Re: HM - Success or failure?

[Guest guest]

Kim wrote:

>

> ...

> This virus is in the herpes family but it is not that kind. It is like

> the cold sore kind, which I have never even had. He told me to swish

> 500 mg of Tetracycline ...

>

The tetracycline won't do anything for the virus. It is probably in case

of secondary bacterial infections.

> ... I am wondering if anyone in this group has actually had these

> types of problems before or after diagnosis of A.

>

Once you have a case of herpes, either type, you probably have it for

life. These viruses like to hide in your nerves after an infection until

they break out and cause another episode. Chicken pox is also a herpes

virus and also hides in your nerves and comes back latter in life as

shingles. Because of they hide in nerves there has been research to see

if they could be responsible for the damage to nerves caused by

achalasia. There are some studies that seem to indicate that there could

be a connection and other research that seems to say they are not

connect to achalasia. In the US something like 60% of the population has

type 1 and another 16% have type 2. In some parts of the world the rate

is even higher. Also, chicken pox has been very common in children. If

these viruses do have anything to do with achalasia one has to ask why

so few who have the viruses end up with achalasia. Turning it around and

not looking for a cause it may be that people that have achalasia, or

are more likely to get it, may react more to the virus in our bodies

even between outbreaks. No one really knows.

notan

[Guest guest]

Honestly, I think some people just have better results than others. It is so

frustrating and I know how you feel.... it wears you down not just physically

but mentally. You just wish they could do something for you right now. I have my

good days and my bad days too. I am 42 and can't believe I have to live the rest

of my life like this, but it really took me some time to accept it and have a

more positive outlook on things. I noticed when I was really stressed out I

would have more spasms and a much harder time swallowing. And I can hear that

same stress in your words , the way I felt before my last dilation. I thought I

was going to die if I couldn't get relief soon.

My boyfreind got me a food processor for Valentine's Day and I shred what little

meat I do eat and add some type of liquid to get it to go down easier. V8 makes

some great juices and pureed soups, which helps me keep my caloriers and

nutrients up. I think with time, we each find things that work for us, or help

us through in the meantime. Get creative. I have so much food in my house

because my taste buds are kind of sensitive.

I hope you get some relief soon.

 

Kim A

 

 

 

rom: lindsayaus <lindsay_kite@...>

achalasia

Sent: Tuesday, January 31, 2012 9:44 PM

Subject: Re: HM - Success or failure?

 

Of course my HM is going to fail if the cut isn't made long enough!!!

I thought only inexperienced surgeons did this!

Why would a very experienced surgeon get this wrong??? I am lost for words

right now.

I just want to scream now and let out all my frustration!!!!

Now I wait 2 weeks for a video manometry, another week to go back to my

surgeon...then possibly more surgery to get it right the second time! I will be

refusing to pay to have it done again so soon!

> > > > >

> > > > > Thanks Julee, I think because it's been Christmas and summer here it's

been hard. Summer is normally our busy socializing season, with BBQ's by the

pool. In winter when we hibernate more and are busy running our boys around to

soccer practice and games it won't be quite as difficult.

> > > > > Not sure how you put up with it for 15 years without intervention!

> > > > >

> > > > >

> > > > >

> > > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

I am sad because I used to love to cook! We installed a beautiful new kitchen

only 10 months before I got diagnosed with A. Now I feel my family is suffering

because I don't want to cook or bake anything that I can't eat. I think that's

one of the hardest things.

I am 50 and my boys have just got the age when my husband and I could go out for

dinner without having to find babysitters. Now I can't go out for dinner at

all! My plans for traveling now and in retirement have gone out the window. My

life is not my life anymore.....it's not really a life at the moment...it's an

existence, and it's a waiting game from one appointment after another.

> > > > > >

> > > > > > Thanks Julee, I think because it's been Christmas and summer here

it's been hard. Summer is normally our busy socializing season, with BBQ's by

the pool. In winter when we hibernate more and are busy running our boys around

to soccer practice and games it won't be quite as difficult.

> > > > > > Not sure how you put up with it for 15 years without intervention!

> > > > > >

> > > > > >

> > > > > >

> > > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

This doesn't have to be the story of your life, just a chapter in it. U have

choices. Don't allow fear to dictate the future. You can be an active

participant in your life if you choose too. There are other treatment options.

This disease need not define Who you are. It is simply just a small part of who

you are. Like having blue eyes is a part of who you are. Eyes are Important but

it doesn't define you. I was concerned when my son began to define himself by

this disease. He fell into self pity. I had to remind him achalasis wasn't who

he was. I had to get him out of his own head. Consider who and what you want to

be and then take the Step necessary to get there. Are you a victim or are you a

survivor. I too slip back into thinking what life was like before achalasia for

my son. It's ok to visit that place once and awhile, but I don't want to live

there. You have choices.

Connected by DROID on Verizon Wireless

Re: HM - Success or failure?

I am sad because I used to love to cook! We installed a beautiful new kitchen

only 10 months before I got diagnosed with A. Now I feel my family is suffering

because I don't want to cook or bake anything that I can't eat. I think that's

one of the hardest things.

