My name is John, I’m 38, husband, father to 2, I have multiple sclerosis, and I created the What’s The Matter With Me? podcast to share what I’m going through.

I believe in using the transformative power of creativity to achieve social justice. Joseph Beuys once famously claimed that, “Every man 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 interactions in the public sphere that create new connections 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.

WTMWM 35 – S2, E5: Pain is bearable

  • Welcome to Whats The matter with me Season 2, Episode 5: Pain is bearable
  • My name is John I’m 39 years old husband father of two small business owner radio DJ podcaster and I have multiple sclerosis, so I made this podcast to share what I’m going through
  • What’s the matter with me is an MS podcast and it’s also about other things. I’m not a medical professional and you should not take this for medical advice.  However, if you need medical advice, ask your healthcare provider.
  • Download The what’s the matter with Me podcast on Apple podcasts and Whatsthematterwithme.org

Shoutouts

Shoutouts to rocky Nate and joe.

Recap

Last episode episode 4 I was in so much pain. It almost made me angry but I think it was making me crazy. I was just writhing in pain check it out it’s an interesting listen.

Writhing in pain

My last episode was kind of terrible because I was just in pain so much but this episode I can report that my pain level has downgraded from extreme pain to intense pain and maybe even bearable. Definitely bearable I’m going to put it in the bearable category and no one can stop me because it’s my podcast. It’s bearable

Crunked Out, or Up

I’m in the process of changing my trigeminal neuralgia medication. In order to do that I am currently taking both my old medication and the new medication. Since they both have a sedative effect it’s I’m very crunked out. Or crunked up I’m not sure how the direction works there

Coaches Jackets

Coaches jacket. I went to Oakland and pick them up this morning. It was very tiring because like I said I’m totally crunked up or possibly out. It was a lot of driving and I hope I don’t have to drive a lot more today

LA Look

I’m trapped in a bubble in the hair gel, because I’m overmedicated.

Making music

Joe was in my high school band. It was called okra blues and it was mostly Modeled after the Jon Spencer Blues explosion and RL Burnside. It was punk rock blues.  He took his shirt off at the catholic school.

Nowadays We Jam Together

Nowadays We Jam together and I don’t play a lot really anymore. I’ve listened a lot. My approaches different and it is more like meditation and exercising acceptance of the sounds I’m making.

Accessible keyboard

I’m using a ROLI Seaboard, an accessible keyboard with different ways of striking notes and making sound.  It’s good to have an instrument to play.

Good to be alive

It’s good to be alive. I’m grateful for my family and friends. Every day’s a new opportunity.7 things are changing with my pain situation it is evolving in the new medication seems to be starting to work.

 

What’s The Matter With Me? Podcast – S2, E4: Bring It On Or Maybe Not

  • Hello and What’s The Matter With Me? Season 2, Episode 4.
  • My name is John I’m 39 years old husband father of two small business owner radio DJ podcaster and I have multiple sclerosis so I made this podcast to share what I’m going through.
  • What’s The Matter With Me? is an MS podcast and it’s also about other things. I’m not a medical professional and you should not take this for medical advice if you need medical advice ask your healthcare provider.
  • Download The What’s The Matter With Me? Podcast on Apple podcasts and whatsthematterwithme.org

Shoutouts

  • Shoutouts to Patrick and Nat. In the previous episode I talked about answering hoppin hot sauce fan mail was my new favorite activity. But maybe answering what’s the matter with me fan mail is even better?

Recap

  • neuro psych evaluation trippy wormhole. results later in the episode. things are blooming in the garden. hoppin hot sauce has started to exist beyond my immediate purview., out of the vicinity. various pains. shoulder has subsided somewhat.

Pain update – Trigeminal neuralgia pain, pinched nerve, back thrown out

  • My shoulder no longer keeping me up,. trigeminal neuralgia is worse. it hurts to talk, like stabbing electrical pain in my face, it is unbelievably concerning, it’s worse at night. my back hurts but its almost an after thought.

Neuro psych eval results

  • Neuropsych eval results – trouble switching from mode to mode. I score high end of average which is probably low for me. It’s hard to tell whether my brain my mouth or my motor skills are what is the problem

Pinched nerve

  • I have a pinched nerve in my neck probably resulting from some bulging vertebrae that were visible on My Last MRI.

Changing meds

  • Thinking about changing from Gabapentin

Hoppin Hot Sauce apparel

  • Coaches jacket

I Keep On Falling

  • Falling a lot. Because of my brace? Balance? Hurt my back falling in the yard and it has been aggravated by further falling.

