Tag Archives: hospital

Healing: just another hospital visit, annotations

9AM Get out of bed Dave, get out of bed Dave, get out of bed Dave. You’ve got to go to the hospital Dave. Put on clothes Dave, take your medicine Dave, get on the bus Dave. Make sure you’re wearing pants Dave. Oh my goodness, have to decide what shoes to wear Dave.

Yep, just waiting for the bus as usual

10AM OK, I did it… Up, medicines, beard oil’d, snappy outfit-ish, shotgun coffee and out the door just in time and experienced all four of Japan’s seasons within the four minute walk from home to the bus stop.

Felt a little bit more springtime when I first looked out the window

{They taught me well at the school for “worlds worst secret agents”}

All of the seasons, all at once: Grey rainclouds, bright sunshine, crispy windiness all at the same time (on rather warm stuffy bus)

11AM Rocking to Belly (the band)’s “Dove” en route to Okayama University Hospital 岡山大学病院 / usual as only this & Bob Dylan’s basement bootleg are in the basc “music” app for past years (i have stashes in Bandcamp & Relisten)

Along with Belly, I’m a huge fan of Tanya Donelly’s solo EP series “Swan Song” and am partial to her songs in Throwing Muses

PS Also have signed #vinyl

11:30AM This is a “foursquare check-in” from Okayama University Hospital. I think I’m the mayor by now :)

Injections impending / 1st of 8ish checkpoints

12AM Update: nurses love my spring blossom vibe tie

{Many things happened}

My tactic with communicating with hospital doctors is taking a printed memo in both English & Japanese (i use machine assisted translation) as most doctors studied medical terminology in “English or whatever” and having something they can read rather than listen is a huge help

{in preparation, February 8, 2024}

2:45PM At least eight hospital checkpoints completed – both medical and administrative – Plus pharmacy (with all the QR codes and special booklets) and now my secret Kissaten was closed but reopened to serve me this glorious lunch with flowers on the table & 3 beverages.

¥950 + ¥400 for royal milk tea
Continue reading Healing: just another hospital visit, annotations

Healing: oxygen, blood cells, coffee & matching outfits (future acts)

{Unnecessary preamble} Coffee, croissant and ukulele outside for a little bit under the pleasant cloudy skies. Yes, I am Cascadia chap. Happy to be cooling off after so hawt hoomid summer in Japan. Regrouping after hospital visit & recalibrating for the months ahead.

PS (smilin on the inside)

So, before I forget it all, let’s recap the Hospital day… Start from the morning:

OK Dave, get up, vitamins, more coffee, porridge, clothes, packet of papers, wallet and watch and off to hospital with you. Don’t forget your memo! Going to be a long day but you’re gonna get through it.

Made it through the first couple checkpoints, just ate some lunch and heading to wait for Dr number three… but let’s back it up:

Kind of Jack Kerouac vibes for the lunch with a club sandwich, apple pie and coffee in a quiet corner

TCM/Kanpo: First doctor is the traditional Chinese medicine Doctor who checks my pulses and tongue very carefully. Explain that my pulse is quite strong despite me feeling incredibly weak, tired, spun out etc. which is indicative of my body “trying” – but he explained to me very carefully that I have to ‘Shut it down and rest’ for several months. He went on to say that at their clinic, they deal with MECFS and long Covid patients consistently and somebodys aren’t really “pushing back” and I am but need to give time. I asked him about putting on my usual Christmas party and he says “if you can make it very simple then OK…” (Above done in Japanese but you get the point).

He also inspects my abdomen with palpitations (is that the right word?) which is generally a weak point for my wonderful delicate body with a colorful history from Giardia to appendectomies and many points in between, and again, was pleased to see strength and function in this region.

He re-upped my “usual retinue” of powdered traditional Chinese medicine packets – four kinds are used at different times of the day and two more to be used situationally (for times of excess tension and headaches).

Made sure to thank him again for taking the time to truly inspect me, adjust medications and treat me with dignity and respect.

Inputs: Next was heading up to hematology or something department where I get a comically huge syringe with a cocktail of medicines and vitamins injected into the reliable vein in the crook of my left elbow. Laughed with the nurse that her lavender latex gloves matched my shirt and then I showed her my also matching socks so we had a chuckle part 2.

