disability

[Guest guest]

thaks for the info. i am going on medical disability for awhile. i think that

can last 6 mos. the dr is writing an order for an adjustable workstation.

this way i can stand up when i get stiff and i think if i get the pressure

off my spine i won't get so dizzy anymore. (i hope) my back and my neck are

sore and stiff. my ankles and feet hurt very bad. i've been having cramps on

my left side by my ribcage. i can feel my body bending over to the left. also

feels like it pushes me down into the keyboard sometimes. it is the strangest

thing. not to have control. after that they do have a long term disability. i

think it lasts a year. i downloaded the disabilty papers from ss last week.

but really haven't looked at them yet.

[Guest guest]

I agree in getting an attorney to help with SS. The first attorney I had had

my case a yr before he finally got all the stuff from SS and then he told me

he didnt think i would get it...so he gave me a copy of all my paperwork and

I went to a guy down the hall from him...by this time a yr had passed and I

was much worse off physically..went to drs more often and had all kinds of

other things added...so the last atty collected everything in 8 months and we

went and boom got it right away...all the way back to date of onset 2yrs

before.He cost me very little ..and would not take the case unless he knew he

could win....My hearing was less than 15 minutes as he had all paperwork and

only questions asked of me were name, age, address......but yes I went thru

the first 2 denials w/o an attorney. There are also some public offices that

work with the disabled that can help you for free in filling out the

forms.....don't fill the forms out at the SS office.....I did and frankly, I

should have known better ...but I was anxious to start the process.....there

is a way to fill out the forms and get it so much quicker cos of

wording....get help.....it saves time....I loved my atty .....hewas so good

and thorough on my case ......Good luck...Judy in AZ

[Guest guest]

Hi Kathy,

I don't think we have met. I have been sick so I have been reading a lot

of the post, not answering many. I wanted to tell you to fill out the

papers for SS, it can take years to get. I applied 4 1/2 years ago. At

the time I thought the doctors and lawyer were crazy telling me I needed to

start the process. At that time I didn't believe I would ever need

disability and I did very bad in court when we went. Now 4 1/2 years later

they were all right, I should have listened to my attorney. I will be

going back to court very soon. All my doctors have filled out the papers

so we are ready to go. The point I am trying to make is you may not feel

at this time you need it but it can take so long. If your doctor say he is

behind you then you should start the process. SS takes their time with

everything.

The court hearing I had 4 1/2 years ago, I never heard about the results

of it. Luckily I had a good attorney who after six months said we are not

waiting any longer, we will start the process over again. He told me my

case was sitting on someone's desk in Virginia. We did and this is were we

now stand. I was in reconsideration for over a year, being sent from one

SS doctor to another. Three times I have been approved at the district

level and turned down in burg. To get back to the first court

hearing. The other day in the mail I received a denial notice, I did know

what it was for. While speaking to the lady at SS, who also didn't know

what it was, I realized. It was my denial for SS from the first court

hearing. It was 4 1/2 years old and it came from Virginia!!!!!!!!!!!!!!!!

I was glad I had an attorney who knew what had happened.

I would advise you to get an attorney and start the process. I hope I am

not butting in but I thought you should know, this SS is a long process.

Me Mom

> From: ANJILLAH@...

> PEPPERGIRL50@...; RA-supportegroups;

rheumathritisegroups

> Subject: [ ] Disability

> Date: Tuesday, December 19, 2000 12:15 PM

>

> Dear Kathy:

> I hope I have the right person. I saw an email on the computer written

by

> Tery/Fla, and I thought this was who it is about.

> This is just my opinion about going on disability. If you feel you can't

> continue working before you say anything to anyone about it please hear

what

> I have to say. I have RA,OA,Osteoporosis, Asthma, Sciatica, Spinal

Stenosis,

> Gout, Fibromyalgia, high blood pressure, anemia, stomach problems, and a

> kidney transplant.

> I worked for as long as I could. I was lucky though. Some I know are

not as

> lucky. Check out your finances. If you have a lot of bills, like I had

and

> have, don't let that stop you. Call each one of your creditors and tell

them

> this. Say you can't pay because you are sick, but you want to pay and

will

> if they would work with you. Believe me in most cases this works. They

> would rather work with you than you go on bankruptcy, although, that is

an

> option too. Then make sure you have some kind of disability insurance at

> your job. If you don't know about it, find out about it. That has been

a

> lifesaver for me. Then, get your Dr to write a letter that you can't

work

> anymore. Be sure this is what you want.

