...hanging by a thread after two surgeries...

[Guest guest]

I am 35 was diagnosed with Achalasia at 5 months pregnant (only

child), had a Heller Myotomy that same week with Toupet Fundo 8/2005

then a redo myotomy on 6/2006. I have had all types of dialations,

botox, you name it and I am STILL SUFFERING! I am between 25-30+-

pounds underweight (I fluctuated 5 pounds when I was " normal " ) and am

stuck at 98 pounds. I still have pain swallowing, I have the most

HORRIBLE dry heaving acid spitting chest wrenching attacks usually at

night even sleeping upright. I have lost my job, I am almost too

weak to take care of my one year old whom I adore, I look like crap,

my hair is dry and falling out, my skin is dry and ugly, I have no

energy, am always tired, anxious and beginning to think I am

depressed, I have a horrible self image now as I am all bones and

noone seems to have a solution for me - UGH UGH UGH!!! The funny

thing about it is that my " bloodwork " always comes back normal like I

am healthy, I dont know how, but with less that 2 cups of food a day

by body reads as healthy in labs - crazy! I know I am not, my body

is atrophying, I see it happening, no muscle, nothing!

Anyone else out there still suffering from Achalasia that can help me

cope? I am two steps from living in a cardboard box, does anyone

know if Achalasia and its horrible effects qualify you for

disabillity, because I just dont know what to do now.

[Guest guest]

Yes you can get disability with achalasia. Its just really hard

to prove, but if you have been through the surgeries and procedures and they

are not helping you should be able to get it. I would have to look again

but your weight has to stay at a low of something like 90 for more then 3

months depending on your height and build (but that’s my code for

disability). I know if I went down to 90 which I was 98 at my worst, I

might as well be in a pine box instead of a cardboard box. Not funny but true!

I would go to the disability and SSI web pages and look it up under

gastrointestinal disease. To see where you fall!! Good luck and if anyone on

here ever needs to chat, I have free long distance and will call anyone just email

me privately!!

C Warren

Co-Founder

www.achalasia.us

From:

achalasia [mailto:achalasia ] On Behalf Of achalasiagoaway

Sent: Monday, January 15, 2007 4:30 PM

achalasia

Subject: ...hanging by a thread after two surgeries...

I am 35 was diagnosed with Achalasia at 5

months pregnant (only

child), had a Heller Myotomy that same week with Toupet Fundo 8/2005

then a redo myotomy on 6/2006. I have had all types of dialations,

botox, you name it and I am STILL SUFFERING! I am between 25-30+-

pounds underweight (I fluctuated 5 pounds when I was " normal " ) and am

stuck at 98 pounds. I still have pain swallowing, I have the most

HORRIBLE dry heaving acid spitting chest wrenching attacks usually at

night even sleeping upright. I have lost my job, I am almost too

weak to take care of my one year old whom I adore, I look like crap,

my hair is dry and falling out, my skin is dry and ugly, I have no

energy, am always tired, anxious and beginning to think I am

depressed, I have a horrible self image now as I am all bones and

noone seems to have a solution for me - UGH UGH UGH!!! The funny

thing about it is that my " bloodwork " always comes back normal like I

am healthy, I dont know how, but with less that 2 cups of food a day

by body reads as healthy in labs - crazy! I know I am not, my body

is atrophying, I see it happening, no muscle, nothing!

Anyone else out there still suffering from Achalasia that can help me

cope? I am two steps from living in a cardboard box, does anyone

know if Achalasia and its horrible effects qualify you for

disabillity, because I just dont know what to do now.

[Guest guest]

Thank you for the input, I have gone in and printed the information

to see if I may qualify but I think I am too fat (WHAT A JOKE!) looks

like I need to be about 5 pounds lighter - I cannot imagine that - to

me under a 100 lbs and shopping for kids clothes isn't normal! I

feel I stuck in a place between heaven and hell waiting for someone

to decide which button to push! Before it is all over I will

probably qualify under the Mental Disorders classification - this is

driving me nuts.

