Author Archives: unknowncystic

@onlyz’s Fun Friday – Five Fun Pranks To Play at the Hospital

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[Disclaimer: Each of these pranks has the potential to go drastically wrong and harm people, including you. Please remember that this an entertainment site and it is strongly recommended that you do not follow anything that is written or said here.  You may end up in a car trunk with hospital workers debating how they’re going to chop you up. It could happen. Don’t say you weren’t warned when you’re searching around in the dark for crowbar to defend yourself.]

[Disclaimer #2: THIS POST IS VERY ADULT, or childish, and you should skip it if this isn’t your cup of tea. So, perhaps, you may want to return to something not written by an insane person who is tired of quarterly hospital stays.]

Prank You Very Much

Ah, there’s nothing like 30 or more hospital stays to bring out the humor. So, today on @onlyz’s Fun Friday, I celebrate that joy and happiness with five fun pranks to play while enjoying your vacation at the hospital.

This can't be good

  1. What does the color of your sputum say about you? This is an easy one to start your life of hospital pranks. You’ll need an extra sputum jar. Take some food coloring and put a little in your next sputum sample. You’ll have the nurse looking at it like an engagement ring from a rock star as she walks headfirst into the door.
  2. Privacy Please. When you absolutely need to be left alone for that conference call or quiet moment with your spouse, putting a “Do Not Disturb” sign on the door is about as effective as inserting your own PICC line. Here’s a sign that will make anyone check their courage meter before coming in: If the van’s a rocking, don’t come knocking – massage therapy session in progress. For added authenticity and  confusion, print it on paper with the hospital logo.

    Hello? Anyone there?

  3. Big Brother Is Watching. Place a fake security camera in your room (available on eBay). When someone notices, and they will notice, say “yeah, I thought it was strange when they installed it. Who do you think is watching?” Then stand up and pretend to look in it, making crazy faces and acting like a monkey. Finish by mooning the camera. “Let them tape that bitchin’ backside,” you say laughing.
  4. Pump yourself up for the big game. Sometimes its hard to take the sixth blood draw from the guy whose piece of fruit in phlebotomy class couldn’t scream every time he stuck it with a practice draw.  My suggestion: have a football helmet next to your bed and every time someone comes to stick you, put in on, do a motivational pump me up dance and cheer: “I’m ready – BRING IT ON!” For extra effect, spike a football after they’re done.

    Have you been a bad boy in the hospital?

  5. I hearted stewardesses. Nothing says party and drunken flight attendants like empty mini-bar alcohol bottles lying around. You won’t believe the doctor’s face when he sees the bottles, United Airlines flight attendant blazer, lacy undergarments and lipstick marks on your sheets from the previous night’s romp. If the doc puts up a fuss and lectures you, it’s time to pull out the greatest excuse known to us CFers. “Doc, I have cystic fibrosis. What did you expect me to do, say no?” Likely, you’ll get a wink and an approving “don’t let me catch you doing that again” look. Offer to show him the video when he’s cowboy enough watch it.
  6. I.V. Hell. This one is a classic, needs to be done early in your stay, and works best with residents. And you’ll need the help of a nurse. Have the nurse dress your neck like there’s an IV inserted in your jugular vein. When the doctor comes in and says, WTF, keep a straight face and say: “Yeah, I was surprised, too, but they said it was there or [point to your private area]. Not much of a choice now was it, Doc?”

    It's hard to find ruby slippers in an 11

  7. The Wizard of Oz. This trick will require some money and a trip to the costume store, but it’s well worth the investment. Each day you’re in, wear a different Wizard of Oz costume. Think of the fun you’ll have growling at people as the Friendly Lion, and making a hay trail as the Scarecrow. When you’re the Tin Man, here’s your line: “I hope you brought a strong needle today, babe, cause I’m 100 percent pure tin made in OZ.” Always wear the Dorothy costume on the final day, as nothing brings about a psych consult like cross dressing in Oz costumes. Also, don’t forget the stuffed Toto for that added detail.

BTW, @onlyz can’t count. Have a good weekend.


