US disability & some frustration

[Guest guest]

Dear Joy,

Believe me I sure know how you feel. I am really feeling useless, but am so

fatigued, and plagued by one problem or another, I can barely carry the

basket of laundry up the stairs. I have trouble just folding laundry. Bad

enough I can't help financially any longer, but I can barely do much around

the house. It is frustrating, and I hear your frustration. I have applied

for Social Security and hope that I get it, because if not I will have to

hire a lawyer, and go through all that. I just don't feel like I have the

mental or physical fortitude to fight for it. You should definitely apply.

There is a 1-800-# off the website, and you can start the process over the

phone. Do it for yourself, and family. I will not feel so bad if I have a

little money to take some of the burden off of my husband, he is carrying so

much already. I guess they are having information sessions at the

conference. If you want to email me privately, and give me your address, I

will pick up whatever I can to help you with this. There is a newsletter out

from the EDNF with a letter in there from someone who followed the info at

the conference, and received it in record time. I will get a copy of that

too, as there are some hints, and someone to contact to talk to. Let me

know. Love, Sue Ginley

[Guest guest]

In a short time (couple of years?) I went from having a family

(parents) that acts as though everything is in my head with my joint

problems to having both my parents and my husband thinking that I

should try to get disability.

I've checked on it on the Social Security website and I don't think I

am " bad off " enough. I don't know if I even have enough documentation

of problems I am having. I've never been given any pain medication

(not that I haven't really needed help) and half the time I don't go

to the dr when I am having a problem as they really aren't going to

do anything for me anyway. It is making me all wonder if maybe I am

not really as bad as I think I am and that maybe I am just milking it

some and that I should be able to get a job.

I had my last job for 8 years, as an office manager for a very small

video production company. I was the everything person. A lot of

what I did was just being a warm body there in case someone came in

or had questions or something. I did the accounts receivable &

payable, phone answering, ordering of lunch. I got paid okay, not

tremendous but it was what you could call a cake job. Not too

strenuous. They knew my limitations as most of them developed while

I was working there. But I had problems when I had to type a lot.

And when I had to do repetitive tasks with my hands - like when we

sent out promotional mailings. I used to hand address the company

Christmas cards but I can't write much anymore.

But now I don't know what I can do. I know what I can't do.

I can't stand for long, or walk distances because of my hips.

I can't type for long periods (no more data entry, like when I worked

to convert the card catalogs to computer for the Library of Congress).

Can't do library work as I used to because I can't repeatedly grasp

books for shelving or do the squatting & stepstool climbing for it

either. Can't pick up anything heavy because of both hips and wrists.

And it is not just because things are worse for me now that I am

pregnant. THey've become much worse since last fall. In fact, I am

considering getting a handicap parking tag just so I can get to the

store more easily. I've printed the application, I just need to see

if my physician will sign it for me. I have started to have my leg

give way again and have caught myself from falling 4 times lately.

THe more I walk, the more I feel as though I will fall. Don't need

to be falling while pregnant.

My mother's neighbor is 49. She had knee surgery last year and is

now on disability. The rest of her is fine. She does very strenuous

yard work and anything she really wants to do. I can't do that or

even vacuum without being out of commission. I can't even walk around

the mall. And when I was at the Social Security office getting my

information changed on my card, there was a young guy applying for

disability - he is unable to keep a job because of anger problems.

So I don't know what I can do. There is not much to be done when you

have limited use of your hands and if your hips aren't dependable. I

am not ready to have my wrists fused and I don't know that would do

any real good beyond making the wrists not sublux.

Sorry to go on so much. Feeling very frustrated and kind of useless

since I am having trouble even doing the things I need for my family.

We need an extra income besides just my husband's job and I can't do

anything to help out.

Thanks for listening to me and letting me vent.

Joy

[Guest guest]

Hi Sue,

Lana here. I would like any information you have also. How's your mom?

Tell her hello for me.

Love Lana

[Guest guest]

Sue do you think that you could send me that information too? I would really

appreciate it.

Kristi

Re: US disability & some frustration

Dear Joy,

Believe me I sure know how you feel. I am really feeling useless, but am so

fatigued, and plagued by one problem or another, I can barely carry the

basket of laundry up the stairs. I have trouble just folding laundry. Bad

enough I can't help financially any longer, but I can barely do much around

the house. It is frustrating, and I hear your frustration. I have applied

for Social Security and hope that I get it, because if not I will have to

hire a lawyer, and go through all that. I just don't feel like I have the

mental or physical fortitude to fight for it. You should definitely apply.

There is a 1-800-# off the website, and you can start the process over the

phone. Do it for yourself, and family. I will not feel so bad if I have a

little money to take some of the burden off of my husband, he is carrying so

much already. I guess they are having information sessions at the

conference. If you want to email me privately, and give me your address, I

will pick up whatever I can to help you with this. There is a newsletter out

from the EDNF with a letter in there from someone who followed the info at

the conference, and received it in record time. I will get a copy of that

too, as there are some hints, and someone to contact to talk to. Let me

know. Love, Sue Ginley

[Guest guest]

Hi Lana,

Will get info for you too. But do need your address, so I can send to you.

Send it privately. Mom is doing really good. It is so unbelievable, really.

They just don't know everything about vascular EDS, as so many really do

survive far beyond what they say. Well, have to go. Am having a pool party

for our local support group today. Should be fun, although I doubt anyone

will swim, is way too cold in Buffalo today, at least for me. Talk to you

soon. Love, Sue

[Guest guest]

Dear Kristi,

No problem. Will send it after conference. Let me know your address

privately. Hope all finds you well. Sorry you won't be able to come to the

conference this year, but will be thinking of you. Love, Sue

[Guest guest]

Hi Sue,

So glad about your mom! My address is Lana Christensen, 2342 North 143 Street,

Omaha, NE 68164.

Thanks so much!

Love Lana

[Guest guest]

Hi! My name is Marilyn and I am an attorney for the fed. gov't with EDS.

(Anything I say is not to be construed as advise from the EDNF or the U.S

gov't).

If you can afford to do so, I would wait until after the baby is born to

start looking for a job. You are likely to have a rougher than average

pregnancy, so you should listen to your doctor, and try not to stress out.

You do not have to have a doctor's note to be recognized as an individual

with a disability. It is sufficient that you and others around you recognize

you as such. (Although doctor's records help). Under US law, an employer

cannot refuse to hire you on the basis of your disability, if you are

otherwise qualified for the job. Under the Americans with Disabilities Act,

if they do hire you, they simply need to make accomodations for you. (Like

giving you a chair to sit in while you made all those copies at the Library

of Congress). If your disability should worsen while working for this

employer, he can't simply fire you, even if you can't do the job anymore, if

there are other, available positions in jobs that you can handle. You might

want to consider part time or flex time to best fit your needs.

The federal gov't is a great employer. They (for the most part) reccognize

that people have varying degrees of disability, and offer jobs inclluding

job-share arrangements.

Not only would you be protected by the Rehabilitation Act (the fed. gov.

version of the ADA), but you would also be protected by the Family and

Medical Leave Act. Also before Clinton left office, he signed a bill

protecting gov't workers from genetic discrimination. You can get job

listings at www.opm.gov, and you can find out what your rights are on the

EEOC's home page, which I think is www.eeoc.gov.

Good Luck!!!!

Marilyn

P.S. Don't worry about getting handicapped parking. I have had it for 3

years, and I always get dirty looks when I park, because I don't " look

handicapped " . I just shrug it off as a result of other people's ignorance of

chronic conditions.