2016: What goes down, might come up

2016 is a big dog dragging me toward 2017. I’ll explain in a minute. First, some backstory.

The year didn’t start well. January, February and March, my arch-nemesis months, delivered days ripe with fresh/nasty viruses, leading to two separate hospital stays.  Bad hospital stays. Both were filled with fevers, chills, severe SOB, and raging headaches. I ate Tylenol and yogurt and worked each day, barely, waiting for my late afternoon crash and burn facedown on the plastic bed.

I spent 24 days in the hospital and 12 days on home IVs over the course of two stays, leaving with my lowest lung function and O2 readings ever. And a bloody nose from sinus surgery as a bonus.

I left the hospital sniffing O2 24/7. The CF Clinic called it a “milestone” stay, but not in a good way like you’ve reached something great in your life. I learned that milestones can work backwards, in a bad way, in the medical community. I like them the other way.

So I wore oxygen in public for the time. Me no likey. I hated it. One website compared it to any other physical limitation, like wearing a knee brace. Sorry, I didn’t see it that way and still don’t. The oxygen cannula lives on your face, for everyone to see. It’s hard to hide if you don’t want to talk about it.

I didn’t accept this O2 milestone as fact. I got lucky. I have to thank a wonderful member of the CF Clinic team for giving the right tool for the job of getting off oxygen. She gave me an Aerobika. I started using it for 3 hours a day, and the poisonous oyster scum rose from the depths of my lungs and I got better. Slowly, but better.

(The Aerobika reminds me of the Flutter, but is easier to use, and works during treatments, a real bonus of doubling up on time. End of Aerobika commercial.)

Skip ahead to July.

IMG_2298

We went island hopping. This is Salt Spring island with Vancouver Island in the distance.

My family and I went to Vancouver Island for 9 days and had the greatest vacation ever. Forests, ocean water, jellyfish, ferry rides, deer, snakes, one raccoon, sheep, crabs, birds and awe-inspiring dinners every night in Victoria . And high-tea at The Empress Hotel.

I felt great. I climbed city streets, stairs, hills. I went paddle boarding and zip lining. All with no to little shortness of breath.

A miracle. I’m grateful. As if I needed more proof I’m the luckiest guy in the world.

I flew on a plane with no issues, though I have to use O2 now.

Which brings me back to that big dog dragging me to 2017. I’m one bad hospital stay away from needing O2 24/7 again, perhaps permanently. It’s coming. It is. Something oxygen this way comes.

I’m milking every day and every moment until then. Summer can’t go slow enough because I know “winter is coming.” And somewhere out there is a virus waiting, lurking, ready to etch its name into my lungs.

It will happen. I’m not looking forward to it. I can’t slow the damn clock. It’s such a strange feeling knowing that beating is on the way and knowing there isn’t anything I can do to avoid it. I just have to make it through whatever happens because who knows what next summer will bring. Perhaps, something magical like this summer. I can hope.

 

Why I stopped blogging at the end of 2014

Superstition. That’s the one word answer. And my fear of breaking a winning streak of no CF hospital stays in 2014.

Every time I’ve been doing well in the past and gone to my blog to write it about it, the Universe has struck me down. A day later I’m coughing up blood or I get the flu and off to the hospital I go. Bang. Lighting strike because I tempted the gods of hospital stays or something.

So, like a pitcher pitching a no-hitter, I stayed quiet about the streak as the end of the year neared. No talking about my good luck, which is the first calendar year I’ve gone without IV antibiotics in . . . well, I don’t know how many years. 10 or more? Usually I’m in two or three times a year.

But not in 2014. With the exception of an overnight visit for a hernia repair, I did not see the inside of a hospital room. No CF exotic-animals floor for me in 2014.

I look back on the year in disbelief. Did that really happen? How?

Luck. And a lot of antibacterial hand gel. But mostly luck. Though I have to thank my treadmill desk and the six Chobani yogurts a day I eat. They get the assist.

So to my new pal, Luck, I thank you for a year away from IVs, nurses, doctors, RTs, X-rays, blood draws, and the general misery of being locked up in a hospital for weeks at a time.

Thank you, Luck, thank you. I’m grateful.

One month at my new job and the results are . . .

1) A lot less email each day to deal with. This was an unexpected bonus.

2) Fewer hurdles to jump through to get work done. This killed me at my old job. Swimming up a waterfall is what it felt like to move projects forward. How many people does it take to make one decision?

3) Great people who are creative, talented and hard-working. This is similar to my old job. I did work with great people. It was the myriad processes that made it hard.

4) More time spent on work that matters = more writing of curriculum, research and proposals. No more constant rewriting of, and agonizing over, PowerPoints for the president to use one time. We called it disposable work. Or, writing on toilet paper.

5) Fewer processes, which is good and bad. There is no on-boarding manual at my new job. No roadmap or thick book of “rules not to trip over.” No one-day new hire workshop. Luckily, I feel comfortable figuring out stuff on my own. Otherwise, I would have been hosed.

