Author Archives: unknowncystic

61-second Rant: McDonald’s Caramel Frappé

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Every day I order my McGriddle, I am bedazzled by posters of the car-a-mel frappé, with its drizzled caramel and brain-tissue-like mound of whipped cream. I sit idling in the drive thru in awe, wondering who needs something like this to get going in the morning. Willy Wonka?

McDairy Queen? Photo rights are mine.

Caramel frappé images haunt me in my sleep.

At what point did morning coffee morph into morning dessert? My grandfather, who drank Folgers from a Mr. Coffee machine every day, wouldn’t have put anything called frappé near his lips. He didn’t need a dessert to get rolling in the morning. He drank real coffee, not a Dairy Queen treat disguised as coffee.

I feel bad for anyone who has a weight problem when I see products and advertising like this. The subliminal and overt messages can crush anyone’s willpower over time.  The caramel frappé exemplifies the excessive and unnecessary caloric intake that has infected our food supply.

Science tells us that we eat dessert last because that’s how out taste buds work. We eat meat, broccoli, and potatoes first for a reason. Sweet foods come second when our taste buds need a jolt to get excited enough to eat more food. Problems develop when dessert becomes our main course three times a day.

We will never cure our healthcare challenges until we say no to caramel frappés and other common foods pumped up by sugar steroids. I’m not suggesting we close the McD’s and Dairy Queens of the world. I love cherry Dilly Bars like my yellow lab loves carrots. I’m asking that we draw a line in the sand of our food supply. Leave the sweets to DQ and the Big Macs to McDonalds; keep coffee black, and whipped cream and caramel on sundaes.

And never mess with the McGriddle.

Stay well.

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Monday Musings – Tightrope Walking and Cystic Fibrosis

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What would it be like to be a tightrope walker?

Take one of the most famous, Philippe Petit: What’s it like to stand that high in the air, suspended between two buildings, knowing that you are completely alone? Should you lose your balance, no one will be able to help you. You can’t Google a solution or tweet your tweeps. Your cell phone rests out of reach.

Tinkertoy Tightrope Walker by moi & daughter

It’s you and the wire.

And that’s the obvious connection to cystic fibrosis – those moments when it’s you alone on the wire. You’re walking the tightrope with no doctor, no friend, no loved one, no tweet, no phone. It’s you and the disease connected and suspended without a safety net.

It doesn’t matter whether you have CF or you’re the parent of a CF child. At some point, you have a moment when you find yourself out there, above the street, deep in thought about your predicament. What can I do? What do I do?  The decision rests squarely on your shoulders.

But there is a deeper connection of tightrope walking to CF. It’s that moment when you look down and rediscover the true situation you face. You remember that you spend three hours of your day doing treatments and coughing up mucus that makes others jump back in disgust, and you take more drugs in one month than most take in a lifetime. Or, when you arrive at your hospital floor, they welcome you by name.

Some days, it is best not to look down at the street below. You can’t turn back, and looking forward doesn’t help either. The wire is long and platform ahead shrouded in fog. Surprises, wind, and close calls line the way. Your past experiences play back in your head, especially the ones that do not help.

How did I get here? Is this really my life? What do I do?

So, what do you do? Yes, you can take one step forward at a time. We all do that. However, there is another choice.

This is where Petit’s actions on the tightrope over New York City provide a possible course of action – lie down on the wire and look up. That is exactly what he did while suspended above the streets of NYC. He looked up, not down – the opposite of one’s instinct at those heights. And that is the true connection of the tightrope walker to living with CF – sometimes it’s best to live in the moment and not worry about what’s below, behind or in front of us. Block it all out and look up at the sky.

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Saturday Funhouse – Four Things You Didn’t Know About CF

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Win one for Unknown

@seanset requested a Saturday Funhouse post today. So, as it’s Saturday, its seems like his timing is on the mark. Plus, next Saturday’s post will be a recap of Team USA’s thrilling 2-0 World Cup victory over England. Go Red, White and Blue.

Let’s get started.

The Internet provides a great deal of information on cystic fibrosis. You name it, we discuss it. However, some facts get lost in the sticky web of the Internet. So, I cracked open the archives of Cysticpedia today and dug up the following facts about CF that many may have missed. All true, BTW.

