Category Archives: Fun & Humor

Used Cars and Oxy-“Morons”

Posted on by
8

I’ve been searching for the perfect used car now for over a month. I’ve been looking for a wagon – Volvo, BMW, Audi, or Mercedes. Just a simple used wagon. But there is one other problem. I’m frugal. So, I find wagons and they’re out of my price range or I can’t negotiate the price I want. Or they’re too old. Or, and this is the most common killer of me finding my dream car, they smell like smoke or the chemical used to cover up the smell of smoke. That’s right. I’ve come close to buying several wagons, most of them BMWs, and guess what’s stopped me in my tracks – smokers. There’s a twist of fate there when people ravaging their lungs with cigarettes prevent me from getting a car. Every decision in my life is connected to breathing or someone else’s breathing, or so it seems.

My wife found this wagon for me, which tells you a little bit about her rubbing salt in the wound and the neighborhood we live in.

I also have the pressure of making sure I buy a car that is safe and reliable because should something happen to me the car I choose will be driven by my wife with my daughter riding in the backseat. They’ll also be driving and riding in it now, too, so it needs to be road worthy, unlike the 13 year-old Ford I’m driving. I don’t like them in the Ford and thus the reason for a new used car. This situation creates a mental hell for me when I find something older and inexpensive, which is easy on the bank account, versus something newer and more expensive. Can I take the chance on the older car? Then, I’m conflicted with the following logic: “well, I’m going to die soon anyway, so I might as well get a nice car and spend the money.” Argh, double argh.

During the last month, I’ve dragged my daughter to dealerships all over Los Angeles. We’ve had some fun, like finding an IHOP near a dealer in Santa Monica and having pancakes for lunch, which she loved; and discovering a cool outdoor shopping area in Glendale with a store full of robots. My wife gave us a strange look when she asked us what we did that day and we replied: “we had a robot fight.”

I wish the past month had been all fun and games. I’ve had some of the typical negative car-buying experiences, but I’ve had good ones, too, with very nice, honest sales people. I have plenty of stories, but here’s the one that best typifies the conundrum of my used-car buying experience – so far.

I called a woman selling a 2002 Volvo wagon. When I asked her for the VIN so I could run a CARFAX report, she told me I’d see a few minor fender-benders listed. However, because she worked for an insurance company, she was able to get the damage fixed and, as a bonus, had manipulated the insurance report to include getting minor dings and nicks repaired. She was proud of her cleverness, though some might consider getting your employer to cover repairs not normally covered to be a gray area of honesty. This became more confusing when I told her I was looking for a car free of damage and she replied with “at least you know I’ve been honest with you.” Yes, I thought. Yes, you have. But why do I feel one or us needs a shower right now?

And the search goes on. And on. And on.

Two weeks living like a Zooble

Posted on by
10

I’m happy because 2010 didn’t end with a hospitalization due to coughing up blood. Instead, I spent the two weeks with my daughter. I wish I could say that we got a lot done or did something important like discover a cure for cystic fibrosis while playing with Zoobles in our living room, but we didn’t, though I did make sure Zoobleland is CF-free. All of the little critters are healthy. There’s something to be said for being able to turn yourself into a protective ball when needed. This magic power allows Zoobles to escape all illness and evil in the world. I wish I could do the same.

The damn Zoobles had a party and drank my Cayston, which is like 80 proof alcohol to them.

So, when we weren’t playing with little plastic toys made in China, the two of us spent a lot of time being potatoes, or slow-moving potatoes, which one might call turtles. We played Donkey Kong Wii and did some shopping. We looked for a new pre-owned car, which was a major pain in the ass and a task that is still unfinished. Thinking back on the time now, I’m not sure where it went or exactly what we did to fill every moment. But it passed, and it passed without going to the hospital.

Though time went by fast, it wasn’t stress-free. I had plenty of blood streaks to remind me it was there, waiting, lurking, ready to explode without warning. But thanks to the miracle of Cayston and three treatments a day, I escaped the hospital. I’m so lucky. Have I mentioned that before?

I have a clinic appointment this week. Though I’m feeling okay, I need to speak to the doctor about the psychology of the blood and what it’s doing to me mentally. Every cough feels like it’s the beginning of a hospitalization. I took measures over the holidays to minimize the risk of bleeding, e.g., not exercising. My plan for 2011 is to get aggressive and exercise and force the blood to come out if it’s there. Then embolize it right away. I can’t go about living with such a nasty timebomb waiting to interrupt my life. I want to go after it and not feel like I’m waiting for it. It’s time to run into battle not flee it. Let’s see how that works out. I’ll keep you posted.

