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Fatboy and Beautiful Celebrate 4 Years of Bliss

Fatboy and Beautiful

Young Love - 2002

Well, not all bliss because it’s a super-rare case where a CFer has 4 years of no issues, and we’ve had more than our fair share of events in our 8 years together and 4 years with our wagons hitched in total solidarity. However, I’d be a fool to not acknowledge that they have by far been my best 4 years of my life.

No doubt

Beautiful has made her anniversary post about all of her memories of our Great Day – October 21, 2006 – on her blog, but I wanted to concentrate on my most emotional memory, which was the sum total of all of my excitement, fear, joy, and anxiety all rolled into about 20 minutes.

My best man slept over with me the night before to help me get everything ready for the day. We ran to the florist next door and got flowers to surprise her with when we walked in late that evening because we were headed on our honeymoon after lunch the next day and then headed to our church.

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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

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When to Tell Someone You Have Cystic Fibrosis

I’ve been holding onto this one for a while now. Since April, actually. I wrote this for my last English class to get my degree and submitted it to Newsweek in April. They require anything they publish to not be previously published, but it apparently didn’t make the cut, because they’ve have it for the allotted time to make a decision to publish it. Now it’s mine after the wait, so I’m going to use it here and re-purpose it for an online magazine soon. It’s more of an essay than an article like I usually write, so I hope you enjoy it just the same, despite many “givens” about CF that we already know as a collective group of readers.

That Sure Is a Bad Cold

Fatboy Living it up at the BeachMy doctor says I’m doing great. “You’re over thirty and haven’t had a lung transplant yet,” he says with a big grin of approval of my condition. Only patients who are generally compliant with their treatment regimen and not in dire need of immediate medical intervention receive this grin.

Cystic fibrosis is the most common fatal genetic disease in the United States, with over 30,000 children and adults who carry the recessive genes from both of their parents. There are over 10 million carriers (those who only have one copy of the CF genetic mutation) in the U.S., which comes out to approximately one in every 30 people.

From a lifestyle point of view, cystic fibrosis isn’t much different from progressive, terminal conditions, such as multiple sclerosis. Things start out great as a child with medicine to keep trouble at bay. Some even enjoy a blissful unawareness of the disease due to a mild mutation of the gene that causes it. Generally, in the teens and twenties (when Mom and Dad aren’t an iron grip of treatment police), things take a turn for the worse. From then on out, it’s a battle against damage done and the natural progression of the disease transforming the lungs into something straight out of a horror film.

One of the unique decisions that we face is the timing of letting others know about this genetic atrocity. Often, the symptoms of the condition make it obvious that something is different with us, but I prefer to wait until a relationship has been established before entrusting others with, what I consider to be, somewhat personal information. Unlike someone in a wheelchair or with an obvious physical deformity, I can hide or disguise my CF for weeks or months.

I began working from home eighteen months ago and struck out on my own a year ago, forming an LLC with my wife and carving out a nice niche of work in my field. The newfound freedom to travel came in handy by allowing us to go to Ohio for a family vacation and I was able to connect with another guy in my field.

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