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Blog About Living With Cystic Fibrosis

This entry is part [part not set] of 19 in the series What CFers Do

Mac KeyboardI’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. ๐Ÿ˜‰

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

Vest-BloggingI 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!

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  1. Cysticgal says

    I think that we can both make a case for the fact that blogging causes immediate weight gain. The formula: Sitting on butt while typing + late night stat watching = late night snack foods + hungrier wakeups = 10-15 lbs in 3-6 months.

    They should add this to the CF books and BMI handouts!!

  2. Totally. I do usually stop eating after Beautiful goes to bed, but I've been
    trying to down one more Boost Plus before I head upstairs. I think this
    should definitely be suggested to every parent when they find out and to
    every teen as they go off to college (nothing like parents watching your CF
    on your site).

  3. rhondab30 says

    I am very grateful for those who do blog about their CF. Jesse's site by and large has been the one we have most in common with. I have learned about some things that John can take to his next appointment in regards to different treatments. Things we may never have thought about without his site. It helps to know that it isn't sunshine and roses either. Being honest and open about how CF is really effecting your life. The Good, Bad, and Ugly. No 2 CF'ers are created equal, but the up and down emotions of living with such an awful disease are real. It helps to know there are others out there we/you can turn to for support or just a gripe fest who will understand and not judge.

  4. Well said, Rhonda. Thanks for being a reader – you've been a great addition
    to the comments section.

    I took quite a few changes to the doctor in my last couple of clinics and
    countless e-mails to my coordinator. Some stick, some slide right off the
    wall, so it's worth asking about. Such as weight gain via appetite control:
    ask about megastrol, for sure. That's how my list got started.

  5. MiddleAgedLady says

    Y'all are funny! Now I have one more hesitation about starting a blog — my weight is just fine where it is!

  6. Then I'd suggest blogging with a smart phone or iPad while on the treadmill.

  7. I'm so glad that you made the decision to blog about CF Jesse!! You have a GREAT attitude and stay “real” about the situation and how you're feeling about it. There can never be enough of that in the CF community.

    Thank you for all that you do.

  8. No, thank YOU! Who knows what the future holds for us CF bloggers – the sky
    is the limit, man! Heck, you're a married homeowner now, too.

  9. Well I am sure glad you are blogging because people like you and Ronnie give hope to this CF momma…blogging helps me to stay positive as well and it is great for me to read about men with CF and share your stories with my little man. Keep it up!

  10. Thanks for the encouragement, Kristi!

  11. Great blog, and very inspiring ๐Ÿ™‚

  12. Thanks, Jess! There's a cornucopia of Jesses, Jess's, Jessies, Jessicas
    around the CF community, eh? I think you're a new one to me, so “hi!”

  13. Hello to you too! I'm another CF Jess ๐Ÿ™‚
    I have a blog too….

  14. Oh, I am so all over your blog now that I've seen Couch to 5K
    – because I want to run the 5K in January at Gasparilla in Tampa. You'll be
    seeing some comments from me tonight.

  15. Awesome! I've done 2 5K's, and am looking for my 3rd. I love to RUN, even thinking about doing a triathalon..yikes! I'll make sure I follow your blog now! Great meeting you

  16. I'm glad you have this site. I think every freelancer and work at home-er's needs to have that personal outlet and what better way to do it with what we do best, eh?

  17. If I were a Pooh, I'd be eating honey right now.