Little things like this make the day go so much easier. All of the staff are incredibly precise with their routines – double checking my name, birthdate, allergies to alcohol and latex etc. even though I am well, very easy to spot and remember in the hospital. I joked that next time I visit the hospital, let’s do the light blue gloves and I’ll wear the outfit to match.

Logistics: I should mention about the check-in process which my darling wife used to assist me with as it’s done with a special card into a special machine which prints out a special paper with special numbers that break down your itineraries for the day, but like a trooper, I completed the task on my own with only mild bewilderment.

In this case, started with three checkpoints which turned into six as the doctors adjust on-the-fly when other treatments can be added (in this case the blood panel, oxygen and blood panel review).

And, to make best use of their time and to have a permanent record and, to assist the diligent clusters of medical students observing, patrolling, and learning, I always take a memo of current situation and my questions. In this case, because of the recent COVID-19 infection and feeling incredibly depleted and a bit scared through it all, I had a few specific questions & paths of inquiry.

The doctors pay close attention to this notes and are rather appreciative rather than annoyed. (Folks who have experienced medical care in some certain countries will really grok the goodness as some doctors take offense to the patient – you know, you – actually asking questions and wanting to participate in the medical care. /rant

[brain imaging: Interrupting myself to remind to better explain the brain imaging scans from previous visit as there was some inquiries… I’m not all that clever except to say that it showed a lack of blood flow to the front of my brain (frontal cortex or whatever which controls executive function), I’m not sure whether it was an MRI or a CT or something else because it didn’t make those horrible noises, yes there was an injection to show contrast in the scan but I don’t know what the magic potion was.

The results were delivered to an app on my phone [as are all my other test results and all the information about upcoming appointments and so on. Also, payments/insurance information is somehow contained within this app. The app is all in Japanese and my reading and writing skills are well, underwhelming and there’s no onboard translation scheme so I just kind of muddle through / onwards!]

Outputs: Dr. 3 also becomes checkpoint 5 after going to back to floor 2 – but this time to the “output blood” department rather than the “input” department mentioned earlier for checkpoint 4, for 6 blood vial draws // nurse was incredibly skilled switching vials one-handed while holding the spike in with the other hand. Precise, confident and swift – and again, double checked name, birthdate, allergies…

and now some kind of oxygen “something something don’t quite understand yet” which will be checkpoint 5 #whew you with me? Let’s take a break.

{this ^^ dispatch is coming from a quiet corner with unscheduled brewed coffee vending break // these machines always remind me of some 70s cop show when the hard boil detective is waiting out a late night shift at the morgue drinking Styrofoam cup coffee… Yes I have that active of an imagination

Oxygen / briefly: Explained the “new/different kind” of headaches I’m experiencing to Doctor who suggested could be “cluster headaches” (unsurprisingly, i experience a whole smorgasbord of headache types) so tried 15 minutes of oxygen – was huge relief and pleasing moments of calm. Want more and will explore getting oxygen for home use. {This was not like a “CPAP” just a simple oxygen mask on my face while chilling on the bed with handy eyemask.}

Stats: After oxygen, the blood test results were already analyzed and delivered so back to the Doctor 3 (infectious disease specialist) who reviewed several of the critical things we were looking for, specifically about white blood cell count (which was above range which in my case is a good sign as it shows my body is diligently fighting the viruses as often times, the white blood cells will just “give up” with an over-clocked immune system (pardon my lack of technical medical language here).

Also checked thyroid function which was all within range (four different levels) and cortisol (also within range). Checks for Epstein-Barr virus were not instantaneous but two pages of results delivered and under an hour // of course all in Japanese and not all of it is easy to colloquially translate yet somehow, felt pretty good about it all. Oh yeah, my cholesterol is ridiculously high which it always has been even when I was a skinny active vegetarian (I am none of these things now). #shrug

Translation: {If someone is really eager to try J>E translating medical terms, I don’t mind sharing this highly personal information publicly because like, “what’s gonna happen? I get more information?” And no, machine translation isn’t necessarily a great fit for this kind of project.}

Art: By the way, there are several restaurants in the hospital i hit up. The other day, while enjoying a club sandwich, apple pie and coffee, noticed some great framed albums / also rotating art exhibit on the wall. Yes this is at a hospital.

