RE: weight

[Guest guest]

In a message dated 5/26/00 9:09:45 PM Eastern Daylight Time, liliwigg@...

writes:

<< forgetting' sometimes

that I have it>>

I'm glad to hear that. Of course I have had it for 69 yrs at various

degrees and I just never thought of it cause no one around me had it (I was

adopted) and like you I was always busy. I didn't know it was cmt till I was

in my fifties. I was lucky, because from what I gather mine is vary minimal

(cmt1a). Oh I shake rattle & roll and the hands no longer hold things as I

would like them to. I can remember coming home from work at 1;30am and walk

thru the door and sit down and stay that way for sometime because my feet

hurt so I could have almost cried, in fact I thing I did a couple nights.

Sometime I fell asleep in the chair and would spend the rest of the night

there. I had to wear company safety shoes at the time for eight hours a night

and then go back and do it over again each night. Man! did that smart :-)

One time in my life (around 22yrs old) they gave me only 6 mths to live. I

was working for a grocery chain and one day while working I got this terrific

headache in my right eye so bad I had to leave work. I would be taking a bus

home. When the bus pulled up I put my hand in my pocket to get some change

and I could not feel anything. so I made what I thought a fist would be and

pulled my hand out, there was some change in it but I could not feel it, I

could see it. I could not feel either hand. I went to take a step up on to

the bus and I had to look down to see if my foot was on the step, I could not

feel my feet either. I manage to get home and went right to bed. My mother

called the doctor and he would not even let me out of bed to go to the

bathroom. In three weeks he sent me to a neurologist. The neurologist told

my parents what I had (the name was about six miles long) and that I only had

six months to live. So for six months and a couple more all I did was sleep,

eat breakfast, sleep, eat lunch, sleep, eat dinner and start the cycle all

over again. My Mother called the neurologist and he could not believe I was

still alive. I saw him and that's when he told me what he had told my Mother,

that I would not live six months. She never told me. I had lost a great

amount of weight during that work period, burning the candle at both ends.

During my time in bed I had regained my weight and the Dr. told me never to

go below 182lbs. He gave me a multivitamin and I think it was heavy on the

B12, or B6 maybe (its been so long) and I was to take it the rest of my life.

Some where along the line I lost the prescription and by the time I decided I

should take it again, the drug store that had the records had gone out of

business. I never did get back to the vitamins. By the way the Neurologist

never did not mention anything about cmt. I don't thing the man knew.

So make sure you get that rest and eat all your vegetables :-)

[Guest guest]

weight

>Hello ,

>

>About the weight issue, there is a spinoff group one of our CMTUS

>members started 6 months ago for weight management here it is for your

>information http://egroups.com/group/CMTweightmanagement I also have

>linked

>it under our 'links' sectioon.

>

>I too have had CMT since childhood, am single, and have only 1 brother.

>My parents are both deceased. I have never let CMT stop me from doing

>anything I want to, even if I have to make 'adjustments'. I grew up and

>currently live in Southern California, having lived in just about all

>the

>Western States for awhile. As for what Lamar posted about

>his social life, I have discovered that my CMT and a good, positive

>attitude have increased my social life megafold. I am also active in

>church,

>civic, community and political affairs doing volunteer and charitable

>work

>and meeting new people constantly. Being single gives me the time to

>devote

>to this work and then I work (for a living) at home as a writer. My only

>problem is getting enough and adequate rest and 'forgetting' sometimes

>that I have

>CMT. I do not think about what I can't do, but about what I CAN do.

>

>Several years ago I made some changes in my diet. Not only did I loose

>weight, but I am healthier at checkups and have incorporated these

>changes into my life. If you would like a copy of the food plan/diet I

>used (given by my Dr) just email me privately, since I can't attach it

>here.

>

>Gretchen

>

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

>Was the salesman clueless? Productopia has the answers.

>http://click.egroups.com/1/4633/10/_/616793/_/959389742/

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

>

>

[Guest guest]

yes please send me the pamplet .....my e mail is dmillerman@...

