Monthly Archives: December 2015

12%

That’s the score at the moment. From the point Sparky was plugged in and on duty, it’s been called into duty twelve percent of the time. Sparky’s presently set to kick on whenever my heart starts to idle too slow, and whenever the heart rate, whatever it might be, decides to drop the tempo faster than is good for my brain or body. I get the feeling no one expected it to fire up quite as much as it is – pre-implantation much of the talk was that it’d be a fail-safe for those pesky little heart pauses. It seems, according to Sparky’s interrogation (yes, that’s the technical term. The pacemaker gets interrogated. Vee have vays of making it talk,) yesterday, my little friend showed that my heart can be cruising along at a reasonable, normal clip on moment, and the next drop straight to a low idle. Kinda explains how I could sometimes be up and running, and abruptly it feels as though everything becomes exhausting and confused. Twelve percent of the time, my heart wasn’t pumping the blood my brain and body needed.

I’m still trying to decide which I feel more: relieved, concerned, or vindicated. I’m relieved for every time I feel Sparky kick on, and trust me, I do feel it. I’m still getting used to it, but I know that odd feeling of my heart beating so steady and strong would be something quite the opposite if not for this technology. I’m relieved that Sparky is doing what it’s supposed to do, more than I even expected.

Which brings me to the concern. Twelve percent? Without Sparky’s intervention to pick things back up, how long did my pulse linger in the zombie-zone? I knew things had been getting worse. Will that 12% grow, and if so, to what point? Why? The heart’s electrical systems can be damaged by viruses – and I’d always believed this all went from manageable to out of control after a severe summer cold back in 2014; things were already wearing at the edges, but that’s when my health really went down the toilet.

And vindicated. I have the most undeniable “I told you so” healing into the muscles of my chest, with a slight tell-tale bulge and scar as proof. I could post the time-lapse photos…the blossoming bruise patterns and colors showing the path of internal slicing and poking are fascinating, but a bit cringe-worthy. From childhood right up until last winter, I’ve lived with something invisible but more and more debilitating, under the exterior of a seemingly healthy female human. There’s a down-side to being too healthy, physically at least, especially when cardiologists spend most of their time trying to coax the majority of their patients into good exercise and diet. My ‘complaints’ were dismissed as everything from hypochondria to stress and anxiety. Far as I know, Sparky doesn’t alleviate any of those symptoms.

So, for the decades of professionals who dismissed what I knew in my heart (haha) was wrong, who told me it was only in my head or in one case, that I should see a psychiatrist and stop wasting his time, you’re damned right, I wear this scar proudly.  And for anyone experiencing what I’d lived through, the confusion and brain-fog, the dizziness, imbalance, fatigue, out and out blackouts, PLEASE don’t accept the kind (condescending) reassurances that it’s all in your head. Yes, I understand, anxiety can create symptoms quite similar to ones I’d experienced, and make it feel as though your heart is stopping. But the heart actually stopping, something I realize now I’d lived through more times than I want to imagine, is something entirely different. If you’re experiencing something you know isn’t right, don’t simply accept that it’s all in your head. I’m a generally positive person, and I tried to maintain an “I’m okay” attitude while I kept pressing on in the face of declining health, but if you read between the lines and watch as the frequency of posts dwindled, you’ll see a snapshot of things unravelling. I’ve been struggling for years, not that I wanted to accept it.

Anyhow, now that all that wonderful, oxygenated blood is getting pumped through my brain, voluntarily or otherwise, I can FINALLY FINALLY FINALLY finish, uhh, get back to, start all over, all of the preceding, with this little novel I’ve been futilely attempting to write. I’m telling you, the nicest computer with the neatest writing software and a head full of (too many) ideas – they’re all wonderful, but without a reasonably operative brain, turning all that into a novel isn’t exactly the easiest thing.  Truth be told, it was already becoming a struggle by the second book. I couldn’t understand how I’d been able to write till all hours of the night the first time around, and barely keep my eyes own or head focussed past ten by the second. Looking back I can actually pinpoint spots where my heart must’ve really begun going downhill, and that time stands out. Fortunately for me, I don’t quit. I refuse to give up, in fact, the hard something is, the more determined it makes me. But as my heart continued to slow, no amount of determination could overcome my fogged head.

