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The Road Less Traveled

January 18, 2011

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…]

Does Cystic Fibrosis Make You Bitter or Better?

January 9, 2011

Super-DuperI’ve heard the phrase a few times over the years, but got a refresher today about having a good attitude. When bad things happen, you always have the choice to be bitter or become better as a result. It’s always a good thing to periodically evaluate your life and ask yourself which you allow to happen.

I’ve make the distinction between the two basic types of CFers: the down and out who have given up on living life to its fullest and those to take the bull by the horns and drive it into the ground, even if they get tossed into the air and gored a few times in the process.

I happen to be the latter type, as are many of you.

CF has, without a doubt, made me hundred or thousands of times mentally, physically, and spiritually tougher than I would have been if I had gone my whole life without a sick day, restrictions/discrimination due to having CF. In every instance there was a choice to be made. In the vast majority of them, I chose to make myself better, tougher, smarter, and more mature.

People are watching you. If you’re a parent of a child with CF, they are watching you. You have to be strong and become better, too. If you don’t they will accept your view of what is happening to them as reality and it will most likely be an unchangeable reality to them – as perception becomes reality due to thousands of factors of mental and physical activity that affect one’s health.

[Read more…]

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