Hello everyone? I have a question about disability and all.. I hope to never ever find out first hand, but I do worry about it, and it stresses me out big time!! My company has disability, but i don't have any other private disability. How does it work usually (I know they will all be differenet) you get your disability payments, but does that usually include insurance too, or do you have to do cobra? If you do have to do cobra, can you get insurance through goverment disability? I assume you don't get gov disability, if you have it through your work too?

I'm just a planner, and of course with all of this mess, much is out of my control.. so I'd like to have a game plan in my mind, should things go south! Thank you!

Here is how it worked for me.

I have a Long Term Disability policy from my employer. When I went off work, I was first put on Short Term Disability and then Long Term Disability receiving 2/3 of my salary tax free, which is essentially full pay. I went on Cobra, which I had to pay. My LTD company had me file for Social Security Disibility, which was granted. The LTD payments were offset with the SSDI, so I still recieve 2/3 pay but some comes from LTD and the rest SSDI.

After two years on SSDI (which went retro to the time I went off work), I started to receive Medicare.

Fed Cobra lasted 18 months, but when I was granted SSDI, Fed Cobra was extended to 29 months. After that, California Cobra picked up so that Cobra lasted 3 years. If I was to do it again, I wouldn't use Cobra, I would get a plan through the Affordable Care Act. It is less expensive, with better coverage.

Kim explained it very well. That is exactly how it worked for me. The only scary part was that my 18 months of COBRA almost expired before I was finally approved for SS disability. TN doesn't have a State COBRA program, so I would have been without any insurance, which would have been a disaster. Once my SS disability was approved, then my COBRA extended for the additional 11 months and then I switched to Medicare with a supplemental policy. I guess the lesson is that you should get a lot of help with your SS disability application and pray you get approved quickly.

Hopefully, you will not have to go through the process and your mg will go into remission.

Juanita

WOW.. thank you all SOOOO much!!!!! I can't tell you how much yall helped lower my stress levels!! I'm so sorry yall had to go through this personally!

I am way better than I was 2 years ago, when I had to take time off from work (nearly 2 full months and many more months on reduced hours), as we had no idea what was going on with me.. but sometimes I feel I could be getting worse too.. like i'm always walking this fine line between pulling it off- work, kids, etc... the stress of the consequences having to leave my job is always looming over my head every "bad" day I have... Thank you all for explaining to me how y'alls experiences went - hope all is going ok for yall!

Does anyone know if/how to get partial disability? Last week was the first time I tried to go back to working 5 days a week since January. I made it through last week but did not make it through this week. Can I go on partial disability? I am running out of sick and vacation days.

thanks,
kathie

Kathie have you tried FMLA yet? It gives you 12 weeks a year to use as needed, I use it as needed for bad days and IVIG sessions. Where I work they do pay fully while on FMLA, not all employers do this but many do. All employers are required to provide the 12 weeks FMLA time per year without you having to fear losing your job

Joe

Thanks Joe, but our FMLA is unpaid. The exhaustion is really getting to me. Some nights I sleep 16 hours, some nights although I am extremely exhausted, I am up half the night.

By the way, the gastro and new neurologist think my gastric issues are an autonomic neuropathy of another autoimmune disease and not Crohns.


thanks,
kathie

I'm with ya on the unpaid FMLA : ( Maternity leave wasn't good, and kind of looked down if you take the full three months..

Cait - I have GI issues too.. my sibling has crohns.. but my tests have been negative.. so they also think my small fiber neuropathy has included my autonomic nervous system - heart, GI and eyes.. fun

Kathie sorry about the unpaid FMLA. Im not sure how I would have made it this far without this benefit. Im glad its not Crohns Kathie, Its not fun at all and the last thing you need with MG. For me I was Dxd with Crohns and colitis about 4 years before MG.

My neuro also suspects autonomic dysfunction as after my IVIG treatments I find I tolerate temperatures much better. Normally even 75 degrees is too warm. After IVIG I find I enjoy 80 degrees just fine.

Take care

Joe

Anything over 72 degrees is too hot for me. This weekend, even the air conditioner could not keep me cool enough.

Well, it is not Crohns, but it causes the same symptoms. As far as I can see from my internet searches, the only way to treat it is more immunosuppressants. The polyneuropathy is likely caused by another autoimmune disorder, but they don't know which one yet.

If anyone went on partial disability or if it is even possible, let me know.

thanks
kathie