Category Archives: cystic fibrosis

Shallow thoughts from an idiot purple sheep

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[WARNING: Adult language, themes, and childish thoughts – a bad combination. Read at risk to your mental health.]

The big monkey pays a visit

Life disguised as King Kong took its giant monkey hand, paw, whatever it’s called because I’m too lazy to Google it, and picked me up by my ankles and dipped me headfirst into a gas-station toilet. Then it slapped me to the ground like a wet fish and called it a head cold.

I have a bad case of mascot head, big and stuffy. My chest is congested, too. It’s not looking good for staying out of jail. I should know better than to go to the mall in March without a space suit – and one for my daughter, too. The term for “Mall” in my language is “Casa de Virus.”

Read the instructions on the soup can and follow them

Soups don't burn people, people do

I read the instructions to cover the soup bowl and let it sit for a minute before removing it from the microwave. But I didn’t let it sit or stay covered – hence the accurate title of this blog post. Instead I pulled it out and peeled away the plastic covering.

The escaping steam burned my middle finger, bad. Bad enough to override my mental ability to turn pain into pleasure, which makes me sound like I’m calling 900-numbers nightly to speak to dominatrices. It’s not nightly, just once a week, but even this level of pain overrides my amazing ability to withstand pain, which was honed by dozens of hospital visits and the hospital workers who think smoking crack and showing up to work is a good idea.

And, if Lizippy’s brilliant theory of “Google-search-word pervs” is true, I should get some new readers with this post. Welcome, slaves. Now sit down and shut up and beg for your beating.

“Leather-whip to the ass” fans aside, I will be borrowing my wife’s Vicodin, another key search word, so I can once again flip off Walmart when I drive by it. My thanks for selling me $5 rubber-hard pillows that make my head bounce up and down when I’m sleeping. Or, is it my rubber neck? Hmm, I did look at the accident on the freeway the other day.

Making a correct decision doesn’t mean a warm fuzzy feeling in return.

Yes, I made the correct decision not to go to Jersey yesterday. Still, today I stayed away from the knife drawer and was thankful California has a waiting period for handguns. Not a good day. The work team is in NJ and I’m not. Once again CF isolates me from the clan . . . of the cavebear – (more disappointed Googlers). CF has a way of doing that – for my entire life. I’ve always felt apart from others, someone who doesn’t belong, a purple sheep.

So, between my cold getting worse and not being able to travel, I’ve done a fantastic job of feeling sorry for myself today. I want a gold star and a meaty rib from the Woolly Mammoth we killed together, as a work team. We worked together to kill it. Go, Team Cavebear.

Guys, why am I by myself? Hello? Anyone? This cough isn’t contagious, you stupid fucks. Come back here.

Scare the people who knock on your door – if they’re not kids selling cookies or chocolate bars

Someone came to my door today selling steaks. Steaks? Are you f’ing kidding me? Who thinks of something like that? I know who – the guy who passes out on the couch with his hand in the front of his jockeys after drinking the entire 12-pack of Schlitz. Yes, my dad.

A dim Christmas bulb blinks while he’s sleeping it off, and he dreams: “I can sell steaks. I can sell steaks door to door. I’m a fucking genius. No one sells steaks door to door. I’ll be rich just like the person who glued sleeves on a blanket.” No, you won’t, Dad, because they sewed the sleeves on. My apologies to those Googling “selling steaks door to door,” but not to my dad.

The next time someone comes to my door selling shiate I don’t need, I’m going to put on my McDonald’s bag, or better yet, wear a bandanna, western bank-robber style. I’ll say in my happiest of voices, “I have highly contagious TB,” and ask them to feel my forehead to see if I have a fever, just like my mommy did. I’ll ask them if they’d like a whip to the ass, too.

Then I’ll call Mistress Honey with the news that some salesman who looked like my father dropped a box of $2 llama steaks on my porch. She’ll be angry because I’ve been bad again. Yes, I have.

My head cold goes south; I stay West

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Everything was going fine this morning preparing to leave for my trip until I coughed a dry cough – red alert. It was a clear sign my cold had crossed the imaginary barrier of my throat and entered my chest – chest cold, red alert.

The monkey tossed a wrench. But was I reading the sign correctly?

I don't know why, but this photo seems appropriate. (Creative Commons: soldiersmediacenter)

I went through my routine. And when the driver knocked, I hugged my wife and left. And the first thing I did when I got in the car was take a Xanax. But it was too late. Each suppressed dry cough was like someone shaking me to wake up.

The closer we got to the airport, the greater the thought of “turn around” became. Turn around. Turn around. Go home. Do not go, turn around. TURN AROUND. BAD THINGS WILL HAPPEN.

