Scott Benner 4/24/18 Scott Benner 4/24/18

#162 Teach our Children Well

Understanding both sides....

Is what you say about type 1 diabetes to your teachers and administrators always what they hear and do your expectations and needs match what they understand and are able to deliver?

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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.

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Scott Benner 4/17/18 Scott Benner 4/17/18

#161 Justin Loves Mandie

D Hubby....

Justin talks with Scott about being the spouse of an adult living with type 1 diabetes.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - google play/android - iheart radio - or their favorite podcast app.

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Scott Benner 0:00
You're listening to Episode 161 of the Juicebox Podcast. If this episode is not the best part of your day, I'm going to give you your money back, or anything of that

Unknown Speaker 0:11
money back

Scott Benner 0:12
guarantee on a free podcast. Today's episode is sponsored by Dexcom, makers of the G five continuous glucose monitor and soon to be the G six coming very very soon. This episode is also sponsored by the tubeless insulin pump that Arden uses on the pod, you go to my omnipod.com Ford slash juice box to find out more, or dexcom.com forward slash juice box.

Today's episode is really very different. Justin is the husband of Mandy Mandy has type one diabetes, Justin doesn't. But Justin helps with Mandy's type one, he sort of like a caregiver but not for a child. It's very interesting. If you're the parent of a kid with type one, I think you're gonna love the similarities in the lessons that Justin has been taking. If you're an adult who lives with type one might be really interesting for you to hear about what it's like for someone who doesn't have type one to be this involved. Listen, I like all the episodes, that's why I put them on. But this one's got a really sort of different perspective. And I think you're going to quite enjoy it. Please don't forget that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise Always consult a physician before being bold with insulin.

Justin Robbins 1:45
My name is Justin Robbins. I am married to a type one diabetic. We are both in our early 30s. She was diagnosed when she was 14 years old. April 2000. And this is this is kind of our our story. So you reached out.

Scott Benner 2:08
Because I think you have a unique perspective, right? You're, you're an adult who doesn't have type one. Do you have any kind of to tie to? Do you have any diabetes on your life?

Justin Robbins 2:17
No, I have I have no diabetes, and no no history of it in my family either.

Scott Benner 2:22
Okay, so you marry a girl who already had you know, she has type one to begin with? Right? So correct. When you started dating? How far into dating? Were you? Did she tell you on the first date?

Justin Robbins 2:33
was actually when we when we first met. We We met at a a kind of a dance place. And she had she had tubing test hanging out there. She was already on a pump at that point. Right. And we, you know, conversation started and I I just kind of I don't know if it was rude or not. But I said, you know, hey, hey, what? What's this? That Oh, that's my, my insulin tubing. And I said, Oh, okay. And then then we went out on our first date. And she told me all about, you know, being a diabetic and, and basically, you know what I was getting myself into? And I it never, it never even occurred to me that that was a negative thing. Right? She's always been very positive about it. So.

Scott Benner 3:27
So I imagine at first if you I wonder if you thought like, is that tubing? I wonder if it's going to like, What if she has a drink with her somewhere? And she's just like those hats at the football games, which appears in the top right in the struggles that come down?

Justin Robbins 3:39
Well, to be completely honest, I kind of I you know, I didn't have a whole lot of medical knowledge. I thought it was a feeding tube.

Scott Benner 3:47
Okay, even so, is that what you thought before you asked her? Or is that even? Okay?

Justin Robbins 3:52
And yeah, when I first saw, that's what I thought. Interesting, huh?

Scott Benner 3:55
I don't know what I would think it I wish. I mean, I don't, it doesn't matter. But I do wonder if I was completely just disconnected from this completely. And I saw that, like, what would be the first thing you always hear people say, of someone came up to me and asked what that was. And some people are put off by that idea. And some people don't care. And I think we all need to sort of understand that there's no way that somebody outside of this world would have any idea what that is.

Justin Robbins 4:18
Right. And I think it's always kind of in the context of pallets as to she never mind filling people in on on her, or Dexcom or her pop, you know, her pump or anything like that. But sometimes when she doesn't mind if you come up and ask or anything like that, that sometimes people will grab it, or touch it and that's kind of fast. That's a little bit of a put off. Yeah.

Scott Benner 4:44
It's fascinating to think that anyone would come from and touch you in any specific way like that. Are we saying her name? I'm sorry?

Justin Robbins 4:51
Yeah, yeah, her name is Mandy. Mandy, okay. All right. So

Scott Benner 4:54
Justin and Mandy, meet, date, fall in love. Get married. And now, you've described yourself as Mandy's, like kind of primary caregiver like so. I didn't ask you in any kind of notes, because I don't like to know too much before we're talking. But I'm interested in that, like, so you're pretty involved in her kind of moment to moment diabetes life?

Justin Robbins 5:16
Absolutely. Actually, we just had our endo appointment yesterday. And I try to be as involved as I possibly can. Mandy is a TA as an RN, she, she's actually specialized in pediatrics. And so she, she works nights. And during the day, it's kind of my job while she's sleeping, monitor her glucose levels, and make sure that she's where she needs to be. So that way, she gets the right amount of sleep and isn't interrupted by it all the time. I help her change all of her sites I you know, try to monitor what she's eating and reminder to Pre-Bolus. And, and, and we both listen to the the Juicebox Podcast.

Scott Benner 6:14
Is this something that How did that happen? Right did I mean like when you guys meet the first time, you really feel like you have connection with her with her diabetes, and you're involved in it to she asked you do you offer? Does it happen naturally? Does she say, Hey, I'm struggling with this. I need help. Do you just I mean, what's the there's got to be a pathway into that, like somebody you didn't just look at her one day and say, Hey, I can handle a lot of this for you. So you don't I mean, so how did it start?

Justin Robbins 6:41
No, it was actually while we were dating. A while into after dating, we we decided to move in with each other. You know, it became on a on a day to day basis. It was something she was going to have to deal with. And I knew how involved she was with it. Although not always taking the best care of herself. She was always very involved in it with others like she even when we first started dating every summer, she always dedicated time to go to a diabetes camp that she had went to when she was a kid that helped her out a lot. And I knew how involved she was. And I knew that it was it would be important that if I was going to continue on with this girl that I become involved to was it was almost kind of a, you know, saddening one time when I had went with her to one of the diabetes camps, and they were actually they had lost a previous camper. That was my wife's age, like the year before, to a diabetes related death

Scott Benner 7:51
at the end of the camp.

Justin Robbins 7:53
Well, they didn't die at the camp, but they were saying that through there. Okay. Yeah, they had met every year. And then that the following year, when I went with my wife, that person just wasn't there. Yeah.

Scott Benner 8:03
Did that scare you? Or her? Moriah? Thank

Justin Robbins 8:04
me, I think. Because, you know, I care a lot about her. And I just could not imagine that happening to her. And I kind of decided at that moment that it never would, that I would, I would see to it that, you know, her stuff was managed and that that was never going to happen.

Scott Benner 8:25
So Mandy's probably, I'm guessing a caregiver at heart because she's a nurse that's that'd be a tough job to do if you didn't have that feeling. And you did. Yeah. Drivers absolutely taking better care of other people than herself, which I think happens to a lot of people who feel that way. My question is, were you a caregiver at heart before you met Mandy before you had an experience where someone passed away or just something that just got better for you? Or did it transform you at that moment?

Justin Robbins 8:52
It definitely transformed me now I can't say I was a caregiver. Yeah. I come from a family of people in medical school, but I was never myself. So no, I never. I had an instance. I've always been, quote unquote, healthy. I guess. Never. We'll never have to at least deal with this going on. Right? That I just wasn't, you know, it was very new to me. But no, I I knew at that moment that I wanted to help her out in any way I possibly could. Okay.

Scott Benner 9:30
And this is Mrs. I'm sorry, prior to your actual marriage or, or after?

Justin Robbins 9:35
Oh, this is this was prior titles. Well, yeah.