So, that’s life at my new career. It doesn’t mean it’s been frustration free. Every new job comes with challenges, but I’m glad I made the move.

I haven’t blogged because I worked every day for the first three weeks to make a good first impression. But I enjoyed it. That was the best part.

I’m more engaged and the effort I give feels like it matters more. Whereas at the corporation, constant turnover at the management level meant starting over often and the complete destruction of past successes and sacrifices. Here, I think it will be different.

On the downside, my medical costs will be higher, but it seems like a small price to pay for a happier work life.

So far, so good. Luck is on my side. Knock on wood (I’m tapping on my head right now).

Major change is almost here

I had my exit interview with HR today. I wish I could bottle up all the great things the wonderful woman said about my time at the company, especially that I’m welcome back anytime. It was a nice way to exit, but emotional. And it made me question my decision to leave.

But leave I must. And change I need. And growth in my profession.

Maybe I will return one day. I’ll be better and more knowledgeable if I do.

So, two more days to go.

I plan on starting my new job on Thursday, which I didn’t think was odd, but others have asked why I’m not taking time off. It’s not because I’m the super employee. I’m just excited to get started and to prove myself as soon as possible.

I’ll probably have to get Cobra for a month. If I don’t there could be a period of 5 to 6 days where I don’t have insurance. Hmm, in the worst season for me, Autumn, would I want to be uninsured? I think not. I can guarantee that would be the week I go to the hospital.

To be continued . . .

Pure luckiness

Recently, while backing up in a parking lot, my foot hit the brake and the accelerator at the same time. My SUV lurched backwards quickly before I could step on just the brake. Luckily, no one was walking in back of me and I turned the steering wheel enough to miss the cars in the row behind. I was more worried about hitting people.

Luck. 

I wish my luck tranferred to Vegas and the Lotto.  © Maksym Yemelyanov - Fotolia.com

I wish my luck tranferred to Vegas and the Lotto.
© Maksym Yemelyanov – Fotolia.com

It’s an uncomfortable feeling to look back on that event even though no one was hurt. The mental nausea of the moment overpowers, forcing me to think about something else.

What if there had been people there? How would my life have changed because of that mistake?

Sometimes near-misses from my past gang up on me, and I am forced to remember how lucky I am to be here, alive.

A heaping mug of gratefulness I gulp from.

I have a wonderful, brave and caring wife. A fantastic and intelligent daughter. A house. Two dogs. A job that allows me to work from home, knock on wood. A stocked refrigerator. Friends in person and online.

Clearly, I am living proof that life isn’t fair if I got this much.

Oh, there’s the cystic fibrosis. Yeah, that’s been, well, not good. No doubt. But I inherited a variation of it that’s allowed to me have everything and more in life. I have no right to complain about CF* – or anything else.

That’s it. Clearly today, I’m feeling pretty lucky and grateful to the Universe that bestowed it on me.

I know all of my good fortune could change from this point forward. However, looking back on my life, there’s no arguing that I’ve been a very lucky man.

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*I reserve the right to complain during hospital stays.

One year of using a treadmill desk

I rotate through shoes each day. So far, they've lasted a long time. Walk, walk, walk.

I rotate through shoes each day. So far, they’ve lasted a long time. Walk, walk, walk.

Here’s the fact I like most about the past 12 months of walking 50 to 70 miles a week while working: One hospitalization.

Yep. In years past, that number would be two or three hospital stays in a 12-month period. And the only reason for the last visit in November was because I caught the virus from hell.

Luck? Perhaps. But isn’t luck something we make ourselves?

There’s no doubt my conditioning is much better. I don’t get tired when we’re out and I walk a long distance. I can stand while others with normal health sit. I can stand all day now.

(Knock on wood to all of this, as life has a way of punishing me when I write good things here. I’ll risk it.)

So, in the last 12+ months, I estimate I’ve walked across the country – 2,500 miles or more. I average 10 to 14 miles a day, and 50 to 60 a week. Sometimes more than 70. My record for one day is 18 miles.

Total steps in the last year: I’m in the millions. I wish that total was in dollars.

I do my treatments while I walk. I eat M&Ms Minis while I walk. I eat and spill yogurt while I walk. I’m writing this post while I’m walking. And so far I’ve done all of these without wiping out, though I’ve had close calls.

The one downside created by the miles is planter fasciitis. The reality: my feet hurt. It’s hard to walk barefooted now. But it’s been worth the benefits to my lungs and the endurance I’ve gained in my legs.

I’ve lost about 10 pounds, a lot of it around my gut. And I’ve done it without eating less.

I’m grateful I read the New Yorker article a year ago and learned about walking on a treadmill while working. It had never occurred to me that there was an alternative to sitting all day at a computer. Lucky me, I say. Lucky me.

 

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.