Category Archives: Fear

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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Day Two in Jail – Torture Tests

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Day 2 in Lock up, Lock down, Lock Sideways – it’s all a matter of perspective

I woke up on the wrong side of my plastic bed this morning. Reality smacked me with where I was and why I’m here. I can serve the “nickel” of the normal CF prison sentence. This stay has rattled my nerves and tested me. Escape plans fill my mind.

I swear I heard Fox partying in the hallway last night. I have never slept in a noisier hospital wing than the one I am in now. Loud talkers on a cell phone can’t match these people for volume. I miss the quiet floor I usually stay on.

Yesterday’s nurse princess transformed into a nasty, bossy four-foot troll who woke me up for blood pressure around dawn.  No sweet kisses on the forehead here to awaken me from my slumber. Just a nasty lady mustache atop grinning wart lips. 

Hospital communication breakdowns are my favorite. I give them a printed list of my meds but somehow they find a way to f**k it up. They cannot process the fact I take two nebs of hypertonic saline in the morning and two in the evening. They write down what they think it should be. READ THE LIST, people. I will be placing a special note on future lists: “Yo, it’s two, I repeat two HTS in the morning and two in the evening. That’s not a typo.”

Then there is the “surprise test of the day.” Today, I wasn’t supposed to eat breakfast, yet breakfast showed up. Luckily, I had treatments to do and didn’t eat it right away. The nurse stopped me in time. What if I had eaten it and couldn’t complete the tests? There’s another day in the hospital and another 10K all because of a three-dollar breakfast being delivered by accident.

It’s getting harder to hide CF from my managers at work. It was easier to do it years ago when I only went in once a year or every 18 months and I could depend on having a new boss every year. Now, it’s tightrope walking and juggling at the same time. It’s getting technically more difficult to hide the truth. I’m not sure how much longer I can do it. I want to work as long as I can, but CF is screwing with that plan.

Tests, tests, and more tests

My insurance company will look for ways to get rid of me after today. These doctors love tests. And they delivered big time with that love today.

First up was what I call the Survivor test. They injected radioactive Thallium into me, then strapped me to a table so I couldn’t move. Three large boxes circled me, taking images of my Labrador heart. It seems strange to say 20 minutes being immobilized feels like a long time, but it does and did. Holy crap. I have new respect for Survivor games where they have to stand on a stick for 6 hours. The tech made it a constant point to tell me not to move. I didn’t and couldn’t thanks to his strap-down job.  

From there I went for the poison dart frog venom test. In this one, they placed me on a table and the same guy who shot me up with radioactive material 30 minutes earlier, dosed me with what must have been poison. All of a sudden it felt like I had just chased Fox out of a downtown L.A. bar and down the block. My chest tightened and I couldn’t breathe. SOB. SOB. SOB. Alert. Alert. Dying here. Shoot the f’ing frog that humped me, damn it.

The techs acted like it was normal to feel like you just ate bad blowfish. FU. Normal this, dudes. The bad guy just poisoned me like James Bond in Casino Royale.  But I don’t have an Aston Martin with a drug kit in it. Why are you standing there? Give me the antidote. I’ll tell you what I did with the “Nurse, Nurse, Nurse” guy from last night. He’s duct taped to a gurney on the top floor of the parking garage. Antidote, please.

It’s no wonder I have a splitting headache tonight. It took me 10 minutes to come down off of that joy ride to heart stretching heaven.

From there, I enjoyed the Fast Pass to my 50-minute echo test.  The three guys working it were cool and Fox had some x-rated guy conversations with them, but it was still painful.

Lunch came after the tests, which was a cheeseburger and fries with three ketchups and no salt. I get the no salt part. I’m in the heart ward. But three ketchups for all of that food? Are you kidding me? Who do I kill?

I got to repeat the Survivor test after lunch. It was just as fun as the first time. Try it yourself sometime. Lie on your bed, with arms at your side, hand clasped over your groin, and don’t move. 20 minutes. Start now.

The rest of the day I worked, barely.  But I did eat more M&Ms in one sitting than I’ve ever eaten in my life. They’re monitoring my heart – WTF. Let it race.

Stay well.

Fox’s day in hell.

I thought it was a dude that woke Unknown for blood pressure. It was the lady stache that fooled me. I’ve woken up next to a few whiskers in my day, but this one was thick, black and greasy. I jumped on top of the TV and waited until she dragged her club foot out the door.

I partied hard last night with the nurses. Loud, lively honey babes charmed by moi. Bambi and Ginger helped me tape up the dude next door who couldn’t master the call button. We laughed our asses off to his duct taped, muffled “nurse” yelps. Press the button next time, dude. Press the button.

The docs punished Unknown for “chest pain” today with more chest pain. Whatever they shot into him is something I want a bottle of. That looked like 10 minutes of rollercoasting while drunk on Gin Ball Twisters fun to me. Gotta get me some of that stuff for tonight’s g-string martini “fiesta of love.”

Party like it’s your last.

Fox out.

Another bad day

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It’s hard fighting cystic fibrosis. It’s harder making mistakes of your own doing fighting cystic fibrosis.

I should have stayed at the ER and hospital on Friday. I felt better, really well, on Saturday. Then late Saturday night I had a few mild chest and shoulder pains and the entire cycle started again and has continued into Sunday.

I’ve been beating the living crap out of myself for leaving the ER.  Once again, I found a way to make life harder and more painful for myself. I always think I can’t find a way to do it again, but I continue to astonish myself with my boneheaded decisions and stupidity.

I hated the doctor. He didn’t give me enough information to go on or call my doctor. The longer I stayed at the ER, six hours, the more wound up I got. I thought of staying overnight at that hospital, which is isn’t up on cystic fibrosis infection control, sharing a room with someone unfamiliar with a 90-minute coughing session to clear my lungs.  I couldn’t do it and wasn’t thinking straight.

