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 such 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 terribly 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 I 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 DIE!!!", so that was cool.

I crashed all around my house when I got out, whacked out on seizure drugs while they were being titrated up in my system. 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. 

For a few days I got lost in my own neighborhood and hallucinated like a Merry Prankster. Craziest trip i've ever been on and no one can really 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 neat.

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 kine 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

Saturday, January 2, 2021

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 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, given my proximity to the station, and the opportunity to administer drugs and abscond with a sedated, seizure-zonked patient was presented and taken. I may have had a second seizure which may have prompted drug intervention and mobilization but that's not entirely uncommon for me.

I think my brain tends to spiral in hospital settings after so many fights and desperate-feeling moments there. I dunno. I've had seizures cluster outside the urgent care scene and absent early benzodiazepine administration, though, also. So there's that. And i lived to tell the tale. So there's that too. 

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 remember. 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 such 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 it sounds. 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 mechanism of action is unknown for most all 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've had foreboding about militarized medicine and technofascism well before all this and pray i'm wrong about all of it.

I wasn't in a bad place mentally, I don't think. I'd made some great friends working a Salatin 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 feel like I'm in a good place, as terrible as it might be to admit in the 2020's. I reconciled my relationship with death and fate a long time ago. 

I don't remember feeling particularly stressed until after I got out of the hospital. Now getting 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 want to write the hospital CEO directly. Tell her I've been malingering at Gritman and various hospitals for decades and Dr. Brown (the superhero hospitalist) is the best. She really was. If anyone could single-handedly restore my faith in the system, she would have. She reinforced my faith in general- in humanity, in this story. (This one you're reading, and all of them; all of our hero's journeys. THE story, however it goes, you know?)

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. Even for pay, I'm wildly impressed and humbled by that. I still 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







Saturday, September 29, 2018

Sorry for turning this place into such a cesspool. I don't mean to come here, dump shit and disappear, leaving behind dead and beheaded parcels like the feral, deranged UPS cat. I've always been a shit corresponder. Always mean to do better, and my ineptitude consistently betrays my care for the people I value most here and in 'real life'. Not sure what that is.

I've been existing at humdrum for a time now, it seems. Quitting my job has eliminated a lot of bullshit stress from my day-to-day, but I've also missed a lot of support in the forms of good friends and financial stability. I have a part-time gig that pays hourly what I was making after 5 years at my last job, but I need to find something else soon to make ends meet.

I don't know if I'll ever snap out of it. I'm a slug. I don't write, or art or music any more. Just dull, uninspired day-to-day work, eat, sleep, repeat.

My leg is mostly healed. It's one of those things like swirling salt into a wound that reinforces the fact you're not a normal person and even healing a broken leg presents a few frustrating, admittedly painful setbacks for someone with seizures. But, thankfully, being fairly young and previously fit, I've managed to slog through to the lighter end of the tunnel and, save for some residual strangeness, and more twinges than pains, i can walk a fine mile or two without a stick, and bike around town, no problem.

Wanna my sweet X-Rays?

The lines are the traction device. (It was not very effective, apparently.)

After surgery.
(Dr. added pen marks to show callus formation process whatever)

New leg! Said they used the longest rod they make.
Thank God not having to wait for a longer one on special order!

I even got my shit gathered and packed for two week-long river trips this summer, both of which I planned and organized and went off mostly without a hitch, miraculously, save for the one in my literal giddy-up. The trips had been my carrot during my femur recovery process and they were both incredible weeks in some of the most treasured places, but while I'd expected to feel rejuvenated after, I've felt nothing but flat. Like I stepped out of the boat and fell back on my face and just stayed that way. 

I don't really want to leave my house most days. Taking for granted a new leg, taking for granted any day that isn't FUBAR'ed by unseen and uncontrollable forces, but I'm depleted. Resigned. I feel so guilty for feeling so stuck, and letting it all pass by without due reverence, a heap of indolence, intentions and inaction. 

My mom has been helping me pay for counseling. I hear it's a slow process, but I'm hopeful. So I'm trying to work on things. Maybe I can make good and start giving back all the life I've sucked from the planet. Do more good, give more for a change, and be less blah, and debilitated by defeat and fear and hopelessness. I have so much. I know how lucky I am. Most viscerally. How glad to have it all return when it comes reeling back.

What is my fucking problem?!

Thursday, September 27, 2018

Foof

Life can be such a gut punch.

