Category Archives: CF Guy Stuff

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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@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.


Ex-Celebrities, Anger, Perfect Genes, and Feeling Neutered by CF

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Photo courtesy of NASA

I was at my nephew’s little league game yesterday. Perfect day. But I was feeling a little off.

An ex-celebrity coached the opposing team. He was being a d**k and overly competitive and it bothered me.

I don’t think of myself as an angry person, but down deep there’s a ball of rage that bubbles to the surface for special occasions. And it’s not easy to control.

Here was this ex-celeb, the picture of perfect genes, tall, model good looks, who once kissed some of the top leading ladies in Hollywood, with his ex-celebrity wife, herself of perfect genes, making a fool of himself. Perhaps, it was jealously pure and simple that threatened to unleash my little sun of rage.

I wanted to confront this guy and get in a fight, or at least join the fray.

I wanted some magic CF power, almost Vulcan-like, to grab both sides of his face, hard, and show him how lucky he was to be who he is and have what he has. And to show him how infinitesimal in the scope of life a missed little league call is. A punch to the face would have felt good, too, followed by one to his stomach.

Had that happened, hemoptysis would have been everywhere, scaring the children and their parents. Imagine the mass chaos on the field with parents pouring from the stands to get their children out of harm’s way – the crazy celeb-hater spewing blood on the manicured sand and grass.

Cut to the last image of me on my knees on the pitcher’s mound alone with the invisible disease exposed and a Rorschach of blood in front of me.

Perhaps that is why I hate CF so much – the feeling of being a neutered male, different from the rest of the herd, a mutant. Or that CF has kept me from reaching my full potential as a man. Yes, I feel lucky to be here, to have lived this long. But some days it’s just not enough. I want to be normal, to stare at the face of another man, nose to nose, and have the other guy back down.

I want to be the one with perfectly formed bones, square jaw and cool hair.

Without the CF, would my anger still be there? Or, is CF the only thing that has kept me out of prison all of these years? I’m not sure. But I’d like to find out.

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Post Battle Blues – Please add to the list

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Post not sponsored by Old Milwaukee (though it should be based on my consumption of their product the last three days)

[CF Fatboy’s guest post is in the comment section. Watch out, it burns.]

Feeling tired today from the battle with @cysticgal. It could just be the cipro, day 7, or the Old Milwaukee, bottle 7.

I wish we had added number 11 to the blog throwdown:

11) Describe the perfect hospital stay.

My first answer would be: Not going at all. But considering I’ve been going every four months, here’s my answer for today.

I want everyone to line up in the hallway when I arrive, Nurses, Doctors, techs, RTs. Stand in the hall and greet His Highness, please.

My antibiotics need to be ready to go the minute I arrive, no waiting four hours for the first dose.

The PICC line nurse needs to be waiting in my room and gowned up. No more temporary peripheral IV sites. I’m tired of the 24-hour IV site in the fatty part of my forearm that takes every o.z. of my inner reserve not to cry out like Mel Gibson at the end of Braveheart: FREEDOM . . . . . S**T, THAT HURTS.

I want a workstation. No more putting the laptop on the bed and pulling the chair up to it. Think Marriott.

I want a massage every day. You truly want me to feel better? Massage is the Disney Fastpass to good health and Heaven, my friend. Heaven. I’ll cough up mucus from 1969 if you do this for me.

No RTs. That’s right. Unless I can’t move my arms, give me all of the meds I need and come back in 14 days. I can do it myself, LIKE I DO EVERYDAY OF MY LIFE. Most of the RTs I know should be wearing brown UPS outfits because their only job is to deliver stuff.

So, what do you think?  What did I miss? Feel free to add some of your own in the comments section. It’s interactive today cause I’m feeling lazy and I have have to go wash the Bird (that’s guy code for Tran-Am).  🙂


CF BLOG THROWDOWN: Dude Versus the Lady

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Are you ready for the CF Rumble in the Jungle?

