Breathing Deeply: My Life With Cystic Fibrosis

Today's one of those days where I feel like the treatment is actually worse than the disease. I'm still itch free, so I'm trying to focus on that and be glad. It's the other side effects that are giving me a rough time. The colistin has made my fingers, toes, mouth and scalp quite numb. I'm having a hard time walking around without stumbling. Every time I stand up I can't see for at least 15 seconds. It feels like an eternity. My blood pressure has always been low, so that's probably what's causing this.

I'm so tired these last few days. All those strong drugs pumping through my system are really doing a number on me. I take cat naps all day, and then at night I conk out for lengthy periods of time. The most troubling thing is that even though I'm eating, my weight is awful. I can't wait until I get more lung function back so I can work out harder again. I need to rebuild that muscle mass.

When I'm in the middle of IVs, it's always hard to look to the future with optimism. In the midst of all these nasty side effects, it's difficult to envision a more stable health status. I worry about how much longer I'll be able to work. I know it's not productive or healthy to worry about things that are out of my control. That's something I need to work on in my spiritual life.

I know God is always faithful, and I also know that he doesn't always let us in on his plans. We just have to move forward with faith. My husband is great at reminding me of that. Whenever I get caught up in worrying, he brings me back down to ground level and tells me to calm down. I love that aspect of our marriage. I'm so blessed to have Brad with me on this journey.