Category Archives: cystic fibrosis

Random thoughts on a cold December night

Posted on by
4

It’s only a guess, but losing lung function overnight must be what it’s like to lose most of your money all at once. It’s painful, depressing and takes every ounce of effort to keep going. And you wonder if you’ll ever make it back.

The funny thing about Labradors is they have the uncanny ability to seek out and discover the most comfortable place in the house - even if they're not allowed on the furniture.

The funny thing about Labradors is they have the uncanny ability to find the most comfortable place in the house – even if they’re not allowed on the furniture.

That’s where I am right now – missing my lung function and still in disbelief of how fast it happened. It’s clearly not fair, but confirms what I’ve been telling my daughter for years: life isn’t fair.

Regardless, I’m staying positive. I’m still in the game, baby. And who knows what 2014 will hold? Something good? I think so.

Work sucks. Not in the sense that I’m not happy to have a job in this economy, though by the articles lately it shows the pre-recession wealth has returned to the country, but in the sense the way we work seems . . . unproductive, counterproductive? In fact, I feel like writing a book on what not to do while working for a big company.

Here’s the title of the first chapter: “Put the fire out before asking how it happened.” Or, perhaps, “Yelling at a fire won’t put it out.”

I don’t know, work in progress.

That’s it. I’m a few days away from a long vacation, which means I’ll have more time for myself and family and doing what I enjoy, like writing blog posts instead of emails and PowerPoint slides.

Happy Holidays.

[Here’s a counterpoint on whether the wealth has really returned or not: http://www.latimes.com/business/hiltzik/la-fi-mh-wealth-20131210,0,3027347.story#axzz2n7U8sVI7 ]

****

Did anyone get the license-plate number of that virus?

Posted on by
3

I always thought the flu was the worst virus I could get. Oops. I was wrong, which makes me wonder what virus I really did catch. But like an unidentified “hit and run” driver, I’ll never know.

So, a big “FU” to the mystery virus from hell.

After three weeks of IVs, I’m done. Today will be my first shower in three weeks. I can’t wait. Even the dogs won’t get near me, and I have exceeded my own comfort level of grime.

My FEV1 hasn’t budged. I’m still coughing up a lake of phlegm three times a day. Oh, well, what can I do that I’m not already doing?

“Carry on and keep calm,” says the Wise Man.

It’s bright and sunny in Los Angeles today and life is good. And with a little luck, I’ll see another Thanksgiving and Christmas with my family. It doesn’t get better than that.

Happy Holidays

***

Post-hospital Stress Disorder

Posted on by
9

I miss my night nurses who sneak in under cover of the hallway lighting and administer my evening IV doses, all while I sleep away, no break in my warped hospital dreams. Last night, with no nurse to save me, I turned off my 4 a.m. wake up call and went back to bed, screwing up my antibiotic schedule for the day.

Mycin, the IV-antibiotic groundhog, saw his shadow at my post-hospital appointment this week, and I’m continuing home IVs for 7 more days. Oh, yay. Seven more days of no shower and limited sleep.

Yo, chump, you get 7 more days of IV antibiotics not because I didn't see my shadow but because I had to look at your ugly mug. © Vladimir Melnik - Fotolia.com

Yo, chump, you get 7 more days of IV antibiotics not because I saw my shadow but because I saw your ugly mug. © Vladimir Melnik – Fotolia.com

I must give a shout out to the CF Team. They’re fantastic and a bright spot of humanity. They’re people who care about others in a world full of . . . well, fill in the blank with your own opinion. It takes a great team to survive this disease.

My O2 isn’t back to normal. And I have a bad attitude, along with a craving for Jersey Mike’s meatball & cheese sub sandwiches, which I’ve eaten almost every day since coming home.

I’m back at work, and grumpy about it. If a hospital stay, daily fevers and the continuing erosion of my lung function shine a revealing light on anything, it’s the bullshit of the trivial aspects of my job. The politics, the positioning, the posturing, the game, and most importantly, the work that does and doesn’t matter. I don’t know how much more I can take of feeling like I’m not doing something valuable with my remaining time. Designing PowerPoint presentations makes me want to stand in front of a MetroRail train.

