The Dog Couch

My daughter tells her friends I sleep on the couch. A couple of parents have overheard her. “Oh, she’s so funny,” they say. “Is your wife mad at you? Did you misbehave again?”

Yes, I misbehaved, ha, ha, ha, ha. I’m being punished.

But not by my wife. I have my buddy CF to thank for my exile.

Cystic fibrosis has given me the amazing superpower to sleep anywhere, except flat on a bed. Give me $5 Walmart pillow and a couch, chair, tub, wheel well of an old pick-up truck, or dumpster full of McGriddle wrappers and I’m good to go.

It’s been over 9 years since I’ve slept prone, even in a hospital. The wonderful tag team of GERD and hemoptysis has forced me to sleep upright on a couch. And that’s what I do, sleep on a couch. But not just any couch.

I sleep on the dog couch.

And a dog sleeps with me. As well as three princesses who keep me warm at night. It’s magical.

I place an old ottoman next to the couch for my legs because the pup sleeps at one end and takes up my foot space.

If I weren’t so cheap, I’d buy another couch. However, this couch has sentimental value. It’s the one my daughter puked on five or six times when she had the stomach flu. Oh, the memories. The special smell. The stains. The trip to the weekend Pediatric ER for a fluids I.V.

How could I ever get rid of it?

I love this couch. And this couch loves me.

Ladies, sorry to keep you waiting. I'm here. Sleeping with me may commence this minute.

Here's my sleeping buddy taking an afternoon siesta. (Does she look familiar, L?)

CF Bones and Benihana Redux

It’s all in the bones

“You look skinnier,” one of my co-workers said. I had just arrived at the office and “POW,” in my face. Cream pie, yum. It amazes me when someone comments on how I look when they greet me. I don’t understand it and never will. “Yo, Unknown. Hey, is that a new mole on your neck? I hadn’t noticed it before. It’s gotta be a centimeter in diameter. Wow, look at the curly hair coming out of your left ear. Oh my. And look at that nasty looking suit. Is that lice?”

I’ve heard comments about my weight my entire life. They used to throw me into a tailspin and send me to the vitamin store for a jumbo can of weight gain powder. Now they don’t bother me as much because my skin is elephant-thick. And my scale screams when I step on it these days. But sometimes people say “thinner” because of my CF bones and the look CF etches on my face. What my co-worker probably meant to say is “you look sick in the face,” which makes me think a bag over my head at work would be a good idea. But later that night, when another coworker told me I was looking well, I got confused. Does anyone else get this many comments about their looks? Supermodels need not answer.

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Don’t pick up the phone when he calls

Why does every local work dinner I go to culminate in a trip to Benihana? What is the allure of the place? Instead of my thoughts on it tonight, let’s hear what Stacey of Confessions of a Cyster thinks of Benihana. She gave me specific instructions to give her credit (in a funny, charming way like only Stacey can do).

You have to constantly act impressed with the stupid knife-slinging show…then ohh and ahh at the onion volcano.  Seriously, how many onion volcanos do you really have to see in one lifetime.  All this while trying to avoid being in the path the one time they slip up.  Oops, everybody makes mistakes, right?

Exactly, Stacey. You’re right on. Nothing spoils a good night out like a hibachi knife to the chest.

I once posted this photo for CG. It's good luck. So, perhaps the screaming chef shouldn't knock it over. I don't want "Brady Bunch finds lost Tiki statue in Hawaii" bad luck. Sorry, Lucky Kitty. Please don't curse or hurt me.

The food was good, but the applause for tossing a few shrimp tails into a hat was non-existent. Suggestion for improvement to the Chef: toss a few flaming shrimp tails in your paper hat, let it catch fire, and run screaming from the restaurant, knocking over the lucky kitty and aquarium as you go. That will earn you the standing O you used to receive in the 1970s when your table was filled with onion-volcano virgins.

I did, however, think Benihana would benefit from Stacey’s constructive feedback. So, I emailed her blog site and home phone number to the Head Chef at Benihana. (Stacey, he wrote back and said he’d like to make you dinner one night. You’re welcome. Enjoy. Your pal, UC.)

Stay happy and wear a Kevlar vest when eating out.


Sunday Stories: Anger or CF? and Welcome to Liceland

Anger or CF? Which came first?

