When I started this blog, my goal was to be as frank as possible. To lay it all out, take risks, and leave a record for my family and those who are kind enough to read it. Though it’s challenging to judge for myself how I did, I do think I came close – with an asterisk.
When year two came around, I knew I’d been holding back posts about thoughts that screw me on certain days, and have since I was 16. That’s because it’s hard to blog about cystic fibrosis and not take the whole of the community into mind and the toll the disease has taken on younger and better people than I. It doesn’t feel right to talk of certain feelings with these special individuals and families in mind, especially when I’m the luckiest of the lucky.
But that doesn’t make certain thoughts go away or not part of my life. Yes, I’m lucky to have so much. I think of that every day, but my mind still plays tricks on me. CF has taken its toll on me over the years – the hospitalizations, the fear, the number of times I have coughed up blood. These events have damaged my brain wiring.
I think about escaping sometimes. Luckily for me, I have not chosen this path, as I don’t like pain, though I have a tolerance for it in the hospital. But I do live with the warped thinking. It would be disingenuous for me not to mention these thoughts occasionally. I’m hoping that by doing so I can reduce their power. That’s my hope. We’ll see. Feel free to skip these posts. I can tell you that the post that follows will usually be happier, or angrier in a fox-like way.
Sometimes, I fall off the Happy Positive-Thoughts Wagon and it takes me a day to get back on. But I do get back on.
Stay sane and patient, please.
The Unknown Cystic 
While I worry about you when you down/cranky, I actually love reading your brutally honest posts where you illustrate how you sometimes feel like your on the edge of disaster. #1 – It makes me feel more sane for having the same challenges. #2 – It’s a very real and raw part of having CF. #3 – I sometimes think the “no excuses/positive all the time/you should feel nothing but happy” crowd have their heads up their asses…so it’s nice to see the other side of the spectrum. Hugs from Cleve-fucking-land!
Stacey,
What’s up with the language? Don’t you know this is a G-rated site? 🙂 I can’t write that with a straight face. De-fucking-troit works much better than Cleve-fucking-land. Plus, Cleveland has the Rock and Roll Hall of Fame, which just might get me on a plane one day. It’s on my bucket list. If we ever meet, can you promise to wear the cat whiskers? 🙂 Oh, and what were the drugs you were taking in the hospital video? Take some of those too, please.
I would love to be on the other side of dealing with this disease. I’m happy for anyone who has that internal drive to handle it that way. Maybe I used to be that way a long time ago, but CF has beat it out of me over the years. I see what my life would be without it and I like the way it looks. I’d like not to have to check every cough of sputum for blood when it comes out of my mouth. I can’t put a happy face on doing that for all these years. And I hate the disease for what it does to everyone who has it and the children it’s killed. The only silver lining has been meeting the highest caliber of people who are fighting it or parents or others involved in some way. It makes me believe there is some good in humanity.
BTW, will you be posting soon? I hope that means you’re feeling well and too busy to write.
UC
I think your potty mouth is rubbing off on me! Actually, I just feel like saying Fuck a lot lately. I started traveling for work again last week and it SUCKED. I think I’m going to post about my day of travel hell. It’s taken me days to recover and now I have a lovely sinus infection. I’m contemplating if I can do this anymore. I have 3 business trips in the next month and a half and I just don’t know how I’m going to make my body do it. So I really get the travel thing, and it pissed me off.
PLEASE let me know if you come to Cleveland! We’ll get together and I won’t even be embarrased that you’re wearing a bag over your head. I’ll wear my whiskers and take a few Xanax just for you!
Stacey,
I stopped breathing when I read your last line. I’m heading to the ER now. And that’s all I’m gonna say about that.
Get yourself a Neilmed sinus rinse asap and travel with it. It’s the bomb for wiping out the gunk from sinuses. Rinse, rinse. Just the packing up of meds for travel is a drag. And you’re right about how much it takes out of you. I used to feel great, then I’d take a week-long business trip and feel like crap when I got back. Do what’s best for your health in the long-run.
UC
Just sending a smile 🙂
Smile received and one sent back to you. Thank you.