Tag Archive for: trigeminal neuralgia

COVER

Period of Change

Undergoing a period of change: I had surgery, I got published and I went on vacation. Plenty of new music reviews in this episode.

A word

What’s The Matter With Me? Podcast is sponsored by Hoppin Hot Sauce. Order it on Amazon.

JWH Live!

Writings By John Winfield Hoppin is live, because my editor said I needed a writer’s website. I think it’s pretty nifty..

Selfie Edict

selfie

Subscribers get the selfie for as long as we all live. It’s a lifetime subscription

Shout outs

Shout outs to Marchandspetrat, hockey s-poster living with MS

Shout outs to Rocky, Cousin Eric

Gotta write up questions

Upcoming interview subject Dax Pierson

Shout outs to the Sandman who turned me on to James Wavey Snowy Beach, which was added recently at KFJC.

Psychedelic hip-hop from San Francisco

Publication Dream Comes True

I was accepted on a piece of writing, and for the first time I made a signed agreement. Follow JWH Live! to hear more about the writing.

In the days before surgery

In the run-up to surgery, in a lot of trigeminal neuralgia pain, I increased my dosage and I felt like it was too much. Trying to even things out, I reduced by 25% overall, and it helped return me to the land of the living.

No coffee, no ibuprofen.

On a day when I would usually be recording, I went to the hospital to have surgery, my third RF Rhizotomy and fifth neurosurgery on my trigeminal nerve overall. I had two MVD (microvascular decompression) surgeries to begin with. Recovery is much easier with rhizotomy. MVD literally bores a hole in your skull, and it takes a lot of recuperation to heal. Hospital stay from rhizotomy can be as short as a few hours.

New tunes

In advance of surgery, maybe to take my mind off it, or to give myself something to look forward to, I bought some tunes.

Opera Glossolalia

Robert Ashley is a composer of 1980s opera. There’s a lot of talking in the libretto. The gatefold record comes with a cool book with photos. I really like the Recital label because they have interesting packaging. The record is one of 350.

Instructions?

This record is like sound art, but at the same time it’s a record. I’Layered, specific, related to site. Like getting a bunch of jumbled-up instructions for a treasure hunt, cryptic. Edition of 200.

Chewing Gqom

Gqom is known for its beats which have a minimal, raw and repetitive sound with heavy bass. It is mainly described as having a dark and hypnotic club sound. The style of beats does not use the four-on-the-floor rhythm pattern which is often heard in other house music.

“Gqom” Wikipedia article

Digging this record – I’m new to Gqom, but I like it. The release is by three different DJs, a triple EP.

This is far out. File under extreme vocal performances. The feeling is metal, but the sound is electronic. Tense, spastic. Questionable in a good way, challenging material.

Numb

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Now I’m back from surgery and my face feels different. Talking and eating and I’m sure other things that I’m not noticing are affected. Familiar disassociation after surgery.

It’s a matter of deciding how I feel about the things that are different. First, I have to accept them.

Updating the map

After surgery, it takes time for my body to properly calculate changes in sensation, and adjust the body’s size map accordingly.

In tune

The piano is tuned

Out on my own

Drove to Oakland by myself and went to a couple of friend’s houses for about 3 and 1/2 hours. It was the first time in 16 months.

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Chapter List

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In “Drugged Out,” a short episode featuring wine delivery, toilet paper shortage and trigeminal neuralgia pain medication.

Long Time

Subscribers get the selfie for as long as we all shall live. It’s a lifetime subscription

Green fluid

Cuts in my hands have been getting infected and filling with green goop

In Our Cups

We got the wine delivery, man, and the wine deliveryman was in his 20s, maybe his mid-20s, and he was really upset about global warming. “Things aren’t l really pleasant anymore,” he said.

I felt for him. “I feel for you,” I said

Toilet Paper Shortage

We still have a case of Bulgarian toilet paper that has no perforations and ripping it feels like tearing up someone’s college application, or well-qualified resume printed out on nice paper.

