#302 Waxing, Waning & Hulk Hogan's Dragon

Stacey and her daughter's type 1 diabetes story is fascinating and revelatory.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello, everybody, welcome to Episode 302 of the Juicebox Podcast. Today's show is sponsored by touched by type one. And their mission is to elevate awareness of type one diabetes, raise funds to find a cure and inspire those with diabetes to thrive, you know touched by type one, they've just recently changed their name. They used to be dancing for diabetes, check them out at touched by type one.org. And if you're in the market for a blood glucose meter, I mean a really great blood glucose meter, head over to Contour Next one.com. See, if you're eligible for an absolutely free meter by clicking that button right at the top of the screen. And to get ardens Dexcom g six, you're gonna hear a lot about the Dexcom. And there's a great story at the end of this one. you'll, you'll see, I don't want to like spill the beans. But if you want to get a Dexcom g six continuous glucose monitor, find out more about it. Definitely head over to dexcom.com Ford slash juice box. There are links to all the sponsors right there in the show notes of your podcast player. Or of course, you can find them at Juicebox podcast.com. So much happened in this episode that I don't even know how to bundle it up and like a little descriptive nugget for you. I'm sorry. Just know that Stacy's gonna come on and talk about her daughter's diabetes. At some point, we're going to talk about looping, some algorithm based pumping, we're going to talk about a crazy, almost emergency slash emergency that Stacy's daughter had an epiphany, there's just it's hard to my notes here are just, I don't know how to make sense of them. Here's what I would tell you. I'd listened to the show. If I was you, I would listen to the whole thing straight through. And I think you're gonna enjoy it. Like I said, the story at the end is bananas. I'm gonna call this 1am I gonna call this one Hulk Hogan's dragon. And might for waxing waning and Hulk Hogan's dragon. No. No, it might just be Hulk Hogan's dragon. Now, or, I don't know, it's gonna be a game time decision, when I type it in. Just know this. Nothing you hear that Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. And a little a little tag here, let me say this, this will be one of a couple of episodes coming up in short order, where I start talking about looping a little bit, I want you to remember that this one and the next one for certain, I was nowhere near where I am now with algorithm based pumping. So you're gonna hear me still figuring things out and saying things that are a little seems like I'm confused. And I'm still getting to it, which I was when this happened. And I want you to hear the you know, the build from the last two looping episodes through this one and the next one you're going to hear, I want you to hear the whole thing that how it went for me. Also know that there's another version of the app that we're using now that we weren't using, then there gonna be some sort of issues that you hear me talk through that kind of don't exist to that degree anymore. And spoilers. Even though I'm going to sound completely confused, not so much in this episode is I'm going to sound in the next looping episode that you hear. But it all works out. Things are going really well. I just think there's a ton of value in you hearing the journey, so that you might know what to expect if the time comes when you make the decision to try an algorithm based pump. Alright, that's all I got for you. We don't put the ads up front. You'll hear them pretty soon, and then it's gonna be straight through shot right to the crazy story at the end.

Stacy 4:02
I'm Stacy Dylan, and I'm a mom of three. And I have type one diabetic named Riley, who's 14. And we randomly finally wholeheartedly bumped into the juice box, juice box podcast, and now we're forever believers.

Scott Benner 4:24
Well, that's excellent. How long ago was Riley diagnosed?

Stacy 4:28
So Robbie was diagnosed in 2007. She was just shy of her third birthday. And the day that it became most evident happened to be Valentine's Day. So she was diagnosed on the 15th. But the 14th was a really traumatic part day. So it's 1005 2007

Scott Benner 4:51
seven. Excuse me. I don't know I do that. Sometimes I can. I did the math off of Arden's birthday and I meant to do the math off of artists. diagnosis date. So you are just literally like a year and a few months behind us.

Stacy 5:04
just shy. And it's so funny because when we first started listening, I had to like, figure out how old she was art. And that is, because I hear you say things. And I'm like, Are you sure? Are you sure that's the age she is because I've got a girl that age. And that is not how it's going for us. So, and then it's just been interesting. I know, by the time this goes up, it will be a different time. But the stuff that I've been currently listening to, I'm definitely seeing changes in your day to day with Arden that are where we were before. So it's kind of interesting, the age and the body and how all that stuff works.

Scott Benner 5:42
Yeah, no kidding. There's, um, there's a year in there, where things make a giant shift. So you were it's, that's so interesting. So you're listening behind a little bit like you're finding the podcasts, and you're kind of just catching up. And on top of that, I record fairly far out into the future waffling. Right. So I'm talking about something that's happening. And it may be happened in January, you're not listening to it till June. But and in that short gap of time Arden went from like 13, a little kid to 14, not a little kid, and everything kind of shifts so quickly.

Stacy 6:18
Well, which is what what I'm so excited about. And you know, from the minute that we listened, which we'll probably get into, but we had like a serious major life transformation, which happened with the change of the way we were handling diabetes. And as we were sort of going through that stuff. I like excited to see like, okay, what's going on with them? How are they doing it, because it has been so close to us. And when we had just recently a couple of we were like, on the path on the path, and we had a couple of hiccups. And I was like, Okay, that's it, I need to talk to Scott. And instead of like trying to connect with him offline, I want to do it on the podcast, so that we can potentially help other teams, because I think a lot of the information that you give is great, but how does it work in each individual person's sort of makeup in life, and because our life is, you know, kind of the same equation, it's interesting to see how you might give advice, you know, pretty close to the range of the same kind of kid, you know, girl, tween teen body, changing all that kind of stuff.

Scott Benner 7:27
And of course, they see nothing you hear on the Juicebox Podcast, his advice, but I will discuss with you.

Stacy 7:34
Whatever you want from there. That's one of our funniest things around the house, we are often quoting that, we'll be saying something and then everyone will stop. And we'll say, but of course, this is not advice, please consult your physician.

Scott Benner 7:46
Well, you know what's funny, anyone who's ever spoken to me privately will know that I start the phone call by saying hi, you know, I'm happy to talk to you just please understand that, you know, I'm not an entity, I'm not a company, I'm a person. I'm not a doctor, if I say anything on this phone call, when I'm describing how my daughter's care goes, and you decide to put that into your life, and you or your kid dies, it's not my problem. And don't call me back or disclaimer on the pot.

Stacy 8:16
Well, but the thing is, is that it really is true. And one of the things that has hit me so hard from hearing and listening to other people's stories is that I truly believe the reason that we are in this sort of holding pattern of how they're training people to care for this disease is that they are doctors, and they're not willing to be bold, because they can't. And it really is detrimental to the long term health of someone if you don't really have all the information. So while you're not giving us advice, sharing your story, and giving a vehicle for others to share their story is just sort of monumental in the shift. So thank you for that.

I appreciate you saying that. And you're very welcome. I would tell you that stuff happens behind the scenes, you'd be so amazed by like, there are people whose jobs it is to go around and talk to collections of doctors to try to talk them into giving people with diabetes, better advice. And and it does. Listen, I don't know if it does or doesn't, but I definitely you know, you hear me say it all the time. Like I definitely think some of it is fear. I think some of it is they don't want to be on the hook if it goes wrong. And I think some of it is they don't know. Or maybe a mixture of that. Or, you know, one thing for one doctrine one for different one. I definitely

Stacy 9:35
definitely. Yeah, it is a combo. It is a combo because there's no way that's the thing about diabetes. It's not ever one single thing. It's everything.

Scott Benner 9:43
Yeah. I mean, you hear the stories from people who, you know, get threatened, even, like, you know, hey, I you know, I corrected a 300 number. My doctor told me that we're gonna call typhus. I mean, I'm imagine that, you know, I would have been like I'm gonna call typhus on you. What do you think of that? Dancing for diabetes is now touched by type one, check them out at touched by type one.org. To find out why, all you got to do is scroll down a little bit, you'll see Elizabeth forest right there. She's the President and the founder of touched by type one, she's going to explain the whole thing to you.

Stacy 10:20
I can't even I can't even write. Well, you know, as I was driving late, of course, from my house with the barking dog to my office, so I could have a quiet place. I said to my husband. You know, the thing about doing this podcast today, as I remember the first email that we got after diagnosis from someone that we knew from someone but not really, and the words that were in that that email at the time, I said, you know, if I ever have an opportunity, and you know, of course, I pray I never do. But when that is presented to me, I will Forever and always share our story. From that very minute, even though I didn't really know what that meant. Because it is in sharing the stories of what your true life is dealing with type one that is helpful to other people good, bad or indifferent. I

Scott Benner 11:09
think it has to be I listen, I did something the other night that I was scared as I was doing it. And I still thought I don't know how in good conscience, I wouldn't have this conversation with this person, even though I don't know them. And their situation seems incredibly dire and a little scary. I just didn't know how to say no to them. It just seemed it seemed wrong. You know.

Stacy 11:31
I just gonna say and that's the thing is, you know, you you, you think about the people who are not able to make the changes and are just struggling along, which is again, what really pushed me to send the email to say, Okay, now I know what I want to talk about, because I try and share the story with other people. And what I hear back from them, sometimes I'm like, Well, I can see why you might not want to do this right, or I can see where you're at.

