#1794 Had Enough - Part 1

Summary

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Juicebox Podcast: Type 1 Diabetes

Episode #1794: "Had Enough – Part 1"
Host: Scott Benner
Guest: Justin
Date: March 10, 2026

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Episode Overview

This episode explores the deep frustrations and challenges of living with type 1 diabetes through the lived experience of Justin, who was diagnosed as a child more than three decades ago. Justin shares his journey from childhood diagnosis in the late 1980s to embracing modern diabetes technology today, venting his anger and disappointment at the slow pace of progress and lack of quality care and information over the years. The conversation is honest, raw, and peppered with humor as both Scott and Justin dig into why so many with diabetes feel “let down,” and highlight the unpredictable ways new knowledge (and community) can transform outcomes.

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Key Discussion Points & Insights

1. Introduction and Justin’s Background

• Justin’s diabetes history: Diagnosed just prior to his 3rd birthday in 1987, now age 41.
• Theme of anger: Justin expresses frustration not just for himself, but for the community (03:13–04:04):

  "I'm pissed off at how let down we are as people with diabetes. ... I don't think we get good guidance from the people that we ought to." – Justin (03:30)

2. Early Memories and Parental Involvement

• Early treatment regimens: Started with NPH and regular insulin, requiring a strict daily schedule, managed primarily by his parents, both involved in emergency services (firefighting and EMS) (05:13–07:16).
• Transition to more modern management: Shifted to pump therapy in the mid-1990s; parents remained deeply involved until pump transition.
• Childhood support: Justin feels he had “a good amount” of family support but is saddened that technology and information were so limited back then (08:52–09:40).

3. On Being Diagnosed Young

• Diagnosis at an early age: Justin doesn’t remember life without insulin and feels, in retrospect, it’s “better” to not know any different—though he resents missing out on today’s technology as a child (09:11–09:40).
• Memorable quote:

  "I have disdain for not having the technology we have today back then." – Justin (09:29)

4. Frustration with Medical Guidance and Information Gaps

• Lack of actionable advice from providers:

  "Why is it that it takes you, some dope from Jersey ... to give me the best therapeutic decisions and strategies?" – Justin (10:17)

• Scott and Justin commiserate on the difficulties of getting real-world strategies from medical professionals and the power of peer-to-peer knowledge (10:10–11:32).

5. Discovering Community and Technology Through Serendipity

• Tour de Cure event: Justin describes a chance encounter at a diabetes fundraising event where he first witnessed “Loop” technology—a DIY closed-loop system using old Medtronic pumps and iPhones—and how this encounter was a turning point (12:20–18:38).

  “We’re like, what the hell is that? ... He shows us ... on his phone, we heard the Medtronic beep. ... Where the hell has this been?” – Justin (17:36–18:13)

• Barriers to Loop adoption: Despite being tech-savvy, Justin still needed community-driven documentation (from Katie DiSimone and the Looped group) to get started—highlighting how inaccessible this knowledge is for most (19:46–21:09).

6. Systemic Obstacles and Provider Reluctance

• Endocrinology office “no lifeguard on duty”: Providers often would not recommend or support DIY systems officially, leaving patients to navigate alone—a recurring frustration (19:31–21:55).
• Scott draws parallels to early tech adoption, likening word-of-mouth sharing to revolutionary products like TiVo—emphasizing the lack of institutional support (22:26–23:32).

7. The Importance of Real-Time Data (CGMs Over Pumps)

• Life before CGMs: Justin shares that pre-CGM, he was only testing 2–3 times a day, often “making guesses.” Seeing CGM graphs and real-time trends was transformative (32:24–33:33).

  “If you want to keep your health where it is without the CGM, you’re going to be testing all the time and trying to fill in those gaps ... with guesses.” – Scott (32:09)

• Both Scott and Justin agree: if forced to choose, they’d keep the CGM over the pump due to its life-changing insight (33:42–34:44).

8. Technological Progress and Emotional Impact

• Bitter about lost years: Justin laments the “lost time,” with decades at poor A1C levels due to inadequate tools and advice (29:26–30:07).
• College management: More minimal care, higher A1Cs (8–10), and only “better” compliance when doing sports. He felt endocrinology appointments were just routine finger-wagging (30:42–31:13).
• Quotable moment on CGM and pump:

  “Now they’re chocolate and peanut butter at this point, right? Like a pump and a CGM ... they belong together.” – Scott (35:21)

9. The Value—and Limits—of New Technology

• Personal milestones: Justin’s A1C dropped from highs in the 8–10 range to below 6 after starting Loop and CGM, along with increased support from his wife (43:59–44:19).
• Unexpected benefits: Improved daily wellbeing alongside lower A1C—e.g., warmer extremities in winter, possibly from improved nerve health (45:03–45:58).
• Humorous memory: Avoided a near-accident as a child by noticing his insulin mix “looked wrong” before an injection (37:16–38:30).

