A little over eight years ago, I was diagnosed with a serious illness. At the time of my diagnosis, I was told I would possibly make it for 15 years. During the last eight years, I received new prognoses ranging from 15 years to six months. My situation changed a year and a half ago through the success of a clinical trial. It was quite a change from three years ago when I was told I had six months.
Dealing with my health situation was not easy. My way of coping was pure denial and not reading everything in the medical literature. I dealt with specialists, multiple opinions and approaches to the disease, regular biopsies and countless blood draws. I went to at least five major medical centers in different parts of the country. The blood draws were the worst because at any appointment, I could receive the news that my situation had changed.
People never understood why I was so private about my tests, my illness or treatment decisions. Easy. If I talked about it then my situation was real. I didn't want to feel I had to provide regular updates nor have people express their opinions on what I should do. Plus, almost everyone disagreed with my approach towards treatment.
It was very hard to explain my level of fatigue. Very few people understood how I felt since I didn't look "sick". I didn't lose significant amounts of weight, hair, or gasped for breath. Some people said they could detect the fatigue. Overall, I was glad that no one could tell the severity of my illness since I was able to go under the radar with friends, family and employers. Hell, I waited a year before I even told my family and closest friends. When I was first diagnosed, the physicians were more concerned with a heart condition that was diagnosed at almost the same time. They cured that problem.
I was lucky that I was never denied health coverage for a preexisting condition. I never had to face the financial devastation of bone marrow transplant. I was not put on drugs that would leave me bankrupt. I still had out of pocket expenses that added up, but not like the other millions of people who suffer. I had doctors who fought through red tape to get me at the front of the line for specialist's opinions and who made themselves available to provide any assistance. Everyone cooperated with my family physicians.
Most of my luck was my age. I was at an unusual age for a rare disease. I turned down trials. I rejected treatment options. To this day, I don't fully understand what made me change my mind and join a trial. I no longer have monthly blood draws. I haven't had a blood transfusion in almost two years. I can go to the doctor without fear. I don't even receive a priority status for the H1N1 vaccination. I can attribute my fatigue to normal reasons.
I don't take my health for granted because I am not cured. I just have faith that my last physician was right in telling me that I was given a second chance. He couldn't tell me it would last forever, but it was enough to let go of the fear.
The point of this? I'm probably preaching to the choir since most of you probably support changes in our healthcare system. As I said before, I was lucky with my health insurance. I won't lie and say it didn't change job choices because it did. But, I am alive and relatively healthy.
1 comment:
Em,
I have always wondered what was going on with your illness, and since you never said anything, I wasn't sure. I'm thrilled to hear that you were in a trial that has helped, if not cured your disease. It has worried me, esp. when we were out of contact for so long.
Glad to hear things are on the up healthwise. :)
Tasha
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