Tag Archive for: medication

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Welcome to “Burnin’” on the What’s The Matter With Me? Podcast

In this episode, I’m still recovering from my last rhizotomy procedure, managing to get to get new footwear, and get out to a show in my wheelchair

Burn Victim

  • Chemical Burns melt your flesh.
  • I have 5 Burns about as big as a dime each.
  • I am using Medihoney, and I was initially confused by the name

They Look Like Sneakers

  • I got new shoes to wear when I’m on my wheelchair. For the past couple of years I’ve been using Minnetonka
  • I’m switching to white Vans slip-ons

Tiitration Blues

  • I am scared that if I reduce medication that the pain will come back.
  • But I need to reduce the medication so I can enjoy my life.

William Parker’s New Heart Trio

  • I rode my wheelchair to see the bassist William Parker (71) at the chapel
  • In the New Heart tTio with William Hooker (76) and Isaiah Collier (23)
  • My buddy Joe was the driver

Titration Blues, Pt. 2

  • I reduced my medication and the pain came back in the night

Parting Shots

  • I need a new butt cushion for my wheelchair
  • My son is at home because he has Covid
  • Max Headroom was a guy wearing a mask

This week’s selfie

selfie
Burnin’
No More Painkillers cover
NO MORE PAINKILLERS: After successful surgery, I’m off of painkillers for the first time in seven years.

Welcome to What’s The Matter With Me? Podcast, “No More Painkillers”

It’s a big day for me because I’m finally free of trigeminal neuralgia pain after successful rhizotomy surgery last month. It’s been seven years that I’ve been battling the disease and it feels like a major victory.

  • Shoutouts to Jersey Girl who told me about the Superfest Disability Film Festival happening in Berkeley & San Francisco later this month.
  • Claude Hopper wrote in to say he had a Chubb Rock record
  • Year Of The Tiger by Alice Wong
  • I sent Original Flavor to Amazon for restocking
  • Help support the kids’ school fundraiser by using this link to look through the catalog. for chocolates
  • ICYMI: I recommend the Gary Cannone Interview Special
  • I’m off pills and in withdrawal again – but its GOOD- I can go to my right better and stand on my own 2 feet’ easier
  • I am tolerating alcohol a little better so i can split a bottle of wine with dinner
    • Knock on wood- famous Last words- throwing triple hexes over my left shoulder
  • I am not adult enough to appear in a zoom meeting
  • Musk is back at it
  • A picture is worth a lot of these
  • “Last night for dinner” Journal: Cauliflower pasta
  • We’re going to the ranch

This Week’s Selfie

No More Painkillers selfie
It’s wild

Pain / Withdrawal Cycle

Swallowing Evaluation AKA Diagnostic Fluoroscopy

Had pain and went to the Nurse Practitioner ..

Medication (mis-)management traps me in the the pain & withdrawal cycle. Read more for my visit to the nurse practicioner, diagnostic fluoroscopy, postlude with John John & more.

Read more

In this episode we’ll go through getting an infusion

infusion noun
the slow injection of a substance into a vein or tissue.

Google Dictionary

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.

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

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.

  • 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.

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