Unknown Speaker 11:57
And that's got to be challenging to be stuck.

Scott Benner 12:00
It is. Okay, so let's um, stick about where we want to jump in based on what you are thinking about saying I think we're gonna go with, explain to me what your days were like with diabetes, prior to finding the podcast. Let's jump right in and talk about the Contour. Next One blood glucose meter. This is the meter Arden has been using for a while now is beautiful, tiny, but not too small, you know, you can still hold it, it's got a light. So you can see while you're texting in the dark, it comes with a little guy got a little Bluetooth inside of there, which lets it talk to your phone. Now you can use the meter without the phone. But if you want to download the contour diabetes app, well, then you're going to add a ton of functionality. And it's going to be really simple to use. Because the meter is Bluetooth enabled, you're going to test on the meter, it's going to show up on the app, that's pretty easy. You'll be able to integrate your blood glucose meter with your smartphone app. This is going to help you simplify the management your diabetes, are you picking up what I'm putting down here? You ever go check him out Contour Next one.com. There's links in the show notes. I prefer if you clicked on that. But if you want to type it in the browser, I can't stop you. When you get there, there's going to be a little yellow thing at the top of the screen, I guess you'd call it a button. It says get a free Contour Next One meter, but there's like a little mark next to it, which I think means not everybody's eligible. But I don't know who is and who isn't. It's worth checking out. So let's not forget the Contour. Next One meter super accurate, easy to use. Nice, feels good in your hand. They've got an app that goes with it. And that app is available at the Google Play Store or at the App Store for iPhone. Contour Next one.com check it out. It really is the best meter Arden has ever used. And while we're talking about the best blood glucose meter Arden's ever used, might as well tell you about that greatest continuous glucose monitor on the face of this planet. That's the dexcom g six continuous glucose monitor. This one's easy. dexcom.com forward slash juice box there's links in the show notes. But anyway you get there. Yes, get there. Because when you do, what you're gonna find is that you can have glucose readings right on your smart device again, iPhone or Android. Not only that, but the Dexcom g six CGM is FDA permitted to make diabetes treatment decisions without a conformational fingerstick or calibration right there's like a little thing here says if you have glucose alerts and readings from the G six do not match that so you'll read it when you get there's a whole bunch going on. Okay, customizable alerts and alarms. That means find out when your blood sugar is rising and falling. you'll actually be able to see how fast it's moving and in what direction this is invaluable information to make decisions about your insulin. If you don't think that's true, wait till you hear the story at the end of this episode. Okay, well Dexcom is the only provider of CGM Systems that's indicated for children ages two years or older. And you can share your data with up to 10. followers. Really think about what that means for a second, you as an adult living with type one, or your child, as a younger person can be wearing the Dexcom g six CGM, that information from the Dexcom can go into your smartphone up to the internet world and come back down to 10 people up to 10 people of your choosing. Those are people who love you who can see the direction and speed and level of your blood sugar. I don't know what you're doing still listening, you should already be@dexcom.com forward slash juicebox. But you're probably torn right? You're like Scott said, there's a big story at the end. But I want to get to Dexcom. And I'm gonna grab Contour Next One meters a lot. I know what you're thinking, how do you decide? Let's get back to the show now and cruise right through to the end. uninterrupted.

Stacy 15:59
I was a late adopter to podcast and I the first podcast that I went to look for was a diabetic podcast because I thought well, what is something that I could benefit from in life that is every day every minute, so I looked for one, and I subscribed and then I never listened because I think I didn't know how and whatever. So for the next I guess, year and a half, we were in burnout mode. Riley is an amazing child, she is good grades well behaved. Everything that you could, you know, pray for a child and a type one diabetic child on top of that. But we were tired, you know, almost 11 years. And at that point, the day to day, she was solidly taking care of things with the pump herself. We have Dexcom cheese six, but it was just really mundane. And it was something that I feel like we weren't giving the right kind of energy to we were fighting. Every time there was a change needed to happen. It just it was just getting really I don't know how to say other than crappy just was. And I felt like that negativity was then putting negativity into her soul and spirit that type one already does. And then here I am shoving it in. And I felt like we were lost.

Scott Benner 17:25
Just chasing all the time never

Stacy 17:28
chasing and like, you know, you go we would go to our endo appointments. And we were rockstars like we do we you know, we have the information for them. You know, we're we're actively managing it her a one C was I want to say mostly between 7.5 and seven, eight. There was right when she started puberty we hit I think 8.1 for one appointment. But according to what they were telling us we were rocking it out. I felt like we weren't because of the fighting and the drama. And it just seemed like it could be easier. And but what they were telling us we were doing fine. I would say her average blood sugar was, you know, more felt like 170 was, you know, Alright, we're doing okay, and if we hit a 250 was like no big deal. Where now if we hit a 170 I'm like, what's going on? You know,

Scott Benner 18:26
Pre-Bolus we messed this up so badly. Let's figure it out.

Stacy 18:31
And it's just so funny, because, you know, I was with someone the other day and texting another TNT mom, and I was telling her to correct a 123. And she's like, you're correcting a 123? I'm like, yeah, cuz See that little dot right there. That one is above that one. And in a minute, that's going to be 136. And that was blowing her mind. Good for you.

Scott Benner 18:52
That's excellent. I love that. You guys are all sort of doing your own version of the podcast out in the real world. When you're talking to other people. It's

Stacy 19:00
Oh, and of course I mess it all up. And like for the longest time, I was listening to one of the podcasts and I was like, what are they even talking about? And it was injection. But the MDI, like, I didn't even know what that was. And like, there's so much diabetic stuff that I just, we don't pay attention to it in that way. And I think that's one of the things that the podcast is also brought is that the community of hearing other people's stories has been really what,

Scott Benner 19:29
what's helped us to, it's excellent, actually, you just made me figure something. So I am right now building a running list of definitions that Jenny and I are going to go over on the podcast. I just

Stacy 19:40
love her You guys are such a good

like frickin frac back and forth though. You know, she's able to keep it medical yet easy to understand. And it's just I when I heard those first Come on, I was like, well, this will be interesting and I listened to all of them even if I felt like they weren't like Exactly our, our jam and I've learned so much.

Scott Benner 20:03
I think even the ones that aren't like I tried really hard to say to people, I see this one is MDI, it's about injecting and maybe you don't check. But please listen to it anyway, just because it all builds into a direction. And it's hard to believe in the moment. Probably, it's also hard to believe that I planned anything out.

Stacy 20:22
funny, because they remember what you said, they're like,

Scott Benner 20:26
what are we talking about today? Please, you have no idea. We start talking to each other. I was like, What do you which one do you want to do today, we did them out of order, like whichever ones we felt like wherever we had space and time sometimes. And

Stacy 20:39
that's the authentic pneus of it, too. And what I really tried, when I'm sharing the story now with people is like, just listen to what people are doing, and then see how it fits in your life. And back to that, like, it's it's not advice, you aren't a doctor. But if you can hear what other people doing are doing and see how that might relate. And the small shifts in your realm can have huge results.

Scott Benner 21:02
So important to realize that, it's possible that if I lay out 10 ideas on the podcast, that you may only need six of them, right? Or that one of them may just be counterintuitive to your life or not work for you, it doesn't matter. I'm just telling you that I think if you wrap your head around these ideas, and some of them will help you and help you kind of in big way. So okay, so you're living prior with I think you're living within a one seat before the podcast that I think most people would be pretty thrilled with. Right? Right. And I obviously, it's so much better than what your doctor sees, generally speaking with the people who come into the practice that they don't even look at you and say, hey, maybe you could do a little better than a seven, five, because the person who came in before you had a nine, or a 10, or an 11. And they look at you, and they're like, Oh, this person doesn't, it's almost like being that I'm the kid in your family. And those people who are from bigger families will will get the feeling of this. Like, if you have a few brothers and sisters, and they struggle in school and you don't struggle, your parents ignore you, because they only they only have so much bandwidth to give to the idea of helping children with homework. And they're gonna give it to Billy who can't count the fingers on his hand. Right? Right. Not you who struggling to figure out algebra in seventh grade, you know, so

Stacy 22:20
I feel like there's like something in your chart that needs to ding and be like, okay, they're 10 years in, they're rocking it out. Let's let's put them on the advanced course now. Because quite frankly, I didn't even know there was an advanced course. Right. And so I wouldn't know to ask for it. And the things that we were struggling with, of more, you know, figuring out the tween teen thing and giving her freedom and me also being burnt out in my negativity, those were the things that we were working on, but really hidden inside that was that her blood sugar was high. But we didn't know that because of the charts that they're giving us and what they're, they're telling us.