When the SUV stopped hard in the middle of the crosswalk, we and the crowd of families with soccer kids had the “walk” symbol. The hurrying driver realized he’d stopped too deep, a common mistake easily forgiven at that point. But then he looked over at us and decided to compound his mistake and step on the gas and make the right turn. My fuse burned fast. And I added to his mistake by yelling out “Jerk Off” in front of everyone and, I hoped, loud enough for him to hear. My wife looked at me in the way only wives can do, and I apologized to everyone. I meant to say “asshole.” But I caught myself, just not in time to keep quiet. I redirected the impulse and fired off another nicer term for the young impressionable minds, each of whom, thanks to me, asked their parents tonight: What’s a Jerk-Off, Pa? Well, son, that’s someone who yells “Jerk-Off” in public. I don’t understand, Pa? Well, son, let me make it simple. It’s the same as an asshole. Exactly.

In a perfect world, without CF, my wish would have been for the SUV driver to stop, get out, and for me to deliver a beating to ensure he wouldn’t run a crosswalk again with kids present. It makes me wonder if I were “cystic fibrosis free,” would I be blogging from jail right now? Is my anger created by the trials of cystic fibrosis, or not? I believe I would not have the degree of pent-up anger without the life CF gave me, or has taken from me, depending on one’s point of view.

Welcome to Liceland. Now go home.

If my wife owned a flamethrower, our house would be a pile of ashes right now. She would let rip with the weapon and scream, “Burn in Hell, lice, Burn in Hell,” until there was nothing left. My daughter and I would stand watching, silent, fearful we might draw her attention and earn a good singeing of our hair as a precaution.

This weekend has been difficult on my wife, who has the strength and courage of a frontierswoman. But even lice can break the strong. She’s cried several times from being overwhelmed. She is due. Her chromosome-challenged husband has mild hemoptysis and may be hospital bound. And, our house, garage and a car are filled with quarantined black plastic bags of anything non-washable. “Can you fit in one of these bags,” she asked me. I kid that she did, maybe. Yes, I kid. Stop it, Fox.

The bug bags will be here for the next two weeks (she wants four weeks) while the eggs, if there are eggs,  hatch and die. My fear is that my wife will have done all of this work to eradicate the lice, then my daughter will go back to school Monday and be infected again.

We emailed the school Friday. They’ll do an inspection Monday. What’s interesting is how many families don’t tell the school when their kid gets lice. We discovered this over the weekend: “Oh, yeah, so and so had lice, and so did they and them. Oh, and them, too.” Yet, we don’t remember the school mentioning them or they. Oh, well, what can you do?

So, we continue to vacation in Liceland and abide by the strict laws of the country. We strip down to our birthday suits before entering the house, then receive a chemical shower, a body-cavity scan from TSA workers, and fresh white space suits. In my Darth Vader voice: “Lice, I am your father.”

We’ll kick the lice problem, one day. Or soon we’ll be living at the Holiday Inn for a few weeks until we catch bed bugs and have to move to the moon, which is bug free I hear. But who knows? Perhaps here is a louse living there that burrows into your ear and eats your brain, which, for me, makes the moon the perfect place to live.

BREAKING NEWS: Blogger derails in midnight crash

Mar 10, 7:32 PM EST

By HENRY CHINASKI
Associated Press

LOS ANGELES (AP) – An obscure blogger was injured in a mental derailment in a northern suburb of Los Angeles early this morning. The incident happened at approximately 12:30 a.m. Many details are still unconfirmed at this time. However, KCBS reported on its 9:00 a.m. news broadcast that the blogger was high on M&Ms while blogging late into the evening.

In confirmed witness reports from LAPD, the blogger experienced unusual pains like those of indigestion or heart-related troubles. He also felt anxiety over an upcoming trip to the state of New Jersey and a general sense of worthlessness. Mild hemoptysis is also suspected in adding to the feeling of dread experienced by the blogger.

The mental breakdown comes after weeks of staying up late writing blog posts while running on fumes and anxiety.

Rumors also persist there was constant pain in his back, which may have led to the heightened anxiety throughout the day and leading up to the episode in question.

Two witnesses, a large furry mutt and a lazy yellow Labrador, were on the scene and witnessed some of the events.

“I thought it was odd when he pushed my hindquarters off the couch. But then left within . . . what’s Time again? Well, he walked away soon after whenever,” said the yellow lab, clearly shaken by the behavior of the blogger. “I’m still upset. He does that to me every night. I have the spot. It’s mine. He just takes it like he owns it. Sometimes he grabs me by the collar. I feel bullied. It’s awful. But I still love him. I can’t explain it. He has it. Do I earn a treat for this interview?”

Family members who slept through the nightmarish agony and drama had no comment at this time. However, the furry mutt did provide additional details. “I saw him with his head in his hands for a long time. I was worried. Then he ate something small and round and drank some water,” added the mutt. “Later he went back to his couch and fell asleep. But he didn’t look so good this morning. Maybe it was bad kibble? It can happen. Eat some grass, that’s what I tried to tell him. He never listens.”

