From the Blog

The History of Fatboy โ€“ The Unfortunate Years

This entry is part [part not set] of 4 in the series The History of Fatboy
Smokie

No, I didn't smoke, but this was my attitude.

Thankfully, it’s not just me. It happens to a lot of CFers. High school is done. Some go on to college, others don’t. Now what? Without a full-time job with benefits, you’re basically a medical insurance dependent of your parents, but that is supposed to run out at 22 or 25, depending on your state’s laws.

I lived at home and commuted to USF 5 days a week for my first semester. I failed one class because I missed the final exam because I didn’t read the exam matrix right. The next semester was a recovery semester to make up that grade and take easier classes. I did much better, but got a D in Chemistry II, leading to a change in majors. I realized I was not going to cut it as a pre-medical student if I couldn’t handle Chem 2. My scholarship got knocked down to 75% tuition, no books, and I was booted from the Honors Program.

Now in Management Information Sciences, I started the third semester out with renewed vigor, but ended with an F in Accounting and a D in Macro-economics. What the heck! I’d NEVER had this much trouble in school before. Maybe I wasn’t the genius I thought I was. We will find out in Part 3 what the problem was, but not yet. It was time to move on and get a job if I wasn’t going to cut it in college.

[Read more…]

The History of Fatboy โ€“ The Formative Years

This entry is part [part not set] of 4 in the series The History of Fatboy

I’ve been “meeting” so many new CFers on Twitter since starting this site and coming to terms after 31 years that I am different. Enough occasions have popped up where 140 characters just doesn’t cut it, nor would 6 tweets strung together into a micro-story. This series is for you, my new readers, new friends, and those who haven’t been around me my whole life. Sit back, relax, and take a walk. This segment isn’t the happiest ever written, nor will the next, but you’ll love the last one – as this one is a great trilogy.

Fatbaby in the incubator after surgeryAny time I’m asked, “do you have any brothers or sisters?” I always take the easy road with a negative answer. While it’s quite true, as you can’t call them up or hang out, it wasn’t always the case. You see, I am the second-born. I was the one with meconium ileus, immediately indicating that something was wrong with me… “better check the first one now” I can only imagine was the thinking of the doctors as it all started to dawn on them around Christmas week 1978 that CF came in a pair.

My sister, Rachel, was born 18 months prior, and was always a thin girl from all accounts and photos. Despite my very, very rough start with my digestion issues, but ended up being quite the porker of a toddler. Not much is said about the end, though I know I spent a LOT of time at my grandparents’ house while she was in and out of the hospital dozens of times in the end, sometimes only being out for a few days at a time. It’s not discussed frankly for several reasons:

  • They say the hardest thing you can do in your life is bury your child. I don’t like making them remember one more time than they have to, so I don’t ask – I only know what I’ve overheard over the years, and that’s how I’ve coped for 31 years. I really can’t afford to go back to my therapist at the moment, so let’s keep it like that.
  • I have only known being an only child in every perceivable aspect of my life other than family photos and a sad mom on St. Patrick’s Day (Rachel’s birthday).
  • I don’t want to think about “the end.” I’ve heard how much suffering she had in her last months, let alone last weeks and days. I simply don’t want to think about that because the way my willpower works over these negative things that can creep into our lives is to deny their existence. Yes, it can happen, but it won’t. It must not happen now.

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What Is Your Dream For Cystic Fibrosis?

I found this on the CF Foundation’s YouTube site and it got me into a thinking mood about the future of cystic fibrosis. When I was born, the life expectancy was around 18. I’m 31 now and have met so many people in the CF community in their upper 30s, 40s, and even in their 50s.

YouTube Preview Image

I’ve said that I don’t plan on having a transplant, but I’ve also thought about what it would be like to take that first truly deep breath with “new”lungs. The reason I’m not planning on a transplant is because I think a cure is just around the corner. They’re doing genetic alteration with drugs now under testing. I know they won’t be able to reverse scarring damage to my lungs, but what would symptom-free lungs be like?

I’d imagine they would be at least twice as good. To have lungs twice as good as this is not worth skipping and going through the ordeal and lifetime of meds and appointments for a transplant.

I have a dream. [Read more…]

Who Is Your CF Superhero?

CF SupermanThis is probably more of a guy post than most, but I was always watching cartoons as a kid while I was doing my aerosols and getting pounded on for hours on end – thousands of hours per year. I watched so many superheroes, it’s hard to not be influenced by their awesome powers and be jealous of them… to be released from your current bondage attached to that noisy compressor and go fight some real evil.

My superhero of choice: Superman! Hands down, he is the penultimate superhero for anyone who has our problems. Nothing against Christopher Reeves, but I’m talking about the Superman of the comic books. The one who could launch a rocket into space by resting it on his biceps and flexing. That Superman.

Sure, we could go back and forth for hours about their super powers and how they would transform your body and life from the perverted utopian body that everyone else comparatively enjoys, so let me just lay out why he’s my choice:
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