Back on the canvas thanks to my stomach

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I thought I was doing better yesterday until around five. That’s when the low grade fever and bloating that made me look like a pregnant woman hit me hard. I was so close to going to the ER, but I dug deep until the Tylenol kicked in and reduced the fever and pain.

This morning the doctor placed me on a liquid diet, which is a frigging drag. It seems to be helping, however, as I’m not running a fever tonight and feel a little better, though I still look pregnant.

I have a doctor’s appointment in the morning. Can’t wait to see what ails me. Ah, the joys of CF.

One of the parts I enjoy least is trying to work while not feeling well. Working today was a grind. I am no sympathy for healthy people who don’t get their work done. 🙂

That’s it for tonight. All the best to everyone.

Fox Ventures Out for a Day Trip

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Fox is a trickster

Fox jumped out of my computer today and landed on my desk, sending papers and books everywhere. Then he sat and stared at me with his fox eyes, making it hard to concentrate on my work. Finally he spoke and told me he had a gift, but I didn’t see a package.

Everything went black for a second. Then I had a vision:

My tweeps and I were in the middle of the Pacific Ocean on a fast-moving yacht.

Dragging in the water behind the boat was what looked to be a giant green Michelin Man, but it was really cystic fibrosis. Sharks were tearing pieces off its body as it bounced up and down on the water. It was still alive, but clearly suffering, and had seen better days before it had become a toy for the sharks.

@CysticGal walked up to me holding a paint brush. “I’m painting the yacht purple,” she said.

“What happened to pink?” I asked.

“Purple is the new pink, dummy,” she said.

She looked fantastic in a sharp-looking Calvin Klein boating outfit and Jimmy Choo deck shoes. She walked away and splattered purple paint all over the deck. Magically, each splotch transformed into a perfectly shaped flower.

“Hey, Ronnie,” I said as @runsickboyrun and Mandi jogged past me. I did a double-take because Mandi was having a hard time keeping up with Ronnie, who looked supercharged. Their video crew couldn’t keep up and tumbled over the side of boat.

A camera appeared in my face with @onlyz peering over the top. “Cheers, mate. Glad you finally woke up. Thought you was a right bang pludge wonk there.” I had no idea what he said, having left my British English/Real English dictionary at home.

He snapped another three photos, as @CFFatboy, dressed in his tattered college alumni shirt, stuck two fingers behind my bagged head, rabbit style. He had a protein shake in the other hand, but looked like he’d exceeded his weight goal by a few dozen pounds.

“You still need to drink that stuff?” I asked.

“Hard habit to break,” he replied. “Benching a ton these days. Loving that.”

Looked like he weighed a ton judging by his torn clothes, kind of like the Hulk – if the Hulk had a Florida tan and wasn’t green.

I went to the upper deck, passing @rlcarroll working on his iPad, drinking an Old Milwaukee. “You were right, Unknown, this beer is good and my iPad does rock. Who’s Laughing Out Loud now, B-atch,” RL boasted. I thought about kicking the iPad out of his hands into the water, but I saw his sunburn and decided silence is golden.

Tasty goodness in a bottle

A woman with her back to me was loading a large surface-to-air missile launcher. I’d never met her, but I knew who she was.

“Finally, we meet” she said. “You ever going to take that bag off your head?”

“When I can afford plastic surgery,” I replied.

She smiled. I looked at her eyes, happy to finally meet her, and knew today was important to her.  “Will that be enough?”

“Oh, my toy?” she asked, holding up the imposing weapon. “I’m ending this madness now.”

With that she walked down to the back of the boat, passing @seanset, @cfstinabug, @CF_gurl, @Nanosmakemepuke and my other Twitter pals, who were all dressed in formal wear. @CysticGal had changed outfits, too, Vera Wang spring collection, and had some rock star I couldn’t place next to her. She was happy because she set the drink theme as “M,” as she loves alliteration. Everyone drank mohitos, martinis and margaritas.

My newly met friend and her large weapon stood at the back of the boat, CF dragging and bouncing in the water, eyeballing us, fight and anger still in its eyes. But it knew what was about to happen. The hunt was over.

