Tag Archives: cystic fibrosis

Saturday Funhouse – My Ideal Hospital Room

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[Adult language]

My good pal @seanset, http://seanset.posterous.com/, wrote a comment here moaning and groaning about me not writing a Saturday Funhouse for awhile. How the hell did that happen?  Thanks, mate, for reminding me. Here you go. This one’s for you. And yes, I know it’s Sunday Funhouse where you live.

My Ideal Hospital Room

No jumpers, please. The first thing I’d add to my room is a balcony. I’d like fresh air each day without having to gear up with a mask and gloves and endure the fearful looks from people in the elevator (yes, idiot person who moved to the back, as if that will really help, I have the Bubonic plague, but they let me roam the hospital to drive up revenues with fresh patients).

Each morning I want to pop out of bed, I.V in tow, and take three steps to the great outdoors, yelling: Hello, World, I’m still here, ha ha ha ha ha ha, the joke’s on you.

Imagine cooking outside your hospital room. Rocking. How do you like your steak cooked, Fox?

How nice would it be to sit on the balcony in the morning reading while doing treatments? I could wave to my fellow CFers on their balconies. We could have a contest to see who could make the funniest voice with the vest turned to max. Then we could see who could spit farther, which might be the reason they don’t have hospital balconies in the first place. Not exactly the image the hospital wants to promote with a bunch of us sitting in our underwear spitting on the roof or gardens below.

Imagine people driving up to the hospital watching patients on the balconies doing nebs. Might be too much for them to take. Not us, cause we’ve been to places no one should have to go. So there. Roll up your windows when you drive by, people. BTW, I’d hang some laundry on the railing just to give it that old apartment-building look. And I want the BBQ in the picture.

You can’t make me go in there. I don’t take showers in the hospital. I look at that dark, nasty chamber and connect it to the thought of how lazy the cleaning staff can be. You’d need a team of football players to force me in there (or two drunk Victoria’s Secret supermodels). The shower is bacteria heaven.

Let's torch some bacteria, friends.

I read that some gas stations, or petrol stations in England (you’re welcome for that translation, Sean), have self-cleaning bathrooms. Perfect. That’s how I want my hospital bathroom to work. I want to be able to press a button and watch the entire bathroom sprayed down in bleach. Then I want flames to light it up like the “Backdraft” tour at Universal Studios, killing everything the bleach missed.

Finally, I want test swabs done to make sure nothing is living in there that I don’t want living in me. After all of that, I’ll take my shower with confidence. Girls, show me that pose from page 27 again.

Trying living in the Material Girl’s laundry basket: I want a room bigger than Madonna’s smallest walk-in closet. It’s amazing what a difference an extra 20 square-feet makes when it comes to your mood and health, and where you put all of your shoes if you’re a woman. How about designing a CF room that doesn’t make me feel like a caged animal gone mad during two weeks in the hole?

Come on, hospital bed, let’s do the wave. Have you ever awakened covered in sweat because of the plastic hospital mattress? Plastic doesn’t make the best material for temperature control. However, and this is true, when I was 16 I got a waterbed. And it rocked – and rolled. It was AWESOME to sleep on. It had a plastic mattress with temperature control and heated water. That was the trick. In Winter I was warm and cozy and could sleep with only the top sheet of my Spiderman bedding.

Now this is a waterbed fit for a hospital

Now as there are a ton of needles in hospitals, waterbeds may not be the best idea. Can you imagine pressing the “I want my nurse now“ button and saying, “my water bed just popped. Oh, and can you bring in some towels and fresh scrubs because my wife and I are soaking wet.”

Let’s hang in Unknown’s room. I cannot tell you how many times I have come close to going “rock star” on the crappy TV with no good channels and fuzzy reception. I came this close to ripping it off the bracket at Cedars-Sinai once and tossing it out the window. Had I been a rock star, they would have just billed me. If I had done it, I would have been fighting back the cons in the L.A. Jail. So, for us time-share hospital patients, let’s load up the room with the finest entertainment center available.

I want a 52-inch HD, 3D flatscreen with every f***ing channel in the world. That’s right, in the world. I’ll even watch those crazy-ass soap operas from Brazil. I won’t understand what they’re saying, and won’t care because everyone looks tan and pretty.

I should have taken a photo of the remote last time I was in. Here's one that looks and functions just like it.

