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Disability for Lupus Patients
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Disability for Lupus Patients

I went to my Rheumy  today and he suggested that I need to go onto disability because my disease is starting to advance.  My creatine level was elevated and my sed is up to 60 my ANA was high, he didn't tell me what it was and I didn't ask. Both C3 and C4 were abnormal.  I have had 2 serious bouts of Lupus Nephritis, so I think he was just concerned.  I don't want to quite working, I really like it.  I am an office manager and it is tough sometimes dealing with the stress.  Has anybody tried to apply for disability, and did you succeed?  I would like to know before I attempt to file.

Thanks!
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426379_tn?1209874378
Hi,

Yes, I have been on SSD since 2002. But you have to  be out of work for at least 6 months before ou can apply. Then it is very common to be turned down the first time. The first time it is done through the mail. You are sent papers with a million questions - and they try to trip you up with the way they ask them !  Documentation from your doctors must be included. A few weeks later you will receive their decision. If you are turned down then you must get a lawyer, who will usually collect part of your retro pay  if you win as payment. Oh, and each time you must be examined by their doctor - which is a joke. So, the second time you must get all your records from your doctor and they must also submit other paper work. You then go before a judge along with your lawyer who will plead your case. The judge will ask what line of work you are in and what other types of work you are capable of. Then you wait another few weeks. If you win you will receive your first benefit with retroactive pay for the six months or more you have been out of work, several weeks or months down the road. And keep in mind, it will not be the same pay you were receiving when you were working. Bottom line, work until you can really not work any longer and save some money !


Chrisitne
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Avatar_f_tn
Hi there, if you disease advance, I'm just curious what the doctor does to stopped or to treat it What is that C3 and C4 stands for? Can the kidneys get better ? Did you heard about IMMUNOCAL? Do you have any symptoms of kidney damage? Thanks and I wish you well Also good luck with applying for SSD if you decide to.
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422425_tn?1307996590
Hello.  I started having kidney involvment about 3 years ago and I have some damage. The only symptom that I have is fatigue! and fluid retention. Kidneys damage is permanent, but they can stop the progression.  You can live with damage.  My doctors have put me on immunesuppressents and steriods.  I am now taking Plaquinel 400mg per day and 25mg of steriods.  C3 and C4 are complement levels.  No I have not tried Immunocal.  I do not put anything that I don't know about into my system.  You never know what might put you into a flare.  
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439464_tn?1213831234
Hi - I have been on SSDI since 1994 for lupus.  Yes, the process for SSDI is rigorous - but that is to weed out those who really don't qualify. I was rejected twice but accepted on the third try. Please note - I did all the paper work for SSDI myself - and NEVER got a lawyer - so I did not have to give up any earnings. In 2006, I helped a cousin apply and she was accepted on the first try. So try applying yourself for three tries before hiring an attorney.  Also, you must be committed to "not working" and listening to your physician's orders. Unless you have good disability insurance - you may not have any income for 6 months.  Get ALL copies of your medical records (and keep a copy for yourself). Get medical records from as far back as you can to document your case. It is very important to have your doctor's support to document your claim. If he/she can write a letter in your favor in might help your case. Good luck.
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422425_tn?1307996590
Thank you for your information.  I was let down when I heard about the 6 month "No Income".  I was hospitalized last year and still have some bills left over, so it will be a little bit before I can quit.  I am very lucky though, that I have a wonderful employer.  She is very flexible with me as far as taking a day off or two.  Thank God for that or I wouldn't be able to continue.  I am battling Autoimmune Pancreatitis right now, and beating it, but it stinks.  Again thank you for your information. God Bless.
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439464_tn?1213831234
Do you have any private short or long term disability insurance?  If not, perhaps you could look into getting one. Some employers offer a group rate for disability insurance with no limitations regarding pre-existing conditions.  Or if your employer is a large one, you may already have or qualify for short or long term disability insurance.  For a small fee, it certainly is worth it - it will cover you for the interim between the time you stop working and the time you qualify for  SSDI. And a good policy will continue coverage after you start collecting SSDI.  Also check with Social Security NOW and be sure you have paid into Social Security to qualify for benefits. They will also be able to tell you how much you would be eligible for when you do stop working. (*You do have to pay local and federal taxes out of the monthly SSDI benefits.) But look for a  short or long (preferable) term disability policy NOW and see if you are eligible. It will pay off in the long run. Note that some have an exclusion that you must work a certain period of time before you can actually collect on the policy - ie: some say you must work 2 years before you can go out on disability and collect. So don't delay! Good luck!
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422425_tn?1307996590
Wow, I am so glad you answered my post, what a great load of info.  I will check with my employer tomorrow.  I just started a new medication, a chemo drug actually....they told me if I needed to take some time off I could. They are really great to me.  Again thank you for all of the great information, I really appreciate it. Wish me luck!
