At my last rheumy appointment, we decided that I’m going to stay on it, at least for a while longer. My doctor believes it’s working, even though my CK level doesn’t get down to normal levels. He is referring me to a neurologist, due to the fact that we both think I have some sort of muscle disease that is making matters worse. Hoping to get in for that appointment soon!
Today’s infusion went well. I had the nurse I had last month, Susan, since my regular nurse, Elizabeth, is still out on medical leave. I’m hoping she’ll be back soon. I do like Susan though. She’s so quiet, doesn’t really bother me, and is very nice.
I didn’t have any side effects today, except the extreme fatigue. I think I fell asleep for about 20-30 minutes today. That’s how I sleep at night too. No wonder I’m always so tired.
My port is still working like a charm. I’m so glad I got it! I just wish my doctor would’ve approved it sooner! He’s always so difficult!
Day 2 is tomorrow, bright and early at 8am. We have to start early, as it takes about 7-8 hours to infuse. I wish I could go to bed now, as I’m exhausted, but I have to wait until 10pm to take the dog out for his last potty break. No, I don’t have any help!