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WTMWM? – S2, E9: Swimming

  • Welcome to the Whats The Matter With Me? Podcast Season 2, Episode 9: Swimming
  • 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

 

Episode 8 Recap

Last episode featured a movie review of a short film by Jason dasilva, I wanted to try and go swimming, made a movie for Hoppin hot sauce, and my tomato plants were fruiting.

Shoutouts

Shoutouts to Eric who told me he’d been listening to my pod.  Eric lives in Sacramento so he was digging the Sacramento episode.  Write me by clicking the contact link at the top of the page and I’ll give you a shout-out, I’m easy.

Fall Down Seven Times, Stand Up Eight

Fall down seven times and stand up eight, this is a Japanese proverb. in short it means something similar to “it’s not whether you win or lose, but how you play the game.” It’s different, I thought it was a poetic image and I felt like it could be good to think about. Because I am always falling down and having to stand up and face challenges.

Then I Googled it and I found a bunch of people who have it as a tattoo, and a rock song about it. I had a good idea about it in my mind and then Google image search was just ruining it for me. Sometimes you shouldn’t search for things on the internet. Certainly sometimes it’s plenty to ponder something on your own, and keep the internet out of it. In my mental courtroom, it has all been stricken from the record.

Swimming

On John John’s 5th birthday I went swimming in the pool at my parents house. In the last episode I said I was worried that I wouldn’t be able to get in and out of the pool but I hoped that I would try to get in. My family was there including my Uncle Frank along with my stepfather Dave.

When it was time to get into the pool I got a chair, one of those foldable camping chairs, and set down in it close to the pool. My idea was to sit in the chair, and then I would get from there onto the ground and then crawl into the pool. I set down in the chair. Nami and uncle franc came over to help. They helped me stand up from the chair. “I wanted to get down on the ground and then go into the pool,” I told them. They helped me get on my knees, and it seemed rather easy for everybody and I didn’t feel like I would fall. I crawled into the pool, where I played with my kids and my cousins and it was a great time.  

When it was time to get out, I crawled out, and tried to get up by myself, holding on to the fence. I couldn’t quite get it done, so my stepdad Dave came over and helped me by supporting me on my right side, which is my bad side. I stood up easy. I ripped up my toes on the concrete when I was trying to get up by myself, but it was minor and I cleaned it up easily with a baby wipe.

I sat in the shade and thought about how I had been worried about being able to swim, and how happy the kids were to play in the water with me. Thanks to Nami and Dave and Franc and my family for all the support, it was a happy moment.

Spread The Word

Check out the Whats The Matter With Me? podcast on Facebook, please review it and like it, hate it, whatever — help me get the word out.  You can Contact me here.

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.

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. 

What’s The Matter With Me? Podcast – S2, E4: Bring It On Or Maybe Not

  • Hello and What’s The Matter With Me? Season 2, Episode 4.
  • 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

Shoutouts

  • Shoutouts to Patrick and Nat. In the previous episode I talked about answering hoppin hot sauce fan mail was my new favorite activity. But maybe answering what’s the matter with me fan mail is even better?

Recap

  • neuro psych evaluation trippy wormhole. results later in the episode. things are blooming in the garden. hoppin hot sauce has started to exist beyond my immediate purview., out of the vicinity. various pains. shoulder has subsided somewhat.

Pain update – Trigeminal neuralgia pain, pinched nerve, back thrown out

  • My shoulder no longer keeping me up,. trigeminal neuralgia is worse. it hurts to talk, like stabbing electrical pain in my face, it is unbelievably concerning, it’s worse at night. my back hurts but its almost an after thought.

Neuro psych eval results

  • Neuropsych eval results – trouble switching from mode to mode. I score high end of average which is probably low for me. It’s hard to tell whether my brain my mouth or my motor skills are what is the problem

Pinched nerve

  • I have a pinched nerve in my neck probably resulting from some bulging vertebrae that were visible on My Last MRI.

Changing meds

  • Thinking about changing from Gabapentin

Hoppin Hot Sauce apparel

  • Coaches jacket

I Keep On Falling

  • Falling a lot. Because of my brace? Balance? Hurt my back falling in the yard and it has been aggravated by further falling.

Garden heat

  • sea daisies are turning brown

Pain

  • Bring it on, or maybe not
John in the hoppin hot sauce trade show booth

What’s The Matter With Me? Podcast Episode 30

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.

Disabled entrepreneur

Episode 30 of the What’s The Matter With Me? podcast revolves around promoting my brand at a trade show as a disabled entrepreneur with MS.

It was really fun and a major step forward for my business. Check out the episode for more.

Transcript:

Welcome to the What’s The Matter With Me? Podcast Episode 30: “Disabled Entrepreneur.” My name is John. I’m 38 years old, husband and father of two, small business owner, radio DJ, podcaster. And I have MS. I made this podcast to share what I’m going through.

Recap last episode. I was talking about shoelaces, and some listeners wrote me back on the What’s The Matter With Me? Podcast Facebook page. That was cool. Thanks for hitting me up. I’m going to check out your suggestions. And then steroids. I took my MS drug Rituxan, and I had to take steroids. We had a little discussion about MS drug fatality risk. I talked about that I was going to the Winter Fancy Food Show. We’ll talk about it in a minute. It was cool. And then I played episode 3, the throwback episode. Check whatsthematterwithme.org.

