Monthly Archives: May 2010

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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A Message from Vulpes vulpes

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Dear Friends,

That's Mr. Vulpes vulpes to you, pal

Unknown is taking the night off to recover from Lost and 24 being cancelled. He’s curled up in a ball sucking his thumb, watching Glee. So, he asked me to write tonight’s post. Not exactly the brightest chromosome in the cell, is he? Letting moi, a Mohito-drinking fox, write anything. However, I choose to behave for once.

Let me thank each of you for reading this blog. I know it means a lot to Unknown. And, if he were here, he’d get all teary-eyed and probably write a poem about how much it means to him, you visiting and commenting and all that.

You can thank me now for saving you from that sappy piece of shit – I mean, poetry. Did I just say “shit?” Unknown will blow a gasket. He’d write it sh** with those cute little asterisks. Not tonight, baby. Adios to half of the readers. LOL to that, Unknown.

Seriously, Unknown feels very fortunate that you choose to visit this blog. And I know he wishes you the best life has to offer and good health. Me, Foxy, I wish you’d hit a fat squirrel on the way home from the office each night. Roadkill saves me having to work so hard to feed my family. Do your part next time you see that critter crossing the road, speed up and stay off the brakes.

Second thoughts about doing that? Ask yourself, “What would Darwin do?”

Fox out.

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A Poem for Cystic Gal

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My blogging pal, the charming and talented Cystic Gal, is back in jail. Argh, *&%&**. So, I decided to deliver some cheer, arguably, by writing this poem for her. Poetry is one of her great loves in life, along with small, cute animals, buff rock stars and a special two-word saying. Here’s a poetry example she can use with her future students to show what not to do in verse. BTW, everyone can start making fun of me now.

Feel better, CG. Feel better.

Two Words Only She Can Say

When you’re feeling light blue,
fat needles jabbing, stinging you,
fuzzy baby animals failing
to drive away the hail
of cutting cold infuses,
painful, not so lovely news.
Resort to these two words
to lighten dark days,
slice the thick green haze,
and give CF two pink-polished birds.

Pitch it all away
with, “how do you say?”
two words for models
who think thin is so May
and dine on tic tacs and hay
these babes that lack back-
bone, your style and brains
or boyfriend Bret in the sack.

Pink flowers again will rain,
your mood lifted, brighter
your gentle tongue lighter
when you share a catch phrase,
plucked brows quick to raise,
from the two words you love
that fit thee like a glove.

Two words that kick and blast
relationships not meant to last.
Two words with slapping power
barbed like a leather flower.
Your two words to fend off
the nasty therapist’s cough.

Let them rip
from your lips –
two words

Suck it.

Suck it.

You’ll feel happier,
smiley, with a wit snappier,
a funny story to tell
about the nasty red face
hit by the shotgun shell
disguised as your verbal mace

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Monday Musings – Lawyers, CF Doctors and the Truth

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[This is an entertainment site. No medical advice is given. All readers are responsible for their own actions. All medical decisions are best made with a doctor’s advice.]

I read an article recently about a murder trial in New York. The author described the evidence in the trial as something each side, prosecution and defense, turns into a narrative they tell to the jury. The jury believes the side that tells the most compelling story with the evidence they have. I’m not doing justice to the eloquent way she described it, but that’s it in a nutshell.

Today I ask the following question: In creating a narrative from evidence, is what lawyers do that different from what CF doctors do?

Read the forums on cysticfibrosis.com. Different treatment methods fill the virtual pages, causing confusion and discussion. Some doctors prescribe steroids; some don’t. Some prescribe Pulmozyme before HTS; some don’t. Some prescribe Cipro three times a day; some don’t. You get the idea.

The Truth?

Remember Jack Nicholson in A Few Good Men – “You can’t handle the truth.” You’re right, Jack, I can’t. That’s because, as I’ve written before, the truth does not equal fact. Truth is a myth, often overrated and sometimes a lie. To tell you the truth, it is one’s interpretation of the evidence. When a witness offers to tell the truth and nothing but the truth, they do, but it doesn’t mean they were accurate. Witness accounts are often proven incorrect.

@CFFatboy wrote an excellent post last week describing how his doctor was going to put him on Cayston every day with no off-months and with alternating months of colistin. Cayston everyday? Not one month on, one month off? My doctor coughed up a hairball with I suggested two inhaled meds at once, even though my logic was that we do it with IV meds, why not inhaled? I’m not saying one method is right or wrong. It just shows the challenge of deciphering competing CF narratives.

If I had a dozen CF doctors taking care of me, I could cherry pick from their treatment plans and create one of my own.

Treatments for this disease vary to the same degree our genetic defects do. Each doctor works from their evidence: the medical papers, case studies and patient files.  From that, he or she creates a treatment plan. And, many times they come up with something based on . . . well, who knows sometimes.