Thank you so much for the welcome and the info....you have a very positive

outlook and that is great...maybe some will rub off ...lmao

Just david

weight

> Hello ,

>

> About the weight issue, there is a spinoff group one of our CMTUS

> members started 6 months ago for weight management here it is for your

> information http://egroups.com/group/CMTweightmanagement I also have

> linked

> it under our 'links' sectioon.

>

> I too have had CMT since childhood, am single, and have only 1 brother.

> My parents are both deceased. I have never let CMT stop me from doing

> anything I want to, even if I have to make 'adjustments'. I grew up and

> currently live in Southern California, having lived in just about all

> the

> Western States for awhile. As for what Lamar posted about

> his social life, I have discovered that my CMT and a good, positive

> attitude have increased my social life megafold. I am also active in

> church,

> civic, community and political affairs doing volunteer and charitable

> work

> and meeting new people constantly. Being single gives me the time to

> devote

> to this work and then I work (for a living) at home as a writer. My only

> problem is getting enough and adequate rest and 'forgetting' sometimes

> that I have

> CMT. I do not think about what I can't do, but about what I CAN do.

>

> Several years ago I made some changes in my diet. Not only did I loose

> weight, but I am healthier at checkups and have incorporated these

> changes into my life. If you would like a copy of the food plan/diet I

> used (given by my Dr) just email me privately, since I can't attach it

> here.

>

> Gretchen

>

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

> Was the salesman clueless? Productopia has the answers.

> http://click.egroups.com/1/4633/10/_/616793/_/959389742/

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

>

>

[Guest guest]

on 5/5/02 12:12 AM, bigwoodward at jason.woodward@... wrote:

> I'm curious if anyone has any insight on rosacea as related to

> weight.

>

> Regards.

What do you mean exactly? Can you be a little more specific? I would be

interested in discussing this topic...

[Guest guest]

on 5/5/02 12:12 AM, bigwoodward at jason.woodward@... wrote:

> I'm curious if anyone has any insight on rosacea as related to

> weight.

>

> Regards.

What do you mean exactly? Can you be a little more specific? I would be

interested in discussing this topic...

[Guest guest]

on 5/5/02 12:12 AM, bigwoodward at jason.woodward@... wrote:

> I'm curious if anyone has any insight on rosacea as related to

> weight.

>

> Regards.

What do you mean exactly? Can you be a little more specific? I would be

interested in discussing this topic...

[Guest guest]

Sorry for not being more specific. I was curious to find out if

anyone has experienced improvement in correlation with weight loss.

It may be just sheer coincidence, but I noticed that my symptoms

appeared when I gained about 20-30 lbs (and lost muscle tone)over a

couple years. I'm working it off now, but am only beginning.

I'm also going to quit smoking (only 2-3 cigs a day now), but figure

it can't hurt to stop.

Weight/smoking were two side effects of working at Enron and going to

business school. Ha Ha, I think?

[Guest guest]

Sorry for not being more specific. I was curious to find out if

anyone has experienced improvement in correlation with weight loss.

It may be just sheer coincidence, but I noticed that my symptoms

appeared when I gained about 20-30 lbs (and lost muscle tone)over a

couple years. I'm working it off now, but am only beginning.

I'm also going to quit smoking (only 2-3 cigs a day now), but figure

it can't hurt to stop.

Weight/smoking were two side effects of working at Enron and going to

business school. Ha Ha, I think?

[Guest guest]

Sorry for not being more specific. I was curious to find out if

anyone has experienced improvement in correlation with weight loss.

It may be just sheer coincidence, but I noticed that my symptoms

appeared when I gained about 20-30 lbs (and lost muscle tone)over a

couple years. I'm working it off now, but am only beginning.

I'm also going to quit smoking (only 2-3 cigs a day now), but figure

it can't hurt to stop.

Weight/smoking were two side effects of working at Enron and going to

business school. Ha Ha, I think?

[Guest guest]

Also, what I was thinking is that when people gain weight their eating

habits are heavier (no pun intended!) in carbs like pasta's, bread's,

sweets, junk foods maybe. Whenever I am pretty religious in eating lots of

veggies, some fruits, fish, some chicken or turkey, whole grains like brown

rice or maybe quinoa, I always lose weight easily. I flare AND gain back

that extra 15-20 whenever I start eating the other way...

on 5/5/02 10:01 PM, ruizdelvizo at ruizdelvizo@... wrote:

> Hi,

>

> I would think you have to exert more effort if you're heavier to move

> around and that might possibly exacerbate a heat-related flare. I

> don't think that twenty to thirty pounds would make that much a

> difference as a weight gain of 100+ pounds.