Scott Benner 23:03
She was good. I'm gonna reference Facebook twice during our conversation today, one and just very vague, you know, generally speaking, I'm not gonna point to focus on something. But I saw a thread the other day where a mother said, I don't care if my kids blood sugar's high, they need to be respectful of me. And then a bunch of people jumped in and started agreeing with her that diabetes wasn't an excuse for poor behavior, which I don't think it is. But it's like no one in the thread understood that your brain becomes altered when your blood sugar is 300. Right? Right, that you're not having reasonable reactions to things, that you're that you're not in control of what you're saying, even though most of you seems completely reasonable, and you there's still, there's still pressures and implications that are coming from that high blood sugar that are changing your reactions to things. It could even be down to like facial text, you know, to when someone says something to you, maybe you let your dis you know, maybe somebody says something to your maybe you say something to your kid when their blood sugar's 300, that they disagree with you about that, mostly, they wouldn't, you know, make a face at you. But now you get the face because they can't hold the face and you get a copy or a sign or you know, you know, the big blown up cheeks or something like that. And now you're like, Hey, don't be disrespectful of me. And your diabetes isn't an excuse and blah, blah, blah, and it's just it's a, it's a bad idea.

Stacy 24:26
It's and then we're 20 minutes in a battle and I'm screaming at the top of my lungs, and you know, she already has it hard enough. And then when that stuff, we're just piling it on higher and deeper,

Scott Benner 24:39
knowing that that anger is probably pushing her blood sugar up and you could you could be getting her blood sugar down during that time, but instead you're just, it really is like for anyone who's married. It really is like when your spouse says something that doesn't matter in the in the bigger picture. And you can just go past it if you want to. But if you just there are times you think Hey, you know what? I'm going to pick a fight right here, right? And you do that. And then like three hours later you think why did I Why did I do that? was stupid you know, but but here we are now we've changed our relationship. we've ignored the real problem. And and we've been a little petulant, honestly, you know, because I'm tired, and you're my kid, and please listen to me, and I can't take this anymore. And, you know, blah, blah, blah. But, but so that my bigger problem was that then people kept coming in and reinforcing it. I don't take that for my kid when their blood sugar's high, like that kept happening. And I thought I wanted so badly to say, Hey, you guys, like, this is not an apples to apples conversation you're having like, this isn't a kid who just stood up in her bedroom and decided to go be in, you know, in a hole in your right ear. That's not what happened. But I stayed out of it. Because talking on Facebook is

Stacy 25:54
the beginning of the end, you're not going anywhere positive

Scott Benner 25:57
out of your mind, if you think you're going to jump into a lake of promise and talk them into not beating your flesh. So I was just like, you know, I'll do it here on the podcast instead.

Stacy 26:06
So I think that that really, though, I mean, is the core of it. For me, for those who I'm trying to share the story with that their teen has been, you know, 254 years. Right? And that personality, or who they are at that 250 has become so strong, that they don't even know that that's not them. And and how do you stick a pin in that and start fresh? I mean, and that probably somewhat leads to how we were able to do it, but like, I just don't even know where to like suggest to them to start on that? I do.

Scott Benner 26:43
Okay, good. basal insulin, right, so that their boluses work better so that they don't have high blood sugar. So that's not who their kid is anymore. But you're so like, you're talking about a 16 year old? Do you go in the night and you go in and you mess with their settings? And you just do it to them? Like, how do you physically do that? I see. So what happens when the kids sort of autonomous has an opinion in their brain that they're 35, and they don't need to listen to you anymore? And they've been 250 forever. So like, they're already there. They're there. They're borderline serial killers. And and now you're gonna go to try to talk them out of stabbing somebody. Right, right. And how do you not get stabbed to me in that conversation?

Stacy 27:30
And that there's two things on that, that make me think of actual, you know, I talked to you in my car when I'm driving along, and or your other podcast, folks? And I'm like, Oh, no, no, no, or Oh, good for you. And it's been like that from the beginning. So my kids make fun of me, because I'm always there, like, Who are you talking to them? I'm talking to Scott, we're working some stuff out here. But I remember there was a woman and her son had been diagnosed 10 months prior. And it was like, I think the second one that I listened to, and I just kept like saying to her, you don't know, I don't know, you don't know, wait until you're 10 years in. And literally something hit me. And I was like, Wait, what? I don't know. Like, it just opened up. And I was like, You know what, I need to listen to her because she's coming at this with a fresh set of eyes.

Scott Benner 28:23
And that was a huge wake up call to me that, you know, why was I getting so upset. And, you know, if someone out there is listening right now that's in the space with a team that's been high, that maybe they can just take a step back from it and look at it from a different direction. It's you can get stuck in a rut. And I'll tell you, it happens to me too in my life. But this podcast allows me to step back, right. Like, I get to have a wider view while I'm speaking to somebody and it's just as cliched as a thing to say. But, you know, if you hold your hand right in front of your face, you can't see as much of it as even hold it three feet away. And, you know, you just sometimes you get so super focused on what's right in front of your nose that you lose sight of the big picture. My kids yelling at me, I'm yelling at her. This is a problem. She doesn't listen, bla bla bla, well, move your hand away two more inches, maybe it's your budget, move it away two more inches, does she have her period? moving away further, she just failed a test at school and you don't know yet. and blah, blah, blah, blah, blah. Like, why is this really happening? Things are so infrequently happening for the reason you think it just it thing? And then how do you do that? How do you make that time in that space? When you're trying to live your life and you have two other kids? And I'm assuming you have a job and a husband who's probably bugging you for sex? That takes a lot to tell him? No. And then you have to like you know, eat and watch television and vacuum the floor and and right.

Stacy 29:46
Yeah, well, and I think too, one of the things that I've learned in my life over the last, you know, five, six years of really trying to just pause and stop and be more mindful and because I'm kind of a nut job is to to learn Listen, and when either something is presented to myself, or the universe or whatever it is, and how I actually came to listen to the podcast was I got a thing from iTunes or however you get podcasts that says, it's been 486 days since you've listened to the Juicebox Podcast, would you like to continue? And I was like, What? Oh, hey, I don't think I ever listened to that podcast. I think it's like a dad and his daughter or something. And so I played it that morning. And it was literally scary to me that I felt like divine intervention had been like, oh, that I was supposed to listen, because we had had, you know, three or four fights over the last couple of days that had gotten pretty hairy. And that was sort of what started it.

Scott Benner 30:53
Well, first of all, I don't think that was Jesus. I think that's an algorithm Apple built so that people do Arden's Bolus for lunch here real quick.

Unknown Speaker 31:01
Okay, perfect.

Scott Benner 31:03
Are you hungry? So Arden did standardized testing this morning, and then ended up and said, I have to run down and get something to eat. I'm so hungry. And they're going to give us a later lunch today. And I was like, Yeah, go ahead and get something so she runs down. Text me. Hey, Dad, all the food was going because they're prepping for lunch. But I was able to get pop tarts. I thought. That's great. And how do we you know, what are we going to do? Because she's obviously ravenous. Right? She's not gonna stare at the Pop Tarts for 15 minutes. So I did my like sideways best to Bolus without Pre-Bolus thing for pop tarts. And we did. Okay, she went from 90 to 180. But she's 180 now and she's getting ready to go to lunch. So I'm gonna have to make like a really aggressive bolus here. To that pop starts

Stacy 31:53
that pop tarts still sticking to you. Yeah, like

Scott Benner 31:58
in an hour and Arden's looping right now. So, you know, her bazel has been, you know, jacked way up, we put in extra carbs, you know, all that stuff. And it's still just holding her like this 180 line. And now I'm asking if she's hungry, and she's not answering.

Unknown Speaker 32:14
I'll try again.

Scott Benner 32:20
She's doing really good. With all this though. I switched her over to try excited about it. Oh, you're out of your mind. She's not excited about anything. She's 14. She thinks everything is stupid, except her like, you know, her friends that are bad dummy text chains, and, you know, whatever. She's watching on Netflix, and that's all she cares about. She's just like, Look, if it's easy, the only thing she has said so far about looping is why are we doing this? We were so good at it the other way? And I said No, I know. But, you know, I'm trying to see if we can't be really good at this. And if we could be really good at this as well. Maybe it's just another option? Or maybe honestly, you know, at the very least it has allowed me to sleep overnight a different way. So, you know,

Stacy 33:08
I mean, I can't even tell you when we we recently got on the tandem. T one or T two sorry. And with the bazel iq, I have had more actual nights of sleep ever. And you don't you don't realize how sleep deprived you still are and I am not a weaker upper. I I've never been a weaker upper. I always say that if I need to wake up whoever the algorithm or Jesus will wake me up. And and it's always worked because the very beginning they told me Oh, you're going to need to set an alarm at 2am and, and see what our blood sugar is. And I'm like, let me tell you people, diabetic or non diabetic. Seriously, if mama got to get up at 2am nobody's living everybody will be dead.

Scott Benner 33:56
So we're gonna have there's not gonna be anybody left. I'm just gonna be wandering the streets mumbling I had to kill them. It's not my dream. And you know, so never

Stacy 34:04
I've never and and it's one of those things when I go to the support groups or meet people and they're like, Oh, this that I was like, I must be the downright selfish mother ever.

