Kilos 4 Life week of March 21st

Melly · 03-21-2005, 11:00 AM

OK here we go lets rock this week.....don't forget the water challange....half your body weight in ounces......CHERI THIS MEANS YOU

BBL......work is CRAZY today!!!!!

Everyone have a great day

Melly · 03-21-2005, 11:15 AM

Hey Getinrip......why don't you quit lurkin and actually post something

DebbieG · 03-21-2005, 11:20 AM

Hi Melly.... the challenge is on ..

I am half way in my water for today .. yeah ... going to the bathroom quite a bit...
I also did my walking tape this morning ..
this week I am doing the walking everyday .. and the water ..

Good luck everyone..

Caro · 03-21-2005, 11:27 AM

here with 40 oz of water down.. lol and 40 oz to go.. bike ride with kids in.. well at least 4 miles of it..they wanted to rest and we will do 4 more miles in about an hour.. gosh i forgot how much i loved to bike ride!!!

and im determined.. ready and willing to beat this !!!

149 here i come!!

AND YES!! i am NUTS!!!

getinrip · 03-21-2005, 11:40 AM

SOMETHING !!!!!!!!!

Melly · 03-21-2005, 11:45 AM

O great ...........a comedian

cheri · 03-21-2005, 12:01 PM

Quote:

Originally posted by Melly
OK here we go lets rock this week.....don't forget the water challange....half your body weight in ounces......CHERI THIS MEANS YOU

BBL......work is CRAZY today!!!!!

Everyone have a great day

Okay, Okay... I get the hint... I downed just one glass so far... going to go have another right now... with lots of crushed ice!!

Eating is well... okay...

I have had 2 hot wings and 1 deviled egg so far... I need to get some veggies going as well...

I need everyone to keep on me about the water/vitamins and all.. I have a goal to make and it is hanging up in my living room!! I will be wearing it in TN as long as I keep staying on track... so PLEASE help me!!

cheri

getinrip · 03-21-2005, 12:06 PM

Hello melly and to everyone that follows !

nice to meet all of you..i hear ya deb on the bathroom thing...i only drank 50 so far and cant stay out..only 100 more to go yeppie..

.
mel i thought you would like that..im a funny guy...not ..well take care people ...and KEEP IT MOVING...

Melly · 03-21-2005, 01:43 PM

Debbie and Caro ............. great job on the water......keep on til you slosh when you walk

Cheri that dress is gonna look great.....do you have a wonder bra? I see potential for hella cleavage

getinrip ....welcome aboard the psycho thread..oops I mean the Kilos 4 Life thread. There is alot of great support here. Don't run away we are really quite harmless....well most of us anyway

.....and those that aren't have had their shots

DebbieG · 03-21-2005, 03:08 PM

I am on my last bottle of water.. 84.5 oz for today at work.. you would think that was all I did ...

Cheri I love that dress, you will look gorgous in that.. keep up the great work..

getingrip.. you can get that water down I know .. but just as much comes out as goes in I think .. at least until our bodies get use to that much water... glad I am close to the bathroom here at work ..

Caro you mentioned bike riding.. I have not done that in a while .. I will have to dust my bike off and see if I remember how...

Everyone have a wondeful evening...

03-21-2005, 06:36 PM

It's just like riding a bike!

Melly · 03-21-2005, 08:35 PM

Honey I'm Home!!!!!!!!

Just got home from work....OMG they had the friggin air on in there tonight.....thank God I went home inbetween and changed clothes and grabbed a dang coat.....I wore it all night

I'm headed to chat.....just trying to get my post count up

DawnaG · 03-21-2005, 10:55 PM

I walked 90 min. On the Gazelle & got my water in & stayed on plan

Now on to tommorow.......

DawnaG · 03-21-2005, 10:56 PM

Cheri~ you will look so good in that dress!

03-22-2005, 02:25 AM

as I don't think I'd be very good company for anyone right now. I've always said life can turn on a dime and sometimes it's not for the best.

I've always known my maternal instincts were exceptionally strong. Perhaps this was borne out of the fact that when I had my first child at 28, I came home from the hospital a single mother (I ended my first marriage when I was only 10 weeks pregnant....necessity, not choice) so had to assume the roles of both mom and dad right off the bat. When my son was a mere few weeks old, a man carelessly flicked his cigarette butt as he walked into a shopping mall such that it hit my son's car seat in which I carried him. Instantly realizing the potential burns that could have happened had it landed unnoticed in the carrier, I'm quite sure that, by the time I was finished with that fellow, he more than likely wished he had never gotten out of bed that day. It was that day that I realized to what lengths I (and I'm sure most other parents) would go to to protect their children. It was a discovery that was both powerful and scarey, primal yet so 'now' in terms of what I had a become..a mother. At that moment, I knew I could do this..alone or not.