>

> Take care,

> Matija

>

>

>> Sorry for not being more specific. I was curious to find out if

>> anyone has experienced improvement in correlation with weight

> loss.

>> It may be just sheer coincidence, but I noticed that my symptoms

>> appeared when I gained about 20-30 lbs (and lost muscle tone)over a

>> couple years. I'm working it off now, but am only beginning.

>>

>> I'm also going to quit smoking (only 2-3 cigs a day now), but

> figure

>> it can't hurt to stop.

>>

>> Weight/smoking were two side effects of working at Enron and going

> to

>> business school. Ha Ha, I think?

[Guest guest]

Also, what I was thinking is that when people gain weight their eating

habits are heavier (no pun intended!) in carbs like pasta's, bread's,

sweets, junk foods maybe. Whenever I am pretty religious in eating lots of

veggies, some fruits, fish, some chicken or turkey, whole grains like brown

rice or maybe quinoa, I always lose weight easily. I flare AND gain back

that extra 15-20 whenever I start eating the other way...

on 5/5/02 10:01 PM, ruizdelvizo at ruizdelvizo@... wrote:

> Hi,

>

> I would think you have to exert more effort if you're heavier to move

> around and that might possibly exacerbate a heat-related flare. I

> don't think that twenty to thirty pounds would make that much a

> difference as a weight gain of 100+ pounds.

>

> Take care,

> Matija

>

>

>> Sorry for not being more specific. I was curious to find out if

>> anyone has experienced improvement in correlation with weight

> loss.

>> It may be just sheer coincidence, but I noticed that my symptoms

>> appeared when I gained about 20-30 lbs (and lost muscle tone)over a

>> couple years. I'm working it off now, but am only beginning.

>>

>> I'm also going to quit smoking (only 2-3 cigs a day now), but

> figure

>> it can't hurt to stop.

>>

>> Weight/smoking were two side effects of working at Enron and going

> to

>> business school. Ha Ha, I think?

[Guest guest]

Hi,

I would think you have to exert more effort if you're heavier to move

around and that might possibly exacerbate a heat-related flare. I

don't think that twenty to thirty pounds would make that much a

difference as a weight gain of 100+ pounds.

Take care,

Matija

> Sorry for not being more specific. I was curious to find out if

> anyone has experienced improvement in correlation with weight

loss.

> It may be just sheer coincidence, but I noticed that my symptoms

> appeared when I gained about 20-30 lbs (and lost muscle tone)over a

> couple years. I'm working it off now, but am only beginning.

>

> I'm also going to quit smoking (only 2-3 cigs a day now), but

figure

> it can't hurt to stop.

>

> Weight/smoking were two side effects of working at Enron and going

to

> business school. Ha Ha, I think?

[Guest guest]

Hi,

I would think you have to exert more effort if you're heavier to move

around and that might possibly exacerbate a heat-related flare. I

don't think that twenty to thirty pounds would make that much a

difference as a weight gain of 100+ pounds.

Take care,

Matija

> Sorry for not being more specific. I was curious to find out if

> anyone has experienced improvement in correlation with weight

loss.

> It may be just sheer coincidence, but I noticed that my symptoms

> appeared when I gained about 20-30 lbs (and lost muscle tone)over a

> couple years. I'm working it off now, but am only beginning.

>

> I'm also going to quit smoking (only 2-3 cigs a day now), but

figure

> it can't hurt to stop.

>

> Weight/smoking were two side effects of working at Enron and going

to

> business school. Ha Ha, I think?

[Guest guest]

Hi,

I would think you have to exert more effort if you're heavier to move

around and that might possibly exacerbate a heat-related flare. I

don't think that twenty to thirty pounds would make that much a

difference as a weight gain of 100+ pounds.

Take care,

Matija

> Sorry for not being more specific. I was curious to find out if

> anyone has experienced improvement in correlation with weight

loss.

