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Klittlewolf 11-02-2005 05:52 AM

Anyone with lupus on disability?

I'm new to the forum, although I have been reading it for awhile. I am going to start filling out the application for disability. I have lupus, fibro, back and neck injuries. For those on disablity how hard was it to get it, how long did it take, and how many hoops did you have to jump through? I've heard it takes some as long as 7 years to get approved! I know social security make it hard; supposedly to weed out those that don't need it. Still for those of us that do it sounds as if it can be a long and tiresome process. Thanks for your help!


wintersun 11-05-2005 03:38 PM

Re: Anyone with lupus on disability?
Yes, my husband has it, but he also has the blood clot disorder- which he got approved for that first, then when he had a bunch of organ shut downs, pnemonia, and a stroke, etc, long hospitializations, he got approved for the rest fairly quickly.(Disability w/ SSI-Medicaide) He is doing much better now, with no probs in about 3 yrs now. He's in some kind of remission,
Sad to say, but the worse your medical records are, the quicker you get it. And if it is considered life threatening, etc. Plan on 6 mos to 2 yrs, hire a lawyer after the third rejection if you have to. GOOD LUCK! It is tougher these days...You get back pay from the day you filed. Be persistant and keep at it!!

jasiusmom 11-27-2005 05:15 AM

Re: Anyone with lupus on disability?
Hi. Good luck with you disability ap. Make copies of everything you send in because you will get additional paperwork that will ask the same questions. My husband has neuropsychiatric Lupus---Lupus effecting his brain--causing neurological and severe psychiatric symtpoms. He got approved that first time. I think his doctor's really helped. Make sure all your doctor's are on board and willing to write compelling narratives for you.

Take care!!!!

jennyback 01-13-2006 08:48 PM

Re: Anyone with lupus on disability?
I recently talked to a lawyer about disability with lupus because I've had strokes and other damage.He told me I had to be out of work for at least 1 yr straight but I'm not giving up.Oh yea I asked him if he was going to financially support me for a year got no reply. Keep trying dont take no for an answer thats what they hope for is for you to give up. Hang in there and I'm here if ya need to talk

debijo 01-16-2006 06:22 PM

Re: Anyone with lupus on disability?
[B]I'm 51 years old and have lupus, rha, and thyroid disease but when i applied for social security , honestly they were more interested in the lupus than anything else. i was denied 3 times and should have gotten an attorney . I was determined because i knew better than anyone how i felt but i also had all my medical records . I did have an attorney at one point but she did not even know when my hearing was so , needless to say, i fired her. It was too late for me to get another and so i went to my hearing alone and i tyold the adm law judge the truth . I got 4 years of back pay although i fought them for 6 years . in the end, i just wanted it over. if you can get a lawyer who cares and can give you the time you need , get one...I don't recommend fighting them alone..hindsight is 20 20 though. good luck and never give up...

handmade_n 01-22-2006 05:38 PM

Re: Anyone with lupus on disability?
Well, in case it helps anyone, I'll post my experience, too. :)

I've been many things. Over the years, as my Lupus progressed, I tried time after time to "reinvent" myself. I started off as a secretary, and then I went back to school and got my LPN license. About halfway through school, I started having neuro problems. Although I aced every test without studying much, in practice I was having more and more memory problems.

During my short (5 years or so) stint as a nurse, my health plummeted, both physically and mentally. I couldn't tolerate the 12-hour shifts I had, and my memory was getting worse and worse. Everything was affected, even my balance. When a patient asked if I was drunk, I knew it was finally time to seek medical help. :eek:

A neurologist, who initially wavered between Alzheimer's and other dx's, finally diagnosed me with Temporal Lobe Epilepsy. He put me on antiseizure meds, and it did help some, but my memory was still being affected. Now my driver's license was affected. Every year, the doctor had to sign off on my license. :(

Eventually, I realized that I should not be in charge of someone's life, so I quit nursing. Vocational rehabilitation sent me back to school, again, for computer programming and networking. I did very well in the small trade school, acing tests, testing out of some courses, and adding advanced courses instead. I even ended up substitute and assistant teaching. I thought this was a turning point for me.

