From the Blog

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…]

Where Have You Been, Fatboy?

December 21, 2010

Birthday DrillLying low and keeping my head down and blinders on so I can wrap up a boatload of project work before my week off for Christmas and my surgery date set for January 6th. It’s been a heck’uva first half of the month blasting work out the door, but I need to have a bit more cushion for January to hold us over if my antibiotics make me too nauseated to work again for the duration.

We celebrated my 32nd birthday on Saturday with some cool presents and a day with the in-laws and out-laws, I mean parents – they live on a tropical island by choice, not in exile. /grin Dad took me to Lowe’s in the morning to go pick up my present from them. I was clueless, but my heart started racing as we kept walking along the power tools section, stopping at the hammer drills. Since Beautiful has a pre-disposition to hang things on our walls, a good drill comes in handy around here. I just wish we had this baby back when I drilled 60 tap screws into our garage masonry when we moved in. The 3 holes that had gone unfinished due to some obstruction were obliterated in as many seconds, total, with my new De-Walt drill with a masonry bit. It went through like buttah, slamming the chuck into the wall before I knew I’d squeezed the trigger. Cooool.

[Read more…]

Fatboy’s Thankful List on Thanksgiving Day

November 25, 2010

ThanksgivingThanksgiving Day is upon us. Today is my day to rest, relax, recuperate, and eat tons of food and hydrate like a sponge. We are heading over to my in-laws’ for the day around 11:00 for an early lunch with turkey dinner around 4:00, followed by an evening of games and leftovers with even more friends. I think we’ll have 13 people for game time, so it should be plenty of socializing for this socially-starved introvert.

Despite my recent turn in health that hasn’t actually culminated in anything super negative yet, I have plenty to be thankful for today. Here is what comes to mind as I try to type as my hands are shaking all over the place from my Vest treatment:

  • Beautiful – who could ask for a better partner in life, trials, and adventures? She’s more than I could have hoped or asked for. Period.
  • Eternal security – should something happen to one or both of us before we have a chance to expect it, we rest assured of our eternity with Jesus who paid the price once and for all to all who accept the gift.
  • Family – I’ve got parents who call me internationally “just because” and in-laws who consider me one of their own, too. I call my grandparents every week and love to hear how things are in Ohio (go BUCKEYES!!) and they love to hear how we’re doing since they don’t travel any longer. It’s good to be loved.
  • Health – what health I’ve got is great. I can pretty much do everything I want to do and can do above and beyond what I need to do.
  • Finances – we have no pressing needs, just goals and future savings needs to be wise, but we are blessed with two jobs and full health insurance.
  • Support network – we’ve got our family and a wide array of church family available to help if/when we need it. We’ve had help moving and love to give back when called upon.

Have an awesome Thanksgiving Day, everyone.

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