I decided to put this entry here as well. I think more people would see it that way. I'm not really feeling like re-telling everyone so hopefully as many people will see the journal as possible. New entries will still be here.
Um, Yeah... Whatever - September 20, 2006, 1:03 pm Today my mom called the doctor in Calgary that was the doctor really in charge of the clinical trial. She talked to him about how the enzyme wasn't helping and how we are having trouble getting the dose upped. He said basically that my muscles are probably too far gone for the enzyme to work and that doubling the dose may or may not do anything. In any case, Genzyme doesn't want to double the dose because of the cost and getting the government to pay for the enzyme at a higher dose would be very difficult because it hasn't helped so far. So, if the dose is not upped I am quitting the enzyme altogether. I knew it wasn't really helping at all, but giving up is very very depressing. It means there is no help or hope out there right now. Everything seems so pointless. I will die of this disease. Of course, I did know that but now it's kind of final. I'm not doing any worse than I was but the progression is clear to me, I know what will eventually happen. I just don't know the timeline. I'm not sure what to do with myself or how exactly I want to deal with this or how dealing with this is possible. I see my shrink next week so maybe that will help or not. It just feels so horrible to let go of this hope we had for so many years. The waiting for the enzyme to be available and then the excitement when it was. All the things in the world that I will never do or see or be.
