What’s The Matter With Me? Podcast

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.

Episodes:

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.

I had to take the episodes down for maintenance

I had to take all the episodes of the What’s The Matter With Me? Podcast down for maintenance.  I’ll be putting the episodes back online ASAP.  I hope to have Episode 28 back up today, and I’ll start from there.  I’m sorry I don’t have what you are looking for.  Stay tuned to What’s The Matter With Me? for more.

hand

It’s a New Year and time to move forward

Last episode of What’s The Matter With Me? Episode 27 wasn’t very focused and I could have explained myself and foregrounded what is going on with my Multiple Sclerosis disability more effectively.  The title of this podcast is What’s The Matter With Me? after all. I resolve to run things a little more by-the-book this year.  For this episode, at least.

Cafe Oto

cafe oto street scene

Crowd outside Cafe Oto in Dalston, East London

Last episode,  I reviewed Marshall Allen’s Volcano Quartet CD Volcano Swing, a live performance at the BBC in London, where he was in town for three nights at Cafe Oto.  Listener Chris lives there and wrote in to let me know about the location, in Dalston, East London, and some live shows he had seen there.  It sounds groovy and I hope to check it out myself someday.

Never give up

I can have a bad episode.  A terrible episode.  Ghastly.  But I won’t give up or cede an inch in any direction.

I discussed in Episode 25 as well as Episode 4 that I won’t give up.  The pressure to give in and let go of the rope and drown in my disability is extreme.  Multiple sclerosis is suffocating and pervasive.  I have been dumped and it felt very bad — I bet that anybody having a hard time with something feels the same.

Tapering Medication

I called my neurologist to request help with tapering down Gabapentin, they said I’d get a call-back in 24-48 hours, but they called me back in about an hour.  I was concerned because I had adjusting my own dosage without any guidance, which is bad practice.  The nurse told me that my dosages had been fine, and outlined the boundaries for my pain meds.  My dosage is back to normal, and I am not in pain.

No-tie Shoelaces and shoelace replacements

I’ve bit the bullet and decided to get rid of my laced shoes.  I’ve got some no-tie shoelaces which turn my shoe into slip-ons.  They’re working OK but my shoe feels like it might fall off.  I’m glad to be done with shoelaces because they came untied and I wouldn’t retie them.  I’ve got some shoelace replacements in the mail.  I’ll go over them in an upcoming episode.

Disability Visibility Project

Disability Visibility Project Alice Wong icon

Disabilty Visibility Project Alice Wong icon

Disability Visibility Project is a platform for creating, sharing, and amplifying disabled voices created by disabled activist Alice Wong.  I said in Episode 25 that in 2018 I would bring new voices to the podcast and the Disability Visibility Project is part of that effort.

Interrupting the Uninterruptible

I hosted the Blues Collective with Jack Tar from 10am to 2pm on KFJC yesterday,.  For the first hour, Jack plays the music and runs the mixing board while I sit below in the interview area.  At 11, we switch places, and I run the board and he is below on the mic.  We do it again at noon and at one.

While it was my time to run the board, I played the same song twice.  I put my foot on the wrong place and unplugged whata the engineer told me was the “Uninterruptible Power Supply” — it turned off the CD players, the lights — pretty much the entire station!  I ferlt like I lacked focus or was fatigued, and I messed up the show.

Everybody feels that way sometimes.  “Uninterruptible”?  All I had to do was unplug it.

New Year’s Resolution

Talk less, act more.  This podcast is a bit of both.  Don’t think too hard about it.