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“Face hurts … Tomorrow is Koko’s 3rd Birthday”

Man!– I have trigeminal neuralgia, my face hurts. Ow! The kids had to go away, it hurt so bad I couldn’t handle it and I freaked out. I’ve been staring at plants in the garden. I grilled chicken for the whole family, had dinner and couldn’t eat it, because my face hurt. Tomorrow is Koko’s third birthday.

Welcome to What’s The Matter With Me? Podcast, Season three, Episode nine: “Happy Birthday, Koko”

Welcome to the What’s The Matter With Me? Podcast.

“My name is John. I’m 40 years old, husband, 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.”

Past episodes can be downloaded on Apple Podcasts or from WhatsTheMatterWithMe.org, or wherever you get it. I’m not a medical professional, don’t take this for medical advice and if you need medical advice, ask your healthcare provider.

That is pretty good, a pretty good introduction. I say everything, but when I say that I’m 40, it sounds awful, right?

The tone in my voice is just, I’m like, “I’m 40 years old,” like it’s … Anyway, awful. Another thing that is awful right now is that my face hurts with awful pain. It’s just awful. I told Nami, it’s like I’m having brutal thoughts, like, that if the pain got any worse, I might bash my skull in with a rock, you know? I’m like, I have to think about that. I’m like, “If this gets worse, what am I supposed to do?” It really hurts. Trigeminal neuralgia, it hurts. I don’t want to be a complainer, but it hurts.

Last night I had 40 minutes of terror between 10:40 and 11:20 last night.

It was straight up awful, with throbbing electrical pain. It was terrible. And I’m screaming, I’m moaning last night. Finally, it’s Friday today. Thursday night, my kids came back. They spent Wednesday and Tuesday night and Monday night at their grandparents’ house because I couldn’t have them around. I was really having trouble.

It was terrible. And I’m screaming, I’m moaning last night. Finally, it’s Friday today. Thursday night, my kids came back. They spent Wednesday and Tuesday night and Monday night at their grandparents’ house because I couldn’t have them around. I was really having trouble. That was awful.

I like my kids, man.

I wanted to have them here. To not have them here was awful, and I’m in this terrible pain at the same time. It was like … But then they came back, and I was like, almost bashed my brain out with a rock again last night, the 40 minutes of hell. It was just throbbing electrical pain in the right side of my face. Even right now as I talk to you, when I say certain words, it hurts. But it’s kind of pumping me up to make a good episode, because I’m like, “This is so painful, it has to be good.”

So my kids went away. That was awful. I love having my kids around. They’re great, and no matter how hard, how bad my face hurts with trigeminal neuralgia, I really want them around. But it was where, yesterday, sound was affecting me, like washing the dishes, listening to, admittedly very, very grating, harsh noise music, which I don’t know why I was listening to that in this condition, but it set me off. And I’m just throbbing.

My kids had to go away. It was terrible. I couldn’t deal with myself. I was really in … It was just too much. But I got them back, they spent last night at my house. My mom picked them up for school, took them to school. That made me almost start crying in the driveway. I mean, we’ve talked about emotional regulation difficulties because of brain damage in my brain stem, but watching them, it really affected me. I wanted to take them to school.

I didn’t want my mom, who really helps me, to use my gold coins.

She’s always helping me. I don’t want to have to have her pick up the kids and take them to school if I don’t need to, right? She’s a valuable resource. She’s part of my support team. And so, having her( do that) … I want to take the kids. I haven’t even had them in my house for three days. It’s my kids. I get power from them. A lot of time we talk about how I get power from nature. I get power from my kids, totally.

I’ve been also in the yard definitely undergoing pain plant therapy.

The way I do it is I just, I’m in so much pain, and it spasms and throbs, and it’s difficult even to talk about. But it’s so overwhelming, and I need to get it to stop throbbing, stop coming back. It’ll start going away for like five seconds and then coming back. It’s so hard. Over and over.

