I'm a first timer here on the CF.com forums, but I've had CF since I was diagnosed at 6 months. I'm 23 and been through all kinds of hell (who hasn't with CF really?) I've had 29 surgeries and I need one more (tonsils), but anyway long story short I have a question or questions.
I feel smothered. Literally. When I was born we were able to get medical insurance before I was diagnosed. 18 years and over 2 million dollars later the insurance company dropped me. That was when I was going into the hospital every few months/several times a year. Now I'm older and healthier, and I go once a year.
So what do you do to live your life normally without insurance and working a job? How is that possible? I can work fine. In fact I'm a photographer, I have my own business...well I'm trying to start it. But there's limits and it's because of medicaid. I hate it. I feel like it's a death sentence put on by the government. Why? Because for some stupid reason if you qualify for medicaid you have to qualify for a SSI check...well I don't give a rats behind about a monthly check. I can make 60K a year in photography, but without insurance I can't ever make enough to pay medical bills, or the $2000 in medicine every month. It's basically a death sentence without it. Free care in this country sucks. By the time I get sick enough to go into the hospital room of a free hospital I'd die in the waiting room waiting to be cared for. You all know it's true because sometimes CF can be that bad. So what do you do? Try to pay the bills? Do you have insurance? Did you find someone to accept you? What alternative is there? I could afford the premiums if someone could just approve me for care.
I feel like I want to be free of it so bad I'd take my chances of not having medicaid at all. At least I'd die happy knowing I was able to do what I wanted to do in life without any restrictions.
I feel trapped. It's the only thing holding me back from living me a normal life. I'd like to see some insights or maybe experiences with the matter. Do any of you own businesses or work full time? How does that work when you don't have insurance to cover the cost of your health?
Thanks,
Matt-
I feel smothered. Literally. When I was born we were able to get medical insurance before I was diagnosed. 18 years and over 2 million dollars later the insurance company dropped me. That was when I was going into the hospital every few months/several times a year. Now I'm older and healthier, and I go once a year.
So what do you do to live your life normally without insurance and working a job? How is that possible? I can work fine. In fact I'm a photographer, I have my own business...well I'm trying to start it. But there's limits and it's because of medicaid. I hate it. I feel like it's a death sentence put on by the government. Why? Because for some stupid reason if you qualify for medicaid you have to qualify for a SSI check...well I don't give a rats behind about a monthly check. I can make 60K a year in photography, but without insurance I can't ever make enough to pay medical bills, or the $2000 in medicine every month. It's basically a death sentence without it. Free care in this country sucks. By the time I get sick enough to go into the hospital room of a free hospital I'd die in the waiting room waiting to be cared for. You all know it's true because sometimes CF can be that bad. So what do you do? Try to pay the bills? Do you have insurance? Did you find someone to accept you? What alternative is there? I could afford the premiums if someone could just approve me for care.
I feel like I want to be free of it so bad I'd take my chances of not having medicaid at all. At least I'd die happy knowing I was able to do what I wanted to do in life without any restrictions.
I feel trapped. It's the only thing holding me back from living me a normal life. I'd like to see some insights or maybe experiences with the matter. Do any of you own businesses or work full time? How does that work when you don't have insurance to cover the cost of your health?
Thanks,
Matt-