Scott Benner 34:15
Did it cause you a problem or what did you do? Just leave the did you leave the blood sugar higher? Or how did you handle it?

Stacy 34:20
Well, I definitely think that you know if she woke up at a, you know, one at 210 we never even thought second time. That was fine, right? She wasn't high. That was medium radio. Well, you didn't think about it that way was like

kind of a beat. He described. Great, okay, I'm a beast. I'm

Scott Benner 34:42
so amazed that that's never by the way a kudos and it's never occurred to me to consider a 200 blood sugar medium, but now I do and forever Well think of it that.

Stacy 34:52
Well, the funny thing is, is that now we probably think of a 110 is medium, right? Like, not bad. Not good. It's fine like That's what else were we probably thought about that like a 210. And so we just I didn't, I really, truly would wake up if there was something I would wake up startled. And I'd be like, I have to go, you know, check in or with Dexcom. I got to look over at my phone and see what's going on. And then, okay, is this like, should I drag myself out of bed and go take care of that? Or she okay till the morning. But I never set an alarm to physically wake myself up. Gotcha. Hold on, I have to grab something to walk away from the microphone for a second.

Scott Benner 35:40
So this is sort of interesting. So I will everything I've done to try to break the pop caught the pop tart log jam is working. She's starting to come down now. So pleased about that. I think that the insulin we put in for lunch is going to work great. But I think what happened was because she's off scheduled today because of this test. Yep. She bought a mouse. She sent me a note that said, we're eating now. And then they probably jammed around in the hallway and center right down while she's walking now. Probably in the hall. It's noisy, and she doesn't recognize that on texting. And to what we're going to talk about going forward. She's okay. Are you hungry? Kind of. gotta be kidding me Bolus. What is that gonna mean? Let's think it's probably half of that. I was gonna tell her at so now I'm gonna say, Oh, God. The 34 Schorsch definitely going to eat that. And that 4050 some of those items go and 60 carbs. Oh, I was like, What are you talking about car you don't carb count. But now you are because of the looping but I didn't. So I I'm, I'm loopy for looping. where most people would go through and count the carbs. I just went through and counted my units and then turn them in to my head. So I looked at it and I thought, Okay. 123456789 and then we're going to myself, this is going to be 10. And then I had to think what do we have the carb ratio set at? It's like eight to one. And so I was like, Alright, 1080. So 80 and then she's like, she's not sure. So I made it 60 that was the plan brain Park, the people, the people, the people who are probably like, Oh my god, you idiot. Stop telling people you're looping.

Stacy 37:38
Yeah, you're giving us a bad rap.

Scott Benner 37:40
But so we'll see what happens here. And I'm just going to tell her, tell me if you eat everything. And that way, we'll do more if we have to. It's just it's this standardized testing just throws the whole day off.

Stacy 37:55
So we were 54 yesterday, and I'm trying to I'm texting 54 going down. And I'm like, What is going on? Looking at the timeframe. And then she finally texted like, sorry, I had to finish the last couple of questions. I was like, these are standardized tests. These are not your test. These are for the school. This is your blood sugar.

Scott Benner 38:19
Like money from the state. Yeah. Wait, I

Stacy 38:22
like you got to be kidding me. You stand up, you walk out you go get a juice box. Oh my god, drive me nuts.

Scott Benner 38:29
Arden does the same thing, though. She's, you know, well, I couldn't go to that. And I was like, Why can I try? So and she's being polite, honestly, more than anything else. And I'm like, yeah, there's me know what I don't care about.

Stacy 38:42
And, and it's hard because you know, that's the kid I want. I do want a kid that is respectful of others and doesn't want to cause a commotion and those kinds of things. And that's one thing we've had to really work with Riley is to be an advocate for herself. So that, you know, she doesn't get into a pickle because she's trying to be conscientious of others taking the test.

Scott Benner 39:03
Hey, so for those of you not looping, I just saw the Bolus pop up on my app that I'm following with which I know most of you are completely jealous about right now.

Stacy 39:10
But now that we were talking about someone's like, well, a story that we can do in a second but we just had a major overdose, accidental bolus and had to be in the ER and you know people ask start asking all these questions. What about this and couldn't you do that? And isn't there something I was like, Look, people back it up. Okay. We are using the best technology and the best practices. It was an accident. But you know, that is one thing that I've said forever. It's like when she puts it in cancer just be a thing and then I don't have to text her I don't have to bug her because I know she bolused I know she corrected I know she ate

Scott Benner 39:51
we always tandem and I know there's probably some features and functionalities I screw you say clarify sometimes or clarity ease Is the DAX app that has nothing to do with this. But what I was gonna say is that if you had on the pod, by the time this is out there, there'll be apps where parents can see when the bolus has happened,

Stacy 40:10
right? Cuz that I think is a huge component of like your relationship with Arden. You tell her what to do. And from what I hear she, you know, she does it. And, you know, the biggest fight that we had right before making the shift was, hey, Riley, do this, hey, Riley do that. And an hour, I would get busy cooking dinner, whatever. And I looked at and she's 310 going straight up. And I'm like, okay, like, really. So I told her, I'm gonna have to treat you like we did when you were eight. I'm not going to do everything. But when I want to do something, and I feel that you are not going to listen to me, I'm coming over to your body, I'm getting your pump. And I'm going to physically push the buttons. And if you don't want me in that space, you have to figure it out.

Scott Benner 40:55
Yeah, I like that idea, by the way. And I'm seeing that with the loop too. Because with PDM, you know, with the PDM for Omni pod, I could pick it up and it was separate from her. Right. But now it's I need your phone. And so if you don't want your phone taken from you for five seconds, you'll have to pay attention to what I'm doing so that later I can just say, Hey, we're gonna do this now. And you can do it and she is picking it up. This morning. This morning, I asked her to do like a little bolus, like a maintenance bolus with it. Which now people are like, wait, I have to maintenance bullets with the DIY, just trust me, but I will have talked about on the podcast by the time you hear this one. But I think that it's fair to say that these algorithms are going to change people's lives immensely. But it's not going to be what I think some people are expecting, which is, hey, this exists now. And I don't have to ever think about my diabetes again, it's not gonna be like that. Right? You know?

Stacy 41:53
And I think that you have to take little bits where you can write like, Okay, great. This is I'll take this, I'll take this. I'll take that.

Scott Benner 42:00
I'll tell you what, it's it's telling me a little bit and this is the second thing I was gonna say taking from from the internet, you know, and maybe maybe throwing shade on somebody without saying it's them or not, and I'm not I'm, you'll get it in a second. I think that it'll lead into what we're talking about. Prior to puberty. parents of children who are managing these incredibly flat Dexcom lines, doing an amazing job of it. I know they think that they understand it better than everyone else. And they listen you do you have a you have obviously an understanding of the timing events on that that a lot of people don't have. But there is an aspect of this game that you're not playing yet. And you don't realize it while 100% 100% for your Game of Thrones fans. You were okay in doing well in the war until that girl got that dragon and then you really didn't have a chance anymore. Okay, so like you know now there's a dragon like before it was you fighting on the ground with other people with swords right now that's what you're doing your kids nine you have a an incredibly flatline you figured out how to bolus like cereal, which I know how to do And trust me, it's exciting when you do it. Right, you know, and all that stuff. But then all of a sudden the cereal comes back. And it's got a World Wrestling Federation wrestler. It's got Hulk Hogan with it now it's the cereal and Hulk Hogan and Hulk Hogan has a dragon. And you're just like, a, I knew how to take care of the cereal. And so these people would have no perspective on that. But I really wish sometimes they would just listen when someone else says, Look, it's gonna get more difficult, because because then they say, Oh, no, it won't. I know what I'm doing. And they do. They're so good at it like

Stacy 43:50
amazing. That's like the parents that you tell to sleep when they're pregnant. Like, sleep all you can now Okay, and then after you're like, why didn't I sleep

Scott Benner 44:00
before? I could have slept that entire nine months away? It would have been a good idea.

Stacy 44:04
Right? And with Riley like she was such a good child. We took her to restaurants and I was like, totally side eyeing other parents like, get your kid to sit in the chair. Why are they kicking my booth like all this, like holdall dogging them out. And then I had my second child who was the kid that like, stands up backwards on the booth and lifts the bands to pay from the you know, cafe feed on the side and you're like, Lord, help me I thought I was a good mother. I had a good child.

Scott Benner 44:36
Just get like, I people when Cole was born. I remember, you know, becoming a stay at home dad in 2000, which was not exactly the norm in society at that point. And, you know, people were, you know, kind of looked at me like, Oh, this guy is gonna mess this up. And when I when I didn't, they were like, wow, you're really good at this. And I was like, I think it's not for me to take complete credit for the kids. Really. Easy to deal with, right? You know, and I've always maintained that, that if I look like a good dad to you, it's also because my kids are fairly reasonable compliant people. And even when they become, you know, when they, when they get on the other side of listening, if you press back, they, they react pretty well to that to, you know, they mean even now in the middle of Arden being a lady, like we had a thing yesterday where she kind of, you know, she kind of pushed back in the wrong time was like, hey, let's do to stop. And she didn't. And so I, you know, I'm one of those people, I think this is a parenting moment, this is the worst part of my job, but I have to stand my ground here and make sure she understands. And it was unpleasant by the time it was over. And then, you know, an hour later, we were making dinner and she was laughing. And that was the end of it.

