)

[Guest guest]

Yeah, I'm starting to think the same thing about beth's book.On one hand I was glad to see she "cheated" and early on bought regular bread products from time-to-time, too, because it's SO hard to adjust and give up everything that you loved to eat, and lived on, for so long.Food is SUCH a social activity, that to not eat what "everyone else" is eating or to turn food away really freaks people out. You're then cast as "anti-social" or "you don't like me". It's so stupid and *base* (cave man thinking), but it also the way of it. So cheating sort of helped keep the status quo at times and everyone's feathers smoothed. Basically, it was nice to see I was not alone and that some else struggled with the same problem.But, on the other hand, yeah...I questioned her motives and

wondered why she included that information in her book. She's a celebrity. Everyone will know what she's doing now.AND, people are going to read what she wrote as gosple.This is why I'm double checking her recommendations as some of her info didn't seem correct. However, a lot has been learned - and changed - since the last time I've done heavy research on CD, so it's hard to know who's right and what's wrong. Sounds like most of what I already knew (and that I'm learning in this group) is correct. Louise Audellart + designlouiseaudell.com(510) 531-4607From: "flatcat9@..." <flatcat9@...> Sent: Wednesday, May 13, 2009 5:26:15 PMSubject: Re: [ ] Re: book

Excerpts I've seen from the book leave me with a fairly poor impression, but I haven't read it myself.

H.

In a message dated 5/13/09 4:58:20 PM, seamaiden399 writes:

not all of 's data is accurate, so I wouldn't take her book as the be all and end all of Celiac information. I am especially concerned by reports that she cheats on the diet to avoid being a "party pooper" and that she refers to the blood test as the gold standard test, when most reputable researchers still use the biopsy as the gold standard for Celiac diagnosis.

************ **Dell Mini Netbooks: Great deals starting at $299 after instant savings! (http://pr.atwola. com/promoclk/ 100126575x122197 2443x1201442012/ aol?redir= http:%2F% 2Fad.doubleclick .net%2Fclk% 3B214819441% 3B36680237% 3Bi)

[Guest guest]

Just because she’s “famous” doesn’t mean she’s right.

From:

[mailto: ] On

Behalf Of Louise Audell

Sent: Thursday, May 14, 2009 8:05 AM

Subject: Re: [ ] Re: book

Yeah, I'm starting to think the same thing about beth's

book.

On one hand I was glad to see she " cheated " and early on bought

regular bread products from time-to-time, too, because it's SO hard to adjust

and give up everything that you loved to eat, and lived on, for so long.

Food is SUCH a social activity, that to not eat what " everyone else "

is eating or to turn food away really freaks people out. You're then cast as

" anti-social " or " you don't like me " . It's so stupid and

*base* (cave man thinking), but it also the way of it. So cheating sort of

helped keep the status quo at times and everyone's feathers smoothed.

Basically, it was nice to see I was not alone and that some else struggled with

the same problem.

But, on the other hand, yeah...I questioned her motives and wondered why she

included that information in her book. She's a celebrity. Everyone will know

what she's doing now.

AND, people are going to read what she wrote as gosple.

This is why I'm double checking her recommendations as some of her info didn't

seem correct. However, a lot has been learned - and changed - since the last

time I've done heavy research on CD, so it's hard to know who's right and

what's wrong. Sounds like most of what I already knew (and that I'm learning in

this group) is correct.

Louise Audell

art + design

louiseaudell.com

(510) 531-4607

..

[Guest guest]

Yes, I know, but I would have expected a little bit more from someone like her *because* she's famous and *because* what she says will be deemed accurate. It seems she should have done more research before publishing her book. Things like this only create more confusion for those restaurants, grocers, etc. who are trying to cater to our needs...and more confusion for those who are newly diagnosed. And...if you can't rely on these types of books to be more accurate (because most doctors aren't), who can you rely on when first starting out? Louise Audellart + designlouiseaudell.com(510) 531-4607From: Wallace <AWallace@...> Sent: Thursday, May 14, 2009 10:28:46 AMSubject: RE: [ ] Re: book

Just because she’s “famous†doesn’t mean she’s right.

