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Hello, fellow Lyme sufferers! I've been off line for the past couple of weeks

due to tough times with symptoms and also with my disability insurance

company. I have a question: has anyone in this group ever been offered and

then accepted disability for your Lyme (I am unable to work due to symptoms

and bad and frequent herxes), but the category of the disability was not

" physical " but rather " psychiatric " ? I've been feeling quite upset over this

issue, and so has one of my doctors; another of my doctors, however, plus a

friend who is on SSDI, and my lawyer all advise me to be thankful I got my

claim approved at all (I have seronegatve Lyme) and to take the deal and run.

I'm in quite a quandary. Any thoughts or experiences you can share would be

appreciated. I'm not asking for legal advice, just any " been there, done

that " advice or insights you can give me! I hope you are all doing well; now

that I'm back on line I'm chomping at the bit to read about the rally. I

looked for coverage on the NYC local stations, but I guess this election mess

blocked out some of the planned coverage. Harumph! Bet to all, Charlotte

in vermont

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Some disability insurance companies cover the disability claim only for two

years if it is a psychiatric disability rather than lifetime if it is a

physical disability. Better check to make sure that your disability insurance

company doesn't carry this limitation.

elizabeth

In a message dated 11/11/00 12:11:53 AM Eastern Standard Time,

CHBasset@... writes:

<< ms and also with my disability insurance

company. I have a question: has anyone in this group ever been offered and

then accepted disability for your Lyme (I am unable to work due to symptoms

and bad and frequent herxes), but the category of the disability was not

" physical " but rather " psychiatric " ? I've been feeling quite upset over

this

issue, and so has one of my doctors; another of my doctors, however, plus a

friend who is on SSDI, and my lawyer all advise me to be thankful I got my

claim approved at all (I have seronegatve Lyme) and to take the deal and

run.

I'm in quite a quandary. Any thoughts or experiences you can share would

be

appreciated. I'm not asking for legal advice, ju >>

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Dear Charlotte: SS tried to do the same thing to me. They wanted me to

go for a psychiatric evaluation because the ALJ said my diary was

" depressing " to her. I told her that this disease is depressing, and

any other reaction to it would not be normal. I then told my attorney

in no uncertain terms that I would NOT accept SS disability if it meant

saying that I was crazy instead of having a bacterial infection. You

will have to make a stand on your own, based on your own needs. But,

some of us DO need to stand up and make the point to SS that Lyme

disease IS disabling to many people.

Lovette

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Thank you, Lovette. I totally agree with you -- while we all need to make

our own decisions about what kind of disability to accept (based sometimes on

just needing money) I've told my lawyer that I want him to keep fighting for

a physical disability category. Fortunately he agrees and so do my

physicians. I'm lucky, and I know it. So, onward and upward. When I first

thought of accepting the psych. disability, I thought of all the people on

this e-list who are NOT crazy, but SICK. It may be a small contribution to

our cause, but I figured that for as long as I can fight this, I'm not going

to let the insurance write off Lyme disease as a psychiatric condition.

--charlotte in vermont

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It is a catch-22 but think of neuroborreliosis. Bacteria in the brain affects

brain

function. Cognitive ability, reasoning, emotional state, and manifests the

Central

Nervous Symptoms we live with. Think of the bacteria attacking the heart and

causing

heart dysfunction. Same concept, only when different parts of the brain are

attacked

we can have all kinds of real physical problems as well as real mental problems

due to

bacteria or protozoa invasion.

There is no proof proving otherwise so they cannot say these problems are not

due to

CLD and co-infections.

No, not pyschosomatic. The mind " thinking " the body has ills. The neuropsych

state of

bacteria in the brain affects the whole body.

Barb

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  • 2 weeks later...

CHBasset@... wrote:

>

> Thank you, Lovette. I totally agree with you -- while we all need to make

> our own decisions about what kind of disability to accept (based sometimes on

> just needing money) I've told my lawyer that I want him to keep fighting for

> a physical disability category. Fortunately he agrees and so do my

> physicians. I'm lucky, and I know it. So, onward and upward. When I first

> thought of accepting the psych. disability, I thought of all the people on

> this e-list who are NOT crazy, but SICK. It may be a small contribution to

> our cause, but I figured that for as long as I can fight this, I'm not going

> to let the insurance write off Lyme disease as a psychiatric condition.

