Saturday Funhouse: Four inventions I need now

[Adult language]

I need four, count them, four inventions to make my life with CF easier and more fun.

Spit away

1. Bug-zapper dentist spittoon. This invention would be a combo device to cough phlegm into that would kill it dead. It’s similar to the cuspidor suction attachment at the dentist’s office with the sno-cone paper cup – the one that makes a suction sound of whoosh, there goes the blood from your gums and blue mouthwash, drool puss.

I need one major modification made to it.

Die PA, die!

I need the suction device attached to a bug zapper with sound effects. When I spit mucus into it, I want that lung deposit to burn in a small inferno like a fly at a fourth of July BBQ hitting the bug zapper. And I want sound effects when the bacteria bite the dust. How about two-dozen different screaming sounds to choose from every time the green goo burns to death. AYYYYEEEEEEEEE, it will scream out in its last second of scum life. BACTERIA BE GONE!

That will teach you to live in my lungs, motherfuckers.

Step right up, partner and down a dose of Xopenex

2. The hanging neb holder. Remember the 70’s craze of hanging plants from the ceiling in macramé holders? You may be too young if you don’t. Trust me, it happened. Well, I am tired of holding my nebs in my mouth like a cigar. I want a neb holder that hangs from the ceiling, which will free up my hands for a beer and stick of Big Ralph’s Glazed Buffalo Jerky. I’ll attach my neb, then mosey on up and start my treatment while it hangs in the air. Look ma, no hands.

A bungy cord design may work best, as I’ll be able to move around without fear of my teeth ripping out should I make a sudden wrong move, such as passing out drunk with indigestion.

Hulk must regulate the situation now!

3. I want to look like the Hulk in my Vest. It’s impossible to look cool wearing the Vest, with its two hose attachments protruding like cow teats. Here’s my idea to fix that. Have you ever seen those swimsuits for kids that have the life preserver built into the suit?  They look like muscles. That’s the look I want for my vest.  I want to be able to walk outside and not look like an astronaut that needs to be hooked up to his oxygen tank before shuttle lift-off.

When my neighbor sees me he’ll say: “Hey, UC, you been lifting the heavy iron lately? You’re looking buff, my man.”

I’ll reply: “That’s right puny neighbor dude. I have been lifting cars. And if you park that shitty van in front of my house again, I’ll regulate your ass and your van from here to the moon.”

Boring. Add flames and you'll have fun and an act.

4. And now the act you’ve all been waiting for. I want a flutter that plays music. I spend enough time blowing into the damn thing that it should give me more than just clear lungs – it should give me a career path in entertainment. I want to be able to play every song in the Rolling Stones catalog on it.

Can you imagine me performing on America’s Got Talent?

“And what will you be playing for us tonight, bag-over-your-head-guy?” the judges will ask.

I’ll play Gimme Shelter on the mysterious instrument no one has ever seen.

HOLY COW, what an amazing device and sound, the audience will think. He’s spent hours perfecting his technique. Look at how red his face gets.

The performance will go great until, you guessed it, the flutter makes me start coughing up my lung pollution. Then audience members will turn away in horror and I’ll get three X’s and the hook. The last words from the clean-up crew will be: “I can’t figure out how to get this crap off the stage. Someone bring me a blow torch.”

At the very least, could someone please invent a Flutter that is exciting to use, perhaps one that shoots flames? Please?

I could use it to perform at Venice Beach on weekends, right next to the guy who juggles chainsaws near the cheapo-sunglass stands.

I’ll be called Mr. Flutter Flames. And I’ll have no eyebrows.

Stay well.

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Dust in the light

Have you ever been sitting in a room and noticed the sun shining in at an unusual angle – an angle that makes you study your surroundings?

Summer light in the late afternoon with its brightness creates this odd effect. Dust particles float in shafts of light. I breathe that every day? you ask yourself. The room takes on a different look and feel. You notice design elements you forgot were there, such as the wood grain of the coffee table, or the texture of a chair’s fabric. You see details you normally don’t see which hide in plain sight the other days of the year.

I have those moments with CF.

When I was a child, I took powdered enzymes in applesauce. Then, at some point, I couldn’t do it anymore. I gagged on the applesauce and the terrible taste of the powder. They gave me solid pills when that happened. At some point I remember switching to Viokase, then Pancrease, and now Creon. Along the way I probably crossed the “300,000 pills taken” checkpoint, perhaps 350,000.

I often forget that most people don’t take pills with food. The other day I wondered if my wife had taken her pills before eating. Only one problem: she doesn’t have to take them because she doesn’t have CF. But for a moment I thought the norm for everyone was taking a handful of enzymes with meals.

