So I just recently stopped working because my lung functions have been declining through the years. After 1 week in the hospital and 3 weeks on IV antibiotics my FEV1 % predicted only went up 2 %. This has never happened to me before. Usually after IV's I go up at least 15%. It scared the crap put of me. At my post hospital stay clinic visit I discussed stopping work and going on disability with my Dr and she agreed that it needed to be done. When having a full time job I was not able to take care of myself the way I need to and get all my treatments in.
When I decided to stop working I just knew I had a plan to receive disability benefits through my employer and apply for SSDI. I thaught I would start getting paid after the 2 week waiting period from my disability benefits from work and even though it would be tight I would be getting something and could do side cash jobs. Now here I am receiving nothing at all. Every time I have went out on disability from work I had no problem getting started but this time they are waiting on medical records and the case is still pending.
In the meantime I am also applying for SSDI. I know and have heard all the horror stories of the wait and thaught I was prepared. Before I started this "great journey" I did my research and know that I qualify because of my FEV1 % and because I culture pseudomonas aeruginosa (a bacteria that settles in the mucus in the lungs and causes respiratory infections). There is a 5 month waiting period to start recieving benefits but it can take even longer to finally get approved. I am working with Beth Sufian on my case. Beth is an attn that manages the CF hotline and represents CF patients with insurance matters, disability claims, social security claims, and matters related to access of health care while also dealing with CF herself. Also its sponsored by the CF foundation.
Although times are hard financially I know that I made the right decision. I have been doing my treatments as prescribed, exercising, getting more sleep, and being able to spend time with my family. When your gone you can't take anything with you so if this results in living longer then its well worth the struggle.
I will keep everyone posted on my wait and I'm hoping and praying that everything will work out.
I can't wait to see the positive effect this has on your health. Make sure you keep your nose to the grindstone, and just when you think you're doing too many treatments, do more!! And of course, exercise, exercise, exercise!!!!
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