Social Security Disability

[amann8506]

Is there anyone that is not on dialysis that has been approved to receive Full or Part Time Social Security Benefits for Wegener's Disease?

[KimH]

I was denied. The letter said sorry that you have wegeners but you will be better in less than a year. HA ! I might try to reapply. I understand it takes persistence! My daughter who has lupus ended up hiring an attorney. By coincidence she was finally approved the day she was to begin dialysis. Good luck!

[annekat]

I had no problem getting it, even though I don't have a severe case compared to some others. But I think I was lucky and that was unusual. My age, 58 at the time, may have been a factor, plus the fact I was making very little money at my self-employed business, which made it look like I was having trouble working, which I was. It may be also influenced by where you live and who happens to be working on your case and making the decision. I remember hearing, around the time I was approved in 2011, or not long after, that vasculitis has gained some new level of recognition as a disease worthy of granting the benefits for. It is all very complicated, but I'd encourage you to go ahead and reapply. Yes, you might have to hire an attorney, though I did not.

[renidrag]

I also had no problem getting SSDI however, my private issuance company hired out to get the approval. Was reinvestigated this past year and private insurance company re-upped me. Age 60 at the time.
Dale

[windchime]

I was denied said I was still working which the application clearly stated I was not. Hired an atty. Waiting now. The atty gets 25% of any back pay I get so there is no money out of pocket. If they can't get me approved there is no fee. It's worth it especially when dealing with the ups and downs of this disease. I didn't want to hire an atty, but just don't have the energy to fight it at this time. I'll keep you posted.

[John]

I am 65, and a teacher. I cannot get disability from Social Security because of my age and haven't paid into it for 10 years. I am presently applying for disability from teaching. I have been off work this whole school yr. as I was diagnosed with WG at the beginning of the school year. Lucky I had 80 sick days accrued was given 30 days emergency leave. I don't know how the disability works with teachers, surly hope they approve it. Hate all the paperwork. My wife can retire in 3 yr. but because we have my insurance through her work she will not be able to, as I will no longer have insurance with her company, and I cannot afford insurance without her.

[Dirty Don]

What about Medicare and supplements...that reduced our costs immensely.

[LillysMom]

Lilly had to get a attorney. At first she applied herself, but an individual, at least us, did not have an idea of what to emphasize, how to say things, etc.
At the time she had just had a knee transplant, and the response said that as soon as she healed from that, she would be able to get a job. It is very hard to explain the health probs of WG, even for the lawyer, but he listened to her and understood to a degree. We are now finding out that what she said, that she could not work full time and then nothing but sitting, was as true as we thought. Her 1/2 time job 4 days a week has been OK, if she paces herself. The attorney was the key. There canbe no better deal than him taking his fee out of first payment(s), and nothing if she did not get disability. It has been a life-saver for her. Please, anyone reading this, don't minimize your disease and rationalize that you don't need help. Unless you can work full time and in a job that requires consistent energy, a sharp mind not fogged by any pain killers, and an uncertain physical health future, don't hesitate to get disability. And let someone help you who knows the ropes. Sorry for going on, but I feel real strongly about this. So many people think they can just fill out paperwork and get it. Not likely.

"If nothing ever changed, there'd be no butterflies."

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[windchime]

John SSD turns into regular SS at age 65. You should now be eligible for Medicare and shouldn't hesitate to apply. Also even though you hadn't paid into SS for 10 years if you had so many quarters (I think 10 or 12) at any time during your life that should have been enough. Now at 65 your SS is about the same as SSD is if you didn't take it at 62.

Lilly's Mom I agree totally with the attorney. They can also push things through faster. Mine filed the appeal and went directly to requesting a hearing with an administrative Law Judge leaving the SSA out of it. Hopefully it will get pushed through quickly. I'm lucky that I'm currently on short term disability and that will change to long term disability in April. Still only 50% of my pay. *sigh* If SSD goes through my employer will not let me collect both unlike other employers. They will make up the difference between the two if the LTD is more than the SSD.

[Debbie C]

I had no problem getting mine but I used to work for S.S. and workman comp lawyers so I knew a little about it. But you need to refile within 30 days.

[renidrag]

Quick update. I was reading another thread titled Lung Involvement and couldn't help but notice the price of some of the meds make them unattainable. I am on SSDI and Humana for the Drug plan, this has worked out well for a year though my Symbicort costs me over $300.00 every three months, along with my other meds which are reasonable. In February I received a letter from Medicare stating I was eligible for "extra help" with my prescriptions, next day I got a letter from Humana stating the same thing and all I had to do was call them. I was thinking some of you could call local SS office and ask about this. I did not look for this it just came to me. So now all my generic prescriptions are $1.20 and ALL name brands (Symbicort) are $3.60. What a country, hope this helps some folks.
Dale

[Debbie C]

Hi Dale, I was on extra help for a couple of years but since they increased the amount you get for SS, I now make too much money ( that's a joke ) so I was denied it. I have bcbs as my insurance and have to meet $150.00 dedutible before the drugs are cheaper. But I agree everyone should try to apply for it, it really does help with scripts.

