My name is John,

I’m 43 years old, husband, father, small business owner, radio DJ, podcaster, and I have Multiple Sclerosis.

I created the What’s The Matter With Me? Podcast to share what I’m going through.

Portrait

I believe in using the transformational power of creativity to achieve social justice. Joseph Beuys once famously claimed that, “Each person is an artist.” In the words of the Spanish poet Antonio Machado, “Wanderer, your footprints are/ the path, and nothing else;/ wanderer, there is no path,/ the path is made by walking.” My work consists of public interactions that create new conditions in the community.

I have multiple sclerosis and that affects my life and work in many ways. I am the host of What’s The Matter With Me?, a podcast where I share my experiences, challenges and triumphs as a patient with MS. The podcast develops my Disability Consciousness and bridges me with my caregivers, doctors, the disabled community, and community-at-large.

If each person is an artist, and we create the road by walking, then it is up to us to create the world we want to see.

Gary Cannone Interview Special

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Artist Gary Cannone was diagnosed with multiple sclerosis in 2013

Welcome to the Gary Cannone Interview Special

Gary Cannone Interview Special live and direct, in the fleshh, 100% active and happening. Thank you for tuning in to the What’s The Matter With Me? Podcast, the Godcast, the Dad bodcast. 💪🏼🎅🏼🎅🏼

Gary Cannone is a Los Angeles-based artist who was diagnosed with multiple sclerosis in 2013. His work examines being an artist with multiple sclerosis through his absurdist sense of humor. Gary grew up as an Italian-American in Chicago, and he was the drummer in a punk band, so its about that, too.

Interview 9/21/22

I had the chance to interview him and we spoke about his work, advocacy, and the experience of an artist with MS. Check it out.

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Body Horror

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I made it through surgery- artist Gary Cannone preview- Helen Garner on fate- awkward dinner party conversation.

Welcome to What’s The Matter With Me? Podcast, “Body Horror”

Cool episode! I made it through a surgery with all the hallmarks of body horror: zombie anesthesia, facial electricity and a burning nerve. David Cronenberg will be perfect to direct the movie version. Plus, artist Gary Cannone interview preview- Helen Garner on impositions- an awkward dinner party conversation.

  • We are running out of Hoppin Hot Sauce on the zon, because I misread a figure on the inventory report.
Gary Cannone
  • Gary Cannone interview preview
  • I want to learn to write hilarious poetry in Japanese but apparently that’s not a sensible idea

Some very dear friends of mine had a three-­year-­old son who was profoundly autistic. They didn’t know what was wrong with him, and there was no name for it back then. He couldn’t really speak, and he didn’t know any words, but songs would reach him where other things wouldn’t, and he had a pure little voice when he sang. It interested me to see how his parents lived around this huge duty that had been imposed upon them—­to see how an act of fate like that would scour you of all your triviality. You’d have to find something in yourself that was much deeper than what most ­people would need to find.

Helen Garner
  • Helen Garner on autism, about trivialities in the Paris Review
  • Chronic illness erases people- thank you for listening to the What’s The Matter With Me? Podcast, an anti-erasure strategy
  • I had RF rhizotomy surgery and I finished it
  • It remindeed me of David Cronenberg/”body horror”
  • I went through it and now it’s over
Grape Ice Cubes
  • Now I can chew gum without pain
  • I chew grape ice cubes gum
Farro
  • I went to Berkeley Bowl, and did a lot of maneuvering to get farro in bulk. I knew it would be pretty wild.
  • I went to a dinner party and I felt uncomfortable for reasons I do not fully understand
  • Friends, food, conversation. I think I am not used to it.

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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:

selfie
It was 95 degrees out

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Disability Consciousness

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I said something ableist to someone I admire

Welcome to What’s The Matter With Me? Podcast Season 6 Episode 32, “Disability Consciousness”

In this episode, I reflect on the time I said something ableist to someone I admire, the drummer in deerhoof, what I might say (or not) now that I’ve spent some time working on my disability consciousness. I hope I might come up with something better. Also, Botox, falling and the first law of success, “Do You!”

Disability Consciousness

  • One time I ate with deerhoof and I said something ableist 
  • Because I didn’t yet have disability consciousness

How it is in Hayward

  • How it is in Hayward across from El Pollo Loco…
  • It’s weird when the Garden Center is a cinderblock building with no windows

RIP

  • rip gorbachev – gorby – commie pinko
  • rip chowhound

Extra

  • I had Botox
  • It’s a lot of injections

Shout Outs

  • shout outs to Kevin at Under the cowl of MS. He mentioned What’s The Matter With Me? Podcast and Hoppin Hot Sauce in one of his YouTube videos. Kevin reviews comic books
  • Williams Sonoma reordered Hoppin Hot Sauce for the western region
  • Mention Hoppin Hot Sauce and What’s The Matter With Me? Podcast in any and all settings
  • shout outs rocky and claude hopper for technical support- as always, if you see something say something

Do You

Falling

  • I have been falling a lot. One time I was flicking the switch in the bathroom and i ended up facing the wall with my back to the toilet

Deerhoof Show

  • I want to go see deerhoof in San Jose at the ritz in October, on october 22
  • Should I take my wheelchair?
  • Do you want to meet me there?
  • They are playing San Francisco the night b4 but I like going to things in San Jose

