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.

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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:

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My webcam broke so I used my phone
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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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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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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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My friends came over and I got some much-needed support. PLUS, more adventures in Cooking While Disabled.

Welcome to What’s The Matter With Me? Podcast, Season 6 Episode 26, “We Had A Barbecue”

When in doubt, grill it out

In this episode, my friends came over to have a barbecue and I got some much-needed support. PLUS, more adventures in Cooking While Disabled.

  • Gangnam Style was 10 years ago on July 15, 2012
  • Record review: “Gospel drone trance screaming blues minimalism” Reverend Charlie Jackson, God’s Got It
  • Shout outs to Kevin
  • Global Shout Zone- geographical shout outs
  • Irish people say “fert”
  • Somethin from the DJ Game Homeez: Ice T “Reckless”
  • Seafoam
  • ADA victory: Uber agrees to pay disabled riders
  • I was feeling down and had some friends over on Sunday to make hot dogs with the J. Kenji Lopez-Alt tray technique
  • To make it easier on myself, I outsourced the creation of coleslaw and potato salad
  • Making it easier on myself makes it easier on my guests
  • Tinned fish sounds better then canned fish
  • Reminder about using frozen puff pastry to make it easier
  • Nami loved seeing the magician Perry Yan for the 2nd time pymagic.com
  • The car wash closed for a month because they’re overhauling the machines.
  • My friends came over and it was great. I’m very lucky. It was like having a support group all to myself.

This Week’s Selfie:

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We had a barbecue

Welcome to What’s The Matter With Me? Podcast, Season 6 Episode 25, “Are You Here By Yourself?”

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are you here by yourself?

People keep asking me, “are you here by yourself?” I’m not sure when I should have someone with me when I go somewhere alone. Whether I’m OK to go or..

  • Didn’t even want too say anything but what did I tell you- he dumped that nerd and he’s going to the prom with Kelly.
  • I went to the butcher shop and I got some good looking red snapper filets.
Anthony B
  • Getting snapper reminded me of the time Anthony B & his band were at Avenida Rotella in South San Jose and they ordered snapper fish
  • The nerd is going to get more than one billion dollars but He really trashed her. He got her onstage and said she was fake in front of everyone
  • And now he wants to back out
  • Judy Heumann from crip camp in conversation with pbs books tue jul 26
  • Koko has ominous theme music when she says hey John john in the morning
the david berman bot on twitter
  • my head has mostly recovered from having road rash. pretty much totally
  • I’m feeling isolated like I cant go anywhere alone, so I need to ask people to go places or something
  • I’m not very good at asking for help but I can see I have to reach out more
  • do you think J.S. Bach stands for Juoly Sh** Bach
  • The comedian said you know you’re fat when you have to put your belt in your belt loops before you put it on.
  • I thought that was an interesting idea
  • You know you have one arm when you put your belt in the belt loops before you put it on
  • My backyard has a lot of trees and it’s a shady backyard but every backyard I’ve ever had has been a shady backyard because I’m in it
  • It’s time to get a haircut and It feels weird to go by myself.
  • I don’t think anyone is going to say you came by yourself?
  • I told the hairstylist & she volunteered to help me do outside sales
  • I’m not sure if that’s a good idea but I appreciate the thought
  • I did some more press for Hoppin Hot Sauce and I wrote handwritten notes with my red hot sauce pen
  • Beetlejuice chair
  • DAMMIT IM MAD IS DAMMIT IM MAD BACKWARDS SO GIVE IT UP QUIT BEING MAD BECAUSE IT DOESNT TAKE YOU ANYWHERE
  • and you deserve to go places

This week’s selfie:

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Are you by yourself??
Fourth of July cover
Going places in my chair- Hit my head again- Barbecue using the tray method- The Pepper Show is back.

Welcome to the What’s The Matter With Me? Podcast, “Fourth of July”

In this episode, we take stock of the busy Fourth of July holiday week that was full of wheelchair rolls, head injuries and new grilling setups. Plus, we got a new Pepper Show!