Remember back in 2020, when there wasn’t toilet paper? We bought a case of Bulgarian toilet paper and it was like riving a sheet of Bristol board to rip a sheet off. There were no perforations, it was 80% normal size so it didn’t fit on the roll,

Thing I Know

I watched the “Taylor Swift: Eras” movie with Koko, so I know about Taylor Swift now. Not sure what, but I know it. The movie is long, but not as long as “Killers of the Flower Moon.” She gets into slang patterns thata made me uncomfortable. To get it going, I had to figure out my Disney Plus login credentials, and that, in itself, is a big bonus.

Electric Wire Buried In Flesh

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I’m drugged out!

I experienced severe face pain once before bedtime, and then many times (a couple dozen?) after 4am. I cut out coffee, ibuprofen and started going up on my medicine that day, settling on twice of my usual dosage. That was too much, and I became extremely drowsy and experienced visual, balance and energy side affects. Eventually I settled around 175% of my usual dose, which. for the moment, is keeping the pain away and limiting the worst side effects.

Surgery is next week, my third RF rhizotomy. I knew this treatment could recur and that it was not necessarily permanent. Let’s hope the third time’s the charm.

Chapter List

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Welcome to “Can You Eat Blood?” the first episode after a break for a few weeks. I had trigeminal neuralgia face pain, so I took a a couple of weeks off. I think AI would say that these are bunch of unrelated thoughts.

Shout-outs

  • Shout out to the poet Joe Imwalle who called me to thank me for sending a link to his linktree while at the same time insinuating (correctly or not) that almost no one listens to my podcast.
  • Joe played guitar in my high school band and now he’s a published poet
  • Shout out to Jeremiah Jahnson who gave us a shout out on KFJC, Saturday morning at 8:30
  • Shoutout to Hoppin Hot Sauce

Gray room

  • We went on a date at Yonsei Handrolls because the movie was too long to do otherwise

What To Do

  • When you have MS people are alwaays sending you scholarly articles like this one

Caramelized shallots

  • Chicken and pasta with caramelized shallots

Thanksgiving

  • Thanksgiving is for 14 this year
  • Thanksgiving menu

5% salt

  • I wrote the sauerkraut recipe for the school recipe book

I can breathe again

  • The espresso machine is back

No Swap

  • We’re taking a break from the Booze-Only Yankee Swap this year

Face on the fritz

  • My face is bothering me due to the storms in the atmosphere
  • Unfortunately I couldn’t eat dinner with my family
  • I had a scrambled egg on some rice so it’s not like I’m dying

Turkey Brain

  • A week away and the Thanksgiving meal took over my mind
  • I hope that I will be in the clear and so I can enjoy eating the meal and not be in fear
  • I’m put in the meat order after trying to put it in back in October and they were like, “We’ll do it next week.” I’m either super early or coming in in the nick of time

Cool hipster shoes

  • The guy at the mobility shoe store asked me what kind of shoes I want and I said I was a hipster and I was cool and he said so you want dress shoes?

Too Much Blood

  • Jan hasn’t been able to smell anything since he was 18
  • Nami drank Jan’s blood
  • But at least she didn’t drink her piss

Rejection

  • Uniform Rejection of All writing submissions

Disability studies

Mysterious note

  • “Not just the bad stuff but the stuff I thought was really good”

Washed up

  • In a discussion of popular music John John told us Lady Gaga is washed up
rolling around the TL cover

Welcome to “Rolling Around The TL” on the What’s The Matter With Me? Podcast

Lots of people use wheelchairs in San Francisco’s Tenderloin district, a pretty rough area between Union Square and Civic Center

Shout outs

  • Shout outs to rocky
    • she’s listened to every episode
  • Shout outs to the people listening through the past episodes
  • Send me a n email via the contact form and I will give you a shout out that is quite possibly the best one you’ve ever received and the maybe best that you ever WILL receive

Dad Butt

  • Dad butt-dialed me again

Travels by wheelchair

RF Rhizotomy Number 2

  • Had trigeminal neuralgia face pain 5am Wednesday morning & had more drugs,, surgery one day away
  • I had surgery and have been clear from major pain since then. But I am still on pain drugs.
  • My nose has triggered some zaps but they are lesser in intensity than they had been, with the caveat I’m still on some medication

I Can Go Down

  • My AFO brace is broken and it’s very hard to walk.
  • I have to walk all on my heel, and if I put my weight on the outside of my foot or on the front Of my foot I can go down.

