I know I’m lucky. The luckiest of the lucky. I see the sand hitting the bottom of the hour glass each day. However, right now, my luck and sense of time feel like a heavy weight crushing me. The frustration I have with my life is wanting to do more with it. Work isn’t going well, as I wrote about in my previous post. And that’s a big part of my mental woes. But it’s more than that.

I have this gift of time and I’m not sure how to make it count, to maximize each minute.

I read an article on happiness and it said that sometimes the pressure of feeling like you have to be happy causes unhappiness. I’m not unhappy. I’m frustrated. Most with CF don’t get what I have. So, perhaps, like happiness, the pressure to make the most of every minute is causing me to be irritated with the time I have and the feeling I’m not doing enough with it.

And then there is trump. Wow. Life makes less sense now than it ever has.




From hero to zero

[I may be the luckiest guy in the world, but even I have moments when I can’t figure out how to get out of a maze. That’s what this post is: my way of looking for an exit.]

For the past two years, my new job has been rough on my ego. More like, crushed what little I have of one. I had planned on being higher up in the food chain when I was hired, with more say over the direction of the company and my own path – a righthand man to the VP.  Ah, but he went and got himself canned the day before I started. Nice, as he was the reason I joined.

Luckily the new company still wanted me. And I’ve treated the last two years as a learning experience with a certain quote ringing round in my empty head: You’re not who you think you are, you’re who others think you are. 

Oh, how I’ve learned that lesson – and many others.

A headstrong group of individuals on the team is a chummy bunch and blocks others from being part of important decisions. It’s a fan club of 3 using the Hollywood style of complimenting each other (you’re great; no, you’re greater). I’m living a life of exile thanks to this inexperienced trio, which ironically I was supposed to have some creative control over.

The deepest cut happened when a replacement manager, who is a pal of the threesome, joined, reinforcing my downward trajectory from hero to zero. If there is a silver lining, I’m not alone in my frustration with the Hollywood 3 or the new manager and his weak management style. But as good as it feels to know others suffer too, it doesn’t grant me input and influence in projects.

I’m shooting to live at least another 3.5 years to see my daughter graduate from high school. How I’m going to fill my time between now and then (other than time spent in the hospital and doctors’ offices) is the question that haunts me.

It’s impossible not to ask: What if?

What if I didn’t have cystic fibrosis? This frigging nightmare disease cuts into every decision of my life. Some might just take it easy and collect a check. Or find another job, which isn’t easy to do with cf. I need to feel like I have value and I’m spending my time well. But it’s a heavy load when cf and others control my destiny and I can’t figure out how to move forward.

Isolation at home

One cold is all it takes to send me to the hospital these days. And when my daughter or my wife gets sick, it becomes a game of “stay away from daddy.” No hugs. No driving in the same car. We order take out. No eating at dinner table together. No touching cabinet handles or door knobs with a bare hand for me. My wife sleeps in a different room. The dogs pick sides at night, though they’re both rather sleep with my wife. Join the club, mutts. Join the club. What self-respecting Labrador would pass up a bed for a couch?

I’ve lived like this the past 10 days because my daughter caught a cold, then gifted it to my wife. Now I avoid both of them like we’re playing a game of tag and they’re it. I stay a minimum of 3 or 4 feet away and hope I don’t bump into a stray germ floating in the air, or stuck to a surface, waiting. It’s such an uncomfortable feeling to fight an enemy you can’t see. It creates a hyper-state of awareness in me-was that sneeze the first sign? Did that cough feel different? Am I feeling “off” today? Tick tock, tick tock.

So I wait.

How many times in the past have I thought, “I made it, I didn’t get” only to be fooled at the last minute?

I need someone to invent “germ-be-gone” glasses. They would include a powerful laser  to burn away bacteria and viruses. Now that would be awesome. Until then, I navigate the germ maze in my house and cross my fingers one of those little bastards isn’t going to latch on to me and send me to jail for two weeks. Tick tock.


How donald j. trump got under my skin

Rich people who whine. Can’t stand them, especially when can buy their way out of the worry of health insurance bills, keeping their job, or paying their rent or mortgage on time. Enter fat cat donald trump. Listening to him bitch and moan all the time and bully others strikes a nerve. And the path he’s taken to riches by gorging on gold McNuggets and the misfortunes of others, burns another.

I usually don’t spend time talking about politics, but trump is different. He is billionaire trash and needs to go back to his gold-covered tower in the sky.

This is a man who blatantly lies to and cheats others, like working-class Americans. He has no regard as to how he treats these small business people. And everything about him crosses a mental line for me. He’s not Bill Gates who has now devoted his life to making the world a better place, or Mark Zuckerberg who, with his wife, is going to help improve the lives of children across the USA, and perhaps the world. trump? His foundation is a zero-employee joke he borrows from for his own self-interest. Not cool.

I’ve lost track of how many tweets I’ve written about trump lately. I know they won’t change anyone’s mind about trump-that’s not their purpose. “Cathartic release” seems like a better way to describe them. They must spring forth to cleanse the disgust from my neural pathways: pseudomonas-infected thoughts brought to the surface and released.

I just can’t believe trump is the best the republican party has to offer this country. I can’t. I really can’t.


Winter is coming

Flu, colds, unnamed viruses, and hospital stays. Oxygen in public. The stress of working while hospitalized. Home IVs. Insurance deductibles and bills. Face down in bed with a fever. Shortness of breath. Lost lung function. Being uncomfortable. Telling people at work.

Yeah, winter is coming and I’m not happy about it. It’s not a matter of if I’ll go in the hospital, it’s a matter of when and how many times. And the pound of flesh it’s going to rip and claw from me.

If I had the money, I’d move my family to Australia when it’s winter in California.

Summers per year with this plan: 2

Winters: 0

Zero winters gives me goosebumps. How amazing that would be.

I wouldn’t mind winter as much if it stayed light each day until 8 p.m. I don’t like the lack of daylight. It piles on the misery when I don’t feel well, though I’m glad I don’t live Minnesota or Michigan, where snow clouds the ground and sub-zero temperatures ice your lungs. Not sure how other CFers do it.

So, winter is coming. Time to prepare mentally and combat it by enjoying every moment not spent in the hospital.




I have no shoes, but . . .

I’m going to misquote a quote. I apologize to the writer, but it’s a great quote and helps me get through the day. Its source is mysterious on the web.

This is my version, “I felt sorry for myself because I had no shoes until I met a man who had no feet.”

It sounds silly writing it now, but it works like mental Valium for me. Be calm, peaceful. Be grateful for what you have. Stop your sniveling

The quote exposes the rolling tide of my thinking. The pull of the real world I live in-and try to keep up with-pushing against my insider’s knowledge that it can all come crashing down in a single breath.

Worry. Don’t worry. Worry. Don’t worry. 

But there’s a third POV to the quote, one buried deep inside, that makes me think to ask the man with no feet if he has any shoes I can borrow since he’s not using them anymore. Yes, that’s horrible, I know. I’m sorry.

Buried in my nature is the person who asks that question, who does whatever it takes to keep going. I can’t help it. I blame the fox.


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.


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.