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Nova Terra

~ Just another way of stalling on my other writing

Nova Terra

Tag Archives: friends

The Day My Brain Broke

16 Saturday Apr 2022

Posted by lionsofmercy in Blog

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Tags

dehydration, delirium, friends, gastric sleeve, illness, life, love

I’m tempted to stop going on vacations.

I tried to take a couple of weeks last month because I just wanted time off to chill and make art. Instead, I had to wrestle with the fascinating experience of Abilify discontinuation syndrome. The best way I can describe that was that it was akin to being on a three-week-long emotional acid trip. I never became psychotic or delusional, although I did have a couple of major epiphanies–the Abilify, in its desire to save me from myself, had been bossing around my dopamine for over a decade, and had padded me with chemical bubble wrap to protect me from my emotions.

Very luckily, I have mad professional skills if I say so myself, and thus I did all the stuff: I was in close communication with my providers, I used my lovely support network, I journaled, and I made art. After roughly five or six weeks, I was back to normal, other than a mild case of tardive dyskinesia, which seems to be on its way out an ångström at a time.

However, after the above, I was ready to go back on vacation. Last Thursday (April 7, 2022) I was delighted to be scooped up at work by Angel and Saint, the lovely friends who live in a restored farmhouse in rural Connecticut. (A side note: I had many Zoom tours of this house, making the actual experience a tad surreal, as if I were in one of those numinous locations in a dream you just barely remember.) We chatted, I met family members, had a snack at teatime–and then as evening approached, it began: I felt a little queasy. The itty bitty tummy is a sheeping diva, and so this was nothing new. I went to bed at my usual ridiculous hour, Angel and Saint went to choir practice after teaching me where the coffee was, and I figured I’d feel better in the morning.

I didn’t. Itty bitty tummy was empty, so when the inevitable began, it was extra-awful. I was grateful that my hosts were on a different floor so I could be wretched in privacy, but at 4 a.m. some survival instinct kicked in and I tapped on their bedroom door. We ended up at an acute care place, where they did things I don’t remember (Reader, take note). And then it happened: I stopped making sense–or memories. I had severe aphasia; I am told that somehow I used the word karaoke in trying to talk to the doctors.

Angel filled me in on Friday later. I have a few dreamlike flashes here and there–realizing one of my earrings was missing, being snuggled by the fiercely protective Angel, my strong and silent daughter having hysterics at my bedside, and one long vagueness of trying to find words and gamely tossing words out in hope that somehow people would understand me. But that’s it. (Angel told the docs some important piece of information, and apparently I greeted each of the *three* repetitions with surprise.)

This was worrisome, so they did some CT scans and whatnot, and told us it was either dehydration or a mini-stroke. Have a nice day, ma’am.

Angel wasn’t having any. She got hold of my daughter, who agreed with Angel’s gut feeling that I needed a real hospital. So back north we headed–Angel’s husband Saint logged sooo many hours driving hither and yon!–and I ended up at the real hospital in my city. I was rapidly admitted, given an IV and my fifth anti-nauseant shot, and lined up for testing in the morning.

I woke up feeling perfectly fine. Maybe not ready for breakfast, but that was a moot point, as I was NPO since midnight because testing. I could talk and I remember Saturday quite normally, as opposed to the long blanknesses of Friday. After an echocardiogram (heart ultrasound), a stress test (I am quite out of shape, but not dangerously so–test was embarrassing but I passed), and a brain MRI (John Cage meets industrial meets percussion minimalism! What a LOT of different noises! The tech now thinks I’m a weirdo) the Real Hospital said, “Uh, dehydration and *maybe* a TIA? She’s fine now! Check in with your neurologist just in case!” And home I went, my vacation having been exceedingly short.

My neurologist is a mighty man of science with more compassion and work ethic than I’m used to. Instead of calling the office to talk to him in three months, I used the patient email system and he got back to me immediately.

It hadn’t been a TIA after all–the symptoms went on too long and weren’t quite right. Instead, I had been literally delirious from dehydration.

Delirium? Really?? At first I found this a relief–no stroke issues to fret over, and by golly, I had always feared I was that lady in the old movie whose aneurysm was inoperable, but now the MRI gods have proclaimed Mr. Brain to be A-OK. However, as the week progressed (and Mr. Brain finished getting back online), I figured out that delirium is kind of near the end of the dehydration journey. What the what?

On that Thursday, I had had a small beverage with lunch, and then a couple of sips of tonic water about three hours later. (In between I had the delightful social occasion of gabbing with Angel and Saint as we drove down to Connecticut, so BIG distraction.) I didn’t feel particularly thirsty. However, by the time the acute care people put in a line, I hadn’t been able to hold anything at all down for ten hours, meaning that on Thursday I had one cup of coffee and one half-bottle of tea–and then no other fluid for about 16 hours. (In case you’re wondering why the lack of peeing wasn’t a clue, I will overshare that I’m used to not needing to pee, especially at work, where there are distractions.)

Gentle Readers, this sort of thing is very bad. People go on hunger strikes, not thirst strikes, because those would be very, very short–about three days long for the average person. I keep forgetting, but Teeny Tiny Tummy means I’m no longer average: I am supposed to be working much harder on getting in the basic raw materials. Protein, yes–but water comes first.

I am guesstimating that I’ve been chronically dehydrated for weeks if not months. Not entirely sure why, but I’ve been making do with about a liter and a half per day–which is about half what it should be. Thus, between that and having lost 115 pounds of backup storage space, I hit the wall relatively quickly.

