My obese brain

If you’ve read my whiny posts recently, you know I’ve been trying to solve some challenges at work, and that I’m feeling like I’ve lost my equilibrium. Well, I can tell you I’ve discovered one reason for the mental speed bumps: I’ve been spending way too much time drifting on the web, reading article after article on any and all subjects. Especially ones about trump and the election, which I’m still amazed by.

I’ve concluded that part of my recent frustrations stem from my inability to concentrate for extended periods. I don’t blog as much as I once did, and I don’t read as many books. I tend to spend a lot of time on the internet visiting the same sites over and over, checking them multiple times each hour.

While watching TV with the family, I find myself picking up my phone to check twitter or Instagram. Or reading my email. I never used to do any of that.

To combat this problem, I’ve created new family rules. No phones at the dinner table, which is really my wife’s rule, but my daughter and I tended to push the limits of it. No longer. Now we follow it.

And no more phones or computers if we’re watching a movie or television show. We concentrate on one thing at a time now. I noticed my daughter not paying attention to movies and it drove me nuts. Then I started picking up my phone too. (Sound of a screeching halt). The new rule is if you want to use your phone or computer: you leave the room.

So if I’m having a problem like this, how are electronic “distractions” impacting my daughter? I worry about her consuming more than she creates. The phone rarely leaves her hand and is always close by if it does. It’s an electronic clutch and crutch.

It’s not easy to break a habit like this, and I’m an adult (at least in age). I find myself going a day or two without excessive surfing but then falling back when I’m bored or tired. Or while doing my 4.5 hours of treatments each day.

My last thought-and I have no proof of this, it’s just a hunch – is that my surfing large amounts of negative news stories takes a its toll beyond my poor concentration. My gut tells me it extracts a greater price: anxiety, depression and hopelessness. Yay, a triple scoop of hell.

Maybe there is such a thing as too much knowledge in this day and age. I’m thinking it’s time for my brain to go on a diet, especially with four years of a rich oaf leading our country on the way.


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.