So how do I get it to stop? I stare at plants in my yard. I have a bunch of trees and bushes and vines and other … you know, plants. You ever seen them? So I look at the plant, and I try and discern its structure, its leaf structure. I don’t know anything about plants, okay? So I’m not a botanist, just right out of the gate. I’m all wrong. But I look at them, and I try and pay attention to them. You know, I’m an artist, I was trained in drawing, and seeing. And so, that’s kind of what I use. I look at the plant, I see what the structure of this object is, and the leaves and the flowers, and some have blossoms and some are like vines. So I try and discern that.

And if I can get away from the pain, and start using my kind of visual sense, the visual sense is near … I was told by a friend who’s a librarian, and that’s halfway to a doctor, so she told me that the visual center in your brain is next to your pain center, or even maybe she told me they’re one and the same. And so, if you have chronic pain, you look at things to distract yourself.

So that’s what I do, pain plant therapy. I look at the plant and I try and understand how it’s built, and what’s close to me, what’s far away. And I look, even though plants have a lot of leaves, and I look at, I try and look at every leaf on a plant. And that is like a meditation. I don’t think you can do it. I can’t do it. And so, I use this plant therapy now, I’ve been using it to try, I stare out the window and try and understand my yard, and get away from the throbbing pain.

Yesterday I was out in the yard at dinnertime, I grilled some chicken.

I was watching that Salt Fat Butter Acid thing, and I don’t think butter is in it actually, now that I think about it, but it should be, because butter is so … Butter makes everything better. She probably could do a whole one just called Butter Butter Butter Butter, All About Butter. So I was grilling chicken, she gave me the idea. She roasts some chicken that she marinates in buttermilk. And I’ve been making yogurt. Actually Nami’s been making yogurt, quite wonderful. And I’ve been marinating stuff in that. I put one cup of yogurt and one teaspoon of curry powder. And it’s kind of against my philosophy of Indian food. Any Indian chef would be like, “What are you talking about,” but I apologize, but I’ve cheapened and made a tawdry Indian food grill.

So I just cut up a chicken. I’ve been asking the butcher, “Can you cut the chicken into 10 pieces?” That’s the two breasts, the two thighs, the two drumsticks, the wing jointed into two pieces. That’s what I put in a bag. So this time I used buttermilk instead because I was inspired by this butter show. I’m serious, I want to write a letter to her boss, right? And be like, “I want a butter show.” So I grilled chicken that I marinated in buttermilk for a couple days. I’ve been having so much pain, I haven’t been able to even get out there, but the kids were back, I wanted to hang out in the yard and I wanted to grill some stuff. So I grilled chicken and cauliflower. Cauliflower is kind of weird on the grill. It was weird.

It was good. Then we went inside, and dinner was hard to eat. I couldn’t really eat it.

I had to sit there and watch, which, actually now, I’m sad to say, I’m used to it. I can watch a bunch of people eat a meal I cooked and not eat anything, and it’s fine. I don’t care. Because it hurts so bad to eat, I’m like, “It’s fine.” So it hurt so bad, I couldn’t eat anything. It was a bummer. Late at night, I forced myself to eat two chicken thighs, and it was so painful. It was the lead-in to the 40-minutes-of-hell pain. It was the beginning act. It was awful.

Tomorrow morning is Koko’s third birthday.

I’m so excited. June 1st. Isn’t that just a wonderful thing, a baby to be born, a girl, to me, on June 1st? It was so special. She is so special. I love to see her. Tomorrow is her birthday. You know I don’t like to party in the afternoon, I get run down. So we’re going to have balloons and coffee and pastry in the park nearby here. It’s kind of a weird park. There’s often people in the park, kind of residential, or you don’t know what the deal is with them, or they’re yelling about something to somebody, you’re not sure about what’s going on … No one is sure. I don’t think they’re sure. It’s an interesting park.