In the pink corner, we have CysticGal, sensitive and kind, who adores pictures of bunnies and anything  pink.  She is loving, caring and the perfect model of CF womanhood – A poet of the highest order. And, fan of fuzzy animals and all things “chic.”

In the blue corner: me. I don’t take showers in the hospital; I smell of man musk most days. Raw, nasty and gross and 110 percent CF man. Defective chromosome and mucus-filled lungs ready to roll in my “Smokey and the Bandit” black Trans-Am.

Bring it on, CysticGal. Respect for showing up.

1. What is your favorite thing to spit your sputum in?

CysticGal: I’d prefer you call it “yucky.” I spit the yucky in a pretty blue cup.

UnknownCystic: An Old Milwaukee beer can so I can shoot it off a fence post later.

2. Things you’d like to say to your Nimrod RT:

UnknownCystic: Is that my inert pulmozyme in your body-temperature-heated pants pocket? Or, are you just happy to see me?

CysticGal: If you hit my boob again, we’re done.

3. What do you think about when you’re at the gym:

CysticGal: That’s right, I’m naturally thin and walk this slow on the treadmill. Suck it. And stop staring at me.

UnknownCystic: I don’t like cardio or being a thin guy. No matter how many weights I lift, I won’t look muscular. Where’s the radioactive spider that turns me into Spiderman?

4.What excuse do you give to avoid taking the stairs?

UnknownCystic: Sorry, my knee is acting up again. Old bear-hunting injury. But we ate like kings that night. We ate like kings!

CysticGal: These heels are killing me! I’ll meet you up there. (Said while wandering off toward the elevator.)

5. What is your biggest worry about your body?

CysticGal: That others will be jealous of my supermodel thin bod. Poor ladies!

UnknownCystic: I worry about the inside of my body. Don’t want to be coughing up blood when I’m hanging with supermodels, do I? BTW, the bag over my head helps in those situations.

6.  What is your most attractive CF-related quality?

CysticGal: My raspy voice gives me that Demi-Moore-esque quality… or is it that I’m sleeping with Ashton Kusher?

UnknownCystic: I have no attractive qualities, hence the bag over my head. CysticGal, digging your choice of Demi. I’ll call you late one night for a . . . talk. You can call me . . . Ash, baby, Ash.

7. What would you change about your CF Clinic?

CysticGal: I’m not saying that it’s okay to use prescription drugs for the wrong reasons, but I am saying I’d like to be high the whole time. I think its best for all involved.

UnknownCystic: My clinic experience will be similar to eating at Hooters. I want hot wings and ESPN in every exam room. The nurses, well, you get the idea. And can you tell the “high” woman in room 7 to pipe down, please.

8. What line of poetry best describes living with CF?

CysticGal: “A good day ain’t got no rain, and a bad day is when I lie in the bed and I think of the things I might have been.” I don’t expect UC below to understand that. So I’ll offer him this: “Genetics: It’ll screw you every time.” That is not poetry but just a phrase I like to incorporate into all of my explanations of CF.

UnknownCystic: I don’t understand either one. Hey, this is a chick question. I read “Hunting Dog Monthly.” But here’s one from my hardhat to impress. And it’s from a woman, Sylvia Plath. “Her blacks crackle and drag.” I think that’s what she wrote, but I’m a dude and too lazy to look it up.

9. Who would you be if you didn’t have CF?

CysticGal: Clearly, Angelina Jolie. Without all the adulterous and bizarro family stuff. Just the kids and the famous actress and Brad-Pitt-as-husband parts. Oh yeah, and she’s dead sexy- like me. I’m sure if you asked Angelina Jolie who she would be if she had CF, she’d say, “Cystic Gal.”

UnknownCystic: That’s funny, CysticGal, because I’d be Brad Pitt. Actually, I don’t like Angelina’s tattoos. I’d be Brad Pitt but with my wonderful wife and daughter. Sorry, love is love and hard to find.

CysticGal: Awwww, that’s sweet. And lame! Just kidding.

