Tag Archives: mecfs

Healing: just another hospital visit, annotations

9AM Get out of bed Dave, get out of bed Dave, get out of bed Dave. You’ve got to go to the hospital Dave. Put on clothes Dave, take your medicine Dave, get on the bus Dave. Make sure you’re wearing pants Dave. Oh my goodness, have to decide what shoes to wear Dave.

Yep, just waiting for the bus as usual

10AM OK, I did it… Up, medicines, beard oil’d, snappy outfit-ish, shotgun coffee and out the door just in time and experienced all four of Japan’s seasons within the four minute walk from home to the bus stop.

Felt a little bit more springtime when I first looked out the window

{They taught me well at the school for “worlds worst secret agents”}

All of the seasons, all at once: Grey rainclouds, bright sunshine, crispy windiness all at the same time (on rather warm stuffy bus)

11AM Rocking to Belly (the band)’s “Dove” en route to Okayama University Hospital 岡山大学病院 / usual as only this & Bob Dylan’s basement bootleg are in the basc “music” app for past years (i have stashes in Bandcamp & Relisten)

Along with Belly, I’m a huge fan of Tanya Donelly’s solo EP series “Swan Song” and am partial to her songs in Throwing Muses

PS Also have signed #vinyl

11:30AM This is a “foursquare check-in” from Okayama University Hospital. I think I’m the mayor by now :)

Injections impending / 1st of 8ish checkpoints

12AM Update: nurses love my spring blossom vibe tie

{Many things happened}

My tactic with communicating with hospital doctors is taking a printed memo in both English & Japanese (i use machine assisted translation) as most doctors studied medical terminology in “English or whatever” and having something they can read rather than listen is a huge help

{in preparation, February 8, 2024}

2:45PM At least eight hospital checkpoints completed – both medical and administrative – Plus pharmacy (with all the QR codes and special booklets) and now my secret Kissaten was closed but reopened to serve me this glorious lunch with flowers on the table & 3 beverages.

¥950 + ¥400 for royal milk tea
Continue reading Healing: just another hospital visit, annotations

Theme, maybe: best intentions and all of that

Things I had planned to do today:

* Clean fans, cover and take to kura + busted lamp

* Same with the straw window shades

* Record another ukulele song or storybook video

What I’m actually going to do:

* stay in bed

* fold laundry

* listen to a hockey game

I have many things to say about:

Continue reading Theme, maybe: best intentions and all of that

Healing: just another hospital day… again

Hi from Okadai hospital #nophotos

just waiting for injection & thinking about ya.

Hows ya doing?

Left hat in m-i-l’s car (dropped me off en route to table tennis) so my fwa-fwa hair gives me full mad scientist vibes

Outfit pretty cute though / greens, blues & browns

Reference snap / i wanna be sedated bam bam bam-bam

Gosh, the staff/nurses are so incredibly skilled so today was rather rare but had a mishap getting the spike into my arm, required a couple of tries. First time ever for that. They apologized 75 times. All good, wrapped it up tightly / looks like long wait for next checkpoint

Let’s have a simple lunch (not enough time for my usual place across the streets… but there are several restaurants embedded in the hospital)

Fast forward: finished at the hospital and now riding bus to collapse at home

Continue reading Healing: just another hospital day… again

Healing: stumbling (but not defeated) & “rescued” by lunch

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 :(

*Not smiling* with my eyes

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.

of course the hospital has flowers on display

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.

Continue reading Healing: stumbling (but not defeated) & “rescued” by lunch

Healing: oxygen, blood cells, coffee & matching outfits (future acts)

{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.

PS (smilin on the inside)

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:

Kind of Jack Kerouac vibes for the lunch with a club sandwich, apple pie and coffee in a quiet corner

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.

{this ^^ dispatch is coming from a quiet corner with unscheduled brewed coffee vending break // these machines always remind me of some 70s cop show when the hard boil detective is waiting out a late night shift at the morgue drinking Styrofoam cup coffee… Yes I have that active of an imagination

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).

This is where I sat and waited for pick up. Since I had a photo of it, I put it here. This is the front of the hospital where the taxis and buses roll through.

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:

Oh my goodness, this is all about me ^^

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.

Peace from the hospital for all of us, especially you (note Linda Lindas pin)

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.

Healing: annotations from a feverish fog

Hi pals, Really backsliding from the recent C19 situation.

pocket fulla tools, none seem to work but hey, keeping handy

As you likely know, with #MECFS, my body deals with a massive post-viral infection load and thus an overworked immune system for 10+ years. As such, having a really hard time bouncing back. Just had to say aloud.

Me – being chronically creative/optimistic + always full of dreams, schemes and projects want to do – am again to point where have to “cross everything off the list”. I absolutely hate this as want to be making books, records, vids, revolutions. I am managing some postcards (sanity exercise).

