Wegener's and disability

[Minneapolismark]

Is anyone interested in gathering and sharing information on obtaining disability status and benefits? I've done quite a bit of research and work in this area and have established long-term disability with my private insurance company, the IRS, several creditors.

I've found a person who was an accomplished disability lawyer, became disabled with Chrone's Disease and now advocates for disabled people pro bono (for free).

I'm still losing my house etc., but I lacked the physical ability to keep it up and running anyway.

So if you have Wegener's please don't assume you can't get disability.

[Jaha]

I'm very interested in gathering information concerning disability for the future. I am presently self employed but worked prior to self employment for 25 years in various companies. My self employment has been a blessing because I can set my own hours according to how I feel. I was finally dx'ed in Sept of this year and have been struggling with alot of pain and fatigue and sometimes end up sleeping most days away.I also, would be interested in your dealings with the IRS.Thank you in advance for any thing that you can share.
Jaha

[jtausan]

I would also be interesting in the information you have gathered about disability. I currently work full time but recently asked my boss if I could take a day off per week, to rest and go to Dr's appts etc. He granted me 1/2 a day off a week. Ugh, this was just a slap in the face to me. I work monday thru friday and by the weekend Im wiped out and have a hard time getting anything done and spending quality time with my family. I have had several people suggest I go on disability but am worried about making it financially. I have a lot of medical bills (as Im sure most of us do) and don't want to lose my house. Although I realize my health is the most important thing, its just hard to give that up being 39. Do you have to be on disability forever? Can you get off and go back to work? I guess I don't know much about it. Any info would be appreciated. Thanks Mark!
Jodi

[dotbill]

I would also be interested in your information as of now I work full-time and have been in remission for years after my second bout but I'll never forget the last battle I was literally only up fpr the 8 hours I worked.
Thanks so much for the info and hopefully I'll stay in remission and never need it.
God Bless
Diane

[Sangye]

jtausan, Many people are only on it temporarily. Here's info on returning to work while on disability. (They've overhauled the Social Security website, and it's much easier to get info than before.)

I applied for disability when I was first diagnosed and was serious shape. I could barely stand, my lungs were still hemorrhaging, I was still packed full of leg and lung clots, and I was on oxygen. The doc who did my exam just looked at my file and said there was no point in putting me through the tests because I was too weak to pass any of them. He okayed the application and then asked if we could just sit and talk about Wegs and what it was like to be dx'ed with something like that. I've since learned how much most people struggle to qualify. I hear most applications are routinely denied, even when the person really qualifies.

Some other facts:
- It's extremely difficult to get approved if you're already working. They see you as a person who can work, even if you're struggling to do it or you can't work as much as you want.

- Disability doesn't pay for your first 5 months of disability. It takes many months to get approved even if there are no obstacles. (Ex: I applied in June, with June 1 as the date of my disability. I got approved in December. They paid me November and December in one lump sum when I got approved. My case was as smooth as it gets and it took 5 months)

- The amount you get may be quite low. Self-employed really take a hit as they have a lower scale.

- You don't qualify for Medicare until you've been receiving disability benefits for 2 years. The clock starts on your approval date, not on your date of disability.

[stikker]

Wow. How do you pay all the medical bills for 2 years???