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

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