> --charlotte in vermont

YOU GO GIRL!!!

Lovette

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  • 1 year later...

you can ask for an extention. just call them and tell them you are disabled

and need more time. there are many articles on how to apply to ss

disability. both the cfids assoc of america and MassCFIDS has articles.

find both via a search on the web and ask them for those articles.

rebecca

At 08:35 PM 2/11/02 -0500, you wrote:

>I received my paper work to apply for disability, I can't believe all the

>paper work, and they want it back in 10 days. They ask questions that I

>don't even know how to answer ! Any recommendations? Are the forms the same

>in all states? I'm in Michigan.

>Thanks

>Sue

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hi Sue and all -

> I received my paper work to apply for disability, I can't believe all

the

> paper work, and they want it back in 10 days. They ask questions that

I

> don't even know how to answer ! Any recommendations? Are the forms

the same

> in all states? I'm in Michigan.

you didn't say whether you're applying for state or federal disability,

I imagine the state forms differ. Try disinissues which

specializes in disability issues.

Judith G

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  • 8 months later...

Hi : I am currently trying to get on disability now. I was told that you

can still work a certain number of hours and collect disability but I am not

sure how many. Did you get any pamplets or do you have an attorney or friend on

disability? They may be able to give you more specific imformation. Before doing

anything call your local social social security office. Teena

Disability question

Is there such thing as being on disability and still be able to work part

time or does one have to work 0 hours?

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No, you can't work part time on government disability. It is basically all

or nothing. The except is that once you are approved, then you are allowed

to work up to, I believe, around $750 a month. Many of us have been where

you... for some time I was able to hold onto my job, but that was all... I

didn't have any life outside that. And even that caused me to become sicker

until I could no longer work at all. I couldn't work now if my life

depended on it. But many people as sick or sicker than me cannot get

government disability. It is very difficult. Mine is still pending but I

spent $5000 on tests to prove I couldn't work and still don't know if they

will accept it. On the one hand I say that if you can work 9-12 hour

shifts, you should be grateful you are not sicker. On the other hand I

think you should cut back even without assistance and maybe you won't get

sicker like many of us do.

Thanks,

Doris

----- Original Message -----

From: <jseaton357@...>

> > ,

> >

> I think I am referring to gov't. That's one most housebound CFSers are

on,

> right? Does that mean most are on Medicare? Thanks for any replies. I

know

> there are so many people on this list who have disability and can maybe

> easily answer this. People in the past ask me why I don't get on

disability.

> Answer is it would cut my income and I can't afford that. If however I

> could still work part time (say 20 hours/week) then I wouldn't mind

> disability b/c I hate working 9-12 hour shifts on the weekends just to

make

> ends meet and it takes a lot out of me sometimes.

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  • 2 years later...
Guest guest

Has anyone received disability after having a THR? If so was it state or federal and how long were you eligible? >>> I currently am drawing benefits.... although looking forward 2 hopefully going back one day, as I do miss working. Mine is federally issued... but I also receive state benefits for my children because they R yet miners & they get survivers benefits. This would go as a state per state issue I would assume, I'm not real certain of how others do it. But I know for KY you can draw both if you qualify. SSD & SSI are two very different issues.... they will substract the difference between your disablity benefits verse state guidelines of income limits and if there's a difference U can draw that in SSI benefits (*which is supplemental security income) the difference here is~ Those entitled to federal disablity benefits are the ones that have a working history & have paid into the system..... if you are on the other hand disabled from birth or have no work history ect. then your only entitled to the state SSI benefits. Which for KY I believe was $600 a month.

You need 2 B aware though.... that FEW will B entitled 2 benefits because THR & TKR generally fixes the problem. And even if U R a qualifying individual.... there R still time lines which restrict U drawing benefits for at least 6 months after your application is submitted. It can B much longer if U don't have the supporting documention 2 show your eligiblity. Plus, U still have 2 under go the state exams by their physicians to verify the paperwork U do provide.

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Guest guest

I was out for 3 months i HAD BOTH STATE DISABILITY AND PRIVATE THRU MY EMPLOYER Employers run different too... mine only required 30 days & it would back date 2 "date of" thereafter and U could draw benefits. Suppose it's merely a matter of "making sure U R" before they go paying.... which certainly would B a good policy. U lucked out on the 3 month deal was it SSD or SSI through your state ?

