Re: It's been a long time....

[Guest guest]

Steph,

I

feel for you! I’m sorry you are having such a rough time of it. I’ve

been lucky so far…who knows how long that will last!! I’ve recently

starting having problems more lately, could be due to stress, probably is!

Before my 2nd surgery I got very malnourished and weak! I lost 30lbs

and when I went into the hospital Dr. Rice told me I was in terrible shape and

why did I wait for so long!! Ummm prolly because the insurance that I had at

the time was denying the surgery since I had just had one a few months before

that!! I have since developed a very bad immune system!! I am sick every 4-6

weeks (currently sinus, bronchitis, ear infections and strep) 3 times in 3

months. Talk about can’t get a break!!! I was working part time before our

move and took a lot of time off even with only a part time job! I am currently

seeing an allergist/immunologist to see if we can figure it out! I’ve developed

allergies to everything, including antibiotics, I think that’s my problem

now..the one that I can take I don’t think is doing the trick anymore.

Use to be only once every 2-3 months I was sick, not now!!! They even mentioned

SSD to me this last time! Told them I would probably be denied so what’s

the use??? I want to work, but no employer is gonna put up with me taking time

off of work like this!!!

So….I HEAR YOU!!! And I feel your pain!!!

You go right a head and vent!!! Ever need to talk just let me

know!!!

in Arkansas

From:

achalasia [mailto:achalasia ] On Behalf Of achalasiagoaway

Sent: Saturday, January 12, 2008 8:08 PM

achalasia

Subject: It's been a long time....

Well I havent been on here since March, I went

for my 3rd Myotomy in

April of 07 at s Hopkins w/ Surgeon Marohn ref'd by

Ravich GI (both are awesome), it worked really well for a

couple months 1st time in years that I could eat ANYTHING. I since

developed a stricture had one dialation here in FL by my local GI. I

just cant get a break, it looks like the next step for me is an

esophagectomy but my local GI really thinks any surgery in my

condition will kill me. I catch every bug that passes. I guess I am

one of you super rare folks that no number of surgeries, dilatations

or procedures work, I am one scarred chick inside. I have decided to

just do the best I can force the food and wait until it falls. I

developed clinical depression, panic attacks and general anxiety

disorder from this disease ~ so with all the meds I am on I pretty

much stay numb, so I have been to numb to get on this board and

talk.

I was wondering if anyone else feels completely useless now because

of the inability to live a normal life. I am so weak that IF I could

get a job I wouldnt last long, being sick weekly, the meds I am on

flat knock me out. SSD has denied my twice now we go for the hearing

this go )I even had letters from my Senator, Congressman & Governor

to SSD). I just dont know what to do Achalasia has changed my life

forever and nothing is going to change that, just wish the government

would understand that. Believe me I wish I could lead a more

productive life, I have muliple bachelors degrees and love to go to

school and work, so this has been a rough few years.

Just needed to vent, wondered if other people had any tips on how to

get SSD to understand Achalasia. Also wondered how other people cope

with not being able to live life like they used to.

Regards - Steph

[Guest guest]

Thank you . I tell you it sure is hard to cope with that is for

sure, I am also sick right now with cough/cold probably bronchitis so

i started antibiotics today, I am on day 10 of this cold thing I

think. I feel like i need to wear a mask when I leave the house, I

may have to do that at some point. So sis you have an

esophagectomy?

I am stuck at 94lbs. I finally have decided to get rid of my " next

size up " clothes because no matter how hard I try I dont think I will

ever get there. My main worry in life now is SSD, I have a lawyer I

have only seen once, but who knows what will give at this hearing I

dont even know what happens there. I need to re-read my SSD help

books and see what they say, do you want to borrow them, they give

you advice on how to apply to get the most successful result?

>

> Steph,

>

> I feel for you! I'm sorry you are having such a

rough time

> of it. I've been lucky so far.who knows how long that will last!!

I've

> recently starting having problems more lately, could be due to

stress,

> probably is! Before my 2nd surgery I got very malnourished and

weak! I lost

> 30lbs and when I went into the hospital Dr. Rice told me I was in

terrible

> shape and why did I wait for so long!! Ummm prolly because the

insurance

> that I had at the time was denying the surgery since I had just had

one a

> few months before that!! I have since developed a very bad immune

system!! I

> am sick every 4-6 weeks (currently sinus, bronchitis, ear

infections and

> strep) 3 times in 3 months. Talk about can't get a break!!! I was

working

> part time before our move and took a lot of time off even with only

a part

> time job! I am currently seeing an allergist/immunologist to see if

we can

> figure it out! I've developed allergies to everything, including

> antibiotics, I think that's my problem now..the one that I can take

I don't

> think is doing the trick anymore. Use to be only once every 2-3

months I was

> sick, not now!!! They even mentioned SSD to me this last time! Told

them I

> would probably be denied so what's the use??? I want to work, but no

> employer is gonna put up with me taking time off of work like

this!!!

>

>

>

> So..I HEAR YOU!!! And I feel your pain!!!