At least a dozen scenarios played through my head of what might happen – what I would do when I got to New Jersey and this chest cold turned worse. What would it be like to be in the cold weather, a hotel room, sick? What would it be like to have a dry hacking cough on the plane and have people stare? What would it be like to go through security and have to open my bag of CF paraphernalia and explain it?

How would I get home? How would I get home?

Too overwhelming, go home.

As we exited the freeway, I felt warm.  And as we got closer, hotter. When we were about a mile away, I knew I couldn’t get on the plane. My face was flush, my heart beating in an uneven drum beat – hard beats, ready to release blood into my lungs.

When the driver pulled up to Terminal 1, I told him I was having a panic attack and couldn’t get on the plane. I asked him if he could drive me home or send another car to pick me up. He was very nice and said he could drive me home. But he suggested we wait five minutes, take a deep breath and see if I changed my mind. I called my wife and told her I couldn’t get on the plane. I had made my decision. No sense waiting five minutes.

The driver took me home. I handed him an extra 40 bucks. And in the dark of morning, I wheeled my suitcase into the house.

Now had I written this post this morning, the title would have been: This blog post written by the world’s biggest idiot. I felt that way for making the decision not to get on the plane. Wimp, wuss, were a few of the words I used. However, the cold worsened throughout the day. I’ve had a dry cough and been out of it, tired, groggy from the stress and the virus.

But, for once, I made a correct decision. An uncomfortable decision, but the right decision. It didn’t feel like it at the time, but it does now. I’m fighting a chest cold, which may put me in the hospital. I have no doubt had I gone, I would have been in deep s**t with this thing.

So, the part of me that felt like a complete wuss at the airport for not getting on the plane, now feels good because I made the difficult decision not to go and to ensure I was in the best position to fight the cold and, with luck, stay out of the hospital. That is yet to be determined. It’s 50/50 at best right now.

Here’s my last thought tonight: I hate cystic fibrosis. It can kiss my ass.

Packing Day

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I miss the days when packing for a trip took 45 minutes, not all day, and didn’t feel like defusing a bomb, hoping not to leave anything critical behind. I did exactly that in Hawaii a few years ago when I showed up without eFlow nebs. I felt ill when I realized they were sitting on the counter back home. And our trip budget took a hit with overnight plane delivery on a Sunday. (Yes, chocolate-covered macadamia nuts can sustain you for a week, but you’ll never eat them again.)

Count 'em out, ride 'em in, Ride 'em in, count 'em out, Count 'em out, ride 'em in, Rawhide!

There are a lot of meds and devices to keep track of, and it’s taking all afternoon to round them up and triple check them.

We’re officially on East Coast Time now in my house. Dinner will be at 4:30 PDT today. Bed by nine or ten, not midnight. Transportation will be here at 4:45 a.m. I have to wake up at 3:30 a.m PDT and do meds.

I started cipro today. No streaks, but I’m not taking any chances. I decided to fire the gun at the enemy first and not wait for it to surprise me – yes, I could be President one day with that preemptive skill.

Theme of the day: Travel light. I bought a new, smaller suitcase at Target, and I removed all ballast from my backpack: coins; old receipts; individually packaged hospital meds I never took; and limited clothing.

Part of my green initiative is wearing the same clothes for a longer period of time before changing and washing them. I wear the same T-shirt, shorts and underwear all week. Remember, I can go three weeks in the hospital without showering. So, wearing the same clothes for seven days . . . piece of cake. The world can thank me in a few years for all the detergent I saved from the ocean, and the energy to run the washing machine and dryer. Just don’t sit next to me on day six.

I fly to AZ first. I chose the close layover so if something bad happens on the plane, I can drive home or go to a hospital there. I’m comfortable with Phoenix and know my way around. It’s also not far if my wife has to travel to see me.

With luck, my next post will be from a hotel in NJ, which is what we once code named the hospital when my daughter was young. “Daddy’s in New Jersey for a week.” Now, it’s where I’m really going, though given the choice today, I might choose the local hospital. At least I don’t need to board a plane to get there.

No one lives forever

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Par-a-noia strikes deep
into your life it will creep
it starts when you’re always afraid
step out of line the man come and take you away
– Buffalo Springfield

I look better in black and white

I have a plane reservation for Monday. I don’t remember how long it’s been since I’ve flown. A year? Over a year?

Travel with cystic fibrosis hasn’t always been kind to me – hemoptysis over the Atlantic Ocean, German hospital; collapsed lung over Texas, chest tube and chest tube redux; and half-a-dozen or so travel episodes of coughing up blood, even in Hawaii – how screwed up is that?

