Social Security Disability - Sarcoidosis

For those having trouble applying for Social Security Disability because of Sarcoidosis, check out the video on You Tube:

go to Social Security Disability - Sarcoidosis Disabiltiy Guide

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Thank you for this link. I signed up for SSD last January and am supposed to hear from SS next month. Ironically, I consulted an attorney's office and the paralegal I spoke to there told me to go ahead and file on my own because she thought I had a strong enough case not to need legal representation.

I have my doubts though. I am afraid I will be turned down and it will take another six months for my case to be heard after I make a second appeal with legal representation. But I guess one has to continue trying.

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I don't understand why so many people are having trouble applying for Social Security Disability. When I went to see my Pulm. doctor after work one day, he checked my O2 level, and it was only 83%. So he told me I had to stop working and go on Oxygen 24/7. He even sent me to a doctor that works for Social Security to qualify the patient for benefits. If your doctor tells you that you cannot work anymore because you need to be on oxygen, wouldn't that qualify you???

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Thank you for this very valuable information.

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Hello Folks,
FYI: It took me four (4) years to receive my disability with several recommendations from different doctors. I also waited until I received my 1st denial to get an attorney. I didn't get approved until the 3rd phase which is the hearing phase. You do receive backpay. If I had it to do again, I would use an organization named ALLSUP. A friend's daughter filed disability in 10/08. I shared with her what I had learned and she also after the hearing just received a favorable decision. But it took alot less time. DEFINITELY check out ALLSUP. Also, contact your Congress person and ask their assistance in moving your file along quicker since there is such a long backlog which SSDI is trying to get undercontrol. Also, there are some other benefits being on disability since we have this awful illness; i.e., no school property tax for home owners as an example even if you are not 65 years old. I hope this help.

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I still don't know why the doctors don't assist you in getting a doctor who can verify that you are disabled and to approve you right away. Four years to qualify!! It's bad enough that we are stuggling with this disease, let alone fighting for benefits. It's just crazy!!

Faithful, are you sure about not having to pay for school taxes even if we aren't 65 yet? I'll have to check into that.

I wish you all the best of luck in getting your disability benefits. Wish I could help more.

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I applied for SSDI on Black Friday, 2009. I was approved at the end of February 2010. My pulmie also suggested that I apply as I have systemic sarc. It took me five hours to complete the online application and I was very thorough. There are several others on here that have been approved in a similar time frame. If your attorney's office thinks you have a strong case, then you'll probably be approved the first time around, as my doc thought I did as well.

Good luck, and keep us posted.


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Hi Mary
Thanks for the info. I just got my 2nd denial from SSD and now have to wait for an appeal. I am using ALLSUP and they informed me it is common to be denied the first two go rounds and the success rate for the appeal is more likely.
All I know is they say I can work in a job similar to my old job as a travel computer analyst - sitting in a chair for 8 plus hours or standing in front of a classroom instructing new employees etc. and I cannot imagine doing this with my current level of pain in my back (osteoarthritis in both back and knees) I could maybe do that job 1 day a week but then would need the rest of the week to recover from it. I am quite discouraged now and again questioning myself on whether or not I am really sick "enough" to get approved at all.
I think now I need to contact my local congressman to help.
Good luck to you

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I wonder if our 'Baby Boom' generation (50's - 60's) is overwelming the Social Security System early because of our Sarcoidosis. I'm not sure how many of us are on this site now, but there are tons of us, and we just represent one or two diseases here. I'm sure that 'they' feel that if you are denied a couple of times, but keep trying, then you really ARE sick!! Who knows? They say to just keep trying, but I know it's hard when you're feeling really crappy or in constant pain. Let us know how you make out on this matter, okay??

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this is a great link.

I might have had my case approved faster if I had got a lawyer at first. I was legally blind in both eyes (because of sarc) at the time of my application. they denied me twice. Got my state senator John McCain to look into my case and it was approved a few months later. the whole process took 2 years.

Now my sarc is systemic. not only giving me severe vision issues but also all other organs except the heart and possibly the brain.

Good luck and prayers go out to all that need and apply for SSD

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Thanks for your input. I can't believe that you were denied even with the loss of your vision, in both eyes!! Man, what do they want from someone? To be dead? Maybe they are hoping we will die before they can approve us. I guess I was lucky to be approved right away, but I was on oxygen 24/7. Is anyone out there on oxygen all the time, and still denied? I wonder.

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I live in GA and have been receiving. I'm told its a Federal thing. GA is usually the last to do stuff. If you have a permanent disability you will be exempted from school taxes. It's a big big help!