> You may not want this, but if you can't go on like this you have no

choice.

> That is what made up my mind. Living in pain and working was just

> intolerable. Then call Social Security and ask for the papers,

> (application.) Fill them out as soon as possible. Photo copy

everything.

> You don't realize how SS can loose things. It is nice to have a copy, if

you

> have to start over from scratch. Believe me, it happens. Keep a folder

with

> all info concerning disability in a handy place with your copies of

> everything in it. As far as medications there are ways of getting them

paid

> for. There are several ways. When you get to that point write me and I

will

> send you info on that. My email is:

> Anjillah@.... I live in Linden, New Jersey. I have been on

disability

> for about 3 years. Don't give up it is not that difficult. If I can do

it

> anyone can. If I can help with any questions please email me. I am also

an

> RN. Good Luck and Merry Christmas. May this be a very good New Year for

you.

> Sincerely, J. Colletti

> Anjillah@...

>

>

> Our websites: http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

> Change subscription options:

[Guest guest]

I don't really think you will have that same type of problem. #1 you have

medical disease which affects your body. A back problem can be a short or

long term injury it all depends. The disability determination office will

get all your medical records and recommendations from the physician along

with any x-rays, labs etc. It is possible that you may be turned down the

first time. I was, it took about 1 yr for approval for me. They may require

that you go for an independent study with a psychologist, I had to, you know

test your memory, draw pictures, put squares in holes, etc. RA is a problem

disabling disability, your RA factors, the changes in your body are a proof

of disability. I wouldn't start worrying about it at this time. Just be

patient and do all the paperwork regardless of how tiredsome. Keep your chin

up..Also, a nurse, she was disabled and on worker's compensation, that area

is handled differently. I worked with worker's comp and wc claims are

unfortunately abused more than the public realizes.

Jan

Jan

[Guest guest]

I was surprised to read your note. S.S. doesn't normally have the

resources to watch people. Could it be that your friend was on Workman

Compensation? I have lived that nightmare for almost 6 years. They follow

me and watch my house all the time. If you put trash out or anything they

will try and stop your checks. What you wrote is so typical of WC. I have

been trying to get SS for a while now but I didn't think they followed

people around. Maybe it is different in each state.

Me Mom

----------

> From: kringlemom@...

>

> Subject: [ ] disability

> Date: Thursday, February 01, 2001 11:13 PM

>

> i dropped off my disability forms to social security today. now the

waiting

> begins. i told my parents about this. they told me one of their friends

> daughters(got this now!!) was a nurse. she hurt her back while lifting a

> patient. she was awarded social security disability and all was fine. she

was

> picking up a laundry basket and they were taping her and took away her

> disability, she had to pay all the money back. i do my own laundry, but

it

> takes everything out of me. are they going to be sneaking and peakin in

my

> windows? i mean you buy groceries you've got to bring them in, put them

away.

> then fall down for awhile. do they stay long enough to see the outcome?

>

>

> Chat room: chat/

> Web pages for our group: http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

> Change subscription options:

[Guest guest]

thanks jan. i know it will take some time. it just got to me i guess.

[Guest guest]

that could be, they said she was injured lifting a patient.

[Guest guest]

It's the few people that have abused the disability, that makes it bad for

everyone else. I know that they did that to me and even went as far as

sending me to one of their doctors,(they were so sure I was faking,) when

they received the letter from the doctor, stating that there is substantial

damage, is when they started to back off. They also didn't wait to see the

outcome. This is really getting to be rediculous, in order to have a half

way decent life I can barely help with any daily chores, getting up and going

to work is a job in it self. Taking a shower is just as bad. anyway , do you

ever get discouraged with all the changes. I sure do. Joyce

[Guest guest]

Have you checked out the stalking law. You, yourself go to the library and

check out things like Ohio Revised Code, on stalking, as well as laws

concerning the subject and so forth, maybe you can go to the lawyer with some

ammo. Let me know.

w

[Guest guest]

Hi Joyce,

I agree with what you say, I have been through all that you have

mentioned. I am on WC right now, and I can not tell you what a nightmare

this has been. People sitting outside my house video taping me everytime I

walk out side. Or following me around when I drive my car, try driving

knowing they are right behind you. I even had a man follow me around

Wal-Mart. My sister called the police and they were told that it was

harrassment. They left me alone for a while but they always come back.