75 cents per load

Vest invented by a mom? One Saturday morning, Mrs. Jones of West Palm Beach FL found her young son, little Unknown, sitting atop her old, out-of-balance, vibrating Kenmore washing machine. Cute, she thought, until she noticed the secretions everywhere. She told friends the story at a dinner party that night. One of the dinner guests was the engineer who went on to invent the Vest. Coincidence? To this day, grown Unknown prefers the unbalanced, bouncing washer. True.

We have alien DNA. If you know the story of Superman, then you know he has super powers on Earth. We CFers are aliens on Earth, too, but our powers are neutralized here. However, on our home planet, only people with our unique combination of DNA are super and can fly. And our mucus is a weapon that can eat through steel and take down super villains. Oh, and we live to be 1,000 years old and never get sick. Where’s the ship that takes me home? Hello, Cyslandia? Can you read me? Beam me up, please.

Just like the candy ones I used to smoke. My parents let me smoke candy cigarettes when I was growing up. Now you know what I was up against, don’t you? Which is why I was dumbfounded to discover this controversial new invention scientists are working on. It’s an eFlow-like nebulizer that looks exactly like a cigarette. This way we can do our treatments in the car and look just like smokers on a commute. It also helps us explain our coughing at work. “Maybe you should give up the smoking,” our co-workers will say on their way to lunch, as we stand outside the building smoking our TOBI Lights. “Yeah, kiss my ass. I’ll live to be 95 because of these,” we’ll shoot back, smiling, knowing the truth. At least people will stop thinking they can catch something from us.

Evil spirits begone

Blow this. Some demented MoFo invented the Flutter a few hundred years ago as a device to cure witches and those possessed by evil spirits. When anyone was suspected of being possessed by an demon, they were forced to sit and blow the evil out. It lost its popularity because it was a terrible spectator sport watching someone’s face turn red and puffy until they passed out. Instead, torturers turned to drowning witches and those possessed, as it provided the excitement the crowds desired. And it sold more cotton candy and rats dipped in chocolate. Still, the torture lives on in my house every day. “Out with ya, Green Demon from Hell.”

There you go @seanset. Just for you.

Stay well.

Letter for My Daughter – 06/03/10

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Dearest Daughter of the future,

This post goes down as my most frustrating to date. Argh. I’ve been struggling with it, wrestling it, for weeks. But I feel better when I write “argh,” which I’ve done twice now.

Let’s move on.

I apologize for being a failure. Or, at least for not living up to my full potential.

Everything was there for the taking. All in front of me, a buffet of opportunity, waiting to be placed on my plate next to the mashed potatoes of good fortune. The books, school, a different path, and I took the one most traveled – the easiest one, well worn by others lacking direction. I’m been in recovery mode every since.

Was I really the person who got involved with those people? The ones who lied and made bad choices.? I was. Yes. That was I.

I ventured out on my own at 18, CF warping my mind, and no guidance to help me mash down my own path in the grass. It’s no excuse. My intention isn’t to be cryptic. It’s hard to relive my mistakes. I don’t recognize myself in my past actions. How could I have shown such poor judgement and done so many stupid things? Argh.

I told you that’s it okay to make mistakes – that’s how we learn. The key is not to make the same mistake twice. I have an asterisk next to that advice now.

Call the dogs, they'll clean it up.

There are mistakes you can’t make in life. They are mistakes of great importance with irreversible consequences. When you’re 16, 17, 18, your brain will feel as mature as you think it will ever get. Wrong. Remember that. You’re wrong. That’s not going to happen until you’re around 25, or in my case, never.

What’s really ironic is how I was fearful of making mistakes that could have had a huge upside or reward in life and fearless when it came to actions with huge downsides. So, when your friends ask you to go smoke something behind the gym, know that it is a mistake you’ll have to live with forever. For f’ing ever and a day. Avoid it.

My message today: take risks, make mistakes, but keep an eye on the up and downsides. There is potential embarrassment, and there is what keeps you from achieving everything you’ll want later in life. I chose the latter when I should have chosen the former. Embarrassment may make you feel like dying at the moment, but it is fleeting and makes for funny blog posts for your kids. The other stuff will haunt you for life.

Choose your friends like you once chose your Pokemon – pick the good ones. And don’t follow bad ones into dark places. You’ll spend your life clawing your way out. And worst of all, you’ll never forget your time there.

With love. Take care of your mother. No one loves you more.