Unknown Speaker 9:38
Okay. Um, well, I

Scott Benner 9:40
don't find that in any way. Surprising. It does really hit you like that, or it hits some people like that. Now, the part that I'm surprised by or not, or interested in, I guess, is that I know a lot of people who are adults who have type one diabetes, who don't let other people even very close loved ones into their management at all. And so did you have to talk her into it? Or do you think she was, she was like, You know what, I could use the help or, like, because that's the next part, like when you start asserting yourself, what's the response from her.

Justin Robbins 10:15
Um, she, she kind of took to it. I mean, she had never had anyone be around that wanted to help her out with it. He she comes from a very, very loving, but old fashioned family, where, you know, she would, uh, when she was first diagnosed, first got on to a pump a year after being diagnosed, or a couple years after being diagnosed, she got into a pump. And even if she were to, like, try to need to take a shot or test, and she was like, at a restaurant with her family, it was kind of expected to get up and go to the bathroom, and test. And so it was one of those things that it was kind of nobody had ever told her, you know, that they minded it, but nobody was really willing to be that helpful with her,

Scott Benner 11:08
either. Okay, so and she's also in that mid teen area, right? She's like, 14 ish, like, right, right. And there's that moment where probably, as a parent, you're like, well, they she, and she's gonna have to learn how to do it herself. And, and then there's that, you know, that underlying feeling sometimes you're like, I don't know what this is. So hopefully she can figure it out. But I hear a point Moreover, and I do think it's an important one, like, psychologically being asked to leave, to take care of it just leave anywhere to go somewhere else, especially the bathroom. For some reason, it really strikes me as insulting. I don't hundred percent know why, but, but being asked to leave psychologically could say to you, no one wants to see this. Right. And no one comes with me. So no one wants to help with this. Exactly. Even if that's not the case. You could feel that way. I mean, right, by pretty easily, I think. Okay, do you think do you think Mandy wanted to be a nurse before she was diagnosed?

Justin Robbins 12:03
Now, she will, she will accredit being a nurse to when she was diagnosed at Children's Hospital, that she, the nurse that actually took care of her, and guided her, the very scary process, and, and everyone that came in and talk to her, other than that nurse was just scaring her think you'll have this your whole life, eventually, this will kill you, you know,

Scott Benner 12:32
just wondering how you're going out?

Unknown Speaker 12:34
It's gonna be this right?

Justin Robbins 12:34
Yeah, just all these awful things. And I finally had a nurse that came in and had a little bit of sense to her and said, No, you know, no, this is, yes, this is something you will deal with your whole life. But it can be managed, you know, through insulin, you can still live a perfectly normal life. It's just something you're just going to have to deal with, you know,

Scott Benner 13:01
I can't imagine I can't imagine being disconnected a little bit from my family, as far as the management goes day to day, and having a nurse Tell me on my diagnosis, you know, in the days of my diagnosis, that this is going to kill you at some point, right? I would have been like, what you don't know, I might get hit by a car. That's hard to wrap your head around. And then Isn't it funny, like so? That experience makes her think, Well, I'd like to be a better influence on somebody when they have their moment. Right? When that when all right. And then and then I don't know if you'll ever balanced the scales, because what it seems like to me is that every person I meet with type one who is in the medical field who says that having diabetes, move them towards the medical field, it's always because somebody said something really stupid to them. And I just I always imagined like we add one but then the next time you add one, it's because you found another one. And they I don't know if you can ever tilt the tilt the scales the whole way. And having said that, there's 1000 you know, good nurses, probably for every bad one. But it just is it's I don't know, it's a very strange idea that someone would even say that. Yeah, absolutely. You know, I, I don't know. I just, it's like a lack of compassion that that is hard to put into words because even if, let's say this was true, right, let's just go for a second say she got you know, Mandy got diabetes, and what it meant was it was gonna kill her one day. Is that good to tell her on like day two, you know, like, while she's trying to figure out the insulin and all this other things, it's an odd, it's an oddity that people want to scare you into doing something instead of giving you a chance to just understand it and do it yourself. Right, exactly. That's really sucks, actually. Okay, so now I'm in. This is so okay, because I've never met somebody who's managed somebody's diabetes, like, with like, because she's sleeping right? So you're actually taking care of so let's go through that for a second. Imagine if she's sleeping. Taking care of it. And you did say she has a pump issue of a glucose monitor. Are you testing her while she's sleeping?

Justin Robbins 15:06
Now she has a glucose monitor. Okay, so the one good thing about us is we've always been kind of with the I guess cutting edge. If it's cheap, she does her research. All the time is all the time telling people things before they hit the market. Always, whether it's parents without this pay for it, I'm more than happy to sit on the phone with them. And just argue with them all day long. Or get up whatever paperwork it is that you say they require from day to day. But whether it be that or pay for out of pocket, we've we've always been good about keeping her in the best pumps and sensors. we've, we've been through just about every type of pump there is literally, and we've been through both types of sensors, but Dexcom just just works out best for us.

Scott Benner 15:59
That's the one that you landed on. How about which what kind of pump does she like?

Justin Robbins 16:03
She has on a T slim

Scott Benner 16:05
He's like, Oh,

Unknown Speaker 16:06
I like that which

Justin Robbins 16:07
people like that. We love green. We love the we love the T slim. The only problem is I cannot find any endocrinologists that have the software that can look up to it. Oh, so yeah, it's apparently their, their vendor support is not great.

Unknown Speaker 16:28
Yeah. Okay.

Scott Benner 16:31
All right. So she's pumping and she's got a dexcom and sort of shot now here. Let's walk us through a moment she comes home from work. She's disheveled has had a long evening at the working comes home. Do you guys hang for a little bit? Or does she go like right to passing out? Like, what's her? What's her like vibe, like when she gets home from work?

Justin Robbins 16:49
Well, actually, it'd be it'd be early morning when she got home. I'm sorry. But But usually when she comes home, it's been several hours since she's, she's eight. So a lot of times either she'll have some sort of snack, which we I always beg and plead or please don't let it be cereal. It is my my job throughout the morning and and even early afternoon is going to be hell. But barely trying to make her some kind of some kind of fairly low carb breakfast. We're not low carb people. But right before she's gonna lay down, I don't want to load her up with pancakes and toast and syrup.

Scott Benner 17:31
Yeah, and it's funny because it's the morning but really it's the evening for you so right what most people would think of is at 10 o'clock at night when I need a snack before I'm gonna go to bed or eight o'clock after dinner or something that I if I start adding all this this conglomeration of carbs, all it really does even if you handle it really, really well, like just even if you're just sort of like a ninja with your, with your balls there, then it's still you still have the opportunity for like, a crazy low later or high that creeps up on you or something like that are just missing and now she's sleeping and your glasses. Interesting. Okay, so, okay, so you give her something to eat your you allow her to eat something that won't mess up your night or your day. And so it's like, it's funny, because I've had those thoughts where Arden's being like, you know, I'm gonna get a snack and you're like, looking across the room. Like, he can hear that he can hear your brain say no, not that please not that. Like, you know, that never say anything because you don't want to, like, you don't want to, you know, I don't want to give her a weird feeling about food and at the same time, like I can tell by what she grabs what time I'm going to go to sleep. Right. And so it's just fascinating. Okay, so, so you guys hang she whenever she crashes? And then do you like do you just stay around the house? Or do you?

Justin Robbins 18:49
I I work also but a lot. I don't work nearly as much as her I only work part time. And so I'm usually around a lot more. And also my job doesn't require me to be there some really early hours I work retail. So I sometimes go in like mid afternoon. So she's she I can usually tell by like the path on Hmm, I mean, shoot, she can't manage it herself.

Scott Benner 19:19
Yeah, I don't think we I guess we should have said that. It Mandy's not like I don't know what to do. She right? You just you're just trying to lighten her load because her schedule is so strange and exactly

Justin Robbins 19:30
right. And she works 12 hour shifts. So her quality of sleep you know needs to try to be somewhat decent because not like me where you know if I go into work and I'm a little tired maybe a printer doesn't get sold but her you know lives are on the line.