I have been trying to get SSD for four and hald years. That too has been

hard. They have sent me to their doctors. Right now I am getting ready to

go to court for SSD. I never thought about applying for SS, it was my

doctors who told me, I needed to do this.

It is upsetting because so many people who don't need it get it and make

it difficult for the ones who do. I don't understand any of it, I have had

seven of my own doctors tell them how bad I am. One thing I know I did I

shouldn't have. I complained about one of their doctors because he really

hurt me. I called and I shouldn't have. My attorney told me not to say

anything but I didn't listen. So I think that is what has held mine up.

It has been approved three times at the district level and failed at

burg. It is very frustrating.

Me Mom

----------

> From: FIBROFOG247@...

>

> Subject: Re: [ ] disability

> Date: Tuesday, February 06, 2001 12:04 AM

>

> It's the few people that have abused the disability, that makes it bad

for

> everyone else. I know that they did that to me and even went as far as

> sending me to one of their doctors,(they were so sure I was faking,)

when

> they received the letter from the doctor, stating that there is

substantial

> damage, is when they started to back off. They also didn't wait to see

the

> outcome. This is really getting to be rediculous, in order to have a

half

> way decent life I can barely help with any daily chores, getting up and

going

> to work is a job in it self. Taking a shower is just as bad. anyway , do

you

> ever get discouraged with all the changes. I sure do.

Joyce

>

>

>

[Guest guest]

how horrible to have people follow you and video tape you. this was from wc?

i was on wc before and never had that (thank god) but i guess there are

people who abuse it so they have to make sure.

kathy

[Guest guest]

Hi,

Yes I have checked this out, they stay just on this side of the law. I

have had the police out to my house. I am suppose to call the police every

time I see them. I really don't have to my neighbors call on them any time

they see them. Its funny though once the phone is made they normally leave

before the police get here. They must have scanners in the vehicles. I

know the cars they use and always before we see outside, I will about a

week prior to them watching the house start getting phone calls. They hang

up as soon as I answer, I think they are trying to find out when I am home.

I can't prove the phone thing I have just noticed that once we start

getting these hang up and few days later I will see them. They don't try

to hide the fact that they are there, they are very open about it.

I try not to let it get to me. I remember one time they were sitting

there and it was snowing. I try to tell myself it is just someone trying

to make a living but it does get on my nerves.

Me Mom

----------

> From: FIBROFOG247@...

>

> Subject: Re: [ ] disability

> Date: Tuesday, February 06, 2001 11:28 PM

>

> Have you checked out the stalking law. You, yourself go to the library

and

> check out things like Ohio Revised Code, on stalking, as well as laws

> concerning the subject and so forth, maybe you can go to the lawyer with

some

> ammo. Let me know.

>

>

>

>

>

>

>

>

>

>

> w

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

heidi-i've been on SSD since 1983. keep on Appealing.

barb fl

[Guest guest]

Hi CJ, Thankfully I received my disabilty the first try with Social

Security. This was in 1999. I was 42. I knew about a year before I actually

applied

for social security disability benefits that I was going to do it. The last

year of my work I struggled so hard to keep myself going. And I documented

everything. I made sure when I went to my doctors (all doctors, physical

therapist,family doctor, etc.) that they noted everything in my file that was

related to my CMT. I discussed with all my doctors about my decision to stop

working. My doctors were aware of my CMT and agreed it was the best thing for

me.

I made sure I told them about all my pain, my falls, lack of concentration

due to sleep deprivation. The weakness in my hands and legs. The depression.