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439464_tn?1213831234
I'm glad I could be of help. Like I said - I  have "been there", "done that".  I'm happy to help you any way I can. I have been on SSDI for 14 years.  I'd be glad to offer you any help along the way.
Dee Cee
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Avatar_f_tn
Thanks for your advise about Immunocal. I was told is the only herbal medicine which is in the medicine book and which suppose to help I think you're right Don't put anything your system if you don't know what is it.Hope you feel better and good luck with SSD
Gina
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422425_tn?1307996590
Hey...Are you on any meds right now? If you are I would talk to your pharmacy and just see if it would hurt you or cause a reaction with any of your medications.  My system is so touchy right now that I'm just a little scared to take anything other than what my DR gives me. I just started a new chemo drug, YEAH  NOT!  Some natural medications cause immune increase, which is not what you want if you have an auto disease.  I took Melatonin for just a short time, and it put me in a bad flare up.  Just because I'm scared though, you should do what is best for you. :-)
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Avatar_f_tn
I read your post and I have to tell you my sister in law has had Lupus for years and the first week she went on Immunocal she had results and as time goes by she is having tremendous benefits! She is so happy to have some relief. She cant beleive it because it has been a straight 6 weeks now with out the usual ups and downs (mostly down) for the first time in years. Immunocal works best on Autoimmune and certain cancers. My neice had stage 3 Hodgkins and 9 months later on Immunocal her blood work is coming back normal!  If you need info I can get it for you. Go to Immunocal.com click Drs only then hit 'Iagree' then type 'physicians' as the user name and 'immune' for the password. click 'health issues' and have a look around. It has 6 pharmaceutical patents for treatment of certain diseases and everyday there is more and more clinical studies. The stuff is absolutely amazing the longer I am on it  the better I feel and I keep hearing more and more amazing experiences. i know it would help you.
Email me if you want more info. ***@****
-Val
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354604_tn?1328555666
My friends have suggested I go on SSDI also... but how do I keep a roof over my head while waiting for their decision? It takes months!
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Avatar_f_tn
Even though I wasn't officially diagnosed with lupus, I was able to get SSDI the very first try with a fibro and CFS diagnosis (although my records did show symptoms of lupus). My problem was (and still is) the long-term disability coverage and how much I should have received prior to getting SSDI.  I still have an attorney battling them (The Hartford).
I have to admit, it was really difficult to be without an income and inexpensive health insurance through a company.  I'm only receiving about $900/mo disability and pay $500/mo in health insurance!  Obviously I am forced to pull money out of my retirement to live.  I'm hoping that my symptoms will subside with appropriate treatment thru my new rheumy so I can work at least part time.  Also remember that if you receive SSDI, you should be able to get on Medicare in about 2 years.  That should help!!  Best of luck and keep posting!
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439464_tn?1213831234
Hi. I know it's not easy to lose your income, work identity and health. I had to re-invent myself after working 17 years in the same job. I was fortunate to have a  Long Term Disability plan at work. There was a waiting period before that kicked in and I think I had to wait 9 months for SSDI. I am married and we were able to squeak by until my benefits came through.  But if anyone does not have a definite diagnosis - now is the time to look into Short and Long Term Disability insurance through your employer or even an outside insurance company.  SSDI benefits are retroactive - back to the date when you are first disabled.  Can a family member "loan" you money until  you start your benefits?   If you are single, can you take in a roommate to help cover the bills?  Good luck. And as NatureLover0214 writes, you will be eligible for Medicare coverage after getting SSDI.
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568603_tn?1240407635
I'm a 29 year old female and been diagnosed with Lupus Nephritis for almost 3 years now. Since i've been diagnosed with lupus i've done had so many flare ups, went through chemotherapy, was hospitalized with CMV, i've now been told that i have sleep apnea which do not go well with the fatigue from the lupus and then this. It's a whole bunch of mess and i can go on. I've applied for SSDI and was denied twice and the reason why they denied me was because they said my age and i can find some other type of work. But if they would of took the time out to read my medical records they would of know that i was in the army, I went to iraq and came back and was about to do my second tour over there. So i know that it's hard to get SSDI and i wish you all the luck, i hope that you will be able to receive it.
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422425_tn?1307996590
Thank you for your comment.  I have filed and they just sent me this HUGE questionaire full of redundent questions I have already answered.  My last day at my current job is the 29th of this month.  I just can't do it anymore.  My hands and arms hurt from using the computer all day.  I don't know if I will be approved right away, but if not I will get an attorney.  I have a long list of medical records.  Just getting another job is not the answer, especially with the fatigue issue,  My doctor says that I have sleep apnea too.  They are wanting my to do a sleep study.  I hope you are doing better.  I have been on chemo too, I am currently on Imuran for AIP.  I know it is hard, keep your chin up.