I went to the Winter Fancy Food Show yesterday. It was a massive deal for Hoppin Hot Sauce first and foremost. But it was a big physical challenge for me as a person with MS. I had a lot of anxiety about it, leading up to it. I was also just doing a lot of work, so it was pretty stressful. I’m glad it’s over. I’m still decompressing. It was just yesterday. In fact, I’m kind of still in work mode. I’m sending invoices and filing stuff and getting ready to reach out again. So I guess it never ends, but Winter Fancy Food Show was great. We were set up in a row of young entrepreneurs. The guy on the right to me made a bunch of different kinds of hummus and interesting … he was Persian, interesting Persian products.

The partners on the other side were a man and a woman, and they made cookies out of tofu production secondary stream products. Which means stuff that’s usually a byproduct or a throwaway product. They used … they made it into flour, like some residue from soybean into flour. They wanted to make tortillas and all kinds of other bread products. But they make at this time cookies. That was cool to be next to them.

There were a lot of attendees walking by, thousands, throughout the day. We were in between Moscone North and South, kind of at the entrance of the hall in this kind of corridor, outside the elevator. Anyway, it had lots of people. It was a good location, because many people passed by and you could get them to sample the products. And so I’m a natural hawker. I’m like, “Hey, you.” Make eyes at people. They love me. I say stupid things. I’m great if you like a stupid hawker. I’m bad if you’re, like, wanting a highbrow afternoon. I’m not going to give it to you. I’m like to people … I’m like, “Hey, you know. I think you should probably try Hoppin Hot Sauce. It’ll change you.”

I just say … I think other people don’t say weird enough stuff, or they say boring thing. “Would you like to try?” I didn’t want to do that. I mean, how could I say that? I’m not that kind of guy. “Would you like to try a sample? Sample?” No, no. No. I’m just like, “Hoppin Hot Sauce will change you.” You know what I mean? If I don’t get them the first time, I’ll just be a little firmer. I didn’t hector or harangue anyone. I made a note beforehand, “Do not harass anyone walking by the way you know that you are just liable to do. No potshots. Highbrow only. Keep it clean.” Yeah, I did it. It was good.

There were some folks there, though. You know what I mean? A big old conference in San Francisco has some people looking of some type of way at the conference. It is great. There was a guy with crabs on his pants. I was like to Brook my assistant, helper, partner that day … I turned to her. I said, “Look, I think that man has crabs.” That’s the kind of day we had. We were just sampling hot sauce, chatting it up. I met lots of people. Crabs on his pants, you know what I’m saying? He had crabs on his pants.

I had a great time. I met buyers. I met vendors, manufacturers, and a lot of consumers. I learned a lot about what they thought about the sauce. It was like a giant focus group, a very useful one, full of professionals in the industry. Many people complimented me on the taste of the sauce and the appearance of my brand, marketing and labels, and stuff like that. My cousin made the table drape. Shout outs to My Media Designer. He made the table drape for me.

Brook helped me, and so it just was a really cool thing in that I met lots of people, and made lots of contact. And I kept my energy together by sitting down, by eating snack food, by drinking water. Brook really helped me with that. That allowed me to talk to people and represent the brand and sell the product. I had to take two potty breaks, and the bathroom was really close, right across the walkway. So that was simple. Thank goodness. It was a great opportunity to show what I had, and I had something. I love to talk to people. I could do that all day.

So thanks to Brook. Thanks to Manny. Thanks to my mom. Thanks to Nami. Thanks to KitchenTown. I managed to do it. My team was strong. Thanks to Cobra Verde. We all put it together and linked and came together like Voltron. I loved it. I loved it. And we were all in the head together making all the decisions, working as a team. And we were all in the arms punching and destroying, and we were all in the finger pointing number one. We were number one. Voltron.

So I’m really glad Hoppin Hot Sauce has a new extra hot product. Development went into high gear. We worked a lot, so good things are coming in the future. So let’s see what happened. I was gone for a couple weeks, so I had a few thoughts. I checked out Rooted in Rights. It’s an organization of disabled people in Long Island led by a woman who was … a young woman who used to be on Sesame Street. I think she was on like six episodes of Sesame Streets about 10 years ago. So everybody has something in their past, and for her it’s Sesame Street. But check out this group Rooted in Rights. They have a cool website, and you can subscribe. They have … it’s like a blog network. I still have to check out the Disability Visibility Project. I need to add to it Rooted in Rights. I’m getting more into this. I’m getting more resources, because something big is coming from this.

I was working hard getting ready for the Fancy Food Show, and now I started having … brushing up close to the wall my limits where I was going to have cognitive fog, fatigue. I’m starting to get tired. So in the afternoon, I was getting really foggy. And you know, when you have that cognitive slowness, it’s like mud, it’s like muck. I’ve talked about it before. You can’t figure out what you’re doing. You wander around the house. For me, I wandered around the house flipping light switches to see if that’s what I’m supposed to be doing. And then I flipped the light switch, it’s a garbage disposal. Scared the heck out of me. That brought me … snapped me to. I’m like, “What am I doing? What am I trying to achieve?”