Stay healthy.

Saturday Funhouse – Fox Returns with Inventions

Posted on by
8

Ladies and gentlemen,

I am one handsome hunk of fox

Fox here. I’m back. Did you miss me? If you didn’t, you can kiss my furry butt. I’m Fox and my middle name is “polarizing.” There is no middle ground with me. So, for those who love me, keep reading. The rest of you? Well, you can all F-F-F-Fade away.

Now I know what you’re thinking: Where have you been, Fox? The answer you may be expecting is “I’ve been partying,” which is a good answer, but not correct. You see there’s a side of me most of you don’t know about. I’m an inventor. I have patents for all kinds of inventions. And for the last three months, I’ve been holed up on an island in the south Pacific with my assistants Malorie and Julie, who are both top-notch engineers and help with the math I chose to ignore back in my school days (party or math class? Not a hard choice.)

The three of us have been working on inventions to make the lives of those fighting cystic fibrosis easier, even that jerk-off bum of a CFer named Unknown, whiny loser that he is.  A little blood and he runs to the hospital. You didn’t see me passed out in a hospital bed after my four-day bender with Keith Richards had me spitting up blood in a bathroom in the south of France. Some of us can take it. But I digress.

During the past four months, my brainy assistants and I have come up with four excellent inventions. I’m here today to share them with you. They’ll be available soon to buy, but I’m giving you a preview because that’s the kind of fox I am – generous and sober with my 1-day AA chip, which I’m going to bet on red to win.

Pull back the curtain, please.

Stay out of my room. You're covered in Pa.

Bacteria-finder sunglasses. Wear these glasses and you can see all bacteria harmful to CFers. Pseudomonas shows up in orange. Cepacia in red. MRSA in Yellow. You name the bacteria, we have a color for it. Friendly bacteria show up in blue shades. These are great to wear in the hospital. You’ll look like a rock star to doctors and nurses, while knowing who’s been naughty and nice when it comes to washing their hands.  “Come back when you learn to use soap and water,” you’ll say to the nasty Respiratory Therapist fresh from the bathroom and covered in C-Diff. He’ll stare with a sad-dog grin as you bust his ass for spreading germs and almost giving you the world’s most dangerous case of the squirts.

Am I still alive? iPad/iPhone app. Ever wonder what your temperature is, your O2 sats, blood pressure, heart rate, and heart rhythm are — all at once? Simply download the “WTF is going on in my body” app from Apple and you’ll know in the time it takes you to set down your mojito grande and place two thumbs on your iPad or iPhone. The CF version of the app also tells you if your lung has collapsed or if you’re just a big hypochondriac like Unknown is. And as a bonus, the Fox version has a built-in breathalyzer. Just place your mouth on your iDevice and blow (just the fact you’d do that tells you that you’ve had enough to drink).

Ring of hemoptysis fire

Dragon Gum. Nothing worse than coughing up blood. It’s a drag unlike any other. Chew this new gum and blood turns to fire. It’s quite a trick and we’re still working out the kinks, like timing the combustion of when the blood turns to flame after contacting the gum. I had a hard time kissing my PhD’s for a week after I burned my mouth on the first stick. Plus, my mouth smelled like dead flesh, making me off-limits to the opposite sex. But when this sweet tasting gum works, hello, King of the Dragon Colony. You’ll be spitting fire balls across the room. Take that cystic fuckbrosis.

IV fluid Clothing Pads. If you’ve ever been on home IVs and used IV balls, then you know it’s a pain to wedge it under your shirt by your shoulder while you’re infusing it. Hey there, Jr. Hunchback. We have a solution to solve the IV geek look – IV Bra Pads for the ladies and IV Speedos for the men. Now instead of IVs making you look like a geek, you’ll look like a Goddess or God with amazing physical gifts. And you won’t mind when the zosyn dose runs three hours. That’s three hours you’re eye candy for the opposite sex. “Why is there a line running from your bathing suit to your arm?”

I’m glad to be back and contributing to the CF community again. No need to fill my comment box with Thank You notes. I know you love me and what I do. But, hey, if you have to leave a love note, it won’t hurt me. I am, after all, a sensitive Fox who only wants to fill the world with love and happiness. Or beer and Vicodin chasers. I forget.

Party like it’s your last.

Fox out.

In the Cement Mixer

Posted on by
9

[adult language and anger warning]

It feels like someone, I mean CF, threw me in the back of an empty cement mixer and turned up the rotation speed to high. Then, as if that wasn’t enough, someone, I still mean CF, threw rocks in the mixer with me. The noise alone hurts my ears and the rocks cause bruising and welts. Then, as if that isn’t enough to cause pain, someone, you know who I mean, adds broken glass to the mixer. The glass cuts my skin and I start bleeding.

