It’s alive! IT’S ALIVE! (In Dr. Frankenstein voice)

Bleeding from my lungs is a living creature or entity. I’m not sure what to call it. I just know it’s alive and looks for opportunities to take me down and make me pay for everything bad I’ve done in my life. It’s karma living inside of me waiting for payback. And payback is a real ball buster.

We went to Disneyland yesterday. I didn’t quite feel 100%. Something was off both mentally – the panic attacks of earlier this week – and physically – a possible virus. So, the Disney adventure started with me battling myself and trying to avoid a full-on anxiety attack in the Magic Kingdom, with one of my primary concerns being bleeding from exertion. Luckily, the blood didn’t happen until I walked in the house last night. Lucky me, as I’d have hated it if it had happened in public on a ride.

The blood isn’t filling the sink, as it has in the last five months, but it’s hard to tell which direction it will go. I started cipro right away. No more waiting a day to see if the doctor approves it – I awarded myself an honorary doctorate in medicine and green-lighted the antibiotic. Go for it.

Today, the blood seems to be retreating slowly. I have a father/daughter dance tonight and my daughter’s birthday party is tomorrow. So, I’m hoping I can hold out and the cipro will work this time. Here’s crossing my fingers I don’t cough up blood during a dance tonight,  which would be like a scene out of a Stephen King movie.

These are the days when I cannot express my sincere hated of cystic fibrosis with words. I lack the ability to describe the depth of my anger. And if any healthy dad comes up to me tonight crying about his life, I’ll probably have to punch him in the nose and ask him what his life would be like if he had to worry about bleeding all the time. Give someone like that CF for six months and then lets see how much they complain about what they have or don’t have in life. They’ll feel like they won a 100 million-dollar jackpot the day their six month sentence is up.

To be continued, as always.

Does this car come standard with panic attacks?

OCD, CF and buying a used car don’t mix. However, after over two months of shopping for a used wagon, my search is over. Drum roll, please.

And the winning wagon is . . . the Volvo V70 R in Electric Silver.

It's mine, all mine. A new used car.

Yes, I am done spending my nights looking for cars on Craigslist, Autotrader and Thank god it’s over for now. No more going to car dealerships and dealing with salespeople who don’t say anything at all, don’t know the product they sell, or lament about the life they used to live before selling cars. No more sitting in wagons ruined by smokers, making me wonder if they destroyed the lungs of their children at the same time.

Cool thing about the Volvo I bought: No smoky smell and no ashtray (nice touch, Volvo).

I had the Volvo inspected by a third-party to make sure it was mechanically sound and the accident was minor, as claimed by the dealership and previous owner. Everything checked out with flying colors. The Volvo mechanics said it was one of the cleanest used Volvos they’d seen.

I didn’t get a great deal. I was tired of looking and the R is a rare version of the V70 with only 27 of them listed for sale in the USA. But it was the wagon I wanted and a standard V70 wouldn’t cut it after driving the V70 R.

Here’s the fun part: 300 horsepower, 295 lb-ft of torque and zero to 60 in 6 to 6.5 seconds depending on the information source. Yep, this wagon goes fast, especially when the high-performance turbo kicks in. The suspension is stiff and has three modes: comfort, teeth shattering, kidney bruising.

When I got it home the other night I had a mild panic attack worrying about whether or not I had bought a reliable car for my wife and daughter, if I should have negotiated a better deal, and over the money I’d spent – my wife and I don’t like to spend money (thanks, CF).

I didn’t sleep well and woke up to a major panic attack with my heart racing and missing beats. I thought I was going to have to go to the ER because I was worried I was having a heart attack. A full dose of xanax took awhile to kick in and save me from that hell, but I can’t get it out my head that maybe I did have a heart attack and now I’m damaging my heart. See how screwed up I am.

I’m feeling better about the purchase and really dig the wagon. Beats the 13-year-old SUV I’ve been driving. It’s nice to have working headlights that show the road ahead and AC that works – features I haven’t had for awhile. Ah, the little things in life.

Stay healthy.

Life Stew with Onions

If you read my previous post on the LA Times signing me up for free daily papers without my permission, then you’ll appreciate this nugget. Despite my recent 20-minute excursion into futility trying to cancel the paper, and the rep saying she would cancel it, the free paper continues to show up on my driveway each day. I can hear the rep laughing to the other reps when she got off the phone: “Screw him. It’s free. Cancel THIS, asshole customer who refuses our generosity. You’ll get our paper and enjoy it.”

I f**king hate the LA Times now. Each day I kick the paper as hard as I can to the trash can and curse their subscription department. It sits there with the other free papers until I throw them away en masse. I look forward to the demise of paper newspapers. Long live online news.


My wife and I were talking about craigslist and the buying binge I’m on now to the improve the house. If it were up to her, we’d still have the teal carpet the house came with when we purchased it. Thanks to my creative visual genius and my ability to look in magazines with room designs and duplicate them, poorly, I’ve upgraded our house. But do I get the credit I deserve? No, of course not. I’m an unappreciated furniture picker and room designer.

All of this type of talk drives my wife nuts, which is what living with me is like. So, I asked her if she’d like to go back in time to the night we met and change her plans, not show up at the disco, forever altering her life for the better. Based on the gleam in her eyes, she looked like she’d say “yes,” but I pulled the daughter card before she could answer. She wouldn’t want to change that part of her life. I am always saved by our daughter. Without her, my wife would have built a time machine by now.


The universe is conspiring against me when it comes to getting a used car. The Volvo dealer called me yesterday to tell me they had a pre-owned V70 R wagon, which is Volvo’s performance wagon with over 300 horsepower. A family rocket to the moon or grocery store, whichever one comes first. Nice, I’m interested, I said.