Garden heat

  • sea daisies are turning brown

Pain

  • Bring it on, or maybe not
WAIS

What’s The Matter With Me? Podcast – S2, E3: Neuro Psych Eval

  • Hello and Welcome to Whats The matter with me? season 2, episode 3
  • My name is John I’m 39 years old husband father of two small business owner radio DJ podcaster and I have multiple sclerosis so I made this podcast to share what I’m going through
  • What’s the matter with me is an MS podcast and it’s also about other things I’m not a medical professional and you should not take this for medical advice if you need medical advice ask your healthcare provider

Shoutouts

  • Shoutouts Bob nat rocky joe . Rate it on iTunes and Facebook

Garden

  • The garden is beautiful. There are a lot of purple Asters and yellow yarrow. Birds are singing and the whole nine

Hoppin Hot Sauce continues to exist

  • I have shipped a few dozen of hoppin hot sauce orders and shipped 5 today

Pains

  • Trigeminal neuralgia – eye socket and cheek bone
  • Shoulder pain –  in my muscles and ligaments

Neuro Psych Eval

  • Neuro psych evaluation. Dr bummer. Told her about how I’m a Good person, good looking and rich — really just very blessed. Her next question, Do you suffer from delusional thoughts? We laughed.
  • Making color patterns with s. the stimulus book
  • I skipped the followup appointment to hear the results, i will have to hear them over the phone
flyer

Welcome to the What’s The Matter With Me? Podcast, Season 2, Episode 2 “Cafeteria”

My name is John I’m 39 years old husband father of two small business owner radio DJ podcaster and I have multiple sclerosis so I made this podcast to share what I’m going through.
What’s The Matter With Me? is an MS podcast and it’s also about other things I’m not a medical professional and you should not take this for medical advice if you need medical advice ask your healthcare provider
Download the What’s The Matter With Me? Podcast on Apple Podcasts and whatsthematterwithme.org

Contacts

Shoutouts to Rocky and Pat and some other people who contacted me to say they were digging this season premiere and looking forward to more. You can contact me using the contact page.

Great new life activity

A very validating new life activity that I have is answering Hoppin Hot Sauce fan mail.  I am so glad to get Hoppin Hot Sauce out in the world.

Take a seat in the cafeteria

I went to John John’s school orientation. It was in the cafeteria. I had to figure out where to sit. One of the teachers couldn’t work a microphone. They passed out a handout that listed the topics they would discuss but no useful information about them.  The principal talked about rules for a long time like the uniform and punctuality. I’m very excited, I’m just traumatized having gone to school already I didn’t consider going back.

Neverending jaw pain story

I increased my dosage of Gabapentin because I was having jaw pain. It made the pain go away but it made me sleep all day. I have reduced my dosage and I feel some pain but very low on the scale like one or two out of 10. I’m not too sleepy or sedated. I’m taking 300 extra milligrams right now. A couple of days ago I was taking 900 extra milligrams. Something like that.  I think I should get some guidance from the nurse.

Keeping track

One of the coolest things about this podcast is that when they listen to old episodes like from a year ago I can gauge how I feel now versus how I felt then and it is useful. I am doing a lot better than I was a year ago.

Recording the voiceless

I’m doing a special on KFJC about the musicologist Ian Brennan called Recording The Voiceless. He travels around the world recording prisoners, albinos, victims of genocide poverty and war. He’s recorded in Vietnam and Cambodia. Rwandan refugees. Albinos who are stigmatized and even killed for the a white color of their skin which is considered to have special properties. The albinos have a tune called “Disability is not a crime”. That’s how I got into it. The way he records voiceless people is kind of similar to the way disabled people aren’t given a voice, and I am concerned with that. I’ll play my interview with Ian on Thursday May 24th from noon to 2 p.m. Pacific Time on kfjc 89.7 FM and kfjc.Org where there will be an archive of it for 2 weeks.

Hoppin Hot Sauce is real

Hoppin Hot Sauce is real and is produced and it’s for sale at hoppinhotsauce.com. I’ll discuss it in more detail in an upcoming episode. If you end up as a customer, maybe you will end up writing me some fan mail.

legislature

Recap

I made 33 episodes in Season 1 and you can find them on Apple podcasts and whatsthematterwithme.org. I listened to them all and it just sounded like some guy complaining but that’s just my thing I guess so I’m going to go forward. I increased my disability Consciousness throughout Season 1 and I intend to continue in Season 2.

