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My Life “Before I Had CF”

Posted May 20 2010 12:00am

"Before" I didn’t always have CF.

You can ask Beautiful.

Of course, that’s ridiculous. I’ve always had CF – I just didn’t behave like I should have given reality. Treatments were an option based on how I felt at the time and how effective I thought they were. At the top of the list, and the only indication in lifestyle, was my definite need for enzymes. Even those would get snuck in at a meal without people being wise about what was going on. I had accepted that if I was going to need IVs every 6-9 months, why bother with all of the time, effort, and money to go crazy with treatments that, in my mind, may or may not be as effective as I deemed to be a worthwhile treatment.

I avoided stairs on campus whenever possible. I always seemed to have an excuse to not help someone with a physical task as simple as bringing something in from the car because I didn’t want to have a spaz. I didn’t remember what a semi-deep breath was like. I didn’t pay attention to my weight because it was depressing to weigh in under 110 and I had no idea how to look “normal.” I didn’t want to exercise because I felt like I couldn’t exercise (remember the part about stairs?). I wasn’t as happy; in fact, I may have actually been a bit of a drag at times. I am the eternal optimist to the point of being annoying, but I felt even that slipping away.

Along came the shift in mindset the week I started CF Fatboy to change all of that. I got the bigger picture and got the crazy idea: what if I’m actually able to reverse the effects of aging with CF and become as healthy in my 30s as I was at 18? What if? Is it going to be worth it? Well, it sure beats the heck out of an automatic need for a transplant… one which I might not be eligible for if I’m not doing everything prescribed. I know for a fact that my doctor won’t put you on the list if he catches wind that you’re non-compliant, so I’d be up a creek without a paddle if things took a turn for the worse later.

Here is my new view on living with CF since my 2010 epiphany:

  • It’s okay to pretend you don’t have CF around other people. It’s up to you when you let people into your “circle of trust.”
  • Don’t let CF slow you down. Make it drive you to bigger and better things than you think you can do.
  • Don’t meditate on what you used to be able to do, rather use that as a goal to return to. For me, it’s to run (competitively, not some crap jog/shuffle you see on the side of the road when people think they’re jogging, but they look like an idiot) in the Gasparilla 5k next February. I used to run track, play flag football, men’s softball, and indoor soccer (the last 3 into my college years). I shall return in my 30s.
  • What you were born with is better than anyone else’s equipment in you. As awesome as it’d be to take a deep breath with new lungs, make it your goal to take a deep breath with lungs. Even after insurance, it costs about $1,000/mo to keep new lungs alive and your life is wrecked for 10 weeks of monitoring, physical therapy, and recovery.
  • Everyone can improve if they start early enough, barring really nasty resistances or other complications that exacerbate the CF. Beautiful started finding the stories and sending them to me – people who went from 30% to 68% or higher. At 60%, I was doing windsprints and beating guys to the end zone for the long pass. I want that again. I will have that again, and you will see it happen.

Who’s with me?

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