Re: My secret life...was/Helping family deal with it - Was: My brother and I both have Achalasia

[Guest guest]

Sandi,

Thanks for sharing your story with us. I'm so glad that you are on

the road toward recovery and feel very special to be part of this

group that you have been so open with.

It takes stories like yours to sometimes make others (me

specifically) realize how lucky I am to be dealing with A with

someone so special and supportive. As " embarrassed " as I felt when

eating in public, he never was. I was embarrassed about my bottles

of water, he said " who cares what people think. " And I'll never

forget how one night I had a choking episode and had to sit up for a

while. He let me lean up against him and sat up with me and

said, " you're not going through this alone anymore. " Boy did I cry

after that!

I'm very sorry you had to go through everything alone...until you

found us that is.

I truly admire you for starting your life over.

in NYC

PS: Funny you mention you haven't been around lately; I HAD

noticed...lol. In fact, thought of it the other day. I remember you

were debating on getting a diliation (sp). What ever happened?

[Guest guest]

Thank you Jerry for

always coming up with

the most thought provoking words. You always know how to put it all together so

beautifully when it just doesn’t even make sense to me and it sounds like

you have given this some extensive thought.

For anyone who does

not know me more personally, I haven’t shared this with many of you here

in the group, but this is an area of my “existence with achalasia” that has been the most difficult for me. I have never shared this part

of myself with the group as a whole. Many of my closer friends here in the

group know, but because of what you have said here Jerry/notan,

I feel like I can finally share this with the group. This is not easy for me to

do but is probably the area of dealing with achalasia

where I have needed the most support…but the one area that I have not

been able to talk about.

Reading how supportive many of the

husbands/wives and partners of members here in this group have been has always wow’d me and it wasn’t until

after having surgery almost 2.5 years ago that I realized that I was missing a

very important and integral part of my life. My husband thought of my surgery

as a complete fix and thought he would never have any reason to ever hear about

achalasia again and I began to drift further and

further away from him. It was about this same time that I had found this group,

which didn’t make matters any better. He didn’t like me getting

messages from the group and really didn’t want to have anything to do

with this disease of mine anymore. I guess he thought that I was dwelling on it

too much and wanted me to go on and live a happy and normal existence now that

I had been “cured” (so to speak) but the thing is I wasn’t

cured, and when I found this group, it was the happiest day of my life. I had

finally found a family who understood…and he did not.

It was 6 months

after I had my surgery and I was doing really well, when I decided it was time

to go out and celebrate eating in a restaurant. I had not been able to eat

comfortably at a restaurant for YEARS so this really meant the world to me.

Knowing that my husband knew this and had been through this with me from the

beginning, it was very important to be able to share this “MOST VERY

SPECIAL EVENT” in my life with my husband and my family. My husband refused

to celebrate with me and I believe that it was at this point that I pushed him

almost completely out of my life and refused to share

“my secret achalasia life”

with him anymore. He no longer had a right to know what was going on in my life

and I would not discuss ANY part of my “achalasia”

with him, and would not even tell him when I was going to see any of my

doctors. I no longer trusted him. This has all resulted in a series of mental

health issues for me that have been going on for the past 2 years. I turned to

my doctors for all my support and love issues that I was so void of, and now 2

years later, I am only just beginning my road to recovery.

My recovery:

Without getting into too much detail, in

my case, this has meant moving on, going to school and starting a business of

my own so that I could prepare myself

emotionally and financially and begin the next stage of my life’s journey

being completely self sufficient. Only by doing this, have I been able to open

myself up to finding someone who could allow me to fill this emotional void of

mine.

Although I am still

in the process of getting my new business off the ground and am still in the beginning

stages of ending my marriage, I am very happy to say that I have found the most

amazing man who fulfills me emotionally, physically, and spiritually and to

tell you the truth, if you have noticed that I have been out of touch with the

group lately, it is because I am very busy moving on with my life, preparing to

get a divorce, beginning my new travel business and living the most wonderful

fairytale life at the moment. I love fairytales. They may be filled with

darkness and gloom, but they always have the happiest endings.

Like you have said

here Jerry…

As you can see there are

a lot of things that can be going on in the minds of those around us. You may

even be able to think of more things. They may need support as much as we do.