Rolling Around The TL

ride in rotary park
  • I went to the deerhoof show in my wheelchair
  • Rolling in the TL, I saw a lot of wheelchairs, but mine was the only one that was electric
  • We ate at Osha Thai which was accessible, a blast from the past, and sadly due for an upgrade
  • We got into the car after midnite- Rock & Roll!
  • I called ahead to the Great American to let them know I’d be coming in my chair, they reserved me a table behind a pillar against the wall. It had poor visibility, but decent sound
  • I started focusing on the audience. Nowadays people wear their pants wider and hemmed higher

This Week’s Selfie

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Rolling Around The TL Selfie

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Welcome to “Poop Burrito” on the What’s The Matter With Me? Podcast

The tortilla is fine. Maybe you can save the lettuce. In a poop burrito, you have to go through the layers.

My trigeminal neuralgia pain came back and so this episode is a bit like a poop burrito. I was in the hospital last weekend, and they changed up my medications to get me out of pain. A couple of days ago I saw the surgeon and I’m going to have another rhizotomy next week.

Big Shoutouts

  • Shoutouts to Nathan. His message: “Just wanted to say congratulations. On April 28th the what’s the matter with me Podcast will be 6 years old! Keep it up buddy. And Hoppin Hot Sauce is the best sauce in the world.”

I did one thing right

  • You couldn’t sing to March’s theme song candidate

Speaking the unspeakable

  • You are not allowed to call yourself a Bohemian– It’s not a thing you can call yourself. Lazy hippie is more like it

Round and vacant

  • The security check said, “Click all the pictures with a donut” but it seemed like some of them were bagels

I Was That Guy

  • When my family was in Japan, the kitten didn’t come in one night. Then, I got in my wheelchair and rolled around calling for my cat.

Inequality

  • Of the remaining Beatles that are still alive, we have the best one and the worst one. JK *ducking*.

Boil Water Warning

  • No one takes Cam Likely’s phone calls

Smooth sounds

  • I want to hear elevator music, and I walk out and my wife is playing some violin concerto

Competition begins

  • It’s little league baseball season again and the game is a little more recognizable, pitchers are starting to pitch better, more towards the plate

Sonny in Europe

  • Its 1959, and Sonny Rollins is going to Europe. Back in the states, he’s jamming with Bob Dorough & Mose Allison at the jazz loft. Then, he goes on sabbatical and climbs onto the Williamsburg bridge to practice without disturbances.

Visual Rhyme Time

This Week’s Selfie

poop burrito selfie
Poop Burrito Selfie
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It’s coming.. I can feel the gravity.. Space-time is starting to warp, because Thanksgiving is happening soon.

Welcome to What’s The Matter With Me? Podcast S6, Ep. 42 “Thanksgiving Warmup”

In this episode, I’m getting ready for Thanksgiving, roasting chickens, buying barbecue parts, checking out tactical wallets, and more. I went to my friend’s birthday party and I managed to hang around and put in a pretty decent appearance. Disabled culture this week: Alice Wong, Leon Fleischer, and Daniel Romanchuk.

  • Kayaking through the wastewater outside the tomb of salt Bae
  • Had a buddy over and we had Mississippi roast and watched the World Series game six between the Philadelphia Phillies and Houston Astros

Birthday Party

  • We went to a friend’s house for a birthday party.
    • It was outside and it was on some dirt that had been rained on, so it was soft. It was not as easy to stand to stand on as concrete.
    • I didn’t use my wheelchair And I did pretty good
    • I saw the guy who owned a bar and we discussed what I’ve been drinking
      • the last time I saw him I was in a wheelchair and this time I was standing using my cane
    • I archived my trigeminal neuralgia journal – i’m off meds
    • I was visiting with the birthday ladies family And they gave me a slice of cake and a fork and a little paper plate and I tried to eat it on my lap and I kept throwing pieces on the ground on accident so I just gave up it was a pretty good cake and remarkably it was in the shape of an armadillo