I am sensitive to drugs. So any meds I am on tend to make me groggy and I

cant drive on a regular basis, Which my doctor noted in my file. Social

Security writes and asks your doctors for records. So everything no matter how

small

you think it is .. you must make sure it is in your files. I hope this helps

you. The more information you have the better off they can see how CMT

effects your life. take care, Carol

[Guest guest]

hi, i too filed for disability in may of this year i did it

over the phone they sent me a lot of papers to fill out about

what i could and could not do. then they also sent me to a

doctor that was sharing a office with a dds and had a small

room that had a make shift doors. he to did not know anything.

He was a holistic doc? my app was for 9.am last Monday i was

there on time but did not see him for a least 45 min when he

came in it was like he really didn,t want to be there. but

they had sent him all my med records from the hospitals and my

own doc that stated that i had cmt. he left the room for a min

and i looked at the file they paid him 160.00 to see me for

15min. he had a sack of papers from others he was seeing that

day too.

so the Tuesday i was to see a PhD she was alittle different.

she ask me what day it was and a few other questions after i

told her about being in the hospitals all of my young life she

said you turned out pretty good. she also didn't know any this

about cmt.

they have all my files from when i was struck with this at 3mts

old and have had it all my life the only mda thing i have is a

walker i have to use when i go out for a long walk or to

shopping with my wife i went for a cane came out with a walker

and my heart broke. i don't know anything yet but if not i will

not stop until i do get it it runs in my family and my sister

has it her childern has it and there children have it . my only

child thank god does not have it.

Jim

[Guest guest]

Thanks Bob, sounds like you had a really terrible experience with

getting your disability. I'm not quite ready I don't believe to

start the process. I hope things get better for you down the line.

I know it's hard, but I try to stay positive on all aspects of my

life (but it is getting harder each day). Take care of yourself.

CJ

[Guest guest]

Thanks Carol for the information. I have a lot of the symptoms that

you talk about, 'cept I have a very high tolerance to pain and

medicine. I've been on quite a few different med's and they don't

help at all, and it could be the high tolerance, don't know for

sure. Or if it's that I've been on medicine all my adult life.

When you were granted diability, were you in AFOs of some sort?

CJ

[Guest guest]

Hello,

Well get this one, I was receiving SSI until I married my husband and

then they took my money away saying his income now counted. Now that I had

another baby they said to reapply for SSI because there are more children which

means I could get it back, what the heck they are sending me to a doctor and

even if I don't get SSI, I can at least know where I stand as far as cmt goes,

they want to find out how fast my disability is progressing. Now can you tell

that? Thanks. I will be away for a week in august but be back soon.

Take care

Heidi in NH

[Guest guest]

((((Elaine)))), I am so sorry that you have to go through all of

this. It's not right. You are in my prayers.

Susi

[Guest guest]

I applied for SSI disability yesterday and am going thru the process. I

applied 3 years ago and was denied twice and then got a letter to appeal and I

said

forget it, the lady yesterday said I should have appealed it. How does the

every day human know all the rules and ropes for Petes sake? They sure take it

away from you and make you fight like the dickens to get what is coming to you.

in OK

[Guest guest]

Elaine,

That sounds pretty typical, like needing credit to get credit. If you don't mind

my asking, why does your doctor what you to retire?

> SS That's too much money to make.

> Right now, I keep working full time

I have no choice but to do the same, unless I won Lotto last night...

::checking numbers::

....da**! The Lotto groundhog sez " forty more years of work " for me.

Anyway, SS is not exactly known for being nice, or fair... My grandmother

worked most of her life and barely got by with her check.

-

[Guest guest]

Hi, SS has neuromuscular as a disability approved in Feb 2002,

and mine went through in 30 days after all the paperwork was

completed good luck

For a look at Rehabilitation Management of CMT, try this book

http://www.aicmt.org/books.htm

[Guest guest]

I applied for ssd about 1 month ago and still waiting to hear something,how

long does it take to hear from them ..waiting for that doctor app I heard they

send u to.

heidi in georgia

[Guest guest]

Hey Craftycreations

Thanks for that information. The booklet they gave me stated that SS has a

list of diagnoses that they go by for disability. But do not list them. I

wondered if Neuromuscular was one of them. So I guess it is. Thanks for the

information. It has made me feel a little better.

Elaine........Michigan

[Guest guest]

The ss web page indicates neuromuscular, Also the MDA clinic

said applications for ss are being approved faster good luck

nne San Buno Calif