#1973 Founder Story: Jon Fawcett and Sugarpixel
Founder Story: Jon Fawcett and Sugarpixel
Jon Fawcett built Sugarpixel so his daughter would wake up to her alarms. He and Scott talk about making a physical product one at a time, and why neither of them wants to grow much bigger.
Jump to a moment
- He had the skills before he had the reason. Jon spent years in product development — soap dispensers, airplane parts, vacuum cleaners — and ran an iPhone accessories company he launched on Kickstarter with a homemade flipbook video rather than the expensive production everyone else was paying for. All of that hardware experience was already in place when his daughter was diagnosed.
- Sugarpixel exists for one reason, and that governs everything. He wrote Loop Follow first, solving his own family's problems, and the original concept was randomized alerts — because a repeating alarm at the same pitch every hour stopped waking his daughter. His rule now: if a feature idea would dilute the core purpose of making sure she wakes up, they skip it.
- He printed the first thousand housings himself. Twenty to forty in a twenty-four hour period, just for the housings. Only once demand was proven did they buy injection molds. His caution is about growth — don't outpace what you can support, don't sell in too many places at once, and be wary of expanding into new things when the thing you have is working.
- Sometimes you solve a problem nobody had. He describes building a fix for Libre 2 users around phantom alerts, only to find it wasn't what people actually needed. Scott offers his own version — web pages he was sure would land that nobody wanted, and the Spanish translations he's glad he never did. Both land on the same conclusion: you can't fully trust what people say they want.
- Neither of them wants to be much bigger. Jon's team is four people; Scott notes listeners assume the podcast is backed by a staff. They talk candidly about how much time the business of the thing steals from making the thing, the boredom that comes with a product that's finished, and why conferences like Friends for Life matter more for the in-person stories than for sales.
- Sugarpixel — Jon's glucose display with randomized alerts and an optional bed shaker.
- Diabetes Pro Tip series — Episodes 1000-1025 — settings, insulin timing, and food impact.
- Clinician share page — The page Scott mentions for doctors who send patients to the show.
- Juicebox jukebox — The songs discussed at the end of this episode.
Every word of the conversation
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John, you're being recorded now. Jump right in and tell people, about how you've missed me. That's, think, where we should start.
I have missed you. So we spent the whole summer together, basically, traveling around to one conference and another. And I... It feels like these last, what has it been? Five weeks, six weeks?
Mhmm. Like, I haven't seen your face in six weeks. Just feels really, really weird, but I'm looking forward to seeing you again in, well, just couple weeks from now.
Oh, at Touched by Taipan?
Yeah. Yeah. So back in Orlando.
I tell people this, and I know they think that I'm being pompous. But when we're together for a little while and then we part, I say, listen. You're gonna miss me. It's okay. Happens to everybody.
You'll get over it eventually. But
Oh, I know you miss me too. You you you keep texting me all the time. That's how I know you miss me also.
Yeah. Now every time I get a picture of my feet, I send it to you.
Thanks for making me
For for people listening, John and I have incredibly similar, personalities. Is that accurate, you think?
That is that is very accurate.
Yes. Yeah. Okay. So I'm I'm having you on today because I'm super interested to learn about the beginnings of Sugarpixel. Like, really, like, where does the idea come from and how do you get it from an idea in your head to an actual product that people are holding and then turn it into something that is sustainable enough that it can go through iterations and changes and improvements?
Before Sugarpixel: soap dispensers and airplane parts4:07
But I guess take me back to take me back to before you're making the SugarPixel. Like, what do you do for a living at that point?
Yeah. So before SugarPixel, well, let's rewind even further than immediately before. I ran a company that was designing and engineering products for other companies. So it was a design consulting company. So we made everything from soap dispensers to airplane parts and vacuum cleaners and just about everything in between.
At one point, we designed the boats for it's a small world ride in Disney World. So I mean anything and everything. During that time, I always had these ideas for products. And I could design them. I could create them.
But in our business, as soon as a product was, like, ready to to go out into the world, we'd hand it back off to the company that hired us, and they handled all the marketing and stuff like that. So this was this was back before... Let's just say, at times, it was before home Internet or even Internet in your workplace. And even further on in that, it was still dial up. So there wasn't this ecommerce where anybody could spin up a website to just, you know, launch their new product ideas to the world.
So in 2012, I had another one of these ideas for an iPhone cable, and this was right when Kickstarter was happening. Mhmm. So I'm sure most people are familiar with Kickstarter these days. Basically, throw your idea up there, people, quote, unquote, back you when you're making a product that's essentially amounts to a preorder. And I threw this iPhone cable up on Kickstarter.
A Kickstarter, and a flipbook video6:04
We had no idea if two people were gonna love it or 2,000. We just really didn't know. We had a 10,000 goal, and that was basically enough for me to build injection molds to actually make, like, two units for myself. So so, like, I looked at it as how much money do we need to just turn this concept and these prototypes into an actual real production product?
Okay.
So fast forward thirty days, of what that Kickstarter time period was, and we... I always like to say I accidentally launched that company, because just had an idea I wanted to make a cool iPhone cable. Thirty days later, we had about a $250,000 in funding from Kickstarter to launch the company.
How do you figure that happened? Was it a moment where people's cables were crappy and you came up with a, like, a better version? Or, like, why does that catch on that idea?
Yeah. It was it was twofold. So one is, it was a better charge cable. We came up with a way to wrap our cables in, double coiled metal that's still flexible but extra extra strong, so you're not gonna have the cables fraying and stuff like that. So so first, it was a need that everybody has had a cable where it's like the ends frayed off and it doesn't work anymore.
Mhmm. And then the second was just viral marketing on it, and it's the first time I had ever been in something... Involved in something that you could say went viral in that regards. So even back then, early days of Kickstarter, people were were spending ridiculous amounts of money on their video to go on a Kickstarter page and on paying for ads on Facebook and all that type of stuff. But this was also before your iPhone was capable of recording decent videos.
So people were paying tens of thousands of dollars to an actual video company to come in and shoot on real... Like, the same type of cameras you'd use to shoot movies because that's the only thing that could get a quality that sorta was comparable to what your iPhone can do today.
Okay.
I knew I didn't wanna just drop 10 or $20 on a a marketing video. So I had a little bit of a crazy idea, and I hand drew stick figure animations a couple thousand frames to tell the story. And my brain just sorta said, if we can't make something that ourselves without spending that exorbitant amount of money Mhmm. That is, you know, like a TV commercial level, we have to go the exact opposite. And we need to make it as intentionally low tech as possible.
And I couldn't think of anything more low tech than sorta like the the flipbook you do in the... You know, you draw the little stick figures in the corner of a a book and then you flip through the pages. That's essentially what this looked like, telling the story.
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I think it was so Rudimentary? Well... Yeah. But it was so out of the blue and not what people were used to seeing that it caught people's attention.
Okay.
You know? So even in today's world of, you know, doom scrolling and you're trying to get somebody to stop for a millisecond over something on Facebook or Instagram, the stuff that doesn't look like everything else is the stuff that's most likely gonna get someone's attention. So that was sort of where that whole thing came from, and I think it was those two factors launched that company. So I came from having built and designed products for all kinds of other companies in all kinds of industries to then launching my own tech company, and Lily was diagnosed while I was still running that company. So she's diagnosed.
I immediately jump in and start working on loop. After loop, I wrote loop follow because I was trying to solve the needs that we had as a family. And then at one point, she was... So she was 12 when she was diagnosed. When she was 16, I really was thinking, oh my gosh.
Loop Follow, and the alert that wouldn't wake her13:01
She's two years away from possibly moving off on her own at college, and my wife and I are still waking her up for every single alert overnight. She's completely sleeping through them. And so like, like the other stuff I did, the software stuff with loop or loop follow, this was just one more thing to solve. The only difference was it combined software and hardware Mhmm. To really figure it out.
Well, I had all of the hardware expertise already from having run this iPhone accessories... Android accessories company for, I think, the time, almost ten years. So the first the first step in sort of Sugarpixel aside from the, you know, the... After you have this idea is I just started ordering a bunch of electronics, like electronics kits, Arduinos and things like that, Arduino speakers, jumper cables, to try and write simple code that could do what was in my head. And, really, that very first concept was the randomized alerts that Sugarpixel has.
And it's it's the concept of when your brain hears the same sound repeatedly, it eventually starts to ignore it. Someone that lives next to the train tracks never hears the train. I grew up... I had a cuckoo clock in my house. I never heard the cuckoo clock, but all my friends in the middle of the night that would would stay over, they were...
It was driving them crazy because they woke them up every single hour when it went off. Yeah. So with these electronics kits that were just off the shelf kits where I'd wire up jumper cables to all the different components and then write firmware code to install onto this hardware kit, I came up with the randomized alerts. I had it hooked up to her Dexcom. I three d printed a little box to put it in and and shoved in what felt like two miles of very sketchy wiring inside a tiny little box that I could hold in my hand, and crossed my fingers that that little box didn't burn my house down because of how much wiring was stuffed inside.
And it worked. And that's, you know, that's sort of the moment in any business, and you probably had this with the podcast. In any business, you're like, oh my gosh. This works. You know?
I It did the thing I thought it was gonna do.
It did what I... What was in my brain. Yeah. And when it does that, then you have this whole host of other decisions to make. You know?
And it's it's not just... It's no longer a tinker and just, you know, if I can make it, I can make it. Now it's a, oh, how how am I gonna make 10 of these, 20 of these, 10,000 of these, 20,000 of these, you know, because I can't handwire everything in my in my, garage.
And you also don't wanna be mailing things to people that you think, oh, I hope this doesn't explode.
Yeah. Exactly. Exactly. So that's where our our connections from the tech... The prior tech company came in really handy.
So I had ten years of connections with factories all over the world that were already building electronics products for us. And then even further back than that, the consulting company, we had connections through those projects of industrial designers and, you know, artists and... Or graphic designers and molding companies and... You know, so all the other pieces parts that you might need Mhmm. Sort of came together just from these companies that I had been running before Sugarpixel came about.
But even with that, I still had this thought in my head. Hey. I made it. It works. What if only five people need it?
What if nobody else is in the situation I'm in? And so it... You know, I... Sort of like the iPhone, I didn't want to spend $1,020.30, however many thousands of dollars to launch a new product, not knowing if anyone was going to
Yeah.
Not knowing if it was gonna solve their need the way it solved my need.
Good news. We have variable alarms now. Bad news, nobody can afford to go to college. So Exactly. Turns out we could have kept waking you up.
Yeah.
Three-D printing the first thousand housings18:02
Exactly. So so the first about thousand units we sold, I actually three d printed all of the housings myself.
Mhmm.
At one point... My wife thought I was crazy. At one point, I had eight three d printers running in my basement, and four of those were actually dual head printers so they could print two sets of parts every single build. So it's really, like, twelve three d printers that were running twenty four seven in my house.
Jeez.
And
How many were you producing in a week?
Oh, I don't even remember back then. It was like I felt like I could make maybe at most 20 to 40 in a twenty four hour period, but that was just printing the housings. We then had to also assemble them and package them and, you know, install the firmware and all this other stuff. So we... Within a few months, we realized this is not sustainable for a long term business.
So with all the connections that we had before, we... The first step was we had to get injection molds built because the the biggest limiting factor was three d printing the housings just because that takes time. To three d printing... Print a housing could take eight hours, but to injection mold a housing can take about ten seconds. So from that first, hey.
Injection molds, and growing slowly19:46
I'm three d printing everything, and we're sort of hand assembling everything. Then we shifted to... We we we sort of knew at this point, okay. This is a product that is solving a lot of people's needs. So we were comfortable purchasing the injection molds then at that point.
And after that, it's sort of a little baby steps with every stage of a business is... If that makes sense. So it's it's not like, oh, one day we wake up and all of a sudden we're gonna have a second factory or ship to 20 other countries. It's it's baby steps. As you grow, you try to not outpace that growth with expanding too fast or selling in too many places too fast when you can't support the sales.
So we're quickly approaching five years now in business. So we launched February of... This upcoming February, five years ago. And every year has been some form of this incremental either improvements, you know, new products like we launched this year, major new software updates. Like, we've had those several years.
And it's it's all just about trying to not outgrow yourself and and what you can do and manage as a business while still, you know, solving that core problem that you need to solve. And, you know, that's the one thing we never want to get away from is this whole idea of Sugarpixel was to make sure my daughter wakes up to her alerts.
The one thing they won't compromise21:41
And
the whole reason we sell it to other people is to make sure they wake up to their alerts. Can it do a lot more than that today? Absolutely. But that is still the core number one thing is sort of every business decision we make comes down to that
Make sure it does and make sure it does the the core competency.
Yeah. And so if if we come up with a feature idea that would diminish that core purpose of Sugarpixel, we'll most likely skip it. If we come up with something that's competing against that, it's not necessarily gonna be a good fit for our company. So, you know, there's a lot of people I know in diabetes now just having met over the last decade of... That have started their own businesses too.
And that's sort of the the the main thing is you see these people, their kid got diagnosed, they got diagnosed, the family member, etcetera, and they wanna use their current skills to benefit that. I mean, it's you starting the podcast. It's me starting the Sugar Pixel, and countless other people have done this, is that once you know what you can do well, what are your own skill levels? You know, yours is talking to people and having these conversations. Mine is the electronics and the hardware.
Once you know that and come up with the idea that you're gonna turn that into a business, stay focused on that. Because I know a lot of people that have been hugely successful, not just in diabetes space, but in in any type of business where hugely successful and then they shift their focus or they expand their focus to something else, and that's the start of the business not being as successful.
Yeah. I... I've been the... I'll tell you though. The one thing that was the hardest for me to ignore was the many, many calls to make video.
Like, your podcast should be on video too. YouTube's popular. You should make video. And I was like, I can't accomplish all of that. Like, I can do what I'm doing.
I can do this part really well. If you want me to record myself, like, I don't record with people. That's the first problem. Like... So now I'm...
But it's two video feeds, and they have to match. And if you edit it, they both have to be edited together, and everyone's not gonna have the same quality or cameras. Like, it's not gonna work. And and it'll be a ton of time or a ton of time and effort for no real return and the juice just not worth the squeeze. And and the entire time I have in my head some interview from the nineties that, you know, I heard on the Howard Stern show where he's interviewing some incredibly famous person who's been making these movies that are just making all this money, and the person comes on and says, you know, I really wanna get into some serious filmmaking.
And he's like, why do you wanna do that? Like, your your movies are really popular. And then the person makes some shift, and you never heard from them again. And I I always felt like that. I was like, I'm good at this.
There's nothing wrong with being good at this. You you know, like like, let's just keep... As long as people need it and it's valuable, I'd like to keep making it like this. I... It it takes a lot of it takes a lot of self control not to get grandiose and think that because you did one thing, you could go do a ton of other things and then get fractured in a way that will stop you from doing any of it.
That... That's how you felt.
Yeah. Yeah. That's exactly that's exactly my mentality in that is it... It's too easy to get distracted if you're trying to do too many different things. You know?
So stick with the the thing that you know you're good at. And if it's doing well, there's, I mean, there's no reason not to continually improve, but there's a lot of reasons to not try and expand to different things, you know, like your video example.
Yeah. You also... It's hard to explain to people that a lot of times what you have is lightning in a bottle. And just because you accomplish it the first time does not mean it would work out the second time. And it...
It's not lost on me that the problem on social media that people are always like, well, I... You know, it's discoverability. I can't get anybody to see my... I mean, my thing's awesome, but if nobody... You know, I can't get anybody to see it or the algorithm won't pick it up or whatever.
If you think that's any different than opening a bakery in 1956 and not being able to get people to come in the front door when you're making the best scones in the world, you're wrong. Like, there's a randomness to all of this. And and when it works for you, there is no saying you could make it work again.
Oh, yeah. That's that's a 100%. I mean, you or I both, if we would have tried to do what we're doing, one year difference of when we started might not have been the same thing, might not have worked out.
Well, your flipbook idea is such a great example that it was probably just at a at a p... It's probably at a a slice of time in between one art style and another where you were just slightly ahead enough that it was interesting, not too far that it was foreign. I I I I I share this all the time. I don't know if he even remembers saying it at this point. I might say it more than he does, But I heard the film director Kevin Smith one time talking about how his movie Mallrats was a flop in the theaters.
But it has become over the decade since, like, what they would call a cult hit.
Mhmm.
Right? People watch it all the time. It's referenced still. Like, everyone knows the movie at this point. And when he tells the story, he says, I I thought...
I knew we had something, and then it just... It didn't make, like, a $150,000. It was in and out of the theater in, two days. Right? And then the following year, there's something about Mary comes out, and it's this wild, like, makes hundreds of millions of dollars success in the theater.
And when you stop and think about it, those two movies are not dissimilar in tone and and etcetera. He just made have been a tiny bit too ahead of the zeitgeist, like just a tiny... And think about it, like one summer ahead. And he puts out a movie that is provably over time what it meant to be and what it should have been and people like it. But when you try to make it popular inside of the world, I mean, a $150, like, what?
25 people go see it? Like, you know I mean? Like, no one saw this movie in the theater. And since then, it's, you know, been, it's been a darling on VHS and DVD and Laserdisc and streaming and, like, and probably has gone on to make way more money than something about Mary. And I just...
I don't know. I... It it occurs to me that, like, that flipbook story of yours is, it just... Like, that's such random luck. Not that you didn't put the work in or have the idea.
I think the same thing now when I'm making content for my stuff. I think we finally have the tools to make what I'm thinking, and now the world thinks that it's slop. If this would have existed fifteen years ago, it would have been magical. And now Oh, yeah.
You know
what I mean? And now instead it's missing the it's missing the... I don't know. The... How some people feel about it.
It's very... It's all very interesting.
What changed in five years29:35
Well, and the crazy thing is even in the five years since I launched Sugarpixel is the technology shift is radical. I I mean, it is so much advanced, and it's like every other day getting more and more advanced that had this stuff been around five years ago, I would have been able to probably make a product in half the time that was potentially better, potentially have more features, but would it have been too much too soon? You know what I mean? Like, the world may not have been ready for it at that time.
Right. Yeah. It's same exact problem. So what do you think you've learned by having to go on that slow journey?
That's a loaded question. So, you know, the one thing... Like like, if we look at the technology shift, especially in the last twelve to eighteen months with AI, so that... I hesitate to say it this way, but in many ways, that's a shortcut, a cheat cheat code, if you will, for the video game. If you already know what you're doing, the...
All the new tools just make you that much more efficient.
Mhmm.
If you don't know what you're doing, the new tools can make it drastically worse. So, you know, what I've learned from this sort of this having to do the slow process, having built businesses before the current technology shift that we're in now is learning all of the underlying stuff. So I I can code the entire firmware for Sugarpixel. If I had to redo it, I could recode the entire thing myself. Had those tools not been...
Or had those different tools been available back then, and I could have bypassed that and not had to learn how to code it, the the problems are, like, pretty immense that could happen. Now everything could be all great and peachy keen, but you could have you could have firmware bugs that brick every single device that you produce. You can, you know, you could have stuff because you're not understanding how to actually create what you're making. Those tools can give you a false sense of security, if you will Yeah. Where what you're doing might not actually be correct, accurate, etcetera, if that makes sense.
Yeah. I think you also miss out on but but here's a great example. Like, you just sort of said it in passing, but you're the one that made the loop
follow-up. Yeah.
Yeah. I mean, I'm sure you learned a lot doing that, and it's an app. I I use that app every day. And I'm certain so do a lot of other people. And if you weren't trying to figure out the rest of it, then that app might not exist.
Or somebody else might have had to write it or who... I mean, I don't really know exactly what would have happened, but I'm sure a lot comes out of that. Like, what do people want? What should it do? How should it look?
What don't... Like, what could we do that nobody cares about? Because that's always a... You know, I fight with that all the time just with my website. I was...
I I have really great resources on my webs... My website that people love, and I have great resources on my website that nobody uses.
Mhmm.
And... But they're digital. So if I make it and then it doesn't catch fire in people's imaginations, it's not a lot of skin off my back. You know, it's maybe a couple of days in my life are gone, but in the grand scheme of things, making something like this for a dozen years, it's no big deal. I did...
It doesn't feel bad to me. I just go, okay. Well, that didn't work out. You start building that stuff into a physical object and nobody cares about it. Now what you have is a bloated piece of hardware that turns people off.
So it... By going slowly, I would imagine you get to put in exactly what needs to be there and no more, no less.
Yeah. And that's, you know, it's it's... Eve... Even the... From a hardware standpoint, there have been so many hardware improvements in the last five years.
I mean, look at your current iPhone versus your iPhone from five years ago. I mean, they're drastically different Mhmm. In what they can actually do because of how much improved the hardware is. So even from a hardware standpoint, there's differences where you combine the two, you know, and I'm trying to think how to say this, but, like, go buy some random hardware that can do anything and everything. Have a robot write the software for it, basically just telling telling your little AI robot what you want it to do.
There's so much that can go wrong with that. But now unlike you, all you've done is, oh, I got a few... I got some content on my website that's digital that didn't pan out how I how I'd hoped. Yeah. Now I've got all of this hardware that, I don't know what to do with.
You know? And
Oh, yeah. Oh my god. What do you do? You go out of business and you and you apologize to your wife and start over again. That's what you do.
Yeah. Yep. Yeah. I just have a website that tracks the, FDA stuff around diabetes tech that nobody looks at. So...
Whatever. I will, I will take a look at
the No. Stop. It felt like a good idea at the time. It's not. It's okay.
I I also... Like, I have a website where... A web page where you can, where you can change carbs and fat and protein and settings and watch the... How it changes the curves, like, you put in insulin or if you extend the bolus or something like that. Just to...
So people can visualize what happens to blood sugar in the immediate... In the in the long term, in the short, you know, in the midterm and everything around a high fat meal. I think it's fantastic. I don't think five people have seen it. And it's it's okay.
Like, it's fine. Like, I like it, and I think it it might catch on. And if it doesn't, it doesn't. But then you make something else, you know, and people just, like, go crazy for it. Like, I have web...
I have stuff on my website. Companies would kill to get that much traffic on something. And I'm like, hi. I didn't think it would be that. Okay.
Whatever. You you know? And I don't need to tell you what it is right now because trust me, you probably already know what it is if you're listening to this. So... But, yeah, to your point again, if none of it works, it doesn't...
And then every once in a while, I go through and I look and I go, nobody's using this. And I I just sunset the... I closed the page. I'm like, that didn't work out. Or it did, but it's it's time has passed now.
It's not it's not a garage full of boxes that I've been three d printing in my basement for five years. This is terror... Like, what a what a risk to take. How do
you Well... And so that is one of the reasons from the very beginning. We build... We have built our own hardware. So with every product, it's actually our hardware.
Now I'm not building it in in my basement like the first three d printed versions, but they're custom circuit boards that are built for us. The new SugarPixel Plus, that's our own full tablet. I mean, we basically spent a year going out to build our own iPad, essentially Mhmm. From the ground up. One of the reasons we do that is just like your web pages where you thought this one was gonna be great, but it turned out nobody wanted it.
Yeah. As long as we have full control of both the hardware and the software, that... Those end up... Those sort of the analogy to your web page, they're features of our software. So they're just software changes we're making because we know the hardware can handle pretty much whatever we're gonna throw at
it. Mhmm.
And we've had the same thing. We've... I've had hardware I d... Or software ideas, feature ideas, I'm like, oh my gosh. This is gonna be the best feature ever, and then nobody uses it.
And I've had other feature ideas where I'm like, I don't think this is gonna be one, but I'll throw it in. And then that turns out to be some people's absolute number one feature that's on their SugarPixel.
Yeah. You also can't always trust people when they tell you what they want either because, you know... I mean, I guess I'll I'll give my own example. I have transcripts. I give a library of transcripts on my website because there are a small but dedicated group of people who prefer to read the podcast.
And I'm I'm not gonna argue with them. If that's what they want, that's great. They can go. It's kind of a library of all the the management series. You can go through and read them.
And people tell me, I... These have to be put into Spanish. They have to be. So I took the pro tip series and translated into Spanish, and it does not get any clicks at all. So I go, okay.
Thank God I didn't translate all of them into Spanish, or thank god I didn't do the thing five years ago when people were telling me your podcast should be in Spanish. And the best thing because of technology at the time that I could think of was to hire two voice actors to read. Can you imagine how much money and effort and time and... That would have been a disaster of time and money and effort that apparently nobody would have cared about, or I would have... Or or moreover about the bakery idea, or for whatever reason, I couldn't find a way to get into people's hands.
And so not... Doesn't even make it a bad idea. If I can't deliver it, it just... It it lays there. No...
Nobody knows it exists. So you're telling me that now by controlling the the software aspect and the hardware aspect, if you put something out like that, you can sort of just do what I do, which is, like, sunset something that... If you want to, or just leave it there. It's not really hurting anything. It's behind a button.
It's not a
Yeah. Right.
Yeah. I got it.
And a good... A a a perfect example of this. So the old Libre two... So this is probably three years ago now. It was before the the two plus and the three plus came out.
When the thing you built solves the wrong problem40:39
So it was just the Libre two and the Libre three. And the Libre two was... Wasn't a CGM. It was a flash glucose monitor, FGM. That was when you had to take your phone and tap your phone onto the sensor to get a reading.
Yeah.
Well, there's no, quote, unquote, follow-up for that. I mean, they still use the link up, but you don't get any readings. I came up with a way where we could actually... We wouldn't get readings like the real time readings, but we were... We had Sugarpixel where it could get alerts.
So we found out how, the Libra app would... Or not the app. The the actual sensor itself would send, basically the alert to the Libre app even though there was no reading behind it. Right. So you'd get this alert of, hey.
You're low, but you don't even know what the number is. Well, we figured out how to do that with Sugarpixel where you could use a Libre two that didn't even have readings displayed, like, in the Linkup app, for instance, and still have Sugarpixel alert when you were having the low and the high. And I was like, oh my gosh. This is gonna be fabulous for all the Libre two users. Turns out, I think we had maybe 10 Libre two users who were using that and who wanted that feature.
You know? So here, I thought I'm solving this great dilemma for Libra two users, and it was just something that they... You know, those
It might have been less effort for you to sleep in their house and just listen to their alarm.
Wake them up. Yeah.
Hi. Excuse me. It's John from SugarPixel. I think you're low. I just saved so much money by being here at your home to wake you up.
Do you've... Is that hard? Like, do you... Are you able to give that away, or does it feel defeating? Or how do you manage through those hiccups?
Oh, no. You just... You you know. You have to be able to move on. You know, running your own business, you just have to not get caught up in anything like that.
You you... I mean, you need a thick skin, first of all, and then you need to not treat anything like it's your own personal, you know, flesh and blood baby.
Not your baby. Yeah. John, are you saying that people have been unkind to you on the Internet at times?
Well... So I don't think... I I don't know if we just do if if we just do such a good job with marketing or our website or images or whatever that people think we're this massive corporation. But, yeah, we get... We do get some people that their their customer support emails or or contacts, it's like it's like how I picture, like, how I picture I'm behaving when I'm really mad about something and I think I'm calling, you know, that
Coca Cola?
Yeah. The Coca Cola, and I'm gonna get some random college kid from who knows where on the line. And I... First thing I'm gonna do is yell at them. Like, there's times where I feel like that's that's how we're we're, getting a few people contacting us.
And I'm like, man. Like, if if people were sitting face to face Yeah.
I would never talk. I'm answering this in my dining room, just so you know. Yeah. You know, it's funny. Yesterday, Arden came in here while I was working and she was, can you walk on my back?
And I was like, sure. And she goes, what are you doing? And I was I was I was sending a message. And and she's like, what what is that? And I said, oh, this person wants me to send the money.