Scott Benner 19:46
Yeah, you know it occurs to me too. She works at 12 gets a bad night's sleep because of her blood sugar's still got to go back and work at 12 again. Right now she's 36 hours 24 of them are on her feet working and maybe she Didn't get quality sleep in between that's, and that's a reality. You know, I mean, everyone listening, everyone listening knows that your sleep can get messed up by diabetes. And sometimes you can have like, you can look, as you're going into the evening and think this is going to be the night this is going to work. And then and then it doesn't. And sometimes it just does out of nowhere and you can't plan. It's not like you can say I really have to sleep Thursday. So I'll get straight. So that works. You just do your best. And if it works out, it works out.

Unknown Speaker 20:29
Exactly.

Scott Benner 20:29
So. Okay, so in your note, you said that you feel like listening to the podcast has helped her with with like some of her goals. Oh, absolutely. Diabetes, diabetes wise. So I'd like to, I'd like to get you to tell me about before before you find the podcast. And you know, and get to listen to people telling their stories and everything. What was an average of what was happening, like snacks like meals, like how did it go, usually, I want you to promise me right now you're not going to wait any longer. You're not going to say to yourself, I'll do it next week or when it gets warm out. Or as soon as I get done this project that worked. Just do it right now. Go to dexcom.com Ford slash juice box, click on the link in your show notes, go to Juicebox podcast.com. Click on the link there. I don't care where you do it from. But today's the day you're going to find out more about the Dexcom g five continuous glucose monitor. You're listening to people every week on this podcast talk about the success. And the ease that they're living with do in a huge part, to the information that they receive back from their continuous glucose monitor made by Dexcom. I'm looking at ardens blood sugar right now I just brought it up in front of me on my iPhone. It's 9494 and steady, it's not dropping, it's not rising. She's in a great situation for an hour away from her Pre-Bolus. For her launch, that Pre-Bolus is going to be beautiful. Because of the information I'm getting back from the Dexcom, she's not going to spike after sheets. And she's not going to get low later, she'll spend the rest of day at school with a blood sugar right around here. And then she's gonna get right on a bus and go play softball afterwards. That's the beauty of the dexcom share. Even when I can't be with Arden, I can see her blood sugar. Just say this bowl is for lunch doesn't go exactly the way I expected her blood sugar starts to rise, we can address it, it starts the fall, we can address it, she may need more carbs or more insulin, but we're going to know right away because I'm going to be able to see her blood sugar and which way it's trending. And we can act quickly make a decision. Stay off that diabetes rollercoaster tried today, click on the link in your show notes or go to dexcom.com forward slash juicebox. I'd like to get you to tell me about before you find the podcast and you know, and get to listen to people telling their stories and everything. What was an average of what was happening.

Justin Robbins 22:54
So let me just start off by saying I feel at this, now that I know what I know. I feel kind of ashamed that we allowed what hap was happening to go on for so long. So prior to listening to your podcast, we and it was I won't say it's anybody's fault. We just kind of I don't know, I didn't quite understand the the principles out. So we've had the Dexcom for a while. And we had her parameters that just just ridiculously high. Okay. And it was for the reason of she didn't want to hear the beeps while she slept. Right. And also until listening to your podcast. I always had a death fear of her being low. Like everything I would read all these articles, you know, all well they went low during their sleep and just never woke up. And you know it because bad news travels fast they there was like you always read those articles, but you don't read anything about like the nasty side effects of having high blood sugar all the time.

Scott Benner 24:09
Hard to talk about. Yeah, if people people are not excited to talk about problems that can come up later.

Justin Robbins 24:15
Right. So we always erred on the side of just letting her be high. Because she can handle being high, a lot better than she can handle being low. When she started when she starts to get around. Low, you know, just even like the mid to low 80s. Like she'll say something to me, right where she can ride 100 or 250 all day and never say a word. And that's and that's awful, but we had her parameters set it where the it wouldn't even alarm at a high until like 240 and that was just for her sleeping. You know, like I knew she had to eat so I know she'd go up a little bit and And, and it even got to the point where like when before I would leave for work if, if she was like, you know, I kind of have like a rule of thumb in my head that if she was 180 or a little below, I just leave her like, I wouldn't give her any insulin, because I know that with her bazel she would to drop a little bit and I would be afraid. Put her towards closer to, you know, 120 because I didn't want her to dip low because she would immediately die. And that's kind of like the mind. Yeah, yeah, so

Scott Benner 25:37
blood sugar's gonna hit 70. And then I'm gonna be out looking for another dating situation.

Justin Robbins 25:43
Well, we had a scary incident one time after she had a surgery. And she wasn't able to really eat very much. And she was very weak afterwards. And I was that he told me to go to work. I had already been monitoring her for several days. But then she her blood sugar got low, she didn't really feel it because of all the drugs in her. And then she just kind of just kind of went down. And like my phone went off. Because I get alerts about her from her decks calm right with the shin had had her at like, 45, right. And she wasn't picking up the phone. And it just totally freaked me out. I jumped in my truck and left Blackmer fell through the parking lot as I got home, like a chase scene from a movie. And ever since then, like it just scared me. So I never I never would be bold with insulin, I would always let her be high. And so her a onesies were reflecting that

Scott Benner 26:47
it's funny too, because the the fear of So, so real, because what you're describing is a unique situation that doesn't exist in most of your day. She had had a surgery, she was medicated, you know, like, right, all the stuffs, but you see this 145 blood sugar that then causes you to, you know, for the rest of the year, except like 180 or 250 or something like that, because I don't want to be 45 again, right? It is. It's interesting why I want to I just want to stop you for a split second and go back and say I heard in your voice. The when you said ashamed, you know, you said I feel ashamed that I know, you know that you shouldn't be right, like, right, yeah. Like you don't have the, if you didn't have the tools? How would you know, you know, and then you, you lay the fear on top of it, then you'll lay the reality that you know, someone has passed away on top of it. And you know, and it's someone you love. And it's hard to you, it's hard to make that decision. Like I don't want to, I don't want to trade, you know, today for tomorrow, but I guess I'm going to and and that's that's not an easy decision to make, you know, that the end. And at the same time. It's the decision that a lot of people end up making. And the thing that broke my heart and caused me to want to do this. Because when you said you know she was at 180, I wouldn't correct like in my mind, I think while there's 100 points to take off there. You know, and even when I see my daughter, like that's why our hearts are high thresholds at 130. And as soon as Arden gets some more body mass, I'm gonna move with the 120 you know, as soon as I can, but when I see 130 I'm like, okay, insulin is not a lot, you know what I mean? But it's gonna be some, and then we take care of it. You know, like later this morning is a good example. Like Arden gets up and she's just stuck at 140. I'm telling you, Justin stuck like that, you know, I got up as I go, okay, you know, give her some insulin, doesn't move, get her downstairs, give her some insulin doesn't move center school. She's 145 on the Dexcom. And I'm like, you have to test them if something's wrong. Like I thought for sure. I was pretty sure she was gonna test and be way higher than that, like the CGM was off or something. Because usually when you get that really steady number that you can apply, it's wrong, right? But But instead, she tested in, she was 141. I'm like, Oh, this is really just a blood sugar that stuck. So we cranked up her basal rate for a half an hour. And now she's 102. But it's gonna be it's 15 minutes until I have to Pre-Bolus for her lunch and another 20 minutes after that before she's eating. So I just texted her while you and I were talking like 10 minutes ago, and we decreased her basal rate by 40% for an hour. Because now I'm hoping to catch it right where it's at right now one or two and just let it sit there. I don't want it to get much lower so that I can Pre-Bolus the way I want to. Right. But no one says that stuff to you. When you're diagnosed, you know, Mandy's being told Hey, you're gonna die. You know so but but no one no one's telling you that no one explains how the insulin works. No one understands, you know, I was watching someone online last night speak about, you know, this poor kids graph is just all over the place. And I reached out and I said, Look, you don't know me, but if you call me we can fix this in 10 minutes. And I genuinely mean that, like 10 minutes of talking and we could fix this. And I just I don't know why I mean, everybody's not my problem, you know, they mean like, but it just this one got me it just really kind of broke my heart. And it's, it's just, it's crazy to think that this person's having this stress, this anxiety and this and this shame that you're talking about all these other terrible things. Because someone didn't sit with them for 10 minutes and explain, hey, this is a tug of war between the insulin and the carbs. And you're just trying to keep either side from winning. And here's how that works. And here's how you do that. And again, it's just it's such a, it's it, I get angry about it that right? That that's not the advice you get coming out the door that everybody gets, you know, but so so I mean, talk about that a little bit. So what are you doing, like she's eating and you're probably not using enough insulin at first, and she spiking, but it's high, and it's not so high that you're like, Okay, so you sort of leave it is that was that sort of the

Justin Robbins 31:12
day? Yeah, I mean, basically, if she was, if she was under 200, I'd leave alone, because I kind of went by, not by what she should be at, but how she felt and I knew that if she was under 200, that she would feel fine. And, and so I just kind of, you know, accepted that. And, and, and then everything would be relatively fine, except when we would have our endo appointment, and I would go with her. And you know, we'd get the you know, shame shame. And by the way, we recently got a new endo, because our previous one, every time we would go in, they would just constantly mess with things like we had an endocrinologist who you would see the endo themselves about once a year. And then the rest of time you would see a nurse practitioner, right. And they didn't agree with each other. And they didn't. And they didn't communicate with each other either. So when we would see one, they would put all these weird settings and her pump. And then when she would see the other they would say, Oh, no, that's all wrong and change it all back.