Don’t forget the sound system. I need to block out anyone yelling “nurse, nurse” from the other room. I want people to think there’s an earthquake and it sounds a lot like the battle scene in Avatar.

Lastly, give me a remote control that selects channels up and down and that doesn’t make me want to inject Drano in my IV because I just passed the channel I wanted and now I have to go through 20 crappy channels to get back to the one I passed. Whew, that’s a mouthful.

To the joker who invented that piece of shit remote, I’m still looking for you and will one day take the reverse gear out of your car. They’ll be no backing up for you after that.

Some of us work for a living. I’ve said this many times – give me a desk and chair. I work when I’m in the hospital. This ain’t no holiday, people. I have a family to feed and insurance to keep. Help me keep it, hospital room designers. That way I can come back and use my insurance again, as opposed to doing my IVs while pushing a shopping cart on the streets of downtown Los Angeles.

Design a desk and have it pull out of the wall like a Murphy Bed or something. Get with the program of the digital world we live in – the one that doesn’t go away just because you’re in the hospital.

Here’s one from Fox: Thanks, Unknown, for giving me one, you generous bastard. Fox here. Look, my fox friends, nurses have heard every line you’ll ever come up with. There is nothing you can say with your golden tongue that is going to catch one of these intelligent, caring women. Even though they wear pajamas to work, which is cool, you have zero chance of getting them to change into something more comfortable – they’re already comfortable in their nurse PJ’s and Crocs. So, you have to trick them in a different, more subtle way.

This is what I look like without the bag over my head

The water bed is a great first step. Nurses love water beds and will want to test it. When she gets on, bump up the wave action and wait for the fun to begin. You say: “Look who fell into my arms. Que romantico. My name is Fox, and I come from an exotic land called Brazil. I will kiss you now.”

Second, and this is the bait of all bait, put a stripper pole in your room. Always say it’s for exercise and the docs won’t barf all over the idea. When the doc is gone, the patient will play. No nurse can resist a pole in the room (except the one in Louisiana who’s going to write Unknown a nasty comment for this post).

Now gents,  you have to stay cool and subtle and say it like this: “What’s a little spin around the pole going to hurt? It’s a great way to get over the barf storm Mr. Wilson just coughed up all over his room?” Be encouraging. “There you go. That’s it. I’ll just be sitting here reading on my iPad. You go ahead and get crazy. Oh, yeah. Wait, let me crank the AC/DC on this awesome sound system. That’s it. Did they teach you that in college.” [the rest of Fox’s post was censored because, well, you can only imagine what happened next – out came the beer and dollar bills. Then all hell broke loose when the nurse twins came in. Oh, my, Fox. What am I going to do with you?]

Last words . . .

I’ll be playing the lottery tonight, hoping I win big and can have my hospital build a wing just for us. We’ll party like it’s our last and live the rock star lifestyle with IV’s in our arms, a neb in our mouths and a cold beer in our hand. It will be the hospital of choice for those of us who value partying. Let’s drink shots from our Flutters. What the worst that can happen? We’re in the hospital, damn it. Code Yellow, drunk fox peeing off the balcony again.

Live the high-rise life.

The Pebble Game

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“Whether you think you can or can’t, you’re right.” – Henry Ford

Who has ESP in the family? I do.

I schooled my daughter in the art of non-verbal communication last night. We played a game where she hid a glass pebble in one of her hands and asked me to identify the hand with the pebble. I went six for six until she got mad at me and quit.

At the point I was three for three, I hinted at how I was doing it by reading her eyes, facial expressions, and white knuckles around the pebble. However, revealing the magic didn’t help her fool me. And she did try to fool me by looking at the wrong hand on purpose, which told me to choose the other one.

It took awhile to get to six out of six because she threw little tantrums a couple of times and tried to fool me with no pebble in her hands, which I guessed she was doing, even though she fibbed she did have it in one hand. Then she got mad because I guessed she was fibbing.

Once she calmed down, I went through the techniques I used. I also explained to her that at the beginning of the game I said to myself  “I can do it. I can guess the correct hand each time.” I was confident of success. I also visualized in my mind being able to guess the correct hand. Zip, right over her head that last point went.

