Tag Archive for: trigeminal neuralgia

Rolling Around The TL

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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

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  • 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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Poop Burrito

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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

An aerial view of waves crashing against a shore.
An aerial view of a field. A road runs through the upper right corner.

This Week’s Selfie

poop burrito selfie
Poop Burrito Selfie

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Thanksgiving Warmup

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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

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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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Pre-Op

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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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Wheelchair Tipped Over

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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 Of Perception

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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:

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“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

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The Whisper Episode

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I can’t talk at a full volume but I can whisper about Judy Heumann on PBS and Terry Wahls’ diet study.

Welcome to the What’s The Matter With Me? Podcast Season 6 Episode 28, “The Whisper Episode.”

In this episode, I can’t talk with my full voice because it makes my trigeminal neuralgia flare up. So I whisper, more or less. Go on a journey with me through a study about MS & diet, a talk by disability activist Judy Heumann,

LOL

  • One of my family was on social media saying “So there are reports of Bruce Springsteen tickets going for outrageous amounts of money. Isn’t this something he could control? I’m so confused.” and I was like “Bruce has had it and he’s tired of taking care of you babies. he wants you to pick yourself up by your bootstraps and get your own piece of the American dream LOL”
  • You can’t do that in 2022, people need the social media echo chambers things are too hard in society RN. LOL
  • At least you are still allowed to LOL

Get studied

This goes everywhere

  • Geographical shout outs: these words are flying around the world,.Thank you for tuning in

Schrödinger’s cat

  • Sometimes I feel like I can’t do anything, like Schrodinger’s cat. It’s as if the act of trying to do something guarantees that I can’t do it.

It’s bad

  • The pain in my face has gotten more intense. Thankfully it’s not throbbing, but the nerve is very sore. It’s intense enough that its fogging me up. I can only hope it doesn’t get too much worse before they insert a needle in my mouth and fry me. NOTE: It already has gotten worse.

Disability activist Judy Heumann

  • I watched Judy Heumann livestreaming on pbs books and I was totally gobsmacked by how great she is, as usual. “My work is to allow disabled people to feel proud of who we are … there is so much more work that needs to be done … to understand who we are … and our desire to be an active part of our communities.” “20-21% of the US population are disabled. 60 million people. Globally, 1 billion plus.”
  • Judy spoke to an audience of Girl Scouts and said: “You don’t have to accept ‘no.’ If you believe that ‘no’ is wrong, then you need to fight for your right. It may not happen quickly, but if you believe in it, you have to fight for it.”
  • The PBS Books Youtube channel is at https://www.youtube.com/watch?v=hRk-Tf8aUOI

Artist Gary Cannone

  • When I can talk again I want to do an interview with artist Gary Cannone.

Subscribe to get the selfie (and everything else)

  • The way you get the selfie is to subscribe on whatsthematterwithme.org. Collect them all, Put them in a special folder on your computer. That seems almost like an NFT, and seeming might be enough.
  • To get an email every time a new episode comes out, enter your email and get on the mailing list at whatsthematterwithme.org.

This week’s selfie:

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The Return Of Trigeminal Neuralgia

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Small electrical slashes and flashes come back

Welcome to What’s The Matter With Me? Podcast, Season 6 Episode 27, “The Return Of Trigeminal Neuralgia”

Small electrical slashes and flashes come back, but a lot quieter since I had micro vascular decompression

In this episode, the return of trigeminal neuralgia: TN discomfort came back. PLUS, Masonic Auditorium accessibility review, autonomous vehicles for disabled riders, and accessible furniture.

  • Great minds think alike, stupid ones too
  • I said last time that all my friends came over, but that was an exaggeration
  • people are leeching the thing, especially episodes about MVD
  • TN slashes: 2 on Tuesday 7/19, 5 on 7/20..
  • John John wants a year long vacation to Hokkaido
  • 6 Things Wheelchair Users Should Know About Autonomous Vehicles
  • Disabled representation on TV: “Best Foot Forward”
  • Burning Spear at the Masonic Auditorium: I ran into dr. Doug and he sat with @namihoppin & I. Then after the show Lurker & Lucky J – cool seats- way up but front and center.. used my chair. The Masonic auditorium was set up well for accessible patrons
  • Pottery Barn accessible furniture collection “Accessible Home”
  • Having small TN sensations when I drink or eat or brush my teeth. Had 1 at the Barrel House when I had a sip of beer 7.24
  • Had a couple on the deck. Swallowing a certain way 7.24
  • Had a handful for the day and 12 while brushing teeth. 7.25 twinges not pain exactly but more like mild electric shock
  • Planning to drop-off my espresso machine to be serviced in Berkeley aug 5

This Week’s Selfie:

the return of.. trigeminal neuralgia selfie
Feeling OK now

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MVD Surgery Update

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Two years after my MVD surgery, checking in with how I’m feeling. Also: tattoo ideas, gettin’ paleolithic, different chorizos.

Get The Whole Story: Please check the Microvascular Decompression tag page to hear all the updates about my MVD surgery.

  • last borscht thing: Matt came over and had lunch and he said “it was the best borscht I’ve ever had.” Nami was there
  • not like he’s Lithuanian or anything.
  • I think Lithuanians eat it cold
  • Steve was talking about white borscht
  • Shout outs to Nathan Mary Butters and Tibby- thanks for the catnip hot sauce
  • Very Stable Genius is a good neck tattoo
  • I went to reddit to see if there were any posts about Epstein-Barr causation and there was only one in the Multiple Sclerosis forum and the study was met with an ambivalent reaction
  • We had white beans, kale, and dry chorizo stew. i talked to the butcher about the dry chorizo — joe: “is it chorizo, or is it choriz?”
  • “I’m in recovery again” update to my 2nd surgery in January 2020 – meds- relapses- where I’m at now
  • in Omicron isn’t milder for everyone I canceled my dental appointment but i just had it. I wore two masks for the first time
  • At the periodontist’s office all the doors are open because Covid so you hear everything- gross!
  • Thank you
  • Printer Poem
CLICK FOR TRANSCRIPT

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