Tag Archives: cystic fibrosis

Letter To My Daughter – 6/23/10

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[Part two of a two-post blog. Here’s part one: https://unknowncystic.wordpress.com/2010/06/22/switzerland-crumbles-neutral-no-longer/]

Dearest Daughter of the future,

If the moon falls from the sky and pulverizes me, or Fox’s girlfriend accidentally mixes radiator fluid in the punch again, or CF takes its final swipe at me, probably on an airplane, please ask Mom to open the file on the computer named “blog post 062210.”

Please read it with her to make sure you do not live your life with a hole in it because I’m gone. I’ll be ticked if you do. I’m not telling you that you can’t be sad. You can. Just don’t let it go on too long. You have my complete blessing to have fun, enjoy life, be happy with what you have, and not be sad for what you don’t.

You have a life to live and a family who loves you. And, one day, you’ll have a mate who will wait on you hand and foot like you’re a queen, just like we, your parents, did when you were growing up.

There is one more very important point I want you to know: Thanks to you being here, existing, I lived a longer and happier life. And you helped me kick CF hard, right where it counts. That is a fact.

From the minute you were born, which finally happened because I made your mother eat PF Chang’s hot mustard that forced you out of your comfy womb house, I had new energy to do my treatments. I became obsessed with taking care of myself because I wanted to make sure I stayed around to see as much of the movie that is your life.

I blew into the flutter like a mad man, up to an hour at a time. My health insurance paid for a vest that I used every day. I never missed a treatment. I ate pounds of broccoli and cabbage every week. I looked for every advantage I could to outfox CF.

I owe my bonus time to you.

Every day I lived with you and your mother was a dream. I’m not sure your mother will say the same thing because sometimes she failed to see just how charming and funny I was every day. But you know the truth, I was.

Remember, always wear your helmet, honey.

I want to leave you with one last memory tonight that I never want you to forget: the times we rode our scooters around the hospital grounds, especially down the parking-garage floors like we were breaking the law, thinking the security guards would catch us at any moment. And the time you did a flying face plant when you thought you could ride through mud. PICC line in my arm, bacteria in my lungs – none of it mattered on those scooters. We had a blast.

You helped me give the middle finger to CF and the “thumbs up” to life.

For that alone, I will always be grateful to you. The rest was icing.

Take care of Mom.

Love,

Daddy

xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxox

Switzerland Crumbles – Neutral No Longer

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[This is part one of a two-part blog posting]

Take a side, you crazy country

I so enjoyed my vacation in Switzerland . . .

A blogger’s recent post has upset me. And I’m not sure why I’m so upset because the blog’s author is someone I respect and who has really given back to the CF community with her brains, opinion, and drive to help others. I’ve read her comments over the years at cysticfibrosis.com. I’m a fan.

And yet, the following post got me heated.

http://noexcusesnoexcuses.blogspot.com/2010/06/families-with-missing-piece.html

A week later the post festers in my mind and won’t go away.

Here’s what bothers me: It feels like the title should really be – If you have CF, don’t have kids because you’ll cause them pain when you die. That’s the hidden message the commentary and the included WSJ article deliver to me. I’m not sure if that was the author’s intent, but it’s my interpretation of her words.

So, let me be clear with my position so there is no gray area: If you have CF and want children, and are able, have them. It’s your decision. That’s as “in a nutshell” and clear as I can be.

I’ll take any heat coming my way for the statement.

My brain for the last week

The blogger writes in the last line: “the focus on the decision needs to be all about the child.” It’s such a confounding statement. My wife and I had a child for ourselves, too, not just the child. I wanted a child so if something happens to me, my wife isn’t alone, though I’ve never shared that with my wife.

But we also had a child because we wanted to have fun and enjoy life as parents. And we put great care into the decision to ensure she will be raised well and by family if something happens to us.

In the scope of life and the unique make-up of families in today’s society, how different is the decision for CF parents to have kids? Should we have to contemplate worst-case scenarios any more than others? What about best-case scenarios?

There are more drugs on the way for CFers than at any time in the history of this disease. The care is the best it’s ever been.