Scott Benner 32:29
Yeah. To try this. Try this. No, right. Nobody knows why or what they're doing or now.

Justin Robbins 32:34
It's all just

Scott Benner 32:36
well intended. bad advice. Right? Yeah,

Justin Robbins 32:40
one of the tricks, one of the truest thing that I ever that really grabbed me from your podcast was by living with diabetes, you know more about diabetes than anyone you will meet. Trying to help you with it doesn't have

Scott Benner 32:58
it. And then there's the frustration. So you go in, you know what's going wrong. You don't have the tools to fix it. The person who probably has the tools to fix it doesn't know what's going wrong. And so they do the wrong thing. And you sit there frustrated, but there's this there's this impediment to stopping it. Like that process goes on and it's everyone's guilty of it at some point, right? Like, you somebody says something to you, you think that's not right. But you know what, they're in a position of power and I got to go home and do the laundry. So they said okay, then it's okay. Doesn't make it okay. You know what I mean? People tell you things all day long that they might be wrong about and and sometimes you're not in the position to know the difference. And sometimes you are but in this very specific situation, you're in the position to know. But a lot of people don't feel in the position to act. And and that's something I used to talk about a lot more that idea that people are you're raised not to question doctors and police officers and teachers are certain people in positions of power that you just assume know more about these things than you do. Or you know, or have this power over you that you can't break free of but that's not true. Except for the police thing. Police says Raise your hands. Justin, I always want to put your hands on other than that, you know it just and that's the tough part you hear people talking about on here all the time. I knew it was wrong. I couldn't speak up. And right and I'm hoping that everyone listening to this when they know something's wrong speaks up. It doesn't mean you have to get into an argument or fight doesn't have to be uncomfortable. You just have to say Listen, my blood sugar is 200 and I hear you telling me that's okay. But it's not okay because here's here you are sitting across from me you don't have diabetes, your blood sugar's probably 80 you know, right 90 or something like that right now as you're sitting here. So you're gonna really tell me that mind being double plus what what the normal average is that that's okay for me. And in the end, and I know I say it a lot but that's don't die today. Advice. That's not what live healthy advice, right? You know you want to live as long and as well as you can not just today, you know that's it breaks my heart. So in the last ad, when I spoke about Dexcom I told Jordan's blood sugar was 94 inch steady. Now it's about 10 minutes later, I'm still editing the podcast and her blood sugar is 90. Still very steady. But it occurred to me You don't know how I got to that? Well, I woke up this morning and Arden's blood sugar was 130 around 6am. So I gave her a small bolus, and I adjusted her bazel. I did I think that 20% Temp Basal increase and a small Bolus, which got her blood sugar down to about 110 she was leaving for school. A few moments after Arden arrived at school, her blood sugar started to drift up, we did another Temp Basal increase, and another small bump of insulin that was handled through a text message or Arden that on her end just pushed a couple of buttons on her on the pod PDM. And it was taken care of. Now we're talking about two increases of basal insulin and two small boluses. Now if you were on injections, first of all, you're not in control of your basal insulin. And secondly, you probably wouldn't give two small injections in the course of an hour and a half. To make this small bump, you might have looked at that 130 blood sugar. And you might have said it'll be okay. That maybe you get to school when that blood sugar goes from 130 to 140. And you still say that not worth injecting. But right now, Arden's blood sugar's 90, that's 50 points better than 140, just with a little bumping and nudging of insulin. And this is all done with a tubeless insulin pump. So it's as discreet as Arden wants it to be, she doesn't want anybody to know she's wearing insulin pump, she doesn't have to let them know, there's no tubing, there's no cable, she's not attached to something, she's not wearing something around her waist. It is magical. Now I want you to consider getting a free, no obligation demo of the Omni pod, they'll actually send you out a pod that you can take a look at and actually wear, all you have to do is click on the link in your show notes. Or go to my on the pod.com forward slash juicebox. And that's the tough part you hear people talking about on here all the time. I knew it was wrong. I couldn't speak up.

Justin Robbins 37:14
He was the appointments, you know, we would go in and they would they would tell us this, this magical number this, this a one c number. Yeah. And they would say, well, that's not good. And I'd say Oh, okay, well, how can make it better? We need to manage better. Great,

Scott Benner 37:33
not advice. Advice.

Justin Robbins 37:35
Right. So how would I how do I manage better? And also, what does this number consist of? Well, it's the scale. Yeah. Yeah, I got that. So how do I help decrease it because you say this higher number, which, by the way, it was it was 8.2. And

Scott Benner 37:58
we just, that's one of those agencies, by the way. And please, no one get offended. But that's one of those a one sees that you hear that we've been tossed into believing that one's fine. Like, it's not a problem. And listen, when you're first diagnosed, it's not a problem. But some point you have to, you know, be mean have to you should try to figure out how to how to cut the out. I hope this is clear to everyone listening, anyone sees not the end all be all of everything. It's just a it's a measurement. But you know, forget anyone see for a second talk about your average blood sugar, if your average blood sugar's 90, most of the time. Who cares what your a one C as long as you don't have crazy lows, that are persistent, or, or that are frequent. And you're not banging up and down, that roller coaster is bad for you, it's hard on your system to go from 80 to 300, and sit there for two hours, then go back 200 and sit there for an hour and then go back to 80. Then Friday and then but that is hard on you. You know the best thing that you if you had an eight, a one C, but your blood sugar was always 140 or whatever it equates to. And I'm sorry to all the people in Canada who are frantically I got a somebody sent me an email last night. I love the I love the podcast, I'm from Canada, but I'm always watched and listened with a calculator because I never know what the numbers mean. That's hilarious. I'm sorry. But, but but you know, if you're nice and steady, and you have an eight, believe it or not, that's much healthier for you than banging up and down and having an eight,

Justin Robbins 39:25
right, which is exactly what our new window was telling us. You know, making sure that you're steady all the time. He said, You know, I'm not going to put as much emphasis on this number because, you know, you could sit low all the time and achieve a low number and that's, that's not not at all what I want.

Scott Benner 39:45
I I'm also afraid that a lot of endos think that if you have a really great a one c it's because you're low and it's not because you figured out how to keep your blood sugar at 90 right but what I always maintain and what you You're probably learning now is and it's not a bad idea if you can find a way to stay steady at 150 Mm hmm. Then you just take everything that you learned and just got I know this sounds so overly simplified for people who are struggling with it, but you just take what all you've learned, and you just move it down to 90. And that's not hard to do. It's just it's the idea of you don't let the spike happen. If you don't want to spike happen, then you never get to 151 50 in my house is Jesus we've messed up. And, and in a lot of people's homes, 150 to them is like, whoo, this is working, you know, and, and so, because people say, Well, well, when I keep it at 100, I get low later. But we don't, because our insolence timed out better. And that's the real goal Justin is is that the timing is I find myself walking around my house thinking of different ways to say things on the podcast sometimes happened to me what happened to me last night, but I still think that one of the best ways to think about it is it's a tug of war. There's a flag in the middle of the rope, the carbs are on one side, the insolence on the other side, you can't let someone pull First, if they pull first, they're gonna have an unfair advantage for the rest of the fight, you need both the pole at the same time, you need him to both Stop pulling at the same time and then the robe re ever moves. It's all about the timing and the amount of the insulin. it's it's it's understanding how the insulin works. And not being scared to use it when you need to use it. You know, is is pretty much the entirety of the thing. Eat right now. And of course, not part of the advertising. But the Dexcom the CGM makes that much easier. You know, there's Yes, there's no doubt about that.

