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What’s The Matter With Me? Podcast, Episode 8: “Big Week”

My name is John, I’m 38 years old, husband and father of two, radio DJ, podcaster, small business owner and I have MS (Multiple Sc;erosis). I made this podcast to share what I’m going through.

Recap Episode 7: “Bread Moment”

It was very hot, and now it’s rather pleasant. I’ve been having a peaceful week with my wife because when it’s hot I am grouchy. I also told the story of being afraid of Chad Robertson, my bread hero. I baked bread by this guy Chad Robertson. One day I was at a restaurant and I was with somebody who was kind of hooked up and the waiter was like “hey over there is Chad Robertson want to meet him?” And I was like “uh, it’s cool.” I was scared to. I was intimidated, man. Anyway, he makes great bread. It’s a hard story to tell, a time when I didn’t live up to my own standards. Anyway episode 7 check it out.

Big Week

Last Tuesday I got my haircut, my beard shaved, lined up. Elvis at the barbershop did me all right. I was getting ready, I had a big week, so let’s go.

MS Doctor

Later that day I saw my MS doctor for my annual checkup. We reviewed my MRI, and I am in radiological remission, which means nothing is showing up on my MRI, which means I’m not getting new brain lesions or other disease activity that the MRI scan can see.
Then we took a trip through my brain, it was kind of cool. My doctor was like, “Okay let’s look at your MRI. This is how it works top down.” He starts going through the images, wow.
We took a trip through my brain. My doctor noted that my cerebellum is pretty clean. That’s like the top of my green, the big brainy part. But my brain stem has a lot of lesions, and they are old lesions. They affect my ability to walk, swallow, get up and talk actually. All the stuff I know because I experience it but it was interesting to learn that is caused by lesions in my brain stem.

Rituximab

We’ve decided to continue my current treatment which is rituximab, that I take in a 4-Hour infusion every 6 months. We were all shocked to learn I was about six weeks late for my rituximab infusion, and I guess it fell off the table. After the appointment, the staff and I scheduled it I’m going to have an infusion on Friday in a couple days time. Even though we scheduled at the last minute, they hooked me up. Stanford, shout outs.

The studies on rituximab are 18 months long. I haven’t reached that time yet so we’re going to continue my treatment, even though obviously I’m not healed and I’m still experiencing walking swallowing and thinking problems, among other things.
I told my doctor about this podcast, I told him to check it out. He was pretty stoked actually. I told them that I do this for my own therapy, to get better, which is why I do it, it makes me stronger to do so I love sharing. Boom! I’m stronger now.

Then on Wednesday, the next day I got a new ankle-foot orthotic brace which helps me walk, and not sprain my ankle and have balance. It’s good!

AFO: Ankle-foot Orthotic

But it was kind of a mixed bag. I wore the new ankle-foot orthotic, they call it an AFO.

begin transcript

What’s the Matter With Me? Episode 8.

Yeah. It’s “What’s the Matter With Me?” Episode 8. My name is John. I’m 38 years old. I have MS. I made this podcast to share what I’m going through.

Recap episode 7, it was very hot. And now it’s rather pleasant. I’ve been having a peaceful week with my wife because when it’s hot, I am grouchy. And I also told the story of being afraid of Chad Robertson, being my bread hero. I baked bread by this guy, Chad Robertson. One day, I was at a restaurant, and I was with somebody who was kind of hooked up and the waiter was like, “Hey, over there’s Chad Robertson. You want to meet him?” I was like, “Uh, it’s cool.” I was scared to. I was intimidated, man.

Anyway, he makes great bread. It’s a hard story to tell, a time when I didn’t live up to my own standard. Anyway, Episode 7. Check it out. Last Tuesday, I got my haircut, my beard shaved, lined up. Elvis at the barber shop did me all right. I was getting ready. I had a big week, so let’s go.

Later that day, I saw my MS doctor for my big annual check-up, and we reviewed my MRI, and I’m in radiological remission, which means nothing is showing up on my MRI, which means I’m not getting new brain lesions or other disease activity that the MRI scanner can see. Then we took a trip through my brain. It was kind of cool. My doctor was like, “Okay, let’s look at your MRI.” He is like, “This is how it works, top-down.” He starts going through the images. Wow.

We took a trip through my brain. My doctor noted my cerebellum is pretty clean. That’s like the top of my brain. The big brainy part. But my brain stem has a lot of lesions, and they’re old lesions. They affect my ability to walk and swallow and get up and balance and talk, actually.

