Re: Emotional Aspects

[Guest guest]

Dear ,

 

My heart goes out to you because I and many others here know what you are going

through and understand that it is not only physical, but that it impinges on the

whole of your life because eating is such a basic necessity.

 

I want you to know that I am writing from the " other side " of this problem. A

few years ago I had a Hellers Myotomy with a Nissen wrap (there are different

types) and it has improved my life so much that I have to remember that I have

Achalasia, as opposed to thinking about little else. It is so easy to feel sorry

for yourself. I can remember occasions when I chucked up into the toilet then

sat on the bathroom floor and wept from despair and fear. I suppose that there

were times when I thought that I would die, but that was down to inaction and

ignorance on my part.

 

Please believe that you can be helped. I eat meals at home with pleasure, and a

lot of water! LOL. I also go out for lunch in cafes and for a meal in a

restaurant occasionally. I feel normal and am a healthy weight and in good

general health.

 

Of course, nobody wants to go into hospital and have surgery. For me it was the

first time ever and I was quite frightened. At the same time, I was actually

looking forward to it, looking forward to being able to eat again and looking

forward to knowing that I had done this for myself- saught help and gone through

the hassle. I should have done it much sooner.

 

So, be positive. Believe in the future. The people here can talk you through

every step.

 

I send you my love,

From Ann in England.

From: cclee271828 <chrissie.c.l@...>

Subject: Emotional Aspects

achalasia

Date: Saturday, 23 April, 2011, 4:01

 

Hi,

So the medical side of my story is pretty simple. Starting having symptoms 1.5

years ago, diagnosed with acid reflux for 6 months to no avail, diagnosed with

Achalasia in January, have a meeting with Dr. DeMeester at USC coming up to

discuss treatment. I have some sort of pain most times I eat and more intense,

debilitating stabbing sensations once day or so. For the last few months I have

also been regurgitating food in the more painful situations. I've been coughing

at night since last summer, and now often wake up regurgitating food. Through a

great deal of determination, the only weight I've lost has been through running

and a transference from fat to muscle.

So right now my case is straight forward. By the book. It's all quantified. But

somehow the coherent logic of it can't seem assuage the fear and strife of it. I

should be able to reason myself out of the fear by understanding everything

that's going on. I even feel comfortable talking about it to others now, but I

still feel isolated by it, especially during meals.

Food is more than just nutrients in our culture. It's a way to bond with each

other. To take time out from stress and work to talk and relax, but that's been

taken away. It's gone from a time to relax to a self inflicted torture session.

And while the pain stops after meals, it just leaves me emotionally drained and

tired. Most days I handle it, but eventually the emotional toll of forcing

myself through pain catches up. I just have to withdraw from the pain and the

world and pretend it doesn't exist in some TV show or novel. And the difficulty

sleeping soundly leaves me tired with headaches a great deal of the time.

Right now I'm a sophomore at Caltech, which if you don't know is home of one of

the most difficult science programs around. People here get burned out even

being perfectly healthy. And while I still love what I'm doing and know that

this is the best place for me, I feel like I don't have enough strength to do

all that I need to do and deal with the pain. I need to be at the top of my

game, but I'm just not. I need to go beyond just moving through the problem sets

to really learning this stuff like the back of my hand, but I'm too drained.

And all the things about cutting more painful foods from my diet? I use that and

it helps, but everything's painful. Sometimes my most painful occasions are just

with water. The only way I can eat is keeping up hope that maybe this time it

will be easier. Imagining that this time it won't hurt. Sometimes when I'm

burned out I claim I'll just stopping eating painful things = stop eating, but

that doesn't work. I have to eat.

I try to not eat before going to sleep, but dinner time is six, and bedtime is

often determined by either when my problem set gets done or when my brain shuts

down from exhaustion. I don't know when to cut off food intake, since I don't

plan when I'm going to fall asleep. The best way to stay awake is food. What

should I do when I become ravishingly hungry at 2 AM?

Sorry about the long post, but it feels good to write this stuff to people who

have a deeper appreciation for what's going on. Does anyone have advice for

keeping up emotional strength?

Two more short questions:

How should I handle meals when people notice I've barely touched my food, or I

have to withdraw inward because of the pain?

Also, how important is it to have a family member/ parent at any medical tests

or meetings instead of a college friend?

Lee

[Guest guest]

PS Don't try to hide it because you can't. Explain to people- " I have a medical

disorder in my oesophagus. I am having tests for it and meanwhile I can't eat

properly. So please bear with me and frankly, the best you can do for me is

ignore me in that respect. I can handle things calmly when people don't get

involved " Or words to that effect.

 

I went to my consultations alone and did not find that a problem. It was

afterwards that I needed a cuddle and a bit of understanding.

From: cclee271828 <chrissie.c.l@...>

Subject: Emotional Aspects

achalasia

Date: Saturday, 23 April, 2011, 4:01

 

Hi,

So the medical side of my story is pretty simple. Starting having symptoms 1.5

years ago, diagnosed with acid reflux for 6 months to no avail, diagnosed with

Achalasia in January, have a meeting with Dr. DeMeester at USC coming up to

discuss treatment. I have some sort of pain most times I eat and more intense,

debilitating stabbing sensations once day or so. For the last few months I have

also been regurgitating food in the more painful situations. I've been coughing

at night since last summer, and now often wake up regurgitating food. Through a

great deal of determination, the only weight I've lost has been through running

and a transference from fat to muscle.

So right now my case is straight forward. By the book. It's all quantified. But

somehow the coherent logic of it can't seem assuage the fear and strife of it. I

should be able to reason myself out of the fear by understanding everything

that's going on. I even feel comfortable talking about it to others now, but I

still feel isolated by it, especially during meals.

Food is more than just nutrients in our culture. It's a way to bond with each

other. To take time out from stress and work to talk and relax, but that's been

taken away. It's gone from a time to relax to a self inflicted torture session.

And while the pain stops after meals, it just leaves me emotionally drained and

tired. Most days I handle it, but eventually the emotional toll of forcing

myself through pain catches up. I just have to withdraw from the pain and the

world and pretend it doesn't exist in some TV show or novel. And the difficulty

sleeping soundly leaves me tired with headaches a great deal of the time.

Right now I'm a sophomore at Caltech, which if you don't know is home of one of

the most difficult science programs around. People here get burned out even

being perfectly healthy. And while I still love what I'm doing and know that

this is the best place for me, I feel like I don't have enough strength to do

all that I need to do and deal with the pain. I need to be at the top of my

game, but I'm just not. I need to go beyond just moving through the problem sets

to really learning this stuff like the back of my hand, but I'm too drained.

And all the things about cutting more painful foods from my diet? I use that and

it helps, but everything's painful. Sometimes my most painful occasions are just

with water. The only way I can eat is keeping up hope that maybe this time it

will be easier. Imagining that this time it won't hurt. Sometimes when I'm

burned out I claim I'll just stopping eating painful things = stop eating, but

that doesn't work. I have to eat.

