Addison's Disease Support Group

Addison's disease (also known as chronic adrenal insufficiency, or hypocortisolism) is a rare endocrine disorder. It is estimated that it affects about 1 to 2 in 100,000 people. It occurs when the adrenal glands, seated above the kidneys, fail to produce enough of the hormone cortisol and, sometimes, the hormone aldosterone

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Anyone on Social Security Disability for AD?

When I was first diagnosed with Addison's I was quite ill but after starting the steroids I felt like my old self again. I had retired just prior to the diagnosis because work was just getting very difficult and I was always totally stressed and fatigued. After retiring I felt a bit better but not my old self until the Addison's meds. started. After a while I started feeling all the Addison's symptoms slowly return; my meds have been adjusted but I am definitely not my old self and probably never will be again. The thought of being able to work again just seems impossible.
I have read that some people with Addison's are able to go on Social Security disability. Have any of you gone through the process to become eligible for SSD? If so, how long did it take and how severe is your disability?
Thanks for any responses about this topic!

Replies

deleted_user
deleted_user

I was diagnosed with Addison's Disease and Hypoglycemia in 1972. Being stubborn as well as stupid, I refused to believe the doctor who said I will not be able to work. So I took my medsm prayed, asked others mto pray and then one day decided to go back to work PT as a podiatrist's assistant. My former job was with the same doctor but full time. I went to work, dragged the last few hours, made it home but the grace of God and my stubborness and went to bed and collapsed. telling myslef, it will get better. takes a while to get se to working again. WRONG!!! I wound up in the hospital several times before I would admit I could not work. But I did do crafts whenever could and sold them.
Now I still get tired and in addition have MG which mkes my muscles and nerves not talking to each other. After i rest, I can do some again.
It did not take me long to get on SSD. I was reviewed many times to evaluate my condition and stayed on. Now I am on regular SS.My advise.................Go for it! Get a SS lawyer to help you. They usually get paid out of your past earnings so there should be no money out of your pocket and usually if they do not get your ss, they do not get paid.So they do work hard for you as themselves as well. Good Luck.
22Lynn
22Lynn

I am on SSD. I passed on the first look, but I have 8 illness', including the Addison's. So it was easy for me. I understand it usually takes 2-3 tries to get your disability Passed. Good luck.
webber
webber

Thank you both for your answers to SSD! I am still working on getting it, I have a lawyer and have only one more step before they make a decision. My lawyer told me it may take a while and a few tries before I am approved but that my case is very strong. Whatever happen at least I feel good about being proactive about my condition and since I am already 60 yrs. old I am also very close to regular SS.
My very best wishes of good health to you all!
deleted_user
deleted_user

I wish I had sought SS earlier. Instead I took money from my retirement and may end up eating only beans and rice ( neither of which I eat) in my twilight years.
webber
webber

If you are under 62 yrs of age you can still apply for SSD! If you qualify the payments are retroactive to your date of disability.
webber
webber

I was quite happy and also surprised yesterday when the Social Security Office called to let me know I was found eligible for Social Security Disability. I thought it would take months to find out and then I would be denied. She told me that Addison's disease is one of the diseases that get priority due to the severely of the disease. She said the paperwork was done well by me and my lawyer and there was no reason to deny my claim. This is truly a blessing for me because being able to work more than an hour at a time for me is not an option.

Wishes of good health to all of you!
deleted_user
deleted_user

I had been trying to work full time with Addison's and Myasthenia. Determined to work and lead a normal life, I drug myself out of bed, showered and dressed each morning and went to work, only to come home so exhausted, it took all I had to eat a sandwich before falling asleep on the couch. That was all I seemed to be able to do. House was always a mess, never seemed to have time to do anything. Weekends were spent entirely on resting, cleaning upend paying bills. I could feel myself gradually getting weaker the last two months. After several checkups, I was being told it was depression. All blood work ran was normal. Working became impossible with the mood swings, fatigue, always in a state of confusion. About a week after quitting my job, a friend brought me to ER because I was so weak, I could barely hold my head up. That was 3 weeks ago. I was diagnosed as being in Crisis for both illnesses. I'm walking around on my own again after struggling with all the med changes and side effects. I'm currently on 80 mg per day prednisone, .01 florinef, a weekly injection of methotrexate (also have RA) and 18 other pres. meds. I filed for disability yesterday and was told it would take several months maybe a year. Really hoping it won't be long!
22Lynn
22Lynn