10. What career would you have if you didn’t have CF?

CysticGal: If CF exists, I would be a child-life specialist at a hospital. I think that job is the best but can’t really do it because of all the infection control issues. If CF doesn’t exist, I would be . . . ME, but with lungs that worked.  I think I’ve done a pretty good job along with having CF. And maybe I’d be fat, which I wouldn’t like, but, you know. Win some, lose some.

UnknownCystic: If CF exists, a scientist to help cure it. If CF doesn’t exist, a Chippendale’s dancer to help cure something else. Does anyone have change for a dollar?

(Thanks to everyone for reading and to CysticGal for her wisdom, charm and grace. I can a learn a lot from her, I think. I’ll ponder that question right after I finish playing Wii all night, eat a California roll or two, and drink a six pack of Old Milwaukee. What was the question again?)

10 things I’m asking for in my next life – a post for CF guys

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My apologies to the women in my life and those who read my posts.  This one is for CF guys and my Twitter friends CFFatboy and rlcarroll.

In my next life, free of f’ing cystic fibrosis, here’s what I want:

10) I want to be the man that men driving monster trucks never make eye contact with lest I come over there and kick the s**t out of their truck and them, then get the phone number of their date.

9) When the preening guy driving the Audi in front of me at the McDonalds drive thru throws his cigarette out his window, God, let me be the man who tells him to pick it up – and watch as he does.  No, scratch that last part.  I want the Audi guy to apologize and eat the butt to show how sorry he is.  Then I want him to pick up the cost of my McGriddle, giving me the thumbs up as he drives away spitting out the taste of the tobacco and filter and parking lot grime.

8) Give me the option to appear in adult films with “giant” in the title. Not that I’d do it, but it would be nice to know I had the option of this career path. (Also, let me punch the WordPress guy who designed an “8” and a “)” to automatically become a smiley face.)  😦

7) 250 pounds, 6’5′ tall.  Pretty simple.  I want to be able to see over the offensive line on my way to six Super Bowl wins.

6) Let me run a mile in under 4 minutes – in a movie. It will be the running chase scene equivalent of the car chase in “Bullit.” No stunt double necessary.

5) Give me the charm of James Bond and Warren Beatty.  Also, I want a 007 license to shoot idiots like the guy at McDonalds. I don’t want to kill them because nothing turns off the stripper you’re on a date with like killing someone in cold blood. And the police paperwork. No, I’ll just shoot them in the leg.  Or, the car.  Let me shoot their car.  That’ll get their attention.  The next time someone cuts me off on the freeway.  I want the ability to shoot their car. and make it go up in flames.

4) I want a jet car.  That’s right.  I want a rocket engine in the back of my car and one of those police business cards for getting out of tickets.  This way no one will be cut me off and I won’t need to shoot them or their car.

3) I want Ultimate Fighters to give me a head nod when they see me – respect. I also want them to give me a wide berth when walking near me out of fear of what I’m capable of. I want to be a walking, slightly unstable nuclear reactor.

2) Black belt? Red Belt? Not enough. I want a new color belt that only I was awarded. Oh, and I want to be able to break a stack of bricks with my p***s.

1.66) I want to play the guitar, hang out and jam with Springsteen on weekends talking about “Thunder Road.”

1.50) I don’t want to do any medical treatments of any kind. I don’t want to have see a doctor until I’m 80 because that was the first time in my life my digestion went south or I had a cold. No nebulizers, no pills, no hospitals.  If I have any of these in my life, God, then expect me to treat you like the monster truck guy.  No coughing either.  Not one.

1.33) I don’t want to eat Broccoli or anything else a horse might eat.  Steak and McGriddles and Pizza.  Let that be my fuel.

1.15) Let me always respect women.  For without them, this list would be pointless.

1.1) Please make sure I marry the same woman I’m married to now. They don’t come hotter, braver or smarter.

1) Forget numbers 2 through 9 and just bring me back as the God of Thunder. Ladies dig the GOT. That will be just fine, God. Then you can rest. Scratch that. Cure CF, then you can rest.