27 Days And Counting…

It’s been 27 days since my last infusion. So it’s been awhile since I’ve seen the inside of a hospital room. In a way that’s a good thing. I’ve been going to the hospital twice a month for the past year and 2 months that a break is ok as well.

I’m still unsure when I will resume the infusions as I’ve yet to receive word from my doctors about when we can start. While the break from the infusion is unfortunate since I was really getting into the groove of starting to exercise more, there are also positive aspects to it. Ok, maybe not that positive but hey, you always need to look at the bright side of things.

One of those things is that it’s been 27 days since I’ve gotten poked by a needle. That’s good. I think my veins are welcoming the time off.

Seriously, the break has made me think about the benefits of Myozyme and how they’ve affected my life. They say, you never really know the value of something till it’s gone. In this case I hope it’s only temporary.

I’ve actually felt the difference. After a year of Myozyme, I can tell the difference already. It seems that I have less energy now to do things. When I was on Myozyme, I didn’t really feel tired during the course of my ordinary day. Now towards the end of the day I feel sleepy. In fact just this afternoon I’ve had to take a quick nap around 6 p.m. because I felt tired. I really didn’t do much, seeing that I woke up late this morning as well.

In terms of exercising I’m finding it difficult now to do so. I’m finding it difficult to exert myself the same way as I did when I was on Myozyme. I feel my arms are like lead. Although this gets better as I push above the 10 min level on my hand bike. They say this is the second wind, when the body shifts from a glucose/sugar based energy source and shifts to burning fat and protein. I’m no scientist so I really wouldn’t know.

The good thing though is that so far there aren’t really any adverse reactions to not being on Myozyme. I’ve been worried that there will be some since my body got used to having it the past year that taking it out will have some sort of reaction. I’m crossing my fingers it doesn’t

As I enter my 4th week of not having an infusion, I’m praying that everything will still continue to be ok. I’m also praying that we sort this out and that I can resume my infusions again at the soonest possible time.