#1794 Had Enough - Part 1

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Justin, diagnosed at age 3 in 1987 , explores how DIY looping lowered his A1C from 10.0 to 5.1 , CGM necessity , and how stability improves relationships.

Key Takeaways

• The Criticality of CGMs: Justin emphasizes that while pumps are helpful, the Continuous Glucose Monitor (CGM) is the most valuable tool for safety and long-term health, as it provides the data necessary to stop highs and lows in real-time.
• Advocating for Pre-Bolusing: Justin expresses frustration that modern medical guidance often neglects the importance of pre-bolusing. Using rapid-acting insulin requires a lead time to match the peak of the insulin with the rise of the food.
• The Power of Community & Word of Mouth: Justin's life changed after a chance meeting with a "looper" at a diabetes event. This peer-to-peer connection provided information about Automated Insulin Delivery (AID) that he hadn't received from clinical settings.
• Overcoming "Old School" Habits: After decades of minimal testing (2-3 times a day) and higher A1cs, transitioning to an AID system helped Justin bring his A1c from the high 7s to the low 5s, significantly improving his quality of life and physical symptoms like cold extremities.
• The Impact of Blood Sugar on Relationships: Justin and Scott discuss how high blood sugars can lead to irritability and conflict in marriages ("being a prick"), and how stabilizing those numbers can lead to a more harmonious home life.

Resources Mentioned

• Juice Cruise 2026: juiceboxpodcast.com/juicecruise
• Medtronic Diabetes (MiniMed 780G): medtronicdiabetes.com/juicebox
• Contour Next Gen Meter: contournext.com/juicebox
• Tidepool Loop: tidepool.org/loop
• LoopDocs (Katie DiSimone): loopkit.github.io/loopdocs/
• Wrong Way Recording (Rob): wrongwayrecording.com

FULL EPISODE TRANSCRIPT

Scott Benner (0:00)

Welcome back, friends. You are listening to the Juice Box podcast.

Justin (0:14)

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.

Scott Benner (0:27)

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Scott Benner (1:54)

If you're looking for community around type one diabetes, check out the juice box podcast private Facebook group. Juice box podcast, type one diabetes. But everybody is welcome. Type one, type two, gestational, loved ones, it doesn't matter to me. If you're impacted by diabetes and you're looking for support, comfort, or community, check out Juice Box Podcast, type one diabetes on Facebook. Nothing you hear on the Juicebox podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan. Today's podcast episode is sponsored by Medtronic Diabetes, who is making life with diabetes easier with the MiniMed seven eighty g system and their new sensor options, which include the Instinct sensor made by Abbott. Would you like to unleash the full potential of the MiniMed seven eighty g system? You can do that at my link, medtronicdiabetes.com/juicebox. Today's episode is also sponsored by the Kontoor Next Gen Blood Glucose Meter. This is the meter that my daughter has on her person right now. It is incredibly accurate and waiting for you at kontoornext.com/juicebox.

The "Pissed Off" Diabetic

Justin (3:13)

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.

Scott Benner (3:24)

You're mad. How old are you now?

Justin (3:26)

I'm 41.

Scott Benner (3:27)

You're just mad because you're 41, or what are you mad about?

Justin (3:30)

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 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.

Scott Benner (3:49)

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

Justin (3:54)

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. Yeah.

Scott Benner (4:06)

You know, 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.

Justin (4:19)

She should.

Scott Benner (4:20)

I well, yeah. Right? Come on, Kel.

Scott Benner (4:23)

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

Justin (4:28)

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

Scott Benner (4:32)

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

Justin (4:38)

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.

Scott Benner (4:58)

I went to high school with a guy named Kelly.

Justin (5:00)

Is that right?

Scott Benner (5:01)

Yeah. What's up, Kelly? You're listening. Yeah. No. 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. Really? Yeah. Anyway, sorry. Your dad's Kelly.

Justin (5:13)

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.

Scott Benner (5:46)

Yeah.

Justin (5:47)

Okay. 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.

Growing Up in the NPH Era

Scott Benner (5:57)

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?

Justin (6:09)

Both my parents and I were quite involved. Naturally, being so young, they drove the bus heavily probably from diagnosis at three 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. They you know, 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.