And recently, I’ve had two embolizations and unpredictable moments of bleeding, sometimes due to exertion.

So, the thought of getting on a plane Monday scares me. It’s fear, pure, simple.

It bothers me to realize I’m afraid of something – deeply afraid.

Bad things happen when I travel.

If my lung bleeds on the plane, how much will it bleed? Will I be able to walk off the plane? Or, will I be carted through the airport to a waiting ambulance, my shirt Rorschach-red, people staring?

My crows fly wild, agitated, noisy.

The icing on the cake of indecision is the head cold I’ve been fighting with nasel irrigation, tea, vitamin D and M&Ms. The decision may not be mine to make after all. The cold may force me to stay home in what I like to call a “career-limiting move,” as if I had a career. But I have job, with health insurance. I’d like to keep it.

There is also the voice inside I like to call the “Train-wreck Watcher.” It gives me courage to go, to get on the plane, and see what madness might play out – to witness a possible derailment: a hospital in NJ; coughing up blood in front of my co-workers; or dealing with breath-taking stress and feeling trapped.

Train-wreck Watcher says: Is there anything the disease can throw at you that you cannot manage?

I don’t know. Is there? Roll the dice, sissy boy. No one lives forever.

Letter to my daughter, 03/22/11

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Dearest Daughter,

We’ve spent two days together while Mommy is away on business. Thanks for making my life easy, so far. But there’s always tomorrow to change course and wake up in a foul mood and fuss about putting your shoes on. We’re not home free yet.

I do, my wonderful daughter, need to share an observation with you I noticed this week: You’re Fox’s child, not mine. Yes – you are.

This became very clear to me the first morning when I had an epiphany and saw your fox tail showing.

Here’s how I knew: How many years has Mommy brought you a heated blanket in the morning, carried you to breakfast, and sat you on her lap feeding you?

Hmm, I wonder?

Then, when she’s away for a few days, and I’m here, you manage to get up without an alarm clock, put together your own breakfast, eat it in record speed, and have 30 minutes to get dressed and ask if you can play Pokemon.

And no blanket or sleepy-head look? Very interesting indeed.

You see, I now know your secret – you bamboozled your mother! All these years and you kept the act up. Well done, my child. Well played, young lady. Well. Played.

I will keep your wicked little secret when Mommy gets back, and let you have your pack-mule moment of being carried to the table. It makes your mother happy, though she’s having a hard time carrying you now. How old will you be when you exceed the maximum weight limit for that ride? I’m sure it will be sad for all of us.

From this point forward, each time I see her lugging you like a heavy bag of groceries, I’m going to have a huge smile on my face watching you, Baby Fox. Yes, you.

Enjoy your trick, honey, because before you know it, you’ll be carrying your own daughter to breakfast wondering when she got so heavy, and wasn’t she just a baby a few days ago, and where did the time go?

Where did it go?

And you’ll remember, at that very moment, what I once told you in a blog post – you blinked.

With all my love,

Daddy

The Dog Couch

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My daughter tells her friends I sleep on the couch. A couple of parents have overheard her. “Oh, she’s so funny,” they say. “Is your wife mad at you? Did you misbehave again?”

Yes, I misbehaved, ha, ha, ha, ha. I’m being punished.

But not by my wife. I have my buddy CF to thank for my exile.

Cystic fibrosis has given me the amazing superpower to sleep anywhere, except flat on a bed. Give me $5 Walmart pillow and a couch, chair, tub, wheel well of an old pick-up truck, or dumpster full of McGriddle wrappers and I’m good to go.

It’s been over 9 years since I’ve slept prone, even in a hospital. The wonderful tag team of GERD and hemoptysis has forced me to sleep upright on a couch. And that’s what I do, sleep on a couch. But not just any couch.

I sleep on the dog couch.

And a dog sleeps with me. As well as three princesses who keep me warm at night. It’s magical.

I place an old ottoman next to the couch for my legs because the pup sleeps at one end and takes up my foot space.

If I weren’t so cheap, I’d buy another couch. However, this couch has sentimental value. It’s the one my daughter puked on five or six times when she had the stomach flu. Oh, the memories. The special smell. The stains. The trip to the weekend Pediatric ER for a fluids I.V.

How could I ever get rid of it?

I love this couch. And this couch loves me.

Ladies, sorry to keep you waiting. I'm here. Sleeping with me may commence this minute.

Here's my sleeping buddy taking an afternoon siesta. (Does she look familiar, L?)

When life attacks

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I spent yesterday afternoon in the ER – as a visitor. My wife went there because she had the panic attack of all panic attacks and her blood pressure skyrocketed. I wished I could have changed places with her.

