Category Archives: cystic fibrosis

BREAKING NEWS: Blogger derails in midnight crash

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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.

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Raindrops on Roses, Crushes and Bromances

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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

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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?

Tapping the Maple Tree

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Lately, I’ve been tapping my anger like one taps a maple tree. I jab a spike in my right leg and let it drip sap into a bucket. Most of the time I keep the anger inside, contained. But slowly, I’ve been draining it, letting go of my fear of using it.

Does this hurt the tree? Because it hurts my leg.

We went to a restaurant a few weeks ago for lunch. It took forever to find a parking space. And when my daughter is hungry, that feels like forever and a day. The restaurant was half full; it was 2 p.m. The hostess came to take our drink order and they were out of fresh squeezed lemonade, their specialty. On a Saturday?

We ordered water and an ice tea. But the hostess never came back with the drinks. She walked by us a dozen times – we had transformed into customer ghosts. Then the waitress helped everyone except us. So, we got up and left. No one cared.

Not getting service made me feel bad because I take it personally. My wife says I shouldn’t because it has nothing to do with me – it was a poorly run restaurant. But I tell her the world revolves around me. It always has something to do with me. Was there something wrong with me? Look, I know there’s something wrong with me, but does it really show in the 10 minutes I’ve been in your restaurant? Are you clairvoyant? Did you read my mind and not like what you saw? I don’t like it either, but you don’t have ESP. If you did, you would have seen I’m a great tipper. So there, Amazing Kreskin.

Then I remembered rule #1 in the Book of the Unknown: Never leave the house without the paper bag on your head – you’ll only frighten people if you do.

So, I wrote the restaurant. I’ve written many emails to companies expressing my happiness or displeasure. I had never used the “F” word in one before. Never. Time to tap the anger tree. Bang. I showed it to my wife: “Are you really going to send it?” Bang, I pressed “send.” Then I thought, “What did I just do?” and panicked, a little. But something about it felt good, like they deserved it. The staff at the restaurant was incompetent and lethargic. They ruined our lunch and made us feel bad. The crappy restaurant needed a wake-up call, something with punch – an email capturing the emotion of how we felt. I did my best to communicate it. I never heard back.

We ate lunch at Jamba Juice next to the blenders. I offered my daughter 10 bucks to walk into the evil restaurant and throw her Mango-a-go-go on the floor. “Then, run like the wind. We’ll have the car ready.” Simple plan. She declined. At least she laughed and saw the humor in it. That’s my girl.

Broccoli, Wasabi. Wasabi, Broccoli. Cabbage, Wasabi. Wasabi, Cabbage.

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[This is not a medical advice site. But webmd.com is, and where you should go for medical information, please. This is a “guy wearing a bag on his head thinking McGriddles cure everything” site. Can you say “nutty biscuit buns”?  I knew you could. And you liked saying those words, didn’t you?]

I’ve written about my love of broccoli and cabbage and how they’ve benefited my digestion. Gots to have my daily dose of Isothiocyanates or papa turns into a grouchy bathroom bear. But is it the Isothiocyanates or just the benefit of eating more vegetables that helps my gut?

Here’s what I do know: I used to have stomach problems, or the mystery ailment known as Irritable Bowel Syndrome, which is a terrible name and one doctors use for stomach problems they can’t’ figure out. (In a Foghorn Leghorn voice: Yes, sir, yes, sir, that there’s something irritating and in your bowels. That’s right. And it’s a Syndrome. I am, I say, I am gonna call it Irritable Bowel Syndrome. Catchy sounding, ain’t it?)

Then, I started eating broccoli and cabbage and voila, much better and stable. And fewer visits to the stomach doctor. So, I’ve continued to this day. Sometimes,  I’ll eat something different like bad deli meat and things go sideways, but I recover much faster with the power of my gut pals, Mr. Broccoli and Mr. Cabbage, which were the original names of the characters in Reservoir Dogs by Quinton Tarantino, but got changed after the Vegetable Growers of America complained it showed broccoli and cabbage as ruthless killers and no one would want to eat them anymore.

Cough, cough. Bullshit.

