Re: Really struggling

[Guest guest]

Hi Kay,

It sounds like you're really having a tough time. I do understand - this disease

is so isolating and the weakness it causes really gets into your head. You

really are blessed though from what you describe with the support of your

husband and a fulfilling business. It's hard to know what to say except to try

and stay positive - as you seem to know our outlook has a huge impact on our

physical health.

Since you've had so many procedures this year, perhaps your E will calm down

with some rest and provide you with relief over the coming months. I know for

myself after having an endo or botox, I have difficulty for a time until things

settle down. That will be my prayer for you. Please reach out anytime.

Kim, Atlanta

________________________________

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

achalasia

Sent: Thursday, December 1, 2011 5:14 AM

Subject: Really struggling

 

Hi everyone. I don't post often on here but regularly keep up with reading

everyone's stories. It really helps to know I am not alone. However right now I

feel very alone. I have spent much of this year having dilitations (on the upper

and lower sphincter), botox and then a crychopharingeal myotomy. Now again I am

struggling as the lower end has tightened again. the heller myotomy is open I

just have scar tissue that is causing tightening. I have a great consultant, but

have had so much surgery this year and havn't worked for 6 months. I work as a

gardener and build green roofs, all self employed and working with my husband. I

really don't want to be reduced to office work as it is the physical outdoor

stuff I love. My head can work out all the things I have to be thankful for and

all the jobs I can do within the business but I am just so sick and tired of it

all. I have had this condition for 21 years and right now feel that it has won,

it has beaten

me. I don't need advice on treatment just some hanging in there stuff. Sorry

guys I just feel so low. love to you all Kay, England

[Guest guest]

Kim, thank you so much for those kind words. I feel a little better actually for

just getting my feelings off my chest. I don't want my friends to just think I

am winging! I am so thankful for all the good things I have and did some

pottering in the garden today, taking cuttings which lifted my spirits. I just

feel exhausted and am going back to bed with a book now. It has been a tough

year and right now just seems relentless. Thanks so much for your support, it is

much appreciated. best wishes Kay

>

> Hi Kay,

> It sounds like you're really having a tough time. I do understand - this

disease is so isolating and the weakness it causes really gets into your head.

You really are blessed though from what you describe with the support of your

husband and a fulfilling business. It's hard to know what to say except to try

and stay positive - as you seem to know our outlook has a huge impact on our

physical health.

>

> Since you've had so many procedures this year, perhaps your E will calm down

with some rest and provide you with relief over the coming months. I know for

myself after having an endo or botox, I have difficulty for a time until things

settle down. That will be my prayer for you. Please reach out anytime.

> Kim, Atlanta

>

>

> ________________________________

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

> achalasia

> Sent: Thursday, December 1, 2011 5:14 AM

> Subject: Really struggling

>

>

>  

> Hi everyone. I don't post often on here but regularly keep up with reading

everyone's stories. It really helps to know I am not alone. However right now I

feel very alone. I have spent much of this year having dilitations (on the upper

and lower sphincter), botox and then a crychopharingeal myotomy. Now again I am

struggling as the lower end has tightened again. the heller myotomy is open I

just have scar tissue that is causing tightening. I have a great consultant, but

have had so much surgery this year and havn't worked for 6 months. I work as a

gardener and build green roofs, all self employed and working with my husband. I

really don't want to be reduced to office work as it is the physical outdoor

stuff I love. My head can work out all the things I have to be thankful for and

all the jobs I can do within the business but I am just so sick and tired of it

all. I have had this condition for 21 years and right now feel that it has won,

it has beaten

> me. I don't need advice on treatment just some hanging in there stuff. Sorry

guys I just feel so low. love to you all Kay, England

>

>

>

>

>

[Guest guest]

Kay wrote:

>

> ... the heller myotomy is open I just have scar tissue that is causing

> tightening.

>

If I could solve medical problems scarring would be high on the list.

Not only would it help get rid of one of the things that causes problems

and fears for people with achalasia but for many conditions. It seems

strange that so little is known about how to prevent this problem.

Scarring is such a common problem in so many medical conditions. In time

the scarring problem for you may settle down. Some of the esophagectomy

members of this group came through times of scarring problems which

seemed almost hopeless. But, if it doesn't settle down...