She raised the large MRP weapon of destruction to her shoulder and sighted it squarely at the monster, whispering something to herself, adjusting to the motion of the sea and the monster. Up and down the boat rode the waves until a large crack broke the silence, a trail of flame and smoke followed the shell to its target.

Pieces of CF flew everywhere, landing in the water. @onlyz detached the dangling rope. “Well, that happened,” he said, wiping his wet hands on my bag, making it stick to my head.

We left CF behind, the sharks cleaning up the bloody mess until there was nothing left.

Everyone raised their glasses, toasted, sipped, and was quiet. Warriors lost filled our hearts and minds, as we knew it was time to head to port.

The vision ended there and I was left to wonder when Fox would return and send me back to the yacht. The best was yet to come.

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Kicked to the canvas today

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I’m not sure what hit me today, but I got punched hard.

I was feeling well early in the day. I did 30 minutes of light exercise bike during a conference call. Then, I made and ate my lunch. Then everything came crashing down fast. First, I felt like my eyes and were tearing and burning. It felt like an allergic reaction, but I’d taken my Alavert. Felt a little like I couldn’t breathe and was very sleepy and nauseous. My stomach was bloated, too, and I felt like I had to bring air up. Had some trouble swallowing. Then the anxiety kicked in thinking that my lung may have collapsed again, which I haven’t completely ruled out.

Took some xanax, which helped, but 7 hours later I feel like I’ve just reached my knees at best. Still feel like my stomach isn’t right. I have to admit in these moments I feel like giving up. The only thing I did differently today was take my zithromax at lunch instead of dinner. Maybe I had a reaction to that? Could the light lunch have allowed the zithromax to react differently in my stomach? Hard to say. Will call doctor tomorrow if not better.

Apologies for the post tonight. Better one coming tomorrow, I hope.

Monday Musings – Five Qualities I look for in a Nurse

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I am a big fan of nurses. Without them I might as well jump out of the hospital window. They are the wonderful people who drive my recovery. I cannot imagine a hospital without them, especially the caring majority I’ve met.

Filling up I.V. meds or jars of moonshine?

There are some specific qualities that I look for in a nurse.  Here are the top five. Note: For the purposes of this post, I will refer to nurses as “she.” There are some great males nurse out there, too, though the one I had recently may of been dipping into the red wall bins for a quick joy ride to “used meds” nirvana – would a skull and cross bones on those boxes discourage double dipping? Something tells me “no.”

Here we go:

  1. The nurse is healthier than I am. If she walks in hacking and coughing I want permission to open a trap door in the floor and drop her to the bowels of the hospital. If I hear her lie “it’s just allergies” when she looks white as a ghost, there will be a problem.
  2. She went to nursing college in the States, not Grenada or Tahiti or the Republic of the Internet.  All right, I might flex here and say major countries like England and Germany and Canada.  Let’s make a rule that if flip flops were acceptable footwear at your nursing school, you can’t be my nurse.

  3. Study or party? Photo by melalouise, Creative Commons

    She can insert an I.V. the first time. Have you ever been to the ER?  Nurses there start an I.V. quickly and on the first try. Why do some nurses treat the insertion like they’re buying a house? How many locations can there be to stick me? Look for the bulging veins. Start there. When you’re on your third try don’t tap on my arm to find a vein. That must be an F’ing magic trick only you know how to do because when I tap on my arm all I get are red spots.

  4. She’s not drunk. I may be fascinated by the woman who likes to tie one on to the point of slurring – who do you think appears in those homemade videos on the Internet? But when it comes to taking care of me and making sure you’re hanging the correct meds while I’m dreaming of crushing CF with my steel-toed boots, leave the champagne in your car corked, please. Some doctors might think it’s cute when you’re a little over the edge at the holiday party and may want to marry you one day, but I’m trying to remain alive during my stay.
  5. She’s over 25 and under 70. Do I need to explain this one? I don’t want to be your first patient or your last.