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Avatar_f_tn
Did you check to see if your employer has STD or LTD?  If so, they have attorneys who will help you get SSD.  Mine did.  Before you quit, check into it.  It may be too late since you've already turned in your notice, but if you say, you have reconsidered and love your job so much you would rather just try SSD first to see if you can get better in a couple of months.  If you don't then you will go on LTD after 3 months, then if you see it will never turn around you can get help to get SSD.  You see they don't want to keep paying you so they wll help you get it.  That way you will have approx. 60-80% income coming in for the meantime.  Good Luck,
Cindy
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Avatar_f_tn
Hi, why don't you just use the Medicare with your SSD?  It only runs about $100.00 a month.
Cindy
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Avatar_f_tn
i was diagnosed with lupus in 2004, and fibromyalgia and kidney proteinuria. I used my short  term disability and applied in 2005 for ssd. I was denied twice then was approved in 2007 for SSD as soon as my short term dis. ran out. don't give up keep trying you will eventually get approved even if you have to go before their adm. judge
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422425_tn?1307996590
Thanks for all the great ideas.  I don't have employer provided disability, but that is great idea.  I am now at home full time and waiting.  That is really all I can do right now. I am hoping to be in the few that get it the first time.  I have a lot of medical evidence, if they don't they are blind.  Again thanks to all of you that took the time to write.  It will help others as well who are fighting for this as well.
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626901_tn?1261876405
If you are on SSD then you should qualify for title 19 insurance through your local dept of human services office.  I pay $1/perscription and very small co-pay for eye care and dental.  I dont' pay a co-pay for my regular dr or my shrink.  I'd check into it if I were you.  Good Luck!!
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422425_tn?1307996590
I am very close to a decision...I spoke with my case adjudicator and all I have to do now is go for a mental health exam, after that they will make a decision.  She recieved over 1000 pages of medical history for me.  She said that was the most has seen in a long time. I am hoping to be in the minority and qualify the first time.  Thank you for all of your support.
Pam
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484160_tn?1343401521
Good luck, sweetie!  I wish the best for you.  Someting needs to be done to make disability more available to those with chronic conditions.  Injuries are much easier to prove.
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422425_tn?1307996590
Well I received a decision from SSI and I was declined, this is the first try.  My doctor was floored.  I have new tests and I'm going in for a CT scan on my pancreas and liver on Tuesday.  I will either appeal this decision myself or talk with an attorney.  I found one in Seattle that specializes sp? in autoimmune disability cases.  I just don't know if I want to give up 25 percent of my past payment.  That is a lot, but living without benefits from SSI is really hard right now.  My husband is having to work 2 jobs, and he is getting tired although he would never say anything.  Any input or advice would be great.  Does anyone know how long and appeal takes.  I heard up to a year...YIKES
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Avatar_f_tn
It can take years to be approved, I got denied, applied for reconsideration, denied and now I am waiting for the hearing. It's 50% approval at the hearing level, with attorney it's 60%. I got an lawyer, the average wait time for the hearing is 22 months, it has been 2 years, but finally I will have a hearing in Jan. I have Lupus, DD, OE, HBT, Fibromyalgia, Raynaud's Phenom. I am 45 years old. SO far the process has taken over 3 years. You are in Wa so your wait will be at least 2 years; probably longer. My lawyer has had some take 4 years. Make sure you apply for reconsideration right away, the longer you wait the longer it takes. You don't need a lawyer until you file for an appeal, so if you get denied the second time (most likely you will) get a lawyer right away. KEEP on top of your lawyer, mine did not look at my case file until recently and it turns out SSD didn't have the last 2 years of my medical files. Since my Docs are behind me I have a good chance of getting approved, it's important that your Drs are behind you. If you have a lot of education it is harder because they will list a thousand jobs you can do. It's a battle and financially ruins a lot of people, most end up on welfare before getting approved. I don't mean to sound down but that is the reality of jumping the hoops for the Gov. Good luck!
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422425_tn?1307996590
I finally got a fully favorable decision from SSD.  It only took a year.(ha)  I just want to say if you are in process of filing, and if you have an attorney, ask for an On the Record review.  It took 12-18 months off of my wait.  You have to be at the hearing level for this to be requested, and you must have compelling evidence to prove your case.  Even if you are decline with an OTR you can still go ahead with a hearing without losing your place in line.....DEFINATLY worth a try.
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422425_tn?1307996590
Finally got my benefit check....this has been a long time process.....I am glad it is over.  Lupus is not easy to claim, but I had a great attorney.....Don't give up if you are still trying.  Finally I can rest and recover from 2 years of hell.
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