Music's Like a Snuggie for Your Soul

MUSIC'S LIKE A SNUGGIE FOR YOUR SOUL

Friday, February 23, 2018

And 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 fucked up this time. I feel like a dumbass. Too embarrassed to tell anyone outside my family yet, really.

I broke my fucking 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, as per usual.) 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 nonsense. Somehow 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? 

Fuck, 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 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 sitting and answering my inquiries once the movie ended - more 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 for them. (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(and i wasn't doing anything fast at the time, believe me) I passed right out.  (Still do sometimes - Dr. is well-aware, but doesn't seem so concerned as i am. Oh, and 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 and were pretty chill about it, 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, i guess, 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 guess I said, "Hi [manager's name here], i like your voicemail greeting. Bye." <click> Not even relating a shred as to the intended purpose of my call. Lord knows what i liked about her voicemail recording.

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. Oh, and my plant ID ninja skills realized our blunder before the filling hit the shell, and we even had enough time to make another batch before the party.

(There's me digressing again.) The entire town was a construction zone this past August. That's 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, ol' doggo made clear to me that it was high time to leave, or i'd be creating a scene. With her rate of walking, these days, odds were a snow cone in Hades we'd make it in time. I abandoned her and started booking it 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 timber!ed. 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, rather than via interaction with others. I was dejected. Thankfully, it occurred to me, 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 them a bit (the helmet, that is).

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 the repercussions have proven persistent and unsettling. 

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 only remember 3 specific details from the trip: my sister was driving, my clothes and schlonk were bundled up in a teal hospital belonging bag, and our mom wasn't with us. I have no idea where she went or when she arrived back on scene. I didn't have a great night; I don't remember boo about it, but I didn't get dragged into the hospital either, i know, so not a total disaster.

I was a little zonked out, but a bit less on the swerve by my appointment time the next day. I remember most of our 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. Needless to say, I was not to be trusted to my own devices (per my mother, et al.) for a good long while following that consult. 

I regret bringing things to light that are anything but, yet, nevertheless, i'm compelled to share this screenshot of the beautiful mother to four, sister, daughter, friend (of mutual friends even)... 


Not sure if you can read it, but I'm grateful her family acknowledged epilepsy as the culprit. (Though there's nothing little about it, I wish people would stop capitalizing that shit. Fuck epilepsy. There is nothing proper about that noun.) Photos of her with her kids on her facebook page are gut wrenching to take in. My heart. *Those little hearts.*

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.

Monday, November 20, 2017

Neither of the Posts I Intended on Writing





[Last night ~ 11ish - sleep arrived sooner than the end of this post...]

We'll see how this goes. I'm twitchy as right now and i'm cooking on the stove, but i'm also not perfectly sober so therein lies some of my problem. (3 pints of craft beer to be exact.) I do drink eeeevery once in a while, but hardly ever more than one beer and almost never wine or anything stronger.

I went out tonight. For better and worse! Ha. It was great reconnecting with a few folks from work. There's been some serious drama on that front since i left, which i'd caught wind of, so it was wonderful and reassuring to be able to check in with them and the rest of the gang.

One of my former co-workers is one of the few at the company that could be regarded as an actual boater, and maybe the only person there with more guiding and river experience than i have. (Not to brag, but a fact is a fact, and i've been extremely blessed, against a pesky odd or two.) He's been my commanding officer in the war zone of outdoor retail/customer service, and he can be very reserved. (To the point, at times i've been certain he hated me.) The fact i have seizures came up in conversation tonight and i took the opportunity to reiterate to them (they're kayaking/snowboarding buddies, also) that my top priority is always, always safety, so never be reluctant for a second to voice any of those concerns insofar as extra precautions and considerations and whatnot. My aforementioned former colleague turned to me and asserted he would go on any adventure anywhere with me. (And he's legit. And we'll just say he's all-too-aware of the seizure situation.) He even went on to say he didn't ever worry much about it. God, that meant a lot to hear from him. Totally made my night, even though it didn't exactly end how i hoped.

