New to the forum

[Kalebsmimi]

Hi! Im Debra. I am new to the group. I was diagnosed with Wegener's in 2004. I have been in remission for some time now, but not without the symptoms that plague my body. I am 55yrs old, and the disease is really starting to take a toll on me, especially since I work. I am considering retiring and filing for my disability. I would appreciate any words of wisdom or tips on helping this process.

[windchime]

Hi Debra, I filed for SSD in February and was approved and got my first check in June. The best advice I can give is to collect all your medical records and organize them. You can fill out your app on line, but i would print one and take it with your medical records package to the local SS office. It helped me to expedite things. Make sure you fill out any paperwork they send you and return it in a timely fashion.

You will not get approved if you are still working. Your age is in your favor, I turned 62 in June. I'm wondering if you would be better off going out on medical disability (if you can financially) until you get SS approved, then retire. There maybe others on here than can speak to that.

[Kalebsmimi]

Thanks so much for the info. I am currently & have been for some time on FMLA at work..but I use it as I have days that I just cant work, rather than the entire 12 weeks at one time. I have a lot of days that I am out with one thing or another, and because I work with the public & a compromised immune system, it seems I am always sick. I am not sure how medical disability works, or how I would qualify for it. I am trying to find the best way financially to sustain myself until approved.

[mishb]

Hi Debra and welcome.

I'm sorry that I don't have any words of wisdom or advise on filing for disability in your Country, but there are many posts relating to it........all you have to do is put a word (say, disability or pension) in the search bar at the top.

I'm sorry that things are getting worse for you and I hope that you can work something out soon

[renidrag]

I had to go out on short term disability from my job back in 2010. That was the twelve week program with 66% of my earnings. After that I transitioned to Long Term disability. That went to 60% of earnings. The private insurance company then filed for SSDI on my behalf. It would save them a fortune. That is where I am now. I receive SSDI and my private disability payments each month. Not what I used to earn but getting by. The private insurance will end when I am 66. Sorry to say but I do not think you can receive SS or SSDI while you are working. They ask for proof that you can not work and will not be able to in the future.
Dale

[Mike_Milliorn]

Hi! Im Debra. I am new to the group. I was diagnosed with Wegener's in 2004. I have been in remission for some time now, but not without the symptoms that plague my body. I am 55yrs old, and the disease is really starting to take a toll on me, especially since I work. I am considering retiring and filing for my disability. I would appreciate any words of wisdom or tips on helping this process.

Since WG is incurable, you should file for SS disability benefits. I got a lump sum retroactive to my diagnosis and more monthly with less tax due. I'm 67 now but applied before retirement age. It was all done by phone without much red tape.


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[LisaT]

I'm in Canada where the system is similar but not the same, so I can't advise you on the logistics.

What I can tell you is that the paperwork is difficult and there seem to be buzzwords or specific phrases that they look for in order to approve you. There is an art to completing the applications, in other words. It might be worth looking into whether you can access a social worker or health care advocate who can help you to complete the application process and give you some advice. This may help you to get approved the first time around and not have to appeal or re-apply. If there's nobody to help, look at the legislation and ensure your doctor uses the wording that reflects the wording in the statute, to describe your disability (ie. in Canada, it must be both "severe" and "prolonged", and both terms are defined. So the doctor must include details that meet those definitions. I'm sure there is similar wording in other jurisdictions (I don't know where you are, sorry if it's on your post and I'm just not seeing it.).

I think you can only apply once you and your doc have determined that you're no longer able to work. For me, it came out of the blue... I'd been working through and with pain and fatigue part-time, for way longer than I should have, and during a particularly busy period, I had a late evening meeting and just literally could not get up the next morning... I abandoned a book and an editorial board halfway through the meetings on the update that was due to be published, and a colleague had to pick up where I left off and finish the process and the book. Once I was no longer working I really crashed and realized just how far past healthy I'd been pushing myself... If I could go back and do it again, I would have realized sooner and helped to wrap things up or get a plan in place rather than just not show up out of the blue. My last words to my editorial board members as they got in the elevator at 9:30 pm in response to one of them saying, "you sound sick again", were "I've been sick for two years"... (I had no voice among other things). I guess my point is just because you're still sometimes able to make it to work doesn't mean you have to keep pushing yourself until you collapse. If you're not well enough to work and try to get better on your days off, quit before you get worse... Then deal with the fallout and paperwork. Those are my two cents, for what they're worth. I hope it all sorts itself out and you're able to find a combination of work, health and family that helps you get to a better place. I know how hard to is to be unable to participate with family, especially the fleeting stages in children's lives...

[annekat]

Hi, Debra, welcome to the forum and I'm glad you found us. Getting disability can be tricky. For me it wasn't, as I was self-employed and not making enough for them to consider it viable work, and Wegs was making it harder and harder to produce an income. It is true that you can still have a small amount of employment and still collect SSD, and I think can be approved for it if you are making less than about $1000 a month. Of course, that is a pittance to live on, especially when you are sick, but sometimes people have to cut way back on their employment, if not stop altogether, in order to be approved. So it is good to try to have some other forms of income that are not considered work. I guess every local office is different, as mine just interviewed me over the phone after I'd submitted my application, and I never even had to talk to my docs about it The local office seemed to do everything they could to get me approved. I did get a fair amount of retroactive benefits, so that would be one way of reimbursing you for the months you didn't work while being approved. It's true as Cindy says that age makes a difference; like her, I will be 62 this year.

[Alysia]

welcome to the forum Debra.
I am still working but trying to get disability in order to pay less taxes.
please see that thread: http://www.wegeners-granulomatosis.c...isability.html
good luck !

[lag713]

Welcome Debra! I do not have any advice for filing for disability but I wanted to welcome you to the group. I'm glad you found us!