I am 50 and my boys have just got the age when my husband and I could go out for

dinner without having to find babysitters. Now I can't go out for dinner at

all! My plans for traveling now and in retirement have gone out the window. My

life is not my life anymore.....it's not really a life at the moment...it's an

existence, and it's a waiting game from one appointment after another.

> > > > > >

> > > > > > Thanks Julee, I think because it's been Christmas and summer here

it's been hard. Summer is normally our busy socializing season, with BBQ's by

the pool. In winter when we hibernate more and are busy running our boys around

to soccer practice and games it won't be quite as difficult.

> > > > > > Not sure how you put up with it for 15 years without intervention!

> > > > > >

> > > > > >

> > > > > >

> > > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Your advice, " Kotacj " which was given to me three years ago by two people who

came from different " worlds " help turnaround my life. Your wise words can be

directed in any number of ways to life's situations. Whether it be " achalasia "

or " grades in school, " our " careers " or something bad that unfortunately happens

to a good person, your advice applies.  " Stuff " happens to anyone.  Its what

we do about it that matters. Unless we actually want to be defined by an event

that enters " uninvited " into our lives, we have to take a step aside and decide

" OK, this happened to me. What am I going to do about it now? " Do we get defined

by it? That is up to each person to decide.

 

I appreciate your taking the time to write about people defining themselves by a

disease, and as I said, by anything else that might happen to them. It's can

be easy to allow this to happen, and very difficult to dig oneself out of once

it has taken hold. I know what its like not to be able to eat and drink, and I

did get depressed by it at times.  While I am no hero, I just had too much to

live for to allow this disease to take over. One has to make adjustments in

their life, and those who are close to the person suffering often have to do so

as well. Nobody said it would be easy. Life is not easy.

 

Whether it be achalasia or other tragedies that befall us, the words that my

friend told me in a speech three years ago, which I will share, helped change my

life, and not let me get defined by an unfortunate situation that was destroying

it. 

  " It's not what happens to you that's important.  It's how you react to it.

Pain and suffering doesn't come from what happens to us. Pain and suffering

comes from the stories we tell ourselves about the consequences, about the

future about what's going to happen as a result of what happened. "

 

More to the point, he said, in quoting the Greek scholar, Epictetus,

who said, " We cannot choose our external circumstances, but we can always choose

how we respond to them. " In other words,  my friend concluded " we can always

choose how we react. "

 

, I have read all your posts. I understand how you feel. You need to

first get your family behind you by getting them to completely understand what

you are going thru. Then work together to adjust your life styles. Achalasia is

rarely fatal. Imagine what your life might be like if you had a terminal disease

(god forbid). You can work thru this with your family. You're seeing a great

surgeon and he will eventually find the answer you are looking for, but it may

not come right away, but it will. Many of us on this great support group have

gone thru difficult and frustrating times simply wanting to be able to eat a

meal like a normal person, who takes it for granted everyday. " Patience " does

not come easy when you can't enjoy a meal like a normal person. You need to

patient, not by sitting back and waiting, but by pressing doctors into action,

knowing that by demanding answers that, in time, they will come, and that your

life will dramatically

improve.

 

 

________________________________

From: " kotacj@... " <kotacj@...>

achalasia

Sent: Monday, February 13, 2012 7:03 AM

Subject: Re: Re: HM - Success or failure?

 

This doesn't have to be the story of your life, just a chapter in it. U have

choices. Don't allow fear to dictate the future. You can be an active

participant in your life if you choose too. There are other treatment options.

This disease need not define Who you are. It is simply just a small part of who

you are. Like having blue eyes is a part of who you are. Eyes are Important but

it doesn't define you. I was concerned when my son began to define himself by

this disease. He fell into self pity. I had to remind him achalasis wasn't who

he was. I had to get him out of his own head. Consider who and what you want to

be and then take the Step necessary to get there. Are you a victim or are you a

survivor. I too slip back into thinking what life was like before achalasia for

my son. It's ok to visit that place once and awhile, but I don't want to live

there. You have choices.

Connected by DROID on Verizon Wireless

Re: HM - Success or failure?

I am sad because I used to love to cook! We installed a beautiful new kitchen

only 10 months before I got diagnosed with A. Now I feel my family is suffering

because I don't want to cook or bake anything that I can't eat. I think that's

one of the hardest things.

I am 50 and my boys have just got the age when my husband and I could go out for

dinner without having to find babysitters. Now I can't go out for dinner at all!

My plans for traveling now and in retirement have gone out the window. My life

is not my life anymore.....it's not really a life at the moment...it's an

existence, and it's a waiting game from one appointment after another.

> > > > > >

> > > > > > Thanks Julee, I think because it's been Christmas and summer here

it's been hard. Summer is normally our busy socializing season, with BBQ's by

the pool. In winter when we hibernate more and are busy running our boys around

to soccer practice and games it won't be quite as difficult.

> > > > > > Not sure how you put up with it for 15 years without intervention!

> > > > > >

> > > > > >

> > > > > >

> > > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Hi, .

wrote:

>

> I am sad because I used to love to cook! We installed a beautiful new

> kitchen only 10 months before I got diagnosed with A. ...