I’ve used the Henry Ford quote with her many times when she says “I can’t.” I reply, “I guess you’ll prove yourself right then,” which makes her blow a gasket. She tries to prove me wrong by doing it, which makes me the Reverse Psychology King. (It’s always good to be king of anything, even when you make up the title yourself.)

The pebble game made me think about how clairvoyant I am at guessing which hand a pebble is in but how bad I’ve been at predicting the future. In the past, I have thought, my lung function is screwed forever, or I’ll never make it off this plane alive, or my bacteria will never be sensitive again. I have been wrong so many times.

Why is it easier to visualize the worst case scenario and not the best case? I need to do a better job of practicing my own advice by saying “I can” more often. I can handle what CF has in store for me. Oh, how I’d like to prove myself right on that one. We’ll see.

Three wishes

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[No medical advice is given in this post or any other post on this site. Please see disclaimer in left column.]

Last night I fantasized that I had three wishes for cystic fibrosis.

I wished for a cure for all CFer’s, our lung function and digestive issues restored to normal, and lost warriors returned to life. These wishes came to mind in a heartbeat. But as my mind soaked in the warm bliss of fantasizing that all of these could come true one day, I changed my mental game to think up more immediate and practical wishes. (There will be a cure one day.)

If only it were as easy as rubbing a bottle

So with my brain-game rules changed, I wished for the following:

1)  BITC gets tested, launched, and becomes the most effective CF treatment ever. What would be more fitting than Melanie Childers and Sharktank.org delivering the grassroots knockout punch to CF? Karmic justice at its finest. My fear here is that BITC with its great potential will take mainstream science and medical companies too long to get moving. Hello, CF Foundation or rich donors? Time to step up with some research cash and get BITC  fast-tracked, as you don’t want to say “would have, could have, should have” years from now on this potential game changer.

2) All CF clinics deliver a high-standard of care. Years ago, my clinic had really lax standards – they used a peak flow meter to test lung function. As a result, my numbers went down and I lost some of my lung function forever. In came a new, excellent team with mandatory quarterly visits, PFT testing at clinic, and I.V.s when PFTs drop 10 percent or more. I’ve read others’ blogs and discovered that some clinics sound like my old clinic and are not being aggressive in treating CF. Thank you to the CF Foundation for setting higher standards for CF Centers. My wish is for them to push harder and ensure all CFer’s get the same high level of care. Oh, yeah, how about getting trial drugs out sooner? Please.

3) Every state automatically enrolls its residents in the organ donation program. Individuals should have to opt out of the organ donor plan, not in. This would help a lot of CFer’s and others waiting for organ donations. It seems like such an obvious change and I read that some states may move in this direction. Yay. Move faster, please, as a country.

X) This one is complete fantasy. I wish CF had a physical presence and I could hunt it down and kill it. But I wouldn’t kill it right away. I would torture it. And I would have no guilt about doing so. Imagine the worst, most painful torture scenes you’ve ever seen. I would do that and more to CF and it would feel so good to make it pay for the suffering it has caused to CF’ers and their families and friends.

Those were my immediate wishes. Now all I have to do is find a genie bottle, rub it, and make my wishes. Don’t be surprised when you wake up one day in perfect health and you hear screams coming from the other room. It’s just me with an ice pick engraving names into CF’s flabby skin.

Stay well.

Letter To My Daughter – 7/11/10

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Here is the actual auction picture.

Dearest,

I’m embarrassed to write that last year, while in the hospital, I watched a Barbra Streisand auction live on the Internet. I feel icky admitting it, and blame manapause and the fact they were selling old pine furniture, all too expensive for me. But something about owning one of them sounded cool, as it came with a good story.

When asked why she was selling so many prized possessions, B.S. said it was because our possession of objects is temporary. She was speeding up the process for charity. Not a mind-blowing thought, but simple, interesting and true.

So, honey, listen closely, and I speak from experience: Don’t fall in love with objects (or boys until you’re 30, which I know won’t be possible, but I can hope).

I think of all the stuff I’ve bought in my lifetime – the shirt I couldn’t live without or the expensive sneakers I had to have that eventually went in the trash or to charity. I could make a list that would unroll like a Greek scroll the length of a football field.

I have spent money and energy on garbage that provided a short-lived Red Bull jolt of happiness. Worse than that, I’ve wasted emotions and experienced anxiety on stuff I couldn’t afford but thought I had to have.

