Author Archives: unknowncystic

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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Not So Deep Thought of the Day – Who Burned the Chicken?

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I mentioned in a recent post that I love the concept of fear.less Magazine.

Scary

I started laughing today because it hit me that I will never make the electronic pages of fear.less. Never because I fear everything. Everything infinity. I win.

In fact, I started making a list of my fears for this post and had to stop because I started getting scared. I reached for my little fear-killer, Xanax, to calm my frayed nerves. Then @cysticgal tweeted me to let me know that I’d once again managed to included women and alcohol in a post. I felt better and strangely proud because, yes, I can write about subjects I know nothing about.

So, today I decided to start my own anti-fear.less magazine called fear.ful Magazine.

For about five minutes I thought it was a good idea. I even started drafting ideas for it, a table of contents and the cover art.

Here’s my idea for the fear.ful cover:

I’m standing on the roof of a two-story hospital, which is scarier than a 10 or 15-story hospital because I might survive the fall. I’m dressed in a burning chicken suit surrounded by door handles, chest tubes, split infinitives and respiratory therapists – a scary face is painted on the paper bag over my chicken head. An angry doctor is ready to push me off the edge. No need to cast an actor for that role, as I can pull a few from my past to give me a bump. A dozen Cirque du Soleil clowns wait below to catch me with a large paper net doused in gasoline.

All of that sounded great until I became afraid fear.ful would be a huge fail.ure. I’d lose my money, get sued by lawyers and end up in an alley nebulizing rat.

So, I popped another fear killer, kicked back and read some Charles Bukowski, avoiding sleep, fearful of the nightmares that would come from writing this post.

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Why I Love Visiting the Emergency Room

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[Disclaimer: Adult content. Do not attempt anything mentioned here. You’ll only get arrested,]

Do you have a reservation, sir?

I almost had to visit the ER visit last week due to stomach problems. I hate going to the ER so much, I gutted it out, pun intended.

Here are my favorite things about the ER:

I’m really here to rob you. I must be the only one who enters with a mask on. That’s the look I get from admissions, to the nurse who takes my vitals, to the first doctor I see two hours later. And to tell you the truth, I’ve never see anyone else show up with a mask on. No wonder they’re afraid of me. “Everyone raise your hands. This is a robbery. Toss your pulseox, heart monitor, and X-ray machine on this dolly. I can do all of this at home, people.”

Not like it was years ago, honey.

For VIP service. Look, let’s face it, the ER isn’t the Brown Derby. There’s no tipping the nurses to get served faster. But there are a couple of methods to reduce your exile in waiting room hell. First, always mention your chest and heart. I don’t care if you only broke your toe, say: “I’m having chest pains and can’t breathe. Oh, and by the way, could you X-ray this swollen toe while I’m here?” Second, if you’re coughing up blood, don’t be shy about it. Either bring a white towel with CSI blood evidence all over it or let a good cough splatter hit your shirt like you’re a drunk. They’ll take you right to your table. Don’t forget to tip.

CF is slang for Genetic Lotto Winner. Oh, how I love to hear, “you’re really lucky” referring to how long I’ve lived with CF. Yeah, I’d agree with you most days, but I’m not feeling so lucky right now with this collapsed lung and upcoming week “tubed” to a plastic suction box. Or, I’m not really connecting coughing up blood and luck, doc? Does the first person tonight with hemoptysis win a chicken dinner or something?” Then I’d feel lucky. Winner, winner, chicken dinner.

Appearing at Midnight, the Unknown Cystic

There’s a reason they put walls around toilets. Lying on a gurney for four hours in the hallway with staff members discussing my medical history is the equivalent of sitting on a toilet taking a dump in the middle of a mall – the same number of people walk by staring at you. That’s how much I hate the lack of privacy. “Where’s the damn toilet paper? Hey, you, buddy, standing by Victoria’s Secret. Toss me that catalog.” Welcome to my nightmare.

Shake this. I’m wearing a mask. I have cystic fibrosis. And you want to shake my hand, doctor? Please, why don’t you just let me lick your palm like your black lab does after you’ve eaten a slab of BBQ ribs. Better yet, after you’ve wiped it on every other patient and the floor. Just for kicks, how about giving me something I didn’t come in for – like the “hoof and ass” rash the guy in stall four has. In a fake British accent, Thank you, sir, may I have another, please.

What happens in the ER . . .

We’re on Las Vegas time. Just like Vegas casinos, time doesn’t exist in an ER. Gamble as long you like. In fact, ERs could learn something from Vegas. First, cocktail waitresses with real cocktails would be great. And blackjack tables would be a nice time-killer. For once I wouldn’t mind the two-hour minimum to see a doctor. I’d say, “not right now, doc, I’m down five hundred and Dealer Mikey here just gave me a colonoscopy when he drew a blackjack to my 20. On your way out, doc, let Nurse Ratched know I need another Martini. Shaken, not stirred. Thanks, doc.”

Be well.

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Monday Musings – School, Dreams and a New CF Narrative

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I applaud@cffatboy’s recent college graduation. Three cheers for his hard work and dedication. No one will ever steal that accomplishment from him, except old age when he’s 101.

I watched many movies here

His journey reminded me of when I graduated college at age 32.

I had experienced a difficult time in high school because I lacked guidance, was foolish, and CF had taken its toll on me mentally. I didn’t think I’d need a degree.

Why put the effort forth when you are going to die? CF told me.

Partying and having fun sounded better, though I did those poorly, too.

One day, walking to a movie in Westwood Village – I spent my time in movies escaping – a story on the cover of USA Today jolted me hard. It stated that the CF gene had been discovered and a cure was possible.

Now had this been a movie, zoom to a close-up of my stunned face, sound effects like car brakes screeching and the camera panning around me quickly, 360-degree style, as my world spun out of control.

That simple newspaper story redirected the missile that was my life.

Can't thank USA Today enough

For the first time, I believed there was hope and that my thesis about CF killing me might be flawed. It was a revelation in an “oops, what have I been doing with my life” kind of way. I earned my college degree because of that life-changing moment and started believing in the future.

The role school plays in my narrative and the narrative of having cystic fibrosis is interesting to think about. My mother decided she would help me live to graduate high school. I became determined to graduate college. And my current goal is to live to see my daughter graduate high school.

Great work CFF!

I’m not foolish enough today to think my story is unique. How many of us now living with CF learned at a young age from a doctor that we wouldn’t be here today. That is the old narrative of cystic fibrosis for many now. Thousands of volunteers, parents, CFers, the CF Foundation, and the Internet came together to defy and change it, to elevate the average life span to 37 years.

So, my friends, my question today is: If a new CF narrative exists, what is it? And, drum roll, will it be as wrong as the one the doctors told years ago?

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