more symptoms!

[Guest guest]

I was also recently diagnosed with A. This was frustrating for me since I

have always been a healthy person. I don't drink or smoke. I exercise

nearly everyday. I have always eaten nutritious meals. Now I have a disease

that may or may not be " fixed " . I always wanted to be a good mom. I have

four children and Achalasia makes life difficult and brings on much

disappointment. But, our trials make us and those around us stronger if we

let them and do the best we can. Keep smiling!

Right now, I would like to list some symptoms that I have or had. When you

look up Achalasia on medical websites, these symptoms are not listed. In

addition, the mental and emotional symptoms related to Achalasia are not

listed.

1. People with A tend to avoid social situations (since most social

situations involve food)

2. You may start to isolate yourself to avoid embarrassment or worry.

(Don't do it! Keep busy, otherwise you might get depressed)

3. Fear of throwing up in public.

4. Inability to speak when food gets stuck.

5. Frustration (When you can only take a bite or two, people think you don't

like their food.)

6. NCCP (non-cardiac chest pain) or Lower esophageal sphincter (LES) spasms

that are freakishly painful, even in the middle of the night.

7. The thought that there is no final cure or solution to Achalasia is

scary...my first thought was, " I think I will just starve myself! Why live

if you can't eat? " I'm over that now.

8. Feeling of worthlessness since you may not be able accomplish or

participate in activities or duties that you used to (because of lack of

energy or frequent illness).

9. More frequent colds, flus, and illness. I don't know why...(I know I

can't take pills easily, when I have a bad night-time cold, I can't sleep

and then I don't get better, I get worse.)

10. ANGER, I was so mad for a while because I felt like opportunities and

control in my life was being taken away.

11. Chocolate goes down the best, no joke (for me anyways)

My advice:

Some people have been " fixed " so keep some hope and try hard to remain

positive. Pray for guidance. Surround yourself with compassionate people.

Keep busy. Research. This group has the most information and I

found answers by googling!!!

[Guest guest]

Some of those remain, however slightly, after surgery. Maybe just habit. The

deli people will hand me a sample of whatever they sliced and I automatically

turn it down: eating meat is easy for me, but I still want a glass of water

handy to wash it down, same with cheese. It is an icky regurg taste of the last

bite until I drink water.

Speaking in public or in front of a group is difficult because the saliva

doesn't go down and raising your voice slightly seems to trigger more saliva and

sometimes spasms. With the saliva comes coughing.

I've turned into a slight germ a phobe because most germs seem to turn into

coughing issues forever. Too difficult to explain to people, but really I want

to run as fast as possible if there is a runny nosed kid close by or I have to

shake hands with someone that is obviously ill.

But these are very minor problems and not disabling in any way, they are just

part of living now. I eat 95% of normal.

One of my neighbors is a pharmaceutical rep and is often in surgery with

doctors. He told me to make sure no reps were in the room pitching products

(like he does) because they may experiment on very minor things, such as tape or

equipment or glue, or any machines. You may not even know that is possible. At

the last minute, when I was presented with the permission forms I hand wrote in

that no reps were to be in the room and made the admissions clerk sign it. I

couldn't find the doctor at the time, but told it to him before surgery and that

I had written it down. Those forms weren't presented until just as I went in

for surgery, so no time to read. Looking back, I should have seen them before

and discussed them with my doctor earlier.

Let us know when you have surgery. For the vast majority of us, life is much

better after surgery. My doctor mentioned he saw depression along with

achalasia, hard to tell which comes first. Even though my kids were preschool

and early elementary when I had surgery, they still seem to feel fear when I was

at my worst. If not for our own well-being, I think it is important to not

scare or worry family if you are ill. Many people do avoid surgery, and that is

certainly their choice, but to me it is devastating on the rest of the family

and can lead to resentment on their part, if you just try to suffer through

life, not eating, or eating odd things, or sleeping in odd places, when there is

a strong possibility surgery will help. Of course there are good reasons to

avoid surgery, especially if you are older or have other significant health

issues. Not sure how I got on that tangent, maybe because you have 4 kids.

Sandy

>

> I was also recently diagnosed with A. This was frustrating for me since I

> have always been a healthy person. I don't drink or smoke. I exercise

> nearly everyday. I have always eaten nutritious meals. Now I have a disease

> that may or may not be " fixed " . I always wanted to be a good mom. I have

> four children and Achalasia makes life difficult and brings on much

> disappointment. But, our trials make us and those around us stronger if we

> let them and do the best we can. Keep smiling!

>

> Right now, I would like to list some symptoms that I have or had. When you

> look up Achalasia on medical websites, these symptoms are not listed. In

> addition, the mental and emotional symptoms related to Achalasia are not

> listed.

>

> 1. People with A tend to avoid social situations (since most social

> situations involve food)

> 2. You may start to isolate yourself to avoid embarrassment or worry.

> (Don't do it! Keep busy, otherwise you might get depressed)

> 3. Fear of throwing up in public.

> 4. Inability to speak when food gets stuck.

> 5. Frustration (When you can only take a bite or two, people think you don't

> like their food.)

> 6. NCCP (non-cardiac chest pain) or Lower esophageal sphincter (LES) spasms

> that are freakishly painful, even in the middle of the night.

> 7. The thought that there is no final cure or solution to Achalasia is

> scary...my first thought was, " I think I will just starve myself! Why live

> if you can't eat? " I'm over that now.

> 8. Feeling of worthlessness since you may not be able accomplish or

> participate in activities or duties that you used to (because of lack of

> energy or frequent illness).

> 9. More frequent colds, flus, and illness. I don't know why...(I know I

> can't take pills easily, when I have a bad night-time cold, I can't sleep

> and then I don't get better, I get worse.)

> 10. ANGER, I was so mad for a while because I felt like opportunities and

> control in my life was being taken away.

> 11. Chocolate goes down the best, no joke (for me anyways)

>

> My advice:

> Some people have been " fixed " so keep some hope and try hard to remain

> positive. Pray for guidance. Surround yourself with compassionate people.

> Keep busy. Research. This group has the most information and I

> found answers by googling!!!

[Guest guest]

Nice post, Marci.

Welcome to the group.

notan