RE: Stream of consciousness about why I stay in this group.

[Guest guest]

,

What a wonderful message about supporting others and giving and receiving help!

You have such a gentle way with words.

You are right on about how great it is that people respond to those things they think they can do some good.

I signed onto this group, because I couldn't find any group for people suffering from dysphasia, stemming from Nissen fundoplication surgery.

I read the posts, and so many of the symptoms seemed eerily similar.

At firsts, the doctors didn't believe me or told me to "live" with not eating much or told me it was all in my head.

Turns out, after all, I do not have achalasia, even though my symptoms are very similar, and I suffer from mild to severe spasm pains.

My LES is not relaxing to let food in because my fundoplication surgeon screwed up big time, and then when I thought he loosened it, I was told last week by Dr. Rice at CC that it looks like they went in and snipped one stitch and called me all better, though I wasn't.

I'm sorry, I'm rambling here.

But I wanted to say that I realize that it may not be appropriate to respond to some posts, since I don't have the same exact diagnosis as you all.

But I always feel like I do understand much of what you guys have gone through, and I try to be sensitive to only offering love and support to others.

I know what it's like to (gag) regurgitate.

Ach!

I know what it's like to have food sitting in your esophagus, feeling that awful pressure.

I know what it's like to have chest pains so bad you think you might be having a heart attack and wondering, do I need to call 911?

The people on this board will come and go, but the feelings of love, help and reassurance will stay forever.

Jan in Northern KY

[Guest guest]

So beautifully said ! Your post actually brought tears to my eyes!

I'd like to take it all in and just move on to the next post, but I just

needed to say how much you have helped me through some tough times with

your deep and meaningful posts, and like you've said before, we come to

this board and it's like you're all in the next room sometimes we're so

close!

It's good to know you're always there, and I agree with you, the " fresh

out of surgery " counselors come in and take their stand at the post and

unfortunately, there will be others who will follow, but hopefully by

continuing to post, we somehow help someone out there in some special

way and it's always nice to hear how we've made a difference in

someone's life!

We're a really special group, one that I'm proud to be a part of, and I

just wanted you to know that you've made a difference in my life.

I love ya! :-)

Sandi

Stream of consciousness about why I stay in this

group.

I just have to speak up as a member of this board who had surgery nearly

3 years ago. I am still doing great with my myotemy and partial wrap.

I remember the first night I found this group. I had just been

diagnosed and was looking for information, anything on the web to make

me feel better and be better informed about my upcoming surgery. You

can read articles about Achalasia until your are blue in the face, but

nothing replaces talking to someone else who has walked in your shoes.

Like so many other people have stated in this group, I cried big tears

as I read story after story of people who were like me. I had had

ENOUGH of feeling like I was the ONLY one with problems like I had,

coupled with years of the wrong doctors who ALL thought I was either

making it up, wanted attention (sick!!!), or that I needed some nice

medicine to calm me down. I found this board and the right doctors all

in the same week. What a week that was. I remember people in here

writing to me off list with their advice and personal stories, but

mostly I remember the empathy and caring that I received as I joined

this group. I felt that everyone I knew on the board was actually WITH

ME when I went into that operating room with my doctors. I couldn't

wait to get home and post back to the list my stories of my surgery, how

I felt, what my first food was like, my effects after surgery, etc. It

was sooooooooo reassuring to find others who had already been through

what I was going through. I don't know how I would have made it without

this board. I knew that I would continue to read in here for a LONG

time to offer support to anyone I could, as I knew what that support had

meant to me. AND it feels so good to help someone else. A bunch of

people with serious problems and issues needs to be balanced with hope

from those who have found answers. It keeps you going when you are down

and confused about what to do next. I needed to know that others were

suffering like I was, yes, but I also needed to know that there were

others who had gone through the scary business of surgery and recovery.

