Caught in the medical riptide

I’m back in heaving ocean waters again. A sea full of medical tests and ailments. And it’s going to be awhile before I can escape its grasp and swim to shore.

It started with the blood clot in my neck and the twice-a-day “shots  from hell” to the gut. Now I have two hematomas on my fat-covered six-pack – large bruises with nodules of what I guess is hardening blood in the middle. Kind of like chocolate candies with almond centers, not that I’ll ever eat those again now.

There are a million rocks under that whipped cream

Then last week on a vacation day, the ocean attacked me by throwing a large stone at my foot. A trail of cuts runs up my right foot to a large bruise near my ankle bone.

I was standing in a field of rocks with my daughter searching for cool looking specimens to take home when a foamy wave shot up the beach, rolled a nice big rock and beaned my foot. It hurt, but I was fine until I went bowling Sunday.

That’s right, bowling.

Who’s bright idea was that? Oh, yeah, mine.

So, we went, Sunday, bowling. And on the second ball I rolled, I pulled a muscle in my ass and back. Embarrassment does come with an injury like that, but I can brag that I played through the pain and bowled three games without being able to bend over to roll the ball. I just sort of had to throw it down the alley to manage the pain. (Grunt, toss, thud, sound of pins falling.)

Clearly, I was not in bowling shape

But we still had fun, with my daughter providing the highlight by leaning over the fan on the ball return and putting the gate down as my ball was heading down the lane. CLANK. Then, as we were figuring out what black magic prevented me from picking up the spare, my ball rolled all the way back and I picked it up as if nothing happened. Good times.

Until I took my shoe off.

Something about the bowling shoe irritated the bruise and caused a golf ball sized hematoma on my ankle, confirmed by the ortho Dr. yesterday.

By bedtime, my foot looks like it belongs to someone you’d see on Jerry Springer who hasn’t left the house for five years because he enjoyed home delivery of ten large Domino’s pizzas each day and crushed his scale north of a 1,000 lbs.

But that wasn’t the best part of the appointment with the ortho. I received a bonus gift during my visit, which is so often the case with visits to the doctor. I choose door 3, but they surprised me with door 2. He told me there is calcification in the artery? Wasn’t clear on that, but he said he normally only sees it in much older patients and I need to see my heart doctor about it.

In CF years, I’m 132. Does that count?

Now I have to get a stress echo or cardiac cath, the latter makes me sweat and want to throw up. Not big on caths of any kind, especially on a blood thinner.

Caption says it all

Oh, and I have the tooth that needs to be pulled asap because the gum is bubbling again, but which I keep putting off because I need to get an oral surgeon to do it thanks to the blood thinner.

Despite all of this, I’m doing my best to power through it, have the best summer possible, and keep swimming with the pain and riptide until the tide turns and I can swim to shore. This is about endurance and mental toughness right now – both of which I often lack.

Or I’ve reached the point in the movie where the lead character has lost it and is waving his gun at the monster in the fog and screaming, “come on, if you’re going to kill me, do it. DO IT. What are you waiting for? Come and get me.”

The next sound you hear will be me firing my remaining shots into the fog.

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What not to do when someone tries to break into your car at 2:30 in the morning

[As if readers of this blog needed more proof of my stupidity, here’s more evidence. Clearly, I could place “what not to do” on most of my posts, but this is more glaring than the rest.]

I was having a bad dream, which is not to be confused with the parts of my life involving cystic fibrosis. This one happened while I was sleeping and woke me up at 2:30 a.m. I’d also been fighting a virus all week and my body temperature was screwed up, which made me feel more discombobulated at that hour (building the excuse for my idiot behavior right now).

What's a leek?

As I am the most paranoid guy in the world, I looked out the window of the front door on my way to the bathroom, as I always do, and noticed a white SUV in front of our house. Double take, it’s really there and the door is open.

Unfortunately, I’d been too lazy to replace the bulbs in the fixtures near our garage because I would need to find the step-stool, and because the light fixtures are a pain in the arse to unscrew and there are spiders in them and I didn’t have bulbs and hadn’t gone to Home Depot to buy any because even though I’ve passed the store 50 times in the last two weeks, I was too lazy pull into their parking lot, get out of my car, lock my car, walk into the store, find the bulbs, pay for them, get in my car, drive home and find the step-stool.

So, the driveway was darker than it should have been thanks to me, creating the perfect environment for thieving scumbags to go to work. Oh, and I didn’t have my eyeglasses on either.

So, I moved to the bathroom window to get a different view and I saw someone standing next to my wife’s car with an object in their hand – a tire iron? I don’t know what it was. All I know is after all the years of people stealing shit off of my car at night, I was pissed. A spark ignited in my brain, or what there is of one, and any chance of rational thought fled it as I walked with pace to the front door.

I didn’t disable the house alarm when I opened the door because I wanted the high-pitched squeal of the 30-second countdown to start in case one of them came running at me and I had to shut the door in a hurry. I can’t hear the sound anyway thanks to years of IV tobramycin, but I figured they would hear it loud and clear in the dead quiet of night.

