What’s The Matter With Me? Podcast

My name is John, I’m 39 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:

WTMWM? – S2, E7: Wacky Wednesday

  • Welcome to the Whats The Matter With Me? Podcast Season 2, Episode 7: Wacky Wednesday
  • My name is John, I’m 39 years old, husband and father of two, small business owner, radio DJ, podcaster and I have multiple sclerosis (MS), so I made this podcast to share what I’m going through
  • The Whats The Matter With Me? Podcast 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.
  • Find us on Facebook and for goodness sake please rate us.  Download the Whats The Matter With Me? Podcast from Apple podcasts and Whatsthematterwithme.org

Shoutouts

Shout-outs to Liz who is a DJ at the radio station where I host a radio show on Thursdays.

Infusion

I had my primary MS medicine infusion a few days ago. They hooked me with the IV,  gave me steroids, also knocked me out. I came home and had to make food which was hard to put together because I was wiped out. I need to call a car or something. after infusion i’m toasted. The next morning I woke at 4:30 AM, my torso burning up. Nauseated. Maybe my appointment time was too late in the afternoon, and I got more or less hungover.

/r/MultipleSclerosis fail

I posted about this podcast in the multiple sclerosis subreddit.  I asked people to post their favorite multiple sclerosis podcasts.I was looking for inspiration– I want to find material that I can relate to.  I got several responses but the first stood out.  
So here’s what I asked: “Please post your favorite multiple sclerosis podcast here! It can be a single episode or a series- I’m looking for inspiration.
For my part, I’m a 38 year old husband and father, small business owner, and I have MS. I’m just trying to make it.
I started my own podcast because I couldn’t find podcasts that featured somebody speaking from our perspective. It’s called What’s The Matter With Me? and you can find it on Apple Podcasts or at whatsthematterwithme.org
What do you all listen to? Thanks, John”
From TornaydoTornahdo: “I would never listen to a podcast about MS. I can’t think of anything more depressing than listening to people talk about that in my free time. I already have enough problems related to it. Having it be a presence in my fun/pop culture/whatever time isn’t ideal.  I know other people do want stuff like that, so I hope you get a lot of listeners.”
I think this person was being honest and trying to look at it from both sides, and I appreciate that.  Nevertheless, it’s always rough to get your first response a strong NO. Unfortunately, as the responses came in, I didn’t find much inspiration: no patient-produced material, just information about What Is MS? and like that.  Informative, but not inspirational. It was kind of a let-down– People always talk about Reddit like it can change the world, So maybe I set my expectations a little too high. There is probably another way to go about it that will yield better results.  Because I don’t think this podcast is depressing. I think it’s the story of trying to overcome obstacles. I am a disabled person and because of that, my voice is marginalized. I gain power through the use of my voice to tell my story. Listeners, some with MS and others without, continuously reach out to report that listening has inspired them, offered a new perspective or made them feel better.  I am thankful for that.

Time To Replace My Ankle-Foot Orthotoic

I need a new brace – the straps keep coming open, it’s hard to keep them fastened because the brace is past it’s lifespan.  It’s a carbon fiber brace, and when they are new, they feel very springy but as they get a few years old, the life seems to go out of them.  It’s got dings and scratches, and one of these is developing into a crack. I have an appointment to get it looked at in a couple of weeks.

Can you give me a hand?

I had my fly unzipped on Wacky Wednesday at my children’s school. I must have had it open the whole time I was there, I went to the bathroom and thought, Maybe the reason no one says anything about it is they don’t want me to ask them to help me zip it up.

No Necktie

John John was going to wear a necktie but kiboshed it at the last minute. I can’t blame him, he wasn’t getting paid by employer or judged by a higher power

swallowing heads

WTMWM? – S2, E6: Awaker

  • Welcome to the Whats The Matter With Me? Podcast Season 2, Episode 6: Awaker
  • My name is John, I’m 39 years old, husband and father of two, small business owner, radio DJ, podcaster and I have multiple sclerosis (MS), so I made this podcast to share what I’m going through
  • The Whats The Matter With Me? Podcast 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.
  • Find us on Facebook and for goodness sake please rate us.  Download the Whats The Matter With Me? Podcast from Apple podcasts and Whatsthematterwithme.org

Shoutouts to my Mom

Mom listened to the podcast, and she told me, “I listened to your pod.”  Isn’t it funny how parents do that?  They get creative with the lingo.  She used to say, Intendo instead of Nintendo, and nowadays she does the same thing with text messages.  She calls them tweets.  “Tweet me,” shje’ll say.  Or, “I tweeted you.  Didn’t you get my tweet?”  Shoutouts to Mom, love you Mom.  Email me using the contact form on the site, and I’ll shout you out.

Recap

Writhing In Pain, Crunked Up or Crunked Out?, Coaches jackets, living in a hair gel air bubble, making music with my old compadre, accessible instruments, its good to be alive.  It’s all in the last episode, check it out.

Drool

“AAA!!” John John shouted as I bent over to brush his teeth, pointing frantically.  I tried to look where he was pointing, but he moved whenever I turned my head to look.  “Papa, you’re drooling,” he said, and laughed.  I looked in the mirror, he was right, I had drool on my chin.  The way things have been going, it was the least of my problems, but its a phobia I have — to become a vegetable.  It’s just fear — my drooling scared John John when I was brushing his teeth, it is what it is.  If I can keep my mouth shut and stay focused, I’ll be all right. 

Through the fence

My most major fall since the last episode occurred in the backyard while I was gardening. First off, I am unhurt.  I fell through the fence when I was trimming the garrya elliptica wavyleaf silktassel bushes. Completely through the fence, I ended up in my neighbor Tim’s yard. The garrya bushes are low-growing and dense, and they were covering my feet.  I reached out a hand to steady myself on the fence, it moved and I fell right through it. Nami helped me put it back together. The posts are cracked and rotting, it seems like the next strong wind will bring it down, but then in the morning it’s still standing.

Video

I shot a video for Hoppin Hot Sauce wearing my new coaches jacket that I got screen printed in Oakland. It felt great and I think it might have looked great, fingers crossed. I read the following script:

My name is John Hoppin and I created Hoppin Hot Sauce from chiles, Meyer lemon, garlic and spices.. I’ve worked in food all my life. I put hot sauce on everything, grilled cheese, lunch leftovers. It gives it a certain Tang that I prefer.
I have multiple sclerosis and it makes it difficult to work in the kitchen environment. I didn’t let it stop me from cooking.
I made Hoppin Hot Sauce to share the taste of my table with yours. It’s all natural with no preservatives, and all good stuff inside. For people who want their food to taste the best, nothing beats Hoppin Hot Sauce.

It made me feel powerful to write and deliver those lines. I hope it will turn out, I’ll share it with you when I get it out of editing.

Less sedation

I’m on less sedation and it’s feeling pretty good to be more alert. Maybe ‘alert’ is a stretch.  I’m afraid of more pain, that the pain will wake up and rear its ugly head.  For the time being, I am relatively awaker.

Live in the present

Live in the present moment..  I had this more-or-less standard revelation listening to music on the way to the farmer’s market.  There were a lot of wonderful fruits and vegetables that deserved my attention, and there will be more next week. If I stay focused on the present, not stuck in the past, or woulda-coulda, I think it will help me be happy. 

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.