Tag Archives: Internet & CF

What I am thinking at this very moment

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Do you feel lucky, punk?

[adult language]

I just want cystic fibrosis gone, exorcised from my body like an evil spirit, where it would hang in the air and I’d shoot it with the most powerful handgun in the world, the .44 magnum. So says Dirty Harry. And I believe him.

I don’t want to keep looking up medical information when I’m sick, thinking I have a medical degree and can diagnose myself on a web site. Don’t all diseases share most of the same symptoms? How many symptoms can there be?

I have everything – every disease known to man and womankind. The only question is which one is bothering me today. Fuck symptom finder. I have them all damn it.

Why can’t I take a probe like the one you stick in a turkey on Thanksgiving and jab it in my thigh and find out what’s wrong with me? And why do I know that if I gave the probe’s readout or report to two doctors, I would get two completely different diagnoses and they might both be wrong. Where’s the third doctor when you need him? On a golf course somewhere, no doubt, or on his yacht or private jet or on the moon, drinking lunar mohitos. Fuck them all. Scratch that. Fuck the ones who suck. Praise and worship the rest. They’re good people.

That’s what I’m thinking at this very moment.

Those fleeting moments of feeling well

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Today I read a very good post by Mandi at runsickboyrun.com.

http://runsickboyrun.blogspot.com/2010/07/you-feel-like-what.html

She does some nice detective work figuring out what’s it like to not feel well with CF. For me, she touches upon one of the hardest parts of having cystic fibrosis – just generally feeling under the weather a lot. It would be much easier if I felt great for three or four months after a tune-up. Then, bang, I start feeling bad and in I go for a tune-up. Now that I’m older, the stretches between I.V.s test me to a greater degree and are battles to see how long I can stay well and out of the hospital. And not cough up blood – my favorite CF event.

A few weeks ago, my coughing production quadrupled, which is the sign that I’m getting ready for another tune-up. I know the pattern well by now. It’s when I have days I lack energy, have strange chest pains and SOB, and feel like giving up. It’s made worse by the fact I have grind out work most days. But I hate going in the hospital more, though I sometimes think it would be nice to live there.

As I’ve gotten older, CF is complicated by other aging issues. I don’t know about anyone reading this and their experience, but when I don’t feel well the first place I look is CF – it gets blamed right away, villain that it is. However, it hasn’t been the cause of my health problems every time.

It’s a challenge to get my CF doctor, who is excellent at what he does, to look beyond CF. When I’m in the hospital or at clinic and it feels like I have more than an exacerbation, I have a hard time describing why I don’t feel well and the symptoms. This makes it harder for the doctors to comprehend. They think I’m crazy.

I’m embarrassed to say what illnesses I’ve thought I’ve had in the past. However, I have called a few right, one being a wheat intolerance. I thought it was CF causing the madness, but it was because of my diet and wheat. Once I reduced my wheat intake by 90 percent the symptoms started disappearing. I did rub in the fact at clinic that hell froze over and I was correct for once – lucky guess?

I haven’t been feeling well most days for awhile now, as usual, but I can’t blame wheat this time. It’s something else, and I can’t get it off of my mind.

Here’s how my thought process goes most days: Am I taking too much magnesium? Is it the chocolate? Testosterone? Is it my stomach or my heart? They said my heart was okay. Why did I get shoulder pains yesterday and some chest discomfort? What caused the bloating? Why am I getting shortness of breath lately? I’m back on Cayston. Is it not working? My peak flow is good. Pulseox down 1 percent. Is it a panic attack? I don’t feel anxious. How can I describe this to the doctor? Is it time to go to the gun store? Could I be eating something that affects my heart?

And it goes on and on like that for days, weeks, months.

Yes, I am insane.

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The Language of CF – Battle Stations

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I read a fantastic blog essay by Tiffany Christensen, aka Sick Girl Speaks. She discusses the use of the “battle metaphor” with cystic fibrosis and whether it’s time to drop it. I recommend reading her point of view. You can find it by Googling “Sick Girl Speaks blog.”