My older cousin has had seizures for a while now. For one reason or another we weren't in direct communication at the time. I'd talked with my aunt in regard to things that had been helpful on my own seizure struggle bus ride.

Yesterday, my aunt woke up with two sons. When she got home, she only had one. My cousin died from a seizure while he was alone at work.

This is his 10 year old son.


Dang. Some days it all seems so exhausting and miserably futile. Why bother when the gremlins are set to pull the rug out from your feet again and again? Can I just stay curled up down here forever? Send puppies and kittens. 

Friday, February 23, 2018

Now for my Next Trick...


Geeze, what's up with this blog, guys? Got all the manure for the garden and forgot to plant the flowers. I really effed up this time. I feel like a dumbass. Too embarrassed to tell anyone outside my family yet, really.

I broke my dang femur. Clean in two. It was doing something fun, for a change. (Which isn't to say i don't get to do plenty of fun things, but that I didn't get hurt having a seizure or doing something stupid.) Naturally, my insurance doesn't start until March 1st. 

I still can't believe it. But it could've been worse. It wasn't a compound fracture. It didn't cause significant vascular damage or subsequent life-threatening bleeding. My pain threshold has been knocked up a few notches. My hospital experience was night and day better than my last one. They got me into surgery right away for some intermedullary femur nailing zaniness. We've asked, but have yet to see any x-rays, but it sounds like the surgeon is going to take more in a couple of weeks when i go back. Do you want, or should i hold off on the gory details? 

Foof, dear reader; who does that? 

Sunday, February 11, 2018

Gram

Gram age 80 Hiawatha Trail Idaho


Oh Gram.

How lucky for us to have spent such a sweet and relaxing Thanksgiving with you, just the four of us (mom, little sister and me). I still can't believe we ever relented in our objections to let you cook a goddam turkey, not to mention your taking charge of biscuits, gravy and mashed potatoes. It was amazing as always.

Watching Lion with you the next day, bundled in two adjacent mounds of blankets in your living room, tears creeping out and plunging down the spillways of our cheeks while the rest of the family made the seasonal retail bender, is a memory I'll always treasure. How grateful to you for enduring more of my inquiries about your trying childhood, and filling in random gaps of family history. I'm so glad to have asked when I did.

I should have known. When we got the text you'd broken your fetching femur, we should've raced up there right away. It seemed sensible postponing the voyage over winter roads until the light of morning. But the call came. (Of course it did.) We were too late. 

My gram was spunky up until the end. She didn't languish. She would've hated that. She went out with Dilaudid on the hour. She was still living independently in her own home until the last day of her life, which, with any luck, was under a pleasant blanket of sedation.

My Gram was ornery, but mellowed with age (as with our mother). Her Fundamentalist Christian values and Fox News watching tendencies had toned down in recent years. She changed her own oil and executed basic repairs and matters of vehicular and home maintenance until she was 80. She was fastidiously clean to an obsessive-compulsive, even antiseptic extent, yet she took a loving to Olive, and often invited her beyond the barricaded section of linoleum we'd dutifully ensconced her in during our visits.

Jen and me pall-bearing with all our handsome cousins. I'm in the rear. Photo and caption credit to our aunt Tami

For all her fundamentalism, my gram was hep. She texted, she facebooked, she even Instagram'ed, i'm sure chiefly in to connect with us. Did I? Enough? Enough that my gram felt more loved than lonely? Probably not. I didn't visit or call on a sufficient basis. More shame I will carry. 

Is she watching me now, you think? Sipping hot tea up in the clouds and shaking her head as she looks down on my unkempt house, the paw prints, the dust and the piles. If she's thinking I'm lazy, she's right. I'm totally meh. Resigned. And shame on me. How acutely aware I am of the precious, ephemeral nature of all of this. How any sense and every second of fucking normalcy and every bit of fresh air and iota of autonomy is not to be taken for granted. Yet, here i am, just meh. Looking like it might take me all year to recover from one little swatch of last summer (physically, emotionally, financially...). 


Anyhow, this is really belated. My Gram died before Christmas. I have loads to post, but my grandma's death, and general insecurities at my given stage in life have left me somewhat deflated. I'm always thinking about blogging. I think of you all often. Please forgive my heaps of outstanding comments. I'm always reading, but sometimes I'm a little late in my catching up. No need to drop any sorries or sentiments here, just had to acknowledge the passing of a sweet soul, you know? 