That’s the thing about cognitive fog. For me, I’m trying to work. I’m trying to make things happen for myself. I don’t want to be lost in a fog all day. So that’s like one of the hardest parts about MS. But if you manage and you don’t work too hard in the afternoon and you … for me, I take naps. That seems to help, but it’s a tough balancing act. I got things I’m trying to do or I want to accomplish, so it’s something I have to work with all the time.

All right. Let’s get into this. The throwback episode number 2. We’re getting close to the end. So without further ado, way back from the prehistory of What’s The Matter With Me?, this was episode 2.

Right, let’s get down to it with What’s The Matter With Me? Episode 2. I’m John. I have MS. I made this podcast to share what I’m going through. So let’s recap last episode, episode 1. I sent it to, like, two people on email, and probably maybe they listened to it. Sometime you got to start small. So what’d we talk about last time? I have a hot sauce business. We talked about that, and my dream of employing disabled people, people who’ve been in the prison system, and veterans. And we talked about going on disability. I wasn’t sure if I was going to go on disability or not. Spoiler, I talked to my doctor. She said, “You should definitely be on disability. You can still make money and work.” And after that, I was kind of sold. Then we talked about my philosophy about trying to do things, and that’s what this podcast is about. So I think it’ll be obvious.

Part of it, listening back, something stood out. I said that I can’t. I used the word can’t, and even worse, I said I can’t work, which is so ridiculous. I have a company. I am on the radio on KFJC every Thursday 10:00 AM to 2:00 PM, and I do a couple of other things while I’m at it. And I’m a dad for two people. I can work. Whether or not I can work, I’m going to try and work. That’s my philosophy.

So let’s talk about working in the garden. I have a garden in the backyard. California native plants. I spend a lot of time back there. I have trouble sometimes. I’ve fallen in the garden and hurt myself. One time I fell into the side of the house, and I, like, skinned my head, and I lost a bunch of hair. I mean, it was terrible. I like, basically, headbutted the side of the house, man, and the house won. So that was tough.

So I’ve been working a lot, doing physical therapy and balance exercises so I don’t fall in the garden, and I always wear my brace. I have an ankle foot orthotic brace that supports my ankle, helps me walk. So my physical therapist said, “You always have to have that.” And even I have a stick, like a cane, I use for balance. Got to have that. So I started using that, always when I go in the garden, and it’s reduced like … I was falling every day, and it’s reduced my falls quite a lot. Just today I ordered some accessibility tools, some kind of seat. We’ll see how it works. It’s kind of like seat stander kneeler thing, which’ll help, because I have to sometimes work on plants for a long time, and I need to sit near them. Maybe they’ll help.

That’s cool to invest in, the accessibility tools. Today I was trimming the rose bushes, and my hand comes into a fist, like a claw, and it’s hard to get a glove on. I had to really work hard, but I did it, and I trimmed my roses. I’m happy to say my rose bushes, which my grandmother planted at this house, are alive and well. So maybe grandmother and grandpa … grandma and grandpa, shout outs.

I’ve had inability to control my emotions. I have a lot of lesions, brain lesions, in my brain stem. My doctor said, “Sometimes you’ll have inability to control your emotions. It’ll feel bad.” And I didn’t know what he was talking about, but I’ve started to have that. I’ve really have a hard time on the weekends, because things are different. During Monday through Friday, I get up by myself. I have a routine, and in doing that routine, I kind of get a diagnostic sense of how well I feel and how much I can do that day. But when I can’t do it, like when my wife and my kids are up making breakfast when I get up, I got to take a shower.

I have a routine, and it gets me ready, so when I’m out of it, it’s causing me a lot of confusion. The routine helped me know, okay, here’s where I am. I get my breakfast going, and I have a lot of confusion, which makes me upset, because I don’t know what’s going on because there’s not really … my routine’s not happening. Instead, I’m reacting. And that’s difficult for me. So I’m trying to manage that, because I’m totally getting bent out of shape, going nuts, and becoming really aggressive, because I’m just super confused.

So that’s a challenge. Every weekend day we work on it. In the morning, and it hasn’t been going well, frankly. It just sucks, and so I’m working on it. Trying to control my emotions. I need a little support and understanding, probably a lot, from my family to let me do things like make coffee and things that allow me to see how well I’m feeling with my motor skills, but also allow me to say, “Okay, I made coffee,” and I can go sit and have coffee that I made.

So it’s little things, like, I go sit and have coffee and my breakfast on Monday through Friday. On the weekends, the breakfast still going, it’s been throwing me off, and it’s been making me really upset. I hope that just talking about it here and saying I intend to be better will help me get better.

So, that’s What’s The Matter With Me? Podcast Episode 2. Tune in next week. Probably I’ll email it to two people again, and no one’ll hear it. The What’s The Matter With Me? Podcast is available on Apple Podcast, and whatsthematterwithme.org. My name is John Hoppin. Episode 30 in the books. Thank you for tuning in.