What if someone decides not to have children after reading the post and then lives to 70? Regret like that tastes terrible.

The odds yesterday are not the odds tomorrow. Life changes. Hope arrives.

That’s not to say CF parents shouldn’t think about their situation. Anyone considering having kids should.

I can think of a whole lot of people without health issues who should rethink having kids if you look at potential risks to the child. And that population is larger by far than CF parents wanting to enjoy life while suffering from one of the worst diseases known to humankind. Or, should only a select few who have perfect, ideal lives have kids? How many parents would have kids if that were the case?

The WSJ article bothers me, too. It begins with a hypothetical question: “Would you give up a year of your life to have one more day with your late mother or father?” Hypothetical questions are the easiest to answer. Yet, only 57% answered yes to a softball of a question. Thankfully, 43% saw that the price was too high – one year for one day.

What if the choice had been real? How many would have really made the swap?

There’s a certain paradox to the situation discussed. Would the children who have lost parents decide not to be born? If the parents knew there was a chance they would die, would they have not had the children and would the children be okay with never existing? See, it gets confusing for me.

Life is painful. Who’s to say some of these kids wouldn’t have had the same problems with two parents. And who is to say once they weather the storm of losing a parent, their lives won’t eventually be fantastic. Why not ask them hypothetically if they’re rather not be alive if given the choice?

I’m grateful the blogger wrote the post. My heat has transformed to thankfulness. I will be more prepared to discuss this subject with my wife and educate her with what might happen to our daughter when I’m gone. And I can tell you that had I read the post before having our child, I would have chosen our same path without hesitation. The eight years my wife and I have spent with our daughter have been the best of our lives.

At this point, our Wii-playing, book-reading, Smarties-eating daughter would agree that being here, alive, is a great joy. I doubt she’d want us to go back in time and change our decision. And if something happens to me, she may suffer. But there is also the chance that like a Phoenix rising from the sorrow, she may channel that emotion into something great, whether it’s her love for her family and friends, or playing a wicked guitar to an audience at the Hollywood Bowl.

As long as she’s happy, I’m okay with anything she does.

To be continued . . .

I am the luckiest person alive – Redux

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I have new readers and friends; and several wrote excellent comments this week. I’m thankful they did. So, I feel it’s important, after my recent posts “live from the hole,” which sounds like a great name for a concert album, that I restate something important:

Daddy & Daughter t-shirts because we're learning to play guitar together. This will be a great hospital shirt, too.

I am the luckiest person alive.

That is a true statement. Four-leaf clovers fly from my pockets when I walk. McGriddles fall from the sky. And just when I’ve thought this disease has had the upper hand in the past, some lucky solution revealed itself.

I have survived hemoptysis 39,000 feet over the Atlantic Ocean, and a collapsed lung flying to Texas. I’m not a big fan of airplanes anymore. But I am here.

Every day that passes, even my darkest, I remember how lucky I am to be 47 with a disease that has taken so many others younger and brighter. I’m not sure about the grand logic in life that has allowed such a situation to happen; I feel it’s best not to question my luck, just be thankful that I have it.

I visit cysticfibrosis.com and am a proud member of sharktank.org. I read about the pain CF causes everyday.

I have blogging friends I care a great deal about, especially that crazy pink blogger waiting for new lungs. I hope she gets them soon. I’ve boxed up two McGriddles and some extra luck and sent them to her, and hope she remembers her old pals when she’s running marathons and shopping for new Jimmy Choo shoes in Paris.

Here on Father’s Day I sit typing, feeling lucky that I have a wonderful wife, who is stronger than I and who takes a body blow during each of my hospital stays. I’m not sure it’s the life she dreamed of. I have no idea what she was thinking when she signed up for this joy ride 25 years ago, which has been harder on her. She worries more than I do.

They insisted I get new slippers. Our Lab was playing, nipped me in the heel, and ripped the back out of one of them. Yes, they're gross, CG.