The Post I Could Not Write Today

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The daughter of my friend @seanset joined Twitter today. This situation, in my warped mind, opened the door for all kinds of fun and pranks at his expense. Oh, what I had planned. The title of tonight’s blog was going to be “Five Tweets @Seanset never wants to see from his daughter.”

I can say that they were quite silly and would have sent @seanset reaching for a pint or two. But something funny happened on the way to that post. It hit me that here was his daughter, 19 years old, enjoying Twitter with her father. I wasn’t speaking to my father when I was that age, and haven’t since. And I thought of all of his tweets about his three daughters, the love he’s displayed for them, and the photos he’s shared. The miles he and his wife have logged taking care of them.

And I couldn’t do it. I have too much respect for this man who lives an ocean away.

One day, I’m going to walk into a pub in England, place a few pounds on the bar and buy him and my other English friend @onlyz the drinks of their choosing. I might even watch some cricket with them. Okay, maybe the cricket part is a stretch. I’ll watch soccer. You don’t need a 500-page rule book to understand it.

I also know that his daughter’s real tweets will get him in the long run anyway. That’s what daughters do. I just have to be patient and pick my moments.

I will share one fake tweet from his daughter. It’s the one that would shock him the most.

Dad, eloped with @unknowncystic. Made huge mistake. Send plane ticket. Bag on his head for a reason. Fugly. Talks to invisible fox. #ohshite

Stay well.

60-second Tuesday Rant – My Bucket, Medical Bills and Stratego

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My allergy doctor told me I have a bucket that holds all of my medical challenges. With CF, he said, my bucket is close to full every day. And, it doesn’t take much or even something physical to cause it to overflow.

Medical bills make my bucket blow like a Vegas water show.

I feel embarrassed that I drain the system to the tune of four hospitalizations a year and a potpourri of inhaled and oral meds. It hurts to look at the bills. A panic attack can start just by pulling an inch-thick stack of them from the mailbox. They are reminders of my greatest fear of not having insurance and knowing what I might have to do at that point.

Luckily, I married above my pay grade and my wife deals with them.

But that upsets me, too – the time she spends navigating the maze, making sure we don’t overpay, pay twice, or just plain get screwed. It’s shocking how incorrect the bills are. She has an MBA and an honorary degree in detective work, yet it still takes numerous phone calls to tie the numbers together and figure out what we owe. It also doesn’t help that some bills arrive a year after the service.

What do people without her expertise do? I bet they pay what they don’t owe.

Sometimes, collection agencies harass us for payment while the insurance company and service provider debate who who is at fault for non-payment, each telling my wife to call the other party to resolve the situation. Her phone conversations sound like a lawyer’s, documenting the name of the person, time of the call, and what was said.

Available at Amazon.com

It’s amazing in this age of technology that these problems still exist. It’s not the government who needs to run our healthcare system, it’s Google. Now that’s a company with the communication intelligence to fix the billing errors that take place between the patient, insurance company and medical provider.

I’m not complaining. I’m lucky to have insurance. I just wish it didn’t have to be a game of Stratego every time we open a stack of bills. That’s the part of CF I didn’t anticipate when I was younger – the stress and battle of medical insurance. It’s Stratego come to life with healthcare on one side and my wife and I on the other. Luckily, my wife plays a hell of a game. But it’s a shame it’s not a more friendly game like Candy Land, which doesn’t require a Xanax to play.

Four Bad Ideas for CG’s Poetry Contest (and one from Fox)

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As the three of you who read my recent poem for Cystic Gal know, I’ll never make a living writing poetry.

What you may not know is that C Gal is having a poetry contest. You can enter at this site: http://patientpress.blogspot.com/

I thought I’d enter. However, when I sat down to type some “badass, burning up the page” verse, I didn’t make it much farther than the titles.

Here are the titles of the four poems I contemplated writing:

Ah, the captions that could have been

“Nice Tweets and Ass.” What’s not to love about a poem expressing the joy of Twitter and a funny donkey? That’s what I thought until I realized how it might be misinterpreted. I’m forever haunted by my caveman subconscious. Don’t you feel bad for me now? Though I must say I’m more of a donkey man. Hold it, that doesn’t sound right either? Ah, forget it.

