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3 Things I’ve Learned About Life Because of CF

Colored GlassesHaving cystic fibrosis makes you a different breed one way or another. There are stronger CFers and  there are weak, defeated CFers, but none of us are “normal,” no matter how hard we try. We are automatically changed, forged by CF into something different than who we would be without it.

A favorite topic among CFers is whether or not you got a genetic a re-do on life if you’d take it because of the different person you’d be without CF. I’d give up CF in a heartbeat and take my chances with my body working correctly and see what kind of person I’d be. A few things would be different, but not too many, I don’t think. One of the things is perspective. Here are some things I’ve learned about life because I have CF.

  1. Life is short: Yeah, yeah. That’s cliché, but “normal” people say that. We have CF and have been given a different life expectancy number from the time we can remember. What we do with that expectation and how we let it affect us is what makes us different. [Read more…]

What Drives You?

DriveI’ve been having an heart-felt back and forth with a concerned mom via my contact form whose 16-year old son has become non-compliant recently. He’s described as wonderful and smart, but just doesn’t care to do many, if any, of his treatments any more and stopped a sport he had played previously. I got to wondering what drives him, because I’ve been there, done that, and bought the t-shirt.

I had to burn that t-shirt the day I knew I wanted to marry Beautiful, but it still didn’t fully change what I was doing to make sure that I gave us the most time together. I’ll place a lot of the blame on my eFlow not working properly to allow me to actually have the time in the day to do my treatments (and I probably wasn’t getting the meds as I should when I did them most nights). Since that’s a cop-out, I’ll admit that I should have been more aggressive in doing whatever it took to get to a solution to be able to do my nebs properly. I take full responsibility for that end of the deal. It was stupid and will never happen again. Now, let’s get back to the underlying issue at hand: drive.

“If you do not change direction, you may end up where you are heading.”

Lao Tzu

[Read more…]