I just took a cooking intermission and survived a bunch of vegetable chopping - totally good now. I vaped when i first got home, but i was still a little wonky and kind of amped. I since revisited it and found it was clogged, so I probably just didn't get a good enough rip the first time around. I'm tending to a cauldron of curry. I want to be brave and bring some to my crush of 5 years (ha!) but in all likelihood most will be going to a friend or two mired in end-of-semester finals. It's a vegan curry. Currently a vat of vegetables and broth. I add cashew nuts and coconut milk, but it has to be one of the most nourishing meals on the planet. Curcumin and bioflavinoids, right? I've adapted a few different recipes and have been busting it out every so often for more than a decade now. I can't wait to eat some. 

I almost made it all the way home from drinks, but it was a great night! so my exit was a bit less than expedient. I didn't have a full-blown seizure, but i had to bail from my bike a couple of blocks short of my house. I don't remember deciding to get off, or ceasing and desisting my normal pattern of walking in an upright, pendulous fashion, but apparently (and in no matter of time) somebody noticed.  I didn't lose awareness, but i just don't exactly remember. My most subtle episodes (episodes - tune in next week for another enthralling soap opera episode of 'As the World Turns Upside-down'!) [Update, not last night anymore and I did have the good sense and wherewithal to turn the stove off before I passed out. Thankfully.]

Um, (and this writing wasn't so bad as i feared eh?) so, for lack of a better word, episode - mine can be darn near imperceptible, where one hand and part of my face twitch. We can be in the same room, and unless you're staring at me, you probably wouldn't notice. (Or maybe people do, but they don't acknowledge it? My homies generally don't let me get away with much, though.) There's at least a train station or two between the mildest and the most extreme seizures I'm one to have. The next stops I lose my speech, my head turns, and i lose motor control of the better part of half my body. It feels a duplicitous battle between me and the rogue, traitorous, right side of my self, my left hand grasping tightly to its counterpart in a futile attempt to rein in the abrupt movements. My right arm nudges the air out in front of me, almost jocularly, time and again. Hey space, wanna hear a joke?... Hey space, wanna hear a joke? Hey space, wanna hear a joke?... This is accompanied by the jerking of my head up and to the right and tugging at every corner on the left side of my face as if by some invisible phantasm. Last night i was waging that fight on my knees, shuffling around, unsuccessfully trying to find my feet or something steady, short of the asphalt beneath me, making a scene, apparently, in a small parking lot. I'm pitched forward, towards the ground intermittently, but I'm still able to guard my face with my arms despite their preoccupation warring against the another.

Duder comes by, I think he'd called for help before even approaching me. He was medically trained he said. (A medical scribe? Whatever that is?) Very much nice enough for sure. Before too long at all, I can speak to him mostly intelligibly. Nonetheless the brigade had already been dispatched. Surprisingly I only knew one of the coppers and one of the EMT's. One of the fire guys knew Olive's name, which was really sweet, but I didn't recognize him. I very effing nearly got loaded in when I got dragged back into another, thankfully brief, and thankfully partial, seizure. I was still totally aware when they sidled up next to me with the gurney, but thankfully i bought enough time sinking my weight down to my knees and impishly, 'hell naw'-ing my ass away from that thing and stalling long enough to slow their roll. As soon as it relented i dove for my phone in my bag and got a hold of my sister who swooped in like a BAMFalicious super hero and saved me. Everyone was rad, let me sign the paper, and I got to go home. 

Made some curry.

The end. 

Te amos yalls. 

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/neurologist I remember that week, (save for a flash of a dark-complected, black-haired, female), was younger than most of the Neurosaurs, but, nonetheless, a dork-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. He's fine with foods contaminated with residual Roundup and 2,4-D - both correlated with non-Hodgkins Lymphoma, endocrine disruption, and Lord knows what else? I'd rather eat straight bug poop out of a squeeze tube, but whatever dude. Can't say it really tallies up many points on the credibility front, but again, whatevs.

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? So, they were bleeping meatus heads 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, of course, in the matter of one or two days, they ramped up those meds. One, that i'd been on, was doubled, and the second (Vimpat/lacosamide), went from zero to the highest recommended dose, not to mention the fact i was still being thoroughly and utterly benzofied. Holy bleepidy bleep, Batman. The hospital room was orbiting around me so fast, if i had spurs on, they would've sparked and sparkled like wheeling, incandescent, Fourth of July fountains.