And so we go on, confident that we can protect them always...as most of you know, I remarried a number of years ago and have gone on to have two more beautiful children. I look at the perfectness of my children every day..marvel at what miracles they are...and thank god that they are healthy and happy. I must have let my guard down

My husband came home early from work last night. He told me he had something to tell my about his health. Now, my husband has some disabilities...all attributal to a terrible accident he had at the age of 11..a head on collison with a moving pickup truck..a hit and run...so I assume that waht he had to tell me was related to the difficulties he experiences from those injuries. But last night he told me that 6 months ago, his mother (now well into her 80's) told her that his father was diagnosed with a disease called Charcot-Marie-Tooth (CMT) disease three years before he died (which would have made it 9 years ago now) and that she had never told anyone in the family. CMT is a peripheral neuromyopathy that falls under the blanket of Muscular Dystrophy. There is no cure. I have now had 24 hours to research this disease and it has raised some very ugly feelings in me that I have no hope of reconciling at this point. First and foremost, I do not believe that my husband didn't know he had this. His disabilities are EXACTLY typical of this disease. The symptoms typically present during adolescence so I also do not believe his family or family doctor would not have known what he had unless they collectively were complete morons. And I now do not believe the story of the accident at 11 years old. I think the accident story was just that..a story ...a complete fabrication to explain away the symptoms of this disease. I truly believe he deliberately mislead me since long before we were married. I'll never know the answers to this short of getting my hands on his medical records, which I know is almost impossible to do

If I had proof that he has done this, I would end my marriage in a heartbeat.

What makes this so very very heartbreaking for me is the fact that this disease is genetic. Inherited in an autosomal dominant pattern. This means that my two youngest children now stand a 50% chance of having inherited this from their father. I look at my beautiful daughter now and can't help but wonder if I'll be seeing her at 20 wearing braces and having to stand with assistance..maybe even being confined to a wheelchair. And my baby boy..my precious baby boy...he just took his first steps on his own yesterday ..how many more will my baby Joshua have? Never have I cried so hard and for so long as I have in the last 24 hours. I'm supposed to be able to protect my children. I am crying as I write this now, and I know it will be a long night of crying when I'm finished writing to you.

I'm fully aware that many children and families suffer through far more terrible things than this but for me, I can't help but feel the suffering they may go through in thier lives could have been avoidable. People with genetic diseases such as this are generally counseled to not have children for risk of passing on the disease. To have done so fully knowing the risks is to me the most selfish thing a person could have ever done. If he did this, I will NEVER forgive him. This doubt is going to be a terrible weight to bear.

I now have to make arrangements to have my children undergo testing to see if they do indeed carry the genetic marker for CMT. IF there is any upside to this, it is in the fact that I had two miscarriages also which helps a wee bit to ofset the % probability for my two youngest. It is important for me ( and them as they get older) to know if they have inherited this or not as there is a long list of drugs that can make the symptoms far worse..even some simple, commonly prescribed antibiotics. Keeping them active is going to be a big part of keeping them symptom free in order to maintain as much muscle tone as possible in their extremites. Now I have an even greater driving force to stay on plan and become as healthy as I can be...I have to live by example to my children for one more reason now. Every second I pray that the testing will show that they did not inherit this disease. This mother's heart is breaking into a million pieces. My children are my world.

I love you all and think of you all as wonderful friends, but please understand that I have to deal with this first before I can be of any support to this group. I'll pop in from time to time and read your posts...just don't be surprised if you don't hear from me for a while. Hopefully just a few days to pull myself together.

Mandy
xoxox's

Ceige · 03-22-2005, 05:19 AM

Omg Mandy =( I totally understand how you feel about KNOWING of genetic problems and deciding NOT to have children, because I personally feel that knowing I have the genetic history that I have I will probably do all I can to NOT have kids no matter how bad I want them. Im so sorry you have had this hidden from you, Im sorry that you had to just now go through what you have gone through in the past 24 hours.

We know how much your children mean to you, and it obvious you are a great mother. Thats what you have ot hold on to. You have to just hold them close to your heart and know that they are still your perfect beautiful children no matter what comes of the test.

I feel anger for you towards your husband, I would feel the same way in your position, and would probably take some anger out on him if I had the opportunity =P

Again Im sorry you have had to go through this with your children being so young. Just know you have friends, and people her that care dearly for you and your causes, and will never let you down if you ever need to vent or just talk about anything.