I had SUCH a good attitude in the beginning, it has since faded,

especially recently.

I feel bad for my friends and family they just dont know what to do

and I dont know how to help them help me. Eating is one of the most

wonderful things in life and for me I can never tell what will go

down and I am either flooded with suggestions or ignored. If I never

have to eat mashed potatoes again it will be too soon. I know you

all know how I feel, I just need to get as much information as I can

to see if there is any suggestions on how to have a better quality of

life as is or in the future.

I will be in touch and appreciate your support.

>

> Yes you can get disability with achalasia. Its just really hard to

prove,

> but if you have been through the surgeries and procedures and they

are not

> helping you should be able to get it. I would have to look again

but your

> weight has to stay at a low of something like 90 for more then 3

months

> depending on your height and build (but that's my code for

disability). I

> know if I went down to 90 which I was 98 at my worst, I might as

well be in

> a pine box instead of a cardboard box. Not funny but true! I would

go to the

> disability and SSI web pages and look it up under gastrointestinal

disease.

> To see where you fall!! Good luck and if anyone on here ever needs

to chat,

> I have free long distance and will call anyone just email me

privately!!

>

>

>

> C Warren

>

> Co-Founder

>

> www.achalasia.us

>

> From: achalasia [mailto:achalasia ]

On Behalf

> Of achalasiagoaway

> Sent: Monday, January 15, 2007 4:30 PM

> achalasia

> Subject: ...hanging by a thread after two surgeries...

>

>

>

> I am 35 was diagnosed with Achalasia at 5 months pregnant (only

> child), had a Heller Myotomy that same week with Toupet Fundo

8/2005

> then a redo myotomy on 6/2006. I have had all types of dialations,

> botox, you name it and I am STILL SUFFERING! I am between 25-30+-

> pounds underweight (I fluctuated 5 pounds when I was " normal " ) and

am

> stuck at 98 pounds. I still have pain swallowing, I have the most

> HORRIBLE dry heaving acid spitting chest wrenching attacks usually

at

> night even sleeping upright. I have lost my job, I am almost too

> weak to take care of my one year old whom I adore, I look like

crap,

> my hair is dry and falling out, my skin is dry and ugly, I have no

> energy, am always tired, anxious and beginning to think I am

> depressed, I have a horrible self image now as I am all bones and

> noone seems to have a solution for me - UGH UGH UGH!!! The funny

> thing about it is that my " bloodwork " always comes back normal like

I

> am healthy, I dont know how, but with less that 2 cups of food a

day

> by body reads as healthy in labs - crazy! I know I am not, my body

> is atrophying, I see it happening, no muscle, nothing!

>

> Anyone else out there still suffering from Achalasia that can help

me

> cope? I am two steps from living in a cardboard box, does anyone

> know if Achalasia and its horrible effects qualify you for

> disabillity, because I just dont know what to do now.

>

[Guest guest]

Hi!

I know, those guidelines for social security disability are

ridiculous! Keep in mind, though, that if you meet those guidelines,

you are automatically accepted for disability. That doesn't mean, if

you're not as emaciated as they think you should be, that you won't

qualify for benefits. The whole process probably goes faster if you

do meet their guidelines, though. My husband has filed for benefits

and we're still waiting for word (started the process in Sept.). I'll

warn you that they give you lots of lovely forms to fill out, and then

they give you a mental health exam. My husband is so frustrated with

his illness and inability to work, that he came off as being pretty

depressed for that (and he was just being himself)! Hang in there, I

know better times are on the way for you!

in Michigan

>

> Thank you for the input, I have gone in and printed the information

> to see if I may qualify but I think I am too fat (WHAT A JOKE!) looks

> like I need to be about 5 pounds lighter - I cannot imagine that - to

> me under a 100 lbs and shopping for kids clothes isn't normal! I

> feel I stuck in a place between heaven and hell waiting for someone

> to decide which button to push! Before it is all over I will

> probably qualify under the Mental Disorders classification - this is

> driving me nuts.