I know it’s a cliché, but some days, “one day at a time,” really does save my ass. It’s my immediate ticket to not thinking about all the bad things that can and may happen. It works. 

One day at a time. One day at a time. One day at a time.

A virus pulls me down to hell

Posted on by
2

It started with a cough, a little drier than normal. A simple cough.

I had just gone 28 days without antibiotics of any kind – the first time in six or seven years.

I was feeling great  – “King of the World” great, arms raised, hanging on the bow of the Titanic. I was walking between 60 to 80 miles a week.. Life was fantastic.

But, as always, the scales must be balanced in my life. And, Hubris punished by the Universe. I needed to be taken down a few pegs.

The battle started the next day, Monday, as I felt drained by the afternoon. On Wednesday night the first fever hit when the Universe stuck its icy fist through me. That’s how each fever came on, in an instant, without warning, like getting hit in the face with a pie by some crazy meth-addicted clown.

By Friday I couldn’t take it anymore and asked to be admitted to the hospital, but was told viruses aren’t treated with IVs. I was given oral cipro as a precaution and I kick myself for not pushing back more but I’ve never had the power to force the issue of being admitted. It’s like shooting myself in the foot. I can’t force the jail stay.

I was told to call the weekend number if I got worse. And I got worse. But I was pissed that I didn’t get admitted on Friday and hate going in on weekends. So, I thought if I die, this is on them, which is pretty stupid, I know, but I’m never been smart enough to avoid limiting my suffering.

There is something about this poster that feels appropriate for this post. Oh, yeah.

There is something about this poster that feels appropriate for this post. Oh, yeah.

Monday I emailed and asked to be admitted. I couldn’t take it anymore.

And for 10 days in the hospital, I slept, fought fevers and watched Sons of Anarchy seasons 1 – 5, a show I never thought I’d enjoy but did – 10 days of hiding out, disengaged from life, never once leaving the front doors of the hospital.

And though I’m home, I’m not back to normal. My oxygen level is still lower than normal and my pulse higher, and I’m tired. And, once again, I’ve got to claw my way back to normal and I’m not sure how much of me is gone forever – what piece was taken this time?

God, I hate cystic fibrosis.

My wife decides not to leave me for Jackson Browne

Posted on by
Reply

She was two feet away from him, back to back – close enough to inhale his rock-star pheromones and hear his “Running on Empty” voice talking to the people behind us in line.

The moment she’d waited for her entire life was here.

The man, the artist, standing right there, within arm’s reach, as we waited to see him and other musicians perform a benefit concert at the Theatricum Botanicum in Topanga Canyon. 

What cruel twist of fate brought this choice to her now, after all of these years of waiting, hoping?

She needed to decide: say nothing, or seize the opportunity to meet the man of her teenage dreams after years of longing and listening to his music, first on scratchy records, then CDs that could easily be played over and over again until the laser in the CD player burned out. And of course there were the dreamy posters of Jackson with his cool rock-star hair and model good looks.

Oh, Jackson, if we ever meet, it will be love at first sight for the two of us. 

I must say that Jackson Browne seemed like a very cool guy. He hung out in the line with some friends before the show, and sat on stage the entire concert and watched the other artists. The joke all week prior to the concert was telling my daughter that we might have to hold her mother back from rushing the stage. But there we were four rows back and my wife stayed put.

[click to enlarge} I must say that Jackson Browne seemed like a very cool guy. He hung out in the line with some friends before the show, and sat on stage the entire concert and watched the other artists. The joke all week prior to the concert was telling my daughter that we might have to hold her mother back from rushing the stage. But there we were four rows back and my wife stayed put. BTW, though JB played only one song, the concert and other artists were amazing.

All she had to do was turn around, look him in the eyes, and say, “I’ve dreamed about you for years. I’m yours, kiss me now, I’ll leave my husband and we’ll run away and live off of your money until the end, which, because you’re older, will probably come sooner.”

But she didn’t. She chose me over of an aging multimillionaire rock star. Yes, me, a genetically defective mutant who spends several weeks each year in the hospital.

And all I have to say is, WHAT WERE YOU THINKING, HONEY? That was your chance and you blew it.

Poor Jackson. He’ll never know the love and goodness he missed out on.

Underdog 1, Jackson Browne 0.