I hesitate to place the link here because I use the language of battling and fighting all the time. I’ve even personified CF into a hulking form that I drag behind a yacht, or chop into pieces or simply beat up. So, with respect to the author possibly not wanting a link on my site, I give you the information you need to find her excellent post.

I do, however, want to discuss my viewpoint on the language of war and battle with CF. Not to debate Ms. Christensen, as there is no right or wrong here. For me, it’s a “Whatever gets you through the night” situation. “War” and “battle” against my enemy, CF, get me through the night and day better than any other weapon I have.

Over the course of my life, I have compared fighting CF to that of fighting a great war. It has served me quite well and I can say that without it, I would probably not be here now. I would not have had the strength to make it through some close calls or, more importantly, the day-to-day routine of treatments, especially that f’ing flutter, which is a daily battle of its own, my face red, curse words attacking and insulting CF and telling it to leave my lungs.

The battle analogy, or metaphor, depending on your definition, allows me to generate a higher level of anger that manifests itself in added power to blow into that flutter for 30 minutes, or cough harder to get the junk out three times a day, every day. Anger is an important element of battle, too. And, there is science to support it. Weight lifters and some athletes use anger for added strength when lifting; and testing shows anger does generate additional power. Many sports teams, especially football, use the language of war for motivation to win the championship.

Anger and battle go hand in hand for me and if I can direct these at CF and the bacteria in my lungs, all the better. I believe it has made a difference in my ability to fend off this disease. I believe a positive attitude helps, too. And yet, I don’t mind anyone who doesn’t believe this, as it’s all about personal choices. I’m not the guy who is going to beg the jumper to back away from the ledge. That’s their decision to jump, not mine.

Yes, war implies one side loses, but it is CF that is losing right now in my world, not me. I am winning. I am maintaining lung function. But I am lucky, too. My defective genes gave me an advantage many others with this disease have not had. And, many may have “lost their battle to CF,” but I don’t look at them as having lost anything. I look at them as great fighters and heroes who fought an impossible war, but battled anyway. And yes, despite having a positive attitude and fighting, sometimes there is nothing one can do to prevent the inevitable with CF. The question is whether not having a positive attitude and a fighting spirit shortens a lifespan. I can tell you that it would have in my case.

When you’re in a war or battle, you are alert. There is danger. And if you let your guard down, bad things happen. It’s the same with CF. What would happen if I skipped a treatment or two? In this blog, I’ve transferred my anger to the page and felt a renewed energy to fight CF – a renewed confidence that there is hope that this fight will end one day in the death of CF. Some days, it just helps to lob “prose grenades,” whether humorous or sarcastic, at a clearly defined enemy that is causing me so much trouble.

I truly thank Ms. Christensen for her thought-provoking post. She has elevated the level of discourse about this disease. Truly, I believe she is stronger than I, knowing that I probably could not withstand two lung transplants as she has. That is mental and physical toughness of a higher level. I need the talk of the battle to get me through the night. Obviously, she has something else that drives her. And I applaud her for sharing that with us.

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Monday Musings – School, Dreams and a New CF Narrative

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I applaud@cffatboy’s recent college graduation. Three cheers for his hard work and dedication. No one will ever steal that accomplishment from him, except old age when he’s 101.

I watched many movies here

His journey reminded me of when I graduated college at age 32.

I had experienced a difficult time in high school because I lacked guidance, was foolish, and CF had taken its toll on me mentally. I didn’t think I’d need a degree.

Why put the effort forth when you are going to die? CF told me.

Partying and having fun sounded better, though I did those poorly, too.

One day, walking to a movie in Westwood Village – I spent my time in movies escaping – a story on the cover of USA Today jolted me hard. It stated that the CF gene had been discovered and a cure was possible.

Now had this been a movie, zoom to a close-up of my stunned face, sound effects like car brakes screeching and the camera panning around me quickly, 360-degree style, as my world spun out of control.

That simple newspaper story redirected the missile that was my life.

Can't thank USA Today enough

For the first time, I believed there was hope and that my thesis about CF killing me might be flawed. It was a revelation in an “oops, what have I been doing with my life” kind of way. I earned my college degree because of that life-changing moment and started believing in the future.

