Pericarditis and spoons

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Remember Friday, when I got my dream job? Well, minutes after publishing that article, I headed over to urgent care, and they sent me to the emergency room. I’ve finally learned my lesson: as someone with half a heart, when I have chest pain, I need to skip urgent care and go straight to the ER. Fun!

Apparently I have pericarditis. I say this because even the ER doc isn’t sure, and that’s how life is when you have tricuspid atresia and Fontan circulation with an extracardiac shunt. For goodness’ sake, my spell-checker didn’t even recognize three words in that sentence!

While I was undressing for the ER, the nurse casually mentioned “I see you have a zipper,” and it took me a moment to realize he was referring to the tall vertical scar on my chest. That was a new nickname to me! The single closed-heart surgery and two open-heart surgeries all happened before my third birthday, so I don’t exactly remember them, but the scar remains, as do some thin horizontal stripes on my chest X-rays.

My favorite part of pericarditis is that it presents like a literal heart attack:

Acute pericarditis begins suddenly but doesn’t last longer than four weeks. Future episodes can occur. It may be hard to tell the difference between acute pericarditis and pain due to a heart attack. - Mayo Clinic, 2024

I’ve never had a heart attack, and now I really don’t want one.

The spoons metaphor is common among disability communities. It was coined by a writer with her friend in a restaurant, where each spoon represented a bit of energy. Chronically disabled people have to plan their actions to conserve their energy, where others don’t have that limitation. Like many people, I toggle back and forth, healthy for most of the year but occasionally sick for weeks at a time. I’m used to saving spoons, but I’m certainly not happy when I have to do it.

As much fun as it was to have a heart condition as a kid, if it’s the cause of these stupid weeks-long illnesses, I don’t think it’s preferable to normal hearts and zipperless chests. Bronchitis knocked me out for all of October 2025 and then some, and now pericarditis took a lot of March and is trying to steal April!

I want so desperately to have unlimited spoons again. I want to write code and help kids and research politics and play with friends and cook delicious food and exercise with my dog. I want to lie down without being in pain. I want to cough without worrying if I should call 911. I want to eat breakfast without wondering if it’ll be my last breakfast.

I was very healthy in very early January, and very excited. Many irons were in the fire, and one of them was drawing up my last will and testament. It never hurts to be prepared. Then Renée Good was killed. Then Alex Pretti was killed. February was less eventful, except for the whole “war in Iran” and “bombing over a hundred schoolchildren” thing that my government started. Now I’m sick again, for who knows how long. I have symptoms matching a heart attack. I don’t want to die. Not yet.

Anyway, I finally finished work on those legal docs, so my family now has everything they need for when some stupid motorist inevitably runs over me. As I was walking home from the ER about an hour before sunset, I crossed a lighted intersection. A car was going the same direction as me, but turning left, and he didn’t have a left turn signal. He stopped. I was midway through crossing in the intersection, and we made eye contact. And then he accelerated. And turned left just past me. If I hadn’t noticed, he’d’ve probably slammed his brakes and gotten into an accident with oncoming traffic. Or he would’ve severely injured me. This was the worst incident in a while, but something like this happens maybe once a month.

I just want unlimited spoons, please. I hate spending them dodging traffic.

Now it’s time to call the cardiologist and see what they can do. I didn’t have energy to play board games with friends or try cooking cacio e pepe this weekend. Once I’m off the phone with the cardiologist, I’ll be rescheduling board game night and cooking up some pasta. And then I will rest, because I can and I need to.

Mocha, Luanti, CASA, Wynonna, political research, and my career can wait a little bit longer. I’ve got a life to live 🤓

See also Blog - markwiemer.com