Ah, the good old days

“Two Hot Chicks, a 12-pack of Schlitz and Fox.” I can blame my outer Neanderthal on this one. C Gal accuses me of including these subjects in most of my posts, the first two at least. Fox was the new addition and the one gent who could actually act on a this opportunity for mayhem. I liked the concept, but when I started to write it I realized it was a better fit for a porn site, not poetry. Though I must admit that Fox bowls quite well.

creative common license

Oh, no, Firestone FS507's rolling my way

“Memories of Road-Kill Stew.” A title like this wouldn’t have had a shot on C Gal’s site, which is a haven for cute animal talk and photos. This was supposed to be a loving poem about the actual stew my mama made me when I was young growing up next to a highway. There’s nothing like the smoky taste of meat that’s been curing on a roadway and tenderized by big rigs. Not sure C Gal’s judges would have appreciated it. Had I been able to serve up the actual stew, I might have changed their minds. Though it tastes nothing like chicken stew and tends to come back up the first few times you try it.

Glive it up for Glee

“Glee is very Glay.” Not that there is anything wrong with being Glay, but insulting this popular ladies show would be a quick path to the judging trash can. Better title: “Glee makes me feel happy and Glay.” That would have been a sure winner with the ladies and Madonna fans of the world. Again, nothing wrong with gloving the Material Glirl.

Fox suggested the following poem. I warn you that it’s his opinion is not mine:

Living la vida loca on the road

“Silvia Plath writes like a dude.” I can’t think of a title that would piss off female poetry judges more than this one. Hate email would’ve filled Unknown’s inbox. None of which he would read because they’d all be too long, arguing every point from every poem that Plath ever wrote, and every essay that was ever written about Plath, and why he was so wrong and misogynistic for saying so. It was a joke, ladies. College is over. Time to marry rich. – So says Fox. p.s. Someone send over another 12-pack. I just got my second wind.

Stay well.

Saturday Funhouse – CF Has Driven Me Mad

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I lost my sanity many years ago. CF ran off with it like a toddler wound up on Red Bull, clutching a stuffed animal. I’ll never see Bobo Bear again.

The heart was enlarged, Doctor

It’s feels uncomfortable knowing that I’ve gone mad. I thought it would feel like the iodine contrast they give me before a CT scan, that warm feeling that rushes through my body and makes me nauseous. But it was more like an earthquake. The ground started shaking and there was nothing I could do but hide under the table.

Here’s how I knew my marbles had rolled down a hill never to be seen again:

I’m not a Doctor, but I play one in my head. When friends and co-workers catch anything respiratory, who evaluates their treatment plan?  The conversation: What did the doctor prescribe? Albuterol?  Good. You may feel jittery. That’s normal. What else? A Z-pack? Take that with food if your stomach gets upset. Buy some probiotics, too. How often are you coughing? Productive? Temperature? Oh, that medical degree on my wall? Yeah, my daughter drew it.

Photo by Alan Light, Creative Commons License

The Man!

Hugh Hefner in the Hospital. When I get assigned a hot nurse, I actually believe I have a shot. That’s despite the fact I never shower in the hospital, my hair looks like there’s mold growing in it, I stink of man musk and I’m married. Not that I’d want to ruin my marriage, but something inside me says, “If I tried hard enough,this room could turn into the grotto at the Playboy Mansion.” Because nothing attracts nurses like hospital-patient repartee, a PICC line in the bicep, and a crushing badger-like smell. Sponge bath, anyone? Anyone?

I would love fur and a little tail

Labrador Syndrome isn’t a medical condition, but it should be. I have the nervous system of a hunting dog. I’m constantly monitoring every little signal in my body. What’s that ache? Did my lung collapse again? Am I having a heart attack? Exacerbation? Stroke? All of them at once? The irony is that I’ll probably miss the signals for one of these when it does happen. Or, one sunny day, they’ll find me on my front lawn on all fours, looking for birds. Bird, bird, where’s the bird, I’ll say, drool dangling from my chin, as the dog catcher puts the loop around my neck.

I can read my own fortune. I can stare at my sputum like I’m reading tea leaves. Thin or thick? Color: Sea Sponge Green or J. Crew Sticky-Forest Yellow? How much? What’s that speck? Blood? Is that McGriddle or sputum? In public, I have a method for running off somewhere so I can stick out my tongue and inspect the specimen, looking cross-eyed and crazy. I wonder how many drivers in front of me have ever wondered, “Why is that guy sticking his tongue out at me? WTF is he looking at? Oh, gross.”