I am returning to work this tuesday the 21st of june.... My Doc is cautious... Congrats on your soon 2 return~ hope all goes terrific for you. Better as they say 2 B safe then sorry~ Just take your time and go at your own pace.... hopefully U won't have any problems other then just trying 2 get your groove back. :) I used 2 love my paid vacation time but man alive.... those first couple of days back were always like a nightmare for me~ sheesh! Anyhoots... I hope U don't have those type problems.... May your body run better then you've ever known and your day B merry!

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Guest guest

I was out for 3 months i HAD BOTH STATE DISABILITY AND PRIVATE THRU MY EMPLOYER...I am returning to work this tuesday the 21st of june . I have been out for 3 months.....My Doc is cautious...SassyLouYou@... wrote:

Has anyone received disability after having a THR? If so was it state or federal and how long were you eligible? >>> I currently am drawing benefits.... although looking forward 2 hopefully going back one day, as I do miss working. Mine is federally issued... but I also receive state benefits for my children because they R yet miners & they get survivers benefits. This would go as a state per state issue I would assume, I'm not real certain of how others do it. But I know for KY you can draw both if you qualify. SSD & SSI are two very different issues.... they will substract the

difference between your disablity benefits verse state guidelines of income limits and if there's a difference U can draw that in SSI benefits (*which is supplemental security income) the difference here is~ Those entitled to federal disablity benefits are the ones that have a working history & have paid into the system..... if you are on the other hand disabled from birth or have no work history ect. then your only entitled to the state SSI benefits. Which for KY I believe was $600 a month.You need 2 B aware though.... that FEW will B entitled 2 benefits because THR & TKR generally fixes the problem. And even if U R a qualifying individual.... there R still time lines which restrict U drawing benefits for at least 6 months after your application is submitted. It can B much longer if U don't have the supporting documention 2 show your eligiblity. Plus, U still have 2 under go the state exams by their physicians to verify the paperwork U

do provide.

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Guest guest

neither.. it was New Jersey State Disability....short term.. and the same with my Employer... as long as you are out for 6 months or less... you go on short term disability...

Thank you for the good wishes.... I am a bit nervous.. I hope I have the stamina.... and the stamina for the commuter traffic.....tooooooooooooooSassyLouYou@... wrote:

I was out for 3 months i HAD BOTH STATE DISABILITY AND PRIVATE THRU MY EMPLOYER Employers run different too... mine only required 30 days & it would back date 2 "date of" thereafter and U could draw benefits. Suppose it's merely a matter of "making sure U R" before they go paying.... which certainly would B a good policy. U lucked out on the 3 month deal was it SSD or SSI through your state ?I am returning to work this tuesday the 21st of june.... My Doc is cautious... Congrats on your soon 2 return~ hope all goes terrific for you. Better as they say 2 B safe then sorry~ Just take your time and go at your own pace.... hopefully U won't have any problems other then just trying 2 get your groove back. :) I used 2 love my paid vacation time but man alive.... those first couple of days back were always like a nightmare for me~ sheesh! Anyhoots... I hope U don't have those type problems.... May your body run better then you've ever known and your day B merry!

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Guest guest

Thank you for the good wishes.... I am a bit nervous.. I hope I have the stamina.... and the stamina for the commuter traffic.....toooooooooooooo >>> Nervous is natural sweetie we've all been there~ I think you'll do just fine. Stay focused on positive thinking.... the mind is a powerful tool when we use it effectively. Sides... worry will change NOT ONE EARTHLY DETAIL about what's meant to be. As to the stamina for computer traffic... I USED to be VERY OVERWHELDED by it all. Now I respond on several different boards and keep up with e~mailings from those that perfer to be more private but have questions about the matter. It becomes like riding a bike... it's only had when YOUR LEARNING 2 peddle~ after U get it down pat... you can FLY doing it! :)

I've kinda made posting & my personal experiences on THR the best part of my out come.... considering things went a lil less then "as planned" per say in my case. I stay informed though because I know my last surgery wasn't my last~ just a matter of time... and if I can help another along the way... then WOOHOO I'm not a winning in it~ but maybe something I might say will hit home 4 them & help to save them some heartache.