Life with CF - some days

Meanwhile, the cement mixer keeps turning and turning and the rocks keep banging against me and the sides of the barrel. The glass keeps cutting.

Then someone pours salt into the mixer, which makes my cuts from the glass burn.

All in all, this is what CF has felt like lately. First, the bleeding two months ago, two embolizations and 20 days in solitary. Fuck you, CF. Then more bleeding the day after Thanksgiving to show me who is really in charge – it’s not the doctors who perform embolizations – and eight more days in the hospital. Fuck you, CF. The hospital kicked me around too. A blown IV puffed up my left hand and I now have a two-inch vein made of rock. During the PICC line procedure my heart went nuts and a doctor actually had to come to the room. When someone was drawing blood, they hit a nerve and now I have nerve pain in my forearm. Then, one day out of the hospital I caught a virus and my white cell count shot up and set back my progress with the IVs. That’s the nutshell version.

Do I need to repeat tonight’s mantra? I think I do – Fuck you, CF, fuck you, because I’m still the luckiest guy in the world.

Homage To War of the Worlds

Posted on by
16

Yesterday, I held my own Twitter experiment, sort an homage to Orson Welles and his War of the Worlds radio broadcast. I tweeted all day as if I were outside Walmart, then Target, waiting in line for Black Friday deals. I was not there. I hope I never wait in line to do that – never say never. Twittering was my way of counteracting the forces of Black Friday.

RIP, Creative Genius

I am tired of hearing about Black Friday (BF). If the Charlie Brown special were made today, half of the show would be about Charlie and his friends waiting outside a store to buy BF deals. Not only that, BF deals started Wednesday this year and some stores opened on Thanksgiving night (Toys R Us). This year the amount of coverage got under my skin.

I’m not here to give a lecture. My house is full of gadgets. But I feel manipulated by these BF ads and companies and the compulsion to buy. Not only that, it feels like our economy is held hostage to the peaks and valleys of how much or how little we buy. Worse, and this is where I agree with storyofstuff.com, our happiness is tried to our consumerism.

So, I tweeted all day and had a really good time doing it. I laughed at my own tweets and tried to give hints regarding whether I standing outside of Target – free crock pots. I really don’t know what you cook in one, but my tweets were a crock so it seemed like the perfect product to give away.

Thanks for the tweeted replies. Some knew I was making it up; some came close to wanting to call me a loser for standing in line, which may be true about being a loser, but I wasn’t a loser standing outside of Target with a coupon for a free crock pot. However, if they did give away free crock pots, I probably would stand in line for one. I’m sure it’s the best way to cook squirrel. God knows grilling it doesn’t help kill its gaminess.

Why doesn’t CF make us stress resistant to life’s troubles?

Posted on by
5

Cystic fibrosis stress is difficult to describe to others outside of the disease’s reach. But it’s not that nuance of stress bothering me tonight, though when I think of going back to the hospital one day I feel like an ex-con who says he’ll never go to prison again. They’ll never take me alive. Now that feels stressful.

Where's the hospital bed in this ICU picture?

Tonight, the part of CF irritating me revolves around being stress resistant to non-CF related stress. At one point in my life, in my 20s, I had that power. I didn’t care what happened and somehow survived my own consistent stupid acts of defiance.

I want that feeling back.

Cystic fibrosis should come with superpowers when it comes to fighting work and life stress in general. But it doesn’t. I worry about too many things and I feel I shouldn’t. CF should protect me from the bullshit. Perhaps, it helps reduce stress a bit. After the last two embolizations, I don’t sweat the small stuff at work as much because I don’t know how long I’ll be able to work. I’m in extra time now. I don’t get too bent over trivial matters.

That’s not to say I’m not a perfectionist. I care about the work. I just try not to worry about what might go wrong or when something does. There is always a solution. Unfortunately, not everyone has spent a portion of their lives in the hospital. My co-workers stress over details that will never make an impact in life, or they’re afraid to take risks. Fear overwhelms them at times.

Why can’t I ignore all of these stressors when I know today might be my last? Well, bills have to be paid; daily life must be lived. I need health insurance. My life is not the romantic vision of dying with the mantra of  “you’ve got two months to live so go crazy and take care of your bucket list.” It’s a constant internal back and forth of living for today and planning for tomorrow. Blow all your dough today and you’ll be poor tomorrow.