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Quotes & Memorable Moments

• On finding the real help in peer community rather than healthcare:

  "Why the hell is it that it takes you, some dope from Jersey ... to give me the best therapeutic decisions?" – Justin (10:17)

• On the accidental luck of discovering Loop:

  "Dumb luck sitting next to that guy who's got ... one Omnipod looper and one MiniMed looper." – Justin (38:30–39:08)

• On the impact of CGMs:

  "That CGM is so valuable in just keeping your numbers in range ... if you had to give one up, I would give up the pump." – Justin (33:42–34:44)

• On experiencing modern diabetes care after years without:

  "I'm disappointed at the lost time, naturally." – Justin (29:26)

• On family and relationship impact:

  "My wife ... wanted to see me do better so that I’m here longer. When we were dating and newly married ... we would fight a lot [because of my blood sugars]." – Justin (42:31)

• Scott on the perfection of pump and CGM together:

  "Now they're chocolate and peanut butter at this point, right? Like a pump and a CGM ... they belong together." – Scott (35:21)

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Timestamps for Key Segments

• Justin’s Background & Anger at the System — 03:13–04:04
• Childhood Management and Family Support — 05:13–07:16
• First Brush with Technology Limitations — 09:11–09:40
• Discovering Loop & Serendipitous Connections — 12:20–18:38
• Provider Reluctance and DIY Diabetes — 19:31–21:55
• CGM vs. Pump—Which Would You Give Up? — 32:24–34:44
• How Modern Tools Changed Justin's Outcomes — 43:59–45:58
• Near Miss with Dangerous Insulin Mix as a Child — 37:16–38:30

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Overall Tone

The tone is candid, passionate, and often humorous, marked by shared exasperation over the slow pace of diabetes care progress, mixed with the relief and excitement at discovering improved tools and a supportive community. Scott offers empathy and validation, while Justin brings lived intensity to the conversation, advocating for openness, better education, and gratitude for today’s advances—while not forgetting the often-pricey and imperfect journey toward them.

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End of Part 1. Part 2 is available in the next episode for further discussion.

Transcript

[A]

Welcome back friends. You are listening to the Juice Box Podcast.

[B]

I'm Justin. I'm a type 1 diabetic. I've had diabetes since I was just shy of three years old and I'm pissed off.

[A]

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[B]

I'm Justin. I'm a type one diabetic. I've had diabetes since I was just shy of three years old. And I'm pissed off you're mad.

[A]

How old are you now?

[B]

I'm 41.

[A]

You just mad because you're 41. What are you mad about?

[B]

Well, there's that I was more mad when I turned 30. We can get to that later. But I'm just pissed off at how let down we are as people with diabetes that it's so hard and we don't. I don't think we get good guidance from the people that we ought to.

[A]

You're not just mad for yourself. You're mad for the collective community that you're aware of.

[B]

Mostly, yes. Naturally, there are pieces that I think are more attributable to me. But on the whole, it's more for all of us.

[A]

Yeah. Okay. You know, every time my wife leaves to go to a. How are we starting? This is crazy. Every time my wife leaves to go to a gyno appointment, I say, when it's all over, just look her dead in the eye and say so. On the whole, is everything okay? And she won't do it. She should. Well, yeah, right.

[B]

Come on.

[A]

Kelly quite obviously is what should happen nevertheless. Well, let's go back to the beginning. How old were you when you were diagnosed?

[B]

Just shy of my third birthday. That was a month shy.

[A]

Okay, so when's the first time that you, I guess, have recollection of diabetes being in your life?

[B]

The oldest memory that I have is one morning. I was three years old. It must have been shortly after diagnosis. And I must have been whining to my dad, whose name is Kelly. So I've always thought of Kelly as a man's name, but I know that he's kind of a unicorn being a man named Kelly.

[A]

I went to high school with a guy named Kelly.

[B]

Is that right?

[A]

Yeah. What's up, Kelly? If you're listening. Yeah, no, and by the way, everybody, every time you're on the phone for something for Arden, they say he. They just assume Arden's a man.

[B]

Really?

[A]

Yeah. Anyway, sorry, your dad's Kelly.

[B]

I was complaining to him that I had to be awake so early. I was still sleepy, blah, blah, blah. He says to me, well, you had an infection in Your belly. That's why you have diabetes and you have to be up at a certain schedule to eat. And that's why we have to do this. You know, it's not fun. We don't want to do it, but it's what we have to do. Because at three years old, if you've done the math already, that's 1987. So I was on a schedule of NPH and regular.

[A]

Yeah. Okay.

[B]

Unlike today, it's much more time dependent on a daily schedule and using the nph, which has the intermediate action, it's much more difficult.

[A]

Have you and your father, since then, as you've gotten older, talked about it again and again? Or is your understanding of your diabetes come from when you were very young and you guys didn't really discuss it? I guess more moving forward.

[B]

Both my parents and I were quite involved, naturally, being so young, they drove the bus heavily, probably from diagnosis at 3 until 96 when I went on the pump. So they definitely were heavily involved. My dad's been a firefighter since he was 18, and my mom served in and out of the fire department and then on the ambulance squad, I think before I was born, and then through parts of my childhood too. So they very much embraced the responsibilities that were laid out in front of us. And to the best that we could, they went to all the appointments. We managed it a lot with just my pediatrician up until maybe a year or two years before I went on the pump. So a lot of it was only what we learned at the hospital at diagnosis and then through the pediatrician who was very. His guidance and treatment were pretty good.

[A]

Were you doing two shots a day until the pump?

[B]

I think when I was younger, 3, 4, 5, I did two shots a day mixing regular and mph. Then as I got older, maybe 8, 9, 10, it was three shots. There was regular NPH in the morning to cover breakfast and lunch, then regular at dinner and then I think NPH at bedtime.

[A]

So they were starting to make a little adjustments. Did you ever go to more modern, fast acting basal setup or did you go right into a pump? Do you remember?

[B]

Right into the pump, yeah. It went from regular nph, I think, then it went to Humalog and mph. Humalog came out a year or two before the pump.

[A]

Okay. Did that for a little bit, then right into. But they just put the Humalog into the pump and you were on your way. Right. Okay. And is that the point where it sort of becomes your football, they give

[B]

it to you for daily treatment decisions?

[A]

Yes, yeah. So you're. You're bolusing on your. I mean, you're counting carbs and bolusing on your own and stuff like that.

[B]

The carp counting came somewhat from my parents, probably more than me, at least in the beginning. And then certainly testing, because it's this before cgm, so testing was still my responsibility. It was a lot of shared responsibility still.

