Work change is coming

I was in an informal interview this week and out of nowhere the person I was interviewing with asked: “What’s your dream job?”

I was caught off guard. WTF. Where did that cookie-cutter of a question come from? We were chatting casually and “boom,” serious question. I didn’t see it coming.

My first thought: Something with dogs, which would be the worst answer since the company I was interviewing with has nothing to do with dogs, other than allowing them in their office, which is very cool. I’d like to open my own dog training center. Doubt that’s going to happen.

I spit out something awkward about working in a team environment, which is true. I’m not working in one now. That’s making me depressed. I don’t like working in a “hero” culture, thinking more about office politics than what project I’m going to write. Nope, that’s not the right environment for me. Maybe when I was young, but not now.

I spent two hours in the interview. The woman leading it was very nice and fun and, according to my friend who works for her, a great person to work for. Next step: meeting the VP.

Now, all of that was the easy part. Thinking about what happens if I make it through the interview process is the hard part. That’s thanks to CF.

What do I say about not being able to travel very often, never overseas, or in the winter? Working out of the hospital? How do I explain a hospital visit? Insurance? Hmm. Sounds simpler on paper, but in my head it’s a hurricane of fear and anxiety.

In a perfect world, I’d have my own business. The challenge is getting healthcare, of course, thanks to my preexisting condition. Health insurance is rigged so you have to stay with a company to get it. It shouldn’t be that way. But that’s a rant for another day. In the meantime, change is definitely on the way.

Still alive and kicking

It’s been a long time since I posted. I’m not sure why.

Here’s what I’ve been doing.

  1. Competing in scentwork trials with my golden retriever (he’s awesome)
  2. Watching lots of TV shows and movies and escaping reality
  3. Missing my prostate, which was removed by a robot because it was full of cancer (well, a doctor used a robot to cut it out)
  4. Feeling depressed, which has fortunately gone away
  5. Working and feeling frustrated with the lack of control I have over my job, which is a result of having cystic fibrosis and not being able to build a normal career
  6. Fighting infections and suffering a lot during them. Glad I’m getting older, but it doesn’t make exacerbations easier. They’re getting way more painful. Not sure why
  7. Dreaming of doing something else with my life but not having the courage or knowledge of where to start
  8. Helping my wife and daughter raise money for cystic fibrosis research
  9. Getting stressed with having a President who’s not very bright and a tax cheat (I’m in a good place now and don’t read as much about him)
  10. Doing my treatments three times a day, every day, and trying to decode life at the same time

My last dog?

We have a new dog. A golden retriever. And it’s with a touch of guilt that I write this post to mention it. After Merlin, our shepherd mix, passed away, I looked at adopting again. I started the search process, but grew frustrated and impatient with it. Here in Los Angeles, there are thousands of dogs to choose from. Very sad. It’s overwhelming, and makes you wonder how it’s possible that all of these dogs need homes. Humans, hmm.

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Happy Griff 

I had something else to consider regarding which dog to get: my time is running out. I don’t feel comfortable believing I have loads of days ahead of me thanks to cystic fibrosis and my current health and age. Again, I’m the luckiest guy in the world. But I’m not going to count on that luck holding out forever. One bad virus or infection and who knows.

So, I made an executive decision and chose a predictable dog breed that I’ve always loved, and one that would be great for my daughter and wife, especially in the long run if I’m not around. They love cuddly, friendly dogs. And we couldn’t get another yellow lab because we already had the greatest one ever.

Enter Griffin, or Griff. Or when he steals stuff, Grifter.

He’s 34 pounds of pure fluff and fun, and working on growing into his paws, which look really big right now.

The best news: the reality of having him is better than the dream. He’s a little gem and exactly what I wanted. He’s smart and learns fast. And he’s full of mischief at times, but calm in nature. And he is friendly when meeting people and other dogs.

He draws a crowd in public. It’s like escorting a celebrity around town: “Sorry, folks, Mr. Griff has to leave. He has a meeting at the studio for Air Bud 10. You’ll be seeing him soon on the big screen.”

If you’d like to check out our future grooming headache, I created an Instagram account for him. @GoldenFluffalo.

Griff has already delivered a ton of joy and smiles to our lives. And my crazy dream is to certify him as a therapy dog and have him live with me during hospital stays. It sure would make them easier to survive. I know it’s a crazy idea, but I like thinking of him hanging out in the room.

I’ll train him to pull my IV pole on walks, retrieve my meds from the nurses, and growl at the RTs I don’t care for.

It’s nice when life gives us these little gems to get us through the hard days. I’m forever grateful.

 

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.

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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 . . .