I try to not eat before going to sleep, but dinner time is six, and bedtime is

often determined by either when my problem set gets done or when my brain shuts

down from exhaustion. I don't know when to cut off food intake, since I don't

plan when I'm going to fall asleep. The best way to stay awake is food. What

should I do when I become ravishingly hungry at 2 AM?

Sorry about the long post, but it feels good to write this stuff to people who

have a deeper appreciation for what's going on. Does anyone have advice for

keeping up emotional strength?

Two more short questions:

How should I handle meals when people notice I've barely touched my food, or I

have to withdraw inward because of the pain?

Also, how important is it to have a family member/ parent at any medical tests

or meetings instead of a college friend?

Lee

[Guest guest]

,

Do you sleep with the head of your bed elevated? I don't know if you're in

a dorm, but sometimes dorm beds have adjustable height and it's pretty easy

to adjust the head of the bed in a higher slot than the foot. A few books

or something can also be used to elevate the head of the bed.

Foods with more oil/fat and protein content will keep you feeling full

longer, but starchy sugary foods in the evening might contribute to waking

up feeling hungry.

I think you're definitely on the right track by meeting with Dr. DeMeester

at USC. Before surgery, some people get a little temporary relief from

calcium channel blockers such as nifedipine or nitrates such as isosorbide

dinitrate or nitroglycerin before meals.

You might benefit from making an appointment to talk with a counselor at

Caltech. Exercising is also good for emotional health and it sounds as if

you're doing well with that. You might also want to connect with peers who

have achalasia in person. There's a Facebook group at

http://www.facebook.com/#!/group.php?gid=77953468660 but I don't know how

active it is.

As a parent of a college student with achalasia, I might be biased but

personally I feel that it's better to have a parent go along to doctor

appointments. They will still be in your life in five or ten years while

the college friend may or may not, and they probably also have more

experience with hospitals and doctors just because of their age so they

might ask useful questions. Also, if you're allowed to have someone stay

overnight in your hospital room (e.g. on a reclining chair) when you have

the surgery, it might have to be a family member. Nurses are busy and it

can be good to have someone right there when you're woozy that first night.

Best wishes,

in PA

--------------------------------------------------

From: " cclee271828 " <chrissie.c.l@...>

Sent: Friday, April 22, 2011 11:01 PM

<achalasia >

Subject: Emotional Aspects

> Hi,

> So the medical side of my story is pretty simple. Starting having

> symptoms 1.5 years ago, diagnosed with acid reflux for 6 months to no

> avail, diagnosed with Achalasia in January, have a meeting with Dr.

> DeMeester at USC coming up to discuss treatment. I have some sort of pain

> most times I eat and more intense, debilitating stabbing sensations once

> day or so. For the last few months I have also been regurgitating food in

> the more painful situations. I've been coughing at night since last

> summer, and now often wake up regurgitating food. Through a great deal of

> determination, the only weight I've lost has been through running and a

> transference from fat to muscle.

>

> So right now my case is straight forward. By the book. It's all

> quantified. But somehow the coherent logic of it can't seem assuage the

> fear and strife of it. I should be able to reason myself out of the fear

> by understanding everything that's going on. I even feel comfortable

> talking about it to others now, but I still feel isolated by it,

> especially during meals.

>

> Food is more than just nutrients in our culture. It's a way to bond with

> each other. To take time out from stress and work to talk and relax, but

> that's been taken away. It's gone from a time to relax to a self

> inflicted torture session. And while the pain stops after meals, it just

> leaves me emotionally drained and tired. Most days I handle it, but

> eventually the emotional toll of forcing myself through pain catches up. I

> just have to withdraw from the pain and the world and pretend it doesn't

> exist in some TV show or novel. And the difficulty sleeping soundly leaves

> me tired with headaches a great deal of the time.

>

> Right now I'm a sophomore at Caltech, which if you don't know is home of

> one of the most difficult science programs around. People here get burned

> out even being perfectly healthy. And while I still love what I'm doing

> and know that this is the best place for me, I feel like I don't have

> enough strength to do all that I need to do and deal with the pain. I

> need to be at the top of my game, but I'm just not. I need to go beyond

> just moving through the problem sets to really learning this stuff like

> the back of my hand, but I'm too drained.

>

> And all the things about cutting more painful foods from my diet? I use

> that and it helps, but everything's painful. Sometimes my most painful

> occasions are just with water. The only way I can eat is keeping up hope

> that maybe this time it will be easier. Imagining that this time it won't

> hurt. Sometimes when I'm burned out I claim I'll just stopping eating

> painful things = stop eating, but that doesn't work. I have to eat.

> I try to not eat before going to sleep, but dinner time is six, and

> bedtime is often determined by either when my problem set gets done or

> when my brain shuts down from exhaustion. I don't know when to cut off

> food intake, since I don't plan when I'm going to fall asleep. The best

> way to stay awake is food. What should I do when I become ravishingly

> hungry at 2 AM?

>

> Sorry about the long post, but it feels good to write this stuff to people

> who have a deeper appreciation for what's going on. Does anyone have

> advice for keeping up emotional strength?

> Two more short questions:

> How should I handle meals when people notice I've barely touched my food,

> or I have to withdraw inward because of the pain?

> Also, how important is it to have a family member/ parent at any medical

> tests or meetings instead of a college friend?

>

> Lee

>

>

>

[Guest guest]

Hi

I was referred to Dr Demeester 3 years ago by my GI after a manometry test. I

never went!Not sure if it is father or son.

I decided at my age would be better to find out how to do it on my own. After

much research found that BUTTER and Magnesium 250 mg twice a day seem to work

for me, as well as Hot coffee, Coke. The Magnesium will also loosen the bowels a

bit.

Butter loosens the LES and relaxes it and make food slip down.

I only get spasms when food is in the e, so butter on an English toasted well

and a COLD COKE makes it pass.

Today I am so much better than 3 years ago, now at 80 painting the outside of my

house. I clear out the e every night before bed with a Ensure plus and a pint of

cold water. Activity has really helped the food to pass.

I was on Nexium at first 3 years, it causes a BIG stomach imbalance. I got off

it on my own, now I can digest food. Mine started out as GERD in the middle of

the night, so now I sleep on an elevated bed.

Yes once in awhile I regurgiate a bit, but only when I eat some thing BAD.

If you look through the posts for the last year or so, having an operation is a

temporary solution, it does seem to help some people, but then more and more

have second operatons and then the e removed.

It is a shame that it occurs when you are in school, I feel so sorry. I am

retired so I have the capabality to try different approaches.

It is your decision what to do ,BUT study all the post for the last year.