So in the morning, we’ll have coffee and pastry. I hope everything’s cool. We’ll celebrate her birthday with balloons. And I look forward to it a lot. It’s a great thing to turn a birthday, to complete a year. And to be three years old, what a wonderful thing. I love Koko. I love my baby Koko so much. And I’m going to be so happy to see her tonight.

Thank you for listening to the What’s The Matter With Me? Podcast.

Past episodes can be downloaded at Apple Podcasts, WhatsTheMatterWithMe.org, or wherever you get it, wherever podcasts are available.

Shout outs to the worldwide universal sponsor of the What’s The Matter With Me? Podcast, Hoppin Hot Sauce.

Hoppin Hot Sauce, it’s the best hot sauce. Hoppin Hot Sauce, it’s the best sauce in the world. The world. I’m telling you.

Yeah, Hoppin Hot Sauce is a movement. I’m telling you. Check it out, HoppinHotSauce.com.

Thank you for listening to the What’s The Matter With Me? Podcast, season 3, episode 9: Happy birthday, Koko.

Birthday boy

Welcome to the What’s The Matter With Me? Podcast, Season 3, Episode 7: It’s My 40th Birthday

Coming up in this episode: pain and anxiety, brain damage, the beauty of nature. Hanging out in the backyard, it’s my 40th birthday. I’m thankful to be here processing my emotions and symptoms. Come hang out with me.

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 the What’s The Matter With Me? 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. Past episodes can be downloaded on Apple Podcasts or from WhatsTheMatterWithMe.org, or wherever you get it. I’m not a medical professional. Don’t take this for medical advice. If you need medical advice, ask your healthcare provider.

In the backyard

Hi. This is John and you’re listening to the What’s The Matter With Me podcast. I know I sound chilled out, but it’s like 6:15 in the morning. I’m outside my house in the back yard. I woke up around 5:45. I was having kind of some anxiety. My body wasn’t feeling very comfortable, and I wanted to be asleep, right? It’s 5:45 in the morning. I’m like, “No I don’t want to be awake.” But you know I need to go to the gym and get some energy out. I haven’t been there since Monday. It’s been John John’s spring break this week so I’ve been busy watching him.

It’s my birthday

Now it’s my 40th birthday, okay. I’ll drop it on you like that. Today it’s Friday. It’s my 40th birthday. And I’m awake this morning, like I said, feeling anxiety, feeling pain. I’m having trigeminal neuralgia pain in my mouth when I swallow. So I’ll wake up, yawn. There’ll be spit in my mouth and I’ll swallow it and it will hurt real bad. So things complicated this morning, but it is my birthday, my 40th birthday, and I wanted to reflect on that a little bit.

Thankful

You know having MS, having trigeminal neuralgia, getting old. I mean the thing is like everything is hard. All life is suffering. We’ve always got to remember that. To be honest, it’s my 40th birthday and I’m really very thankful … for my family, for my house. Right now I’m in my back yard and it’s spring. There are so many flowers all over the place. It’s beautiful. There are some flowers in the back, they look like sunny-side-up fried eggs. I call them the fried egg flowers.

Yesterday I barbecued chicken out here. We had chicken and grilled asparagus and Nami made potato salad. So we had this meal together, the kids and our family. We ate outside yesterday because it was a little warm. It was probably about 85. So it was nice. We had a good meal, and springtime is here in the garden.

My family, they’re beautiful people. John John went to an aerospace museum yesterday and loved it. He couldn’t fly the fancy flight simulator but he could fly the biplane. I’m thankful for the family. I picked Coco up from school yesterday because Nami was off work. She was here. I picked Coco up and she goes to me, “Papa, it’s your birthday.” And you know, it’s my birthday today, not yesterday, but just that she has some concepts or cares about my birthday. It really made me happy. It touched me.

Feels like an ax chopping my soul in half

And to be out here. To be with the family. Life is beautiful. Nature is beautiful. Even though I feel this horrible pain from trigeminal neuralgia … I described it recently. It’s like an ax. Someone’s chopping my soul in half with an ax. It really hurts. And my arm is really spastic and really clawed up, and my muscle is sore, my arm is sore. It really upsets me to have one usable arm and the other one, it’s kind of not usable unless I can use it as a door stop or something. I can push on things with it, kind of.

