What’s The Matter With Me? Podcast
My name is John, I’m 40 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.
About Me:
John Hoppin
Creator of the What’s The Matter With Me? Podcast
I am 40 years old, a husband and father of two, and I have multiple sclerosis. I made this podcast to share what I’m going through.
I have multiple sclerosis and that affects my life and work in many ways. I am the host of the What’s The Matter With Me? Podcast where I share my experiences, challenges and triumphs as a patient with MS. The podcast develops my Disability Consciousness and bridges me with my caregivers, doctors, the disabled community, and community-at-large.
Infusion
Podcast: Play in new window | Download | Embed
Subscribe: Apple Podcasts | Android | Google Podcasts | RSS | More
In this episode we’ll go through getting an infusion
I was due for my Rituxan infusion, my primary multiple sclerosis (MS) medication, on January 4th. I called a week ahead. I needed to get bloodwork at a lab and approval from the insurance company. The bloodwork was no problem but the approvals were difficult. I had to be persistent. Before I knew it, I was already a month and a half late.
I worried that I wasnt getting the medication i needed. I fell a few times. I was living in a fog.
I had the infusion yesterday. I feel about the same.
Transcript
JOHN HOPPIN: Welcome to the What’s The Matter With Me? Podcast, season three, episode three, Infusion.
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.
What’s The Matter With Me? is an MS podcast, and it’s also about other things. Past episodes can be downloaded on Apple Podcast, 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.
All right. Season three, episode three. In this episode, we’ll go through getting an infusion, getting medication by infusion. Let me check this out. What’s it say? Infusion is a medicinal term. The slow injection of a substance into a vein or tissue. So, that happened to me the other day. We’ll talk about it, but first, I’ve got to give shout outs.
Shout outs to Rocky. Always to Rocky like I said I would. And shout outs to [Nomi 00:02:00] for going to MS Breakthroughs with me. I bet it was weird. And to Eric and Tracy for letting us invade their house. We went to Sacramento last week. You’ll hear about it in an upcoming episode, so stay tuned.
Infusion. Okay. I was due for, I take Rituxan. It’s my primary MS medication. I take it by infusion, and I was due for it on January 4th. I called about a week ahead, and I had to get blood work at the lab, and approval from the insurance company. Blood work is no problem. You just head down to the lab, they draw your blood, whatever. Chop chop. All done. But the approval was difficult, and I had to be persistent, and before I knew it, I was a month and a half late.
You know, I’m supposed to have this every six months. You know. I was going to have the infusion here. Maybe there. But the bottom line is, I’m late now. I’m starting to worry. You know? And be like, yo, I’m supposed to have this thing every six months, now, it’s seven months. I’m worried about I wasn’t getting the medication I needed. I fell a few times. I had fog, like in my brain, in the afternoon. I couldn’t think of anything. Or in the morning, or really, at any time. I had no energy. I felt like I was totally fogged up. And I’m like, “Is it because my medication is late?” You know. It’s impossible to tell.
But finally, yesterday, I had Rituxan. My wife drove me. It’s in Palo Alto, so it takes like 40 minutes, 45, to get there in the morning. My wife drove me there. She worked remotely from the room where I was getting infused.
It’s a long one. You’re hooked up to the IV machine for over four hours. They give you precursors. I’ll tell you about it. It’s kind of crazy. It’s similar to traveling in that you’re just inactive, but totally drained afterward.
I sat in a big chair. They gave me steroids and Benadryl for the precursor. That’s to reduce chances of infection. They give you all this stuff, but the effect from my end is, like, I’m all pumped up, and also, I got knocked out. So you feel this oncoming rush of steroids. You fill like you can chew through the table in front of you, but then the air gets all thick and gooey. Things get weird, and the medicines like fight each other. It’s a really odd feeling.
It feels cold in your vein. You can feel it at the injection site. They’re pumping you full of this stuff, especially the precursors where they just kind of inject the whole thing at once. Infusion is kind of a slow process, but when they start it off, they give you these big vials of Benadryl and Solu-Medrol, and it makes it cold in your arm. You can feel it. Cold in my veins.
The nurse put an instant heat pack over the IV, and it was warm, and it felt good. I had seen her before. She was from Honduras. She had nice braids. They were kind of intricately woven, but kind of sculptural in the way they piled on top of her head.
I was hooked up to the bag dangling from the infusion pump to go for about four hours. My wife worked from a small chair with one of the bedside tables pulled up as a desk. She had her earphones in. She was on a call across from me, and I kind of fell asleep, I guess.