Who has a paper clip and some ear wax?

Open Sesame.  Germs are everywhere, especially on door handles. I reach for the door in places no one else touches. Or, I use my t-shirt covered hand to open the door. But sometimes, someone has designed a door that exceeds my MacGyver-ness. I go back to Labrador mode and wait for someone to open it for me. And wag my tail when they let me in or out.

Animals talk back. I write a blog where I talk to an imaginary fox named Fox. [Message from Fox: Why do I feel like kicking your yellow-Labrador ass right now? Don’t make me show you who’s real. I invented you, Unknown. That’s right. And I can delete you at anytime.] That’s confusing. Perhaps, Fox has a point. Am I the creation, or is he?

Stay mentally well.

Why I love My Wife and Being Married

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[Apologies for last night’s post by Fox. He’s officially banned from posting again. I do not condone running over small animals for food. Let Fox buy the butchered animals at the grocery store like the rest of us.]

I realized that I have not written anything about my wife yet. I haven’t told her about this blog either. Lucy, I have some explaining to do.

Not sure what she was thinking almost 25 years ago when she started dating me. I am a day at the beach, but that day is stormy and cold and the beach is covered in broken sea shells.

Your prize is Unknown

I definitely won the love-lottery jackpot with her. She won the two-dollar scratcher ticket – the one you don’t cash in because it’s only two bucks. The CF stuff she’s had to put up with over the years – yikes. I can say she is 100 times braver and stronger than I.

One night, she stepped on a piece of glass in the garage. Blood was pouring out of her foot, Monty-Python style. She asked if I thought she had to go to the hospital. I couldn’t stop dry heaving looking at it. Yes, you’re going to the E.R., tough gal. Start hopping to the car.

Here are some reasons I love being married to my wife.

Where are my police lights?

I work for the Geek Squad. She has a Master’s degree, but anything electronic that doesn’t work comes to me. “Camera no work. Fix please,” she says like a cave girl who just discovered a broken rock. “What does ‘your computer is infected’ mean?” It’s all very cute, but I want benefits with my job and one of those cool Geek Squad VWs.

Favorite food of Nanos

She brings home the bacon. I hate grocery shopping more than bad respiratory therapists. I don’t like the crowds or germs. I buy stuff I don’t need. And, GPS navigation is needed to find food thanks to the cryptic “hints” over the aisles. I feel like I’m playing Myst II – the clues make no sense. It also reminds me of when I was single and I thought I could meet women there – I’m zero out of 53 on that one. My line, “I’m cookoo for your Coco Puffs” never really worked. Not sure why. I thought it was funny.

How much will it cost?

Confessions of projects gone well. Two years after I finish a home repair, I get some admission that it’s really nice. Two years to get that approval. It must have to make its way through certain DMV departments in her brain before it gets to her lips. “Why do we need a window over the bed?” she asked. Two years later she said: “I love leaving the window open at night and the fresh air.” What? What was that? Did you just admit it was money well spent? Come back here, you. Come back here. Don’t run away.

I love her muffins

The Muffin Inquisition. No, my recent tweets about my wife’s muffins did not contain double entendres. My daughter ate six of them while my wife was out running. Then, when she returned, I was interrogated as to how I could let that happen. My reply: Do I look like the muffin police? Strike one. “Why didn’t you put them away before you ran?” I asked. Strike two. “Will six muffins really hurt her?” Strike three. Mr. Clueless, you’re off to the jewelry store to buy something shiny.

A comedy and language god

George Carlin would be proud. If I do something “uncouth” then I am disgusting and have a bad habit. If she does something we don’t mention it, pretend it didn’t happen, or laugh that our yellow lab did it. When the lab does let one rip, I get blamed. We also use different terms – I fart; she “spoodles.” That sounds cuter, like Spoodles the Toxic Clown popped out and started shooting flowers in the air. Mine require a Hazmat team. Hers smell like Glade lemon-mango-guava morning mist gum drops dipped in lavender. You say tomato, I say rotten tomato.

I better stop digging my future hole at this point. Know that I’m the luckiest man in the world. And those who take a chance on those of us with cystic fibrosis have a strength of character no writer will ever capture with words.

Stay well.

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