Ceige

Caro · 03-22-2005, 05:19 AM

oh mandy..all i can do is offer many hugs and love!!! i know we all make any and every sacrifice for our kids... i pray things go well!!!

on the upswing of things...

drink your water.. ok so yesterday i DRINK my water and i EXERCISE!.. hmm..wait.. and i eat ON plan.. wonder what happens when you do that???
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YOU HAVE A FREAKIN 4..yes FOUR.. pound WHOOSH!!! 153 baby!! and 12 oz down for the day!!!

roro · 03-22-2005, 06:50 AM

Mandy

and

I have just learned some about this disease. I joined www.braintalk.org and it is a wonderful site, please check it out there is a guy named army something on the general neurology and rare diseases board who has CMT.
And please dont blame his your husband. I dont even know him or his doctors, but in one paragraph I am convinced that they did NOT know he had this and just carelessly blamed it on his accident. I know for a fact that 99% of doctors are complete idiots and have no clue how to diagnose disease. most of what they learn in med school is ER care (how to put out fires) and how to prescribe medicine for symptoms. as far as analysing aymptoms and diagnosing long term chronic diseases, there are very few doctors who have experience in doing that. I can tell you so many stories about people that have an experience exactly like your husband. I have a friend who has had back problems and pain since she was a little girl, they blamed it on a fall she had as a child. she had had many surgeries on her back, treatments, etc. Finally a few years ago (she is in her 40's) a doctor has diagnosed her with marfan syndrome. I looked up marfan syndrome and it fits her exactlky to a T. She has long thin arms and legs, long skinny hands and feet, her chest bones protrude. If you look up marfan in the dictionary, there is a picture of her right there. How can doctor after doctor misdiagnose her for years and years? BECAUSE THEY ARE ALL IDIOTS!!!! And the worst part of it is that most of them are arrogant idiots, who THINK they DO know it all, so they are unwilling to even learn. I have a cousin who has been in pain for 20 years. about ten years ago they told her it was fibromyalgia.

finally, a couple years ago she finds out she has arthritis. she has had it all along, it has progressed so bad she has had 2 knee and one hip replacememnt. and arthritis is NOT a rare disease

I used to belong to a CFS and FMS board, and week after week one of our members, who has been suffering for anywhere from 5 to 15 years, would finally be diagnosed with a REAL disease, like MS, ALS, celiac, cancer, whatever. I used to have a diagnosis of CFS, I have decided that CFS and FMS are just labels they put on us to shut us up when they cant figure out yet what we have. I have been ill for a long time and they still havent figured out whats wrong with me. I am sorry I am ranting but this stuff just makes me so mad. I have a friend who is a doctor, I just talked to him after not seeing him for 20 years, and he said the same thing. Most doctors are idiots. I hope you come back and read this, please respond when you do.

well, I went to the wedding. took pictures. lost the camera

I am sure other people will send me some pictures, so I will post them or maybe someone will turn in our camera. anyway, it was a lovely wedding. yesterday I tried to read and post but my eyes hurt too much. I am having a lot of trouble with my eyes, so if I dont post as much, thats why.

I ate like a pig all weekend, so I am back on induction again today. 3-4 days of induction, and then I plan to move to OWL. lots of water. i dont know yet about exercise, i am going to a pain clinic soon, maybe they can help with therapy and re-conditioning. I am going to try and walk a little when I am feeling well, which isnt very often.

welcome to mary, debbie, and getinrip!!!

Melly · 03-22-2005, 07:16 AM

Good morning to all........it felt good to sleep in....I have a Doctors appt shortly so I decided to post before I went.

Dawna you are doing so well........better than you have in the entire time I have known you......WOOOO HOOOO for YOU!!!! Don't stop girl.....and tell your hubby he better recognize the beautiful woman he has inside and out or she might just get taken right from under his very own nose

Mandy.....my heart breaks for you.....anyone that knows me knows that there are 2 things with me that you don't mess with.....my mama and my babies!!!! I won't waste alot of words because I am sure that words are no where near enough to comfort you right now.....I will just say that I will be praying continuously that God will show mercy and tenderness where your family is concerned and heal this wound and protect your babies. I love you sistah girl and am here if you need any little ole thing

mimi · 03-22-2005, 07:24 AM

Dear Mandy,

First and foremost, I feel that you will be in my thoughts and prayers the majority of this rainy day in St. Louis.

Secondly, I hope you reconcile the anger that you rightfully feel today. Beyond that <sigh>, is where you are bound to find some answers though. God gave you those beautiful children, Mandy, so despite what you or they could face, somehow this ugly situation will bring you much more than the "driving force" and power you've already recognized.