> It may be just sheer coincidence, but I noticed that my symptoms

> appeared when I gained about 20-30 lbs (and lost muscle tone)over a

> couple years. I'm working it off now, but am only beginning.

>

> I'm also going to quit smoking (only 2-3 cigs a day now), but

figure

> it can't hurt to stop.

>

> Weight/smoking were two side effects of working at Enron and going

to

> business school. Ha Ha, I think?

[Guest guest]

My son is 2 1/2. He was diagnosed at 4 months after a bout of dehydration.

He is pancreatic sufficient and does not have growth problems. He is on the

slim side but so is his dad (6'3 " and 160 lb.). " Typically " children with

cf have problems putting on weight but there are exceptions to every rule.

Angie

Weight

> Me again. Questions #2 of a million...

>

> As I mentioned earlier, my daughter is being investigated for CF after

having a sweat test result of 64. I'm afraid that I'm not terribly convinced

by this potential RE-diagnosis (we were previously diagnosed with a

metabolic disorder) because, and I may be wrong, but it seems the bulk of CF

children are underweight or failing to thrive. Is this true or simply a

myth?

>

> My daughter, Madie, is 23 months (November 26/2000) and weighs between 35

and 40 pounds (depending upon kidney related fluid retention), and stands

3'3 " tall. She's a very big girl for her age and has been her whole life.

(When she was born she weighed 9 pounds 4 ounces and was 22 " long.) Albeit,

she comes by it honestly, her Dad is a 300 pound 6'7 " bodybuilder, and I'm

5'10 " and 145 pounds, I can't see that this type of growth would be typical

or symptomatic of a CF child.

>

> Please, any input would be so appreciated.

>

> Hugs,

> Jana

>

>

>

>

[Guest guest]

My son is 2 1/2. He was diagnosed at 4 months after a bout of dehydration.

He is pancreatic sufficient and does not have growth problems. He is on the

slim side but so is his dad (6'3 " and 160 lb.). " Typically " children with

cf have problems putting on weight but there are exceptions to every rule.

Angie

Weight

> Me again. Questions #2 of a million...

>

> As I mentioned earlier, my daughter is being investigated for CF after

having a sweat test result of 64. I'm afraid that I'm not terribly convinced

by this potential RE-diagnosis (we were previously diagnosed with a

metabolic disorder) because, and I may be wrong, but it seems the bulk of CF

children are underweight or failing to thrive. Is this true or simply a

myth?

>

> My daughter, Madie, is 23 months (November 26/2000) and weighs between 35

and 40 pounds (depending upon kidney related fluid retention), and stands

3'3 " tall. She's a very big girl for her age and has been her whole life.

(When she was born she weighed 9 pounds 4 ounces and was 22 " long.) Albeit,

she comes by it honestly, her Dad is a 300 pound 6'7 " bodybuilder, and I'm

5'10 " and 145 pounds, I can't see that this type of growth would be typical

or symptomatic of a CF child.

>

> Please, any input would be so appreciated.

>

> Hugs,

> Jana

>

>

>

>

[Guest guest]

My son is 2 1/2. He was diagnosed at 4 months after a bout of dehydration.

He is pancreatic sufficient and does not have growth problems. He is on the

slim side but so is his dad (6'3 " and 160 lb.). " Typically " children with

cf have problems putting on weight but there are exceptions to every rule.

Angie

Weight

> Me again. Questions #2 of a million...

>

> As I mentioned earlier, my daughter is being investigated for CF after

having a sweat test result of 64. I'm afraid that I'm not terribly convinced

by this potential RE-diagnosis (we were previously diagnosed with a

metabolic disorder) because, and I may be wrong, but it seems the bulk of CF

children are underweight or failing to thrive. Is this true or simply a

myth?

>

> My daughter, Madie, is 23 months (November 26/2000) and weighs between 35

and 40 pounds (depending upon kidney related fluid retention), and stands

3'3 " tall. She's a very big girl for her age and has been her whole life.