>

> You go right a head and vent!!! Ever need to talk just let me

know!!!

>

> in Arkansas

>

>

>

> From: achalasia [mailto:achalasia ]

On Behalf

> Of achalasiagoaway

> Sent: Saturday, January 12, 2008 8:08 PM

> achalasia

> Subject: It's been a long time....

>

>

>

> Well I havent been on here since March, I went for my 3rd Myotomy

in

> April of 07 at s Hopkins w/ Surgeon Marohn ref'd by

> Ravich GI (both are awesome), it worked really well for a

> couple months 1st time in years that I could eat ANYTHING. I since

> developed a stricture had one dialation here in FL by my local GI.

I

> just cant get a break, it looks like the next step for me is an

> esophagectomy but my local GI really thinks any surgery in my

> condition will kill me. I catch every bug that passes. I guess I am

> one of you super rare folks that no number of surgeries,

dilatations

> or procedures work, I am one scarred chick inside. I have decided

to

> just do the best I can force the food and wait until it falls. I

> developed clinical depression, panic attacks and general anxiety

> disorder from this disease ~ so with all the meds I am on I pretty

> much stay numb, so I have been to numb to get on this board and

> talk.

>

> I was wondering if anyone else feels completely useless now because

> of the inability to live a normal life. I am so weak that IF I

could

> get a job I wouldnt last long, being sick weekly, the meds I am on

> flat knock me out. SSD has denied my twice now we go for the

hearing

> this go )I even had letters from my Senator, Congressman & Governor

> to SSD). I just dont know what to do Achalasia has changed my life

> forever and nothing is going to change that, just wish the

government

> would understand that. Believe me I wish I could lead a more

> productive life, I have muliple bachelors degrees and love to go to

> school and work, so this has been a rough few years.

>

> Just needed to vent, wondered if other people had any tips on how

to

> get SSD to understand Achalasia. Also wondered how other people

cope

> with not being able to live life like they used to.

>

> Regards - Steph

>

[Guest guest]

Hi Steph,

Wow, I remember you going in for your 3rd at the time I was doubting whether to go for it or not. I decided not to have a 3rd myotomy and am awaiting my -ectomy (will be done at the latest in April).

I am so sorry to hear that this 3rd myotomy again didn't do the trick and that you don't see a way out anymore now.

My Dutch -ectomy collegue, , was in terrible shape before going in for his -ectomy. Doctors gave him good chance he wouldn't survive. He then had a 4 year old kid and a little baby. He was on tube feeding for half a year to regain some strength, before going in for surgery, BUT... he made it. His -ectomy (complete -ectomy, transhiatial just like I am going to have done) was about 5 or 6 years ago and if you look at him now: wow, back to work full time as a police officer! Working shifts! He looks strong and he IS strong.

I am not telling you to go for the -ectomy, no way, that is up to you.

All I want to do with this post, is give you some hope. I can understand you feeling desperate, boy was I desperate myself when I lost hope earlier this year. But, please know that there is always light at the end of the tunnel. It might be just a little spot now, maybe only this story of , but it can grow bigger and bigger. Hold on to that light and don't get discouraged. Go see a surgeon that knows about -ectomies in detail, who performed a huge number of them. Ask for his opionion, ask him how he thinks your life can be improved.

You cannot go on the way you do right now, something must change. It's a matter of time, maybe a matter of a lot of time, but I am sure things will improve.

Hang in there!!!

Love,

Isabella

It's been a long time....

Well I havent been on here since March, I went for my 3rd Myotomy in April of 07 at s Hopkins w/ Surgeon Marohn ref'd by Ravich GI (both are awesome), it worked really well for a couple months 1st time in years that I could eat ANYTHING. I since developed a stricture had one dialation here in FL by my local GI. I just cant get a break, it looks like the next step for me is an esophagectomy but my local GI really thinks any surgery in my condition will kill me. I catch every bug that passes. I guess I am one of you super rare folks that no number of surgeries, dilatations or procedures work, I am one scarred chick inside. I have decided to just do the best I can force the food and wait until it falls. I developed clinical depression, panic attacks and general anxiety disorder from this disease ~ so with all the meds I am on I pretty much stay numb, so I have been to numb to get on

this board and talk. I was wondering if anyone else feels completely useless now because of the inability to live a normal life. I am so weak that IF I could get a job I wouldnt last long, being sick weekly, the meds I am on flat knock me out. SSD has denied my twice now we go for the hearing this go )I even had letters from my Senator, Congressman & Governor to SSD). I just dont know what to do Achalasia has changed my life forever and nothing is going to change that, just wish the government would understand that. Believe me I wish I could lead a more productive life, I have muliple bachelors degrees and love to go to school and work, so this has been a rough few years.Just needed to vent, wondered if other people had any tips on how to get SSD to understand Achalasia. Also wondered how other people cope with not being able to live life like they used to.Regards - Steph

Be a better friend, newshound, and know-it-all with Mobile. Try it now.