The next time you buy anything, close your eyes and picture the lifespan of that object from the moment you purchase it to its end. Are you going to use it for a long time? Will it end up hidden in a closet in two months and given to Goodwill in two years? Is there a way to buy it used, like the furniture we’ve found on craigslist?  (If you really want to see how items lose their value, look on craigslist, honey. It’s amazing and depressing what we spend our dough on and how much we pay for it.)

If you feel that your happiness depends on that object and you’ll absolutely die if you don’t get it, then walk away. Run away. It’s a losing proposition and it will never live up the hype you’ve given it. Take your time and reevaluate.

All of this stuff becomes baggage and a ball and chain. You have worry about it, lock it up at night, put an alarm on it. It gets scratched or damaged or breaks when your 8-year-old daughter drops it (sorry, you’ve been pretty good at breaking a lot of stuff over the years, especially Christmas ornaments). So, if it’s fragile, you’re going to have to worry about it twice as much.

storyofstuff.com

Know the true cost of an item. We watched Story of Stuff together. Watch it again. Cheap items from other countries aren’t cheap. They come with a long-term cost to world pollution that we don’t quite understand yet, but your generation will.

Know what is truly important in life. I wish I had had a parent to share some wisdom on this subject. It’s your family and friends that matter the most, not objects, unless of course they’re statues of me (couldn’t resist that one. Perhaps a small shrine. Joking. No shrines. How about a Play-Doh bust of me mounted on a pike in front of the house? Hmm, too gory.)

You’re on the clock. Your time is limited. Don’t worry about owning stuff. As they say, it ends up owning you. Make sure whatever you spend your money on will truly deliver happiness for the long term.  Otherwise, it’s not worth the price.

Remember, you had as much fun playing with a giant cardboard box as you did with that pricey collection of Webkinz animals. Find the boxes and save for a rainy day. Please.

Love to you and your mom.

“Oh while I live, to be the ruler of life, not a slave, to meet life as a powerful conqueror, and nothing exterior to me will ever take command of me.”

Whitman, Walt

Sweet and Sour Gummi Worms

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If I were an M&M . . .

We haven’t told our daughter about cystic fibrosis yet.

She visits me in the hospital, and will many times in the future. She sees me doing daily treatments, and is here when the agency nurse draws blood while I’m on home I.V.’s But we haven’t given any of this an identity yet.

We treat my CF like a business, or business as usual, with no emotions when I leave for the hospital. It’s a way of life and is like me going on a trip – one she can join on weekends.

I can’t say if what we’ve done is right or wrong – it’s how we’ve handled it. And it seems to work for us. Our daughter loves life, thinks completely about herself and her world and how many treats she’s going to get and how much Wii time she’ll have and just how much fun she can have in a day. That is what I call completely normal behavior for a happy 8-year-old.

I must have the brain of an 8-year-old because I think the same way – when can I have my M&Ms today?

If we gave the battle a name it might zap her buzz. And one day we may have to zap that buzz, but why do it any sooner than we have to?

That’s not to say we’re doing the right thing by hiding it. We each do what’s best for us. We just never mentioned it and are hoping we can prolong it as long as possible. We may, one day, wish we had introduced it earlier, having backed ourselves into a corner. We’ll see.

My wife and I don’t really talk about CF a lot anyway, except for the bills it generates. We try to ignore it, hoping, perhaps, it will get bored and go away. How much broccoli do I have to eat to make that happen?

But my daughter is starting to become aware of my limitations or lack of wind power.

We were scootering up a moderate hill yesterday. My wife, the aerobic animal that she is, shot to the top, while my daughter hung back. I thought it was odd the little scooter maniac stayed behind, as she doesn’t like anyone to ride ahead of her, inheriting her competitive streak from me.

“Why aren’t you up with your mother?” I asked.

“I’m waiting for you. Can you make it up the hill, Daddy?” she asked, in a gentle and loving voice.

Available at the Sweet Factory

Earlier in the evening my wife and I were talking about going to a concert at the Hollywood Bowl and I remembered the big hill you have to climb, which might cause hemoptysis. Little Miss Elephant Ears must have overheard part of the conversation.

So, it was sweet that she showed concern for me in the sincere way only kids can do. But it was sour at the same time that CF created her concern for me.

 

I’m lucky. I’m lucky. I know. I do know.