Problems compound easily

So, you know, I’m having all this anxiety. That pain, trigeminal neuralgia pain I was talking about, that gives anxiety. You know something my therapist once told me is that when you’re feeling that kind of anxiety, it makes pain worse. You feel more upset when you’re in pain. You know it seems simple idea, right? If something is upsetting you it makes other things that are upsetting you seem more upsetting. If one thing is upsetting you and it alone, that would be that. But if one thing is upsetting you and then something else is, both things feed back off each other. So it’s important to remember that because I am going through a lot physically and it wears me down.

You know I feel really upset talking about it, but I have to bear in mind that a lot is going on and happening. So I have to stay cool really. That’s kind of what I think to myself. I’m like, “Stay cool, Hoppin, stay cool.” So I’m going to turn the page on all these upset feelings. I’m going to stay cool and remember, bear in mind, all this stuff … Being upset makes other things worse. You know if I’m upset it’s going to make my MS worse.

So I’m just going to take a deep breath for a second, and pause.

I’m going to get back to talking about the garden and my family, things that make me really thankful to have reached 40 years old. I’m really proud and I have a lot to look forward to. My kids are going to go through a lot. They’re going to grow. They’re going to have a family. That’s a whole, that’s like …, I’m too emotional. They’re going to grow and have a family. And that’s a great thing.

Animal brain damaged

Something that my neurologist told me, I have a lot of brain damage in the brain stem area. That’s like your under brain, your animal brain. So near that area damage, it can cause you to have a hard time regulating your emotions. I think anyone would have a hard time, maybe. I’m probably being a little bit hard on myself to be like, “That’s why I’m upset.” I’m upset because I’m having pain and I’m awake. Insomnia, anxiety, trigeminal neuralgia, multiple sclerosis … you know, whatever … blah, blah, blah.

I don’t need to list it out, but I’m upset for real reasons. But also I have brain damage in my brain stem and it causes me to have difficulty regulating my emotions. So if I get too angry or if I get in a confrontation, I’ll flip out. People that know me are like, “Oh, that’s why he acts like a total lunatic.” Hey, you guys, this is the secret. I have brain damage in my brain stem. I mean that sounds like a cop out, right? I mean I’ve always thought it must be because I’m a lunatic that I act this way. But it’s because I get whiffed up in the moment and I lose it. That’s with anger. They say the anger is a sword that you wield that also as you use it against your perceived enemy you also are using it against yourself. That’s a big difficulty for me.

Anyway, now I’m hanging out here in the garden and I’m starting to see, “Oh, that plant needs water,” or whatever. Stuff like that. There’s a cat on the fence. Life is good. I’m 40. And nothing like being a gardener in your garden to get your mind off everything except being a gardener. I’m looking at this plant that I planted a few months ago. It hasn’t rained for about a week. And I’m starting to be like, “Does that plant need water?”

One of the complaining episodes

But I need to focus here on the What’s the Matter With Me podcast, and my 40th birthday, and thank you for listening. It’s kind of short episode. A lot of complaining. One of the complaining episodes, processing insomnia, trigeminal neuralgia, multiple sclerosis, pain, discomfort, and anxiety.

Let’s talk about the garden a little bit. I water it all by hand, and that’s a difficulty. But it’s a challenge. There’s no sprinkler. There’s just a hose. So I drag the hose around, and, obviously that’s hard because I walk with a cane. How am I going to carry a hose through the garden? Well, I get it done, but it’s complicated.

Falling in the garden

And last summer I fell a lot during the summer. Like basically every day. I had six tomato plants and four pepper plants. Something like that. And I fell a lot. They didn’t yield very much and I spent a lot of time in the really hot sun dragging the hose around. They yielded a lot. But when I was a kid my grandfather grew tomatoes. He was raised on a farm in Tennessee. So he was a farmer. He would grow tomatoes, and when it was time to harvest tomatoes … I remember it. You know I remember it through a kid’s eyes. Also that’s distorted in a way. I remember the tomatoes covering the entire countertop. He grew Roma tomatoes. He covered the entire countertop with them.

