Tuesday, August 31, 2010

HIdden diseases

I've been reading quite a bit about what are termed " hidden diseases." These are things such as fibromyalgia, chronic fatigue syndrome, multiple sclerosis, and.....Hep C. A person with any hidden disease is not apparent to people in the world around them as would be someone who'd lost a leg or a person in a wheelchair due to paralysis. I've gotta be honest here - this really makes me mad. SUPER mad! I read an excerpt from a book about Hep C that says since our disease is invisible on the outside, patients with Hep C often feel their family and friends don't think of them as classically sick, such as in heart disease or cancer and so.....they are treated as if they are pretending to be ill. Does that ring a bell for you? It sure does for me. I've been outright accused of "faking" my illness! I don't know of anyone who would choose a days in bed or miss out on important events because they are faking. Well, maybe some people would but not this one. I'm too full of spunk and life.

This is my week for blood tests and guess what, they screwed it up. I drove myself yesterday morning for all the blood work (fasting) and the lab called me in the afternoon to say they'd made an error and the blood would have to be re-drawn. For some, while a bit frustrating, it would be no biggie. For me, it's huge - I have to drive about 1 hour round trip after not eating and hope that I'll feel well enough to make it both ways. Yesterday I made it partway home, became suddenly ill and had to stop and throw up. Then I sat in a parking lot for 10 minutes trying to collect myself to be safe on the road again. I drove home but probably should not have been driving at all - my ability to pay attention was hampered by severe pain and nausea. I made it (obviously). So I talked the lab into sending someone over to my house to draw my blood here :)
I think this will work much better.

Just a day in the life of a person with Hep C....getting ready to start thinking about a transplant and seeing a surgeon next month. Lots of major changes lie ahead but I think I'm ready.