Boards will grow on ya :) HOPEFULLY.... as your voice may be the one to touch someone in need just the same!

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  • 2 months later...

Has anyone ever claimed disability due to their achalasia? I looked it up and there is a clause for it in Social Security Insurance. Just curious.

in Indiana <abdale@...> wrote:

Hi Katrina!I'm so happy you've rejoined the group! I hope you find some more info on spasms on this site, they are around, you've just got to search. Time is all it will take to find it.We're meeting again tonight (don't usually meet up this close to the laetst one!) to meet who's here from Ontario. We should have a good night, and it will be good to catch up with and .Please let me know how your appointment goes to get your referral to Dr. Finley. I sure hope you don't have to wait as long as I did to meet him.I'll talk to you soon!Love and Hugs,> Hello All,> > I haven't posted in probably a year and a half, maybe two years. I > was checking the messages again as I

have been having some > difficulties this week with pain and nausea and thought instead of > lurking I would post and say hi to let you all know how good it > feels to read about what other people are going through. There is > something so validating and comforting to hear that I'm not alone. > I get alot out of reading the posts.> > Just recently I met with some of the members of the Vancouver group > and it has motivated me to find a new specialist(Thanks and > Tony). I just wanted to let everyone know it's nice to read the > messages even though I have not been participating. It's good to > see you taking care of each other. I will continue to read and > maybe pop in with any support or advice I think I can offer. > take care,> Kat

Jonah iel

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,

My husband hasn't claimed social security disability for his

problem (his is actually diffuse esophageal spasm, but a pretty severe

case of it). He has, however, filed the Family Leave and Medical Act

(FLMA) because he currently misses an average of a day a week from

work with his symptoms (besides time off for doctor visits, tests,

etc.). The symptoms are very similar to achalasia for him and he

never knows when a bad day is lurking. His " leave " falls under the

intermittant catagory of missing time from work. He still worries

that they could find a way to fire him, even with the documentation of

his illness and treatments (which just adds stress and probably more

symptoms). Also, it's a hassle because EVERY time that he misses a

day because he doesn't feel well, he must have a note from the doctor.

Our local gastro. is very understanding of his problem and has said

" Call any time for a note. I know how bad your symptoms can be and

I'll sign whatever you need. " But, of course when you call the

office, you have to talk to the staff first. First you talk to the

receptionist and then his nurse. Sometimes, the nurse has said " Are

you really that sick that you can't go to work? " He's embarrassed

enough that he has to call, but then they try to make him feel worse!

I think they know him by now (as the pain in the a** patient

probably) and seem to be a little nicer, lately.

I am curious to see if others have filed for disability (and better

yet, if they've been successful). Are you thinking of that

possibility for yourself? Has anyone else out there filed for FMLA?

Take care!

in Michigan

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and ,

I haven't filed for social security. I used Family Leave, but just when I was out for the surgery and the period of recovery afterward. Sorry to hear that the doctor's staff is so rude and not understanding to you. Hope your job is, too. I understand your concerns about being let go, even though you have submitted doctors notes and have the Family Leave forms submitted.

I will say a prayer that all goes well for you.

let45ride <brendacoyle@...> wrote:

, My husband hasn't claimed social security disability for hisproblem (his is actually diffuse esophageal spasm, but a pretty severecase of it). He has, however, filed the Family Leave and Medical Act(FLMA) because he currently misses an average of a day a week fromwork with his symptoms (besides time off for doctor visits, tests,etc.). The symptoms are very similar to achalasia for him and henever knows when a bad day is lurking. His "leave" falls under theintermittant catagory of missing time from work. He still worriesthat they could find a way to fire him, even with the documentation ofhis illness and treatments (which just adds stress and probably moresymptoms). Also, it's a hassle because EVERY time that he misses aday because he doesn't feel well, he must have a note from

the doctor.Our local gastro. is very understanding of his problem and has said"Call any time for a note. I know how bad your symptoms can be andI'll sign whatever you need." But, of course when you call theoffice, you have to talk to the staff first. First you talk to thereceptionist and then his nurse. Sometimes, the nurse has said "Areyou really that sick that you can't go to work?" He's embarrassedenough that he has to call, but then they try to make him feel worse!I think they know him by now (as the pain in the a** patientprobably) and seem to be a little nicer, lately. I am curious to see if others have filed for disability (and betteryet, if they've been successful). Are you thinking of thatpossibility for yourself? Has anyone else out there filed for FMLA? Take care! in Michigan

