The woes of healthcare
As some of you may know, I suffer from a severe case of Chronic Fatigue Syndrome. Something that keeps me in bed most of the day and has prevented me from leaving the house except for doctor’s visits. I’ve been essentially housebound for nearly 5 years. I just don’t have the physical energy to go places. There aren’t any real treatments for Chronic Fatigue. Some people have been helped by treating the symptoms in various ways and when successful they were able to lead somewhat normal lives. I was not so lucky. I put myself in great debt trying pretty much anything that might help. Recently I discovered a new medicine that has had decent success helping people like me. They call this an “off label use” because it was not originally designed to treat CFS. And there is the problem. Insurance rarely covers off label uses of medicine. I thought if they didn’t cover the medicine it might be worth it just to pay for it myself. We asked the pharmacy how much it was. 2 months worth of pills would be $5300. That is over half what I get a year in disability. Before I learned this I really had my hopes up. Everything I read online about this medicine seemed quite promising. I fit all the variables perfectly. They had a very good success rate treating people like me in studies. I really thought this had a chance of at least improving my condition. But I don’t think I’ll know anytime soon. I don’t see any way of getting it. And asking someone to risk $5300 on something that may not help me at all…seems unlikely. After I heard the news in the doctor’s office today I found myself crying in an elevator, which I can say is a little embarrassing. So I’m back to waiting for someone in a lab somewhere to figure out how to fix me. It’s hard to find ways to keep going when all I get is bad news. I think I’m going to look at pictures of kittens for a while. Kittens always help. I don’t post a lot of serious stuff on my blog, but I really needed to vent. Sorry if I bummed you out any.
