wendycaroline911

I guess hope and laughter. This actually brings out something very positive I have learned about CF. We are positive people. I'm not sure why. We were given such a cruel disease, but we make the most of it. Why let it bring you down when there is nothing you can do about it, but make the best of it? I just take life one day at a time. I make sure that every day I am doing what I WANT to do and not what I think I have to do. I travel a lot. One thing I really want to do is see the beauty of the world, so I just make sure that happens. You get your priorities in order very quickly. I think we live just as fulfilling life as anyone else, just quicker.

This is such a good question! I chose saxophone when I was just a kid and still had the lung function of a normal person. The short answer is YES. Choosing this instrument has given me great trial through the years.

The long answer is that I have had to fight and bring awareness to a lot of people I had to deal with. College was the hardest and most trying part of this. My parents had to carefully have the conversation with me that I was never going to be able to be a performance major because I think they knew that I wouldn't have the ability to play forever and musicians don't exactly have very good health insurance. It's also right about the time when I started having enough issues with my CF that it was affecting me on a daily basis. I didn't know how to deal with teachers and other students not understanding that I was sick (because I don't look sick). I actually had to go to my doctors on advice on how to deal with this. There were some encounters that led me to tears out of frustration. I didn't want to whine about my disease or anything, but I just couldn't always practice as much or play as long as my peers. I successfully put on my senior recital. We were clever and had 2 of my fellow saxophonists play in between pieces so that I had a chance to rest between pieces. We also had to cut some pieces down because I couldn't get through the whole thing. I actually have most of the recital up on YouTube if you want to check it out. Just look up The Living, Breathing Wendy Senior Recital. Playing a wind instrument is excellent exercise for your lungs too, which is one of the best treatments you can do to keep your lungs happy and healthy.

ENERGY. That is seriously the biggest issue I have. It's an invisible illness. I look like a totally normal person on the outside. It takes me so much energy just to breathe that I often am too tired to do everything I want to. The other thing is the cough. People always think that I'm sick or make fun of me for smoking too much and don't realize that it kind of hurts my feelings because I can't help it. I would LOVE it if I never coughed again.

The treatment are pretty easy and I can play video games, read, go on the internet (I am doing a treatment right now). However, they are very time consuming and keep me pretty busy. I do three 45-60 minute treatments per day along with several pills. Then there is the hospitalizations that last for 2 weeks (I got in 2-3 times per year, which isn't all that bad for a CFer). The hospitalizations are the hardest part of CF care. They are lonely and long and the IV antibiotics can make you feel really sick if your body doesn't agree with them at first.

YOU ROCK. That is literally my GO TO video game in the hospital. Everyone always says it's a trap to play with me. I kick butt. :)