Briefly: Messed up date with hospital appointments (every time, like lining up dominos to get all doctors/injections/tests lined up on same day and was supposed to be here last Friday) getting some of the stuff done today but means back here again next Friday. Very discouraged :(
The hospital staff were super accommodating and got me in for “cocktail injection” and with Chinese Medicine Doctor who reviewed my memo and gave a thorough exam of abdomen, pulses and tongue.
TCM Doctor told me pulses are very weak and shallow, my body is fighting and trying but needs rest + Hot Springs and protein.
I’ll be back next Friday to finish up the parts of the visit didn’t get done this time including inquiries about options for IVIG & Ozone therapy.
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“.
(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.
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”.
mixed-media art library, global diary, project dossier and whole life documentation