Surviving on Disabilty

I've always been one of the "lucky ones" with mild CF. Of course things have declined over the years, but last year I was still doing well for a 36 year old with CF. In 2014 my FEV1 was hanging out in the low 70s. Then I caught a bad bug September 2014, and within 3 days I went from being healthy, to laid out in the hospital for 3 weeks, on oxygen for the first time ever, with an FEV1 of 51%. I've been struggling ever since. I had another drop and round of IV antibiotics in May, and my FEV1 now ranges from mid 50s to mid 60s. I tried to return to work afterwards, but between the exhaustion and shortness of breath it was just too hard. I left work at the end of July, and am currently receiving temporary disability and exploring Social Security. It's been a real struggle slowing down my life, but I've also been struggling against my doctor. He's pressured me not to give in to the "disability label," and to work part time instead of full time. The thing is, part time work isn't going to pay the bills, especially if I keep going out on IVs for 3 weeks every 6 months or so. My hope is that I can get Social Security, and then have the freedom to work part time while still having a safety net when I get sick. In the meantime though I'm having a lot of insecurity about my decision, and often feel like I'm just being a baby and should push through this. I'm wondering if anyone else on disability/social security can tell me about where they were at health-wise wh...
Source: Cystic Fibrosis Adults Forum - Category: Respiratory Medicine Authors: Tags: Adults Source Type: forums