It's ok to ask me questions. I encourage people to be curious about my disease so they know what it is. Unfortunately, people don't ask questions because they're afraid of asking the wrong thing. As long as you don't ask super specific and uncomfortable questions like my great-aunt often does, I'm perfectly happy to answer them.

I'm not fragile at all, and neither are my treatments. My treatments aren't usually painful, and they're not strange to me either. Doing my treatments is as natural as eating is to me. It's just one of the many ways I stay alive. 

Cystic Fibrosis is a huge part of my life, even if I don't exactly like that truth. It's not the only thing that makes me interesting, but because I have something that less than 46,200 people in the world have, I definitely have a unique lifestyle almost no one knows about. 

That's what makes discussing my daily life so difficult. I'm not sure if what I described above answered some of the questions or even gave an accurate description of my daily treatments, but it's my life and how I have to live it. It's so rare that people can't just picture it. They can picture an electric wheelchair or an inhaler, but I'm not sure if people can picture what I do everyday to stay alive.

Sometimes, people only understand when they see it. But even when people see me doing my treatments, they have no idea what to do with it. They can't fit it into their minds. Not even my own parents know what it's like to wear the vest. As a little girl, they'd sit me in their laps while I did it sometimes, and these days, sometimes family sits next to me on the couch, but they still don't know what it feels like to be surrounded by it. 

It's weird to think about it that way, but it's true. People can't understand the things I think are as normal as driving or eating dinner. People tell me they couldn't imagine how hard my life is, having to do treatments that look painful, and taking more pills than I can count. To me, it's just life. It may be hard, but it's all I've ever known, so I don't notice how hard it is. 

I only realize how unusual it is when I start attempting to describe my daily life, and usually fail. Not many words can describe what I do. People just have to see it to grasp the basics. Unless they have CF, they will never wear the vest. And unless they know someone with CF, they will never see the vest. In some ways, that is actually a pretty neat thought. I do something everyday less than 0.000001% of the world's population ever does in their lifetime. How epic is that?