I also have a daughter, which never seemed possible for us earlier in life, but who now steals muffins from the kitchen and thinks I don’t notice. I’m a terrible muffin cop. Life is short, eat your muffins, I think. My wife will have a different and very verbal opinion when she gets back from her run.

I am lucky. I just want to make that clear.

And now that I’ve written this post and am happy someone will comment with “cue the sappy music,” I know Fox will have to post next and get this one out of his system, as he is truly in charge here.

Until then, I am taking the day off from worrying about my job, insurance, potential hemoptysis and everything else ahead of me. I’m going to spend a lot of time looking up at the sky today, not looking down.

Stay lucky and well.

(Message from Fox: I don’t believe what I’m reading. He never learns, this asshole Unknown. He never learns.  This lucky bastard – I’m so tired of hearing how Leprechauns hump his leg. I’ll be putting my paw up his . . .  Oh, never mind. ARGH. Hand me a Schlitz and the MacBook, Ginger, I have some unraveling to do.)

Communication Breakdown

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“Communication Breakdown, It’s always the same,
I’m having a nervous breakdown, Drive me insane!”

-Led Zeppelin

When I started this blog for my daughter, I wanted to leave behind an accurate record of what I went through fighting cystic fibrosis. I’m not sure I’ve accomplished that or not. I can tell you that this week the blog feels as live and raw as it’s ever been. I don’t think I’ve held much back, if anything, for better or worse.

I reread the posts and it has been quite a week.

Don't look down. Creative Commons image

If the week has taught me anything, it’s the dangers of miscommunication. That lesson started in the hospital and extended itself into Friday. I didn’t realize how tightly wound I was balancing work and the hospital stay – there’s nothing like a battery of heart tests to keep you from the laptop and to get you behind in your work.

I know I’ve joked about this before, but it would really help if they had a workstation in the room. I need to figure out something better for future visits. Now that I’m older and cranky, it’s not as comfortable sitting at the bed typing away. If I win the lottery, I’m donating a chunk of dough to the hospital to redo all of the rooms Marriott style. I’ll ask them to name it the Fox Lives Here wing, with pictures of my arrogant pal on every wall.

Despite bringing a printed list of meds with me, the hospital seemed incapable of getting them correct. Some meds never showed up. Some showed up two days into the visit. My favorite part: certain meds I don’t take that weren’t on my list showed up, i.e., Pulmozyme, some stomach med they gave me during the last visit, and TOBI, which is wrong because I take TOBRA mixed for the eFlow.

Each time the RT arrived with a dose of Pulmozyme or TOBI in his hand and a look of “but all of you are the same” on his face, I thought Fox might unleash some of verbal kung fu on him.  Worst of all, then you have to argue with the RT that you don’t take a med.

“It’s in the chart,” the RT says.

“The chart’s wrong,” I say.

“The chart’s wrong?”

“Yes, the chart’s wrong.”

“How can the chart be wrong?”

“That’s a good question.”

“The chart’s wrong?”

“Yes, the chart’s wrong.”

“Oh, okay. I’ll go check the chart.”

“Sounds like a good plan.”

Five minutes later the RT returns.

“It’s in the chart,” he says.

“The chart’s wrong,” I say.

You get the idea of how it goes from there. Usually the last line is “I’ll go check it out.” What he really should say is, “I’m going to go on break and your insurance will be billed anyway.”

There’s always a corkage fee at any fine restaurant when you bring your own wine. Why not at the hospital?

Now I know why playwright David Mamet is a genius when it comes to writing dialogue. He writes it with repetition and that’s how many of our conversations go. The RT dialogue isn’t an exaggeration. It takes place in real-time, rapid fire, and lasts 10 to 15 seconds.

But it happens three times a day.

Then I received the email that sparked yesterday’s posts. When you receive partial ALL-CAPS from someone you respect, it sets off a chain reaction. Here’s the kicker. The primary person who read my original blog post, misread my statements, then placed the misreading on the Internet where other people reacted to it, causing my friend to have to deal with it.

I realized this week that the most important game we ever played in school wasn’t really a game or a joke. It delivered a great lesson, but was usually breezed over with a quick “do you get it now?” by the teacher.