Justin Robbins 41:41
Oh, the CGM is the is by far my favorite thing we've ever purchased for diabetes. I mean, it's just it's been such a life changer. But real quick back to the a one say. And this is and this was actually before we even started going into this new info, so I'm not going to give them the credit for it. We, we started, we found your podcast, started listening to it. And it just, it just helped make things click with you know, stop worrying so much about you know, going low, you know, you could always just eat something real quick and bring it right back up and be you know, more a little bit more bold with insulin. And also just like very impressive, you know, your your thresholds with what you consider high. So we started knocking her her dexcom down. You know, we started going down like every, every week, we would go down 10 more points to what what was high where I told you originally it was like 220 I think we're down to currently like 170. And we're going to continue to keep going down down and down and started making her live within these, you know, because I just knew that if I if I could make her sit at 180 all day, I can make her sit at one 150 all day, if I can make her sit at 150 all day, I can make her sit at 130 all day, and so on and so forth. And on the last appointment we just went to we went from an 8.2 to a 7.3. That's a wonderful decrease. Congratulations.

Scott Benner 43:19
Very, very, very exciting.

Unknown Speaker 43:22
That's amazing.

Scott Benner 43:22
I loved hearing you talk about it just that. I don't let all you people make a podcast, I get stopped doing this because that's spectacular. Really. Congratulations. First of all, tell me in your, in your mind the difference between steady blood sugar at 180 and a steady blood sugar at 120s. What is the difference? Is there a difference?

Justin Robbins 43:40
There is no difference. It's your fear. Right? Right. Right. It's letting go of, of that stigma that the insulin will kill you, you know, because that's, that's what I was told right at the beginning. You know if you give it too much to those who killer, right? Oh, boy.

Scott Benner 43:57
Yeah, and by the way, not not true. just not a good way to live your whole life. Right that you can't you can't have this thing. That is pretty much the only thing keeping you alive. And then have somebody tell you to be really scared of it all the time. Right? Yeah, to find a there's a balance, you know, there's just a happy understanding it really is. It really is the you know, you have to respect fire, but you can't fear it. Like it really it really is that ideas you know, you need this thing it has to work. You have to make this work and just using enough so you don't end up in decay every day.

Unknown Speaker 44:35
Mm hmm.

Scott Benner 44:36
That's not okay for your health. Now, if you're overwhelmed by this fear, and you can't break out of it, you are probably going to have long term complications. And the higher your blood sugar stays, the more consistently it stays at high The sooner those complications are going to arise if they're going to arise, right. You don't want to be the person in my opinion. I'll tell you a story that My dad, my dad, I'm adopted. So my my, my adopted father, but I've never thought of him as anything but my dad, even though he left my mom when I was 13, and I really didn't grow up with him, I still think of him as my dad when I'm thinking back on him, right. So he grew up on a farm. He said that they started smoking, just stuff they found in the field. And I don't mean like, you know, weed I just mean like cat pails, they'd wrap them up and so they were looking to smoke or something my father was, you know, he would be in his 80s now if he was if he was still alive, and so he started smoking stuff right away. And then he started smoking and for smokers or people with smoke in the past I'm telling you, my dad smoked Chesterfield, Kings unfiltered, like you know, and if he couldn't find a Chesterfield, Katie I smoked a Pall Mall unfiltered, my dad was smoking the tobacco that fell on the floor of the cigarette factory like this with some strong crazy cigarettes. And that's back when nobody was regulated, darn thing. And so he smoked and smoked, and smoked and smoked, and my dad smoked two and three packs of cigarettes a day. And so he liked one with the other one, my dad would smoke coming out of the shower, I'm going to die one day from the smoking my dad's probably lucky left, my mom might have saved my life. And so I'm talking about a lot of smoke, okay. never had any health issues from it. Never in his 30s in his 40s in his 50s, never, ever, ever. And then one day, my dad says, you know, he's got congestive heart failure. Well, that's from the smoke, you know, but I'm going to talk to my dad up until the day someone told him he had congestive heart failure, he would have told you, he was the lucky one, he was the special guy who smoking didn't affect because that's what he thought that was the that was what the beauty of being human allowed my dad to think about cigarettes, it's not going to be me. I'm not the one I'm better, stronger, faster, different. You know, we all think we're different. We're not all really that different. You know, so you can't sit here with diabetes today at 25 and say to yourself, I'm just going to leave my blood sugar at 200 all the time, because it's safe, and I won't die today. Because this stuff will it's just scientifically it's going to catch up to you at some point. And and, and not only that, forget that the scary stuff. Your altered when your blood sugar is not in range, you know, you're you're shorter tempered maybe or, you know, easily confused or like there's a bazillion things they could do. And I know you could say, well, that happens when I'm low too. But you can fix a low quickly. You can't face a high quickly.

Justin Robbins 47:38
He? Oh, that's I know exactly what you mean. I can it's it's funny, and she'll she'll chuckle when she hears this but i can i can tell a huge difference in her irritability with now that she's not as high all the time. You know, I don't I don't upset her as easily or she doesn't, doesn't get aggravated by such such small, little consequential things. Right. When she's not high all the time. And I I can't there's there's no way that those two things weren't correlating. Because, you know, sometimes you just be mad that the, the the battery's worse, or old and the remote. Yeah. Well, Mandy, let

Scott Benner 48:21
me just say, if you're listening, I don't agree with Justin at all. I think you're perfect. This guy's obviously a problem. And so No, I do know exactly what you mean. It's, and it's not your fault. Like if your burgers 200. And you're snippy, it's not your fault, your this is not the you know, it's just like if you think back the old cars, and if you make your carburetor too rich, the motors not supposed to run with that much gas coming through. And so it chugs it chops, and because it costs because it's not balanced, right? And just because your body gets accustomed to it, you don't feel that your high anymore, it doesn't mean that the bad parts of being high aren't still happening internally. And I don't know that enough people even understand that. Right? You know, like it's, and then when you stop and really look at what I was able to figure out and what you've been able to figure out and other people too, I got some great notes this morning from people that are really fantastic. But if you can keep your blood sugar steady, anywhere, you can keep it steady anywhere. And that and then you get into that very childish thing that I really genuinely believe with diabetes is that you sort of get what you expect. Right? You know, if you try if you expect 100, I think you can get 100 if you want to understand the balancing of the timing of the insulin, you can get 100 without being low later. Once you are you know once you realize you might get low once this week, and you just say to yourself, I'll take care of it. Right everything gets better. Exactly, you know, so

Justin Robbins 49:51
it's a it's kind of funny, you bring up the whole car carburetor thing because that's actually what I what I do as a hobby is rebuild old cars and So that one, we were talking earlier about what got you interested in her diabetes, she used to have a, an old animist pump, that she had to unscrew the top, and pull out the cartridge and reload the cartridge. And after I watched her do it, I thought I could do this better. And it got to the point where I could actually change her sight on her reload the Animus. And I mean, like, it was, like, from a movie with a gun scene, you know, where like, he can disassemble and reassemble it blindfolded. And, and it was my involvement with that pump that I think really kind of showed her that, wow, this this guy's really, you know, he's really, really into this.

Scott Benner 50:52
And since he can't seem to keep batteries in the remote correctly, we're gonna have to let them do something. So

Unknown Speaker 50:56
right. Yeah, exactly. So

Scott Benner 50:58
you're pretty, you're pretty much into this right now this process of moving her agency down and getting more getting bolder and things like that. Do you see? Is it possible that once the up and down stops, this is going to be interesting for you, Justin, once the you stop chasing blood sugars, and she's stable more frequently. It's gonna require less of your intervention. Right? Well, you lose a little bit of who you are. Do you think or do you think you are? Are there things in your mind that you think Justin would like to get back to some of this stuff that he doesn't do any more because of this? Because I feel like I can't wait to not be as involved in anything but yeah, how you feel?