Scott Benner (7:16)

Were you doing two shots a day until the pump?

Justin (7:20)

I think when I was younger, three, four, five, I did two shots a day mixing regular and NPH. Then as I got older, maybe eight, nine, 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.

Scott Benner (7:45)

So they were 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?

Justin (7:54)

Right into the pump. Yeah. It went from regular NPH. I think then it went to Humalog and NPH. Humalog came out a year or two before the pump.

Scott Benner (8:07)

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 it to you?

Justin (8:20)

For daily treatment decisions? Yes.

Scott Benner (8:22)

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

Justin (8:28)

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

Scott Benner (8:43)

Still. 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?

Justin (8:52)

Good amount. Yes. Okay. So you weren't angry then? No. 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?

Justin (9:11)

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.

Scott Benner (9:22)

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

Justin (9:28)

Feeling of loss? 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.

Scott Benner (9:40)

Alright. You're pissed that that you got into the game so early that they didn't have stuff like they have now.

Justin (9:48)

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

Scott Benner (9:52)

No. No. Don't worry. We're getting to it. 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.

Why It Took a "Dope from Jersey"

Justin (10:04)

Well, it's your fault.

Scott Benner (10:05)

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

Justin (10:08)

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

Justin (10:17)

Because why is it that people have been treated with insulin for a hundred years? I've had diabetes for almost forty. Why the hell is it that it takes you, some dope from Jersey, who barely graduated high school to give me the best therapeutic decisions and strategies and counseling such a a goofy word to because you're no counselor.

Scott Benner (10:47)

I offer my counsel. Let's say it like that maybe.

Justin (10:50)

Oh, fine.

Scott Benner (10:52)

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.

Justin (11:00)

Well, I have what? My dad's got six cousins from Jersey. So I get you.

Scott Benner (11:06)

You're accustomed to these conversations.

Justin (11:08)

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

Scott Benner (11:18)

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.

Justin (11:22)

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

Scott Benner (11:26)

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

Justin (11:31)

Whatever helps you sleep at night.

Scott Benner (11:32)

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?

Justin (11:43)

Let's see. I, on a whim, was looking for help with Loop because I went on Loop well, so let's back up a couple minutes.

Scott Benner (11:55)

Please.

Justin (11:56)

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 he you know, she talks to him for a while, turns out his wife is a nurse in the hospital. 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 Mhmm or 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 de cure event up at the center of town, up at the fairgrounds. You wanna 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 five k run, and I think he went on the 10 k ride.

Scott Benner (13:19)

Okay. Wait. You and your wife I I just want the 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.

Justin (13:38)

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

Scott Benner (13:43)

But, otherwise, that's a true story. That since see, you can meet people. That's really nice. I actually find that to be a a lovely story. Think it's because I'm older. But I'm so sorry. You're the tour de cure. What happened then?

Scott Benner (13:56)

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Scott Benner (15:07)

Unlike other systems that will wait until your blood sugar is a 180 before delivering corrections, The MiniMed seven eighty g 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 seven eighty g system, which gives you real choices because the MiniMed seven eighty g system works with the Instinct sensor made by Avid, as well as the Simplera Sync and Guardian Force sensors, giving you options. The Instinct sensor is the longest wear sensor yet, lasting fifteen days and designed exclusively for the MiniMed seven eighty g. 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, or switching from other pump and CGM systems. Learn more and get started today with my link, medtronicdiabetes.com/juicebox.

Meeting the Looper

Justin (16:17)

After all the events wrap up, they have a lunch, and I hadn't signed up for the event at all. So I figured I was gonna 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 fellow 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? You know, why don't you just enjoy the music that's being played?

Scott Benner (17:10)

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

Justin (17:15)

Exactly.

Scott Benner (17:18)

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

Scott Benner (17:42)

Magic sorcery.

Justin (17:44)

It was magic. You know, he shows us, you know, he's gotta take, you know, half a unit for this, I don't know, Apple that I'm gonna have with my lunch. Types it in on the phone. We heard the the Medtronic beep, you know, the pump beep. I'm like, what the hell is that?