And she's like, what? I'm like, I get contacted by a lot of people who think that I can support their endeavor. Like, they want me to, make a donation to their walk or make a donation to their thing or help them get their business off the ground. She's like, how often does this happen? Like, oh, constantly.
And I think I have the same problem you do. Like, I think I've done such a good job of this appearing like it's a like it's a big thing that's backed by a lot of effort and people. And and I'm like, I... They don't... She's like, it's just you in this room.
I was like, I know. I was like, I know that. I don't think they all know that. Anyway, this is a good time for me to tell all of you. I cannot make a donation to your thing.
Thank you. Scott, we're having a a thing. It's it's for type one diabetes. Would you like to buy a table? It's just $10,000.
What? I was about to ask you for a dollar.
Well, the the crazy thing, I didn't realize until I got into Sugarpixel a year or two is how many diabetes things there are. Like, there's... I'm convinced there's, like, three or four or five or 20 every single day of the year everywhere. Like, if I wanted to go to a diabetes
Event.
Event tomorrow, I could probably find one within an hour drive of my house. Like, there are so many... And that's... You know, we get we get the same type of emails. I would love to be...
Well, I've said all the time. If I had a philanthropist that would back us, I'd just give away SugarPixels to everybody because I... You know, that's why we're doing it is to help people.
Yeah. I I I take your point. I I... I've absolutely... I've had the same feeling over and over again.
I was like, I wish someone would just come along and be like, what's it cost you to make this for ten more years? Just take it and then go make it. And I would... I I always say I'm sorry to all the sponsors. I would gleefully call of you and tell you you're fired.
Not because I don't really like the sponsors or the people I work with. None of that. It's just... It's so much work. And and I just...
I I I I wonder all the time, like, how much more could I do for the podcast if I wasn't doing the business of the podcast? If that makes sense or not. Like, you know, like... But I feel like I could make way more content. I think I could make different feeds.
Like, I feel like I could put the content in different places and and package it together better and and put so much more effort and time into that part of it. But, I mean, part of the business is is keeping the business going. And, you know, and when I say the business, I don't mean my business. I mean the business of it. Like, the part that funds it and keeps it viable and all that stuff, it takes away from the part where you just hand it to people, you know, and go here.
It's a podcast. I hope it helps you. Yeah. That's frustrating. You know?
And, you know, even though we have a physical something versus a digital something, it's the same thing. It's it's all of the extra stuff of running the actual business side of things is is such a big part of it. Yeah. And you can't, you know, you can't just stop doing the extra things.
Like when people say that you wouldn't
be able to do your primary thing.
Yeah. I like when people are like, well, just hire somebody to do that. I'm like, don't... How much money do you think I make exactly that I could I could put put an organization together? But there's...
There'd be... I I swear I got this email once from a company, and they were like, you know, should I send this to your purchasing department? I was like, you just did. You just did.
Get those two.
I'm also marketing. I'm invoicing. I'm sweeping the floor later in case
I have gotten customer support emails where they're like, I'd like to talk to your manager or your supervisor.
You always are.
You always are.
Yeah. So once you get the the... You get it set up and it's a it's a device that people like. Right? So I guess that's the first thing.
You you put it out in the world and you go, okay. People like it. They're buying it. And, like, I still have an OG. Like, I have a three d printed sugar pixel.
And it's just not me pressuring you for a new one. I realize I don't rate. It's fine. But, like, but mine mine still works great, by the way. But, like, I have...
And I... It's not lost on me when I look at it. I go, my god. John John printed this in his house. And, and it works terrifically, and it's it's awesome.
It does exactly what I expected to do. But once you have a product like that that people are like, okay. It works so well. I'm gonna ignore that somebody three d printed this in their house. And you have to start May...
How do you start making more? Like... Or or did you quickly say, oh god. We gotta, like, we gotta get out of the... This production and go into...
So is there, like,
a is there anything point? We hit a point where we realized we have to... Our our biggest our biggest aspect that was slowing down be able to build more was three d printing the housings. Mhmm. So I had all of the knowledge from my past experience to build injection molds, get them actual real injection molded housings made.
How it actually gets made50:13
So that was the first major shift we had was to build injection molds and start doing, quote, unquote, real production where they all weren't just sort of, like, hand... Hand built in their entirety. Now we still hand assemble so many things. I mean, there's so much stuff that you can't can't have robots assemble things in production for most products. Even your iPhone has a lot of hand assembly in it.
But we're fortunate that through my days with launching a company on Kickstarter, there's a local company to me that is an electronics manufacturer that had actually reached out... It's, like, almost fifteen years now. They launched their company on Kickstarter within months of us. They saw I was local. They reached out for some tips, and I've been friends with them ever since.
So we needed sort of a a manufacturing partner. Our first our first step was a local company here in Ohio, and they still, five years later, they print print circuit... Not print. They assemble circuit boards for us as they have one of those machines that, like, flying around at a thousand miles per hour drops every component onto the circuit board and then solders them all. That's amazing, isn't it?
So it's a, quote, unquote, real production. So we we went to three d printing then to injection molding things. Then we actually have two other factories overseas at this point, and they've been added over the years. And part of that is about 30% of our SugarPixel shipments are international, not in The US. Wow.
Tariffs, and a factory outside the US52:19
So it doesn't make any sense to have to bring every product into The US and pay tariffs on it to come here. Like, even, let me back up a second. Some of the components used... That we use are only built in certain countries. So for instance, the the chip might only be built in one country.
The RAM might only be built in another country. You can't buy it in The US unless you're buying it from someone that has already imported it.
Okay.
So we realized we're paying tariffs on all of these individual components to bring them into The US, assemble them, and then ship that to another country. So by having a factory outside of The US also, it allows us to keep the the pricing of SugarPixel internationally a lot lower than if we had built everything here. You know, I know a lot of people are, you know, talk about the made in USA and things like that, but that's sort of the other side of it is I don't want a a a type one mom in Spain to have to pay more for her SugarPixel just so that I can say that SugarPixel was made in The US because it's cheaper for her if it's not made in The US due to how tariffs and shipping and things like that work. So over the years, we've added several other factories. We now build in three countries.
Finish assembly in three countries, specifically for that purpose of being able to keep the pricing lower internationally.
John, is that a is that a, the... I was gonna say... I was gonna use a bad word. But is that a is that a mind f that that enough people outside of Ohio wanted them that you had to work this out and that it was financially reasonable for you to do it? Like, do...
Is that, like, a a growth moment for you where you think, wow. This is spreading across the planet?
Yes and no. And I only say no because it happened fairly quickly Okay. Thanks to the Internet. You know? Because when when one person posts in the...
A picture of their sugar pixel in the Juice Box podcast Facebook group, well, you know, that Facebook group has users all over the world. Mhmm. So how the Internet works these days is once something's posted, you can expect people everywhere in the world to see it and start reaching out. So we we very quickly... I mean, within within a month or two, we had to, figure out how to handle shipping in all kinds of different countries.
Within probably within the first year, we had added a partner in Europe that could handle that over there. So previously, we were shipping, like, we're shipping through a service where it was just super complicated to deal with their VAT charges over there. Okay. So all of those steps... Like, looking back, yes, it's like, holy cow.
How did that happen? But it happened so fast, we didn't have time to catch our breath and and stop and
keep going.
Yeah. We just had to figure it out and keep going.
I remember when you contacted me one time and you were like, listen. You... We have a referral program. Like, you sell a lot of these. Like, I'll give you a code.
You can... You know, I'll pay you for each piece that comes in through your thing. And I I originally said that's final care. And and I... I'm like, I...
And you're like, no. Seriously, it's more than you think. Like, take it. And I swear to you, like, sitting before you, I found myself over the last thirty seconds, like, racking my brain. I have no idea what my piece of it is when they come through a link.
And I do... All I know is the way we have it set up, it hits my... It hits something where, like, it it... I don't even know how to explain. I think it comes through.
I don't even know, but I use it as, like... It's like my walking around money. So so if I, again, find myself, like, you know, buying a drink or a sandwich somewhere and I, like, you know, I use my Apple Pay. And every time I click on it, I think, oh, thank you, Sugarpixel. And then I I'm
glad we could help.
No. No. Really, you're you're you're keeping me, you're keeping me very... And it's funny because I don't know how much it is, and I don't even imagine it's it's, you know, altogether, like, lot of money. But it really does make me feel like I'm such a cheap person that it makes me feel better to get a dollar 50 drink for free than it would that if you sent me, like, a big check once a year.
I'd be like, oh, no. This is great. Like, I feel like I'm, like, skating through life for free.
Yeah. It's, sugarpixel.com/juicebox.
Is it... I thought it was customtype1.com/juicebox.
So funny story. We now own sugarpixel.com. So it was it was not take... It was, not available when we wanted to buy it. And and the, some random Internet entity, You know, we were using a broker to try and buy it from this other random entity, which we don't know who they are, and they came in with some astronomical figure.
We're like, yeah. We're not... We can't afford to pay you that much.
And Somebody tried to sell me bold with insulin.com one time for $90,000. I was like, what?
Yes. So it was something ridiculous like that. And so our trademark on Sugarpixel was still in process at the time. So we talked. We're like, you know what?
Let's just wait until our trademark's approved. Because once our trademark is approved, that domain name pretty much becomes worthless to that other that other person.
Sure enough.
So we went back to them after we had our trademark approval with the same lowball offer that we had originally that they declined, and they immediately accepted it. Mhmm. So... Yeah.
So Why didn't that happen? Sugarpixel.com/juicebox. Please, everyone. You're... You'd be paying for my, my diet Mountain Dew when I'm out on the road.
And we treat that. I mean, I I do know it's not it's not a, substantial sum of money for you. I'm glad it, you know, can buy a coffee here and there.
Oh, I hope I'm not being pejorative. I love it. I think it's fantastic. I'm not trying to make a... I I swear I wish everybody knew that I was being serious.
When you first offered it to me, was like, John, it's really fine. I don't... That... I don't need that. Like, it's okay.
But you were you were very insistent. You're like, just listen. It's coming through you. You might as well take it. You know?
And I was like, well, thank you. But I really don't. Like, I'm not saying, like, oh, I now realize that that doesn't sound good. You know what? It's funny.
I used to work for my aunt and uncle when I was right out of high school. And every Friday, I would walk into the office for my check, and I would put on a... Sorry. I'm making myself laugh. I would do a...
What's what's that Charles... Like, Charles Dickensy kind of voice. I would come and I go I go, hello, mother. I'm here for my pittance, and they... They'd give me my check.
And then one day, my... I worked for my uncle. My cousin pulled me aside and goes, that's incredibly insulting. And I was like, well, I don't understand. What do you mean?
They're like, but you're saying we we don't pay you very much money. And I went, well, you don't. And then she's like, stop. She was mad. She's like, stop doing it.
I've never mentioned her before, but I felt... I've always felt bad about it. I don't mean it that way. Like, I really mean, like... And I also don't mean, like, I have so much money.
I don't want your money. I a 100% want your money, John. Like like, it just... It was one of those things where I was just happy to spread the word about it.
And Yeah. And Yeah. We're happy to to give back a little bit, for that. Yeah.
Well, it's very nice. And I know that's how things work now, but they didn't work that way when I was first starting like this. And so it it was never a thing that occurred to me before. It's... I'm also don't see myself or the podcast in the same way that I think others do.
Like, I I once... I don't know if I've ever said this before. I'm happy to say this here. I was approached years ago by t one d exchange, and they were like, you know, we have this survey where it's hard to get people to take a survey. And I was like, oh, I'll try to get people to take your survey.
And, like, thirty days later, they came back and said, you just had more people take our survey than has ever taken it before. I was like, oh, you're welcome. Yeah. And I don't... Like, I don't know.
Like, it's... Because I am a really competitive person. If you told me that I'm successful by downloads or surveys or people in a Facebook group or something like that, I would just tell you I don't see big numbers. I see failure, like, everywhere. But that's just the part of me that, like...
I don't actually think of it as a failure. I just think of it as, like, untapped potential, usually. Yeah.
I'm I'm the same way same way with that. It's it's it's way too easy for me to look at all the little things, you know, that either I could do better, we could do better with, or things like that versus look at the overall of, wow. Look at what we were able to create to help how many thousands and thousands of people.
Well, I I got to stand... So first of all, the way I've been explaining this to people is that I'm the pretty girl that leans on the car at John Sugarpixel booth this summer. That's how I think of it. Anyway, like, we... John and I met two friends for lives ago and, I mean, knew each other.
Friends for Life, and the line at the booth1:02:31
Like, you had been on the podcast, but, like, didn't, like, know you.
We had never met in person before that.
And I think it... The way I tell the story, tell me if I'm remembering it correctly, is I drew an impressive crowd, and you were like, I should throw in with this idiot. Like, is that about how it felt?
That seems like the opposite of what I remember, but you can run with it.
I will
I will correct you.
You threw... You were... So... Anyway, we got together to do this thing. Right?
And John's like, we're gonna, like, have a parade through the room, and then we'll give it... Like, you're doing a giveaway. We'll do your giveaway and, like, my giveaway and, like, and whatnot. And and I was very dismissive because I I don't... I said to John, was like, look, you could do this.
First of all, I don't wanna be involved in the planning. Please leave me out of it. And and I said, and if this goes badly, I will pretend I don't know you. So...
That that part is true.
Yeah. 100% correct. If four people show up for your parade, I won't be one of them. I will walk away. So I don't need the stink of your failure on me.
Okay, John? So... But but but nevertheless, I think we might have drawn every living person at Friends Room.
It was... Yeah. It it it was a little more than either of us had expected.
Definitely didn't go the way we thought. And then once I saw it going right, I'm a bandwagon guy, I got on full board. I I peep... Like, once the first 50 people showed up, I was like, oh, this is gonna work. And then there was, like, another 50, and then I was like, there's a few 100 people here.
And then John's, like, leading, like, the... We were just gonna walk around the floor. Like, if you've never been to Friends for Life, it's like a lot of, like, tables and setups from different companies like Dexcom and, you know
We were going to have people come to our booth, like, start at your booth, and come to our booth at the end and do, like, a SugarPixel giveaway at our booth. Yeah. And you're... It was like
That wasn't gonna work. Hundreds of people. We need... So there's, like, some empty space in the back room. But as we kind of, like, took a lap around the room, that's where my competitive of this took over.
And I was like, I'm gonna get every living person in here in this line. And and we're moving around the room, and then I think I took it out in the hallway for a second just in case there were people out there and brought it back in again. And then you and I are, like, standing on chairs, like, to, like, a throng of people. And and I was like, this went really well. And, anyway, afterwards, John being a business person came up to me and he was like, hey.
Would you like to come back here next year with me? And I was like, what now? Because I was on the, I was on the pauper plan. Like, I I was down there through the kindness of Tandem Diabetes. Like, I I did some, interviews with some kids down there, that used Tandem.
And in trade, you guys will hear me say this. Like, a lot of people in my position will charge a lot of people a ton of money to do stuff like that. I'm like, just get me down there and, like, pay my hotel, you know, and I'll do the thing for you. Like... But I want a table.
So I was like, oh, I'd like to try to have a table at Friends for Life. I don't wanna pay for it. I also don't know that there's a ton of value here that somebody should be paying me for. Like, let's just do something equitable. So, anyway, I had a small table.
It was lovely. And John's like, I'm gonna... Like, I'll get a bigger booth next year, and we'll do, like, a Pixar... Like, a SugarPixel, you know, juice box booth together. And I was like, John, I don't wanna pay for that.
John's like, I'll pay for it. Was like, oh, then I'll be there. Count me in. But then at some point, like, it felt like weeks later, you called me one day and you're like, there are a lot of other events. Do you wanna come to them?
And I thought, oh, John. I've been avoiding those events for ten years, but okay. And I've had such a lovely time getting together with you and your family at event after event after event this summer. My family doesn't know me anymore, but I... I'm now very close with your children, which
is Yeah. I I don't know why everybody likes to schedule every major diabetes conference over the summer because, like, my whole summer's gone. Starting in April was our first one, and then the last one is in two weeks. But I hope you found them beneficial for you to be there for JuiceBox also.
I... So what I think I... I've learned something new at each one. And so at Friends For Life, what I learned is that's a meet and greet for me. If you just think of it as a as a business thing first.
I'll think of... I'll I'll break it down as business and personal. Like, so as a business thing, I'm not making a ton of new listeners at Friends for Life. It's more of a, oh my god. You're the guy.
Can I take a picture? Right? And which is absolutely lovely, and I really do a million percent enjoy. I don't leave there with extra listeners. I've...
You know, maybe it reminds people to listen again or something like that if they've fallen off or whatever, and I can't say for sure. But I don't leave an event like that after having met a thousand people and wake up to a thousand new listeners the next day, which if I'm gonna be honest about, you know, what I do is part of that is, you know, I... You gotta get new people. Personally, I find it incredibly fulfilling. Like like, being there and seeing people interact with each other and just seeing the comfort that comes over them being around a group of like minded, like impacted people, there's...
It's very, I don't like to say goofy stuff like this, but it fills your cup kinda thing. Like, know what I mean? Like, after a year of, like, hustling and doing the back end part of this, it is really nice to see people so happy and comfortable.
I'm this exact same way. You're still there on the clock, if you will, for business, but you're also part of the attendees, if that makes sense. Yeah. You know what I mean? Like, everybody's there for the same reasons.
It's just... To me, that's my favorite one from... For that same reason.
Mhmm.
The others, you know, ADA, ADCES, obviously, for different reasons, but those are more, hey. I'm on the clock hustling for business reasons.
Mhmm. Well, I I would I would say too that something happens at Friends For Life every couple of hours that if I wasn't in control of my faculties would maybe make me cry. Like like, you know, you just see something sweet or something sad or a kid struggling or a parent looking tired out of the corner of your eye or something like that, but then looking over at their kid and seeing how happy they are, you know, that kind of thing. Like, there's... You could easily get overwhelmed with emotion at that thing every every five seconds, like, genuinely.
Yeah. It's it's really lovely. And and... Anyway, and I I like that event. I've I've enjoyed that event very much.
Then you made me go to... I mean, then we went to the ADA. Right, the American Diabetes Association. That was in, some godforsaken place with humidity.
That was in New Orleans.
Oh my god. Everyone leaves immediately. What are you doing there? Okay? So what I remember about that mostly is twofold.
I remember walking very slowly from my hotel to the conference center so as to not break a sweat. So I would I would... I get up in the morning. I go just move very slow. Feel...
Like, because the worst thing I could think of is getting there and being moist. I didn't want that to happen. I'm also sorry to everybody for using the word moist. That ended up being, for me, a great thing to do because I am sort of like, oh god. I was I was trying to make the behind the curtain reference, but then, like, I realized that all the words, like, great and powerful go with it.
And I was like, that's not what I mean. But I'm a little like the Wizard of Oz in the diabetes space. Like, I don't usually come out from behind the curtain very often. Yeah. And so I don't do things like this.
And it... That made me realize that I have real business relationships with actual adults who I've never met, and that's not a good idea. So I really got to meet people in person and and to... They meet people I've known for sometimes up to a decade who I've never met in person, people who I speak to weekly who I've never met in person. And that was really something.
And stuff came out of that. Like, you guys are gonna get the bold beginning series remastered. Hopefully, I'm shooting for putting it out right at episode 2,000. And you're gonna get that supported by Minimed Because I had a conversation with somebody and I was like, I'd... They're like, what are you doing that you need help with?
And I said, I would really like to re... Remaster the bowl beginning series and put it back out in order, like, but I can't really afford to. They were like, well, what would that look like? And I said, well, you know, I would take out all the old bumpers and all the old ads, but keep in the content that people really enjoy and get it fresh in the feed again. They're like, well, we'll put ads in it.
I was like, oh. And I'm like, and that'll pay for the work that needs to get done to get it done. I was like, oh, that's awesome. Like, never would have happened if I wasn't there. I also had an experience at ADA where a lovely man, an endocrinologist came up to me and, like, embraced me and told me how much he loves the podcast and how valuable it's been for him and his patients.
And I have people tell me stuff like that online, but it really does hit you differently in person. It doesn't just feel like a person saying something because it's easy to say. Do know what
It does. And it it it... Back to your fulfilling comment about friends for life is those moments those moments happen at all the events for us. Mhmm. Just obviously more frequently at one where it's mostly people with type one, not doctors and and educators.
But, yeah, those are the those are the times where I step back and I'm like, okay. This is why I do what I do.
I I saw a number of people share with you that they felt like Sugarpixel had, like, literally saved somebody that they cared about.
Yeah. We get that we get that actually frequently. Mhmm. We had... One guy sent me a Facebook message, actually, while I think we're at one of the shows.
“How you saved my life last night”1:13:22
He was at camp with his son. So he was, I think, a, you know, like, a parent, shepherd, or counselor. Yeah. He has type one. And he was in a cabin, didn't hear his phone alerts.
His Sugarpixel at home woke up his wife. She couldn't get him on the phone. She called another parent that she knew was there, finally got a parent on the phone. By the time they got to him, I think he said he was 40. Pretty low.
But those stories where it's like he sends me a message and says, basically, here's the story of how you saved my life last night. That's the only reason we do what we do. Yeah.
It's
fantastic. Is to help people like that.
It's fantastic. It really is. And then we went to a... It's ADCES.
Right? ADCES.
Yeah. I It's 100% know what it stands for, but it's there's definitely a word
diabetes cert... Wait. Certify...
Oh, I think.
Diabetes certified... A d... Educators Society.
Should've just left it at CD. You made the whole thing complicated for no reason.
It's the educators conference.
Yeah. So there was... That was the one time that I thought, oh, this is my chance, like, to talk because what you'll see... Well, what you would see if you were me is that many, many people find their way to the podcast through their physician.
Mhmm.
And I thought, well, maybe I could go meet other clinicians who don't know about the podcast and tell them about it. And it's too early for me to tell how that went, but I can tell you that the website that I shared with those people, those like a... I have a place for clinicians to go to on the website where they can share series easily. It's getting brisk traffic.
That's good.
Yeah. So I think it's... It it reached some people. I mean, there were some people who looked right through me. It was also lovely, like, humbling at times because, you know, after you...
If you walk up to five people and you go, hi. I'd like to tell you about the Juice Box podcast. They go, I listen to the Juice Box podcast. You're like, of course, do. Why am I even here?
I've wasted my time coming to Ohio. I'm everywhere. I'm omnipresent. And then you get to the sixth person. You're like, hi.
Like to tell you about the Juice Box podcast. They're like, I don't know what you're talking about. They look at you like, you make a podcast? Get away from me. And and I'm like, okay.
Good. Well, not everybody knows about it yet. There's more ceiling is what that made me feel like. Yeah. And that actually...
Like, not that I didn't expect to reach everybody. I guess, like, sometimes you have takeaways from these things you don't expect, and one of mine was there's more people to find. I thought maybe I had found them. And... But there were definitely people out there who were...
Like, some of them were like, oh my god. I need stuff like this to help people with. Like, thank you for giving me this. And there were some people who didn't know who I was, and there were some... Plus I get to I get to work on my my stand up sales skills, which I think you'll agree are are not bad.
They're improving.
I'm I'm getting there. Really. It's coming together. Really is. Really is.
I have no filter. I just walk up to people and start talking. I don't even wait for them to, like like, focus on the idea that they're speaking to someone. I just I just start going. But I'd...
Another thing is... And to watch them learn about the SugarPixel and, like, the most fun I've had this year is watching people's... John brings this, this little platform that goes on the floor, and it has the bed shaker from the SugarPixel bed shaker, like, mounted inside the platform. So you can step up on it, and then it vibrates the holy hell out of you. And and to watch people, like...
Because you'll say to them, like, you know, this thing has a... It's an optional bed shaker that'll help you wake up if you don't hear the alarm. And you can see people kinda go like, how would that work? And then, like, what a brilliant simple thing to bring it with you to show them. You know?
Yeah. And that is the funnest part of the whole sort of sales pitch of telling people about it is seeing them when they step on that and feel the bed shaker go off under their feet.
And they think, oh, this would wake me up. Yeah. It's like... It's a comfort that comes over. There's...
Every once in a while, like, I saw a few 18 year olds who were like, I don't know. I don't think that would do it either. But it's it's just a really... It's... I don't know.
It's a lovely thing. And I actually... I'd I'd had enough of flying, so I drove to Ohio and back again. It gave me a little time to myself to think and be quiet, which I really appreciated. And and I had to agree.
Also, it should be said your your brother comes, who, I guess, is... You know, I don't know if you don't talk about him. Right? But he's... You know, he works works in the business.
Right? I don't know
how public don't we don't talk about it.
We don't talk about it. Yeah. I just met... I gotta know how... Yeah.
Chris has been great. Chris Chris works for the company also. So he's been sort of business partner in all of my varying ventures over the years.
Over the years.
Including this one.
And he's terrific. And your children, your son, your daughter, I don't know if you say everybody's name, but, like, really lovely people. Like, you should be incredibly proud. They're, like, wonderful, like, human beings and... But...
You know?
Yeah. And they they do great. So Lily, you know, she's the... Our type one. She's been coming every single year.
Mhmm.
So she's been helping at at all the booths, ADA, ADCES, Friends for Life, And even at the medical ones, you know, the ones where it's the doctors or the CDs, we don't shy away from, hey. We're a small family run business because this... That's the story of how the whole product even exists, why, you know, why we're even in business. And so she's been great coming to all of them. Elijah, this is his first year, and he came to every single one this year.
And I'd tell you what, he just... He killed it at Friends for Life. He had on a whole Wild West theme with his cowboy hat and his bandana, and we just let him run. And, yeah, I mean, I couldn't be more proud of of both of them.
Yeah. No. You have a lovely family. You really do. And...
But will Lily not be at touched by type one?
She will not. She had some other prior commitment for that day, but, so, yeah, Elijah, and Chris will both be back. So you'll see them again also.
Irony of that is, do you know who is gonna be attached by type one? Who? Arden.
Oh, fabulous. I look forward to meeting her in person.
She's gonna run my table at touch by... I said, listen. I just stand there, and you... You'll be alright. Meanwhile, there is half of me who thinks, like, she's gonna get she's gonna get inundated.
And I don't... Like, I'm... I guess I'm gonna have to prep her for it a little bit, but she'll be fine. But there is a world where, like, she... I think she doesn't realize that there are people walking around who think of her as, like, a two year old.
And it's and it's gonna flip them out to see her standing there as an adult, I think.
And she is sorta equal part... I hesitate to use the word celebrity as you with the podcast because of how you started the whole thing.
I think it's gonna be weird for her, but in a good way, and she's never been to an event before. And I actually... I'll just say this kinda quietly privately here. I think it's gonna be good. It's gonna be good for her to go.
Like, because it's not a thing she would, like, gravitate towards on her own, I don't think.
Okay. So I'm laughing because you you... Your voice got a little quieter. Well, it's a secret. And you said, I'm gonna say this privately.
Yeah.
You... It's a clue. It's a secret we're keeping.
So so we're gonna keep it quiet, to all the thousands of people Yeah.
Well, so the people that hear this know not to tell her when they see her. Don't go, oh, your dad tricked you into coming because he thought it was gonna be good for you.
Like, keep that to yourself, you
sons of... Just shut your mouths. Okay? Just smile and go, hey. It's hard.
Like, I... But, also, I'm telling people, so, like, go slow. Okay? She's never done anything like this before. But she did this earlier this year.
She and I... I'm sure by now people have, like, seen, but we we made, like, an Omnipod commercial together. And, it's really was her first time, like, being out. Like, not that she... She doesn't hide from her diabetes, and if you know her personally, you would see her devices constantly.
Like, she's not she's not shy about it at all. She doesn't hide it. She has no, there's no shame that's aroused. She just doesn't do this part. And that's, you know, her personality, and it's fine.
And I think that if you go back over the last however many years I've been doing this, you'll see that I I go to a great effort that... Isn't a podcast about Arden or it's, you know, like, it's... I do my best to keep those things kinda pretty separate. But I... Again, I think it's gonna be nice.