All the stuff, I know this stuff because I experience it, but it was interesting to learn that it’s caused by lesions in my brain stem. We decided to continue my treatment, which currently is rituximab, that I take in a four-hour infusion every six months. We were all shocked to learn I was about six weeks late for my rituximab infusion. I guess it fell off the table. We scheduled it up. I’m going to have an infusion on Friday, in a couple days, scheduled last minute. They hooked me up. Stanford shout-out.

The studies on rituximab are 18 months long. The study’s in. I haven’t reached that time yet, so we’re going to continue my treatment, even though obviously I’m not healed, and I’m still experiencing swallowing, walking, and thinking problems, among other things. I told my doctor about this podcast. I told them to check it out. He was pretty stoked, actually. I told him that I do this for my own therapy, to get better, which is why I do this. I share this story because it helps me, makes me stronger to do so. I love sharing. Boom! I’m stronger now.

Then on Wednesday, Wednesday, next day, I got a new ankle-foot orthotic, which helps me walk and not sprain my ankle, have balance and stuff. It’s good. But it was kind of a mixed bag. So I wore the new ankle-foot orthotic. They call it an “AFO.” I wore the new AFO on Wednesday, and it’s not quite the right fit. It’s too tight on my ankle, and it caused a very severe pinching, shooting, piercing nerve pain that is too much to ignore. So I haven’t worn it since I got it because I wore it for a few hours, I started having pain. I was like, “No more of this.” And I need to go back and have the orthotician, Miguel, do some adjustments before I can wear it again, but it’s a new brace, and it’s clean, and it looks better than my old one, and while I was in the orthotics place, they fixed up my old brace to give new straps on it. It looks less janky.

You know, just imagine if you had to wear a shoe every day. It would get janky after a couple years. What janky means is, you know, it just … Look it up, man. So hook me up with that. I’ve got to give a big shout-out to Miguel at the orthotics spot near Menlo Park. They hooked me up with a new look brace. Even though the new one isn’t quite right yet, the old one looked so much better. Thank you, Miguel.

Then on Thursday was my radio show. I looked over the playlists. I played a lot of very questionable music from other time periods like the late ’80s and early ’90s, in which we had a different view of world music. Like anthropology had a different goal. It was like, “We’re in this music. Listen to it.” And they kind of changed it in a way that I think today they wouldn’t allow. They got their hands, like Peter Gabriel and people, got involved with music. They did something awesome, and I love playing it, but it’s questionable.

It was very questionable and complicated, not resolved, all the things I enjoy very much, though. The show was good. Then I went to talk therapy after my show, and we talked about poverty pretty much the whole time. My therapist had been to a conference in Sacramento, and he rode his mountain bicycle through Sacramento, and he saw so many homeless people sleeping on the ground with their bodies pressed to the cement, in like 110-degree heat.

And right now, I’m reading Paul Collier, The Bottom Billion. The theory of The Bottom Billion is that there are one billion people being left out of the developing world. And it’s causing problems for our world, the developed world. For example, the people, there are people in Nigeria and Kenya, failing states, and in Afghanistan and Somalia. So it’s not quite a place. It’s like Africa plus, he describes it.

Basically, generally, he says that we have beautiful nature. We have invented technology, and we have law that makes things fair. So nature, plus technology, plus regulation equals prosperity. And, you know, if you don’t have these three things working together, you can have plunder and starvation. If you don’t think about it, if you don’t have laws, then you just have plunder. People take what they can. And if you have stupid laws getting in the way of the wonderful technology we’ve made, you’ll have starvation because there’s too many people in the world.

And on Sunday, it was my wife’s 40th birthday, my beautiful wife. And we have a bocce ball place in Fremont. There was a brunch buffet and bocce ball. It was good to see everybody. A lot of friends, kids running around. I loved it. Some friends I hadn’t seen in a year and their kids, and my wife looked beautiful, captivating, as always, on her 40th birthday. I’m a lucky man. I love her, and we have a strong bond.

Yesterday was the Fourth of July, and we barbecued hamburgers and hot dogs and vegetables, and my wife made some cole slaw, and everything was wonderful and beautiful. The garden looks great right now. My wife had a birthday party, and conversations made note because of social media, you don’t see people as often, and I got self-conscious. I started thinking, “Oh, am I shocking because I’m disabled and I have a cane?” And I don’t really feature that in my newsfeed.

But the point of what they’re saying is probably that it was good to see people because it was. That’s “What’s the Matter with Me?” Check it out.

Yo, next time!

boule

Bread Moment

My name is John, I have MS, I’m 38 years old and I started this podcast to share what I’m going through.