I woke up at some point. It was the afternoon, a few hours later. My wife had picked up some food from a stir fry place, some meat, vegetable and pickles over rice with garnishes like caramelized onions and sliced hot peppers.
The nurse came in every few minutes to check my blood pressure and temperature, or to check the infusion machine was still dripping, chugging along.
A volunteer reiki master appeared, and she asked me if I wanted a reiki session. I was scared, but I also thought it could be awesome. So I put down my food and my phone. She said, “You don’t have to.” And I was like, “No. Forget it. I’ll put this stuff down. Let’s focus on this.” She came behind me and moved her hands lightly over my shoulders, my head, and to my shoulders again. It was very relaxing and made a welcome contrast to the circumstances.
Usually, I’m pretty skeptical about things like that, but I’ll try to be more open-minded in the future or, at least, that’s what I was like, “Should I get this?” I should try and be more open-minded. It was pretty good.
The nurse came by again to check on the IV line a few times. Finally, she told me I was getting close. Nomi was down the hall interviewing someone. She does crazy work. She could do anything anywhere, I think. The nurse removed the IV and wrapped my arm in a purple bandage. I was ready to go.
Nomi came back. “Arrivederci,” I said to nobody in particular. We drove home to San Jose. Took about an hour from Stanford, Palo Alto. We finished up at rush hour time. I was glad to have Nomi with me for all the help and support, driving me back home. It was amazing. The whole process is taxing. It can be hard driving around, and to have some support is really valuable.
So that’s it. I really got hooked up to this machine. They infused me for a long time. So, that’s kind of it. I want to tell you how it goes. You’re kind of like pumped up. They give you lots of drugs. It’s weird. You pass out. You wake up. Then it takes forever, and then you feel drained at the end. That’s infusion.
So, thanks for listening to season three, episode three of the What’s The Matter With Me? Podcast. Find other episodes at whatsthematteriwthme.org, iTunes, or wherever you get your podcasts.
Check out more of this cool music that I make on soundcloud.com/john-hoppin. J-O-H-N dash H-O-P-P-I-N. The worldwide universal sponsor Hoppin Hot Sauce, it’s a movement. Makes every plate taste great.
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.
Check it out. Hoppinhotsauce.com.
Season three, episode three in the books. Thank you for listening to the What’s The Matter With Me? Podcast.
MS Breakthroughs
Podcast: Play in new window | Download | Embed
Subscribe: Apple Podcasts | Android | Google Podcasts | RSS | More
Attending the MS Breakthroughs Conference
Over the weekend, I attended the MS Breakthroughs event put on by the National MS Society. The keynote speaker was Jeffrey Dunn, director of the Stanford MS Center. The event promised to inform about the current-day MS Breakthroughs as well as the future of MS Research.
It began with a free breakfast. The guy next to me dug in. I’d already eaten. I heard the danishes were good.
Award Ceremony
Someone who raised $250,00, another raised $100,000 & wrote pieces of legislation.. a team of 4 people raised $1.1m. A cool guy who runs a lot of local support groups received an award.
Alameda
Volunteer of the year came from Alameda. I used to work in Alameda supervising down’s syndrome adults at their jobs collecting carts for the supermarket.
You can’t drive 26 in Alameda without the authorities checking you out! It’s locked down tight in Alameda.
Grouping and Splitting
Dr. Dunn started off with some history of the MS Society, and its important role fostering collaboration, explaining the scientific paradigm of grouping and splitting.
Things start far apart and come together, collaborate, and become normalized, then specialization occurs. Repeat process forever.
Biology is complicated
Biology is complicated – the result of complex processes comprised of many interacting components. Why things happen is often unclear.
We need a map
In MS, the immune system attacks the brain. There are at least a few thousand pathways in the immune system – there’s no map. Dunn thinks we need one, because identifying the specific immune pathways driving disease can enable individually tailored treatment
Immune Hypertension
Dr. Dunn suggested that Multiple Sclerosis is an endstage name, like referring to a “stove fire” as a “burned down house”. He said a better name might be immune hypertension.
Thanks for listening
To the Whats The Matter With Me? Podcast
Other episodes at whatsthematterwithme.org, iTunes, or wherever you get your podcasts..
Check out more of my music on soundcloud.com
Hoppin Hot Sauce is a movement!
(Hoppin hot sauce theme)
Season 3 episode 2 in the books! Thanks for listening to the What’s The Matter With Me? Podcast.
Transcript
JOHN HOPPIN: Welcome to What’s The Matter With Me, Season Three, Episode Two, Scene Report: MS Breakthroughs. 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.
