I fly again, and live to blog about it

I can’t remember how long it’s been since I was on an airplane. 3 or 4 years? Last week, I left the state for the first time since we drove to Las Vegas. And it went smoothly. Too smoothly, as if the air-travel gods were luring me back to the sky.

It did help that I took an Ativan before leaving for the airport. But security was a breeze, though I did receive the usual X-ray rescan of my compressor and cold pack for my Cayston. Snowpiercer and the sequel to 300 kept my mind occupied on the flight, and I touched down in New Jersey ahead of schedule. Too smooth.

The rented O2 concentrator was at the hotel when I arrived. Smooth.

This is the O2 Concentrator to own. It's quiet as a fan and doesn't weigh as much as bulkier units. I'm looking into swapping my noisy home unit for one of these.

This is the O2 Concentrator to own. It’s quiet as a fan and doesn’t weigh as much as bulkier units. I’m looking into swapping my noisy home unit for one of these.

After a brutal week of intense 12-hour days of work launching our training event, and an episode of A fib one stressful morning, I flew home. Okay, so the A fib wasn’t very fun, but I know how to deal with it now. I told everyone I was car sick and waited for the double Ativan dose to kick in.

With the exception of some blood on the day following my return, I’ve been okay, knock on wood. I wonder if the blood had anything to do with my falling asleep on the plane and possibly destatting? Question for my doctor.

Though I didn’t cough up blood on the flight, or at my destination, I have no interest in getting on a plane anytime soon. I still hate the whole process of flying. And I only flew this time because it was summer. Flying in the winter? No thanks.

But at least this time I made it back without any stories of hospitals. That, my friends, is cause for celebration.



Packing Day

I miss the days when packing for a trip took 45 minutes, not all day, and didn’t feel like defusing a bomb, hoping not to leave anything critical behind. I did exactly that in Hawaii a few years ago when I showed up without eFlow nebs. I felt ill when I realized they were sitting on the counter back home. And our trip budget took a hit with overnight plane delivery on a Sunday. (Yes, chocolate-covered macadamia nuts can sustain you for a week, but you’ll never eat them again.)

Count 'em out, ride 'em in, Ride 'em in, count 'em out, Count 'em out, ride 'em in, Rawhide!

There are a lot of meds and devices to keep track of, and it’s taking all afternoon to round them up and triple check them.

We’re officially on East Coast Time now in my house. Dinner will be at 4:30 PDT today. Bed by nine or ten, not midnight. Transportation will be here at 4:45 a.m. I have to wake up at 3:30 a.m PDT and do meds.

I started cipro today. No streaks, but I’m not taking any chances. I decided to fire the gun at the enemy first and not wait for it to surprise me – yes, I could be President one day with that preemptive skill.

Theme of the day: Travel light. I bought a new, smaller suitcase at Target, and I removed all ballast from my backpack: coins; old receipts; individually packaged hospital meds I never took; and limited clothing.

Part of my green initiative is wearing the same clothes for a longer period of time before changing and washing them. I wear the same T-shirt, shorts and underwear all week. Remember, I can go three weeks in the hospital without showering. So, wearing the same clothes for seven days . . . piece of cake. The world can thank me in a few years for all the detergent I saved from the ocean, and the energy to run the washing machine and dryer. Just don’t sit next to me on day six.

I fly to AZ first. I chose the close layover so if something bad happens on the plane, I can drive home or go to a hospital there. I’m comfortable with Phoenix and know my way around. It’s also not far if my wife has to travel to see me.

With luck, my next post will be from a hotel in NJ, which is what we once code named the hospital when my daughter was young. “Daddy’s in New Jersey for a week.” Now, it’s where I’m really going, though given the choice today, I might choose the local hospital. At least I don’t need to board a plane to get there.

Work Dinner at Benihana

I hope I can catch the shrimp in my mouth this time

Is there a name for that phobia?

I fear hibachi-style restaurants.