Contact

Many people contacted me so I want to give shout-outs to some of them – Jose, Bob, Jersey girl, Black Cat, Nat, Peggy, and Brian.  Thank you for listening and take you for writing me and offering me some support. Thank you. If you want to email me, visit the Contact page.

Season 2 Gratitude

So glad to be here for Season 2, Episodes 1 I feel pretty good let’s go over what’s going on.

Piano Fall

I was walking in the living room and I slipped and hit my face on the corner of the piano.  It was gnarly and it gave me swelling and a black eye.

Vacation in Sacramento

We went to Sacramento and made memories. It was difficult because we were both sick and for the record I hope I will never go on vacation as a sick person again. We ate as a nice little cafe called Juno Cafe it was good. I had spicy pasta with calabrian chiles. They had house baked bread that was very delicious. It’s very good Juno Cafe in Sacramento. That was the most vacation me moment I think. Sacramento is a great place for families. It’s a bad place if you have an allergy. The pharmacist joked with us that Sacramento was planted with all these trees like a conspiracy buy the allergy medication sellers. I thought that was kind of a crazy joke to make in the pharmacy. We stayed on a docked Riverboat called the Delta King which was a lot of fun for the kids. We were both sick so we wanted to sleep all the time. There was a train museum.  Crocker Art Museum was good they had Mexican and Peruvian Artifacts.

We picked Sacramento as a place to go on vacation because it was close. And our vacation was in April so it wasn’t going to be too hot. It was chosen so that maybe we could make it, and we did and I’m glad. It was difficult cuz we were sick but we Soldier through it and we saw a lot of cool stuff and I think the kids really enjoyed themselves. On the ride back we were all tired.

Jaw pain

I have had trigeminal neuralgia since then and varied from intense pain to sleeping all day and it’s been a struggle as usual. It’s wrapping up though I hope. It’s hard to tell but I think it’s on the wane.  Thanks for listening.

 

 

 

Still

Welcome to the Season Finale

Welcome to the What’s The Matter With Me? Podcast, Episode 33: A Scrap Of A Dad Is Still A Dad. It’s the NBD season finale.

My name is John, I’m 38 years old, husband, father of two, small business owner, radio DJ, podcaster, and I have multiple sclerosis so I made this podcast to share what I’m going through.  What’s The Matter With Me? is a MS podcast and it’s also about other things.  I am not a medical professional and you should not take this for medical advice. If you need medical advice ask your healthcare provider.

The What’s The Matter With Me? Podcast is available on Apple Podcasts and whatsthematterwithme.org

Recap Episode 32

Last episode, I meditated that social media was like the mirror scene from Enter the Dragon, the final match where Bruce Lee fights Han. They played it during setup at Lollapalooza before Smashing Pumpkins in 1995.  Some listeners wrote me about  the Wahls protocol. We talked about how this episode is the season finale and plans for the future.  There are new plants in the garden.  I am happy to say that my disability conciousness grew a lot in season 1.  Stay tuned for more in season 2..

Listener Mailbag

Listeners wrote in to say the podcast meant a lot to them and I want to give a shout out to those people and express thanks and gratitude. I am extremely happy and immensely gratified to provide support.  Thank you for listening, reaching out, contacting me and in turn supporting me.

I’m overjoyed when listeners write me.  You can contact me using the form on whatsthematterwithme.org.   While you’re there, why not Subscribe to our action network.

In The Handicap Space

Another parent was parked in the handicap space on Monday. I was dropping off John John and Koko.  She said she was late for work. I said that may be true, but this is space is not for convenience, it’s for access.  I told her I was a parent too and that it wasn’t personal. She said again she was late for work. I told her that I thought it was for access not convenience, and that furthermore her car was in my way and creating danger for me because I have to “go off-road” with my two kids.  I have hurt myself very seriously doing the same thing before.  Letting it slide would have been my preference, but when she started justifying her presence in the space, I had to say something.  My kids were watching.

DVD cover

A Scrap of a Dad

The Diving Bell and the Butterfly

The Diving Bell and the Butterfly (2007) was directed by Julian Schnabel about Jean-Dominique Bauby, played by Mathieu Almaric, who was the editor of Elle Magazine. He experienced a major stroke that left him with a case of what is often called “shut-in syndrome”. He had no way of communicating, or moving other than blinking his eye. With the help of a speech therapist, he learns to communicate using only blinking, and writes his memoir. The movie uses point of view cinematography after the stroke and scenes from the memoir are shown as flashbacks.