[A]

Okay. They didn't abandon you? They didn't go, oh, finally, here, kid, get out of here. No, you guys kept it together. So you had a lot of support growing up with your diabetes?

[B]

Good amount, yes.

[A]

Okay, so. So you weren't angry then?

[B]

No.

[A]

No. Okay. So are you one of those people who. You know when people say all the time like, I don't know if it's better to be diagnosed old or young? And the argument for young is, of course, you'll never know any better. Do you feel like you don't remember any kind of life without insulin?

[B]

I do not remember life without insulin, and I would argue that it was better being diagnosed young because I don't know any better. Certainly this far removed, I definitely don't know any better.

[A]

And you don't have a feeling of loss, is that it? Or do you still feeling of loss?

[B]

I don't know. I have. It's not regret, but I have disdain. I have disdain for not having the technology we have today back then.

[A]

All right, you're pissed that you got into the game so early, that they didn't have stuff like they have now.

[B]

I'm disappointed by that. We haven't even gotten to the stuff that makes me angry.

[A]

No, no, don't worry. We're getting to it. Oh, we better take your time, Justin. We want you to yell and scream. I'm good. Listen, I have been for, like, years, hoping people would come on and talk like this. So I'm. I'm up for this. Don't worry.

[B]

Well, it's your fault.

[A]

Wait, wait, it's. It's my fault you're mad?

[B]

Well, I'm. I'm mad at you, Justin.

[A]

I didn't marry you and dedicate my life to you and tell you I love you every day? How. How do you have the nerve to be mad at me?

[B]

Because why is it that people have been treated with insulin for 100 years? I've had diabetes for almost 40. Why the hell is it that it takes you, some dope from Jersey who barely graduated high school, barely, to give me the best therapeutic decisions and strategies and counseling such a goofy word to.

[A]

Because you're no Counselor, I offer my counsel. Let's say it like that. Maybe.

[B]

Oh, fine.

[A]

How come more people don't come on with this awesome, like, vibe that Justin has? I feel like you and I are improving together. This is awesome. I'm having such a good time.

[B]

Well, I have. What my dad's got six cousins from Jersey, so I get you.

[A]

You're accustomed to these conversations.

[B]

I'm accustomed to wacky. People telling you wacky. You think back on it, you know, in the shower a couple weeks later, and you go, oh, my gosh, that's brilliant.

[A]

That guy had a thought, and it was. I thought at the time he was an idiot, but my goodness, it's making sense. That's awesome.

[B]

I mean, he's still an idiot, but, you know, it makes sense in this one thing.

[A]

Justin, I'll accept idiot. I won't accept wacky. What do you think of that?

[B]

Whatever helps you sleep at night.

[A]

Awesome. So you're telling me that even with that pump as a teenager and growing up, you don't feel like this all came together for you till you found this podcast? How long ago was that?

[B]

Let's see. I, on a whim, was looking for help with loop.

[A]

Okay.

[B]

Because I went on loop. Well, so let's back up a couple minutes, please. Back in. I don't know, 2016. My wife's a physical therapist. She was working in a hospital system, but in one of their outpatient offices, she had a patient come in who he broke both shoulders on a motorcycle, spill. And turns out after she talks to him for a while, turns out his wife is a nurse in the hospital.

[A]

Oh.

[B]

So they strike up a conversation sometime. It comes out in conversation that she has type one. From what I recall, she had gestational with her first pregnancy, and it never went away or it evolved after that. So we talk about that. We become friendly and social after that time, see each other more casually. So they wrote me one. Gosh, I think it was a Friday night. And they said, we're both going to this ADA Tour to Cure events up at the center of town, up at the fairgrounds. You want to join us? And my wife was leaving earlier that morning on a plane. So I said, well, I guess I got nothing better to do, and I'll be up anyway. So, yeah, I'll go up for the Tour de Cure thing. They had. She was in the 5k run, and I think he went on the 10k ride.

[A]

Okay, wait. You and your wife. I just want the younger people to hear this when you say you can't meet people. You and your wife now have friends that they met because a man had a motorcycle accident, came into the ER where your wife was during chatting, realized that his wife works with her. They're actually colleagues, and then you guys strike up a friendship together.

[B]

It's true this wasn't at the er, but it was. It was in the outpatient PT stuff.

[A]

But otherwise that's a true story that since, see, you can meet people, you can. That's really nice. I actually find that to be a lovely story. I think it's because I'm older, but I'm so sorry you're at the Tour de Cure. What happened then? The Contour Next Gen Blood glucose meter is sponsoring this episode of the Juice Box Podcast and it's entirely possible that it is less expensive in cash than you're paying right now for your meter through your insurance company. That's right. If you go to my link contour next.com juicebox you're going to find links to Walmart, Amazon, Walgreens, CVS, Rite Aid, Kroger and Meijer. You could be paying more right now through your insurance for your test strips and meter than you would pay through my link for the Contour Next Gen and Contour Next Test strips in cash. What am I saying? My link may be cheaper out of your pocket than you're paying right now, even with your insurance. And I don't know what meter you have right now, I can't say that. But what I can say for sure is that the Contour Next Gen meter is accurate, it is reliable, and it is the meter that we've been using for years. Contornext.com juicebox and if you already have a Contour meter and you're buying test strips, doing so through the Juicebox podcast link will help to support the show. Unlike other systems that will wait until your blood sugar is 180 before delivering corrections, the MiniMed 780G system is the only system with meal detection technology that automatically detects rising sugar levels and delivers more insulin as needed to help keep your sugar levels in range even if you're not a perfect carb counter. Today's episode of the Juice Box Podcast is sponsored by Medtronic diabetes and their MiniMed 780G system, which gives you real choices. Because the MiniMed 780G system works with the Instinct Sensor made by Abbott, as well as the Simplera Sync and Guardian 4 sensors, giving you options. The Instinct Sensor is the longest wear Sensor yet, lasting 15 days and designed exclusively for the MiniMed 780G. And don't forget Medtronic Diabetes makes technology accessible for you with comprehensive insurance support programs to help you with your out of pocket costs. We're switching from other pump and CGM systems. Learn more and get started today with my link medtronic diabetes.com juicebox after all

