Memo: Hospital day yesterday, waking up completely wiped out but felt heard by the doctors, a lot of fluids went out and more went in, referrals for some complicated/intricate tests and evaluations. Unfortunately, (for me) my doctor got a “great opportunity” to move to Kyoto University Hospital #MECFS
Summary: batch of new tests today, adjustments to medication, appointment for blood flow to the brain test and referral to a specialist check possible residual impact for multiple concussions. In other words “just a normal day in our lives, isn’t it?“
Too much info:
IV injection combination adjusted (neurotrophin plus various B vitamins, C vitamins and “trace” minerals
One recently prescribed medication to deal with cervical spine pain (from dislodged disc pinching nerve) discontinued due to negative reaction
Blood flow to brain scan test scheduled for early August (common conundrum amongst folks with my illness, makes standing up difficult and prone to fainting and in my case at least, debilitating headaches especially during changes of air pressure in typhoon season
Four (or five) medications (two of which are basically vitamins) which I’m tolerating well, increased
Two medications which I am now only using situationally rather than regularly, appropriately decreased
Two of the five traditional Chinese medicines increased in frequency, the other three remain the same. Doctor pointed out pulse is stronger/“less thin” and abdomen is improving (less pain and tension) and tongue is looking healthier / FYI: pulse, tongue and in my case abdomen are the three primary diagnostic tests for Kanpo
Five vials of blood drawn for various hormone/chemical/vitamin/mineral levels testing (thanks Theranos :))
Referral to a brain/neck injury specialist in the allegedly charming town of Onomichi, where a rather legendary doctor keeps his practice rather than moving to the “big city” which is quite refreshing. My kindly doctor was thoughtful enough to send me there rather into the gray sturdy chaos of Osaka. Bless her heart. No date yet but may be can make a little bit of trip out of it to see the town with so many people adore / Maybe I won’t leave and set up an advance camp for our family
Had frank discussion about mental health issues but not just about “general hopelessness and/or PEM” but rather brain hormone levels (serotonin, dopamine, serotonin etc.) plus effects of various brain injuries, and efficiency/workingness of various nodes and glands (no I did not mention the pineal gland specifically because didn’t want to act too much like a DMT seeking New Age hippie ha ha) #InsideJoke #NotReallyFunny
Asked for a referral to English-speaking psychiatrist who won’t “just talk“ and/or definitely not SSRIs.
Unfortunately my kindly Dr has also taken at “great and prestigious new opportunity” at Kyoto University Hospital, once again proving my theory/rant that Tokyo and Kyoto suck all of the oxygen out of the rest of Japan.
There was a very nice formal letter explaining all of this but truth is I am terribly disappointed as she was extremely empathetic, open to new ideas, read the articles i provided, and spoke good English which is super helpful for medical stuff. A real kick in the gut for me – super disappointing and nervous about her replacement. I cried a little bit in her office and there’s no crying in Japan
Also: Set up automatic delivery with the pharmacy so I can start to come to these appointments by myself by bus (and not haul for shopping bags of medications home with me on the bus) because it’s becoming wife’s busy season so I need to be a little bit more independent and cognizant of her time. (I take care of the dishes and laundry etc. at home, doing my part)
Now at a quirky café to replenish as I am somewhat white as a sheet and fading. {I think I mentioned this café in a previous dispatch, noticed a cute post box from the outside and the name “liberal” / have now visited twice, noted many cat tchotchkes scattered around – learned the friendly fellow took over from his dad who started it 47 years ago, the wife cooks one magnificent lunch set choice per day, the set above cost ¥950(!) + I spend an extra ¥300 for a coffee to go with the hot tea and the cool water for a triple beverage fun / I will go here every time for recovery after my hospital appointments, especially when traveling so lol when I tend to “forget to eat” which isn’t a good idea / I did my “card game“ in which he chose two of my postbox friendship cards which he quickly put on display, what an honour!
I guess this has become my diary entry for today. Thank you for reading.
Update: the whole pharmacy routine worked out really well as my medication‘s are not delivered by courier the next day and my morning, midday, evening and bedtime medications are organized into little packets, which match along well with a little sachets of traditional Chinese medicine.