>

> I had SUCH a good attitude in the beginning, it has since faded,

> especially recently.

>

> I feel bad for my friends and family they just dont know what to do

> and I dont know how to help them help me. Eating is one of the most

> wonderful things in life and for me I can never tell what will go

> down and I am either flooded with suggestions or ignored. If I never

> have to eat mashed potatoes again it will be too soon. I know you

> all know how I feel, I just need to get as much information as I can

> to see if there is any suggestions on how to have a better quality of

> life as is or in the future.

>

> I will be in touch and appreciate your support.

>

[Guest guest]

Yes it is a joke!!! I agree. Its not like we picked this

disease!! And for someone to put a weight on us, to say that’s when we

feel our worst is terrible. I know exactly where you are, and my heart just

bleeds for you!! I know exactly what you mean about the button and which

one is gonna be pushed!! I am normally a size 10 or so, I was a size 5 at my

worst. That’s tiny for me!!! And I looked awful!! I and all the other

members are here for you, if you ever want to talk!!! Please don’t

hesitate to contact one of us, we would be more then happy to talk to you!!!!

Take care.

C Warren

Co-Founder

www.achalasia.us

From:

achalasia [mailto:achalasia ] On Behalf Of achalasiagoaway

Sent: Wednesday, January 17, 2007 8:42 AM

achalasia

Subject: Re: ...hanging by a thread after two surgeries...

Thank you for the input, I have gone in and

printed the information

to see if I may qualify but I think I am too fat (WHAT A JOKE!) looks

like I need to be about 5 pounds lighter - I cannot imagine that - to

me under a 100 lbs and shopping for kids clothes isn't normal! I

feel I stuck in a place between heaven and hell waiting for someone

to decide which button to push! Before it is all over I will

probably qualify under the Mental Disorders classification - this is

driving me nuts.

I had SUCH a good attitude in the beginning, it has since faded,

especially recently.

I feel bad for my friends and family they just dont know what to do

and I dont know how to help them help me. Eating is one of the most

wonderful things in life and for me I can never tell what will go

down and I am either flooded with suggestions or ignored. If I never

have to eat mashed potatoes again it will be too soon. I know you

all know how I feel, I just need to get as much information as I can

to see if there is any suggestions on how to have a better quality of

life as is or in the future.

I will be in touch and appreciate your support.

>

> Yes you can get disability with achalasia. Its just really hard to

prove,

> but if you have been through the surgeries and procedures and they

are not

> helping you should be able to get it. I would have to look again

but your

> weight has to stay at a low of something like 90 for more then 3

months

> depending on your height and build (but that's my code for

disability). I

> know if I went down to 90 which I was 98 at my worst, I might as

well be in

> a pine box instead of a cardboard box. Not funny but true! I would

go to the

> disability and SSI web pages and look it up under gastrointestinal

disease.

> To see where you fall!! Good luck and if anyone on here ever needs

to chat,

> I have free long distance and will call anyone just email me

privately!!

>

>

>

> C Warren

>

> Co-Founder

>

> www.achalasia.us

>

> From: achalasia

[mailto:achalasia ]

On Behalf

> Of achalasiagoaway

> Sent: Monday, January 15, 2007 4:30 PM

> achalasia

> Subject: ...hanging by a thread after two surgeries...

>

>

>

> I am 35 was diagnosed with Achalasia at 5 months pregnant (only

> child), had a Heller Myotomy that same week with Toupet Fundo

8/2005

> then a redo myotomy on 6/2006. I have had all types of dialations,

> botox, you name it and I am STILL SUFFERING! I am between 25-30+-

> pounds underweight (I fluctuated 5 pounds when I was " normal " )

and

am

> stuck at 98 pounds. I still have pain swallowing, I have the most

> HORRIBLE dry heaving acid spitting chest wrenching attacks usually

at

> night even sleeping upright. I have lost my job, I am almost too

> weak to take care of my one year old whom I adore, I look like

crap,

> my hair is dry and falling out, my skin is dry and ugly, I have no

> energy, am always tired, anxious and beginning to think I am

> depressed, I have a horrible self image now as I am all bones and

> noone seems to have a solution for me - UGH UGH UGH!!! The funny

> thing about it is that my " bloodwork " always comes back normal

like

I

> am healthy, I dont know how, but with less that 2 cups of food a

day

> by body reads as healthy in labs - crazy! I know I am not, my body

> is atrophying, I see it happening, no muscle, nothing!