    Do you feel lucky, punk? Do you? Photo by Rivertay Creative Commons License

    This doesn’t apply if you’re super smart and graduated at 19 or if you’re over 70 and can actually pass your driver’s eye test without memorizing the chart. Also, regardless of age, I don’t want you to be super hot. Surprised? I’m cooped up for a week in a walk-in closet. The last thing I need to be thinking about is doing something I’ll need a divorce lawyer for when I get out. Eliminate my temptation and skip the blue eye shadow.

  6. Bonus: She skips rather than walks into my room. I want a happy nurse. I want an entourage of small animals to follow her into my room. Skip on in, Mrs. Happy and gang, nice to see you. One rule: This can only happen after I’m fully awake. If I see a squirrel looking over the edge of the bed at seven in the morning I’m going to cap him with the .357 I keep under my pillow for protection from the crazies roaming the halls at night. You may, however, kiss me goodnight on the forehead each night and skip on out the door, leaving a trail of berries as you go.

Best of health to you and the nurses who take good care of us. They’re the best, except the ones who can’t work the IV machines. They need to be banished.

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CF, Do You Hear Them?

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[This post is best read with heart-pounding rock n roll playing]

Yum, but every day?

Without my wife, I’d be somewhere in downtown L.A. pushing a shopping cart, I.V. pole secured by a couple of old belts, loyal dog at my side. The Wandering Cystic would be my name and I’d be . . . S-O-L. My daughter, hair “unbrushed” for the last year, would eat creamed corn from a rusty can.

Today, I thank my wife for being a great mother, a partner in fighting cystic fibrosis, and the magician who brushes our daughter’s hair. Love, baby, love.

Let’s not overlook the wife – or girlfriend – and the mother and their importance and bravery in the fight against this menacing disease.

We’re talking about strong women who have answered the call with “There is nothing in life you can burden me with that I cannot handle – Nothing.” They are the hero of the movie who, when knocked to the dirt, gets up again, wipes away the blood, and asks, “Is that it? Is that your best punch?” as they crack their necks and go to town on the villain. And,unlike guys, they clean up the mess when they’re done.

They are inspiration; they are strength; they are the baddest cats on the planet and you’d best not mess with them, CF.

When I stand in the Colosseum staring at the hulking form of cystic fibrosis retreating, thinking I scared it away, it will be no surprise that it’s really afraid of my wife, chainsaw in hand, standing next to me. And next to her a mother in Texas, with a wound that won’t heal, waiting to unload a cannon of hurt; and next to them, mothers with CF and mothers with CF children ready to take a shot. The line is long, my friends. The line is really long.

Your day is coming, cystic fibrosis. Your day is coming. Do you hear them, CF? – these strong women.  They are going make sure your beating comes sooner rather than later. And this time there won’t be anything left to clean up.

Happy Mother’s Day.

xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxo

Let’s Have Some Fun Living Friday – The Unknown Comic

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Rights unknown

My friend @onlyz told me today to stop talking about dying because there was living to do. He never pulls punches in his “140 characters or less” tweets. But he is correct – there is living to do.

Tonight, I celebrate life and the inspiration for my blog identity, Mr. Murray Langston, aka, The Unknown Comic, who has delivered loads of laughs and happiness to others. I loved watching him on The Gong Show. And I respect, honor and parody him here on this blog.

Here’s a link to his Wikipedia bio: http://en.wikipedia.org/wiki/The_Unknown_Comic

If you read the bio, you’ll notice the last line: “He is active in charity work, particularly for children’s advocacy causes.” How nice is that. I wonder if one of those charities is cystic fibrosis?

Here are two youtube.com videos of The Unknown Comic:

http://www.youtube.com/watch?v=Xj3Q9l9Ivng

http://www.youtube.com/watch?v=_zrORaRB5S4

Enjoy and have a fantastic weekend. I’ll do my best to live as much as possible. Thanks for the redirection, @onlyz.

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A New Weapon Arrives – fear.less Magazine

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Two subjects I think about a lot are cystic fibrosis and fear.

You had me at fear.less

I know the exact point CF became a disease of fear for me. That story is sitting in my blog’s “drafts” folder. I haven’t been able to finish it.