>

I noticed the " We " in that statement. Imagine losing part of the We. In

ways losing the things we love, such as eating and cooking, are like

losing part of the " we. " The loss of plans, and the things that enrich

our lives are like losing a loved one. For some time afterwards we mourn

the loss. We are sad. We are angry. We get a bit crazy. Hopefully in

time we begin to look forward to our lives again being enriched maybe in

the old ways but possibly new ways. If we fail to find enrichment

depression will prey on us. This is natural, so many in the group will

empathize with you at whatever stage you are in.

In my case I think my wife is sad that I don't cook as much anymore. I

eat just fine now so the achalasia is no longer a reason not to. I guess

I just moved on to other things during that bad time. Now, cooking, been

there, done that. I started leaning to cook before I started grade

school. It was like magic the way things could be combined to make

something new. Some think of it as an art but I think even art is like

magic. Go to a showing of impressionist paintings. A tree is just a

bunch of blotches nothing on it looks like a part of a tree and yet I

see a tree. A bunch of lines and curves is a man, though none of the

lines or curves looks like any part of a man and yet I see a man. Magic!

I know there is science to explain these things and I can see the

science. Call it the child in me. I can see the magic too. The world is

full of magic.

Maybe I will spend some time in the kitchen today so I can feel the

magic of my wife's smile.

notan

[Guest guest]

 you are so right.. i have to say. unless someone was watching me .. like when

we went to the country club and everyone ate but me, no one even knew i was not

eating. i cooked for my husband as i always have. why should he suffer because i

was not eating? i would sit with him and fake sip something. I did not want this

to get the best of me. I did find myself sleeping way more than usual. but after

loosing 70 pounds and taking iuv fluids what could you expect.. DO NOT let it

dictate your life.. i had a myotomy in sept 11.. i have begun having some

problems again. i cantell food is in my E and not going down as fast as it did

immediately after my Myotomy.. but.............. i am going to be ok.. i am

GOING to be ok... i fixed some chicken and rice -thick.. with celery and onions

and milk yesterday.. made it like a casserole used wild rice and also added some

saffron.. it is delish and i am eating half a cup at a time. three times a day

or more. and if

this is what i have to do.. then so be it. but KEEP your chin up! you will be

ok and if it doesnt kill you then you still hve  a lot to be happy about.

healthy happy family... etc. Kim in the Deep South

[Guest guest]

wrote:

>

> ... we have to take a step aside and decide " OK, this happened to me.

> What am I going to do about it now? " Do we get defined by it?...

>

There are times life is so dark and if there is a tunnel you can't see

it because there is no light at the end of it. I have found at those

times that I have to place some part of my mind through the tunnel and

past the darkness to light even if it seems like there is none. That

part of me in the light has to be the bases of my existence, not the

pain, the fears, or the losses. That doesn't mean I don't continue to

suffer in the darkness. I do, but part of me is in the light waiting for

the rest of me to catch up. It helps.

I can't tell someone how I do that. I under stand it sounds a bit silly.

I suspect that you know exactly what I am saying though.

notan

[Guest guest]

I suppose the fact that all the other people who are connected to my cubicle at

work have been sick as well. My glands are still swollen so it's back to my GP

tomorrow!

________________________________

From: lindsayaus <lindsay_kite@...>

achalasia

Sent: Wednesday, February 1, 2012 9:11 PM

Subject: Re: HM - Success or failure?

 

Funny that you should mention a sore throat! I have had one for the last 4 days

but I think it's because I ate a crouton like piece of bread and didn't crunch

it down enough. It may have scratched it. The doc said it's normal and it should

go away in a few days.

> > > >

> > > > I am so sorry to hear your HM was not so successful. Except for

omelettes, I have trouble with bread, unless toasted, and cooked vegetables,

unless they are cut super small. My last dilation was around 8 weeks ago and my

stomach aches are not nearly as bad as they were in the beginning. It is

frustrating and stressful but if I had the HM I would be asking him just what

you said -how is success measured??

> > > > Last year I had 2 dilations, mannometry twice and 3 Esophagrams on top

of the countless doctor visits so I know about the empty pocketbooks. My only

New Year's goal this year was to not see a single doctor for anything!!!!

> > > > - I truly hope this either gets better for you or he has some

resolution in mind. I have found when I am really srtessed out about things it

makes it more difficult to eat, at least for me.

> > > > ÃÆ'‚ 

> > > > Kim A

> > > >

> > > >

> > > > ________________________________

> > > > From: lindsaykite <lindsaykite@>

> > > > achalasia

> > > > Sent: Wednesday, January 11, 2012 2:52 AM

> > > > Subject: HM - Success or failure?

> > > >

> > > >

> > > > ÃÆ'‚ 

> > > > Just wondering how a HM is measured in terms of success or not?

> > > >

> > > > I am now 8 weeks post HM. The only food I have had a little success with

is pizza ( 1 1/2 pieces slowly with 2 full glasses of water to wash it

down)....but I was able to do that pre HM. Bread gets stuck and so does

omelette. Even soft vegetables are not going down well. I am wondering if I am

one of the unlucky 10% who has had a failure!