I spend a fair amount of time around kids who have been handed a pretty crappy dance card in life, but as I sit here and think about your children, I am reminded how very lucky they truly are to have a mother who loves and adores them as you do.

My cousin has a severely disabled child, and I often hear her say to me "It really makes me mad when people say, 'god only gives these kids to those who have the strength to handle them'." I don't think anyone could ever be 'better equipped' to handle seeing their own child suffer or feel pain. I guess it didn't occur to your husband that this disease might severely manifest itself in your children. *shakes head* We will pray it doesn't.

This is definitely an instance where *online * just sucks, so I offer a hug and a tissue...And as such, our basic needs remain: food, clothing, shelter, and love. Amie

P>S Call anytime. pm'd you my phone.

03-22-2005, 08:16 AM

I wish I had more words of wisdom for you, normally I'm a smart guy and fairly glib with words, but I don't know what path you should be on right now. You don't trust your husband, yet you can't prove that he intentionally deceived you. Your kids have even odds of contracting a debilitating condition. I can understand your grief, but you're in a very analytical place right now, doing the research, weighing the odds. You have a ways to go before you hear what your heart is saying.

Cheri, pretty dress! A good goal for you, can't wait to see you wearing it in June!

I have to run, I have a meeting... go Kilo!!!!!!

Dan

DawnaG · 03-22-2005, 08:57 AM

Mandy~ your in my prayers... Just keep a positive outlook & don't let anger cause you to get sick, In which I can totally see why you are angry as I would be also.

Melly~

You will never ever know how much your supposrt helps keep me on track!
I do need alot of it this week because guess what Sunday is? Oh yes Easter & the return of the girl!!!! that my hubby seems to have so much fun with! oh Lord just pray I have broke this stall and lost somemore by then so I will feel some kind of accomplishment! I will take a pic of me in my East dress & you guys let me know what you think ok~ Love 2 all

ShellyW · 03-22-2005, 08:58 AM

Mandy you are in thoughs and prayers. I know at this point there isnt much any of us can say... My children, were both with central nervous system issues.. more then likely genetic and nothing as physically dehabiltating as what you are describing... I understand the need to "get it" sorted before being of help to anyone. I hope your children are the other 50%... I hope you figure out what you need to do to move on..

We are all here if you need us.. I wish you all the luck and God's Graces ..

that1redhead · 03-22-2005, 09:11 AM

Mandy -

DebbieG · 03-22-2005, 10:31 AM

Mandy, I am so sorry to hear what is going on in your life.. you will be added to my prayer list as well as your precious children..

Please know that we must live each day to its fullest.. as we don't know what tomorrow brings.. enjoy every moment with those babies.

It shows in your message that you love them so much.. keep a positive attitude and you will get through this.. you have many prayers and support going for you and your children..

I do hope you find out that your husband would not do this to you and keep this a secret.

You are surrounded by light... God is on your side..

03-21-2005, 11:00 AM	#1
Melly Its all about me! Join Date: Aug 2003 Location: La La Land Usually Posts: 6,832 Gallery: Melly Stats: CRAP!!/not there yet/comfortable WOE: WW - Core Start Date: June 9, 2003	Kilos 4 Life week of March 21st OK here we go lets rock this week.....don't forget the water challange....half your body weight in ounces......CHERI THIS MEANS YOU BBL......work is CRAZY today!!!!! Everyone have a great day

03-21-2005, 03:08 PM	#10
DebbieG Junior LCF Member Join Date: May 2004 Location: Alabama Posts: 21 Gallery: DebbieG Stats: 205/205/160 WOE: Atkins Start Date: 04/2005	I am watered out .. I am on my last bottle of water.. 84.5 oz for today at work.. you would think that was all I did ... Cheri I love that dress, you will look gorgous in that.. keep up the great work.. getingrip.. you can get that water down I know .. but just as much comes out as goes in I think .. at least until our bodies get use to that much water... glad I am close to the bathroom here at work .. Caro you mentioned bike riding.. I have not done that in a while .. I will have to dust my bike off and see if I remember how... Everyone have a wondeful evening...

03-21-2005, 06:36 PM	#11
Dano Guest Posts: n/a Gallery: Dano	Debbie It's just like riding a bike!

03-21-2005, 10:55 PM	#13
DawnaG MAJOR LCF POSTER! Join Date: Jan 2002 Location: Oklahoma Posts: 1,300 Gallery: DawnaG Stats: 184.4/184.4/130.0 WOE: atkins Induction/but not limiting veggies Start Date: 6-27-07	Hello~ I walked 90 min. On the Gazelle & got my water in & stayed on plan Now on to tommorow.......