Before that tipping point in my life, I faced down this disease with the bold confidence of youth. After that moment was a life fearing what I had to lose.

So, it was with jaw hanging open that I started reading a new online magazine called fear.less. To quote Rene Zellweger in Jerry Maguire, “you had me at ‘Hello,”” which for me was the title.

A magazine about facing fear head on? How many CF warriors and warrior parents can you see in their upcoming pages? I plan on emailing fear.less with a few suggestions.

Here’s the link,  http://fearlessstories.com/.  Tonight, I applaud the fear.less creators for telling the stories of people who have “miles to go before they sleep.” I can’t wait to add their stories to the CF stories I read every day.

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Renaming My CF Drugs

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It started with a puppy

Hello, Cystic Gal

When our then five-year-old daughter wanted to name our new lab puppy, we created a naming rule to weed out the names we couldn’t live with or inflict on the pup.

The naming rule: If we couldn’t stand at our front door and scream the name into the neighborhood without feeling embarrassed, the name was scratched.

Examples of names that didn’t make the cut: Cupcake! Creamsickle! Vanilla Latte! Banana Cream Pie! We laughed hard testing them, confirming to neighbors that we’re nutty, or least that I am.

Which brings me to CF drugs. Who names this stuff? Someone in Marketing obviously doesn’t understand what it’s like to take a medicine every day or every other month of your life. Or, at the very least, they don’t understand the psychology of the disease.

So, I’ve decided that a little renaming is in order.  Here we go.

Giving CF drug names some teeth
My wife once asked what drug I was doing and I answered, “I’m doing TOBI.” A small body shiver hit me as I realized how that might sound to the untrained ear. Not something I would want to yell from my front door.  Not to mention that our friend’s yellow lab was named Toby, and he couldn’t do much harm to bacteria.

We need drug names that sound tough. When I inhale or swallow a medicine, I expect it to go into my body and crush the last breath out of the bacteria. No more taking drugs with names created by nuns moonlighting as scientists. How about some muscle and weaponry?

Let the hellfire rain down on the cockroach Pa

Old name: TOBI. A name for a yellow lab.

New name: Armageddon Hellfire Mist. This drug name should be the equivalent of spraying RAID on a cockroach, then backing your monster truck over its carcass four or five times. If I’m going to invest 20 minutes twice a day breathing this stuff, I want it to be the end of existence for the cockroach known as Pseudomonas. I want this bacteria to face its worst nightmare – Armageddon – because this is a battle of good vs evil.

Old name: Colistin. A name a celebrity would give their kid.

New name: Lung-Jax. There’s no substitute for the scrubbing power of Ajax. I want my lungs shining like my sink and toilet do when my maid hasn’t been on a three-day bender of Mojitos and Manhattans. So shiny and new, the bacteria can see their reflection as they melt like the wicked witch in the Wizard of Oz.

Old name: Hypertonic Saline. This isn’t the worst name I’ve heard. I like the “hypertonic” part. Saline, not as much.

Love this stuff! Blast the mucus away

And Hyper-Sal? “I’m doing Hyper-Sal,” sounds like something a mafia wife might tell her friend over lunch.

New name: Hypertonic Jet Wash. Mythbusters placed an old school bus behind a 747 with its jet engines blasting. The “wash” from the engines blew the bus away like it was made of paper. That is what HJW does. Load up that old bus with bacteria and give them a ride they’ll never forget – right into a trash can on the wing of a paper towel.

Old name: Cayston. I want to tread lightly here because when I tested this drug I thought the nurse told me its name had a special meaning. Still, the name is a little too “prep school” for my taste. Let’s give Cayston a pet.

New name: CRR (Cayston’s Rabid Rottweiler) Unleash the attack dog with this drug. It chases down Pseudomonas aeruginosa and bites it in the ass.  “Oh, it’s just a doggy bite,” the bacterium says in its fake British accent, until the rabies start kicking in. No laughing then. And, no shot clinics in the lungs, either. Whose mouth is foaming now, bacteria scum.

Old name: Pulmozyme. I get it. The drug thins and loosens the mucus. Nice. I can work with that.