“Bauby assured people of an indestructible human essence inside the destructible human body.” – Mick LaSalle, San Francisco Chronicle

Fear of being shut in

Roger Ebert pointed out that Julian Schnabel has now directed three movies about artist creating in the face of obstacles. Basquiat, about a New York graffiti artist, Before Night Falls about persecuted poet Reynaldo Arenas.

Roger Ebert said he feared shut-in syndrome during his jaw surgery. MS can shut people down – I feel the same way, and this is so terrifying.  I think this is why it had such an effect on me.

jean-dominique on the phone

Phone call

A Scrap Of A Dad

The film affected me most when he spoke about being a father. In one scene, he is on the beach in his wheelchair with his family.  He reflects upon his inability to offer touch to his children. He is sad, but he says that even a scrap of a dad is still a dad. This greatly affected me. It made me cry.

Something I really struggle with is accepting my limitations in the context of fatherhood. Ultimately, a father is a father. All of them have limitations. As children we look up to our parents. One of the most difficult things is to accept that I have limitations and I am a father. Because I want to fight for my child and I’m worried that I won’t be able to – that I will lose the fight and I won’t be able to get what I need to get for John John. As always when you say it out loud it ends up sounding kind of ridiculous. Because I know I can definitely win that fight.  Turning obstacles into strengths is the name of the game around here.

Long-Awaited Upgrade, NBD Season Finale

I’m going to get a new computer. It’s actually being shipped to me right now. I will need to set it up once it gets here. I need to put the old episodes online. Once I get that straight I’m coming back for season 2.  Stay tuned!

  • I’m John Hoppin my email address is John at Hoppin world.com
  • The What’s The Matter with Me? Podcast is available on Apple podcast SoundCloud what’s the matter with me. Orgy and wherever else you find it
  • That’s What’s The Matter With Me? Episode 33 in the books thank you for listening

STAY TUNED FOR SEASON 2

 

sage

Enter The Dragon

In this episode, I tell all about the last scene in Enter the Dragon and how it connects to my experience going to Lollapalooza in 1994, the Wahl’s protocol, and the upcoming Season Finale in Episode 33.  Inspired by playing Episode 1 in the last episode, I compare where I am then and now.

Episode 31 Recap

Last episode, Yoko was here. She in Tokyo now, but things continue to happen to me, so let’s talk about them. I fell out of the shower. I saw my MS doctor and we discussed my recovery, and I told him the blanket analogy about how MS is like being trapped under a blanket that can be very heavy at times.  From the never-before-heard ancient history, I played Episode 1, about a visit to the occupational therapist, challenges with hot sauce manufacturing, and the desire to share my disabled experience both good and bad.  I wonder aloud, should I be on disability? I told the blanket analogy to my occupational therapist.  I resolve to try and make something out of crisis.

Enter The 36 Echo Chambers

The echo chamber of social media is like the final scene of the great Bruce Lee movie Enter the Dragon where he fights Han with all the mirrors.
When I went to Lollapalooza in 1994 before Smashing Pumpkins came out they played this scene.
I went to Lollapalooza see the Beastie Boys, and I thought Parliament was especially memorable because they had a guy dressed as a baby. Bootsy Collins was very far out.  Cypress Hills was there, and Guided By Voices too, but I wasn’t hip enough to be up on that yet.  I was fifteen, and I remember being confused.

Wahl’s Protocol

Listeners wrote in on the website and the Facebook page to ask if I knew about Dr. Terry Wahl’s protocol, which is a dietary approach to fighting multiple sclerosis.
One of the few things that seems to really affect how I am feeling is what I’m eating. Because of this, I try to cook as much as I can myself using minimally processed ingredients. This way I know more about what is going in to my body, so I can easily make changes and modify my approach.

Episode 33 Will Be the Season 1 Finale

The final episode of the season will be the next episode, Episode 33. I’m going to take a pause for a long-overdue upgrade to my computer and audio equipment.  In advance of the Season 2 Premiere, I’m going to put season 1 back online.  I’m already speaking to different people and making efforts to expand my network, so I can bring new voices and perspectives to the podcast in Season 2.  Expanding my vision will increase my podcast’s Disability Consciousness, grow understanding and make our community stronger.

New Growth

Last week the landscaper was here and we planted new plants in the garden, cut some old ones back, and retired some others.  New arrivals include red snapdragon, mexican sage.  Everything is looking great in the garden and getting ready for Spring.