Scott Benner (18:01)

Yeah. That fries your mind. 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 live. That really must have really seemed awesome to you.

Justin (18:13)

It was nuts. And I thought, where the hell has this been? He he gets into the whole, you know, AID pitch. And 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? What?

Scott Benner (18:39)

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

Justin (18:43)

Right. 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 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 a 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. Yeah. I think she said at the time she had a couple patients on t slim which was maybe just getting into the Basal IQ thing. And she said, I cannot—

Scott Benner (19:31)

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.

Justin (19:44)

Sort of. 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 is 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.

Justin (20:09)

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 gonna take Tidepool Loop. So I said, well, I'm not gonna fart around with trying to do an Android thing. If Tidepool's gonna get Loop into the App Store and I'm not gonna 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.

Scott Benner (21:10)

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

Justin (21:13)

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

Scott Benner (21:21)

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

Justin (21:30)

I do too. I think that's adding more CGMs, adding more pump manufacturers, I I think is a good thing. Yep. 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.

Scott Benner (21:55)

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. 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, was being at 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.

Scott Benner (22:31)

I felt like that in the early two thousands when I was trying to tell people about TiVo. I'm like, you don't understand. It was like, records it on a hard drive. You can pause it and fast forward. There's a button that jumps to the commercials, and people looked at you like, what do 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 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 gonna tell you about it. Right?

Justin (22:58)

Well, now they are because Tandem invites you to friends for life or, you know, other events. Omnipod is—

Scott Benner (23:06)

I'm doing a nice thing with Omnipod next week. You guys will see it a little bit. So I'm saying, like, Pepsi doesn't tell you that Coke is good. You know what mean? Like, so they're not gonna 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 gonna 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 and the FDA and all that stuff. Right?

Justin (23:32)

It's gotta 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 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.

Scott Benner (24:05)

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

Justin (24:08)

I think so. And the commercial adoption with the Medtronic six seventy system that I think was announced very shortly after that, after I'd started on loop, maybe that's boosted everyone's confidence, wisdom, experience.

Scott Benner (24:24)

About an algorithm in general?

Justin (24:26)

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

The Pre-Bolus Frustration

Scott Benner (24:38)

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 or don't know to tell you that, you know, fat and protein might impact your blood sugars later. It's a pretty big leap to think those same people are gonna tell you, like, hey. There's a bunch of people on the Internet writing code that, gives you insulin.

Justin (24:57)

That's what pisses me off.

Scott Benner (24:59)

I know. Go ahead.

Justin (25:01)

It's you, the dope from Jersey, who stands up on your soapbox and says, pre bolus your meals. I thought back, I don't know, maybe a couple months ago, you were talking with somebody about pre bolus thing, and maybe they said that you had to prebolise 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 onsets in fifteen minutes, peaks at an hour.

Scott Benner (25:29)

Jenny has 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 bolus, and 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 both 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.

Scott Benner (26:05)

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, fifteen 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 bolus.

Justin (26:50)

I suspect she's right. Yeah. Certainly, Jenny's had her ear.

Scott Benner (26:55)

She lived through it too. Yeah. Yeah. She lived through that time.

Justin (26:58)

Yeah. And, you know, both as a patient as she was a teenager, young adult, and then certainly now as a CDE. It's just one of the oddities of 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 we they somebody puts out a thousand songs every summer when we're growing. 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 it might not even be trackable by a human being, but I think that's how we get to this situation.

Scott Benner (27:29)

And then, like you said, then somebody's gotta 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 a freestyle meter, you know, and not even pens. Do you know no one ever gave me a pen? What so needles and a freestyle meter.

Justin (27:59)

I've never had one either. I lie. I've been given the trial Lantus pens in the event that the pump crept out on me.

Scott Benner (28:09)

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, which shoots 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 are 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 care it. 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 a one c didn't move much. And I was like, I thought this thing was supposed to be magic.

The CGM Revelation

Scott Benner (28:47)

I mean, it's not until a CGM. Right? It's not till we get that first Dexcom 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. 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 and that I didn't understand. And then I thought I really understood it. Until Arden got on loop, and then I through NightScout, 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? Are you or are you more mad about the lost time?

