Tag Archive for: health

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.

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.

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.

Episode 27 “New Blog / Throwback Episode 4: Help”

As my limitations from multiple sclerosis increase, I’ve had to get comfortable asking for assistance.  Asking for and accepting help is one of the secrets of effective people. Or so I’m told.

Winter rolls on. I continue to produce content and work on the site daily.  Being with family and experiencing multiple sclerosis or disability can be difficult to manage, and pressure only increases during the holiday.

Papa’s Got A Brand New Blog

I’ve added a blog to the site, and I discuss my first post, about a disabled woman’s social isolation.  Episode 4, “Help” from the pre-history, chronicles never giving up, in an echo of Episode 25.

I never stop reviewing records

I am reviewing Marshall Allen Volcano Quartet’s CD Volcano Swing. Marshall Allen was part of the Sun Ra Arkestra and this band is a continuation of that.  They were in London in 2011 when a volcano exploded in Iceland, grounding all flights. The band took a three-day residency at Cafe Oto in North London.

They stopped by the BBC Radio to promote the gig and recorded this CD. At the end of the CD there is a live interview and Marshall Allen reveals that he was a member of the Sun Ra Arkestra trapped in Seattle when Mount Saint Helens exploded in 1984.  Pretty awesome, it makes it clear that a musicians life is always about getting that next gig in line.

Episode Synopsis

  • It is cold in the garden and there was light frosting a couple of times this week
  • I’ve got a new blog
  • People in wheelchairs are judged and face cruel realities
  • Marshall Allen Volcano Quartet “Volcano Swing” CD review
  • Throwback Episode 4 “Help”

The holidays are almost over — just New Year’s. Hopefully I’ll hike somewhere good.

Slogging through the holiday with MS and trigeminal neuralgia pain
I fell and ripped out the belt loop from my carpenter pants
Throwback to the pilot: Episode 5 when I had an MRI reaction and a boil on my butt – gross

Mary from Friends NYC @friendsnyc picked out this sweater

I‘ll Never Give Up – Look at my window: I’m alive.
I didn’t quit doing this thing that is very scary – to share.
I have built my disability consciousness and that will continue.
I am going to bring new voices to the podcast in 2018.
I figured out what I’m going to do about the handicap space at my children’s School- get help from the administration.
I am going to release the email only episodes to get ready for the New Year.

The photograph is of an accessible cutting board I recently began using.

What’s The Matter With Me? Podcast

Episode 24: Hole

Recovering from Multiple Sclerosis and moving my small hot sauce business forward

“Hole in the wall”, A fall story

I tripped over myself  in my bedroom and punched a hole in the wall.  It was klutzy and embarrassing, but at least the wall took the worst of it and I came through okay.

I’m in recovery

My Nurse Practitioner told me I was in recovery from MS and that changed my perspective.  I have been in a defensive stance, and I can begin to makje positive steps forward.

Hoppin Hot Sauce — Extra Hot

I’m spending all of my time creating a new flavor of Hoppin Hot Sauce, Extra Hot.

Positive vibes

Keep things positive and moving forward in a good direction, and everything will be all right.

Episode 23

Thank you for tuning in to the What’s The Matter With Me? Podcast.  In Episode 23 Roll With The Punches I fall asleep at the KFJC meeting, hang in the yard, experience intense Trigeminal neuralgia pain, and read an old song lyric I wrote called “Roll With The Punches.”

Fatigue

I fell asleep at the KFJC weekly station meeting and that was distressing.  I woke up and everyone was looking at me.  It shook me and later in the evening I fell off the station couch awkwardly.  I go to KFJC to relax and these kinds of things make that difficult.

Yard hang

I went in the yard with John John.  It was a sunny warm day and we took our shirts off, wrapping them around our heads.  We laughed a bit and smiled.  It was a good thing.

Trigeminal Neuralgia Pain

I have been experiencing pain from trigeminal neuralgia in my right lower jaw on the buccal side.  It feels like going to the dentist, and when they say “it’s going to pinch” before you get novocaine and then it pinches and won’t stop pinching all night long.  It’s very hard, and I hope it stops soon.

Poetry reading: “Roll With The Punches”

I read a song I wrote called Roll With The Punches.  Check it out:

Roll With The Punches

You gotta roll
With the punches sometimes
Sometimes,
You gotta roll

You gotta know
Who’s on your side
Just as much as
Who’s passing you by

Don’t have no glass jaw
O Hell Naw
When you get knocked down
You gotta stand up tall

You gotta bend but don’t break
Give em all they can take
And a whole lot more
Until you hear em hit the floor

You gotta roll
With the punches sometimes
Sometimes,
Sometimes.

 

-John Hoppin, 2013

 

Welcome to What’s The Matter With Me? Podcast Episode 22, “Gallons, Untied Shoes, Commes des garcons/Rei Kawakubo, Surplus Store Shopping”

In this episode: New hot sauce size — Disaster: Shoes came untied — Changes in disability is like wearing Rei Kawakubo/Commes des garcons clothes — A good time shopping at the surplus store

New hot sauce size

Hoppin Hot Sauce now comes in gallons, for my foodservice clients.  It’s so they can re-use bottles.

Disaster: Shoes came untied

My shoes came untied durinf my radio show and my cohost untied them.  He was older than me, and it was thought provoking.

Changes in disability is like wearing Rei Kawakubo/Commes des garcons clothes

It’s ungainly and strange; people look at you funny.  No one, including myself, knows quite what to do.  I read some commentary about the avant-garde fashion designer Rei Kawakubo and I found commonality with my experience as a disabled person.

A good time shopping at the surplus store

I went shopping with my family at the surplus store.  We got a lot of things that we needed, it wasn’t too difficult.  My family helped me a lot.

Welcome to What’s The Matter With Me? Episode 21, “Complicated feelings about Federal Disability, Falling, Nasty Tracksuit”

In this episode: Qualifying for Federal Disability Pt. II — Two Falls, One Painful, and The Other With Wine — Going Shopping and buying a tracksuit with filthy pictures on it that my wife asked me not to wear around her or our children