03-21-2005, 10:56 PM	#14
DawnaG MAJOR LCF POSTER! Join Date: Jan 2002 Location: Oklahoma Posts: 1,300 Gallery: DawnaG Stats: 184.4/184.4/130.0 WOE: atkins Induction/but not limiting veggies Start Date: 6-27-07	oH I forgot.... Cheri~ you will look so good in that dress!

03-21-2005, 11:15 AM	#2
Melly Its all about me! Join Date: Aug 2003 Location: La La Land Usually Posts: 6,832 Gallery: Melly Stats: CRAP!!/not there yet/comfortable WOE: WW - Core Start Date: June 9, 2003	Hey Getinrip......why don't you quit lurkin and actually post something

03-21-2005, 11:20 AM	#3
DebbieG Junior LCF Member Join Date: May 2004 Location: Alabama Posts: 21 Gallery: DebbieG Stats: 205/205/160 WOE: Atkins Start Date: 04/2005	Hi Melly.... the challenge is on .. I am half way in my water for today .. yeah ... going to the bathroom quite a bit... I also did my walking tape this morning .. this week I am doing the walking everyday .. and the water .. Good luck everyone..

03-21-2005, 11:27 AM	#4
Caro lc hottie Join Date: Dec 2002 Location: ~eastern NC~ Posts: 17,763 Gallery: Caro Stats: see SIG! lol WOE: im not fat.. i just havent grown into my body yet. Start Date: org: 7-6-03 restart: 3-3-08	here with 40 oz of water down.. lol and 40 oz to go.. bike ride with kids in.. well at least 4 miles of it..they wanted to rest and we will do 4 more miles in about an hour.. gosh i forgot how much i loved to bike ride!!! and im determined.. ready and willing to beat this !!! 149 here i come!! AND YES!! i am NUTS!!!

03-21-2005, 11:40 AM	#5
getinrip Senior LCF Member Join Date: Feb 2004 Location: florida Posts: 155 Gallery: getinrip Stats: 345/340/225 WOE: atkins Start Date: restart 10/01/08	SOMETHING !!!!!!!!!

03-21-2005, 11:45 AM	#6
Melly Its all about me! Join Date: Aug 2003 Location: La La Land Usually Posts: 6,832 Gallery: Melly Stats: CRAP!!/not there yet/comfortable WOE: WW - Core Start Date: June 9, 2003	O great ...........a comedian

03-21-2005, 12:06 PM	#8
getinrip Senior LCF Member Join Date: Feb 2004 Location: florida Posts: 155 Gallery: getinrip Stats: 345/340/225 WOE: atkins Start Date: restart 10/01/08	Hello melly and to everyone that follows ! nice to meet all of you..i hear ya deb on the bathroom thing...i only drank 50 so far and cant stay out..only 100 more to go yeppie.. . mel i thought you would like that..im a funny guy...not ..well take care people ...and KEEP IT MOVING...

03-21-2005, 01:43 PM	#9
Melly Its all about me! Join Date: Aug 2003 Location: La La Land Usually Posts: 6,832 Gallery: Melly Stats: CRAP!!/not there yet/comfortable WOE: WW - Core Start Date: June 9, 2003	Debbie and Caro ............. great job on the water......keep on til you slosh when you walk Cheri that dress is gonna look great.....do you have a wonder bra? I see potential for hella cleavage getinrip ....welcome aboard the psycho thread..oops I mean the Kilos 4 Life thread. There is alot of great support here. Don't run away we are really quite harmless....well most of us anyway .....and those that aren't have had their shots

03-21-2005, 08:35 PM	#12
Melly Its all about me! Join Date: Aug 2003 Location: La La Land Usually Posts: 6,832 Gallery: Melly Stats: CRAP!!/not there yet/comfortable WOE: WW - Core Start Date: June 9, 2003	Honey I'm Home!!!!!!!! Just got home from work....OMG they had the friggin air on in there tonight.....thank God I went home inbetween and changed clothes and grabbed a dang coat.....I wore it all night I'm headed to chat.....just trying to get my post count up