Sunset breaking through Labor Day haze

Both of the drugs give me insomnia for a few weeks 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 did nothing to mask or quash the spinning or the nausea, they just added different layers and condiments 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 a bit traumatic.

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 and my face on the 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 strugglesome. 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 morning. 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 some 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, dudes. 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 god-forsaken degrees, at least. Granted nobody sleeps in hospitals, but that guaran-blooping-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, sure, 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 that I omitted previously - 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 my ass to 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 work 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 hole 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-colored, caffeinated, 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, god, 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 shackled (figuratively) 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, back to it, it 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. I do sympathize - eff being a kid on a Neuro floor. (I wasn't a kid, kid when i started this epilepsy awareness gig.) But the only games that should be played indoors at night, in my opinion, are quiet giraffe and who can hold their breath the longest. 

I don't think i remember any of the seizures i had during the day. I know the side of my tongue was pretty thrashed. Same side generally, or sometimes both. And forgive the silly details - while it may be, i don't mean to be making an appeal for sympathy. It's one of limited recollections I know to be true of the whole ordeal. Another example of how the this shit can be such a vicious cycle - wrecked tongue, for some reason, (for me), comes with a sharp, aching, constant pain rather than the throbbing variety, or yelling ortho pain. It 
wakes me up constantly throughout the night. (Less sleep >> more seizures, the shitcycle continues...) Plus, your tongue becomes swollen and you increase the chance of biting it. If you could overdose on benzocaine, i would have done myself in already. 

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

Sunday, August 27, 2017

Taking a Trump

Will get to the concluding posts of my strange and bewildering odyssey, (but fluff posts are so much funner!)

Do you think i'll make tens of dollars with my bumper sticker idea? Seems like there's no way somebody hasn't come up with something similar already, but God knows how difficult it can be stomaching an extensive internet search with the related terms. (There are some pretty funny anti-Trump ones out there, but you have to slog through a bunch of pro-Trump dog plops to find them.) Have you seen any like this around? (I don't really drive.)



Do as you will, loves, but hoping, in any case, it involves having a beautiful and rejuvenating Sunday and taking great care of your remarkable selves.

Exes and ohs,

Als

Saturday, August 26, 2017

Salt Mine Saturday

Oh mans, it's a rare weekend shift i get to pull today. God they're awful. We're short-staffed and for some reason, the crazies and shit bags seem to float to the surface on weekends. (Gah, all i've done is complain here as of late. Great success.) 

One funny/terrible thing that happened this week working in the returns and warranties department involved one of our newest employees, and, naturally, myself. She came out to our returns area which is just outside the call center/sales floor, in the adjoining warehouse.

We sell inflatable SUP boards. There are teensie, tiny, little bumps that sometimes appear in the material where you fold the board. They're absolutely, purely cosmetic and barely perceptible, at that. Like goose bumps on a new born baby. Like braille...

Well, this newer employee was fielding the question as to whether the customer should be concerned about said bumps. I responded quickly with, "Those are the braille instructions for how to get back on, when you fall off your board."

Now here I thought it was infinitely obvious i was being facetious. Lord help me if she did not forward that response on to the customer. Oh bang myself in the forehead with my open palm, any open hand for that matter. Suffice it to say, the customer was none-too-pleased with our response. 

And of course she was! It wasn't even limited to jocular, it was insensitive. (Although, it wouldn't surprise me in the least if there are a number of blind SUP'ers out there.) Have you all read No Barriers by Erik Weihenmayer? He's the Everest climber who's also killing it in the whitewater kayaking realm. Blows my mind! The book might be available in your local Overdrive library. (One of my favorite things my mom told me about last year. Thanks Mom!) Do you guys know about Overdrive? See if you have it in your area, all you need is a library card to access all sorts of audio and e-books. You can even download them onto whatever, whatever device and listen even if you're out in the toolies without any G's or what have you.

So, my point is, I regret the joke for more than one reason. I can't assert if somebody razzed me similarly about the foam deck being beneficial for SUP'ers with seizures or something, that I would always take it in good humor. 

I'm a sarcastic asshole. Drat. (But it was pretty funny.) 

Wishing for rain here too. If only we could have prayed it our way and spared Texas some of the devastation. (Spent many a spring break in Corpus Christi with my step-dad's family.) What a mess, and more rain to come. 