Last night I was doing my inhaled treatments, which I do every single day without fail, and it hit me again that this is something most people do not have to do two or three times a day everyday. It’s routine for me. It’s white noise. But this was one of those brief moments when the sun shined in and I saw my situation in a different light. I noticed, became aware of, was reminded of the absurdity of the daily routine needed to stay out of the hospital.

So, I opened up a little box in my mind, placed the thought inside it, and shut the lid. Then I did two hypertonic salines, my Symbicort, my Spiriva, my heart medicine, and my Cayston, and headed to bed. I knew tomorrow I would repeat it. And again the next day. And the day after. And, with hope and luck, for many days after that.

And I thought: some days it’s best to ignore dust in the light.

Frack Off

I worry about the Earth my daughter will inherit and its condition when she does. Our oceans are filling with plastic debris; many of our streams flow with poison in them; the planet is getting warmer; and we’ve almost reached peak oil production. And now, thanks to a new film by Josh Fox, I’ve learned that many underground water supplies and watersheds contain poisonous chemicals from a drilling and chemical process called Hydraulic Fracturing, or fracking.

Have you ever seen someone light tap water on fire? I hadn’t until I watched the film. It’s funny at first until you realize the water is poisoned and can’t be used. Then it’s not so funny. And it’s all in the search of clean energy – clean gas energy. The irony of this search for clean energy is that it depends on polluting techniques to unearth it.

(Would you like to see water catch on fire? Play the video below.)

The gas companies inject various chemicals into the ground to fracture the Earth’s crust and release the gas, where it’s captured by wells on the surface. Unfortunately, the majority of the chemicals they inject are dangerous to humans, not biodegradable, and poison water supplies – and the air above thanks to the venting of the wells.

It’s one of the best documentaries I’ve ever watched – simple, to the point, and revealing. Its sub-themes reminded me again of the power certain companies wield over our elected officials. Somehow our government continues to make decisions that are good for companies and bad for our well-being. This hypocrisy is very clear in the film, and makes me feel hopeless about our government’s ability to protect our interests and health.

Here is the link to the web site. Click on “drilling areas” to see how extensive fracking is in the USA: http://www.gaslandthemovie.com/

Here is the link to the HBO site if you’d like to watch Gaslandhttp://www.hbo.com/documentaries/gasland/index.html

Stay well.

I Want To Be Jack Nicholson

Visit to the optometrist

The eye doctor told me I needed new reading and distance glasses. I thought I’d have to buy two separate pairs, but she told me I could get one pair with “progressive” lenses that covered all distances. Sounded great. Not sure how the magic works, but I love saving money.

Here I am wearing the glasses in question. Finally, no bag over my head, though I'd look better with one on.

To prevent a fashion faux pas, I brought my wife. And after trying on a dozen styles, she helped me choose a pair of tortoise-shell Nike glasses with a green inner frame, which was a hip, youthful touch. They seemed okay, but I didn’t have lenses in them so I couldn’t get a clear image of how I looked. But my wife told me they looked good.

After the frame was picked, the sales guy tried to sell me every 80 dollar add-on I didn’t need. I gave in for the glare protection because that feature might help at night. Even with insurance I got pounded for over 250 dollars.

A week passed and I picked up my glasses. Looking in the mirror with them on, two things happened. First, I realized that I looked like Robert De Niro at the end of Casino when he wore huge old-guy glasses. Second, I couldn’t see clearly because of the progressive lenses, which require you to look out of certain parts of the lens to see close up, medium or far distances. Oh, #!$* me.

The sales guy told me not to worry because it takes a week to get comfortable using them, but not to walk down stairs or drive with them yet. What the? Do I have to visit a mall parking lot like I did at age 15 and learn to drive again in these things? Are you kidding me? How did I go to eyeglass hell and not know it?

I was pretty upset at that point. I looked 80-years-old and couldn’t see well (that is probably how I’ll be at that age if, by some miracle, I outfox CF). Yet, the coup de grâce was still on the way. When I got home, I asked my wife if she thought the glasses looked good on me. She shrugged her shoulders and said something like “I thought they did.” Oh, being married some days. Argh, argh, argh. You thought they did? Past tense? What about now, at this moment?

The real blow to the head came when I tried to use them while doing computer work. Impossible, as they had no sweet spot that allowed me to focus clearly on the computer monitor. I could eek out a “less-blurry” image if I tilted my head sideways at just the right distance, and held one leg in the air, but I wouldn’t be able to maintain that pose for the 10 to 12 hours I spend looking at three monitors.