Many years ago, I told my doctor that I felt really good taking Ibuprofen. He said he didn’t think it would make any difference but if I liked it “what could it hurt?” which is “doctor talk” for “you have CF so WTF – live it up.”  Now there is a page on the CF Foundation web site about Ibuprofen as a possible treatment for CF. I asked him about low testosterone. He said mine was probably fine and no supplementation was needed. Look what we know about cystic fibrosis and testosterone levels now. Treatment may be required.

As patients, we may be ahead of a trend because we have Internet access to the evidence, too. With it, we can create our own narrative or truth. And many times we discover it sooner than our doctor who hasn’t read what we’ve read or lived what we have lived.

And though I don’t recommend any therapies here, I see that situation developing now with BITC. Once again a potential treatment may be ahead of the curve. What is the truth about this chemical and its potential as a CF treatment? I don’t know. Once I figure out how to get some, I’ll discover what my truth is, so help me God.

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60-Second Sunday Rant

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We need more people who are mad as hell

I’m looking at the front page of the L.A. Times right now. There’s an article about an automotive company that’s been in the news recently for problems with its vehicles. This article states that the company “sought to cut costs by limiting the scope of repairs.”

I’m not going to debate whether they did this or not. I’m upset because in five years this company will still be around and still prospering. I’m happy for all of the people who work there, but at what point are we as consumers going to say enough is enough? Do the right f’ing thing, companies. Don’t let us read about you in the L.A. Times again.

And the next time somebody says to me that we don’t need government regulation of companies – that companies will do the right thing on their own – I’m going to take a baseball bat to that person. Companies continually prove that they won’t do the right thing on their own, that they will always put profit ahead of customers’ best interests.

What’s sad about these poor decisions is that they are made by people working at these companies. And I wonder what these people would think if they were on the other side of one of these decisions? If their house was being repossessed because the person at the bank lied to them about the loan agreement? Or the product caused them to get cancer? Or if a known vehicle defect wasn’t disclosed to them before they loaded their entire family into the vehicle for a Sunday drive to the mountains?

At what point are we as consumers going to draw a line in the sand with the people who run these companies and take our business elsewhere? I guess at the point when we don’t let our desire for their product overrule our memory of their actions. Wishful thinking?

Saturday Funhouse: Rejected CF Therapy Ideas

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I Stumbled Upon a confidential CF Foundation file today. It contains ideas for potential cystic fibrosis therapies that were rejected or failed in testing. Here are a few from the dozens listed. [Warning: Adult Content, perhaps.]

Good in chocolate, too.

Tabasco Flavored Albuterol. According to the document, the heat of red peppers causes coughing, making secretions fly out. This product only reached Phase 1 testing, which lasted about 30 seconds when “volunteers started collapsing from the pain of the Tabasco” in their lungs. “Sounded great on paper,” one researcher wrote. Though the medicine was cancelled, researchers discovered it still worked great on scrambled eggs and burgers.

Cat, cat, cat, cat, cat

Jogger’s Portable Compressor. This product made it to phase-two testing. The concept was simple and designed for CFers who like to jog. A battery operated compressor in a backpack was strapped to a dog, allowing the jogger to do treatments while running. It worked out just fine in early testing until Rocket, a two-year old black lab, spotted a cat. Unfortunately, the jogger lost eight front teeth, quite painfully, the report adds, “when the nebulizer followed the dog across the lawn.” Product cancelled; dentist visited.

Add one LC Plus and you're good to go

Beer helmet and nebulizer holder. It gets tiring holding a nebulizer in your hand or teeth for hours each day. Plus it’s not easy to drink your favorite beer and type inane posts all at the same time. The answer: combine the tasks. Adding a nebulizer holder to a beer helmet allows users to inhale one drug, then take a swig of their favorite beverage – all hands free. The product was cancelled when drunk subjects nebulized beer and drank TOBI.

Don't miss

Spit the bullseye. This game-like therapy was designed to give patients incentive to cough up their secretions and spit them at a target five feet away. Points were awarded based on the accuracy of the shot. Several problems occurred during testing. First, not everyone is good at spitting. Second, it was a really unpleasant clean up job getting the junk off the wall, not to mention the carpet, furniture and curious pets. And Home Depot doesn’t make paints designed for CF. This failure killed plans for the spinning target in development.

How do I disinfect this?

Bong-shaped Nebulizers. Here’s the failed advertising copy: It’s hard to look cool when your friends come over and you have inhaled meds to do. Introducing the nebulizer that looks like a bong. Now instead of feeling uncomfortable with a PARI LC Plus hanging from your mouth, your friends will marvel at your amazing ability to smoke weed continuously for an hour or more at a time. Who’s the Ganja King or Queen now, pal? Share a hit with them. Then wait until they get that albuterol buzz going, complaining that they feel wound up not down. “Who sold you this crap,” they’ll ask. Smile and say, “this is pharmacy grade stuff, man. Pass the chips, I’m starving.”

Stay well.

Letter to my daughter – 5/21/10

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My dad wears a bag over his head. What does your dad do?

I’m frustrated with this blog today.  Perhaps, I should say lately. And, I’m not sure why. It’s just bothering me. If it were a piece of paper, I’d burn it.

