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
The next day
Today I will remain in cool dark room like aged cheese
(Though I already ordered three tall soda/iced tea/coffee spoons so actually quite busy if you know what I mean)
Thursday we’re on the road (PS happy anniversary to Jack Kerouac‘s on the road publication today) to Osaka for the US consulate but just gonna do it as an “sniper mission” with no additional stops
Then next week starts in projects for Canadian and Japan passports for Ichiro but that’s next week…
Oh, took no photos of excursion yesterday
hardest part was finding a chill place to regroup between different parts of appointment, there was no calm garden to eat my egg salad sandwich…
didn’t wear the blue Fluevog’s, rather brown Italian leather oxfords, blue fedora
EOD
Bonus (written in reply to *another* article about Long C19)
This #LongCovid illness presents very much like #MECFS (generally thought to be a post-viral neurological inflammation issue which leaves people debilitatingly exhausted, brain fog’s, muscle/joint pain, overloaded etc.) and is chronically misunderstood and underfunded for years.