In the past I’ve never really thought much about my future. By future I mean 10 years or more down the line. But Myozyme came. It gave me hope. Over the past year, I’ve probably been more obsessed with the future than ever. I’ve started thinking what will happen to me in 10 years. Where would my family be, where would I be in relation to them. A great fear came back. That fear was growing old alone. I didn’t want that. I’m really a people person. I like being around people, I don’t like being alone. So that gave me a big scare.
But I forgot one important thing. I thought so much about the future that I’m failing to live for today. As much as the future is important, today or the present is the most important one. The future is yet to come but the present is here. It’s real. If I obsess to much about the future and not live today, I might just find that life has passed me by. Especially in circumstances like mine, wherein before Myozyme I’m sure I’d be weaker in the future than I am today. So there’s less that I can do. With Myozyme, it’s still a big question. Although, signs point to a more positive outcome.
Today is the most important time. I should start living for today. As much as I should think about the future, I should focus on the here and now. I should stand still and look around me. There’s a lot of blessings that have come my way today. I need time to stop and smell the flowers, as they say.
I got my 27th infusion last Tuesday. This is the second to the last dose of the first batch of Myozyme on ICAP. I was just told that the extension for the ICAP has been approved for another 3 months. Fantastic news! I just hope that it arrives on time here in Manila so I don’t have to skip another infusion session.
The last few weeks have been especially good for me. I’ve been exercising more and I’m seeing the benefits. Even if they are small. My arms are getting a little stronger.
My infusion went on pretty much as expected. Quiet with no problems. Well, except that the first infusion pump we used didn’t seem to work. We had to wait almost an hour to get it replaced. Oh well. Aside from that everything went well. We’re getting a little faster in fact. We’ve cut down the time in between the adjustment of the rate of infusion to 15 minutes.
Still, I’m quite worried. Some patients have experienced adverse reactions after so many infusions. Some have experienced it after getting 20 plus infusions. I’m really, really hoping and praying that I don’t get those reactions. I’m counting on my not being allergic to most things as a good sign. Please, please God let the following infusions go well.
I was able to go home early from the hospital. We had a family dinner at home after. My uncle who’s on vacation from the US had dinner at home together with the rest of my dad’s siblings. He was set to fly back the next day. The two weeks just flew by so quickly.
It was a great dinner to cap of a relatively great infusion day. Hey, any infusion day without any untoward incident is a great day in my book.