But some days CF tastes like a sweet and sour gummi worm – with its brief sweet taste and sour punch – Doctor says: “Your heart is in pretty good shape considering CF” – sweet. “There is, however, mild pulmonary hypertension” – sour.

To which I reply: &$% you, cystic fibrosis, &%(* you, you piece of *$^#. Then I feel better. Much better.

Stay well.

http://www.sweetfactory.com/Candy-nbsp-nbsp-Gummy/Sweet-and-Sour-Gummi-Worms-1-LB-/prod_1212.html

Confessions of a Cyster Blog

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A flower seemed appropriate

Tonight, I’m giving a shout out to Stacey Bene and her new blog. It’s great, and I enjoy reading it. Please check it out if you haven’t already done so.

Here’s the link to the blog.

http://confessionscyster.blogspot.com/

Here’s the link to my current favorite post. Love the wit of it despite the circumstances. I’m sending positive vibes to Stacey.

http://confessionscyster.blogspot.com/2010/07/around-and-around-we-go.html

If you’ve been reading my blog in the past month, you may have read my two posts on CFers having kids. Here is Stacey’s touching post on the subject with a closing line I really dig.

http://confessionscyster.blogspot.com/2010/06/these-are-not-my-mistakes.html

Stacey, thank you for sharing your life. I look forward to more of your story and you giving CF a serious ass-kicking.

Rock on.

.

Work Dinner at Benihana

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I hope I can catch the shrimp in my mouth this time

Is there a name for that phobia?

I fear hibachi-style restaurants.

A few years ago, at a fake Benihana in the southern United States, the chef, who was showing off his mad skills with a spatula and shrimp, forever killed my love of sitting in front of a hot flaming grill while eating.

My work pals lied that it was my birthday, laughing as if they were the first group to ever pull this prank. So, I had to sit there sporting a paper idiot-hat while they sang Happy Birthday and toasted me. Happy, happy, joy, joy.

And, as I was the faux birthday boy, the chef had the genius idea to toss me a shrimp to catch in my mouth. Unfortunately, I had missed the memo about it.

When I noticed the grilled shrimp coming at me, I opened my mouth like a SeaWorld dolphin but couldn’t maneuver in time to avoid it hitting me in smack in the eye, which led to everyone laughing their asses off. Oh, funny man, make us laugh, please. Let’s see that again. I didn’t laugh very much when I spent 10 minutes washing the grease out of my eye. Fun times don’t come better than that.

That’s why I hate these ##$*@ places. They bring back bad memories of the “shrimp to the eye” night.

So, last week, when the gang told me the work dinner was at Benihana, I just couldn’t wait to go. Sarcasm alert, if you didn’t get it.

With Benihana being the restaurant choice for the night, someone’s memory flashed on the “shrimp incident.” Then the jokes started rolling my way around noon and continued through dinner. At one point, a pair of safety goggles showed up to protect my eyes from another mad shrimp. Thank you for your thoughtfulness, guys. I’m so lucky.

Light, damn it, light. Oh, screw it. I'm retiring.

Retire before you suck at what you do

At the restaurant, we got the worst teppanyaki chef ever, an ancient bench warmer they called into action when no one proficient at their job could be found. The crusty geezer was counting down the days to the cashing-in of his Benihana 401K and “free fried rice for life” coupon.

This is how much he sucked: He couldn’t flip a shrimp tail into his hat, which is a basic skill they teach you on day one of teppanyaki-chef school. He missed six in a row and gave up. Six? How do you miss six? I could make that shot in six tries. How hard can it be? Evidently, harder than it looks, as was the behind-the-back shot that hit the floor. You’re 0 for 7, loser.

Worst of all, he completely screwed the pooch on my favorite part of the show, the flaming-onion volcano. How do you mess that up? There are only three ingredients: onion, flammable liquid, and a lighter. A six-year-old could torch that baby. Somehow his onion didn’t ignite, much like his passion for the job.

I looked at this cat and wished that CG would get her new lungs soon

Free Drinks on the company

It’s amazing how much some people drink at company functions. It feels like it’s the people who have been in the same position for 30 years and have never moved up. Is it the chicken or the egg? You got drunk at company functions and didn’t get promoted, or you got drunk at company functions because you didn’t get promoted?

