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The Road Less Traveled

Dark sideOr rather, “never before traveled.”

The road I’m referring to is the one we’re on, as active, positive members of the CF community. I am/we are standing on the shoulders of giants who figured this stuff out a while ago: that you can not only live well with CF but actually improve your health as you get older to reverse the stupidity or bad/unknown medicine of the past. I’m not the first, nor the last to realize this and mobilize people into changing the standard of thinking about cystic fibrosis, but we as a group are the first to do so because there once was no hope. We are a collection of just a couple of generations of people who have a chance to have a different relationship with CF than any before us.

Hope for the hopeless

There was a day when your child simply died after a few days or months. If they were older, they were undernourished. If they were a newborn and an autopsy was performed, they were full of crap. The next advancement was being somewhat nourished for a time, but succumbing to pulmonary failure by 7 or so. Today, given the right genes, medicine, and attitude, we have CFers in their 50s that still haven’t needed a transplant.

While not true for everyone, there is a growing trend of seeing people into their 30s, 40s, and beyond before their lungs cry out that they have given out. [Read more…]

200th Article: Changing the Standard of Thinking

Well, we’ve done it! Fatboy has 200 cystic fibrosis posts out to press since March that have changed my life and many of yours, and I couldn’t have done it without you reading, commenting, and spurring each other on to become better than we were the day before. Sure, there are times of two steps forward and one step back, but think of where you and I were when we started, each at our own time. We’ve encouraged and informed until our collective body is better for wear rather than letting nature take its course on us.

Congrats! Sit back and relax (if you can) for this long, evolving brain dump with an excellent climax and conclusion that won’t disappoint. (Or you can join my Changing the Standard of Thinking campaign now, knowing you want to without reading this).

Time for a major change

If there is one thing certain about my life it is: your life will always be in a state of change, no matter how hard you try to stabilize everything. I started this site with the two-fold goal of journaling my journey to 23BMI and to test the waters to see how I handled essentially “coming out of the closet” about my CF in a much more public way than ever before. My weight has come back down the low to mid 120s, but my doctor is very happy with things as they are, and other life events are preventing me from keeping eating as my primary full-time job. In order to ensure being able to put any food on the table, I’ve had to concentrate on completing the work that is scheduled and leave eating to mealtimes. But there is good change in the air…
[Read more…]