>

> Anyone else out there still suffering from Achalasia that can help

me

> cope? I am two steps from living in a cardboard box, does anyone

> know if Achalasia and its horrible effects qualify you for

> disabillity, because I just dont know what to do now.

>

[Guest guest]

Oh thank you for the information, I read about the mental exam deal

and this condition has certainly given me anxiety/depression issues

as I was ALWAYS a glass is half full kind of girl, this disease has

changed that - now I wish I could drink what is in that damn glass

1/2 full or 1/2 empty - ha!

I will be persistent, please let me know as you go through the

process how it goes - I dont really know what to say regarding how it

disables me that will sound best - are there any buzz words you used

that seem to have helped make them notice? ANY INPUT would be SO

appreciated - I am sure you are like me and cant afford to be denied

at this point.

Thanks again!

Steph

> >

> > Thank you for the input, I have gone in and printed the

information

> > to see if I may qualify but I think I am too fat (WHAT A JOKE!)

looks

> > like I need to be about 5 pounds lighter - I cannot imagine that -

to

> > me under a 100 lbs and shopping for kids clothes isn't normal! I

> > feel I stuck in a place between heaven and hell waiting for

someone

> > to decide which button to push! Before it is all over I will

> > probably qualify under the Mental Disorders classification - this

is

> > driving me nuts.

> >

> > I had SUCH a good attitude in the beginning, it has since faded,

> > especially recently.

> >

> > I feel bad for my friends and family they just dont know what to

do

> > and I dont know how to help them help me. Eating is one of the

most

> > wonderful things in life and for me I can never tell what will go

> > down and I am either flooded with suggestions or ignored. If I

never

> > have to eat mashed potatoes again it will be too soon. I know

you

> > all know how I feel, I just need to get as much information as I

can

> > to see if there is any suggestions on how to have a better

quality of

> > life as is or in the future.

> >

> > I will be in touch and appreciate your support.

> >

>

[Guest guest]

My heart goes out to you; there may be alternatives that work for you. Most people do not agree withmy outlook, however i am gradually getting better, so i do not say much. Try to keep your stress leveldown; i know this is easier said then done. There are many coping tips here, such as small bites, using hot water to wash things down. be sure your food is well chewed, and not eating after 6pm, probiotics help some too.Hynotherapy and accupuncture are slowly helping me. I no longer have spasms or vomiting and i stopped losing weight.. if you are interested i will be glad to give you the information of what helped me and what did not. I am not saying that this will help you. I am

not cured, but i can cope pretty well and hope to find the final combination.i take no supplements or medication; i have nothing to sell. I still come here because so many of the people are kind and caring. I hope you are doing better soon, Marg ...hanging by a thread after two surgeries...

I am 35 was diagnosed with Achalasia at 5 months pregnant (only

child), had a Heller Myotomy that same week with Toupet Fundo 8/2005

then a redo myotomy on 6/2006. I have had all types of dialations,

botox, you name it and I am STILL SUFFERING! I am between 25-30+-

pounds underweight (I fluctuated 5 pounds when I was "normal") and am

stuck at 98 pounds. I still have pain swallowing, I have the most

HORRIBLE dry heaving acid spitting chest wrenching attacks usually at

night even sleeping upright. I have lost my job, I am almost too

weak to take care of my one year old whom I adore, I look like crap,

my hair is dry and falling out, my skin is dry and ugly, I have no

energy, am always tired, anxious and beginning to think I am

depressed, I have a horrible self image now as I am all bones and

noone seems to have a solution for me - UGH UGH UGH!!! The funny

thing about it is that my "bloodwork" always comes back normal like I

am healthy, I dont know how, but with less that 2 cups of food a day

by body reads as healthy in labs - crazy! I know I am not, my body

is atrophying, I see it happening, no muscle, nothing!

