Monthly Archives: April 2010

Eats, shoots and leaves – 140 character limit on Twitter

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I enjoy Twitter most days. Not all, but most.

The challenge is sending comments into the void and not knowing their impact.

I’ve taken a “if I like it and think the tweet is funny, I’m sending it” attitude. Certain times I have laughed by rear end off writing a tweet only to have it bomb and get no response back, which is the case most of the time.

Here’s my favorite tweet that bombed because I messed up the meaning.

@cffatboy in the hospital is like keeping a wolverine in your bathroom. At some point, U R going to have go in there & it won’t be pleasant.

I wish I had written:

@cffatboy in the hospital is like keeping an angry wolverine trapped in the bathroom. At some point, someone is going to have to go in there and lose an essential body part.

I would have violated the 140 character limit. Oh, well. I feel better now that I got it out of my system. I thank CF Fatboy for his guest post, which made me laugh so hard it helped clear out my lungs.

And though I blow off steam on Twitter, I truly appreciate the people, CF Fatboy especially, who I have met and learned more about. That part of Twitter is special and I value it above all else.

Tweet on, my friends, tweet on.

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The Power of Two – Coming Soon

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The Power of Two - Coming Soon

Check out this new documentary

I just watched an excellent trailer for a new documentary coming soon.

It’s called The Power of Two and its subject matter includes cystic fibrosis, different cultures, and my favorite subject of overcoming great odds in life.

I won’t say anything else other than the trailer hooked me. I’ll get my popcorn ready.

Here’s the link: http://www.thepoweroftwomovie.com/

10 things I don’t want to hear from my PICC line nurse

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I’m going through man-a-pause. No, that’s not on the list, but it should be.

It was all I could do today to keep from using ALL CAPS in my tweets. The number of tweets I didn’t send was higher than the number I sent. I told CF-mum Lorraine I dug her. I started three blog posts and stopped. Strange day.

I also listened to Captain and Tennille’s Love Will Keep Us Together and enjoyed it.

So, when in doubt, go with frivolity and horseplay.

10 things I don’t want to hear from my PICC line Nurse:

  1. Where did those buff arms go?
  2. Hellooooooooooooo, to my first solo insertion.
  3. Neck or groin? Tongue depressor or leather strap?
  4. Nursing school in Tahiti rocked, dude!
  5. Rambo never asked for a shot of lidocaine, dear. And he had to stitch his own arm.
  6. Does Red Bull ever make your hands shake like this?
  7. Do I feel warm to you?
  8. Mind if my lover, Bart, watches?
  9. It’s okay, 5-second rule in effect for dropped needles.
  10. Cystic fi-what? That can’t be good.
  11. (bonus) Holy crap! It is sticking out of your ear and I just . . . threw up in my mask.

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Letter to My Daughter – April, 27 2010

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The Lessons of Blogging

I started this blog for you – I think. It’s not quite what I thought it would be. But that’s not a bad thing.

I had good intentions. However, now it travels in its own direction.  And frankly, I’m not sure what direction that is.

Like a kite ripped from my hands by the wind, it floats away in an unpredictable course – high up there in the blue, its shape almost unrecognizable now.

But I’m enjoying the ride. And learning a lot. Mostly, how strong other people with cystic fibrosis are and how weak I’ve been at times. Perhaps, I always knew this. However, when I coughed up blood last week, I was a little less stressed about it thanks to my new friends.

I don’t know how much longer I’ll keep this up. The realities of CF always seem to overcome me and I go back into hiding and come out with a new identity. We’ll see. It’s strange how you can care about people you’ve never met, but frustrating that you can’t do more to help them.

Be well. Take care of your mother.

Love you both.

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Monday Musings: Malcolm Gladwell, rapid cognition and CF

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In his book Blink, Malcolm Gladwell explains the importance of thin slicing or rapid cognition in decision making. He states that these terms are not “gut instinct,” but rather an educated decision made quickly based on the conscious and unconscious minds. And, rapid cognition is usually more trustworthy when making decisions than an analyzed decision made over time.

What’s interesting is how Blink applies to battling cystic fibrosis.

One of my favorite books by one of my favorite authors.

What facts do we really have to go on with CF? We have our interpretation of the facts and others’ interpretation. Apologies to Mr. Gladwell, who can call it what he wants, but we need our CF “gut instinct” to help us make decisions.

Example: On cysticfibrosis.com last night, a mother of a CF child asked about the order of meds her clinic was recommending. I replied with my order and logic. A man replied with the opposite order. Who am I to tell him that pulmozyme before HTS doesn’t work as well as HTS before pulmozyme? He says it works best that way for him. Who is correct?

Or, jokingly, who is more correct?

We are given some tools (meds) by doctors with some guidance, and we choose some of our own, such as supplements. Many times, it’s up to us to determine which tools to apply and how to apply them based on our research, our experience and our gut.

The mother was questioning the clinic’s decision because her experience, or gut instinct, told her their decision was incorrect and less effective.

Now guess which group of professionals “thin slices” daily. They’re highlighted in the book – doctors.

Doctors need to make fast decisions. They interpret the evidence and what it tells them, then go with it, rarely second guessing. Bang. That’s it, patient diagnosed. Move on.

Have you ever experienced the moment with your CF doctor when you’re trying to decide whether you need to be admitted or not?  The decision is borderline, hovering, waiting to be made. Some signs point one way, some the other.

What tips the scale one direction or the other?

You sit there thinking, processing, clock ticking, looking at your doctor. Who blinks first? Your gut, or your doctor’s?

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Fox pays me a visit

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The Trickster

Last night, Fox came to visit.

Fox: Why are you sleeping?

Me: I’m not.

Fox: Your PFTs went down.

Me: I know. I was there.

Fox: What are you going to do about it?

Me: Cry like a baby.

Fox: This could be the beginning of a bad trend.

Me: Crying or falling? What can I do?

Fox: You’ve fallen before. Get back on the bike, literally.

Me: I’ll bleed.

Fox: There’s always a trade off.

Fox left.

I sat in the dark, thickheaded, and pondered what the annoying trickster had said.

Do I have any tricks left of my own?

The clock is ticking.

– – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – –

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?)

Getting ready for Friday’s Thriller in Manila

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Well, Gentlemen, it’s on – Cystic Fibrosis defined by the sexes.

CysticGal has accepted my blog challenge.

Tomorrow, the battle of CF wits takes place here and on my opponent’s web site.

Here’s my training plan for Friday:

  1. Wash down the venison burger I ate for dinner with a bottle of Tequila.
  2. Roll out of bed around noon to write.
  3. Forgo the shower cause I need a healthy man musk going for this one.
  4. Spend some “me time” reading on the can.
  5. Change the oil in my Trans-Am.

I’ll be ready to rock n roll. See you here on Friday.

PFTs, Body Blows and Advice from the Fox

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Sometimes a CF punch doesn’t knock me down.  Sometimes its a good punch to the body and takes my breath away,  but I regroup.

That’s why I hate PFTs.

Today, at my post hemoptysis appointment, I took a punch. Not a terrible punch, but I felt it.  PFTs were down a bit but not terrible. Not enough to warrant a jail sentence.

The psychology is tough though: Can I regain the lost lung function?

What would the fox do?  I ask.  “Benzyl Isothiocyanates,” says the fox.

Oh, well. I’m still in the fight. That’s the good news. Not sure what I’m going to do about the hemoptysis in the long run. Got the “1% chance embolization can cut off blood supply to your spinal cord” speech.

Wet my pants and went home. Ate my broccoli and slaw and strategized my next punch.