One such person, who exceeded his limit, slurred that he was cutting out carbs to reduce calories. When I told him alcohol has more calories per gram than carbs, he mumbled something about not giving up the one thing he enjoyed and turned his back to me. I admit that eating meat and drinking beer sounded like a good strategy regardless of his poor knowledge of caloric intake.

This same guy turned to me later, after he’d forgiven me for my rude remark, and shared this depressing fact: he felt really bad because he’s been attending a lot of funerals lately. Five people he’d known had died in last two months.

You know what I was thinking: I need to get away from this guy right now. I don’t want to be number six. I made sure I didn’t rub up against him. Back luck rising. I started to worry that the chef might lose control of a knife at any moment and I’d look down to see it stuck in my chest. That would be . . . ironic? I survive 47 years of CF and meet my maker at a teppanyaki grill where I’m killed by a guy who can’t make a flaming volcano? I know what my British friends would say: F#*king hell.

When someone finally drove the carb counter home, I yelled out “seat-belts,” and got a funny look back like I was the drunk one. I just didn’t want the driver to be number six.

I was so happy when I left and survived the night. I will do my best to avoid these places in the future. I’ll use the “I’m sick” excuse. No one at work will argue with that one.

Stay safe.

On the Road with My Pal, cystic fibrosis

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Fox taught me to get a hotel room with a stove for boiling nebs.

[Warning: adult language]

Four days on the road

Mush, you CF drugs, mush. Creative Commons - jurvetson

I used to love traveling on business, but now I haul so much CF stuff that it’s not very enjoyable. It feels like I load a dog-sled full of nebs and meds. And it takes a couple of hours to boil and pull everything together. Then I need to make sure I don’t forget anything, though I’m didn’t fly this time, which meant I could drive back, if needed. Still, I’d rather avoid that.

Thanks to my wife, I received a packed suitcase for my trip. She packs enough clothes for a three-week trek across Antarctica. I can change my underwear twice a day, which fortunately I don’t have to do.

I’m not complaining.

A stuffed suitcase is a great perk of being married. I just need to lighten the load before I leave next time. I did promise to bring her back a cute penguin, though there weren’t any at my real destination, Ontario California.

What you can see looks nice. Creative Commons: angelasevin

What do we really know about each other?

Sticking with the Antarctica theme, I’m an iceberg, as are my co-workers. Just like icebergs, we only know the 10% of each other that sticks out of the water. The other 90% remains hidden from view. The longer we work together, the more ice we see. But with me, there is always cystic fibrosis lurking below the waterline.

Only three trusted people at work know I have it. The rest have the impression I’m sick a lot, I don’t like to shake hands due to germs, and I don’t like to talk about being sick a lot. Pretty close, but I don’t think I’m sick a lot.

CF neuters me again

My manager asked me to travel overseas on company business, which I used to do all the time. I turned it down. I just couldn’t do it. I have hemoptysis screwing with me these days, and I already lived through a bloody gusher on a plane across the Atlantic once before. Plus, travel wears me out, which affects my health in bad ways. Not wanting to go through that again, I turned it down for health reasons, which was embarrassing and made me feel like less of a man.

A leak develops - Creative Commons: clearly ambiguous

There’s that CF iceberg again, dragging through the water, slightly more complex than other people’s. Still, I’m lucky, I know.

The joys of saying the wrong thing

A co-worker said to me, “you looked really tired in the meeting.” She made this simple comment three times, as if I didn’t hear it the first time. Why do people always have to comment on the way I look? And why is it always negative? Do you really need to point out circles under my eyes or other physical characteristics? “Gaunt” or “thin” used to derail me when I was younger. I’ve heard it so many times now, who cares. I should wear a bag over my head 24/7.

What they don’t know

What my pal didn’t know was that my mucus production quadrupled the day before, and I was awake until one in the morning coughing it all out. Then I had to get up at 6:15 a.m. – when my co-worker was sleeping – to do my xopenex, two hypertonic salines, and my flutter. Then, I had to get ready for work. All of this took close to two hours.

Who wouldn't want to dream of these?

So, when someone says you look tired to me, I feel like saying, fuck you very much. While you were dreaming of puppies playing, and snug in your Marriott bed, I was sitting in my bulldog-covered boxers coughing up a pile of the stickiest crap you’ve ever seen in your life. Would you like me to show what I coughed up?