Stacy 45:52
And I think that's part that's a challenge, when you really are starting to deal with the the teen aspect of it. Because you know, someone when she was in her fours and fives have that, you know, she never really had terrible twos. Well, she had terrible twos, but she was actually diabetic and we didn't know it with all the you know, I got all these willful child, the books and all this stuff and come to find out before little thing was just sick. But when we would do those things, we, you know, would give her the benefit of the doubt for a minute. And that was pre decks calm. So you didn't know, you know whether her blood sugar was high or low. And I hated the sticker just to find out. Right, right. But then, as we, you know, went into the teen years, I would again try to give her the benefit of the doubt. But I also felt that I had to stay strong as a mom, because, you know, you lay the groundwork here. And you know, one day she sat in the naughty spot for 13 minutes, because she was acting like her four year old brother at the time. And I was like, I'm not getting through with you at screaming. So how about you sit in the naughty spot while he sits in the naughty spot. And I'll set your timer for 13 minutes. And it was funny, but it worked too. That was a long time. And I said I have very simple rule. You know, you respect me, you respect others around you. And if I'm telling you to do something, I need you to do it. It's hard when when their blood sugar is off to stick with that. But you know,

Scott Benner 47:19
I think it's possible that everyone with kids just heard you say naughty spot and thought of timeout and every adult of like sexual crime just thought I don't think that's what that lady means.

Stacy 47:31
Well, you know, I would go to the parenting classes, and they would do this thing of timeout and this of like, dude, that's not working for me. And we so yes, we call it the naughty spot. And that is a different a different way I

Scott Benner 47:46
would not have thought of a timeout if you would have said, Hey, sit in the naughty spot. So anyway. Well, we want to get to something like I know we are hitting tangible things as we're going along. But you see, you had like a genuine question. Like you said that, you know, that right? Like Riley when she's not in the mood to kind of like, I don't know what you mean, like when you met, she's not in the mood to listen or to or to care.

Stacy 48:14
For us. We were in that place where she wasn't in the mood. She didn't care, whatever. And we had a bit of a hard change. So I had discovered your podcast about three weeks before Halloween. And can I can you hold on one second? Scott? I needed someone else because it's making the podcast making noise. Yeah, I didn't know. Thank you. Someone just brought me my phone that I had hidden the other room. Sorry,

Scott Benner 48:40
I'm gonna do something nice. Are you in charge there? Is it like your company?

Stacy 48:44
Now I am working at an amazing co working space. I was a member number one. So I have a little bit of clout. But um,

Scott Benner 48:52
so I just thought somebody was like trying to get brownie points for you. And they probably just walked out thinking, Oh, I messed up, but not so good.

Stacy 49:00
So let's see what we're saying. Oh, so we

I started listening to your podcast about three weeks before Halloween. And I was like, super excited because you know, there was all these fresh ideas. And so I kept saying the guy on the podcast Says the guy on the podcast says which I think someone in one of the podcasts even said that. And so we started talking about it around the house is this concept. And I got a lot of eye rolls and my husband was like, What are you talking about? I'm like, well, you're on a need to know basis. Once we figure it out. We'll share it with you. So read along, and we just kind of were floating these ideas. But then sadly, on November 8, my parents were involved in a big wildfire that we had inherited California and the campfire and my my mom, my grandparents and my uncle all lost their houses. And it was you know, a pretty, you know, stick a stake in it traumatic day and the next day, we We went to go get our new pump and get trained on it and get it up and running. Are you getting the helicopter sound all of a sudden? Okay, good. And we also had just gotten the G six in the mail. So it was one of those days where it's like a whole bunch of stuff was happening, we didn't really know what was happening with their houses at the time, and where we get our diabetic care as a couple of towns over on a freeway with traffic. And for some reason, I made an appointment at 930 in the morning. So we're literally no sleep, I hadn't slept the night before we're jamming over there were in stopped traffic. And it was as if we weren't really driving, and we were floating. And we had this conversation where she basically said, You're constantly disappointed in me, and everything I do. And it cut me to the core of like, I am so not disappointed in you. I'm disappointed in the diabetes. And when we do stuff, and it doesn't work. And I'm frustrated, and I'm tired, but never for a second, am I disappointed in you. And it was a it was one of those moments where I feel so blessed and sad that you know, it had to take all of these other, you know, crappy things to put it there. But we were able to have a connection where we made a choice that we were going to take everything that we knew about caring for type one diabetes and throw it out the window, and we were going to arrive to that appointment with a diabetic educator 100% fresh, and we were going to go about it a new way. And I wouldn't want anyone to have to have to go through what we did to have to be in that space. But what I really want to do is like figure out a way for people who are trapped to put a pin in it and start fresh.

Scott Benner 51:52
Because that is what absolutely changed. Everything is just starting fresh of saying, okay, the guy in the podcast has been saying these things, we now have some two new technologies. Let's agree to not be mad at each other. Let's throw away that history of the fighting and whatnot and go from it from here. You just have to communicate honestly, it's such a It sounds so simple. But you know, if you're in any relationship, any personal relationship you're in is about communication, and about underneath understanding how the other person feels like, Look, you were coming at something in a completely earnest way. And still, she found it, like attacking. Totally, and you didn't mean that at all, because because she has a relationship with her diabetes that you can understand.

Stacy 52:41
And I have been told that many times, this is not your disease. And it's something that sometimes I have to be reminded of, because when I started caring for her, I it had to be my disease. She wasn't able to take care of herself. And as she is she you know, she wants the freedom and the flexibility. And that's the thing, you know, that's a little different. You know, like, I always joke with her and be like, well, Arden would do what Scott asked her to do.

Scott Benner 53:08
I don't care. I don't know who Arden is I don't care and you gotta shut up lady. So

Stacy 53:13
yeah, so she's been she's been pretty much handling things on a day to day basis. Since she started in sixth grade, we moved to a new community. And she started Middle School. And I had, you know, we call it Dexter, Dexter was, you know, giving me some data and that kind of things. But for the most part, she started taking care of everything in sixth grade. And when she needs help, she'll ask, but most of the time, she's taking care of it. And then I think what happened was she started really hitting the puberty and things went amiss. And then the eye rolls and the backtalk and all of that got all convoluted together. And the medium to high blood sugars really, you know, started pushing on it.

Scott Benner 54:04
Two weeks after we made the change. She came to me and was had a very serious look on her face. I was like, what what's going on? And she goes, You know what, I just wanted to thank you, because I hadn't realized how sick or unwell I was feeling in the two hundreds. It just seems like that's what it was. And now that I've broken out of that area and and more strongly in the 90s in the lower 100 I realized I didn't feel well there but I didn't know I'll tell her I'm really glad for That's amazing. And it's amazing that she that she had the wherewithal and and and to come to you and tell it to tell you without it being adversarial or like, you know, she very easily could have fought off. You know, that woman was right. I can't let her know that you know, like, right and she didn't feel that way. She just came and I said to Arden very recently that You know, there's just going to be things that affect how you feel sometimes. And isn't it funny, it's such a hard discussion to have. Because I think that I'm gonna sound like a, I don't know what I'm gonna sound like, I'm gonna sound like I was born in the 70s for a second, right? I think that every woman I've ever met who isn't currently premenstrual or having their period understands how horrible it is to have their period to be pre menstrual. I just wouldn't suggest that during those times, that you would suggest to them that they're having a reaction that isn't actually they mean to be happy. So when, when there are quite literally maybe two weeks of the month, where it's not good for your personal health to go up to your daughter and tell her Hey, you may be having a reaction right now that's not, you know, your real reaction, you have to find this sort of perfect moment for us to come up.

Stacy 55:57
Well, I think what we've tried to do in that area is that I think, you know, because my husband, when we first started dating, he started tracking my cycles. So when we went to have kids, he had like, all these data points that I was like, Why do you have this information? Like, ah, I just had to have a little bit of data. He's a lawyer, so he, you know, there's a there's a black and a white. And so he, he's very much like, yes, so you have your ears, your cycle is this long, and you have this and you skipped this month, I was like, I don't even know what you're talking about. But it has been sort of the thing that we try to do now Riley's also very tied to the moon, which I was like, I don't know what this is. But I'd been introduced to some, you know, hippie, dippie, Moon magic stuff and realize that she's very much tied in with that she's a very much drawn into how the moon is waxing and waning, and whatever. And so we've started tracking it. And instead of saying, This is the time that you're either not on your period, or on your period, or period is like taking it more to the moon and having equal, I don't know, wait to on off, whatever. And that because this comes all the time. Well, let's

Scott Benner 57:14
listen. There used to be it used to make my wife so angry. I would sometimes say to her, Hey, like she'd be leaving for work. And I'd say hey, like, did you you know, are you stocked up? And she's like, what am I going to get your period today? And she goes, how do you know? And I said, Well, two days ago, you were really nice to me. That always happens two days before you get your period. I and she's like, That's not true. And I'm like, Okay, oh, it's not true, whatever. And that's fine. We're up. Listen, and to your other point, a buddy of mine is a cop. And he's like, Look, I can't explain it. But on different like moons, people, people lose their minds.