And I like going away. She's getting older now. It's cool to hang out with her sometimes and, you know, have those kind of opportunities. So, anyway, I'm I'm excited to see you there. I'm sorry that you missed me.
It's it's a it's one of the things that happens when you when you get around me. You get into this bubble and you go, what a lovely guy. And then I'm not there and your life feels empty. It's... You start...
I mean, have you had to talk to a therapist? It it wouldn't be uncommon. I've I've heard of it before. People are oh, Scott was there, then he wasn't. I just...
I couldn't handle it anymore.
Well, yes. But it was in preparation for having to see you again
and Having to... Yeah. Just talk to a therapist about how to handle it. Let me ask you a handful more questions about about your business stuff, and then I'll let you go. Are you at the keep it working, keep it growing part?
Are you at the there's more to do part? Like, do you start thinking about, like, this is a turnkey thing now? Maybe I should go do something else and run two things at the same time. Like, how do you imagine the the years going forward?
Oh, I do not want to start another company and, you know, let this run and... While I'm doing something else. It's... I mean, it's a full time job to to keep the company running. Now, obviously, we're a small team with just the four of us, you know, basically running the whole company.
But it's definitely not something that you can, you know, set it on autopilot or anything because there's always... You know, aside from the general business y side of things, there's always the new feature ideas you come up with, you know, new marketing ideas, things like that. The hope is the hope is actually that, you know, we... We're just getting started, and this is, you know, like, more coming over the years, not just, hey. We built a thing and here it is, and it's just gonna be what it is for the foreseeable future.
I mean, I ask because have... Having gotten to know you, you have an intense amount of energy. And in a good way... In a really good way. Like, I mean, it's funny.
I I think you and I probably mirror that, like, to the, you know, the way we think about things. And I find it weird when I tell people, like, making the podcast is really hard and time consuming because I think they must feel like, how can that possibly be? But it's the back end stuff that you can't imagine that takes, like, all the time and effort. But I just can't imagine you sitting still is, I guess, what I'm saying.
So the, you know, the interesting thing with me is I... I've come to realize it as a... Has run four businesses now that I reach a point where I actually get bored if it's... If there's nothing new. Mhmm.
You know? So the the new ideas, like, the the last year of working on... Well, actually, year and a half now because it's been... It's... We released Sugarpixel Plus six months ago.
So that last year and a half was, like, exciting for me because it's building hardware and software like Blue Sky. I can do anything I want for both of those. But when you get into the daily grind of business, the end of month inventory counting across... Have one, two, three... We have six, seven locations globally that we store inventory at.
And those aren't just completed products. Those are even pieces parts of, you know, like, the button for the SugarPixel Mini. How many buttons do we have? Like, do not want any part of having to do, like, inventory counting and logistics and things like that because my brain is constantly spinning
Yeah.
With new ideas. And so, thankfully, both my brother and Elijah do a fabulous job at the, I guess, more the the numbers data side of things. Mhmm. So, you know, as a as a guy started a business is... You also have to be self aware enough, and it's taken me decades to realize this through several different businesses.
Self aware enough to know when you need someone else to handle certain aspects of it so that you can best move the company forward. Yeah. I So for me, it's always been the... I have crazy ideas at times, great ideas at times, horrible ideas at times, but it's always the new ideas of of what keep me moving forward. Mhmm.
I I can't tell you. Like, I... The boredom is the wrong word, but it's exactly the right word at the same time. Like, I get to this, like, spot where I'm like, I should be doing something. Like, I don't know what it is, but, like, there's gotta be more to do.
I should figure out what there is to do and do it. And, you know, when you're busy doing something, like making a podcast that's popular, it's a lot of it is... Like, the conversations are the best part of it. Like, sitting and talking to people are fantastic. Then those conversations have to go...
You know, they have to get... You know, I don't do, like, a ton of editing as far as content goes, but you don't realize how much sound balancing and and things like that go into making... Like, so that when you turn it on, it's at one level, and John's voice and my voice are reasonably balanced, and you don't... That's... And the music doesn't come on and blur.
You know, it's... I know it sounds easy. It's not. And then there's, you know, an episode once a day every day for five days. And there's, you know, business relationships with people who are like, well, I want my ad to go there.
Or, you know, the ad says this, but we wanted it to say that. And, like, like, alright. Okay. And, you know, like, link link tracking and reporting back to people, like, okay. Your link is working and, like, the stuff that just, like...
It's just like, oh, I don't wanna be doing any of this. That stuff takes up a lot of time, and it makes you feel like all these ideas in my head are not being... Like, I do have things I wanna do for the show and for people, and and ice... I either feel like I'm ignoring something or ignoring a great idea that I'm having that I can't get, like, I can't birth to. It's a Yeah.
It's a strange feeling. And I can't really... I I I... The way you've got your kids working for you, that's brilliant. I can't get that to work for me
for some reason. So Well... And one of the great things with with some of the logistics and daily business things off of my plate is I have been able to work on more of the creative marketing and that... Those side of things. Mhmm.
So
No. You do a great job, John.
Do do you wanna hear a secret, Scott?
I think you're supposed to get quiet or not louder, John, but go ahead.
Oh, I talked at a whisper, but I moved closer to
You did. You got closer to the microphone. What's the secret? So
so you know how we've been doing the music like you've been doing the music?
That... Can we tell that story real quickly?
We can't tell that story. I don't have anywhere to go.
Alright. Alright. We're at ADA. We're having dinner. John does a thing that, like, I just...
I thought was amazing. He's like, let's just let the servers bring whatever they think is good. And I was like, well, what a great idea. I I don't know why I've never thought that before. And we're sitting there eating, and John's like, I wanna tell you about something I'm doing.
And he starts explaining it, and I'm literally doing the same thing, but we've never once talked about it before. And then I felt odd even bringing it up because I felt like I was about to say, oh, yeah. Me too. And that it would be really strange. But go go...
You start. What
you Well, and I even texted you, like, later that night. I was like, here's a screenshot of when I told my brother about this to prove to you that I'm not stealing your idea.
I just think what it proves is that you and I look out in the world, see the same things, and we had a reasonably similar reaction. Like, oh, I can see what to do with that. Let me try it.
Yeah. Yeah. Yeah. So so around the same time, Scott started working on you. Sorry.
I was talking to the listeners now. Understand.
They understand, John.
Don't worry. Breaking the third wall. You started doing music that's now on... Is it just juiceboxpodcast.com/jukebox?
Yeah. That's it.
There you go. Mhmm. Or you can click it right at the top of the the website, I think.
I'm sure
you're sure. Listening to the other day. Yeah. You started making this music for, your site, essentially songs related to diabetes. And correct me if I'm wrong, you're taking ideas out of podcast episodes.
Writing songs, and a live concert1:32:19
Right?
So what what first occurred to me was I I was online, and I... There was that moment where everybody was putting their text messages to song, and it was, like, clearly AI. Right? But, like, it was catchy, and it was, like, people were taking, like, their back and forth with their moms and stuff and turning them into songs. And I was, well, that's such an interesting thing.
And then one day, I thought, I wonder if I couldn't make, like... Like, if I couldn't turn, like, the pro tips, for example, into, like, children's songs because people are always asking me for content for their kids. Like, I want my kids to learn about the diabetes, but they can't really listen to these conversations. I thought maybe I could turn them to, like, like, one minute, like, you know, I don't know, like, songs for little kids. And I was doing that, and I was like, oh, that's working.
I like that. I like how that's going. And then I was like, well, let me make some for tweens, like, in the same topics, and I did that. And then it hit me, and I was like, what's a song? Because because while you're doing it, I don't know how you do it.
I write the song... By the way, there's quotes around all these words. I I I I write the song with Claude, but I... And and I used I used it to put it together as in, like, format, like, of, you know, lyrics and verses. I don't know anything about song structure.
I don't know anything about it. And then you move into, another app called Sunu that actually... You know, if you can hit it with style, like, you know, like, I want it to sound like this or like that, or it should have, like, a big band feel or something, and it kinda puts it to music. And then you can describe the voice you wanna use and etcetera. So I was like, okay.
And I... At some point, I looked at the lyrics that came back from something, and I was like, oh, they're so robotic. So I started rewriting the lyrics. And I was like, okay. Like, it should say this here and this here, and I'm like, then it should go more like this.
This is really great. Then I got stuck. And I said to Claude, my assistant Claude, I said, this one verse here, it's it's explaining. It's talking. It's not poetic.
And then it hit me. I was like, oh my god. All of the episodes with Erica are about how people feel. What's a song if not about how people feel made into a poem that somebody sings? And then I was like, all the episodes with Erica are gonna make really good songs.
And then I think they have actually. So Yeah.
My idea was basically leading up to Friends for Life. They had this Wild West theme. And I was like, you know what? I can make an entire country album just for Friends for Life. Mhmm.
It was just part of our sugar pixel marketing lead up to it. So we actually went so far as to create a band name, fourteen Novembers. Obviously, a take on Fanning's birthday, World Diabetes Day. But the reception of that went so well that as you know, I've been writing a lot more music since then.
Yeah.
And my structure's a little different than yours. I've played guitar for forty, thirty nine years. So I've actually recorded 10 studio albums in my life, full bay... Everything from full bands to me playing all the instruments. So mine...
The writing starts the same as I always have. The benefit these days is, like you said, I can plug my lyrics in to Claude and say, hey. I'm struggling coming up with something for this one line, where in the past, I'd be flipping through a thesaurus or I actually had a rhyming a rhyming thesaurus. I think that's what it is. Is that thesaurus synonyms?
Yes. I believe so.
Where I could start with words that I needed to rhyme with, and then it would give me synonyms for that. But that takes forever. Yeah. So I start with the lyrics, and then the music side of it is probably more of a mashup than yours. Some go all the way down to I've recorded singing in it.
I've recorded singing in it. I've sang the guitar line that's in my head and then asked the computer to change it to a guitar, if that makes sense.
Yeah. Sure.
But we... What what we've been working on is we're actually trying to prep for a full live concert next year. So I'm not gonna say where because it's still in the planning, but we've gotten approval from one place that we can fit it into the schedule. So we're actually looking... I intentionally wrote all the songs for a female lead vocalist.
So we're actually looking for a female lead vocalist. I play guitar. Chris plays bass. We've both played together in bands for years, and then we have a drummer already. So we're actually prepping to turn what started as this sort of fun thing of writing songs about diabetes for Friends For Life into a full band and a full concert where every song is related to diabetes.
That's amazing.
Yeah. I So we're we're pretty excited about that.
I believe if someone's gonna accomplish that, it would be you. So
Thanks, Scott.
I fully expect to be standing tapping a tambourine watching you guys play thinking like
Do you
Oh my god.
Can you keep a beat with a tambourine?
Not at all.
Then you're not then you're
not Where my genius lies, John? Listen. Where my where my musical genius lies is that I... Like, I hear the words, and I go, oh, you know where this would have worked great? It would have been great in, you know, the...
Like, I... Like, one of the songs I made, I made it to feel like it could fit in the waitress play. Like, the the Sara Bareilles because I like the cadence of the way she sings and everything. Now you can't just tell so people know. You can't say, hey.
Just make this sound like Sara Bareilles. Like, doesn't work that way. But you can do a little bit of, like, sitting down and going, when I think of Sara Bareilles, I think of this. I think of this. I think of these, like, these ingredients into her voice and her style.
I wanna build a style around that. And so, like, that's how I did it. I was like, I... This is the... I wanted to be a female voice.
I wanted to do this and this and this and this and this. Like, let's build a style. Then you plug the style into Sunu, and then it tries to mimic that style.
And then That's that's exactly how, for lack of a better word, analog songwriting works is, you know, you don't... As a human, I don't magically grab my guitars and some lyrics that I wrote and spit out something random. Usually, my brain has a style already, other artists, maybe even a few songs where there was some hook that I was like, oh, some riff off of that is slightly different. You know, pretty much every single combination of notes that can be made has already been made. Exactly.
Yeah.
You know what
I I'm sorry. So humans humans write in that exact same way.
I I find myself thinking this must be how it works. Like, I am a... What I've learned about myself, John, is I am a singer songwriter musician who can't sing and can't play, I can't play an instrument, and probably, you know, can't do the rest of it either. But what I do know is I like language, and I can I can? I like the the kind of the pentameter of words and, like, the way things bounce and feel and, that kind of thing.
And so I get the words. So what I've learned to think of... The way I think of it is I did write this song because what I do is I bring Erica on. I pick the theme, and then we talk about an emotional idea around type one diabetes. I am the one that they're not preformed conversations.
I ask questions. She kinda relays back a therapist perspective. Right? And then I ask more questions. So when that episode is done, I built I built that episode out of my own brain live while I was making it.
And then I basically go to Claude, I go, there's a song in here. Go find it. And then it brings back elements, and I go, nope. That's not the right element. Like, it's it's I'm...
I know this episode. Like, this is where it is, and they go, okay. I missed that part. It brings back those elements. Then I take those elements and build them into a song.
Then I let it... I spend so much money on Sunu for... That gets that gets erased because I just need to hear it once. Like, what I realized is that in a real situation, I would have somebody with a guitar strum a little chord and sing along, and I go, oh, no. Not like that.
So I have it do that, and then I go back and I go, it's too much like this. That's terrible. This doesn't work. Like, we have to change these words here. That...
The genre I picked was way wrong. Like, let's try it in this genre. Any song you've heard, I have in 10 different genres until, like, it hits me and I go, okay. Here's where it fits. And you have to work around the limitations of the software because the software wants to write country songs.
Do do you know what I mean? Like, it leans into that into that that bounce, like, really well. This is a a crazy good job of it, actually. Yeah. Anyway, so I have a bunch of adult songs I now hear back from people.
I get notes that sound like this. I can't believe I'm... I've played a song made by AI more than once. I really like this. This one's great.
But what I learned more was, like, I made this kind of, like, like, this kind of, like, anthem about pre bolusing, and I got a lot of notes back from people that are like, this is really fantastic. Like, who would make music about pre bolusing? No one. Yeah. I would.
I think it's incredibly important. So we'll see what happens.
Yep. So what I love is a lot of years are like that, like, about pre bolusing or some of the ones I've listened to the... That are made for the younger kids. Yeah. You know, like, how they're feeling and stuff like that.
With the... So the one we did for Friends for Life this past year, a lot more of them were leaning heavy into straight up diabetes things like, you know, my CGMs beep. You know, there's something beeping
Mhmm.
And they're trying to find what it is. Is it the pod or the CGM or whatever? With all the new stuff, I took a different approach is all the bands I've played in in the past have been sort of, like, pop rock general type of vibe. Obviously, there's varying degrees of that. But I started as, okay.
I'm gonna write a pop rock album that's really good music and then fit diabetes into it, but not necessarily always in your face. There's a few songs where if it was on the radio, someone without type one that didn't know anything about it would have zero clue it was a song about type one. I... Yeah. Someone who's type one, the only the only words in it are, you know
Imaging. Low
and a high Mhmm. A crash. So there's words that paint the picture when someone knows this is specifically written about type one.
Yeah. I'm not happy till my song has... Is, like, double entendre. Like, so instead of, like, don't don't everyone go do this, but I was listening to Groove Is In The Heart by Dee Light the other day, and the opening line is very sexual. And I did not realize that at first.
A song that I've known for twenty five years, I've never thought of it that way before. And I kind of... I I do the same thing. I I say to myself, like, this needs to be a song somebody would actually listen to. Yeah.
And that that gives people with diabetes the feeling that it's for them without it feeling, like like I was saying earlier, like someone just singing along to words about diabetes. Mhmm. And and I've I've... Again, you and I are, the same person. I've been, like, focused on that for whenever I get a chance to...
I'm not sitting down trying to make an album like you are. But once in a while, I'll I'll hear an episode of the podcast, and I'll think, that person's life is a song. And so... And and I and I will sometimes take a day of my life to make a song about it. And then I put it out.
I'm like, I don't know if any ability to hear this or not, but I even feel more connected to the conversation after I do that. Oh, yeah. I bet. I bet. So I've done it a few times like that.
I'm sure there are some people that will hear this and just, like, yell at their radio. I have to tell you at this point, if you're a person who says AI slop, I just assume you're just trying to make a political statement. So you should go listen to them. They're they're pretty good. And if you don't wanna listen to them, don't, but, you know, whatever.
I... Listen. I use AI for a number of things. My website is maybe the best collection of information for people with type one diabetes that exists, and it just... I say all the time, it it wouldn't be there if it wasn't for AI.
So Yeah. You know, I'm doing my best to try to help people with things and I'm trying to use the tools I have at my disposal. And I have to be honest, I have fun making those songs. So
Yeah. It is it is a blast, and I've made some that will never see the light of day for, you know, anybody other than myself. But
I'm writing one for my son. I've been writing a song for my son for a while. Like, I don't know if I'll even... Like, maybe I'll give it to him one day. I don't know.
Or maybe I won't. It... But it keeps me... It's interesting because it it lets me be creative. It lets me learn the process, and it helps me remember this moment in my life with my kid.
Like, it's it's a it's a it's a nice way to practice. Also, I, you know, I was at a bar three nights ago listening to a, you know, a a real band play music, and it's awesome too. Like, I'm not saying any of it, like, should take the place of anything else.
But Yeah. I know that's awesome. We're hoping to do both with this.
But, yeah, you're gonna take it in and out of year. You're gonna take it something from the real world, put it in the digital world, take it back out of the digital world, put it in the real world again.
Yeah. That's that's what the that's what the hope is. And we're actually... We've been talking about... Behind the scenes, I can...
Listeners can hear this. So you and I have been chatting about doing another livestream together like we did for our product launch. So it's looking like that's gonna be the first week of October.
Oh, coming up. Okay.
So we're gonna release the first album of new music here at the beginning of October, and I've been working on not just lyric videos, but for a lot of them, full blown music videos. So John, let me pull this idea. Step.
You become a Twitch DJ for diabetes music made on AI.
Oh my gosh. I don't know how to use Twitch. So
I don't either. But gonna work. I know if I put it in your head and you wanna do it, it'll get done. So I'm just saying it out loud to see what happens.
Yeah. Social media and Twitch and all of those things that... You know, I'm a little past the age where I don't even really care to learn them anymore.
I love that you said a little. Thanks. Yeah. You're welcome. I...
Because I'm well past the age, and I really don't care. And yet I put up an episode today with, like, a really popular diabetes TikToker. And I asked her, like, during the thing. I'm like... She's like, you should do this.
And I'm like, I really don't think I should. She's like, no. I... Like, I would want you to make this content. I'm sure other people would too.
And I was like, I really don't feel like that's right for me, but I don't know what I'll do. So we'll see.
Well, back to the earlier discussion on, you know, keeping the focus on what you do best. Yeah. Like...
Well, the problem is is what I do best is fed by social media too.
Yeah. Well, it seems like the whole world is fed by social media these days.
Right. Right. So we'll see. Alright. Well, John, I appreciate you doing this with me.
It's very cool for you to share how you came up with the idea for your company and, you know, sort of a founder story here of of how you got through it all. I I love your success. I hope it goes on forever. You're a really good dude. You know, seriously, like, I I hope people know.
I don't I don't have a lot of experiences where I leave people and think, oh, that was nice. I missed John. But I did have a really good time this summer, and I'm looking... Are you gonna make me do it again next year? Right?
So I'm looking forward to doing it again next year.
Yep. We are doing it next year too.
I just I just don't wanna leave my house. That's all. I just... I... Once I'm there, I'm fine.
But I complain a lot on the way... John knows. I complain a lot on the way to this.
Do you want one of those little robots that has a screen for the face where you can just, like, control your robot, move it around, and you're on the screen?
I'm not gonna be happy until I can get into a pod in my living room that goes outside and flies to where I'm headed, and that I can sleep in it so I don't know what's happening. If you can get me to that or or that Star Trek thing where they take you apart and then put you back together somewhere else Yeah. I'd be good with that as well. I just like... And I don't even dislike travel.
I don't know how to explain. I just very much enjoyed complaining. And so my wife's like, I come back from one of these things. She's like, how was someone? It was really great.
And I talked, like, all... She's like, you about it for, like, two weeks before you went. I was like, wow. I know. I was like, and I will complain about the next one before I leave, which I will probably have a great time at.
I just wanna be clear. Find the poor person at Omnipod who had to talk me into being in that commercial that's where everybody said 100 over and over again. Yeah. And I'm sure she'll tell you about the unending phone calls of me just complaining before I
said yes.
At one point, I begged her not to ask me to do it. I was like, please don't do this. Please stop. She's like she's like, you don't wanna go away. They'll be sunny.
And I'm like, ugh, leave me alone. Then I went and did it. Had a fantastic time. Anyway, that's my own problem. Thank you, John.
Hold on one second for me. Today's show is sponsored by Tandem Diabetes Care, the Eversense three sixty five, and Touched by Type one, who you can learn more about on Facebook, Instagram, and at touchedbytype1.org. Head now to tandemdiabetes.com/juicebox and check out today's sponsor, Tandem Diabetes Care. I think you're gonna find exactly what you're looking for at that link, including a way to sign up and get started with the Tandem Mobi system. I'd like to thank the Eversense three sixty five for sponsoring this episode of the juice box podcast.
And remind you, if you want the only sensor that gets inserted once a year and not every fourteen days, you want the Eversense CGM. Eversensecgm.com/juicebox. One year, one c g m. If you or a loved one is newly diagnosed with type one diabetes and you're seeking a clear practical perspective, check out the bold beginnings series on the juice box podcast. It's hosted by myself and Jenny Smith, an experienced diabetes educator with over thirty five years of personal insight into type one.
Our series cuts through the medical jargon and delivers straightforward answers to your most pressing questions. You'll gain insight from real patients and caregivers and find practical advice to help you confidently navigate life with type one. You can start your journey informed and empowered with the juice box podcast. The bold beginning series and all of the collections in the juice podcast are available in your audio app and at juiceboxpodcast.com up in the menu. Thank you so much for listening.
If you're not already subscribed or following the podcast in your favorite audio app like Spotify or Apple podcast, please do that now. Just hitting follow or subscribe really helps the show. And if you'd like to go a little further and leave a review in Apple Podcasts, that would be fantastic. But most of all, sharing the Juice Box Podcast with someone you know or someone you think can be helped by it, that's the biggest thing you can do for the show. I'll be back very soon with the next episode, so don't forget to check your apps.
Read the full disclaimer
© 2007–2026 Juicebox Podcast. All rights reserved.
#1971 Next Person Who Speaks Loses
Next Person Who Speaks Loses
Jackie Waldie is a special education advocate, a former teacher of the year, and a mom of a kid with type 1. She and Scott take apart the 504 meeting — what to ask for, and how to actually get it.
Jump to a moment
- She has been on all three sides of the table. Jackie Waldie is a non-attorney special education advocate, a former classroom teacher of twelve years and her state's teacher of the year, and the parent of a child with type 1. Her most useful admission comes from the teacher years: she once had a fifth grader with type 1, got handed a 504 plan, received no training at all, and was told the girl could take care of herself.
- A 504 is not one-size-fits-all, and that's the point. An elementary plan should look nothing like a high school plan. A building with a full-time nurse produces a different plan than a rural school with none. Her test for any line item: is it reasonable, and does it provide equal access, health, safety and protection? The right answer is neither a bare-bones plan nor the entire circus.
- The crystal ball line, and how to beat it. Administrators tell parents they can't answer a hypothetical because they don't have a crystal ball. Jackie's counter is to arrive with history instead of hypotheticals: we know a fifty on the playground is going to happen, so who is trained, what supports exist, and how does it get written down so it follows the child? Scott's framing pairs with it — you aren't building guardrails to stop things going wrong, you're building a response for when they do.
- Scott's negotiating tactics, stated plainly. Make the ask, then stay silent — the next person who speaks loses. Put yourself slightly below the other party and let them feel in charge while you move them where you need them. Open by thanking them and sharing good outcomes. And every year, hand back something from the plan your child has outgrown, so it feels like you're lightening their load. It isn't a contest to win; it's about getting what your kid needs.
- Three ways parents walk in and lose. Guns blazing and angry before anyone has spoken. Completely uninformed and grateful for whatever they're offered. Or overwhelmed and in tears. Jackie's blunt version: you have to get yourself right first, because this is your child's life and it's their fortieth meeting of the week. She also notes the step most parents skip — writing up your own notes afterward and sending them to the school so they land in the file.
- 504 plan builder — The free tool Scott describes building in this episode — toggle the accommodations you want, with explanations and pushback responses.
- Jackie Waldie — Inspire Education — Jackie's advocacy practice. She is also on Facebook and Instagram.
- Diabetes Pro Tip series — Episodes 1000-1025 — the management foundation behind everything you'd ask a school to support.
- T1D Exchange registry — US residents 18+ with type 1 — take the survey and support research.
Every word of the conversation
Cold open & sponsors0:04
Hello, friends, and welcome back to the Juice Box podcast. Hey. At juiceboxpodcast.com, there's a five zero four builder. Go to juiceboxpodcast.com. Go up into the menu and choose five zero four builder.
After you listen to all this, you might wanna check out. While you're doing other things on the Internet, t1dexchange.org/juicebox. Take the survey. US residents 18 or older who have type one diabetes, when you complete that survey, you're helping to move type one diabetes research forward. T one d exchange dot org slash juice box.
I hope you enjoy this. On today's episode of the podcast, there will be nothing that you should take as advice, medical or otherwise. So please, please consult a physician before making any changes to your health care plan or becoming bold with insulin. I've got two OG sponsors for you today, Omnipod five and Dexcom. That's right.
The episode that you're about to enjoy was brought to you today by Dexcom and the Dexcom g seven, the same CGM that my daughter wears. You can learn more and get started today with my link, dexcom.com/juicebox. And this little slice of podcasting perfection is also brought to you today by the Omnipod five. The Omnipod five is a tube free automated insulin delivery system that has been shown to significantly improve a one c and time and range for people with type one diabetes when they've switched from daily injections. You can learn more and get started today at my link omnipod.com/juicebox.
At that link, you can get yourself a free starter kit right now. What did I just say? Free. Terms and conditions apply. Eligibility may vary.
Full terms and conditions can be found at omnipod.com/juicebox. You'll find those links in the show notes of the podcast player you're listening in right now and at juiceboxpodcast.com.
Teacher, advocate, and type 1 parent2:03
Well, good morning, Scott. I am Jackie Walde. I am a non attorney special education advocate. I am a mom of two awesome children, one of which has type one diabetes. I am a wife of a soldier who is getting ready to retire.
So that's very exciting. And I'm a former classroom teacher. So I really have so many unique experiences to bring to the table when we're talking about type one diabetes from a parent perspective, from a teacher perspective, and now from a non attorney advocate's perspective.
Alright. I can't wait. And this is very timely. I'll explain why in a second. But real quickly, who told you those kids are so terrific?
I just know they are because I'm a professional.
You ever tell them that? I'm like, I know you're good kids because I was a teacher once.
I do.
Yeah. Yeah. Do you I it's not a terrible thought. Like, I've seen bad kids. You guys aren't doing you're you're not doing terribly.
Thanks for being in the fight. So I'm gonna start by saying, I listen. I have a ton of conversations, and I don't know where all my thoughts come from all the time. Right? So I'm I've been very worried recently that I heard something somewhere and didn't realize I heard it.
How the 504 builder got made3:25
I'm actually gonna reach out to the person to make sure that that's not the case, but I've done some double checking. I don't think that's what happened. I just think there's only so many good ideas in the world. But I was doing an an ask me anything, but that sounds dumb when you're older, doesn't it? I was doing an ask me anything the other day on my on my Facebook group where, basically, I'm editing the podcast.