Boys, give her some space before she gives you an ass-kicking you'll never forget

And now the boys have a new pal: Ms. Wasabi. Yep, I’ve added her to the mix and she packs a punch like Uma Thurman’s character in Kill Bill. I eat it to the point my eyes water and my nose burns. Occasionally,  I can’t breathe for a second and have to grab the table. Oh, Ms. Wasabi, why do you hurt me so?

Today, I dipped peanut-butter pretzel crackers in it. I’ve also mixed it in tea, which I don’t recommend, as it gets lumpy and doesn’t taste very good and just plain looks bad in the teacup.Think layer of barf.

The strange part is that my breathing seems pretty good this week. Really good. Wasabi? It does have horseradish in it, which is in the Isothiocyanate family. Very interesting. It makes for quite the ITC cocktail with Mr. B and Mr. C. Or, it could be my imagination. And, as many of us know, sometimes that’s all it takes to make a positive difference.

Stay healthy.

[Note: The original title of this post was “Isothiocyanate Threesome.” But after reading Lizi’s excellent post about search engines and key words, I thought it best to change it.]

Follow-up to yesterday’s post

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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

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[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

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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?

Day Tripper to Ventura Harbor

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At the beginning of February, it felt like summer. Now it’s cold and windy and feels like winter. We went to Ventura Harbor yesterday. And even with three layers of clothes on, the cold and wind were brutal.

This harbor was cool, but the area around it had a solid 80s vibe to the decor. Here are some pictures.

It had rained the day before and the last clouds of the storm were still hanging in the mountains.

I thought this was interesting. There were a lot tile works around the harbor.

Like this large round tile dial buried in one of the inner walkways.

There were several metal boats in the harbor. I thought they looked cool.

This photo shows the foam and white caps. It was hard to stand up in the wind. In the distance, there is a small rain cloud. In the next photo, taken 10 minutes later, it’s gone.

I like the color of the water in the photo above.

I’m standing on the beach in this photo. Yesterday’s snow is shown in the distant mountains. The flags to the right show how hard the wind was blowing.

I don’t like clowns. One day, this one is going to escape his box. I don’t want to be hanging around when he does.

Stay warm and healthy.

 

 

A new dog or not?

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It feels like when I’m not eating or sleeping or sitting at the computer with a nebulizer, I’m buying something or thinking about buying something. Truth be told, I do buy stuff when I have a neb in my mouth, which makes sleep and meals the times I don’t? I can’t even guarantee that. Curse you, consumeristic country I live in. My value as a human can only be measured by how much I buy.

I digress.

As you may know, I spent over two months searching for a used car. Now the big decision is getting a new dog. I want one.

We have a lab and a rescued mutt. The grateful mutt is a chow mix and has some serious guard dog, bite your ass and never let it go, in him. I like that. Problem is, he’s around 14-years old and the gas and growl are going out of his tank. He can’t hear anymore, which downgrades his guard dog status to “if you step on me at night, I’ll notice.”

So, I want a dog with some physical clout – the looks and size to make anyone back away. And the ears to hear intruders coming a mile away. Oh, and the internal drive to remove their flesh should they try to harm my family while I’m lounging in a hospital room on the other side of the city getting my daily rub down. Or, if a brick falls from the sky and takes me out for good, I’d like to know my family is in good paws when I’m gone.

I’m thinking German Shepherd.

They're cute when they're 30 pounds

Although I’ve had dogs my entire life and believe myself to be a capable trainer, as is my wife, I’m not sure I have the energy to raise and train one of these powerhouse dogs capable of delivering serious hurt. I’ve had one bad dog bite in my life when I crossed through a neighbor’s yard and couldn’t outrun their dog. Yes, it was a German Shepherd and yes it did bite me in the ass, tearing away the entire backside of my white short-short tennis shorts. I have a healthy respect for these dogs after the embarrassment and hurt the one that chased me down delivered.

Labs are easy. Run them in the morning, give them a few carrots and feed them at night and bingo, bango bongo, they do what you say and love you. A German Shepherd is different. They are finely tuned with instincts to protect. You have to be careful not to send them the wrong signals lest you want to bury your neighbor in your backyard late one night because your new dog Fritzkrieg ripped open his throat when he held up a pair garden shears to wave hello. Oops, bad dog. You can kill a 200-pound man with your teeth, but you can’t handle a shovel? What good are you?

The discussion continues in my house. Any bets on how long it will take to make this decision?