Stacy 57:53
Now, and it's funny, because we'll look stuff up on the internet, she'll be having this day. And she's like, I don't know what I'm gonna do with my life. I don't know where I'm going. I'm like, you're 14 First of all, so let's not sweat it. But she'll just be saying this stuff. And so I used to get all like, hey, whatever the way I've got other stuff to do. And like, check your blood sugar.

Scott Benner 58:14
Blair now mommy's got her own level of crazy she's got to deal with I can't do your

Stacy 58:18
I'm trying to get in some rows and be alone. So now I just go online and see where we are. And so the last time this happened, I went on Instagram, and I pulled up these like, you know, I don't know what they're pretty little pictures with the quotes. There's a name for it. I'm losing my mind right now. And I showed it to her. And I was like, hey, look at this. And it was all the where the moon was. And because it was a blue wolf moon this over something horizon. Literally the words that she'd been saying to me were in this picture on Instagram. And I was like, You're weird kid. But I think you should look into this stuff that I think it would help you to know. Hey, I'm feeling this way because of and, you know, my blood sugar is, you know, one on one. It's not that okay, where's the moon? No, give yourself some clue.

Scott Benner 59:09
I have an artist telling me what she didn't eat. I didn't have the yogurt or the bagel. Alright, I hold on a second. All right. So let's think of what I did here. So by the way, she's 131 nice diagonal down. Okay, the yogurt. I didn't expect her to eat the bagel. I thought she would eat some off so she didn't so she ate cherries, grapes. Cookies. She had 3045 carbs for sure.

Unknown Speaker 59:48
Let's

Scott Benner 59:50
see what happens. Look for texts in an hour. All right. Go, I'm more of a roll your dice with my kids life kind of person. I'm like, Huh, let's see what happens. actually tell the food log, that you had

Unknown Speaker 1:00:12
3050 carbs

Scott Benner 1:00:16
instead of 60. So she's gonna go into where the loop log the food Instead, it was 60 carbs. And she's gonna tell it you know what, it wasn't 60 it was 50. And that was one of the things you were saying that that I think is going to be so helpful to see if you were like, spot on, or you are way off or that that calculation, I think, is what's going to be interesting. First of all, you're delightful. I'm still wrapping my head around most of this, I was given a reading assignment by Katie, she won't come back on the podcast. So I finished reading. But

Stacy 1:00:52
I was listening to that episode. And I was like, is he going to do it if you're not going to do it? That sounds so complicated. I can't imagine I can barely get on Skype to make get on the podcast like,

Scott Benner 1:01:03
I think so this is like future Scott talking about past Scott, which will be interesting, because I'll be if I stay with this looping thing, I'll be six months into it, by the time you hear me say this, but I think we're going to stay with it. And there's limitations to it, that we as people who are you know, bold with insulin don't see, I there's also pluses to it that you know, will help you. If you don't want to switch what I'm learning from it will help you as I start talking about different ways to, you know, be bold without the without the algorithm. But there's just a lot going on. This is a this is a moment where I'm absorbing, absorbing, absorbing, absorbing and trying to make sense of things. And

Stacy 1:01:45
I feel very grateful that you're doing it because I think, you know, like Arden said you guys were rocking it out in a particular rep to and is changed the way they've done things but because technology is changing, because things are doing, you know, different ways. And every company's handling it different. I feel like you would be a great person to check it out. Because you already have a way that you're doing it that has worked. So how can you give them feedback or give us feedback or evaluated in a way that others wouldn't be able to? It's exactly how I feel. In a similar sentence, I have thrown myself in front of a moving train for you.

Because Mike, and the test rat that has to live with your madness while you're becoming the mad scientist people

Scott Benner 1:02:29
look at me now in the house, they go, what should we do here? And I'm like, I don't know, give me a second. And I'm standing there like, you know, rubbing my my temples going. But I'm getting it like it's just it's so I think that the people who loop now that are obviously more technically based people because they were willing to leap into this right when it was like when it was nothing. And even when I talked to some of them, it's interesting. Like, they'll know these, these directions are very simple. I said, there's simple for you. Like, right, like, I'm like, I'm almost like an idiot. Like you have to like it's not simple for me. I tell her I'm reading things. And when I get bored, I skip ahead. That's right, right. Like most people, like this part's boring, I don't care. And they just randomly jump ahead for sentences. Like, I've done that, or you use descriptions of things that I don't use, and I go, I don't know what that means. And I move on. I said, you're a person who would see a word you didn't understand and define it and keep reading. I skip over it and let my brain filled it as best as I can. Because I don't think the way you think, which is why you're a scientific person. And I am not. And I said and I said you can't be mad at me about this. Because somehow the goofy way my brain works is how this whole bold with insulin thing came about and and now you're forced to like, So Katie told me and she made it public by having she wrote a giant blog post about it. There are so many of you if you're listening to this podcast right now, who managed insulin the way I do that she had to write direction for how to leave my method and go to looping.

Stacy 1:04:07
Right? Well, because I think it's the thing is, is that when I had the aha moment, and I literally heard myself saying, Why can't you listen to this woman who's only 10 months in? And why? because at first I often said this guy is crazy. And, and his daughter must be like stellar because she's paying attention. And all the things that I was giving me excuses as why it wouldn't work for us. And when I had that aha moment to go with it. I can't let that go now like this is I have been shown the information I've drank the kool aid, and I could see how that would be then hard to say, Okay, now you're going to throw all that away and you're going to go this direction and you're going to let the technology help you make these decisions. I visited I gave a talk this weekend. And while I was giving it I thought to myself, yeah, I should be doing this. This is

Scott Benner 1:05:00
But I still believe that these algorithms are, how the future is going to come. And I need to hold true to my word that I think that when leaps are made in management, you need to leap along with them. Or you'll end up being the person using regular mph when people found novolog. And I don't want, I don't want my daughter's care to get stuck in the past. Because when we talked about earlier, why don't doctors tell you? Those are doctors who learned diabetes with a meter. Right? You're walking in there with a glucose monitor, and a pump. And they're like, yeah, just count your carbs, put in the insulin, wait three hours and test. And you're thinking, Well, that doesn't make any sense. But that's what they learned and they got stuck there. I'm not going to get stuck. If that ends up not being right for us. Then God bless, whatever. I'll let it go. But I'm going to understand it before I say no to it. Right. And that's a perfect segue to what just happened to us. With our er situation. We say one thing before you Yeah, sorry. Okay. So again, this is going to be months ago now. But if you go back to an interview I did, which will go up next week, but be up for months. By the time you hear this. with Amy from insulin. She gives this she just gets very honest at one point, and tells me that when she started listening to the podcast, she thought I was a lunatic. Just like like you just described, right?

Stacy 1:06:23
Crazy, not quite Luna.

Scott Benner 1:06:25
But, and she said that I made her angry. Mm hmm. And then she told me that she realized after some time, she wasn't mad at me. She was mad at herself. 100%. And I thought, that's so amazing. And it's nice to hear for her that she made the leap. It makes me sad that my wife will never make the same admission, but that's fine. But it was just I don't mean around diabetes. I've been around everything. Yeah, right. Yeah. But but but the point is, is that she had the I think that shows a real core of character. Because I think there are a lot of times that we ignore things that make us examine ourselves. And she did she I mean, at first she had the reaction she had, and then she stepped back and said, You know what? Why Am I mad at this guy? Like for having a better a one c than my I do? Like, why don't I just let it go and figure out why. How did he do that? And I say that all the time. You'll hear me say it in social media. And when I'm talking when you see someone doing better than you. Don't be mad at them. think, wow, that's possible. And let me find out how they did it. There are plenty of people in the world who do a lot of things that I can't do. And I copy them, because they're having more luck than I am. So anyway.

Unknown Speaker 1:07:37
Well, I definitely

Scott Benner 1:07:37
think that that was the thing too is that I was thinking how can you know at 10 months? You You don't you have no idea? How can you know? And that was really me thinking why didn't I listen to this podcast sooner? Why do I have to be 11 years in instead of 10 years in? How did we not know that a seven seven wasn't a rock star a one c? Like how did I not know that? How did they get this far, one of the saddest moments I think I've ever had on the podcast. And I won't give the person's name Exactly. But they figured they found the podcast and it was too late for their health. And I just I I don't even know how I kept talking to them. Because I felt like a failure for not starting the podcast sooner. And I Meanwhile, I didn't know what I knew that I couldn't. And it was completely ridiculous. It's just it's the timing of life. It's something that no one's in control of like, you know, I mean, if I go have a car accident today, it's not like, you know, in hindsight, I can look back and go, if I just would have left the house Five minutes later, that wouldn't happen. But that's not how things work. So

Stacy 1:08:41
right. And I think the thing to have beating yourself up, you know, for me, it was like, Okay, I'm going to have a second with this. And then I'm going to move on. Okay, great. It sucks that we didn't know about it earlier. But uh, well, now we do. We're going to throw everything out. We're going to start fresh, and let's see where we get.

