I haven't had insurance for the last year, and have been paying $200. a month for meds, along with making a billion and one phone calls to hospitals and tech places. I just moved back to my hometown (which is 3,000 miles from where I was), and immediately started writing a new resume. Then I had another doc appointment and everything got turned upside down. I knew things weren't going to be good, because the month before I moved I ended up in the hospital for a week, but I kept telling myself it was fine; it was just a fluke. I ended up being told that not only can I not drive, but I shouldn't go back to work, either.
It took three years for them to find out why I have seizures, and now it's going to take how much longer for them to keep tinkering with meds to make it so I can function? When they first started playing with meds, I ended up using a cane for three months, when I had been rock climbing and mountain biking just a few weeks before. I was the kind of girl who would do any extreme sport, always on the go, and I had one seizure episode where the paramedics dislocated my colar bone from my sternum trying to get me to breathe again, AND I had to take a two and a half month medical leave from work.
I've never wanted to look at epilepsy as a disability. To me, it's like being diabetic. You're body has a glitch, and you have to take insulin or sugar, give yourself a little bit of time, and you're back to your normal self. With seizures you 'twitch and glitch' or 'shake, rattle and roll', give yourself a little bit of time, and likewise. So why, if diabetics have a 'controllable, but incurable disease' do I get told I have a disability and that I need Social Security income like I'm 90 years old?!
Now I don't know if I can go back to work or not. I was a supervisor, always on the go. Yeah, I had a few times where I couldn't go to work, but I was darn good at my job, and loved it. But I'm 30 grand in debt from medical stuff, which supposedly can be covered if I get SSI, but I never wanted to be the type of person who had to do that. Plus, I don't know how to tell my parents, b/c my mom's in the middle of chemo for cancer. So I'm sitting at a friend's home, while she's out of town, afraid to go hang out with friends, because they changed my meds again and now I'm shaking all day and my feet wont listen to me!!!
Have any of you been through this type of thing? How do you deal with this?