CF may be talking this week. I don’t feel so hot. As my mood goes, so goes my blogging. But I think it’s more than that.

I guess when you try anything new, it will always take an unpredictable path. I’m not sure what I expected other than a place to leave a record for you when you’re older. You’ll be able to say to your friends, “see, this is why I’m so screwed up. Look at the nut job I had for a dad. I’m swimming against the genetic tide here, people.”

I agree with that. I’m not sure how many other dads are sitting around sucking a nebulizer bong everyday. I guess one could look at it that way. Though I read a lot of stories about special people coming from challenging situations. And I wonder how having a dad who spends a lot of time in the hospital will shape you. I’m not sure it’s a bad thing, though you may disagree. It may be a character builder. Or not. You could just spend your life whining like I did.

But something tells me that you’ll avoid that path. That’s my gut. You’re smarter. You’re stronger. Though, I do feel sorry for your future mate, as clearly you’ll be the boss and get your way. Good for you.

Back to the blog. I think the stat meter is bothering me. When I first started the blog, no one read what I wrote. It was nice. I could write anything. It didn’t matter. Now I have a few good people I care about tuning in. When I sit down to write, I’m thinking more about what others may want to read. I feel like I have to keep that stat meter high. I can see what posts are popular; I like the comments. I feel like I’m editing a lot of posts that I’d normally publish but censor now because I’m not sure the blog audience would like them. Or, in most cases, they’d be horrified.

What to do?  That is the question I am asking tonight. I can’t answer it yet. I do think I need to make sure my goals are clear as to why I’m doing this. That will help. I can say that this blog is not really for you as much as I thought. It’s for me, too. Now I just need to decide what I want. I feel a shift coming on. It will be interesting to see what that is.

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The Language of CF – Battle Stations

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I read a fantastic blog essay by Tiffany Christensen, aka Sick Girl Speaks. She discusses the use of the “battle metaphor” with cystic fibrosis and whether it’s time to drop it. I recommend reading her point of view. You can find it by Googling “Sick Girl Speaks blog.”

I hesitate to place the link here because I use the language of battling and fighting all the time. I’ve even personified CF into a hulking form that I drag behind a yacht, or chop into pieces or simply beat up. So, with respect to the author possibly not wanting a link on my site, I give you the information you need to find her excellent post.

I do, however, want to discuss my viewpoint on the language of war and battle with CF. Not to debate Ms. Christensen, as there is no right or wrong here. For me, it’s a “Whatever gets you through the night” situation. “War” and “battle” against my enemy, CF, get me through the night and day better than any other weapon I have.

Over the course of my life, I have compared fighting CF to that of fighting a great war. It has served me quite well and I can say that without it, I would probably not be here now. I would not have had the strength to make it through some close calls or, more importantly, the day-to-day routine of treatments, especially that f’ing flutter, which is a daily battle of its own, my face red, curse words attacking and insulting CF and telling it to leave my lungs.

The battle analogy, or metaphor, depending on your definition, allows me to generate a higher level of anger that manifests itself in added power to blow into that flutter for 30 minutes, or cough harder to get the junk out three times a day, every day. Anger is an important element of battle, too. And, there is science to support it. Weight lifters and some athletes use anger for added strength when lifting; and testing shows anger does generate additional power. Many sports teams, especially football, use the language of war for motivation to win the championship.

Anger and battle go hand in hand for me and if I can direct these at CF and the bacteria in my lungs, all the better. I believe it has made a difference in my ability to fend off this disease. I believe a positive attitude helps, too. And yet, I don’t mind anyone who doesn’t believe this, as it’s all about personal choices. I’m not the guy who is going to beg the jumper to back away from the ledge. That’s their decision to jump, not mine.

Yes, war implies one side loses, but it is CF that is losing right now in my world, not me. I am winning. I am maintaining lung function. But I am lucky, too. My defective genes gave me an advantage many others with this disease have not had. And, many may have “lost their battle to CF,” but I don’t look at them as having lost anything. I look at them as great fighters and heroes who fought an impossible war, but battled anyway. And yes, despite having a positive attitude and fighting, sometimes there is nothing one can do to prevent the inevitable with CF. The question is whether not having a positive attitude and a fighting spirit shortens a lifespan. I can tell you that it would have in my case.

When you’re in a war or battle, you are alert. There is danger. And if you let your guard down, bad things happen. It’s the same with CF. What would happen if I skipped a treatment or two? In this blog, I’ve transferred my anger to the page and felt a renewed energy to fight CF – a renewed confidence that there is hope that this fight will end one day in the death of CF. Some days, it just helps to lob “prose grenades,” whether humorous or sarcastic, at a clearly defined enemy that is causing me so much trouble.

I truly thank Ms. Christensen for her thought-provoking post. She has elevated the level of discourse about this disease. Truly, I believe she is stronger than I, knowing that I probably could not withstand two lung transplants as she has. That is mental and physical toughness of a higher level. I need the talk of the battle to get me through the night. Obviously, she has something else that drives her. And I applaud her for sharing that with us.

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