Friday, August 14, 2009

Why I don't blog about Cystic Fibrosis

Some of my readers might not even be aware that I have cystic fibrosis. I've only blogged about it once and I have virtually no motivation to write any more about it. Even when an interesting PLoS Biology paper released in July trumpeting a potential cure for mucus buildup in the lungs of CF patients, I didn't really bat an eye. Some of my readers might be curious as to why.

Truth is, I do my meds every day and cough and wheeze sometimes, but CF doesn't give me much trouble. I may be blessed with a minor case of the disease. I've known plenty of patients worse off than me at earlier ages who were stricter about their medications than I am, and they got sicker quicker and most of them died. Honestly, I do a pretty crappy job of keeping myself healthy: I don't always do my Albuterol before my Pulmozime and Tobi, I almost never do the Flutter, and there are meals where I simply space out and forget to take my pancreatic enzymes. Part of this is apathy, plain 'n' simple, but part of it is that I know I can get away with it. I feel like my CF has leveled off somewhat. My lung functions are good enough that my doctor doesn't even question me not doing the Flutter.

But I do wonder sometimes. If I did do the Flutter every day, and I did do Albuterol before my morning routine, would my lung functions improve? There's never a day where the CF makes me feel crappy. I can take long walks, hike up mountains with my wife, and hit the gym with my friends. I never feel out of breath because of the CF, and if I do, it's because I'm really out of shape. Because of that, I'm not terribly motivated to increase my level of commitment to more meds and therapies. But then in the back of my head right now, my doctor is giving me that old mantra: "the goal is to keep your lung functions high for as long as possible." And it's true, there are certain low points that CF patients can't come back from. Once you lose a certain amount of lung capacity, you can't recover all the way anymore.

But I don't talk about it on the blog. Part of it is that I don't percieve it as interesting (it certainly doesn't interest me), but I also don't want to come off as whiny or self-centered (more than I do already). I equate yapping about my terminal illness with goth kids reading their weepy poetry to people. Now, if something I think is AWESOME (or really terrible) happens, like getting an I.V. or starting an experimental drug, you'll probably hear about it. But I'm not going to be giving updates. I won't let ya'll know what my latest FEV-1 rate is because it's not interesting. Same situation with my back. Getting a cortisone injection is wierd and cool, and like Glendon and Sean commented, it provides information to other people who might get that procedure in the future. It's informative.

I'm just not that CF Guy, and I can't do the subject justice. There are plenty of other people who can, though, like Ronnie Sharpe. And he does, often, and in a very engaging way. Check his blog out, seriously. He's a cool cat.

As for me, I'd rather drone on and on about dinosaurs and video games. If you readers out there in Readerland have any questions, leave them in the comments and I'll answer them as best I can.


Ronnie "Sickboy" Sharpe said...

Thanks for the shout out my man! I'll make you a deal: You keep reading about CF on my blog and I'll keep reading about dinosaurs and video games on Seriously though, I'm grateful and humbled that you would mention me in representing the CF community. I just hope I can do all of you guys justice!


Gina said...

Hmm, I wonder if your good health has anything to do with your loving and diligent wife?

Anonymous said...

Ha! Great post! You are a lucky Sob... Not sure if you want other cfers to read this who diligently take care of themselves and still feel like shit. Regardless, glad u r well in Alaska.

Sean Craven said...

Hey, Zachary,

I've been meaning to comment on this for a while now and I've had trouble finding the words. Hope this isn't awkward.

I'm really glad to hear that your condition isn't as bad as it might be. I'd encourage you to be more diligent about your regimen -- when it comes to chronic health issues, any level of control you can take over the situation pays out exponentially over the long run.

But I can also understand how the desire to just get on with your life takes precedence sometimes.

And that's the other side of things. You're obviously a lot more interested in your identity as an artist, student of the sciences, and hobbyist than you are in being a CF sufferer. I can't help but feel that's a very healthy and intelligent reaction to your situation.

Life's a bitch, you know? But that's the benefit to having a popular blog. You've got a lot of good will out there, man. A lot of folks who want to see you thrive.

Keep on living, dude.

Amanda said...

So, anything you write about yourself is interesting to me. I mean, I love your blog and your dinosaurs and video games, but I am now also invested in you, the blogger. With that said, write about what you want. It's your blog!

But thanks for the update and info. It's stuff that I wonder about sometimes but don't wanna just outright ask about.

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