Winding down: my usual routine after the checkpoints is to roll by the payment desk and show my app (if you’re curious about Japanese national medical insurance, basically, a significant percentage is covered by the plan and depending on your income situation, you pay some kind of “co-pay” (for lack of a better word) but the amount honestly is some times rather just nominal like a few dollars equivalent).

Anyway, the magical app is connected to a bank account or credit card or something and I just sort of stumble up to the desk, show the paper dispensed from the robot at the beginning of the whole visit and show my app and do my best to smile through my mask because at this point I’m completely deliriously exhausted.

In this case, was there from 10:30 till about 16:00 – sure a long day by my standards but incredibly efficient considering everything done. {In previous countries in which I received medical care, this would’ve been many days worth of appointments scattered at different clinics, labs and hospitals so I am Very grateful}.

Anyhow, then go to the pharmacy where they scan the super-dense QR codes on the prescription sheets given by the doctors and in the past, I would tote the bags home in the van with darling wife but now that I’m rolling solo, instead they courier the medicines over a couple days later after doing a video call to review any changes. The pharmacist realize that I’m not really capable – basically nonverbal – when I drop off the ‘scrips so they wait till the next day to call.

For example: for some medications which I am trying out, they will not package in the little packets in case the med not a good fit for me so I can put it aside. Does that make sense? Anyway they double check everything via video call and then on another app, push a button and payment done. Again, some percentage paid by us, the majority paid by national insurance scheme.

Afterwards, I usually go to “Liberal” kissaten for a quiet meal/coffee, look at books or sometimes scribble postcards but by the time I finished this time, they were closed so instead walked over to an embedded convenience konbini store – as it was so late in the day, darling wife was picking up adorable son from school and they swung by and grabbed me saving me the close to rush hour bus ride (which may have been the factor for previous infection anyway).

This is where I sat and waited for pick up. Since I had a photo of it, I put it here. This is the front of the hospital where the taxis and buses roll through.

I bought them some snacks at the konbini so we rolled home together eating onigiri and egg salad sandwiches with the crusts cut off with my favorite duo.

Not a doctor, duh: Realizing above doesn’t give too much heavy duty medical jibber jabber but maybe I’ll get courageous and productive enough to share the blood test levels… I don’t know, is that a good idea? And hopefully the info about oxygen is informative to other patients and the whole daily routine is of some interest and usefulness.

Please remind me to go slow for several months.

Bonus: so much research, conversation and awareness about this ridic illness so a couple dispatches stashed here so I can find again. Dig if you’re curious:

Oh my goodness, this is all about me ^^

Addendum / dreams:

Next day: Well, folded a bit of laundry, changed the sheets and pillowcases, made tea. And now back in bed.

“Tiny steps” and rest are the requirements but my goodness, I want to write a novel, record an album, send 100s of postcards, and make a video of doing all of the above.

And yes, should not be sharing any of this but honestly, i’m increasingly mentally fragile, exhausted, bewildered, frustrated but still somehow so grateful “this version of my life” found me and convinced i still have a 4th, 5th, 6th “act” in me. F. Scott Fitzgerald was wrong.

Keeping it together my friends, a topsy-turvy stretch but I am still moving forward and letting myself dream big, ergo:

I am always writing “something” – lyrics, freeverse, diaries, shaking out the negative thoughts into slightly vindictive words (yes yes i know), usually in notebooks but sometimes in apps or files i forget, sometimes print & put on the fridge.

Peace from the hospital for all of us, especially you (note Linda Lindas pin)

While I am here, just saying my “dream” for the next 5+ years is to nurture community in my neighborhood with an arts/games/learning/music/coffee space and welcome more guests – both foreign and domestic – to hang out in 土田 since hard for me to get elsewhere.

Healing: hospital, exhibit ideas & pills (yes again)

Sept 1: [summary]

Anyhow, today like a big boy I took the bus to the hospital by myself (usually darling wife drives me and hangs out) but now we’re getting into her busy work season and I need to do this on my own… After the injections, I’m spaced out so will retreat to a little café to regroup.