Ray CA OC 80 Mission Viejo

>

> Hi,

> So the medical side of my story is pretty simple. Starting having symptoms

1.5 years ago, diagnosed with acid reflux for 6 months to no avail, diagnosed

with Achalasia in January, have a meeting with Dr. DeMeester at USC coming up to

discuss treatment. I have some sort of pain most times I eat and more intense,

debilitating stabbing sensations once day or so. For the last few months I have

also been regurgitating food in the more painful situations. I've been coughing

at night since last summer, and now often wake up regurgitating food. Through a

great deal of determination, the only weight I've lost has been through running

and a transference from fat to muscle.

>

> So right now my case is straight forward. By the book. It's all quantified.

But somehow the coherent logic of it can't seem assuage the fear and strife of

it. I should be able to reason myself out of the fear by understanding

everything that's going on. I even feel comfortable talking about it to others

now, but I still feel isolated by it, especially during meals.

>

> Food is more than just nutrients in our culture. It's a way to bond with each

other. To take time out from stress and work to talk and relax, but that's been

taken away. It's gone from a time to relax to a self inflicted torture session.

And while the pain stops after meals, it just leaves me emotionally drained and

tired. Most days I handle it, but eventually the emotional toll of forcing

myself through pain catches up. I just have to withdraw from the pain and the

world and pretend it doesn't exist in some TV show or novel. And the difficulty

sleeping soundly leaves me tired with headaches a great deal of the time.

>

> Right now I'm a sophomore at Caltech, which if you don't know is home of one

of the most difficult science programs around. People here get burned out even

being perfectly healthy. And while I still love what I'm doing and know that

this is the best place for me, I feel like I don't have enough strength to do

all that I need to do and deal with the pain. I need to be at the top of my

game, but I'm just not. I need to go beyond just moving through the problem

sets to really learning this stuff like the back of my hand, but I'm too

drained.

>

> And all the things about cutting more painful foods from my diet? I use that

and it helps, but everything's painful. Sometimes my most painful occasions are

just with water. The only way I can eat is keeping up hope that maybe this time

it will be easier. Imagining that this time it won't hurt. Sometimes when I'm

burned out I claim I'll just stopping eating painful things = stop eating, but

that doesn't work. I have to eat.

> I try to not eat before going to sleep, but dinner time is six, and bedtime is

often determined by either when my problem set gets done or when my brain shuts

down from exhaustion. I don't know when to cut off food intake, since I don't

plan when I'm going to fall asleep. The best way to stay awake is food. What

should I do when I become ravishingly hungry at 2 AM?

>

> Sorry about the long post, but it feels good to write this stuff to people who

have a deeper appreciation for what's going on. Does anyone have advice for

keeping up emotional strength?

> Two more short questions:

> How should I handle meals when people notice I've barely touched my food, or I

have to withdraw inward because of the pain?

> Also, how important is it to have a family member/ parent at any medical tests

or meetings instead of a college friend?

>

> Lee

>

[Guest guest]

Dear ,

I'm so sorry you are having these problems at such an early age.

It gets really OLD telling people you can't eat. Many of us avoid any social

situations with food.

I found is slightly helpful to say I had the opposite of GERD if someone asked.

They seem to understand that and the conversation drops.

Many many people here have had very successful surgeries with no redos. They

may never come back here and don't post often.

My surgery was about 6 years ago. I'm eating meatballs, and will be eating

cinnamon rolls in about an hour for dessert. I drink a little water at the end

of my meals and I can eat everything. There are many that have had similar

success. Before surgery I couldn't drink water and at my worst was losing about

half a pound a day. My surgery was at Cedars w/ Dr. Fuller. Others have gone

there, also Dr. Maish at UCLA and the DeMeester's at USC. In general Loma

doesn't get good reviews, and UCI seems not to be in the running at all. Any of

the other regional hospitals around here usually refer to USC, UCLA or Cedars.

Many of us suffer from some depression with achalasia. Eating is part of our

culture and it is isolating to not be able to eat with your friends. There are

quite a few of us in SoCal if you ever want to meet any of us. Just let us know!

Sandy

>

> Hi,

> So the medical side of my story is pretty simple. Starting having symptoms

1.5 years ago, diagnosed with acid reflux for 6 months to no avail, diagnosed

with Achalasia in January, have a meeting with Dr. DeMeester at USC coming up to

discuss treatment. I have some sort of pain most times I eat and more intense,

debilitating stabbing sensations once day or so. For the last few months I have

also been regurgitating food in the more painful situations. I've been coughing

at night since last summer, and now often wake up regurgitating food. Through a

great deal of determination, the only weight I've lost has been through running

and a transference from fat to muscle.

>

> So right now my case is straight forward. By the book. It's all quantified.

But somehow the coherent logic of it can't seem assuage the fear and strife of

it. I should be able to reason myself out of the fear by understanding

everything that's going on. I even feel comfortable talking about it to others

now, but I still feel isolated by it, especially during meals.

>

> Food is more than just nutrients in our culture. It's a way to bond with each

other. To take time out from stress and work to talk and relax, but that's been

taken away. It's gone from a time to relax to a self inflicted torture session.

And while the pain stops after meals, it just leaves me emotionally drained and

tired. Most days I handle it, but eventually the emotional toll of forcing

myself through pain catches up. I just have to withdraw from the pain and the

world and pretend it doesn't exist in some TV show or novel. And the difficulty

sleeping soundly leaves me tired with headaches a great deal of the time.

>

> Right now I'm a sophomore at Caltech, which if you don't know is home of one

of the most difficult science programs around. People here get burned out even

being perfectly healthy. And while I still love what I'm doing and know that

this is the best place for me, I feel like I don't have enough strength to do

all that I need to do and deal with the pain. I need to be at the top of my

game, but I'm just not. I need to go beyond just moving through the problem

sets to really learning this stuff like the back of my hand, but I'm too

drained.

>

> And all the things about cutting more painful foods from my diet? I use that

and it helps, but everything's painful. Sometimes my most painful occasions are

just with water. The only way I can eat is keeping up hope that maybe this time

it will be easier. Imagining that this time it won't hurt. Sometimes when I'm

burned out I claim I'll just stopping eating painful things = stop eating, but

that doesn't work. I have to eat.

> I try to not eat before going to sleep, but dinner time is six, and bedtime is

often determined by either when my problem set gets done or when my brain shuts

down from exhaustion. I don't know when to cut off food intake, since I don't

plan when I'm going to fall asleep. The best way to stay awake is food. What

should I do when I become ravishingly hungry at 2 AM?

>

> Sorry about the long post, but it feels good to write this stuff to people who

have a deeper appreciation for what's going on. Does anyone have advice for

keeping up emotional strength?

> Two more short questions:

> How should I handle meals when people notice I've barely touched my food, or I

have to withdraw inward because of the pain?

> Also, how important is it to have a family member/ parent at any medical tests

or meetings instead of a college friend?