Justin Robbins 51:40
I mean, yeah, I know I've always kind of been a I've always been independent and did my own thing, regardless, but she's always been my number one priority. Even when I go to work if I see like her blood sugar kind of creeping up. You know, I always wish there was a way I could like bolus her from my phone without her even though

Scott Benner 52:02
remaining slots just

Justin Robbins 52:04
but like I'll I hate to call her and wake her up. But if I see her blood sugar creeping up, I will call her and wake her up. So yeah, it would be it would be nice to not be as I mean, as much of a as a godsend as the Dexcom is, it would be nice to not look to look down at my phone every 15 seconds, I probably look like a teenage girl at work, where I've just like, checking my phone, like mid conversation. I will I will, like look at my phone people like really? Like, I'm not checking for text messages. You know, like, well, this is important.

Scott Benner 52:41
I believe that'll go away for you as as things get better, because I say it on here all the time. I 100% don't believe that people leave me I never looked at my phone. I am if I if if I'm not being told that Arden's blood sugar's outside of a 70 and 130 range. I don't look I when she's at school, I'll look maybe about 45 minutes before she's supposed to eat to see if I have to do any like little bump around with food or insulin to get ready for the Pre-Bolus. But other than that, I never ever ever look at the CGM. So and I think that that will come eventually, because you'll just trust it. You'll just trust that if it's in this range. It's not the CGM. Like take the data aside, right? After you go through these processes enough and enough enough times, you will get what you expect. And you will expect the right thing it won't be guessing anymore. It'll be I know where your blood sugar is. Yeah, I was just I was I think I was doing recording one of these the other day. And I said to a person so I, you know, as we got on, I'm like, I just did this and this and this. And by the time you and I get off her blood sugar is gonna be and I picked the number. And he never looked at the CGM again. And when we got off the podcast, that person said, oh, what's Arden's blood sugar. And I was off by two points. Two, and I was moving a higher blood sugar down, and I still knew where it was gonna go. And that's not I want to be completely careful, everybody listening, that's not me, I'm not special. I don't know, something you don't know, I've just been through it enough times. That I know if we take a BNC and put them together, it's going to equal 102 blood sugar. So you'll get to that point where you'll just trust so completely, that what's going to happen is going to happen, that it won't even occur to you to check on it anymore. And then if it doesn't happen for some reason, something will beep and vibrate and the next thing you know we'll take care of it well before it's an issue. So right. So I mean the technology is I really want to say this Justin and please everyone listen for a second. I do take ads on the podcast for for technology that I am 100,000,000% sure works. And then 100,000,000% short is the key to how I can't make this stuff happen. I would be saying this if they didn't advertise on the podcast. But technology is been the way that I figured out how to do this. And I'll you'll hear from people say I inject and I have a six a one C, and I'll be like, that's great. And that is really wonderful. But you do not have the empirical data from the last 30 days to see how you got to that sex. Right? You'll never really know if your blood sugar was 60. Overnight, every night this week, you know, and and this technology allows this to be easier, and it allows it to be more precise, and up to me and allow us to be much smaller part of your actual consciousness. So I think you get to that.

Justin Robbins 55:41
Well, and also, I mean, before we were on a CGM, or array one sees where we're lower because they getting as much data, you know, the only data they were getting for us from what they could download from our pump, right? And what you know, when she would test, so, you know, with that with that record, and they're only getting, you know, however many times during the day, versus, you know, every couple of minutes throughout the entire day,

Scott Benner 56:11
absolutely. Listen, I could Arden's blood sugar is not always 92 Do you know what I mean? But I could test her blood sugar every day at certain times, and make her blood sugar readings look like her blood sugar's always at one spot, I would know when to test to keep that number down. And sometimes, it's because of where people tell you to test the doctors like that, you know, test three hours after your appeal. Which is to me insane. But if you're a person who three hours after your meal has a good blood sugar, and you always test it like that, but your blood sugar went up to 300 for a while. Right? Well, that's not quality. And some people might say, well, but it ended up at 90. But But I'm telling you, there's a way to stay at 90 without ever going to 300 you just have to reallocate when and where the and how much the insulin this. But it's it's not a hard concept once you see it, but it is hard to get over that idea of like, well, if I did this, and she went to 300, but she came back to 90, then then what else would I do? Because if I used more insulin to stop the 300, then I go past 90 except it's not about more insulin, it actually could be less insulin just has to be timed better. It could be Pre-Bolus. It could be you know, it could be an extended bit mom bolus, it could be extra bazel, less bazel. At certain points. It's, you know, and even that is not nearly as and I'm going to ask you Is it as much work as you thought it was going to be when you heard me say it?

Justin Robbins 57:38
No, no, it's not. Right.

Scott Benner 57:40
It's more work to fight with the highest right?

Justin Robbins 57:42
Oh, definitely. Yeah, finding a high is is the worst. And, and and also, I mean, your your talks on Pre-Bolus. before meals have have greatly greatly helped out with that. We we always Bolus now. Oh,

Scott Benner 58:01
I'm touched. That's excellent. And listen to I just interviewed a guy from novo Todd Hobbs about the the new faster acting in insulin they have come I think they're calling it fast or something or fast, but I'm not sure. But it's very possible that the need for as much of a Pre-Bolus or any Pre-Bolus at all, I'm going to try it when it comes, you know, when it's available in the US. We're going to get it we're going to try it. And and maybe that takes that away a little bit. Maybe doesn't I don't know, but we're gonna give it a shot. But in the meantime, it doesn't matter really. Because right faster actor, a fast acting insulin that works faster than the instant I have now. I'm still going to need to know how to time it, how to stretch it out how to put it in the right places. So it's not going to change anything other than maybe the timing, the timing of it. Yeah. Right. So. But if the timing of it means as I'm sitting down to eat, there's no doubt that thinking about Pre-Bolus and socks, like you don't, right, you don't want to do that, you know, so maybe that'll take that away. Maybe it won't, we're gonna find out, I guess. Arden zendo already said they'd write the script for it. So we're gonna try it as soon as it's available. Just then we are, as I promised, coming up on an hour flew by because you were fantastic. And I just want to make sure that we hit the there's not something stuck in your head that like I wanted to say this, and I didn't say it.

Justin Robbins 59:26
Now, we pretty much covered everything. I just, you know, I just anyone out there listening. And also I work with a couple of diabetics who I've turned on to your podcast. And one guy the other day told me his day when he was 10. And I said, Here, write this down for you. Because it's that important that you you remember to listen to this and go talk to a doctor. Because, you know, I want you I want you to experience the same things we have but anyone listening? Just? It's it's great advice. I mean, we we've dropped, you know, you know, to 7.3 from 8.2, in a matter of three months, just becoming more more bold with insulin. I mean, it's it really is that that simple, just stop overthinking it so much. That's pretty much it.

Scott Benner 1:00:25
It's interesting as simple. The advice is, and of course, Justin, nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making changes to your health care plan. But at the same time, I appreciate what you're saying very much. And, and I'm going to tell you right now, it is much simpler than it seems. And it's, it's tough, because when you're in the throes of it, nothing seems more difficult. Yeah. Right. But then you get the right tools, and then you realize it's not so bad, right? All right job, right, Rachel? What's the saying, I forget, right? All right job. You can't, you can't wallpaper with a hammer. So, you know, once you've got the right stuff, then you're then you're onto it. It's it's it still sucks. It's still diabetes, but it's way easier. And I appreciate you sharing it next time, don't write it down, just take his phone, and subscribe. I appreciate anyone, by the way, listening should just grab other people's phones and subscribe to the podcast with it. I would greatly appreciate this. Justin, you were really delightful. And I have to say that, um, what you're doing is something that I'm thinking a lot of parents of kids with type one right now are listening to and you're mirroring their experience, but with an adult. And they know how much effort it is to love and care about somebody that that much. And I also want to say to Mandy that I think it's really kind of remarkable that she's able to be that free and open with diabetes in a way that I don't think a lot of people could be, you know, and it's leading to good things for which is, I think a lesson inside of the inside of the store to be perfectly honest.

