{Unnecessary preamble} Coffee, croissant and ukulele outside for a little bit under the pleasant cloudy skies. Yes, I am Cascadia chap. Happy to be cooling off after so hawt hoomid summer in Japan. Regrouping after hospital visit & recalibrating for the months ahead.
So, before I forget it all, let’s recap the Hospital day… Start from the morning:
OK Dave, get up, vitamins, more coffee, porridge, clothes, packet of papers, wallet and watch and off to hospital with you. Don’t forget your memo! Going to be a long day but you’re gonna get through it.
Made it through the first couple checkpoints, just ate some lunch and heading to wait for Dr number three… but let’s back it up:
TCM/Kanpo: First doctor is the traditional Chinese medicine Doctor who checks my pulses and tongue very carefully. Explain that my pulse is quite strong despite me feeling incredibly weak, tired, spun out etc. which is indicative of my body “trying” – but he explained to me very carefully that I have to ‘Shut it down and rest’ for several months. He went on to say that at their clinic, they deal with MECFS and long Covid patients consistently and somebodys aren’t really “pushing back” and I am but need to give time. I asked him about putting on my usual Christmas party and he says “if you can make it very simple then OK…” (Above done in Japanese but you get the point).
He also inspects my abdomen with palpitations (is that the right word?) which is generally a weak point for my wonderful delicate body with a colorful history from Giardia to appendectomies and many points in between, and again, was pleased to see strength and function in this region.
He re-upped my “usual retinue” of powdered traditional Chinese medicine packets – four kinds are used at different times of the day and two more to be used situationally (for times of excess tension and headaches).
Made sure to thank him again for taking the time to truly inspect me, adjust medications and treat me with dignity and respect.
Inputs: Next was heading up to hematology or something department where I get a comically huge syringe with a cocktail of medicines and vitamins injected into the reliable vein in the crook of my left elbow. Laughed with the nurse that her lavender latex gloves matched my shirt and then I showed her my also matching socks so we had a chuckle part 2.
Little things like this make the day go so much easier. All of the staff are incredibly precise with their routines – double checking my name, birthdate, allergies to alcohol and latex etc. even though I am well, very easy to spot and remember in the hospital. I joked that next time I visit the hospital, let’s do the light blue gloves and I’ll wear the outfit to match.
Logistics: I should mention about the check-in process which my darling wife used to assist me with as it’s done with a special card into a special machine which prints out a special paper with special numbers that break down your itineraries for the day, but like a trooper, I completed the task on my own with only mild bewilderment.
In this case, started with three checkpoints which turned into six as the doctors adjust on-the-fly when other treatments can be added (in this case the blood panel, oxygen and blood panel review).
And, to make best use of their time and to have a permanent record and, to assist the diligent clusters of medical students observing, patrolling, and learning, I always take a memo of current situation and my questions. In this case, because of the recent COVID-19 infection and feeling incredibly depleted and a bit scared through it all, I had a few specific questions & paths of inquiry.
The doctors pay close attention to this notes and are rather appreciative rather than annoyed. (Folks who have experienced medical care in some certain countries will really grok the goodness as some doctors take offense to the patient – you know, you – actually asking questions and wanting to participate in the medical care. /rant
[brain imaging: Interrupting myself to remind to better explain the brain imaging scans from previous visit as there was some inquiries… I’m not all that clever except to say that it showed a lack of blood flow to the front of my brain (frontal cortex or whatever which controls executive function), I’m not sure whether it was an MRI or a CT or something else because it didn’t make those horrible noises, yes there was an injection to show contrast in the scan but I don’t know what the magic potion was.
The results were delivered to an app on my phone [as are all my other test results and all the information about upcoming appointments and so on. Also, payments/insurance information is somehow contained within this app. The app is all in Japanese and my reading and writing skills are well, underwhelming and there’s no onboard translation scheme so I just kind of muddle through / onwards!]
Outputs: Dr. 3 also becomes checkpoint 5 after going to back to floor 2 – but this time to the “output blood” department rather than the “input” department mentioned earlier for checkpoint 4, for 6 blood vial draws // nurse was incredibly skilled switching vials one-handed while holding the spike in with the other hand. Precise, confident and swift – and again, double checked name, birthdate, allergies…
and now some kind of oxygen “something something don’t quite understand yet” which will be checkpoint 5 #whew you with me? Let’s take a break.