As a coda: I felt AWFUL over causing such a kerfuffle and needed the reassurance of talking to Angel *twice* before I forgave myself for having needed to be loved and cared for. It would seem that I have more to work on than just my fluid intake . . .

So check yourselves, folks. Two liters per day, or whatever it takes to pee clear. (Your urologist will also thank you for this.) Mr. Brain needs that, else he breaks. And a heads-up? If you’re lucky like me, dehydration can cause nausea and vomiting, setting up a vicious cycle which needs emergency medical care: I now have a large adhesive burn from that first IV, but that may have saved my life.

.

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On Visiting

08 Sunday Dec 2019

Posted by lionsofmercy in Blog

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Tags

adventures, bus, family, friends, life, people, travel

My choice of title has a bit of personal irony about it. (The Alanis Morrisette kind, not the Greek drama kind. Just chill out, people.) You see, “Visiting” is the term used in my Cats and Mages books for magickal teleportation: No muss, no fuss.

Instead, I’ve been visiting the human way: by bus. There’s a reason bus travel is a fraction of the price of other methods; they are small packages of Purgatory. I am old school and if I had my druthers and a whole pile of money, I would take the train—smoother travel, more leg room, and civilized restrooms.

Planes are buses with wings and interrogation from Homeland; their only real benefit is that they get you there a lot faster, so if you abstain from caffeine, you won’t have to pee between, say, New York and Chicago. (Although their toilets don’t have a disconcerting rush of air on your ying-yang while you’re trying—and in my case, usually failing—to relax your traumatized and nervous equipment enough to do the job. In the interest of fulfilling the Interwebs’ true purpose of providing too much information, I will share that I can only pee on a bus if I am close to severe physical pain.)

And then with any travel, really, there’s the schleppage. Because I replaced my laptop with a tablet, and can’t negotiate its wee keyboard, I travel with an additional fullsize keyboard and trackball, which makes for a bulky backpack which is also stuffed with all the things I falsely think I’ll get to on the trip, or forgot until the last minute. I also have a CPAP machine, which, being a prima donna, has its own small case that needs to be stowed in the overhead and thus possibly forgotten.

But I digress. This essay is on visiting, not traveling per se, so we need to talk about the reason for the purgatorial urine retention, which is to see important people in my life. I love these folks a whole lot, which is why I’ve done an unprecedented amount of busing this holiday season.

First up was my trip to my sister and brother-in-law in New Jersey, which was a lot of fun once I got there. I returned home with loot from their fantastic thrift store and a quarter of a metric sheepton of silk scraps. (I’ve always wanted to make a classic crazy quilt, and the Junior Sister scored big on the going-out-of-business sale of a fancy lingerie maker.) And then there was the ride home, which is when the bus broke down halfway between Hartford and Boston. At night. It had lost power, which meant no heat and no phone charging. Our luggage was lined up on the side of the road in the dark while we awaited rescue. Sigh.

Second is my current expedition to New Hampshire two scant weeks later to see my good friend and writing, shopping, and schmoozing buddy, who abandoned Boston several years ago to my great dismay. So far this trip has also not gone as planned, because my hostess’ back went out right beforehand. (The shopping took place anyway, as she introduced me to Amazon’s lightning deals. Sigh again.)

The thing about visiting is that you are taken out of your usual routine. Each hostess inquired about my essential needs with some anxiety, and I replied that all I really needed was pudding to take my evening meds. But that expanded when I arrived—Sis had run out of distilled water, which I need for my CPAP machine, and the writing buddy hadn’t been able to get to the store because of the back, so she provided scrumptious homemade apple-and-pearsauce instead of pudding.

As it happens, neither household does dairy, so my Morning Beverage routine was disrupted. A well-meaning young plumber had misinstalled my sister’s john when replacing the wax seal, so the potty was catawampous, which the reader may by now guess was disconcerting, and my New Hampshire friend keeps her house at a temperature I find bracing, to say the least. (I have Raynaud’s, so keeping my core temp up seems to help keep my hands functional.)

The result of these small deviations from the paths of my life is that I have ended up feeling like a princess, and not in a good way. It’s as if a magnifying glass has been focused upon me, and the bright light of Difference is scorching the skin of my complacency. If I were honest, there’s a whole slew of things I find “essential,” and going somewhere else just points that up, because very few of them are in fact necessary to my vital continuance. I can get by without my CPAP for a night. I can take my pills with food. I put whipped cream in my tea at one house, and almond milk at the second.

What’s really important is maintaining connection with the people: getting to see their faces, hearing their jokes and stories, commiserating with their pain, and peeking into their own life paths. That’s priceless, and well worth a broken-down bus or two.

Back to the bus fail: I learned three things that night:

First: Don’t overpack. Even though I had my sturdy brother-in-law at one end and my son and faithful Sherpa meeting me at the other, I ended up schlepping all that silk along the roadway myself.

Second: Don’t travel with your sweet little messenger bag that doesn’t zip. I dropped all my stuff trying (and failing) to scramble onto the first Good Samaritan bus that stopped, and lost my pricey prescription reading glasses.

Third: People are awesome. As soon as the other passengers heard about the loss, at least four people leaped off our cold and dark bus into the colder and darker night, looking for my glasses with their cellphone flashlights—and they were found. It utterly transformed the night for me.

And in the end, that last is what visiting is all about. People are awesome, and each treasured friend is worth the adventure.

“We are plain quiet folk and have no use for adventures. Nasty disturbing uncomfortable things! Make you late for dinner!”—Bilbo Baggins

Nova Terra

just another way of stalling on my other writing

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