>

> Lee

>

[Guest guest]

>

...... have a meeting with Dr. DeMeester at USC coming up to discuss

treatment. ....

Hi, ,

I'm sorry about your suffering with achalasia. You are doing the right

thing by meeting with one of the most qualified medical people in

southern California. I was diagnosed with achalasia in 2007 and met with

Dr. Steve DeMeester at USC in early 2008. He has a wealth of knowledge

about how troubling achalasia is in our lives. I found him to be an

excellent communicator and a caring, compassionate doctor with just the

help and advice that I needed.

Due to the fact that I was 65 years old at the time and am a female, I

was a good candidate for a pneumatic dilatation, which was done by a

gastroenterologist recommended by Dr. DeMeester at USC. Because you are

much younger than I am, he will have helpful and smart advice for you at

your age and in your current situation in college. I am confident that

Dr. DeMeester is trustworthy. You will feel much better, I think, after

your upcoming meeting with him. In the meantime, you are welcome to

contact me via email or on this site.

........> Also, how important is it to have a family member/ parent at

any medical tests or meetings instead of a college friend?......

I found that having a family member with me at the meetings with Dr.

DeMeester to be very helpful. My husband took some notes [because

medical vocabulary can be new / confusing] and clarified my thinking

after the meeting. Even better, he viewed the CD with Dr. DeMeester and

me after the esophagram. We together watched the barium bouncing around

in my esophagus, so now my husband knows that my condition is real and

understands what's happening when I eat.

I'm sending you all good wishes....please contact us anytime on this

website. Ask any questions. Hundreds of us are reading your messages and

are here to support you.

Warm regards,

Love in San Diego

[Guest guest]

Hi , I totally understand and relate to the emotional issues you

describe. It can be tortuous agreeing to a meal with others. I have no answers

for how to deal with the questions when people notice I havn't eaten much - I

end up withdrawing and not seeing anyone for ages. I am getting better at

refusing invites unless I know the friends very well. It definately helps to be

comfortable with people who are sympathetic and won't make a big deal.

It takes a lot of energy to deal with the difficulty of eating and I find that

sometimes I manage and other times I just run out of that energy. It is really

tough. With the help and support of some good friends and my brilliant husband I

get by but it is hard work. Finding this group has helped so much to read other

peoples stories and discover that I am no-longer alone which is how I felt until

finding it.

Be kind to yourself and each morning start with a new day. don't beat yourself

up, this condition is tough. I have suffered with depression in the past and so

have learned to take each day at a time. A cliche but it really helps. All the

best to you. Kay

> >

> > Hi,

> > So the medical side of my story is pretty simple. Starting having symptoms

1.5 years ago, diagnosed with acid reflux for 6 months to no avail, diagnosed

with Achalasia in January, have a meeting with Dr. DeMeester at USC coming up to

discuss treatment. I have some sort of pain most times I eat and more intense,

debilitating stabbing sensations once day or so. For the last few months I have

also been regurgitating food in the more painful situations. I've been coughing

at night since last summer, and now often wake up regurgitating food. Through a

great deal of determination, the only weight I've lost has been through running

and a transference from fat to muscle.

> >

> > So right now my case is straight forward. By the book. It's all quantified.

But somehow the coherent logic of it can't seem assuage the fear and strife of

it. I should be able to reason myself out of the fear by understanding

everything that's going on. I even feel comfortable talking about it to others

now, but I still feel isolated by it, especially during meals.

> >

> > Food is more than just nutrients in our culture. It's a way to bond with

each other. To take time out from stress and work to talk and relax, but that's

been taken away. It's gone from a time to relax to a self inflicted torture

session. And while the pain stops after meals, it just leaves me emotionally

drained and tired. Most days I handle it, but eventually the emotional toll of

forcing myself through pain catches up. I just have to withdraw from the pain

and the world and pretend it doesn't exist in some TV show or novel. And the

difficulty sleeping soundly leaves me tired with headaches a great deal of the

time.

> >

> > Right now I'm a sophomore at Caltech, which if you don't know is home of

one of the most difficult science programs around. People here get burned out

even being perfectly healthy. And while I still love what I'm doing and know

that this is the best place for me, I feel like I don't have enough strength to

do all that I need to do and deal with the pain. I need to be at the top of my

game, but I'm just not. I need to go beyond just moving through the problem

sets to really learning this stuff like the back of my hand, but I'm too

drained.

> >

> > And all the things about cutting more painful foods from my diet? I use

that and it helps, but everything's painful. Sometimes my most painful

occasions are just with water. The only way I can eat is keeping up hope that

maybe this time it will be easier. Imagining that this time it won't hurt.

Sometimes when I'm burned out I claim I'll just stopping eating painful things =

stop eating, but that doesn't work. I have to eat.

> > I try to not eat before going to sleep, but dinner time is six, and bedtime

is often determined by either when my problem set gets done or when my brain

shuts down from exhaustion. I don't know when to cut off food intake, since I

don't plan when I'm going to fall asleep. The best way to stay awake is food.

What should I do when I become ravishingly hungry at 2 AM?

> >

> > Sorry about the long post, but it feels good to write this stuff to people

who have a deeper appreciation for what's going on. Does anyone have advice for

keeping up emotional strength?

> > Two more short questions:

> > How should I handle meals when people notice I've barely touched my food, or

I have to withdraw inward because of the pain?

> > Also, how important is it to have a family member/ parent at any medical

tests or meetings instead of a college friend?

> >

> > Lee

> >

>

[Guest guest]

I think you learn what to order in a restaurant and always order hot tea--it

helps digestion--It works better for me if no one knows-I don't want people

watching what I eat--the anxiety for me now is that I'm afraid to

travel--especially internationally--I'm afraid that I will choke, need an

endoscopy and will not be able to get one--is anyone else afraid to

travel--thanks, from Boston

________________________________

From: Kay Davies <kayf.davies@...>

achalasia

Sent: Mon, April 25, 2011 3:38:48 PM

Subject: Re: Emotional Aspects

 

Hi , I totally understand and relate to the emotional issues you

describe. It can be tortuous agreeing to a meal with others. I have no answers

for how to deal with the questions when people notice I havn't eaten much - I

end up withdrawing and not seeing anyone for ages. I am getting better at

refusing invites unless I know the friends very well. It definately helps to be

comfortable with people who are sympathetic and won't make a big deal.

It takes a lot of energy to deal with the difficulty of eating and I find that

sometimes I manage and other times I just run out of that energy. It is really

tough. With the help and support of some good friends and my brilliant husband I

get by but it is hard work. Finding this group has helped so much to read other

peoples stories and discover that I am no-longer alone which is how I felt until

finding it.