Black T Shirt

  • I had Botox
  • It’s quite a lot of injections
  • The nurse talks to you and the doctors say “123 poke”
  • In my trapezius- shoulder area, in my pectoral area, in my bicep and forearm
  • Of course I was wearing a white tee shirt not a black one
  • Note to self: wear a black t shirt for Botox
  • The injections get stronger over a week and then they last about 6 weeks before trailing off
  • I showed them my puppet video In the kitchen
Happy Birthday Nathan

I said something

  • One time I ate with deerhoof and i said something ableist
  • I didn’t have disability consciousness
    • one time I ate brunch with the member of deerhoof at a cafe called Brown on the lower East Side
    • I was dating a woman who knew them
    • The drummer appeared to have something like torrette’s syndrome
    • He said things and made sounds and physical motions that were Kind of like tourettes
    • I didn’t have a lot of disability consciousness back then
    • I think I asked him, “Hey man, what’s wrong with you?”
    • The guitar player was also there and he just giggled
    • It was awkward
    • I had lived with someone already who had Tourette’s syndrome so I recognized the signs but lacked disability consciousness to form my question properly
    • I think if I had it over again I would probably not ask anything
    • Or I could say what I observed, like something like, “I notice that you are moving a lot and making sounds.”
    • And maybe that would be enough to get whatever answer I felt that I needed
    • It’s kind of like asking someone that you observed many rolls of flesh and pendulous thighs and expecting them to tell you they’re fat.
    • I certainly wouldn’t ask him Hey man what’s wrong with you
    • I think if I had it over I wouldn’t ask him anything

This Week’s Selfie:

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Conference Call On Steroids

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Misunderstanding at the bathroom

Welcome to What’s The Matter With Me? Podcast Season Six, Episode 31, “Conference Call On Steroids”

In this episode, the lady was pretty loud on the phone when she hosted her conference call on steroids.

S6e31

Misunderstanding at the bathroom

  • misunderstanding Using the bathroom at Trader vics
  • The bathroom at Embarcadero/ Ferry building
    • john john sat in the wheelchair

I’m woozy

  • Since I increased dosage, I’ve been falling a lot
  • I reluctantly cut back to one glass of wine at dinner
  • Jacques Pepin met his wife Gloria Evelyn Augier in 1966 when he was a ski instructor in 1966. she died on December 5, 2020. a Saturday
  • stopping at 1 allows me to get up by myself if I should fall
  • I had a couple glasses of champagne when Emily came over and then I fell
  • TN update: still feeling it, taking an extra pill every 6 hours. surgery scheduled for 9/22
  • Its making me woozy
  • Selfies are giving me beauty anxiety

Infusion

  • Had infusion with steroids and benadryl
  • My wife drove me

Conference Call On Steroids

Maybe the lady thought she was quieter than she actually was.

  • The infusion center is divided into stalls. Maybe a dozen. There are only 1 or 2 private rooms
  • The lady next to me was leading a conference call. I have seen a lot of people talk on the phone and have various conversations but never leading a conference call
  • After 15 minutes talking in a full throated voice about driving this or that or about who had visibility or not she hung up the phone and said in a meek voice gee I hope I wasn’t talking to loud
  • People have to work and I understand that part of it
  • The lady was probably on steroids

San Leandroni’s

  • Shout out to Claude hopper He wrote in to say maybe a person from San Leandro is a San Leandrite
  • That sounds like spelunking terminology

High School Wheels

  • I went back to my high school for a ceremony honoring a classmate who was an early artistic collaborator
  • In 2011 he painted a portrait of my wife and I

This Week’s Selfie:

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Birthday Dinner

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In this episode I battle face pain to go to a birthday dinner, take a family train trip, and have a date at the movies.

Welcome to the What’s The Matter With Me? Podcast Season 6, Episode 30, “Birthday Dinner.”

In this episode I battle face pain with varying levels of success to go to a birthday dinner at Trader Vic’s, take a family trip to the Embarcadero, and have a date at the movie theater.

Shout outs

  • Shout outs to Jersey Girl who used to work with Judy Huemann

Birthday Dinner at Trader Vic’s

Skate Spot

  • Rode the BART to Embarcadero to watch kids skate off the stairs
    • Market street Elevators
    • I was wearing my “SECURITY” t-shirt- from my Halloween costume. Lady came up asking me to defuse a situation with a guy on the escalator. I was in my wheelchair SMH
  • Holy shirt

Movie Date

  • I went to see Inu-oh and fell asleep
    • My face was hurting so i couldn’t go to lunch after and talk about it and we had to go back home
    • I worried about masks but We were the only ones at the 11am show
    • I showered shaved and wore a collared shirt

Old Millenials

  • The oldest millennials are entering their 40s
  • my cousin is in town and i wanted to call her but my face hurt when i talked so i gave up
  • i got fed up and called her anyways
  • in a few days we’re having her over for dinner
  • it hurt to talk to her but only once or twice and it was worth it
  • its a real bummer when disability intrudes on your ability to talk to your cousin

This Week’s Selfie:

selfie
My webcam broke so I used my phone

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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:

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

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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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