Tag Archives: mecfs

Healing Ramble

Healing: *big day* at Oka-dai

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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!)

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Craft Sessions, Scrapbooks + Journals

Sort-ganizing Ephemera by Post (with Royal Dudes & the Muffs)

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Yup, i ramble on about items arrived by post and think you should hang out (i’ll make tea)

Opening a big santa sack of recent items by post including aerogrammes/ aerograms, passports, international driver’s licenses, documents, hotel letterhead, records (namechecking recent interview on Rice Field Records), postcards, etc from Nepal, Monaco, East German DDR, probably i dunno… Yugoslavia, Bulgaria, United Nations, others i don’t quite understand.

Also mail from Ukraine which allows mention of intrepid postal workers delivering despite war and displacement, + blabbity blah about guest coming to visit, feeling discombobulated after #MECFS “crash  mode” – that’s it except the parts i forgot. Argh prob a ramble about the “passport forgery project” {recalling i riffed about taking “intimate documents” and adding life to them}

Bonus: Rice Field Records Interview

{this should and will be a separate bonus post but in the meanwhile…}

Continue reading Sort-ganizing Ephemera by Post (with Royal Dudes & the Muffs) →

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Healing Ramble, Personal Musings

Healing/ Diary: coffees, iv, pizza, liner notes, friends & flowers ~ expanding envelope

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Just a date/time stamp post to remind myself to update my medical diary: went for IV (by bus) 3:30 PM yesterday 2/22/R5

{Also I might need to trim my mustache slightly}

Before the medical appointment, we did a few things around the house, mostly pulling the suitcases out from the barn and errand them out… this is the first floor of the barn is looking these days… Have also started a “emergency preparedness kit“ as well as having the secondary stereo set up and records here.

Realized a couple of beautiful wool sweaters were a little worse for wear as well so washed and hung to dry to survey the damage.

At some point along the way, Ichi dug up some turmeric from the garden.

While getting the iv, listened to @TBeanpod “Valentine’s“ episode… {I guess I’m a bit behind but I always enjoy glimpses into his life and parental wisdom about molding growing kiddos. Thanks for the goodness}

Feb. 21 Typed the “liner notes” (so to speak) for 2 mixed CDs + 1 mix cassette tape… made like last November or December but got stalled out by a rough couple of months. All ready for the post office now, decorated and everything!

Includes a mix of my spoken word poetry/ambient field recording audio collage creations, a few spoken-songs i crafted from loops and samples, songs by musician friends with my words & their music, some spoken word i did on a heavy (Bad Wougar) album, and other DIY recordings.

And yes tracklists are really typed (albeit poorly) on an Olivetti Lettera 34 (like 32 but ¥ key) #Typewriter

Every CD/Cassette is different (because i like to make things difficult) and the liner notes are all original as well.

One time, i made a video of typing these for no particular reason… well I guess it’s because i like the sound and might keep someone company on a lonely day.

Example video: Typing Liner Notes in the Kura (with Joe Strummer vinyl)

I am always tired & like to sit on benches #mecfs

2/20 Stopped at a lovely coffee shop after visit to orthotic foot guy and before a visit to a park for picnic.

They even had a tip jar on the counter which I had never seen in Japan before… But it was deliberately filled up to the top so was really they’re just for aesthetic purposes and ambience rather than expecting a tip :-)

Took coffee & sandos to a park and saw a great little “hangout hut“ made from repurposed sake (or maybe miso?) barrel idunno at the best kids playground park I’ve ever visited in Japan… {Like it’s not even close as most playgrounds are a rusty chin up bar, a broken swing and a non-slippery slide}

I did take a couple other snaps of my darlings but for now, here’s a barrel with some holes in the side and a roof…

And I want it in my backyard

2/19 this morning, the two darlings were up early making a drive in the K truck to a bakery for a variety of fresh bread which we enjoyed with hot cocoa for him and coffee for us.

Then we organized his “next round” of clothes as he’s growing out of current stuff. Much tidying!