Be kind to yourself and each morning start with a new day. don't beat yourself

up, this condition is tough. I have suffered with depression in the past and so

have learned to take each day at a time. A cliche but it really helps. All the

best to you. Kay

> >

> > Hi,

> > So the medical side of my story is pretty simple. Starting having symptoms

>1.5 years ago, diagnosed with acid reflux for 6 months to no avail, diagnosed

>with Achalasia in January, have a meeting with Dr. DeMeester at USC coming up

to

>discuss treatment. I have some sort of pain most times I eat and more intense,

>debilitating stabbing sensations once day or so. For the last few months I have

>also been regurgitating food in the more painful situations. I've been coughing

>at night since last summer, and now often wake up regurgitating food. Through a

>great deal of determination, the only weight I've lost has been through running

>and a transference from fat to muscle.

>

> >

> > So right now my case is straight forward. By the book. It's all quantified.

>But somehow the coherent logic of it can't seem assuage the fear and strife of

>it. I should be able to reason myself out of the fear by understanding

>everything that's going on. I even feel comfortable talking about it to others

>now, but I still feel isolated by it, especially during meals.

>

> >

> > Food is more than just nutrients in our culture. It's a way to bond with

each

>other. To take time out from stress and work to talk and relax, but that's been

>taken away. It's gone from a time to relax to a self inflicted torture session.

>And while the pain stops after meals, it just leaves me emotionally drained and

>tired. Most days I handle it, but eventually the emotional toll of forcing

>myself through pain catches up. I just have to withdraw from the pain and the

>world and pretend it doesn't exist in some TV show or novel. And the difficulty

>sleeping soundly leaves me tired with headaches a great deal of the time.

> >

> > Right now I'm a sophomore at Caltech, which if you don't know is home of one

>of the most difficult science programs around. People here get burned out even

>being perfectly healthy. And while I still love what I'm doing and know that

>this is the best place for me, I feel like I don't have enough strength to do

>all that I need to do and deal with the pain. I need to be at the top of my

>game, but I'm just not. I need to go beyond just moving through the problem

sets

>to really learning this stuff like the back of my hand, but I'm too drained.

> >

> > And all the things about cutting more painful foods from my diet? I use that

>and it helps, but everything's painful. Sometimes my most painful occasions are

>just with water. The only way I can eat is keeping up hope that maybe this time

>it will be easier. Imagining that this time it won't hurt. Sometimes when I'm

>burned out I claim I'll just stopping eating painful things = stop eating, but

>that doesn't work. I have to eat.

>

> > I try to not eat before going to sleep, but dinner time is six, and bedtime

>is often determined by either when my problem set gets done or when my brain

>shuts down from exhaustion. I don't know when to cut off food intake, since I

>don't plan when I'm going to fall asleep. The best way to stay awake is food.

>What should I do when I become ravishingly hungry at 2 AM?

>

> >

> > Sorry about the long post, but it feels good to write this stuff to people

>who have a deeper appreciation for what's going on. Does anyone have advice for

>keeping up emotional strength?

> > Two more short questions:

> > How should I handle meals when people notice I've barely touched my food, or

>I have to withdraw inward because of the pain?

> > Also, how important is it to have a family member/ parent at any medical

>tests or meetings instead of a college friend?

> >

> > Lee

> >

>

[Guest guest]

I travel and eat in restaraunts all the time. Soda or beer work better for me

than tea.

If you have a list of foods that work for you, it helps a lot. The post myotomy

diet on the site is a great resource. For example, I was suprised to find that

toast is way easier to swallow than bread. That was the opposite of what I

thought. Grilled sandwiches give me no trouble.

My nights are better since the myotmy although I have to take prilosec or I'll

wake up early in the AM in pain from acid reflux.

Good luck

Sent from Smrtphone That Lacks Spellchecker

Capone <rebeccacapone@...> wrote:

>I think you learn what to order in a restaurant and always order hot tea--it

>helps digestion--It works better for me if no one knows-I don't want people

>watching what I eat--the anxiety for me now is that I'm afraid to

>travel--especially internationally--I'm afraid that I will choke, need an

>endoscopy and will not be able to get one--is anyone else afraid to

>travel--thanks, from Boston

>

>

>

>

>________________________________

>From: Kay Davies <kayf.davies@...>

>achalasia

>Sent: Mon, April 25, 2011 3:38:48 PM

>Subject: Re: Emotional Aspects

>

> 

>Hi , I totally understand and relate to the emotional issues you

>describe. It can be tortuous agreeing to a meal with others. I have no answers

>for how to deal with the questions when people notice I havn't eaten much - I

>end up withdrawing and not seeing anyone for ages. I am getting better at

>refusing invites unless I know the friends very well. It definately helps to be

>comfortable with people who are sympathetic and won't make a big deal.

>

>It takes a lot of energy to deal with the difficulty of eating and I find that

>sometimes I manage and other times I just run out of that energy. It is really

>tough. With the help and support of some good friends and my brilliant husband

I

>get by but it is hard work. Finding this group has helped so much to read other

>peoples stories and discover that I am no-longer alone which is how I felt

until

>finding it.

>

>Be kind to yourself and each morning start with a new day. don't beat yourself

>up, this condition is tough. I have suffered with depression in the past and so

>have learned to take each day at a time. A cliche but it really helps. All the

>best to you. Kay

>

>

>> >

>> > Hi,

>> > So the medical side of my story is pretty simple. Starting having symptoms

>>1.5 years ago, diagnosed with acid reflux for 6 months to no avail, diagnosed

>>with Achalasia in January, have a meeting with Dr. DeMeester at USC coming up

to

>>discuss treatment. I have some sort of pain most times I eat and more intense,

>>debilitating stabbing sensations once day or so. For the last few months I

have

>>also been regurgitating food in the more painful situations. I've been

coughing

>>at night since last summer, and now often wake up regurgitating food. Through

a

>>great deal of determination, the only weight I've lost has been through

running

>>and a transference from fat to muscle.

>>

>> >

>> > So right now my case is straight forward. By the book. It's all quantified.

>>But somehow the coherent logic of it can't seem assuage the fear and strife of

>>it. I should be able to reason myself out of the fear by understanding

>>everything that's going on. I even feel comfortable talking about it to others

>>now, but I still feel isolated by it, especially during meals.

>>

>> >

>> > Food is more than just nutrients in our culture. It's a way to bond with

each

>>other. To take time out from stress and work to talk and relax, but that's

been

>>taken away. It's gone from a time to relax to a self inflicted torture

session.

>>And while the pain stops after meals, it just leaves me emotionally drained

and

>>tired. Most days I handle it, but eventually the emotional toll of forcing

>>myself through pain catches up. I just have to withdraw from the pain and the

>>world and pretend it doesn't exist in some TV show or novel. And the

difficulty

>>sleeping soundly leaves me tired with headaches a great deal of the time.