A few years ago, at a fake Benihana in the southern United States, the chef, who was showing off his mad skills with a spatula and shrimp, forever killed my love of sitting in front of a hot flaming grill while eating.

My work pals lied that it was my birthday, laughing as if they were the first group to ever pull this prank. So, I had to sit there sporting a paper idiot-hat while they sang Happy Birthday and toasted me. Happy, happy, joy, joy.

And, as I was the faux birthday boy, the chef had the genius idea to toss me a shrimp to catch in my mouth. Unfortunately, I had missed the memo about it.

When I noticed the grilled shrimp coming at me, I opened my mouth like a SeaWorld dolphin but couldn’t maneuver in time to avoid it hitting me in smack in the eye, which led to everyone laughing their asses off. Oh, funny man, make us laugh, please. Let’s see that again. I didn’t laugh very much when I spent 10 minutes washing the grease out of my eye. Fun times don’t come better than that.

That’s why I hate these ##$*@ places. They bring back bad memories of the “shrimp to the eye” night.

So, last week, when the gang told me the work dinner was at Benihana, I just couldn’t wait to go. Sarcasm alert, if you didn’t get it.

With Benihana being the restaurant choice for the night, someone’s memory flashed on the “shrimp incident.” Then the jokes started rolling my way around noon and continued through dinner. At one point, a pair of safety goggles showed up to protect my eyes from another mad shrimp. Thank you for your thoughtfulness, guys. I’m so lucky.

Light, damn it, light. Oh, screw it. I'm retiring.

Retire before you suck at what you do

At the restaurant, we got the worst teppanyaki chef ever, an ancient bench warmer they called into action when no one proficient at their job could be found. The crusty geezer was counting down the days to the cashing-in of his Benihana 401K and “free fried rice for life” coupon.

This is how much he sucked: He couldn’t flip a shrimp tail into his hat, which is a basic skill they teach you on day one of teppanyaki-chef school. He missed six in a row and gave up. Six? How do you miss six? I could make that shot in six tries. How hard can it be? Evidently, harder than it looks, as was the behind-the-back shot that hit the floor. You’re 0 for 7, loser.

Worst of all, he completely screwed the pooch on my favorite part of the show, the flaming-onion volcano. How do you mess that up? There are only three ingredients: onion, flammable liquid, and a lighter. A six-year-old could torch that baby. Somehow his onion didn’t ignite, much like his passion for the job.

I looked at this cat and wished that CG would get her new lungs soon

Free Drinks on the company

It’s amazing how much some people drink at company functions. It feels like it’s the people who have been in the same position for 30 years and have never moved up. Is it the chicken or the egg? You got drunk at company functions and didn’t get promoted, or you got drunk at company functions because you didn’t get promoted?

One such person, who exceeded his limit, slurred that he was cutting out carbs to reduce calories. When I told him alcohol has more calories per gram than carbs, he mumbled something about not giving up the one thing he enjoyed and turned his back to me. I admit that eating meat and drinking beer sounded like a good strategy regardless of his poor knowledge of caloric intake.

This same guy turned to me later, after he’d forgiven me for my rude remark, and shared this depressing fact: he felt really bad because he’s been attending a lot of funerals lately. Five people he’d known had died in last two months.

You know what I was thinking: I need to get away from this guy right now. I don’t want to be number six. I made sure I didn’t rub up against him. Back luck rising. I started to worry that the chef might lose control of a knife at any moment and I’d look down to see it stuck in my chest. That would be . . . ironic? I survive 47 years of CF and meet my maker at a teppanyaki grill where I’m killed by a guy who can’t make a flaming volcano? I know what my British friends would say: F#*king hell.

When someone finally drove the carb counter home, I yelled out “seat-belts,” and got a funny look back like I was the drunk one. I just didn’t want the driver to be number six.

I was so happy when I left and survived the night. I will do my best to avoid these places in the future. I’ll use the “I’m sick” excuse. No one at work will argue with that one.

Stay safe.

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.