Tag Archive for: multiple sclerosis

Episode 29: Rituximab infusion

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.

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#28: New Year

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.

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#27: Throwback Episode “Help”

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.

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#26: Throwback Episode 5 “MRI”

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

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#25: Keep Going

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.

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#24: “Hole”

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.

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#23: Roll With The Punches

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

 

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#22: Gallons, Untied Shoes, Commes des garcons/Rei Kawakubo, Surplus Store Shopping

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.

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#21: Complicated feelings about Federal Disability, Falling, Nasty Tracksuit

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

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#20: Disabled dad struggling to build my business and my life

Welcome to What’s The Matter With Me? Episode 20, “Disabled dad struggling to build my business and my life”

In this episode: I Fell — Sweating — Boathouse Hike — Secretary of State — Hot Sauce Business — Disability

Hand rails are useful for people with MS and other disabilities. I took this photo outside my dentist’s office in Santa Clara, California.

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