Though the blogger himself had no comment when the AP contacted him by phone, it was reported by KABC that he fell asleep at his desk several times today and felt lousy.

Unconfirmed reports indicate he stood on his front lawn at approximately noon today waiting for a meteor to fall on his head and crush him. However, AP sources have yet to confirm whether his wish was granted. No meteor sightings were reported in Los Angeles today.

According to both dogs, he ingested at least 200 M&Ms of various colors this afternoon in an effort to recapture his work “mojo.” A source who asked not to be identified confirmed the plan failed.

AP will continue to monitor the situation and bring you live updates should events warrant.

©2001 The Associated Parody. All right reserved. This material may not be published, broadcast, rewritten or redistributed. Learn more about our Privacy Policy and Terms of Use.

Raindrops on Roses, Crushes and Bromances

Today started off in a dark place and improved until I coughed up blood streaks tonight. Add that to the back pain I’ve had for the past four days and I feel like I’m playing the game where you place your forehead on a baseball bat, spin around it, and then run to first base. How did I end up in the stadium parking lot?

Photo by Angela Sevin, Creative Commons

This is my mind on CF

My “monkey mind” is lighting up like a fireworks factory fire. Will I be in the hospital tomorrow for the bleeding? What if my kidneys are damaged? I can’t get comfortable. Am I peeing too much or too little? I can’t concentrate on work. WebMD says I have a rare form of kidney Ebola.

I gave urine and blood at Quest Diagnostics (QD) yesterday. I fucking hate Quest Diagnostics.

First, the waiting room is full of sick people who want to kill me (always bring your own pen to sign in with or you will catch Ebola).

Second, the QD workers always ask me: “Why the mask?” Because I have a highly contagious disease that made my ass expand to the size of a beach ball. They used a 14-inch railroad spike to pop it. Hurt like hell. Oh, and what a mess. However, I will take this mask off if you kiss me while I pee in this cup?

Third, QD bills are the gift that keeps on giving for months to come. Thanks to them I had a collection agency harassing me over a $120 invoice I’d never received. QD representative on the phone: Oops, we’re so sorry. Computer error. We’ll tell the agency to remove the medieval catapult parked in front of your house.

I’m in the outfield again. Oh, yeah, Crushes and Bromances.

I was thinking tonight about a few of my blogging and Twitter friends and how much I dig them. I admit the following: I have crushes on my female readers. And a bromance or two – don’t want the guys to feel left out. But, dudes, eat your hearts out – I have some highly intelligent women reading and commenting. How did that happen? Clearly, the bag on my head makes me better looking, as I was told it would in high school – yes, the bullies were right. Thanks guys, I thought you were just screwing with me.

So when does the “Women of CF: Mensa Edition” calendar hit stores? I am so ready to buy it. Sign me up. And I want each month autographed: To Unknown, [(I +U ) 2011] x CH3CH2OH + HLT = CF-3 ft x ∞

Strange, I never anticipated blogging would have this benefit. I do confess it’s hard to be on my best behavior in comments and email.  Sometimes, I’m biting my knuckles with Fox telling me: “Write it. Write it. She’ll take it as a compliment. Oh, you wimp.” Rule #2 in the Book of the Unknown: Never listen to Fox.

Courage is hard to find some days

I want to be the fearless guy – the one who can do anything and not care what anyone thinks, or look like it. John Belushi comes to mind. Charles Bukowski.  Bob Flanagan. Any stand-up comedian. I may have come close years ago in my bungy-jumping stage. If it was risky, I was willing to try it, or say it. Wrap a rubber band to my feet and let me jump. And I did.

He didn't have a fear bone in his body, but he did have a lot of drugs.

But it’s amazing how I’ve gone to the opposite extreme as I’ve aged. When I was younger, I didn’t care what happened to me. Now I have panic attacks because I’m afraid of dying in my sleep or on a plane. All it takes to set an attack in motion is a tweak in my chest for a fraction of a second. “Game on” in my head. With announcers, too.

And then there is this blog. I want to takes risks, push the envelope, be fearless. But I don’t know if I have the courage to do it, and that makes me disappointed in myself. The fear I’ve developed over the years, combined with OCD, is a roller-coaster of bravery and panic. Up and down, up and down. Like yesterday and today.