Clean-up hitter.

New name: Lobe Lube. This is like taking your 67 Mustang into Jiffy Lube for an oil change. Out with the crud, in with the new slippery oil.  Man, this baby purrs now. Not sure I’d take my new car here, but my beater, yes.

Old name: Xopenex: This sounds like something my crazy aunt calls her ex-husband when she’s pissed and lubed, which is most of the time.

Wedge those lungs open

New name: Crowbar. This has a double meaning. First, I want this drug to go in and wedge open my lungs, making way for the other drugs that follow.  Second, a crowbar is what my aunt used on her ex-husband to open his skull to the tune of 40 stitches when she caught him with Hyper-Sal’s wife. Good enough for her, good enough for me.

I’m feeling better already. Think of the marketing potential and packaging possibilities. Nice, huh?

Well, it’s time for me to go Crowbar my lungs open, flush them with a some Hypertonic Jet Wash, coat them with Lung Lube, then inhale a little Armageddon Hellfire Mist to kill the cockroaches that have been living large in my lungs.

I’ll get to the pills another day. I’m thinking Al Pacino in Scarface – Say “Hello” to my little friends, Cipro and Z-Pack.

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Monday Musings: The Right Stuff?

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[Note: This blog contains the rantings of a madman. Following any actions in this post or others will definitely damage your health, if not kill you. In other words, do not attempt anything discussed here, please. All medical decisions are best made with medical professionals who haven’t lost there minds after years of battling CF.]

Pilots, Astronauts, and Pushing the Envelope

I love the movie The Right Stuff. What’s not to love about the coolest guys ever flying jets beyond the speed of sound and riding rockets into space. Heroes, all of them.

What kind of courage would it take to do something like that? To risk everything – your life and any love and happiness you might have known – to fulfill a dream unlike any other. And then to repeat it in test flight after test flight with the odds increasingly against you?

Who would you have to be to do that? Man or woman? It doesn’t matter. Who?

Now, a hypothetical question. Let’s say you have cystic fibrosis in the moderate stage, four hospitalizations a year, hemoptysis, and you’re trying to hold on to what you have. But you know your luck can’t last forever. You experience a slight downturn in your PFTs and wonder if you have any tricks left.

Photo: jurvetson creativecommons.org/licenses

And you understand you’re potentially one day away from an infection that might put you down hard or move you to the severe stage – getting CF’s painful backhand across the face, your head turning in slow motion, teeth and blood flying as you drop to your knees – not enough to kill you, just make you suffer more than you’ve ever suffered before.

New medications are years, a half dozen trial stages, and a mile of red tape away. But there is something else, a rocketship parked in the desert with your name on it. A way to bypass the delays. Do you get in and risk it?

Again, hypothtically, what if a chemical existed that might provide breakthrough results right now?

But there’s a catch – there is always a catch.

  • The chemical is hard to get. You can’t drive to your local vitamin store, buy a bottle and start ingesting it like a pill-popping madman. No, there are hoops you have to jump through and white lies to tell before you get it.
  • You have to apply it to your skin and there is no set of instructions how to do this or what mixing agent works best. Take your pick.
  • There are no dosing instructions. There is advice from some braver test pilots, but that’s it – no Tylenol box with the maximum dosage for a 12 or 24-hour period. You can go crazy and bathe in it if you like. No rules here. You control the throttle.
  • Unlike experimental trials or any trial, this is mostly hypothesis with a few test flights.  No real laboratory results or longterm safety testing. It’s you, the test plane, and miles and miles of blue sky. Will you be able to reach the eject handle while cartwheeling out of control?

With these obstacles in mind, what would you do? Would you place the compound on your skin like a nicotine patch? No idea how your inner chemistry will react?  Would you risk everything?

Do you have the right stuff? Is it the right stuff?

I look up at the stars as I would any other night. But this time I hear a noise in the distance echoing off the canyon walls and desert floor, breaking the silence . . . 10 . . . 9 . . . 8 . . . 7 . . . 6 . . .

Helmet tucked against my body, I walk toward it one step at a time.

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