I posted back in December about feeling disabled at work, and have since found a job with a different company which has far better pay, but is even more physically taxing than my other job. I am starting to have brain fog daily, speech problems, and making mistakes. I have a hard time walking straight and collapse at times. I am coming to the conclusion that no matter how smart or qualified I am, it doesn't matter because Lupus is taking me down. My quality to life is bad because I fall out when I get home and can do nothing else because my energy is already zapped.
Does anyone have advice or stories to share about applying for disability? I have SLE and fibro.
Thanks for any words of wisdom. Really needing some guidance, this is a big life decision.
I am in the process of trying to get disability. I applied online, and was denied because they "couldn't get all the necessary records" from various hospitals and doctors. Now I have a lawyer - and I still don't trust them to get all the paperwork! My advice is to get your records yourself, and send in copies when you apply. Don't expect Social Security to have your best interest in mind.
I can relate.I suffered from fatigue and brain fog long before being diagnosed with sle. I used all my energy at work and collapsed unable to cook,clean or parent my 3 children. I went from working fulltime with benefits to one morning a week. It happened slowly but surely. I even had a stroke and continued struggling and undiagnosed. I am disabled now but only after qualifying by being unable to make what social security considers a sustainable able income. We had to refinance the house when we were 7 years from paying it off. A new 30 yr. Mortgage.
I suggest you start applying before your relationships suffer more than necessary. It can become overwhelming trying to deal with paperwork on top of daily fatigue. Good luck and try not to let it run your life. Your family can be a good support system for you if they understand. This site is wonderful support from people who have been through the same things.
I'm sorry to hear you both have had such a hard time. I have heard applying can be a long road. My question is, how are we supposed to live while waiting for disability to kick in? They told me I had to make under $1000/month, but that won't pay my bills. I don't know what to do.
Start the application process right away. I applied on line and was approved in 6 months. I didn’t need a lawyer. Emphasize the things that cause you to be unable to work, like the stamina and memory issues and constant need to take sick days. Careful in what you identify as the “date of disability” as that will be your starting date. Once approved you will get retro pay to that date, even if you were trying to work.
I had given up my full time stress filled job and tried a part time job that was relatively easy and failed miserably because I could never remember the instructions they gave me. I think being unable to do that helped get my fast approval - they saw I was really trying to work but was just unable.
I never collected disability (too close to retirement and eligible for SS). I did collect state disability while I was working on and off. My employer terminated me due to not getting enough work done, blah, blah.
I can really feel the exhaustion and the symptoms your listed. When I was working, I would come home and collapse and on Saturdays I slept most of the day and night. It was uncanny that I never suspected that anything was amiss.
This was the start of my "autoimmune" journey. Hope this helps.
Hi IGUESS didn't have a hard time getting disability insurace.my husband handled all my paper my long term insurancetold us to call alsup also my dr nurse filled a lot out. Alsup is another insurance for disability my husband did all my paper work I was to do any thing at that time within 2 weeks I was getting disability I think my long term insurance didn't want to pay as much as they did you can talk to a lawyer to help gey your insurance sorry you are having problems with long term insurance and disabiliy I got a great deal .my long term would have to pay me more money but wirh alsup they didn't have to . I was to sick todo anything but get a good lawyer it makes a big differece I am now getting s.s insurance with disabity insurance also they didn't even talk to me at akk,only my husband good luck my husband still works let me know how things go on with you
I was on social security disability until I turned 65 then went to regular soc sec. I did get a lawyer and it was good I did as I was doing it all on my own and not able to think clearly. At the time my hubby didn't understand how bad I was. I have found that most of us kind of gloss over some of our issues. The lawyer I had nailed everything down immediately and actually made me realize how bad I was. I kept pretending to myself that certain problems were just temporary. Funny, I still have those temporary problems 20 years later. So don't give up and get a SS Lawyer to help if necessary.
It depends on what state you are in. I live in IL. I was diagnosed with Crohn's in 2006 but not diagnosed with Lupus and Ra until the year 2010. I started the process in 2007 but didn't get approved until 2009. I had short term and long term disability from work but it didn't make it easier. The only thing that they did was provide a liaison to help with the process. I can tell you from experience that they will try not to approve you but don't give up. They denied me 2 times and then got a letter I would have to go to court. Five days before my court date I got a phone call and I didn't have to go to court they approved me. I think they do all of this to see who really needs out and hopefully not give people disability who just don't want to work. Some people don't like lawyers some people do. That is a personal preference. I would say if you have the time and patience do it yourself otherwise get a lawyer.