I pulled my first published post, the one written in the style of Charles Bukowski. I spent three days on it with my OCD firing like a rocket engine. I even held back in comparison to how far Bukowski pushes his prose. I think I got close to his style and how the world might have looked to him had he had cystic fibrosis. I knew the post pushed boundaries, even for this blog, and added a warning like you might find on property guarded by a crazy farmer with a loaded gun. But I thought the post was true to its subject. Then the “it sounded better in my head” part of fear crept in with: Are you crazy? But I summoned a crumb of courage and clicked “Publish” last night.

Then I panicked. I wrote another post to push the Bukowski post back one notch. Done, in the past. No one will notice it. I felt better. Then I woke up this morning in “spiraling out of control mode” thanks to lower back/kidney pain (another post).

What did I do? Not one comment. Not good. Hmm. Did I go too far? What will people think? I like the people who read my blog. I don’t even know them. But I do. They won’t understand the style and connect it to me. It is connected to me – I wrote it. The post is too far out there. But it’s mellow Bukowski compared to his works. It will be okay. Leave it, you wuss.

So, I removed it. And I’m not sure how I feel now. Disappointed in myself because I pulled it? Perhaps. I take this blog seriously. It’s interesting to put writing out there for others to read and see how it’s interpreted. If there’s a silver lining to this story, it’s that I am pushing boundaries because my posts have made me uncomfortable lately. The question is: do I have the courage to keep pushing?

If there’s there’s a blogging downside, it’s finding your own internal editor to tell you when you pushed too far, what’s gold or crap, and whether to hit “Publish” or “Move to Trash.” I can never tell. Maybe I need to ask: What would Bob Flanagan do?

Follow-up to yesterday’s post

When I started this blog, my goal was to be as frank as possible. To lay it all out, take risks, and leave a record for my family and those who are kind enough to read it. Though it’s challenging to judge for myself how I did, I do think I came close – with an asterisk.

When year two came around, I knew I’d been holding back posts about thoughts that screw me on certain days, and have since I was 16. That’s because it’s hard to blog about cystic fibrosis and not take the whole of the community into mind and the toll the disease has taken on younger and better people than I.  It doesn’t feel right to talk of certain feelings with these special individuals and families in mind, especially when I’m the luckiest of the lucky.

But that doesn’t make certain thoughts go away or not part of my life. Yes, I’m lucky to have so much. I think of that every day, but my mind still plays tricks on me. CF has taken its toll on me over the years – the hospitalizations, the fear, the number of times I have coughed up blood. These events have damaged my brain wiring.

I think about escaping sometimes. Luckily for me, I have not chosen this path, as I don’t like pain, though I have a tolerance for it in the hospital. But I do live with the warped thinking. It would be disingenuous for me not to mention these thoughts occasionally. I’m hoping that by doing so I can reduce their power. That’s my hope. We’ll see. Feel free to skip these posts. I can tell you that the post that follows will usually be happier, or angrier in a fox-like way.

Sometimes, I fall off the Happy Positive-Thoughts Wagon and it takes me a day to get back on. But I do get back on.

Stay sane and patient, please.

When my mind goes south

[Adult language and themes]

I’ve been trying to figure out what happens when I have bad days and feel like ending it. I wrote the camel story the other day because it described that it’s not the single straw but the load that breaks my back. My doctor once described CF as carrying a full bucket each day and it only takes one or two added drops to cause it to overflow. Overflowing is bad. That’s when I end up in the ER because I think I’m having a heart attack.

My thought process can be positive six days of the week and “bam,” day seven arrives and everything goes south in a hurry when a couple curve balls come my way. I realize I’m not thinking straight, but I feel trapped. And only one solution sounds reasonable as an escape. I know I’m screwed up, but I can’t do anything about it.

Here’s a sample from the other day.

Blood streaks. Fuck me. Not good. Where will this lead? Hospital? No. I don’t want to go in again. I can’t go in again. I can’t do it. I can’t take another trip there. I have a ton of work right now and important deadlines to meet. I don’t want to talk to HR again or call my bosses and explain.

I should end it.

I have to fly to New Jersey at the end of March. I haven’t flown in almost a year. When I walk through the airport, I’ll be carrying heavy bags and exerting. Exertion equals blood. I don’t want to cough up blood in the terminal. I don’t want to cough up blood on an airplane again. What hospital will I go to in New Jersey? I can’t spend two weeks there on IVs. What if I need another embolization?

I should put an end to all of this.

An email saying I have to go to Detroit for training later this year. De-fucking-troit. No. Another plane trip. I can’t fly. I don’t know that city or anyone in it. What if I cough up blood there and have to go to the hospital? Two weeks in Detroit. I don’t want to go on that trip. How can I get out of it? How many special favors do I require at work compared to every one else. Fuck CF.

