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Life With Lupus

SSDI /disability


#1

Would love to hear from my fellow lupies… I finally decided to go on disability. I talked with my pcp and my rheumy and told them that I just couldn’t do this anymore (work). My pcp told me that she understood, that I have been having such a time. Anyway, I finally finished my online application for ssdi. I have a lot of the paperwork (office notes, diagnostic tests, blood work). Going to drop that by the ss office. How many of you are on ssdi and did you get ssi also? I am going to apply for ssi to help me get through the waiting period. How long did it take you to get approved? How severe were your symptoms, any organ involvement? Thank you for reading, hope everyone is feeling well.

Cheryl


#2

Getting social security disability benefits is not necessarily the difficult nightmare some will lead you to believe. If done properly, it can be achieved in a reasonable amount of time. I think it took me about two months, give or take a week or so.

I had the aid of a law firm that specializes in disability, which I am sure helped considerably. But the key to it all is the merit of your case: in short, do you deserve to be on disability?

I can't speak to your case, but if your lupus greatly impacts your ability to perform your job you should be and will be considered strongly. The key is to make a strong case in your testimony to the disability people. Make them aware of every illness you suffer from, and make sure they know of all the symptoms that cripple you and how often, etc.

To give you an example of who might get accepted, I suffer from lupus, interstitial lung disease (which has stolen 70 percent of my lung capacity), bipolar disorder and various vertebrae fractures as a result of high volumes of prednisone consumed over the last four years. I also battled lung cancer earlier, but overcame it with six months of chemo.

Your doctors' testimony obviously is crucial. They should support your claim if you are truly a candidate for disability. Above all, don't fret the time it takes to get this done. Just let the process take its course and you should be OK.

Good luck,

Thomas Franklin


#3

Thomas Franklin thank you for your reply. I hope you are doing well these days.


#4

Could be better Asian girl. Bipolar is keeping me down of late, but still battling. Hope you are well.

Thomas



asiangirl said:

Thomas Franklin thank you for your reply. I hope you are doing well these days.

#5

It took me four years and sixteen different diagnoses to get approved. My youth was a large deturent to my being taken seriously at thirty two no one wants to admit that working is no longer possible. I still don’t like it at thirty six but i know I can’t always use my hands or walk all the time so I’m not safe to do my chosen work any longer. I also know that my anxiety disorder makes it immposible for me to sit in a class room. Not to mention the pain. I broke down in front of a judge two lawyers and a court reporter the day I had my disability hearing. It is best to have an attorney first they handle everything. Good luck


#6

@asiangirl,

I was told the older you are the easier it is. of course a lot more goes into that. I believe in order to get SSDI, you would have to have worked 40 quarters which equates to 10 years of paying into SS. When I applied I was working for the Federal Gov. Therefore I had to apply to them first and if excepted then I was allowed to apply for SSDI. I was excepted from the govt. I applied in March 2000 to SSA. My husband died the next month. From that point it took about 6months. I did get back pay from the on set of the date that I applied. I was 48 years old at the time. Just make sure you make an extra copy of every single paper that you give to you lawyer or SSA. They had lost my complete file. Luckily I had made an extra file for myself. I know how gov is. Good Luck to you.


#7

Hi,
I have the best outcome for Disability. I’m in Oregon, applied in April and got approved in September. I am 59, so I’m sure that played a part in they fast approval. I gave them all my lab work and all my doctor did was write a brief note saying I had Lupus and my ability to work in the future was in doubt. I don’t have organ involvement, so I emphasized my compromised memory and inability to manage any kind of complex tasks, the exhaustion, sleeping 12-16 hours a day and the 2 bouts of pneumonia I have had since diagnosed in Oct 2013. I only had one exam from them, more of a psychologist than doctor. She checked my mental state and did some screening tests that showed my memory is not all there. I had emphasized to her that I have worked continuously since I was 16 and didn’t like the fact that I just couldn’t do the job any more.
I felt that was important because I didn’t want them to think that I wanted not to work and live off the government, but I didn’t have a choice. I got approved about a month after that appt.
I was not eligible for SSI, I think because I dont have dependents.
Good luck!


#8

@Nikki@asiangirl,

My adult son, 34 gets SSI. He also has Auto immune problems. Its a small amount due to the fact he hasnt work as long as I have. I believe SSI is Supplement Security Insurance which means you have not work long enough to pay into the system or you need supplement insurance, because you may be eligible for medicaid. Im going off memory and Lord knows mine is perfect. (due to lupus).

You can look up SSA.gov and check it out.


#9

It took me 1 year to get my disability I got ssi first but when the ssd came in I had to pay the ssi back. I could not work I had bipolar disorder at the time. I'm 53 and worked up until 2005. I even worked less than part-time while on disability and almost lost my disability but then I was diagnosed with Lupus and Kidney disease stage 3 and they continued my disability. I really wanted to continue to work. If your case is complicated then get an attorney. But I did not want a attorney. He would have gotten most of my back pay. So I read about disability and filed myself. If you get turned down then get an attorney to appeal. Follow through and follow-up on medical records and doctor's responses. Keep checking and checking and checking.