Anyone else out there still suffering from Achalasia that can help me

cope? I am two steps from living in a cardboard box, does anyone

know if Achalasia and its horrible effects qualify you for

disabillity, because I just dont know what to do now.

[Guest guest]

Hi I AM SHAMECA.I know what you are talking about.Went down to 105 from 130 in less than a year, wasting muscles and all, looked like bones only , my skin had even become thin. thought I would never finish nursing school, function as a normal individual enjoy life with my condition but I have . Never did surgery. had numerous dilations lab works say I am very healthy as well. But one thing I realize is that the less you focus on the problem, the more relaxed you become, a little less stressed. food goes down easer. Determine within yourself that you are going to pass the worst, enjoy life to its max as you possible can and give back your love to those around you that still love you despite your health. ACHALASIA seems to stay but LIFE was made for living.Margaret <gezmorgan@...> wrote: My heart goes out to you; there may be alternatives that work for you. Most people do not agree withmy outlook, however i am gradually getting better, so i do not say much. Try to keep your stress leveldown; i know this is easier said then done. There are many coping tips here, such as small bites, using hot water to wash things down. be sure your food is well chewed, and not eating after 6pm, probiotics help some too.Hynotherapy and accupuncture are slowly helping me. I no

longer have spasms or vomiting and i stopped losing weight.. if you are interested i will be glad to give you the information of what helped me and what did not. I am not saying that this will help you. I am not cured, but i can cope pretty well and hope to find the final combination.i take no supplements or medication; i have nothing to sell. I still come here because so many of the people are kind and caring. I hope you are doing better soon, Marg ...hanging by a thread after two surgeries... I am 35 was diagnosed with Achalasia at 5 months pregnant (only child), had a Heller

Myotomy that same week with Toupet Fundo 8/2005 then a redo myotomy on 6/2006. I have had all types of dialations, botox, you name it and I am STILL SUFFERING! I am between 25-30+- pounds underweight (I fluctuated 5 pounds when I was "normal") and am stuck at 98 pounds. I still have pain swallowing, I have the most HORRIBLE dry heaving acid spitting chest wrenching attacks usually at night even sleeping upright. I have lost my job, I am almost too weak to take care of my one year old whom I adore, I look like crap, my hair is dry and falling out, my skin is dry and ugly, I have no energy, am always tired, anxious and beginning to think I am depressed, I have a horrible self image now as I am all bones and noone seems to have a solution for me - UGH UGH UGH!!! The funny thing about it is that my "bloodwork" always comes back normal like I am healthy, I dont know how, but with less that 2 cups of food a day by body

reads as healthy in labs - crazy! I know I am not, my body is atrophying, I see it happening, no muscle, nothing! Anyone else out there still suffering from Achalasia that can help me cope? I am two steps from living in a cardboard box, does anyone know if Achalasia and its horrible effects qualify you for disabillity, because I just dont know what to do now.

Don't be flakey. Get for Mobile and always stay connected to friends.

[Guest guest]

Hello, Shemeca.

Shameca wrote:

> ... But one thing I realize is that the less you focus on the

> problem, the more relaxed you become, a little less stressed. food

> goes down easer. Determine within yourself that you are going to pass

> the worst, enjoy life to its max as you possible can and give back

> your love to those around you that still love you despite your health.

> ACHALASIA seems to stay but LIFE was made for living.