Some relationships are going to fail even without something like achalasia.

Some relationships will be hard to save once something like achalasia comes

into it. Some relationships that could fail because of achalasia may be savable

if one is wise enough to do what is needed. Some relationships will even become

better after achalasia. Some may even see achalasia as a blessing in the end.

The ball is in our court, what should we do?

I don't have the answers for the questions. I hope discussing and thinking

about them will help. It may help those around us to think about these kind of

questions too. If we are going to leave things around for others to read, maybe

we should also leave some information about how chronic diseases effect those

around a patient and their relationships.

I don’t even

begin to know where I fit into the following, but I always go with what feels

right…and I know that love, openness, honesty and emotional support is

essential to my well being. Maybe I have failed in some areas, or maybe it was

just never there to begin with, or maybe it is just too difficult to pick up

the broken pieces and figure out how to put them back together…or maybe

some of the pieces are just missing or beyond repair.

I suspect that this is an

area we, (all of us as a group), should be giving more thought and effort to

learn and share what wisdom we can find. Achalasia for some is found quickly

and treated and some minor adjustments in life are made. In that case the

reactions of others and the effect on others may not be very important.

However, achalasia is often slow to be diagnosed, a crisis for patient, family

and others, and results in chronic problems that interfere with and stress

relationships. In this case, achalasia is a lot like other major chronic

illnesses. It is well know that chronic illnesses can stress relationships.

Others in those relationships also suffer, or act, and think, in ways to avoid

suffering. These people may need help to deal with the suffering, or even to

accept some suffering, so they can fulfill their roles in the relationship. How

can we help these people? I am sure of one thing, for many achalasia is not

just about us and our needs. It would be nice if we all had the luxury to just

let it be about us and have everyone be ok with that, but those that feel it is

just about them may pay a high price in their relationships, that perhaps could

be avoid.

Thanks for writing

this notan. I think it’s an important issue to

be able to discuss and it isn’t an easy one.

Sandi in no CA

Empathy is pain. In

order for people to be empathetic with us they need to feel the pain, or they

will seem cold. Some people are empathetic for a while and then block out or

become numb to the pain. Others have ways to block the pain from the beginning.

What may have made these people strong in other situations, for which we may

have admired them, now makes them seem weak to us and unable to help us.

How much empathy should we expect? When and for how long should we expect it?

How can we help them with the pain?

Ashamed of the

illness. Ever feel

embarrassed or ashamed when eating in public? Others may also feel

embarrassment and shame because of our illness? Whether in us our them I think

this is due to not being in acceptance of our illness. We have problems with

these feelings and so do they. They also need time, just as we do, to come to

terms with our illness. How much time is enough? Should we discuss this with

them? If so, when?

Grief follows loss. Those around us may be feeling a loss

because of our illness. The loss of, the happy people we used to be, the meals

we used to share, the places we use to go, their ability to make things right

for us, and the old view of our future. Their loss may be more profound than we

would think. What seems to be a problem dealing with our problem may be a

problem with them dealing with their loss. How can we help them with their

loss?

Intruder alert! Achalasia can be like an unwanted

intruder in a relationship. Not only can it bring a lot of changes with it

including: doctors, tests, a special diet, and support groups. It may seem to

others that the intruder, and those the intruder brought with him, are getting

too much of our attention. How can we help them know that we are just as

interested in them as before and that we want to give them the attention we

can?

Can't fix a problem,

blame the person closest to it. The intruder came into the relationships through us. This

makes us a target for blame, even though we don't deserve it. Sometimes we even

try to blame ourselves, thinking of things we may have done in out past and

wondering if they caused achalasia. Is it any wonder that others are also going

to have these thoughts about us. If nothing else, it causes hurtful doubts.

Education may help us and those around us. Is education enough? Can we do more?

Normal people have

crazy thoughts. Crazy may not be the best medical or PC

term, but you get the idea. In difficult times our thoughts and feelings, and

theirs, may not seem correct and " rational " , but many others going

through the same situation would have the same irrational thoughts and

feelings. Though irrational they may be normal, even if not universal, for the

situation. If the table was turned, it could be us thinking crazy thoughts

about them. Time helps. What else helps?