The game I’m talking about is when one person tells a secret to another and the secret travels from person to another until it gets to the last person and sounds nothing like the original message.

What chaps my lips is how this game of “communication breakdown” takes place during each hospital visit. And worst of all, how it’s played with only two or three people working from a printed list of meds. They have a program in their head about cystic fibrosis and insert that program, overriding what’s in front of them – especially the doctor.

I’ll email my clinic later in the week about this visit and the story of the printed list. They’re good at dealing with these situations. I’m glad because if I hear “it’s in the chart” one more time, Fox will go postal. Not that I wouldn’t like to see that, but I don’t want to have to switch hospitals. Despite its flaws, I like the one I’m currently at.

Stay well.

Message from Fox – I’m Pissed

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Dear Readers,

Fox here. And I’m a bit irritated with my yellow labrador of a creation, Unknown. Here’s what went down.

Are my eyes dilated? Ginger, help. I can't get up.

I’m standing by the poolside of my buddy’s Malibu Mansion tonight and feeling good about life again. Ginger, god bless her nursing heart, has just given me my fifth dose of poison dart frog. We’ll all laughing because my fur is standing on end and I look like I stuck my paw in a wall socket.

Not to mention that I’m wearing Ginger’s panties, which say “I love foxes” on them. They feel comfy, but they’re riding up my ass, but I can’t do anything about it because my paws aren’t listening to me and because they’re paws. Nobody’s lending a hand, they’re just snapping pictures and laughing.

So, I’m pretty messed up. I have to use Unknown’s Xopenex just to breathe again. My tail is stiff as a rock and I’m knocking glasses in the pool every time I spin around. The pool is where we have that damn ER doc that made Unknown wait six hours. Couple of my pals, Badger and Skunk, have tied him up and are dipping the dope upside down over and over. Six hours is the goal. After that we’ll give him the bill and kick his ass out of here.

Great times, right?

Yeah, that’s what I thought. That’s until Bambi comes strolling out with her MacBook Pro open. She’s screaming something in French or French-like, but I can’t tell her to speak English because the dart frog has paralzyzed my vocal cords. So, she holds the screen up for me to read.

Holy $$*#*#*$. What has Unknown done now? Unknown has gone and written the post of the century for total wimpiness. WTF is he doing to my blog. I’m pissed. I can’t speak, and trying to type with paws ain’t exactly easy when ya got all your faculties in place, which I clearly don’t.

The gang can see I’m upset. Ginger loses her mind when my eyes start cartooning out of my head. She knocks me down on the mat and goes all Pulp Fiction on me with a syringe the size of an Old Milwaukee bottle right to my fox heart. I spring to life and feel like I just traveled through a worm hole to reality with that ER doc screaming every time they let him up for air. Skunk gives him a blast of bad air, which ends the party on the spot because we gotta evacuate.

Here I am in action. Photo by Neil Phillips. Creative Commons.

Now it’s 12:30 at night and I have to apologize to all my readers for Unknown. I’ve put him back in his kennel. How’s he expect to fight this f’ing disease if he’s going to cry like a baby. He better dig deep and stop the whining or an ass-kicking the size of the moon is coming his way.

I’m sending him off to my pal @onlyz for a few days of Camp Onlyz’s Grow a Pair, where they’re going to surgically repair the two chicken nuggets he’s sporting. He’ll come back a a rabid Akita.

And I say this to cystic fibrosis for the number you’ve done on my pal Unknown this week, one day I’m going to catch you. And when I do, I going to hurt you, and then I’m going to hurt you again. Then me and my pals are going to reenact the final scene of Braveheart, the one with the creepy tools and slab. Except it won’t be Mel Gibson screaming “freedom” this time.

CF, you’re going to wish you never existed.

I may be a fox, but I stand up for my friends.

Fox out.

Fox’s Adventures in Los Angeles – Hospital Time

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Handsome and curious looking for . . .

Unknown is tired after his jail time this week, screaming for the Lakers tonight with his daughter, and no McGriddles in the last three days.