I still suck at life, at least the requisite adulting aspects. Looking forward to updating some more, but at this rate, no one be doin any breath holding in the meantime, okay? I'm a shit friend. I regret it. I intend to do better, always, and then i don't. The scritching and rancor of cognitive dissonance. Oy vey. 

Thank you for being here despite my sporadic correspondence. 

Bowing to you in great deference and love. 

Warm regards from Idaho,

me

Wednesday, November 29, 2017

Bewildermint - an After Dinner Treat (pt. 6)

Even though I still couldn't walk a straight line, I went back to work pretty much right away. There were times throughout the day i had such bad double vision, I couldn't read the words on my computer screen. (It could have been quintuple vision, but i'm not sure i could count to five at the time, so.) The drug levels fluctuate like less-than amusing carnival rides. At various points you could find me out in our gravel lot, sitting like a broken ballerina or a fallen clown, clutching one of the large, 55 gallon, garbage bins, head bowed inside and heaving. While I might look amazing in a tutu, I have no grace when it comes to them spins.

My sister and her wife, Tami, stayed with me. They live about 4 blocks away, so it wasn't a total hardship. (But still a pain, for sure.) I was a junk show. If falling down with seizures wasn't enough, when i stood up too fast, I passed right out.  

I'm sure passing out is strange for everyone, but it's a trip for me. A few of the times i've woken up, my legs were still bouncing. [Some people have convulsive-like movements when they pass out?] I've never been cognizant during an all-encompassing seizure, and i rarely remember waking up. It's bizarre laying there and self-assessing when you're still in some full-body paroxysm after all the times you've done so unaware. Maybe i've died during a seizure and now i'm conscious and leaving my body. But wait, i can still *feel* my arms and legs... I broke glassware falling on my coffee table and also a full-length mirror. 

I also fell on account of the vertigo I was still experiencing from the drugs, like being stuck on a heinous carousel ride at warp speeds. When my higher nighttime dose peaked, I was so whacked, I'd fall from even a crawling position. I'd have to yell out to my poor, hyper-vigilant caretakers, "I'm fine, i'm fine, i'm fine!" Just crashing, no seizure.


Na 'Aina Kai Botanic Gardens Kauai
Like i mentioned in a previous post, I'd been calling in to work from the hospital. People took it in good humor, thankfully, but I guess I was pretty loopy over the phone. (I have no recollection. I was shocked to learn i'd called in most of the days.) They knew somehow, i'd been Life-Flighted and I was pretty sure, despite the copious truth serums, I wouldn't have divulged that particular detail. (Though i've certainly said and done things on those drugs I never imagined.) EMT coworkers who may have known, are consummate professionals and, in my experience, unfailingly discreet. Sure enough, it was my dad who had called in and divulged all the gory details- thanks Dad! Gah, as if they weren't aware enough already on the work front. (I know it was well-intended, but seriously.)

I'd called in one morning and a coworker friend answered. I can't remember the story exactly as he told it, but basically I identified myself, confirmed who he was, and promptly hung up on him. I got transferred another morning into my manager's voicemail box. I said, "Hi [manager's name], i like your voicemail greeting. Bye." <click> Not even relating a shred as to the intended purpose of my call. Who knows what i liked about her voicemail.

One time, a number of years ago, I was benzo'ed and gonzo'ed in the ER and invited a bunch of hospital employees, cops and EMTs to a party at my house. Thankfully, someone clued me in, so i was aware of the event prior to everyone's arrival. It wasn't totally out-of-character; I enjoy get-togethers, but hosting larger affairs that include more acquaintances than close friends, is totally anxiety-provoking territory for me. 

At least 20 people came. Aside from my boyfriend-at-the-time ruining a strawberry-rhubarb pie filling, (having mistaken burdock in the yard for rhubarb), everything went without a hitch. Thankfully, burdock is totally edible, and while the pie might have tasted like shit, we didn't, even nearly, poison a good portion of the first-responder contingent of Moscow. My plant ID superpowers recognized our blunder before the filling hit the shell, and we even had enough time to make another batch before the party.

Anyhow, the entire town was a construction zone this past August. No exaggeration - there were street closures and blocked lanes that appeared all over without warning. I swear, they must have run out of signs! And given my level of intoxification, there was no way I was biking. On one hand, with all the roadwork, it seemed easier and safer walking places in any case (despite concomitant sidewalk closures). On the other, Olive the Wonder Dog's goodsent abilities allow for enough time to get home from practically anywhere in town by bicycle, but not necessarily enough time by foot.

