Google Docs & Puzzles

I did the thing you’re not supposed to do; I googled my symptoms. 

But first, I just wanted to follow up my last post by saying that I am making appointments with neuropsychs and neurologists and trying to retrieve the MRI I got in the back of a truck last year (that one is a story for another day). If you haven’t read my last post, that’s probably a good place to start. The TL:DR is that two Saturdays ago I fainted and wound up in the hospital for a few days and don’t really still fully understand why.

I have always needed to understand the why; it's like an itch in my brain that loudly and aggressively demands to be scratched. Genetics are partly to blame; I come from a family full of neurodivergent engineer types. Questions without clear answers are annoying and, in the case of medical mysteries, infuriating. I thought medical stuff was going to be like House, mysteries solved by a brilliant if curmudgeonly doctor within the confines of the 45 minute episode. I've found it to be more like a game of hot potato and I'm the unfortunate spud.

Most of the time, doctors I’ve met are happiest when they get me out of their office ASAP. No clear answers means no clear explanations, and it's easier to pass me along to the next heath care provider. I've spent so much time reliving traumas on the phone with doctors offices and insurances, that I would rather take the pain or illness than voluntarily step foot back in a doctors office. If I'm making a doctors appointment, something is very wrong. Unfortunately, on those rare occasions when I do make it in person, I'm usually treated like a hypochondriac. I walk out of the office filled with shame and a reminder why I don't go back, and the cycle repeats.

When I was in the hospital last week, I told the nurses that my blood pressure was likely high because doctors and hospitals made me panic. They nodded understandingly. White coat syndrome. I forgot it had a name. Sometimes naming things can help.

Unfortunately, this was not one of those times. I spent my stay fluctuating between fear, panic and anxiety, numbness, and a deep resonant sadness. Par for the course for an average doctors office visit, but those usually last under an hour after which I can retreat to my home base and pull out all of the coping mechanisms I've collected over the years to help re-regulate my nervous system. An hour long visit can wipe me out for the rest of the day.

This visit lasted 64 hours. I had never stayed overnight in a hospital before. There were fleeting moments of hope, when I thought I may get an answer or better understanding. For the most part, I oscillated between fear, panic, numbness, and chest heaving silent sobs; I felt trapped in an exhausting cycle of old familiar PTSD symptoms.

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When I first got to the hospital, they found immediately that my sodium and potassium levels were very low. Over the next 24 hours, the levels returned normal. My head still felt weird. Since the ambulance, it had felt a little numb or swollen from the back of my head to my forehead.

Everyone kept coming back to, Oh well you were probably dehydrated, or drunk, or hadn’t eaten enough or it was too hot.

When the doctor repeated this during my discharge, I vehemently disagreed for a few reasons:

• I have a fear of being underhydrated, so I always have a bottle of water on me that I refill a couple times a day. That night, I’d drank between 48-72oz of water between 9pm and 2am, and had mostly been drinking just water for the hour preceding the episode.

• It was my friend's birthday and we’d gone to a favorite local spot where instead of munching on shared apps, I ordered one of the specials because it looked good. I ate the whole plate of pasta bolognese with balsamic glaze and ricotta and only just refrained from licking the plate clean.

• It wasn’t hot, in fact it was lovely. I overheat easily (thanks w*llbutrin) and usually have a hand fan on me, but I wasn't really using it that night. Our home bar was packed with two different parties that Saturday night, so most of the regulars hung out on tables outside. There was a lot of laughter and f*ckery about that night and I remember being very happy in that midst.

• Because it was crowded, and I do not enjoy crowds, I really didn’t drink near my usual amount. And like I mentioned earlier, I spent the hour or so before the episode just drinking water, getting ready to head home after a nice night. 

• It wasn’t vasovagal either; I’d stood in a circle chatting with friends for a while, sat back down, and had none of the woozies or other signs.

• Lastly, and very importantly, half a dozen witnesses tell me I did not hit my head at any point. 