What’s The Matter With Me is an MS podcast, and it’s also about other things. Past episodes available for download on Whatsthematterwithme.org, iTunes, and wherever you get it. I’m not a medical professional, and you should not take this for medical advice. If you need medical advice, ask your healthcare provider.
In this episode, we’ll talk about the MS Breakthroughs conference. But first, last episode recap. Something happened at Bill’s Café, and I stepped in a hole, and I was on the radio. Check it out, surf on over to Whatsthematterwithme.org to get the last episode. It’s that time, shout outs to Rocky, always to Rocky. Shout outs.
Over the weekend my wife and I attended the MS Breakthroughs conference put on by the National MS Society. It was at a hotel in San Jose. Jeffrey Dunn, the Director of the Stanford MS Center, was the keynote speaker. The event promised to inform us all about the future of MS treatment. It started with free breakfast. I didn’t get the memo or something, I didn’t realize it was free breakfast. You know when you walk in a room and there’s a bunch of free breakfast, and you’ve just eaten breakfast, and you’re kind of like, “Dang …”
So I sat down at my table. My wife came with me. I sat next to Peter, a Canadian entrepreneur. His current venture involves coaching business people how to work across cultures. And he told me the danishes were good. I didn’t have one, but I admired, from one entrepreneur to another, I admired his gusto for free breakfast.
The Director of the National MS Society spoke, kind of singling out the organization. It was cool, we’ll talk a little bit more about that. But one thing she dropped on us, there was a recent study that came out, and it turns out Americans with MS number over one million, which is over twice the previously reported number. I thought that was kind of interesting.
Okay, so before the keynote address my Dr. Dunn, they had an award ceremony. I guess I don’t read things or pay attention or something, I just had no idea. So all these people are up there. They had research fundraisers, people raising money for the MS Society. Some people raised $250,000. One guy did $100,000 and wrote five pieces of legislation, and went to Sacramento and got three of them in with the representative somehow. I mean, this is crazy. Four people raised $1.1 million.
There was a cool guy, he runs a lot of local support groups, he has MS … He received an award. The volunteer of the year came from Alameda, and I used to work in Alameda, a little island right off of Oakland. I worked there supervising down syndrome adults at their jobs, collecting carts at the supermarket. And I found out, I was 20 or 22 … I was too old to have such a low paying job I think. I needed to get my act together. But I sat around all day reading the newspaper and supervising adults. But I found out on my breaks, you can’t drive 26 in Alameda without the authorities checking you out. They have it locked down in Alameda. Congratulations to the volunteer of the year, who’s name I didn’t write down. But it’s all love. Alameda, baby!
All right, Dr. Dunn got up, it was time for the keynote address. He started us off with some history of the MS Society. It began in 1945. A lady named [Sylvia Clarke 00:05:49], her brother got this disease. She made a New York Times ad, and it read, “Multiple Sclerosis: Will Anyone Recover From It? Please Communicate With the Patient.” And 54 replied. No one had a cure. And all 54 begged for help.
So this is this thing called splitting and grouping. So there were MS cases, but they were all far apart from each other. And they were all kind of isolated, spread out. So they formed this MS society. People started working together, became together as a group. They defined multiple sclerosis, and then from that they split again to specialty classifications, like classic MS or opticospinal MS, primary progressive, and so on. Group and splitting, that’s the scientific paradigm.
And I got a footnote here, according to this guy [Coon 00:07:01] in [inaudible 00:07:02], a loosely characterized group of activities often consisting of competing schools becomes a mature science when a few concrete problem solutions provide models for what good research is in that domain. These exemplary problems come solutions become the basis of a paradigm that defines what it is to do normal science. And specialization is speciation, as scientific progress heightens communication breakdown. Experts doing similar kinds of research come to realize that their use of key taxonomic terms no longer jives with mainline uses. And what Coon calls the No-Overlap Principle is violated. The group is using a taxonomic hierarchy for crucial [kind 00:08:08] terms, and the associated categories that is incompatible with that of the established tradition.
Splitting and grouping. That was a cool idea. That slide really blew my mind. Scientific paradigm, splitting, grouping, and splitting and grouping. Cool.
All right, no more footnotes in this section here. The footnotes are over, take a deep breath. Wow, that was big words and stuff. And it was a cool idea, science splitting and grouping. We’ll split from that section though, and just continuing on … Dr. Dunn, he said, “Hey, there it is. Biology is complicated. It’s the results of complex processes comprised of many interacting components. And why things happen is often unclear.” I guess there is some long words there, sorry about that.