Next week, our little tiger starts at a new “forest preschool” run by the YMCA which will require me doing afternoon bus rides and then switching to the old timey tram/trolley.

I figured out a routine where we’ll do the switch waiting at the Uno bus terminal station which is a building that looks transported out of a Greyhound station in Chicago in 1963 with newspaper vending machines, cigarettes on offer, and rows of plastic seats but it’s a place to sit down and wait for the bus out of the weather

8:44AM / Wakey: Oh, “Dave is sending a little updates, it must mean it’s a Hospital day and he’s nervous/anxious” Yep 1 hour til bus, still in bed pajamas and coffee mode. Get up get up

I need this guy’s “eye of the tiger” ;)

9:55AM / Bus: Made the bus with perfect timing. Sitting in front ‘co-pilot’ seat to dig vistas along absurdly narrow roads the bus choogles down with nible dexterity & seasoned skill.

Have a transfer at dreaded station bus loop to another bus/company.

Charged up my pre-paid value card on the fly. (This is Hareca card, not be confused with the 383 other cards)

Brought kindly Dr gift packet of Post Coffee (of course i decorated gift bag with appropriate stamps) to go with stainless steel travel Bodum French press gifted last time. Includes 3 kinds of pre-ground coffees (helping her replace can kohi habit)

10:22 / Outfit: Blue Stetson-brand felt fedora, short sleeve shirt (handy for injections), shoulder bag from Kathmandu (note: give it some saddle soap, 7 years old already!), cheap & cheerful & (importantly) soft headphones, & yes Margaret, a mask.

Maybe inspired by a tip about wearing darker blues now in Sept, inexplicably put on a tie from Chiang Mai for today’s character study.

PS glasses still need adjusted. So tired.

Made my busswitch… sounds really basic as im a super transit rider in many countries but, our area has 3 different bus franchisees providing service in various areas, and all of the signs are only in Japanese characters (and shockingly) but a little opaque to slow-minded like me.

By far the best of the three is the one that comes out to our home (called Uno bus) with beautifully maintained vehicles, great Wi-Fi, power outlets, comfortable seats… This one is a little bit more “standard issue”

Re above: That meant to say “unshockingly” because of course it’s written in Japanese because this is Japan duh but still, having the ABC version (especially on the special green bus designed to do a tourist loop) would be a super easy quick useful addition.

K, at hospital. no snaps permitted (obv)

Snack in between the various check points, gotta not fade

yes a photo of a konbini snack to keep energy up for injections etc

3:55PM Good news is: survived the *multiple medical checkpoints* of the hospital, including all the checkout/billing/insurance desk + got 13+ prescriptions submitted including some new medications (muscle relax, migraine) and will be delivered by courier.

3:58PM / Liberal Cafe: Got late lunch & siphon coffee at “Liberal” where boss calls me Mr Friday & exchanges postcards / ¥1250 for daily set minus rice plus coffee – shared a book of paintings from Shikoku & Germany

When i arrived at Liberal café, the boss says “oh it’s Mr. Friday” and I felt like a regular.

I might do a super low-key art exhibit there too (postbox paintings) will totally let you know and we will do an “opening” even if it’s just two of us with siphon coffees.

4:00PM / Bus switch: Caught bus and at Okayama station, oh my goodness, there are foreign tourists, wearing shorts, talking loudly wearing, backwards baseball hats & eating ice cream. It’s all so strange! :) {no one comes to Okayama}

4:33PM / Home: Oh im home & in bed / thanks for hanging out with me on my journey… Helps the anxiety tell my story along the way

Bonus / Data: geeky medical imaging fun delivered by app

The data in these clumsy screenshots doesn’t necessarily need interpretation by we laypersons but just the fact that they “exist” is fascinating. Dozens of images, and all sorts of blood test results all of the Japanese is still beguiling and difficult to translate medical terms of course but still… The fact that it exists is very pleasing

Briefly: blood flow to my frontal cortex of brain is insufficient which impacts executive function (i get confused and non-verbal) and easy weakened but spinal fluid does not seem to be “leaking” although there is a clear impingement on cervical spine (i think result from car crash Jerome Idaho, 1988)