> ... I really don't want to be reduced to office work as it is the

> physical outdoor stuff I love. ...

>

Maybe it is time to change what you want. Maybe learn to love something

else. I didn't have a choice. I can not go back to my old job with my

feet the way they are. I worked there because I care for the people

there. Next week I will be at my new job. I don't feel ready to get to

work, but they need me and I will be working for my son. So, I care

enough to make it work, and I am sure I can. I hope you can get back to

what you love. Love and dedication can be good things. Dedication is a

kind of yoke though. Some yokes are a joy and honor. Some yokes are

heavy and rough and wear you down and tear you up. So, how is your love

and dedication treating you? Ever know someone that was dedicated to

being an actor or musician and you knew it was not meant to be? Bad

yoke. Hopefully your situation will improve at some point and you won't

have to change your job, but don't despair and fear it if you do. I

believe that dark tunnel also leads to light.

> ... I am just so sick and tired of it all. I have had this condition

> for 21 years and right now feel that it has won, it has beaten me. I

> don't need advice on treatment just some hanging in there stuff. Sorry

> guys I just feel so low.

>

With 21 years behind you know how to endure, and you aren't completely

broken yet. Know how to tell if you are? If you get up in the morning

and when you get to your shoes you spend the rest of the day looking at

them but they never get onto your feet, you are completely broken, and

every one will know it without you telling them. Ever feel like that? I

have had days were there was more time spent looking at the shoes than

there should have been, but they did finally end up on my feet, and

though I felt broken I was able to fool the world by doing the putting

one foot in front of the other thing, with my shoes on. Another way to

know is if you believe it does not matter if anyone cares or not, and

that caring is just an illusion. I know this darkness. Not because I

ever believed it, but because even though I believed better it felt like

it was that way. I think that darkness is the worst condition in life.

It is good to see that you believe better too. You believed we would

care and that it would matter. We do care! It is real. I can't think of

any better " hang in there stuff " than that, except that you care and you

know you care too. That will get your shoes on.

> ... love to you all Kay, England

Believing in love, and love back to you. Achalasia has not won.

notan

[Guest guest]

Notan, thankyou from the bottom of my heart for taking the trouble to write so

much. My shoes are still going on and I knew people here would care. I know that

people will have read my note and cared even if they wern't able to reply, just

as I so often do. That knowledge alone helps so much. Your wise words about my

job have put things in perspective too. At the end of the day running my own

business alongside my husband brings me great joy and I will hold onto that,

whatever role I play.

Thankyou again and I wish you well as you start back at work. Kay xx

> >

> > ... the heller myotomy is open I just have scar tissue that is causing

> > tightening.

> >

>

> If I could solve medical problems scarring would be high on the list.

> Not only would it help get rid of one of the things that causes problems

> and fears for people with achalasia but for many conditions. It seems

> strange that so little is known about how to prevent this problem.

> Scarring is such a common problem in so many medical conditions. In time

> the scarring problem for you may settle down. Some of the esophagectomy

> members of this group came through times of scarring problems which

> seemed almost hopeless. But, if it doesn't settle down...

>

> > ... I really don't want to be reduced to office work as it is the

> > physical outdoor stuff I love. ...

> >

>

> Maybe it is time to change what you want. Maybe learn to love something

> else. I didn't have a choice. I can not go back to my old job with my

> feet the way they are. I worked there because I care for the people

> there. Next week I will be at my new job. I don't feel ready to get to

> work, but they need me and I will be working for my son. So, I care

> enough to make it work, and I am sure I can. I hope you can get back to

> what you love. Love and dedication can be good things. Dedication is a

> kind of yoke though. Some yokes are a joy and honor. Some yokes are

> heavy and rough and wear you down and tear you up. So, how is your love

> and dedication treating you? Ever know someone that was dedicated to

> being an actor or musician and you knew it was not meant to be? Bad

> yoke. Hopefully your situation will improve at some point and you won't

> have to change your job, but don't despair and fear it if you do. I

> believe that dark tunnel also leads to light.

>

> > ... I am just so sick and tired of it all. I have had this condition

> > for 21 years and right now feel that it has won, it has beaten me. I

> > don't need advice on treatment just some hanging in there stuff. Sorry

> > guys I just feel so low.