I needed to hear from them what to expect, what was " normal " for them,

and how their lives had moved on. I don't post AS often as I used to

because there are others who have moved into the " fresh out of surgery "

counseling positions. But I am still here reading and post when I feel

that I really have something to offer to someone that can give them hope

or encouragement or validation. It's like life. It's cyclical. The

people who are fresh from surgery assume the position of being the

biggest support for those immediately coming out of surgery or facing

surgery. Those of us who have been " out of surgery and doing well " for

a long time either move on or choose to stay. Some don't feel that their

presence here is crucial anymore for someone else can be the active

voice now. They are busy, they move on. That's normal. I, however, am

still somewhat addicted to reading this list. There are periods where I

don't read for a week or so, but I always come back. I know I will

always have A. Though I feel great now, I know tables could turn. I

don't live in any fear or dread, I enjoy every day as it comes. I am

thankful for my return to health. But there is something more here.

People who are touched by this disease have special wings, I think. The

things we do to cope and stay happy teach us humility, compassion, and

empathy. We are actually stronger for this disease in the end. It may

not seem like it when we are having a really bad day or moment. But in

the end, I believe we are all stronger. I stay because I like the

people in this group, because I care about all of you, and because I

want to help others. I welcome all of the new voices and " angels " who

speak through this forum. It never fails, someone out there ALWAYS

helps someone else in need in this group. We don't all have to answer.

We don't all have to write back. If you agree with what someone else

has said and think they did a great job of saying it, it's ok to just

take it in and move to the next post. Imagine if we ALL kept posting

vigorously!!! How many posts a day would that be????? None of us could

manage to read all of that. It's interesting to watch the level of

posts rise and fall over time. It's interestng to watch people

disappear and reappear over time. is one who does that. HI !

Notan is to me the most genius researcher that ever lived, and a voice

of reason. Debbie is so caring and thorough with her research. Jan is

so open and warm and friendly. Patty from Houston and I had the same

doctor. That's always fun to compare notes! Sandy from So. California

is funny as all get out! I've met and Sandi from ca. and Tanja in

person. There have been so many people who have helped me, I could go

on and on. Collectively, we are SO blessed to have each other. Just

had to say this! Hope you are all having a great day. One thing is

certain...if you ever need anything, ask someone in this group! Someone

always comes through!

in Houston

> > Hello

> >

> > In reference to your comment:

> > However, I don't see this board as a constant reminder to my

> hell. I see it

> > as a group of people that helped me through a very difficult

> time. I also

> > make sure I constantly keep up with the posts and new people to

> make sure those

> > " newbies " read about sucessful stories. When I first came to the

> board there

> > was a lot of negative posts on how badly people were doing and 2nd

> myotomies

> > because the first one didn't work or only worked for short periods

> of time. So

> > I think it's important for people to see success stories. Giving

> someone else

> > just a little bit of hope will be worth the " reminder. " This

> group has

> > become a family to me and I enjoy communicating with them.

> Besides, I'm not

> > " cured " and achalasia will always be a part of me.

> > , thank you. You said this so well. It is people like

> > you who make this board what it is.

> >

> > Thank you for staying to show your appreciation to others.

> >

> > Hugs

> > Maggie

[Guest guest]

- You always say the most beautiful things here!! Your support

for us when Chet was going through this was above and beyond! I hope

that all is well in Houston. Are you enjoying the nice HOT weather?

WINK WINK!!

Sandi - I really admire you for your dedication to this board! You

were here when I was looking for help for Chet, and you continue to

be here almost two years later. This is sure a great group of people!

Hugs

> > > Hello

> > >

> > > In reference to your comment:

> > > However, I don't see this board as a constant reminder to my

> > hell. I see it

> > > as a group of people that helped me through a very difficult

> > time. I also

> > > make sure I constantly keep up with the posts and new people to

> > make sure those

> > > " newbies " read about sucessful stories. When I first came to

the

> > board there

> > > was a lot of negative posts on how badly people were doing and

2nd

> > myotomies

> > > because the first one didn't work or only worked for short

periods

> > of time. So

> > > I think it's important for people to see success stories.

Giving

> > someone else

> > > just a little bit of hope will be worth the " reminder. " This

> > group has

> > > become a family to me and I enjoy communicating with them.

> > Besides, I'm not

> > > " cured " and achalasia will always be a part of me.

> > > , thank you. You said this so well. It is people like

> > > you who make this board what it is.

> > >

> > > Thank you for staying to show your appreciation to others.