[windchime]

Quick update. I was reading another thread titled Lung Involvement and couldn't help but notice the price of some of the meds make them unattainable. I am on SSDI and Humana for the Drug plan, this has worked out well for a year though my Symbicort costs me over $300.00 every three months, along with my other meds which are reasonable. In February I received a letter from Medicare stating I was eligible for "extra help" with my prescriptions, next day I got a letter from Humana stating the same thing and all I had to do was call them. I was thinking some of you could call local SS office and ask about this. I did not look for this it just came to me. So now all my generic prescriptions are $1.20 and ALL name brands (Symbicort) are $3.60. What a country, hope this helps some folks.
Dale

I applied for this for my Mom last year after my Dad passed and thankfully she was approved. It has helped her tremendously. Depending on income, people may qualify for help with their medicare part ?, the one that gets taken directly out of your SS check. Can never remember which it is. Anyway the $105 or whatever it is paid for by the state for my mom. So that was another little help that we appreciated. If you go to your state web site you can usually sign up online. Of course that depends on the state, but it's somewhere to start. You may find other help on the state websites too. Worth a look.

[VictoriaBrady]

I too live in Ohio and having trouble getting SSI disability. Lots of paperwork..going to hearing next. Atty hasn't done anything yet except send me forms to fill out. Can you offer any help as to what to say. I live in my "bubble" and don't like to see myself sick.

[windchime]

I too live in Ohio and having trouble getting SSI disability. Lots of paperwork..going to hearing next. Atty hasn't done anything yet except send me forms to fill out. Can you offer any help as to what to say. I live in my "bubble" and don't like to see myself sick.

I was approved without an appeal or hearing. I would say just answer the questions honestly but base them off your worst day. You say you don't like seeing yourself sick, but I would not appear at the hearing all chipper. Quiet and introspect would be good. How old are you if you don't mind my asking? Ohio seems to be a difficult state to get approved in. I'm on some FB groups and Ohio people have it rough with approvals. Good'luck at your hearing.

[annekat]

I'm 62, about the same as Cindy, I think, and I also got approved easily without a hearing. I think age is definitely a factor. Good luck, and yes, focus on how your symptoms really affect you, including the extreme fatigue, and you might even have to educate them about the seriousness of the disease and the difficulty of getting into remission, and that even then, you are not out of the woods. Follow Cindy's advice, be honest, and don't act like you are bending over backwards to convince them, but just inform them of the realities in a calm, low-key sort of way.

[VictoriaBrady]

I am 48. This has been going on for about 10 years. I worked until Feb last year. General Manager, I worked a lot of hours but with a lot of leeway, shut light out when migraine/headache. Keep ice on face when in pain or tissue in nose when bloody drainage. Got sick often and had nothing left for family and friends. Now that I don't work I have more energy to take care of myself and spend awake time with family. (Still don't do with friends like I use too). SSDI lists Wegs as one of the approved impairments but denial states since I can walk sit or stand I can do other work. Why do I have to prove my disability if it's listed already. I didn't even know wegs was a SSDI approved disability till I saw their website. Feel like I'm asking for a handout not something I've paid into since I was 18. I don't really know how this forum works but I'm glad I found you guys. Wegs is hard to explain and since the tumor was removed from my face, "I don't look sick". I have learned so much from reading on this site. I'm not alone with the fatigue and lack of concentration/memory. I have been on predison/metha combo for about five years now (50 pounds heavier) before that it was cellcept/pred and have been doing Rituxan infusions last couple years. If the wegs doesn't get you the side effects/warnings of all the meds do.

[annekat]

My sympathies are with you. I have heard that having an illness on the list of impairments does not guarantee approval. But sheesh, I can walk, sit, and stand and do some work, and they approved me! It is good that you are not currently working, as that would be a disqualifier. However, they do allow a person to do some work and earn up to around $1000/mo. and still collect the benefits. So, their definition of "work" is earning any amount over that, from work. You can still have other income such as rentals, investments, family contributions, etc.
Anyway, it seems to me that if they are going to allow someone to work in a limited way, that obviously those people can usually walk, sit, and stand, so those criteria are way too strict and unreasonable. They should allow that a person has lost the capacity to work full time but still can do a little work and function in their daily lives. You are only 10 years younger than I was when I got approved. So it seems there could be a chance, if your lawyer and you present the case well and are lucky. So all I can say is good luck!

[Jaha]

I'm sorry that you are having such trouble getting approved. The lawyers should be helping you fill those papers out. The trouble with lawyers are that they want it to drag on so that they can make more money on the back pay. They added Wegener's around 2010 and then in 2012 added some more dx's. Do you have any other illnesses to add to the list, like anxiety or fibromyalgia? The questions are very repetitive and I filled it out on my own it was very exhausting. I used that word a lot on the questionnaire it was true. Wishing all the best at your hearing. Oh, one more thing, make sure you state that you will be on chemo for the rest of your life.