#10

I also filed myself. Everyone is turned down the first time. I had ordered a book from the lupus website that tells you how to file step by step. I did have to pay back my work after SSDI had started. That first check is paid in retro, and I forgot I had to do that, so I spent most of it. This is only because my federal job require that you file with them first. So they're check had began first. So the first year, my social security check had a deduction every month until paid back. I'm sorry this is sounding so confusing. It has to be easier if you don't work for the feds. Social Security will make your check retroactive as of the onset of illness, according to what doctors say. Good Luck

Byrd said:

@Nikki@asiangirl,

My adult son, 34 gets SSI. He also has Auto immune problems. Its a small amount due to the fact he hasnt work as long as I have. I believe SSI is Supplement Security Insurance which means you have not work long enough to pay into the system or you need supplement insurance, because you may be eligible for medicaid. Im going off memory and Lord knows mine is perfect. (due to lupus).

You can look up SSA.gov and check it out.


#11

hi cheryl, i have been on ssi for 20yrs, i am 58 now..it took them aboout 6 mos to approve me i did not have enough work hoours to get social security,,,,,now i fear they are alot more picky, so if they deny you, get a lawyer that specializes in social security, on contingency, and then they will approve you, it sounds like you have all your ducks in a row, the more doctors say what you have the better, but if your rhumy puts yoou out you should be approved, the most you can get on ssi, is 720.00 per month, that is what i get, if you have enough work hours u will probably approve you for social security then what you get per month will be based on that, and also remember those people at ssi and social security they are their to deny you, so never volunteer any info to them.......and remember don't give up, purrs..catspaw1955


#12

Hi Byrd - everyone is not necessarily turned down the first time - I wasn't. I was approved 5 months after I applied myself - no lawyer.

Nikki


Byrd said:

I also filed myself. Everyone is turned down the first time. I had ordered a book from the lupus website that tells you how to file step by step. I did have to pay back my work after SSDI had started. That first check is paid in retro, and I forgot I had to do that, so I spent most of it. This is only because my federal job require that you file with them first. So they're check had began first. So the first year, my social security check had a deduction every month until paid back. I'm sorry this is sounding so confusing. It has to be easier if you don't work for the feds. Social Security will make your check retroactive as of the onset of illness, according to what doctors say. Good Luck

Byrd said:

@Nikki@asiangirl,

My adult son, 34 gets SSI. He also has Auto immune problems. Its a small amount due to the fact he hasnt work as long as I have. I believe SSI is Supplement Security Insurance which means you have not work long enough to pay into the system or you need supplement insurance, because you may be eligible for medicaid. Im going off memory and Lord knows mine is perfect. (due to lupus).

You can look up SSA.gov and check it out.


#13

I applied at age 43, had by that time a massive stroke, lupus with organ damage including heart, lungs, liver and a host of other problems not to mention 27 seperate hospitalizations in 2 years,with 7 specialists writing letters on my behalf that I could no longer do any kind of work ssi sent me to their doctor for an exam, and a psychiatrist, surprise claim denied reason being that I could still do some type of work, outraged,angry and completely dumbfounded not to mention I had been unable to work for a year before I applied so I was bankrupt as well I got a lawyer, sent copies of everything to them, never give up your originals, after 2 years they sent me back to the same doctor as before he was astonished to see me again he wrote that given the number and severity of my medical problems it would be impossible for me to do any kind of meaningful work, he couldn't believe they denied me, he wrote an even stronger letter and more detailed of my conditions and again recommended I be found unable to do any kind of work, I was finally approved big deal, by then I had spent down all the savings, cashed in life insurance, profit sharing just to stay afloat, it actually took a total of 2 years and 8 months before I got my first check, the funniest part of all this they determined my date of disability to be a month earlier than when I originally applied in May 05, and to add insult to injury they only gave me 12 months back pay, there's no rhyme or reason to their system, my friend that has late stage parkinsons got denied the first time and approved the second time this guy worked all his life, another person we know was diagnosed with HIV got it automatically, same thing used to happen for drug addicts and the mentally ill who can make sense of it! I just went through a review with ssid, I didn't get a raise but at least they still consider me eligible for benefits. I think the amount of bogus claims has made it really hard for those of us that truly need it. sorry for the rant, good luck to you


#14

Unfortunately you don't get disability just because you don't feel well and organ damage also doesn't guarantee The criteria is whether you are physically capable of working ANY job not just the job you used to do Being capable of working is also determined by whether you would be capable of earning a total of about $1000 a month I don't know anyone who can survive on that income but that's the criteria.


#15

I have a lawyer and was denied the first time because I didn't have enough information since I wasn't able to see a doctor in over a year, plus my age of 43 goes against me. Now I am in the reconsideration phase, and they want more info on ADL. I wrote my update (8 pages). My doctor was really nice and he included in his notes how he doesn't see how I am able to work with all of what I have going on. So my lawyer told me that almost all people get denied in the reconsideration phase, and then after that you go to a hearing (which is scaring me to bits!!! I'm afraid I'll cry my eyeballs out). Sorry I don't look as sick as they want but they don't understand what goes on inside of us. And I have worked since the age of 16 so I think I have enough credits. Good luck to you and hopefully everything will go great for you!