MECFS study: Mortality in Patients with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

“The findings suggest patients in this sample are at a significantly increased risk of earlier all-cause (M = 55.9 years) and cardiovascular-related (M = 58.8 years) mortality, and they had a directionally lower mean age of death for suicide (M = 41.3 years and cancer (M =66.3 years) compared to the overall U.S. population [M = 73.5 (all-cause), 77.7 (cardiovascular), 47.4 (suicide), and 71.1 (cancer) years of age]…”

Oh, and: Importantly: The master of my little secret kissaten trimmed these three beauties off a tree to see me on my way / he said yuzu but look like sudachi… but I’m not all that smart about these matters. Regardless bound to be tangy.

[Fast forward] Sept 4: Today on “tidying up with daveo” comes a variety of tasks involving: figuring 日本語 characters to identify medications and then, a “Laverne and Shirley-esque” (or “I Love Lucy” if you’re older) series of manual tasks, scribbling letters, tearing packets & sorting into bins #mecfs

The tasks are way quicker and easier now as most of the medications are bundled into “morning, noon, evening, bed” packets by pharmacy & TCM are in numbered sachets // although there are always situational outliers and new meds to test out before putting into the routine #pwme

Pod and Book addendum

Healing: anxious run-down of hospital day

Aug 3: I’ve got a big long day at the hospital tomorrow, preparation for which is my priority.

So I’m going to fold some laundry and tidy up the writing desk.

Resisting desire to re-hang new art.

Did I tell you about our massive closet project yesterday?

Will find a long-winded yet loquacious esoteric historical rabbit hole podcast/video/audiobook (what’s the difference anymore?) to listen while I’m doing the above.

(Yes Margaret, I scribble when I’m anxious)

“to seriousness, as a miner who is always in danger makes haste in what he does”

V vG

Aug. 4: Terrible sleep, unbelievably anxious about today’s hospital visit even though I’ve done this literally hundreds of times before…

So, “pregaming” at my tiny calm cool coffee shop from which the master sent me a postcard (with transcription from his diary remarking on my first visit to his kissaten)

Machinery translation / dapper & injection

I keep whispering to myself (while at hospital checkpoint 2 of 5 or 6)

“you’ll be okay”

(I neeeeeed a long rest, however, i cant think about quite yet) but also, im #betterthanbefore

Always exciting to go to the “department of nuclear medicine”… Isn’t it? #BetterThanOppenheimer

Protip: for “tube tests” I now bring my own sleeping masks and earplugs and ensure them there is no metal included.

I have a whole arsenal of earplugs for different circumstances and situations but my “heavy artillery” are custom made by a hearing aid maker in Thailand and work their way down my ear canal and seal off the entire world when fully inserted.

Oh and I took my wonderful doctor a gift of a travel size Bodum French press – stainless steel with extra lid.

She’s incredibly busy and I always find canned coffee empties on her desk so trying to change that travesty.

Also, some bamboo charcoal and a shodo style letter.

Of course, I also have (at last count) 47 different sleeping masks in my continual search for the “perfect sleeping mask” / eventually, will sew my own but my fingers are much more geared for “big clumsy rough” projects right now

Postbox in the hospital / so many extra services available

Colossally long day at hospital. They’re incredibly efficient, organized and caring but my goodness, it’s a busy place and today had several different checkpoints including injections and scans in magical tubes.

My darlings came to pick me up fortunately, we are now home.

Thanks as always for my “fellow chronic and complex travelers” for chiming in with words of support and solidarity.

In my mind, summertime is especially hard for folks like us. #shrug

Diary: ghee, ice packs, carpet baggers and immigration anxiety

Scrambled eggs in ghee

Packets of medications and supplements + 水

Errands to: 
* hospital (admin); 
* preschool (applications): and,
* immigration (hopeful for resolution)

Then buy father-in-law dapper hat for birthday present

Ichiro is outside trying the reel lawnmower

Tomatoes from neighbors

Ice pack on the back of my neck

(Internet carpet baggers capitalizing ad-laden “think pieces” breaking down sht don’t know about someone who publicly pleaded for help for years like they're wise forensic music-scientists/anthropologist/psychiatrists)

#Diary

Meanwhile:

Q: At immigration office (again)… Will my extension be approved for 1, 3, or 5 years Or denied & i go right to airport??