> > > >

> > > > My eating is pretty much the same as pre HM, and the last few days my

stomach has felt sore and uncomfortable! I have a follow up appointment with my

surgeon Dr Bessel next week, and wonder what questions I need to ask him. Am

wondering where I go from here and whether I went through the whole operation

for nothing....except for a big hole in my purse!

> > > >

> > > > (Australia)

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

I ditto everything that said and Notan!  I stick around this group

because I know that it may help someone to know that things can get better, and

yes it does take patience.  I was diagnosed with achalasia at the age of 30, my

life at the time was married and two small children to raise and a full time

job.  I spent the first 5 years of this disease not getting any anwers, just a

bunch of run around. 

 

My husband and kids were the only real people that saw and somewhat understood

me. But no one really fully understands this except another person with

achalasia.  So I was on this journey basically alone for about 17 years.  In

2004 I found this group and met my very first achalasians!!! That is when I

learned about my situation and armed with that and lots of education, I found

help. 

 

It took 22yrs for me to get help,  Mentally during that time, I forced myself

to move on and do things in ordinary life, I always tried to appear " normal " . 

I think I also put up with it for way too long, but by always putting others

first, I think I just was so frustrated with doctors that I just gave up hope

that anything could be done to help my situation.

 

There are great words of comfort here, you can relate here and never, ever give

up!  Things will get better, maybe not perfect but manageable.  Notan spoke of

looking forward to the light at the end of the tunnel, which to me mirrors my

own personal faith in many ways.

 

It also seems great that many of you that are struggling right now are finding

ways to eat, even if it's a small amount several times a day, which is exactly

what I had to do.  I know it's awful, believe me all of us feel for you, 

 

Julee from The Great Northwest Oregon!

 

 

________________________________

From: lindsayaus <lindsay_kite@...>

achalasia

Sent: Sunday, February 12, 2012 8:17 PM

Subject: Re: HM - Success or failure?

 

I am sad because I used to love to cook! We installed a beautiful new kitchen

only 10 months before I got diagnosed with A. Now I feel my family is suffering

because I don't want to cook or bake anything that I can't eat. I think that's

one of the hardest things.

I am 50 and my boys have just got the age when my husband and I could go out for

dinner without having to find babysitters. Now I can't go out for dinner at

all! My plans for traveling now and in retirement have gone out the window. My

life is not my life anymore.....it's not really a life at the moment...it's an

existence, and it's a waiting game from one appointment after another.

> > > > > >

> > > > > > Thanks Julee, I think because it's been Christmas and summer here

it's been hard. Summer is normally our busy socializing season, with BBQ's by

the pool. In winter when we hibernate more and are busy running our boys around

to soccer practice and games it won't be quite as difficult.

> > > > > > Not sure how you put up with it for 15 years without intervention!

> > > > > >

> > > > > >

> > > > > >

> > > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Thanks guys! I have good days and bad days, but sometimes too many bad days

together get to me. My family understand as much as they can, and I know it

would be worse if I had something terminal, but at times it still feels like I

am in a private hell! When I am home alone I do better because I know what I

can eat. On weekends and evenings when the husband and kids are home eating or

wanting to eat, it's worse.

I am now seeing a dietitian and hopefully will get some answers soon on the next

step for me. Tomorrow I have my video manometry.

> > > > > > >

> > > > > > > Thanks Julee, I think because it's been Christmas and summer here

it's been hard. Summer is normally our busy socializing season, with BBQ's by

the pool. In winter when we hibernate more and are busy running our boys around

to soccer practice and games it won't be quite as difficult.

> > > > > > > Not sure how you put up with it for 15 years without intervention!

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

Good luck tomorrow, .  I know its no " piece of cake " having the

manometry done.  I hope they learn something from it that will prove beneficial

to you.

 

________________________________

From: lindsayaus <lindsay_kite@...>

achalasia

Sent: Monday, February 13, 2012 4:26 PM

Subject: Re: HM - Success or failure?

 

Thanks guys! I have good days and bad days, but sometimes too many bad days

together get to me. My family understand as much as they can, and I know it

would be worse if I had something terminal, but at times it still feels like I

am in a private hell! When I am home alone I do better because I know what I can

eat. On weekends and evenings when the husband and kids are home eating or

wanting to eat, it's worse.

I am now seeing a dietitian and hopefully will get some answers soon on the next

step for me. Tomorrow I have my video manometry.

> > > > > > >

> > > > > > > Thanks Julee, I think because it's been Christmas and summer here

it's been hard. Summer is normally our busy socializing season, with BBQ's by

the pool. In winter when we hibernate more and are busy running our boys around

to soccer practice and games it won't be quite as difficult.

> > > > > > > Not sure how you put up with it for 15 years without intervention!

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

Thanks .

One day at a time! Luckily I really enjoy my work (at home on the PC), and that

has been greatest distraction. I can bury my head in Photoshop for hours and it

is great.

> > > > > > > >

> > > > > > > > Thanks Julee, I think because it's been Christmas and summer

here it's been hard. Summer is normally our busy socializing season, with BBQ's

by the pool. In winter when we hibernate more and are busy running our boys

around to soccer practice and games it won't be quite as difficult.