I realize now that part of my panic disorder forces me to flee the situation I’m in. I fled.

I’ve been in full panic mode all day, sucking down Xanax, with a light dull pain in my chest – just enough to make me aware it’s there. I call it discomfort.

So, I now I debate what to do. Had I just stayed, this would have all been resolved by now. I knew it, but I got overcome with frustration and panic and had to flee the ER. Now who knows, maybe I’ve caused more damage to my heart and I have to wait longer to find out that potential bad news, which is only made worse by the fact I made it worse.

The strange part is the overwhelming feeling to end it all. The mental agony crushes me. The decision making and trying not to make the wrong decision is agonizing. It makes me want to die. Yet, my frustration also comes from the fear of not living – quite a paradox. Even the decision to live or die confuses me.

So, here I write this, tonight, completely spent, wanting to give up, yet also wanting to find a way to fix things. I have my evening treatments coming up. My current decision is whether to go to the ER tonight after I’m done with them or stay home and go to the doctor in the morning. I’m not sure what I’m going to do.

Argh.

Monday Musings – Tightrope Walking and Cystic Fibrosis

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What would it be like to be a tightrope walker?

Take one of the most famous, Philippe Petit: What’s it like to stand that high in the air, suspended between two buildings, knowing that you are completely alone? Should you lose your balance, no one will be able to help you. You can’t Google a solution or tweet your tweeps. Your cell phone rests out of reach.

Tinkertoy Tightrope Walker by moi & daughter

It’s you and the wire.

And that’s the obvious connection to cystic fibrosis – those moments when it’s you alone on the wire. You’re walking the tightrope with no doctor, no friend, no loved one, no tweet, no phone. It’s you and the disease connected and suspended without a safety net.

It doesn’t matter whether you have CF or you’re the parent of a CF child. At some point, you have a moment when you find yourself out there, above the street, deep in thought about your predicament. What can I do? What do I do?  The decision rests squarely on your shoulders.

But there is a deeper connection of tightrope walking to CF. It’s that moment when you look down and rediscover the true situation you face. You remember that you spend three hours of your day doing treatments and coughing up mucus that makes others jump back in disgust, and you take more drugs in one month than most take in a lifetime. Or, when you arrive at your hospital floor, they welcome you by name.

Some days, it is best not to look down at the street below. You can’t turn back, and looking forward doesn’t help either. The wire is long and platform ahead shrouded in fog. Surprises, wind, and close calls line the way. Your past experiences play back in your head, especially the ones that do not help.

How did I get here? Is this really my life? What do I do?

So, what do you do? Yes, you can take one step forward at a time. We all do that. However, there is another choice.

This is where Petit’s actions on the tightrope over New York City provide a possible course of action – lie down on the wire and look up. That is exactly what he did while suspended above the streets of NYC. He looked up, not down – the opposite of one’s instinct at those heights. And that is the true connection of the tightrope walker to living with CF – sometimes it’s best to live in the moment and not worry about what’s below, behind or in front of us. Block it all out and look up at the sky.

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Not So Deep Thought of the Day – Who Burned the Chicken?

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I mentioned in a recent post that I love the concept of fear.less Magazine.

Scary

I started laughing today because it hit me that I will never make the electronic pages of fear.less. Never because I fear everything. Everything infinity. I win.

In fact, I started making a list of my fears for this post and had to stop because I started getting scared. I reached for my little fear-killer, Xanax, to calm my frayed nerves. Then @cysticgal tweeted me to let me know that I’d once again managed to included women and alcohol in a post. I felt better and strangely proud because, yes, I can write about subjects I know nothing about.

So, today I decided to start my own anti-fear.less magazine called fear.ful Magazine.

For about five minutes I thought it was a good idea. I even started drafting ideas for it, a table of contents and the cover art.

Here’s my idea for the fear.ful cover:

I’m standing on the roof of a two-story hospital, which is scarier than a 10 or 15-story hospital because I might survive the fall. I’m dressed in a burning chicken suit surrounded by door handles, chest tubes, split infinitives and respiratory therapists – a scary face is painted on the paper bag over my chicken head. An angry doctor is ready to push me off the edge. No need to cast an actor for that role, as I can pull a few from my past to give me a bump. A dozen Cirque du Soleil clowns wait below to catch me with a large paper net doused in gasoline.

All of that sounded great until I became afraid fear.ful would be a huge fail.ure. I’d lose my money, get sued by lawyers and end up in an alley nebulizing rat.

So, I popped another fear killer, kicked back and read some Charles Bukowski, avoiding sleep, fearful of the nightmares that would come from writing this post.

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Kicked to the canvas today

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I’m not sure what hit me today, but I got punched hard.

I was feeling well early in the day. I did 30 minutes of light exercise bike during a conference call. Then, I made and ate my lunch. Then everything came crashing down fast. First, I felt like my eyes and were tearing and burning. It felt like an allergic reaction, but I’d taken my Alavert. Felt a little like I couldn’t breathe and was very sleepy and nauseous. My stomach was bloated, too, and I felt like I had to bring air up. Had some trouble swallowing. Then the anxiety kicked in thinking that my lung may have collapsed again, which I haven’t completely ruled out.

Took some xanax, which helped, but 7 hours later I feel like I’ve just reached my knees at best. Still feel like my stomach isn’t right. I have to admit in these moments I feel like giving up. The only thing I did differently today was take my zithromax at lunch instead of dinner. Maybe I had a reaction to that? Could the light lunch have allowed the zithromax to react differently in my stomach? Hard to say. Will call doctor tomorrow if not better.

Apologies for the post tonight. Better one coming tomorrow, I hope.

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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