Interlude: They’ve disappeared with my file / note: at least the “don’t do drugs“ posters are now pinned it to the wall rather than duct tape like previous. Seems the office had a bit of an fresh-ip over the last few years of them doing… Hmmm not much due to closed borders etc #anxious

A: 55555555 years (clarification: 5 years but/& didn’t throw up in the office from nervousness) #GreatNews #Japanlife

{was a bit of an Odyssey this time around // had the Tiger Air direct flight from OKJ to Taipei on standby :) / last time I had a visa situation back in 93, I went directly to Guam and ended staying for a year and a half}}

Carrying on: made it to the hospital administration desk with minutes to spare to get some “magical important disability paperwork“ which I folded efficiently into thirds and inserted into the provided envelope

Onwards: to new/next pre-school (including figuring out the route which I’ll take by bus and street tram to pick up the wee bairn from time to time – familiar in a way as it’s from “bus end of the line to bus terminal (with vending machines!) to tram end of the line and reverse“). More about this but it connects to my dad’s first job working for the YMCA in the 1960s.

[Saw a boat which says something about going to the Setouchi Islands while we were driving, snapped a picture for Ichi-Stan]

A friendly “thank you“ for all the words of support recently.

{Funny how it goes: we build real relationships through these beleaguered channels and somehow found each other amidst the static.}

KK says, “damn yer back to Tweeting all day long… :P”

I reply, “I tweet when the anxiety gets out of hand… I’ll disappear again soon to free up your feed for other robots // Anyhow, I figured you would be slightly enamored and possibly even vaguely impressed seeing what I’m pushing through the same way I’m always showing up on your projects #ImYourStan // And really, I use Twitter as a handy notebook // then becomes diary posts in my beleaguered “creative life archive” site for #personalarchaeology purposes // which then, as you noted, the AI robots can slurp up to remix into other forms and functions

PS By the way, always fresh posts at my web archive // most recently a couple more lyrics from my “old man punk” series… make blog posts instead of playing games or watch movies or whatnot… Although kind of wish robots could make for me (not writing, just publishing/metadata)

Now: home in a cool dark room with many ice packs and noise canceling headphones

Recap: All of above is a big relief, a real challenging few weeksbeen feeling a little bit “unlucky” (as ridiculous as that sounds) this last little while but feel like turning a corner and hoping to spend a lot of time in bed – most important is a lot of rest + in kura with creative projects & with ukulele in August / heck, even have the kiddie pool filled up w/ awning & a grill nearby

This year seen plenty of big moves but used all of my batteries.

Next step: blood flow to the brain imaging scan on August 4

Unrelated to everything else: “extensive elaboration and long attention span” are basically my middle names (which are very hard to write on application forms) / iow: incapable of brevity except in haiku #UnrelatedPhotoOfMyAwesomeHomemadeGrill

Healing: *big day* at Oka-dai

snaps not allowed at hospital but one of my pretty face is ok right?

I rolled into my “big day at the hospital” with the eyepatch and tracksuit like some kind of hip-hop pirate.

{The day after the ophthalmologist, which was a day after seitai which was a day after sending group for often to the wilds (i.e. harry potter universal studios, Lego land, all the cherry blossoms) in Japan with a pleasant sayonara (and the usual goat birth) followed by barbecue, goat milk cheesecake apparently there was some salad …}

no photos dave! sorry, really but its all so exciting being taken care of so well

Went to the University hospital and in one single visit did the:
* proper consultation with the MECFS doctor (told her I am doing a profile poster boy for open medicine foundation this month to shine some light on their unique work)
* got a list of all my current medications written in English on hospital letterhead to make it going through that Canadian customs somewhat easier, then…
* the traditional Chinese Medicine Doctor (kampo) ho always examines my abdomen with great nuance and enthusiasm, as well as pulses and tongues – and he was quite excited about the increased strength of pulse and “general goodness” of abdomen
* + same kind of letter from with the Chinese characters of the medications, English analogs, and all the necessary override forms for receiving 70 days of medication in one fell swoop
* then off to injection… taking it now in a single push from a comically-large syringe rather than the drip drip drip. Basically neurotrophin plus vit B & C etc
* then off to an MRI for my cervical spine…