03-22-2005, 02:25 AM	#15
MandyDee Guest Posts: n/a Gallery: MandyDee	I may not be around for a while.... as I don't think I'd be very good company for anyone right now. I've always said life can turn on a dime and sometimes it's not for the best. I've always known my maternal instincts were exceptionally strong. Perhaps this was borne out of the fact that when I had my first child at 28, I came home from the hospital a single mother (I ended my first marriage when I was only 10 weeks pregnant....necessity, not choice) so had to assume the roles of both mom and dad right off the bat. When my son was a mere few weeks old, a man carelessly flicked his cigarette butt as he walked into a shopping mall such that it hit my son's car seat in which I carried him. Instantly realizing the potential burns that could have happened had it landed unnoticed in the carrier, I'm quite sure that, by the time I was finished with that fellow, he more than likely wished he had never gotten out of bed that day. It was that day that I realized to what lengths I (and I'm sure most other parents) would go to to protect their children. It was a discovery that was both powerful and scarey, primal yet so 'now' in terms of what I had a become..a mother. At that moment, I knew I could do this..alone or not. And so we go on, confident that we can protect them always...as most of you know, I remarried a number of years ago and have gone on to have two more beautiful children. I look at the perfectness of my children every day..marvel at what miracles they are...and thank god that they are healthy and happy. I must have let my guard down My husband came home early from work last night. He told me he had something to tell my about his health. Now, my husband has some disabilities...all attributal to a terrible accident he had at the age of 11..a head on collison with a moving pickup truck..a hit and run...so I assume that waht he had to tell me was related to the difficulties he experiences from those injuries. But last night he told me that 6 months ago, his mother (now well into her 80's) told her that his father was diagnosed with a disease called Charcot-Marie-Tooth (CMT) disease three years before he died (which would have made it 9 years ago now) and that she had never told anyone in the family. CMT is a peripheral neuromyopathy that falls under the blanket of Muscular Dystrophy. There is no cure. I have now had 24 hours to research this disease and it has raised some very ugly feelings in me that I have no hope of reconciling at this point. First and foremost, I do not believe that my husband didn't know he had this. His disabilities are EXACTLY typical of this disease. The symptoms typically present during adolescence so I also do not believe his family or family doctor would not have known what he had unless they collectively were complete morons. And I now do not believe the story of the accident at 11 years old. I think the accident story was just that..a story ...a complete fabrication to explain away the symptoms of this disease. I truly believe he deliberately mislead me since long before we were married. I'll never know the answers to this short of getting my hands on his medical records, which I know is almost impossible to do If I had proof that he has done this, I would end my marriage in a heartbeat. What makes this so very very heartbreaking for me is the fact that this disease is genetic. Inherited in an autosomal dominant pattern. This means that my two youngest children now stand a 50% chance of having inherited this from their father. I look at my beautiful daughter now and can't help but wonder if I'll be seeing her at 20 wearing braces and having to stand with assistance..maybe even being confined to a wheelchair. And my baby boy..my precious baby boy...he just took his first steps on his own yesterday ..how many more will my baby Joshua have? Never have I cried so hard and for so long as I have in the last 24 hours. I'm supposed to be able to protect my children. I am crying as I write this now, and I know it will be a long night of crying when I'm finished writing to you. I'm fully aware that many children and families suffer through far more terrible things than this but for me, I can't help but feel the suffering they may go through in thier lives could have been avoidable. People with genetic diseases such as this are generally counseled to not have children for risk of passing on the disease. To have done so fully knowing the risks is to me the most selfish thing a person could have ever done. If he did this, I will NEVER forgive him. This doubt is going to be a terrible weight to bear. I now have to make arrangements to have my children undergo testing to see if they do indeed carry the genetic marker for CMT. IF there is any upside to this, it is in the fact that I had two miscarriages also which helps a wee bit to ofset the % probability for my two youngest. It is important for me ( and them as they get older) to know if they have inherited this or not as there is a long list of drugs that can make the symptoms far worse..even some simple, commonly prescribed antibiotics. Keeping them active is going to be a big part of keeping them symptom free in order to maintain as much muscle tone as possible in their extremites. Now I have an even greater driving force to stay on plan and become as healthy as I can be...I have to live by example to my children for one more reason now. Every second I pray that the testing will show that they did not inherit this disease. This mother's heart is breaking into a million pieces. My children are my world. I love you all and think of you all as wonderful friends, but please understand that I have to deal with this first before I can be of any support to this group. I'll pop in from time to time and read your posts...just don't be surprised if you don't hear from me for a while. Hopefully just a few days to pull myself together. Mandy xoxox's

03-22-2005, 05:19 AM	#16
Ceige Junior LCF Member Join Date: Jun 2004 Location: St. Charles, MO Posts: 54 Gallery: Ceige Stats: 236/224/135 WOE: Atkins Start Date: Feb 06/Restarted Sept/01/07	Omg Mandy =( I totally understand how you feel about KNOWING of genetic problems and deciding NOT to have children, because I personally feel that knowing I have the genetic history that I have I will probably do all I can to NOT have kids no matter how bad I want them. Im so sorry you have had this hidden from you, Im sorry that you had to just now go through what you have gone through in the past 24 hours. We know how much your children mean to you, and it obvious you are a great mother. Thats what you have ot hold on to. You have to just hold them close to your heart and know that they are still your perfect beautiful children no matter what comes of the test. I feel anger for you towards your husband, I would feel the same way in your position, and would probably take some anger out on him if I had the opportunity =P Again Im sorry you have had to go through this with your children being so young. Just know you have friends, and people her that care dearly for you and your causes, and will never let you down if you ever need to vent or just talk about anything. Ceige __________________ Carrie K.