Oxygen / briefly: Explained the “new/different kind” of headaches I’m experiencing to Doctor who suggested could be “cluster headaches” (unsurprisingly, i experience a whole smorgasbord of headache types) so tried 15 minutes of oxygen – was huge relief and pleasing moments of calm. Want more and will explore getting oxygen for home use. {This was not like a “CPAP” just a simple oxygen mask on my face while chilling on the bed with handy eyemask.}
Stats: After oxygen, the blood test results were already analyzed and delivered so back to the Doctor 3 (infectious disease specialist) who reviewed several of the critical things we were looking for, specifically about white blood cell count (which was above range which in my case is a good sign as it shows my body is diligently fighting the viruses as often times, the white blood cells will just “give up” with an over-clocked immune system (pardon my lack of technical medical language here).
Also checked thyroid function which was all within range (four different levels) and cortisol (also within range). Checks for Epstein-Barr virus were not instantaneous but two pages of results delivered and under an hour // of course all in Japanese and not all of it is easy to colloquially translate yet somehow, felt pretty good about it all. Oh yeah, my cholesterol is ridiculously high which it always has been even when I was a skinny active vegetarian (I am none of these things now). #shrug
Translation: {If someone is really eager to try J>E translating medical terms, I don’t mind sharing this highly personal information publicly because like, “what’s gonna happen? I get more information?” And no, machine translation isn’t necessarily a great fit for this kind of project.}
Art: By the way, there are several restaurants in the hospital i hit up. The other day, while enjoying a club sandwich, apple pie and coffee, noticed some great framed albums / also rotating art exhibit on the wall. Yes this is at a hospital.
Winding down: my usual routine after the checkpoints is to roll by the payment desk and show my app (if you’re curious about Japanese national medical insurance, basically, a significant percentage is covered by the plan and depending on your income situation, you pay some kind of “co-pay” (for lack of a better word) but the amount honestly is some times rather just nominal like a few dollars equivalent).
Anyway, the magical app is connected to a bank account or credit card or something and I just sort of stumble up to the desk, show the paper dispensed from the robot at the beginning of the whole visit and show my app and do my best to smile through my mask because at this point I’m completely deliriously exhausted.
In this case, was there from 10:30 till about 16:00 – sure a long day by my standards but incredibly efficient considering everything done. {In previous countries in which I received medical care, this would’ve been many days worth of appointments scattered at different clinics, labs and hospitals so I am Very grateful}.
Anyhow, then go to the pharmacy where they scan the super-dense QR codes on the prescription sheets given by the doctors and in the past, I would tote the bags home in the van with darling wife but now that I’m rolling solo, instead they courier the medicines over a couple days later after doing a video call to review any changes. The pharmacist realize that I’m not really capable – basically nonverbal – when I drop off the ‘scrips so they wait till the next day to call.
For example: for some medications which I am trying out, they will not package in the little packets in case the med not a good fit for me so I can put it aside. Does that make sense? Anyway they double check everything via video call and then on another app, push a button and payment done. Again, some percentage paid by us, the majority paid by national insurance scheme.
Afterwards, I usually go to “Liberal” kissaten for a quiet meal/coffee, look at books or sometimes scribble postcards but by the time I finished this time, they were closed so instead walked over to an embedded convenience konbini store – as it was so late in the day, darling wife was picking up adorable son from school and they swung by and grabbed me saving me the close to rush hour bus ride (which may have been the factor for previous infection anyway).
I bought them some snacks at the konbini so we rolled home together eating onigiri and egg salad sandwiches with the crusts cut off with my favorite duo.
Not a doctor, duh: Realizing above doesn’t give too much heavy duty medical jibber jabber but maybe I’ll get courageous and productive enough to share the blood test levels… I don’t know, is that a good idea? And hopefully the info about oxygen is informative to other patients and the whole daily routine is of some interest and usefulness.
Please remind me to go slow for several months.
Bonus: so much research, conversation and awareness about this ridic illness so a couple dispatches stashed here so I can find again. Dig if you’re curious:
Addendum / dreams:
Next day: Well, folded a bit of laundry, changed the sheets and pillowcases, made tea. And now back in bed.
“Tiny steps” and rest are the requirements but my goodness, I want to write a novel, record an album, send 100s of postcards, and make a video of doing all of the above.
And yes, should not be sharing any of this but honestly, i’m increasingly mentally fragile, exhausted, bewildered, frustrated but still somehow so grateful “this version of my life” found me and convinced i still have a 4th, 5th, 6th “act” in me. F. Scott Fitzgerald was wrong.
Keeping it together my friends, a topsy-turvy stretch but I am still moving forward and letting myself dream big, ergo:
I am always writing “something” – lyrics, freeverse, diaries, shaking out the negative thoughts into slightly vindictive words (yes yes i know), usually in notebooks but sometimes in apps or files i forget, sometimes print & put on the fridge.
While I am here, just saying my “dream” for the next 5+ years is to nurture community in my neighborhood with an arts/games/learning/music/coffee space and welcome more guests – both foreign and domestic – to hang out in 土田 since hard for me to get elsewhere.