Olive the Wonder Dog
I can't remember how many days into the work week I made it; It wasn't the first day back, at least. About midday, olive made it clear it was time to leave, or i'd be creating a scene. With her rate of walking, these days, odds were a snow flake in Hades we'd make it in time. I abandoned her and started booking home. 

Well, i might have made it, but with all the single lane nonsense, and mostly unregulated intersections, it took longer to navigate homeward. I made it to the highway junction, just two blocks short of my house. There was actually a flagger there. Even if she'd been able to usher me across expediently, by then, i didn't have a prayer. I was half off the curb when I timbered. My dome hit the asphalt, and not the curb or the concrete, so it was more superficial than it could've been. I guess one of the construction workers sat and held my head, while others called 911. This totally mungged up the major intersection even further. I can't imagine how many poor people were held up in their cars in the hot sun, bearing witness to the whole spectacle. 

I ate shit a few more times along that stretch in the subsequent days, but i've already written a novel here so i'll spare the details. My sister guys, in turn, were wary of allowing me to walk anywhere. (I love my commute!) I'm an introvert, which isn't to say i'm not gregarious at times, but i definitely re-energize in my alone moments. I was dejected. Thankfully, as long as i was pushing my bike, I could toddle almost anywhere wearing a helmet without relinquishing my last shards of pride. That placated my people a little.

More whackadoodle anecdotes to conclude the saga, but I suppose it will be left 'to be continued', yet again.

In the meantime, besos y abrazos to you, dear reader.

Wednesday, November 22, 2017

Out of Dodge [Still in the Brambles] (pt. 5)

Okay, going back to the tail end of July/early August. It seems so long ago, but I suppose I'm still reeling. 

Shortly after swooping onto the scene, my mom emerged victorious in her rounds with Dr. Bugpoop and co., thus freeing me from the hospital confines. She waited before driving home so she could accompany me to an appointment with my primary care doctor the next day. 

It's an hour and a half home and I don't remember any specific details from the trip.

I was a little bit less on the swerve by my appointment time the next day. I remember most of the dialog. At the end, my physician turned to my mom and said, "Yeah, I just lost a 26 year old with epilepsy in my practice. She died in her home a few months ago." As if our time in the ICU and a life flight helicopter ride hadn't already conveyed the gravity of the situation. Thanks for putting my poor mother at ease, doc!

Well, not as much progress as i'd hoped, but some. To be continued, (yet again).


May your Wednesday be wondrous. 

Love and kindness from Moscow.

Saturday, November 18, 2017

Getting There


This is a video from one of our commutes home last spring. For Christmas we upgraded Olive's rickshaw, so she has a full, legit cart with a cover now, and doesn't have to take mud and grime in the face, flung from the back tire. It's a boring video (although, I'm partial to the lead character), and forgive the squeaky breaks and lack of editing etc. It sets the stage for some eating-of-shit I did along that section of highway the weeks following my hospital stint this past summer. (Setting the stage - mark my words, the post is going to happen.)


So that's how we roll, except there's a new little dog bounding along beside us now. As of today, i'd say it's going pretty well:


Hope all is well with you. 

Thursday, November 16, 2017

Winterfall

                        Dancing lady ginger, Globba winitii Na 'Δ€ina Kai Kauai
Lord, y'all. I suck. The most productive thing I've accomplished all month, probably, was donating blood yesterday. Back in my swimming days I was an amazing donor. Now my veins are kind of shot (thanks, likely, to the understood vesicant nature of both phenytoin and diazepam), but generally after a prod or two they can get er done. I used to be deferred fairly often for low iron, but a phlebotomist tipped me off to eating cream-of-wheat the night before, some years ago, and I haven't been staved off for anemia since.

The blood folks reach out to me regularly since I'm O+ (reminder to self- see, something in me is positive right now!) and despite that pesky Rh factor, they seem to quite enjoy the 'O' types. So, I'd agreed to a set appointment time the day before. Until then my hair had been in a singular, twisted dreadlock for a week or two. It's cold and dark here already - easy to get away with knotting in a bun and putting on a hat, so that's been the extent of my beauty routine. I didn't want to interface with any healthcare professional without washing and brushing my hair though, so la-dee-dah, I can rake a comb through the individual strands of mane now.