I like your attitude and I try to be that way with many problems in

life. Sometimes though, one is not able to get better and help is needed

to not get worse. Also, we can be fooled into thinking that something we

are doing, even our attitude, is making things better when in fact what

seems better is actually things getting worse. One of the problems

people can have with achalasia is spasms or NCCPs. Often these will get

worse for some time and then get better. The getting better may be

because some of the nerves contributing to them have died. Likewise

regurgitation and choking which can be caused by faulty contractions

pushing up when peristalsis should be pushing down, can become better

when the nerves for peristalsis in that portion of the esophagus die off

enough to stop the contractions. Then without contractions the lower

esophagus is just a tubular bag waiting to be stretched out so you can

hold even more food in it before needing to regurgitate. So, you eat

more and more without regurgitating, while your esophagus stretches, and

you have fewer spasms so you think you are better and tell everyone you

have found a treatment they should try. Then again maybe you are better.

We are all different. What works for some may not work for others. I

went for twenty years doing nothing. Before my surgery I was still

eating whatever I wanted, meat, bread and vegetables and my esophagus

was not badly dilated. Others become worse than that in a very short

time. I didn't get by that well for so long because I was knowledgeable

and clever. I was ignorant but lucky. Like you though I did not let

achalasia stop me from enjoying my time with those around me. It was

however taking more and more energy to be " relaxed " about it. I didn't

realize how much effort I was putting into it until I decided to have

the surgery. What a difference to have that behind me.

notan

[Guest guest]

Hi Notan, The answer you gave Shameca could have been mine! I recognize myself and my thoughts in every single word you write (except for the part after the surgery, as you know). Isabellanotan ostrich <notan_ostrich@...> wrote: Hello, Shemeca.Shameca wrote:> ... But one thing I realize is that the less you focus on the > problem, the more relaxed you become, a little less stressed. food > goes down easer. Determine within

yourself that you are going to pass > the worst, enjoy life to its max as you possible can and give back > your love to those around you that still love you despite your health. > ACHALASIA seems to stay but LIFE was made for living.I like your attitude and I try to be that way with many problems in life. Sometimes though, one is not able to get better and help is needed to not get worse. Also, we can be fooled into thinking that something we are doing, even our attitude, is making things better when in fact what seems better is actually things getting worse. One of the problems people can have with achalasia is spasms or NCCPs. Often these will get worse for some time and then get better. The getting better may be because some of the nerves contributing to them have died. Likewise regurgitation and choking which can be caused by faulty contractions pushing up when peristalsis should be pushing down, can

become better when the nerves for peristalsis in that portion of the esophagus die off enough to stop the contractions. Then without contractions the lower esophagus is just a tubular bag waiting to be stretched out so you can hold even more food in it before needing to regurgitate. So, you eat more and more without regurgitating, while your esophagus stretches, and you have fewer spasms so you think you are better and tell everyone you have found a treatment they should try. Then again maybe you are better. We are all different. What works for some may not work for others. I went for twenty years doing nothing. Before my surgery I was still eating whatever I wanted, meat, bread and vegetables and my esophagus was not badly dilated. Others become worse than that in a very short time. I didn't get by that well for so long because I was knowledgeable and clever. I was ignorant but lucky. Like you though I did not let

achalasia stop me from enjoying my time with those around me. It was however taking more and more energy to be "relaxed" about it. I didn't realize how much effort I was putting into it until I decided to have the surgery. What a difference to have that behind me.notan

Sucker-punch spam with award-winning protection. Try the free Beta.

[Guest guest]

Ditto from me Notan!

Just reading your last statement: " I didn't realize how much effort I

was putting into it until I decided to have the surgery. What a

difference to have that behind me. "

Although I am facing the esophagectomy in <GULP> just over a week,

that same statement applies to me. I am one of the ones that

functioned as almost normal for years....then found out after a

sudden, very serious case of aspiration pneumonia that things were

really, really bad. Now two different, very well known surgeons have

told me esophagectomy, and it's time to get it over with. I feel like

it has consumed my life....while I have always enjoyed everything I

do, and being with my kids....it's still there, in the back of my

head, looming over me. I think about if and when I'll get sick

again....my husband jumps everytime I cough at night, and I just think

about it all the time. Oh wait, and feeling like crap all the time

helps too.