> >

>

> With 21 years behind you know how to endure, and you aren't completely

> broken yet. Know how to tell if you are? If you get up in the morning

> and when you get to your shoes you spend the rest of the day looking at

> them but they never get onto your feet, you are completely broken, and

> every one will know it without you telling them. Ever feel like that? I

> have had days were there was more time spent looking at the shoes than

> there should have been, but they did finally end up on my feet, and

> though I felt broken I was able to fool the world by doing the putting

> one foot in front of the other thing, with my shoes on. Another way to

> know is if you believe it does not matter if anyone cares or not, and

> that caring is just an illusion. I know this darkness. Not because I

> ever believed it, but because even though I believed better it felt like

> it was that way. I think that darkness is the worst condition in life.

> It is good to see that you believe better too. You believed we would

> care and that it would matter. We do care! It is real. I can't think of

> any better " hang in there stuff " than that, except that you care and you

> know you care too. That will get your shoes on.

>

> > ... love to you all Kay, England

>

> Believing in love, and love back to you. Achalasia has not won.

>

> notan

>

>

>

>

>

>

[Guest guest]

Hi Kay,

 

Try to stay positive, I know you can do it.   I am sorry you are having so

much trouble.  I have had this disease for 33 years.  I am currently dealing

with an ulcer, which I do not want to deal with.  I sometimes have upper E

spasms and I take Procardia Extended release for this.  It really helps.  I

know for a fact that Stress is one of the biggest factors in  this disease. 

I take B-12 and B-Complex everyday to help as these are vitamins that help our

nerves and mental state.  They really seem to help. 

 

I try to always remember that there is someone else that is in more distress

than I am and I am truly thankful to be alive.  I put my faith and trust in God

and have lots of people that pray for me.  I know that without a doubt that if

it were not for my belief in GOD that I would not be here.  I had problems

breathing in surgery when I had my myotomy and know that there is a reason I am

here on earth.  Yes sometimes, it is hard to stay positive and watch everyone

else eat all the things you cannot.  But I do, and I have learned to not let

it bother me.  I have a 21 month old grandson and he is the apple of my eye,

and I am not ready to to say this is it.  I agree with Notan, his response was

so inspirational, he seems to always know what to say to bring back your sanity

and ground us.

 

Just follow your doctors orders and stay in touch with the group, they will all

give you words or encouragement.  Don't give up, you can get back to what you

love.  After so many surgeries it may be a long recovery for you and you will

not be able to get back out and do what you love overnight.  I know it is hard

to be patient; but hang in there it will happen. 

 

Take care and God Bless

 

Sharon Cline

 

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

Subject: Really struggling

achalasia

Date: Thursday, December 1, 2011, 4:14 AM

 

Hi everyone. I don't post often on here but regularly keep up with reading

everyone's stories. It really helps to know I am not alone. However right now I

feel very alone. I have spent much of this year having dilitations (on the upper

and lower sphincter), botox and then a crychopharingeal myotomy. Now again I am

struggling as the lower end has tightened again. the heller myotomy is open I

just have scar tissue that is causing tightening. I have a great consultant, but

have had so much surgery this year and havn't worked for 6 months. I work as a

gardener and build green roofs, all self employed and working with my husband. I

really don't want to be reduced to office work as it is the physical outdoor

stuff I love. My head can work out all the things I have to be thankful for and

all the jobs I can do within the business but I am just so sick and tired of it

all. I have had this condition for 21 years and right now feel that it has won,

it has beaten

me. I don't need advice on treatment just some hanging in there stuff. Sorry

guys I just feel so low. love to you all Kay, England

[Guest guest]

Kay, I am sorry that you have been so low. I want you to know that this group is

what keeps me positive. so many of them have suffered longer than i have  as i

was not diagnoised until after i had had it many years. just remember,(this is

what i tell myself). " This too shall pass.... I will not always be in this

place. " that thought helps me " check up " and get my faith out there. I dont know

why we have A. but i tell myself, if this is the worst thing that ever

happens... this " aint " nothing..  I can do this! My faith in God has really

helped me not to give up. I almost (literally) starved to death this year and

suffered. i am now on a better road.. and thankful.. keep your chin up and

remember there are people here that care about you even though we have never

met.. keep in contact with us and find some joy in something every day.  Kim

Ellen