He asked me, humble Fox, to post in his absence. I’m feeling pretty tired too after my quick jaunt to Vegas last night with a couple of gal-pal nurses. Rum Jungle was rocking. I got thrown out again, but that’s not unusual. What can I say? It’s my nature to cause trouble.

Tonight, I’m going to share a few photos from my vacation. There should be more, but Unknown panicked and forgot to grab a fresh camera battery before leaving the casa. Slim photo pickings thanks to that boneheaded error.

The photo below is the first room Unknown stayed in – for 45 minutes. Then he cried like a little lab pup about chest pain and they took him straight to a lower grade room. Learn from Foxy on this one, folks, never talk your way out of an upgrade. They’ll snatch it from you if you do.

Now this is a room for a hospital party!

Here’s the hole they sent Unknown to after he complained.

Welcome to the garden view, Mr. Unknown

Remember when they strapped Unknown to a table and scanned his heart? This is the badboy itself. Those are the two blue straps they used. 20 minutes of hell for Unknown. 20 minutes of napping for me.

Don't move or you'll have to repeat the test

Someone thought it would be funny to erase the hospital information board below. I am Fox, after all. Everything worked out great and the nurse thought it was cute until she read “patient goals.” The smile fell off her face. Ouch, you nasty boy.

Fox out. Picture below. WARNING: Adult language

You got in trouble, you got in trouble. Ha, ha, ha.

Fox Takes Over for the Night

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I am famous, people.

The famous Fox rocks!

I, humble Fox, King of the Vulpes vulpes, received the accolades I am due in @CFFatboy’s blog extraordinaire. Here’s the link so you can read all about me.

The Most Upbeat Article You’ll Read Here. Ever.

I’m honored. Anytime someone stays up until 1:30 in the morning writing about you, with a hot fox named Beautiful at his side, well, how nice is that? Thanks, CF Fatboy, you’re a stand-up guy kicking CF’s green ass. May you live a long life and write about me a dozen more times. I’ll send you some adventures that Unknown is afraid to add to the blog.

Remember, I created Unknown. He sprang from my animal imagination one day while I was taking a beer piss. What a puss I invented, too. Never look up to a cartoon character, my blogging friends, especially one who is a complete fool.

Speaking of her highness, let’s see what unwound in Unknown’s imaginary world today.

First, this is how normal people look to Doctors: Picture a 24-piece Dora the Explorer puzzle:

Easy to solve

This is how Unknown looks to doctors: Picture a 5,000-piece puzzle of a tiger.

It may bite you.

Now you know why doctors start backing out of the hospital room when Unknown starts talking. Here is what the doctor thinks when Unknown speaks: Too confusing. Where does this piece fit? Is this a piece from a different puzzle? Holy crap, there are a lot of pieces. I’ll start with the sides. Oh, screw it. I didn’t go to medical school to solve complicated puzzles like this nut job. I see the world in black and white, as in my black Porsche 911, and my model girlfriend’s white bikini filled with her 100K chest and hips.

I am Fox, hear me growl.

So, some good news. Unknown’s Labrador heart ain’t too bad. He passed the dart frog test. Though he can’t figure how, as he guesses a missing beat every two seconds counts for passing. Jerky Unknown, you lived through it. That’s a passing grade. Get back in the F’ing casino – you got a movie to finish.

Here’s why Unknown ain’t talking tonight. The cardio docs came by and gave him the green light and told him to stop eating chocolate, which makes no sense whatsoever cause he’s been eating chocolate for many months without problems. They played the “blame it on M&M’s” card. But that’s not why he’s pissed.

He’s upset because the cardio docs didn’t fill out their damn report and now he has to stay in the hospital one more night because the main doc won’t kick him lose without their kiss of approval. When doctors own a hospital, don’t expect an early release. There are yacht payments to be made.

Unknown is a sucker on a stick. I would have ripped out the I.V., crapped on the floor and scampered out of there with August and Tiffany at my side, and a few shots of that poison frog they shot him up with yesterday.  Here’s your report, doc, I’d say as I flip him the paw. I’ll email you photos of tonight’s Rum Jungle party in Veg-ass.