And on a different screen, people are asking questions, and I'm sort of going back and forth editing and answering questions and stuff like that. It's a way to keep me from wanting to throw myself out of a window while I'm editing the show. So, I'm answering a ton of questions, and this one person says, I need help with a five zero four plan. Okay. And I I clocked it in my head, but it was not a it wasn't a quick response.
So I kinda let it go by, and I thought, oh, I'll come back to it later. And so I'm going back and forth, and then it just hit me. I have my old a number of my old five zero four plans. And now that the world has changed, couldn't I just give them to, you know, my assistant, Claude? He's French sometimes.
Yeah. And and asked Claude if he could maybe just turn them into a document that people could type into and put their names in and then make changes to if they wanted to. Right. And so I I had that thought. And then I was like, why am I limiting myself to that?
Like, how did I make my 05/2004 plans? I went to all these other websites, ADA,
three
all these places that had that this stuff, and I read like a lunatic while I felt like I was gonna cry for days at a time.
Absolutely. Right.
Right. And I'm making notes, and I'm saying, well, that seems important, but this one doesn't. That seems ridiculous. I I, at one point, looked at, like, some people's five zero four plans, and I was I'm surprised there's not a Ferris wheel in one of these. Like, you know, like Mhmm.
Johnny can't be happy if we don't have a Ferris wheel for him to ride on. Like like, some of this some of this stuff seems silly to me, but then over the years, I've heard people say how things that I thought were silly were very, like, kinda poignant to them. And then I just I just said to my assistant, I was like, why are we limiting ourselves to my five zero four plan and my ideas about what this is? Like and I had it, like, deep scrape the Internet for, you know, all these, like, five zero four directions. And before you knew it, I had, like, rules that exist in every state.
And then I was like, what am I doing? I was like, just build this up so that people can just go through and choose which ones they want and which ones they don't. And and give them explanations for each line. And don't even make them write it down, like like, I don't know, make make it like a like a toggle switch. Like, yes.
I want this one in. No. So you can go down and and read and click. And then before I knew it, was like, and what if they push back? And what if they have questions?
And what if like, how do we prep them? And I just turned it into a a really, I thought, pretty cool web page. And then I turn on the machine here this morning, and I'm like, oh, Jackie's here. And these two things are, I think, completely detached from each other that you're here today and that I did this last week. But I don't know because I don't know how the subconscious mind works.
Why there is no one-size-fits-all plan6:38
So Right. I think it's serendipitous. I mean, that's usually what I use. You know? Yeah.
I feel like things align. And I think what you're doing is fantastic. It's such an interesting conversation. So from my perspective, I completely agree. We don't want to limit ourselves with a five zero four plan, but it's also not a one size fits all.
So a child that has an elementary five zero four plan is going to have a very different five zero four plan than somebody in high school. Okay. Maybe somebody has a full time nurse in their building or they have a one to one aid. That five zero four plan is going to look different than somebody who is maybe in a rural area. They don't even have a school nurse.
Yeah.
Right? And so I think that understanding what's reasonable kind of when you were talking about, you know, having, like, the the the entire circus inside your five zero four plan. Right? You you always wanna say, hey. What's reasonable?
But you also wanna make sure it's providing your student equal access. Mhmm. And it's there for their health, and it's there for their safety, and it's there, you know, for their protection. And so I think that's why five zero four plan seems so complicated because parents will often go in with their initial diagnosis of type one diabetes. And just like you said, I cannot tell you how many people sat in my office crying their eyes out
Mhmm.
Just with that fear of we don't know what school's gonna look like. We're barely surviving this ourselves. We're a new diagnosis. And they go into the school, and they kinda trust that the school knows what they're doing. But, really, the school is operating from, well, this is what we've always done with our students from with diabetes.
Yeah.
They're maybe not necessarily operating from a place of training, knowledge, and firsthand experience.
Maybe. Some schools are. Jackie, that was very kind when you said maybe. Well,
some schools might be. I have a a school nurse that is, you know, fantastic, and they're doing a book study on it. They're doing the Pink Panther book, and they're bringing people in to talk about firsthand experiences. And, you know, so I have those stories of excellence. And then I have those nightmare stories where, you know, you're sitting across the table from an administrator and they say, diabetes shouldn't even qualify for a five zero four plan.
Oh. And it takes everything you have. Don't it out. Yeah. Don't forget too that you could have a scenario at an institution that's a fit a fantastic situation, and then someone loses a job, changes jobs, somebody moves up over top of them.
And before you know it, you know, you're out there telling people like, oh, you know, that school, that's great. And then they get there and, like, it's not been my experience. They don't seem to understand. It only takes one person to move out of a job, and that's it. I you know?
I say that in the opposite all the time when I'm in these meetings. I say it takes one person to be dedicated.
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Terms and conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox. The Dexcom g seven is sponsoring today's episode of the podcast, and it features a lightning fast thirty minute warm up. Whoo.
Thirty minute warm up time. That's right. From the time you put on the Dexcom g seven until the time you're getting readings, thirty minutes. That's pretty great. It also has a twelve hour grace period so you can swap your sensor when it's convenient for you.
All that on top of it being small, accurate, incredibly wearable, and light. These things, in my opinion, make the Dexcom g seven a no brainer. The Dexcom g seven comes with way more than just this. Actually, up to 10 people can follow you. You can use it with type one, type two, or gestational diabetes.
It's covered by all sorts of insurances, and this might be the best part. It has alerts and alarms that are customizable so that you can be alerted at the levels that make sense to you. Dexcom.com/juicebox. Links in the show notes. Links at juiceboxpodcast.com to Dexcom Omnipod and all the sponsors.
But you can remember it. Dexcom.com/juicebox. Check it out.
It takes one person to believe.
It should be in positive. Yeah. Okay. I could I could have gone at it from that perspective. Yeah.
No. But I I'm gonna tell you, like, I have a a lot of experience with this, and I'd like to make this if you have time to really, like, have a nice conversation, you know, I'd like to give some background and get your feelings, see how things have modernized or changed since, you know, I've been at it. So Sure. I'll just start with you know, my daughter was diagnosed when she was two.
Mhmm.
And I had all the fears and all the things were going wrong that everybody else experiences, generally speaking. And by the time she was four, I was already thinking, oh god. Next year, she's gonna have to go to school. Mhmm. And at that point, Arden was, you know, MDI and not even like a like a pen.
Arden's actually never even used a pen. We had, you know, syringes and vials of insulin and a meter. Mhmm. And that was kind of it. So I had two focuses getting her to to school.
One, I wanted to get her onto a pump and because I just couldn't if I'm being honest, I couldn't stomach the idea of someone else stabbing her. That was really sort of just it. Right? I didn't I don't even know if that was a real legitimate thing I should have cared about it or not. I just know that I couldn't I couldn't make myself right with it.
And and I wanted them to be prepared. I wanted to have a five zero four plan in place. So I go into the school at the end of the year previous to when she's going to begin. And they and I'm not joking, laughed at me in the office. Ugh.
Because I'm like, I'm here to work on getting my daughter's five zero four plan set up for next year. And they were like, we don't we don't do that ahead of time. And I was and I my first thought
was you do.
I go I go, what are you gonna do on the first day? Like, it like like, let's say that you have me in on day one and we get this thing set up and everybody understands. In a couple of weeks, everybody's, like, right on, and they know what's going on. What happens in those two weeks? Mhmm.
And I think they thought I was out of my mind.
Mhmm.
Like, sincerely. And Mhmm. So they they refused, then and I acquiesced. And then we started doing it at the beginning of the year. And I had been working the whole summer, like, know, on all the different websites that were available at the time, pulling information, trying to like, other people's five zero four plans to look at and trying to be reasonable.
Like, I didn't wanna go in there and ask, you know, for you know what? You know, she really would be more comfortable if she had a tiger. You you know what I mean? Like, any anything yeah. Right?
I was trying to be I was trying to be measured. And I came up with a document that was a couple two, three pages long. And I showed up for my meeting, and then the guy laughed at me again. And he said, no. We have a five zero four plan that you can use.
And I actually thought, oh, good. That's great.
Yeah.
And he left the room. He came back in with a sheet of paper that looked like it had been, I'm gonna say, you know, photocopied. And it had five bullet points on it. And I looked at it, and I said, if you try to keep my daughter alive with these five things, she's not gonna live long in this school. Yes.
And he went right to all the stuff you said. Oh, there's kids that we've had kids in the school before with type one diabetes. They're fine. Everybody's fine. Like, doing that, like, don't worry.
Be happy. Like, you know, it's Yeah. And and I just I fought back and I fought back and I tried so hard. And I finally got them to accept her five zero four plan, and we worked on it together. But the one thing that they wouldn't do at the time, I asked for, like, an aid to be with her on the playground.
Mhmm. That was pretty much it. I was like, I'd like somebody, like, before recess to just sort of collect her at the because she's gonna go to the nurse's office before recess. She's gonna get her blood sugar checked. I for everybody using a CGM, you try to imagine, like, she goes to the office.
They check her blood sugar.
Know. It's hard for me to
imagine. Yeah. Yeah. Yeah. To see if it's gonna be okay.
And, and then I just wanted someone to go out there with her, hold her bag, and just kinda keep an eye on her. You know? Because she because, you know, she was five. And and they said no. They were adamant about no.
And I'm sorry this is a long story, but
No. It's not. I love listening. This is what I do.
Well Yes. So some months later, I being an listen. I trust humanity as a whole. Like, you know what I mean? Ish.
But
But you're skeptical.
Well, listen. I I'm not losing a kid because I trusted you. Okay? Right. Right.
So my phone was littered with timers, and my timers were set to bring myself back to reality a few minutes before she was going to have something done to her at school. Because part of my five zero four plan was you check her blood sugar, then you call me and tell me what her blood sugar is, and then we decide how to move forward together, and then we do the thing. And I did that all day long every day. So one day, my alarm goes off. I'm vacuuming because I I don't know if you know this, Jackie.
I was a stay at home dad. And ahead of my time, by the way, back before they were doing it, That's neither here nor there. And I'm vacuuming. My alarm goes off. And so I just I I write myself.
I'm like, oh, someone's gonna call in a minute. Then they didn't call. And I thought, well, I'll be a reasonable person. You know what I mean? I'll wait another couple minutes.
I'll wait a few more minutes. I'm like, It's enough. I call the school. The school has to put me through to the nurse's office. The phone rings.
Someone picks it up. The voice says, nurse's office. And I said, hey. I'm calling to see about and I didn't even get it all out of my mouth because I don't know if you can like, I have a fairly recognizable voice. And the person on the other end yells, oh, damn, Arden.
And then they hang up the phone.
Oh, no.
And that was it. So now I'm just standing in my house going, oh, damn Arden. Like, what's that mean? What? Yeah.
Yeah. And and but, okay, there's I I recognize the nurse's voice. She's now thinking about Arden. I will stand here quietly and wait for my phone call. So I do finally get that phone call back, and all that happened was that another child in the school had a medical emergency right before they were supposed to grab Arden for her blood sugar check.
And so no one did. And now imagine what that means back then is that some someone was supposed to go to Arden's room, collect her, take her to the nurse's office because she was, again, five, and then check check her blood sugar, then call me, do the thing, push her out onto the playground by herself, like, through a door Right. And blah blah blah. Except right before that, a kid literally needed to be put on a heart monitor, and everybody just got super focused on something.
And they forgot her?
Well, not only did they forget her, but ask yourself, six, eight months into a school year, how does her teacher not know Right. Why why is no one coming for Arden? So look at all and by the way, the teacher's a lovely person. I just saw her at the Costco the other day. Okay?
Right. Yeah.
And But the system failed. Yes. Right. The protocols failed.
And a lovely person who cared about Arden, enough to ask about her seventeen years later in a Costco. Okay? Mhmm. But in that moment, even though they had done it day after day, week after week, month after month, no one came to get Arden. Nothing fired anybody's brain.
They sent her out on the playground. That nurse went and collected Arden, I was told, off of the top of the monkey bars with a blood sugar of 50.
Oh my gosh. Okay. That's so scary.
Yeah. So they they get her back inside. They fix her up, send her on her way, all that stuff. And then they call and explain it to me. Now where most people I don't know what most people would do.
I put myself in my car. I drove to the high school.
I would yeah.
Mhmm. Where the superintendent's office was, and I sat outside of the superintendent's office. I said to the secretary, I need to speak with the superintendent. They said, you don't have an appointment. I said, don't care.
I'll I'll wait. Okay? So I waited for a while. They tried to shoot me away a couple of times. Eventually, I made my way inside.
And there we are having this conversation. It's the same one we've been having before. We don't understand why Arden can't take care of herself.
She's five.
Yeah. Well, I said that.
And educators do not understand
child development? I said,
am I asking that question?
I said, well, I barely understand how to take care of her, and she's five. Five. Right. Okay? Right.
So I went over and over again, and I said, look. I tried being nice. I tried to explain to you what could happen. I asked, you know, kindly. I didn't put a tiger in here or a Ferris wheel or anything like that.
I asked for somebody to be with her in this one situation. You said no. And today, my daughter with a 50 blood sugar is crawling around on the top of a monkey bar. And I said, I wanna be completely clear. If you kill my daughter, I will spend the rest of my undoubtedly very sad life trying to pay you back for that.
And I will do it through attorneys and any other thing I can think of until my name's on the front of that goddamn high school. Okay?
Right.
And I said, and and for no reason other than I will have nothing to do except be angry at you and sad and miss my daughter. Or could you just have a low level person stand and stare at her for twenty minutes once in a while? Like, I'm not asking for the person to have six PhDs. Right? Right?
Right.
Well, we can't afford that. We can't afford that. We can't afford that. I said, I swear to you.
That's not a law.
You better I'm
not an attorney.
Uh-huh. I said, you better reassess your thinking, I said, because you definitely won't be able to afford it after you hurt her. And that was it, and I left. And they called me four hours later, and Arden had an aide. And that was it.
Good for you. Yeah. Good for me. None of that shoulda happened.
And none of it should've it shouldn't have happened. Right? And that is something that is so terrible that still happens today.
That's my point.
Until that they know that the family knows that a law has been violated, a child's life has been put at risk. It's like in some schools, I'm not saying all, but in in many, you have to push them and push them to the limit to get them to give you what is reasonable because so much gaslighting goes on. Right? You are the difficult dad. You are fighting.
You are making this a problem. We've got this. We're educators. And you leave those meetings going, maybe I am. Maybe maybe I am crazy.
Maybe I am a problem. Maybe I am asking for too much. Yeah. And and you just start doubting yourself, and then you have these moments where your child is 50 on a playground, and you're like, no. I wasn't.
It was you guys. It wasn't me. You know?
Well, it's diabetes, but Yes. Let's all just, you know, maybe try. Like, why are we why are we throwing it up to god all the time? It'll be we've had other people through. It'll be fine.
By the way, I learned my lesson on that when I I found those other people who'd been through the school. And they're lovely people, and I like each and every one of them. But most of their kids are walking around that school with a 250 blood sugar so that nobody will get low. And everybody's happy with that because they go, oh, you know, if we keep their blood sugar higher like that, then they don't get low at school. Well, awesome.
And then they don't have to deal with it. Right? But then what's the long term effects of having your blood sugar that high all the time just because you're afraid to push the adults to get some training and do what's right.
Why am I educating my daughter so that twenty years from now, thirty years from now, she can suffer serious medical conditions? Like, why don't we all just go sit on a beach and stare at the the sunset until it's over? Like, I mean, like, what what what's the point of all this? We're gonna educate her, make her a, yeah, make her a thoughtful part of society. And then when she's 30, she's gonna need laser treatment in her eyes because, like, what what kind of and then you say that, and they go, that's not gonna happen.
I'm like, who are you? What do you got? You got a crystal ball over there? So oh, Jackie, I can tell this conversation is gonna make me upset, but go ahead. Go ahead.
I know. Yeah. You know, I'm so passionate as well about what I do, and I face situations daily that just infuriate me, make me angry from the standpoint of I was a classroom teacher.
Mhmm.
And and I wanna share this story because every time I see this student, I feel like I need to apologize to her. I had a type one diabetic in my fifth grade class. And this was years ago, probably fifteen years ago now. And I didn't get any training. It was like, and she was a fifth grader.
“I had no training”24:17
Mhmm.
And I was like, nope. She's good. She knows how to handle it. If she starts going low, she'll ask you for a juice. And now that I have a type one diabetic, I am appalled at how that was handled for me.
Mhmm. Here's her five zero four plan. Just read it. And I remember saying to this student, there are times I'm like, you don't look okay. Do you need to check your blood sugar?
Do you need like, why am I asking her? Right? I didn't know that it's maybe not the best to ask someone when they're going low. You should just know how to treat it and how to handle it. I had zero training.
And I think what you said with the word crystal ball, I hear that. I've had administrators say that to me, excuse me, in a meeting. Say, well, we can't answer that what if we don't have a crystal ball. And I think parents need to do that. I think parents need to sit down before their five zero four meeting and, like, listen to your podcast, talk to other diabetic parents, and think about these what if scenarios, and then have an answer for it.
The crystal ball problem25:22
And be able to go into that five zero four meeting and say, I know you can't answer what if, but here is what history tells me. Here is what experiences tell me. Here is what I know. We are going to have a moment where that child is gonna be on the playground and has a 50 blood sugar. We know that is going to happen.
How are we going to be prepared to deal with that? Who has the training? What supports are in place? And how are we gonna get in get it in writing so it follows this child throughout their school career? So I think it's it's really those pointed questions.
And I think it all comes down to trust, and it it connects with so many other fields in our life. Right? We trust our doctors. We trust our law law enforcement. We trust our educators.
And I think when it comes we just naturally trust. And when you have a child that has any kind of disability, I think that parents learn the hard way that that trust is false and that you need to go in prepared and educated and not trusting that other people know what's best for your child. You need to be engaged. You need to be the one that knows what's best for your child. So
Trust, and why it isn’t enough26:38
Yes. My god. Yeah. Jackie, you and I are are are separated at birth. Listen.
I'm I'm it's diabetes. It's not if it's gonna happen. It's when
it's gonna happen.
Yeah. We're not Mhmm. We're not and we're not prepping to stop things from happening. We're prepping to respond when they do. This is this is a very important little nuance around the whole thing.
They all think that we're setting up guardrails to stop anything from ever going wrong. That's not the case. I don't I don't want the diabetes. It goes wrong every time. Something's constantly going wrong.
Okay? So
Right. Like
But on those moments when they go wrong and they lead to dire situations, how do we either get in front of it or rectify it quickly without a problem? Have you heard the have you heard the episode of the podcast where the school nurse gave gave the kid, like, two hundred units of insulin?
I have. Yeah. Yes.
That that, I'll use a line from an old, Julia Roberts movie. Did it did it did it shrink your testicles to the size of raisins when you heard it? Does does anyone know that? What's that movie with the Julia Roberts? She's a famous American in England.
She meets Hugh Grant.
Naughty Hill.
Nah. Thank you. Yeah. There's a great line in that where the guy says, I'm gonna tell you a story, though. Shrink your butt.
To to sign and Yeah. Yeah. Yeah. Yeah. It's it's unthinkable except there it was happening.
And it's not, by the way, and it's not because I'm gonna tell you. It's not because the person didn't care. It's not because they weren't trained. It's because sometimes things happen. Right?
Yeah.
And sometimes things happen that maybe it's it it could be the school nurse. It could be stress. It could be a testing scenario. It could be PE. It could be that somebody brought treats for a birthday party, and, you know, my kid decided I'm just gonna have that cookie and didn't know how to dose for it.
I mean, there's so many factors that potentially these five zero four teams don't understand.
Mhmm.
And and our need to be diligent and proactive and on top of it. One of my favorite strategies when you were talking about having your five zero four plan and they wanted to do it the first day of school, and I'll just share this. I find out when teachers are contracted back to be in the building, and I email the, either the principal or the special ed coordinator or the five zero four coordinator, you know, whoever is your go to person, and say, hey. I know teachers are back on contract. Let's have this 05/2004 meeting before school starts.
Get the meeting before school starts29:13
Jackie, you're what they call a pain in the ass, but in a good way. That's awesome. I like that. Yeah. Yeah.
Yeah. Such pain.
I know.
That's awesome. I love that.
And I'm just it's such a great strategy because then you're not putting a 504 plan into place in May or June where people are gonna forget about it.
Mhmm.
And you're meeting with your five zero four teacher, you know, your five zero four team in typically in August. Right? Depends on if, like, you're East Coast. Sometimes that's, like, after Labor Day, so sometimes it's, like, September. Right?
And so you're meeting with them before that and you're you're laying it out and you're giving them time to digest it all, to look over any resources you give them. But here's the other thing that people forget. The 504 is the first step. I can tell you how many five zero four plans and IEP is the teachers get, and they spend three seconds looking at it, and then it goes in a folder in their desk.
Yeah. Because they don't think anything's bad is gonna happen because it's human nature to believe everything's gonna be okay. But Right. Right. Right.
Right. Yeah. What they need is to be woken up at 02:45AM by something going and their wife yelling, hey. Is Arden okay? I don't know.
Hurry up. I think she's gonna die. Arden. Oh, Arden's having a seizure. Jeez.
Okay. That'll get you right. Then somebody will hand you the 504, except they're not gonna have that experience. They're not gonna ever have that experience. Okay?
So And
I think that's why, like, your podcast is so important. Like, we have to share these experiences. And when you go to your five zero four meeting, you have to tell your story. Right? Don't let them bums rush you and say, oh, we have thirty minutes for this meeting.
Tell your stories. Tell them about how, hey. This last month, my kiddo or this last week, my kiddo's been having Lowe's every night at 2AM. I'm exhausted. My kid's exhausted.
Let's talk about how that's gonna impact them at the school day.
Yeah. Also, they're gonna be late, and I don't wanna see you market. When
Oh my gosh. The truancy fights I've had over diabetes.
Oh my god.
Like, not even. That will make me so angry.
I I just Because Yeah. Yeah. Yeah. Because
it
I
have to miss school. Mhmm. Not just because of doctor's appointments, because of high blood sugar, because of low blood sugar, because of feeling terrible. And I'm like, you better not send truancy after me because we're gonna we're gonna have a problem.
Yeah. Here's the thing. I I wanna be kind, but it's likely I won't be. I I just sat the other day in my in my kitchen where I make food and and people congregate. And there was one of, like, Arden's new friend Arden's, like, lifelong friends who's a new teacher.
She's graduated from college. She's gone through student teaching. She got a job. Right. And in a couple of weeks, someone's gonna walk in a room and go, hey, missus and she's gonna be thinking, oh my god.
What am I doing? Because she's 22 years old. Okay? Right. And and she six months ago, if you would've I I would tell you she's a lovely person.
I would tell you she's thoughtful. I would tell you she's kind. I would tell you all kinds of lovely things about her. I wouldn't tell you I'd put her in charge of my eight year old's diabetes. But now all of a sudden, she's a teacher, and we go,
oh she is.
Yeah. And so she's in charge, and we all just go, well, she'll be okay. No. No. She's the same person who sat in my kitchen six months ago and didn't know the answer to a very simple life question.
And and and if you all think about yourselves and be honest for a second, most of us, I'm including myself and everyone else that I've ever met in my life almost, are not prepared for something like this. Okay? Like, gosh. No. Yeah.
We are not prepared. Like, becoming I listen. I know 50 cops. They're great people. They do an incredibly hard job.
They're also nudniks, and and some of them have weird, things they like to do with their free time. And, you know, like, hobbies where you're like, really? That's your hobby? That's insane. They have good relationships and bad relationships, and then some of them get divorced, and some of them don't.
Some of them have children, and some have never had a kid before. But when when push comes to shove and something goes wrong and a guy rolls up in that car, I think, oh, finally, the guy's here. The lady's here. The one who knows what to do. They just showed up.
Yeah. I know them on the other side of their life. You you all know teachers and nurses and doctors and administrators and people like this. And Jackie's point is not lost on me earlier in the conversation. I I've been saying this on this podcast for years.
There are some professions that we are raised to just kinda bow down to. And Mhmm. I don't think that's a good idea, first of all, but I think it's a really bad idea when it comes to putting my kids' life in their hands. That's why I make them train the school bus driver. Right.
But, like, but they when when I was like, I I want the bus driver to know how to use glucagon and to recognize signs and symptoms and to get a training. And they were like, well, she's only on the bus for twenty minutes. And I said, seems like a long twenty minutes if she has a seizure on the bus, don't you think?
And Yeah. And that's the kind of questions you have to ask and point out. Absolutely.
Right. Yeah. You have to keep explaining to them, like, the what could but by the here's the other problem. You point out the what could go wrong, but at the same time, you don't want people are I'm not even gonna use any, like, words. I'm just gonna say people, and then I'm gonna move on to my next thought.
Okay? You start telling people all the things that could possibly go wrong with you, and suddenly, you're an albatross around their neck. And they and they see you as broken or problematic or making their day harder or they walk out of that room thinking I don't get paid enough to go to this. Like like that kind like, yeah. People are terrible inside.
Inside in the middle. Okay? Not everybody can be a podcaster. My life is light and airy. You understand?
I can I can afford to work out here on the fringes of what wouldn't it be nice? But it's because I
life is not life, Neri, because, you know, it is personally outside of what I do. But with what I do in the trenches, it it really kinda makes you a little jaded.
I'm not overstating this. Right?
Trust people. Yeah. Right.
I'm I'm not overstating this.
Mhmm.
Yeah. You get in those meetings, and you're like, I am sitting with three idiots. Or I or
I would never say that.
Jackie, no one said you would say that. I was talking for you in a podcast scenario. Right. Okay. Where you sat across I listen.
I'll put it on me. I've sat in a room and thought, oh, that person seems like they've had a head injury. Or I've looked across the room and I thought, Why are they not understanding what I'm saying? Or this nurse has an ego the size of, you know, Manhattan. And and she thinks she knows everything.
I had one lady tell me one time, she goes I said, well, listen. Here's how we have it set up. Because I don't know if you know this, Jackie, and I'm gonna take credit for this. I am the originator of the idea of texting diabetes. That's how old I am.
When you hear other people talking about how texting is, like, the four like, the best way to manage your kid from distance and blah blah blah, that's Scotty Right. From twelve years ago.
Okay.
Okay?
Okay.
I did that. You're all welcome. That's awesome. And I'm the I'm the I listen. I'm a say it one more time.
I'm the one who stood up and said that texting is, like, literally the diabetes tool no one is using. They're using it now. But when I said it, ain't nobody was doing it. Okay? And so I I go into Arden's five zero four meeting at when she moves from the middle school to the high school.
High school.
Yep. And I say, listen. Lucky for you guys, this is Arden. Her a one c is in the high fives. She is fantastic, knows what she's doing.
We have a system like no else. It's actually used around the country by other people. You'd you're never gonna see her. I'm gonna use the nurse's office as a place to source some supplies because every once in a while, she's gonna have to swap a CGM or a pump at school or something like that. And by the way, if that's even gonna happen so infrequently, we're not even gonna leave insulin with you.
If that happens, I'll run insulin over to the house to the school because I live that close. Okay? And the nurse, offended, sits up straight in the chair. She goes, no. No.
No. I'm gonna see Arden every day. And I looked over at Arden, and Arden was like, what is going on? And She wants to see her every day. Yeah.
She I I said, I'm sorry. She goes, well, I I like to have a good tight relationship with all my type ones, so I know what's going on with them. We'll sit and chat. She don't know Arden. Arden ain't looking to sit and chat with her.
Okay? I don't know if you can tell from my personality. I also wasn't looking to sit and chat with her. So and so, like, we're like I said, no. And she said, well, that's gonna be a problem for me.
I said, well, that'll be a problem for you. It isn't gonna be a problem for me. And that's not what we're doing. I was like, you are the nurse. God bless you.
