Fox taught me to get a hotel room with a stove for boiling nebs.
[Warning: adult language]
Four days on the road
Mush, you CF drugs, mush. Creative Commons - jurvetson
I used to love traveling on business, but now I haul so much CF stuff that it’s not very enjoyable. It feels like I load a dog-sled full of nebs and meds. And it takes a couple of hours to boil and pull everything together. Then I need to make sure I don’t forget anything, though I’m didn’t fly this time, which meant I could drive back, if needed. Still, I’d rather avoid that.
Thanks to my wife, I received a packed suitcase for my trip. She packs enough clothes for a three-week trek across Antarctica. I can change my underwear twice a day, which fortunately I don’t have to do.
I’m not complaining.
A stuffed suitcase is a great perk of being married. I just need to lighten the load before I leave next time. I did promise to bring her back a cute penguin, though there weren’t any at my real destination, Ontario California.
What you can see looks nice. Creative Commons: angelasevin
What do we really know about each other?
Sticking with the Antarctica theme, I’m an iceberg, as are my co-workers. Just like icebergs, we only know the 10% of each other that sticks out of the water. The other 90% remains hidden from view. The longer we work together, the more ice we see. But with me, there is always cystic fibrosis lurking below the waterline.
Only three trusted people at work know I have it. The rest have the impression I’m sick a lot, I don’t like to shake hands due to germs, and I don’t like to talk about being sick a lot. Pretty close, but I don’t think I’m sick a lot.
CF neuters me again
My manager asked me to travel overseas on company business, which I used to do all the time. I turned it down. I just couldn’t do it. I have hemoptysis screwing with me these days, and I already lived through a bloody gusher on a plane across the Atlantic once before. Plus, travel wears me out, which affects my health in bad ways. Not wanting to go through that again, I turned it down for health reasons, which was embarrassing and made me feel like less of a man.
A leak develops - Creative Commons: clearly ambiguous
There’s that CF iceberg again, dragging through the water, slightly more complex than other people’s. Still, I’m lucky, I know.
The joys of saying the wrong thing
A co-worker said to me, “you looked really tired in the meeting.” She made this simple comment three times, as if I didn’t hear it the first time. Why do people always have to comment on the way I look? And why is it always negative? Do you really need to point out circles under my eyes or other physical characteristics? “Gaunt” or “thin” used to derail me when I was younger. I’ve heard it so many times now, who cares. I should wear a bag over my head 24/7.
What they don’t know
What my pal didn’t know was that my mucus production quadrupled the day before, and I was awake until one in the morning coughing it all out. Then I had to get up at 6:15 a.m. – when my co-worker was sleeping – to do my xopenex, two hypertonic salines, and my flutter. Then, I had to get ready for work. All of this took close to two hours.
Who wouldn't want to dream of these?
So, when someone says you look tired to me, I feel like saying, fuck you very much. While you were dreaming of puppies playing, and snug in your Marriott bed, I was sitting in my bulldog-covered boxers coughing up a pile of the stickiest crap you’ve ever seen in your life. Would you like me to show what I coughed up?
When you don’t have anything nice to say, just STFU.
I was pretty tired on Tuesday. I had to grind out the workday. I hadn’t slept well or long; my upper back was killing me, an 8 on the pain scale. When I hurt it . . . I have no clue. Sharp back pains zapped me when I coughed. And my stomach bothered me all day. Overall, CF did a good job kicking my ass that day. I should have looked tired. But she had no idea why I did.
Zen and the art of keeping your mouth shut
Perfect bag for me. Note the upside down "crazy" on the bag. Awesome.
I had my own “foot in the mouth” incident when I said hello to someone I hadn’t seen in a long time and added: “I hear you’re kicking ass in your new position.” I meant it as, “I hear you’re doing really well.” I forgot she just fired one of the nicest people in the department, a woman who wasn’t a very good worker, but made days brighter. Thus, when I made my comment, she turned red from embarrassment.
I had to quickly explain what I meant. Too late, Mr. Tiny Verbal Dancer, damage delivered and done. I won the idiot of the day award, which goes on my shelf next to a hundred others that I’ve won at work. Yay, oh, yay, Communications Master, just STFU in the future.
I’m thinking of becoming a monk, the type who takes a vow of silence. The only problem is there’s still non-verbal communication. I’m sure one of my fellow monks would look at me, make a sad face, and then use his finger to trace imaginary half circles under his eyes, which is the monk-way of saying “you look tired.”
I, of course, would use non-verbal communication right back with my middle finger – the universal way of saying, just STFU.
Stay calm and quiet.