Two of us who have posted here got our disability first try because Addisons is such a serious stressing disease. Like you I am on 24 meds a day. Medicare takes Addisons very seriously. I don't think you will have a problem getting through the first time. You just have to wait for the system to work. Good look.
deleted_user
deleted_user

I like to help people asking about disability...since it is so confusing.
First of all...if you can work keep working you will like yourself better for supporting yourself.
You will need all your doctors to agree that you qualify for it. Even if one feels you do not it can really slow the process. I say this...if even most do feel you should...go on your state disability for a year. See how you feel. your job should still be there if large enough company and this way you can really see pros and cons of not working.
If you decide you want to try and go for it and all your doctors agree than hire a person that SSI will give you list of people in your area. I hired a guy who use to work for SSI and got tired of all the people being turned away. So you do not need to hire lawyer. Do not hire the online non profit people...they do not know what they are doing...they told me many wrong answers including that i would never get it!! lol! Do not hire the tv ads people...they have been known for not sending a lawyer when you get court date so they leave you high and dry.
It depends on your doctors, how old you are and just pure luck how soon you get it. The person you hire should be able to tell you right off about how long it should take. They try to find cases of people with your disease in similar way you have it that won....that sets precedence and SSI cannot fight that.
Once i hired the guy....i got it within 3 months. If you try yourself...just not worth the stress but go ahead and try if you like.
You will most likely get turned down automatically first time. I been told that SSI workers are told to automatically turn down every case because many people just give up at that point or are too tired to fight it. WHy hiring someone is worth the stress....oh the money is percentage of your settlement...5% i believe is highest they can take from it ..well worth it.
if you do get this far....email me be more than happy to give you more info but if you hire someone they should be able to answer all your questions as well.
It also depends greatly on how old you are...closer to retirement easier it gets...so younger you are...or more you will cost harder it is but many do...as long as your doctors are behind you is the largest thing you will need and a good person who knows how SSI works and want they look for...so hire someone who has worked for them if you can.
GOOD luck ...there is no money out of your pocket...if they charge you....that is illegal.according to SSI rules.
You might just call SSI and speak to representative there are other things besides ssi that you can get to help you ...such as survivor benefits if your husband or wife died...if you are in lower income they can help...just make sure this does not stop you from getting SSI since you will need health insurance.
ONE Big thing...you may not get your prescriptions covered on SSI and not all doctors take SSI patients...that can be huge issue if you have doctor you like and they refuse SSI people.
so try and get the year off and really look into how you feel not working, can you support yourself on that lower income ....do you need really great health insurance or just so so...what about doctors will all of them take you still?
.
might be other questions i am not presenting...or can you retrain in another field where you could work...
one thing is you can always go back to work if you want too.
good luck and if you do go out....and like more info...just message me and will try to help...
Just do not fraud them...people have ended up in prison for that ..and they do send investigators around....i wish they send one to guy on my street....poor wife works hard. He is out on ankle...yet he does more outside stuff than i can or my husband with arthritis in both his ankles...makes you wonder. good luck
webber
webber

Siskyka, you gave great advice; thank you for sharing your experience. I was very lucky to get SSDI on the first try. I did hire a SSD lawyer who did much of the work and saved me a lot of stress. If you are eligible for SSDI your lawyer gets 20% of back pay up to $6,000 no more. The back pay was something I didn't have before so it was all a gift to me.

It took 4 months from start to finish; I think my time was quick because I was 59 yrs. old when I applied and 60 when I was excepted. I had spoken with all my doctors and they were all on board with me getting SSDI. I was found eligible and none of the doctors were even contacted. The SS worker who called me to tell me I qualified also told me that Addison's is one of the priority diseases that are quickly looked at because of the affects on the person's abilitly to work in many cases. I also will be eligible for Medicare in April of next year. If you get SSDI you are eligible for Medicare 2 years from the date they consider you were eligible. I also received back pay from April of 2011 to date, which was a nice help!