Disabled Culture

  • Randey the barber, with an e
  • I made sausage pasta
  • Putting together Thanksgiving

New Music

The 12th Annual International Sound Poetry Festival Cover

After years of preparation, Recital is proud to present The 12th Annual International Sound Poetry Festival box set. Held in New York in 1980, this was the last festival of the pioneering sound poetry series started in Stockholm in the 1960s. This ambitious document holds nearly five hours of audio from 30 artists. A 240-page book with biographies, texts, and artwork from each artist supplements the edition, including program notes by Charlie Morrow and Sean McCann.

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NO MORE PAINKILLERS: After successful surgery, I’m off of painkillers for the first time in seven years.

Welcome to What’s The Matter With Me? Podcast, “No More Painkillers”

It’s a big day for me because I’m finally free of trigeminal neuralgia pain after successful rhizotomy surgery last month. It’s been seven years that I’ve been battling the disease and it feels like a major victory.

  • Shoutouts to Jersey Girl who told me about the Superfest Disability Film Festival happening in Berkeley & San Francisco later this month.
  • Claude Hopper wrote in to say he had a Chubb Rock record
  • Year Of The Tiger by Alice Wong
  • I sent Original Flavor to Amazon for restocking
  • Help support the kids’ school fundraiser by using this link to look through the catalog. for chocolates
  • ICYMI: I recommend the Gary Cannone Interview Special
  • I’m off pills and in withdrawal again – but its GOOD- I can go to my right better and stand on my own 2 feet’ easier
  • I am tolerating alcohol a little better so i can split a bottle of wine with dinner
    • Knock on wood- famous Last words- throwing triple hexes over my left shoulder
  • I am not adult enough to appear in a zoom meeting
  • Musk is back at it
  • A picture is worth a lot of these
  • “Last night for dinner” Journal: Cauliflower pasta
  • We’re going to the ranch

This Week’s Selfie

No More Painkillers selfie
It’s wild
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I am getting ready for surgery.

Welcome to the What’s The Matter With Me? Podcast Season 6, Episode 34, “Pre-op”

In this episode I’m getting ready to go into Stanford next week for surgery to help with trigeminal neuralgia. In the meantime, the kids are playing soccer, there’s heat dome, and the podcasts that kids are making.

  • Shout outs to mom who wrote in to make a correction that she was not actually a Registered nurse
  • But I tell people that she was so so I guess if you’re one of them watch out you’ve been fooled
  • geographical shout outs
  • My daughter Told me she doesn’t understand the rules of soccer.
  • It was been really hot in California because there was a heat dome,
  • You heard it here 1st
  • It’s been over 90゚ so I’ve skipped 3 soccer practices. It was over a 100 for 1 of them so we all skipped that 1.
  • I’m reminded of the episode where it was really hot in East San Jose and I discussed how it was like my thoughts bubble through my brain like mud
  • It’s a lot cooler in San Leandro and I am surviving this heat wave a lot easier because I live in a shady area That is Naturally cooler
  • I think that is a big value of this house that I stay away from Uhthoff’s effect
  • My thoughts don’t get stuck in my brain, instead they come out, case in point
sent in by Claude Hopper, Anti rock stacker image
  • In the morning my wife says Hi Like a deflating ziploc bag And sad trombone. And I’m like Hi whats up in a loud stern voice and she answers nothing! In a golem voice
  • Snapshot of our relationship
  • We laughed talking about it in the car after we dropped the kids off at school. how we come at it different
I ran a poll on Twitter and it got one reply and I wasn’t allowed to Vote
  • Seemed like It was 100 degrees all last week and it’s 73 today
  • I avoided Uhthoff’s effect. The Saturday games were on artificial turf. It was steamy out and still pretty sunny. I used my wheelchair. I wore a panama hat bc i had a family event
  • Saturday tripleheader- the kids played soccer games. koko was first in hayward, then john john in union city, then we went to san jose for a family BBQ
  • i had my preop- next week they’ll stab my face and fry my trigeminal nerve. i think they might keep me awake
  • if it is successful ill be able to come off all these pain meds. its called titrating where every week ill come off one more pill. itll take a few months to get off all of them but im cautiously optimistic
  • been getting into the Delaware Dan podcast. its very unorganized and im not sure if it has a topic or not./ i found it by searching google podcasts for the word cassette tape. you can really go dfown a rabbit hole. kids are makiung podcasts for themselves. also shoutouts to roast of your teenage self podcasts
  • these are podcasts by young people and its great. im anm old person who makes a podcasts about nothing or if you have to say its about anything, its aboiut having a horrible disease and crazy surgical procedures. its probably better and more accurate to say its about nothing
  • wrap up
  • kahlil gibran on children