{I know shared this before but}, my post-viral illness (lousy name: Myalgic Encephalomyelitis) & what is colloquially called “long C0vid” have become awkward epidemic cousins:

More awareness and funding recently but results & protocols? nah

The Atlantic: Long COVID Has Forced a Reckoning for One of Medicine’s Most Neglected Diseases

Only a couple dozen doctors specialize in chronic fatigue syndrome (ME/CFS). Now their knowledge could be crucial to treating millions more patients.

By Ed Yong

Also note: “ME/CFS involves a panoply of debilitating symptoms that affect many organ systems and that get worse with exertion.” sheessh

Further, blood flow to frontal cortex of my brain is reduced & immune system is fighting “everything all at once” without knowing what to fight (if that makes sense) manifesting in “brain fog” which, beyond confusion can lead to depression, especially coupled with sleeplessness :(

For a year, treated at a Okayama University hospital infectious disease program which began as a Long C19 specialty clinic and basically became a MECFS specialty unit. Taking a different approach then Drs in US/Canada or the Ayurveda treatments in India, Nepal, Lanka.

And, the treatment protocols gave me a real boost (including weekly cocktail injections and traditional Chinese medicines amongst other specific “sniper medications”) which got me going enough to do the #BCInvasion for which I am incredibly grateful.

However, the onset of this “bonus infection” in early hours of Sept 3rd have tumbled me back down the hill staring at the beginning of the game board. Didn’t *seem like* C19 as not problem with throat or respiratory systems but terrible fever, incredible pain & dehydration.

I’m mostly saying this for the record and my diary and memory after another sleepless night. Also, as a note to some wonderful folks who say “it’s just like a cold or flu” but alas, my situation is *much more* complicated. I didn’t ask for any of this & used to be invincible (well here and there, i have dealt with a consortium of medical conundrums, mostly around my guts which is *unsurprisingly* on point #gutbrainaxis.

And, following the erstwhile “community” around my illness, seeing so many people dealing with #LongCovid turning into #MECFS and fear I’m kind of taking the opposite route with this *newfangled virus* adding to my already dangerous coterie of mysterious infections. #pwME

For now, my darlings get up and about – last night I suggested a few small tasks / activities we could do together but the reality is: I’m here in bed, can’t watch anything, so listen to guided meditations for hours + brainwave stimulations, sometimes audiobooks & pods.

I’m just at my breaking point so thank you for noticing me. There’s never a great time for something like this *but* just got new routine down for picking up IchiStan from his new forest preschool riding the bus > old time trolley tram together as wife goes into busy season :(

for this guy, all the time

Again, I’m not sure why am saying this besides floating out to the universe that “yes, I am scared but somehow I will survive”. I don’t expect sympathy, empathy, advice or anything… Just needed someone to talk to. {I have asked hospital for a referral to a psychiatrist}

just looking for a spark

And in my feverish waking dreams comes forth every lousy situation & bad memory of my life. Yikes! So: If I’ve ever said a cross word to you, not showed up to support you, displayed my insecurities in an obnoxious manner, acted a jerk, misled in anyway etc.

Please forgive me. I am doing my best / better every day.

i wanna be your pal

PS So 3-1/2 years into C19 and the medical response is either of: a) take some ibuprofen, hydrate and rest; or b) go to the ER if it gets really bad; or c) some dubious medication that may or may not be reliable / available.

Is there something missing? Pardon me, just frustrated

Diary: emerging, again (maybe) hermitude / so tired

tired, skinny – waiting for bus,

Evidence for the curiosity seekers: I’m still here, alive…

Left the house for the first time in 10+ days (previous was a big hospital day) somehow amidst my hermitute, after 3+years got “the thing” laid me out badly with feverish hallucinations, debilitating pain, confusion, tears and sleeplessness {Sidebar: keep in mind that with my illness #MECFS I carry a massive viral load and a big legged immune system which has been constantly fighting this for 10+ years and also, the symptoms evidenced without the usual “scratchy throat, lack of smell and respiratory issues” so was a bit of a bewildering situation and very very much not good, not at all} … and then of course, the darling duo joined in on the fun… They are starting to bounce back because they’re invincible but tough seeing my normally intrepid wife battling through and are excitable cheerful boy we just started a new preschool program burning up with a 40° fever.

I am several kilograms accidentally trimmed up as really hard to keep food down and no appetite and so rolling like a zombie – bewildered, bothered, befuddled and just worn out of it all.

August got really weird with some unexplained and unexpected catastrophes, remarkable wife rolled with it all because she’s brilliant and a rainbow. Ichiro enjoys our spontaneous evacuations for a few locations as it meant trips to dinosaurs, beaches and pools.

I played along with my ukulele and tried not to be too grumpy as my precious batteries drained into oblivion… and made a few friends along the way.

Anyway, this is my usual picture of “waiting for a bus, wearing a hat and a mask trying to keep it together but losing my equilibrium & sanity inside” add it to your nft collection

PS our house is now set up for solar power including battery and selling back to the grid. Hooray for semi self sufficiency!

And yes, I keep sending out postcards and other little treats so I’m doing something right, right?