Recap Episode 6

Episode 6: “Overwhelmed” was short but impactful the way short things can often be. Like Mike Tyson said, “Everybody has a plan, until they get hit in the mouth.”
Last episode was basically nothing but a long recap, and then I got distracted telling how I made tomato sauce. I gave up and I just stopped the whole thing after like two and a half minutes.

It’s very hot right now

It’s hot outside. I fell down yesterday in my garden. My thoughts bubble up through my mind like my mind is full of mud, like a primordial ooze and my thoughts bubble up through it. They come very slow, I’m like, “me hungry.” It’s like that.

Uhthoff’s effect

I feel some fatigue from Uhthoff’s effect, which was discovered in the 19th century by a German neurologist who discovered that people with MS feel bad when they’re in the sun. I totally agree with this.

Too much argument

I’ve been having a lot of arguments with my wife. I’m super short-tempered. I argued with my wife on Friday, Saturday, Sunday, Monday, Tuesday and today, Wednesday, even though I saw her for only 5 minutes this morning I managed to get upset with her.

Being a salamander

It’s so hot I just don’t move. We call it being a salamander.I try and sit there and do as little as possible.

Josh is baking

My friend Josh is talking to me about baking bread and reallystimulating. I used to make a lot of bread. I’m in the hot sauce business, but I thought about making bread and coffee and I still think about it. I love making bread and growing plants. I’m a gardener, you know it’s all like making bread, growing your family it’s all the same having a garden, pruning a plant. So it is stimulating to hear that Josh has been baking bread.

Dinner with Margarita

One time I went to dinner with my friend Margarita. She was the bartender at Casanova in the Mission on Valencia Street and across the street is this Mexican spot Puerto Alegre. They really had kinda Tex-Mex, it wasn’t high on the list for Mexican places but they served a blended margarita in pitchers and when I was in my twenties, I would just wonder, how many pitchers did I drink?
So I went over there with Margarita, I was in town from New York where I was living in Brooklyn at the time, I was visiting town. I looked up Margarita and we headed over to Puerto Allegre, and Margarita is a Mission bartender, she’s been a bartender at many bars in the mission for a long time, like 20-something years, and she knew everybody. When we went to Puerto Allegre, she knew the waiter, and he said, “Oh hey Chad Robertson is over there you know those Tartine bread guys?” Actually he said, “You know those Tartine Bakery guys? But I knew them as Tartine Bread guys because they had a book about how to make bread that I would obsessively follow in my Brooklyn apartment.

Chicken

It was an amazing moment, Chad Robertson sitting across and Margarita there, and I had one of those moments in my life, where I totally chickened out. I didn’t get up and say, “Oh my goodness Chad Robertson I have been baking your bread every day but I am quite an amateur and I bet you have so much to say, so interesting, I’m so glad to meet you,” – no, I did none of those things, none of that. I stayed in the corner and I was like, “oh cool.”

Tell your hero

It haunts me to this day. So it’s good to say in this podcast. One of the things that’s what’s the matter with me is I regret not meeting Chad Robertson and the other Bakers from Tartine Bakery. It was 2008 at the time and this was very interesting stuff. Nothing happened, because I chickened out.
Don’t do that, is my advice. If your hero is sitting across from you, and somebody asks if you want to meet them, you should say, “Yes, I want to meet them right now.” Tell them how much they mean to you and tell them they’re your hero. I wish I had told Chad Robertson that.

begin transcript

What’s The Matter With Me? episode seven. What’s The Matter With Me? episode seven. My name is John. I have MS. I’m 38 years old. I started this podcast to just share what I’m going through.

Let’s recap episode six. Episode six was a short one, but impactful. The way short things can often be, like Mike Tyson said about impact, he said, “Everybody has a plan until they get hit in the mouth.” last episode was basically nothing but a recap, a long recap, and then I got distracted while I was explaining how I made tomato sauce and I gave up and I just stopped the whole thing after it like two and a half minutes.

It’s very hot right now. It’s hot outside. I fell down yesterday in my garden and my thoughts bubble up through my mind like my mind is full of mud and like a primordial ooze and my thoughts bubble up through that. So they come very slow. I’m like, “Me hungry.” It’s like that and it’s a fatigue and they call it Uhthoff’s effect. It was discovered in the 19th century by a German neurologist and I don’t really want to talk further about that, but you figure it out, and people with MS feel bad when they’re in the sun and I totally agree with that.