Start your day with - make it your home page

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Yes I filed for disability and I was lucky enough to be accepted after a 5 month waiting period. I am not sure if it was due only to achalasia as the decision was probably more based on severe osteoarthritis. I have been and still am fighting for long-term disability. I appealed twice, once on my own and once with a lawyer and I was turned down both times. I was going to give up on the long-term disability from my previous employer, but guess what? The insurance company is now under investigation by the Dept. of Labor and another insurance regulator. They are being forced to re-evaluate all of the denials for at least the past two years and I fall into that category. Hope springs eternal! I am waiting to hear that it will be reviewed again, it could be a long time, but I will probably have mounds of paperwork to do again. I am unique in that my achalasia in not typical as I have mentioned in the past. My swallowing problems are fine for now, but I plan to have an esophagram soon to make sure that it hasn't stretched out too much. As I mentioned previously, I have these disturbing and loud noises that are uncontrollable. Between the arthritis and the noises, it is impossible to be very mobile, let alone work at a job!

If you ever want to talk about filing for disability, please contact me. I probably will talk your ear off!

Diane in Chicago

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wrote:But, of course when you call the office, you have to talk to the staff first. First you talk to the receptionist and then his nurse.Sometimes, the nurse has said "Are you really that sick that you can't go to work?"

-- I know you said it's getting better w/ the staff now, but one thing you might want to consider is either faxing or emailing the doctor, so that you don't have to talk to the staff at all.

The staff at my general practitioner's office is horrible at relaying symptoms, doing insurance referrals for specialists, etc., and until I can find a different doctor's office I'm just using the fax machine for most of my communications with them. This way if I put ATTENTION DOCTOR JONES -- URGENT in big letters at the top of the fax, it will actually make it to the doctor's desk in under a week.

People in general seem to be lazy, always wanting to take the easy way out whenever possible. I find I get better results if I do all the "work" for them. I include my full name, address, phone, fax, and date-of-birth information at the top of anything I fax to them (you can even ask for your "filing code" to make it even easier for them to pull your patient file) and I write a complete description of what's going on and what I need. (I recommend making up a "template" file in your computer that you can just open up, add the date and any changes in the info, then print and fax.)

If all they have to do is pull the file (which they can easily find b/c you included all the info) and plop it on the doc's desk with your fax, they only have to spend 30 seconds on your request. But if they have to talk to you on the phone, ask you a bunch of questions, write down all the answers by hand, plus digging up your patient file and putting it all on the doc's desk..... it's much more likely to get set aside until they have time to do "all that work".

Debbi in Michigan, who has lost almost all faith in the medical profession.....

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Hi there and I am a new member of this group. I was reading your

story about your husband and filling for insurance. Well I would

like to share my story with you as to my battles with the insurance

company here in Canada. I will tell you that I have been on long

term disability now for 2 years this month.

I have had to fight my insurance company tooth and nail every inch

of the way. When I first applied for my insurance benefits, I was

denied. They stated " We are sorry to hear you have a little pain and

discomfort, though we find no cause to accept this claim " . Well

being the sort of person that would not accept this discussion I

went into the appeals stage. I hope the you are ready for a long

haul of paper work, more paper work and questions that would make

you want to kill someone. As you stated that your Dr must be

thinking what a pain in the A--. Well I call that standing up for

myself. For I am the one that suffers with both Achalasia &

Barrett's on a daily basis. I am very lucky, in the fact that I have

good Dr's that understand what I am going through. After 7 months

of reports, phone calls, meetings and a mountain of letters my claim

was accepted.

Now having gone through this battle I must say that I have learned

a lot about insurance company's in this time. The first thing you

have to know is that they denied 97.5% of all claims that are

submitted to them. They certainly don't like paying out claims. They

are not in the business of doing that. That is right, for that is

what they (the insurance company's) do. The next thing you have to

do is not take no for an answer, and be willing to stand up and

fight. Hopefully you have the energy,money saved and the information

to back up your claim. It is an unwritten rule that unless you

return for at least a 3rd time to these company's, they won't even

consider your claim. What they do, and are famous for is waiting

people out. They know that time is on their side, as well as the

fact that most people will just walk away are not willing to fight.

