Tag Archives: cystic fibrosis

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.

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

Would You Like a Filter for that Dream, Sir?

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My wife and I visited a new friend this weekend. He has three Harley-Davidson motorcycles in his garage and is quite the collector. The bikes looked pretty inviting standing there ready to go, an adventure waiting to happen.

I know nothing about motorcycles. However, this morning I thought to myself, “I should buy a motorcycle.” I really did. And for about two minutes I believed I could do it. Yes, I thought I could go out and buy a motorcycle and ride it. I pictured myself flying down PCH, speeding past cars and enjoying the ocean air. I was so cool.

Then I remembered I have CF and the dream burst like my lung during an infection. Play the emergency braking and motorcycle crashing against a wall sounds. Dream over.

How did I believe I could maneuver a heavy bike through L.A. traffic, breathing all of those exhaust fumes? I’d be coughing up blood 30 seconds into my first ride. Do you know how difficult it is to ride with the inside of your face mask covered in blood?

These two-minute fantasies are one of my least favorite parts of cystic fibrosis. I have them a lot. Yeah, sure I can fly to Europe on business. (Count to two minutes.) No, I cannot fly to Europe. What was I thinking? I’m a complete idiot. Did I really believe for a minute that I could do that? That it would be smart to take an 11-hour flight? How did I let myself believe it?

It’s almost as if I have the thoughts of a normal healthy person and it takes these thoughts a couple of minutes to reach the “CF filter.” Some thoughts pass through this special strainer just fine – go to McDonalds and buy a McGriddle. Eat the McGriddle. Wish you had one more McGriddle. Other thoughts? Well, they get filtered – ride your Harley to Malibu and meet two Brazilian supermodels who are only interested in a one-afternoon stand.

Oh, yeah, and then there’s the “I have a wife” filter.

Decision making made harder

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Cystic fibrosis has screwed up my ability to make decisions. I was wondering why I’ve taken two months to decide on a used car – haven’t decided yet – when I realized it’s CF’s fault. Obviously, I can blame the disease for many things, which I’ve done on this blog, with coughing up blood being the obvious winner. But “decision making” surprised me when I realized what was behind the agony I feel making important decisions in life. I didn’t always have this problem.

Over the years, I’ve had to agonize over every decision related to CF I’ve ever made. Which doctor to see. Which hospital to go to. Whether I should go on IVs or not. How long to stay on IVs. Whether to call the doctor or not. Take the oral antibiotics or not. And there’s the classic and grizzly bear of all decisions: Should I go to the ER or not?

To have this disease is to live a life of having to make what may be life-altering decisions. Decisions born from CF have more riding on them. They are not the same as picking a paint color or a restaurant for dinner. When you’re looking to gain any edge you can, a wrong decision feels deadly and heart-breaking.

And wrong decisions don’t go away. They hang around in your subconscious until it’s time to make another important decision and you remember the last time you had to make a decision and how you screwed it up in a big way. Bad decisions are like thrown boomerangs you forgot about until they whack you in the back of the head.

I find that this problem has bled over into my normal course-of-life decisions. I analyze everything to the point I can’t decide one way or another. This damn car. What should I buy? How much should I spend? Private party or dealership?

I fear a bad decision more than I fear the reaper, giving the Blue Öyster Cult song new meaning. And I probably need decision-making therapy. If only I could . . .

[No decisions were harmed, or made, in the writing of this post]

Carry the Load, Crybaby

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If I saw a psychiatrist, which I probably should, and he or she asked me what the future looks like, I would answer: It’s heavy. And I’d mean it in the sense that the future weighs a lot, that it has physical mass and I can carry it on my back – like a rock. And with every step I take, the rock gets bigger and heavier, growing from its molten center. At some point, my legs give out and the future crushes me flat, my arms and legs sticking out under its mass like Wile E. Coyote.

So it shouldn’t come as a surprise that when I think of the future, it looks difficult, hard, not appealing, filled with unpleasant events. Who enjoys carrying a giant tumor of a granite on their back? There will be more coughing up blood, more hospitalizations, more of everything CF.

And there will be dying. And there will be crying and emotions by others, though this is debatable and shouldn’t be taken for granted, as I’m not the most lovable of guys. And sadness. And the time my daughter and wife will need to find a way to pull themselves together, which I hope is short (move on, have fun. Enjoy at all the Craigslist furniture I bought you. Live like they do in Coke commercials.)

I confess: I have days when I wish the disease would take me, wipe away not feeling well and the buttery stress. But I’m happy that it hasn’t.

This I do know. The pressure to make sure each minute counts is great, oppressive, and increasing by the day. I can do the math in my head. I’m not going to be here in 50, 40, 30, 20, 10 or who knows how many years. Perhaps days. If I get in another argument with someone with blue hair who sees things that didn’t happen, my end of days may take place in prison.

I am running on fear. My tank is full of it, 91 octane, high-grade. Every day now is a bonus. I look at things more closely, linger on objects and people, the lines in my friends’ faces. We’ve all changed over the years. And I feel like I’ve been through so much, taken my share of beatings from CF and have the scars from each one. And I have more to come. I’ll take them like a man, or a mouse, and see the movie through to the end. I hope the CF Foundation or Sharktank or some drug company finds a way to stomp this disease’s demonic spirit of gut-ripping terror into the earth with the heel of a boot. For the sake of everyone one involved. I hope. And that makes the weight of the rock bearable for one more step. And another. And one more. And.