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Welcome to Whats The Matter With Me? Season 2, Episode 14: Harvest & Wedding

  • 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 so I made this podcast to share what I’m going through.
  • Whats 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.

Last Episode Recap

I got a new brace from a disabled provider; I am a creative person and for me that means I must take charge of my own representation in order to be who I imagine; Hoppin Hot Sauce is advancing, and I’m getting more disabled and simple things are getting harder.

Shoutouts

Shoutouts to Rocky- always listening; Kyle fromTwo Disabled Dudes podcast, to my wife who worked hard at the Harvest Festival and every other day too. Email me and I will give you a shout out free of charge.

Off The Air

I’ve been off the air for a few weeks, I took Hoppin Hot Sauce to a Harvest Fair. I’ve started a
Hoppin Hot Sauce Youtube channel, and I went on vacation to a wedding in Malibu. let’s get into it.

Harvest Festival

We went to the Harvest Festival at Marshall Cottle Park in San Jose, organized by San Jose Made, a local organizer of maker events and craft fairs. We set up a booth for Hoppin Hot Sauce, with bottles, poster easels, and myself and my wife passing out samples.. My goals were #1- to represent the brand and #2- to sell some sauce. We did well. It was 5 hours of talking, very tiring and I slept the whole next day. Next time I will be sure there are two people with me, not just me. I am no good to fold a popup canopy no matter how easy it is. i made a video about it and put it on the youtube channel.

YouTube Channel

I started the Hoppin Hot Sauce youtube channel. I made two videos: the zipa, and the harvest fair recap. i’ve been directing a lot of my energy that way, learning software i haven’t used in 15 years, learning about putting it online. I like it because I can tell my brand’s story, speaking directly to the customer, and also say things that are positive representations of disabled people.

Malibu

I went to malibu for a beautiful wedding under a big palm tree at a glamorous house overlooking the ocean. they were my wife’s oldest friends, they had grown up scampering over the fence to each other’s house in 1980s southern california.

Creating New Products

I’m working on some new products for Hoppin Hot Sauce , one is a spicy salad dressing which seems crazy but people often remark to me that they put it on salad.
when it was time to make lunch today i cubed up some leftover tritip, tossed it with arugula in a bowl, and put spicy salad dressing on it, some walnuts and raisins, and it was pretty good. I’m in mad scientist mode: I’ve got some ideas, and I’ll keep going. I’m also doubting myself constantly like always. The struggle is to move forward and to be comfortable with the unknown. i must always remember- move onwards.

still

WTMWM? – S2, E8: The Disability Trap

Welcome to the Whats The Matter With Me? Podcast Season 2, Episode 8: The Disability Trap

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 please rate us. Download the Whats The Matter With Me? Podcast from Apple podcasts and Whatsthematterwithme.org

Episode 7 Recap

Last episode, I took MS medicine by infusion and it knocked me out and burned me up, complained about reddit, new brace, I can zip up my own fly, for now.

Shoutouts

Shout out to Patrick– it turns out he found out about this podcast from the time I posted it on Reddit so in fact even though I thought it was disappointing, I got through to people even though I didn’t see it at first. Patrick is a young father with MS like me. He told me that he was inspired by What’s the Matter With Me? and started his own Ms blog on Facebook called Taking It Day By Day- Patrick’s MS Story. Check it out and many thanks and shout outs to Patrick.

I’m just going to keep it rollin’ with the shout outs so shoutouts to Rocky. I know she listens because she responds to the episodes in text messages. She is a librarian and she is trying to get the American Library Association to divest from fossil fuels. She has started to reach out to divestment experts to help amplify her argument from an environmental as well as a financial viewpoint. It’s very persuasive and I will put a link to it in the post on this episode on whatsthematterwithme.org. Shoutouts and thanks for listening Rocky. Click here to listen to her interview.

The Disability Trap

I watched an interesting short film called The Disability Trap by Jason DaSilva, the director of When I Walk, probably the foremost disabled filmmaker. He wrote an op ed in New York Times and as part of it included The Disability Trap, which raised some important questions. Before I get to that I noticed that the movie is about 13 minutes long, I think MS people make stuff that is about 13 minutes long and that’s about right I guess. That’s how I do it too. The film tells how in some states like New York, where Jason lives, the state provides one-on-one in-home care, so he live at home, be more independent and studies show he will have a longer life expectancy. His son lives in Texas, and in order for Jason to move there he will have to live in a home and he will lose a considerable amount of Independence and freedom. The point of his op-ed is that this creates an impossible choice whereby in order to gain proximity to his son he must relinquish his life as he knows it. It’s from the New York Times June 24th edition, called The Disability Trap by Jason DaSilva.

John’s Birthday / Swimming

It is so important tor me to be present as a father to my son, and I can’t imagine what Jason is going through. It’s John John’s 5th birthday tomorrow and we are going to go to Santa Rosa to be with my parents. We will all go swimming in the pool. I might try and get into the pool it’s kind of hard and I stubbed my toes a lot but I think I will try. I hope it is not too dangerous. Maybe I will try getting in on the deep end. I hope I can still swim.

Hoppin Hot Sauce Movie

I made the Hoppin Hot Sauce movie where I spoke about how I have MS but I didn’t let it stop me from cooking. I put it on my Youtube channel, and my customer email, where this month it was the top item. I was nervous about it, but the response has been uniformly positive. The gears are spinning and I am working on a few more videos already. Hoppin Hot Sauce is good sauce and social entrepreneurship and I think there’s something very positive about that. I’m going to keep working at it.

Tomato Salad

I’m starting to get tomatoes off the tomato plants and their are pretty ugly but they are delicious. I hope we get a lot more. We put them in salad with oil and vinegar, basil and salt.

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.

6 inch diameter hole in drywall

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.