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Hi All!
I first applied in Jan of 2010. I received a denial letter in March. At that time, I consulted a Lawyer who agreed to file my appeal. I just received a letter this week for an Administrative Law Judge stating that I was approved. I didn't have to go to trial! I can't imagine why they turn people down so often. Especially when you have Doctors stating you can no longer work. It just boggles my mind. I know that there are many people out there still waiting for a decision. I will keep you all in my thoughts and prayers!!!

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Forgot to say on last message....I'm not 65 and receive the exemption for school taxes.

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Thanks for that information. I'm going to call our tax office tomorrow and see if we can stop paying the school taxes. Good to know.

Good for you. But still, you had to wait over a year. There should be a simpler way. I still don't understand it.

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My wife was diagnosed with Pulmo Sarc in May of 2009. She had filed for SSDI (or SSA, whichever it might be) in November 08 (and been denied), as she had been suffering from the lung issues for the prior 3 years, as well as chronic pain since back surgery some years before, ALSO possibly sarc related, but never looked into at the time because she didn't know what sarc WAS. Being that she had been married young, and raised a child and been a housewife, she had not been "employed" for any great length of time. As a result of this, ALLSUP will give us no assistance, and because we had gotten married, MY income at the time had disqualified her for any assistance even though she had filed before we were ever married. and now that I'm out of work, there is STILL no assistance, other than Unemployment, which is less than HALF of what what I made when gainfully employed, and FAR less than what we need to survive, especially considering we ALSO have no health insurance and every bit of medical care we can get for my wife (which ain't much!!) comes right out of the very shallow VERY empty pocket.

Simply put, it seems to me that our Government will get out of helping anyone that they can, whenever they can, and use whatever excuse they chose, but they'll CERTAINLY help in "humanitarian" efforts that will further their agenda or improve their "public image".

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@dmg8862 In order to receive SSDI benefits your wife must meet the duration of work criteria and the recent work test. These apply to everybody, and it's not as if she is being singled out or it has anything to do with how sick she is. I agree that these programs should be boosted over other government spending, but the simple fact remains that unless people pay in, there is no money to pay out. Given your current financial situation, there may be programs other than SSDI available: medicaid, and SSI (supplemental Security Income), plus state programs. The spouse's income works into the calculation of SSDI, but you have suffered a setback, albeit one I hope is temporary. I wish you luck.

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BTW, if the government shuts down Friday, no new applications will be taken during the the shut down. I don't know what happens to existing applications

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Hi All,

I wasn't going to weigh in on this discussion but decided to any way. First of all, you need to understand how disability social security works. An attorney is not going to get you social security however, they will take your money if there is a up front fee involved.
Yes, we all are sick but here's the deal: Social Security's definition of disability is the "inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment which can be expected to result in death or which has lasted or can be expected to last for a continyous period of not less than 12 months...

With that said, we all may meet that definition however, this is the important part: If you do not meet a social security disability listing, the vocational rules automatically apply to your case. The younger you are, the harder it is to recieve benefits because you could be found to have the ability to do other work, regardless to what that other work maybe. Your residual functional capacity will be evaluated for sedentary work, seniskilled work, etc.

Also, being on oxygen or blind does not make you unemployable. I have worked full-time for many years on oxygen and no, that work was not unskilled, I have a masters and 30 plus credit toward my doctorate. Sarcoid is in the SSA listings, however, one must meet that criteria for whatever body system that is affected. An attorney can not change federal law to make your situation fit. Unfortunately, this may sound unfair but that's the way it is!

In addition, Social Security Disability(SSD) is a Title 2 program and one must have worked a number of years to have qualifying quarters of contribution to the program. Your average wage amount over that period will determine the amount of benefits you recieve. Supplemental Social Security Income (SSI) is a Title 16 program and basically works like welfare! If you have no qualifying periods of work, this is what you get. Household income does affect the amount. SSI is reduced dollar for dollar of household income.

Also, it is not the federal SSA who makes your determination for disability, it is the state run DDS who has a contract with the feds to adjudicate SSA claims. The feds only do a sampling of all cases nationwide to ensure compliance with SSA laws and regulations.

The most salient take away from this is clear and unmistakeable medical documentation.

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Thanks so much for all of the information on this matter. I really appreciate it for everyone on this site.

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Thanks, also, for your input on Social Security Disability and SSI and all of the complicated issues involved in obtaining benefits. I have been in a mind fog for years, probably due to low oxygen levels, but it's hard to manuever through the maze of paperwork and who to contact when you are in pain and just plain feeling lousy. When I had to go on medical leave, I had to start a notebook to keep all of my paperwork in, because if someone called me about something, I was so confused, that I had to depend on my notes and papertrail. I kept a journal of all phonecalls either to someone, or from someone relating to my benefits and what was said. Along with what paperwork was to be filled out, etc.

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Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

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