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Disability Update Report

6 posts in this topic

I was welcomed back home from a wonderful vacation with a letter from the Social Security Administration entitled "Disability Update Report." It is a simple form to see if I am still disabled and to see whether or not they need to do a formal review of my case. This is a one sheet front and back form.


This simple form could be rather tricky for me. I immediately qualified for SSD due to End Stage Renal Disease, caused by the scleroderma. I received a transplant in March 2010 and they want information and records from February 2010.


Question: Do you feel better, the same, or worse?

(Trick question - better because of the transplant, worse because of increase in lung fibrosis and other sclero issues but I can only check one box.)


List the doctors you have seen and the reason why:

(Funny - because they give you three places...since February 2010?!?! I saw 4 doctors last week and 4 doctors this week alone :VeryHappy: )


I had Mohs surgery for squamous cell carcinoma last week and spent the time calling all my doctors and telling them what I need as there is a lot of wait time with this procedure. I am little by little collecting quite a pile of papers. My therapist suggested I hire a lawyer to do all this to alleviate the stress but right now this just involved many phone calls, something I am not thrilled to do but can do, and having various doctors mail me the records.


For those of you who may have gone through this what advice do you have? I do not want to go through an entire review so I am being as thorough as I can. I've read many of your posts over the years about SSD.





ISN Artist

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Hello Miocean


I have never had to go through a review process (am in the UK) and would just give up at the thought of it even though my answer to "Do you feel better, the same, or worse? would be WORSE!"


From what others have said getting a lawyer now may pay dividends later, presumably a disability lawyer would be able to tell you how to answer the question "Do you feel better, the same, or worse?" I would have thought you don't feel better overall because you have swapped kidney failure for lung fibrosis and you have just as many problems as before just different ones.


I so hope they go away and leave you alone!


Take care.

Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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When they see the paperwork I am going to send them I am hoping they are going to just put the file away. I am still diagnosed with chronic kidney disease and diffuse scleroderma with the full package. When I filled out the intitial application I kept on writing, this is really hard for me, I can hardly hold a pen, I have to stop and take a break, etc. When they see what I send them they might say, if she can do this, she CAN work. Double edged sword.


My plan is to gather what I can in the next week and then consult my personal lawyer for advice. So far its just been time consuming calling all the doctors and putting papers they send in a pile. And emotionally and mentally wearing because its one more thing to deal with medically and that is always in the back of my mind.


The next few days I am declaring MEDICALLY FREE DAYS. PLEASE JOIN ME!



ISN Artist

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Hi Janet,


Please don't worry about the review. It's not like you had the transplant and then returned to perfect health.


It is much harder to qualify to get off disability, than to get on it in the first place. Just fill out only the very simple form, in a few sentences. If you are not back to working full time, you are not yet cured.


You still have scleroderma, for pete's sake. One or two sentences is all they need. They really want to know if you are back to work full time, or not. I think we can safely presume, NOT, right? Its really hard to get off disability. You basically have to prove that you are able to work full time, and that you are doing so.

Warm Hugs,


Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099


The most important thing in the world to know about scleroderma is sclero.org.

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Hi mi,


You're on Long Term disability, is that correct, mi? In other words, you'll never be physically able to be out in the work force again, correct?


Bearing that in mind, you may want to confer w your doctor or doctors for their professional input. I would think that your primary doctor would be a great "go to" doc.

My first review, I called my rheumatologist's office, as she was the doctor who did the paperwork for me and was very familiar with what would be required of me; she said that I am permanently disabled, which translates to permanent disablity. My illness will never improve, hence being what they were looking for in my case. The last letter I received said that I would not be up for review at this time.


As Sweet mentioned, you shouldn't have to fret over this...just enlist one of your doctors to help with the best response.


Calming Hugs coming your way :emoticon-hug: s

Special Hugs,


Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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