They headed off to tea ceremony, I watched a bit of a hockey game while eating a Bento, scanned a few tax documents, put away some cleaning supplies and then into dark bedroom with head spinning a bit so uploaded some videos and transcribed some poetry notebooks in the dark.

2/18 darling wife’s band came for rehearsal at the house, there are now 3 kids and 1 more on the way amongst the members! #NextGeneration I made 3 kinds of tea and served on various China + set-up/took a promo snapshot for their upcoming show. I should note that while the band was rehearsing, I snuck out to the kura barn to set up the drum set you may be caught in a previous post. Came back in at the one hour mark to do the tea service and then stealthed away to fiddle.

Later we made pizza & he’s got the skills down solid now – spins the sauce with a spoon, adds toppings like a pro(ish).

So glad we have a full sized oven but still want to make a brick/clay pizza oven in the backyard… eventually. Will be so handy for birthday parties and get togethers.

Redundant notes about the illness

I’m getting closer… Eventually I can be VanGogh’s Postman

After a really rough January, slowly expanding my energy envelope little bit by little bit… Trying to get a little bit more stable for the upcoming “BC invasion” (details coming) plus several groups of guests coming to visit in March.

Recap: (as you prob know) I go to Okayama university hospital once a month for a trifecta of treatments (plus there’s always some kind of admin stuff to tend to) then weekly to a local clinic for additional IV cocktail, plus seitai treatments 2 to 3 times a month, although currently the doctor is ill.

++ take various medications, supplements, vitamins, and traditional Chinese medicine concoctions at checkpoints 4x each day. Some of the medications are “off label” usage (not specifically designed for #MECFS) as well as some other new unique “experimental” approaches [neurotrophin] and “ketas” (generally an asthma medication which increases blood flow to the brain… #NotScientificExplanation) neither of the above are “FDA approved” afaik

A note about “ketas” for #MECFS curiosity seekers (from me-pedia)
“Drugs such as ibudilast (brand names Ketas or Pinatos or in Japan), an anti-inflammatory drug used for over 20 years in Japan, mostly for asthma and post-stroke dizziness.[7]… Ibudilast can be combined with opioids to reduce chronic nerve pain.[7] Ibudilast is also a phosphodiesterase (PDE) inhibitor, and crosses the blood-brain barrier and suppresses glial cell activation.”

#MEpedia “Vagus nerve infection hypothesis”

Have also started a “new version” of a somewhat controversial #mecfs medication which i won’t mention yet.

Also use variety of vitamins and supplements… was using a lot more supplements but not seeing significant impact and becomes rather financially difficult to be honest and a lot of work to source at all.

I have also investigated low-dose naltrexone but that’s a no go in Japan.

Thinking of a friend

Drying tree blossom petals while thinking about a friend 😞

Flowers with thoughts of a friend

Thinking about a friend… #sigh

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Healing Ramble

Healing: rocking hospital visit (plus green kei-truck & ramen)

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(Brief) Diary:

Rocked Okayama Uni hospital visit with 4 check points (#mecfs specialist, TCM kampo, IV cocktail & admin tasks)

Thanked the doctors so much for what they’re doing for this weird illness and yes, there’s suddenly so much more research going on. The revolution continues for the missing millions.

+ saw sweet green kei-truck; ate ramen waiting for scrips; & spotted cute Indian/Nepali resto for next time

Came home, long hot bath, now in bed, much medicines to organize. I’m trying…

Bonus: the Ramen shop from the outside, kind of classic

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Healing Ramble, Personal Musings

Observations: poem, post box, bus stop, IV

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was just waiting for someone to ask me the time so i could say “North by Northwest”
walked to post office

as rain fell

imagining Van and Vic

in April & May

writing new endings by 
crafting beginnings
with new cast of darlings

{mailed 4 packets of printed matter}
2 "forged" passports 
4 x postcards with dozens of stamps
1 portrait of young sailor

now a fire

Two observations outside of the doctors office yesterday / yes, can help me to locate myself when my head is spinning after injections

Continue reading Observations: poem, post box, bus stop, IV →

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Healing Ramble

Healing: hospital catch-up (new Kanpo etc)

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Finding drafts and notes of diaries from hospital visits passed, in this case from a month ago (January 2023) with new traditional Chinese medicines and sorting out various concoctions and fishing tackle boxes.