Justin Robbins 1:02:02
Just one less thing about the openness we we actually both have matching, blue, blue ribbon tattoos with a little blood drop on them for for diabetes. So that always always grabs people attention. And you always, you know, we're always very open to explaining how what a big part of it is for our life. And, you know, she at by being a nurse, she's a natural caregiver, so she always wants to help others. Yeah, she's definitely she definitely wanted her her story shared as well.

Scott Benner 1:02:32
That's cool. But the advocacy part is so important just to tell other people about it. And by the way, by the time this comes out, it'll probably be long passed, but I'm gonna see samples of the bold with insulin t shirts I'm having made. So this week, so they'll be out in a week or so I'm hoping maybe maybe two weeks, I'll be able to start just getting them to people selling them and getting other people but I couldn't believe I made this little like, I don't need this little graphic. And somebody was like, I make a great t shirt as you think so and then like 100 people like Yeah, sounds like that sounds like I should make t shirts. So uh, so we're gonna, we're gonna do it. But to figure out the logistics of it later, just because I'm not a mailing house. So I'm not 100% sure how to do all this, but I'm gonna figure it out. And and get one that anybody who wants them, but I think you'll think they're pretty cool when you say, um, so

Unknown Speaker 1:03:18
yeah, absolutely.

Scott Benner 1:03:19
I mean, I really, I really do appreciate you being interested in coming on and, and, and taking our time and doing this. And please give me a hug for me and say hi to her.

Justin Robbins 1:03:28
I will and I really appreciate you having me on as well.

Scott Benner 1:03:30
Now, please. That's, that's what this is. And I just I just sent a note to somebody the other day who's like, the podcast did this for me this room in my talk back and forth for a minute. The last thing I said to him was, you know, one day, you should come tell your story, because your story will be that valuable to somebody else. And I think nobody believes that. But it's, it's 100% true. It's you guys are driving the podcast. It's not me. Like I've never Besides, you know, companies, you know, like, I think I'm doing the Omni pod CEO thing. She she and I are talking next week, besides companies and it's like sometimes famous people and stuff like that. Everyone you hear on this podcast reaches out to me, I don't reach out to them. So it's it You guys are perpetuating your own care in a really interesting way. You know, all I do is answer the email and say that'd be great. And then we do what you and I just did. I have almost the smallest partners.

Justin Robbins 1:04:25
We probably mentioned your podcast probably several dozen people about two months ago, maybe a month and a half ago we were at a diabetes conference in Orlando. And there was a lot of newly diagnosed diabetics there and you know we we kind of hinted around with well you know, it's important to get a good endo it's important to you know, be good with insulin and yeah, pumps important everything, but you're going to want to listen to this guy because he just explained That better. Oh,

Scott Benner 1:05:01
I appreciate it now. That is my only superpower I explained better. Can you imagine in the Justice League that's my power.

Justin Robbins 1:05:12
My people getting into a lot of the trouble that they started out in.

Scott Benner 1:05:21
Thanks so much, Justin for coming on and sharing your perspective. And thank you Mandy, for allowing Justin to talk about your diabetes on the podcast. Thank you also to Dexcom and on the pod for sponsoring the show links in your show notes links at Juicebox podcast.com. Or you type in my omnipod.com forward slash juicebox word dexcom.com. forward slash juicebox. Now the music's gonna stop, but I'm gonna keep talking. I really want to thank you guys again for sharing the podcast. Also, the ratings or reviews on iTunes continue to pile up, which I really appreciate but the sharing is what spreads it out. And I thought you might be interested to know where the podcast was heard just in the last couple of months. So I'm gonna list off some countries US and Canada, United Kingdom, Australia, Spain, Ireland, Sweden, Germany, Switzerland, Portugal, Norway, France, the Netherlands, China, Japan, the United Arab Emirates, Denmark, Iran, South Africa, Australia, New Zealand, India, Singapore, Mexico, Lebanon, the Ukraine, Saudi Arabia, Italy, Greece, Argentina, Kuwait, Israel, Indonesia, Belgium, Egypt, Russia, Peru, Aruba, Romania, Bangladesh, the Philippines, Pakistan, Turkey, Puerto Rico, Korea, Costa Rica, Poland, Guatemala, Croatia, the Cayman Islands, Bulgaria, Europe, the Czech Republic, Kenya, Qatar, the Dominican Republic, Serbia, Vietnam, Belarus, Panama, Zimbabwe, Iceland, Slovenia, Georgia, Slovakia, Armenia, Gibraltar, Finland and Oman. So the next time you feel like you're alone, just remember that there are people all over this planet listening to this podcast just like you living with type one diabetes.

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Scott Benner 4/10/18 Scott Benner 4/10/18

#160 Diabetes Fast Forward

From told to bold....

From being told her child has type 1 diabetes to finding the courage to be bold. Sara tells Scott how she got to where she is so quickly.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - google play/android - iheart radio - or their favorite podcast app.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello, everybody. Welcome to Episode 160 of the Juicebox Podcast. Today's episode diabetes fast forward is with Sarah. Sarah is the mom of a child with Type One Diabetes. But just like every week, this conversation is going to go in a number of different directions, something for everyone. I'd like to take a moment to thank the sponsors dex calm and on the pod you can go to my omnipod.com Ford slash juicebox or dexcom.com Ford slash juice box to find out more. If you're interested in tubeless insulin pumping on the pod is for you. And of course, I don't know how you manage Type One Diabetes without seeing what your blood sugar is doing. I found it very difficult before Dexcom. And now I find it much easier. Actually. There's going to be some ads today as there's going to be every week I'm going to read you Arden's a one sees over history show you just what this technology can do. Nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise Always consult a physician before being bold with insulin. Quick note, for the first few, I can't say for the first few minutes for the first in the beginning of the episode, Sara's microphones rubbing her shirt, but we figured that out and stop it.

Sarah 1:14
My name is Sarah, I am a mom to two kids. I have a five year old son and I have a seven year old daughter named Emma, who was diagnosed with type one back in August of 2016. So we've been at this about a year just over a year.

Scott Benner 1:30
And I just shared with Sara right before we started recording that I don't remember why she's on. She's gonna remind me now why she's coming.

Sarah 1:41
Well, you thought it you thought it was because I was gonna you know, give you a hate mail or something. But it's actually quite the opposite. I'm on here because I am a Juicebox Podcast grew up. I would say that's what my husband calls me

Scott Benner 1:54
to think that that's exists in the world the thing Yeah, much I tell your husband I said I'm sorry.

Sarah 2:01
Well, I had dropped you a few notes. We've been getting some good Awan fees. And every time I got my a one seat bag or my one seat back, my daughter's a one seat back. I was messaging you to let you know. And then this last time I finally said, I'm not trying to get a pat on the head. I just I'm so grateful. And I just wanted you to know and I just every time you said your intention for the podcast was to fast forward people I'm in my kitchen screaming that's me. That's us. It's happening. And by

Scott Benner 2:30
the way, Sarah now, and my wife would just give me endless this if she heard this, but now I 100% remember all of our going

Unknown Speaker 2:39
okay guys.

Scott Benner 2:42
I am. Listen, this is not a profession for me. I can't be held accountable. 24 seven. No, but I like what you do. And I hope it doesn't surprise you or make you feel less special. You're not the only one who sends a note once in a while and says oh

Unknown Speaker 2:58
no, no,

Scott Benner 2:59
no, no. So So sometimes it's hard for me to I'm notoriously bad with names. So Oh yeah, I remember things in ways that. So here's an example. I've been playing Words with Friends with somebody in the diabetes community for years. And their handle reminds me of the weapon from one of the Avengers movies, I believe it was called the Tesseract.