In MS, the immune system attacks the brain. That’s what happens, that’s why people have problems. Symptoms become visible because the immune system is turning your brain into what they call plaque. You ever scrap plaque off your teeth? Anyway, it’s not good for thinking I don’t think. There are at least a few thousand pathways in the immune system, and there’s no map. And Dunn thinks we need a map, because identifying the specific immune pathways driving disease can enable individually tailored treatment.
And then he said something pretty interesting. He said, “Multiple sclerosis is an end-stage name, it’s the wrong name. It’s like calling a fire … If you have a fire on your stove, your house isn’t burnt down, right? But it’s calling what we have multiple sclerosis, it’s like calling a stove fire a burnt down house.” And he suggested the name Immune Hypertension.
There you have it, Immune Hypertension. Thanks for listening to Season Three, Episode Two, The Scene Reported: MS Breakthroughs. It’s a What’s The Matter With Me podcast. You can find other episodes at Whatsthematterwithme.org, iTunes, Google podcasts, wherever you get your podcasts, it’s there. Check out more of the music like this sick background music, Soundcloud.com/john-hoppin. Worldwide universal sponsor, Hoppin Hot Sauce is a movement-
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.
That’s right. Check it out, Hoppinhotsauce.com. It’s Season Three, Episode Two, in the books. Thank you for listening to the What’s the Matter With Me podcast.
Something happened at Bill’s Cafe
Podcast: Play in new window | Download | Embed
Subscribe: Apple Podcasts | Android | Google Podcasts | RSS | More
Something Happened at Bill’s Cafe
I order coffee and toast, John John gets pancakes.
Tap on my shoulder, our host –
“Excuse me sir, is that.. your underwear?”
Injury in the yard
I was working in the yard, fertilizing some yellow cauliflower plants.
I stepped in a hole leftover from when we pulled out tomato plants and I fell to my side. It felt like i tweaked it.
I was in a wheelchair or bed ridden. I had a lot of work to finish before Christmas.
I was on the radio
Last Friday, I hosted the Jazz Collective on 89.7 kfjc.org
This morning at 4am i got this message:
There’s no difference
Its cool to be on the radio where i can have a voice and it doesn’t make a difference that i’m disabled..i like playing records too.
Check it out: Jazz Collective last Friday at kfjc.org
My air name is Hemroid The Leader. i’ll explain later.
The stream is up for 2 weeks.
MS Breakthroughs
I’ll be attending MS Breakthroughs with Jeffrey Dunn on Saturday January 26 in San Jose.
I’ll bring some flyers in case somebody wants to hear a podcast.
Thanks for listening
To the Whats The Matter With Me? Podcast
Other episodes at whatsthematterwithme.org, iTunes, or wherever you get your podcasts..
Check out more of my music on soundcloud.com
Hoppin Hot Sauce is a movement! makes every plate taste great hoppinhotsauce.com
(Hoppin hot sauce theme)
Season 3 episode 1 in the books
Transcript
JOHN: Welcome to the What’s the Matter with Me? Podcast, season three, episode one: Something Happened At Bill’s Cafe.
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.
The What’s the Matter With Me? Podcast Is an MS Podcast, and it’s also about other things. Past episodes are available for download on whatsthematterwithme.org, iTunes, and wherever you get it. I’m not a medical professional and you should not take this for medical advice. If you need medical advice, ask your health care provider.
Recap, recap, I post … man, I get too excited sometimes. Recap, I posted live from the Petaluma Smart Train Station. Check it out, surf on over to whatsthematterwithme.org, season two, episode 16. Check it out. Gotta give big shout outs, big, many thanks, shout outs to Rocky, Shauskin and Patrick, and most of all, especially Nami. Shout outs.
You know, something happened at Bill’s Cafe. I felt that morning when I woke up, I was by my bed getting dressed. It felt kind of strange when I put my pants on. I checked it out. In the leg with my brace, I was putting it on, it felt kind of weird. Then I had my morning, I went ahead, I dropped Coco at school and parked there, walked from the car to the classroom. I was with John John. We all went. I dropped her off, everything was cool, everything was normal. And I took John John to the dentist, and I’ve read, probably on my phone in the waiting room, and it’s all good. It was done and he had a good appointment, we went back to the car, everything normal.
Bill’s Cafe. I went to Bill’s Cafe. Bill’s Cafe is a popular, like, brunch chain around here. So I wanted to take John John for some pancakes. He did good at his dentist appointment and I wanted to reward him. So I ordered coffee and toast, and John John got the pancakes, and then I felt a tap on my shoulder, and I looked out and I was like, no. And the host, the host was there. It’s 11:00 AM, there’s like a coffee shop vibe all around. People who were eating Brunch at 11:00 AM on a Tuesday, you know, it’s an interesting scene. It’s like retired people, and weirdos. And my dirty underwear that I wore yesterday is in the middle of the floor.