I did pretty good last year. I covered the countertop. I bet my kids got that in their eyes. But this year I haven’t planted tomatoes or peppers, and it’s kind of late to do so. And I think I’m not going to. I’m kind of sad about that because just like anyone I like a homegrown tomato. And also I have this memory of my grandfather and I feel sad that I’m not growing them. But I also feel happy that I’m not going to fall.

I fell so much. It was so hard. Because with tomatoes if you’re watering them by hand, you’ve got to get the hose around the tomatoes. You’ve got to make sure the hose doesn’t hurt the plants and you’ve got to get … It’s just too much for me. My garden is flat, thankfully, but it’s not even terrain. It’s dirt, and mulch, and piles of stuff. So it’s difficult to walk in, which is a good thing. But too much of a good thing can be a bad thing. And I fell a lot last year, so I don’t have tomatoes this year. I’m kind of sad about it but I’m going to be okay with that.

Everything in life is a trade-off. I just hope that I transmitted that tomato lust to my children and that they’ll grow tomatoes. Because it’s a good thing to grow things. We have a lot of fruit, a lot of apricots. Last night at dinner they were looking at the apricots and the figs on the fig tree. I was like, “Don’t touch them or you won’t eat them.” That’s a concept they’re trying to get, is like if you touch the tomatoes … Sorry, not tomatoes. If you mess with the apricots or the figs or any other fruit before it’s ready to be picked it won’t be good when it’s time to pick it. These are common, good sense lessons for a person to learn and to really internalize. My grandfather taught them to me so I’m trying to get the kids to know them.

Birthday indulging

Tonight I’m going to have dinner for my 40th birthday at parents’ house. They asked me what I want. I said, “Let’s barbecue.” I’m a Californian … I’m a barbecuer. People who know me know I love to barbecue. So we’ll barbecue and celebrate my 40th birthday. We already went out a couple of nights ago. Nami and I went to a nice restaurant here in San Jose, and we ate so much, and we drank so much. So I still basically feel hungover from that. It was night before last. I still feel chilled out.

Maybe that’s adding to my anxiety. Remember that saying about how when you feel bad that you can compound upon other challenges you have. So I have a lot of compounding. But the real problem is I’m hungover. I’m going to blame everything on that.

I am here

Thanks for listening to the What’s the Matter with Me? Podcast. You can find it on Apple podcasts, find it on iTunes. Wait, that’s the same thing. I have to learn that. Apple podcasts and iTunes are the same thing. Find it on WhatsTheMatterWithMe.org. You could just Google it, What’s the Matter with Me? Podcast. It won’t be that hard to find I don’t think. And if it is, you can contact me at whatsthematterwithme.org. Send me an email and be like, “I can’t find it. Are you gone?” And I’ll be like, “No. I am here.” I am here. Thank you for listening to the What’s the Matter with Me? Podcast.

Thanks for listening

Thank you for listening to the What’s The Matter With Me? Podcast. You know you can find all the past episodes, there’s like over 50 of them, on WhatsTheMatterWithMe.org and Apple Podcasts, and whatever app you use, just use it. Find the What’s The Matter With Me? Podcast.

Hoppin Hot Sauce is the best sauce in the world

Got to give a shout out always to the worldwide universal sponsor of the What’s The Matter With Me? Podcast, Hoppin Hot Sauce.

Got to give a shout out always to the worldwide universal sponsor of the What’s The Matter With Me? Podcast, Hoppin Hot Sauce.

(singing)

It’s a movement, Hoppin Hot Sauce is a movement, check it out HoppinHotSauce.com

Thanks you for listening to the What;s the Matter With Me? Podcast S3 E7: It’s my birthday.