Geek does Rhyme with leek

I opened the door and in what my daughter would call my “big voice,” I yelled “Hey you guys, get away from that stuff.”

I had to confirm this is what I said with my wife at least a dozen times because I couldn’t remember and I thought I must have yelled something like “get away from that car, low-life scum, before I come out there and rip your bowels out of your throat” or something cool like that.

But no, I didn’t say that. I said “you guys.” Not “you scum sucking criminals’ or “demon-spawn from hell car thieves.” No, instead I said, “you guys.”

Oh, and by the way, while I was using my big voice, my wife disabled the alarm because I’m always activating it by accident, which she thought I did again, unaware I was having a conversation with criminals.

At about the time I opened it door and yelled, it occurred to me at the very second the words left my mouth that I was yelling at exactly the kind of people in Los Angeles who worship and carry guns. The kind who probably don’t like being told what to do in a loud voice.

And there I was standing in my t-shirt and J. Crew boxer shorts covered in a charming “carrots and leeks” pattern (picture included) in the glowing light of the porch.

Could there be a more perfect and easy-to-shoot idiot in the history of targets?

I’m a lucky idiot because the perps ran to their SUV like the vermin they are and pulled a U-Turn in front of our house as my wife and stood in the doorway watching like dopes – defiant dopes – providing yet another possible double-homicide, target-shooting opportunity for the crooks, and headlines for tomorrow’s newspaper, with our daughter growing up parent-less.

And though I was calm during the incident, after I shut the door I was wound about my stupidity and it took me two hours of replaying my missteps before I could go to sleep.

Now the hindsight part of the story.

Though everything turned out okay, I’ve been flogging myself daily for not calling the police as the criminals did whatever they were going to do, which is a mystery still stuck in my mind and a question I can’t answer for friends who hear the story. What did I really see in the street-light dim of night?

I would have loved for the police to catch these guys. I love stories like that. But I blew it. I blew it. I let my anger overcome my rational thoughts and even endangered my family by opening the door, a key defense (the sound you hear right now is the whip hitting my back).

Though I may have saved the $500 deductible for my car insurance, it cost me almost a grand to have an electrician, locksmith and our alarm company come to the house on Friday. We now have new motion detector lights around the house, stronger locks in the doors, and a soon to be upgraded alarm with a panic button for my wife when I’m not home – and a different tone control panel I can hear when I am home.

Oh, and I did drive to Home Depot to buy five bucks worth of light bulbs. And I did take out the step-stool and climb up to unscrew the tops of the light fixtures to reach in past the spiders and cobwebs to unscrew the bulbs and replace them, which had they been replaced may have stopped all of this from happening by causing the criminals to go to a different house with a different idiot lording over it.

The silver lining: when I’ve away, I’ll feel a better with my wife daughter at home with improved security. But I’m not done yet. Soon to be installed: a fence or wall. A good fence may make for good neighbors, Mr. Frost, but an electrical one with barbed wire makes for a big FU to criminals when they’re flat on their backs unconscious waiting for the police to scrape their electrocuted, bloody bodies from the sidewalk.

That’s my story and I’m sticking to it. This is a lesson is what not to do when criminals pick your house to rob. Call the police. They like to catch bad guys. Unless you own complete body Kevlar®, of course, which means you can walk right up to them and beat them with your flail, which would feel pretty satisfying.

Stay safe.

Game of Thrones – Finished!

I did it. I finished all five books of Games of Thrones. Close to 5,000 pages. Thank you, Obsessive Compulsive Disorder, you served me well.

I don't usually read this genre but I needed to escape for awhile and this was the world I visited.

My adventure began when I watched the HBO series and wanted to know what happened after the final episode of season 1. And since I have my doubts I’ll live another five years to see the episodes tell the story, I downloaded the Kindle versions.

And oh, what a series. Books 1 -3, amazing. Book 4, good. And book 5, very good and better than the Amazon reviews led me to believe.

But there’s a catch. The story isn’t over. 5,000 pages and it’s still going – at its own careful pace, which is why some reviewers dinged it. Worst of all, it was six years between the last two books. I can’t wait that long for the next book. I may not have another six years.

George R. R. Martin, if you read this, get your writing groove on, please. I need to know what happens. Call me. I have some ideas. I’ll help you write some chapters. Hurry, before this blood clot in my neck gets angrier.

Valar Morghulis, but not until I’ve read book six.

The two Hells of cystic fibrosis

There are two Hells of having cystic fibrosis.

There’s the first one, which includes all of the torture that comes from having the disease – the coughing up of blood, collapsed lungs, hospitalizations, sinuses filled with polyps, breathing treatments, and anything else directly related to the disease. It’s a long list and longer than I want to capture here.

And then there is a second hell, which is one created from the pain and suffering from ailments caused by being in the churn of the medical system and/or medical devices. Or, indirectly caused by CF. For example: Blood clots. That’s a good one. Cystic fibrosis didn’t cause my newest clot, a medical device I needed to fight CF did. Welcome to Hell 2.0.

Fox thought these shots were called "Love a Fox" and stole them from me. Had to break it to him that they were generic "Lovenox." Silly Fox.