{Have I told you the saga of the car accident in 1988 in Christmas Eve in Jerome Idaho? Yes for sure because this goes back to the India Ayurveda and the MRI there where the lumbar 3 and cervical 3 are out of whack…

Kindly Seitai doctor has worked on the lumbar for three years and finally got it moving and it’s been a cataclysmic change, pain reduced 87.8%, [and all the doctors over the years who have told me “all there’s nothing wrong with it” or “here’s some pain pills“ or you just need to do more sit ups“ can well… I’m trying to think of something clever but anyway] the lumbar is feeling better}

So there I go, changing into fantastic pajamas (which, unsurprisingly) I was very tempted to steal but I did not because I’m a responsible Japanese resident – naturally, brought my own earplugs and eye mask and into the MRI tube to check on cervical which causes my left shoulder blade to basically be “frozen“ with a constant stinging pain from the shoulder blade to the back of my skull… You know the usual stuff.

*Then time for a sandwich! Because of course the hospital has several embedded restaurants… We bypass the ubiquitous Starbucks and because restaurants are so overstimulating, acquired some sandwiches and found a little lounge on a bench in between… and I’m not kidding… a beautiful postbox and a lovely phone booth… Yes cherry blossoms are beautiful but put me between the postbox in a payphone and I’m happy

* While there, scanned the QR code for the various prescriptions (both allopathic and kanpo), off admin area to pay… The cost of the MRI, consultations and injections were fairly minimal but we had to pay extra for the special letters of the medications because that’s “not normal“ fine whatever.

Did I mention we scan a QR code and it goes right to the pharmacy and the elves get to work preparing it for us and then send a text message when it’s ready?

So in the interim, we saw a little narrow staircase with a sign saying “2F used books and beer” which seems like it was made for me… I purchased the three English books they had in stock: two were Tin Tin (Black Island and Blue Lotus) and a Chronicle Books’s published collection of vintage hotel luggage tags. Perfect!

I also bought ¥500 worth of Japanese 7 inch vinyl to take as gifts and a Italian made pink necktie for ¥300 to stuff in my backpack in case I have to look vaguely respectable at some point. I did not purchase a beer.

usual view of my shoes at hospital (its a series!)

Healing: (very brief) memo from MECFS check-in at Oka-Dai

(while world continues to meltdown in various ways) just finished another multidisciplinary visit to Okayama University Hospital including extended consult with TCM doctor, IV drip of a new pharmacological cocktail, and consult with #MECFS specialist.

Also discussed the terrible pain and impact from the air pressure changes during typhoons, turns out this is very common with people in my situation. Received an “emergency prescription“ for this scenario.

{unrelated photo}

Extended: Neurotropin is main ingredient in cocktail mentioned above (along with vitamin C, and anti-dizziness agent and others) and quite positive impact / also now taking “ketas” (generally used for bronchial asthma), off-label to increase blood flow to brain. Also, lengthy and pleasant consult with traditional Chinese medicine doctor resulted in a new compound of magic powder.

Note to self: provide other Sciency name for ketas, and Chinese name for new compound.

As previous, took a long and memo of notes to be respectful of their time and not to forget anything.

I gave her a book of poetry from Muriel’s Journey “Fire from the Heart” (plus a printed copy of the great article recently in the Atlantic magazine) and my gift was reciprocated by a fantastic book/magazine (in Japan, sometimes these are called “mook”) edited by my doctor with a variety of articles, essays, manga style adaptions and what not about MECFS. I’m really quite amazed to be in this program and to be this “seen”.

Diary: Hopeful logistical annotations (not about wild boar)

I hope you enjoy hanging out with my unnecessary annotations.

Summary: yes, +/- 90% of my creative energy of late is spent on government paperwork – passports, taxes x3, disability, resident permits, visas, insurance, pensions, various IDs, certified translations, notaries etc. (the rest of the time, i eat oatmeal, fold laundry and make mix tapes).