Don't know how to

play the part. When

we get a new role in life we don't always know how to play the part, so we pick

another role to hide our incompetence. People may feel that they are not good

with emotions and suffering, so they avoid the role that requires it and play a

role like the tough guy who can ignore problems and just say " deal with

it " to play the part. They may actually feel bad that they are not playing

a better role, but the role they are playing will not let them admit that. What

to do?

notan

[Guest guest]

Hi ,

Thank you for your kind words.

I am still at a loss as to what to do about having a dilatation. I went

to see my GI doc a few weeks ago, and he wants me to have a second

opinion. Apparently my surgeon is against my having a dilatation and

according to what my GI doctor told me, my surgeon told him that I would

perforate, so...I need a second opinion, which means looking for another

GI doctor to go to for a second opinion. I would like to go to TCC,

however, if I do this, my insurance will only pay the out-of-network

costs, and while my portion is only 10%, this could be a lot, but just

anywhere I go, other than to my own GI doc, I will be going

out-of-network.

I don't know what all I should expect if I went to TCC for a second

opinion. I know they want to do all the procedures over again, i.e.,

barium swallow, manometry, 24 hr ph study, endoscopy and all, but would

they just go in and do the dilatation at the same time I wonder???? I

like to have choices and I want to be the one to decide if I have the

dilatation or not...after I have the endoscopy, but don't they just

decide while they are in there if I need it or not? This is what really

bothers me.

10% out of pocket expenses could get very costly if I ended up in the

hospital at TCC for a perforation, so I am just at a loss at the moment

as to what to do. At the moment doing nothing seems to be working well

for me. I have been having more spasms lately and notice more difficulty

getting food to go down, but I am still managing. Another problem that I

will be facing is the possibility of not having insurance. Hopefully I

will be able to afford it when I get my business rolling, but on the

other hand, maybe I should be making this my top priority while I still

have benefits, but I just don't even want to think about it.

Gayle...I can't remember what you had said about Dr. Snape in San

Francisco. Did you like him??? He is one of the Dr's that I was referred

to by my GI doc, but my GI doctor told me to go where I felt most

comfortable, and TCC was it. The doctors in San Francisco are just as

out-of-network as TCC, so it really doesn't matter much except for the

added airfare.

Thank you again for thinking of me. I guess I should be making my

health more of a priority...on that note; I need to go to the pharmacy

now to pick up my BP meds.

Good to hear from you and I am so happy for you that you have such a

wonderfully supportive man in your life!

It's a new feeling for me...I LOVE it! :-)

Sandi in No CA

Re: My secret achalasia life...was/Helping family

deal with it - Was: My brother and I both have Achalasia

Sandi,

Thanks for sharing your story with us. I'm so glad that you are on

the road toward recovery and feel very special to be part of this

group that you have been so open with.

It takes stories like yours to sometimes make others (me

specifically) realize how lucky I am to be dealing with A with

someone so special and supportive. As " embarrassed " as I felt when

eating in public, he never was. I was embarrassed about my bottles

of water, he said " who cares what people think. " And I'll never

forget how one night I had a choking episode and had to sit up for a

while. He let me lean up against him and sat up with me and

said, " you're not going through this alone anymore. " Boy did I cry

after that!

I'm very sorry you had to go through everything alone...until you

found us that is.

I truly admire you for starting your life over.

in NYC

PS: Funny you mention you haven't been around lately; I HAD

noticed...lol. In fact, thought of it the other day. I remember you

were debating on getting a diliation (sp). What ever happened?

[Guest guest]

Hi Sandi,

Re: Dr. Snape....I wasn't overly impressed with him because he was " lobbying "

more for me

to undergo a dilation (his speciality) vs pursuing the Heller Myotomy. That

being said, he

is acknowledged to be one of the leading experts for dilation in the Bay Area so

it may be

worth a visit. Since you have all of your medical records, It might make more

sense for

you to see Dr. Patti. before going to TCC. Although I'm still having spasms,

I still think

that having Dr. Patti perform the Heller was the best decision that I made

regarding my

treatment (with your encouragement, Sandi).