And what about the gut buster known as C-diff? It’s a beauty caused by taking too many antibiotics and/or being in the hospital.  How many times have I come home from the hospital feeling all shiny and new only to have C-Diff spoil my party? Still in Hell 2.0.

There are other side effects of being caught up in the medical grinder. Burned kidneys from the tobra, different strains of bacteria, nurses that slide into bed with you at night while you’re sleeping.  You name it, anything goes in Hell 2.0.

And what about medical bills? Don’t they deserve a hell of their own? Nothing like phone calls to insurance companies and hospital billing departments. Ah, the empathy and understanding of a customer service rep when a claim has been miscoded or rejected. Collection agencies? Devil’s spawn. This is Hell 3.0.

We’re fighting on more than one front here. How many Hells do I have so far?

I have one more. There’s the hell when my wife comes in and lets me know she has an early meeting in two weeks and asks if I can bring our daughter to camp.

Then the asterisk leaves her gentle mouth – “if you’re around.” Not as in “if you’re alive” but rather “if you’re not in the hospital with a blood thinner enema running 24/7.” Ouch, that hurts. Planning two weeks ahead can be impossible in . . . Hell 4.0.

That’s it. End of rant. No fancy ending. Just the simple feeling I’ll never be able to communicate the complexity of this disease to anyone, even my close friends. But I’m grateful there are people out there who get it and donate their time and money to the fight. They’ll be going to nice cushy cloud palaces in the sky when they pass. Me? I’ll be frying in Real Hell where I have to do three treatments a day and stick blood thinner shots in my stomach and . . . hold it. Bloody hell, that sounds like what I have to do now. NO, I’m already there. Where’s the elevator outta this place?

[p.s. I do know things can always be worse. I’m just venting some steam, letting it out. It’s all good. This too shall pass.]

Eating wet dynamite while the universe shoots me in the groin

Gunshot #1: I’ll be saying goodbye to a tooth soon. It’s fractured and needs to come out. Gunshot #2: I have big clot in my neck from my four-month old port. Thank you, universe, for the double tap to my groin. It hurts so good.

A month ago I started having pain in one of my back teeth. I grind a lot and have been too busy to get a fancy nightguard to prevent it. I ate through the last one. Along with the pain, I noticed a lump on the gum that would fill up with blood and pop and repeat the process.

The first dentist called it a fistula, which made me think of Dr. Nanos’s research cows that still cause me nightmares. The third dentist, a periodontist, told me I fractured the tooth and it needed to come out. Oh, and better yet, I have very dense bone and the tooth is quite attached to its current location. No rusty pliers and go-go juice will pull this one out. Bring in the power grinder and drill.

Yet, that wasn’t the best surprise of the week. Tuesday during my treatments I felt pain in the right side of my neck and trap. I had been to the chiropractor the day before and thought the neck adjustment must have injured something. But in the back of my mind I thought that it felt like clot pain.

Wednesday, the pain was still there on and off. When it started throbbing on Thursday, I went to the mirror and looked at my neck and there was a large golf ball bulge behind my collar bone. When I pressed on it, a pulse of fluid shot up my neck.

What hellish medical practical joke is this, Universe?

This is the Urgent Care television. Why do they even have it on the wall? I felt like ripping it down.

The doctor at urgent care took one look at the bulge and told me to go to the emergency room because they had a scanner for clots.

Off to the ER, my favorite place in the entire world. What a joy. And the visit didn’t disappoint.

I was lucky enough to draw the doctor who watched too much of the TV show E.R. and longed for the drama of patients with fence posts through their heads and fifty gunshot wounds to the torso – not patients with bulging necks.

“Urgent Care sent you here?” she asked, letting me know my case wasn’t worthy of a visit and that she’d never seen a clot in the vein that was swollen. Clearly, I was a douche bag to her at that point and an interruption to her day of more interesting patients who needed their heads sewn back on.

She called for the scanner, reluctantly. The scanner scanned me and found nothing, which brought about relief on my part. No clot. Doctor Thrill Seeker hated me even more and couldn’t explain (didn’t care) why I had pain and a pulsating lump in my neck. Go away, uninteresting patient. Come back when a gang banger has put a cap in your ass and your blood is spraying like a Yosemite geyser. Then I’ll be interested in helping you.

Ah, the joys of the random ER doc. Wonderful and delightful. But luckily, I have a good CF doc who agreed to take a look at it the next day at the hospital, even though there was no clinic.

After he looked at it, he ordered another scan. The result: a clot at the point the port enters my vein. The ER didn’t scan low enough by a fraction of an inch. I couldn’t believe it. Instant depression in a cup. This meant more Lovenox shots, of which I’ve done over a 1,000 for past clots. And being prone to coughing up blood, the shots are the equivalent to me eating wet dynamite. It’s not if my lungs are going explode like a dragon spitting fire, it’s when and where

So, that’s where I’m at right now. 5 Lovenex shots down. Who knows how many to go. The banging sound you hear right now is my head hitting the wall.

Or, is it the sound of irony since I got my port to avoid the clots the PICCs gave me?

Stay clot-free.