However, out in the real world as an IT Director for a food distribution company, I could not keep up. I got overwhelmed easily, and the more stressed I got, the worse I felt physically. I constantly said I felt hit by the proverbial Mack truck. I started missing more and more due to many doctor appointments and days where I just couldn't get out of bed. I would get confused in conversation and felt like an idiot. It was during this time that I got the official diagnosis of Lupus by biopsy and tests. :rolleyes:

After that company laid me off because they were going out of business, I decided I'd look for a non-stress job. A friend of mine was leaving his bookkeeping job (accounting had been part of my degree) and said his job was cushy and relaxed. I took it and loved it at first. I had a great boss who was laid back, understanding, and we had a love for animals in common. He even would bring foster kitties to work, and let me do it, too. I had my own office where I could turn off the flourescent lights that bothered me and bring in softer lighting. :D

However, I still got sicker. I ended up in the hospital several times... for agonizing headaches where they'd put me on morphine drips, for intestinal infections, for tests, for whatever. I missed more and more work. And my brain seemed to jump ship. I kept messing everything up and had to spend 3 times the amount of work on each task. People would ask me questions and I had no idea what they were talking about. I worked really hard at not letting anyone know just how bad my mental status was. I took the books home every night trying to catch up, to fix my mistakes, to figure things out. I'd go to work every day and things were being cut off, but I just knew I had paid them. However, I hadn't. Eventually, I lost a large amount of money and had no clue how. After months of trying to fix every thing, putting my own money into the deposits to undo my screwups, the stress got to me. I was hurting, I was exhausted, and I was losing my mind. I kept a facade that everything was fine in front of my coworkers, my family, my friends. I think that was the most taxing of everything. I just couldn't concentrate or remember anything. I thought I was crazy. I couldn't see how anything would ever change. The doctors couldn't fix me. So I started thinking constantly about suicide. I figured it was the only way out. :nono:

I didn't intend to spill all this out, but since I have, eventually I did try to kill myself. I ended up in a psychiatric hospital in a fugue. :dizzy:

Since then, in addition to the Lupus, I've been diagnosed with fibromyalgia, APS, organic brain syndrome, organic affective disorder, and a whole slew of other things. The "organic" part means that it's a result of the CNS lupus.

I didn't want to go on disability. I thought I'd die in a back room, worth nothing to no one. But finally I had no choice. Of course, I was denied the first time (80% are). I appealed, lawyered up, and my psychologist wrote a narrative to the SSA that told just how screwed up I am.
When I was awarded disability (it took a year and a half), the 16-page letter was full of my psychologist's narrative, verbatim. He won my case for me. Though my lawyer really did nothing, I think just having his name on my file helped, too.

I tell you all this to emphasize how important having your doctor write a narrative can be. Jasiusmom brought that up in an earlier post, and I am behind her 100%! [/B]

[B]Because we are okay one day and feel like dying the next, the narrative must say that you are unreliable. If you have CNS symptoms, make sure they are addressed![/B] I'm toying with the idea of posting my pdoc's narrative to see if it would help you, but I'm not sure I'm ready to be that transparent on here, lol. :p

I'm still sick, but not having the stress of working really helps my quality of life. At this point, I could not keep a job. I was fighting to stay working, but this was really the best option for me. I'm not in a back room growing old. On my good days, I get out there and contribute wherever I can. I have really bad self-esteem issues, but I am working on them. I still have stressors (such as my Dad's Alzheimer's), but I could never handle the stressors I have AND the stressors of a daily job.

