Category Archives: cystic fibrosis

Shallow thoughts and deep fears

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The birth of my daughter nine years ago made me see the world differently – good and bad. It was a great day. There have been happy moments that have made me feel guilty I’ve experienced them, like the squeal of pure joy my daughter makes over the simplest discovery and surprise.

When she was three or four, I would hide an object, usually a small stuffed animal, under a couch pillow and let her believe she had magic powers. “Say the magic words,” I said. And she would do her best to say words that sounded magical. I would press the object against the pillow, lifting them both, and “presto” it was gone. Then through some strategic tosses with my wife the object would make its way into another room in the house where my daughter would discover it. Magic; magical. To live and experience that moment and the look on her face of amazement and pride makes me the luckiest of men.

But not every story has a magical ending. There is the reality and responsibility of raising a daughter into this world and ensuring she experiences the joy of her own child’s mad happy scream one day. And I try not to be a pessimist when I look at the future that is not my own, but was part of my creation. I see peak oil capacity on the horizon, more people in prison than ever before, whorish government officials abusing their power, depleted fish in our oceans, and population growth this earth’s limited resources cannot support. And I worry. I worry a lot. And I feel helpless. A lot.

Couple these fears with my opinion of how low humanity can sink, including me, and I spend my days holding dark thoughts at bay. I’m not ready to buy a Mayan calendar yet, but I’m worried “something wicked this way comes.” And I feel like I should be doing more to prepare my wife and daughter for the day it shows up, though I hope it never does. I want to be proven wrong, but the math and science don’t look good.

I worry about my wife and daughter when I’m gone. They’re not as street smart as they should be. It’s not in them. They are good. I have seen more than I ever wanted to, or asked to. Been in situations I shouldn’t have been in. Done things in the past I’m not proud off. Sins may be forgiven, but they’re not forgotten.

I have no answers tonight. Just the need to get the thoughts and fears out and fill the open space in my head with solutions and positive thoughts. There is always a solution. Now I just have to think of one. People I love are depending on it.

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

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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.

Facebook makes me want to kill myself

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I was a Facebook holdout until this month. I overcame the privacy issues that worry me and signed up. But I’m not giving up the bag on my head – that’s my security blanket until I can afford plastic surgery. I joined because my friends live on FB and I feel like an outsider not being able to read their FB updates. Now I want to kill myself.

Don’t call 911 yet. I won’t be performing any crazy suicidal acts, like throwing myself from the hospital roof the next time I’m in, though the thought has crossed my mind. FB may make me want to end my days, but that’s different from actually doing it or something crazy like jumping in front of the annoying ice cream truck that drives through my neighborhood on weekdays when kids are in school (what’s up with that anyway?). However, Facebook makes me feel depressed and more of a loser than I already am.

I started by looking up old school friends and girlfriends. Big mistake. The school pals are all more successful than I am – my best friend in high school went to Stanford and Harvard and is president of a company. Ex-girlfriends are living in exclusive parts of cities and married to successful men who are doctors and dentists, or who split atoms with a device they made in their garage from beer cans and Lego. The common theme: you did better without me. I’m not that surprised.

Look, I’m not a complete loser (arguable). I had a delayed start with my life when the period for feeling sorry for myself ended (the end of that period is arguable too based on this blog, but let me feel good about myself for a few minutes). I started college late while my friends were more motivated and driven with better reasons to believe they would live long enough to take advantage of a college eduction. I had what we’ll call a “rough patch” near the end of high school. It lasted awhile. (Is it over? Again, arguable) I would like to have a “do-over” on that time in my life, please.

So, I’ll be quitting Facebook soon. I’ve seen enough. Once I find a way to become more successful, I’ll rejoin. Until then, I can’t take the daily FB searches of successful ex’s. If only I could find one homeless old school mate, or ex-girlfriend unable to get over me, who now fishes for meals in a trash dumpster every day. Once I discover that person, I promise I’ll accept his or her friend request immediately. Life can be just like the old days again – on Facebook.