Yesterday:

  • Tax papers signed and sent (to one of three national jurisdictions with which i contend, (for the time being of at least) still have to submit payment
  • Scans of important family registration/birth registration papers (acquired Monday at the Ward office) sent to certified translator for certified translation (duh) plus notarization to be returned by registered mail
  • renewed domain, yes, i only pay for one or two domains now
  • unplugged hard drives and routers drain a couple hours of pretty serious thunderstorm just to be safe
  • prepared a couple more posts for the creative life archive just to get down to the “only 300” in the draft/pending folder… Anything you’re enjoying from this project recently?

Still have a few series which just need a bit of ”clean up” to finish (much of which I can do from bed in a semifog) but a lot of stuff is just gonna wait for another “blitz” run.

Gonna slow this project down I think as I need to move on to three different projects:

1) finish Kerouac in Kobe video, I’m really close, but editing video is so rough on my eyes! October is a big month in the Kerouac world and I wanna make my contribution.

2) Google Drive shakedown, move/archive/back up files, cancel my 2 TB subscription (this is final step in my “quitting the saas” project this year in which i’ve canceled more than a dozen various online subscriptions which were really handy when iwas nomadic but now kind of redundant expense)

3) poetry book manuscript assembling project / long overdue, have the poems (so many!), have a concept/working title, and moving poems around is much easier on my eyes then video. It’s not something that will “make money” but it will feed my soul and hopefully inspire my friends (that’s you!).

Once I do this, then I can move on to a book of nonfiction travel stories and then a book of fictional short stories but first, these poems need an audience to breathe life into them – thoughts?

Today though, gotta:

Continue reading Diary: Hopeful logistical annotations (not about wild boar)

Healing Ramble: Brief notes from Okayama Uni. Research Hospital #MECFS clinic

Brief notes from #MECFS specialty clinic at Okayama University Hospital Sept. 2, 2022. (Originally published via @uncleweed Twitter) – intro in this video mostly about poetry in slender books and this preview “Healing note: new MECFS Clinic at Okayama University Hospital“. PS Referral took about 7 to 10 days (much less than the 18 month long wait times I was dealing with in BC)

Very brief version: long day, spun me out but “felt heard” & respected and have some new approaches.

More notes:

Was at hospital from 9 AM till 3:30 PM… Completely wiped out but felt heard and seen.

It’s a teaching hospital so a couple of young keeners were in on the fun and I asked them questions like they were my interns “back in the day” :)

Primary doctor asked a lot of really good questions ++ she dug into my history with a car accident in 1987 (plus various fainting/concussions) and impact on my spine to investigate whether I am a “spinal leaker”

My bilingual medical summary prepared in advance was a stroke of momentary genius. very helpful as showed I have tried many modalities (done the work), made sure I didn’t forget anything, and showed respect for their time {35 pages condensed to 3 in 2 languages}

We also discussed the mental health side of this whole “living with a chronic complex disease and being disrespected by the medical field” and the work I’ve done with counselling, CBT and the experiences with various psychiatric assessments & importantly, where I’m at now

Did a laundry list of blood test (importantly in my case, thyroid and cortisol) as well as an IV with some new medication – Neurotropin (better impact than orally)

Have two new vitamins, plus one traditional Chinese medicine compound, and one sorta experimental (off label) medication to add to routine

[Update} this is Traditional Chinese Medicine to my #MECFS routine.

补中益气汤 Bu Zhong Yi Qi (BZYQ) decoction is a classic prescription in Chinese history that has an obvious effect on improving fatigue symptoms.”

{Thanks Dr Erikson for link}

I was wheeled around everywhere and it was a hectic busy bright environment but I was also smart enough to bring my eye mask, earplugs and book

As this was the first time at this special (referral only) hospital, had to get a special card, download a special app, fill out specific forms

I go back in three weeks to review progress with kindly Dr (did i mention she was rather comfortable in English so we code-switched a lot?) and have consult with traditional Chinese medicine specialist + discuss referral to specialist in Hiroshima about the aforementioned spinal leakage

Continue reading Healing Ramble: Brief notes from Okayama Uni. Research Hospital #MECFS clinic