Life would be much easier if when we were born, we knew exactly how much time we had. I’d like to know when I have 60 days left to go. Watch the partying of all time begin – I wouldn’t worry about a thing. Not one thing. That is until day 61 rolled around and I woke up flat broke, addicted to coke and sleeping in my wrecked Porsche 911 stuck in two feet of Pacific Ocean surf and sand. Worst of all, I’d still have CF.

Life is all about the correct timing of one’s recklessness, isn’t it?

Angry Birds, Californication, used cars and work

Posted on by
9

[Please excuse typos. I’m tired from doing all of the things in this post.]

I’ve been living in the CF netherworld of not feeling great, but not feeling bad enough to go in for IVs. It’s like riding a mediocre wave for as long as you can before you fall into the water. I’m on colistin, so it’s not surprising that I only feel “okay.” When I go back on Cayston in December, which was planned that way, I’ll feel better. This is the time of year where I do my best to stay out of the hospital but know I’m one bad cold away from an infection. I wash my hands a lot, give people knuckles instead of a handshake, and touch door handles with my shirt sleeve. Oh, and I don’t kiss supermodels because who knows where they’ve been. I ain’t taking no chances this time of year, crazy tall lady who wants to break up my marriage.

Speaking of my obviously better half, my wife got me hooked on Angry Birds, which may not make her my better half right now. I’ve been resisting games on the iPad because they’re productivity killers (have you seen many blog posts lately?) She downloaded the game on her iPhone. I followed. Holy f**k. This game is like crack cocaine – not that I’d know what crack cocaine is like, but my supermodel friends tell me about it all the time. Angry Turds, as we call it sometimes to great laughter from my daughter, mirrors crack in two ways. First, you think you’re only going to play one or two scenes or puzzles or whatever they call them. Nope. You play 10 puzzles. It’s hard to stop. Second, you lie to yourself that if you start you can stop in five or ten minutes. “I can handle it. I can play at 11:45 p.m. and be done at midnight. Liar, liar. Argh. I feel like a junkie.

When I haven’t been playing the birds game, I’ve been watching the third season of Californication. I watched the first two seasons in the hospital and got hooked. (Lots of talk tonight about addictions. Nothing like my OCD maxed out.) Great show. California is a cool place to live if you’re a stud book writer. Or you live by the beach. Otherwise, it’s full of foreclosures and polluted air.

The process of buying a used car bites. Plain and simple. It’s not fun. It takes a ton of time to find the right car because unlike the stupid commercial that showed 40 red Mustangs pulling up to a driveway with one staying – the perfect car – it’s quite the opposite of having fun. It’s “let’s drive to faraway places to look at cars that don’t match the description in the ad.” Occasionally, it’s cool to see new parts of L.A. I drove to an area north of Sunset Blvd the other day. Old-school L.A. with narrow streets and no parking and big houses wedged together that cost millions of dollars. Very nice. I can only imagine the weekends in that area. A couple of Brits I know would party hard and wake up in a pool the next morning.

Work, work, work. What can I say. It’s work. I’ve been getting rush projects one after another, including the large one I had to keep moving while I was in the hospital and technically not allowed to work. But they didn’t mind me working because the work had to get done. Even not working the last week in the hole didn’t kill my deadlines. So there work gods, I got one over on you. Or did I? Who got hosed here? Nothing like pushing off all of your scheduled projects for ones that are “hot” and “urgent.” Madness, I say. Madness.

That’s it. That’s the update. Time to go play Angry Birds before I go to sleep. I can handle it. I’ll only play one puzzle. Just one. Yeah, that’s right. When’s the intervention?

Knock, knock. Who’s there?

Posted on by
12

It’s easy to explain the horrors of hospital stays to friends. Most have had some experience with them and have a respectful fear of their many needles and tests and food fit for no one. But I have a harder time explaining the daily grind of treatments, boiling nebs, dealing with insurance and holding the door closed on the dark and hopeless thoughts banging away, trying to get in. If CF were only having to deal with hospitalizations, I’d feel like a king. How nice would that be not having to deal with the everyday routine of the disease. Even the constant drone of the compressor and neb hiss eats at me. Three times a day. It’s confining and the same, like wearing wearing a plaid three-piece suit everyday. I long for new drugs and inhalers just to break up the routine.

Here’s a rough sketch of the daily inhaled gears turning:

Morning: Wake up. Inhale Xopenex, two hypertonic salines and inhaled antibiotic.

Afternoon: Inhale Xopenex and two hypertonic salines (and inhaled antibiotic if a Cayston month).

Evening: Xopenex, two hypertonic salines. Pulmozyme. Inhaled antibiotic.

Now repeat this 365 days a year, add mustard, onions and jump out the window.

