Darn FEV1

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That's about the best I can muster right now. Whereas, on the steroids and Cayston, that would have been a low for me. Argh.

That’s about the best I can muster right now. Whereas, on the steroids and Cayston, that would have been a low for me. Argh.

Most people go their entire life without knowing their FEV1. How lucky is that?

Now that I bought this little FEV1/6 meter, I know mine every day, and throughout each day.

It’s a love/hate relationship. Or at least one of happiness, or frustration, depending on the results. It’s the medical equivalent of a mood ring for me.

On the plus side: The tiny meter did help the doctors diagnose the TOBI podhaler bronchospasms, which were solved by eliminating the podhaler and adding oral steroids and Cayston.

The not-plus side: Over the past 3 weeks, since staring inhaled Tobra through the eFlow, my numbers continue to go down, but not as quickly as the podhaler.

So, the guessing game begins: Am I having bronchospasms? Is the Tobra not hitting the bugs as well? Would oral steroids work again? Is it allergies? Am I reacting to M&Ms or something else I’m eating?

What am I doing to cause the FEV1/6 drop?

It’s difficult to impossible to answer, as I’m not running my life to the standard required for a scientific experiment.  CF is so sophisticated I don’t know if it would matter if I did. Just one more reason to hate the disease.

Cotton-Candy Flavored Grapes: A Sign Our Species Is Doomed?

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At our recent summer dinners, my daughter and I fight over cotton-candy flavored grapes, seeing who can grab and eat the most from the bowl of mixed fruit. The winner is the one who grabs the last from the bowl.

Grape-fight Royale.

But then I got to thinking, which is always a dangerous thing in my case, why make grapes taste like cotton candy?

Yum, yum, yum, yum, yum, burp, yum, burp.

Yum, yum, yum, yum, yum, burp, yum, burp.

Grapes already taste great by themselves. It’s not like you need to convince most people to eat grapes – it’s not a hard sell, though I’m sure there are grape haters out there. But if I had to guess, I’d say grape lovers outnumber broccoli lovers.

So, why improve the taste of a smooth, green fruit that Mother Nature made ready to eat as is? That’s not to say she didn’t make broccoli ready to eat and full of healthy ingredients. She just gave the good taste to grapes, not broccoli.

It makes me wonder if these wonderful flavor-injected grapes aren’t a sign of something greater, something wrong with our world.

Like global warming and the end of our species.


cotton candy grapes 2

As in . . . the world is melting while we’re all marveling over how great cotton-candy grapes taste, and saying, wow, how did they make grapes taste like cotton candy? and, Aren’t these impressive? and the person who came up with this should get a medal . . . and meanwhile the world is heating up and a bunch of scientists are jumping up and down screaming, “the planet is in trouble and we’re hosed if we don’t act now,” but no one hears them because we’re all gorging on these amazing grapes.

Okay, so I’m pressing some boundaries here, but these grapes are telling me something about the way we live. Or, maybe, they’re just fruit improved by humans. I don’t know. But there is something about them that bothers me.

And until I figure it out, I’m going to eat as many as I can.

Parents of a Jr. High Schooler

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I wonder if we had fed her less over the years, she would have stayed small and cuddly?

I wonder if we had fed her less over the years, she would have stayed small and cuddly?

I remember the day she popped out her mom. It was yesterday. Or it feels like it. I remember every detail of it.

Where did all of that time go?

Today, our daughter started Jr. high school. 6th grade. Holy Tweener, Batman, when did she get that old? I remember going to the school’s Christmas shows and thinking, “wow, look how big those Jr. high school students are. Glad that’s a long way off.”

I AM AN IDIOT. That time is here.

So, on my 29th work day in a row, I’m a little discombobulated by the speed at which my daughter aged. It seems very unfair. And, if there is a God, I’d like to register a complaint with her right now.

The sweet spot of childhood is definitely over. Ages 2 to 11 are the golden years – pajamas with feet, princess dresses, riding on my shoulders, Santa, the Easter bunny, Disneyland trips just before Christmas, a homemade dollhouse, the beach, bringing home a yellow lab puppy.

