It’s one thing to say you’re living day by day, it’s another to do it

I had an epiphany the other day, but not in the religious sense. More of the, “I may be screwed if I don’t get moving” kind. As in:

  1. My lung function is decreasing.
  2. They want to test for mycobacteria, or MAC, which is something I’d rather not have – are you listening, Universe?
  3. Work defies logical explanation, other than to say I received my yearly review the other day, which was excellent, thankfully. However, I feel more like an administrative assistant to my supervisor and manager than the creative-idea generator and problem solver I’ve been for many years. But I have a job and benefits. That’s all anyone can ask these days. If mopping the floor is needed, I best do it with a smile on my face. 

Yes, I live in a Dali painting.

And yet, the other day, I truly came to peace with all of this and the stress and fear. I may be the luckiest person on the planet, but I know I am going to die one day. Perhaps soon? Hard to predict. But I’ve reached an age where I can’t let trivial bullshit bother me.

I've never been one to buy posters for inspiration, but I liked this one and ordered it during Christmas. I didn't get it just for me. I bought as a reminder for my daughter, who will see it in my office once I hang it. And it seems like a good omen for me now. Double win.

I’ve never been one to buy posters for inspiration, but I liked this one and ordered it during Christmas. I didn’t get it just for me. I bought as a reminder for my daughter, who will see it in my office once I hang it. And it seems like a good omen for me now. Double win.

Best of all, and this is hard to explain, but I’m feel like I’m truly living day-to-day right now. Not the type of “day-to-day” I lived when I was a teenager that meant “anything goes.” God knows, I’m paying the price for that now. No, this is more of a restrained, “working within the framework of my current life” type of experience.

I’m not going to quit my job.

I’m not going to stop taking my meds or doing my treatments.

I’m not going to blow our 401ks on a red Porsche 911 with a whale tail, tempting as it may sound.

However, I’m not going to worry about the future as much any more either. Perhaps that is the key difference this time, allowing me to gain the upper hand.

I believe that each day may truly be my last and that I’d better make it damn good. And so far, it’s working. They’ve all been good. And there’s a certain calm that comes with this new attitude.

Massage on Wednesday? Why not.

Spend 20 bucks at the flea market on the cute hand-painted bench that my daughter likes? No reason not to.

Part with stuff cluttering my garage and donate it to Goodwill? Absolutely.

The clock may be ticking, but so am I. At least today I am. And, despite the storm clouds in the distance, I’m feeling grateful for that simple gift.

Advertisements

Holiday in the south of Azithromycin

[No Z-packs were harmed in the writing of this post]

I get a holiday from Azithromycin for 30 days, which is kind of nice, as eliminating a med from the list feels good. Don’t I wish I could cut them all. How nice would that be? Especially if I could lose the 4.5 hours a day I spend on inhaled treatments.

Valentine's Day is going to be easy this year. My wife is getting something red, something small, something that comes in batches of 14, something with numbers on it.Any guesses?

Valentine’s Day is going to be easy this year. My wife is getting something red, something small, something that comes in batches of 14, something with numbers on it.
Any guesses?

For Halloween next year, I’m dressing in black and white stripes like a prisoner. And instead of a ball and chain around my ankle, I’m going to tie a bunch of nebulizers together and attach them to my ankle using old air hoses.

Prisoner of CF?

Okay, never mind. No one in my neighborhood would get the joke.

Okay, end of bitching.

Back to the Azithromycin topic, which I zagged away from.

Yes, I received an email from my CF clinic telling me to chill on the little red pills – 250mg a day for life. They want the drug to clear my system so they can test me for mycobacteria. They believe the Azithromycin might be suppressing the bacteria. Luckily I stopped the med during the hospital stay because it’s too much of a load on my system and makes the possibility of c diff more likely (for me, not medical advice for you), as I can just say “c diff” and get it.

So, I’m at day 13 in the 30-day “z-pack detox program.” Thursday I get my 15-day chip.