I'm glad you're here. I want you to hear all this. If my daughter should have an experience that is unforeseen, Please react as if she was anyone else. But in all those other moments, leave her alone. I don't want her down here sitting in the sick room with people.
I don't want my daughter's high school experience to be that she was best friends with the nurse. Okay? Right. Like like and and even though I hear what you're saying, and I by the way, as you're hearing me say this, you're like, that's kinda you're I know what you're all saying. It is lovely.
But, like, it wasn't necessary. But the point is is that when I said it, you know, I didn't say it to her the first time that way. I was like, oh, no. Don't worry. We have a a she'll probably never even see you.
It'll be great. Blah blah blah. She was offended. And then she got her spine up, and then she went on the offensive to defend the way she does things. She started, like I don't even know how to describe it exactly.
It's almost as if she had a little thiefdom, and I was telling people it wasn't necessary. Does that make sense?
Yeah. It does. It's almost like you know, one of my favorite I'm gonna connect to this. Sorry. My thoughts are scattered.
But one of my favorite advocacy books to read is five dysfunctions of a team. Right? And it talks about different personalities within the team. And it's almost like she had her own agenda, her own personality that needed to come out, and she wasn't considering Arden, and and she wasn't considering the parent input. Does that make sense?
Oh, a 100%. She was like, no. No. No. I've been doing this forever.
I know what I'm doing. This is what we're gonna do. And by the way
And you and I have really bold personalities. Now imagine being a person that doesn't have that kind of personality.
Why I'm having this conversation because what I've learned making this podcast is that most people aren't me. Most people most people just walk out and they say, well, I you know, she made a good point. Like, it'll be nice. You'll see her every day. But yeah.
Yeah. I don't know how you all end up getting pushed around like that, but that ain't happening to me. And so Yeah. And and when I don't know what I'm doing, I will also go, oh, okay. Well, that sounds great.
Like, that's I'm I'm glad to have thought of that you thought of that. Like, I'm not just out there, like, running forward with my idea and not listening to other people.
Right.
You you know?
Well and and I think what happens to those people that like, when you said, oh, hey. I'm not out here getting pushed around. I think that it goes back to what we're talking about. Those people have, like, an inherent trust in their nurses and their school staff, number one. Number two, they don't know what to say.
I hear that in my office all the time
Mhmm.
That people will say to me, Jackie, you have all the words. You have all the language. You know? And for me, I've always kind of been able to think on my feet and and be able to say what's appropriate. Yeah.
But at the same time, you know, I have all of that jargon training from either education or diabetes or from advocacy, or from the ADA. So I know the things to say. And so people get into those moments where somebody is coming across authoritative, professional, and it's like they freeze. They don't know what to say. Mhmm.
And then the emotion comes out, and then they get frustrated. And I see this time and time again in every meeting. And and then you're trying to get empathy from that person. Like, that's our default. Like, if they could just know how hard this is for me, they will be empathetic.
And and a hard truth that I've learned is that our world lacks a lot of empathy. And that you may be sitting in that chair crying, and you may be sharing your story about your daughter, your son, and the seizures and the struggles you're having. And that person is just likely probably sitting across from you going, like, are you done yet?
Yeah. Wow.
And and Yeah. Yeah. And that's sad. That that's really sad that we live in that world that and and I often have to point out when I see the deadpan look on people's faces in the meetings and and this parent is pouring their soul out. I have to remind people, and I'll call them out on it.
I'll be like, and do we have any empathy? What can anybody relate to this? Because it seems like this team is just kind of waiting for her to finish.
Yeah. Yeah. This is uncomfortable.
Just kinda goes quiet.
Well, that's beautiful. I this is uncomfortable. I don't know what to do. I have no context for this. I'm gonna sit.
I'll make my I'll make my best funeral face, and then we'll get out of here. And then we're gonna go in the coffee room and talk about what a lunatic those people are. Oh my god. They're out of their minds. You see
yeah. I'm sure everybody talks about how crazy I am. Like, I am I am Yeah. Sure it happens.
Because they lack they lack context.
Right.
Right. Empathy and the ability to imagine the thing that isn't their thing. And they don't know that the kid walking around with a two fifty blood sugar by the way, let's build a bigger picture. You put a kid with a bit a two fifty blood sugar in a school and you let him walk around, you go, well, at least they're not having a seizure. Well, now you've traded today's problem for tomorrow's problem.
That's the first thing. Well You know?
And the other thing I'm sorry to interrupt. Don't. The other thing is that when your blood sugar is at two fifty, let's talk about how that changes your brain.
Yeah. You can't learn.
Affects your learning. Yes. Let's talk about how that affects your test scores. Let's you know, I have that's one of my things in our five zero four plan is to really monitor that blood sugar, and we're not taking tests if it's above a certain number. We're just not doing it.
Can I can I tell you? I think back sometimes on my life growing up in school and how bad I was at school and then learning as an adult that my iron was low. And I think, I wonder if my iron was low when I was a kid. Like, I was always tired for no reason. And Mhmm.
And I was always heavier for no reason. And now, you know, as a 50 how old was I? Like, 51, 52 year old a few years ago shooting a GLP into me and watching my brain wake up and my body go back to the way I imagined it was supposed to be my whole life. I was like, what what all was I battling through that I didn't know? And Right.
And take that aside, but lay diabetes in that in that sphere and talk about that like that. High blood sugars, swinging blood sugars, low blood sugars, worrying about your blood sugar, worrying that somebody's gonna find out you have diabetes, not wanting people to see your thing. I could sit here, probably rattle off a 100 things that that kid's worried about walking around, half of them conscious, half of them subconscious. Yes. And then say and then they're like, wow.
Look how sad she is. Her kid doesn't have a pancreas that works. I can't wait to go to lunch and Sorry. I'm laughing. Scroll my TikTok.
I see you out there. I see in every don't worry. Every walk of life, there are wonderful people. There are dedicated, thoughtful people doing their best Mhmm. And there are not.
And I don't know how you're supposed to tell the difference. Like Right. Like right? Like, who's the one who's gonna fight for your kid, and who's the one who's gonna go, No one came for Arden. Oopsie.
And, like, that Mhmm. You don't know who's who. Also, by the way, they got lives too, and they got children and health issues and husbands and and floors that creek and all the other things that happen to people. You think they're sitting around thinking about your kid? They ain't thinking about your kid.
Like, I Right. Like, I listen.
Oh, I hear them. They say it in meetings. They say, you know, I have 30 other students I have to worry about.
Yeah. Okay. I've had
that said to me multiple times.
You know what you should do? Think about them because it's your job. Like, it's like when a doctor says, oh, you know, we do better, but we only have fifteen minutes. I'm so sick of that. Oh, I almost cursed.
I'm so sick of that excuse. Like, if that's the if that's the problem, could you offer me a fix instead of a a throw your hands up in there? Go, oh, there's 30 kids in here. Oh, you know what you want me to do? Yeah.
Like, I mean, I mean, here's what I'd like you to do. Don't let my kid pass out. Could you handle that?
Right.
Apparently not is my point. Yes. Okay? Right. Oh, Jackie, you and I turn this microphone off.
You would say terrible things about people. I will enjoy that conversation when we're done recording. Go ahead, Jackie.
I can say that right now because
Go, Jack.
You know? Yeah. I have I have awesome stories, and I have terrible stories. I truly have awesome stories when it comes to my own daughter Mhmm. And the nurses that she works with.
And I am not just saying that because I fear any repercussions. If anybody in our school district knows me, they know that the repercussions are gonna get addressed if there is any because, technically, that's illegal, and I'm not an attorney. So I always have to disclose that. Right? You can't have any kind of retaliation or repercussions.
And our school has done a fantastic job with reading the Pink Panther book and and bringing in parents to talk about their experiences and training their staff and letting sugar pixels in classrooms and following CGMs, and sending you know, making sure that if the nurse is gone for that day, the sub nurse is trained or the the secretary is trained. So I have no personal complaints that way. But other people that I have advocated for, horrific, horrific stories Mhmm. Of and and they have been trained. They have been talked to.
And then, you know, things like, well, we've already had a 504 meeting. I'm sorry if you're not following the 504 plan. We can call a 504 meeting whenever we want. We can we can be a thorn in your side and have a five zero four meeting once a week to make sure you are following this five zero four plan if we need to. You know, we can also file a complaint with the office of civil rights, and then you're being investigated.
So what are your choices here? Are we gonna follow this plan? Am I gonna be a thorn in your side where I'm at this meeting and I'm bringing my advocate and I'm asking you for documentation and I'm asking you to write everything down that you're doing to prove that you're doing it, or am I filing an office of civil rights complaint? Like, I can go there. You know?
That's what I tell people. You know, I go into these meetings, and and I try to be collaborative, and I I try to be friendly and build bridges and be positive. But, you know, my family's joke, there's a moment where I take my glasses off and I put them on the top of my head, and I'm like, alright. And then they know, like, oh, she's had enough.
I thought you were gonna say and try to build bridges and all that bullshit. I thought that's what you're just saying. I I again, I I I'm talking to people whose kids have to go to school with, you know, diabetes or something similar to that. Right? You are the only one that cares.
Okay? Just put that in your head. Don't be sad about it. Don't wanna fix the world. Just say this is true, and we need to move forward.
Because, also, I don't want your kid becoming a poster child for, like, we fought the system. Because trust me, you fight the system in one place, and it just needs to be fought in 10,000 other places. You don't want the talk. It's not gonna it's not your fight. It's your thing to, in my opinion, navigate, negotiate, get through happily.
That's it. Right. So I'm gonna kinda tell you the other side of this whole thing. When I started to realize what was happening like, you know, I I don't wanna go back too far, but you're born and you have a nice feeling about the world. And when you're young, you're like, oh, everybody's everybody's out there trying.
And then you get a little older and you go, that's not what's happening. Everybody cares. Everybody's nice. That's not true too.
Right.
Well, a mean person wouldn't be a a principal. Not true. A bad person wouldn't be a cop. Uh-oh. Not true.
Like, you know, school teachers care about kids. Some of them just want the summer off. And, like, when you and you go through the whole thing, right, you realize, okay. Mixed bag. This is the world.
I gotta get my kid through this world. Like, that's when I became, a ninja about it. I was like, this is what she needs. It's all here. All this stuff's here so I can call a meeting or sue you or whatever I have to do if you don't do it.
But let's be honest. I don't want that. You don't want that.
Here's want that. Right.
Here's the really important things. Let's do these things. You'll never hear from me. And then I would do this thing every year. I would thank them at the next meeting.
Give something back every year50:23
Everything went great last year. I really appreciate it. I'm so glad that we focused on this, this, and this. Those are the only things that matter to me. Made Ardens, like and then I would share her health outcomes.
I'd say you guys would be thrilled to know her a one c has been this. Her stability has been great. Like, make them feel like they're a part of it. By the way, they're not a part of it, Jackie. Just make them feel like a part of it.
Like, okay. We're winning. She's winning. We're all in this together. Blah blah blah blah blah.
You're all married, you know, when your wife's telling you stuff and you're like, I don't I think she's just trying to keep me taking out the trash. That's what she's doing. She just wants wants you to take out the garbage. Okay? Like, so you give them the rah rah.
Everything's going good. And then I say, hey. And you know what? I know how difficult this is. And I looked at the five zero four planning.
And, you know, there's a couple things in here that were for when she was younger. Let's take them out. Let's make it easier for you. I give something back, Jackie, every year. I go in there and I go, here's what I'm giving back.
By the way, what am I giving back? Nothing. It was a thing for when she was four that's never gonna come up again, but it makes them feel like I'm lightening their load. You have to it's like you're buying
have be strategic. Yes. Right. You have to be strategic. And and here's what I see.
Three ways parents get this wrong51:30
I see parents go in two different things. I see parents go in, like, already angry, guns blazing, and they haven't even met anybody.
Not gonna work.
Right?
Yep.
That's not gonna work. I've seen parents go in completely uninformed, completely not ready, and just say, okay. Thanks. I'll take what I can get and go.
Oh, you're gonna get run over. That's like buying a car without understanding what the car cost.
Right.
Yeah.
Exactly. I've seen parents go in just really overwhelmed and really emotional, crying, fearful. I mean, it it's terrible to say, but we have to kinda put this back on the parents. You have to get yourself right.
Yeah.
You have to go in there strategically, objectively. You know, this isn't emotional for them. This is just another meeting. They have 40 in a day. Right?
And and so I think that's what you're doing. All of these years, you've gone in really strategically. You know, a thank you goes a long way. Taking something off somebody's plate goes a long way. You can disagree on certain points, but then also saying to someone, you know what?
You're right about that. I agree with you. Yeah. Goes a long way
Give some
when it comes to advocating for your kid.
Apply self deprecation to this. Like, right, you always like, and I always kinda put myself on the like, I I can't. I'm gonna tell you a couple of my negotiating tactics, Jackie. Okay?
Negotiating tactics52:55
Please do.
Thank you. When an ask when an ask is made, the next person that speaks loses.
Okay.
You have to be very comfortable in the silence. Mhmm. You just make your ask, and you sit there because the next person who speaks loses because it's always to give up. That's it. Mhmm.
So sit and smile and stare and look thoughtful because when they open their mouth, you just got what you wanted. That works when you're buying a car or anything else, by the way. Mhmm. That one to me, big deal. The next thing is is I always put myself in a slightly subservient position in the conversation.
Running it from the lower decks53:38
I I how do I say this? I run things from the lower decks. I let the people think they're in charge, and I work from people like to feel like they're in charge. So let them feel like they're in charge, and then move them in the direction you need to move them in. There's no this is not a contest.
It's It's not a thing you're trying to win or lose. You were trying to get what you need for your kid. And who cares how it happens? Right? Mhmm.
Remember how
As long as you get there, I don't care how you get there as long as you get there.
You remember how Faris Faris Gump's mom got those leg braces?
Oh, yes.
I do. It's me in one of those meetings.
Doing any of that.
You know, don't I'm gonna listen. I you know? But big picture. You know what I'm saying? Like, I I go, oh, I'm you know, it's I didn't understand your job is a very difficult one.
Blah blah blah. Like, you know, I you make people feel important, and then you and then you let them you let them feel important by giving you something. Because that's the other thing is what they give you in that room is free to them. They're not the one who's gonna do what the teacher has to do. Right?
They're the person who gets to bestow it upon you. Let them feel important, like, when your grandmom comes up to give you a check. You know what I mean? Right. And and and you just let her feel it.
Like, oh, I'm giving them a $100. Is that still the number? And, like, you know yeah. Right? I mean, how how much is it?
How much is grandma at the a $100?
I know. Right.
You know, the grocery store, it's $600. Leave with a bag. I I don't know what just happened. So Yeah. But but, like, you know what I mean?
Let them feel important. Let them feel in control. You don't need to feel like you beat them. Let them feel like they beat you as long as what happens at the end is what you need. Who could possibly care less?
And just walk out of that room and smile because you got what you wanted. That's it.
Right. And, you know, I try to approach it from, you know, for me, no just means not yes yet.
Mhmm.
And and we'll get there eventually. But one of my favorite phrases to use in that scenario that you were just talking about is just, hey. Help me understand. Help me understand your perspective on this. Help me understand your reason why you're saying no.
Help me understand why that doesn't work. And if you get those ridiculous answers like, why have 30 other students in my class, you need to know how to be able to answer that, how to respond to that in a way that moves them closer to your understanding. Mhmm.
And no no sarcasm and no, like, under your breath shittiness. Like, do know what I mean? Like, when you ask when when I say to them, oh, you know, it's I think it's I think maybe I didn't do a good job of explaining this. If that's how you're if that's if that's what you're hearing, I have not done a good job of explaining this. Let me let me try again because I know that once I do a good job of explaining this to you, you are going to agree with me because it I'm just I just I'm so sorry.
Like, always self always self deprecating. Always in the background. Do not don't try to hold the power in the room. There are so many people. Do ever go to a retail location and there's a person working there who you know, it there's certainly don't own the place.
They're not a manager, but they fight with you as if they're the one that paid for the building and all the people. And I sometimes while I'm watching that happen, I think, why do you care like this? Mhmm. It's a moment where they're in charge. Like, a lot of people don't get to feel in charge.
And Right. And they love it. They love it, Jackie. They love it.
Oh, it's a power trip. I mean, I can admit that I love. I'm definitely a person that loves to be in charge. Like, you can ask anybody in my personal life. They're like, Jackie will be will put her in charge.
My point is chill organization at all. But my point is everyone feels that way. And so you don't walk into someone's house and start telling them they're wrong.
What to do.
Right. And and what to do. You it's their house. Like, you have to find a way to let them feel in charge, let them feel like they're doing the thing they want to do, but leave with the thing you want. That's it.
Mhmm. It's very listen. Now here's the problem.
Like a great comparison because think about it this way. If, like, you have a diabetic child and you take them to someone's house that doesn't have a diabetic child, that doesn't understand diabetes. Right? Would you go to that friend's house and start yelling at them and bossing them around? Would you start crying at them?
Would you say to them, I trust you. You got this. Whatever you say works works.
Right. No.
If you take that same Like, so if you take that same issue of, hey. This is my five zero four meeting, But now you apply it to whether it's a grandparents house or an aunt's house or a friend's house, and you're going to that person's house and you are dropping your diabetic child off for eight hours a day. How would you handle it? Would you pick one of those three? Would you cry and be difficult?
Would you scream and yell and threaten lawsuits and say that you know the law because, you know, Gemini told it to you? Mhmm. Would you go in and just say, oh, I trust that you did your research on diabetes, so we're good. Whatever you say goes.
Yeah.
Don't You wouldn't do any of those three.
No. No. In their also, when you yell, I'm gonna sue you, people think, no. You're not. Stop it.
Yeah. It's like right.
So they say I've I've yeah. I tell people, don't say that. Don't say I'm gonna sue you because it takes $60,000 to sue a school district. Like, don't do
it. Right. You could just you could just hire a person to teach your kid for the next twelve years in your house if you wanted to, like, with that money. Well and that is the other point, like, I too. It's like, I I did not wanna feel like I was reinventing the wheel.
I mean, listen. There's things that happen that I'm proud of, like but it's little stuff. Like, in my daughter's district now, you can, when you take standardized testing, a teacher will be willing to hold your phone to Yes. Tell you when you have an alert or to communicate with an outside person for you about your diabetes. So when Arden takes standardized testing, the proctor holds her phone.
And when the when the test started, they would text me and say, hey. The test has begun. And I would say, I will track her blood sugar and let you know if she needs anything. And that way Arden didn't have to think about it. And then I could contact her and say something like, you know, just hand her a juice box and tell her to drink it or or have her bolus point seven five.
Yes. You don't have to stop the test for this. Or Right. There's a problem. Pause the test.
Something like and by the way, the number of times we actually did it were minimal, but it was set up like that. And prior to that, you could not have that phone in that room no matter what. I changed that. Like, it was hard.
And a lot of parents are battling that right now across the nation. Yeah. It it really is a big deal because we're turning into the you know, the schools are really kind of adopting, and states are making laws. No cell phones in the classroom.
Oh, it's gonna be a problem for people with diabetes moving forward. Like, it's gonna be a lot of those new new fights.
I think it's a I personally think it's a violation of section five zero four. Like, I think if you have to have your phone to sustain your life, it that overrules what your state law is, in my opinion.
But you know what they say next? What about what do we tell the other kids?
Mhmm. You
know what I told them?
Oh, yeah. I've heard that too. I'm not here to talk about other kids. I'm here to talk about my child that has a disability.
Oh, is that what you said? Like, see, you're a lovely person. When they said it to me, I said, well, tell them if they wanna get diabetes and spend their life battling with it. They can have a phone in the class too. Or you could tell them to shut the hell up.
I don't know how you're gonna handle it exactly, but that's what I would do. Good luck. So try to make don't try to make your problems my problems. Okay? Right.
Right. I got my own. Thanks. Yes. Yeah.
You want me in that You you're Jackie. Really? This, like,
texting, though. Like, I think if there's a takeaway that parents get from this conversation, is this like that like, you said that, like, that power of texting, especially with your older children. Right? Like, that power of texting.
Well It's episode four of my podcast that has that has nearly 2,000 episodes in it because Yeah. Early on also, I'm talking about texting like it's some magical thing. Okay? But know. Right.
But But back then, back when I was a kid and so, like, you have to remember that the first iPhone didn't do anything.
Yeah.
We I I'll I'll tell people this all the time. When I got my first iPhone, I was super excited to put my contact list somewhere digitally. That was it. That was that's what I thought was gonna be the huge takeaway for my iPhone. Okay?
Mhmm.
And and so as they add, you don't if you don't think of your phone this way, the apps are really the phone. The phone really doesn't do anything. Right? So Right. People started to text.
I know this sounds weird, but, like, it wasn't that common. And when I was trying to get over my fear of Arden taking care of herself, I used texting to break my own fear. So I'll give it to you in twenty seconds. I had trouble letting Arden go to other people's houses, and school was really difficult. And then one day, it was summertime, and she was upstairs.
And I looked at something. I think we finally had a CGM. And I thought Arden needed to do something, right, or to test. Maybe there was before CGMs. And so I texted her, and I was like, hey.
Test your blood sugar or look at your CGM, whatever it was. And then she told me the number, and I said, I need you to bolus, like, point four. And then I thought, well, she's only upstairs. Like, this is, like and then she did it. And I was like, oh.
And then we started doing that more often. Like, I was like, I don't wanna walk upstairs. I'll text her to, like, do this thing.
Mhmm.
And then we built this rapport. And then one day, I was like, why can't I just do this when she's at a friend's house? Like, this works here. Like, what's the limiting thing here? Because why do I think it's okay when she's upstairs?
I don't think it's okay when she's across the street. And then I was like, oh, it's this fear I have that if something goes wrong, I'll be there to save it. Mhmm. And I thought, well, she's at someone else's house. They know the vibe.
Like, no. And then I did that, and then I then it hit me. I was like, oh my god. I could do this at school. And right and right and it takes out the gaps.
Like, because the worst thing about the diabetes is, oh, I feel low. Walk to the like
Oh, I know. That's one of my nightmare stories where I've had teachers that say, you know, in in other districts that that say, oh, I'm sorry that you're at 60, but we you have to finish the test. Mhmm. Or, oh, you can get up and go to the nurse. Just go.
Like, no. They need someone to walk with them.
Like And then even at that, now this other poor kid is so now I'm missing the lesson, and this other kid's missing the lesson. This kid's not upset about it because they're like, oh my god. I'll go. I'd love to get out of here. Yeah.
Like, you're not in class. Yeah. Also, now my kid's life is in the hand in the hands of Becky with the good hair. Like like and trust me. If your kid falls over in the hallway, Becky's gonna go, oh.
Oh. I should probably go tell somebody. Maybe. Yeah. Who knows?
God God I've
sat in a meeting where, you know, they've said, oh, well, I think that when they're going down to the nurse's office to get their blood sugar checked, they're they're just dilly dallying. So I just don't know if we should do that anymore. You're taking a really long time to get I'm like, alright. Okay. And I do.
And I you can ask my husband. Like, I do go home, and I'm like, you know, the the professionalism does drop. And I'm like, I am going you're not gonna believe what I heard today. You know?
Well, my my point is there is like, hey, Arden. You're low. Drink a juice. You don't leave the room. Right?
Like and or and or you need to give yourself insulin. Do insulin. You don't need to leave the room. Like and and so you don't so you don't know this story, but in second grade was the second grade's the last time Arden went to the nurse. Right.
Because I realized between second and third grade, we had this this happenstance y thing happen where her second grade teacher moved up with her whole class. I don't know if that happened. Yeah. Mhmm. Yep.
So, very Arden was terrible at math. Very good at everything else. Really bad at math. It was confounding. But I was bad at math as a kid, so everybody was just like, oh, maybe it's, like, you know, wiring.
And, then third grade starts, and the teacher calls me one day, and she's like, hey, Eureka. Do you know that we were sending Arden to the nurse every day two minutes into the math lesson? She was missing the math lesson every day, and no one noticed. Time. Right.
Because the she 'd start the lesson, and she said and then the like, the timer would go off, and Arden would just get up and leave and go get her blood sugar checked and get, you know, adjusted or whatever and then come back. And then the lesson was over, and Arden would sit down and just try to do the work. And so it took it took a couple of years to, like, get that straight for her. She's also very good good at math now. But imagine if if the teacher doesn't move up, we just think for the rest of Arden's life, she's bad at math.
Bad at math.
Yeah. And and so leaving that room is a detriment. And and do it if you have to. I'm not saying stand there and bleed to death or anything like that. But, like, every day at, you know, at ten and at before lunch and after recess and before the bus, that's four times a day they're not in class.
Mhmm. It's either important or it's not. That was my argument. It's either important that she learns this or it isn't. Tell me which it is.
Right. And this is why she needs to have this phone.
Yeah.
You know, I think that when you speak to that fear and that control I I had a couple of thoughts while I was listening to you that reminded me of my own daughter. So we've only been diagnosed for almost three years now. And so she is gonna be a freshman in high school. And we went through our initial in middle school. Right?
Like, diagnosis and and learning all this in middle school. And I had a lot of that fear and a lot of that control of, no. I want you going to the nurse. No. You have to leave.
No. And, you know, she got burnt out on that real quick as a middle schooler. And in eighth grade, it was really, mom, I'm tired of going to the nurse. I'm tired. I'm missing class.
I'm tired of getting up. I can handle this in class. Yeah. You know? And it took her and I having that conversation to say, okay.
Take a deep breath, Jaxi. She can handle this in class. She can just like you were talking about, but you are doing that in second grade, and here I am holding tight strings on an eighth grader because of that fear, because of that control. And I think we also get into the position of parents of diabetics and really parents of any disability where that fear kinda takes over. Right?
And that control kinda takes over, and we're always running up to the school, and we always wanna be involved. And sometimes that has the opposite effect. Sometimes you really need to say, okay. You've got this. I'm gonna text you.
I'm just gonna give you gentle reminders. You got it. You know?
Yeah. No. We did that for a long time. But but but you said, you know, you were like, oh, I I'm doing it at this age. You did it at second grade.
Like, I just did it at second grade because I don't trust people. That's why. And and I'm not and I'm not coy about it. And and I thought it was not that I don't I trust people. I'm not like I don't walk around the world looking at everybody going, oh, they're coming.
Like, you know what mean? Like, I don't mean that. I just mean, like here's what I mean, Jackie. If you put me, your daughter, and my daughter in a rowboat And Right. Tell me that only two people can live in this boat.
It's gonna sink if all three of you stay in it. I will punch your daughter straight in the face and throw her in the water. I won't even will
probably do the same to your daughter.
Goddamn right you would, Jackie. Yes. You would. You a 100 you'd say, honey, grab her feet. This Arden kid's going in.
Okay? And, like She's going in. Yeah. And I want all of you to hear this. I make this podcast for you, but it also helps my kid.
So, you know and if it came down to I make the podcast and it helps her or it helps you, I'd pick her. And so would you.
Every time. And every parent, if they say they wouldn't. Liars. I don't believe that.
Yeah. Yeah. Yeah. Yeah. Yeah.
Yeah. Don't trust me. The nicest guy at the baseball field was the biggest you know what I mean? Like, oh, like, out in front of me, he like, oh, I do everything for everybody. Five seconds later, I'm walking across the field.
He's screaming at this kid in the car. Okay. Don't tell me how good you are. I don't care. We're all listen to me.
We're all good when we're not pushed. Okay? And that's that that's the way things work. And I'm happy that society has come along, and that doesn't mean that we're, like, you know, grabbing each other out of our homes and, like, you know, like, stuff like that. I like that.
But still in these little moments, these are very little human moments that are that are dressed up as, oh, there's a teacher. There's a doctor. They care about me. They do. Right until someone says, only two of you can stay in this rowboat.
