A Monster in the Basement of my House
Someone once described living with Hepatitis C like living with a monster in your basement. Sometimes it sleeps soundly without a word; sometimes it roars and complains and brings about fever, itching, brain fog, headaches, muscle cramps,insomnia, chronic diarrhea,ascites, fatigue and depression. I've experienced all of this, and many of you have as well. To make things worse for us, the support for Hep C patients lacks the solidarity of the AIDS network, or the warmth we give to those suffering from Breast Cancer. Hep C is a nasty little disease that one is less likely to talk about. Besides the aforementioned symptoms, I have had to suffer in silence, and indeed, to hide my pain from those I work with, and the children I teach. It's been a long and lonely road for us.
I have participated in numerous studies: Interferon, Interferon with Ribavirin, liver vein pressure measurement, and nutrition studies. I have had numerous tests of my blood, stool, and urine, along with many Ultrasound tests and an occasional MRI. Every six months I get a gastroscopy to band the veins that form in my throat.
I have made all the right lifestyle changes: I don't smoke; I don't drink; I watch what foods I eat and I exercise regularly. But still I find that I feel a need to advocate for the public funding of a drug that may extend my life. It's frustrating. I believe that I got Hepatitis when I foolishly volunteered to have a small tattoo for my girlfriend who needed a subject for a short film she was doing as an assignment for college.
Why then must I stand like Oliver Twist asking for another "bowl of porridge" while many others fill up hospital beds due to poor eating habits, drug and alcohol abuse, and other forms of neglect? My transgression was made "once" many years ago, while many other people seem to "continuously" do everything they possibly can to "not" stay healthy, and then expect the health care system to take care of them. And it does.
Perhaps I'm being a bit harsh and judgmental, but I feel that we (Hep C patients) are living under harsh conditions and we are being judged as to whether we are "worthy" of financial help that may be offered by Alberta Health Care.
On one level I am grateful for all the careful monitoring and medical expertise I have received. While the experimental drugs I have taken have not helped me to clear the disease, I was at least given a chance. I have volunteered to help with the progression of science so that a cure would be found. I am at the "end-stage" of Hep C with cirrhosis, and would like to benefit from the new treatment that I have, perhaps in a very small way, helped to create.
I'm not interested in complaining or telling everyone of the pain incurred with this disease. Others with this condition know this pain only too well. I "am" interested in action because, plainly speaking, the end may be near.