Use the Force next time an anxiety attack happens

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After two visits, my new heart doctor suggested I should go on Prozac. “Forget you” very much, doctor. At what point did you not notice my extensive list of medications? The one that comes on a scroll and unrolls onto the floor.

Sure, let’s add another med to the list. Genius idea. Especially a drug like Prozac, which can do all kinds of strange things to your head. May I have a prescription for a .44 Magnum handgun, too? Pretty please with mustard and my brains on it?

How did I get here?

My fantastic regular heart doctor is getting up there in years and is a 60-minute drive each way, plus the two-hour visit. So, every time my heart does its samba, giving up four hours of my day is a real drag just to be told I’m alive. So, I spun the doctor wheel of fortune and picked a new one close by. The five-minute drive rocks. But the new doctor ain’t my old one.

During the first visit he was complaining about his older patients and how slow they moved and how long the visits take. During the second visit, he mentioned how the children of dying patients don’t accept the fact their parents are dying and nothing can be done. He wasn’t making a big production of his frustration, but was whining. And, as I’m the king of whining, I can spot when someone else is stealing my stage time.

I was also thinking he has life pretty good. He’s a doctor, married with kids and doesn’t have cystic fibrosis. Right there he’s ahead of the game. No whining allowed, Doc. What the hell are you complaining about? Where’s the genie that gives you CF for a month to teach you what you should already know? You’re living the high life.

Back to the five-minute Prozac diagnosis.

Along with the suggestion for Prozac came a few suggestions that showed he hadn’t listened closely to why I was anxious, and ended with the simple advice “don’t worry so much.” Oh, doctor, it’s that easy? Why didn’t I think of that? I’m so lucky. You cured me with your brilliant wisdom. May I kiss your stethoscope to show my eternal gratitude? I promise to name my next boa constrictor after you. The one I’ll let wrap me up and squeeze me to death while I’m high on Prozac.

Prozac this. I’m insane, not depressed.

[“Cranky tonight, I am,” as Yoda would say – if he were not on Prozac, though we all know he is.]

Through the Looking Plexiglass

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No father/daughter dance for me last night. I do have a virus, perhaps a flu, and combined with the bleeding I didn’t have the energy to go. And thus there was no punching other dads in the nose (sorry, Liz).

When I told my daughter I might have to go back to the hospital, she started crying and didn’t mind not going to the dance. We stayed home and played Kirby on the Wii.

Between her sobs, my daughter said it was hard to explain to her friends about having a dad who goes to the hospital. I had to give her the low down about some kids not having dads at all or having dads who were alcoholics or dads who had other medical challenges. There is no norm. Your life is your life and your challenges are your challenges. I’m sympathetic, but firm that she needs to step up and be brave like the female heroes she’s grown up reading about and watching. At 9, it’s not easy to do.

The blood is almost gone; streaks remain. So, I restarted the hypertonic saline this morning. I feel better and am no longer a Tylenol junkie.

Just a moment

For today’s party we went ice skating, which was strange because the ice rink was freezing cold, but it was almost 80 degrees outside. Like walking into an icebox in the desert – and out again – and in – and out.

I didn’t skate. I’m terrible at it and the exertion would have left a lot of bright red blotches of blood on the ice with kids screaming and skating away – think 50s horror movie “fleeing from the creature.”

Instead, I watched from the other side of the plexiglass, which feels like it explains what CF can be like sometimes – a barrier between me and real life. Sometimes it’s the actual glass of ICU or the hospital door or walls. Or the ice rink plexiglass as I watch my family and think that’s where I’d really like to be.

But there’s something in my way.

It’s all good. No complaints. The view through scratched plexiglass is better than the alternative. I’m sure of that.

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

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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?

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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 cars.com. 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.

Another winning day, another dog

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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

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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,

Daddy