Something funny did happen today. The nurse came by and said the pharmacy wanted to know if Unknown had a Symbicort with him or had it gone back by carrier pigeon?

This is two days after he checked into this hotel of hell. Two days. Was he supposed to call in his order for a Symbicort ahead of time, like a chicken fajita at Baja Fresh?

So, the nurse had to take Unknown’s contraband Symbicort to the Rx and they had to place a little sticker on it: Approved by someone who didn’t read a printed list two days ago. What about the other five meds Unknown hid in his carry-on bag?  When do the federales break down the door and bust his chicken ass?  Let’s see you serve a “nickel” in a real prison, pretty boy.  You’ll be begging like a chocolate Labrador pup to return to the hospital and your private “isolation” room.

Last of all, why are the light switches in the hospital room painted red? Shouldn’t a red switch always blow something up? “Pop,” on come the lights. Where’s the fun in that?  Now if it caused Unknown’s bed to blast up to the ceiling, well, that would be a good reason to paint a switch red. Eat acoustic tile, UC.

Party like it’s your last.

Fox out.

Day Two in Jail – Torture Tests

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Day 2 in Lock up, Lock down, Lock Sideways – it’s all a matter of perspective

I woke up on the wrong side of my plastic bed this morning. Reality smacked me with where I was and why I’m here. I can serve the “nickel” of the normal CF prison sentence. This stay has rattled my nerves and tested me. Escape plans fill my mind.

I swear I heard Fox partying in the hallway last night. I have never slept in a noisier hospital wing than the one I am in now. Loud talkers on a cell phone can’t match these people for volume. I miss the quiet floor I usually stay on.

Yesterday’s nurse princess transformed into a nasty, bossy four-foot troll who woke me up for blood pressure around dawn.  No sweet kisses on the forehead here to awaken me from my slumber. Just a nasty lady mustache atop grinning wart lips. 

Hospital communication breakdowns are my favorite. I give them a printed list of my meds but somehow they find a way to f**k it up. They cannot process the fact I take two nebs of hypertonic saline in the morning and two in the evening. They write down what they think it should be. READ THE LIST, people. I will be placing a special note on future lists: “Yo, it’s two, I repeat two HTS in the morning and two in the evening. That’s not a typo.”

Then there is the “surprise test of the day.” Today, I wasn’t supposed to eat breakfast, yet breakfast showed up. Luckily, I had treatments to do and didn’t eat it right away. The nurse stopped me in time. What if I had eaten it and couldn’t complete the tests? There’s another day in the hospital and another 10K all because of a three-dollar breakfast being delivered by accident.

It’s getting harder to hide CF from my managers at work. It was easier to do it years ago when I only went in once a year or every 18 months and I could depend on having a new boss every year. Now, it’s tightrope walking and juggling at the same time. It’s getting technically more difficult to hide the truth. I’m not sure how much longer I can do it. I want to work as long as I can, but CF is screwing with that plan.

Tests, tests, and more tests

My insurance company will look for ways to get rid of me after today. These doctors love tests. And they delivered big time with that love today.

First up was what I call the Survivor test. They injected radioactive Thallium into me, then strapped me to a table so I couldn’t move. Three large boxes circled me, taking images of my Labrador heart. It seems strange to say 20 minutes being immobilized feels like a long time, but it does and did. Holy crap. I have new respect for Survivor games where they have to stand on a stick for 6 hours. The tech made it a constant point to tell me not to move. I didn’t and couldn’t thanks to his strap-down job.  

From there I went for the poison dart frog venom test. In this one, they placed me on a table and the same guy who shot me up with radioactive material 30 minutes earlier, dosed me with what must have been poison. All of a sudden it felt like I had just chased Fox out of a downtown L.A. bar and down the block. My chest tightened and I couldn’t breathe. SOB. SOB. SOB. Alert. Alert. Dying here. Shoot the f’ing frog that humped me, damn it.