So when I went from talking to out cold with agonal breathing and my lips turning blue in a very short time period, it was f*cking scary. I know I am incredibly fortunate that several of my friends who were there that night are or were nurses, and I am beyond lucky one of those happened to be one of my best friends of 15 years who clocked immediately that this wasn’t normal and got someone to call an ambulance. Brady stayed with me through that night, talked me thru panic attacks, and helped show me how to better advocate for myself. She helped organize care of my service dog, and brought her to visit later that evening along with some clothes. I’ve called her a lifesaver before jokingly, but after this there is no doubt she has definitely saved my life. 

The doctor listened to my concerns, but I was left with the feeling like she was humoring me. When I was discharged I practically skipped out of the hospital, not because I was cured, but because I couldn't stand to be physically stuck in a place without answers; the itch was getting worse but I left feeling pretty defeated.

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A few days later the itch became too much and I did a simple and ill-advised google search of my symptoms.

…low sodium, low potassium, fainting episode with agonal breathing & blue lips, head feels weird….

To google’s credit, the response said stop reading and IMMEDIATELY call 911. I thanked the future robot overlord AI and clarified that this already happened and that I was looking to understand what happened and why. 

AI obliged and explained what a sudden drop in sodium meant for my brain and passing out and what the breathing and lips was about. Suddenly, I was terrified all over again, but it was a different type of scared; fear without understanding was eating at me and pulling me down into a depressive numb, and yet fear with understanding was still fear, but at least I could see more of the puzzle now (even if I didn’t know where to put the pieces). 

*Please note I am terrible at puzzles because I have terrible spatial reckoning and too much inherent chaos gremlin energy for such a quiet, long, peaceful activity. I have been banned from puzzles with cousins, and I do not blame them. So puzzles might be an incredibly accurate metaphor in this case.

Am I giving up my human doctors and sticking with Google Doc? Absolutely not. That would be a swing of the pendulum in the opposite and wrong direction. Am I using it for medical advice? Definitely not. Did I use it to take the information at my disposal and ask to understand it better? Yes. It’s still weird. And it’s not my single source of truth, nor would I ever want it to be. 

It’s a just a piece of the puzzle. 

I’m trying to be better about sharing my puzzle pieces instead of hoarding or hiding them. I’ve found sometimes the right answers come from unexpected places and connections. There’s a kind of magic in the things serendipity throws across our paths, even if not all of it is pretty or pleasant. Maybe someone else has the next piece of the big picture, but how would they know unless I show them my own? And vice versa?

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The reason I’m not allowed to puzzle with my cousins anymore is because I accidentally menaced too hard once and cannot be trusted. During a rainy summer afternoon about ten years ago, a bunch of us sat on the porch working on a very shiny star wars puzzle.

There were so many silver pieces and nothing looked like anything that made sense. So rather than be helpful, I defaulted to chaotic gremlin mode and hid a few pieces in my hoodie when no one else was looking. Because I roll with disadvantage on both stealth and dexterity, I got caught pretty quickly and reluctantly returned the pieces before bouncing off to find other cousins for an actual fun board game.

Maybe an hour later I hear commotion on the porch and a crescendo of indignant yells.

Are you f*cking serious…

NOT funny, cousin!

Why are you like this? Where is it?

I walked back to the porch to find a perfectly shiny movie poster-looking puzzle with Han Solo and Chewy, fully complete. Except for one piece, smack in the center.  I turned my hoodie inside out and shook it, flipped open my pockets: I even did a bra check to see if I had dropped any and just forgot about it. Nothing.

I found this hysterical. It was an old puzzle, used by a bunch of different families over the summer. It was very possible the piece had always been lost. Of course, no one believed me and I haven’t been allowed to puzzle since.

Especially when, a month or so later I wore the same hoodie and found the missing piece wedged into the bottom corner of my front pocket. It had somehow stubbornly held itself hidden despite my actual best efforts. Not a single one of my cousins found it as funny as I did.   

What does this memory have to do with the medical puzzleness of it all? Probably nothing, but it still makes me laugh ten years later. (Keep your puzzles, cousins. I like BETRAYAL(TM) better anyway.)