there but for the grace of God go I

📍Japan ✝️ Ephesians 6:10-17

[innko]

water coming out of the tap warm season

[innko]

[innko]

I was gonna be writing my big driving school update post on here since I hadn’t gotten the chance to write about the school and my disability accommodations but…

I just finished up antivirals and low dose steroids for the third shingles outbreak I’ve had in 2 years. The first one in June 2024 paralyzed my leg after an 8 week diagnostic delay, and the second one in October 2024 with a rash that spread from my eyebrow to my shoulder ended up leaving me with post herpetic neuralgia and a weak arm/hand, the full extent of which I did not discover until I started driving school.

This time, the it was the same left side of my face as October 2024. The night of June 4, my face suddenly became weak and the next day I slowly realized…this is not my residual damage flaring…by that night I mostly lost my sense of taste too. I’ve had mild ear pain and dizziness too, but I’m on Valium for my paralyzed leg’s spasms, so I think the full extent of that has been masked. Got the rash on my hairline and my neck. I went to my usual doctor on June 6 but she only gave me antivirals and no matter which AI I asked all of them insisted facial weakness requires steroids as well so I got some at a neurology clinic on June 8…so low dose I was scared they might not work, but my facial weakness started improving on them and I still got the classic irritable roid rage lol.

Now my facial weakness is a lot better and I think my taste is starting to come back, but healing nerves are funny. I’m getting weird metallic tastes in my mouth and lots of tingles and zaps in my tongue and corner of my mouth.

I had to cancel one of my driving lessons but I was able to return sooner than I thought. The pickup van comes really close to my flat and they always make sure to bring the car close to the building/take me back to the building so I don’t have to walk much…but I tried to go out to take some photos in the neighborhood on June 13 and was only able to make it to the shrine two buildings down.

I think my facial strength will mostly return and I’m hoping my taste does soon too. Praying for no permanent neurological deficits this time. I’m going to try to get supportive therapies like vitamin b12 added to my usual IV neurotropin and ATP at my next appointment on the 22nd now that I’m in the crucial nerve healing phase.

I also have a uni hospital referral…because this pattern is so unusual and severe it requires better management. They might never be able to find out why I’m so vulnerable to this virus but maybe they can come up with a better preventative strategy like prophylactic antivirals. I went to a hand orthopedist about getting OT for my weak hand and he insisted that I get proper hospital level management first because he doesn’t want me to just keep collecting permanent deficits to be in perpetual rehab for. He was blunt but he was the only doctor who clearly drew that line in the sand instead of ignoring the reality that this…is bad.

[innko]

so this outbreak was prolonged and i just finished a second course of antivirals because i kept blistering further and further down my neck and eventually my shoulder again and i was scared it might try to more of my arm again…some really traumatic shit happened at my previous primary care (pain clinic) and the neurologist she referred me to but i found a new great doctor in ebisu the next day who gave me the second course

i generally don’t rash severely but right now i’ve got a big nasty vesicle on my neck and i’m making my mom look for my old summer scarf i haven’t seen since i moved here lol also at least i can’t get the hand mouth and foot going around tokyo since fighting one virus = you won’t get another

[innko]

ebisu, i’m starting to really like this neighborhood

[innko]

ok so my life sucks right now and i went on a bender last night but i just found out a friend from church got engaged and i’m so happy for her and told her i’ll take her pics, help her plan the wedding, etc now i feel like no matter how sucky things are for i have some good to do for somebody throughout the next several months or so

[innko]

i’m just chronically operating at a stress level where one thing will push you over the edge into drinking and nicotine again y’know

it was hard enough to be an ethnic minority in this country and i drank back then. now i’m a cripple on top of that too.

i still remember back when i was healthy i was was on a train to kyoto from osaka and something bumped me and it turned out it was just a baby’s foot…the mom apologized which was a surprise for kansai where people are constantly bumping into each other then i saw the father was a white man and all i could think was that baby’s gonna have a hard life

[innko]

drunk and a light vanilla snus pouch in my mouth because this week is just too fucking much

called my former situationship too under some sort of we still love each other but we can’t but we understand how fucked life is kinda thing

[innko]

day 2 of my church’s seminar

the guest pastor/speaker gave a sermon at my church last year, and it was what gave me the strength to be able to walk past the hospital that failed to diagnose or treat and ultimately abandoned me to have my leg become paralyzed

dry bones live

i got to speak to him and thank him face to face today 🤍

[innko]

lol not this man in the train station elevator being so drunk he forgot to press the buttons

thanks for holding it for me tho 😂

[innko]

i made it to a seminar at my church this evening and was able to taste the orange juice…the flavor actually lingered too, didn’t quickly disappear like the few other things i can taste. and it was so good to laugh and smile with everyone when just a couple weeks ago trying to hold a smile would make my face twitch and spasm…i’m not fully recovered yet but being there is healing 🤍

and despite it being a friday night (notoriously horrid trains) a lady with a giant bag of flowers who was in the priority seat let me have it immediately without me asking 🙏🏻 plant people are the best people

