A matter of time…

May marks six months since Joe died.

I fucking hate that statement.

It’s something that enters my brain every single day and it still feels like some sort of bad joke.

Twice in the past month I have told two different people I don’t know that my brother died and I realized that was the first time I’ve uttered those words out loud to a person not in my isolated circle. And hoo boy, while I knew it would suck, I grossly underestimated just how much it would suck, and how fast the tears would break free.

I’ve been playing the ultra fun game of Is this a Serious Problem? Or is this just Anxiety Bullshit?

I started having heart palpitations at random on a Monday.

BECAUSE WHY NOT?

I’ve experienced this before—a strong fluttering at the base of my throat and down into my chest. It lasts maybe thirty seconds and goes away and I don’t experience it again for months. Only it kept happening too many times a day for too many days with increasing pain in other places. When it had been happening for a solid week, I broke down and called the nurses’ line to seek advice. She asked me a bunch of questions and said I should probably be seen, finding me an appointment for later that same day.

I saw a doctor I didn’t know, explained my issues—and specified I was extra worried and/or paranoid because my brother just died in November from a heart attack—and she asked me many of the same questions as the nurse had, listened to my heart and lungs, ordered an EKG and a bunch of blood work, and then ordered a two-week heart monitor. The EKG was “normal” but it’s less than a minute of activity so unless I was lucky enough to be having symptoms at that very moment, it wasn’t going to get caught by the machine. The blood work showed my calcium was a little bit high, which would likely be solved by stopping the calcium supplement I’ve been taking.

My appointment was on a Tuesday. My heart monitor arrived in the mail on that Friday. It’s a self-application apparatus that you stick on your chest and wear for two weeks, take off, and mail back to the third-party company, who then sends the results to your doctor.

I had to take actual sandpaper to my chest and then clean it with alcohol swabs. My skin was not happy. Once the monitor is applied, you hit the button to activate it and then hit the button anytime you feel a symptom. You can shower with it on, but DON’T GET IT WET like it’s some sort of Mogwai. Just keep your back to the water. Then how do you wash your hair? Water is going to run over your shoulders. How do you wash your face without facing the water? I taped Press’n Seal over it with waterproof tape, and only showered every other day for two weeks to limit the water exposure. You’re also supposed to avoid sweating so as not to mar the adhesive from the underside. Which is great considering how much I sweat in my sleep every night.

The adhesive on the top wing started coming loose in less than forty-eight hours. And things started to get really itchy under the whole thing. I ended up buying tegaderm patches to use to keep it in place. It never would have lasted two full weeks otherwise. The bottom wing stayed stuck, but was a little rough around the edges by the end. My skin reacts dramatically to just about any adhesive—I had lasting red marks from the tape I used every time I showered and I only had it on for twenty minutes at most each time—so I was downright shocked my chest wasn’t a complete disaster when I took the monitor off. They provide an adhesive remover swab that kind of reminded me of Goo Gone. The skin was a little red, medium-ly rough, and then got dry and flaky like a peeling sunburn.

They give you a paper log book to write down what your symptoms and corresponding activity are, but there’s only room for about ten episodes, so unless you have very few symptoms in two weeks, the book doesn’t get you far. They also have a phone app that you register with your monitor serial number and you can log your symptoms that way and then they can match up those entries with button pushes. It’s not crucial to hit the button or log an entry with every single symptom, because the monitor still records every heartbeat, but reference points certainly help in determining what’s going on.

After I took the monitor off, I dropped in in the mail the same day on a Friday. It arrived at its destination on the following Monday, I had results by that Friday. I was able to download a PDF of my results at the end. Most of the entries are pretty standard, even heartbeats with the periodic jolt of some irregularity.

But there were a few episodes that looked like the scribblings of an incensed toddler. This is what happened every time I took a shower. (This really reminds me of the involuntary artwork I would make in my notebooks in class in junior high and high school when the pinched nerves in my shoulders would cause my arm to shake uncontrollably while trying to grip a pen. Oh hey, 30 pounds of textbooks, I have lasting damage from you.)

I don’t know what it is about showering during all this nonsense, but it did things to my heart rate and kicked up my rougher symptoms every single time—and still does.

However, my results were UNREMARKABLE. When things are happening, it’s my heart beating prematurely out of rhythm, and then overcompensating with a stronger beat, which causes the noticeable symptoms. This is something that anyone can experience at random, but sometimes it happens more often and there is frequently no identifiable cause. It’s definitely reassuring that there is no evidence of a more severe issue, but WHYYYY is it happening so much?

Things have improved over time, not happening as often, but it’s not gone completely, and showering is still weirdly triggering. I saw my regular doctor for my annual physical and went over the results. She ordered more blood work—that all came back normal. Common treatments include quitting alcohol, nicotine, and caffeine. Great. I don’t use any of those. They also use beta-blockers. I’ve already been taking one of those for high blood pressure for years. We can up the dose slightly, but run the risk of my BP and heart rate getting too low, so I’d have to keep a close eye on that.

A probable cause could be too much stress and anxiety—HAHAHAHAHAHAHAHA—which I have had no shortage of in the last year and a half. When running down a list of shit that’s been going on, an educated medical professional looks at you and says, “That’s A LOT,” it’s both validating and makes me want to cry because I KNOW. In taking into account those stressors, and my mental health history, both doctors more or less asked me HOW DO YOU FUNCTION because I am not medicated or in therapy. I don’t. That’s the problem. So the most viable course of action is really finding a new therapist and psychiatrist and that is overwhelmingly exhausting just to think about. But the first doctor I saw did give me a recommendation for a resource outside of their network that has more availability that shouldn’t require me to call at 7AM on a Monday and cross my fingers that there are still appointments left (more than two months out at that) by the time I get through being on hold for an hour or more.

I don’t know when it will happen. Just like previous attempts, it will happen when it happens.

I’m tired.

I’m really fucking tired.

But at least I’m not having a fucking heart attack.

A Matter of Time
The Killers

2 thoughts on “A matter of time…

  1. yep, definitely sounds like POTS. Have you already found that through your own Google searching?
    Also, damn, that sucks! you have been through a lot, and are continuing to go through so much, and I know you have Bob, and that’s amazingly wonderful, but definitely not enough support. I wish there were something I could do from here to help.

    1. I haven’t seen POTS come up in any of my symptom googling, but I keep seeing people talking about it elsewhere as it seems like everybody is being diagnosed with it lately. Some of the symptoms do seem to fit, especially the showering/overheating trigger, but other parts don’t really line up. My symptoms tend to be so sporadic or very situational. I just invested in a new Fitbit to help keep track of my heart rate because I’ve been compulsively checking it every time something feels off. My blood pressure has been mostly fine, sometimes a little high. I can go long stretches without any symptoms (aside from the daily shower nonsense) and then they come back without warning. It’s obnoxious and frustrating to say the least.

      I really do appreciate you checking in. I get so buried in my own head and I’m so terrible at initiating communication with anybody. There’s a lot more stuff that I haven’t even written about too, but it’s mostly things I have zero control over. I’m working on what I can little by little.

Something to say?