It's amazing the mental energy this disease can take out of you, even

when you think things are going ok....it's still there. I am 33 and

have way too much stuff to do and look forward to to not do this now

and get it behind me!!

in NY

Re: ...hanging by a thread after two surgeries...

achalasia

> Hi Notan,

>

> The answer you gave Shameca could have been mine! I recognize

> myself and my thoughts in every single word you write (except for

> the part after the surgery, as you know).

>

> Isabella

>

> notan ostrich <notan_ostrich@...> wrote:

> Hello, Shemeca.

>

> Shameca wrote:

> > ... But one thing I realize is that the less you focus on the

> > problem, the more relaxed you become, a little less stressed.

> food

> > goes down easer. Determine within yourself that you are going to

> pass

> > the worst, enjoy life to its max as you possible can and give

> back

> > your love to those around you that still love you despite your

> health.

> > ACHALASIA seems to stay but LIFE was made for living.

>

> I like your attitude and I try to be that way with many problems

> in

> life. Sometimes though, one is not able to get better and help is

> needed

> to not get worse. Also, we can be fooled into thinking that

> something we

> are doing, even our attitude, is making things better when in fact

> what

> seems better is actually things getting worse. One of the problems

> people can have with achalasia is spasms or NCCPs. Often these

> will get

> worse for some time and then get better. The getting better may be

> because some of the nerves contributing to them have died.

> Likewise

> regurgitation and choking which can be caused by faulty

> contractions

> pushing up when peristalsis should be pushing down, can become

> better

> when the nerves for peristalsis in that portion of the esophagus

> die off

> enough to stop the contractions. Then without contractions the

> lower

> esophagus is just a tubular bag waiting to be stretched out so you

> can

> hold even more food in it before needing to regurgitate. So, you

> eat

> more and more without regurgitating, while your esophagus

> stretches, and

> you have fewer spasms so you think you are better and tell

> everyone you

> have found a treatment they should try. Then again maybe you are

> better.

> We are all different. What works for some may not work for others.

> I

> went for twenty years doing nothing. Before my surgery I was still

> eating whatever I wanted, meat, bread and vegetables and my

> esophagus

> was not badly dilated. Others become worse than that in a very

> short

> time. I didn't get by that well for so long because I was

> knowledgeable

> and clever. I was ignorant but lucky. Like you though I did not

> let

> achalasia stop me from enjoying my time with those around me. It

> was

> however taking more and more energy to be " relaxed " about it. I

> didn't

> realize how much effort I was putting into it until I decided to

> have

> the surgery. What a difference to have that behind me.

>

> notan

>

>

>

>

>

>

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

> Sucker-punch spam with award-winning protection.

> Try the free Beta.

[Guest guest]

It is a horrible disease, and so mysterious, it is driving me, wait

it has driven me crazy for sure. If you are not proactive and find

your own doctors/surgeons based on some really good research you just

cant rely on someone saying they are experienced or the best in the

area or what have you, I learned the hard way.

> > > ... But one thing I realize is that the less you focus on the

> > > problem, the more relaxed you become, a little less stressed.

> > food

> > > goes down easer. Determine within yourself that you are going

to

> > pass

> > > the worst, enjoy life to its max as you possible can and give

> > back

> > > your love to those around you that still love you despite your

> > health.

> > > ACHALASIA seems to stay but LIFE was made for living.

> >

> > I like your attitude and I try to be that way with many problems

> > in

> > life. Sometimes though, one is not able to get better and help is

> > needed

> > to not get worse. Also, we can be fooled into thinking that

> > something we

> > are doing, even our attitude, is making things better when in

fact

> > what

> > seems better is actually things getting worse. One of the

problems

> > people can have with achalasia is spasms or NCCPs. Often these

> > will get

> > worse for some time and then get better. The getting better may

be

> > because some of the nerves contributing to them have died.