There’s likely some additional details I meant to tell you, probably scribbled down in a notebook, possibly about the new medications at the time (I usually make a note about the new traditional Chinese medicines to share with my buddy Trevor), there was also some adjustments in “conventional“ medicines (some off label uses and medication‘s being tested in Japan but not elsewhere) I probably meant to share with other people dealing with #MECFS as well as nuanced adjustments in my vitamin/medicine injections (which I’m doing weekly at a little local neighborhood clinic).

For now, here are two snapshots as a placeholder to say “I went to the hospital on this day and I did these things, and I’m doing my best“.

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Healing Ramble, Portraits of the Artiste

Me: looking exhausted & ‘real’

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There is a part in Wes Anderson’s spectacular film “Isle of dogs” where the beleaguered canines are given a serum injection which instantly cures dog flu, snout fever, and solves the proliferation crisis – all in one shot. The first dog “Chief” excitedly remarks how his eyesight, equilibrium, nervous system issues are all suddenly is resolved as he brightens up with a spark. Eventually, I dream that there will be a similar solution for MECFS.

As I go along, I *apparently* snap ridiculous and certainly unnecessary and unflattering photos of myself looking exhausted. Usually, I share the photos where I manage a smile. (if you’re smart, you know my “tell” of when I am manufacturing a smile). #PokerPlayersNotice. Some of these snaps of possibly on other social channels as a signal that I’m still alive.

I’m not sure why, it’s only sort of a recent habit, but I think it’s because in the future I can look back and say “right on Davey, you hung in there, you didn’t give up, you didn’t take the exit, and look at you, you’re doing right now”.

Continue reading Me: looking exhausted & ‘real’ →

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Personal Musings

Diary: Photo evidence, Tintin, Unicorn, Dead shows + passports, typography, telephones / annotations from usual days

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Why yes, I am very official, thank you for asking.

Licensed to hug with Diplomatic Immunity (adding to passport collection)

Entered the TinTin phase of Ichiro’s life:

Well blistering barnacles, no internationally minded youth misses out on that goodness that is Tin Tin, I have a complete collection including the “rather awkward” ones written in that *cough cough* colonial European mindset.

Hergé’s leather satchel of supplies

We’re enjoying Tintin in Tibet right now (and I’m up playing the friendship angle and downplaying the plane crash angle considering our upcoming travel at his fascination with airplanes).

Yesterday, after seitai, we stopped at a secondhand shop to purchase a couple more dining room chairs, shelf and whatnot… The secondhand stores here are really fantastic and we furnished our house in our eclectic style thanks to these treasure troves, but the point is: There was a model ship, triple masted, vaguely like The Unicorn, on a shelf and while we were purchasing the other larger items I said “and I will take that as well!” (pretending I’m paying in US dollars so I’m getting a great deal – macro economic currency humour is great right?)

Brought it home and a little guy right away realized that it was “just like Tintin” and the Unicorn. He examined it very carefully, which was a relief because he’s at that stage were smashing things is a lot more fun :)

Speaking of: here at my “creative life archive” (fancy name for a blog) scheduled on the 31st is a photo of me doing my best to dress up as tin Tintin in the crappy suburbs in probably 1978, my glasses kind of ruining the whole thing and spent the night trying to explain to people who I was… people would say “Rintintin the dog?” I would roll my eyes and sadness/discussed and stumble away with my crappy candy wishing i could go live in some exotic land.