One simple Obamacare thought for the day that I’m probably completely wrong about

Posted on by
9

I guarantee this isn’t a political post – I dislike all politicians these days except for Elizabeth Warren who I think we should clone and elect as Senator in every state. And clone and vote in as President and Vice-President as well.

Senator Warren, please accept my invitation to join my family for dinner anytime you'd like. Call me.

Senator Warren, please accept my invitation to join my family for dinner anytime you’d like. Call me.

So, aside from my 100% E.W. government fantasy, another thought keeps going through my head and I wonder if anyone else has had it or if it’s just me.

Here is it: I wonder if those in our government who oppose Obamacare do so because if the program is allowed to stay in place, it frees those who work for corporate America to be choosier about where they work, and even grants them more freedom to start their own businesses.

This theory centers around the thought that many people stay with their corporate jobs because of the benefits, specifically health care. But now with the opportunity to buy health insurance free of a company job, what will that do to the power of corporations over our lives? And, would it make it easier for people to quit a job they didn’t like and move on without the fear of losing benefits in the process?

So, that’s my thought for the day. I’m pretty sure I have it wrong.

Treadmill Desk: 3-month Update

Posted on by
6

Three months down, a lifetime to go. Here are my observations:

My fingernails and toenails grow faster. I know that sounds odd, like I’m Howard Hughes holed up in Mexico watching Ice Station Zebra, but I swear I cut them more often, especially my fingernails.

I can put my pants on without falling over. That makes me sound like a drunk or something, but I have incredible stability now. It doesn’t mean I can stand in front a of moving train and stop it, but I can give flamingos a run for their money.

I’ve tripled my weekly distance. I went back and looked at my first blog posts. I started with weekly mileage in the 20s. Not I’m walking between 55 and 70 miles a week. My daily record is 16 miles.

I walk faster. My minimum speed now is 1.3 MPH, but I can type at up to 2.7 MPH, though the more concentration I need, the slower I go.

The detritus of cystic fibrosis pollutes any desk.

The detritus of cystic fibrosis pollutes any desk.

My conditioning has improved. At a work dinner this week in Manhattan Beach, I dreaded walking up the hills to the van after a dinner of raw clams, scallops, french fries, and three scoops of ice cream, including a maple-bacon flavor that made cry it was so good. Surprise, I made it and didn’t feel completely winded. And, I kept talking while I walked. Miracle.

My work pants fit better. I’ve lost about five pounds, and most of it seems to be from around my waist. I still eat too many Mini M&M’s.

Treadmill desks get just as messy as regular desks. I need to move my Denver Broncos trash can closer.

Last thought: I wish I’d started walking while working years ago. I’d be in much better shape today.

The video on stress that helped me a great deal

Posted on by
2

Based on the number of stress-caused visits I’ve made to the emergency room in my lifetime, I’m the last person to give advice on dealing with stress.

To the rescue: ted.com.

I share this video in the interest of helping others deal with something I’ve done a really lousy job of overcoming. And, thanks to the the content of this video, I think about stress in a different way now.

Who knew it was so simple?

What keeps me up at night

Posted on by
4
I believe we make our own luck, but that doesn't mean it's not fragile and fleeting.

I believe we make our own luck, but that doesn’t mean it’s not fragile and fleeting.

For a long time it was stress and the fear of not waking up. Now, it’s something else. When I finally figured it out, it surprised me – a lot.

It’s luck.

Yes, luck, and thinking how lucky I am to have everything I have. A great and caring wife, a perfectly imperfect daughter, 1,850 sq. ft of house, with equity, black and yellow labradors, good friends, a job.

Life hasn’t always been this way for me. But it has been lately.

I am grateful for having so much in a world growing hotter every year, filled with too many people living in poverty, and too many people who believe they never have enough, though I can’t exclude myself from that last category many days. I’m surrounded by daily reminders of great wealth in Los Angeles: McMansions, 100K+ cars, and an environment where my daughter counted how many kids in her class brought MacBook Pros to school, making her inexpensive ASUS seem inferior, though I will be speaking to her that it’s not the computer that matters, it’s what you do with it.

But what keeps me up nights is thinking about how lucky I am and how I could have it so much worse than I do. And wondering when I will.