> > Likewise

> > regurgitation and choking which can be caused by faulty

> > contractions

> > pushing up when peristalsis should be pushing down, can become

> > better

> > when the nerves for peristalsis in that portion of the esophagus

> > die off

> > enough to stop the contractions. Then without contractions the

> > lower

> > esophagus is just a tubular bag waiting to be stretched out so

you

> > can

> > hold even more food in it before needing to regurgitate. So, you

> > eat

> > more and more without regurgitating, while your esophagus

> > stretches, and

> > you have fewer spasms so you think you are better and tell

> > everyone you

> > have found a treatment they should try. Then again maybe you are

> > better.

> > We are all different. What works for some may not work for

others.

> > I

> > went for twenty years doing nothing. Before my surgery I was

still

> > eating whatever I wanted, meat, bread and vegetables and my

> > esophagus

> > was not badly dilated. Others become worse than that in a very

> > short

> > time. I didn't get by that well for so long because I was

> > knowledgeable

> > and clever. I was ignorant but lucky. Like you though I did not

> > let

> > achalasia stop me from enjoying my time with those around me. It

> > was

> > however taking more and more energy to be " relaxed " about it. I

> > didn't

> > realize how much effort I was putting into it until I decided to

> > have

> > the surgery. What a difference to have that behind me.

> >

> > notan

> >

> >

> >

> >

> >

> >

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

> > Sucker-punch spam with award-winning protection.

> > Try the free Beta.

>

[Guest guest]

I welcome and appreciate any and all advice!!!!

>

> My heart goes out to you; there may be alternatives that work for

you. Most people do not agree with

> my outlook, however i am gradually getting better, so i do not say

much. Try to keep your stress level

> down; i know this is easier said then done. There are many coping

tips here, such as small bites, using

> hot water to wash things down. be sure your food is well chewed,

and not eating after 6pm, probiotics help some too.

>

> Hynotherapy and accupuncture are slowly helping me. I no longer

have spasms or vomiting and i stopped losing weight..

> if you are interested i will be glad to give you the information of

what helped me and what did not.

> I am not saying that this will help you. I am not cured, but i can

cope pretty well and hope to find the final combination.

> i take no supplements or medication; i have nothing to sell. I

still come here because so many of the people

> are kind and caring. I hope you are doing better soon, Marg

>

> ...hanging by a thread after two surgeries...

>

>

>

>

>

>

>

>

>

>

>

>

>

> I am 35 was diagnosed with Achalasia at 5 months

pregnant (only

>

> child), had a Heller Myotomy that same week with Toupet Fundo

8/2005

>

> then a redo myotomy on 6/2006. I have had all types of dialations,

>

> botox, you name it and I am STILL SUFFERING! I am between 25-30+-

>

> pounds underweight (I fluctuated 5 pounds when I was " normal " ) and

am

>

> stuck at 98 pounds. I still have pain swallowing, I have the most

>

> HORRIBLE dry heaving acid spitting chest wrenching attacks usually

at

>

> night even sleeping upright. I have lost my job, I am almost too

>

> weak to take care of my one year old whom I adore, I look like

crap,

>

> my hair is dry and falling out, my skin is dry and ugly, I have no

>

> energy, am always tired, anxious and beginning to think I am

>

> depressed, I have a horrible self image now as I am all bones and

>

> noone seems to have a solution for me - UGH UGH UGH!!! The funny

>

> thing about it is that my " bloodwork " always comes back normal like

I

>

> am healthy, I dont know how, but with less that 2 cups of food a

day

>

> by body reads as healthy in labs - crazy! I know I am not, my body

>

> is atrophying, I see it happening, no muscle, nothing!

>

>

>

> Anyone else out there still suffering from Achalasia that can help

me

>

> cope? I am two steps from living in a cardboard box, does anyone

>

> know if Achalasia and its horrible effects qualify you for

>

> disabillity, because I just dont know what to do now.

>

>

>

>

>

>

>

>

>

>

>

>

>

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