Monthly Archives: March 2011

Guilt, Secrets and Hiding Your Blog

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It’s not easy to hide a blog from your wife.

I’ll be writing a post and there she is at the door. Thank you to the inventor of tabbed browsing. Click, I’m on Yahoo! or craigslist.org. However, after yesterday’s post that included her, I’m feeling guilty about keeping this blog a secret. Yes, it’s for my daughter, but my wife may find it more interesting, at least in the short-term. Or, maybe she won’t.

There’s another reason for my guilt tonight. My wife bottles up a lot of emotion about my health. Today, I was about to suggest she check out blogs written by spouses of those of us with the disease with no name because I’m mad at it tonight. Then, I had a flash forward to her walking into my office and saying “you wouldn’t believe this butthead called the Unknown Cystic.” “Well, Honey, I might.”

Or worse yet, and in a Lucy voice, “Ricky, you got some explaining to do before I smash your blogging hands and rip out your deceiving heart and feed it to the damn German Shepherd you made us get.”

I do feel I made the right decision charging ahead with this blog, alone. That’s my gut feeling. I’m not sure the posts would have been the same, as raw, as frank. (Remember, I didn’t say “as good,” as my wife is an excellent editor.) But up to now, I’ve felt guilt free. Not tonight. Tonight I’m feeling guilty about keeping a secret from the woman who has been through so much with me, and made me someone who can get invited back to a friend’s house after a dinner party.

It will be interesting to see what she thinks when she reads this one day. Hopefully, I won’t be around to get the ass-kicking of a lifetime. But she’ll track me down no matter where I am, eventually. I hope.

[Honey, Love, love, love you. With frosting on top and gummi bears. Remember, forgiveness of crazy people is always the right thing to do.]

Sunday Stories: Anger or CF? and Welcome to Liceland

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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.

Lice, Blood and Walmart – All Three Suck on a Friday Night

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It’s 12:39 in the morning. I’m typing this with lice shampoo in my hair. I was last to go after my wife spent the last eight hours combing lice out of my daughter’s hair and her own. Oh, and cleaning the bedding. I don’t have lice because I sleep on an old green couch (another post), but I’m taking one for the team – just in case I have the invisible kind of these little buggers. Looking at my wife comb them out of my daughter’s head made my head inch.

I spent part of the night at Walmart in the longest line you’d ever want to see when you’re trying to buy four $5 pillows (I need two) and three $5 movies for your mother-in-law who came over to man the washer and dryer. I almost walked out when the woman ahead of me decided she didn’t want 4 of the 47 items she’d purchased and the cashier had to re-ring the entire order – minus the detergent and jumbo box of Butterfingers. She kept the two dozen cans of cat food. I’m thinking she’s the type you see on the news with 200 cats living in her house.

I gutted it out and paid. Give me a medal, please.

Then I coughed up some blood. Not a lot, but enough to rock my world. I wrote the doctor and told him if he didn’t find a way to fix this, I was going to jump off the hospital roof next time. I didn’t say quite that. But I was thinking it. That counts for something.

Hold on. The timer is going off. I need to get the shampoo rinsed out before it melts my head like it’s made of wax, which isn’t far from the truth.

[wait for it, wait for it, wait for it.]

I’m back. That sucked. My wife washed the poison shampoo from my scalp. I’m hoping my hair doesn’t fall out while I sleep. I wouldn’t be surprised if it did. Though I think it’s more likely I’ll wake up to find lice the size of mice playing on my chest. I’ll tell them: “I’ve coughed up scarier bugs. Now run along.”

That’s all.

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.