I know in AR it is a long process. I agree you need to get you an attorney normally you can find one that will not charge unless they get you approved and then what they will charge is the back pay you will get from Social Security from the day you first filed for the disability until you get approved .One thing I would advise you is to quite work ASAP. no matter what shape you are in if they see you have been able to work than they feel you can continue working. Matter of fact check in your state to see if there is a certain amount of time you have to be off from work before you can apply. I know there is here , I do not know how they expect a person to survive but they do.
Good luck, I pray you will be able to get on Disibility soon.
Persoal stuff. You have to have worked a certain amount to get credits to qualify. Do it now, it does take a while if you live somewhere with a huge population of seniors. I had no trouble, though I was sort of freaked out by the whole thing. Your rheum and other doctors will write letters so tell them to expect the request. The doctor is probably a deciding factor.
When you fall, are you lightheaded or do you legs stop working or what? That worries me, what does your rheumy think?
You might be able to work at a less stressful demanding job, but your body seems to be asking for rest. I think you will feel much better when you stop working, even of you have etall the same health issues. You really aren’t the smartest and best worker when you can barely function- I was let go (fired) for being to sick to work. I was to sick to fight it. And I didn’t get all better when I stopped, but I could sleep more, it didn’t matter if I was spaced out, etc. lupus changes the possibilities in your life. It’s not all bad, but it isn’t the same.
You do have a 5 month wait with SS
between when you quit working until they start paying disability. I forgot to say, you can apply online. I did. Then they sent me regular paperwork.
How do you manage to live in between quitting work and getting the disability? Like paying bills, groceries, etc? I am worried about getting by in the mean time.
Jane S. said:
Persoal stuff. You have to have worked a certain amount to get credits to qualify. Do it now, it does take a while if you live somewhere with a huge population of seniors. I had no trouble, though I was sort of freaked out by the whole thing. Your rheum and other doctors will write letters so tell them to expect the request. The doctor is probably a deciding factor. When you fall, are you lightheaded or do you legs stop working or what? That worries me, what does your rheumy think? You might be able to work at a less stressful demanding job, but your body seems to be asking for rest. I think you will feel much better when you stop working, even of you have etall the same health issues. You really aren't the smartest and best worker when you can barely function- I was let go (fired) for being to sick to work. I was to sick to fight it. And I didn't get all better when I stopped, but I could sleep more, it didn't matter if I was spaced out, etc. lupus changes the possibilities in your life. It's not all bad, but it isn't the same.
You do have a 5 month wait with SS between when you quit working until they start paying disability. I forgot to say, you can apply online. I did. Then they sent me regular paperwork.
I had Lupus for almost 20 years with mild symptoms but controlled pain. Then I developed a serious blood disease which complicated things. I had difficulty working but continued until I was let go from my job.I was 60 at the time and decided to apply for social security disability.I asked my doctors to write something for me about my dianosis and I applied on July 1, 2010 and received an acceptance letter in early August of the same year.I was suprised that it happened so quickly.It may have been because I was so close to retirement age.I would say don't give up ,that's what they want you to do.Many people have gotten an attorney to help them.Good Luck
Idioskosmos said:
I am in the process of trying to get disability. I applied online, and was denied because they "couldn't get all the necessary records" from various hospitals and doctors. Now I have a lawyer - and I still don't trust them to get all the paperwork! My advice is to get your records yourself, and send in copies when you apply. Don't expect Social Security to have your best interest in mind.
thank you all for your responses. I appreciate it very much. I'm not sure what to do yet but I like hearing from those who have "been there, done that"
I to have been through this I had to fight for my disability and I won however my Dr. are now refusing to sign my papers. This can be a long journey but try not to get up, fight this thing with all you have. Make sure your prepared for being off work cause its a lot that going to come at you mentally.I pray often and I try and push myself as much as I can but pa attention to your body. It also may be time for you to get a attorney to help you with your disability I was stressed out and got behind on everything and almost lost every thing until I got my attorney. I will be praying for you so don't give up be blessed godsgirl66
I have tried because I receive a chemo drug every month that weakens my immune system and they also had found a blood clot in my head and I have a fluid fill up in my head also. I was denied every time but I suggest you keep trying as long as you prove you are physical and mentally unable to work they are legally not allowed to deny you because lupus is a disability
thank you so much your words are a blessing. godsgirl66 said:
I to have been through this I had to fight for my disability and I won however my Dr. are now refusing to sign my papers. This can be a long journey but try not to get up, fight this thing with all you have. Make sure your prepared for being off work cause its a lot that going to come at you mentally.I pray often and I try and push myself as much as I can but pa attention to your body. It also may be time for you to get a attorney to help you with your disability I was stressed out and got behind on everything and almost lost every thing until I got my attorney. I will be praying for you so don't give up be blessed godsgirl66