When you don’t have anything nice to say, just STFU.

I was pretty tired on Tuesday. I had to grind out the workday. I hadn’t slept well or long; my upper back was killing me, an 8 on the pain scale.  When I hurt it . . . I have no clue. Sharp back pains zapped me when I coughed. And my stomach bothered me all day. Overall, CF did a good job kicking my ass that day. I should have looked tired. But she had no idea why I did.

Zen and the art of keeping your mouth shut

Perfect bag for me. Note the upside down "crazy" on the bag. Awesome.

I had my own “foot in the mouth” incident when I said hello to someone I hadn’t seen in a long time and added: “I hear you’re kicking ass in your new position.” I meant it as, “I hear you’re doing really well.” I forgot she just fired one of the nicest people in the department, a woman who wasn’t a very good worker, but made days brighter. Thus, when I made my comment, she turned red from embarrassment.

I had to quickly explain what I meant. Too late, Mr. Tiny Verbal Dancer, damage delivered and done. I won the idiot of the day award, which goes on my shelf next to a hundred others that I’ve won at work. Yay, oh, yay, Communications Master, just STFU in the future.

I’m thinking of becoming a monk, the type who takes  a vow of silence. The only problem is there’s still non-verbal communication. I’m sure one of my fellow monks would look at me, make a sad face, and then use his finger to trace imaginary half circles under his eyes, which is the monk-way of saying “you look tired.”

I, of course, would use non-verbal communication right back with my middle finger – the universal way of saying, just STFU.

Stay calm and quiet.

100th Blog Post – Thank you – See you in a week

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The above video includes one of my favorite songs. If you like music while you read, please press play.

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To everyone who has visited and read my posts and the comments, I have the following words for you:

Thank you. Thank you, so much.

I started this blog to leave a record for my daughter detailing my fight against cystic fibrosis. It has evolved into something more.

Much younger here, she's everything to us.

I say this from my heart: this blog became better than I ever imagined thanks to you, my friends.

With your help, it has evolved into something I never expected – I got more back than I put in.

When I felt like quitting the blog, you kept me going. During my recent jail stay, you gave me the strength to find the humor to fight CF – to say, I may bend, but I will not break from CF’s cheap tricks and mind games.

And, most importantly, the lesson my daughter will take away from this blog will be greater than my words alone.

It will be a message of hope delivered by others.

My daughter will read the comments and learn more about the people who took the time to write them. She will discover that the heart of the blog lives there beyond my individual thoughts. It is greater than I, and tells the following story: one cannot fight cystic fibrosis alone – it takes a team of the finest minds and hearts, and the courage they share, to defeat this brutal, complicated disease.

I have work commitments this week. It’s the perfect opportunity to take a week off from writing and reflect on the next 100 posts. It’s my hope they’ll be even more rewarding and that together we will find new strength to crush CF until its life blood drains into the gutter, never to be heard from again. Hope is on the way and it carries a very big flail.

I reflected on the 99 previous posts that Fox and I wrote and tried to identify my favorite. One post kept coming to mind. And of course, it features you know who – she of Jimmy Choo shoes, and Pink Bunnies and all things soft – she with the ability to transform darkness to light, words to sweet-smelling daisies, and toads to handsome doctors – My friend, Cystic Gal. Here’s the link:

https://unknowncystic.wordpress.com/2010/04/23/cf-blog-throwdown-dude-versus-the-lady/

Stay well – Fight hard. See you in a week.

p.s. If you’re wondering about Fox, he is in a Las Vegas jail right now. Last night, at the Hard Rock Hotel, he punched The Who’s Roger Daltrey, who according to Fox, made a pass at Ginger. I think Fox can use a few days in the hole to reflect on his actions before I bail him out, don’t you?

Fox’s Communications Tips: Speaking to RTs

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Grrrrrr,

Dreaming of Princesses

Fox here. I’m hung over and irritable because I loaned my nurses to a blogging buddy and he’s not returning my calls. I hope my team comes back in time for my midnight dose.

I’ve spent the day deep in thought about Unknown’s problems in the hole last week. I’ve boiled it down to communications, meaning crappy verbal skills on the part of Unknown.

So, I thought I might share a lesson I gave his highness on how to communicate better with RTs. Here are the role-plays I designed for him.