I hope spilling out all of this helps someone. I wish I had heard this before my journey. If this helps you, please let me know. I am writing a book and need all the encouragement I can get, lol. ;)

Good luck in your journey! :wave:

debijo 01-22-2006 08:10 PM

Re: Anyone with lupus on disability?
wow , thanks for your post...i thought it was me and i was just a little nuts. i was forgetting things, in the middle of conversations, i forget what i wanted to say or just forget i was even saying anything and would get totally embarrassed. i was always very good at spelling and reading and painting and somehow it got lost..i never knew why i could not remember certain things but i knew something was wrong . everyone said it was my thyroid disease but i did not think so. when i am having a conversation with one of my kids or whoever, i try to keep it in my head what i want to say just in case i lose it there before i can say it..I also thought of suicide many times and even recently too. i have sle lupus and RHA too. i hate the meds and feel like an idiot if i forget whether i have taken them or not and have to have that daily pill box filled. once i was babysitting and i walked right out of the house drove down the street and forgot to take the baby with me , he was in the house in a swing . thank god i saw the neightbor and she asked where he was and then i went back and got him. that was the end of me watching any little children , i just did not trust myself and everyone thought it was so funny , except me...i was mortified because i had no idea what was wrong . it is terrible to have these diseases and worse if nobody understands or doesn't want to ..thanks for posting that it was very helpful for me to read it ..

lar2much 01-25-2006 04:16 PM

Re: Anyone with lupus on disability?
I don't know if anyone here is military, but I WAS...They kicked me out and put me on temp retirement and told me VA has to care for me. As far as State disability, my state said NO to Lupus and Yes, to connective tissue disorder. However, since the military is paying temporarily. I'm not authorized to get 2 government payments!!! Has anyone heard that before?

handmade_n 01-25-2006 05:23 PM

Re: Anyone with lupus on disability?
Yes, my Dad's on the VA, and he can't get one of those new medicare plans, because that would be double-dipping in government benefits. I would guess that crosses over to disability payments, too.

Jellen 02-01-2006 10:09 PM

Re: Anyone with lupus on disability?
Handmade n- Thank you for posting your story. It sounds somewhat like mine. I was diagnosed with lupus 11 years ago. At the time I was working as an RN. I was having so many neuro symptoms that one of the Drs. at work thought I might have a combo of lupus and MS, or lupoid sclerosis. However, my dizziness turned out to be cardiac in origin from a heartrate up to 225. I also have had memory problems for years. I was diagnosed with an affective disorder 32 years ago. At that time I had pretty severe OBS symptoms also. I was always getting lost. I suspect the affective disorder is organic but who knows maybe I'm just nuts. When I had to apply for disability I was having mostly heart, lung, neuro, and iritis symptoms. Plus the usual pain and fatigue. I was sent to a disability Dr. He detected tachycardia at rest which my Rheum had missed. I was given disability the first time. I was surprised. I knew I was way too sick to work but I had heard of people sicker and who had been in and out of the hospital who were denied. I have since been to one more disability Dr. and the disability continues. Anyone who has lived with me in the past 11 years, which would be my mother and my husband, say that I am not able to work. I did a few hours of light housework on Monday and Tues. I couldn't get out of bed all day. And Monday night I was short of breath. I have possible symptoms and signs of sarcoidosis, per chest xray, ankylosing spondylitis, and Addison's disease. However I have yet to receive a diagnosis of anything but lupus. I guess once the Drs. see lupus on my chart they can't see past it. I would give anything to still be working as a nurse. I have grieved for my lack of ability to work any more. I know there are others much sicker than I am, with lupus and other diseases, but it still is hard to not work. Also my mil had severe Alzheimer's and lived with us for 3 and 1/2 years. I was the one to get up with her 3-5 times a night and change her diapers. Yet lately my husband is telling me that I am lazy and all I do all day is puzzles. I'm not lazy. I am sick.

builder 02-13-2006 09:28 PM

Re: Anyone with lupus on disability?
I'd get a lawyer right away if they deny you. My friend went three years trying to get it and was denied at every turn. She spent at least four months in one year in a hospital for a swollen heart, pancreas, infection etc, all Lupus related. Her legs arteries were closing and these jerks at the social security office told her she can still work at her old job as a waitress. Well it finally took the amputation of her leg for her to be approved.

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