I suggest as Siskiya said; work if you can without getting sicker, work can be so rewarding in your life, but if you are getting sicker from work consider trying for SSDI.
deleted_user
deleted_user

Just my two cents worth here.. I too got my SSDI in a VERY short time.. I used a attorney who worked on getting people SSDI and nothing else... this work WAS this man's bread and butter..I was in my early 40's. This Attorney like Webber said only got 20%.. of my back pay..from the date of determination of disability. I got the rest,,so.. he did all the paper work..I never got turned down not even once, I went to two doctors appointments...I didn't even have to show up for the hearing..the attorney contacted me a total of 4 times after the initial paperwork and believe me he earned his money.. lots of paperwork.. redundant paper work..Getting my SSDI was NOT hard at all...some folks do have a hard time I suppose.. but not all Attorneys are the same. I had a very compassionate, caring gentleman who even came to my house to deliver me my check..and the paper work. If you need it go for it.. just screen several Attorney's first to know your getting good work for your 20% !!! ~Maggie~ :-)
deleted_user
deleted_user

Hi webber
I am on SSD, and have been since 2010. I started that long journey four years before that, in 2006. I was denied twice and then I went to court to see a judge to let them decide if I was disabled or not, which after seeing my lawyers papers (my records) and talking to there doctor they deemed me disabled.
I not only have addison's but other problems with my back as well, however, Addison's was the determining factor. I was denied because Addison's is not that popular disease, as we all know.
Good luck

Becca
deleted_user
deleted_user

I was diangnosed with Addison's 11 years ago at 45. I had just started back to college and was able to get my teaching degree. I have since been certified in Special Education and I am working full time for the past six years. Summers off of course which is good for me. My children are grown which helps. I cannot do everything like I used to. I can do one or two big things in a day (work and go grocery shopping) and then I am done. But I can do them and enjoy my life. I get lots of sleep. Take my meds and up my meds if I am stressed. I have not had a crisis since I was first diagnosed. Daily management is the key.
deleted_user
deleted_user

I just appealed a denial of my SSDI. I was in the hospital twice in Feb 2012 and they didn't really know what was wrong with me except I had respiratory failure, kidney failure, low blood pressure, fainting, low potassium, and pneumonia. I was readmitted again in Feb 2012 with similiar issues. I was denied disabilty and so I found out I had addisons in September and I am appealing with the added Addisons as I my doctor (a new one) doesn't feel I was ever properly diagnosed with the addisions and was probably in a crisis. I hope and pray that this will be considered since it was diagnosed after the issue. I had to retire due to inability to work due to fatigue and just overall feeling horrible. I will keep you all updated and hope I get good news! I do not have a lawyer but will have one if this is rejected. Not sure how many times I can be rejected and appeal. Wish me luck!
deleted_user
deleted_user

Hi. So glad to hear you got your disability claim approved.

I had to quit work in April of 2006, my health got so bad that I couldn't get out of bed most of the time. I have had Addison's for 20 years (since I was 14), plus Type 1 Diabetes, hypothyroid, neuropathy, etc. I worked ever since I was 15 and did the best I could but it eventually became too much.

It took 3 years, two denials and a SSD lawyer to finally get approved for SSD. The good thing was, that once we went in front of the judge he made the approval decision immediately, rather than the 3-6 months an administrative decision usually takes.

The back pay was nice though it didn't last long due to the length of time between stopping work and starting disability. SSI rules (in TN anyway) only allow the lawyer to charge a fee if there is back pay awarded and it is capped at $5300 or 25% of back pay, whichever is smaller.

I would encourage anyone to get a lawyer or advocate working for you right away as it saved me alot of hassle, but in my research I found that most will not take the case until after the initial Social Security denial is issued in writing, so you may have to do all the initial filing and paperwork yourself. Maybe that was just my experience though.

So, I haven't worked at all since 2006 and I wish I could do something but I know that would be a disaster.