Give me a new pair and I'll let you live. Maybe.

I hate situations like this where I feel like I got hosed. I wish I were Jack Nicholson with his unlimited funds and volcano temper and I could stand in the middle of the optometrist’s office, with the joker who sold them to me sitting there, and the doctor who told me progressive lens were the way to go looking on, and throw the new eyeglasses to the ground, then jump on them until they became a mass of pulverized Nike plastic.

I’d calmly say: “Now how about selling me a pair of glasses I can see out of and use for work without tilting my head like a curious dog waiting for a treat – a pair that doesn’t make me look like I accidently walked out of the nursing home during a game of bingo and can’t find my walker or my way back?”

Is there anyone here who can do that? Is there anyone here who knows what the *$&# they’re doing?

Of course I’d take a 9-iron to the racks of crappy glasses on the walls, destroying them all. Then I’d drop my credit card on the counter and say, “I didn’t see anything I liked today. Call me when your new inventory arrives.”

Oh, how I wish I could do that. Instead, I have to go back and see how much it’s going to cost me to get new ones. I can’t wait to take it in the shorts – again.

I’m living proof some of us don’t get smarter as we grow older. We just get fuglier.

Stay well.

25 years with Mrs. Unknown

I laughed out loud when I started to write this post. I’m serious; I did, literally. Let me explain.

25 years in the best bankrupt state in the union

This August it will 25 years since I met my wife.

I laughed when I thought of that because I have no idea what she was thinking when she started dating me, let alone marrying me. I was/am/will always be a mental case. I can say with 100 percent certainty that I got the better end of the deal.

Her work ethic inspired me to go back to achieve the goal I couldn’t on my own – getting a college degree. I’ll always be in her debt for that one alone, not to mention the way she’s supported me over the years. I can’t imagine that I would have made it this far without her.

We’ve been married for how many years?  . . . do the math . . . wait for it . . . wait for it . . . thinking . . . thinking some more . . . I use words, not numbers . . . here it comes . . . 18 years. Yeah, 18 years, I think. Close enough. Wow, married that long? It’s a blink. I’ve never in all of these years asked her if she had doubts, or how she put the CF aside, or was she worried or afraid? Or, if I did, I’ve since blocked out the conversations. Best not to question another person’s temporary insanity.

I will share where I asked her to marry me, which is pretty corny, but I was an English major and probably deep in a book with lots of overt symbolism, plus I was young and . . . brighter than I am now. Hey, that doesn’t make sense.

I love Dairy Queen and my wife. I especially love taking my wife to Dairy Queen, when we can find one.

Anyway, I asked mi esposa to marry me at the top of the first hill on a rollercoaster at Magic Mountain. The Viper, I think. Just before the car went down the crazy-steep first drop, I asked. And it took the entire ride of screaming and holding on tight and the coaster returning to the station for her to say “yes.” Amazing that she did say “yes,” which may have just been a response to me asking “great ride, huh?” Again, I don’t question it. I don’t understand it, and I don’t question it.

I wonder what she would do if she had a time machine now, would she still say yes?  I know the answer, as my daughter pretty much means she won’t mess with anything that would affect that timeline. So, I’ve safe. Or, my past is. My future? Hard to say. I don’t take it for granted.

What kind of courage does it take to marry someone with CF? I’d guess a lot. And when that CF someone is self-absorbed and the equivalent of a day at a rainy beach with the wind blowing sand in your face, I’d say extraordinary courage is required.

A writer friend of mine, who has since passed, once told me it’s best not to analyze love. I’ve taken that advice to heart and never examined it with a microscope. Shakespeare pretty much covered the subject for all of eternity anyway.

So, 25 years have passed. I know they’re not all marriage years, but with CF, I’m counting them that way. I have to figure out something nice to get her. I know that 25 years with me has been gift enough, but a trinket might be in order. She doesn’t like to spend money and doesn’t like jewelry. I’m at a loss. Hmm, what could I buy for myself that I’d be able to say is really for her? I’ve done that many times over the years.

How can I repay her for the 25 years? I’ll have to think about it. It’s not an easy question to answer.

To be continued.

Visit to my GI doctor

I went to see my gastro doctor today. I’m so used to going to clinic with a mask and gloves on it felt strange going “naked” to a non-CF doctor with patients in the waiting room not worried about bacteria. I still took precautions by taking my own pen to sign in with, and I used my shirt to open every door. Afterall, it is an office with patients who may have c-diff, which is something I hope I never get again.