Differences from Then to Now

Listening to last episode, I was struck by how different things were in Episode 1 in comparison to the present time.  In Episode 1, I wonder about getting disability.  I applied for disability and received it in Episode 20, five months later.  I got my ankle-foot orthotic (AFO) brace in episode 1, but it took until Episode 8, two months later, before I could wear it without too much pain.  Even though it still hurts, now I wear it every day.  I’m looking into getting a scooter, so I can increase my range and go farther.  The best difference is that I feel better and more positive.

Stay Tuned

Tune in to Episode 33 for a look back on Season 1 and how we’ll get ready for Season 2.

Exam room

Doctor Visit

In this episode my wife’s mom was visiting, I fall out of the shower, I visit the my doctor at the Stanford multiple sclerosis clinic, and play Episode 1 which is a really validating experience, because many of the themes still resonate.

Episode 30 Recap

Last episode, I exhibited at the Winter Fancy Food Show which was a big step forward for my business. Fulfillment, sales and following up arer ongoing. Getting it together was a lot of work and I experienced some cognitive slowness as a result, and in the episode I told a little story about that. I played Episode 2 in which I shared my intention to get better.

Feeling Better

My wife’s mom Yoko just flew back to Tokyo after staying with us here in San Jose for a couple weeks, and while she was here she told me that I looked better. She said that I seemed sharper and more with it and better in my eyes. I guess I did get better, because I feel better, like I am recovering and getting better. Thanks for listening to my podcast, because it helps and supports me.

I Fell

I fell out of the shower covered in soap. I dropped the soapy puff, and some soap got on the ground and flew out of the shower. Somehow, I emerged unscathed.

Doctor Appointment

My doctor said that my current MS medication was probably working OK enough not to change it, that my past medication probably hadn’t worked, which led me to experience greater symptoms and lose functionality. He said he thought that my disease activity could be too microscopic to detect, and that was how nothing showed up on my MRI.

Good To Be Young

He told me that it is good I am young, because I had time to heal. I told him the blanket analogy that I use to understand MS: that it is like being under a blanket with no edges, impossible to escape. Sometimes heavy and other times lighter, you are always under the blanket.

Episode 1

Without further ado, it’s time to go back to the beginning: Episode 1.  Only a few people ever got this, over e-mail.  In this episode, it’s the month of Mayhem at KFJC, and I go to in for an Occupational Therapist Visit, where I share about Hot Sauce R&D and my Workforce Vision.

Droll

It’s the month of Mayhem at KFJC, and DJs do special programs all month long. Droll pre-empted my show to do a special about music in odd time signatures.

Occupational Therapist Julie

I went to Stanford to visit the occupational therapist. We talked about my business Hoppin Hot Sauce and R&D, recipe development and production bottlenecks. I told her about my vision of a workforce with disabled, vets, and ex-cons, working together in a supportive environment. I got on a tangent and had to flush the segment down the toilet. I start over again.
I ask Julie if I should be on disability. She showed me how it could help me. I got approved for disability in Episode 20 and I went through further feelings about it in Episode 21. Improbably, I told her the blanket analogy! I told her about how I believe in trying.

Going for it

It was great to hear so many familiar themes: the struggle, endeavoring to try, and cultivating positive healing intentions. I’m very happy with the way things are going.

John in the hoppin hot sauce trade show booth

What’s The Matter With Me? Podcast Episode 30

My name is John, I’m 38 years old, husband and father of two, small business owner, radio DJ, podcaster, and I have multiple sclerosis.  I made this podcast to share what I’m going through.

Disabled entrepreneur

Episode 30 of the What’s The Matter With Me? podcast revolves around promoting my brand at a trade show as a disabled entrepreneur with MS.

It was really fun and a major step forward for my business. Check out the episode for more.

Transcript:

Welcome to the What’s The Matter With Me? Podcast Episode 30: “Disabled Entrepreneur.” My name is John. I’m 38 years old, husband and father of two, small business owner, radio DJ, podcaster. And I have MS. I made this podcast to share what I’m going through.

Recap last episode. I was talking about shoelaces, and some listeners wrote me back on the What’s The Matter With Me? Podcast Facebook page. That was cool. Thanks for hitting me up. I’m going to check out your suggestions. And then steroids. I took my MS drug Rituxan, and I had to take steroids. We had a little discussion about MS drug fatality risk. I talked about that I was going to the Winter Fancy Food Show. We’ll talk about it in a minute. It was cool. And then I played episode 3, the throwback episode. Check whatsthematterwithme.org.

