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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 cin

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Posted 22 October 2008 - 11:18 PM

I'm contemplating applying for SS disability, because it has become very painful to work. I'm a xray technologist and the pushing and pulling of films are very painful. I have ulcers on all my fingers except my little fingers. I have had seven surgeries to remove the ulcers but within 6 months of returning to work the ulcers reappear. I have heard that this could be job related but no real data. I have been told by my rheumatologist I will just have to keep having surgeries to remove the ulcers. If do this I will not have any fingers left. I do believe my scleroderma is partially work related. Before I became an xray technologist, I was a dental assistant working with mercury and various solvents. And now being an xray tech I work around radiation. Has anyone applied for disability and gotten it, how hard was it to get disability and how long did it take.

Thanks

Cin

#2 Lyn

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Posted 23 October 2008 - 03:12 AM

Getting disability is not easy. I am on it only because I have other issues, not from the sclero. I was in pretty bad shape, so once it got started it was out of my hands, doctors in charge of the rest of the paperwork, thankfully. My sister has tried more times than I can count. She is finally going to get a lawyer like she should have after her first rejection. There is info on the web, and I think on the mother site of this forum, about this, but remember, there is a six month waiting period, once you are accepted. You have to be out of work for six months before the checks start coming in.

That said, I think saving your hands is the most important thing of all. If your work is making you lose your hands, it cannot be worth it! Ask anyone who has lost the use of their hands, no matter the cause, and they will tell you to take care of your hands.

#3 nan

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Posted 23 October 2008 - 03:30 AM


Lin,
Disability is not that hard if you have a doctor that knows what they are doing. Also, I posted information about autoimmune diseases that has been passed to recognize scleroderma as a disease that can cause a person not to work. I am ashamed to say I can't remember the name of the document, but I think Truman said she used it when she sent in her paperwork. I was turned down the first time, but appealed it. I was examined by one of their examiners and got it the second time. I would think with all of the difficulties you have had with your hands that it wouldn't be a problem. I think you should go for it. Private message me if you want. Do you have pictures of your fingers with the ulcers? If not, get some.
Take care,
Nan

#4 Purr

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Posted 23 October 2008 - 04:12 AM

Hi Cin,

If you a do a search on key work 'disability' there is a post titled Social Security. That should help answer some of your questions. There are several of us on here that have been through the process and are receiving disability. Personally, I think Jefa's reply is the best.

Take care,
Christy
Love makes the world go around!

#5 nan

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Posted 23 October 2008 - 05:14 AM

Cin,
My apologies for calling you Lin in my response.
Nan

#6 Annie20

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Posted 23 October 2008 - 07:45 AM

Cin,

The date I applied for disability was March of 2008 and I was approved in August 2008 the first time around. If you have excellent doctors such as rheumatologist, pulmonologist, cardiologist, etc., who can explain your condition on paper and be specific, it isn't hard to be approved. The paperwork was the most difficult because there was so much of it on-line as well as via snail mail, but well worth it! Best wishes of being approved.

Anne
Diffuse Systemic Sclerosis, (Scleroderma). Lung, skin and gastrointestinal involvement.

#7 MaryFanPhilly

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Posted 23 October 2008 - 02:38 PM

Hello Cin,
I was approved over two years ago, six months after applying, and I think one thing that helped me was going to a hand specialist. She took lots of measurements of range of motion and hand strength (or lack thereof) and did a very detailed report. I also agree with Anne, get your doctors on board and let them know this is what you are doing. Mine were so supportive (still are) and helpful. And get copies of everything! The papers that you fill out describing your day and daily activities is also extremely important. When you think about, and document, all the little things that make life with sclero difficult, it should all go into the report. Things that are seemingly tiny, like holding a pencil... or things that are pretty big, like having to be REALLY close to a bathroom all the time- put it all in there. Give them a true idea of what your day is like. Good luck! Love, Mary in Philly
Diffuse sclero; diabetes; hypertension; GERD with Barrett's

#8 sophiebun

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Posted 23 October 2008 - 02:52 PM

I don't doubt at all that toxic solvents cause all autoimmune diseases and cancers. I am on SSDI. The only thing you have to make sure of when you fill out your applications is to just not say that you can't do your present job but to make it VERY clear that your disability makes it impossible for you to do any type of work.

They don't care how sick you are or not, only that you can do NO type of work. Good luck.

#9 cin

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Posted 23 October 2008 - 04:48 PM

I thank all of you for your concerns and very important informatiom. I'm glad all of you have gotten your disability and I will certainly use all of the info give to me.