  • Statistical shout outs to places far and wide and thick and thin where people listen to the show.
  • Have you heard of the disorder where people take s**** in their sleep? Yeah it’s called sleep crapnea.
  • While I was copying that down my wife was like, “You can’t say that, it has swearing in it.” I was like “Yes I can, I’ll bleep it.” And then she was like, “You have to leave the ‘sh’ sound otherwise people won’t know what word it is.” I was like “I can do that!” And then she said, “Would you please turn off the light?” I said, “Would you please let me write down this f****** joke!”
  • July 1- Fell and hit my head on the house, like in the old episode It’s Fall. I ordered replacement tips for my stick from REI
  • July 2- I went to a wedding in my chair, and then I went to the reception in my brace.
  • July 3- I shopped at Urban Ore in my chair. I went to get lunch at the fried chicken sandwich place and the guy who was next in line had me cut in front of him and I accepted. But then I started to feel weird about the people after him.
  • July 4- On the 4th I went to San Jose to my parents’ block party where I rode my wheelchair. My mom told me she was happy I was there and that I was in my chair taking it easy. It wasn’t much of a barbecue- I didn’t have anything that was grilled. We had chile verde
  • July 5- I barbecued a redo of the 4th of July by grilling hot dogs, bratwurst, and corn. A new method using aluminum trays, yielded positive results and the kids gave it positive reviews. For dessert, we had apple pie.
  • I recorded the Pepper Show and the vibe is more or less soft in the head. But at least I did it. I can do a better one next time.

This Week’s Selfie:

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I got out the cowboy hat because why not? YOLO
I Admire You Cover
Using touchless pickup at Walmart with mixed results. Unexpected comments provide food for thought.

Welcome to the What’s The Matter With Me? Podcast, Season 6 Episode 23, “I Admire You.”

In “I Admire You”, I went to Walmart again. Which means that I like it, maybe. People made unexpected comments to me this week, so I dealt with those as best I could. Hoppin Hot Sauce is back in business. At the Royal Shakespeare Company, disabled actor is playing Richard III, a first. It’s a disabled role often played by someone acting disabled.

  • Shout outs to Claude Hopper- he listened to the whole podcast. This is the 197th episode
  • I went to Walmart again, this time for white t shirts
  • Did your delivery driver go above and beyond?
  • We sent 8 cases of sauce for Amazon
  • We sent 18 cases to Williams Sonoma s western region
  • The Most Real Richard III There’s Ever Been New York Times article about the disabled actor Arthur Hughes
  • I was leaving the liquor store Some guy wearing An American Flag bandana And a white goatee asked me if I needed help. I said I was ok and thanked him. It made me question if I should go out alone

Journey to Walmart again

  • I went to Walmart again and this time I ordered pickup
  • Before getting in the car I grabbed my trekking pole & 40th birthday cowboy hat
  • When I got to Walmart I Drove around the whole parking lot 3 times trying to find the pickup spot.
  • In the end I couldn’t find it, so I went inside
  • The greeter tried to get me to go to the other side of the store
  • She could see I was not into that
  • She told me I could use the app to tell them I was here, but she didn’t know how to do that or what it was called and Neither did I
  • She said that I could park my car near the garden area
  • Turning Around to get out of there I moved unsteadily and the greeter reached out to steady me
  • I used my trekking pole
  • I went back to my car.
  • When I was getting in my car a woman in the parking lot said “I admire you. You’re out here, and you’re doing your thing”
  • Then I drove my car to the Garden area and parked on the curb
  • There was a sign to call a phone number if you were here to pick up.
  • I called and no one answered
  • People with blue vests were walking around my car.
  • I told one of them that I had called and he said that no one answered because he was the only one working.
  • He said that he would help me. He went off and came back in a few minutes with the shirts
  • I don’t know why I keep going to the Davis street Walmart
  • It was nice to be admired

Questionable Parting Shots

This week’s selfie

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Cheese in hot sauce headquarters
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I didn’t want them. They’re big and ugly.

Welcome to the What’s The Matter With Me? Podcast, Season 6 Episode 22, “ADA Bars Keep Me From Falling.”

In the new episode, I have to admit that ADA bars have been useful. Tune in because this episode features sound effects. The guy who taught me to do production was really into sound effects, that was pretty much his only feedback. “Pretty good. You could add a couple of sound effects,” he’d say.