03-22-2005, 06:50 AM	#18
roro Way too much time on my hands! Join Date: Jun 2002 Location: columbia, maryland Posts: 10,315 Gallery: roro Stats: 165/132/132 WOE: atkins Start Date: 12-29-2000	Mandy and I have just learned some about this disease. I joined www.braintalk.org and it is a wonderful site, please check it out there is a guy named army something on the general neurology and rare diseases board who has CMT. And please dont blame his your husband. I dont even know him or his doctors, but in one paragraph I am convinced that they did NOT know he had this and just carelessly blamed it on his accident. I know for a fact that 99% of doctors are complete idiots and have no clue how to diagnose disease. most of what they learn in med school is ER care (how to put out fires) and how to prescribe medicine for symptoms. as far as analysing aymptoms and diagnosing long term chronic diseases, there are very few doctors who have experience in doing that. I can tell you so many stories about people that have an experience exactly like your husband. I have a friend who has had back problems and pain since she was a little girl, they blamed it on a fall she had as a child. she had had many surgeries on her back, treatments, etc. Finally a few years ago (she is in her 40's) a doctor has diagnosed her with marfan syndrome. I looked up marfan syndrome and it fits her exactlky to a T. She has long thin arms and legs, long skinny hands and feet, her chest bones protrude. If you look up marfan in the dictionary, there is a picture of her right there. How can doctor after doctor misdiagnose her for years and years? BECAUSE THEY ARE ALL IDIOTS!!!! And the worst part of it is that most of them are arrogant idiots, who THINK they DO know it all, so they are unwilling to even learn. I have a cousin who has been in pain for 20 years. about ten years ago they told her it was fibromyalgia. finally, a couple years ago she finds out she has arthritis. she has had it all along, it has progressed so bad she has had 2 knee and one hip replacememnt. and arthritis is NOT a rare disease I used to belong to a CFS and FMS board, and week after week one of our members, who has been suffering for anywhere from 5 to 15 years, would finally be diagnosed with a REAL disease, like MS, ALS, celiac, cancer, whatever. I used to have a diagnosis of CFS, I have decided that CFS and FMS are just labels they put on us to shut us up when they cant figure out yet what we have. I have been ill for a long time and they still havent figured out whats wrong with me. I am sorry I am ranting but this stuff just makes me so mad. I have a friend who is a doctor, I just talked to him after not seeing him for 20 years, and he said the same thing. Most doctors are idiots. I hope you come back and read this, please respond when you do. well, I went to the wedding. took pictures. lost the camera I am sure other people will send me some pictures, so I will post them or maybe someone will turn in our camera. anyway, it was a lovely wedding. yesterday I tried to read and post but my eyes hurt too much. I am having a lot of trouble with my eyes, so if I dont post as much, thats why. I ate like a pig all weekend, so I am back on induction again today. 3-4 days of induction, and then I plan to move to OWL. lots of water. i dont know yet about exercise, i am going to a pain clinic soon, maybe they can help with therapy and re-conditioning. I am going to try and walk a little when I am feeling well, which isnt very often. welcome to mary, debbie, and getinrip!!!

03-22-2005, 07:16 AM	#19
Melly Its all about me! Join Date: Aug 2003 Location: La La Land Usually Posts: 6,832 Gallery: Melly Stats: CRAP!!/not there yet/comfortable WOE: WW - Core Start Date: June 9, 2003	Good morning to all........it felt good to sleep in....I have a Doctors appt shortly so I decided to post before I went. Dawna you are doing so well........better than you have in the entire time I have known you......WOOOO HOOOO for YOU!!!! Don't stop girl.....and tell your hubby he better recognize the beautiful woman he has inside and out or she might just get taken right from under his very own nose Mandy.....my heart breaks for you.....anyone that knows me knows that there are 2 things with me that you don't mess with.....my mama and my babies!!!! I won't waste alot of words because I am sure that words are no where near enough to comfort you right now.....I will just say that I will be praying continuously that God will show mercy and tenderness where your family is concerned and heal this wound and protect your babies. I love you sistah girl and am here if you need any little ole thing __________________ We have two choices in life......live it or change it. ~Melly~ ILOVEJeNell