I felt terrible that life had overflowed her bucket with lice, my hemoptysis, her crazy workload, and upcoming trip. I realized I was seeing a version of me when I go through anxiety attacks. It scared me because she’s been bulletproof up till now.

What’s kind of nutty is that I had to take a Xanax when she went to the ER because I had a panic attack. It was amusing when the doctor gave her a dose, too, as I was there to drive her home. I smiled because my little pill had kicked in for my pharmaceutical joy ride to the heavens. Sure, Doc, I’ll drive her home. My rocket ship is parked outside and ready to blast off. Maybe we’ll stop at a bar on Mars and knock down a couple of Xanax chasers.

It’s amazing how life and work become so overwhelming and hard to keep up with some days. My sincere thanks to the corporations for ratcheting up worker productivity the last few years. Companies may be right that high productivity is profitable, but they fail to factor in the cost of increased health care expenses. Even my healthy co-workers have problems dealing with the load. Some of them make secret ER visits and numerous doctor visits for their possible stress-related illnesses.

Tomorrow, my wife leaves on a business trip.  I want her to go because it will be good for her. But I don’t want her to go because if I cough up a lot of blood, it’s going to be one crazy time taking care of my daughter. She’ll have to stay with friends or hang out with me in the hospital. “Daddy, let’s go over your symptoms again. From what I can tell you’re experiencing what’s known as a panic attack. Now get over it so I can go back to playing Pokemon?” Okay, I will for you, bossy little princess.

The next three days are going to be like walking around with wet dynamite in my chest, hoping I don’t jostle it. Wish me luck.

CF Bones and Benihana Redux

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It’s all in the bones

“You look skinnier,” one of my co-workers said. I had just arrived at the office and “POW,” in my face. Cream pie, yum. It amazes me when someone comments on how I look when they greet me. I don’t understand it and never will. “Yo, Unknown. Hey, is that a new mole on your neck? I hadn’t noticed it before. It’s gotta be a centimeter in diameter. Wow, look at the curly hair coming out of your left ear. Oh my. And look at that nasty looking suit. Is that lice?”

I’ve heard comments about my weight my entire life. They used to throw me into a tailspin and send me to the vitamin store for a jumbo can of weight gain powder. Now they don’t bother me as much because my skin is elephant-thick. And my scale screams when I step on it these days. But sometimes people say “thinner” because of my CF bones and the look CF etches on my face. What my co-worker probably meant to say is “you look sick in the face,” which makes me think a bag over my head at work would be a good idea. But later that night, when another coworker told me I was looking well, I got confused. Does anyone else get this many comments about their looks? Supermodels need not answer.

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Don’t pick up the phone when he calls

Why does every local work dinner I go to culminate in a trip to Benihana? What is the allure of the place? Instead of my thoughts on it tonight, let’s hear what Stacey of Confessions of a Cyster thinks of Benihana. She gave me specific instructions to give her credit (in a funny, charming way like only Stacey can do).

You have to constantly act impressed with the stupid knife-slinging show…then ohh and ahh at the onion volcano.  Seriously, how many onion volcanos do you really have to see in one lifetime.  All this while trying to avoid being in the path the one time they slip up.  Oops, everybody makes mistakes, right?

Exactly, Stacey. You’re right on. Nothing spoils a good night out like a hibachi knife to the chest.

I once posted this photo for CG. It's good luck. So, perhaps the screaming chef shouldn't knock it over. I don't want "Brady Bunch finds lost Tiki statue in Hawaii" bad luck. Sorry, Lucky Kitty. Please don't curse or hurt me.

The food was good, but the applause for tossing a few shrimp tails into a hat was non-existent. Suggestion for improvement to the Chef: toss a few flaming shrimp tails in your paper hat, let it catch fire, and run screaming from the restaurant, knocking over the lucky kitty and aquarium as you go. That will earn you the standing O you used to receive in the 1970s when your table was filled with onion-volcano virgins.

I did, however, think Benihana would benefit from Stacey’s constructive feedback. So, I emailed her blog site and home phone number to the Head Chef at Benihana. (Stacey, he wrote back and said he’d like to make you dinner one night. You’re welcome. Enjoy. Your pal, UC.)

Stay happy and wear a Kevlar vest when eating out.


Sunday Stories: Anger or CF? and Welcome to Liceland

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Anger or CF? Which came first?