The techs acted like it was normal to feel like you just ate bad blowfish. FU. Normal this, dudes. The bad guy just poisoned me like James Bond in Casino Royale.  But I don’t have an Aston Martin with a drug kit in it. Why are you standing there? Give me the antidote. I’ll tell you what I did with the “Nurse, Nurse, Nurse” guy from last night. He’s duct taped to a gurney on the top floor of the parking garage. Antidote, please.

It’s no wonder I have a splitting headache tonight. It took me 10 minutes to come down off of that joy ride to heart stretching heaven.

From there, I enjoyed the Fast Pass to my 50-minute echo test.  The three guys working it were cool and Fox had some x-rated guy conversations with them, but it was still painful.

Lunch came after the tests, which was a cheeseburger and fries with three ketchups and no salt. I get the no salt part. I’m in the heart ward. But three ketchups for all of that food? Are you kidding me? Who do I kill?

I got to repeat the Survivor test after lunch. It was just as fun as the first time. Try it yourself sometime. Lie on your bed, with arms at your side, hand clasped over your groin, and don’t move. 20 minutes. Start now.

The rest of the day I worked, barely.  But I did eat more M&Ms in one sitting than I’ve ever eaten in my life. They’re monitoring my heart – WTF. Let it race.

Stay well.

Fox’s day in hell.

I thought it was a dude that woke Unknown for blood pressure. It was the lady stache that fooled me. I’ve woken up next to a few whiskers in my day, but this one was thick, black and greasy. I jumped on top of the TV and waited until she dragged her club foot out the door.

I partied hard last night with the nurses. Loud, lively honey babes charmed by moi. Bambi and Ginger helped me tape up the dude next door who couldn’t master the call button. We laughed our asses off to his duct taped, muffled “nurse” yelps. Press the button next time, dude. Press the button.

The docs punished Unknown for “chest pain” today with more chest pain. Whatever they shot into him is something I want a bottle of. That looked like 10 minutes of rollercoasting while drunk on Gin Ball Twisters fun to me. Gotta get me some of that stuff for tonight’s g-string martini “fiesta of love.”

Party like it’s your last.

Fox out.

Day 1 in Jail and Fox Looks at the Sun

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I’m in jail.

I had a choice: Spend a few days driving back and forth for outpatient tests or go to jail and get them done there.  I turned myself in. And what a fun first day it’s been.

The day started with a tease. They brought me to a room in the new hospital wing. Excited, I was. Alas, reality crushed that dream hard and fast when they realized I needed telemetry.

“Don’t unpack,” the nurse said.

There was a silver lining. The nurse usually worked on the intensive care floor, so when she asked if I wanted her to start an IV before I transferred, I almost got down on my knees and kissed her feet.  Yes, please.  Start away, O wonderful IV Goddess. Stick me, stick me good.

She aced the IV insertion, of course, like nurses from that floor do. No tapping veins or doing rain dances to summon a vein or calling another nurse to do it after you’ve screwed the pooch three times. Bingo, bango, bongo, she was in and blood was coloring the towel placed on my knee bright red. Afterwards, I almost wanted to see if she could do it blindfolded. I bet she could have.

As this nurse doesn’t deal with CF patients, she cracked me up when she told me meds from home would have to return home. Yeah, sure thing, babe. I’ll get right on that.  Where’s my carrier pigeon? I hope it can carry a large bottle of enzymes, two packs of the xopenex dosage they don’t stock here, and the myriad of other meds I brought. Welcome to CF World, Ms Nurse; it’s different from any other world you’ve ever been to. We have our own rule book and it’s 9,023 pages long. Rule #5,879: Always bring back-up meds.

I got to the “heart” floor and was joined to a heart monitor.  Now they can watch every beat and “misbeat” while I’m in my room working.  How exciting that job must be. One lead was off for an hour and no one broke down my door to see if I was still alive, so someone’s not paying close attention. At some point, I’m going to switch all the leads just to see if they notice. That’s on tomorrow’s agenda.

The RT came along with her high dose of Xopenex that makes my heart race. I was prepared for her. I had my low dose in my pocket ready for the switch. I excused myself to wash my hands, placed her dose in my pocket and then pulled out the low dose. That’s how the magic works, my friends. No conflict or arguments about it with the RT or doc, just smiles and fun. Suckers.  You didn’t even know there was a magic show going on, did you, people? 