Lesson 1: “It’s all in the wrist”

RT gives you a med you don’t take

RT: Hi. I’ve got your Pulmozyme.
Fox: I’ve got your Pulmozyme, too.
RT: What?
Fox: Yeah, I got it right here.
[Fox sticks paw in pocket. Pulls paw out flipping the RT the bird]
Fox: See, here it is, and it says F U Pulmozyme on it.
RT: How dare you.
Fox: How dare you, SIR, for bringing me a medicine I don’t take.
RT: It’s in the chart.
Fox: That chart needs to go up the person’s ass who added Pulmozyme to it.
RT: There’s no need to speak like that.
Fox: Since when is “ass” a bad word?  Is it because there’s a chart sticking out of the ass? Does that make it bad? It’s because of the image it creates, isn’t it? Chart hanging out of ass, that sort of thing. Would it be better if the Pulmozyme was sticking out of someone’s ass?
RT: [leaving quickly] You’re crazy. I’m leaving.
Fox: You go ahead and do that. I’ll be here hyperventilating because you almost killed me with the wrong medicine.

Lesson 2, version A: “Liar Liar, pants on fire”

RT shows up late with your morning meds and you’re caught red-handed doing your own

RT: You’re already doing your meds?
Fox: Yep.
RT: Where did they come from?
Fox: [lying] The other RT brought them
RT: The other RT?
Fox: Yeah, the other one. He looked like you, but different. He was bald
RT: When was this? Bald?
Fox: Not too long ago. No, he had blonde hair.
RT: You said he was bald.
Fox: I was wrong. He had black hair.
RT: What? Did you get his name?
Fox: Whose name?
RT: The other RT.
Fox: What other RT?
RT: The one that just brought you the meds.
Fox: Oh, that one. I don’t know. I don’t work here. Don’t you guys know each other?
RT: I don’t know who it could be.
Fox: He had a limp.
RT: A limp? We don’t have anyone with a limp.
Fox: [holds the neb away from his mouth like poison] You have me worried now, man! This could be rat poison delivered by a bald guy with one leg. Who brought me these meds? Was it a real RT? Are these the correct meds? I’m feeling light-headed.
RT: It’s okay. No need to panic. I probably missed it in the chart.
Fox: Oh, okay. Yeah, it’s probably in the chart.
RT: I bet it’s in the chart.
Fox: Charts are never wrong. [crying] Would you mind leaving me alone now? This has been very stressful.
RT: Sure. Sorry about the confusion.
Fox: Okay. I probably won’t file a complaint this time.
RT: Thanks.
Fox: [stops crying] Do me a favor, would ya? On your way out, slide my beer keg against the wall. People keep bumping into it. Thanks. You’re the man.

Lesson 2, version B: “Message from a friend”

RT shows up late with your morning meds and you’re caught red-handed doing your own

RT: You’re already doing your meds?
Fox: No.
RT: What?
Fox: [throws the covers over his head and tries to hide]
RT: [pulls the covers off] You’re doing your meds. I see you.
Fox: No, I’m not. And you don’t see me.
RT: You’re not? But I’m talking to you?
Fox: I’m not and you’re not talking to me.
RT: What are you doing?
Fox: Being invisible.
RT: But you’re still inhaling meds.
Fox: You call them meds. I don’t.
RT: Aren’t they?
Fox: No, it’s beer.
RT: You’re inhaling beer?
Fox: Yep. Yes, I am.
RT: Are you kidding?
Fox: Nope. Would you like some? I’m seeing two of you right now.
RT: You can’t inhale beer.
Fox: I can’t. Sure tastes like Old Milwaukee to me.  Ring, ring, ring. Hold on, someone’s calling. [pretends to pick up and answer an imaginary phone with his paw] Hello, CG. Yes, the RT is right here. [to the RT] It’s Cystic Gal.
RT: Who?
Fox: Cystic Gal. And she has a message for you.
RT: What message?
Fox: She says, “Suck it, UPS driver. Suck it.” That’s classic, CG, Dude. What a mouth she’s got when she’s pissed. And she’s pissed at you, lucky fella. [laughs his fox ass off]

I'm CG's cat and I say "Meow it."

That’s it for tonight. These examples should help old Unknown communicate better the next time he blows a gasket.

Party like it’s your last.

Fox out.