Don’t be surprised if you read my blog post in seven years about how I’m going to miss the last seven years and how quickly they went. It’s gonna happen.

Yes, Heaven, hello. Please connect me to the complaint department. I’d like to discuss the concept of time and childhood and how to improve it. Yes, I’ll hold. 

The 87-hour work week (Yes, there is a hell)

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I wake up between 7 and 8 in the morning. The red light on my Blackberry flashes and I check my email while I’m still in bed. Then it’s a short walk to my laptop.

The workday begins. And it’s intense. Not a leisurely day. Juggling to-do items, and nervous people who have never done a multi-city event before, and email – loads of email, which makes me remember I used to be creative in this job. Now I write email.

Chisel this on my tombstone: He wrote a shitload of email, and some were well written. My legacy.

As the day goes on, I eat breakfast and lunch at my desk. I take a couple of short breaks during the day, and I eat dinner with my family before going back to work until between 11 and midnight.

My dreams are made of these. © Tryfonov - Fotolia.com

When I work at Home Depot, I plan and saying clever things, such as, “ex-screws me, do you need help?”  © Tryfonov – Fotolia.com

Repeat.

Tomorrow will be my 24th work day in a row. At least my schedule is easing to 11 and 12 hour days, but I am tired. And I think a lot about doing something else with the remaining hours of my life. I should be able to do better than this.

I dream of working at The Home Depot in the screws and bolts aisle, and telling customers the unique qualities of flatheads, phillips and square-drive heads – when to use galvanized, stainless steel, or deck screws – and when to give up and call a contractor.

I dream of simplicity and meaning.

Treadmill desk update – background tasking at its best

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[Written with British words to make it easier for my two mentally challenged British readers to understand. You know who you are.]

After three weeks of using a treadmill desk, my arse is so ripped you could shoot it with a gun and the bullet would bounce off. I have a rear-end Superman would be jealous of.

Go ahead, shoot me in the rear. Nothing's gonna happen. It's like rock. I look just like this now, but without the curly cement hair. © PRILL Mediendesign - Fotolia.com

Go ahead, shoot me in the rear. Nothing’s gonna happen. It’s like rock. I look just like this now, but without the curly cement hair, which looks a lot like a brain popping out of his head. © PRILL Mediendesign – Fotolia.com

Actually, I’m not writing this post while walking. I’m too tired because I walked 12 miles yesterday in just over six hours, and 10.5 miles today.

Five minutes ago, I was stretching on the floor and it was hard to get up. It feels like the first week again, but only because I’ve upped the speed to 2.0 mph, and sometimes 2.5 mph.

And I’m feeling every mph of the increase and wishing I could rip the cap off of bottle of Motrin and take it all, pills falling out of my mouth like broken teeth. All because I’m a madman and want to see how far I can push myself.

Working on the treadmill is better than I ever thought it would be, as I don’t have a lot of other ways to move during the day. And I’d never go outside and walk 12 miles all at once. Bor-ing. But doing it in the background as I work, which I have to do, well, it’s awesome for someone like me. And I feel like it’s helping my conditioning.

There are only two downsides that I can see so far:

  1. I drink a lot of water and thus visit the loo more often.
  2. Now that I’ve upped the speed, I sweat more and get hot and have to strip down to my boxers and running shoes, which made my wife turn her head today. She noticed the man musk too. If I didn’t have to work, an Axe commercial might have played out in my office. I’m irresistible in black and blue labrador boxers and orange/gray running shoes.

My weight is still the same, but it could be because I eat a lot of crunchy Cheetos or M&Ms mixed with gummy bears while walking. Or it’s the steroids I just finished. I’m trying to cut down on the snacks. 

That’s it for tonight. I plan on sleeping like a baby – A BABY WHO JUST WALKED 10.5 MILES! Oh, yeah, I’m awesome like a possum.