This week’s selfie:

pre-op selfie
Radiant in yellow
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I went for a walk with Koko and I got more than I bargained for

Welcome to Season Six, Episode 33, “Wheelchair Tipped Over

My wheelchair tipped over. I was on a walk with my daughter but it didn’t seem to scare her too much– we went to the swings and she had a good time.

  • My name is John Hoppin, don’t wear it out.
  • My wheelchair tipped over
deplatforming hits home

Death of a Statesman

  • My wife was like, “I don’t think I knew that Gorbachev had died. I was like, “We did that last week. That’s why you need to subscribe to What’s The Matter With Me? Podcast. So you don’t miss anything.”
  • Our listeners know about everything

Organic Hellfire

  • I had the worst trigeminal neuralgia pain – from my mouth up to my eye around my eye out to my ear. Spasming organic hellfire that sent me scrambling for more medication and sobbing under the covers.

#CIL50

  • #Cil50 is happening in October at the Berkeley Center For Independent Living.
  • I’m interested to get a booth to promote What’s The Matter With Me? and sell Hoppin hot Sauce to the disabled community.
  • I was at a friend’s house and they were grilling burgers and the podcast came up because we were talking about Cil50

Prediction?

  • Covfefe was covid

Security

It Happened Fast– My Chair Tipped Over

  • My wheelchair tipped over in the park
  • I was counting critters with my daughter Koko and wasn’t paying attention
  • The wheelchair bottomed out when it went off the edge of the concrete where there was a couple inches of gap between the dirt and the concrete
  • I was ejected from the chair and ate it to some degree- just a couple band-aids were needed in the end
  • Bystanders came running and helped me up and got me back in the chair
  • My daughter ran away when the people came running to help me, but she seemed to realize they were helping me. It didn’t seem to scare her too much– we went to the swings and she had a good time.

This week’s selfie:

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It was 95 degrees out
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Doors are being installed at our house- I went to see the surgeon- I had a nightmare about Thanksgiving.

Welcome to What’s The Matter With Me? Podcast Season Six, Episode 29, “Doors Of Perception.”

In this episode, the door men are at my house installing the Doors Of Perception. They are noisy, but because I’m feeling better, I don’t have to whisper anymore. I was still feeling pretty tough yesterday when I went to see the surgeon to discuss RF Rhizotomy surgery.

“If the doors of perception were cleansed every thing would appear to man as it is, Infinite. For man has closed himself up, till he sees all things thro’ narrow chinks of his cavern.”

William Blake, The Marriage of Heaven and Hell

Shout Outs

  • Geographical shout outs
  • Shout outs to rocky
  • Shout out to Mom who reminded me that it’s been 2 and a 1/2 years since I have MVD micro vascular decompression surgery not 1-1/2
  • Shout outs to Doctor Shuer, who’s already operated on me twice. Isn’t that enough? We’ll see, just stay tuned..