[B]

the events wrap up, they have a lunch and I hadn't signed up for the event at all. So I figured I was going to go without lunch because, you know, I didn't have the tickets for any of that or whatever. One of my friends gave me their ticket because they went through the line and, you know, being somebody who had a bib on and was sweaty and gross, they're like, oh, yeah, you were at the event. Go ahead, go get your lunch. So they gave me their ticket and I went through and I got lunch. I sat down at the table and there's this older fella who, he's on his phone, tinkering on his phone. And I'm saying, you're at this great event. You're sitting next to like two other people who have all got their phones out, which this is back in 2019 or 2018. So everybody being on their phones all the time wasn't so prevalent. But I'm like, why are you guys tinkering on your phone so much? Why don't you just enjoy the music that's being played?

[A]

Yes. Talk to the people. What are you doing? Head down with this generation. That whole thing, right? Yeah, exactly.

[B]

So I didn't have the nerve to ask the guy any questions. My buddy comes over after he grabs his lunch and he says to this other guy, what are you doing? Or maybe he asked him what pump he had and he goes, oh, I've got Medtronic, but I've got an old one. And then he brings out his phone and he's got loop.

[A]

Oh, he's looping with it. Yeah, yeah.

[B]

On his iPhone. And we're like, what the hell is that?

[A]

Magic sorcery.

[B]

It was magic. You know, he shows us, you know, he's got to take, you know, half a unit for this, I don't know, apple that I'm going to have with my lunch. Types it in. On the phone, we heard the Medtronic beep, you know, the pump beep. I'm like, what the hell is that?

[A]

Yeah. That fries your mind, huh? Yeah. The first time you see that he's on his cell phone and then his pump gives him insulin and without context and, and a life lived the way you Lived. That really must have really seemed awesome to you.

[B]

It was nuts. And I thought, where the hell has this been? He gets into the whole, you know, aid pitch. At first I'm thinking, is he selling this stuff? Like, is he trying to line his own pockets by it? But he goes. He pointed to his daughter or niece or something. She had loop on her phone using the Omnipod. And I'm like, what is that? You can do either one.

[A]

What? It works with yours. It works with the one without the tubes. Like, what? Yeah, yeah, yeah, right.

[B]

I always thought everything was so closed course, closed circuit. That how on earth. Using your damn iPhone. How does that work? What do you mean? So you. We get the whole pitch. We get the whole description from this guy. I got his name thereafter, and I said, well, shoot, I've got an endo appointment in a week or a month or something. It was pretty close. So I mentioned it to my endo np and she said, well, I don't recommend it. I can't recommend it to you, but I have one other patient. I think she said at the time, she had a couple patients on T Slim, right? Which was maybe just getting into the basal IQ thing. And she said, I cannot.

[A]

Justin, did they do this? I felt like somebody had this written down somewhere in those years. I can't support you while you're using it, but I'll keep writing you your prescriptions, which was code for leave us out of it, but I don't care if you do it.

[B]

Sort of.

[A]

Okay.

[B]

She wanted to say, you can try it and, you know, it's like a no lifeguard on duty. Swim at your own risk. But she said, you know, I've got one other patient who as a child, the parents are both in tech and software, so they had the confidence to build it, and they've been doing it and they've been great. Okay, well, I'm in software, so how hard could it be? And thank God for Katie DeSimone to write up the loop docs, because without that even being in software, I do a lot of Microsoft stuff. So all this Apple app development was like, over my head. Thank goodness she does that. So I go through buy the Riley link. Maybe a week later that comes in. Had to buy iPhones because I was a steadfast Android person up until then. And, oh, I think when we were talking about it at the Tour de Cure event, the other guy said that tidepool had just had their press release that they were going to take Tidepool Loop. So I said, well, I'm not going to fart around with trying to do an Android thing. If tidepool is going to get Loop into the App Store and I'm not going to have to build it myself forever, I'll go with them because they're already on the fast track. They're already 10 steps ahead. Let's go with that.

[A]

So it took them a while, but there it is. Twist exists now.

[B]

Yeah, Twist exists. And a fair amount of people from the Loop community early on are working there, which is good.

[A]

Yeah. And they're iterating still like they're updating that app, too. I think that's going quickly and in a way that makes me feel good about what they're doing.

[B]

I do, too. I think that's adding more CGMs, adding more pump manufacturers, I think is a good thing, but leads to the disappointment that in 2019 or 2018, I don't know how long Loop was out before then, but where the hell is anybody to even mention it? Their hands are tied at the doctor's office, so they can't mention it.

[A]

Yeah. I mean, if they even know about it. Right. I don't know how many people have downloaded Loop or Trio, you know, combined at this point, or, you know, Android APS or any of those, really. Like, I don't know how many people said, oh, I'll give it a shot, give me the code. Or, you know, even now it's. I mean, it goes on your phone so much easier now. Right. It's crazy. I don't know. Like, how is a. How is the thing that's DIY supposed to publicize itself other than the way you found out about it, which was being in an event with other people at Type one and somebody mentioning it to you. And I love that you described him as like, you thought he might be selling it at first because that's how stuff like that gets spread around. I felt like that in the early 2000s when I was trying to tell people about TiVo. I'm like, you don't understand. It's like it records it on a hard drive. You can pause it and fast forward. There's a button that jumps through the commercials. And people looked at you like, what are you. You got stock in this or something? I'm like, no, it's just you're so overwhelmed by what a leap it is that, you know, you come off like that when you're talking about it. That's how word of mouth works. My podcast is completely word of mouth. A pump company is not going to tell you about it. Right?

