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.

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

More of the Same. But Different

Hi, 

How's things? 

My life has taken a few loops and unexpected turns I can't articulate here much further, for now, but i'm grateful. 

I'm a poor historian, but I'd say since I last updated, the seizure scene has been mostly copacetic. I'd guess I've maintained an average of 3-4 months between. I had one cluster, i remember, but even then I was able to avoid the woo-woo bus and the hospital. 

I still have the same part time gig (building maintenance at an event center). My boss has been pretty exceptional regarding the seizure factor. She even called my sister when I had one there once, and helped me get home without summoning the whole brigade. 

My sweet dog, Olive, died. My sister moved out of town. All my grandparents are gone. My leg is pretty well healed. You'd hardly know there's a big titanium rod in there most of the time. I'm back playing hockey, biking and kayaking. And that's life, i guess. 

I learned a lot in counseling. Mostly on my own, granted, in attempt to better understand and trust the process. In any case, I liked the lady, she seemed smart and I trusted her. Then she breached confidentiality. Twice. Absent threat to life or limb or any reasonable justification. I tried to let go. It wasn't anything major, admittedly, but I couldn't get over it, so I quit.

So here i am with another randosaurus report from the nutcase junkshow bunker. 

I can't think of any notable lifestyle changes or stressors. I had low key anxiety about going to the hospital in general, post Rona, i suppose. It was high on my running list of objectives- stay out of Gritman (our local E.R.). And I had great success- check! Until I didn't. 

I was on my bike running an errand. It was dark. I was afforded the luxury enjoyment of a brief debate. The prospect of an extemporaneous bicycle race home against my sometimes fractious, irascible neurons through two busy intersections was tempting,,, i have the brain and body of a prize fighter but i'm not as young or fast or resilient as I once was. I was on a stretch of sidewalk where I knew someone would find me eventually. 

Then I dunno. Not sure exactly why i was transported. My hunch is i was still unconscious when medics got there, and the opportunity to administer drugs and abscond with a sedated, seizure-zonked patient was understandably preferable to waiting around for the whole seizure puppet song and dance to transpire. I don't usually get the whole story, fortunately/unfortunately.

I think my brain tends to spiral in hospital settings after so many fights and desperate-feeling times there. I dunno. I've had seizures cluster outside the urgent care scene, though too, so who knows. 

So whether I needed to be there or not, there i was. It's my understanding none of the seizures were particularly severe or prolonged. I don't remember any part of being in the ER. I don't think I remember anything on the hospital floor until the second day. 

Praise Jesus for a phenomenal hospitalist; i was able to leave that night.

My friend was able to stay most of the duration, thankfully, it sounds like, and has since helped me piece together some details. Not lots but some.

I remember taking out my I.V. toward the end. I don't remember feeling brash about it, just done, and resolute in my decision to vacate the premises. I don't remember what precipitated the verdict.

The hospitalist came in and talked to me extensively. Like a really, really long time, from what I recall. Ack. She must have been adequately placated, though, with whatever promises I made to follow through with the freshly drafted pharmaceutical game plan. (Sure. Maybe. We'll see. I'm trying.) Barf. In any case, she let me free.

I remember eating beef stir fry that tasted good. (It was the only thing I'd eaten, apparently.) I remember looking for bed alarms to disable and realizing it was an I.V. drip machine squawking.

I don't know why anyone is so nice. I feel like a colossal waste of resources. 

I just come crashing onto the stage like a wind up monkey bashing cymbals together, and disappear again. I don't deserve the care and concern I've garnered here or anywhere. 

People rallied around me. People I hadn't seen or heard from in a while helped coordinate care for me my dog and my bicycle.

I was gross. I'm always so gross. Doomed, infernal white bed sheets. I wasn't shackled or restrained to the unit in any way though, hallelujah. I kind of remember talking to my dad on the phone. I thought I saw my sister, but it was only Tami they said. Ah, well. 

So, however it all went, it wasn't overly traumatizing. I feel a little bit gas-lit regarding my lived experience on versus off antiepileptic drugs ('Anti- epileptic' drugs.  Isn't language, funny?) But oh well. I don't deny science. I understand action potentials and most of the proposed mechanisms of action; I'm just afraid they're overly simplified heuristics is all. Even they admit the exact mechanism is unknown for most of the anti-seizure medications.

I'd quit pharmaceuticals entirely for the better part of a year without any notable repercussions. Yeah, yeah i hear you, I'm just trying to eliminate my reliance on as many criminal, enterprises as possible these days, okay? 

I wasn't in a bad place mentally. I'd made some great friends working a regenerative style farm. I'd identified some of my flawed thinking and schemas and recognized healthy and unhealthy attachment patterns in therapy, so my relationships seemed to be bearing the fruit of that. 

I don't remember feeling particularly stressed until getting out of the hospital. Hopping back in the saddle on the western medical pony is giving me anxiety. I'm sure the new primary care docs in town are perfectly lovely, and the local neurology options are much improved. I just can't get myself excited about them. Sorry. I want to feel something other than 'over it' already, I do; I'm just failing at the moment. Wish I were better at just going along to get along.

I asked Dr. Brown if she'd chart i was faking or that I told her i was, at the very least, so maybe they'd hold the phone on the benzos. Hold the phone on everything.

I'm grateful, don't get me wrong- overwhelmed how people just deal with me all my associated biohazards and antics before I'm even cognizant and thereafter. I'm wildly impressed and humbled by that. I dont care much for the system but the people are wonderful.

Do I need help? Sure. Do I think the Rockefeller deathcare mafia system is, this time, for once, prepared to render that to me in my shiny, new, combination therapy, big pharma prescription deal? Eh. 

Do I believe marinating in a hospital setting after seizures is the best recovery policy for me? No, afraid not.

Do i think my people are amazing, that people, in general are amazing? Totally. 

What do you think, dear reader? Of my half-crocked strategy to tell them, many thanks, but i'm a faker. Please unsubscribe me from your service. ? Honestly I remember so little, I could be faking. At least I can't rule out concomitant dissociative seizures, certainly. I won't make mountains out of, nor deny real trauma I've been through. So there.

Just seems no way an otherwise normal, healthy person like me could or should have so much trouble with this. I totally get how the demon possession mythos became intertwined and persisted with epilepsy. Sorry. I feel gremlin infested. I'd buy that.

Just tell me the new, properly metered incantations 'ox-car-baz'ah-pine', 'la-mo-tri-gine' will channel the benevolent  pharmakia spirits equipped to rescue me from the jowls and bonds and bowels of physical and spiritual possession. 

I've tolerated both of the drugs independently, at one time, so hopefully that bodes well. Ugh. I'm sure in a week the side effects will vanish and we'll be blissfully on the road to seizure freedom. That's how this all goes, right?

I don't want to be obstinate or lazy and have everything erupt like a spectacular, purulent infection, making an even bigger, smellier mess of things. I don't. But I really, really don't want to get back on the roller coaster of new medications, new doctors, and the bloody rest of it, either. I don't want to be such a royal waste of resources. I just want to be left alone. Pretty sure. Yikes.

Besos. Abrazos. Best to you, adorable reader. Thanks for being here.

Alli