That’s the skeleton of my day of breathing treatments, which also includes Vest time and a myriad of other drugs at set times. It would be even worse if I was forced to eat hospital food every day – the same meal for breakfast, lunch and dinner. (McGriddles for breakfast don’t count, @Seanset. They’re special) Something tells me there’s an Edgar Allan Poe story here about daily CF treatments causing madness. For madness doesn’t feel far away at times.

Knock, knock, who’s there? CF you. “CF you” who? CF you go crazy from doing inhaled treatments three times a day.

I’m not sure there’s a way to describe the daily grind to others. They’d need to experience it for themselves to understand and appreciate it. I’d like to see how long non-CFers could go, how many days in a row they could fire up the compressor, stick a neb in their mouth and inhale for an hour at a time, three times a day, seven days a week. I can only imagine they’d crack after three or four days and beg to stop and return to their normal, treatment-free lives, especially during the late-night treatments when sleep sounds good but must be resisted. (I have miles to go before I sleep. I must fight the urge to crash and skip a treatment. I’m being tested. Must fight on. Must fight on. One more treatment. And another. And three tomorrow. AAAAAARRRRRRRRRRRRGGGGGGGGGGGGHHHHHHHHHHH!)

Knock, knock. Who’s there? One day. “One day” who? One day I’m going to drag cystic fibrosis behind my VW van from L.A. to New York. That’s who.


Playing nice in the sandbox – being Swiss at work

Posted on by
6

[adult language]

I miss the days when I used to travel light. When I threw clothes in a bag and drove away without six pounds of meds and compressors and nebulizers and CF-related paraphernalia. Luckily, this week’s business travel didn’t include an airplane flight where TSA agents’ main objective is to embarrass me by having me remove everything from my bags. I hate airplanes and air travel for so many reasons now. But again, I only had to drive this week. For that I’m thankful.

I had three days of meetings, many of which I had to lead. If I had a favorite moment it was the opening when we went around the room and introduced ourselves, stating our position, years of service and other standard information, ending with a question: “What’s your favorite vacation spot?” Lot’s of possible answers to that one. Islands and Disney were the most popular. I would have liked to answer “the hospital” because that’s where I spend most of my time outside of work. However, this would have raised eyebrows and revealed my secret identity, which is now known in HR but not to others.

I dream of winning the lottery because I’d live in a large house with a big yard, donate to CF research, and not worry about money and health insurance.  I also dream of winning so I could stay at my job for a few weeks and say what I want to say. That’s right, I wouldn’t quit right away after winning. I would stay. But I wouldn’t want to hurt anyone with my words. That wouldn’t be sporting. Rather, I would like to quit playing the dance of being Switzerland, of using the most neutral of phrases and replies. I’d like to be blunt and not worry about making people feel like their idea was the best I’d ever heard. I’d like to hit a buzzer and say “average idea, you can do better.” Or tell my bosses that micro-managing sucks and we have a proofreader for catching typos. Management’s job is to avoid icebergs in our path, not visit the engine room to fix a spark plug.

I’d tell the guy who sits back in our meetings and looks for things to criticize to shut the fuck up. I’d tell him I don’t want to hear anything negative and to keep his pie hole shut for the duration of the meeting. End of story. If he wants to say something positive, great, speak up. However, if he wants to point out that under the harshest of deadlines and editing materials while I was in the hospital, that I could have used a different event on our timeline, well, he can kiss my ass. Because in the scope of life, it makes no difference. And perhaps that’s what irks me more than ever as my life nears its conclusion – so much of the time we spend at work is spent on trivial discussions. It’s not that the work doesn’t matter, it does. People matter. It’s how our time is spent that both fascinates and irritates me. In our quest to play nice in the sandbox, it takes longer to get to where we need to go.

And that goes to my lottery fantasy – saying what we want to say, not being mean to be mean, but stating it as we see it. Not being afraid to debate, or of healthy conflict without the constant fear of losing one’s job.

I’d also like to tell those who think that they deserve special recognition every time they do their job or work an extra 15 minutes at the end of the day that they are really doing just what they get paid to do. No one hired them to be average. Imagine interviewing for a job and stating that you’re going to do average work and want recognition every time you do great work. You’re paid to do a great job, asshole. Do it without the need for constant recognition that you’re doing your job well. The coolest cats, men and women, are the ones who do a great job and keep quiet about it. They don’ t need daily accolades. They have their own internal scoring system.

I think of my daughter and hope that she will work hard in life and find a career that makes her happy. I hope it’s one where she feels free to say what she wants to say. And I hope that opportunity exists by the time she grows up. I’m not sure it will.