Also at this aforementioned “don’t call it a blog“ is field notes from a Hergé museum exhibit in Quebec city with loads of his original sketches but even better for me, ephemera, his supplies, kit bag, inspiration items all that kind of stuff. Have you seen it? I mean I expect everyone has seen every post that I put out there so I mean, you must have :-) geez, there is even a [TinTin Fun category]

Photographic Evidence

Picked up 2 family studio portraits (1 of the three of us and 1 of wife as a young girl with mother, father and younger brother) we had matted, edged (filleted?), framed and holy smokes, so great! Fancy times & so worth it. Going to make a gallery on a wood panel wall soon.

One is the three of us is from the “time traveler“ series a couple years ago / matted with burgundy, gold edge and carved up wood frame and looks quite Taisho era: mysterious and majestic.

Time Traveler Family, v. 1 (this pose with burgundy-ish mat an brown carved frame and gold edges, such fancy!)

The wife & in-laws photo has kind of a mirror image pose with “lost in Showa” beige vibes + kimono splash. Both F-i-L and I have rather “serious/neutral” expressions, both photos have baby feet and Mothers with Fujii-family trademark short-cut hair.

Will hang up soon and will look so great. Next up: photo shoot with Grandparents and us all together… so we go on #AxeHandles

Hospital Switcheroo

Not of particular interest to anyone but, for the record: Finished hopefully-last visit to the “big city hospital” it’s shiny and efficient however from now, the diligent if a-bit-worn Okayama University Hospital with their MECFS program is my primary point of contact and care.

Reminder of this article about MECFS in The Atlantic (i’ve printed it and taken to Doctors) by Ed Yong is really worth reading to understand a bit about the weird medical conundrums which me and many many deal with. Oh and a great recap by someone called Heather about “10 things i wish people knew about ME“.

Grateful Dead Dave’s Picks

Trying *not* to buy too many records of late due to impending trip (more later) but the new “Dave’s Picks” Grateful Dead is from the Eugene 1990 shows, ergo:

Also Neal Casal “Illuminations for the Dead” which was made special for the set break music at the Grateful Dead 50th anniversary shows – instrumental, ethereal, atmospheric – but sadly Neal packed it in shortly thereafter :(

And Dan Mangan’s new offering “Being Somewhere” is en route, just missing “Postcards and Daydreams” to complete my vinyl archive including the 10 year reissues for “Nice Nice Very Nice” and “Oh Fortune”

Also listening to Television (as discussed in recent “Rock and Beat Generation” video – piqued by great article in The Ringer by Elizabeth Nelson, ergo:

Aside: Need to re-up my cardigan stash with 2+ decent wool all-around-ers.

Current are a little bit too shabby (even for my “weary/eccentric community college prof” style) & cotton ones are quickly becoming inadequate for season.

i mean, who is even who here?

Now, how do I do this without leaving the house?

Note: I like “aged/classic“ communication methods but what I don’t miss: long distance phone bills (remember being stiffed so many times cause i was the sucker with a Sprint card). And my seitai Dr just gifted me a classic black rotary phone! Will sit like a noble buffalo in the studio so i can call you whenever i can’t.

(pending) Book project

Pals have namechecked for #NaNoWriMo( which is awesome National Novel Writing Month campaign) but I’m not attaching my star to it because I’m physically incapable of sitting at a chair and banging out 50,000 words // my head has the stories no doubt but the body won’t cooperate so instead I’m using the month to assemble poems like Lego bricks and hide out in the barn…

It’s really also a “mental reset“ from this year of endless paperwork, I mean so much paperwork and so many hospital visits.

The good news is: the recent medication/IV routine and seasonal weather changes here have given me a little bit of a spark / Summer was brutal, typhoon season crushed what was left of my head, but now it’s chilly, crisp and sunny. So aside from a neighbour (probably 3 km away) trimming their grass requiring me to close the window, I’ve managed to patch together a couple “good days” in a row. Just writing this though I feel like I’m jinxing it. But, I’ll eat my oatmeal and head to work at a standing bench desk with records playing and probably record somekind of meta-documentation (unsurprisingly) and see how we roll on.

So, recap: Planning on spending November in the barn assembling a book of poetry, with snippets of letters, maybe some musings, prose riffs… I’m not sure yet but… Importantly, I want the book to “look and feel beautiful”.