I hope I don’t have this new bacteria because knowing what I know about it from my friend Stacey, all I have to say is, “aaaaaaaaaarrrrrrrrrrrrggggggggggghhhhhhhh.” Women have the strength to fight this one. I’m toast.

Actually, I had to smile when I got the email. I thought of a quote I heard on Justified the other day: “Growing old ain’t for pussies.”

Nope, it ain’t. Thanks for that life lesson, Raylan Givens. Could have used it a bit sooner, my friend.

8 days of work, football, videos, crappy food, and IV antibiotics

I’m home after one of the least eventful hospital stays in a long time. Other than having to ask for a different nurse after the first one tanked a port-needle change, my prison days rolled by with minimal pain and little to talk to the doctors about, other than why my lung function has dropped and is not improving.

I know most people have one time, short stays in the hospital, but after dozens of visits, I can't take the food anymore.

I know most people have one-time, short stays in the hospital, but after dozens of visits, I can’t take the food anymore.

That is the worrisome part. Or, the part I don’t want to talk about right now.

I pounded out a decent amount of work while in captivity. Sometimes even I wonder why I do it, but I’m just programmed that way.

And perhaps that was the most stressful part of the jail time – work.

Our 8-person group is coming under fire from new management for reasons unknown. It’s a little like elementary school when the entire class loses their recess because of the actions of a few. I just saved anyone reading this the details, but it created a lot of stress for me not just in the way work stress does. Instead it made me realize I can’t put up with some of this bullshit anymore as my life comes to an end. It’s not worth it and my time is too valuable.

I will say this: If it weren’t for my wife and daughter, I might give up. Yes, I know I’m the luckiest man in the world, but even with that in mind, getting painted into a corner in life, or feeling trapped, can make one feel hopeless.

It’s always the total load, trying to work, make money, avoid jail time, keep my lung function up, and float on top of the cloud of trivial bullshit some people live in.

Some days it feels overwhelming and I wish I were pushing a basket around downtown Los Angeles with my black lab and IV machine in tow, which may be happening soon the way work is going these days.

So, with a heavy mind, I spent a lot of time escaping into videoland at night, watching movies or runs of TV episodes, like House of Games (awesome), and Justified (pretty good; I wish I was either the actor that plays Raylan Givens, or Givens himself. There is something to be said for being cool in life).

So, life goes on as I complete the IVs at home, Inipenem every six hours with a 3-hour drip, and Tobra once a day for 60 minutes.

I’ll have plenty of time to think about my next move before others make it for me.

Lightning Strike

20130115-195950.jpg

Having cystic fibrosis is like getting struck by lightning on a sunny day.

Where did that come from? the onlookers say. I don’t see any burn marks, where’s the damage? Did that really just happen?

There I was, living my life, feeling good, not a care in the world. Then, BAM, lightning bolt to the arse. How embarrassing.

I had made it out alive through the holidays, with their rainy days, crowds looking at Rose Parade floats, and the mass of tourists and humanity at the Farmer’s Market in L.A.

I dodged a cold that infected my daughter, then my wife.

I was made of steel. Rock solid.

I refinished a kitchen table. I started building a bench from reclaimed wood. I could have been a lumberjack and toppled trees with my manly bare hands.

Then I went for PFTs.

And failed. With a capital “L” for loser.

Blow, blow, blow, keep it going. Go, go, go. Take a breath. ARGGHHHHHHHHHHH.

Do not pass Go. Do not collect $200, but do collect your suitcase, iPad, UCLA t-shirt, laptop, stash of reserve meds, and nebs.

You’re going in.

Roger, five-zero to base. We’re over the drop zone. Jump, jump, jump.

And here I am five days later, an IV pump humming its annoying song next to me. And the drone of the hospital that reminds me of flying on a plane. Bite me.

The icing on the cake of pain was watching my Broncos choke when they had a 97% chance of winning at the end of regulation.

Oh, the blood. The suffering. The heartbreak.

That’s what I get for wearing metal pants.