Music's Like a Snuggie for Your Soul

MUSIC'S LIKE A SNUGGIE FOR YOUR SOUL

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 up in Spokane. She accompanied me to an appointment with my primary care doctor the next day. 

It's an hour and a half home from the hospital 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 with us in Moscow. I didn't have a very good night; I don't remember boo about it, but I didn't get dragged into the hospital either, 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)... 


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've Been Intending to Write





[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 and asserted he would go on any adventure anywhere with me. (And he's legit. And seen me full-on gong show too!) 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 being. It feels a duplicitous battle between me and the rogue, traitorous, right side of my body, my left hand grasping tightly to its counterpart in a futile attempt to resist 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. Last night i found myself waging that fight on my knees, shuffling around, unsuccessfully trying to find my feet or something steady short of the asphalt beneath me where'd i'd wound up 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 one 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 flinging 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

Monday, August 21, 2017

HaBanot Nechama - Ever



    ...or am I losing it all?

Bewildered, bewildered, you have no complaint... (pt 1)

Photo credit: Pinterest

So, it's been a month since finding myself back aboard the U.S.S. Shitshow (not quite schmegshow status, so that's something). A post has been whirling about in regard to the whole ordeal, but large gaps exist and my best research and extensive inquiries have been less-than illuminating. Forgive my missing (and/or broken) pieces.

As usual, my recollection of the up-to is mostly intact. It was early morning (3-4 a.m. Sunday July 16th). I used to have seizures at night, but it's been a number of years since I was aware of any. I woke up and Olive was freaking out. Not sure, still, if I was coming out of a seizure or stuck, to some extent, in a partial one; I couldn't adequately search for a rescue vape generally kept on hand. (It was buried in a bag from a recent trip. I'd grown complacent. My last seizure was in March, and generally I've been going 8-9 months, so I suppose I was banking on a few more...)

Having taken an inordinate amount of time to execute an unanswered phone call to my nextest of kin, my panic-addled and exasperated lizard brain decided to walk the two short blocks to the hospital. Though not my druthers, years ago, I'd wound up there in a similar situation. After a quick blast of Ativan and maybe some recovery time, I'd been released back into the world on my own recognizance and all was fine again.

I made it to the very adjacent cross street, but never managed to close the distance between me and the presumed brick-and-mortar source of assistance. That was the last I remember until waking up in the ICU Wednesday. It sounds like a cop found me? In any case, the ambulance was dispatched. One of my friends who was on the call said there was so much blood on my face, she didn't recognize me until she saw my tattoo. They pushed IM Versed/midazolam on scene, I gather, but from the sound of it, it wasn't one continuous seizure, just subsequent ones without full recovery in between.

I don't remember a second at our local hospital. Apparently, I was Life-fucking-Flighted to fucking Spokane. (Not one glimmer of recollection of the helicopter ride, sadly.) My slate is totally, utterly wiped until finding myself in the purple-walled Neuro ICU at Sacred Heart in the same piss-soaked shorts (with a hospital-issued gown over top) that I'd left the house in 3-4 days ago.

Thus begins the first part of my latest saga that I'll attempt to relate to you in its entirety, to the best of my abilities, here in the next few days.

Sorry, as always, for the me-centric posting. It's regretful, but I hope if anyone out there is going through any similar experience and feeling bewildered and isolated, maybe they can know they're not alone, and that will be something.

<3 Me, Wildered

Sunday, August 20, 2017

Dear Seizure Diary...

Photo credit; ToysRus®

Dear Seizure Diary,

Go fuck yourself.

Not yours, truly,

Allison

It's a great idea, and an important tool in keeping track of blasted seizure things, but I haven't kept one in years. It seems a full admission, acknowledgement of the whole situation (which I still suck at, though you all have helped me, unquestionably, in that regard). Plus, when it happens, it tends to be enough of a disruption (despite the relatively short duration), that you imagine you'd never forget much of anything about it.. 

Hoping to post more soon, but my brain has been swimming the last few weeks. Apologies for resurfacing when things are shitty. I probably need more counseling, but there don't seem to be a lot of other avenues for relating this ish outside the closed doors of a frumpy sham of a room. It seems there aren't many that can relate or have much understanding. I appreciate you all heaps and regret my absence. (The work/life balance is still eludes me much of the time.) 

Much love and kindest regards,


Me




Tuesday, April 5, 2016

Wednesday Eve Moment of Zen

This was a quick evening kayak excursion after work last week. (Sorry, i don't have a mount for the camera so i was just holding it in one hand and hand-paddling with the other. And i don't know why the audio is absent at the beginning and comes in at the end, and same with the slow motion, but whatevs.) I'm pretty sure things are going to be okay. 