The guy in the room next to mine must still ride a horse and buggy to work and write with a quill and ink. He kept yelling “Nurse, Nurse, Nurse.” I’m thinking, did they not show you the big red button on the remote for calling the nurse?  The same remote that you’re using to change the channels of the blaring TV in your room? He must of screamed it a dozen times. This is why some people get a pillow placed over their face Godfather-style in the middle of the night. Holy cow.  Somebody tell that guy what century he’s living in.

Many thanks to everyone for the kind thoughts and messages. They make a difference. When I wrote that CF drove me crazy, I wasn’t making it up was I?  You won’t see the CF Foundation posting any videos of me on their web site. No, I’m the poster child of what you don’t want to do when you have CF. Someone has to set the bar low. Happy to do the job.

Stay well.

The real truth from Fox.

There’s one part of the adventure Unknown left out. When they brought him to the Heart wing, his heart almost fell out of his pants. The most smoking hot of hot nurses got assigned to him. His worst fear. We’re talking stripper hot with long brown hair and green eyes. A nine out of ten, like looking at the sun.

Unknown’s a gentleman and averted his eyes. Not me. I’m a fox. I looked and my eyes burned. But it was worth the blindness.

I prompted Unknown to suggest they bring a pole into his room to see her moves, or just drop a couple dollar bills on the floor to see what might unfold. No luck. This Unknown is the wuss of all wusses. I’m stuck here because his little hearty heart did go pitter patter a little bit funny. No one hooked old Fox up to a monitor when this nurse walked in, but they should have. I’m still dazed by what I saw.

The other terrible part of this current adventure is that there is no beer to be found.  None, not a drop. A little AC/DC playing, some beer and tonight’s post would have had a much different tone. Unknown would have titled it “A letter to my wife: I’m so sorry for what I did in the hospital.” 

This is when I need to be hanging with Tiger, not Chicken Boy.

Someone send a six-pack, a boom box, and a stack of dollar bills. This party needs a jump start.

Fox out.

Another bad day

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14

It’s hard fighting cystic fibrosis. It’s harder making mistakes of your own doing fighting cystic fibrosis.

I should have stayed at the ER and hospital on Friday. I felt better, really well, on Saturday. Then late Saturday night I had a few mild chest and shoulder pains and the entire cycle started again and has continued into Sunday.

I’ve been beating the living crap out of myself for leaving the ER.  Once again, I found a way to make life harder and more painful for myself. I always think I can’t find a way to do it again, but I continue to astonish myself with my boneheaded decisions and stupidity.

I hated the doctor. He didn’t give me enough information to go on or call my doctor. The longer I stayed at the ER, six hours, the more wound up I got. I thought of staying overnight at that hospital, which is isn’t up on cystic fibrosis infection control, sharing a room with someone unfamiliar with a 90-minute coughing session to clear my lungs.  I couldn’t do it and wasn’t thinking straight.

I realize now that part of my panic disorder forces me to flee the situation I’m in. I fled.

I’ve been in full panic mode all day, sucking down Xanax, with a light dull pain in my chest – just enough to make me aware it’s there. I call it discomfort.

So, I now I debate what to do. Had I just stayed, this would have all been resolved by now. I knew it, but I got overcome with frustration and panic and had to flee the ER. Now who knows, maybe I’ve caused more damage to my heart and I have to wait longer to find out that potential bad news, which is only made worse by the fact I made it worse.

The strange part is the overwhelming feeling to end it all. The mental agony crushes me. The decision making and trying not to make the wrong decision is agonizing. It makes me want to die. Yet, my frustration also comes from the fear of not living – quite a paradox. Even the decision to live or die confuses me.

So, here I write this, tonight, completely spent, wanting to give up, yet also wanting to find a way to fix things. I have my evening treatments coming up. My current decision is whether to go to the ER tonight after I’m done with them or stay home and go to the doctor in the morning. I’m not sure what I’m going to do.

Argh.