Thanks again

Cin

#10 Amanda Thorpe

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Posted 23 October 2008 - 05:23 PM

Hello Cin

I am in the Uk ond on our equivalent of your disability. Thankfully here it seems to be easier to get and they pay you straight away.

The form, 50 pages long front and back asked for details about everything including going to the bathroom and what assistance I needed as my husband also gets paid as my carer. Although we laughed whilst completing it it was quite unpleasant to have to breakdown how much time my husband spent doing things like bathing me and dressing me, I felt like a total invalid capable of nothing but being this huge burden on society that needed paying as did the husband for looking after the huge burden on society.

When completing the form remember to do it on worse case scenario, thinking of how you are on your worst days not your good ones.

I hope you get it first time round, you've contributed to the world of work now you need it back through no fault of your own.

Take care

Amanda
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#11 jefa

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Posted 24 October 2008 - 07:43 AM

I believe this is the thread Christy is referring to, though there have been quite a few. We are planning to consolidate Disability Resources in one location very soon.

Social Security thread from September 7th.
Warm wishes,
Jefa

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#12 Sweet

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Posted 09 November 2008 - 04:19 AM

Hi Cin,

I applied over the phone and was approved in 2 weeks. I did extensive preparation for it however. I had all of my doctors write letters, I got all the copies of my medical records ahead of time. I wrote an extensive journal as to what a day was like in my life. Listed all of the things that had changed in my daily life due to my illness etc. I compiled all of that, mailed it to SS so they had it at the time of my phone interview. One of the things you should do ASAP is call in and tell them you feel you are disabled and that you are going to file. This saves the date (I forget the term they use) as you only have so much time to file once you've stopped work. Come to think of it, this may not apply to you because you are still working.

Good luck and if I can help just let me know.
Warm and gentle hugs,

Pamela
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#13 cin

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Posted 12 November 2008 - 06:48 PM

Thanks for the info. The SSA contacted me last week and informed me that I would have to be out on medical leave, or not working to be eligible for Social Security. I will be out on medical leave for another surgery to remove ulcers from seven for my fingers in December. I think I'm going to try applying for workers comp. I did some research on radiation and scleroderma, and in one of the articles it said radiation causes scleroderma, and I'm an xray tech working around and with radiation 40 hrs. a week. I hope this work out because it very hard for me to work now, I'm in constant pain.

#14 Wohali

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Posted 13 November 2008 - 05:32 AM

Cin,

Could you leave work on short term disability, then eventually go into long term disability and then apply for SSD?

#15 truman

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Posted 25 February 2009 - 07:12 PM

Lin:

I do have that new ruling Nan sent to me if you need it. Just send a PM to me with your personal email and I'll attach it. Seems I can't attach on PMs sent through here.
Tru

It is what it is...........

#16 Sweet

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Posted 26 February 2009 - 07:20 AM

Hi Cin,

It seems getting disability is either, hard or easy. I put off applying for two years because I was daunted by the process, and had a negative attitude thinking I wouldn't get it because I'd heard so many horror stories. I finally decided to do it. I had a phone interview, and was approved in 2 weeks. Lickety split, just like that. I kicked myself for waiting so long. Go for it!

First thing I did was gather all of my own records from ALL of my doctors. I then asked each one of them to write a letter of support for me. All did except my rheumatologist (go figure). I also bought a book to help assist me that is written by an attorney who helps people get disability. It really helped me understand the process and how to prepare for it. I feel it paid off. Once I had everything complied I called SSI and asked for an interview. It was as simple as that for me. I even got back pay for 18 months.

I'd be happy to answer any questions you may have or help you along the way. First thing I will tell you is to call SS and tell them you are "thinking" about filing a claim, so they can "save the date". That's because you only have so long to apply once you stop working. (sorry can't remember how long - I think 2 years)

Best to you!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#17 debonair susie

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Posted 26 February 2009 - 08:32 AM

Hi cin,

I can add nothing more to what has already been offfered by the ladies who have posted here.

I was very fortunate, in that my rheumatologist had wanted me to go on disability two years before I actually did. As soon as I asked her, she immediately took care of the paperwork necessary and in no time, I was approved for disability.
As has been mentioned, going on medical leave for your surgery and not having the ability to return to work, will be excellent documentation.

I am so glad you found us and have posted!
This is an awesome community, so full of loving, caring and supportive folks, both men and women who always prove very helpful!

So, I welcome you and hope that you find ease in filing your disability claim.
Keep posting and let us know how things are going, cin?
Special Hugs,

Susie Kraft
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