>> >

>> > Right now I'm a sophomore at Caltech, which if you don't know is home of

one

>>of the most difficult science programs around. People here get burned out even

>>being perfectly healthy. And while I still love what I'm doing and know that

>>this is the best place for me, I feel like I don't have enough strength to do

>>all that I need to do and deal with the pain. I need to be at the top of my

>>game, but I'm just not. I need to go beyond just moving through the problem

sets

>>to really learning this stuff like the back of my hand, but I'm too drained.

>> >

>> > And all the things about cutting more painful foods from my diet? I use

that

>>and it helps, but everything's painful. Sometimes my most painful occasions

are

>>just with water. The only way I can eat is keeping up hope that maybe this

time

>>it will be easier. Imagining that this time it won't hurt. Sometimes when I'm

>>burned out I claim I'll just stopping eating painful things = stop eating, but

>>that doesn't work. I have to eat.

>>

>> > I try to not eat before going to sleep, but dinner time is six, and bedtime

>>is often determined by either when my problem set gets done or when my brain

>>shuts down from exhaustion. I don't know when to cut off food intake, since I

>>don't plan when I'm going to fall asleep. The best way to stay awake is food.

>>What should I do when I become ravishingly hungry at 2 AM?

>>

>> >

>> > Sorry about the long post, but it feels good to write this stuff to people

>>who have a deeper appreciation for what's going on. Does anyone have advice

for

>>keeping up emotional strength?

>> > Two more short questions:

>> > How should I handle meals when people notice I've barely touched my food,

or

>>I have to withdraw inward because of the pain?

>> > Also, how important is it to have a family member/ parent at any medical

>>tests or meetings instead of a college friend?

>> >

>> > Lee

>> >

>>

>

>

>

>

>

[Guest guest]

where is the post surgery diet---thanks, from Boston

________________________________

From: Hoffman <rp518dan@...>

Capone <rebeccacapone@...>; achalasia

Sent: Mon, April 25, 2011 5:16:08 PM

Subject: Re: Re: Emotional Aspects

 

I travel and eat in restaraunts all the time. Soda or beer work better for me

than tea.

If you have a list of foods that work for you, it helps a lot. The post myotomy

diet on the site is a great resource. For example, I was suprised to find that

toast is way easier to swallow than bread. That was the opposite of what I

thought. Grilled sandwiches give me no trouble.

My nights are better since the myotmy although I have to take prilosec or I'll

wake up early in the AM in pain from acid reflux.

Good luck

Sent from Smrtphone That Lacks Spellchecker

Capone <rebeccacapone@...> wrote:

>I think you learn what to order in a restaurant and always order hot tea--it

>helps digestion--It works better for me if no one knows-I don't want people

>watching what I eat--the anxiety for me now is that I'm afraid to

>travel--especially internationally--I'm afraid that I will choke, need an

>endoscopy and will not be able to get one--is anyone else afraid to

>travel--thanks, from Boston

>

>

>

>

>________________________________

>From: Kay Davies <kayf.davies@...>

>achalasia

>Sent: Mon, April 25, 2011 3:38:48 PM

>Subject: Re: Emotional Aspects

>

> 

>Hi , I totally understand and relate to the emotional issues you

>describe. It can be tortuous agreeing to a meal with others. I have no answers

>for how to deal with the questions when people notice I havn't eaten much - I

>end up withdrawing and not seeing anyone for ages. I am getting better at

>refusing invites unless I know the friends very well. It definately helps to be

>comfortable with people who are sympathetic and won't make a big deal.

>

>It takes a lot of energy to deal with the difficulty of eating and I find that

>sometimes I manage and other times I just run out of that energy. It is really

>tough. With the help and support of some good friends and my brilliant husband

I

>

>get by but it is hard work. Finding this group has helped so much to read other

>peoples stories and discover that I am no-longer alone which is how I felt

until

>

>finding it.

>

>Be kind to yourself and each morning start with a new day. don't beat yourself

>up, this condition is tough. I have suffered with depression in the past and so

>have learned to take each day at a time. A cliche but it really helps. All the

>best to you. Kay

>

>

>> >

>> > Hi,

>> > So the medical side of my story is pretty simple. Starting having symptoms

>>1.5 years ago, diagnosed with acid reflux for 6 months to no avail, diagnosed

>>with Achalasia in January, have a meeting with Dr. DeMeester at USC coming up

to

>>

>>discuss treatment. I have some sort of pain most times I eat and more intense,

>>debilitating stabbing sensations once day or so. For the last few months I

have

>

>>also been regurgitating food in the more painful situations. I've been

coughing

>

>>at night since last summer, and now often wake up regurgitating food. Through

a

>

>>great deal of determination, the only weight I've lost has been through

running

>

>>and a transference from fat to muscle.

>>

>> >

>> > So right now my case is straight forward. By the book. It's all quantified.

>>But somehow the coherent logic of it can't seem assuage the fear and strife of

>>it. I should be able to reason myself out of the fear by understanding

>>everything that's going on. I even feel comfortable talking about it to others

>>now, but I still feel isolated by it, especially during meals.

>>

>> >

>> > Food is more than just nutrients in our culture. It's a way to bond with

each

>>

>>other. To take time out from stress and work to talk and relax, but that's

been

>

>>taken away. It's gone from a time to relax to a self inflicted torture

session.

>

>>And while the pain stops after meals, it just leaves me emotionally drained

and

>

>>tired. Most days I handle it, but eventually the emotional toll of forcing

>>myself through pain catches up. I just have to withdraw from the pain and the

>>world and pretend it doesn't exist in some TV show or novel. And the

difficulty

>

>>sleeping soundly leaves me tired with headaches a great deal of the time.

>> >

>> > Right now I'm a sophomore at Caltech, which if you don't know is home of

one

>

>>of the most difficult science programs around. People here get burned out even

>>being perfectly healthy. And while I still love what I'm doing and know that

>>this is the best place for me, I feel like I don't have enough strength to do

>>all that I need to do and deal with the pain. I need to be at the top of my

>>game, but I'm just not. I need to go beyond just moving through the problem

sets

>>

>>to really learning this stuff like the back of my hand, but I'm too drained.

>> >

>> > And all the things about cutting more painful foods from my diet? I use

that

>

>>and it helps, but everything's painful. Sometimes my most painful occasions

are

>

>>just with water. The only way I can eat is keeping up hope that maybe this

time

>

>>it will be easier. Imagining that this time it won't hurt. Sometimes when I'm

>>burned out I claim I'll just stopping eating painful things = stop eating, but

>>that doesn't work. I have to eat.

>>

>> > I try to not eat before going to sleep, but dinner time is six, and bedtime

>>is often determined by either when my problem set gets done or when my brain

>>shuts down from exhaustion. I don't know when to cut off food intake, since I

>>don't plan when I'm going to fall asleep. The best way to stay awake is food.

>>What should I do when I become ravishingly hungry at 2 AM?