[B]

Well, now they are, because Tandem invites you to Friends for Life or, you know, other events. Omnipod is.

[A]

I'm doing a nice thing with Omnipod next week. You guys will see in a little bit. So I'm saying, like, Pepsi doesn't tell you that Coke is good. You know what I mean? Like, so they're not going to do that. But at the same time, Loop's interesting because it works with those old Medtronic pumps. It works with Omnipod. Listen, I've never had a conversation like this once with anybody, but I'm just going to go out on a limb and say, I don't think Omnipod's allowed to say Loop out loud. That would be a horrible thing for them in the FDA and all that stuff. Grade.

[B]

It's got to be the same with the endos. I know the ADA standards of care just came out where they're pushing endos, HCPs, CDEs to help as much as they can, not solely shut down the DIY stuff, but to say, we'll support you as much as we can. And really, that's what my endo NP said, was that we'll tweak your settings. If you could show me your basils and show me your insulin to carb ratio, insulin sensitivity factor based on what we see from your CGM data.

[A]

They got more comfortable with it as time went on, too.

[B]

I think so. And the commercial adoption with the Medtronic 670 system, that I think was announced very shortly after that, after I started on Loop, maybe that's boosted everyone's confidence,

[A]

wisdom, experience about an algorithm in general.

[B]

Yeah. And how to make productive changes to settings, to algorithms, to basal rates, depending on what they see. Because CGM unlocks all that possibility too.

[A]

Yeah. And I also think that in a world where many endocrinologists aren't comfortable or don't know to tell you to pre bolus or aren't comfortable don't know to tell you that fat and protein might impact your blood sugars later. It's a pretty big leap to think those same people are going to tell you. Like, hey, there's a bunch of people on the Internet writing code that gives you insulin.

[B]

That's what pisses me off.

[A]

I know. Go ahead.

[B]

It's you, the dope from Jersey, who stands up on your soapbox and says, pre bullish your meals. I thought back, I don't know, maybe a couple months ago you were talking with somebody about pre bolusing and maybe they said, that you had to pre bolus with regular because the peak or the onset was so much later than Humalog. I was told going on Humalog that I could just take it because it's onset's in 15 minutes, peaks at an hour.

[A]

Jenny's explained this to me. What her thought about this is, is that so back in the day when you first started like you injected that insulin, it didn't work forever. Right. They didn't even call that pre bulletin. You just had to get it in and then eat at a certain time. And then when they went to insulins that were faster but not actually fast. Where that faster acting insulin name comes from, Jenny supposes is that the clinicians at that time, it was so much faster than what they were using that they called it fast acting insulin. Maybe they should have just said this is faster acting insulin. So then as time goes on and those old people are, you know, gone away and the people who were doing cloudy and you know, NPH and all that other stuff, when those memories kind of fade away, what they're left with is, oh, we have this stuff now. It's modern fast acting insulin. And for the people who were used to you injecting at 8am and eating an hour or so later, this stuff works in like 15 minutes. Like we don't want people to get low. Like, you know what I mean? Like I think it's that slow transition and having to work through people with different perspectives and that's how the naming system gets where it is and that's how the directions get where they are. I actually think she's right about that. I think that's the pathway to somebody not telling you to pre bullis.

[B]

I suspect she's right.

[A]

Yeah.

[B]

Certainly Jenny's had her ear.

[A]

She lived through it too. Yeah, yeah, she lived through that time. Yeah.

[B]

And you know, both as a patient, as she was a teenager, young adult, and then certainly now as a cd.

[A]

Yeah. It's just one of the oddities of having how things make it through society. Why do certain terms and phrases run through the world or you know, like that kind of thing or they somebody puts out a thousand songs every summer when we're growing up, how come two of them hit and everybody knew it? And it's just, I don't know how all that happens. I don't think it's might not even be trackable by a human being. But I think that's how we get to this situation. And then like you said, then somebody's got to say, I don't know. This doesn't make sense to me. And by the way, when my kid gets diagnosed, I have no context for nph. Regular, cloudy, clear, blah, blah, blah. Like, I don't. I'm just here now, and they give me this insulin, and they say, inject this insulin when she eats, and that's it. And then I'm, you know, spending years, like, pulling my hair out with a freestyle meter, you know, and not even pens. You know, no one ever gave me a pen. So needles and a freestyle meter.

[B]

I've never had one either.

[A]

I'm like, I don't know what's happening.

[B]

I lie. I've been given the trial Lantus pens in the event that the pump crept out on me.

[A]

In the two years before we started talking about pumps, when Arden was four, no one ever once said, hey, this is an insulin pen. So I don't. Whatever. But my point is, is her blood sugar shooting up. And, I mean, Arden's blood sugar would shoot so far up, and then I'd stare at it, and then, you know, learn a little more and figure things out. Tiny little increments. But two years into it, I wasn't good at it, still. And then you get the pump, and people like, oh, the pump's gonna fix everything. That used to be how it was talked about. Wait till you see the pump. The pump will take her. We got her on the pump. The pump didn't fix anything. It just stopped me from having to stab her, which was nice, but her A1C didn't move much. And I was like, I thought this thing was supposed to be magic. I mean, it's not until a cgm, right? It's not until we get that first XCOM where I'm like, oh, I can see what's happening now. And then you can fill in all the blanks. Sort of like in Jurassic park, where they have most of the DNA, but not all of it. So they filled in with a frog. And I had a lot of the idea, but not all of it. And this, the CGM was what I needed to fill the slots in that I didn't understand. And then I thought I really understood it, and until Arden got on loop, and then I. Through Night Scout, I could see the algorithm working. And then it really started to make sense to me anyway. I mean. But are you really mad, or are you happy that somebody said it? Or are you more mad about the lost time?