03-22-2005, 07:24 AM	#20
mimi Senior LCF Member Join Date: Mar 2004 Location: 'the 24' Posts: 819 Gallery: mimi Stats: lost 100+ currently don't obsess at the scale WOE: Atkins OWL Start Date: 7/5/03	....thinking about what to say Mandy Dear Mandy, First and foremost, I feel that you will be in my thoughts and prayers the majority of this rainy day in St. Louis. Secondly, I hope you reconcile the anger that you rightfully feel today. Beyond that <sigh>, is where you are bound to find some answers though. God gave you those beautiful children, Mandy, so despite what you or they could face, somehow this ugly situation will bring you much more than the "driving force" and power you've already recognized. I spend a fair amount of time around kids who have been handed a pretty crappy dance card in life, but as I sit here and think about your children, I am reminded how very lucky they truly are to have a mother who loves and adores them as you do. My cousin has a severely disabled child, and I often hear her say to me "It really makes me mad when people say, 'god only gives these kids to those who have the strength to handle them'." I don't think anyone could ever be 'better equipped' to handle seeing their own child suffer or feel pain. I guess it didn't occur to your husband that this disease might severely manifest itself in your children. shakes head We will pray it doesn't. This is definitely an instance where online just sucks, so I offer a hug and a tissue...And as such, our basic needs remain: food, clothing, shelter, and love. Amie P>S Call anytime. pm'd you my phone. Last edited by mimi : 03-22-2005 at 07:45 AM.

03-22-2005, 08:16 AM	#21
Dano Guest Posts: n/a Gallery: Dano	I'm sorry Mandy I wish I had more words of wisdom for you, normally I'm a smart guy and fairly glib with words, but I don't know what path you should be on right now. You don't trust your husband, yet you can't prove that he intentionally deceived you. Your kids have even odds of contracting a debilitating condition. I can understand your grief, but you're in a very analytical place right now, doing the research, weighing the odds. You have a ways to go before you hear what your heart is saying. Cheri, pretty dress! A good goal for you, can't wait to see you wearing it in June! I have to run, I have a meeting... go Kilo!!!!!! Dan

03-22-2005, 08:57 AM	#22
DawnaG MAJOR LCF POSTER! Join Date: Jan 2002 Location: Oklahoma Posts: 1,300 Gallery: DawnaG Stats: 184.4/184.4/130.0 WOE: atkins Induction/but not limiting veggies Start Date: 6-27-07	Goodmorning~ Mandy~ your in my prayers... Just keep a positive outlook & don't let anger cause you to get sick, In which I can totally see why you are angry as I would be also. Melly~ You will never ever know how much your supposrt helps keep me on track! I do need alot of it this week because guess what Sunday is? Oh yes Easter & the return of the girl!!!! that my hubby seems to have so much fun with! oh Lord just pray I have broke this stall and lost somemore by then so I will feel some kind of accomplishment! I will take a pic of me in my East dress & you guys let me know what you think ok~ Love 2 all __________________ Dawna~

03-22-2005, 08:58 AM	#23
ShellyW the evil twin Join Date: Jun 2002 Location: Janesville, WI Posts: 2,491 Gallery: ShellyW Stats: 235/184/145 WOE: Atkins Start Date: January 2001	Mandy you are in thoughs and prayers. I know at this point there isnt much any of us can say... My children, were both with central nervous system issues.. more then likely genetic and nothing as physically dehabiltating as what you are describing... I understand the need to "get it" sorted before being of help to anyone. I hope your children are the other 50%... I hope you figure out what you need to do to move on.. We are all here if you need us.. I wish you all the luck and God's Graces ..

03-22-2005, 09:11 AM	#24
that1redhead Very Gabby LCF Member!!! Join Date: Sep 2003 Location: North Dakota Posts: 3,543 Gallery: that1redhead Stats: 235/145 restart 225/209/145 WOE: Atkins Start Date: 1/8/04	Mandy -

03-22-2005, 10:31 AM	#25
DebbieG Junior LCF Member Join Date: May 2004 Location: Alabama Posts: 21 Gallery: DebbieG Stats: 205/205/160 WOE: Atkins Start Date: 04/2005	Mandy, I am so sorry to hear what is going on in your life.. you will be added to my prayer list as well as your precious children.. Please know that we must live each day to its fullest.. as we don't know what tomorrow brings.. enjoy every moment with those babies. It shows in your message that you love them so much.. keep a positive attitude and you will get through this.. you have many prayers and support going for you and your children.. I do hope you find out that your husband would not do this to you and keep this a secret. You are surrounded by light... God is on your side..