Scott Benner 1:08:56
That's excellent. Okay, so you alluded to and explained a little bit earlier that you guys had a confusion with a bolus that ended up in the ER, so I would love to hear about that. And we aren't in that we are in an hour. So this is probably the last thing we're going to talk about. But go ahead. Okay,

Stacy 1:09:11
perfect. So we were just coming off the high not from blood sugar, but excitedness we, I'm part of the jdrf Bay Area Planning Committee for our 2019 Gala. And we had that on Saturday. And so the girls my other daughter, Bailey and Riley and I were heavily involved in designing the event and you know, world win on Saturday, super excited Sunday. We tried to like keep it mellow, but we were exhausted. So other stuff to do. We roll into Monday standardized testing, schedules, different everything's off. So Riley is exhausted and left her phone at home, which she's has not done and I don't even know how long so she called me from the school office and said, Hey, I forgot my phone at home. But you know, now I've got my Blood Sugar readouts on the pump. So I don't need the phone, I'm okay. But you won't have shares. So you'll have to just trust me that I've got it handled today. And everything in my beings like, Okay, that sounds great. So, and I do totally trust her eye, you know? So I was like, Okay, fine. Let me know if you need anything. And so I went into a meeting and the school number came up again, I was like, Okay, great. Now the middle child is got something going because the diabetic has settled herself. And now the middle child is going to become a problem. And the voice on the phone was not my middle child, it was one of Riley's friends and she said, I'm talking to you, because Riley's freaking out, she accidentally gave herself too much insulin. And so I was like, Okay, my daughter can be a little heady and get a little excited. So I said, Okay, Gabby, thanks for calling. Do you know how much can you ask her how much she gave. And she said, Hold on. And so then it's like a little little bush collection. She gave 20 units instead of 20 carbs,

Scott Benner 1:11:08
Oh, my gosh,

Stacy 1:11:09
the entire time other than the moment we were diagnosed, I have never had a stomach drop to the way that that was. And the meeting that I was in, I literally got off the phone and said, I need to leave, there's been an emergency, I've got to go. And I then got in the car and I took a second. And I said, Okay, we've been owning insulin, we are bold with insulin. We'll figure out how to handle this. Because we are in charge of the insulin right now. I am not going to let the insulin be in charge of us. And it's going to be fine. But it took everything in my being to be like, Okay, I'm not going to panic.

Scott Benner 1:11:47
drive off the Golden Gate Bridge.

Stacy 1:11:50
Exactly. So I'm not going to say I didn't break any traffic laws. I happen to have the meeting about four minutes from her school, which is closer than I would have usually been. I got there and just very, you know, okay, let's handle this. How many juice boxes have you had, at this point? Let's get in the car. Let's start driving. And so we were doing our backwards math of figuring out how much carbs Do we need to now eat or drink to cover it. And I was like, okay, you're gonna have to drink about eight juice boxes, which I had just gone to the supermarket, after I dropped her off at school, picked up juice boxes, took them back and put them in the office and had them in my car. Never would have had eight juice boxes with us, because we just wouldn't have. So that was the universe prepping us for the emergency. And the thing that I was worried that she's going to start to feel sick to her stomach drinking this much. So it's trying to like go through what do we do? How do we do it. And in the end, you know, we ended up turning into the emergency parking lot at a 43 double arrows down, which was the scariest that I've ever, you know, felt in that situation. But I kept just telling myself, we're very close to covering this we're very close, I just need the juice boxes to kick in. The last one is just getting in there, the insulins ahead of it, like running through all of the sort of like things that you're talking about. backwards. backwards. Right. And, and just you know, and the backwards thing, one of the things you'd explained about you know, when Arden's playing sports and you're like, should I give, should I not what should I do, and just thinking about the concept of, I'll give and if we're, if I'm off will drink the juice box, like owning the insulin versus letting it own you. And I just kept trying to repeat that into my head to get us through like the emergency part of it. And then once we were in the emergency room, and finally back with the doctors after I had to jump the line and scare a lady that was trying to get a cast on her leg and she was broken and you know, all this stuff, you're fine move. Yeah. Later, I went out and found her and apologize. And she's like, Well, my foot was already broken. Another 10 minutes wasn't going to do me anything but you were coming in hot. So I figured we could let you do what you needed to do. But once we got in, you know, it was so interesting to talk to the doctors and some of the technology we were showing them they had never seen before. And you know, they were talking about how they were going to talk to another see if they could get our endocrinologist because of course, the hospital that we needed to go to is not in our network, we had to go to a hospital that we were not familiar with, but is in our town. Right? Because I was like, you know what I I know my calculations and 45 minutes of that insulin when it's going to hit if I take the 15 to 24 minutes to get to the other hospital. We could be in a different situation and i'm not i'm not going to risk that. But it was interesting to play with them in the sense of it being a team versus You know, hearing what they said, and I just kept thinking in my head of the different things, you know, and not specifically like, What did they say on the podcast, but it has become so much part of my daily experience and how I train myself and ways of thinking of things. It's like, yes, you are the ER doctor. And yes, you have information. I am also the mother of a type one diabetic, and I've been caring for her for this long. And I know how we're managing things. So we're going to talk this information out and hear each other and come up with a plan. But, you know, sometimes that's hard to because we've just now gone through an emergency situation. And I was like, I don't want to see a 500 blood sugar. I understand that we might have a big spike, but we need to calculate this. And not just shove

this emergency stuff into her.

Scott Benner 1:15:56
Stacy, I'm dying to know what happened. How did it work out? Like, what did you did the juice boxes work? Did she have to get an IV drip? Like, how low did she get?

Stacy 1:16:04
So it went with the last number that we saw was the 43 double arrows down. It took us about 10 minutes to get people to listen to us checked in and into the back. By then. She was no longer and during that whole time of the 10 minutes, it was just ello w double arrows down. So I don't

Scott Benner 1:16:27
know, I have a couple questions. Did you test your finger stick during then? And did you shut her bezel off?

Stacy 1:16:32
So we um, we took off the pump because she's on the satellite or like that thing's gone for a minute. So she has the T slim too. So it it would have shut off automatically because she was headed down based on its algorithm. But when in doubt we unplug because I just don't want anything like us to mess it up at that point. So we had she had tested at school when the incident first happened. And she was spot on with Dexter of what it said that she was. As we were driving we were 9167 43 doublers down. So the hospital tested when we arrived. And what it said 43 double arrows down. They got a 58.

Scott Benner 1:17:22
Nice. So that meant they they the carbs are starting to work. Yeah, in my mind. That's what that means.

Stacy 1:17:28
Exactly. So her blood sugar was up and we weren't getting the at that point. We were the dots were basically flatlined. And I think that's because it was so low. It was like it couldn't give us any information. But it was giving us the dots across. By the time we got in the back. I think the last juice box because what I was also afraid of I didn't want her to throw up because of having so much juice in her stomach. So we were trying to take it slow. That used to stay in there because it would like if it comes out it stops working right? because let me tell you the math is hard enough when you don't throw up but then

Scott Benner 1:18:06
you would have been like, right, that's enough, sweetie, we're heading for the bridge together. Nevermind. Like now that's the math I'm not gonna dig through the vomit. Okay, like, Oh, my God.

Stacy 1:18:14
And then. So once we were back, actually in emergency, we can see the dots starting to trend up. And so through our calculations with the doctor and figuring it out, we were basically one juicebox short. But at that point, she was way too nauseous to get it down. So they went ahead and gave her one push of the dextrose, which was about 25 carbs through an IV through an IV Yep. And they do a tiny bit of sailing with that. But it's mostly just the sugar. And then of course that killed Dexcom it was like what just happened. So it came up with a sensor error, which at first it took us a second to realize what that was. And then when it came back on, she was 78. And it was only an arrow diagonal up, which we were so excited about because, you know, as much as we want her to be safe at the same time I don't she gets she's now so sensitive to a high blood sugar. I just didn't want to shove her into this upper realm. So then she had to eat some hospital tuna for lunch and show that she could eat and keep a meal down.

And then we got to go home.

Scott Benner 1:19:45
So I went I want to say something before I asked my questions. So since then, have you set a limit on her boluses so that they can't go to a certain number without telling her Hey, you're trying to go over your Bolus limit.

Stacy 1:19:58
So interesting. Yeah. Of course, you know, you everyone's like, well, what? How could she do that? It's like, well, we figured out the math when we got the pump. And at first we were going to put it I think 12 units was what we were going to put the high at. And she's like, Yeah, but what about when we go to claim jumper and I eat 140 cars?

