1 Week In

I have been on Valcyte one week. The differences between being on the Valtrex and Valcyte are clear but not extreme. I am back to two naps on Valcyte. I have been getting about 11 hours of sleep at night. (It would probably be more if not for the scampering of little feet.) After breakfast and some reading I get that feeling I had when I first started the Valtrex where I have no choice but to sleep. After lunch I get in another nap while fading in and out of guided meditations on youtube until my alarm goes off to remind my body of the most important part of the day- picking up the kids from school!

I have learned to delegate a lot of responsibilities during this season, I want school pick up all to myself. I love the way the kids see my car in line and start to smile. Sometimes they even come out of school holding hands or skipping together. When they get in the car they both rush the front seat to try to be the first to talk. The whole thing completely energizes me and puts a smile on my face. Sometimes, if I'm having a good day we'll stop at Starbucks on the way home for a hot chocolate.

I have released myself from all other responsibilities- cooking, cleaning, grocery shopping- and delegated them to someone else. There is a huge amount of freedom in allowing my body to follow its desired rhythm of rest. Dr.Lerner has been telling me this for months but I insisted on continuing on in my state on exhaustion. I thought I would find guilt in rest, but I'm finding freedom!

The most difficult part of being on the Valcyte has been the extreme pain in my neck and upper back that I've been getting in the evenings. I don't know how to explain it because it is like nothing I've ever felt until my life was altered by CF. Different nights I try different things. Some nights it is a scalding hot bath. Other nights it is ice. Other nights Jim generously gives me a massage or I lay on a Migun bed. Sometimes it helps to talk to distract me. Sometimes I can't open my mouth because it takes focus not to cry. Simply put, my prayer today is that this nightly muscle pain would go away.