And then your ass is going right in the water. Okay? And anyone who throws themselves in instead of you has a mental illness. I'm just gonna tell you that right now. Okay?
Because I'm living, Jackie. Alright? Right. Now and I agree. Yeah.
And by the way, if that boat only held one person, then I'd grab your kid and jump in with her. Okay? Right. But my kid's living. You understand?
And so Right. And so what you hear in all these conversations between these these administrators and the teachers, it it's nothing to be mad at them about. Right? Like, I'm at work. My job's hard.
I don't make enough money. I'm tired. My husband cheats on me. My wife has a mental Right. Whatever.
Issue. Right. I got problems at home. My kid limps. I don't know.
Like and now you're in this room telling me this is what you need and I have to do it, but there's no raise that comes with it. I don't get a bump in pay. I don't get a day off. Right. I'm just now I'm just now in charge of making sure that Scott's daughter's okay.
What the hell? I just wanted the week I just wanted the summers off and the weekends. Yeah.
Yeah. And I think that's perspective that you provide.
Goddamn right. And I
think that's honest. It it's true, and it's honest, and it's something that people need to hear. And it's something that they need to keep with them when they're sitting in this meeting and and say, look. I know. I know you've got all these kids.
I know you've got this. Know?
And don't be mad at
I am asking you. Yeah.
Don't be don't listen. Don't be mad at the water for being wet. Okay? Mhmm. Just that's what it is.
And now we have to and I need what I need. And now now I know the water's wet, I'm gonna I'm gonna navigate navigate it it the the right right way, way, and and I'm I'm gonna gonna get this done for us so that when I leave, my kids rowboat is nice and steady and as safe as it can possibly be. And then I'm gonna check. I'm gonna make sure it's happening because no but because trust me. Eight seconds into this five zero four thing, it's all out the window.
Like, the first week goes by, nothing goes wrong. You know what's you know what a teacher said to me one time? It was the nicest compliment and the worst thing that they could have said to me all at the same time. You know, Arden is such little trouble. I forget she has diabetes.
Oh, yeah.
And I'm like, I see the good part of that. And why are you not thinking about it once in a while? Like and then but but that's the reality of it. I am not mad at her. Right?
We don't we're not mad at the sun for shining. Like, this is what it is. Like, you don't spend your time yelling at them or telling them how they've gotta do better or be better or they'd if they had a kid with diabetes, they'd under doesn't matter. Just get what you need and get out. Please keep keep your head down for god's sakes.
Don't be a problem because, by the way, I haven't said this yet, Jackie, but there will be retribution if you cause a problem.
Yes.
Oh, somebody some petty person is gonna shit on your kid and you Right. In any way they can if you cause them a problem. And you're not gonna know which one of them is the one who would do that either, by the way.
And so hard to prove. Retaliation is Yep. So hard to prove. And, you know, to your point about they're bringing all of these, you know, things, whether it's their personal life or, you know, something going on in the classroom or now you're asking you to take care of your child. The other filter that it has to go through is when we think about, like, upper administration.
And and even though, like, ADA and IDEA says, hey, these things don't matter. It does matter because that's the thought process. Meaning, do I have enough staff? Do we have enough funding? Is there enough time?
What about the schedule?
Yeah. So They have real problems too.
All of the thought processes that are going through their mind besides let's get this language in the five zero four plan.
It's one of the reasons you don't ask for a first wheel. Like, you want it to seem you want it to seem manageable. Let's let's just manageable. And for me listen. I I again, I was a stay at home dad.
I wasn't in an office trying to focus on something, but I I'm not I'm not gonna lie to you. I spent a lot of my life with Arden in school monitoring something remotely or being back of the head, back of my brain aware that I'm still involved in this even though she's not here kinda thing. And listen. It wasn't great, but, like, it's what needed to be done because blah blah blah. Hey.
Listen. We're gonna I don't wanna run out of time for you. I feel like we've done a good job of covering this. I need you to tell people what you do, and then I'd like to show you my website and see what you think about
Sure. Absolutely. I've actually been on your website. So
I'll look some more.
Yeah. Yeah. Okay. Yeah. So thank you for this opportunity.
So I am a non attorney special education advocate. I specialize in IEPs and five zero four plans. I can attend IEP meetings. I can attend five zero four meetings. I can look at evaluation results.
I can help you write letters to schools. Because if it isn't in writing, it didn't happen. That's kind of my motto. It can help you find the right language and the words to communicate with your team. And so specifically, I have a grant through a community organization here that allows me to advocate for people that have children in the public schools that have diabetes.
They get two hours of advocacy services for free. Oh. And so I can have a phone call. I can have a Zoom. I've helped people in California and Florida, Midwest, all over that just needed somebody to talk to.
What hiring an advocate looks like1:16:26
Even if it's just not me coming to your meeting, you can we can just talk and vent and kinda do what you and I did today, Scott. You know? Check it. A little bit.
Is two hours enough for somebody to get help?
It is not. No? No. It's I typically need four to six hours. And and, typically, that's really what I need.
Right? Yeah. Just because you spend an hour talking to someone about the diagnosis story and the obstacles that they're facing in the school and learning about their child and getting to know their child and what their plan is. Well and then you, you know, you spend another hour crafting the next steps for them and and how are we gonna handle this in a strategic way like we spoke about. And then you spend an hour in the meeting, and then you spend an hour doing notes because that's a step that many parents are missing.
You wanna recap your meeting and put it in writing in notes and send it to the school. Okay. Because that way it's in your child's file. And then next year, if, say, mistakes happen, you have documentation in writing in the file. I told you about this last year.
Mhmm. And you're still not doing it, and here it is in writing that I told you about it. But that is a separate thing. We could do a whole other podcast on advocacy skills with section five zero four. Right?
Where to find her1:17:47
Well Yeah. Yeah. I so listen. What's your website?
I the name of my business is Inspire Education, but my website is inspire and then thenumber1inspire1learning.com. And I'm also on Facebook, and I'm on Instagram.
Alright, Jackie. It's getting it's getting it's getting thirsty. Don't worry. No. I'm just kidding.
Yeah. Fine. Jack. Fine. Listen.
I I'm gonna tell you something. I don't know you prior to our conversation, but but in the last hour and fifteen minutes, what I've learned is you think about this the way I do, and I got through it easily. So I'm Right. It makes me comfortable telling people. I don't yeah.
I think you know I don't have a lot of people on here to share their businesses. So Right. Right. Right. Yeah.
I I asked you about your contact information because of the conversation we just had. So Right.
Thank you for doing that.
No. Thank you for making sense and being realistic. Well, you're welcome. Because I don't wanna hear from you. My sister's a teacher.
She's so I'm sure she is. I wasn't talking about her. Okay? I was talking about the ones who aren't. I got two sister in laws that are teachers.
Okay? I think if they heard this, they'd be insulted. What am I gonna do? Alright? Like, it's still it was still my experience.
And I
And I go back to that at the beginning of the podcast when I was a teacher. I was teacher for twelve years. I was actually my state's teacher of the year. So I was a good teacher. I know I was.
And I had a that diabetic student, and I think she's in her thirties now, and I had no idea what I was doing. I got a five zero four plan. I had no training. Nobody really talked to me about it. It was just, hey.
She has diabetes. She can kinda take care of herself.
Sometimes you're gonna get Jackie awful. As a teacher.
I'm so sorry.
No. No.
I'm sorry I didn't take care of her.
Yeah. Yeah. Yeah. Jeez. Sometimes you're gonna get Jackie as a teacher, and sometimes you're gonna get the person who's having sex with the gym teacher.
I don't know what to tell you. That happens, Jackie. It happens.
It does.
Yeah. Yeah. Yeah. I'm just saying you don't know who you're getting is all I'm saying. And and empathy look out in the world.
Like, Jackie made such a good point. You're sitting there eve either screaming, yelling, crying, begging, whatever you're doing, and you think the person across from you is connecting the way you're emoting. And all they're probably thinking is, oh, lady, shut up. Like, we gotta get out of here.
When is this done? Yeah. We have till 03:45. Our contract hours are up.
Yeah. Yeah.
So let's move on. Okay. I mean, they've said that to me in meetings. Our contract goes till 03:45. Mhmm.
So we need to hurry it along. Yeah. I'm like, well, then we're gonna have a second meeting.
Yeah. All also, what that means is I'm not listening, and I don't care. I'm taking this meeting because I have to. So Yes. When you say you have to sometimes force people to do what they need to do, I don't know how the world got like this, but here it is.
It is. Yep.
Jackie, would you do you have a browser in front of you? Because I know you're on your phone. It's just
Yeah. No. I am on my computer too because I'm in my office. So let me get my browser. And I have to tell you with my teen daughter, that's what I've been, taking in from your podcast this summer.
Oh. We get in the car. We find different teen episodes, and we listen to it and we talk. And
I'm happy it's helping.
So great. So thank you
for that. Oh, it's a pleasure. So, again, I just had this like, I was I just I explained it at the beginning. I thought, oh, I have a five zero four plan that I researched all those years ago. Hey.
What about the Internet? What about AI? I bet you I could do something better. Juiceboxpodcast.com/504-builder.
Okay. I'm gonna go to that.
When you have it, you tell me.
It was just 504Builder?
It's 504DashBuilder.
Builder. Sorry. I missed the dash.
It's okay.
Okay. Gotcha. Alright. There you go.
So, basically, you pick what, like, band of school they're in, pre k, elementary, middle, high school. Right. You throw in their pronouns. You pick the insulin pump they're on, like, you know, Omnipod five, dash tandem Control IQ, MiniMed, Islet, Twist, all that. Just pick your pump.
Right? So I'm just gonna say Omnipod five, glucose monitoring, Dexcom g seven, but there's six, Libre three, two Eversense, other CGM finger sticks only. You can choose what glucagon you're using, ready to use injectable, nasal, traditional mix. I'll choose nasal. How much Yeah.
I'm doing my daughter right now.
Yep. How much talking a bunch of How much can they do alone? Adult does everything. Checks alone needs help dosing. Well, I chose elementary, so I'm gonna say checks alone needs help dosing.
Does the school have a full time nurse? You answer that question. Is there anything else true? They Do ride the bus, play sports, have hypo and awareness? You get to choose those sorts have a service dog.
Click that. Overnight trips also has celiac. Then you put in their names, their first name, second name, the name of the district, the school year, the case manager, the school nurse, the teacher, that kind of stuff. Right. Scroll down a little bit.
You choose your state. I'm in New Jersey. I choose New Jersey. It gives you a link out to another web page. It's the ADA for New Jersey.
It answers three questions for you. Does New Jersey allow school staff members who are not health care professionals administer insulin? The answer is no. Does New Jersey allow school staff members who are not health care professionals to administer glucagon? Yes.
And does New Jersey allow students to self manage in school? Yes. So the answers to those first three are no. Yes. Yes.
You go back to the thing. You tell it. The answers to that are no. Yes. Yes.
It tells you what it means for you, and then you keep scrolling. Choose your accommodation. I want standard only. I wanna select all. I wanna clear them all.
I wanna expand them all. Now you're gonna be met with, a through it's a lot, but a through v different sections. And you can open up a section a, government documents, and eligibility. There's nine things in there. I'm only gonna read you the first one.
Right? They're all checked as as chosen, but you can uncheck something if you don't want it in your plan. So the first one calls itself a standard idea. This plan is adopted under section five zero four, the Rehabilitation Act of 1973, and the Americans blah blah blah. And then it explains to you why that is in your plan.
District still open with she's doing fine. She doesn't qualify, that kind of stuff. So I Yeah. I leave that checked. But let's say I go down.
I go, okay. Those are all standard, but here's an ask for it. Student's name, which will get put in, parents will not be required to provide, arrange, or pay for diabetes care at school or to be present or on call as a condition attending or participating. Like, say you don't want that in the plan. First of
all because schools rely heavily on calling parents. It's a little dirty secret.
Right. So say you don't want that in the plan. Right? You uncheck it. Then when you get then you go through the rest of it, train staff and coverage, and then you just go through Right.
Check, check, check, uncheck, whatever you wanna do. And at the end, it just gives you the plan. You can copy copy it, download it, print it as a PDF, edit it if you want. It'll fill in your kid's information if you put it in up top. Now if you continue to scroll, there's a substitute teacher sheet to, like, give you just the Right.
Just the the basics. Scroll a little further, what what they'll say and what to say back. So it gives you a bunch of things you might hear. She's doing academically. She doesn't really need a five zero four.
Click on that. Under the ADA amendment act, eligibility rests on the substantial limitation of major none of this is from me. This is just aggregated from the Internet. Okay?
Right.
Yeah. And then before you walk in, there's things that gives you to, like, kinda prep before you go in there, lead with curiosity, separate needs from wants, hand them the training, like, that kind of stuff. Sentences that should make you sit up. Right? Said kindly, usually by someone who means well.
Each one describes something federal guidance says at and says a school can't do. Can you come in and give the insulin? A school may not require you to provide that care yourself. Free appropriate public education means free, including not requiring the parents to supply the service. So there's a bunch of things they might say back to you and how you can respond to them.
Mhmm. Then you can, it has checklist of things you might wanna bring to a meeting, so you can go through that. What if they say no? Go in order. Skipping wrongs can cause credibility.
When they strike an item, what do you do? So you choose an item that can get struck from the list. Sensor failure, signal loss, device errors are expected and routine. They wanted that struck from the thing. It gives you the item that they wanted struck, what you can say in the room in return to and then a follow-up email to combat that idea.
And then it shows you where all this came from. Basically, the receipts of how the website was built. That's it.
Mhmm. Is it This is an awesome resource. I mean, it's amazing.
Yeah. Right.
And I think this will help so many parents because it goes back to what we were talking about. You know, first of all, I don't write five zero four plans. That's not what I do. Mhmm. And a lot of parents think that that's the job.
Like, oh, you write the IEP. You write the five zero four plan. No. I don't. I just kind of help strategically negotiate the meeting.
Right?
Yeah.
So this is amazing. And I think it also goes back to, like, telling them what to say. Like, this is what you say when this gets said. Yep. And it gives them that power back and and the words back.
So love this resource. I'll be sure I share this on my stuff too.
Please, if you see something about it that could be easier or better or do you flat out think is wrong, please tell me. I'd love to know. But I wanna say
I'll play with it today.
Couple things. First of all, for those of you who don't like AI, that's all from AI. It's my idea and my direction to pull it together. And, hey. What about this?
Let's add this. I think it should have that. But I don't know how to do any of that. So Right. You know, I
maybe If they don't think that their schools are using AI for their IEPs or five zero four plans, they're wrong.
You're out of your mind. Yeah. Yeah. Yeah. So fight fire with fire as Metallica said.
Right. Okay? And other people. And so and so there's that. First of all, there's that.
Also, you could build your own if you want. It's not for me. Also, you can see where all the information comes from. Thanks to places like the ADA and, you know, who who have been, you know, putting this information on their websites forever, but it's hard to find, hard to get out. Also, ADA, why don't you just do this?
Why am I involved? And so but it was an idea. A guy asked me for help, and I I'm a person who sits at two computers. There's a computer I make the podcast on, and there's a computer I think and and, you know, and tinker with when I think I I don't know what I don't know what people think my job is. But in my mind, my job is get up in the morning, hear from people with diabetes, see what they need, try to give it to them.
Like, that's and that's where that website came from. So I hope you all love it and use it. And, again, feedback would be awesome. I'm actually having a meeting tomorrow with just a guy who's been on the podcast before who's just into all this, and he and I are gonna sit and look through it, and he's gonna give me suggestions about it and and back and forth. I'm I'm not the end all be all for certain.
And but but when I was making my daughter's five zero four, it would have been pretty awesome if this existed.
So Oh, absolutely.
And and what this conversation should have taught you is that Jackie and I, we just possess personality trait and a skill that not everyone has. And and that's why I'm sure she did great in her five zero four meetings. I did great in mine. And it's not a it's it's no slight on you if you're not that kind of person. But but don't go into those meetings and just let somebody run you over.
Mhmm. Because these these things can be really important. And maybe not every day, but, man, every couple of years when you least expect it, you're gonna be thrilled that somebody knows the stuff in that five zero four plan and that they're paying paying attention attention for for it. It. So that's my opinion.
Yeah. I think going calm, going educated, going with boundaries and knowing what you won't settle for and what you would be willing to negotiate with, and go in knowing that the whole goal is to level that playing field for your child and to keep them safe and healthy.
Yep. That's it. And don't forget nothing here in the Juice Box podcast. We advice medical or otherwise. Always consult a physician before making any changes to your health care plan.
Thank you. Jackie, I
And it's not legal either. Not
legal advice. Please. Legal. Nothing here in the way. Did you not hear me say medical or otherwise?
Nothing's advice. It's a podcast. If you're listening to me, you're out of your mind. What do you think of that? There.
Alright, Jackie. You're awesome. I'll talk to you soon. Hold on one second for me. Okay?
Okay.
Back of an episode today, wouldn't you say? Let's thank dexcom and the Omnipod five for sponsoring. That's right, my friends. We were sponsored today by the dexcom g seven. Dexcom.com/juicebox.
Head over there right now. Look into that fifteen day dexcom g seven. Fifteen days is a long time. It's like half a month. Don't check my math, but I'm pretty sure I'm right.
And let's also thank the Omnipod five. My goodness gracious. Omnipod five tubeless. A beautiful algorithm's updated now with that new 100 target. Get in there.
Find out more about it. Omnipod.com/juicebox. You want some tubeless insulin pumping? Yeah. You do.
Heck of an episode today, wouldn't you say? Let's thank Dexcom and the Omnipod five for sponsoring. That's right, my friends. We were sponsored today by the Dexcom g seven. Dexcom dot com slash juice box.
Head over there right now. Look into that fifteen day Dexcom g seven. Fifteen days is a long time. It's like half a month. Don't check my math, but I'm pretty sure I'm right.
And let's also thank the Omnipod five. My goodness gracious. Omnipod five tubeless. A beautiful algorithm's updated now with that new 100 target. Get in there.
Find out more about it. Omnipod.com/juicebox. You want some tubeless insulin pumping? Yeah. You do.
Read the full disclaimer
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#1970 Once You Step on the Plane
Once You Step on the Plane
Four weeks after his diagnosis in 1992, thirteen-year-old Christian flew to England alone for language school. Today he lives in Switzerland and travels constantly — and he has a system.
Jump to a moment
- He left home four weeks after diagnosis. Christian was diagnosed at thirteen in Germany after a summer of unquenchable thirst — freezing water because he couldn't get enough of it — and, weeks later, traveled alone to England for language school. His host mother was an emergency room nurse, arranged partly so it wouldn't go off the rails. He credits that trip with putting him on a path of not being afraid.
- He was diagnosed at the right moment in history. His hospital was one of the first in Germany to specialize in intensified insulin therapy — basal and bolus — staffed by enthusiastic doctors and nurses. Scott points out that a few years earlier and he might have spent decades on older regimens. He later moved to a pump to avoid injecting several times for a single meal.
- Thirty-four years, with the last fifteen in the fives and low sixes. His early A1cs were higher; routine and technology brought them down, and he's been in the high fives to low sixes for about fifteen years. He now DIY loops with Nightscout and shares his data with an endocrinologist who is open to it — she describes him to others, fondly, as the patient who does all these crazy things. What he wants next is technology that takes him out of the process, and insulin that knows when to stop working.
- His time-zone rule for long flights. The moment you step on the plane, the new time zone has started. Flying east means shorter days, so he gives long-acting earlier and aligns to the new zone; for short trips of a day or two, he stays on home time and doesn't adjust. Setting a phone to the destination's time zone helps. This is one traveler's approach — work your own plan out with your care team.
- Practical lessons from a lot of airports. Glucose tablets are fast, easy, and nobody cares about them at security. Insulin is less fragile than the packaging implies, though heat still deserves respect. He once cracked half his pods on a summer vacation because he didn't know aerosols affect the material. Scott's rule to add: if you're bringing one spare pod, bring two.
- Diabetes Pro Tip series — Episodes 1000-1025 — settings, insulin timing, and food impact.
- Juice Cruise 2027 — Travel with the Juicebox community — July 21, 2027, from Orlando.
- Juicebox Podcast Facebook group — 86,000 people who might have your experience — private, free to join.
Every word of the conversation
Cold open & sponsors0:02
Hello, friends, and welcome back to the juice box podcast. If you don't love today's episode, you can have your money back. You should not, in any way, shape, or form, take anything you hear on the juice box podcast. As medical advice, I'm talking about medical advice, regular advice, any kind of advice. This is a podcast.
Nothing you hear on the juice box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan. I cannot stress that enough. Three fast things. Juiceboxpodcast.com/juicecruise.
Check out the cruise. T1dexchange.org/juicebox. Fill out the survey. One other thing. I don't know.
I said three things. Now I only have two things. Oh, why don't you go follow the private Facebook group and the public Facebook page? Juice box podcast type one diabetes. There's two.
You'll see. One has, like, 87,000 followers. One has, like, 30. Today, we've got a great podcast, and it's sponsored by great advertisers. US Med, the Eversense three sixty five, and Twist.
You know about Twist? It's an insulin pump. I'll tell you all about it in a second. I'm having an on body vibe alert. This episode of the Juice Box podcast is sponsored by the Eversense three sixty five, the only one year wear CGM.
That is one insertion and one CGM a year. One CGM, one year. Not every ten or fourteen days. Ever since cgm.com/juicebox. This episode of the podcast is sponsored by the Twist AID system powered by Tidepool.
That features the Twist loop algorithm, which you can target to a glucose level as low as 87. Wanna learn more? Go to visit.twist.com/juicebox. That's visit.twist.com/juicebox. And Twist has two i's.
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It's where we get our diabetes supplies from. You could as well. Usmed.com/juicebox, or you can call (888) 721-1514. US Med, that's where my daughter gets your supplies. Use the link or the number.
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Hi. My name is Christian. I was diagnosed with type one diabetes in 1992 at the age of 13. And four weeks after my diagnosis, I traveled from Germany to England without my parents for summer language school. I've traveled ever since, living and working across seven countries in three continents.
Alone to England, four weeks in2:44
Oh, no kidding. How old were you when you're diagnosed?
I was 13.
13 in '92. 2002, '12, '20 '2.
One on second. So I'm 47 now.
Thank you.
Almost thirty five years
ago. You, Christian. I see you saw me struggling. You're like, let me jump in. I
I I did the math prior to coming out of the call.
Thank you. That's awesome. I I, you know, I I just popped up your your kinda your intake here. You said maybe the funniest thing that I've that I've seen in a while, how did you put it? The how how scared people are of scanners in the airport.
Yes. Yeah.
I I I I can't wait to get to all the traveling that you do when we talk about it because I have to be honest. I I sometimes think the same thing. Like, I I I don't know exactly how to feel. Like, I don't want people to be scared, and I certainly don't want them to go against anything that might be in a package insert or anything like that. But, you know, I've watched my daughter go through, you know, hand scanning, the big body scanners, the old scanners.
Nothing's ever happened. So,
you know I totally understand why it's scary because there's so much information out there. Some it's conflicting, and it's a stressful situation. So I think if we can, you know, educate and help people a little bit to take some of the stress off, that would be very helpful.
Yeah. No. I agree. I you're not wrong either. You're standing in that line, and if it's in your head in a moment, I'm gonna walk through that scanner on the other side.
My pump's gonna stop working. My CGM's gonna shut off any of those things. I can you know, it it's a big deal. And some people are not excited to get a hand pat down either. Although I Yeah.
And in some some regions, that's even frowned upon. So I've been to airports where it's really like, really, do you have to? Okay. We have to get find somebody, and then already it's a bad situation.
Oh, they don't even wanna do it. I actually I I I almost, I almost left the airport with a date, I think, recently. So I the gentleman gentleman was very thorough. He found he found everything and there was nothing to find. So
Well done. Yeah. Yeah. Yeah.
So tell me a little bit about being diagnosed back then and what it was like growing up with type one.
Diagnosed at thirteen, in 19924:55
When I was diagnosed, think, 9010, '92, you know, I was a skinny teenager, tall, not lots of skin on my body, and I was physically very active. I was playing soccer. I was playing basketball. And, you know, I've heard it so many times, but people attribute that then to the symptoms that are coming up. And I had experienced lows during school.
I didn't know what it was at the time, but I realized afterwards that I I was having lows. So there was something going on already in my body, maybe one or two years before that. And then at the beginning of the year around February, I had a really bad virus infection. I remember that. I was really knocked out cold for two weeks, feeling really, really bad.
I can't remember what it was. But then a few months later, late spring, early summer, remember the weather getting hot, and I was doing lots of outside activities, and I just started getting really thirsty. And then the peeing started, the weight loss started. And my parents recognized that something was going on, but they kinda assumed it was from the sports and that they thought I was maybe doing too much exercise. And looking back, all the obvious signs were there, but nobody was around knowing what these signs meant.
I remember putting water into the freezer to freeze it over because I couldn't quench my I was so dry in my mouth. I was literally drinking ice cold water and not being able to quench my thirst. And that's been going on for a few weeks. And eventually, had other friends pointing it out to me. One friend said, you've just finished a quart of milk in one zip, in one go.
What's going on? And that's when I started feeling really uncomfortable as well. And then eventually I got those those flu like symptoms. I got really tired and I stayed at home for a couple of days. And eventually, one night after my parents had gone to bed, I started being really sick to the stomach and only bile came out.
So the body clearly was reacting to something. Something wanted to come out. And I went through this for a few hours. And then early morning, I woke my parents in the middle of the night cause I was feeling so bad. And my mother looked at me and she told me afterwards she saw my chest and hip bones showing out.
They were protruding from under the skin because of all the weight loss and the dehydration. So she rushed me to the ER where I was luckily immediately seen by the head doctor. And what I remember was that he bent over me and he smelled my breath and he said, this is likely diabetes. And then I passed out. That was the last thing I heard.
Really? Oh my gosh. Yep. How long were you out?
I didn't know what it meant.
Yeah. Of course. Well, you didn't have time to wonder either. How long were you out for?
Than twenty four hours. So I I got to some point the next day.
Oh, it still feels like a lot. It feels like such a long time to to be on your your parents must have been beside themselves.
Yeah. The my my mother was was terrified. And when I woke up, then I was in the ICU, and then I learned that I had a glucose level of around 700 plus. I can't remember the exact number. Obviously, was in severe DKA.
So there was a lot going on, but luckily I made it in time.
Right.
And then I got hooked up to IV for fluids and nutrients at least for a couple of days just to get my body back to to a normal functioning.
It's interesting. You were pretty thoughtful about the process even at a young age, the way you were thinking it through and talking about it and and even your friends. I mean, when when you're counting on, you know, young boys to to notice things are different, That's, sounds like a a fairly, adept group of kids for some reason. Would you guys all grow up to be engineers or rocket scientists or something?
I don't think any of us are rocket scientists, but, I did have some or still do have some very smart friends. Interestingly, the girl that pointed out to me, not one of the boys, so she was mostly the the most empathetic of the group. Mhmm. And I I think for them, it was just weird, you know. Me seeing me standing in front of a fridge downing a full quart of milk like it was nothing.
Yeah. And they they found it funny, but also a bit disturbing.
Jeez. That's something. Diabetes, as you know, comes with a lot of things to remember. So it's nice when someone takes something off of your plate. US Med has done that for us.
When it's time for Arden supplies to be refreshed, we get an email. Email just rolls up in my inbox. It's like, hey. This is, you know, time for your supply order. I don't exactly know what it says.
Open the email. There's a big button. I click on it. I reorder, and I'm done. Finally, somebody taking away a responsibility instead of adding one.
And boy, oh, boy, has US Med done that for us. An email arrives, we click a link, and the next thing you know, your products are at the front door. That simple. Usmed.com/juicebox or call (888) 721-1514. I never have to wonder if Arden has enough supplies.
