On the Road with My Pal, cystic fibrosis

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.

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11 thoughts on “On the Road with My Pal, cystic fibrosis

  1. I think we’re all icebergs….whether co-workers, friends, family….you only let people see what you want them to see….thats just human nature, i guess. Oh you have more tact than you give yourself credit for….I dont know that I could have kept my mouth shut, so props to you 😉 my best always ~j

    • Hey, you,

      Yes, we are. Thank you for thinking I have tact. I have to walk such a fine line at work. It’s politically correct land where you make one misstep and you’re toast. Now that I have a blog, I don’t have to keep my mouth shut. I just have to wait a few days to vent.

      My best to you and the kids.

      UC

  2. as a totally pragmatic aside, instead of finding a hotel with a stove, if you can simply get one with a microwave (tends to be easier, I think) you can use the baby bottle sterilizer *microwave bags* instead – takes ❤ minutes, each can be reused up to 20 times, and the bags take up less room than your daughter's ipa…er, your ipad :o) Recent and life-changing discovery

    -Chronicuriosity/Breathsentence/Jessica

    • Jessica,

      I always appreciate the tips. I’m germ phobic, so I always look for the way to overkill the bugs. I do have a portable baby bottle sterilizer that I use when the hotel doesn’t have a stove. I’ll check out the microwave bags. Thanks again for that tip.

      I miss my iPad. She tells me it’s cool.

      UC

  3. That’s a great idea, Jessica. I might try that next time I travel.

    The CF work boundaries are very hard to deal with. If you tell everyone, then they hesitate to give you opportunites and become overly concerned even though they deny it up an down. If you don’t say much, it’s really hard to deal with questions and comments. Damned if you do, damned if you don’t.

    I admire your dedication even when you are tired on many levels.

  4. I have always felt sorry that guys can’t wear make-up camouflage/concealer like women can. (Well, I guess you could but that opens up a whole ‘nother issue.)

    The Lancome camo doesn’t always work… sometimes ‘tired-looking’ is just that. I’m convinced most people mean well. They are just clunky in knowing how to go about expressing it!

    I know I sound like a mom, but please don’t push yourself too hard! I did that, and I didn’t spring back to baseline like I always had before. Just saying.

    • MAL,

      I may have to start wearing that stuff. My fear would be that everyone would start saying “are you wearing make-up?” It’s a no-win situation. 🙂

      I know they mean well. 🙂 When I’m running on five hours of sleep and cranky trying to get my work done, it bothers me. I’ve heard it so many times, including “did you get in a fight, you look like you have a black eye.” It just wears on me sometimes.

      You’re right about work. It’s already cost me a huge chunk of my lung function. It’s a story I’ve yet to write.

      As always, I appreciate the visit and comment. Hope you’re well and having fun.

      UC

  5. Your posts are always inspirational. Traveling is in my blood. I just got back from my first trip alone to Philadelphia, Pennsylvania a few days ago. It was a gift to myself from finally getting out of the hospital and being healthy for the first time in months. CF always lurks below the surface and tends to bob for breath every so often.
    I will not let get CF hold my head under water. I want to travel to many different countries for weeks at a time. It’s my passion. It’s also taking me forever to get my college degree and I’ve taken a year off. But, I’ll be damned if I don’t follow my heart. I know I won’t conquer the beast, but it can be tamed and walked with.
    I really want to make it easier for CFers to travel. I don’t know what this ensues yet, but I want to make it happen. Thanks for feeding my fire a bit Unknown. Your words are wonderful.
    I also thought that you out of all people could use this quote. I hold onto it dearly- ““You’re only given a little spark of madness. You mustn’t lose it.”
    -Robin Williams
    May we never lose our upside down crazy.

    • Savannah,

      I’m bit speechless, which is rare for me, by your comment. I’m not sure I’d use the “I” word about anything I’ve written, but I’m never one to turn down such a nice compliment, if you’re serous and haven’t lost your mind, which is what I’m thinking happened. But if you did lose your mind, then you’ve found the right place to hang out.

      I like your attitude about CF.

      It took me awhile to get my degree, but it was the best decision I ever made and I’m very proud that I did. I hope you continue on that path, after your break, if that will make you happy.

      I’m a bit of a pyro, so I like feeding the fire.

      I can’t wait to see what you come up with for making travel easier for us. I’d love to read that.

      I REALLY DIG the quote. Thanks for sharing it. Ah, you dug the upside down crazy bag thing. I like you. I like you a lot. You understand.

      UC

    • Thank you. I thought you might enjoy that one. I love the cool design of their bag. Read on the Internet that some thing it has subliminal messages on it. I’m not sure a big “crazy” is subliminal.

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