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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.

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.