I got back about a week ago from a fairly spontaneous trip home (if a haole girl can call it home?) to Kauai where I was fortunate enough, once-upon-a-time, to attend be enrolled in high school (and graduate, somehow), and where my amazing dad and my antithesis-of-evil stepmother live. Things had leveled out fairly well seizure-wise prior to embarking on the trip, but I was still kind of meh, even after all these months since my ICU clusterflock. Also, my shoulder has been separated since August, so I knew i'd be somewhat less activity-equipped. I hoped that regardless, the warm weather, sunshine and family fix would be beneficial, nonetheless. It was, but may have done more to bring to light, rather than dry up, some bits of sadness, and seizures, and shit, which I guess could be a whole post of its own, if i ever get to it.

So, leave it to me to complain about a trip to Hawaii. I still haven't drummed up much on the work front. I did get a few killer offers while on island, which feels great, but realistically... I don't know. I don't know anything. I'd still love to finish telling you about how whacked things turned out to be the weeks following my jailbreak from the hospital, but it's still kind of a muddled smudge of memories and basically petulant drivel.

I did, however, get a new dog. Sheesh. My sister arranged it all. I was, of course, reluctant once it all came to light. We knew we wanted some overlap with Olive, so she can be a positive influence. She came from the humane society down in Boise, and had been identified as a smart girl with service dog potential. She is very smart, but as i expressed to my sister early on, I need a good dog; not necessarily the smartest dog. Ha. Poor Jen (my sister). There will never be another Olive. We both expected a mellower new pupper, though, she's only just a year now. She listens *great*, but she's a handful (zoomies for daaaaaaaaaays). She's a retriever mix of sorts; we think maybe some whippet as she's fairly slight and made to run, but could be springer, setter or saluki for all I know. She's 43 pounds and they don't expect her to get much bigger, which is great by me.



New dog, Tater
I wish I could say i've been getting up with her every day (as she deserves) and jogging a few miles these nice winter/fall mornings, and making the most of my unemployment time, but with the exception of a day or two, of actually fucking rallying, i mostly haven't even got my ass dragged out the door until after noon. I'm depressed. The dogs are good sports about it though, thank goodness. I'm not totally debilitated and do get them out every day eventually. I've been going to counseling. I really don't want to take any other medications on top of the seizure drugs, especially since I'm still stuck right now at the higher doses, and they're plenty mood-altering. I don't really know what else to do. I know I probably need to get more connected and engaged or something, but for me that shit (commitment in general?) can also be stressful and daunting. (Is that a cop-out? Yes. Am I a schmuck? Totally.) Right now i'm feeling anything but brave.

I meet up with my sister and/or friends every now and then, but mostly my days consist of venturing to the grocery store when we run out of one or more of the basics and hitting the trail or a park in between. One of my main concerns was the logistics of getting anywhere with two dogs, but Tater has taken great to running alongside the bike while Olive rides in the cart. She seems to do fine waiting patiently at the racks until the old trusty doggo and I have wrapped up the shopping. Not sure how it's all going to work out in the end, but it's been fairly entertaining in the meantime. Oh, and she is very sweet.

Forgive my absence again. I guess I'm loathe to come and merely complain, but then again, when things are great, I sort of hate to come and gloat about that too. An ungrateful curmudgeon of sorts, I suppose.

Thank you for you. I've been reading and loving you as a fly-on-the-wall from both Idaho and Hawaii, but have dropped the ball in the comments. I over-think everything and words are hard sometimes. Your pictures and stories and tirades are sustenance, though, in these aimless, lonely days.

Love and gratitude from cold and dark North Idaho.

Tuesday, September 19, 2017

Oh Lord (will you ever, ever have a plan for me?)

I love Prairie Home Companion. I missed this episode a few months ago, but fitting for the day, it popped up on my Facebook feedamajig. Josh Ritter is from this little town I've grown to think of as home. 



Sometimes I wish I could curl up inside a speaker box and just let the bass notes and crescendos reverberate through and around me like blankets.  

Josh Ritter could sing me to sleep, or strum me back together.


Dinglehopper? Snarfblat?... In any case, thanks for all the fish...




Well, you were all with me for the beginning, and, well, here, I'm happy and sad, not to mention, terrified, relieved, resolved, reeling, yet resolute, in my reporting an arrival at the end.