The guy is like, “Excuse me sir, is that your underwear?” I’m like, “Why yes it is,” you know, and so I got it, I stuffed it, I mean, what do you … I can’t be like “No, clean it up,” right? So I stuffed it in my pocket, and I played it off, and I knew I was just like, this, this is like, so … I’m mortified, right? But I’m like, no, do not be mortified. Just play it off. And I played it off, but the pressure was high. My something happened to Bill’s Cafe, my dirty underwear was it. And I felt weird putting my pants on in the morning, you know? Always check your pants I guess, or I don’t know what the moral is here.
Okay, well that’s out of the way. Before the holidays, I had a pretty bad accident. One Sunday morning I was working in the yard, and I was fertilizing some yellow cauliflower plants. We got some yellow cauliflower plants cause we were like, they’re weird color. I thought the kids would dig that. So we also pulled up the tomato plants when we planted the cauliflower, you know, and the tomato plants leftover from the summer, they were big, you know. So they made holes when we pulled ’em up and we forgot to fill ’em I guess, we didn’t really even think about it. And when we pulled out the tomato plants, then I stepped in the hole and fell to my side. And I kinda felt like I tweaked it. It was really hard to get up. Of course I was just about to leave the house so I got mud all over myself. I had to go inside and change and clean my shoe because I got to wear it ’cause my brace is in there.
So I was totally a mess, and it kind of felt like I tweaked it. I went to Oakland, and I met this rad dude, BJ Miller. I’m going to talk about him maybe next episode. And by the time we got home that night, you know we’ve been out all day. It was kinda cool, but then all of a sudden I couldn’t walk. I couldn’t put any weight on it. And then it was just, we had to go to the hospital, get crutches, that didn’t work. So we got a wheelchair, and it took like five days.
Nami helped me get up and wake up, go to the bathroom, get dressed. I was like a mess. And my buddy Manny, he helped me out, came by in the daytime, hanging out at dinner. He was cool, and it was super tough to be in a wheelchair, and bed ridden and … ‘Cause I had kind of tweaked my left hip and my left leg is the one that’s useful. So it was kind of … it was very touch and go. So I was bed ridden and I had a lot of work to do before Christmas, but I couldn’t do anything. I’m on pain meds and it was hard. And people helped me though, and am really grateful that I’ve recovered, but I had a bad accident. I was not digging that.
I was on the radio. Last Friday I hosted the jazz collective on 89.7 KFJC.org. It’s a jazz show. This morning at 4:00 AM I got this message: “Yo, your jazz collective was the stuff, man. I played all of it while cooking dinner and hanging out with friends. Nice balance of easy listening and skronk. OMG it was so phat.” It’s cool to be on the radio where I can have a voice and it doesn’t make a difference, any difference at all, that I’m disabled and I like playing records too. I have a good time. Check it out. Jazz collective last Friday, you can get it from KFJC.org. Just go to the homepage. Click on more from the archive, and my air name is Hemorrhoid the Leader. I guess I’ll have to explain that later.
On Saturday, January 26th in San Jose, I’ll be attending MS Breakthroughs. It’s an event put on by the MS Society. I’ll bring some flyers in case somebody there wants to check out a podcast. MS Breakthroughs: join us to learn about our progress this past year in accelerating breakthroughs for people affected by MS, what’s in store for the year ahead, and enjoy a research update from our keynote speaker Geoffrey Dunn, MD, professor of clinical neurology and division chief of clinical neuroimmunology at Stanford Neuroscience Health Center at Stanford University in Palo Alto, California. He serves on the chair of the MS section of the American Academy of Neurology and serves on the National Medical Advisory Board of the National MS Society. Jeffrey Dunn at Ms Breakthrough, San Jose, California, Saturday, January 26. The Courtyard by Marriott, San Jose, North Silicon Valley. Register at nationalmssociety.org.
For sure I’ll let you know how it goes. Thanks for listening. Thanks for tuning into The What’s the Matter With Me podcast. Other episodes are at whatsthematterwithme.org, iTunes, or wherever you get your podcasts. Check out more of my music on soundcloud.com/John-Hoppin. That’s J-O-H-N dash H-O-P-P-I-N. And of course sponsor, word from our sponsor. Hoppin Hot Sauce, it’s the best hot sauce. Hoppin Hot Sauce, it’s the best sauce in the world! That we’re not telling you! Makes every plate great, hoppinhotsauce.com. Season three, episode one in the books. Thank you for listening to the What’s the Matter With Me podcast.