They don't understand this disease. They claim that their Dr's

examine the files. Well I have to say most of their Dr's are on

contract and most are retired. Having insurance only gives you the

rights to sue your own insurance company. You do always have to

option of dealing with all of this through a lawyer, though the

costs can be very high, and when your not working money is tight for

all of us.

I hope by sharing my experiences with my insurance company has

given you some insite as to what you will go through. If I can be of

any more help, please feel free to write me. As for anyone else that

needs help in dealing with anything to do with this disease I am

more than willing to assist in any way I can. It is a sad thing

that anyone has to suffer with any disease, let alone the ones like

achalasia that most have never heard of.

- In achalasia , " let45ride " <brendacoyle@c...> wrote:

> ,

> My husband hasn't claimed social security disability for his

> problem (his is actually diffuse esophageal spasm, but a pretty

severe

> case of it). He has, however, filed the Family Leave and Medical

Act

> (FLMA) because he currently misses an average of a day a week from

> work with his symptoms (besides time off for doctor visits, tests,

> etc.). The symptoms are very similar to achalasia for him and he

> never knows when a bad day is lurking. His " leave " falls under the

> intermittant catagory of missing time from work. He still worries

> that they could find a way to fire him, even with the

documentation of

> his illness and treatments (which just adds stress and probably

more

> symptoms). Also, it's a hassle because EVERY time that he misses a

> day because he doesn't feel well, he must have a note from the

doctor.

> Our local gastro. is very understanding of his problem and has

said

> " Call any time for a note. I know how bad your symptoms can be and

> I'll sign whatever you need. " But, of course when you call the

> office, you have to talk to the staff first. First you talk to the

> receptionist and then his nurse. Sometimes, the nurse has

said " Are

> you really that sick that you can't go to work? " He's embarrassed

> enough that he has to call, but then they try to make him feel

worse!

> I think they know him by now (as the pain in the a** patient

> probably) and seem to be a little nicer, lately.

> I am curious to see if others have filed for disability (and

better

> yet, if they've been successful). Are you thinking of that

> possibility for yourself? Has anyone else out there filed for

FMLA?

> Take care!

>

> in Michigan

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I

have not had much troulbe til here lately. I had an open lap done in sept 2002. I have started having the foam again and can tell that things tend to stick around and hang out for awhile LOL. If i have to go through any other surgeries i will probably try for disability because it just seems like a never ending battle...the doctor told me i would be lucky to make it 5 yrs after this last surgery. Its been 3!!!! So i don't know what the next two years has in store for me. I do remember looking up achalsia in the disability handbook and there is a section on it...only because it is rare i think. Yeah i was a pain in the a** patient too...LOL. I use to call my doctor at least 2 times a week. What part of Michigan are you in...i was born in Ann Arbor.

in Indianalet45ride <brendacoyle@...> wrote:

, My husband hasn't claimed social security disability for hisproblem (his is actually diffuse esophageal spasm, but a pretty severecase of it). He has, however, filed the Family Leave and Medical Act(FLMA) because he currently misses an average of a day a week fromwork with his symptoms (besides time off for doctor visits, tests,etc.). The symptoms are very similar to achalasia for him and henever knows when a bad day is lurking. His "leave" falls under theintermittant catagory of missing time from work. He still worriesthat they could find a way to fire him, even with the documentation ofhis illness and treatments (which just adds stress and probably moresymptoms). Also, it's a hassle because EVERY time that he misses aday because he doesn't feel well, he must have a note from

the doctor.Our local gastro. is very understanding of his problem and has said"Call any time for a note. I know how bad your symptoms can be andI'll sign whatever you need." But, of course when you call theoffice, you have to talk to the staff first. First you talk to thereceptionist and then his nurse. Sometimes, the nurse has said "Areyou really that sick that you can't go to work?" He's embarrassedenough that he has to call, but then they try to make him feel worse!I think they know him by now (as the pain in the a** patientprobably) and seem to be a little nicer, lately. I am curious to see if others have filed for disability (and betteryet, if they've been successful). Are you thinking of thatpossibility for yourself? Has anyone else out there filed for FMLA? Take care! in Michigan

Jonah iel

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