Social Security - US

For everything and anything else not covered in the other RLS/WED sections.
ViewsAskew
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Social Security - US

Postby ViewsAskew » Fri Oct 12, 2018 12:18 am

With the recent fibro diagnosis, I am rapidly coming to the conlusion that I will never work full time again. I hurt so much so often, the fog is much worse than with RLS alone, and it also hurts my sleep. I really didn't need that. But, none of us do, do we?

At any rate, am wondering if I should try for Social Security disability.

Does anyone know the drawbacks? I am a minimum of ten years from getting full benefits. It must affect that, I'd think. I read a bit, but not much. It depressed me to even consider it.
Ann - Take what you need, leave the rest

Managing Your RLS

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sleepdancer2
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Re: Social Security - US

Postby sleepdancer2 » Fri Oct 12, 2018 2:13 am

I filed for disability at age 53. Took me 3 years and was turned down iniitally and on appeal. Had to take it to a hearing with attorney representation. My attorney said it goes easier for those already at least 55, although I know someone else who had the same trouble getting approved and she is 58. Was on Medicaid in the interim. It is really hard to get approved, especially if you try to work some up till approval. In my case it didn't matter that I was destitute, I simply could not work. I would not have been approved for any one of my diagnoses, but their combined effect caused me to meet their standard for disability. It helps to have a doctor who knows the system and how to document your illness effectively. That needs to be happening with each visit as you lead up to filing. Your ability to function on a job needs to be so unpredictable that no one would would hire you with such unreliability. I fought quitting and caused myself great duress for too long. It did a number on me mentally for a while - had worked since I was 14. Good luck with whatever you decide to do.
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Rustsmith
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Re: Social Security - US

Postby Rustsmith » Fri Oct 12, 2018 3:45 am

Debbie filed for SSDI when she was 30 due to MS. It took 2 years of struggle before she was finally approved. At least at that time, over 90% of all applicants are turned down the first time around. For the first appeal, at least 50% were turned down at that stage. For the second appeal, you have to hire an attorney and over 90% of appeals at that stage are approved. Once approved, you get benefits back to your original application date and the government pays your attorney fees. In our case, the Social Security judge sent her file back to the second level examiner with a note to reconsider. That means that we got stuck with the attorney fees, but Social Security still held onto 50% of her benefits for another six months "just in case" her attorney made a claim. Even the attorney couldn't get the money freed up.

The application process was long and arduous. They would send a postcard that said to call or come in. When she called, they said she had to come into the office. When she went in, the questions they had were things that could have been handled over the phone. So, basically, they put as many impediments in your way as they can in order to dissuade you from going all the way through. Debbie had to see one of their doctors at one stage. He was very kind to us, but we say lots of construction workers whose exam consisted basically of: if you could hear your name called, your hearing is good. When you walked into the office, you could obviously move around without too much pain. You are not in a cast and your arm isn't in a sling, so you are obviously fit to return to work. So, application denied.

The amount of money you get is based upon what you have paid in, the number of quarters that you paid in and your age. You receive that amount of money with the inflation adjustment from that point on. When you turn 62, you simply change from the Disability fund to the Old Age and Survivor fund.

After you have received SSDI for 12 months, you are automatically enrolled in Medicare. If you opt into Medicare B, they deduct your contribution from your monthly benefit check. If you don't, then you only have hospitalization and cannot opt in again until you turn 65 or your spouse retires.
Steve

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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: Social Security - US

Postby badnights » Fri Oct 12, 2018 5:48 am

Oh Ann. How depressing it must be for you.
Start the process now, while you have a bit of energy.
Beth - Wishing you all restful sleep tonight
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stjohnh
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Re: Social Security - US

Postby stjohnh » Fri Oct 12, 2018 1:49 pm

A friend of mine got his son on SSDI, but as others have said, long and difficult process. After it was finally approved, my friend said the thing that helped the most was getting an attorney that handles these cases frequently.
Blessings,
Holland

Polar Bear
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Re: Social Security - US

Postby Polar Bear » Fri Oct 12, 2018 7:52 pm

Ann, Pretty sad to think that that you are having to think of this. Just shows what devastation RLS can cause.I'd be with the others, start an application now with an experienced lawyer.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: Social Security - US

Postby ViewsAskew » Sat Oct 13, 2018 12:11 am

Well, the plot thickens. Today my blood work is back. My ferritin is holding (decreased 20 points, but still around 300). But, for the first time in my life, my total iron is low. That seemed odd as I am officially in menopause as of this month. So, went to see the next set of tests. SED rate is high, ANA - IFA is positive, the ANA pattern is homogeneous, and the ANA titer is present...so off I go for a lupus panel.

Guess it would explain the joint pain, but not the general muscular pain. And, looking at the 11 symptoms, it seems unlikely to me - no butterfly rash, no pericarditis, etc. But, something is clearly going on. Fibro is not a disease of inflammation (lots of conflicting info out there, but several rheumy orgs say it is not) or autoimmune, so unlikely it explains it, either. Not sure how much Hashimotos could account for all of this since I was hypothyroid a few months ago - no cause was pursued.

So, before I do anything, I guess I go get more blood work.

Sort of not funny...my birthday is next week - not the birthday present I would have wanted, but no such results are ever desired, are they?
Ann - Take what you need, leave the rest



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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
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Re: Social Security - US

Postby Polar Bear » Sat Oct 13, 2018 3:11 pm

Views - sorry that you got these results (tho good about the ferritin) leading to more tests and investigations.
I am always hopeful that an unusual result is a blip...... and will be ok next test, or following a let's wait and moitor period.
However, yes, something is going on.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

badnights
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Re: Social Security - US

Postby badnights » Sat Oct 13, 2018 6:06 pm

The worst part is not knowing what it is.
Beth - Wishing you all restful sleep tonight
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Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

ViewsAskew
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Re: Social Security - US

Postby ViewsAskew » Sat Oct 13, 2018 6:24 pm

The ANA titre was 1:80 - 10% of people without an autoimmune have it at that rate. And a homogeneous pattern is not that indicative of anything, either. So, it actually could just be random chance or that I had the start of a cold when I took it.

I looked into the Soc Sec claim process and it isn't that much easier for lupus than for fibro or RLS, lol, so I'll just keep the RLS :-).
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.


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