In some state, still, of disbelief, i'm crying while laughing, and trembling a bit with uncertainty, as i pass along my tiara. I'm no longer the Queen of Broken Things. Yesterday I quit my job. I'm burned out on life lately, but I've been burned out at work for a year or two, at least. After attempting to effectuate change in my department for so long, it's become clear that the company and I have very different values.

I meant to stay a few more months until I was 'fully-vested', but i couldn't take it any longer. My patience has been dozered down to nothing these days. I am not a very good automaton. Sometimes stopping in life to scrape a turd off your shoe, gives you too much time for re-evaluation and introspection. I've had a few turds to scrape off recently. I'd far and away rather have a job that inspires me intrinsically than one that pays higher wages.

Haven't told my sister or my mom.

So much for my half-crocked plan to have a solid lead or two on some job prospects before throwing the towel in. Maybe it was ill-timed, ill-conceived and rash. The frontal lobe regions of our brains are correlated with matters of judgement - mine may compromised. Oh fucking well.

I really don't know guys.

But, I'll have a lot more time for blogging, and i still have more of that confounded story yet to tell. Foof.

Thank you for being here.

Thank you for being.

Alli

Thursday, September 7, 2017

Befuddled and Breaking Free (pt. 4)

The big pink thing on the horizon is the sun

The only doctor I remember that week, (save for a flash of a dark-complected, black-haired, female), was a neurologist far younger than your typical Neurosaurs, but a serious dweeb-and-a-half. We thought he was making a feeble attempt at drollery when my sister mentioned something about organic and he quipped, "Oh, organic? So you'd rather be eating bug poop? Because you can't have bugs on your plants without bug poop..." We har-har-ed for a second, until we realized he was serious. Between glyphosate, 2-4-D and the litany of other endocrine disruptors and known carcinogens, I'd rather eat straight bug poop out of a squeeze tube, but whatever dude. 

Somehow my old-as medical records were still in their system, and they're still consulting with a specialist I haven't been to in years. Gah. Shouldn't the advent of electronic medical records clue them in on this? They were precious and denigrated me in all means of censure and condescension in regard to the fact that last time I'd been seen by that provider, i'd been prescribed two drugs, at higher doses than I was currently taking. (Never mind i'd had some of the worst seizure control under their careful watch...) So, in the matter of a day or two, they ramped up those meds. One that i was still on was doubled, and the second (Vimpat/lacosamide), went from zero to the highest recommended dose.(?!) Plus, i was still being thoroughly and utterly benzofied. Holy crap, Batman. The hospital room was orbiting around me so fast, if i had spurs on, theyd've sparklered like the 4th of July and set the sheets and curtains on fire.


Sunset breaking through Labor Day haze

Both of the drugs give me insomnia for a week or so after increasing the dose. The Vimpat makes me dizzy and the lamotrigine gives me strange vertigo. It feels like drunk spinning, but focusing your eyes is more difficult. They feel like they're darting rapidly, left to right in their orbits. When you try to sit or lay still, it feels like your body is swaying side to side like your eyes, but almost imperceptibly like a shy, yet speedy metronome. (Or maybe that's how drunk spinning feels and i've just forgotten?) All night I spun and spun. So even if i could make pretend i was napping on a 90 degree beach somewhere, sleep was not the fortune in my cookie. Self-pity and exhaustion overwhelmed me sporadically, welling up as a hot, heavy weight in my chest and seeping out in tears and contorting my face in miserable anger. The waves of emotion did nothing to mask or quash the spinning or the nausea, they just added different salty  to the sleep-deprived shit sandie.

No-filter Sepia view from the same place last week
To all of our chagrin, i was still having seizures, only one or two a day, but some, nonetheless. I don't really remember much of anything about them. Except one. It sounds foolish in telling, but in my bleary, depleted state, it was traumatizing.

There were bed alarms. I don't remember attempting to disembark from my white, padded, battleship, but i do remember bed alarms. And, whether it matters or not, i don't believe i was ever balled up weird at the head or foot of the bed. With the world spinning, curling up and laying on my side was a less-than-preferable position. I laid mostly on my stomach, hands clawed into the sheets and alternating bent knees in hopes one might finally anchor me into the ground, or prop me stable like a kickstand. Anyhow, I woke up with my body hanging down off the bed and my face on the cold floor, within a short reach of the back wall. (I tend to go back and to the right when i have seizures.) I remember waking up and feeling the mess of cords and wires. I couldn't move myself backward onto the bed, or pull myself farther forward. I was wedged between the rounded corners of the top and side rails. Blood was rushing and pooling in my head. I don't know if it was panic or the way my body was jammed, but breathing was more terrible effort than easy. There was blood around my face. I couldn't figure out if i'd hurt myself on the way down there or if it was coming from my mouth. I remember thinking nobody would find me until after i'd passed out. Where are your bed alarms now?!