Today, I test drove it and it was wonderful. I was so happy. Finally, my two-month search over. I made an offer. Here we go, it’s negotiation time. But when the sales rep left to tell the manager, I looked at the CARFAX: “Accident/Damage reported.”

In the movie of my life, that’s me looking at the sky yelling “nooooooooooooooooooooooo” to the heavens. Oh, how you torment me, god of used cars, teasing me, making me believe I’d found the Holy Grail of Volvo wagons. Tell me this isn’t happening.

It was too good to be true. I was so close.

Now I have to decide if I want to pick up the wagon tomorrow and bring it to a third-party for an inspection to see if the impact repair was extensive or not. Or, I can give up on it. It’s a rare wagon, so it’s not an easy decision. Decision? No, not one of those again. I hate them. Argh.

Anyone want to start a pool on when I’ll buy a used car? 2012 is a good bet.

Stay healthy.

Another winning day, another dog

I’m a lifelong football fan – lifelong Denver Broncos fan. So, Super Bowl Sunday is a holiday in my house. When I tell my daughter that it’s my favorite day of the year, she gets upset, telling me I should choose her birthday. “That day is also in my top five,” I say, which makes her crazy.

I buy this calendar every year because I am afraid that if I don't bad things will happen

I mention the Super Bowl because days like this make me feel like a winner. I didn’t bet on the Packers. However, I did get to watch the game at home with my wife, daughter, and closest friend, who has watched the last 16 Super Bowls with me. That is a winning day, my friends, because I didn’t cough up blood and I wasn’t in the hospital.

I also got to watch another Super Bowl. Though that may seem like a given for some, I can’t be sure that I’ll be around to watch next year’s – I’m not taking anything for granted. Milestones matter.

My daughter turns 9 soon, and I’ll cherish the fact that I’m here to see her ninth birthday, though I don’t want to jinx myself. There is always the chance I’ll have to celebrate the actual day while I’m in the hospital.

Here’s how superstitious and strange I am. I have a 365 Dogs calendar. Each day, I rip one page off of it (except weekends with two days on one page). I do not tear a page off until the actual day arrives. I am afraid to remove the page the night before lest it causes me not to live through the night to see the day – punishment for my overconfidence of looking ahead.

Yes, it’s not easy being me.

Even now I worry about waking up healthy tomorrow, as every time I blog about a good day, I get punished by CF. If I’m lucky, CF will skip this post and I’ll escape its curse of sharing good days. We’ll see. I have a bag packed just in case.

Stay healthy.

Letter To My Daughter – 02/04/11

Dearest Munchkin,

One year ago today I started writing this blog – for you, I thought. But I’m not sure now. I’m just not sure at all.

I hope you read this post one day, and other posts, or some of them, the ones your mom allows you to read. I’ve pushed the limits a few times and have had second thoughts about some of the things I’ve written. It is what it is. I’ve done my best to be frank and present the truth as I see it. Though, as I hope you know, truth does not equal fact. (T≠F). There are a few sentences/posts I should probably take back, though Fox would disagree. [Fox here, I ain’t taking back anything, yellow Labrador. There are no do-overs.]

I’m not sure how interested you’ll be in what’s here. I haven’t spoken to my father in 30 years and don’t regret it, and I don’t really have much to say to my mother. So, I’m not the best judge of what would be interesting to read when it comes to parents. I don’t think I could get past the first paragraph of anything they wrote. So, no guilt if you’d rather be playing your guitar or enjoying life. My gut tells me your mother will be more interested and surprised, as she didn’t know I wrote this blog, or at least to this point. She’s also been more aware of the events I’ve written about, especially the hospital stays.

If there’s anything interesting to read, I say it’s the comments. And though I’ve written close to 200 posts in the last 365 days, nothing I’ve said is as interesting or as touching as the comments I’ve received. Perhaps, that’s the true and best story of this blog – the people behind those comments and their lives and the fact that during 2010 and 2011 I was lucky enough to connect with them through this blog. And somehow despite this awful disease, something special and hopeful can rise from the darkness of living with cystic fibrosis. It feels good to get something back from a disease with the sole purpose to destroy you piece by piece.

And if I look at blogging as a whole, I’d say it feels like white-water rafting, which I’ve done a couple of times. It’s thrilling, scary, tiring, and when I’ve wanted off the raft, my friends have motivated me to hunker down and keep rowing. Sometimes the raft just rows itself and sometimes it takes great effort. But always, it’s rewarding to know you got someplace, flexed your creativity, experienced something new and unexpected, and pushed yourself beyond your comfort zone.

I hope when and if you read this, you are happy – or working your way to becoming happy. I hope you’re not caught up in the material things in life and you understand cash is king and freedom. I hope you’re doing what you want to do and haven’t become chained down with things that don’t matter.

I hope you love your mother and are making sure she is happy and you’re saying things to her filled with love and happiness. Your mother is special and unique and has only love and kindness in her. I’ve never met anyone like her who was so pure of thought, though the world and a corporate job have done their best to try to change that. But they haven’t. I hope you don’t either with the parts of you that are more me than her.

Lastly, I hope your dreams come true. Be patient and work hard. They will. I hope you take risks when it comes to doing what you are most passionate about in life. I didn’t and have regretted it every day. I was so afraid of failure, which caused failure, or didn’t allow me to achieve the success I had hoped for. It’s my wish that you’ll have more courage.

Remember: I love you; your mother loves you; everything is temporary. It’s that simple. Sometimes.

Hugs and kisses,