Since my last post, a lot has happened. Our team total for the CF Walk climbed to over $7,000! I am amazed at the number of people who stepped up and shared their gifts towards a cure and advancing treatment. One thing that I have learned from meeting other people and families dealing with CF is that it doesn't always look the same. CF is an ugly disease on its most well behaved day. In the last few months, my blog has raised some controversy. At the end of the day, it is just my blog. There is no right or wrong way to "handle" CF. The reality is most days find me fighting off CF to live my life.
I have a really smart friend with CF who has always been dealing with things one step ahead of me. For a time, we shared the same doctor. Even then, we weren't walking down the exact same path. She talks about how it is hard for other people to understand CF because you can't see it. It is easy to ignore or try to wish away. I like to say that denial is a happy place. Some days I think my daughter understands it best. We were shopping for groceries recently and she noticed me stop and lean on my cart while I coughed. She went right behind me and started doing manual percussion in the middle of the meat aisle. That is our normal.
Our normal includes trips with our doll to get a port flush. Of course, Mommy needs one and our doll needs one too. When we stop at the pharmacy, they know us and play along to get our doll medicine. I think one of the hardest things about CF is how you age before your time. My daughter shouldn't know anything about "achies" in your lungs. I shouldn't be trying to figure out my living will or power of attorney in my spare time. She just learned that I was born with "achies" and it doesn't just happen when you become a Mommy.
So, yes, some days I might be crabby. Chances are good that I am tired. My blood sugar could be high. My oxygen could be low. The perfect balance is hard to find and it often changes if you blink. So, please give me the benefit of the doubt and know that I am barely holding my head above water on the very best day. If it looks like I am, chances are good that I am faking it and, God willing, it might just work.
Blessings,
Cindy
