Blog About Living With Cystic Fibrosis

I’ve been blogging since October 2005. It all started innocently enough: a daily diary of my gameplay time in the online game, World of Warcraft. My memory is so terrible, I thought it would be neat to create a daily account of my time in the game, and ended up creating a whole persona and eventually a following of fans that would follow me from game server to game server as they filled up and got too slow to enjoy playing on. It was an incredible sense of “someone cares about what I’m writing about.”

Traffic got up to over 1,300 unique visitors per day and I was raking in the money with link ads and affiliate sales. Those were the golden years of my blogging life. It’s stalled at 801 posts, even though I still play a few hours per week to relax – I just haven’t taken the time to continue posting my exploits. Financially, I should… those were good days.

Time for a personal site – how about talking about CF?

In May of 2007, while leaving for Chicago for my first blogging conference, SOBCon (no, not that kind of SOB – Successful Online Bloggers), I got onto my host and created my personal blog so I could talk about something other than my digital persona without being weird. It turns out that most of my regular readers actually cared about the person between the chair and keyboard, but it looked strange to me to have a story about Beautiful freaking out about a spider on a site dedicated to a game. It was time to have a personal site. I just wanted to have a place to post everything about my first trip to Chicago for a cool geek conference. A WoW blog was no place to house that sort of content.

Yet cystic fibrosis hardly ever came up. I just did a search of the 445 posts on my personal site, and the phrase “cystic fibrosis” only comes up 13 times in 3 years. I clearly didn’t want to talk about it.

Writing brings validation and reality to a topic

I didn’t want it to be a part of my life. By blogging about it, I felt like I was giving it a special place in my life; giving it permission to have an influence over me. It’s no different than a fat person not wanting a full-length mirror, really. I didn’t want to “look” at my CF every day.

Looking back after over 100 posts here and the responses and new friends and the general increase in my health since February, I’d say that is true: blogging about cystic fibrosis does earn it a special spot in your life. I’m saying that to be a good thing, when done right. By right, I mean that the blogging should be done as an expression of your hope, an outlet for your fears and anger about CF, and to provide the world with a look at what life can and is like living with a chronic, currently classified as terminal, disease.

I’ve met some wonderfully eloquent CF writers in the last 4 months, when just that long ago, I didn’t want to have anything to do with CF-related things. Beautiful had to send me links to Run Sickboy Run to get me to read anything over there… because I didn’t have CF. I also ignored the CF Forums with the same vim and vigor.

The straw that broke this camel’s non-CF blogging back

Is the glass half-full or half-empty?

Then I got those dreaded February PFTs that came in with a 27% FEV1 that puts me in play for the doctor to move my clinic day to share with “those people” on “that list” for “that surgery.” It was time to do something about it, and nearing the end of my IVs, I started CF Fatboy on Posterous with this post that I migrated here when I realized I was going to keep up the good work: Wii Fit BMI Update & Photo – it was my first time to break the 20 BMI glass ceiling that I had only dreamed of before.

In short, you could say that blogging about CF has improved my life since I’ve gained 15 more pounds from the all-time high weight that I was at when I started out on this blogging journey to improve my lung function through weight gain and 100% compliance. Blogging is holding me accountable. Blogging is getting me sufficiently educated. Blogging is working!