I’ve been having a lot of arguments with my wife. I’m super short tempered. I’m a jerk, I think, and argued with my wife on Friday, Saturday. Okay, first of all, today is Wednesday. I argued with my wife on Friday, Saturday, Sunday, Monday, Tuesday, and today, even though I already saw her for only five minutes this morning, I managed to get upset with her. It’s so hot. I just don’t move. We call it being a salamander, like I just sit there and do as little as possible.

My friend Josh has been talking to me a lot about bread and really stimulating me. I used to make a lot of bread. I’m in the hot sauce business, but I thought about making bread and coffee. I still think about it. I really love making bread and growing things. I’m a gardener, you know. So making bread and having a family, it’s all the same, having a garden, pruning up plants. So it’s stimulating to hear that Josh is making bread. So that one time at Puerto Alegre, I was at dinner with my friend Margarita. She was the bartender at Casanova over in the Mission on 16th street and right across the street is this Mexican spot, Puerto Alegre. They really had kind of Mexican as the neighborhood goes. It’s not like a high on the list for Mexican food, but they serve a blended margarita in pitchers.

When I was in my twenties, I would just… How many pitchers did I drink? So I went over there with Margarita. I was in town from New York actually. I was living in Brooklyn at the time, but I was visiting town. I saw Margarita. We headed over there Puerto Alegre and Margarita is like a Mission bartender. She’s been a bartender in many bars in the Mission for a long time, like 20 something years and so she knows everybody. So we went over to Puerto Alegre, she knew the waiter and the waiter goes, “Oh, hey. Chad Robertson’s over there. You know those Tartine bread guys?” Actually he said, “You know those Tartine Bakery guys?” But I knew them as Tartine bread guys because they had a book about how to bake bread that I would obsessively follow in my Brooklyn apartment.

So it was like this amazing moment, Chad Robertson sitting across and Margarita there. This is one of those moments in my life where I totally chickened out. I didn’t get up and go, “Oh my goodness, Chad Robertson. I’ve been baking your bread every day. I think I am quite an amateur and I bet you have so much to say and so interesting. I’m so glad to meet.” No, I said none of that. I stayed in the corner and I was like, “Oh, cool.” It haunts me to this day so it’s good to say in this podcast. One of the things that’s What’s The Matter With Me?, I regret not meeting Chad Robertson and the other bakers form Tartine Bakery, probably the most… I mean, this was 2008 at the time. So this is interesting stuff, nothing happened because I chickened out.

So don’t do that. If your hero is sitting across and somehow they’re like, “Hey, do you want to this guy?” You should be like, “Yes, I want to meet that guy right now,” and tell them how much they mean to you and tell them that they’re your hero. I wish I had told Chad Robertson that. The bread, I go to Tartine Bakery, every time I’m in the city, I have a Hoppin Hot Sauce account, shout outs Hawker Fare Holy Mountain, the bar upstairs, they got fried chicken. You can get Hoppin Hot Sauce to put on your fried chicken. I bet it’s good. Shout outs to Holy mountain on Valencia and 18th, between 17th and 18th, I think it is. Anyway, when I’m in town dropping off hot sauce orders over there, I always go to Tartine bread, pick something up.

So proud to be able to bring back our croissant or whatever for my family, like I’m a traveling salesman, have this wonderful merchant pleasure of San Francisco. I’m happy about it. I didn’t get up and say how much I appreciate Tartine Bread. But anyway, I still go there and stand in line and pay good green bucks for some that good quiches and pastries and gougère and all kinds of good stuff they make there. Anyways, it’s making me want it right now, like this is become an ad. Anyway, that’s what happens when you regret things. All of a sudden you’re making an ad you didn’t mean to make. What’s The Matter With Me? episode seven.

sauce pan on stove

Overwhelmed

In Episode 6 I get overwhelmed and hang up the headphones in the middle of the episode. On the one hand, it’s a pretty terrible episode because of that, but on the other hand, it is good to know that I can feel bad and recover. I certainly don’t feel this way anymore. It’s hard to slur your words on the mic.

Books / Can’t do what your parents do

A listener wrote in to correct me about some books that I touched on in the last episode and I took this opportunity to set the record straight. Tony Robbins wrote Awaken the Giant Within. Dale Carnegie wrote How To Win Friends and Influence People. Steven R. Covey wrote that 7 Habits of Highly Effective People.

Good information

My Mom had these books and that’s why I avoided them. I was a childish child. They probably contain a lot of good information.

All right?

I feel all right. I don’t have to go to the doctor.

Sauce

I made tomato sauce with 5 tomatoes that I grew. I have a hard time explaining how I made it. It gets hard for me to talk, hard to say “5 of them”. I’m slurring my words. I get frustrated and hang up my headphones. I’m feeling pretty low, after all.

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