[B]

I'm disappointed at the lost time, naturally.

[A]

Yeah. No, I would be, too.

[B]

CGMs really came into their Own and had a. They became really fruitful and available. What year was that? Like 20. What, 2010.

[A]

You know, it's funny you'd think I'd know when we got it, but I really don't. You know, I think Arden was like six or seven maybe. So I don't know.

[B]

So there was speaking for me, you know, from 87 to what, the early 2000s. There's 15 years at least, where I really didn't have a better option.

[A]

How did that impact your life and your health?

[B]

Oh, I. My wife has told me that one of her old co workers used to write progress notes for someone who would come in with a double knee repair or something like that and go, a patient has enjoyed 60 years of poor health with, you know, high blood pressure and blah, blah, blah. I would have to say that I enjoyed a 1Cs that were from the eights into probably the tens at some points during high school and college. Now, high school, college ages, there's lots of growth hormone. There's lots of other hormones ignoring.

[A]

Right. Did you ignore it in college?

[B]

Ignore what?

[A]

Diabetes. Did you back burner it and just do the minimum or were you. Were you working on it?

[B]

Oh, minimum for sure. My endo. I had the view every three months that I was just going to get the finger wag that test more. Bring these numbers down. Let's see that a 1C drop to below 7, because, you know, I just floated along there. But I can also say that unless I was doing a sport, I didn't go low all that often.

[A]

Yeah, well, your A1C was 10. Your blood sugar was probably over 200, right?

[B]

Yeah, yeah. For good portions of the time. Certainly. Certainly.

[A]

Yeah. What happens then?

[B]

It took seeing the guy at the Tour de Cure event to really impose on me that you can't have this magical system running on the phone without the sensor. So put on the sensor, you get the information, and then you can run with it. Where is anybody to say that?

[A]

Yeah, well, no, listen, I've tried over the years to say that I valuable as I find Arden's insulin pump, and I do, I find it incredibly valuable. If you came to my house with a gun and said, hey, you got to give me the pump or the cgm. Like, I'd throw the pump at you, you know, like, I don't know how to get rid of the cgm, I believe your health is going to deteriorate without it, and I think that your effort is going to increase 20 fold. If you want to keep your health where it is without the cgm, you're going to be testing all the time and trying to fill in those gaps in that understanding with guesses and supposition, so.

[B]

Or you're going to be like me, test maybe three times a day for

[A]

decades, just ignore the whole damn thing

[B]

and just make guesses.

[A]

Yeah, sure.

[B]

I might get. There was a while it was just two tests a day, morning and night, and in the middle of the day, if I didn't go low, I really didn't know where I was. So having that data, even when it was just the end light sensor going to the pump in the first run that I went with loop, yes, it was annoying because there were technical difficulties with the end light sensor, but for some reason it worked fairly well for me. And I could see the graph on the mini med that was saying it's giving me that data. So I could stop some lows, I could stop some highs. I didn't love the eight hour check in for having to calibrate it every eight hours. That was a pain in the neck

[A]

too, but moment in time too. Like they're getting through it. Like, hey, does that anger inside you, does that carry over if you see someone online like, ah, my CGM only made it eight days. This thing sucks. Are you like, shut up, up. Or how does that strike you when people who are newer to diabetes don't have context for what you live through?

[B]

I think the people who are, let's talk about it. If it's a child who's diagnosed, I think the child and the parents are scared, overwhelmed. And you're not reliant on the CGM to administer the insulin. Clearly the insulin comes in pens and pumps and vials and syringes and all that. So you don't need it. But it is so valuable. I agree with you. If I had to give one of them up, I would give up the pump. That CGM is so valuable in just keeping your numbers in range. Even if you do have the spikes up to 250300 after a meal or something like that, at least you know it and you know the pump is wrong. Or you bull us too late or you didn't bolus.

[A]

Yeah, you do something about it. Your blood sugar doesn't stay 250 for a. Right. Yeah, right.

[B]

So when they are upset about the censors. I get it. I do get it. Because we're also paying dearly for them.

[A]

No, yeah, no, I understand. I do too. Listen, you're counting on it. You've paid for it. Someone's promised to you that it does the thing. I understand all that. I do. It's the part where I wish for them. I'm not mad at them. I was just wondering where you are. I wish for them that they knew your story in that moment. I wish that knowledge could kind of flood into their heads and they could feel like, hey, this sucks, but I'm going to call the company and they're going to send me another one. And this is way better than how Justin grew up. I don't want people running around angry all the time. And I don't think that technology is perfect or is going to be perfect anytime soon. I find that it's an opportunity to be upset at a thing that you should be good, grateful for. And I don't want that for people. You know, I mean, listen, I'm not in charge of how you feel, but, like, I hope you could take your anger out on something else other than this thing that you have no idea what it's doing for you. If you don't know Justin's story or, you know, other people who have come before also, now they're chocolate and peanut butter at this point. Right. Like a pump and a cgm. A pump with an algorithm and a cgm. In my mind, I know they come from two different companies. That's it. They're one and the same. They belong together. Now, I know it's important not to pressure people into doing things or to tell them that what they're doing isn't the gold standard, but if you're not using an algorithm, I mean, in my mind, and I don't care. Medtronic twist omnipod.com juicebox for all of them. Yeah, exactly. Links@juicebox podcast.com but like all of the pumps, all the pumps, all the CGMs, those are gold standards. Now, I wish they weren't gold standards. I wish they were commonplace. And that's just what happens, because I think you're going to see a lot of people live a lot longer with far fewer issues as they get older.