My work-cation comes to an end and my top five vacation moments

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The good news: Monday’s return to work won’t be quite the shock it normally is after a vacation because I worked most of the time I was on vacation. (This is my “glass is half full” attitude, which is kind of working for me right now.)

The bad news: I have to go back to work on Monday and I won’t be in Ventura CA doing it. And the next few weeks of work will be brutal.

One of the highlights of the trip was watching my daughter learn to boogie board. When my advice failed, she got angry. When it worked, she caught a wave and yelled, "Did you see that one, Daddy?" Yes, yes, I did. And it was great.

One of the highlights of the trip was watching my daughter learn to boogie board. When my advice failed, she got angry. When it worked, she caught a wave and yelled, “Did you see that one, Daddy?” Yes, yes, I did. And it was great.

I heart Ventura CA. And if it weren’t for our friends and my daughter’s school, I’d move the family. My wife, however, says my love affair with Ventura and the ocean is vacation-related and living there would be something different. And though my wife is right more times than I care to admit in writing, she’s wrong on this one (I think). I could live there in a heartbeat, even if we were miles from the ocean, which might be warmer and a better choice.

The house we stayed in was around 900 sq. ft. So, coming home to over 1,800 sq. ft makes our house feel almost McMansion-like. In fact, it makes me feel better that we didn’t do two things:

  1. Add on to our house during the real estate boom, which we thought about and would be still be paying for right now if we had.
  2. We didn’t move into a larger house, as it would mean more to clean, to heat, to cool.

That’s not to say I wouldn’t like more space around the outside of the house and a workshop for my tools, but the physical space we need to live in might not be as much as I thought. I just need to be more clever with the space we have.

Since returning mid-day yesterday, Saturday, I haven’t done much at all. I returned to my Treadmill Desk (over 8 miles walked) and escaped into a novel (The Cuckoo’s Calling) while doing it. I have a dozen projects around the house to complete, but haven’t worked up the energy to tackle one of them, owing my laziness to having a lot on my mind, like how to get rich and buy a vacation house in Ventura. Simple thoughts like that.

My top five Ventura moments:

  1. Standing deep in the water and watching my daughter boogie board and catch a huge wave. Her eyes got really big and I could tell she wasn’t too sure about it (a fear/excitement cocktail). But she held on and I was there to see it. I am lucky.
  2. My wife’s crazy lip-sync dance to a reggae song, and the fact I videotaped it for embarrassing her at a party one day. Priceless. Gold.
  3. Dinner with our good friends, outdoors, at the Sushi House on a perfect night. Great food, laughs, and excellent sushi a block from the beach. What more is there to want in life?
  4. Go-kart racing with my 12-year-old nephew and literally driving him into the rail/wall when he tried to pass me. Gotta teach the young ones to respect their elders now, don’t we?
  5. Dinner at Rice Thai with my wife, daughter and 10-year-old niece, who stayed with us for three days and came up with the idea she wanted to own the sun and sell sunlight to everyone. It’s good to think big before the reality of life crushes your dreams (hey, what happened to my “glass is half-full” spirit? That didn’t last long).

That’s it for now. Back to the chain gain and breaking rocks.

Breaking up with people who probably already broke up with you

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Last weekend, on the beach, we met a very nice older couple. Our dogs met first, as their rare breed, 80 pounds, black and white with a patch over one eye, had a crush on our common black lab and couldn’t help but go Hugh Hefner on her every five minutes, until the leash came out and took the spark out of the stud.

Details about the couple: husband with salty gray, wavy, windblown hair, a deep tan, Ray-Bans, quiet; she of proper upbringing, talkative and charming, warm. They live in Santa Monica and have a house up here in Ventura they visit on weekends. They’re intelligent, articulate and the husband worked in Hollywood for a long time, making them successful. They have a son who is an engineer and working with a racing team back east.

Oh, and they’re in a class above us – the one I’ve always wanted to be in.

This is my calming ocean photo. I look at it and relax and forget about people that drive me nuts.