I click on one link, I open up a box, I put the stuff in a drawer, and we're done. US Med carries everything from insulin pumps and diabetes testing supplies to the latest CGMs like Libre three and the Dexcom g seven. They accept Medicare nationwide, over 800 private insurers, and all you have to do to get started is call that number, (888) 721-1514, or use my link, usmed.com/juicebox. Using that number or that link helps to support the production of the juice box podcast. This episode of the juice box podcast is sponsored by the Eversense three sixty five.
Get 300 and get three hundred and sixty five days of comfortable wear without having to change the sensor. When you think of a continuous glucose monitor, you think of a CGM that lasts ten or fourteen days. But with the Eversense three sixty five, it lives up to its name, lasting three hundred and sixty five days. That's one year without having to change your CGM. With the Eversense three sixty five, you can count on comfort and consistency, three hundred and sixty five days a year.
Because the Eversense silicone based adhesive is designed for your skin to be gentle and to allow you to take the transmitter on and off to enjoy your shower, a trip to the pool, or any activity where you don't want your CGM on your body. If you're looking for comfort, accuracy, and a one year wear, you are looking for Eversense three sixty five. Go to eversensecgm.com/juicebox to learn more. You still friends with these people?
Yeah. Most of them.
No kidding. That's pretty cool. Out of the hospital, do you remember what the marching orders were? Like, what is it like, what were your goals? What were your your targets?
Yeah. The first thing I remember in the hospital, in the ICU, was maybe a day later. A nurse came up to me and she told me that now it's time to inject myself with insulin for the breakfast. And I said, what? What's what's happening?
I don't think anybody so far had properly told me my diagnosis. And I told her, no. No. This is not happening. And she was the one then explaining to me, you know, if if I wanna eat, I need this injection and that's how it's going to be the rest of my life.
“That's how it's going to be”12:27
And that was my first confrontation with a new situation. What is So I took the jab or she gave it to me.
Yeah. I was gonna ask what that confrontation feels like internally.
It was really weird at the time because I didn't understand the implication or the the vastness of the consequences. But at the time, my reaction, I say it was more like, okay. If if that's how it is, you know, authority figure, then that's that's how it's gonna go.
Okay. Okay. You're not not a lot of, like, internal struggle or just you you needed somebody to put it to you once you understood you okay. This is what I'm gonna do. I'll move forward with this.
Yeah. And I remember, like, over the next few months, several doctors telling my parents, you know, there's going to be this reaction and Christian is gonna throw everything away and say, I'm not having this disease. I don't care any longer. That interestingly never happened for me. So I think I was accepting quite quickly, and it never really changed.
You know, there's fatigue and all that that comes with the disease, but I I never got to do that situation where I just rejected it outright.
How often do you think the fatigue comes and how long does it stay?
I didn't really think about it maybe for the first twenty years or so, but now it's something that I think about more often. And, you know, I I love all the devices that I have now, but part of that fatigue comes from having the devices and comes from having the information and and the frustration that comes with, you know, not having that great glucose level that you were looking for after lunch.
Mhmm.
So I would say more fatigue now than in the past for sure.
Okay. Is your health better, but the fatigue is different?
It's mental fatigue. Yeah. It's it's it's this exhaustion of having to deal with it all the time.
Are there ways to give it away for stretches of time or no?
I haven't found them. No. I I would say I'm I'm quite serious about managing my diabetes or at least I have been for for the last decade or so. And I I want to be in good control. I want to have good outcomes.
And that also then requires me to deal with it quite regularly.
So when it's not a in stretches of time when it's not a burden, are you paying less attention to it? Are you willfully putting it out of your head? How do you how do you make the gaps?
I think the burden comes from not achieving my goals. So having diabetes, I've I've had it for forty years almost, so that that's that's not the issue. And it's knowing what can come with bad control, understanding the consequences, aiming for good a one c's, and then, you know, having lunch and running back with a 200 blood glucose level and not knowing why that happens even though you've done it a 100 times the same thing. That's what's exhausting me.
The genuine you're genuinely trying. If the outcome isn't where you'd like it to be, where you expect it to be, or where you've seen it go in this the same situation previously, then it makes you think about long term issues, and that's the drag.
Part of it. I think it's it's mostly frustrating for me. So, you know, having a certain food, knowing how to manage that, eating the food, and not ending up where I want to be. And seeing it on the graph, you know, that you got the the double arrows going up or down and trying to manage that, knowing the roller coaster is coming and maybe not being able to get out of it quickly enough, that I find exhausting.
Do the people around you know this is happening to you?
In a limited degree. So I've always been very outspoken about having diabetes and what it means, but the daily ins and outs, I'd say even my family only have a limited understanding of how it feels like.
How old you have children?
Yes, I do. My wife and I, we have three children. The oldest is 14. His name is Lucas. And then we have two girls, Laura, who is 13, and Lily, who is eight.
How much to share with his wife16:37
If you let your wife in to the depth of how this feels, would that be comforting to you, worrisome? Why doesn't she have that kind of access?
I've always been private about the numbers or or where I am with it. I don't think I wanna bother anybody too much with it. I I don't think she would mind necessarily, but I've I've never done it that way. And we've been together since we are 17 years old, so I think we are a little bit past the point of of me letting her into bed.
Well, what she she'll hear this. Right? Yeah. What do you think her reaction will be?
I don't know.
I don't either. I'm super interested.
It's it's yeah. It's it's interesting to find out. Right.
Yeah. I mean, is she going is she gonna come to you and say, you you should tell me everything. I want to know. Do you think she'll just stand back and respect the fact that you haven't come to her? And I I just the the thing I wonder about is is, like, what happens at the end when eventually something like this comes out and you realize that the person you were with wanted to know and would have liked to have known, it could have unburdened you.
You could have done it more together, and now it's too late and you can't go back. That's the feeling, the the too late feeling is that I worry about.
Yeah. I don't know. I that's that's not the worry I have that that she feels excluded. We we talk about the disease occasionally and, know, especially if I'm having a rough day, I share that with her. But what I don't do, for example, share my DexCom results with her.
She has a life on her own. She's traveling also a lot for work. So from a practical perspective, I never saw much value in sharing that with somebody in my family because they wouldn't be physically around in case something actually happened. And also because I've been growing up with diabetes many, many years before that technology, I never felt the the need of having that information shared to anybody else. So I might be a bit old fashioned that way.
May yeah. Maybe. So if you get very low, no one is warned but you?
Well, only through the beeping. So for example, at night if something happens, then, of course, all my devices starting going crazy. And then my my wife wakes up and and wakes me up if that is necessary.
There's no value in her having a follow-up that just has a 55 alarm on it? And then if you get, like, urgently low, she'd know?
I never saw as really valuable for me because we don't spend much time physically together, and I'm very sensitive to lows. So I I don't sleep through lows. For example, I wake up fairly early on. Mhmm. And that way, I can pretty much control it myself.
Yeah. And she's traveling a lot. I'm traveling a lot. So she she might get alarms at all sorts of times that I can easily manage myself.
Okay.
And and that's why I never set it up.
Has it ever been an issue? Have you ever been in a situation you couldn't help yourself?
Only twice in the thirty five years.
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And both of the times she was with me, and she was able to help me.
And she helped you. I I wonder, people who haven't been married a long time don't know what you just said. I bet you're not physically together very often. I I there are days that I'm in the same house with my wife all day long, and I don't see her for ten minutes.
Mhmm.
Yeah. It's it's No.
No. That's possible. But it's also she has a job where she needs to travel a lot. And just, you know, being physically in the same country is mostly on the weekends, not during the week.
Interesting. Yeah. It's something. Your children, have they been tested for antibodies? Is that a thing you ever thought about or or or considered?
Yep. My oldest was tested a couple of years ago. He started reporting something that I thought might be hypos and, you know, remembering my own hypos before my
When one of the kids had symptoms22:01
Your diagnosis.
Being diagnosed. Exactly. And that made me nervous. So I took them to the doctor and and they checked them out. I put a Dexcom on them for a week or so.
All the stuff that freaked out type one parents do with their kids. And the doctor eventually said, okay, let's just do a test, see if anything's coming up. None of the five reacted, so he should be fine as far as we know now. I might do it also for the girls when they grow up a little bit. But so far, they don't show anything whatsoever.
That's good news. Other autoimmune for you or your family members?
Not for me. My older sister so I have two siblings. And my older sister, she used to have or has thyroid issues. I think it's hypothyroid, but I'm not sure. And my younger sister has clinical depression, which is not necessarily an autoimmune issue, but I know it's linked to that.
I've heard quite a few people talking about that on your podcast, so I found that interesting as well.
Your parents' celiac, thyroid, anything like that?
No. Nothing that I'm aware of. Also, in the wider family, seems to be really just me with diabetes and and the the hypothyroidism, my sister's side.
Just something special about the pairing of your parents, I guess.
Yeah. Probably. Yeah. Well They tried their best.
They tried their best. Can you imagine? Can you imagine if that was a prerequisite for dating? You know, you had to get screened to see if you had autoimmune issues before you got together.
I wouldn't be surprised if that's happening in the future at some point.
Yeah. Well, listen. I've You
know, bring your DNA to the first date.
I've told both of my kids. I was like, if they have any sketchy autoimmune things and you're not interested in raising a buy a baby with diabetes, I would I'd slow down a little bit. The the, your I'm sorry. Your kids, don't have other autoimmune stuff either. Generally healthy.
Not a thing you're thinking about totally. Okay. I think I got all that. Tell me about how you manage today and how that's changed over the years. So you're using a CGM and a pump, I imagine?
Yes. I do now. But I've only done that now for the last ten years maybe where I started with CGM and then later on moved over to a pump as well. So when I started in 1992, that was just around the time when a big study came out. It was called diabetes control and complications trial, DCCT.
Does that mean anything to you?
I I don't I know the time frame, but I'm not I didn't know about the study.
No. So essentially, that study was the first big longitudinal study that showed over many years that you would get much better treatment results when you actually manage your diabetes with basal and bolus. And not the old, you know, once a day or twice a day and then regulated mealtimes, etc. And I was lucky in the sense that when I was diagnosed, my hospital was one of the first hospitals in Germany to specialise on intensified insulin therapy. So effectively what we now know is basal and bolus.
Early to intensified therapy25:22
So they started me out with ACTRAPID and Protophane, I think it was called, from Novo Nordisk and having to test my blood sugar four to five times per day. And that was new at the time. So that was the cutting edge of science. And they kept me in the hospital for about two weeks to teach me about carb counting and insulin. Right.
And all the things that we now take for granted. And because it was new, I had really excited and enthusiastic doctors and great nurses teaching me lots and lots of things that I really benefited from. And I stayed on MDI for the majority of my care all the way through school, all the way through university, later on work. And also because I always felt I don't want anything on my body. I want to have physical freedom.
I'm doing fine with the needles until eventually my body started to really change in how I process especially fat and protein. Mhmm. So I needed to have, you know, double boluses and so on to cover these meals, and I got so fed up with having to inject me multiple tiles for one meal that I eventually considered a pump.
That's the only thing that moved you over to it?
Mostly. Yeah. Yeah. Well, for me, it was, you know, I looked at pumps maybe twenty years ago and the the doctor told me, you know, here's this pump and you need to change the insulin every twenty four or forty eight hours. You need to change the tubing every seventy two hours.
You need to change the battery every forty eight hours. Now this is way too complicated for me. And that basically stopped the conversation then for another ten years. And then when I came back to it, there was at least the Omnipod. And then I was looking to get something, you know, which was not an additional device that I needed to carry.
And eventually, technology progressed to a point where I felt, oh, this is kinda neat. I just slap it on my arm. I have everything on the phone. I can run with this.
I think it's interesting to to realize that wherever you get put in the beginning is where you generally stay and that it takes something or a lot of time to move you along. And to say that Yeah. If you had been diagnosed just a few years sooner before the basal bolus idea, you could have been regular in Miles per hour for those fifteen or twenty years.
Yeah. And that's the scary thought. Right? Yeah. You you really need to push yourself sometimes to make that step in in technology or in in the way you manage it and and get forward.
You have to pay attention to how things change. Resist the urge to jump at everything, but be able to step back enough to see a big picture and realize when things have taken a leap and you've been left behind. It's, not easy to do because who's gonna tell you about it? Right? You you know what
I mean?
Yeah. Like, your doctor's gonna say, you're fine. We don't think about we don't think about Christian anymore. Christian comes in, does great. We say, yay.
Good job. Move you on the way. Make sure you have your prescriptions, etcetera. No one thinks they go, oh, wait. We've changed how we've done everything until there's some giant push from organizations to move people, you know, like you talked about into pumping, for example.
And, you know, and some doctors' offices will ignore it. Some will never hear about it. Some will decide not to tell you about it. You don't know who's who. And it it's a I listen.
I'm particularly I'm particularly touched by this because as I've shared on the podcast, I think a fair amount of times when right at the end of my high school career, which would have been around '88, '89, my friend was diagnosed with type one. Yes. And he's he's just not here anymore. He you know, he he lived regular in Miles per hour for a long time. A long, long time.
I didn't even realize. And when they finally tried to get him to just go to MDI, it was completely confusing for him. And he was causing himself to be low all the time and having different issues. He was having, you know, episodes and falling out of bed. He crashed his car.
He had all kinds of problems. And and then, you know, before you knew it, his, you know, his kidney started to have issues and then his heart. And and and I just as as you're talking, I think I'm thinking about Mike, and I'm thinking, gosh. If he was diagnosed four years later, he would have been on the other side of that curve. Isn't interesting?
Yeah. Yeah. It's just really something.
That's a scary thought. And back in the day, if if your doctor didn't tell you, you didn't have any opportunity to find this out yourself. Sure. And these days, we have all these opportunities to learn if we want to. And this is just ads, you know, you can hear about five different CGMs, you know, just listening to your podcast, maybe.
And, you know, that's already great information that there is choice. You know, not everything is for everybody. I've tried things and felt, okay. I don't wanna use this, but I found something else that works instead. Yeah.
And I speak to so many people who say, I've tried this once. I didn't like it, and then I stopped. And then then you don't move forward, and then you get into all these problems that you've just mentioned.
Well yeah. And that's the next problem is that there's, I mean, five things to try, three CGMs, you know, all this other stuff, and you make you you finally get yourself to move once. And if you don't land on something that's great for you or if you don't even I mean, maybe it was great for you and you just didn't know how to accept it. There's a lot of things that could happen in there. Right?
And then you'll shut yourself back off for ten years again. And and then, oh, I'll just I'll put my head down and keep doing the thing I do. You know? And I don't know. It's a it's a really I'm going to say scary, but I think there's a bigger word that I can't find.
It's it's incumbent about it's incumbent upon somebody, and I don't know who that somebody is, to keep saying this stuff out loud so the next person can hear it so there's not a giant gap in time. I I just I the way I've learned to say it is that I I don't think you wanna wake up one day and realize everyone's doing it differently than you.
Wake up and everyone's doing it differently31:27
That's probably Then you're stuck.
Right.
If if if you're if you're the last one, you probably won't change. And if there's comfort in the continuity, right, that's why people also don't change because they know what they're doing or at least it's less scary than the unknown that they're faced with. But I totally empathize with what you're saying. And and for me, it it was an endocrinologist who kept on saying, well, how about that pump? You know?
Wanna have another look? And and eventually, I was ready for it.
Yeah. Mike Mike wouldn't wear a CGM. I tried really hard to get him to wear one, and he just he wouldn't have it. And now he's shooting NovoLog, and I don't even know. He's probably using Lantus.
I'm not sure. And but he was shooting it like he was like, it was still old school. So, you know, then, you know, he used to you know, the way he had his car accident is he was, you know, he's out getting his books. He's a comic fan. He's out getting his books one Saturday morning and, you know, decides he's gonna go to the diner after this like he does every Saturday by he's out by himself and, does what he always does.
You know? He would have shot his insulin and, you know, at forty five minutes later, sat down at the diner and ate. And, you know, now he's using NovoLog. Yeah. And it was too late.
And the reports had him 90 miles an hour down a a residential street disappearing into a cul de sac coming back out crashing into somebody's front lawn, you know, and he's lucky he didn't die that day.
So Yeah. That that sounds like a very confused man.
Yeah. Didn't know what he was doing. He'd been doing he'd been doing one thing for decades, and then someone without any direction just said, here, use this now. And he applied old ideas to new, you know, to new tools. Didn't work.
He didn't know what he was doing. He got caught in that loop where he was just chasing lows and panicking and not knowing what to do and, you know, it's just it's it doesn't need to be that way, I guess. So Yeah. Yeah. Anyway
I started out with a with a freestyle Libre in my late thirties about ten years ago, And I was amazed when I when I first laid my hands on that. I remember paying for it out of pocket because I just wanted to have it. That was such an improvement in quality of life, not having to prick my fingers five times a day, getting to see the curve, you know, and understanding timing and amount. And, you know, you always say it's that simple. Right?
That's that's all that it is. But this was the first time I could actually see, oh, if I do something now, it has an impact later. How can I bring these two together? So that was for me really a game changer.
And that was the you had to scan that one to get a number. Right?
Yeah. At the beginning, you have to scan that. And then a little later, they moved it onto the phone and then you could just scan with the phone. But even that was amazing at the time. You know, now it's all automated.
But I think the big step was then really just just see the graph over time throughout the day.
What do you hope happens next when you look at your technology? What is what's the next thing you'd like somebody to give you?
That's a difficult question. In the short term, I think better devices, all of them, you know, have their quirks and and could be improved upon. On the long term, I would love to something that love to have something that's so automated that I no longer have to worry about it myself. So right now, with the Dexcom and the Omnipod, I use Loop, and that's pretty dialed in, but it's it's still, you know, fairly intensive daily management. You need to know what you're doing.
What he wants next35:05
You need to put into the carbs and all that. And I would love to get to a point where I can eat and the system recognizes something is coming in and does it in a quick enough way that, you know, the reaction is fast enough. And the other thing I love to see, and I've I've read that once in a research paper a couple of years ago, there's a UK company that has created insulin that basically can shut itself off after a certain glucose level. So if you drop below, let's say 55, the the insulin that is still in your body would stop reacting and stop being used up. And I thought that's such an amazing technology because it basically would get rid of the lows.
And if if we can get that done, that would be amazing.
The idea of smart insulin. I haven't heard people talk about that in quite a while. That was a a a big push, I'm I'm gonna say, like, ten years ago now, where that's yeah. Well, we just shoot it in there, and it works when you need it. And when it doesn't, it shuts off, it'll and be like having a pancreas and everything.
But is the thing you read more recent, or do you think it was older?
It was more recent. It was maybe a couple of years ago, company from The UK. They said they have a breakthrough, but it was all on the academic side. Right? So not on a viable product side.
Yeah. Well, I mean, that's the rest of it is all that research that has to go in and people, it has to be viable enough for them to keep working on it and And and, you know, and then the and then the industry will change. GLPs have changed the industry now. Right? There's such a focus on on those medications now, and I wonder how many things get dropped along the way and never get figured out because I yeah.
I don't know. Smart insulin would be awesome. But if that happens
would be awesome.
I'd I'd be stunned. But I I appreciate the idea of, like, if you're asking me what I want, I want I want technology that works more quickly, that takes me out of the process, insulin that knows how to not make me low. So what you're telling me is those the the pain points that you mentioned earlier about, you know, having to be involved and being low. Those are your two things that you'd love to change. Yes.
Yeah. I can't see a different argument, really. Don't get high. Don't have to think about it. Don't get dizzy.
Yeah. Somebody That's almost perfect. Yeah. Somebody do that for me, please, quick. Yeah.
I'd love to give that one. Last night, Arden was I was working late, she passed by my door. I tried to talk to her, and she was, I I I can't talk. I'm low. And she was going downstairs to get food.
And even though she went downstairs, I heard her laughing. She came back up. She went to bed. She was fine. I think her blood sugar went up to, one thirty.
It leveled back out and came back down overnight. It's to hear you talk about it gives me some context about what that's gonna look like, you know, thirty five years from now. And it's gonna look like no matter how well I'm doing or how intelligent I am or how much I understand this, that burden's gonna be a burden. It doesn't stop because I do a good job of it or because I understand what's happening to me. It's still a burden.
Yeah. And I think as as long as we don't have something like the functional cure from the addendum trial actually being a real thing, it's going to stay that way. And I think it's, you know, it's much, much better than it was forty years ago, twenty years ago, ten years ago. So we're definitely progressing in the right direction. But in the end, it's something we have to deal with, and and some of us deal with it better than others.
It's probably also very different if your child has it. Probably heartbreaking hearing your children saying these things, and you don't know what you can do in that moment to help them. But, you know, they also will figure it out for themselves.
That's what I'm starting to believe. Yeah. How about that? Well, tell me, I guess, how the process of growing up, did it have any impacts on your long term health? Do you have any complications?
Did you get lucky? How did those years go?
For the most part, I got lucky. Just now I'm starting to see sort of the first signs of long term effects. I can see my digestion slowing down. My doctor wants to test me for Graspoperides. And I also feel now much more sort of coldness in my feet.
Neuropathy is a topic that I need to discuss. Mhmm. And I still feel really well in my feet. It's just that they cramp, they get cold, and my doctor said that's possibly one of the side effects of diabetes.
Oh, jeez. And how old are you again?
47.
47. Do you have any idea what your a one c's were were like in the first twenty years?
Three decades of A1cs40:07
Yeah. So mostly for the first five years, they were in the seventh. Then later on, when I then sort of finished high school, went off to university, they got worse, probably in the high sevens, in the eights. You know, the entire lifestyle took a toll on my diabetes management. Too much fast food, too much alcohol, too much fun.
And then when I was in my mid twenties, probably, you know, started working properly, had more of a routine. I went back into the sixes. By the time I was living in The UK, I had a very nice sort of general practitioner doctor who was supporting me, basically saying, you know, you have a a one COf six Something. That's all good. Do what you need to do.
You know more about this disease than I do. That was the care at the time. And then a few years later, I moved to Switzerland. Here, we have a very good health care system. I found a good endocrinologist who was also pushing me a little bit.
I'm expecting a bit more from me. And now for the last fifteen years, I was in the low sixes or high fives, five eight, five seven, usually around that. And I'm quite happy with that.
No knowledge of variability back then, though. If you had a seven A one C, you don't know how you came by it. Were you low a lot? Or do you think you were very variable?
I was quite variable, and that was always my main challenge. That was then where where I'm having a CGM really helped me because I could see things change over time and react more quickly. In the past, I was yo yoing for days simply because I figured couldn't figure out what was going on. And, you know, I would crash. I would eat something.
I would go up again. I would try to counter it again. And that's something which I can control much better now with the existing technology than I did in the past.
With your hindsight, have you gotten have you get a pump or a CGM more quickly than you did?
Well, I I got the CGM, I think, quickly as as they got up here in the market. Mhmm. And then when I when I got the pump, I didn't really see that having a big impact on the variability. It it really helped me with some of the foods and and the digestive issues, but not so much with the variability.
I see. So the the CGM taught you what you need to know. You were accomplishing it with a pen or injections or something.
Exactly.
Yeah. Then you gotta start making a bunch more injections around meals that irritates you. That puts you to a pump. When do you go to looping? When do you try AID?
I started about three years ago.
Oh, okay.
And quite quickly after having the pump. So that was really my aim. I said, I want I want to have this pump, and then, you know, as as soon as possible, I want to change. And at the beginning, the technology wasn't right because you needed to have another link in between that I couldn't get here in Switzerland. And eventually, they said, now we can do it through the iPhone.
And as soon as that happened, I jumped on loop.
Your doctor told you about looping?
No. I found that myself. My doctor is quite open to it. So when I started looping, I set everything up including NightScout, and I I shared my access details with my doctor so she can see what I'm doing there. She's not super involved on that side.
I think she she leaves that to me, but she appreciates me getting into that. And, you know, it's she learned something from that as well when I tell her about the new algorithm experiments that are coming. And over time, we've developed a good report on that.
Nice. Do you think you helped her to tell other people about it, or is it just a thing you guys do together?
I I do think she talks about it to other people, but more in the sense of, you know, I have this one patient who does all these crazy things.
Have I told you about Christian? It's interesting, but she sees your outcomes and and, I mean, you're you're clearly doing better now than you were before. Is that right? Like, outcomes wise? Say so.
Yeah. What about
So if you look at
Go ahead.
If you look at a one c, certainly, I went, you know, with a pump and then later on with with a loop from the low sixes to the fives. So there there was an improvement. And she sees that and she appreciates that, which, you know, allows me a bit more freedom. Know? So in the past, she wanted to see me every three or every six months, and now she says, okay.
As long as everything is fine, you know, come by once a year to renew your prescription for everything else. Just text me or send me a message.
You said earlier about going away to college, and I wonder, you you know, knowing yourself back then and being older and smarter now, is there anything that, like, today you could have said to that kid back then? Like, hey. Would you like your feet to be warm when you're in your forties? Or, like, is there would there have been any way to get through? I realized that that kid didn't have the tools and the technology, but he also didn't know what was happening.
Do you think there would have been any way to explain it?
I don't think so.
I don't either. Yeah.
It's it's it's super hard. I mean, I I think for the situation I was in and the tools that I had, I did quite well even at the time. And when I listened to the friends around me, they always considered me to be quite a conscientious diabetic, even though, you know, I did as many silly things as anybody else, whoever was on the podcast. But overall, I think I always took it serious, and I was always nervous about long term complications. So I wouldn't just ride high for hours on end and not be bothered.
So if if my blood sugar goes up, I want to act to get it back down. And that was always the case for me. On the other hand, I think what I didn't understand then and what I do understand better now is how the disease over time just impacts you mentally and physically. And that's not something you can explain to a 20 year old. You know, you're you're in that state of your life where you're amazing and life is endless and you have limitless energy.
And you don't sit down with this kid and tell him, you know, worry about this and worry about that. That conversation is not working.
And I wonder what it would even do. Like, say you could get through to that kid. What would that would there be a benefit in that or not necessarily, or would it be, you know, person to person? It's I I guess I'm I'm trying to, like, listen to your story, and you're a thoughtful guy, and you've been paying attention to this for a long time. You know how you feel.
You know what's happened to you. I'm wondering if you have any advice that would help somebody in that new situation now, but I I it does feel like a it does feel like there's no way to answer that question or or to come up with something that would just, I don't know, be, like, super impactful to a younger person.
Yeah. When I when I do speak to people who who've just started with diabetes, mostly I direct them to you because I think you can distill things in really good way when talking about it, especially when, you know, in your earlier episodes when you talk about how your daughter grew up with diabetes. I think this is extremely helpful for parents who have young children with diabetes, just to take that fear away. And that is maybe one of the main positive aspects looking back over the last thirty, thirty five years. I didn't have a lot of fear that was stopping me from doing something.
You know, I was concerned about a lot of things and I needed to take care of a lot of things. But I was never so afraid that I wouldn't live my life. And I see many people who are diagnosed with diabetes or listen to them on your podcast, especially when their kids are being diagnosed, they're almost catatonic from fear, you know, of killing the child, of doing the wrong thing, you know, of the terrible lows at night. And I think if you can give people a bit of peace of mind and and giving them the opportunity to look past the first six months even though it might not be easy, that's as much as you can do.
Yeah. No. I I agree. And I I don't know that it's I don't know that it's possible in every situation to not start inside of that fear in the beginning. That makes that just makes sense.
I I I really feel like getting to getting to the understanding of how insulin works and what technology can do for you and the idea that you don't need to be afraid, you can be a little bold. I think the sooner you get those things together, the sooner you can kind of move forward and hopefully break free of the fear quickly as possible. I mean, it's been my theory. It's funny. I'm asking you what you would do, and you're like, well, I would tell them to listen to your podcast.
Like, that help that help me at all, Christian. I'm trying to dig here. So I'm sorry. No. No.