[B]

I certainly agree about the cgm, given the value that it adds. Pumps are amazing. I think there's a point of incentive. The incentive for me, when I was first going on the pump, I resisted it for quite a while. And my parents kept nudging me toward the pump. And the big incentive when I finally bit on it was that it was one quote, unquote, injection every three days.

[A]

Yeah.

[B]

As opposed to three per day.

[A]

That was the easy sell back then, right?

[B]

That was the easy sell yeah. At least the most compelling to me. Certainly there's also the advantage of basal rates and only using short acting. No more nph. Because we had a near, I guess, near fatal thing where there was one time I grew up, we had a two family house. My grandma would put me on the bus and take me off the bus as both of my parents went to work. So there was one day. She knew how to give the injections and she would do so, but my parents would draw up the needles or the syringes. And back then it's regular and mph, so it's clear before cloudy. I always used to think, oh, that's kind of a lame, silly thing to say, but there was one day where Graham took the syringe out and it was all clear. At the time, I was probably doing one third regular 2/3 NPH. I don't remember specifically, but this is like in kindergarten. And she took the cap off the syringe and I go, I'm not taking that. And she thought I was just being fussy and dumb kid. I said, no, that's clear. It's all clear.

[A]

Yeah. Supposed to be cloudy and clear.

[B]

Yeah.

[A]

Where's the other one?

[B]

Yeah, it should look milky.

[A]

Justin's going down for the count. You hit me with that whole thing, right?

[B]

We called my mom at work. She raced home. Her heart's probably pounding. Well, I shouldn't say that. Her heart would have been pounding more had it been delivered.

[A]

Yeah, right.

[B]

But she felt like mud because, I mean, she probably just had gotten to work that we called to say the insulin isn't mixed up.

[A]

Right.

[B]

So at least we dodged a bullet there. And.

[A]

And you saw it. That's awesome that you saw it too.

[B]

You know, it was dumb lucky. Just like dumb luck going to, you know, get the invite for my friends to go up for the Tour de Cure event. Dumb luck sitting next to that guy who's got. Between him and his party, he's got one omnipod looper and one mini med looper.

[A]

Yeah. Do you ever hear that episode where the school nurse gave that little girl, like, way too much insulin, but the school nurse insisted on putting a band aid over top of the injection site and the mom.

[B]

What the hell's that gonna do?

[A]

This is where the dumb luck comes in. Have you not heard this episode? It's fantastic.

[B]

I feel like I've heard you mention it to somebody else, but not the episode itself. No.

[A]

She hit that kid with like, I think like 100 units of insulin or something like that. So much that it didn't fit in the syringe because of that. She gave her two syringes because of that. She put two band aids on her. The mom happened to be bringing something. So the reason the kid was getting injection is I think they left the PDM in the car and the mom was bringing the PDM in the interim time they went to mdi, the nurse does it completely wrong. The mom says, why do you have two band aids? And that started the conversation that led them to understand what had just happened.

[B]

That's.

[A]

Yeah, yeah. That's crazy, right?

[B]

That's wild.

[A]

That kid totally goes back to class and drops dead in that school if they don't do it, you know.

[B]

Oh, for certain. Or God forbid, if they went out

[A]

to recess before kids can have a seizure, maybe somebody gets to. Or maybe somebody doesn't. Like, it would have been really bad. And just the two band aids, like, made her go, how come you're wearing two band aids? And that was it. They just figured it out like that.

[B]

Thank God for that.

[A]

Yeah. Yeah. I'll take some good luck once in a while, is what I'm saying. So, okay, just. Justin, where are you at now, man? Like, how long have you been looping? What, for six years now?

[B]

I think so.

[A]

Yep. Yeah. Okay. By the way, for people who wonder how my brain works, every time you say 2019, you mean 2018, I hear the start of a dochi song in my head. And when you said fussy, I thought, bob Fosse. Those are references. No one's gonna know. But I just wanted to let you know what pops into my mind when people are talking.

[B]

The only thing about Fosse I know is that they mentioned him in the birdcage.

[A]

I swear to you, I think that's probably where I know it from. And at the same time, like, you have to be impressed with how my brain is able to fight off that whole, like, Bob Fosse, Bob Fosse thing and go back to, like, staying with you. You don't know how hard it is for me to accomplish this podcast, but it's not as easy as it should be.

[B]

Like, it's hard for you to accomplish because you're playing with the chameleons all day long.

[A]

I'm actually right now watching something run around this cage that I'm just so tickled by. I can't believe how crazy it is that it's in here with me. It's just. I'm talking to you and just watching this thing live its life. My question is, first of all, I'm thrilled for you. You find Loop. You find. So you found Loop. And then to understand Loop better, you found the podcast.

[B]

Correct.

[A]

Okay. And then I'm saying things that you're just like, no one's ever mentioned this stuff before. So does loop get you from 8, 10, A1C down, or is it a combination of loop in the podcast? And now that you're down, like, how do you found your life versus prior

[B]

to that, the A1C started to come down with my wife's support, with taking it more seriously. Like I said, she's a physical therapist. She has a biology degree, so things like A and P and biological systems, she's privy to. So she naturally wants to see me do better so that I'm here longer. Not to mention when we were dating and newly married, because my blood sugar would go so high from either late Boluses, miss Boluses, bad carb counts, we would fight a lot.

[A]

Yeah, you're probably a prick, right?