This is my calming ocean photo. I look at it and relax and forget about people that drive me nuts.

So, right off the bat, I’m depressed and jealous, a bad combo.

Why are they speaking to me? What do they want? 

My wife tells the woman, Joan, a name I just gave her, that I know and write about automotive technology and luxury cars. And Joan, it turns out, is in the market for a luxury car I know a lot about. We have a great talk about it on the beach, as I keep one eye on the dogs to make sure Cali doesn’t run up and steal someone’s food, which she likes to do.

And Joan and I continue what I like to call, “rich people speak.” I can’t explain it. The tone of the conversation is unique, and uncomfortable. Name-dropping, lots of questions about what you do. A sizing up of the other person. Networking for one’s personal benefit? (Is there any other kind?)

We hang out with them for about 20 minutes or so, and Joan asks us if we’ll be around next weekend (yes), and if we’d like to come over for a glass of wine (yes). Great, she and her husband will stop by later with their contact info.

Two hours later, they show up. I’m standing on the front patio when they pull up. Joan gets out of the SUV and gives me a piece of paper with their names, phone number and address. Again, they’re super nice, which makes me wonder again why they’d want to hang out with me. My wife, I understand. She’s the nicest person in the world. But me? It’s all about the cars, which I’m okay with, and used to. People love to talk about cars, but it’s usually men.

The week goes by. I ask my wife to send Joan a text on Friday. She does. We don’t hear back, but then Joan and her husband show up at our door later that day. She has information on tomorrow’s Artwalk (Did you know about it? Yes. Are you going? Yes. Would you like to hang out and have fish tacos? Yes.)

We talk for 10 minutes and I probably say a bunch of stupid things (to be discussed later in this post). And she tells me she didn’t see the text from my wife.

The next morning rolls around. I send a text to Joan on my wife’s iPhone because my Blackberry is drying out after its swim. But I don’t hear back.

We arrive at the Artwalk with a couple of our friends and I call Joan. It rings but she doesn’t answer and I leave one of those messages where I didn’t plan on leaving a message and sound like a complete idiot. These calls come easily to me.

We attend the Ventura Artwalk, which is a bit of a disappointment, as it’s more “walk” than “art.” I don’t hear back from Joan. And it drives my OCD mind crazy: Why did they come by twice and then stand us up?

I re-think their second visit to our house and analyze everything I said. What did I say wrong? I was nervous for some reason – stretching to be cool? More name dropping? Was it the point I made of how similar Google employees seem to Hollywood people, that they’re special and in the in-crowd? Arrogant? Did I piss off her husband?

I can’t figure it out and my wife doesn’t understand why I’m concerned. She doesn’t care. And it’s not that I cared, as much as, I was curious what went wrong.

We went to the beach at the end of the day with the dogs, and who do I see down the beach? Joan, her husband, and their horny exotic dog. They’re leaving. (Did they see us and leave?) I have a business card for them. So, I follow them home. (Yes, I’m aware that sounds very stalker like, but it was to give them the card, not peer in their windows.)

I catch up to them at their house, as 50% lung function does not make for moving quickly through deep sand.

Again, they were super nice and offer water, which I thought was for me, but was for my yellow lab, though I did think about getting down on all fours to share it.

We talked about the Artwalk. Joan forgot her phone, and they too were disappointed in the lack of artwork. I complimented her husband on an amazing career in Hollywood – I looked it up on the Internet. And I told him he should write a book about the experiences on the different movies. At some point, I slipped in a stupid comment about wanting to make sure everything was good, as I’m prone to saying stupid things. It’s a blur how I threw that comment in. (Come on, I’m insane. I’ll never know where the stuff that comes out of my mouth comes from or why.)

(Now here is the “breaking up with people who probably already broke up with you” part of the story.)

So, Joan asks how long we’ll be in town, as if to hook up with us again. (In a Bronx accent in my head: Oh, no you didn’t. Oh, no you didn’t just say that.) I’m having none of it. No way. She’s just being polite. How many unreturned messages will it lead to? I can read the signs, babe.