> > > > > > > > Not sure how you put up with it for 15 years without

intervention!

> > > > > > > >

> > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

[Guest guest]

good luck tomorrow !  I hope you get answers and relief!

Kim

________________________________

From: lindsayaus <lindsay_kite@...>

achalasia

Sent: Monday, February 13, 2012 4:26 PM

Subject: Re: HM - Success or failure?

 

Thanks guys! I have good days and bad days, but sometimes too many bad days

together get to me. My family understand as much as they can, and I know it

would be worse if I had something terminal, but at times it still feels like I

am in a private hell! When I am home alone I do better because I know what I

can eat. On weekends and evenings when the husband and kids are home eating or

wanting to eat, it's worse.

I am now seeing a dietitian and hopefully will get some answers soon on the next

step for me. Tomorrow I have my video manometry.

> > > > > > >

> > > > > > > Thanks Julee, I think because it's been Christmas and summer here

it's been hard. Summer is normally our busy socializing season, with BBQ's by

the pool. In winter when we hibernate more and are busy running our boys around

to soccer practice and games it won't be quite as difficult.

> > > > > > > Not sure how you put up with it for 15 years without intervention!

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

Thanks for all the good wishes.

Just got home from having the video manometry. I forgot how horrible the tube

down the nose felt. It showed a bulge at the bottom of the E. It looked like

an hour glass with only a trickle getting through. Glad that test is behind me.

Now I wait until Monday to see my surgeon.

> > > > > > > >

> > > > > > > > Thanks Julee, I think because it's been Christmas and summer

here it's been hard. Summer is normally our busy socializing season, with BBQ's

by the pool. In winter when we hibernate more and are busy running our boys

around to soccer practice and games it won't be quite as difficult.

> > > > > > > > Not sure how you put up with it for 15 years without

intervention!

> > > > > > > >

> > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

[Guest guest]

So glad that testing is behind u. Hope your surgeon can offer u some relief.

Connected by DROID on Verizon Wireless

Re: HM - Success or failure?

Thanks for all the good wishes.

Just got home from having the video manometry. I forgot how horrible the tube

down the nose felt. It showed a bulge at the bottom of the E. It looked like

an hour glass with only a trickle getting through. Glad that test is behind me.

Now I wait until Monday to see my surgeon.

> > > > > > > >

> > > > > > > > Thanks Julee, I think because it's been Christmas and summer

here it's been hard. Summer is normally our busy socializing season, with BBQ's

by the pool. In winter when we hibernate more and are busy running our boys

around to soccer practice and games it won't be quite as difficult.

> > > > > > > > Not sure how you put up with it for 15 years without

intervention!

> > > > > > > >

> > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

[Guest guest]

Amen to that Lindsey!! Mine is the same way but necessary to give you the best

treatment outlook!!

 

Good luck!

 

Kim A

________________________________

From: lindsayaus <lindsay_kite@...>

achalasia

Sent: Tuesday, February 14, 2012 7:55 PM

Subject: Re: HM - Success or failure?

 

Thanks for all the good wishes.

Just got home from having the video manometry. I forgot how horrible the tube

down the nose felt. It showed a bulge at the bottom of the E. It looked like

an hour glass with only a trickle getting through. Glad that test is behind me.

Now I wait until Monday to see my surgeon.

> > > > > > > >

> > > > > > > > Thanks Julee, I think because it's been Christmas and summer

here it's been hard. Summer is normally our busy socializing season, with BBQ's

by the pool. In winter when we hibernate more and are busy running our boys

around to soccer practice and games it won't be quite as difficult.

> > > > > > > > Not sure how you put up with it for 15 years without

intervention!

> > > > > > > >

> > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

[Guest guest]

Because it was a viral infection I knew it wouldn't do anything for that but he

said it ulcerated in my mouth and that is why he had me swoosh it. My immune

system has been low for a good six months so I can only think that is why I got

that. But you are saying once I get a viral infection of this sort I can get it

again? Or rather I am more prone to it? My GP is thinking I have some type of

autoimmune disorder but not sure which. I really don't want to be put through a

bunch of other tests to figure it out as my doctor doesn't treat anyone else

with Achalasia other than me.

I had a horrible cold, or so I thought 12 years ago and it turned out to be a

viral infection that came out in the form of a tumor in my eye. I had to have it

removed and because I am steroid reactive, who knew, it took like 4 months to

heal. I definitely don't want to be prone to this type of viral infection now.

But it's like you said, it is hard to say why it happens!

 

 

________________________________

From: notan ostrich <notan_ostrich@...>

achalasia

Sent: Tuesday, February 7, 2012 11:41 PM

Subject: Re: Re: HM - Success or failure?

 

Kim wrote:

>

> ...

> This virus is in the herpes family but it is not that kind. It is like

> the cold sore kind, which I have never even had. He told me to swish

> 500 mg of Tetracycline ...

>

The tetracycline won't do anything for the virus. It is probably in case

of secondary bacterial infections.

> ... I am wondering if anyone in this group has actually had these

> types of problems before or after diagnosis of A.