Re: your personal situation. I'm so very happy that you have found the love

that you

deserve! Thank you for sharing this with the group.

My big decision of the week is whether or not to return to my toxic work

environment. I

like the stability of the paycheck but I think it will wreak havoc with my

health. I'm leaning

toward not returning. I'm VERY fortunate that my husband is supportive of me

taking

some time away from work to fully recover (I don't think I'm there yet) and find

a job that

will be more fulfilling.

Take good care, Sandi.

Gayle

>

>

> Gayle...I can't remember what you had said about Dr. Snape in San

> Francisco. Did you like him??? He is one of the Dr's that I was referred

> to by my GI doc, but my GI doctor told me to go where I felt most

> comfortable, and TCC was it. The doctors in San Francisco are just as

> out-of-network as TCC, so it really doesn't matter much except for the

> added airfare.

>

> Thank you again for thinking of me. I guess I should be making my

> health more of a priority...on that note; I need to go to the pharmacy

> now to pick up my BP meds.

>

> Good to hear from you and I am so happy for you that you have such a

> wonderfully supportive man in your life!

> It's a new feeling for me...I LOVE it! :-)

> Sandi in No CA

>

> Re: My secret achalasia life...was/Helping family

> deal with it - Was: My brother and I both have Achalasia

>

>

>

> Sandi,

>

> Thanks for sharing your story with us. I'm so glad that you are on

> the road toward recovery and feel very special to be part of this

> group that you have been so open with.

>

> It takes stories like yours to sometimes make others (me

> specifically) realize how lucky I am to be dealing with A with

> someone so special and supportive. As " embarrassed " as I felt when

> eating in public, he never was. I was embarrassed about my bottles

> of water, he said " who cares what people think. " And I'll never

> forget how one night I had a choking episode and had to sit up for a

> while. He let me lean up against him and sat up with me and

> said, " you're not going through this alone anymore. " Boy did I cry

> after that!

>

> I'm very sorry you had to go through everything alone...until you

> found us that is.

>

> I truly admire you for starting your life over.

>

> in NYC

>

> PS: Funny you mention you haven't been around lately; I HAD

> noticed...lol. In fact, thought of it the other day. I remember you

> were debating on getting a diliation (sp). What ever happened?

>

>

>

>

>

>

>

>

[Guest guest]

Thank You Gayle,

Maybe Dr. Snape would be a good choice for me to see since he

specializes in dilatations. It wouldn't hurt to go speak with him

anyway.

Dr. Patti is a surgeon and I am hoping to NOT be in need of a surgeon

ever again, but if I am, I have one that I am very confident in. It's

certainly good to hear that you are satisfied with your decision to have

the myotomy with Dr. Patti. I'm glad you are finally beginning to feel

better and hope to hear that your recovery continues to improve with

time. It's wonderful that you are able to stay home and recover and I

hope that you will find a new and fulfilling career to go along with

your new marriage and your new baby myotomy!

If you would like to get together sometime, let me know! I am only a

hop, skip and a jump away on BART!

Take Care Gayle, and thank you for the response.

Sandi

Re: My secret achalasia life...was/Helping family

> deal with it - Was: My brother and I both have Achalasia

>

>

>

> Sandi,

>

> Thanks for sharing your story with us. I'm so glad that you are on

> the road toward recovery and feel very special to be part of this

> group that you have been so open with.

>

> It takes stories like yours to sometimes make others (me

> specifically) realize how lucky I am to be dealing with A with

> someone so special and supportive. As " embarrassed " as I felt when

> eating in public, he never was. I was embarrassed about my bottles

> of water, he said " who cares what people think. " And I'll never

> forget how one night I had a choking episode and had to sit up for a

> while. He let me lean up against him and sat up with me and

> said, " you're not going through this alone anymore. " Boy did I cry

> after that!

>

> I'm very sorry you had to go through everything alone...until you

> found us that is.

>

> I truly admire you for starting your life over.

>

> in NYC

>

> PS: Funny you mention you haven't been around lately; I HAD

> noticed...lol. In fact, thought of it the other day. I remember you

> were debating on getting a diliation (sp). What ever happened?

>

>

>

>

>

>

>

>