From:

[mailto:celiacbayar eagroups (DOT) com] On

Behalf Of Louise Audell

Sent: Thursday, May 14, 2009 8:05 AM

Subject: Re: [ ] Re: book

Yeah, I'm starting to think the same thing about beth's

book.

On one hand I was glad to see she "cheated" and early on bought

regular bread products from time-to-time, too, because it's SO hard to adjust

and give up everything that you loved to eat, and lived on, for so long.

Food is SUCH a social activity, that to not eat what "everyone else"

is eating or to turn food away really freaks people out. You're then cast as

"anti-social" or "you don't like me". It's so stupid and

*base* (cave man thinking), but it also the way of it. So cheating sort of

helped keep the status quo at times and everyone's feathers smoothed.

Basically, it was nice to see I was not alone and that some else struggled with

the same problem.

But, on the other hand, yeah...I questioned her motives and wondered why she

included that information in her book. She's a celebrity. Everyone will know

what she's doing now.

AND, people are going to read what she wrote as gosple.

This is why I'm double checking her recommendations as some of her info didn't

seem correct. However, a lot has been learned - and changed - since the last

time I've done heavy research on CD, so it's hard to know who's right and

what's wrong. Sounds like most of what I already knew (and that I'm learning in

this group) is correct.

Louise Audell

art + design

louiseaudell. com

(510) 531-4607

..

[Guest guest]

Thanks Louise and for the details on 's book, nice to hear your side of it so I don't have to go buy it.  However I am disappointed to hear this cause is always so righteous with everyone, that I am surprised that's she's not super detail oriented to help all of us with Celiac awareness. Btw, I follow glutenfreegirl on twitter, she's coming out with a cookbook soon. cheers, swimmergirl1202 on twitterFrom: Louise Audell <louise_gd@...> Sent: Friday, May 15, 2009 6:44:21 AMSubject: Re: [ ] Re: book

Yes, I know, but I would have expected a little bit more from someone like her *because* she's famous and *because* what she says will be deemed accurate. It seems she should have done more research before publishing her book. Things like this only create more confusion for those restaurants, grocers, etc. who are trying to cater to our needs...and more confusion for those who are newly diagnosed. And...if you can't rely on these types of books to be more accurate (because most doctors aren't), who can you rely on when first starting out? Louise Audellart + designlouiseaudell.com(510) 531-4607From: Wallace <AWallace@...> Sent: Thursday, May 14, 2009 10:28:46 AMSubject: RE: [ ] Re: book

Just because she’s “famous†doesn’t mean she’s right.  

From:

[mailto:celiacbayar eagroups (DOT) com] On

Behalf Of Louise Audell

Sent: Thursday, May 14, 2009 8:05 AM

Subject: Re: [ ] Re: book

 

Yeah, I'm starting to think the same thing about beth's

book.

On one hand I was glad to see she "cheated" and early on bought

regular bread products from time-to-time, too, because it's SO hard to adjust

and give up everything that you loved to eat, and lived on, for so long.

Food is SUCH a social activity, that to not eat what "everyone else"

is eating or to turn food away really freaks people out. You're then cast as

"anti-social" or "you don't like me". It's so stupid and

*base* (cave man thinking), but it also the way of it. So cheating sort of

helped keep the status quo at times and everyone's feathers smoothed.

Basically, it was nice to see I was not alone and that some else struggled with

the same problem.

But, on the other hand, yeah...I questioned her motives and wondered why she

included that information in her book. She's a celebrity. Everyone will know

what she's doing now.

AND, people are going to read what she wrote as gosple.

This is why I'm double checking her recommendations as some of her info didn't

seem correct. However, a lot has been learned - and changed - since the last

time I've done heavy research on CD, so it's hard to know who's right and

what's wrong. Sounds like most of what I already knew (and that I'm learning in

this group) is correct.

 

Louise Audell

art + design

louiseaudell. com

(510) 531-4607

 

..