It's a little over two months right now to get in to see the PA to have the VNS device checked. I probably could express greater urgency, but meh. I have these perfect, flat magnets i can use to turn the motherfucker off in the event i feel like my heart is going whacky and i need to eliminate that as the reason. 

I kayaked and played hockey and while i'm still wicked tired all the time, i didn't drop dead of a coronary event or anything. 

My April fool's weekend was another delicious couple of days on the Lochsa along the Selway-Bitteroot Wilderness and even still, i feel taut as a drum in my chest. I'm surrounded by golden, crepuscular bursts of radiant spring light, new leaves, vibrant hues, emerging victorious blossoms, hope, fresh growth, rain kisses sparkling on clean earth, exuberant bird songs, reviving rivers, and a million other omens of yes! ... yet, i'm a shrew. Uneasy. Keeping my bumbershoot open, not so much for the spring rains as for the seemingly ever-imminent, god-forsaken, other shoe.

Right now i don't know if it will be a family member, something global, a big seizure, something stupid with cannabis legislation or my own vulnerable cannabis-dependent situation, or what, but i have an awful sense of foreboding. It will be okay, ultimately. It will be okay; i still feel that to be true, but what's impending that has me so edgy i wonder? Maybe i'm high (likely), but i don't normally feel like this. I'm pretty sure. That i can remember. Well, maybe i am 'Always-Something-Allison'. Shoot me now. Gah. Don't. Sheesh. 

Love you. 

Night. 

Everything's going to be alright. Eventually. I promise us.

Saturday, March 26, 2016

Spring Sprang Sprung




 

It was a beautiful weekend. We rang in the first day of the season in vibrant, springish, dare-i-say glorious fashion. I love my boys.

And then, of course, there was kayaking. I'm hoping to whip up a post about additional safety measures to allay some of the risks for seizure-having kids and people like me partaking in sports like kayaking. But later. For now, just know they exist (and are undergoing continual development). 

It's runnin' at a friendly level, and it's a 'pool-and-drop' river, so after the rapids there's a nice calm pool to regroup and collect any swimmers, boats or gear. By our best accounts and figures, 3 or 4 minutes' warning should be adequate on this stretch to find a spot to stop on shore, or at the very least eddy out and hope for the best... (My guys are the best is what is boils down to, not to mention my buddy Marissa who joined on day two and kicked ass on her first Lochsa lap ever!)




Behind that awesome clump of cedars was my
very favorite pee spot of the weekend.














How rejuvenating right?! You could almost cure a venereal disease just looking at that emerald green water. 

Well, despite the auspicious beginning, i had about three more posts i'd hoped to get to, ('Fun at the Idaho Caucus', for one), was supposed to play three hockey games last night in our end-of-the-season tourney, then venture out afterwards to catch up with my good friends visiting all the way from Corvallis. But instead my plans have been supplanted with feeling like dogshit. I'm dragging ass, even though by my recollection i've been sleeping and doing everything else as usual. 

I went to donate blood, (It's been scheduled for months, and i need all the easy karma i can get.) and even though i forgot to eat my cream-of-wheat, my iron was good. So i was stoked. Then of all damn things, i was deferred because my pulse was too high. I'm not at my peak swimming fitness, i'll admit, but my pulse was over 200. Ten minutes later, despite my best attempt to deep breathe and open a six pack of calm, it was higher. (How i hadn't noticed my heart was racing sooner, i haven't a clue.) In the days since, it's lower three out of four times i checked but still zooming intermittently. (Not quit my normal baseline, but 'WNL'. My pulse is usually mid 50's while marinating in the hospital setting.)  

Is it the VNS? The maude reports are full of weird cardiac problems and events. Maybe the battery is starting to shit the bed? I don't really want to go all the way to Spokanistan to be told i'm being a ninny though if it really isn't anything. I'm in between GP's right now as mine has gone off to specialize in bariatric patients exclusively. She's fabulous. I'm ready to gain a hundred pounds just so i can see her again.

Anyhow, that's a pretty shitty ending to what started as a niceish post. A roller coaster week for lack of a more inspired analogy. When the hockey schedule was posted i'd hoped to sneak a morning lap on our local river before our first game today, but i'm going to re-up on NSAIDs and go back to sleep instead. Little crab fork headaches, nothing compared to the kind post seizure, have accompanied this weird, unprecedented malaise. And does 'nothing grows in anger' apply to everything except seizures? Or do i feel angry on account they are imminent? Even small ones that may or may not have definitely not happened this week...foof.