“That’s okay,” I say. “We don’t want to bother you. I just stopped by to give you my card in case I can answer any questions about the car. That’s it. “

“Well, we know how to get in touch with you then,” she said.

We say goodbye.

Back to the beach, I went, Luna, hydrated, at my side.

Was it the orange Cheetos stain on my shorts? My week-old, bristly beard and the four long hairs sticking out of my left cheek that I was too lazy to shave or pluck? How stupid did I sound? What mistake did I make?

I’m sure they were relived after I left and looked at each other in agreement that meeting strangers on the beach would be something they would never do again.

BUT THEY CAME TO OUR RENTAL HOUSE TWICE! Twice. I don’t get it.

I’ll never know what happened. And that’s the part that will drive me crazy – for frickin’ ever and a day.

ARGGGGGHHHHH. Damn dogs. Next time, I’m getting two pit bulls, not cute, friendly Labradors.

The ocean never disappoints

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Our yellow lab loves the water. And she gives her endorsement of this blog post.

Our yellow lab loves the water. And she gives her endorsement of this blog post.

I’m on a work-cation with my family this week. Ventura, 8 houses from the beach, with a clean view of the ocean from the upper deck.

And it’s great, as always. I would live here if I could solve the puzzle of how to make it happen. My lotto-ticket strategy has been a wash-out of an idea.

This was a supposed to be two weeks of vacation for me, but work killed the “cation” part, though I had most of Friday off. At least I’ve been able to work 8 or 9-hour days and get to the beach in the late afternoons. That is the best part because, as I said in the title of this post, the ocean never disappoints.

I’d make a mess trying to explain what that means, but it’s what I think every time I stand there and look at the water. And maybe it comes from my new way of living in the moment – treating it like my last – noticing more, and staying off my Blackberry, which fizzled out yesterday in a Ziploc bag that was supposed to keep the salt water out – but didn’t. Now the phone lives in white rice. Fingers crossed it comes back to life.

The dogs enjoy the beach like my daughter at age 5 enjoyed Disneyland, when Princess-chasing was a sport. The dogs chase the tennis ball until they can’t. I had to check to see if Cali was still alive the other night. I jabbed at her with my feet to move off the end of the bed and she didn’t respond. I put my hand on her chest to check her breathing. Out like a light, but alive.

That’s it for today. A simple post. No faux heart or panic attacks to write about. No stress. Just more good fortune of having everything I need today.

Bronchospasms, tiny pills, and the 65-hour work week

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It’s a skill to open a box and bottle of baby aspirin in Rite Aid while you’re having a panic attack,  can’t breathe, are bloated from eating 11 plates, or over 22 pieces, of $2 sushi for dinner followed by Baskin-Robbins Watermelon sorbet on a sugar cone, sport an irregular heartbeat, have a blood pressure reading of 150/99 measured on Rite Aid’s free blood-pressure measurement device, and have the strong feeling you’re going to fall into the pharmacy shelves dead, shitting your pants right next to the boxed enemas.

Ironic, it’s the best way to die.

I chewed one pill, then another, and one more for good measure, making sure I didn’t take too many and cause other problems, like coughing up blood, or a another nosebleed from hell.

I walked in measured steps to the Rite Aid cashier and presented her with a mangled box of generic baby aspirin. She didn’t skip a beat scanning the bar code, and I wondered if I was the only one to ever hand her medicine that looked like a bear had opened it.

“Would you like your receipt?”

“Sure. Thanks,” I said, suppressing the urge to ask, in my calmest and most relaxed, “hey, life is grand, and sorry to bother you with this,” voice, “but can you tell me where the nearest hospital is?”

I left with aspirin and receipt in hand and climbed the sloped parking lot, careful not to raise my heart rate and feel more out of breath. At the car, I opened the cap of my personal pill bottle and removed an anti-anxiety pill, Ativan, which is the smallest pill I’ve ever seen, and exactly the opposite size you want to be finger-wrestling with when your hands are shaking. Could the makers add some bulk to it, please? Handlebars? Make it stick to the skin? Something to reduce the stress of thinking you’re going to drop it and watch it roll down the slope of the Rite Aid parking lot, under a car, and into a tar pit of oil slime.