I went to the Winter Fancy Food Show yesterday. It was a massive deal for Hoppin Hot Sauce first and foremost. But it was a big physical challenge for me as a person with MS. I had a lot of anxiety about it, leading up to it. I was also just doing a lot of work, so it was pretty stressful. I’m glad it’s over. I’m still decompressing. It was just yesterday. In fact, I’m kind of still in work mode. I’m sending invoices and filing stuff and getting ready to reach out again. So I guess it never ends, but Winter Fancy Food Show was great. We were set up in a row of young entrepreneurs. The guy on the right to me made a bunch of different kinds of hummus and interesting … he was Persian, interesting Persian products.

The partners on the other side were a man and a woman, and they made cookies out of tofu production secondary stream products. Which means stuff that’s usually a byproduct or a throwaway product. They used … they made it into flour, like some residue from soybean into flour. They wanted to make tortillas and all kinds of other bread products. But they make at this time cookies. That was cool to be next to them.

There were a lot of attendees walking by, thousands, throughout the day. We were in between Moscone North and South, kind of at the entrance of the hall in this kind of corridor, outside the elevator. Anyway, it had lots of people. It was a good location, because many people passed by and you could get them to sample the products. And so I’m a natural hawker. I’m like, “Hey, you.” Make eyes at people. They love me. I say stupid things. I’m great if you like a stupid hawker. I’m bad if you’re, like, wanting a highbrow afternoon. I’m not going to give it to you. I’m like to people … I’m like, “Hey, you know. I think you should probably try Hoppin Hot Sauce. It’ll change you.”

I just say … I think other people don’t say weird enough stuff, or they say boring thing. “Would you like to try?” I didn’t want to do that. I mean, how could I say that? I’m not that kind of guy. “Would you like to try a sample? Sample?” No, no. No. I’m just like, “Hoppin Hot Sauce will change you.” You know what I mean? If I don’t get them the first time, I’ll just be a little firmer. I didn’t hector or harangue anyone. I made a note beforehand, “Do not harass anyone walking by the way you know that you are just liable to do. No potshots. Highbrow only. Keep it clean.” Yeah, I did it. It was good.

There were some folks there, though. You know what I mean? A big old conference in San Francisco has some people looking of some type of way at the conference. It is great. There was a guy with crabs on his pants. I was like to Brook my assistant, helper, partner that day … I turned to her. I said, “Look, I think that man has crabs.” That’s the kind of day we had. We were just sampling hot sauce, chatting it up. I met lots of people. Crabs on his pants, you know what I’m saying? He had crabs on his pants.

I had a great time. I met buyers. I met vendors, manufacturers, and a lot of consumers. I learned a lot about what they thought about the sauce. It was like a giant focus group, a very useful one, full of professionals in the industry. Many people complimented me on the taste of the sauce and the appearance of my brand, marketing and labels, and stuff like that. My cousin made the table drape. Shout outs to My Media Designer. He made the table drape for me.

Brook helped me, and so it just was a really cool thing in that I met lots of people, and made lots of contact. And I kept my energy together by sitting down, by eating snack food, by drinking water. Brook really helped me with that. That allowed me to talk to people and represent the brand and sell the product. I had to take two potty breaks, and the bathroom was really close, right across the walkway. So that was simple. Thank goodness. It was a great opportunity to show what I had, and I had something. I love to talk to people. I could do that all day.

So thanks to Brook. Thanks to Manny. Thanks to my mom. Thanks to Nami. Thanks to KitchenTown. I managed to do it. My team was strong. Thanks to Cobra Verde. We all put it together and linked and came together like Voltron. I loved it. I loved it. And we were all in the head together making all the decisions, working as a team. And we were all in the arms punching and destroying, and we were all in the finger pointing number one. We were number one. Voltron.

So I’m really glad Hoppin Hot Sauce has a new extra hot product. Development went into high gear. We worked a lot, so good things are coming in the future. So let’s see what happened. I was gone for a couple weeks, so I had a few thoughts. I checked out Rooted in Rights. It’s an organization of disabled people in Long Island led by a woman who was … a young woman who used to be on Sesame Street. I think she was on like six episodes of Sesame Streets about 10 years ago. So everybody has something in their past, and for her it’s Sesame Street. But check out this group Rooted in Rights. They have a cool website, and you can subscribe. They have … it’s like a blog network. I still have to check out the Disability Visibility Project. I need to add to it Rooted in Rights. I’m getting more into this. I’m getting more resources, because something big is coming from this.