>>

>> >

>> > Sorry about the long post, but it feels good to write this stuff to people

>>who have a deeper appreciation for what's going on. Does anyone have advice

for

>

>>keeping up emotional strength?

>> > Two more short questions:

>> > How should I handle meals when people notice I've barely touched my food,

or

>

>>I have to withdraw inward because of the pain?

>> > Also, how important is it to have a family member/ parent at any medical

>>tests or meetings instead of a college friend?

>> >

>> > Lee

>> >

>>

>

>

>

>

>

[Guest guest]

Hi ,

Glad you found our support group, isn't it wonderful to speak with others who

can relate!!  You are right, every meal is so exhausting, trying to " push "

things along and then end up regurgitating parts of every meal is frustrating. 

I had A for about 22yrs before I finally had surgery last summer.  I spent most

of my life trying to deal with the situation of wanting to go out and have meals

or drinks and just feel normal.  What I did, was I would try and eat or snack

on

things (while alone), then when I went out with friends, I would order soup or

something that I could " act " like I was eating.  Yes, everyone wondered why I

barely would eat, many thought I was just being " vain " about my weight or

watching my figure....or had an eating disorder!  I had all the funny looks and

after awhile, I just didn't care what they thought.  My real friends, new about

my situation, or at least I tried to explain it to them.  I felt very alone

with

this, until I met this group. 

I also lived under a great deal of stress, and I also felt drained most of the

time.  I ran a small business, I worked LONG hours and many times I did not

know

how I was able to keep up with things.  We can't eat, it's freaken hard to do

what others do.  I'm so glad that you are thinking of having the surgery by

DeMeester at USC, I hear he is wonderful.  I had my surgery with Dr. Maish

at UCLA, she actually worked with DeMeester and learned from him.  My surgery

was a complete success.  I am no longer feeling poorly or having severe time

trying to eat...all of that has changed dramatically.  I can eat, and yes I

have

gained a few pounds cause I want to eat all those things that I could not even

consider before. 

I wish you all the best, I know it's been rough and you are doing double time

compared to the others!  You will be okay, I think once you meet and have a

face

to face with a top surgeon like Dr. DeMeester, you will feel relief that there

is help and it can be fixed. 

Keep me and the group updated on your progress!  If you have any questions,

please feel free to ask me! 

Julee So. Calif. 

"

________________________________

From: cclee271828 <chrissie.c.l@...>

achalasia

Sent: Fri, April 22, 2011 8:01:12 PM

Subject: Emotional Aspects

 

Hi,

So the medical side of my story is pretty simple. Starting having symptoms 1.5

years ago, diagnosed with acid reflux for 6 months to no avail, diagnosed with

Achalasia in January, have a meeting with Dr. DeMeester at USC coming up to

discuss treatment. I have some sort of pain most times I eat and more intense,

debilitating stabbing sensations once day or so. For the last few months I have

also been regurgitating food in the more painful situations. I've been coughing

at night since last summer, and now often wake up regurgitating food. Through a

great deal of determination, the only weight I've lost has been through running

and a transference from fat to muscle.

So right now my case is straight forward. By the book. It's all quantified. But

somehow the coherent logic of it can't seem assuage the fear and strife of it. I

should be able to reason myself out of the fear by understanding everything

that's going on. I even feel comfortable talking about it to others now, but I

still feel isolated by it, especially during meals.

Food is more than just nutrients in our culture. It's a way to bond with each

other. To take time out from stress and work to talk and relax, but that's been

taken away. It's gone from a time to relax to a self inflicted torture session.

And while the pain stops after meals, it just leaves me emotionally drained and

tired. Most days I handle it, but eventually the emotional toll of forcing

myself through pain catches up. I just have to withdraw from the pain and the

world and pretend it doesn't exist in some TV show or novel. And the difficulty

sleeping soundly leaves me tired with headaches a great deal of the time.

Right now I'm a sophomore at Caltech, which if you don't know is home of one of

the most difficult science programs around. People here get burned out even

being perfectly healthy. And while I still love what I'm doing and know that

this is the best place for me, I feel like I don't have enough strength to do

all that I need to do and deal with the pain. I need to be at the top of my

game, but I'm just not. I need to go beyond just moving through the problem sets

to really learning this stuff like the back of my hand, but I'm too drained.

And all the things about cutting more painful foods from my diet? I use that and

it helps, but everything's painful. Sometimes my most painful occasions are just

with water. The only way I can eat is keeping up hope that maybe this time it

will be easier. Imagining that this time it won't hurt. Sometimes when I'm

burned out I claim I'll just stopping eating painful things = stop eating, but

that doesn't work. I have to eat.

I try to not eat before going to sleep, but dinner time is six, and bedtime is

often determined by either when my problem set gets done or when my brain shuts

down from exhaustion. I don't know when to cut off food intake, since I don't

plan when I'm going to fall asleep. The best way to stay awake is food. What

should I do when I become ravishingly hungry at 2 AM?

Sorry about the long post, but it feels good to write this stuff to people who

have a deeper appreciation for what's going on. Does anyone have advice for

keeping up emotional strength?

Two more short questions:

How should I handle meals when people notice I've barely touched my food, or I

have to withdraw inward because of the pain?

Also, how important is it to have a family member/ parent at any medical tests

or meetings instead of a college friend?

Lee

[Guest guest]

In the " Files " section of the group's page is a section entitled " myotomy

diets " . In another section, called " database " are a couple of really great posts

by " toomuchclutter " " on " goodluck " and " badluck " foods for us.

My experience is along those lines, but I have better luck with chicken than she

does. I do eat pizza, but know that I'll pay for it later. Priloxec before

dinner and Tums by my bed for the inevitable 3:30 or so AM painful wakeup are my

preparation.

Here's a post fundoplication diet that gives us an idea

http://www.preopguide.com/PostFundoDiet.html

I found some others out there. My experience is that when my LES is inflamed or

acting up, it's better to step down the ladder on the  post funduplication diet

to earlier stages. If I have to eat soup with overcooked veggies and noodles,

with crackers on the side, that's gotta do. I am, I fear, still not as good as I

need to be when it's time to stop eating and everything is amazing.  <sigh>

Dan

>I think you learn what to order in a restaurant and always order hot tea--it

>helps digestion--It works better for me if no one knows-I don't want people

>watching what I eat--the anxiety for me now is that I'm afraid to

>travel--especially internationally--I'm afraid that I will choke, need an

>endoscopy and will not be able to get one--is anyone else afraid to

>travel--thanks, from Boston

>

>

>

>

>________________________________

>From: Kay Davies <kayf.davies@...>

>achalasia

>Sent: Mon, April 25, 2011 3:38:48 PM

>Subject: Re: Emotional Aspects

>

> 

>Hi , I totally understand and relate to the emotional issues you

>describe. It can be tortuous agreeing to a meal with others. I have no answers

>for how to deal with the questions when people notice I havn't eaten much - I

>end up withdrawing and not seeing anyone for ages. I am getting better at

>refusing invites unless I know the friends very well. It definately helps to be

>comfortable with people who are sympathetic and won't make a big deal.