>

Once you have a case of herpes, either type, you probably have it for

life. These viruses like to hide in your nerves after an infection until

they break out and cause another episode. Chicken pox is also a herpes

virus and also hides in your nerves and comes back latter in life as

shingles. Because of they hide in nerves there has been research to see

if they could be responsible for the damage to nerves caused by

achalasia. There are some studies that seem to indicate that there could

be a connection and other research that seems to say they are not

connect to achalasia. In the US something like 60% of the population has

type 1 and another 16% have type 2. In some parts of the world the rate

is even higher. Also, chicken pox has been very common in children. If

these viruses do have anything to do with achalasia one has to ask why

so few who have the viruses end up with achalasia. Turning it around and

not looking for a cause it may be that people that have achalasia, or

are more likely to get it, may react more to the virus in our bodies

even between outbreaks. No one really knows.

notan

[Guest guest]

it gets better. This is not forever, it's just for now!! Don't look that

far down the road yet. Some treatments work better than others. It will never be

perfect but at some point you will have some relief and find ways to cope. Even

though it is hard, find a way to be positive and not be so stressed out. Stress,

at least for me, makes it way worse. Count your blessings no matter what they

are and know it will get better soon!

xoxo

Kim A

 

________________________________

From: lindsayaus <lindsay_kite@...>

achalasia

Sent: Sunday, February 12, 2012 10:17 PM

Subject: Re: HM - Success or failure?

 

I am sad because I used to love to cook! We installed a beautiful new kitchen

only 10 months before I got diagnosed with A. Now I feel my family is suffering

because I don't want to cook or bake anything that I can't eat. I think that's

one of the hardest things.

I am 50 and my boys have just got the age when my husband and I could go out for

dinner without having to find babysitters. Now I can't go out for dinner at

all! My plans for traveling now and in retirement have gone out the window. My

life is not my life anymore.....it's not really a life at the moment...it's an

existence, and it's a waiting game from one appointment after another.

> > > > > >

> > > > > > Thanks Julee, I think because it's been Christmas and summer here

it's been hard. Summer is normally our busy socializing season, with BBQ's by

the pool. In winter when we hibernate more and are busy running our boys around

to soccer practice and games it won't be quite as difficult.

> > > > > > Not sure how you put up with it for 15 years without intervention!

> > > > > >

> > > > > >

> > > > > >

> > > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

This is so true! When I was at my worst I lived in Achalasia hell and just

couldn't get out until I had some relief. A person needs food and water to

sustain life and when you don't have it..... it just wears you down. Self pity

is real easy when you feel it is out of your control. When I went to my last

treatment I was practically singing becasue I was desperate. 

Just remember - this is for now, not forever! It will get better!  

________________________________

From: " kotacj@... " <kotacj@...>

achalasia

Sent: Monday, February 13, 2012 6:03 AM

Subject: Re: Re: HM - Success or failure?

 

This doesn't have to be the story of your life, just a chapter in it. U have

choices. Don't allow fear to dictate the future. You can be an active

participant in your life if you choose too. There are other treatment options.

This disease need not define Who you are. It is simply just a small part of who

you are. Like having blue eyes is a part of who you are. Eyes are Important but

it doesn't define you. I was concerned when my son began to define himself by

this disease. He fell into self pity. I had to remind him achalasis wasn't who

he was. I had to get him out of his own head. Consider who and what you want to

be and then take the Step necessary to get there. Are you a victim or are you a

survivor. I too slip back into thinking what life was like before achalasia for

my son. It's ok to visit that place once and awhile, but I don't want to live

there. You have choices.

Connected by DROID on Verizon Wireless

Re: HM - Success or failure?

I am sad because I used to love to cook! We installed a beautiful new kitchen

only 10 months before I got diagnosed with A. Now I feel my family is suffering

because I don't want to cook or bake anything that I can't eat. I think that's

one of the hardest things.

I am 50 and my boys have just got the age when my husband and I could go out for

dinner without having to find babysitters. Now I can't go out for dinner at

all! My plans for traveling now and in retirement have gone out the window. My

life is not my life anymore.....it's not really a life at the moment...it's an

existence, and it's a waiting game from one appointment after another.

> > > > > >

> > > > > > Thanks Julee, I think because it's been Christmas and summer here

it's been hard. Summer is normally our busy socializing season, with BBQ's by

the pool. In winter when we hibernate more and are busy running our boys around

to soccer practice and games it won't be quite as difficult.

> > > > > > Not sure how you put up with it for 15 years without intervention!

> > > > > >

> > > > > >

> > > > > >

> > > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

,

 

Your post was excellent. You are so right that life throws us curveballs, and we

have to adjust but then we must decide to move forward. Without this group I

don't know if I could have done that. I was embarrassed about my situation and

didn't want too many people in my life to know, so I kind of hid out. Only those

real close to me knew, or had some idea what I was going through. Now I am

coming out with it and telling everyone in my life " It can always be worse - I

may be limited on eating and drinking what I used to but I am alive and

kicking " . I may not be able to have a steak for dinner but so many others cannot

either and it may not be just because they can't swallow. I have to consider

myself lucky that I can afford to eat whatever I want but for medical reasons I

just can't.