When the SUV stopped hard in the middle of the crosswalk, we and the crowd of families with soccer kids had the “walk” symbol. The hurrying driver realized he’d stopped too deep, a common mistake easily forgiven at that point. But then he looked over at us and decided to compound his mistake and step on the gas and make the right turn. My fuse burned fast. And I added to his mistake by yelling out “Jerk Off” in front of everyone and, I hoped, loud enough for him to hear. My wife looked at me in the way only wives can do, and I apologized to everyone. I meant to say “asshole.” But I caught myself, just not in time to keep quiet. I redirected the impulse and fired off another nicer term for the young impressionable minds, each of whom, thanks to me, asked their parents tonight: What’s a Jerk-Off, Pa? Well, son, that’s someone who yells “Jerk-Off” in public. I don’t understand, Pa? Well, son, let me make it simple. It’s the same as an asshole. Exactly.

In a perfect world, without CF, my wish would have been for the SUV driver to stop, get out, and for me to deliver a beating to ensure he wouldn’t run a crosswalk again with kids present. It makes me wonder if I were “cystic fibrosis free,” would I be blogging from jail right now? Is my anger created by the trials of cystic fibrosis, or not? I believe I would not have the degree of pent-up anger without the life CF gave me, or has taken from me, depending on one’s point of view.

Welcome to Liceland. Now go home.

If my wife owned a flamethrower, our house would be a pile of ashes right now. She would let rip with the weapon and scream, “Burn in Hell, lice, Burn in Hell,” until there was nothing left. My daughter and I would stand watching, silent, fearful we might draw her attention and earn a good singeing of our hair as a precaution.

This weekend has been difficult on my wife, who has the strength and courage of a frontierswoman. But even lice can break the strong. She’s cried several times from being overwhelmed. She is due. Her chromosome-challenged husband has mild hemoptysis and may be hospital bound. And, our house, garage and a car are filled with quarantined black plastic bags of anything non-washable. “Can you fit in one of these bags,” she asked me. I kid that she did, maybe. Yes, I kid. Stop it, Fox.

The bug bags will be here for the next two weeks (she wants four weeks) while the eggs, if there are eggs,  hatch and die. My fear is that my wife will have done all of this work to eradicate the lice, then my daughter will go back to school Monday and be infected again.

We emailed the school Friday. They’ll do an inspection Monday. What’s interesting is how many families don’t tell the school when their kid gets lice. We discovered this over the weekend: “Oh, yeah, so and so had lice, and so did they and them. Oh, and them, too.” Yet, we don’t remember the school mentioning them or they. Oh, well, what can you do?

So, we continue to vacation in Liceland and abide by the strict laws of the country. We strip down to our birthday suits before entering the house, then receive a chemical shower, a body-cavity scan from TSA workers, and fresh white space suits. In my Darth Vader voice: “Lice, I am your father.”

We’ll kick the lice problem, one day. Or soon we’ll be living at the Holiday Inn for a few weeks until we catch bed bugs and have to move to the moon, which is bug free I hear. But who knows? Perhaps here is a louse living there that burrows into your ear and eats your brain, which, for me, makes the moon the perfect place to live.

Lice, Blood and Walmart – All Three Suck on a Friday Night

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It’s 12:39 in the morning. I’m typing this with lice shampoo in my hair. I was last to go after my wife spent the last eight hours combing lice out of my daughter’s hair and her own. Oh, and cleaning the bedding. I don’t have lice because I sleep on an old green couch (another post), but I’m taking one for the team – just in case I have the invisible kind of these little buggers. Looking at my wife comb them out of my daughter’s head made my head inch.

I spent part of the night at Walmart in the longest line you’d ever want to see when you’re trying to buy four $5 pillows (I need two) and three $5 movies for your mother-in-law who came over to man the washer and dryer. I almost walked out when the woman ahead of me decided she didn’t want 4 of the 47 items she’d purchased and the cashier had to re-ring the entire order – minus the detergent and jumbo box of Butterfingers. She kept the two dozen cans of cat food. I’m thinking she’s the type you see on the news with 200 cats living in her house.

I gutted it out and paid. Give me a medal, please.

Then I coughed up some blood. Not a lot, but enough to rock my world. I wrote the doctor and told him if he didn’t find a way to fix this, I was going to jump off the hospital roof next time. I didn’t say quite that. But I was thinking it. That counts for something.

Hold on. The timer is going off. I need to get the shampoo rinsed out before it melts my head like it’s made of wax, which isn’t far from the truth.

[wait for it, wait for it, wait for it.]

I’m back. That sucked. My wife washed the poison shampoo from my scalp. I’m hoping my hair doesn’t fall out while I sleep. I wouldn’t be surprised if it did. Though I think it’s more likely I’ll wake up to find lice the size of mice playing on my chest. I’ll tell them: “I’ve coughed up scarier bugs. Now run along.”

That’s all.