And what choice would there be but to go face-down on the black top, stretch for it, and flick it out, hoping the owner of the car didn’t show up and run you over, or wasn’t a card-carrying member of the Rancho Cucamonga mafia with a fear of people planting a bomb under his car.

But that didn’t happen.

I held onto the pill and swallowed it with a bottle of water that had been rolling around my car for a couple of months, as I forgot to buy one in Rite Aid and didn’t want to walk back. And who knows what I put in my body from drinking hot water filled with leaching plastic chemicals. I’m thinking it will be years before it catches up with me, and odds are that something else will take me out sooner anyway.

While waiting for the tiny pill of happiness and good times to kick in, and hoping my heartbeat didn’t go into A Fib, which I hate, I had the usual internal debate that comes with my panic attacks: To E.R. it or not?

That is always the question, and the answer is always a trip to the E.R., where I calm down and leave with instructions to follow up with my personal physician. But this episode was different, as the CF team had prescribed two weeks of my arch nemesis: Prednisone.

No drug hurts me like this tiny little fucker. It’s the wicked witch to the anxiety med’s tinier good witch. It raises my blood pressure, makes me nervous, delivers hallucinations, and, during tapering, makes me angry like the Hulk, but red, not green.

I waited in the car, then out of the car, then in the car, out, in, out, for the anxiety med to switch on.

Should I try to drive the 70+ miles home? What if I am having a heart attack? Would I die driving?

I practiced my relaxation exercise of taking a deep breath in through my nose while pushing out my already bloated-stomach filled with $2 fish and rice, lots of $2 fish and rice, and blowing out slowly by pulling my stomach in, not the most comfortable process.

And I repeated my usual mantra: I am such an idiot. I hate cystic fibrosis. Breathe. I am such an idiot. I hate cystic fibrosis. Breathe.

And I waited.

*****

My work week started at 7:00 a.m. Monday morning and didn’t end until late Friday night, which I don’t think gives away the ending that I lived. At most I found time to eat and sleep during the week, but the rest was work or thinking about the time-sensitive, large-budget “so everyone has an opinion” project at work. And the pace was intense and filled with barbed wire to climb over.

And then I took a crash course in Bronchospasms 101 and wished that I had purchased my new FEV1/FEV6 meter years ago. At least I had it now and was able to track the TOBI Podhaler shooting down my lung function and oxygen saturation days before a meeting in Rancho.

Ah, more CF cruelty: new med, lower lung function. Are you kidding me? Really? 

After numerous emails and conversations with the CF Team (a great group of caring people), I killed the Podhaler and replaced it with the drug created by the devil himself, Prednisone.

For the first time in seven or eight years, I dropped all antibiotics – nothing or nada in my mouth or veins with “mycin” in the name.

Cold turkey, baby. Where’s my one hour chip?

So, with my FEV1/FEV6 way down, I replaced antibiotics with steroids. Again, are you kidding me? Who thought up this cruel joke?

But once again life proves why a valid medical degree trumps an Internet research certificate: my doctor was right and my lung function started going up once I dropped the Podhaler and swallowed the steroid. But that didn’t keep me out of the Rite Aid Parking lot.

****

I took a risk sitting there in that parking lot and drove home with my pants unbuckled to make room for my whale belly and my “on the go” breathing exercises.  I didn’t care if I lived or died. I just didn’t want to go to ER again. Couldn’t do it. No way. I hate the process too much to endure it. The hours of waiting. The questions. The strange looks. The “you have CF?” comments, followed by something like, “but you look healthy.”

When I got home, I didn’t tell my wife what had happened. I stripped off my office work clothes and put on my work-from-home work clothes. I gathered my breathing treatments, stepped on my treadmill desk , fired it up, and went back to work.

And tomorrow came, again.