  • ADA grab bars keep me from falling over.
  • My mom is the one who let me know that the last episode originally didn’t work, so shout out to mom. I fixed it but still shout outs to mom
  • Shout outs to Rocky. Rocky also told me she couldn’t download my podcast. When she called me, she was hanging wallpaper.
  • It’s weird how people say I’m hanging wallpaper instead of sticking wallpaper to the wall.
  • I fixed the last episode now so go download it
  • shout outs to the countries metro areas and bioregions tuned in to the What’s The Matter With Me? Podcast
  • From 11:45pm to 12:30am on Father’s Day, Koko screamed I WANT MAMA at the top of her lungs.
  • She gets broken blood vessels in her face from screaming
  • Eventually she calmed down, took a pee and went to bed
  • An idea for malt liquor eggnog, endorsed by Snoop Dogg, called Stoop Nogg
  • I have ADA grab bars in my shower but I didn’t want them.
  • They are big and ugly, but they save my butt all the time. Originally I didn’t want them, because of how they look.
  • The ADA grab bar in Visalia didn’t work because it was on the right side, far from the flimsy door with a brick step up in between.
  • When I am washing my face or my hair and I tilt my head back, I can get disoriented.
  • Youtube music is horse doody.
  • Radio is about discovering new music and algorithms based on your past activity are bad at that.
  • Ask your audio surveillance helper to play I’ll be your mirror and it follows it up with Van Morrison
  • DJ Algorithm plays what the magic equation thinks you’ll like, not what it thinks you need to hear
  • Radio has always been the way we discover new music
  • I listen to kfjc wfmu wkcr wbgo kcsm
  • Koko is going to summer camp and learning new things. She made a lanyard and she likes singing along to the camp songs. She also said, “Whether it’s a little one or a big one, it’s still a wedgie.”
  • The new hot sauce came in and we’ll start getting it to our accounts right away. its been a year that I’ve been trying to order new hot sauce and I finally have it.

This week’s selfie

ada grab bars keep me from falling selfie
In the hot sauce headquarters
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A reporter for KCBS News reached out and interviewed me about supply chain, multiple sclerosis, and Hoppin Hot Sauce.

Welcome to the What’s The Matter With Me? Podcast Season Six, Episode 21 “I was on KCBS”

The media onslaught continues!! You might remember that on last week’s episode, I made the paper here in San Leandro. A reporter for KCBS News reached out and interviewed me about supply chain, MS, and Hoppin Hot Sauce. Check it out:

Also in this week’s episode:

  • NBA Finals One-handed basketball player Hansel Emmanuel Gatorade commercial
  • My knee is feeling better and stronger, and I haven’t been taking any drugs for it because it’s basically fine. Still, I’m not walking that well over all
  • I went to Walmart to get propane tanks for the grill and it was an ordeal getting around the huge store.
  • Last week, I put my shirt in the wash and I took a sad gray t-shirt selfie instead. I apologize for appearing so dour and for the bait and switch.
  • We went to west coast craft at Fort Mason in SF. It was a pretty crowded event with lots of cool beach towels and other things. As I rolled around in my chair, I was at butt level.
  • Lamps there were $5, 6, 12, 13 & 19 hundred dollars.
  • On eBay there are a lot of cool old lamps for less than $100 – used or not, an old lamp makes new light
  • Koko’s birthday party was well attended, she felt celebrated and she got a lot of presents
  • It made John John mad with envy and reduced him to a blubbering sniveling wreck
  • As a consolation prize, he made the all star team in baseball. The game is this weekend. He’ll get a t-shirt

dall e mini made strange radios that look like like a bottle of hot sauce and a bizarre faceless all-star baseball team

  • I was interviewed on kcbs news radio
  • KCBS is so big that the weather report is basically useless. I got to give my message about being a disabled person and going for it anyways.
  • We tried a new truck, the Tacos el grullo truck in East Oakland. I had 3 al pastor tacos. The street had cars swerving to avoid potholes and Scrap metal
  • Last episode I played “Ian” from last year to end the episode.

Here’s this week’s selfie:

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This week’s selfie isn’t so dour

Thank you for listening to the What’s The Matter With Me? Podcast

Catch you next time!