I’m not sure it’s worth going on.

I have a growth near my ass. How funny is that. I won’t mention this on my blog. Too embarrassing. Great. What doctor do I see about this? I’ll start with the skin doctor. Seems like a fatty tissue. Gross. I think it’s been there awhile. It it was cancer, I’d be dead by now wouldn’t I? Have it checked out. I hope it’s not serious, but I’ll ask the nurse to leave the room when the doctor looks at it. I’ll have to put one leg up on the chair. Embarrassing.

I can’t do this anymore.

My wife is going on a business trip for three days. I told her to go, but I wish she wasn’t. I have to take care of our daughter. That’s a lot of work. How will I do it? It’s the week before my deadlines. What if I cough up blood while my wife is gone? How fast can she fly back? Who will my daughter stay with? Probably one of our friends. How many days could I make it coughing up blood and not going in? The hair brushing and homework and all the stuff my wife does. I don’t know if I can do it.

I should just end it now. That’s the best solution. I can’t do all of this. I just can’t do it anymore. I’m embarrassed. It’s just not worth it anymore. I don’t want to fail.

So, that’s how it goes. At the time it happens, it’s serious, a wave that comes over me as the load becomes too heavy to carry. And I can’t break away from the thought process. It is a feeling of being trapped, and I have to escape. Then, later that day, I feel okay. Sometimes it takes a Xanax or two. And it’s ironic because every other day I’m worried about losing my life. This, however, I do know: It’s hard to be this screwed up and know you are.

Free healthcare – in prison

Medical parole: Hospitalized prisoners costing California taxpayers millions – latimes.com.

I got excited when I read the above LA Times article about healthcare in prison. Here I thought that one day I’d have to kill myself when my insurance runs out, but now there’s a possible light at the end of the tunnel – free healthcare in prison.

Of course, I’ll have to commit some kind of crime to get there, and the healthcare in prison doesn’t sound top-notch. However, that seems inconsequential when it comes to staying alive and getting to see my daughter grow up, though it will be on scheduled and supervised visits at the prison. Will I get to keep my iPad? Probably not.

I think I’ll rob a bank. I can pretend to have a gun in my jacket and ask the teller for unmarked bills and no dye packs. See, I’ve watched enough movies to nail it. Then, I’ll just stand outside the bank and wait for the police to arrest me. Life is simple after all. There’s always a silver lining.

Then I think of the honest, hardworking, taxpaying CF individuals and families on GHPP here in California who are barely holding on to it with the state budget cuts. California will provide medical care to people who have committed the most horrific crimes but cut other programs to the bone. Hmm, something about that bothers me – a lot.

Maybe my idea isn’t so hot. I might get tired of having to file my nebulizer mouthpieces into “shanks” or “shivs” – or whatever prisoners call them – to protect myself. Clearly, there’s a downside. Forget I posted this. Thanks.

Next idea?

Having a blog rocks! And so does Josh of Joshland!

If my daughter reads this blog one day, I hope she takes away the lesson that you can only get rewards in life if you take a first step in one direction or another. When I started writing this blog I had no idea it would return the level of support, intelligence, humor and kindness that it has. I’ve been blown away over the past year by the experience, as I thought I would attract two or three people who had read every page on the Internet and were down to mine. Like love, I find it best not to analyze anyone’s reading choice too deeply, lest the magic fade. I’m grateful for my new friends – I’ll leave it at that.

And then there is Josh from Joshland, a kind soul unlike any other who walks the walk of inner strength and positivity; a person who has experienced more than a reasonable amount of heartache in his life with cystic fibrosis and the death of his sister, Angie, from CF. Mere mortals might give up. Not Josh. He colors this world orange with his  crazy pal Moganko* and almost makes me want to believe in the goodness of humanity (almost, which is a future blog post).

So, what does this crazy friend of mine from the land of Vikings go and do? He creates two amazing graphics for me. The banner at the top of the page and the Unknown Graphic below. I opened my email and there they were – gifts for moi. And I like gifts. Yes, I am the luckiest person alive.

My humble thanks to Josh for the thoughtfulness and generosity. The banner will go into rotation immediately and appear randomly, depending on my mental state. Regarding the other graphic, I like admiring my handsome self in it. The resemblance is uncanny. Well done, Friend of Moganko.

Please raise your nebulizers for Josh tonight. Salute.

I rock in my purple shirt. Fox doesn't like the way he looks.

 

*There is some debate whether Moganko created the character Josh or vice versa. It’s a mystery that remains unsolved.