The role school plays in my narrative and the narrative of having cystic fibrosis is interesting to think about. My mother decided she would help me live to graduate high school. I became determined to graduate college. And my current goal is to live to see my daughter graduate high school.

Great work CFF!

I’m not foolish enough today to think my story is unique. How many of us now living with CF learned at a young age from a doctor that we wouldn’t be here today. That is the old narrative of cystic fibrosis for many now. Thousands of volunteers, parents, CFers, the CF Foundation, and the Internet came together to defy and change it, to elevate the average life span to 37 years.

So, my friends, my question today is: If a new CF narrative exists, what is it? And, drum roll, will it be as wrong as the one the doctors told years ago?

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A New Weapon Arrives – fear.less Magazine

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Two subjects I think about a lot are cystic fibrosis and fear.

You had me at fear.less

I know the exact point CF became a disease of fear for me. That story is sitting in my blog’s “drafts” folder. I haven’t been able to finish it.

Before that tipping point in my life, I faced down this disease with the bold confidence of youth. After that moment was a life fearing what I had to lose.

So, it was with jaw hanging open that I started reading a new online magazine called fear.less. To quote Rene Zellweger in Jerry Maguire, “you had me at ‘Hello,”” which for me was the title.

A magazine about facing fear head on? How many CF warriors and warrior parents can you see in their upcoming pages? I plan on emailing fear.less with a few suggestions.

Here’s the link,  http://fearlessstories.com/.  Tonight, I applaud the fear.less creators for telling the stories of people who have “miles to go before they sleep.” I can’t wait to add their stories to the CF stories I read every day.

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Solitary Confinement, the 60s and Bob Flanagan

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I read an article about the damage solitary confinement does to prisoners. One might say that’s not a bad thing, a little payback for their horrific crimes. I won’t debate that here. What was interesting and relevant to CF was how much humans need the company of other humans. Without it we literally go mad, as evidenced by solitary confinement research.

That’s the closest I can get to describing growing up with CF in the sixties and seventies. I wasn’t isolated from other people, just other people like myself, which is one of many cruel ironies about this disease. Mask up and stay a certain distance away from each other, symbolizing separation even when together.

Thanks to the Internet a younger generation of CF kids can grow up knowing there are others out there like them. And, more importantly, some of us grow old with CF. I felt like a zoo animal at times growing up, different and apart, which was occasionally reinforced by the neighborhood kids through statements such “you’re going to die” or the rocks they threw. Being skinny didn’t help the situation.  (Sorry, crying like a baby here.)

And then there was Bob Flanagan, CFer, performance artist.

I speak of him for three reasons: to keep his warrior memory alive; I respect him; and because I wonder what his life would have been like had he grown up in the age of the Internet. Did he feel the same isolation?

I was lucky to see Bob perform one night in Venice CA at Beyond Baroque in a room painted all black, which was quite disconcerting in itself. Bob’s dark performance fit perfectly in the suffocating space and created a sense of disorientation.

He and I had a mutual acquaintance in a local college professor, a great writer who I still owe an apology to for monopolizing his office hours with my crying about my life with CF. (Sorry, JK.)  He told me about Bob’s show and I took my future wife to see him. (I’m surprised she married me after that night in Venice.)

I won’t go into detail about Bob’s performance because there is plenty of web content about him, including a documentary. And I offer this warning: Most of Bob’s performances are beyond Adult Content. In fact, some of his material might be the type of thing that you wished you’d never seen.  So, you may want to read about Bob. Proceed with caution before entering his tortured world.

How would the Internet have reshaped his life and mine? People are more knowledgeable about CF and understanding these days than they were when I grew up, and Bob 10 years ahead of me. Most realize we have more to catch from them than they from us.

Even today, with my friends, Twitter friends, and family, I still feel a sense of isolation.  Is it from my youth, or is it that I learned very young not to talk about CF, to hide it from people, and rarely discuss it?

My thoughts on this now: We all have challenges in life. Are mine really that different? I don’t know. Maybe.

I do know this: Solitary confinement won’t be punishment enough for cystic fibrosis and its crimes; Judgment Day is coming.