I've often told people that I'm a bad example of cystic fibrosis. Most people I meet have no idea that I'm “sick,” so when they learn I have this disease, they are confused. If they know anything about CF, they can't believe that I'm not only alive, but that I'm doing so well. If they don't know anything about it, then they get the idea that CF isn't so bad.
Most people know me as the girl who loves Sour Patch Kids and is always at the gym or on the go. They don't see me hooked to my vest daily doing breathing treatments. They don't see me cleaning and sanitizing equipment. And most people don't even notice that I take my enzymes (and vitamins) when I eat -- I've gotten pretty sneaky over the years. No one hears me coughing at night or having to get up for a puff from my inhaler (other than my husband and dogs, of course). They don't see that CF is always lurking in the shadows.
Even with all that, I'm healthy and I feel great. I know how fortunate I am to have the energy and freedom to do the things I want to do, like work out and travel. I read a lot of blogs and follow others with CF on social media. It encourages me when I see people like me going about their business. But I know there is a drastically different side of CF … one that I'm not too familiar with.
I see the stories of other people with CF who are suffering. They are fighting to breathe. Others have taken their last breath. It infuriates me that I'm OK, while there are others battling. I feel guilty that I can run in the backyard with my dogs and others can't walk across the room without oxygen. How can we have the same disease? Why is CF so selective about whom it wants to torture?
Just this year, I know of two CFers who got new lungs. Although this is great and has given them another chance at life, their need for a transplant shows how destructive CF can be.
This disease is not kind -- it is cruel. I know two CFers who passed away. Why them? Why don't I feel worse? Is this something other people with a terminal illness ask themselves?
Although I am beyond thankful, I just don't know why I'm so fortunate. I wonder when my turn is coming. We have some great new medicine, but we still need a cure.
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