(When she was born she weighed 9 pounds 4 ounces and was 22 " long.) Albeit,

she comes by it honestly, her Dad is a 300 pound 6'7 " bodybuilder, and I'm

5'10 " and 145 pounds, I can't see that this type of growth would be typical

or symptomatic of a CF child.

>

> Please, any input would be so appreciated.

>

> Hugs,

> Jana

>

>

>

>

[Guest guest]

Yes it can be rare for cfer's not to have any pancreatic problems. I know a

gal who has constant lung problems, yet NEVER had any type of weight

problems in her life. She was diagnosed in her early 20's due to her lung

problems. I have also heard of kids who don't have ANY of the " typical "

problems with CF and still have it. Genetics is a funny thing. Have they

run a genetics test on her? (sorry if you've already answered that one, I'm

behind on my e-mails, been a llloooooonnnnnggggg week, lol) I hope you find

an answer soon.

Jen A. mom to 4, Yolo 2 1/2, and Phynix 6 months, all w/cf.

>

>Reply-To: cfparents

>To: Cystic Fibrosis Support cfparents >

>Subject: Weight

>Date: Sat, 02 Nov 2002 14:51:21 -0800

>

>Me again. Questions #2 of a million...

>

>As I mentioned earlier, my daughter is being investigated for CF after

>having a sweat test result of 64. I'm afraid that I'm not terribly

>convinced by this potential RE-diagnosis (we were previously diagnosed with

>a metabolic disorder) because, and I may be wrong, but it seems the bulk of

>CF children are underweight or failing to thrive. Is this true or simply a

>myth?

>

>My daughter, Madie, is 23 months (November 26/2000) and weighs between 35

>and 40 pounds (depending upon kidney related fluid retention), and stands

>3'3 " tall. She's a very big girl for her age and has been her whole life.

>(When she was born she weighed 9 pounds 4 ounces and was 22 " long.) Albeit,

>she comes by it honestly, her Dad is a 300 pound 6'7 " bodybuilder, and I'm

>5'10 " and 145 pounds, I can't see that this type of growth would be typical

>or symptomatic of a CF child.

>

>Please, any input would be so appreciated.

>

>Hugs,

>Jana

>

>

>

>

[Guest guest]

Yes it can be rare for cfer's not to have any pancreatic problems. I know a

gal who has constant lung problems, yet NEVER had any type of weight

problems in her life. She was diagnosed in her early 20's due to her lung

problems. I have also heard of kids who don't have ANY of the " typical "

problems with CF and still have it. Genetics is a funny thing. Have they

run a genetics test on her? (sorry if you've already answered that one, I'm

behind on my e-mails, been a llloooooonnnnnggggg week, lol) I hope you find

an answer soon.

Jen A. mom to 4, Yolo 2 1/2, and Phynix 6 months, all w/cf.

>

>Reply-To: cfparents

>To: Cystic Fibrosis Support cfparents >

>Subject: Weight

>Date: Sat, 02 Nov 2002 14:51:21 -0800

>

>Me again. Questions #2 of a million...

>

>As I mentioned earlier, my daughter is being investigated for CF after

>having a sweat test result of 64. I'm afraid that I'm not terribly

>convinced by this potential RE-diagnosis (we were previously diagnosed with

>a metabolic disorder) because, and I may be wrong, but it seems the bulk of

>CF children are underweight or failing to thrive. Is this true or simply a

>myth?

>

>My daughter, Madie, is 23 months (November 26/2000) and weighs between 35

>and 40 pounds (depending upon kidney related fluid retention), and stands

>3'3 " tall. She's a very big girl for her age and has been her whole life.

>(When she was born she weighed 9 pounds 4 ounces and was 22 " long.) Albeit,

>she comes by it honestly, her Dad is a 300 pound 6'7 " bodybuilder, and I'm

>5'10 " and 145 pounds, I can't see that this type of growth would be typical

>or symptomatic of a CF child.

>

>Please, any input would be so appreciated.

>

>Hugs,

>Jana

>

>

>

>

[Guest guest]

No, Jen, a genetics test has yet to be run. The only evidence we have at the

moment is a sweat test with a result of 64. I'm assuming that at her

appointment this week, it'll be arranged for continued testing. Thank you

for the information.