My mom always used to tell me " life is about choices " and it is most times but

not always.  

Like said, engage your family and still try and do as much normal

activities as you can. I make things that I can't eat for others becasue I used

to love cooking to. No reason they  shouldn't still enjoy a good meal - don't

let it negatively affect your whole family.

This too shall pass!

 

Kim A

________________________________

From: RICHARD FRIEDMAN <cynmark24@...>

" achalasia " <achalasia >

Sent: Monday, February 13, 2012 8:44 AM

Subject: Re: Re: HM - Success or failure?

 

Your advice, " Kotacj " which was given to me three years ago by two people who

came from different " worlds " help turnaround my life. Your wise words can be

directed in any number of ways to life's situations. Whether it be " achalasia "

or " grades in school, " our " careers " or something bad that unfortunately happens

to a good person, your advice applies.  " Stuff " happens to anyone.  Its what

we do about it that matters. Unless we actually want to be defined by an event

that enters " uninvited " into our lives, we have to take a step aside and decide

" OK, this happened to me. What am I going to do about it now? " Do we get defined

by it? That is up to each person to decide.

 

I appreciate your taking the time to write about people defining themselves by a

disease, and as I said, by anything else that might happen to them. It's can

be easy to allow this to happen, and very difficult to dig oneself out of once

it has taken hold. I know what its like not to be able to eat and drink, and I

did get depressed by it at times.  While I am no hero, I just had too much to

live for to allow this disease to take over. One has to make adjustments in

their life, and those who are close to the person suffering often have to do so

as well. Nobody said it would be easy. Life is not easy.

 

Whether it be achalasia or other tragedies that befall us, the words that my

friend told me in a speech three years ago, which I will share, helped change my

life, and not let me get defined by an unfortunate situation that was destroying

it. 

  " It's not what happens to you that's important.  It's how you react to it.

Pain and suffering doesn't come from what happens to us. Pain and suffering

comes from the stories we tell ourselves about the consequences, about the

future about what's going to happen as a result of what happened. "

 

More to the point, he said, in quoting the Greek scholar, Epictetus,

who said, " We cannot choose our external circumstances, but we can always choose

how we respond to them. " In other words,  my friend concluded " we can always

choose how we react. "

 

, I have read all your posts. I understand how you feel. You need to

first get your family behind you by getting them to completely understand what

you are going thru. Then work together to adjust your life styles. Achalasia is

rarely fatal. Imagine what your life might be like if you had a terminal disease

(god forbid). You can work thru this with your family. You're seeing a great

surgeon and he will eventually find the answer you are looking for, but it may

not come right away, but it will. Many of us on this great support group have

gone thru difficult and frustrating times simply wanting to be able to eat a

meal like a normal person, who takes it for granted everyday. " Patience " does

not come easy when you can't enjoy a meal like a normal person. You need to

patient, not by sitting back and waiting, but by pressing doctors into action,

knowing that by demanding answers that, in time, they will come, and that your

life will dramatically

improve.

 

 

________________________________

From: " kotacj@... " <kotacj@...>

achalasia

Sent: Monday, February 13, 2012 7:03 AM

Subject: Re: Re: HM - Success or failure?

 

This doesn't have to be the story of your life, just a chapter in it. U have

choices. Don't allow fear to dictate the future. You can be an active

participant in your life if you choose too. There are other treatment options.

This disease need not define Who you are. It is simply just a small part of who

you are. Like having blue eyes is a part of who you are. Eyes are Important but

it doesn't define you. I was concerned when my son began to define himself by

this disease. He fell into self pity. I had to remind him achalasis wasn't who

he was. I had to get him out of his own head. Consider who and what you want to

be and then take the Step necessary to get there. Are you a victim or are you a

survivor. I too slip back into thinking what life was like before achalasia for

my son. It's ok to visit that place once and awhile, but I don't want to live

there. You have choices.

Connected by DROID on Verizon Wireless

Re: HM - Success or failure?

I am sad because I used to love to cook! We installed a beautiful new kitchen

only 10 months before I got diagnosed with A. Now I feel my family is suffering

because I don't want to cook or bake anything that I can't eat. I think that's

one of the hardest things.

I am 50 and my boys have just got the age when my husband and I could go out for

dinner without having to find babysitters. Now I can't go out for dinner at all!

My plans for traveling now and in retirement have gone out the window. My life

is not my life anymore.....it's not really a life at the moment...it's an

existence, and it's a waiting game from one appointment after another.

> > > > > >

> > > > > > Thanks Julee, I think because it's been Christmas and summer here

it's been hard. Summer is normally our busy socializing season, with BBQ's by

the pool. In winter when we hibernate more and are busy running our boys around

to soccer practice and games it won't be quite as difficult.

> > > > > > Not sure how you put up with it for 15 years without intervention!

> > > > > >

> > > > > >

> > > > > >

> > > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

I think we become complacent and so used to eating and drinking what we want

that when we can't we look at it as a travesty. And in some ways it is, then we

realize what we take for granted in life. Sure our eating habits will change

going forward, but my food processor has become my new best friend. I eat

smaller portion, less often and more or less semi soft food but in general I can

eat and drink. God deals us the cards but what's important is how we play them!