Welcome Whats The Matter With Me? Season 2, Episode 12: Antacids

  • 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

  • Recap- last episode was all about trigeminal neuralgia support groups, grantwriting – writing an essay, KFJC

Shoutouts 

  • Shoutouts to rocky, she’s emailing me stuff, email me and i’ll give you a shoutout

General Confusion

General confusion and the inability to think of anything much at all last week. 

Giving up everything

I felt like giving up on Hoppin Hot Sauce. It was too hard and nobody wanted it anyway, I thought. I went on for some days like this and I think it may have happened the week before as well. I really felt like quitting and giving up everything. And what was so annoying was I couldn’t even have a thought about that, to evaluate it. There were no brain waves.

Action

I started to question my medication., because I was feeling so bad.   Then on Thursday at the end of the day suddenly I snapped into action and begin to realize just how much I had to do. I had to pay some people and sell sauce and balance my books. I got a haircut and I’ll probably cook dinner for the family. I think it’s going to be vegetable pasta with tomatoes and grilled zucchini and roasted red bell peppers because we have all that around. And lots of Parmesan cheese. 

Antacids

On the advice of my therapist, I started taking antacids with my afternoon pills, not an empty stomach, and I saw an improvement.  I no longer question reality all afternoon.

AI Wakeup

What does my day look like? What does my dad look like? What does my d*** look like?  Why doesn’t artificial intelligence know what I need to see first thing in the morning?

Antacids over AI

In short, antacids are getting it done, and artificial intelligence still leaves much to be desired.

Download

Download the Whats The Matter With Me? podcast on Apple podcasts and whatsthematterwithme.org

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

Welcome Whats The Matter With Me? Season 2, Episode 11: Grantwriting

  • 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.

Shoutouts

Shoutouts to Nat – happy birthday! Shoutouts to Patrick, thanks for the vacation tips, shoutouts to shannon – thanks for reaching out.

Last episode Recap

I interviewed free jazz legend peter brotzmann on the radio, I resigned from my radio show, I had a challenging vacation, im working on Hoppin hot sauce as usual

Trigeminal Neuralgia Haikus

Trigeminal neuralgia support group is pretty intense. People have a really hard time with the pain and it comes very hard and pretty much destroyed their life. Their status updates when they put how hard it is into a one-sentence post it is very Stark to read it.. like a haiku from hell

Grant application

I applied for a grant related to this podcast, to help me increase my internet savvy and learn Techniques to spread this message in a louder voice with greater reach. I don’t know about all that but I can tell you it was great to put together an application. I wrote some essays that really clarified why I am doing This. I’m going to share one here but before I do I want to ask that you please don’t judge me I just tried to write an essay and I’m not great or anything I’m much better at talking like I’m doing right now but anyway here it is:

Q: Why are you interested in disability advocacy? What are 1-2 issues that are important to you and why?

Too often disabled voices go unheard. We are discussed but we aren’t part of the conversation. I have always believed that direct action is the fastest way to instigate change. Our voice is marginalized, and using our voice will make it stronger.

As we tell our stories in our own voices, we create our own representation. We’re represented as living a life not worth living, wirh meager intellectual abilities, unfeeling and incapable of love; as purposeless mistakes. This distorted simplification is very unfair to say the least. To avoid it, we must take back the way we are represented. We are our own best advocates.

In 2017, I created the What’s The Matter With Me? podcast to share my experience as a 39 years old husband and father of two, small business owner with multiple sclerosis (MS). I recorded 33 episodes in Season 1, and I’m currently 9 episodes into season 2. I went online to find podcasts about MS from the patient perspective, and they were few and far between. In response, I started What’s The Matter With Me? to tell my story, so that a story like mine would be told. As I’ve produced the episodes, more and more people with disabilities have reach out to me saying how much it has meant to them. I have created a kind of feedback loop: I support others and in turn they support me. I am in greater touch with my disabled community, especially younger people dealing with disability earlier in life when expectations for robust health can be higher. We need to raise our voices in order to be heard.