I was working hard getting ready for the Fancy Food Show, and now I started having … brushing up close to the wall my limits where I was going to have cognitive fog, fatigue. I’m starting to get tired. So in the afternoon, I was getting really foggy. And you know, when you have that cognitive slowness, it’s like mud, it’s like muck. I’ve talked about it before. You can’t figure out what you’re doing. You wander around the house. For me, I wandered around the house flipping light switches to see if that’s what I’m supposed to be doing. And then I flipped the light switch, it’s a garbage disposal. Scared the heck out of me. That brought me … snapped me to. I’m like, “What am I doing? What am I trying to achieve?”

That’s the thing about cognitive fog. For me, I’m trying to work. I’m trying to make things happen for myself. I don’t want to be lost in a fog all day. So that’s like one of the hardest parts about MS. But if you manage and you don’t work too hard in the afternoon and you … for me, I take naps. That seems to help, but it’s a tough balancing act. I got things I’m trying to do or I want to accomplish, so it’s something I have to work with all the time.

All right. Let’s get into this. The throwback episode number 2. We’re getting close to the end. So without further ado, way back from the prehistory of What’s The Matter With Me?, this was episode 2.

Right, let’s get down to it with What’s The Matter With Me? Episode 2. I’m John. I have MS. I made this podcast to share what I’m going through. So let’s recap last episode, episode 1. I sent it to, like, two people on email, and probably maybe they listened to it. Sometime you got to start small. So what’d we talk about last time? I have a hot sauce business. We talked about that, and my dream of employing disabled people, people who’ve been in the prison system, and veterans. And we talked about going on disability. I wasn’t sure if I was going to go on disability or not. Spoiler, I talked to my doctor. She said, “You should definitely be on disability. You can still make money and work.” And after that, I was kind of sold. Then we talked about my philosophy about trying to do things, and that’s what this podcast is about. So I think it’ll be obvious.

Part of it, listening back, something stood out. I said that I can’t. I used the word can’t, and even worse, I said I can’t work, which is so ridiculous. I have a company. I am on the radio on KFJC every Thursday 10:00 AM to 2:00 PM, and I do a couple of other things while I’m at it. And I’m a dad for two people. I can work. Whether or not I can work, I’m going to try and work. That’s my philosophy.

So let’s talk about working in the garden. I have a garden in the backyard. California native plants. I spend a lot of time back there. I have trouble sometimes. I’ve fallen in the garden and hurt myself. One time I fell into the side of the house, and I, like, skinned my head, and I lost a bunch of hair. I mean, it was terrible. I like, basically, headbutted the side of the house, man, and the house won. So that was tough.

So I’ve been working a lot, doing physical therapy and balance exercises so I don’t fall in the garden, and I always wear my brace. I have an ankle foot orthotic brace that supports my ankle, helps me walk. So my physical therapist said, “You always have to have that.” And even I have a stick, like a cane, I use for balance. Got to have that. So I started using that, always when I go in the garden, and it’s reduced like … I was falling every day, and it’s reduced my falls quite a lot. Just today I ordered some accessibility tools, some kind of seat. We’ll see how it works. It’s kind of like seat stander kneeler thing, which’ll help, because I have to sometimes work on plants for a long time, and I need to sit near them. Maybe they’ll help.

That’s cool to invest in, the accessibility tools. Today I was trimming the rose bushes, and my hand comes into a fist, like a claw, and it’s hard to get a glove on. I had to really work hard, but I did it, and I trimmed my roses. I’m happy to say my rose bushes, which my grandmother planted at this house, are alive and well. So maybe grandmother and grandpa … grandma and grandpa, shout outs.

I’ve had inability to control my emotions. I have a lot of lesions, brain lesions, in my brain stem. My doctor said, “Sometimes you’ll have inability to control your emotions. It’ll feel bad.” And I didn’t know what he was talking about, but I’ve started to have that. I’ve really have a hard time on the weekends, because things are different. During Monday through Friday, I get up by myself. I have a routine, and in doing that routine, I kind of get a diagnostic sense of how well I feel and how much I can do that day. But when I can’t do it, like when my wife and my kids are up making breakfast when I get up, I got to take a shower.

I have a routine, and it gets me ready, so when I’m out of it, it’s causing me a lot of confusion. The routine helped me know, okay, here’s where I am. I get my breakfast going, and I have a lot of confusion, which makes me upset, because I don’t know what’s going on because there’s not really … my routine’s not happening. Instead, I’m reacting. And that’s difficult for me. So I’m trying to manage that, because I’m totally getting bent out of shape, going nuts, and becoming really aggressive, because I’m just super confused.

