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

[Guest guest]

Steph,

I had part of my E removed but not all of it, the lower third

was removed, which I think is why I’ve had the success rate that I have

so far!!! I’m on my 5 day of antibiotics!! Woo hoo, oh boy!!! I’ll

let you know if I want to borrow those or not LOL!!! Hopefully in the next few

months we can figure this immune thing out! I’ve stopped relying on

calories to keep my weight up, as I don’t believe that is really helping.

I’ve went to a more natural diet so we will see how that goes. I know if I

go back to Cleveland I will have to fly or it would be an 18 hour drive from

here. I think I will go for a barium swallow first and see how things look,

after so many I know what to look for LOL!

Good luck when is your hearing?

From:

achalasia [mailto:achalasia ] On Behalf Of achalasiagoaway

Sent: Saturday, January 12, 2008 8:45 PM

achalasia

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

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]

Oh, they mentioned trying that but that I may be too scarred from the prior 3 myotomies and all the dilatations, that I may not have a partial as an option. I am not on a special diet my doc said eat anything I can, skies the limit, so i try. I am terrified of any further surgeries because my local GI scared me. I am now 36 with a 2 y/o and feel like I would do anything not to have that surgery and take anymore of me away from my son. " C. Warren" <juliecwarren@...> wrote: Steph, I had part of my E removed but not all of it, the lower third was removed, which I think is why I’ve had the success rate that I have so far!!! I’m on my 5 day of antibiotics!! Woo hoo, oh boy!!! I’ll let you know if I want to borrow those or not LOL!!! Hopefully in the next few months we can figure this immune thing out! I’ve stopped relying on calories to keep my weight up, as I don’t believe that is really helping. I’ve went to a more natural diet so we will see how that goes. I know if I go back to Cleveland I will have to fly or it would be an 18 hour drive from here. I think I will go for a barium swallow first and see how things look, after so many I know what to look for LOL! Good luck when is your

hearing? From: achalasia [mailto:achalasia ] On Behalf Of achalasiagoawaySent: Saturday, January 12, 2008 8:45 PMachalasia Subject: Re: It's been a long time.... 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>

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