 

Kim A 

________________________________

From: Kim <kimellenbailey@...>

" achalasia " <achalasia >

Sent: Monday, February 13, 2012 10:23 AM

Subject: Re: HM - Success or failure?

 

 you are so right.. i have to say. unless someone was watching me .. like when

we went to the country club and everyone ate but me, no one even knew i was not

eating. i cooked for my husband as i always have. why should he suffer because i

was not eating? i would sit with him and fake sip something. I did not want this

to get the best of me. I did find myself sleeping way more than usual. but after

loosing 70 pounds and taking iuv fluids what could you expect.. DO NOT let it

dictate your life.. i had a myotomy in sept 11.. i have begun having some

problems again. i cantell food is in my E and not going down as fast as it did

immediately after my Myotomy.. but.............. i am going to be ok.. i am

GOING to be ok... i fixed some chicken and rice -thick.. with celery and onions

and milk yesterday.. made it like a casserole used wild rice and also added some

saffron.. it is delish and i am eating half a cup at a time. three times a day

or more. and if

this is what i have to do.. then so be it. but KEEP your chin up! you will be ok

and if it doesnt kill you then you still hve  a lot to be happy about. healthy

happy family... etc. Kim in the Deep South

[Guest guest]

I am a newbie - just diagnosed in November 2011 and only had swallowing symptoms

since May of 2011. I can't imagine how anyone could go through this for years

and still live. I was stage 2 right off the bat and at the rate I was loosing

weight I would be dead by now without treatment.

My hats off to those of you who have had this for what seems like forever and

were able to manage it. I am able to manage now but couldn't have without

treatment.

________________________________

From: Montoya <medhelpinfo@...>

" achalasia " <achalasia >

Sent: Monday, February 13, 2012 1:13 PM

Subject: Re: Re: HM - Success or failure?

 

I ditto everything that said and Notan!  I stick around this group

because I know that it may help someone to know that things can get better, and

yes it does take patience.  I was diagnosed with achalasia at the age of 30, my

life at the time was married and two small children to raise and a full time

job.  I spent the first 5 years of this disease not getting any anwers, just a

bunch of run around. 

 

My husband and kids were the only real people that saw and somewhat understood

me. But no one really fully understands this except another person with

achalasia.  So I was on this journey basically alone for about 17 years.  In

2004 I found this group and met my very first achalasians!!! That is when I

learned about my situation and armed with that and lots of education, I found

help. 

 

It took 22yrs for me to get help,  Mentally during that time, I forced myself

to move on and do things in ordinary life, I always tried to appear " normal " . 

I think I also put up with it for way too long, but by always putting others

first, I think I just was so frustrated with doctors that I just gave up hope

that anything could be done to help my situation.

 

There are great words of comfort here, you can relate here and never, ever give

up!  Things will get better, maybe not perfect but manageable.  Notan spoke of

looking forward to the light at the end of the tunnel, which to me mirrors my

own personal faith in many ways.

 

It also seems great that many of you that are struggling right now are finding

ways to eat, even if it's a small amount several times a day, which is exactly

what I had to do.  I know it's awful, believe me all of us feel for you, 

 

Julee from The Great Northwest Oregon!

 

 

________________________________

From: lindsayaus <lindsay_kite@...>

achalasia

Sent: Sunday, February 12, 2012 8:17 PM

Subject: Re: HM - Success or failure?

 

I am sad because I used to love to cook! We installed a beautiful new kitchen

only 10 months before I got diagnosed with A. Now I feel my family is suffering

because I don't want to cook or bake anything that I can't eat. I think that's

one of the hardest things.

I am 50 and my boys have just got the age when my husband and I could go out for

dinner without having to find babysitters. Now I can't go out for dinner at

all! My plans for traveling now and in retirement have gone out the window. My

life is not my life anymore.....it's not really a life at the moment...it's an

existence, and it's a waiting game from one appointment after another.

> > > > > >

> > > > > > Thanks Julee, I think because it's been Christmas and summer here

it's been hard. Summer is normally our busy socializing season, with BBQ's by

the pool. In winter when we hibernate more and are busy running our boys around

to soccer practice and games it won't be quite as difficult.

> > > > > > Not sure how you put up with it for 15 years without intervention!

> > > > > >

> > > > > >

> > > > > >

> > > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

I only cook for them when I have the energy, or when I am making soup for me and

can do their veggies at the same time. Low energy seems to be the thing

stopping me cooking lots. Cooking for the them and me takes twice as much

energy!

I treated myself a new camera to cheer me up and give me a distraction. I love

my photography, even though I am no where near an expert....I am learning. I

love trying to get magnificent soccer action photos of my boys, and soccer

season is nearly on us.

> > > > > > >

> > > > > > > Thanks Julee, I think because it's been Christmas and summer here

it's been hard. Summer is normally our busy socializing season, with BBQ's by

the pool. In winter when we hibernate more and are busy running our boys around

to soccer practice and games it won't be quite as difficult.

> > > > > > > Not sure how you put up with it for 15 years without intervention!

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

I was going to tell you my vitamixer was a life saver

Sent from my iPhone