Scott Benner 1:20:19
Think would be the time we would get the the the message, and then we would override it? And yeah,

Stacy 1:20:25
yeah, so we have since changed it. But the thing that's interesting is, again, we're still you know, getting used to, we've only been on this pump since November. And in the grand scheme of things, that's still a short period of time of knowing all of the trials and tribulations with the testing with the off schedule, with the being tired from, you know, partying till two o'clock in the morning. All of that stuff is what set up the perfect storm for this to happen. And I just keep looking at it have one of being the example to share with other people. So everyone can now drop their bolusing down. And I think also it was a great wake up call for Riley, just to remember that this is a fragile situation. And, you know, all of her friends have always rallied around her. But you know, they don't really, they're newer friends, because we've only lived in this community three years. And so they've never, you know, really seen an emergency situation, not that we've never had a low situation like this. But they really rallied around her and were supportive and, you know, tried to be good friends. And you know, one of the friends when she started to get really heady and freaking out said, Stop. Tell me what to do. Like, I'm here to help you. So stop getting upset. But I don't know what to do for you.

Scott Benner 1:21:48
Yeah, that's really cool. And even like, because you have an emergency before around these other people doesn't mean I mean, like I can think of times when Arden's in a room and there's girls in the house, and one of them's downstairs, and I look at them and put a juice box there. And I'm like, this has to go to Arden right now. Right? And then they leave they know not to stop, you know, in my classroom and have a discussion about a movie like they know what's going on. These people just didn't know it on. That's this girl stepped in and did the right thing. It's really cool. Yeah.

Stacy 1:22:14
And the thing is, is that, you know, they very much know when because funny, this specific girl, Riley had just been at her house recently, and they'd all been having fun. And the mom was having fun. And everyone was having fun. And I am like pounding away on the phone because I can just see her blood sugar spiking double arrows up and like she's clearly eaten. And by the time I picked her up, I was being that mom that maybe someone might call CPS on. And you know, and then the mom felt bad that it was her fault. So they had just been through a different situation with us. And, you know, really said we want to understand more so that we can be better friends,

Scott Benner 1:22:53
and understand the immediacy of it. Because there's no other like, in a life without diabetes. Most things don't happen in a space where it's like now right now do it right now, like a timing issue. You know what I mean? And, you know, when should we I don't know, soon I'm getting hungry. Like that's how most people talk about it. Or that's what I constantly am telling her when she's with her grandma, they'll be shopping it cold. And you know, I'm watching her blood sugar goes down. And I'm like, okay, Graham is excited because they found shorts that fit in seven colors, and they're trying to decide what to buy them. And Riley doesn't want to be disrespectful and say, Gigi now is when I go to the food court, not in 10 minutes, you know. And that's something that you know, is being an advocate for yourself as a team, when you're taking care of yourself. What you got to do. It's amazing. So okay, so we'll remind everybody that your pumps have safety limits, you can tell it Don't Don't let my bullets go above a certain amount, you can actually do that with your bazel too. Don't let my bazel rates go up too high. It'll tell you if you try to go over that limit, and then you can make a decision about what you want to do. But at least then because if that happened, she would have been like, Oh, I didn't mean 20 years I met 20 carbs, haha. And then that would have been the end of it. Can I ask a question though, about the 20 carbs? Had she given herself the insulin for 20 carbs like she meant to how much insulin would that have been about?

Stacy 1:24:15
Um, so I think her carb ratio is one to six.

Scott Benner 1:24:20
About Yeah, she meant to give herself a little over three units and she did 20

Stacy 1:24:24
Yes. And so on her new touchscreen as you're going in, you punch in carbs are units which was a finger mistake. And then she made the 14 year old mistake of when it says is this what you want to give just blowing through those. And here's again the universe of it. You know, kind of watching over had she not forgot her phone at home. When she checked her blood sugar when she finished snack and was going into her next period. She would have looked at her phone to get her blood sugar, but she couldn't look at her phone because it was at home. So She looked at the screen of the pump to see what her blood sugar was because it's straightaway on the pump screen when you look at it, and then she saw insulin on board. 19.5 was lucky. She saw that. Ah, wait, wait a minute. It's lucky she saw that. Yeah. Because had she not. And the sad thing is, is her school is in like one of those cell deadzones areas.

Scott Benner 1:25:24
So there's often little glitches of different things. So it could have been one of those situations where they also had the Wi Fi on lockdown, because they were doing testing and all that kind of stuff, it was the perfect storm, you have to look, sometimes you just have to look, I tell Arden that sometimes I'm like, Look, you know, I'm not always gonna, you know, I'm not going to be involved with you constantly. And we hear between, you know, 120 and 70. I know what's going on. But, you know, just not doesn't hurt you to just orient orient yourself sometimes about what your blood sugar is just look down, see what it is and go Okay, it's, you know, it's what it is. And I'm done. And that's, it's good, you know, just to give yourself an idea. They're, they're learning. I mean, obviously, she probably took a giant lesson out of this, I think for you. I want to say, and we're getting so far over an hour, but I need to tell you like you handled this so incredibly well.

Stacy 1:26:15
Well, I've been having, you know, a good coach and not advice from you and just really owning it. And not letting it own us. And, you know, through the whole process, I just kept reeling through all the things that my head, what do I know, what do I know?

Scott Benner 1:26:34
I have to tell you that if this podcast in any way helped you get through that I am really, I am very cool. totally dead. Very grateful that that's true. I think that's really amazing. There's no way there's no way that five years ago, I could have said to my wife, hey, I'm gonna start a podcast. Five years from now, it'll stop a girl named Riley from having a seizure at her school. 100% Yeah, it's just so cool.

Stacy 1:26:57
Yeah. And so you know, tell us that the rock star way that we were living our life wasn't that rock star and that there is a way for a type one diabetic to have the same a one C as a non diabetic, that was not I didn't think it was possible. I thought that because you're a diabetic, you'll never be able to have you know, the same numbers, that wasn't something that I ever understood. And not that we have to strive for that in a way that that's all we focus on. But knowing that it's even a possibility and

Scott Benner 1:27:32
and just being able to, you know, take a seven, seven and go to a six, four with very little effort in this in the grand scheme of things, just doing it a different way. And putting the energy and positivity. I love your attitude. I really do. And I'll share something with you here that's I spoke to a an adult with type one, three nights ago. And I'm not going to give any of her details away but has had diabetes her whole life mid 20s parent a one sees off the charts blood sugars in the high three hundreds of most of the time, and distraught when I started speaking to them. And I made tiny adjustments in my mind to her basal insulin, and explained how to Pre-Bolus and the very next day woke up in her blood sugar was in the 80s

Stacy 1:28:25
I mean, because it's a thing,

but the Pre-Bolus and the slight adjustments those are such huge things in the overall scheme that you know she was diagnosed Riley before you you don't Pre-Bolus a two year old, you got to see what they eat, but never did a flag come up for them to tell us. Now the time now you make the

Scott Benner 1:28:47
shift. Did you know what her doctor did when she went to the doctor for help? took her took her pump from her. And that's that's the part that just you know, makes me sad and makes you say okay, well we just have to keep sharing the message sharing the message so that people see that that's the norm right that it's okay to be in control that your endocrinologist isn't the end all be all love them. But you know, it's your life you have to take over just even think of any point during Riley's you know, incident. If you were just throwing your hands up in the air and yelled call 911. And I'll just see what happens. I'll put this in someone else's hands, it would have went terribly

Stacy 1:29:25
well, and I just feel like the whole 911 experience of what that would have done to her just as a kid would have been so much more catastrophic and and, you know, soul shaking for her, and they probably would have stabbed her with some glucagon that would have made her 600 you know, I just I felt like I was the person that needed to shepherd that and take her there and know what we know and use our best practices even though as an emergency situation.

And so good for you.

Scott Benner 1:29:57
I want to I'm gonna say goodbye to you and I'm ask you to hold on for one second because I want to ask you something that's not recorded. So I really appreciate you coming on and sharing this you were incredibly open. And thank you Riley too, for letting you share her story and tell her I'm really proud of her. I think that's amazing.

Stacy 1:30:17
Well, thank you and I hope I do her proud because she was the one who kept saying Have you emailed Scott yet? You need to get on that podcast.

Scott Benner 1:30:24
You definitely did. I'm already wondering how I can move this up in the schedule. huge thank you to Stacey for coming on telling her story sharing Riley's situation with us telling the crazy story of the ER at the end and everything in between really wonderful, open honest episode. Thank you. Thank you. Thank you so much, Stacy. While we're thanking people let's thank dex calm. Let's thank touched by type one and of course, the Contour Next One meter, and how can we best thank them by checking them out@dexcom.com forward slash juicebox touched by type one.org and Contour Next one.com. There of course links in the show notes. There are links at Juicebox podcast.com, where you can type them right into your browser. Please support the show by checking out the sponsors. And if you really loved it, why not leave a wonderful review on Apple podcasts.

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