Welp, I guess they found me, and it was at least some time before morning, but i don't remember many specifics after that. Either that day, or the day after, my mom came and kicked ass and took some names. (She's been working in the healthcare realm for the past 30 some-odd years.) And not so much in regard to that incident, but had the power of persuasion over Dr. Bug Poop and Co. to get me out of there. So we got all the discharge paperwork, and after a full week, that i mostly don't remember, I finally got to go home.

And I wish the saga ended there...


Hat's off to all of you. Stay safe and dry, and free of smoke and fires.

Love and all it's verses,


Alli



Wednesday, August 30, 2017

Still Bewildered (pt. 3)

Smoke haze sunsets of late

So, back to the saga... I was teleported, (rolled? pneumatic shoot-ed? toddled? - don't remember that part), out of the Neuro ICU, up to the Neuro floor, where, as I 
mentioned before, was 85 G-forsaken degrees, at least. Granted nobody sleeps in hospitals, but that guaran-dang-teed i would not be sleeping. 

Every day they said, 'We'll let you out tomorrow.', but tomorrow they said the same thing. I was having seizures, but to my knowledge none of them were particularly prolonged or severe. (This is not to suggest they weren't still pushing lorazepam or whater by the tranquilizer gun-full.)

Oh, and less-than-titillating, but, i feel it important to mention - I've never gone all the way off one of the pharmaceutical drugs (lamotrigine), but i was on a lower end of the 'therapeutic range' deemed effective for seizures. (There was a study released this year that validated my experience - 'The best response to AEDs used in monotherapy was observed at low dosage.' (This study was specific to refractory epilepsy.) Boom. Case in point.

My lamotrigine level was found to be normal. Turns out it  actually worked against me, I later found out from my rockstar nurse/friend mentioned previously, in making the decision to fly me Spokane. Which is to say, if the levels were low, they could cite that as the cause of the seizures. Presumably, they could have kept me there and worked on getting the lamotrigine up instead of opting right away for the ol' heave ho.

Anyshnitzel, back to the Neuro floor, (is that capitalized i dunno - Hell is, so we'll go with it.) It's pretty fuzzy - wish i remembered more. I don't remember any of the food aside from ordering coffee one morning and wondering if i'd be allowed to have it. (They brought it, and whatever the coffee-like substance, it was better than some tepid, brown,  stomach-stripping agents sold at some gas stations.) I was very grateful for it.

My sister was able to bring Olive in during the day. Tami, my sister's wife, brought me a small fan. Oh, land, and they brought me my cell phone. (I need standing orders for them to prohibit access to any and all technology while in hospital custody.) I was texting people at o'-dark thirty - nonsensical gibberish, calling in to work (Hay-suess Crisco). Thank goodness I am not a shopper. 

(Again, I digress...) May have already told this story, but one time I was stuck in our local ICU for something upwards of a week and tethered to a hospital bed. Again the details were/are few-and-far-between. That time, someone thought it would be a good idea to bring me my laptop. I remember begging the hospitalist to let me out of bed. I will crawl, I pleaded, inch my way like a caterpillar, human-egg roll around, *anything* outside the confines of the head, foot and siderails. (No dice.) I recall feeling desperate about that. It was two or three weeks after my release, I found hospital floor plans downloaded onto my computer. Where do you even find something like that on the internet, guys? All I can surmise is a escape plan was being formulated somewhere inside my snowy, snowy, stir-crazy brain...

Anyway, the Sacred Heart neuro floor 
was hot and even noisier than most hospitals. I could hear kids. At times it sounded like a slumber party and foot races in the hallway. Or maybe I was simply delirious dreaming the sounds of them.

I don't think i remember any of the seizures i had during the day. I know my tongue and mouth were pretty thrashed. Freaking sharp, aching, constant oral pain.
 I'd have gladly done myself in with a massive overdose of benzocaine.

Ah, shoots, did I even make any progress here? I got carried away away on the tangent train. (to be cont'd)

Here's some more pictures of our recent smoke-enhanced sunsets: 


Just down the road from work

And the obligatory Olive photo






Have a sweet, sweet day,

Alli