KFJC Impact

Even though I resigned from my weekly radio program I am still active at kfjc,. Lst weekend I took my family to a fundraiser event at streetlight records here in San Jose and it was good to see people. And then a couple of days ago I went to the weekly meeting where I reviewed some music and recorded some scripts for production spots that we will make for the fundraiser which is coming up in October.just silly stuff asking for money but I’d like to be part of the community at kfjc which is a bunch of burnout to like music just like I do.

One of the listeners from my radio show has since joined the station. she has some disability and says that I inspired her to join. One day she called during my show and told me that she knew someone else who worked at the station and she listened to my show and she heard from her friend that I was disabled. I encouraged her to join the station because it was rewarding and it was something that a disabled person could definitely do and it was a great group, a great and supportive community So I’m very glad that she joined Kfjc and it was great to see her at the meeting.
that’s another episode in the books thank you for listening.

Welcome to the Whats The Matter With Me? Podcast Season 2, Episode 10: Monterey

  • 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.
  • Download the Whats The Matter With Me? Podcast on Apple podcasts and whatsthematterwithme.org

Episode 9 Recap

Japanese proverb tattoos, swimming while disabled. Posted it on reddit and some folks reminded me how scary swimming can be.

Watering the garden

I watered more this summer, a couple times a week. I haven’t been falling which is good. Because the last time I fell I fell through the fence and it looked kind of rickety for a time.  It’s fixed now.

Peter Brotzmann, the Machine Gun

I interviewed Peter Brotzmann on kfjc. He is a wild free jazz saxophone player who is famous for his rough sounds.  He recorded seminal free jazz album Machine Gun. I got him to admit that he plays sweet and tender now that he is older. And talk about butoh

No more radio gig for a while

Resigned from questionable Traditions.  It was a weekly program on KFJC where I played music from around the world, and questioned it’s validity or value, or something like that.  I must admit to feeling some purposeless. However …

I have a purpose, and it is

Selling hot sauce. I’m starting to write regular emails, reach out to customers and grow my business. I did a hot sauce tasting at a local grocery store where they sell my sauce. It was great to get out there, press the flesh and push the product again, like I did at the Fancy Food Show last season in episode 30. it is exciting but also scary.

I tell myself I know what I’m doing, that I have worked at e-commerce companies before. I’m just generally copying what these bigger companies did and applying it in my little business. I try to get out there and to talk with customers, find new ways to sell products every day. I can do it!

Monterey

We went to Monterey on vacation.  It was frustrating because I felt very limited by disability.

Aquarium

We went to the aquarium which is very beautiful and wondrous. I have a lot of childhood memories there, but in the here and now it was hard to move around in the dark with the jellyfish and crowded area very difficult to walk.  I hope my kids had a good time, I did not.  It wasn’t something I could just go and do — it was very challenging to navigate the experience, the crowds, and my disability at the same time.

Cram it in

When I used to go on vacation I would try and cram everything into my itinerary. Now I need a nap. I need to eat food regularly. I can only travel so far.

On the cliff

I love to see things and experience new things, like anyone. It was frustrating for me to be stuck up on the cliff looking down at my childre playing on the beach and not be able to join them because I couldn’t traverse the rocky staircase. It upset me.

Bathroom death scene

The bathroom where I was staying was big and beautiful, open with a jacuzzi and all covered in stone and it seemed like a total death trap every time I wanted to shower or brush my teeth.

I have such a hard time on vacation because I can’t do what I used to. I need to figure out a new way.

Trigeminal Neuralgia

I’ve been going through lots of trigeminal neuralgia.  I’m switching from one medication to another.  It has benefits, like feeling more awake and present, but the changes in medication exacerbate my symptoms.   More about TN in S2, E6: Awaker.

Thanks for listening

Check out the Whats The Matter With Me? podcast page on Facebook, please review it and like it — help me get the word out. You can email me using the contact page.

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.

 

Studio

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