Justin (29:26)

I'm disappointed at the lost time. Naturally.

Scott Benner (29:28)

Yeah. No. I would be too.

Justin (29:30)

CGMs really came into their own and had a they became really fruitful and available. What year was that? Like, '20, what, 2010?

Scott Benner (29:44)

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.

Justin (29:52)

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

Scott Benner (30:04)

How did that impact your life and your health?

Justin (30:07)

Oh, I my wife has told me that one of her old coworkers used to write progress notes for someone who would come in with a a double knee repair or something like that and go, patient has enjoyed sixty years of poor health with, you know, high blood pressure and blah blah blah. I would have to say that I enjoyed a one c's 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.

Scott Benner (30:43)

Right? Did you ignore it in college?

Justin (30:45)

Ignore what?

Scott Benner (30:46)

Diabetes. Would did you back burner it and just do the minimum, or were you working on it?

Justin (30:50)

Oh, minimum. For sure. My endo, I had the view every three months that I was just gonna get the finger wag that test more, bring these numbers down. Let's see that a one c drop to below seven 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.

Scott Benner (31:13)

Yeah. Well, your a one c was 10. Your blood sugar is probably over 200. Right? Yeah. For good portions of the time. Certainly.

Justin (31:24)

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. Work as anybody to say that.

Scott Benner (31:47)

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. Like, if you came to my house with a gun and said, hey. You gotta give me the pump or the CGM. Like, I'd throw the pump at you. 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 gonna increase 20 fold if you wanna keep your health where it is without the CGM. You're be testing all the time and trying to fill in those gaps in that understanding with guesses and supposition. So—

Justin (32:24)

Or you're gonna be like me, test maybe three times a day for decades. Just ignore the whole damn thing. And just make guesses. Yeah. Sure. I 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 it was. So having that data, even when it was just the n 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 in line sensor. But for some reason, it worked fairly well for me, and I could see the graph on the MiniMed 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 too.

Scott Benner (33:22)

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, my CGM only made it eight days. This thing sucks. Are you, like, shut up? Or how does that strike you when people who are newer to diabetes don't have context for what you live through?

Justin (33:42)

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 5,300 after a meal or something like that, at least you know it. And you know the pump is wrong or you bolus too late or you didn't bolus.

Scott Benner (34:29)

Yeah. You do something about your blood sugar doesn't stay two fifty for a week. Right? Right. Yeah. Right. So when they are upset about the sensors, I get it. I do get it because we're also paying dearly for them.

Scott Benner (34:44)

No. Yeah. No. I under I do too. Listen. You're counting on it. You've paid for it. Someone's promised you that it does the thing. I understand all that. I do. I it's the part where I wish for them and 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 gonna call the company and they're gonna 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 gonna be perfect anytime soon. I find that it's an opportunity to be upset at a thing that you should be 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.

Algorithms as the Gold Standard

Scott Benner (35:41)

Also, now, they're chocolate and peanut butter at this point. Right? Like, a pump in a CGM, a pump with an algorithm in 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. Exactly. Links at juiceboxpodcast.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 gonna see a lot of people live a lot longer with far fewer issues as they get older.

Justin (36:30)

I certainly agree about the CGM given the value that it adds. Pumps are amazing. I think there's a 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 as opposed to three per day. That was the easy sell back then. Right? That was the easy sell. Yeah. The at least the most compelling to me. Mhmm. Certainly, there's also the advantage of basal rates and only using short acting, no more NPH because we had a near, I I guess, near fatal thing where there was one time I grew up we had a two family house.

Justin (37:27)

My grandma would put me on the bus and take me off the bus as both 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 in NPH, so it it's clear before cloudy. I always used to think, oh, that's kind of a lame, like, 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, two thirds NPH. I I don't remember specifically, but this is, 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. Yeah. Supposed to be cloudy and clear. Where's the other one? Yeah. It should look milky.

Scott Benner (38:26)

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

Justin (38:30)

We called my mom at work. She raced home. Her heart's probably pounding. Well, I I shouldn't say that. Her heart would have been pounding more had it been delivered. 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 right. So at least we dodged a bullet there.