The Church

  • Mom was trying to get me to be thankful for that time, and I am, but I also would appreciate my surgeon putting an end to this disorder and putting me out of pain. Trigeminal neuralgia is very painful and causes many who have it to commit suicide by how painful it is and I just don’t ever want to be in the place I was before or even being close to it.
  • Trigeminal neuralgia took me to the house of pain, where I went into the white hot room of pain and took a seat on the sofa of pain.
  • While I am thankful. I need to get this done with for my family. Shout out to Mom, she’s a Catholic and was taught to be thankful for everything in life and I kind of agree with her. I must admit I can be sympathetic to that. Because everything is here for me and I didn’t do it and I should be thankful for it- OK fine fine

  • Dear God, please let’s segue

Pronouns

  • I think it’s fine to call someone whatever they want to be called.
  • Sanleandrido, Sanlandrida, Sanleandridx.

  • Getting thoroughly cursed out is triggering and toxic that’s what it’s all about.

Thanksgiving nightmare

  • I had a nightmare that it was Thanksgiving and the butcher shops were all out of turkey.

The Cure Is: Lemons

  • One of my friends sent me 1 of these “they’ve cured MS in Canada” Messages and it’s totally unprovable and not linked to any study And it’s kind o,f like the MS cure Where you eat a lot of lemons. Generally I ask my family not to send me MS cure ideas that are like that. I believe in peer reviewed studies And without that you’re kind of just shooting in the dark.. So generally I ask people not to send me things that are unsupported by scientific study.
  • But frankly it was nice to be thought of and I told the guy I appreciate it. So how’s that for mixed messages?

Hot Mops

Dr. Shuer

  •  I went to see the doctor earlier today but before that at 8:30am i had a CT scan so I didn’t eat breakfast.
  • A CT scan is way chiller than an MRI- you’re still mostly in the roam because the hole that you’re in is way bigger
  • In MRI, you are inside the machine- for CT, it’s not even like you’re inside something. MRI has a 50-60CM aperture. CT scan has an aperture of 75-85cm. CT is shorter and quieter.
  • Then we had 45 minutes between appointments so i got the peanut butter Jamba Juice quick before I met the doctor. to get calories because I didn’t have breakfast.
  • My doctor and I discussed RF rhizotomy: they would put me to sleep, insert a needle into my face, then wake me up, send electrical signals through the needle to verify the right nerve, and then blast it with the high frequency RF to deaden the nerve.
  • It’s a short procedure but its freaky. were going to schedule it and if I don’t need it I wont have it
  • The Story of signing the consent form and how I wrote my signature.
  • We talked about how it could reduce my use of pain medication.

Baby Wants To Drive

  • My wife and I talked about how I cant drive on my current medicine dosage. That is upsetting, it’s like I’m a baby. I want to drive, but I can barely get around my house. It’s a loss of independence. I don’t know how I wont go stir crazy.

Los Pericos Vibe

  • We ate at Los Pericos on East 14th St. Nami had the vegetarian burrito & I had pozole. It was pretty good. It came with radishes cabbage and onion to dump in and a lime to squeeze over everything and it came together nicely.
  • I used my wheelchair to order the food and to eat. it was the first time I did that. it was on a pedestrian mall on a Tuesday at lunchtime. It was mostly empty, except for a guy who muttered to himself. He would come up in volume as we dropped down. He was talking about real motherfuckers and fake motherfuckers. He sounded upset about it. in a sense he was really killing the vibe. in another sense its a free country isn’t it? one mans vibe is another mans jibe! then his friend showed up and he was a lot happier. but then they were catcalling women.

BK To The Fullest

  • If you woke up today and you were an adult male named Brooklyn.

Part about cursing

  • Sometimes I deserve to be cursed out and sometimes I don’t and when I don’t, maybe I should just walk away and hope for better next time. Perhaps I could avoid ridiculing the person trying to come at me. which is what I often do because I think I’m not afraid of confrontation.
  • Maybe I should just take a wait and see and find out whether it is a pattern, whether I have a toxic person on my hands. Maybe there are extenuating circumstances.

This Week’s Selfie:

selfie
“If the doors of perception were cleansed every thing would appear to man as it is, Infinite. For man has closed himself up, till he sees all things thro’ narrow chinks of his cavern.” ― William Blake