Here are two songs about wishing for rain (just not for Texas), I enjoy:

Not a huge country fan, but i was raised on Nancy Griffith...


And who can forget the Temptations?


Peace and Love by the bushelton,

Ajax






Wednesday, August 23, 2017

Bewildered (Part Dos)

Yes, I've been less-than-happy waking up with a catheter of the non-IV variety. (You can't win with me.) But, while invasive, and certainly not my preference over 'neither of the above', (oh, see the end of Bewildered pt. 1), it doesn't suggest negligence . I did a stint at this hospital a couple of years ago. I intended to post about it, but it was sort of traumatic and I swore to myself, I was never going back. 

Pardon while I hold the phone for a moment here and hip skizzle to a couple of points I could've/should've included earlier. Was there a precipitating event? Not really. Part of me wishes I'd smoked an ounce of meth or something so as to have something greater to implicate. My best guess is that I'd reduced my CBD/cannabis intake slightly for financial reasons several weeks prior. It seemed a fairly trivial amount, but fat soluble substances could take that long to fluctuate significantly, theoretically (?)...

Also, there's my new boat. I did get her out on the water a time or two before the rug was pulled, but gah. I need to come up with a better name because Jinxie is in my head, and what a terrible name for a water craft. Isn't she pretty? (Never mind the fennel sprig in the back.)



It's all a bit unnerving. I wake up in the Neuro ICU and I'm tethered to the EEG machine. The one at this hospital, as I've experienced before, has about a 2 foot lead (and I may be being generous here). This day and age there are ambulatory EEGs. This shit should be Wi-Fi. At the very least, couldn't they spare an extra length of bleeping wire?! I don't much care to watch the video, but I'm curious how all the electrodes aren't pulled off when you do have a seizure. Maybe they can wheel the machine around whichever way you tend to go? Who gives, I guess? I dunno. 

Oh, and apparently my family, (grandma, uncle and cousin [2 cousins?] came to visit on, what I hear, was more than one occasion. (My grandma lives in Post Falls, just over the Idaho border from Spokane.) Egad. My kind, fun-loving, gorgeous aunt would've been there, but we lost her this year to the shit fuck talons of breast cancer. Not long before, my grandfather died unexpectedly. A month or so prior to that, my river mentor had a fairly catastrophic stroke. Additionally, recently I went to our HR guy (a CPA) and dropped the mic. (Might elaborate on the full story...) We went toe-to-toe for one or two hours wherein, he talked me into staying. So, speaking of triggers.

If I'd been solely operating on what my brain knows to be true, and you told me my family had visited and I'd been on a helicopter ride, I'd vehemently deny it. To the extent I would fight you. (JK, but verbally for sure.) Plus, what's even more unsettling, is I'm not even out, out much of the time. I'm still interacting with the world, blackout drunk, snowed on benzos. Maybe punchy at the time (?), but I don't have any positive or euphoric connotations with any of those drugs.

You aren't permitted to leave the confines of the bed, much less sit up comfortably. You have to carry out all matters of toileting in a bed pan. You don't even have enough lead in the wires for grabbing your knees, rocking back and forth and weeping softly. 

And what the fetch are they even testing for? Were they not entirely convinced of said seizure activity? I'd already been through the gamut of testing at this very institution only to be ruled out for a second time as a surgical candidate. But, yes, lo and behold, this time, as with the last, there was documented evidence that my tongue-biting, pants wetting, and general thrashing about was indeed attributable to electrical abnormalities in my brain. 

So, I had a few seizures up in the purple-walled unit. At some point they finally gave me a bag for my shorts and liberated me from the vexatious tether and tentacles and ever-present eyes of the EEG machine. The seizures were only 2-3 minutes and relatively far between, so finally they moved me out of the ICU and down (up?) to the Neuro floor. 

It was the 8th or 9th story. The view was great, but day and night the room was about 85 degrees (29.4 C). It was miserable. The nurses were all, 'Oh, yeah, it's like this.' (WTF?) Don't know about you all, but my optimal sleeping temperature is well below 85 degrees. Thank God for that soft, delectable ice one nurse would retrieve for me by the mini pitcher. 

So concludes my second installation of wtf-ery. Thanks for making it through my not-so-succinct self-centric blubbering.

Mucho appreciado y amor.

Signed,

Bewildered