[B]

Still am.

[A]

Yeah. But now at least it's natural.

[B]

Exactly. So she wanted to see that come down. And I think the context for her was that Ada wants to see you with an A1C. Is it below eight or below seven?

[A]

I mean, now I think it's seven and a half for kids, seven for adults. I forget where they're at right now, but back then, I don't know. It could have been higher at that point. I think they were at 8 not that long ago.

[B]

So back in Those days, the 8 was probably the benchmark we were aiming for, but she wanted to see us do better and see me do better. So from what I remember, around the time where we got together, I was probably in the low eight high sevens. And I remember it was either. My memory's a little fuzzy about whether I actually started using the N light CGMs months before loop, or if I really just got on end light at the same time as loop. But I remember starting out at a 7.9, and within I think a year I was down to 6.9. Then Covid hits. So I've got some. I have a longer gap when my A1C was taken because they did telemed stuff during that point.

[A]

Right, Yeah, I remember.

[B]

And I've had. Let's see, I've got recordings going back to 20, 21, 61 6, 4, 5, 7. My last two were 5, 8 and 515 1. Scared me a little bit because I said, I'm not pregnant. I don't really want to be that low.

[A]

Were you getting low a lot for the 5:1 or are you just.

[B]

I was.

[A]

Things are dialed in. You are.

[B]

I was. Yeah. It was probably in every other day.

[A]

Yeah. Well, we don't want that.

[B]

No, we don't. But if I was gonna float around with a 5 4, I would take that happily.

[A]

Yeah, no kidding. The stability is there too, right? You're not bouncing around anymore. And is that just like beyond not fighting with your. With people in your life because your blood sugars are vacillating all over the place, are high? I mean, do you feel other value, I mean, other than knowing you're going to live longer and like, stuff like that. But like, is there other value day to day that you could point to people who are of a higher A1C and say, look, if you were able to bring this down and get it stable, you might enjoy these things as well.

[B]

I think from a biological perspective. I remember asking my NP if my circulation had gotten better with a lower A1C because my feet felt warmer over the winter. I always struggled with cold hands and cold feet. Not to the point where they were blue or numb, but they would always be cold, always from October through April. And she said probably not with the circulation, but the nerve endings and your neuropathy might be getting better. I was never diagnosed with neuropathy. I never had numbness or tingling long term. But she said that your neural pathways to the feet might have improved, which is why they feel warmer to you in the winter months. Yeah, that possibly could happen.

[A]

It's awesome. Do you have any complications right now? This episode was too good to cut anything out of, but too long to make just one episode. So this is part one. Make sure you go find part two right now. It's going to be the next episode in your feed. I'd like to thank the blood glucose meter that my daughter carries. The contour next gen blood glucose meter. Learn more and get started today@contour next.com juicebox and don't forget, you may be paying more through your insurance right now for the meter you have. Then you would pay for the contour next gen in cash. There are links in the show notes of the audio app you're listening in right now and [e-mail] to contour and all of the sponsors. I'd like to remind you again about the MiniMed 780G automated insulin delivery system which of course anticipates, adjusts and corrects every five minutes 24 7. It works around the the clock so you can focus on what matters the Juicebox community knows the importance of using technology to simplify managing diabetes. To learn more about how you can spend less time and effort managing your diabetes, Visit my link MedtronicDiabetes.com Juicebox hey, thanks for listening all the way to the end. I really appreciate your loyalty and listenership. Thank you so much for listening. I'll be back very soon with another episode of the Juice Box Podcast. The Juice Box Podcast has been in production since January of 2015, and in that time we have amassed just a fantastic catalog of information for you. The Defining Diabetes Series Also Bold Beginnings Diabetes Pro Tips Small Sips Fat and Protein Algorithm Pumping Mental Wellness Ask Scott and Jenny Diabetes Variables Defining Thyroid After Dark The Math Behind Omnipod 5 Pregnancy How We Eat Grand Rounds Cold Win GLP Meds the Quick Start Guide if you want to get going with the podcast but you don't know where to go Diabetes Myths there's even a type 2 diabetes pro tip series. All of this [e-mail], go to the menu, click on Series and and they can all be found right there. If you go to juiceboxpodcast.com lists you'll get all these great downloadable lists of all the different series so you can save them on your phone, keep them for later. Every episode is listed along with its episode number. So you can go into Apple Podcasts or your, you know, wherever you listen to your audio and say you want to hear episode 1469 steal a 1C overnight from the Small Sip series. You just go to the search bar, type juice box one word and then the episode number 1469. It should be the first return you get. Hey, do you need support? I have some stuff for you. It's all free. Juicebox podcast.com click on support in the menu. Let's see what you get there. A1C and blood glucose Calculator. People love that. That's actually I think the most popular page on the website some months a list of great endocrinologists from listeners that's from all over the country. There's a link to the private Facebook group to the Circle community and we have a fantastic thing there. American Sign Language. There's a great sign language interpreter who did the entire Bold Beginning series in asl. So if you know anybody who would benefit from that, please send them that way. Just go to juiceboxpodcast.com and click on Support. While you're there, check out the guides like the Pre Bolusing Guide, Fat and Protein, Insulin, Calculator oh, gosh. Thyroid. Glp. Caregiver. Burnout. You should go to the website, click around a little bit on those menus. It really. There's a lot more there than you think. If you have a podcast and you need a fantastic editor, you want Rob from Wrong Way Recording. Listen, truth be told, I'm, like, 20% smarter. When Rob edits me, he takes out all the, like, gaps of time. And when I go and stuff like that, and it just. I don't know, man. Like, I listen back and I'm like, why do I sound smarter? And then I remember because I did one smart thing. I hired Rob at wrongwayrecording. Com.