>

>It takes a lot of energy to deal with the difficulty of eating and I find that

>sometimes I manage and other times I just run out of that energy. It is really

>tough. With the help and support of some good friends and my brilliant husband

I

>

>get by but it is hard work. Finding this group has helped so much to read other

>peoples stories and discover that I am no-longer alone which is how I felt

until

>

>finding it.

>

>Be kind to yourself and each morning start with a new day. don't beat yourself

>up, this condition is tough. I have suffered with depression in the past and so

>have learned to take each day at a time. A cliche but it really helps. All the

>best to you. Kay

>

>

>> >

>> > Hi,

>> > So the medical side of my story is pretty simple. Starting having symptoms

>>1.5 years ago, diagnosed with acid reflux for 6 months to no avail, diagnosed

>>with Achalasia in January, have a meeting with Dr. DeMeester at USC coming up

to

>>

>>discuss treatment. I have some sort of pain most times I eat and more intense,

>>debilitating stabbing sensations once day or so. For the last few months I

have

>

>>also been regurgitating food in the more painful situations. I've been

coughing

>

>>at night since last summer, and now often wake up regurgitating food. Through

a

>

>>great deal of determination, the only weight I've lost has been through

running

>

>>and a transference from fat to muscle.

>>

>> >

>> > So right now my case is straight forward. By the book. It's all quantified.

>>But somehow the coherent logic of it can't seem assuage the fear and strife of

>>it. I should be able to reason myself out of the fear by understanding

>>everything that's going on. I even feel comfortable talking about it to others

>>now, but I still feel isolated by it, especially during meals.

>>

>> >

>> > Food is more than just nutrients in our culture. It's a way to bond with

each

>>

>>other. To take time out from stress and work to talk and relax, but that's

been

>

>>taken away. It's gone from a time to relax to a self inflicted torture

session.

>

>>And while the pain stops after meals, it just leaves me emotionally drained

and

>

>>tired. Most days I handle it, but eventually the emotional toll of forcing

>>myself through pain catches up. I just have to withdraw from the pain and the

>>world and pretend it doesn't exist in some TV show or novel. And the

difficulty

>

>>sleeping soundly leaves me tired with headaches a great deal of the time.

>> >

>> > Right now I'm a sophomore at Caltech, which if you don't know is home of

one

>

>>of the most difficult science programs around. People here get burned out even

>>being perfectly healthy. And while I still love what I'm doing and know that

>>this is the best place for me, I feel like I don't have enough strength to do

>>all that I need to do and deal with the pain. I need to be at the top of my

>>game, but I'm just not. I need to go beyond just moving through the problem

sets

>>

>>to really learning this stuff like the back of my hand, but I'm too drained.

>> >

>> > And all the things about cutting more painful foods from my diet? I use

that

>

>>and it helps, but everything's painful. Sometimes my most painful occasions

are

>

>>just with water. The only way I can eat is keeping up hope that maybe this

time

>

>>it will be easier. Imagining that this time it won't hurt. Sometimes when I'm

>>burned out I claim I'll just stopping eating painful things = stop eating, but

>>that doesn't work. I have to eat.

>>

>> > I try to not eat before going to sleep, but dinner time is six, and bedtime

>>is often determined by either when my problem set gets done or when my brain

>>shuts down from exhaustion. I don't know when to cut off food intake, since I

>>don't plan when I'm going to fall asleep. The best way to stay awake is food.

>>What should I do when I become ravishingly hungry at 2 AM?

>>

>> >

>> > Sorry about the long post, but it feels good to write this stuff to people

>>who have a deeper appreciation for what's going on. Does anyone have advice

for

>

>>keeping up emotional strength?

>> > Two more short questions:

>> > How should I handle meals when people notice I've barely touched my food,

or

>

>>I have to withdraw inward because of the pain?

>> > Also, how important is it to have a family member/ parent at any medical

>>tests or meetings instead of a college friend?

>> >

>> > Lee

>> >

>>

>

>

>

>

>

[Guest guest]

wrote:

>

> ... But somehow the coherent logic of it can't seem assuage the fear

> and strife of it. I should be able to reason myself out of the fear by

> understanding everything that's going on. ... Right now I'm a

> sophomore at Caltech, which if you don't know is home of one of the

> most difficult science programs around. ...

>

Your strength is also your weakness. Someone who is able to do the math

and science at that level is able to focus more in a special way than

others. People think scientists are absent minded but it actually is

that they are very, very, focused. You may have worked on a problem for

hours without noticing how late it was or that you hadn't eaten. That is

because you can shut out the world and even your own body. It is a

trance in a way like hypnosis is a trance. Emotions sometimes need that

but they also need us to connect to the world not shut it out. So, here

you are reaching out. Now here don't focus but observe the large

picture. As a child we learn that at some point we were born and there

is a time to die. There are the season of life. We embrace them and just

call it life, and we go on to live our life. We can focus on the day

while being connected to the life. As achalasics we have seasons that

others do not share. Embrace them, they are part of your life. Then you

can be connect to your life without as much emotional distraction. If

so, you will then be able to use your gift of focus to even deal with

the achalasia and if you work at it you can bring others into your

focused view.

> How should I handle meals when people notice I've barely touched my

> food, or I have to withdraw inward because of the pain?

For decades I lived with achalasia without even telling my doctors. No

one but me know I had a problem. I only told my doctor when I reached

the point that I felt I had to be ready for someone to figure out there

was a problem. Here is how I did it. When at a meal with others I

focused on acting normal no matter what happened with my body. In other

words whatever happened, happened, but I put it out of my mind and went

on as if it never happened. If there had been a conversion going on I

made sure it continued without delay. If I decide not to eat any more

then I acted as if that was normal and I put the food out of my mind by

focusing on the social connections, the entertainment or whatever there

was, but I would not act on the achalasia event as if it had any

importance. If I had to get up and to to a rest room I did it as if

everyone had a turn going and this was mine. Again, when I came back it

was business as usual without delay.

After I told the doctor and had a diagnosis I told my family and

friends. Their response was " what problem eating. " I had choked and

coughed up food in front of them, I had left the table in the middle of

meals but they didn't see anything they needed to pay attention to or

remember because they saw it through the image I focused on providing.

When you are not touching your food be the person you need to be to be

someone that doesn't need to touch your food. Let them believe it. Don't

let an achalasia moment be about achalasia. It didn't happen.

> Also, how important is it to have a family member/ parent at any

> medical tests or meetings instead of a college friend?

A wise friend is better than a foolish family member but friends come

and go and this for life.

notan