No. You know, I just I have heard people say, I started listening to bold beginnings episodes in the hospital, and then I listened back to the the the podcast. And I hear some people who were have described being scared, and I think I never really felt that way. And so I'm I tend to believe that. I tend to believe that if you get people right away and you put them on a good path, it's very possible they could avoid a lot of the pitfalls that that others describe.
Yeah. And that was that was really my story back then. So when when I was in in the hospital, as I said, they had this really nice setup there and they they taught us a lot. And then during the second week after my diagnosis, my mother approached the endo because we had planned the summer school program for me in The UK. So I was meant to stay in The UK for three weeks, traveling over from Germany, living with a host family and attending language school during the day.
Language school, and an ER nurse host50:23
And my mom asked, you know, would it be better to cancel that trip, baby? And the doctor thought about it for a couple of minutes and said, your son needs to live with this disease his entire life. You know, he will likely be honeymooning. What's the worst that can happen? If we can train him to prevent lows, you know, send him on his way.
Do you think that did you think that decision helped put you on that path of not feeling afraid?
Definitely. Definitely. Because it it kind of told me, you know, first of all, you'll be alright. You can continue living your life. And as well as, you know, this is this is manageable.
And then there there were a couple of, you know, benefiting factors. So they found me a host family where the mother was an ER nurse, and and they would make sure that it wouldn't totally go off the rails. But eventually my parents were comfortable enough to let me go. And having this experience, you know, of almost independence at 13 for a few weeks just after this diagnosis, that really told me I can do anything, and I just kept on doing it.
Yeah. And I think Otherwise. The the lucky piece there is that in those three weeks, nothing terrible happened. Because if you Absolutely. Yeah.
If you tell that whole story and seven days into it, you have a seizure at the at the host family's house, well, then you're not here telling me how you felt empowered your whole life and you weren't scared. You're gonna it would literally be a different story.
Yeah. Yeah. You're probably right. Yeah. My biggest challenge at the time was that in The UK, they had something called no sugar chocolate.
And I thought, oh, this is awesome. I saw it. I bought it. You know, I can eat this. And it turns out that instead of sugar, it had maltose, which is highly diuretic.
Mhmm. So that was a learning experience.
You got the you got the British version of the trotz. Is that what happened?
That's right. So I spent a couple of days on the toilet just cleaning that out.
Yeah. People don't know. They they just don't know. I listen. I had a crazy experience once where I was landing.
I went out on a I don't know. I just went for a flight somewhere. Don't remember where. And in the, like, on the last fifteen minutes of the descent, I had some candy that I didn't realize had that in it. And my gosh, like, I got into the airport.
I was like I was like, something's wrong.
And it You'll be running fast. Yeah. No kidding. No kidding.
I don't know why they bother with all that prep for, colonoscopies. They can give you a roll of lifesavers made with that stuff. Be on your way. Yeah. Probably.
So let's finish up talking about the travel. So you've lived in how many countries and traveled for business? You traveled for pleasure? You traveled with people alone?
Yeah. All of the above. So after, you know, coming back from from the summer school, my next big day was to do a foreign exchange here in The US. Both my parents were at university in The US in the seventies, and I always dreamt of, you know, doing that, learning about the American way of life. And then in 1995, I got a placement in California and went to live in California for a year, stayed at the the local high school for the final senior year.
And, I basically travelled there with a big suitcase, half of it with diabetes supplies. I brought twelve months of insulin and six months of testing strips and all sorts of things. And then the rest got shipped to me from my parents throughout the year, I had enough supplies while I was there. And what was interesting, when I arrived, I spoke to the high school nurse and, you know, she was aware that I was diabetic, but she didn't know anything about that. She had nothing to do with it.
There was no four or five plans. There were no other kids with diabetes. Basically, she told me, you know, do your thing. Don't bother me. If you have a problem, you can come.
Yeah. Leave me alone. Leave me alone. I'll leave you alone, kid. Yeah.
Exactly. But but again, for me, was reinforcing. Right? So, yeah, you you can do it. Don't worry about it.
And then, you know, while I was in The US, I I traveled around from West Coast to East Coast, visited some people, And I built up this sort of travel routine at the time, you know, like, you know, bringing twice the amount of insulin that you need and, you know, what what to keep on you versus what you put into the suitcase for check-in and so on. And one thing I I wrote down to me at the time was, you know, always take glucose tablets with you when you travel because that's fast, it's easy, and nobody cares about it when you go through security.
Oh, it's not a liquidator. Yeah. Yeah. Yeah. Right.
Yeah. And then when I started listening to to your podcast, I I did it chronologically at the beginning. In one of the first episodes, you talk about, you know, carrying juice boxes into the airport and how complicated it can get, you know, to to get that through airport security. And I thought, ah, see, should have taken those glucose tablets. But, of course, that's very different when you have a little child
Yeah.
Versus a grown adult.
She didn't love those tablets. I don't I don't know that I I'll be honest with you. I think Arden's had diabetes for twenty years now. I don't think she's had two glucose tablets in her life. No.
Yeah. So she just never like, she she tried one once and was like, oh, not this thing. And then we had to find something different. That's how we got to the juice and how we got to, you know, the other things that we ended up doing.
Yeah. She's Like I said, that age, you just use whatever is working. Right? Oh, sure. There's no choice involved.
Yeah.
Have I have definitely opened up a small container full of juice boxes at the, you know, at the TSA and been like, look. I have to get these on the on the plane. Like, this is the only thing I know for sure is gonna get me through this flight if something goes wrong. Then they swab it to make sure it's not an explosive. It's a lot of fun, really.
Glucose tabs through security56:11
Yeah. They don't make you drink one, but, you know, I'm always surprised that one said open one up and drink it. I was was waiting for that, especially because, you know, not for nothing, but Arden was diagnosed in 2006. And, you know, the nine eleven thing was pretty fresh in people's heads. Yeah.
Close enough to 2000. You know what I mean? So Yep. Yeah. It was different going to the airport back then for and it you know, for a while.
I think overall, but my experience with, you know, TSA people or security people at airports has been mostly positive. Yeah. I was surprised how very little they care about the needles. So in in the past, I really cared, you know, a lot of needle tips or or syringes with needles. And I don't know whether they just didn't see them because they're so tiny over the you know, they didn't care.
But I was very rarely asked about what this is. Why do I carry this? And in the past, I had these, you know, documentations from my doctor translated into various languages. You saw it the Abednego, but nobody cared. Nobody ever cared about it.
So eventually, I just left it.
Christian, I listen. I'm a proponent of this idea. If you're gonna shoplift, just pick it up and walk out the door. Because once you start hiding and acting nervous, then people are like, what's going on over there? If you just act like you're supposed to be there, you'd be surprised how hard it is to get people to look up.
Like I think that's good advice for many situations in life. Sure enough. Just act like you're you should be there and people will accept it.
Act like you belong. Nobody's asking a lot of questions. Nobody's paying attention, really. I I'm I am incredibly interested in people. And even when I'm out in public, I am paying attention to my wife once said to me, she's like, do you look at every car that drives past us?
And I was like, yes. I assess every individual in every car that drives past us. And she's like, why? I'm like, I don't know. I just like to see people.
And so I look around a lot. If I'm walking through a parking lot, I look at everybody. I walk into the grocery store. I figure out what I try to imagine what people are thinking, what they're doing. Like, I don't know why.
That's a hobby. Whatever. But all I can tell you is with all that research, I'll make quotes around that. What I can tell you is no one else notices I'm doing it. No one's looking
That's interesting.
For the most part. People are people are in a bubble that is pretty close to them. They have their they're locked in their own thoughts. They have their own anxieties, their own schedules. They own they're they're worried about they're walking through the grocery store thinking, I think I think she's cheating on me.
Like, you know what I mean? Like, they're the the people are having those lives right there. They're not looking up very often. Anyway, if you wanna
still That's what I like about traveling because it gets you a different perspective. I I kinda tend to look more at these details when I'm in an environment that I'm not used to
Mhmm.
Because you're less on autopilot. Yeah. So my wife and I, in the last thirty years, we've been to so many places that sometimes we just, you know, sit on a square somewhere and look at people, and you get exactly these reactions. Right? And sometimes you can make up the stories about people saying, oh, look at him.
Yeah. He looks like he's they're just coming back from his mistress, now hiding. I love doing fun as well.
First of all, nine times out of 10, when you actually can make eye contact with somebody, they're thrilled for it. People light right up. They smile. Their eyes brighten up immediately when they make eye contact with another person. Almost always.
Once in a while, someone looks at you like, alright, creep. But that's not what's you know what I mean? But but, you know
Yeah. You don't wanna be that creep.
Yeah. Yeah. You know, you just you just said, like, you made me think of there's a game we my family plays in restaurants where we look around and try to we choose people like we're drafting them to be trapped on a desert island with them. It's like kind of like who would who would you wanna take with you? And then you try to, like, say why you think just from looking at the person.
It's a lot of fun. I don't think we've ever probably been right about one person, but it doesn't stop it from being fun. My question to you though is you said you wanted to go to America to experience the American way of life. I wondered if you could can you quantify what that means? How is it different than where you grew up or other places you've been, or is it not?
It's probably less different once you arrive. But at the time, you know, growing up in the eighties in in Germany, the The US was like the holy land. This this is where you had the genes and Coca Cola and opportunity. And both my parents spoke so fondly about their time there. And for me, it was always a place I wanted to visit.
And I think in 1993 or 1994, we had a longer summer break where we as a family went to The US together. We traveled from Kansas City to San Francisco by car over three weeks across many, many different states and beautiful different reserves. We saw the the different locations, and I really enjoyed that. And I just wanted to go back for a longer time.
Yeah. Is it really any different? Like, could I not drive across Germany and have the same feeling that I have driving across America, or is it is there a lot of different landscape here?
The US is so vast. I think you have all the landscape, which just depends on where you are. Yeah. But I I think, you know, it can be quite different. So I don't think it's the landscape.
It's, you know, when you come from Europe, you're stunned by the size. You're stunned by going into the Walmart. You're stunned by the school size. It's all so much bigger. And at the time, this was exciting for me.
And of course, learning a language, that was really exciting for me. And getting to know new people, and it's it's also part of growing up, you know, spending time away from your family. That was all really cool.
Yeah. That's awesome. I saw scope is really the biggest part. That just everything just feels bigger and more spread out?
That that is certainly one aspect. Yeah. Even now when I come back, I still travel to The US maybe once a year. And and and just the the scope of the continent and everything that is inside The United States, know, including all the pros and cons, I think is is such an amazing amalgamation. You can be in the middle of nowhere, the next neighbor is a 150 miles away, or you can be in a skyscraper in the city of millions.
Yeah.
And it's all it's all one country, and I always found that amazing.
Are the people do you find are people just people? Like, because you said you've you've lived in a number of different countries. I mean, obviously, like, the the bits and the bobs are different. Right? But, like, at their core, people pretty similar?
I think so. Most of the people I've met on my travels have been kind, have been genuine, have been helpful. You know, of course, I've I've I've met some thieves on the way as well, so not everything is great. But both of the people are are good people regardless of where they are. And, you know, how they present and and what they do is different.
Yeah. I get to meet a lot of people, and I have to say, I I don't I just don't think that I don't think we're all very different, you know, and in a good way, in in a in a way that's comforting, to be perfectly honest. So yeah. Well, I know you have to go get your kids, so I don't wanna keep you too much longer. So this is where I'll ask you if there's anything we haven't talked about that we should have because I don't wanna cheat you for what you wanted to come on.
You seemed really excited when we logged on to do this, so I I appreciate that.
I still am.
Oh, oh, good. You're you're having a good time?
Yeah. Definitely.
Awesome. How long ago did you find the podcast?
I think around four years ago, 2021 Mhmm. I found the podcast. Yeah. It was was during the the COVID shutdown. And I just, you know, was looking for an additional resource to learn more about diabetes.
And when when I started listening to it, I think that the first kind of nugget that I picked up was around protein and fat. Okay. And what what was so interesting for me was when I was diagnosed back when I was 13 in the hospital, they told me about what they called the pizza effect. And the pizza effect is basically protein and fat, right? You need less insulin at the beginning and then you need more later on.
And I learned this and I knew how to handle pizza, but I never once thought about transferring this to other foods. For me, this was purely about pizza.
That's interesting.
It's it's really weird. Right? I never made the transfer. And surely, the doctor said, you know, I've taught them about the pizza effect. They'll be set up for life.
They know how to manage protein and fat, and it took me thirty years to figure it out listening to your podcast. So that was really interesting.
They just needed to call it something slightly different. You would have been right on board.
Maybe. Maybe. The label pizza effect sort of narrowed it down in my mind. Yeah. And that's that's, you know, maybe what happens when you talk to a 13 year old.
Listen. Not for nothing. Like, somebody handed me NovoLog and said this is insulin, and I never wondered if there was another insulin. I just I just assumed this was insulin. They gave it to me.
They called it insulin, and why would they, you know, why would there be others if this one works? It just little little simple things like that, but put you, again, on a path and you don't think about it again, and you look up however long later and somebody's saying to me, you know, have you ever tried a Pedra? And I was like, what's a Pedra? And they're like, what's it's insulin. I was like, well, there's I have insulin.
I have NovoLog. You you know? And they were like, no. There's this one too. I'm like, oh, how would I know that?
You know? So it's good news.
Insulin isn't that fragile1:05:53
I wanted to talk a little bit about what I learned from traveling. Please. Maybe pass on some some good ideas there as well. And the first one is really basic, and that's take enough supplies, which should be obvious to everybody who's travelling with type one, but also know that insulin is much more resilient than what pharmacies want us to believe. You know, when we pick up the insulin, it's always super chilled and they ask you, do you know how do you know how to get home with that?
You know, can you cool it on the way? And that gives you the impression that it's super fragile and one ray of sunshine will destroy the insulin. And that's just not the case. I mean, is being used across the world, you know, many places much hotter than ours. And insulin has fairly good shelf life.
So as long as you can keep it cool on room temperature level, you will be fine. And I I've been in the situation, you know, where it got warm and I got really nervous. Is it still viable? And I read other people's messages saying, you know, it's it's stayed out in the open for five days on the table. Do I need to throw it away?
And the answer to that is no. You know, you can really keep keep using it, and that can help you when you're traveling.
There are some studies just about that that I have to admit I I'd like to maybe dig into more to tell people about because you're not wrong. A lot of times, people freak out. And then the minute they have an experience where their blood sugar doesn't do the thing that they want to do, they they'll they'll they'll leap over 20 possibilities and go right to my insulin must be bad. And that's Yep. What a what what a weird leap.
You you know? But not if you were told because or what happens right away? You have to keep this cool. Well, I just put it in my insulin pump, and my insulin pump's outside with me, and it's not cool outside. How and
Still working.
It's still working. Something's you know?
How about that?
Yeah. Hello. Yep. And then and then like you said, they leave it on a table for a day, and they go, this must be bad. It's really interesting.
Yeah. Oh, well, I'm gonna dig into that more. I'm glad you brought that up. What what what else you got?
So so the insulin doesn't have to be super cool, but I think it helps a lot if you stay cool in the TSA line. Because if if I am stressed standing in the line, they get stressed. And I've been there myself. You sit there and say, oh, now they're gonna pat me down and what do I tell them and how do I say it to them? And most of the time, if if you're relaxed, when your kids are relaxed, it goes so much more smoothly.
And if they need to check you physically, my go to approach is always to just tell them upfront, I have this pump here. I have CGM there. And then they're usually super careful and very friendly. If I just walk up to them and stare at them in the mean face, they might accidentally rip it off. So just, you know, thinking about that while you stand in line.
I know it can be very stressful. That at least helps me, you know, preparing for that encounter.
Yeah. It'll be fine. It is it should be your take away.
In most cases, that that's it. Right? Yeah. And when you read about, what people write on your Facebook page, flying wreaks all sorts of havoc for diabetics, right? Some go high every time, others go low every time.
And we try to explain it and find justification like you just said, right? We lead directly to this must be it. The scanner destroyed my CGM. You know, the pump pushes more insulin during the flight. So even though cause and effect is not clear and all, we want to have that cause and effect very clear in our mind because it gives us comfort.
And
I really think, you know, traveling can be very stressful and stress messes up our glucose levels. And that's probably the reason for most of what we see when we travel. And I've changed CGMs and Omnipods at the airport mid flight. I've I've gone through all the different machines without any problems. Maybe I was lucky.
But I also think both of them don't cause any problems with your machines. There could be a correlation somewhere. You walk out of it and then, you know, you knock your arm and then it falls off. Yes. That happens.
But it's not everybody who goes through a machine will have a problem.
Yeah. Expect good things and often good things will happen. Yeah.
That's right.
You could just go read a stoicism book if you want and just try to apply it to your life or, you know, T shirts, slogans, or whatever makes you feel more comfortable. But in the end, it's probably gonna be okay. And chill out. I that's so far so far I've heard
you say usually not as easy as that, but that's the gist.
Yeah. But that's the gist. You have to find listen. You gotta find your way to that, whatever that is for you. But in the end, I take your point.
You know? First of all, if you look nervous, they're gonna wonder what's going on. It's their job to find people trying to sneak through doing stuff. There's also plenty of people doing things you don't realize, so now you've suddenly put yourself in the bucket with those people. Do you have any idea how many people try to bring a gun onto an airplane every day?
It's an astonishing number.
Probably more where you are than where I Yeah.
Well, it's an astonishing number. And often, it's they're mispacked. Like, people will, like, have them in bags and not realize it and stuff like that. So that person that person at that gate is thinking about that while you're there while you're there going, I hope I hope they don't care that I have a juice box in my purse.
Yeah. We got that with knives.
Yeah. Oh, yeah.
People tend to find knives in their suitcases or in their backpacks all of a sudden.
Oh, yeah. Society There
it is.
Societies that can't shoot each other love to stab each other. Exactly. Go ahead. What else you got?
Once you step on the plane1:11:35
So when it when it comes to flying, especially long haul, my mindset is always once you step on the plane, the new time zone has started. And my experience is the sooner you act like it, the faster your body will adjust to it.
Oh, what a simple What a simple smart idea. I'm cutting you off, but what a simple smart idea. Go ahead. Go, please. Yeah.
So
if if you're on MDI, you know, if you're going west, the day gets longer, add a second shot, long acting, maybe half of your normal dose or whatever you may need at the beginning of the flight. And if you go east, shorter days, which are often overnight, now give that long acting early and then align onto new new time zone. And that way, your your body can start. Of course, it's not that easy. Right?
The the body will still take some time to react to it. But my experience is when you get ready from the get go, it takes less time.
Is there a way to lie to your pump about what time it is to get ahead?
Well, with my pump, I can just change it on the phone. Yeah. The time on the phone, you know, change the time zone to Australia or wherever you wanna go, and that works.
Just like that. Well, that's such a brilliant thing. How long did it take you to figure that out? Is it like a day where you're like, oh, you know what I could do? And then you started doing it?
Yeah. I I think I think fairly quickly. I think first time when I came back from The US when when I was 16, 17, I remember being up all night before traveling back because I was so excited and saying farewell to my friends. And then I figured, oh, it's you know, it's it's early morning here in The US. I'll probably fall asleep on the flight anyway.
So this will just be my nighttime. And then I flew back to to Germany. And I woke up in the morning and that worked well for me. The only exception to that rule for me is if it's a short trip. So sometimes you just have to go somewhere, you know, for a day or two, then best to stay on your local time and not adjust at all.
Yeah. That that might be easier.
Travel is I mean, I won't say hard on the system, but it is obviously impactful. You know, people's bathroom habits, like, you know, eating habits, sleeping styles, a lot is impacted very, very quickly.
Yeah. And some people are impacted much stronger than others. My wife, she can travel all over the place and she's usually fine within twenty four hours. It takes me longer. We have other friends who are knocked out for a week when they do long haul travel because it's so exhausting for them.
Yeah. No. No. For sure. Absolutely.
What else? Anything? You have a lot of good stuff here.
No problem. Thank you. Let me just have a quick look here. Just anecdotally, I think for people traveling to Europe, if you lose your gear and it does happen, it has happened to me before, it's been stolen, I lost it, I dropped it most pharmacies will help you out with the gear, but they struggle with insulin because that's regulated. It's a medication.
So depending on which country, easier or more difficult. Here in Switzerland, they have a very neat system where you can basically self declare that you need it. You fill out a form, you pay for it out of pocket, and then you have it. That's very neat. And Europe goes into that direction.
So in more and more countries, you know, with a sympathetic pharmacist, they will help you out. They'll give you the incident at least to cover you for the next couple of days, and then in that time, you can figure out your emergency plan. So that works really well now.
Okay. Oh, that's awesome. It used to be like that here. Because when when my friend was first diagnosed, like, I I real I remember him saying you don't you didn't need a prescription for the insulin. You needed it for the needles.
Yeah. Yeah. It's how it was at one point.
Interesting. Yeah. So the the the the most important and the least important part. Yeah.
Exactly. Oh, one without the other is pretty useless. I guess they figured it's funny because you said the TSA people kinda don't care about the needles. Like, I think the only damage you can do with an insulin needle is if you're a bullseye from the Daredevil comics. I mean, if you're not if if right.
If you don't if you if you
don't kinda have that kind of accuracy, I don't know how you're gonna hurt anybody too badly with an insulin needle.
So I don't know. If you you have 10 or so in your hand, I think you can wreak some havoc.
You gotta really go for it though, Christian. You know what I mean? Like, you're gonna you have to be on a mission, I guess. Yeah. Yeah.
I take your point.
That's true.
That's funny. Yeah. Well, I mean, it's it's encouraging to hear somebody that moves around so freely on planes and through time zones and country to country. And you've never had a problem to to speak of?
I did have problems, of course. Once I I lost my gear right at the beginning of a flight, and I was traveling through Hong Kong Airport and sort of all all my testing equipment, I left on the seat. I walked out of the aircraft and right when I was in the departure or in the arrivals hall, I realized. And the only way you can get into the airport is with a ticket. And I was trying to talk to this gentleman, you know, with a big gun at the entrance.
Please let me through. He only spoke one sentence in English, which was show me the ticket. So eventually, I just showed him a ticket from a departure a few days later. And he looked at us, oh, ticket. Great.
He let me in, and I could recover it. But but, you know, you lose things. Things break. A few years back when I was on my first Omnipod summer vacation, I cracked half of my pods because I didn't realize that aerosols would impact the material. And then, of course, you wonder what are you doing.
So I went back to MDI for a couple of weeks until we got back home. So these things happen. But I was always lucky enough to to feel comfortable enough to not have it stress me out.
Yeah. And you brought you brought a lot of I'm a I'm a I'm
a I extra supplies.
I bring extra. Yeah. I I joke all the time. Like, if you vacation with us, I could probably handle two or three more people with diabetes if I needed to. But I'd rather just carry a because in the end too, it's know, Omnipod, there's not a lot of stuff.
There's no, like, you know, infusion sets and tubing. It's just pretty small packaging. So you can carry Exactly. You know, you bring Yeah.
If you take it out, it's easy.
Yeah. You bring 10 pods with you and everything goes right. You've got a month's worth of pods with you.
So Yeah. And I usually put them into the That's where they can stay.
That's a good idea. I and I always do the thing I heard you say earlier too is I carry stuff on. I carry enough on that if things got sideways, we'd be alright for a few days, and then I pack the rest and carry on. And that way, I have it in two different places. Well.
Yeah. Yeah. There's you know, I take some insulin with me. I put some insulin in the carry on in in the, you know, in whatever gets in the belly of the plane, try to put that on ice. Nobody cares if there's ice in your checked bag.
Like, there's, you know, like, a lot of little, like, things you can do. So, anyway, it's it's it's in the end, I'm just gonna tell you something that is not gonna be completely comforting to anybody. It's just not that hard. Like, just go do it. Like, you're you're gonna mostly, I see people online create their own problems.
I went on vacation. I only brought one CGM with me. Why is that? Like,
go Yeah. Those those posts are scary because you feel okay. A little bit of planning, but, you know, life can be so difficult sometimes and things happen. So
Yeah. Just ask yourself. I've brought one. What if this one fails or I lose it? Maybe I should have two.
That's true.
Yeah. Yeah. Like that very simple idea. I I would never even on a day trip, if you're gonna bring an extra pod, you're bringing two. Because if it's important enough to have, it's important enough to have a backup in case something should happen to the first one.
And Yeah. And I think most people feel, you know, if if if you cannot go back readily to your home, you know, just just take a spare.
Have some stuff with you. Fine. Yeah. Yeah. I just I yeah.
I hate to say apply common sense, but apply common sense to it. Then go have a good time and travel. I mean, listen. Would I go to a would I go to a war torn country where no one speaks my language and I'm not sure about my safety? Maybe not.
You you
know take at least three pots. I would
You're saying take just take a few more pots. You'll be fine. Hide them in your parents. It'll be okay. Oh my god.
Christian,
you're So my my watch is beeping reminding me that I need to pick up my daughter. Be be before we sign off, I just wanted to say great work hosting the Juice Pod podcast.
Thank you.
It has given me a lot and your work really makes a huge difference and I really appreciate it.
Well, thank you so much. I I can't tell you how how much that's gonna make my whole day brighter. It really is terrific to know that that it's valuable for you and that it's finding its way out of America too is really is fantastic. I, I try not to talk about it too much, but I am super proud. I think I think the podcast charts in usually 35 to 40 other countries every day.
No. It's amazing. Yeah. And you're rightfully proud. I think it's it's really amazing what you've built.
Thank you so much, Christian. I really appreciate your time, and, you know, go ahead and get your kids. I don't want you to I last you thing need is to have this lovely afternoon and then go get yelled at for being late.
So Thank you for your time.
Thank you so much.
Great
day. You too. Take care.
Care. Bye.
Bye. To learn more and see if you might be able to get Twist from the pharmacy and try it for free, head to visit.twist.com/juicebox. That's visit.twist.com/juicebox, or give them a call at 18774. That's +1 (877) 489-4478 and tell them Scott sent you. TWIST requires prescription and is indicated for people with type one diabetes six and older.
Arden has been getting her diabetes supplies from US Med for years. You can as well. Usmed.com/juicebox or call (888) 721-1514. Many thanks to US Med for sponsoring this episode and for being and for being longtime sponsors of the juice box podcast. There are links in the show notes and links at juiceboxpodcast.com to US Med, Twist, and today's other awesome sponsor, the Eversense CGM.
They make, of course, the Eversense three sixty five, and that thing lasts an entire year. One insertion every year. Come on. You probably feel like I'm messing with you, but I'm not. Ever since cgm.com/juicebox.
Check it out. Let's face it. Diabetes is tough, but it's easier when you have a community around you. So if you're looking for a great community around type one diabetes, check out the juice box podcast private Facebook group. Juice box podcast type one diabetes, but everyone's 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 the juice box podcast private Facebook group. Juice box podcast, type one diabetes on Facebook. I promise you it is the most un Facebook like experience that you'll ever ever find. What a great group of people.
I don't like saying this usually because it dates the ad, but right now there are 86,000 active members. 86,000 people in there who might have your experience, know what to say, just be a great shoulder to lean on. Don't be too proud to find a community. It really does help. And it's completely free.
Juicebox podcast, type one diabetes on Facebook. I just wanna say thank you so much for listening. I'll be back very soon with another episode of the juice box podcast. If you're not subscribed, please subscribe in a podcast app. It really helps Apple Podcasts, Spotify, or whatever your favorite audio app is.
Like and subscribe. You know what the kids say on the YouTube, like and subscribe. It really does help. And if you're already subscribed, please tell a friend or your endo or somebody you think might enjoy the podcast as well. Word-of-mouth is the only way that it grows.
Once again, I've been Scott. You've been fantastic, and we'll be right back with another episode of the juice box podcast.
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