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Nan

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I'll try to make this short. Two years ago I got sick, one year ago I got diagnosed with dysautonomia and POTS (not by neurologist).  My neuro after two years has decided now is the time for testing and medication. Currently throwing around the idea that I might have Lupus.  So for the past 8 months or so I haven't gotten worst and I haven't gotten better. I am high functioning and really want to go back to work. Have even been looking around for jobs. My boyfriend and his mother (whom I no longer live with) still want me to go the disability track and take more years to "get better" and provide a "safety net". They are concerned that if I go back to work I will end up back in the hospital and with no possibility of money coming in. Well I just got a date for my hearing-in January. I am currently living with my Dad and taking a loan for living expenses. So obviously he really wants me to go back to work. AND to add to the mix my therapist thinks that if I go back to work I will get better.  

I am a little bit scared/concerned that me going back to work could blow up in my face. 

I am just wondering if anyone have similar experience.  Did it work out for you if you went back to work? Did anyone go through the disability track? How did that work for them? 

Thanks, 

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I ended up getting a job (by accident) shortly after my POTS diagnosis. If you are going to get a job make sure you it is one with lot of flexibility so that if you do get sicker you won't lose your job. You can also apply for disability at the same time depending on how much your job pays. 

Personally I think my job helps and hurts me. I only work about 20 hours a week but I am really tired when I get home. That being said it forces me to get up and go to work. And my boss is understanding and flexible. 

The decision is yours. Good luck. 

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I had to stop working 5 years ago and am permanently disabled from POTS. I had a hearing with a judge and he awarded me SSDI on the spot. I tried many years to work despite the POTS but I could not. If you are functioning enough that you could work they most likely will not give SSDI to you, if you can work in any other function than they will recommend what type of work you can do, i.e. if you are working in a job that requires a lot of standing or walking they might recommend a job as a secretary or anything that you can do while sitting. --- If you are able to and desiring to work then that is what you should do - depending on the job it very well could improve your symptoms. POTS waxes and wanes in most but I knw several people that were ill with POTS and now are working and living normal lives - although taking all the measures to avoid POTS symptoms. --- If working makes you worse then you can use that as a reason to apply for SSDI next time around. - You said you have a hearing coming up in January - is that for disability? Then I would try to work and see how it goes. If it does not work out you can use that in the hearing. Good luck!

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Hi Nan,  I was not on disability, but was able to come back to a normal job this past year. Before I was doing freelance work based around a computer so that I could work around my illness. Since coming back to a real 40 hour work week, I did have to find a job that allowed me to do what I'm capable of which means working on a computer; I would have no ability to do physical work or anything where I would have to carry stuff, get up and down a lot, or walk much. I also used a powered wheelchair when I go into the office because it is in a big building. So for me it was finding if I was capable of actually doing the job sustainable (doing as much research as I could before I took the job) and then just seeing how it went.

The worst case scenario would be that I could try it, and make any adjustments necessary to do it successfully, and if it didn't work I would just have to find a new one where I could work on a weekly basis sustainably.

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Many people with diagnosed dysautonomia get disability, but many others don'''t so I wouldn't rely on it.  Do you have a lawyer involved and has that person told you what your chances look like?  If you don't have a diagnosis and don't have testing I might be more challenging to get disability.  I also think that if you feel physically able to work, you should. Doctors usually say that being active helps you improve.  

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Nan, I would try for the disability first. If you end up getting the disability, you can do a work trial period where they won't take away your SSDI for 6 months or something like that. Also, if you do continue to work after your work trial period is over, and then eventually become too disabled to work again, you can restart your SSDI without going through the entire process from square one. You just start benefits back up straight away. I would try this method first. Sometimes I have days where I am barely hanging on, and last week I worked like there wasn't a single thing wrong with me (but only because I doubled up on pain medication). I only work 12 hours a week, just enough to pay my bills and buy food, moms gives me a free room to live in. I just pay for my food, clothes, medicine, and other stuff. I don't take a dime from her other than the free room and some electricity. That is what I would do since your hearing is so close. Don't blot it ad have to start all over again and wait even longer. 

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