So that’s a challenge. Every weekend day we work on it. In the morning, and it hasn’t been going well, frankly. It just sucks, and so I’m working on it. Trying to control my emotions. I need a little support and understanding, probably a lot, from my family to let me do things like make coffee and things that allow me to see how well I’m feeling with my motor skills, but also allow me to say, “Okay, I made coffee,” and I can go sit and have coffee that I made.

So it’s little things, like, I go sit and have coffee and my breakfast on Monday through Friday. On the weekends, the breakfast still going, it’s been throwing me off, and it’s been making me really upset. I hope that just talking about it here and saying I intend to be better will help me get better.

So, that’s What’s The Matter With Me? Podcast Episode 2. Tune in next week. Probably I’ll email it to two people again, and no one’ll hear it. The What’s The Matter With Me? Podcast is available on Apple Podcast, and whatsthematterwithme.org. My name is John Hoppin. Episode 30 in the books. Thank you for tuning in.

Young green chives

Welcome to Episode 29 of the What’s The Matter With Me? Podcast: “Rituximab Infusion”

In this episode we’ll take a look at:

  • no-tie shoelaces
  • last week’s rituximab infusion (my multiple sclerosis medication)
  • Hoppin Hot Sauce‘s inclusion in the Winter Fancy Food Show
  • Pre-history throwback pilot Episode 3, in which I have a hard time asking for help

NOTE: Most of the early episodes are offline for maintenance, and I’ll put them back as soon as I can get around to it.  Thanks for understanding.

No-Tie Shoelaces

In What’s The Matter With Me? Episode 29, I spoke about moving on from shoe laces, and soon after I recorded it, I was looking for new shoes.

asics gel nimbus 20

I bought Asics Gel Nimbus shoes with no-tie shoelaces and they are working out for me. They are black Asics running shoes with white soles.They look pretty much like regular shoes but the laces are made of elastic so they function more like slip-on shoes. They are kind of stretchy to move in and it takes some getting used to. At first I felt self-conscious wearing them but now I like the way they look. They ran me $160 on Zappos which is pricier than I’m used to but the shoe is a lot easier to use than New Balance 574 Classics which run around $75. They are so much easier to get on and off, and that saves a lot of time and energy, things in short supply.

Rituximab infusion

Last Tuesday I got my infusion of rituximab which is my primary multiple sclerosis medication. My appointment was for 1:30 p.m. but I had to take Benadryl and Solu-Medrol as precursors. Because it was the afternoon and I was taking powerful steroids like Solu-Medrol, I had trouble sleeping that night.

Rituximab is a prophylactic-type medication and I don’t usually feel a difference right away. I think it is helping me but I am continuing to have multiple sclerosis. It is not healing me for sure. It’s hard to tell, maybe it is protecting me from getting worse. That is a hard situation for multiple sclerosis patients like myself, because you can’t tell whether your medication is working or not.

I’m getting older for sure and that is no easy ride. So there are challenges for everyone always across the board.  I have a lot on my plate and I have to stay focused.  I’m glad rituximab infusion isn’t causing me any major problems.

Talk less, act more

winter fancy foods show moscone interior

Remember last episode I told you that my New Year’s resolution was: “Talk less, act more.”  I spoke about wanting to get my brand out there.  Well, things are happening, and fast!  It’s exciting.

Hoppin Hot Sauce will take part in the the Winter Fancy Foods Show as a part of KitchenTown‘s Incubator Alley booth at Moscone Center on Tuesday, January 23. I have been given an opportunity to jump-start my brand, to move from prototypes to orders, and to make my brand real. The time line is very tight and showtime is 8 days away.  It is taking all my time and fatigue is tough to manage.  I am intimidated by my workload and I need support to avoid getting into an emergency. I am reaching out- it is working. Letting people know about the challenge I face is getting them on my side.  I need the discipline to delegate and manage properly.

Baby chives

Baby chives are growing in the winter garden.  I can find peace and hope in the natural cycle of renewal and the good, right energy of growing plants.

Pre-history throwback Episode 3

Episode 3 revolves around having to ask for help, and the complicated feelings that go with that.  I need help, but I don’t want to ask.  It’s cool to hear old episodes, because of slight differences in the way I approach my disability.  Nowadays, I feel a lot less hemming and hawing asking for help.  This podcast has given me the strength to ask for help, and to be comfortable with myself.  That is a good thing.