Then I got another chance. The Fludrocortisone seemed to be doing the trick, and I dove back into life with both feet. I collected up my writing – which turned out to be a jumble of chapters, brimming with energy and tension, but…let’s just say they were a bit disjointed at times. Sorting it out became a monumental task, along with suddenly becoming dockmaster at the biggest marina on the Hudson – a job I just couldn’t refuse, especially since I was doing so great…at first, at least. By mid-summer I’d attributed my lack of writing focus to the hundreds of boats and acres of docks now under my supervision. Once the season passed I’d have plenty of time for writing, I promised myself. Then I could focus.

Well…that didn’t work out like I planned, did it? So, here’s where things stand. Book three, Evacuation Route, IS mostly written. Mostly. Multiple times, in some parts, in fact. Funny things, those brains. It seems, on occasion, I completely forgot/mis-filed/??? entire chapters, and wrote more than one chapter on more than one occasion. For the most part they’re quite similar, with a few variations. Thanks to my outlines (more like life-lines, when you keep losing your mind. Seriously, don’t ever underestimate the value of oxygenated blood flowing to the brain,) all written during my more lucid days, the story stayed on course. And thank you Scrivener for a program that is allowing me to organize all this disorganization to a point where I’m distilling it down. Beyond that, my personal research into the affects of decreasing blood-flow to the brain have given me some incredible insight into life within an occasionally unreliable brain. But that’s a post for another day.  I have too much other writing to do today, and while this didn’t take long to tap off, (and won’t be picked over for typos and grammar, so there,) sitting up for moderate stretches of time is still a bit uncomfortable. Each day things hurt a bit less and my writing time lengthens, but as I recover I still have to give myself some breaks.  Like right now.

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Battery powered!!!

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I got all wired up and electrified on the ninth, and thank you all for the helpful encouragement and reassurances. I’m feeling a bit sore and bruised up, with an energy level I don’t think I’ve ever had. I feel awake, alert, alive — it’s amazing the difference some nice oxygenated blood flowing through you can make! And it’s funny to feel ‘Sparky’ kick on, it’s an odd but not uncomfortable feeling of my heart beating strong and steady. It’s reassuring, firing up at those moments when things would normally go black. The syncope that was a fact of life is no more! The hardest part is keeping me still right now, which I’m doing, but I want to run outside and play, damnit! And apparently I don’t sound ‘loopy’ anymore, something I’ve been told by everyone who talks to me post-Sparky. I’ll tell you, it’s a hell of a lot sharper inside my head — it’s as though everything became focused, and I hadn’t realized just how foggy everything had truly become. The first organ to suffer from poor blood flow is the ol’ brain, and without that nifty bit of grey mush, trying to finish a novel, trying to even write, had become a constant struggle and losing battle. Happily, I don’t think that’ll be a problem anymore. Back is that person who used to write until all hours of the night. I’ve lost a lot of time, and I’ve got a whole lot of catching up to do. The only thing stopping me now is that sitting up for long stretches still hurts, a little less each day.

I’ll admit I’m amused that it looks as though I’d been stabbed in the chest/shoulder. I mean, technically it *is* a knife wound, which is what I casually told someone in the store the other day, as she stood staring. Her eyes widened in horror and she said “Really?” I smiled and replied, “Yeah. But you should see the other guy.”  Her face was priceless, and I reassured her it was nothing that violent, merely a pacemaker. But in it’s own way the pacemaker is an invasive procedure, and there’s a whole lot of fun healing going on inside my chest, and right now I can feel weird pressure from the leads, which I’m sure I’ll eventually stop noticing. A little discomfort is a small price for knowing my heart won’t do anything wonky at some inopportune moment.

So, one week in and so far, so good. I do feel a bit odd on occasion – almost light-headed, but in a warm, pleasant, sort of tingly way, not dizzy/cold sweat/going down sort of way. That’s normal, I’m told. Right now, I’m running on the ‘Factory Default’ settings. That’s how everyone starts out, then they tune the chip to adjust how things are running…sort of like VW with my TDI. Ah, technology.

I’m just wondering — does this affect my status in the Tin Foil Hat Club?