Jana

Weight

> >Date: Sat, 02 Nov 2002 14:51:21 -0800

> >

> >Me again. Questions #2 of a million...

> >

> >As I mentioned earlier, my daughter is being investigated for CF after

> >having a sweat test result of 64. I'm afraid that I'm not terribly

> >convinced by this potential RE-diagnosis (we were previously diagnosed

with

> >a metabolic disorder) because, and I may be wrong, but it seems the bulk

of

> >CF children are underweight or failing to thrive. Is this true or simply

a

> >myth?

> >

> >My daughter, Madie, is 23 months (November 26/2000) and weighs between 35

> >and 40 pounds (depending upon kidney related fluid retention), and stands

> >3'3 " tall. She's a very big girl for her age and has been her whole life.

> >(When she was born she weighed 9 pounds 4 ounces and was 22 " long.)

Albeit,

> >she comes by it honestly, her Dad is a 300 pound 6'7 " bodybuilder, and

I'm

> >5'10 " and 145 pounds, I can't see that this type of growth would be

typical

> >or symptomatic of a CF child.

> >

> >Please, any input would be so appreciated.

> >

> >Hugs,

> >Jana

> >

> >

> >

> >

[Guest guest]

I personally didnt think it was necessary as long as you drink

enough. Since I been going to work 2 weeks after surgery and don't

have time to blend stuff I take Boost the one with extra protein and

is green on the bottle. I take it whenever I'm hungry and all that.

They taste great and will help you maintain your weight.

[Guest guest]

In a message dated 1/9/2006 12:43:56 PM Eastern Standard Time,

maryann127@... writes:

Then I went out and bought all new makeup afterward. New body. New

hair. New makeup!

Atta girl! You deserve it!

[Guest guest]

What a bummer!!!!!!!

Oh, ann, I am SO SO SO sorry for you! I sure hope your arm improves....

maybe

there's some physical therapy or something. You haven't said what your

condition is, but,

here I am, feeling all bent of of shape that I get bored doing the stationary

bike, and that I

have not been rollerblading either around the island we live on in Boston, or

the Rose

Bowl, when I'm in SoCal, and you can't even get out of your power scooter to

exercise your

arms!!! That really puts it in perspective! You start feeliing sorry for

yourself, and then

you realize how lucky you really are! I love all your posts, ann, and wish

there was

something that could make things easier, or more exciting, or something, for

you. But, I

suppose that when people have certain debilitating conditions, the mind is an

amazing

thing, and possibly they adjust, or find other sources of excitement or

pleasure. STILL, it

really and truly isn't fair. . . .but I will not go on with this. Because I

only start feeling

worse when I begin to lament, really. But I just admire your pluck and

persistence.... Hang

in and keep going!

Annie

>

> No, I can't do upper body exercises any more because I was injured

> when my power scooter tipped over and landed on top of me, pinning me

> to the cement. I can't do any exercises with my arm now.

>

> ann

>

[Guest guest]

How wonderful, ann. Congratulation, you are doing it!! It is a

great feeling, isn’t it. You go girl!

in Maine

weight

I took off 9 lbs last week and am down to 237 (that is the 4 I gained,

plus 5 more). That is 64 lbs off, down from 301. Only 12 more to go to

get to my next mini goal of 225.

We visited our old church yesterday, and nobody there has seen me in a

year. About 10 people came up to me to tell me that " I look great. "

Boy, did that feel good to hear. And three people had no idea who I

was, so I had to tell them! They looked shocked, LOL! It sure felt

great.

Then I went out and bought all new makeup afterward. New body. New

hair. New makeup!

ann

_____

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[Guest guest]

YOU GO GIRL!

MB

weight

As of today, I have 65 pounds off!!

ann

Please send your recipes for inclusion in the Files to the Moderator at:

South-Beach-Diet-Getting-It-Right-owner

Reminder: The South Beach Diet is not low-carb. Nor is it low-fat. The South

Beach Diet teaches you to rely on the right carbs and the right fats-the good

ones - and enables you to live quite happily without the bad carbs and bad fats.

For more on this Way Of Eating please read " The South Beach Diet " by Arthur

Agatston, MD. ISBN 1-57954-814-8