> > >

> > > Hugs

> > > Maggie

>

>

>

>

>

>

[Guest guest]

Over the years, we have had people in here who THOUGHT they might

have A who hsve found out that they didn't. WE got to know them and

when they were trying to decide if they would leave or stay, some of

them stayed because bottom line...it doesn't matter what your

diagnosis is. If you symptoms are similar to what we go through, we

understand each other. And perhaps some people would stay with this

group just because of the empathy while going through ANY difficult

situation...whatever that might be, even though they are eventually

cleared of A. It doesn't matter. All that matters is empathy and

caring and either you find/give it, or you don't. Joan, we welcome

you no matter WHAT twists your road (or your esophagus, yuk, yuk,

yuk) takes!

XX,

> Jan - you too have a lovely way with words and I second your

sentiments entirely! Please stay with us - you are so good for us !

> Hugs,

> Joan

> Re: Stream of consciousness about why I stay

in this group.

>

>

> ,

> What a wonderful message about supporting others and giving and

receiving help!

> You have such a gentle way with words.

> You are right on about how great it is that people respond to

those things they think they can do some good.

> I signed onto this group, because I couldn't find any group for

people suffering from dysphasia, stemming from Nissen fundoplication

surgery.

> I read the posts, and so many of the symptoms seemed eerily

similar.

> At firsts, the doctors didn't believe me or told me to " live "

with not eating much or told me it was all in my head.

> Turns out, after all, I do not have achalasia, even though my

symptoms are very similar, and I suffer from mild to severe spasm

pains.

> My LES is not relaxing to let food in because my fundoplication

surgeon screwed up big time, and then when I thought he loosened it,

I was told last week by Dr. Rice at CC that it looks like they went

in and snipped one stitch and called me all better, though I wasn't.

> I'm sorry, I'm rambling here.

> But I wanted to say that I realize that it may not be appropriate

to respond to some posts, since I don't have the same exact diagnosis

as you all.

> But I always feel like I do understand much of what you guys have

gone through, and I try to be sensitive to only offering love and

support to others.

> I know what it's like to (gag) regurgitate.

> Ach!

> I know what it's like to have food sitting in your esophagus,

feeling that awful pressure.

> I know what it's like to have chest pains so bad you think you

might be having a heart attack and wondering, do I need to call 911?

> The people on this board will come and go, but the feelings of

love, help and reassurance will stay forever.

> Jan in Northern KY

>

>

>

[Guest guest]

Whoops, that was Jan, not Joan who said she stays in here even

without the A diagnosis! I can't read!!! Anyway, it doesn't matter

WHO finds solace here. Anyone who finds solace is welcome by all, I

am sure.

> Jan - you too have a lovely way with words and I second your

sentiments entirely! Please stay with us - you are so good for us !

> Hugs,

> Joan

> Re: Stream of consciousness about why I stay

in this group.

>

>

> ,

> What a wonderful message about supporting others and giving and

receiving help!

> You have such a gentle way with words.

> You are right on about how great it is that people respond to

those things they think they can do some good.

> I signed onto this group, because I couldn't find any group for

people suffering from dysphasia, stemming from Nissen fundoplication

surgery.

> I read the posts, and so many of the symptoms seemed eerily

similar.

> At firsts, the doctors didn't believe me or told me to " live "

with not eating much or told me it was all in my head.

> Turns out, after all, I do not have achalasia, even though my

symptoms are very similar, and I suffer from mild to severe spasm

pains.

> My LES is not relaxing to let food in because my fundoplication

surgeon screwed up big time, and then when I thought he loosened it,

I was told last week by Dr. Rice at CC that it looks like they went

in and snipped one stitch and called me all better, though I wasn't.

> I'm sorry, I'm rambling here.

> But I wanted to say that I realize that it may not be appropriate

to respond to some posts, since I don't have the same exact diagnosis

as you all.

> But I always feel like I do understand much of what you guys have

gone through, and I try to be sensitive to only offering love and

support to others.

> I know what it's like to (gag) regurgitate.

> Ach!

> I know what it's like to have food sitting in your esophagus,

feeling that awful pressure.

> I know what it's like to have chest pains so bad you think you

might be having a heart attack and wondering, do I need to call 911?

> The people on this board will come and go, but the feelings of

love, help and reassurance will stay forever.

> Jan in Northern KY

>

>

>