[annekat]

Another thing was just pointed out in another thread, the one about "when to stop working". It should be recognized by anyone who deals with a WG patient that too much working, too much stress, can easily delay the process of recovering from the disease, and can cause relapses. The lawyer and the judges at the hearing should all be aware of this fact.

Since some WG cases are more severe than others, this can vary with individuals, and I'm sure there are some Weggies who cannot work at a job AT ALL, EVER. Yet they still can probably walk, sit, and stand......

[annekat]

Here's an idea: Look over this thread that I have been following: http://www.wegeners-granulomatosis.com/forum/general-wg-chat/4276-when-time-stop-working.html#post89471 , and print up some of the pages that discuss working while having WG, and when to stop. There are examples of people whose work performance suffered, whose remission was delayed, whose recovery was quicker after they stopped working, and whose doctor suggested they stop working. These might be very helpful at your hearing, if you will share them with your lawyer and hopefully get the hearing judge to read them, too. Good luck!

[cjhnsn29]

I have just starting to receive SS disability. Had to get a lawyer and won the case. First they said no mostly due to my age.

[cjhnsn29]

I can tell you how I got SSD and Medicare And B it's worth it. I am 43 and finally made it. Took a while and they also had to pay 3 yrs back pay.

[Alias]

I worked in the insurance industry for many years and had peripheral exposure to SSD cases. From what I saw, the benefits determination process is very arbitrary. Some people with relatively mild impairments get approved on the first shot, while others who seem obviously permanently disabled are denied and have to go through the appeals process.

[annekat]

That is what I suspected, Tom. I consider myself lucky to have gotten it on the first shot and wish it was that easy for everyone who needs it. My age, 59 at the time, must have had a lot to do with it.

[carrottop50]

I am already on disability for Rheumatoid Arthritis (RA). But I do have a friend that has Wegener's and he is on disability. I know it takes time... I was talking to others when I was applying for it and they all told me to keep after it... because you are likely to be turned down twice and then go before the Judge and that is when most get approved. That is what did happen to me.

[Victoriaitsnosecret]

I'm about to have a hearing in November. I've been out of work over a year. I used my savings. I left my job due to fatigue. It was severe I couldn't do anything. I have joint, muscle pain daily, my sinuses and ears are always blocked. Some days I feel like total crap and just want to sleep. Other days I feel ok. I'm hoping I get approved I'm scared of having to try and hold a full time job.


😃 victoria

[annekat]

Having quit your job due to fatigue and using up your savings should be in your favor. Good luck, and if you win, I hope you'll get a good chunk of retroactive benefits to replenish your savings.

[cjhnsn29]

I had to get a lawyer, I was denied and appealed and they still said NO! There loss I had to get a lawyer and was approved. They had to pay me 3yrs of back pay. My lawyer stated 90% of people who applies are denied till a lawyer gets involved. I just wanted to start getting paid to pay the bills and do to SS denying me they had to cut a big fat check. I was so happy. Also I didn't have to wait the 18 months for medicare ins. That was also started back when I was approved that they had to pay for the procedures that was already paid.

[Victoriaitsnosecret]

Thank you for the replies. I hope I win, I could certainly use a chunk of money.


😃 victoria

[renidrag]

Good luck Victoria. How is treatment going? I forget who you are seeing.
Dale

[Jaha]

Best wishes to you on your hearing. Do you have a statement from your doc stating that you are unable to work while you are on tx? Asking because, I had one from my doc and I think it helped to get the approval. Best of luck to you.

[Victoriaitsnosecret]

I'm seeing a rheumotlogist. A pulmonologist. ENT and my PCP. I would love it of they were more connected. I'll often pass comments to and from. My rheumotlogist wouldn't fill out the form for SS. That might be bad for my case. I'm trying to get in touch with him to find out why. It's frustrating.


😃 victoria

[Victoriaitsnosecret]

As for treatment I was off methotrexate for a month or so. My nose started to go crazy again so I'm repeating CT-scans of lungs and sinuses to see if I need to start treatment again. For me the fatigue never went away and I've always had aches and pains enough so that I feel crappy most everyday. Now my right ear is blocked. The ENT said it might just be from sinus pressure. Whatever, it feels like I'm in a fog and I hate it. Wah, wah, wah! 😃How's are you feeling Dale?


😃 victoria

[Velma]

I was diagnosed in 1994 and applied but was denied.. when I flared again in 1996 I was denied again.. I got a lawyer (who did not get paid unless I won the case.) We won the case and I was given my disability. As time went on and I went into remission I was able to go to college, graduate, get my masters degree, and work as a teacher for 7 years before the latest issues began. I contacted Soc. Security and things were re-started immediately as I was already diagnosed and was able to keep my medical insurance the entire time. Advice.. re-apply and get a lawyer. They make it sound that if you can wipe your butt or blow your nose you are not disabled. The fact of the matter is that no matter what you will always have dr apts and always be on meds. There is "no cure" and the lawyer can use that to get your benefits. Keep all documents from Soc Sec. too. That will help you in the fight.. even denial letters because they can go back and pay you from the first application even if it was years prior to the next application. Good luck.