[innko]

it’s kinda a touristy thing to do and i am a citizen and a resident but i lowkey want to get a cardigan or something and do the custom embroidery thing at uniqlo

[innko]

ugh the driving school pickup van driver today was a guy i’ve never seen before and he was cranky crab apple it takes me some effort to even get into and situated in a van and i barely got a chance to put my cane and bag down before he was like PUT YOUR SEATBELT ON hold your horses man i was just about to

and he drove so rough on the kinda hilly curved farm backroads near the school i feel kinda queasy now …i’m not all that prone to motion sickness in general but shingles outbreak #3 that i am currently recovering from did affect my ear nerve

now i gotta go take my lesson feeling a little ill

[innko]

i got so sick i was dizzy and nauseous and i’m on the S curve and the crank lesson and it was terrible i hit curbs so many times and even the poles once for the first time (i never hit anything but a curb on the course before) i thought at some point might need to get out of the car and puke and the instructor asked if i wanted to not do the lesson but if i cancel i get charged (but have the plan for unlimited lesson retakes) so i just had to push through and keep going…. i even got to the point i was talking to myself muttering “can’t stop here gotta keep moving” in the regular lane after exiting the S curves and cranks…i even talked out loud to the stoplight on the course i was like “please stay red please let me take a little break”

i said it very politely and quietly like “i don’t want to be a pain in your ass and complain but could you please tell this guy to take it easy on the back roads because i don’t normally get car sick and he made me real sick and my lesson very difficult…” to the school staff

it was the same guy on the way back too 😭 on the way there i was directly behind him so i couldn’t see how he was steering but i could on the way back and sometimes he was gripping the wheel like this???? or sometimes barely gripping it at all???? how the fuck did this man get a class 2 (passenger transport) license????

[innko]

ugh the driving school pickup van driver today was a guy i’ve never seen before and he was cranky crab apple it takes me some effort to even get into and situated in a van and i barely got a chance to put my cane and bag down before he was like PUT YOUR SEATBELT ON hold your horses man i was just about to

and he drove so rough on the kinda hilly curved farm backroads near the school i feel kinda queasy now …i’m not all that prone to motion sickness in general but shingles outbreak #3 that i am currently recovering from did affect my ear nerve

now i gotta go take my lesson feeling a little ill

[innko]

I was gonna be writing my big driving school update post on here since I hadn’t gotten the chance to write about the school and my disability accommodations but…

I just finished up antivirals and low dose steroids for the third shingles outbreak I’ve had in 2 years. The first one in June 2024 paralyzed my leg after an 8 week diagnostic delay, and the second one in October 2024 with a rash that spread from my eyebrow to my shoulder ended up leaving me with post herpetic neuralgia and a weak arm/hand, the full extent of which I did not discover until I started driving school.

This time, the it was the same left side of my face as October 2024. The night of June 4, my face suddenly became weak and the next day I slowly realized…this is not my residual damage flaring…by that night I mostly lost my sense of taste too. I’ve had mild ear pain and dizziness too, but I’m on Valium for my paralyzed leg’s spasms, so I think the full extent of that has been masked. Got the rash on my hairline and my neck. I went to my usual doctor on June 6 but she only gave me antivirals and no matter which AI I asked all of them insisted facial weakness requires steroids as well so I got some at a neurology clinic on June 8…so low dose I was scared they might not work, but my facial weakness started improving on them and I still got the classic irritable roid rage lol.

Now my facial weakness is a lot better and I think my taste is starting to come back, but healing nerves are funny. I’m getting weird metallic tastes in my mouth and lots of tingles and zaps in my tongue and corner of my mouth.

I had to cancel one of my driving lessons but I was able to return sooner than I thought. The pickup van comes really close to my flat and they always make sure to bring the car close to the building/take me back to the building so I don’t have to walk much…but I tried to go out to take some photos in the neighborhood on June 13 and was only able to make it to the shrine two buildings down.

I think my facial strength will mostly return and I’m hoping my taste does soon too. Praying for no permanent neurological deficits this time. I’m going to try to get supportive therapies like vitamin b12 added to my usual IV neurotropin and ATP at my next appointment on the 22nd now that I’m in the crucial nerve healing phase.

I also have a uni hospital referral…because this pattern is so unusual and severe it requires better management. They might never be able to find out why I’m so vulnerable to this virus but maybe they can come up with a better preventative strategy like prophylactic antivirals. I went to a hand orthopedist about getting OT for my weak hand and he insisted that I get proper hospital level management first because he doesn’t want me to just keep collecting permanent deficits to be in perpetual rehab for. He was blunt but he was the only doctor who clearly drew that line in the sand instead of ignoring the reality that this…is bad.

[innko]

i don’t usually add music to my instagram posts, but when i do, it’s a noah kahan song

[innko]

[innko]

i trusted the first thing that came up on google for time zone conversion and it turned out to be wrong and i missed a meeting and now i feel so bad 🥲