The nurse made me wear a paper gown, which could have been 120-grit sandpaper. I should have written “Von’s” on it since it fell like a grocery bag.

When the doctor went to shake my hand, I put my elbow out and told him I might be coming down with a cold. Bad move on my part. Later in the exam, he thought that some of the chest pain might be from the cold. I had to backpedal a bit and tell him I wasn’t sure if I had the cold yet, and we should ignore it as a possible cause. I reminded him I was being cautious because I didn’t want to give it to him and have him give it to his patients WHEN HE SHAKES THEIR HANDS.

Doctors need to drop hand-shaking. Shaking hands comes in second on the list of ways to catch sh** you don’t want, right behind French kissing with open sores in your mouth.

Dr. Gastro wants to do an endoscopy and colonoscopy on me. Argh, argh, argh. Last time he put me under it took forever to regain my lung function. Something about the anesthesia gets to my breathing. More embarrassing last time was when I was just about to go nighty night, I started telling the anesthesiologist how good looking he was. True story. When I woke up he had written his phone number on my stomach.

I’m just kidding about the phone number part, but I wish I was making up the part about going on and on about his good looks. I’m not. It’s embarrassing to think about, but the guy did look like a frigging model.

Regarding the potential procedures, I told the doc that I’d have to speak to my CF doc and get back to him. I’m thinking that the next time I’m on IVs they can do the tests in the hospital. The IVs may help prevent me from losing my air for awhile. We’ll see. Regardless, I don’t want to do those tests, as the potential results scare me.

If only I had a coupe of fistulas on my body. Dr. Gastro could have opened them up and looked inside me, squeezed my intestines and rubbed my colon – all while I sat there and watched.

Oh, cows in Texas with holes in your body, will you ever leave my thoughts?

Stay well.

A Window to My Heart

I woke up this morning sweating with pain in the center of my chest where my Xiphoid process is located, which is one of the coolest names for anything in the body, and a great name for rock band. I wondered: Is it my heart? My esophagus? Stomach? Where are you coming from, Pain? WHEREEEEEEEEEEEEEEE?

So, at 5:30 in the morning I sat there exceeding the maximum dosage for Tums, hoping it might be GERD from last night’s meal. Then I thought about cows.

I thought about cows because of the latest post by Dr. Nanos, which is a name I like a lot because it sounds very superhero or super villain-like, depending on whether Nanos uses her scientific mind for good or evil. Well, the good Dr. posted a picture of a scientific cow with a fistula in its side (these cows have windows, fistulas, in them so the scientists can look at the cow’s insides and open it up to stick their hands in).

Yuck, get out of my head image of the cow with the ship window in it. Too late.

I had a nightmare a few hours earlier, not about cows, but about someone breaking into the house. And usually I only have nightmares when I eat something that doesn’t agree with me. So, I hoped it was heartburn, not my heart. And I wished I had a fistula in my chest that I could use to look inside my body. (How creepy would that be?) However, I would like to see what’s going on in my stomach and be able to stick my hand in there like a box of gooey slime on Halloween.

The combination of anxiety adrenalin and thinking about cow ports killed any chance of going back to sleep. I sat there on the edge of the old couch I sleep on thinking about how I would approach my predicament during the day. Would I call my heart doctor? Or my stomach doctor? Then I noticed the triceps on my left arm looked gigantic and was tender. I must have had a reaction to yesterday’s allergy shot. Oh, just great, damn it. Now I have a trifecta of doctors to call.

At 9:00, I called my allergy doc, who was very nice and told me not to worry, as we’d bump the dose down next week. I made an appointment with my stomach doctor for tomorrow because my stomach bothered me all day. I called my heart doctor to talk to him, as he’s good at calming me down, but he’s out until August. Dr. Xanax filled in for him.

Tonight I’ve decided that I’m tired of having to go to where the medical equipment is. I want it to come to me. So, I’m going to plan a heist worthy of a movie and steal everything I need. This way when I wake up with pain, I can simply run an EKG or stick an endoscope down my throat to see what’s going on. I won’t have to stress about getting in to see a doctor or going to the ER. I’ll have everything I need. Hmm, I’ll probably need a doctor at home to help. I’ll kidnap one of those, too.

BTW, I’ll need a crew to help me break into the ER, which is open 24 hours a day. We’ll need to carry everything out in our clothing. Who wants to help out?  Any ideas how we’ll get the x-ray machine out?  Send in your resume if you’re interested. Do criminals have resumes? Probably not. An email and prison record will work.

Remember, when you read my future post about all of my new home medical equipment, you have no idea where it came from.

Stay silent, fellow perps.