Scott Benner (38:51)

And And you saw it. That's awesome that you saw it too. You know?

Justin (38:54)

It was dumb luck. 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 MiniMed looper.

Scott Benner (39:09)

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—what the hell is that gonna do? This is where the dumb luck comes in. Hey. Have you not heard this episode? It's fantastic. I feel like I've heard you mention it to somebody else, but not the episode itself. No.

Scott Benner (39:29)

She hit that kid with, like, I think, like, a 100 units of insulin or something like that. Oh. 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. That's wild. That kid totally goes back to class and drops dead in that school if they don't do it. You know? Oh, for certain. Or or god forbid if they went out to recess before. Kid's gonna have a seizure. Maybe somebody gets to her. 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.

Scott Benner (40:22)

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

Justin (40:33)

I think so. 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 Doce 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.

Justin (40:51)

The only, thing about Fosse I know is that they mentioned him in the bird cage.

Scott Benner (40:55)

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.

Justin (41:11)

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

Scott Benner (41:14)

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. Know, you find Loop. You find so you found Loop, and then to understand Loop better, you found the podcast. Correct. 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 eight ten a one c down, or is it a combination of Loop and the podcast? And now that you're down, like, how do you found your life versus prior to that?

Life with Stable Blood Sugars

Justin (41:53)

The a one c started to come down with my wife's support with taking it more seriously. Like I said, she's a 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, missed boluses, bad carb counts, we would fight a lot. Yeah. You're probably a prick. Right? Still am. Yeah. But now at least it's natural. 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 a one c. Is it below eight or below seven? 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 eight not that long ago.

Justin (43:04)

So back in those days, the eight 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 eights, high sevens. And I remember it was either my memory's a little fuzzy about whether I actually started using the nLIGHT CGMs months before loop or if I really just got on nLIGHT at the same time as loop. But I remember starting at a 7.9, and within, I think, a year, I was down to 6.9, then COVID hits. So I've got some you know, I have a a longer gap when my a one c was taken because they did telemed stuff during that point. And I've had let's see. I've got recordings going back to 2021, 06/1957. My last two were 58 and 51. 51 scared me a little bit because I said, I'm not pregnant. I don't really wanna be that low.

Scott Benner (44:19)

Were you getting low a lot for the 51, or you just things are dialed in. You are?

Justin (44:24)

I was. Yeah. It was probably in every other day. Yeah. Well, we don't want that. No. We don't. But if I was gonna float around with a 54, I would take that happily.

Scott Benner (44:35)

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 fascinating all over the place or high. I mean, do you feel other value? I mean, other than knowing you're gonna 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 a one c and say, look. If you were able to bring this down and get it stable, you might enjoy these things as well?

Justin (45:03)

I think from a biological perspective, I remember asking my NP if my circulation had gotten better with a lower a one c 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.

Scott Benner (45:58)

So 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 gonna be the next episode in your feed. I'd like to thank the blood glucose meter that my daughter carries, the Kontoor Next Gen blood glucose meter. Learn more and get started today at kontoornext.com/juicebox. And don't forget, you may be paying more through your insurance right now for the meter you have than you would pay for the Kontoor Next Gen in cash. There are links in the show notes of the audio app you're listening in right now and links at juiceboxpodcast.com to Kontoor and all of the sponsors.

Scott Benner (46:53)

I'd like to remind you again about the MiniMed seven eighty g automated insulin delivery system, which of course anticipates, adjusts, and corrects every five minutes twenty four seven. It works around the clock so you can focus on what matters. The Juice Box 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 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 five pregnancy, how we eat grand rounds, cold win, GLP meds, the quick start guide if you wanna get going with the podcast but you don't know where to go, diabetes myths, there's even a type two diabetes pro tip series. All of this is at juiceboxpodcast.com. Go to the menu. Click on series, 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 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 wanna hear episode fourteen sixty nine, steal a one c overnight from the small sip series. Just go to the search bar, type juice box, one word, and then the episode number fourteen sixty nine. It should be the first return you get. Hey. Do you need support? I have some stuff for you. It's all free. Juiceboxpodcast.com. Click on support in the menu. Let's see what you get there. A one c 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 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.

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