I’m not sure what I will do for publication whether that’s self/on demand, shop it out to a boutique publisher but it’s really important to me that it’s typeset to look timeless and dammit, gorgeous and be printed on paper stock with a nice hand.

I think I will add in some black-and-white Lomo images just for atmosphere in section breaks but stay away from color so it doesn’t become an unwieldy expense for people to collect/purchase.

Mostly I just don’t want it to look like that sort of “I made this book in Word and sent it as a PDF“ typography style if you know what I mean. Margins, gutters, typefaces are all very important but I don’t really have the true skills.

Anyhow, i’m making the book for Stanley (before he heads off to sea)

yes, he is all of this and more more more

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Beat Sushi

Rock and the Beat Generation interview (+ usual poets & postal)

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Quick hits (while pausing music by Neal Casal and next up Television –the band not the communication medium – to talk about Kerouac in Kobe interview in Simon Warner’s “Rock and the Beat Generation” newsletter and encouraging you to sign-up… plus:

* remarks about two inspiring poets: Ron Whitehead & Marc Zegans

* the conundrums/excitement of adding sparks to tinder to help a creative project gain kindling-like momentum

* review of upcoming storytime on “writers read the early sht” with Jason Emde

* a note about my occasional podcast “Postcards from Gravelly Beach” and the machinations of moving feeds from relatively ancient times

* a hint I’m working on a poetry book tentatively titled “a circumnavigation of sorts”

* something about my weird illness ME/CFS and recent articles in the Atlantic and San Francisco Chronicle

+ usual thing about “let me know you’re paying attention and I’ll send you a postcard” maybe

Interview #12: Dave Olson
A Canadian who long went East reveals the ins and outs of a magnificent Kerouac event in Japan forced to dodge the impact of the global pandemic yet which hauled triumph from the jaws of defeat

from Simon Warner “Interview #12: Dave Olson” Rock and Beat Generation
Television and the Beats and DOA and other items

PS I’ll add links to relevant things later / still in the barn listening to records and writing letters. In the meanwhile, you’re clever and I’m confident can figure it out on your own.

Yup, that is a signed *by councillor Joe Keithley and Randy Rampage (rip)* original pressing of DOA’s Hardcore 81 on the wall

Oh links!

Since we are here and archiving

Marc Zegans chimed in with:

Another charming, delightful, and thoroughly engaging video from Dave Olson. Really appreciated his warm shout out on behalf of Lyon Street and my work as a creative development advisor and friend to writers and artists of all stripes.

By the way, Dave was very recently interviewed in a fascinating piece by Simon Warner. You can check it out on Simon’s Rock and the Beat Generation series.

Ron Whitehead chimed in with:

Thank you Dave!! I included Richard Hell in the 48-hour non-stop music & poetry NEW ORLEANS INSOMNIACATHON which historian Douglas Brinkley and I produced in August 1996. I introduced Richard to a packed house. Doug and I got a historic marker put up in front of William S. Burroughs home there in Algiers, across the Mississippi River. Burroughs did a phone interview with us, as part of the INSOMNIACATHON. We included many of The Beats. Dave, you’re interview in Simon Warner’s important and fantastic fun Rock and The Beat Generation is excellent! I love your posts! Keep up the great work!!

One more note:

… float up all the poetic boats and gently encourage reader to dig into your works on their terms. I’ve found – in the journey of a creative artist – sometimes the rewards come unexpectedly and are different than originally thought, so whilst waiting, can feel a bit lonely so best make yourself comfortable to enjoy the experience.

dvo
Might Get Lonely - Reap Rewards
Might Get Lonely – Reap Rewards

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Japan Cottage Musings, Japan Life/Travel

Charcoal, Poetry & Postal + topics of varied interest

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it’s cardigan season so let’s discuss a bonanza of topics, shall we?

While the industrious senior ladies are cleaning the house, I fire up a machine to tell you about the following items:

several pleasing items
Continue reading Charcoal, Poetry & Postal + topics of varied interest →

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