Music's Like a Snuggie for Your Soul

MUSIC'S LIKE A SNUGGIE FOR YOUR SOUL

Friday, March 26, 2021

3.26

Yay, March 26, World Epilepsy Awareness day, where we collectively tell seizures to eat a dick.

I've been meaning and wanting to respond to comments but my laptop is fooked and I'm a dork at typing on my phone like this. I appreciate your comments and love you all dearly.

I've been a monster of a combative, attention-seeking, drugged out seizure muppet. Pretty mortifying.

I'm marveling. How it went from 4-5 years of staying out of the hospital entirely (save for a broken leg having fun, oops) to my current state of affairs is beyond me. Im grieving the mostly normal life I'd grown accustomed to and plans I was foolishly entertaining for a second there.

I could probably type a flood given a keyboard and an afternoon. At the same time I have absolutely no idea about anything.

Since December I've been waiting to feel something like baseline. Something like solid ground under my feet. (Okay, not *concrete*, but not mire or smagma or quicksand, at least. )

Any time i muster some inkling of faith in the system it seems to get trounced in a jif.

Got myself into a pharma snafu. Failed to ask for the right help at the right time. Didn't want to be going off seizure medications cold turkey like a dumbo, but lo and behold, there i was. 

The hospital was the last place I wanted to be, but, i went.

I *just* wanted one, maybe two doses of fecking generic Trileptal. 

Last I knew I was B.S.ing with a great nurse I hadn't seen in years. The doctor was going to let me call for a ride and let me go home. I woke up intubated having been Life-Flighted to a hospital in Coeur d'Alene.

I'm free now. Not sure how long I was there exactly. Got to see my cousin and her cute kids, so that was cool.

Don't know if I'll ever, ever manage to talk myself into getting help from any hospital ever again. Fair or not. If you could die from embarrassment, I would have, so you can remove that mortal danger from your hearts and minds, dear friends.

I hope you're well. Haven't caught up with your worlds in a bit, regrettably. 

Please forgive my whinging.

Love to you from Wherever the Heck. <3 <3 <3

My cousin's son made me a masterpiece while I was hostage. My heart.



Wednesday, March 10, 2021

Twenty Twenty Wonderment

Seems I put the where? in January. February went better; I remember most of it anyhow. 

My thoughts and sentiments are mostly disbelief. How is this my story? I want to deny all ownership. A silly mix-up. A bad dream. Living under the sword of Damocles- certainly not mine, the life of a seizure queen. 

I was admitted to the hospital three more times, to the E.R. a few more times than that.

One of the hospital stays I was in two or three days, left AMA and remember absolutely nothing. Zip. Nada. Walked home with a poor, concerned, benevolent CNA and a doctor trailing by the sound of it. (Thank goodness I only live a few blocks.) I don't know if it was that time or yet another I'd eloped like a drunken ungulate with a CNA at my heels as I (supposedly) clopped right out in front of traffic on the busiest street in town, capturing the attention of the hospital CEO who witnessed from a short distance. Oops. Now, for better or worse, I'm on the risk management radar. I'm supposed to meet with them soon with an official care plan.

My most recent E.R. visit I was all kinds of blips for the risk management folks; some jackwagon R.N. tried to have me charged me with battery when i was combative towards him coming out of a seizure. I'm mortified. Defeated. Traumatized. After so many seizures in this hospital, in this E.R., after all this time. I thought we'd come to some kind of understanding, but yet again, I'm fighting hospital staff for my life before i'm fully aware of what's happening. Should i tell you what all I remember of it? Or is that just more of my attention-seeking histrionics? I feel like a magnet for melodrama. Good land.

It was too bad. I was so, so SO grateful that up until then all the time I'd been holed up there, i hadn't recalled anything traumatic. I wasn't shackled to a bed. No terror, despair or distress i was aware of outside my own battles against internal torrents. I don't remember any of it, but was told i'd even had an amicable interaction with an E.R. doc that once yelled in my face, "YOU'RE GONNA DIE!!! YOU'RE GONNA DIIIIE!!!", so that was cool.

I crashed all around my house when I got home, whacked out on seizure drugs. About the time I was finding my equilibrium, it was time to increase the dose again.

My mom and dad came. Each of them stayed a week or so. It was a mixed bag. I was grateful. It's good to see them, but it's also hard watching them grow ever more hyper vigilant as their seizure-sitting detail progressed. No Mom, just the dog. ... I'm fine, Dad, i think. Just a crash. I feel so bad. So guilty. Maybe shame, if i'm honest. I know the shame is self-defeating, but it's a monkey of a knapsack i just can't shake. I resented all the sacrifices they made to be there for me. I was sick of constant company with zero alone time. But i appreciate them and love them dearly. 

For a few days I was getting lost in my own neighborhood and hallucinating  and no one can say why. First I saw thousands of ticks and spiders in my house, but later I saw walking trees and a whole band of Native Americans on horseback, in full regalia coming down a hill, so that was interesting.

My friends were/are? basically fighting. One even had beef with my mom. Ugh.

My boss let me go me a week ago. I'm glad she did in the sense i don't want to be more worry than i'm worth, or some kind of charity. Though it does feel like a small betrayal. I wish she hadn't said anything.

I'm considering going on disability. I'm really torn about it.

My VNS battery is low, turns out, so i'm supposed to decide if i'm going to get that swapped soon. I can speak more specifically to that later, though.

I think of many of you bloggers so often, i hope you know. Elizabeth, who encouraged me to write. I think of you every time i see a Mazda; every time i venture baking any sort of pastry or cake outside of my skill set, (so basically all of them); every time i meet a hero parent fighting the system; when i hear and play a whole handful of songs; when i hear anything about Los Angeles. Not to mention a good deal of the however long it took me to get through the 824 pages of Brothers Karamazov, which i really enjoyed and likely never would have read absent your recommendation.

Ms. Moon i think of you every time there's a hurricane or some dude doin something crazy in the news in Florida (so like every day,  ha). I think of you when i hear about them Weeki Wachi springs or the mermaids; every time the whatever-we-have-on-hand soup gallimaufry turns out scrumptious; when i see a camellia, The Stones or Bill Murray, and so much more.

Sabine, I think of you when i ride my bicycle along the river; when i hear anything about Germany (you're the only one i know there); when our mom voices death wishes; when i'm adding music to a post; when i hear of any perplexing vascular diseases; when i hear of or meet anyone in wintery places who can grow things like Meyer Lemons and plumerias; when i hear of anyone on the cortisone/steroid roller coaster; when i'm feeling lonely waging war in pursuit of peace with a renegade body.

I love you all. 

Thank you for your support. 


Tater loves you too