Unknown Speaker 3:27
Okay, that's not

Scott Benner 3:28
in any way how his handle is spelled. But when I see it, that is the word I hear in my head. wife says that I have incredible narcissism, and this is why I don't remember people's names. I disagree with her. As as I'm assuming a narcissist would, but I don't believe it. Nevertheless. I think she's saying it in jest, but I can't tell. But But I just really terrible with names. So I remember people like she'll come home and she'll say something about woman at work. And I'm like, Is that is that the lady whose daughter did this thing and that and this? And she's like, you remember all that? I'm like, Yeah, she goes, What's your name? Michael. I have no idea. Well,

Sarah 4:07
you remember the details? You're a detail guy.

Unknown Speaker 4:09
Yeah, I don't think that's true, either.

Scott Benner 4:14
So let's jump right into it.

Unknown Speaker 4:17
Okay, this pot.

Scott Benner 4:19
So, so you are, I've said it a couple times. I'll say it briefly here. I don't think of this podcast as an art form. But But I make this I make this I draw this, this parallel to it. I think sometimes when people create things, it means one thing to them. And then it means something else to the people who are consuming it. And I don't know that the person creating it can ever put themselves in everyone's position. So you're here doing this thing that I just spoke about myself in the third person I'm here doing this thing that I realized because of feedback is being is valuable to people. But it's probably valuable to people in a bunch of different ways that I didn't intend, which is great. And, and at the same time, I'll never know because I don't speak to most of you. And so it's a weird position to be in on my side. All I know is my intention. My intention was I thought that I could. I thought that if you spoke to somebody and listen to other people talk, people could get fast forwarded through diabetes a little bit. That was just sort of my, my thought in the beginning, when you hear that it's happening for you is very exciting. So yeah, tell me a little bit about, you know, give me a little diagnosis, and tell me what happened. And we'll start from there.

Sarah 5:36
Okay, um, yeah, it was last summer. And Emma was six at the time. And all of a sudden, I noticed, you know, classic, she's drinking a lot. She's going to the bathroom a lot. But it's summer, and it's hot. And she's running around, and who thinks anything of that. And then it just kind of it stepped up from there, where we couldn't leave the house where she wasn't asking for a bottle of water. And she'd drink like the entire bottle of water. And five minutes later asked me for more. And my mom hit was actually a nurse at a high school, and had talked about her diabetic students. And for some reason, it stuck with me that excessive thirst and urination was a sign of type one. And so right away, I don't want to know what I know. But I know what I know. And of course, Google confirms everything that I'm thinking,

Unknown Speaker 6:32
darn that Google.

Sarah 6:35
And so I finally took her in. And it was just this like, horrible sense of dread taking her and hoping it was a UTI. I knew it wasn't a UTI. And they found glucose in your urine, and then they did a finger prick and was too high for the meter. So we did a draw and her blood sugar was the close six. Yeah,

Scott Benner 6:57
sir. Can I ask you? Is your is your microphone touching something?

Unknown Speaker 7:02
I don't know. Is it?

Scott Benner 7:04
Are you moving? I just hear a little like, I hear this.

Unknown Speaker 7:08
Okay. When it's

Scott Benner 7:09
fine. everyone understood everything you were saying? Okay, so you go into the hospital. It's exactly what you expect. Because we all have Google at this point. It's not too hard to figure out. Would you say that you prepared yourself before you went in? Or were you a little like, did it still pull you over? What was the initial feeling like,

Sarah 7:28
I was definitely still stunned to be hearing it out loud, you know, verified by a doctor and but I knew I had done some reading and I figured if this was going to happen, that we'd be on our way to the hospital. So I wasn't surprised by that. And ironically, I did not realize this until a month after diagnosis. One of the things I read the day I took her in was your story of diagnosis with Arden. And I i did i didn't connect the dots till months later, but and thankfully, Emma wasn't in DK or anything like that. She seemed fine. But I knew that I had a grandfather with type two. And I knew that 300 was a really high blood sugar. So when they said 606 I I thought this isn't even possible. Double really high. Yeah. Like that's not possible. She wouldn't be standing here.

Scott Benner 8:19
So when you googled you found my blog? Yes. And you tell that story about us being on vacation Arden being dying? Yes. vacation. Oh, wow. And then you found the podcast much later, but not through the blog.

Unknown Speaker 8:31
But not through the blog. Yep. Not doing a very good job with that blog. I'm sorry.

Sarah 8:36
I actually found your podcast because I wanted I was looking at Omni pod. This was only a month after we were diagnosed or she was diagnosed. And I was searching on podcasts like and you know, iTunes podcast app for anything having to do with Omni pod. And that's how I found you.

Scott Benner 8:51
Oh, wow. That's really cool. glad you did. Found the podcast and you're like, Alright, so what is your intention that like? Because I guess, let me ask you this. What is the doctor tell you? What do you What's the information you leave with after the diagnosis that leads you to think I should figure out more than what I've been told because I'll be honest with you, when we were told now, so long time ago, and the internet wasn't quite what it is now. But when we were told Arn had diabetes, we were just like, Alright, well, the lady told us what to do. Yeah, you know, I never considered there should be more to figure out, I guess.

Sarah 9:29
Well, I, I, we went through our two day education, and I really left feeling like what they they really wanted us to keep our expectations low. And that's just not my personality. That's not the way I do anything, really. And we left and they basically said, you know, this is really hard. It's really hard to manage the kids so you know, don't shoot for perfection. Here's, you know, her range was like 80 to 200. And I just remember thinking, I don't want her blood sugar to be 200 Mine isn't 200 That makes no sense to me. So I searched around when I got home. And of course, I found these giant Facebook groups where everybody The sky is falling, and my kid almost died again last night. And I'm just horrified. horrified. Within a week after we got home, I'm doing what they're telling me. And I called we got home on a Friday, and had her lantis was at like five units. And I was checking her overnight. And she was always in the 60s overnight. And for me at the time, I was freaking out, like, grab the juice box. Let's go. And so I on Monday morning, I called in right away with my numbers. And I said, You know what, I don't I think, you know, there's no food, there's no active, you know, meal insulin on board. I think it's the, the long acting. And they said, Well, yeah, let's dial it back a half unit and see how that goes. And then it occurred to me that they're just guessing. Yeah, they're guessing. And I'm like, if they can guess I can guess. Good for you. I mean, it was it was it was both terrifying and in powering at the same time, because I realized they I nobody knows exactly what to do here, right?

Scott Benner 11:28
Because there's no data. It's just, you know, you're like, Hey, this is happening. Can you help me? And the person says, Can you hold on one second in the background? you hear this? You go just throw a dart at a wall?

Unknown Speaker 11:38
Yeah.

Scott Benner 11:39
Do you have a bunch of responses up on the wall? And let's try decreasing it by a half a unit, like spinning the wheel while it's waiting to the end? And it's based on? Because it's based on some concept, right? Like, let's let's move it down a little bit. But you you read through the rest of it, the idea that this isn't based on like, there's not some rulebook? That's right, that she flipped the page 74 on it just told me what Yeah, right.

Sarah 12:07
Yep. I know. And that's what I was hoping I would get calling in and then, and then I made that first move myself that first week, I dialed it way back. I think she told me a half unit, I did a full unit. It wasn't enough. I mean, at the end of that week, I had her down to one unit of lantis. And that finally worked out that I was not going to wait for them to tell me it was okay.

Scott Benner 12:30
Sir, I still hear the noise. If you're not moving, it might be something else.

Unknown Speaker 12:33
I know. I don't think I'm moving. I'm trying to sit still.

Scott Benner 12:37
Is there a fan on in the room? air conditioner?

Unknown Speaker 12:40
Nope. Here. Is that better?

Scott Benner 12:45
It's tough. It's only it's when you speak so your mic is your mic does this great thing which a lot of people do, which when you're when you're not speaking it doesn't sound okay. And so I can't tell them. Oh, you know what?

Sarah 12:56
I can tell them? It might be I have this like shirt on with a big color. Is it better now?

Scott Benner 13:03
I haven't heard

Sarah 13:04
Oh, it's probably rubbing against my collar. I'm sorry. I need to think about that.

Scott Benner 13:09
It's fine. It's fine. You've just named the episode we're going on right now.

Unknown Speaker 13:15
I shouldn't have picked this shirt.

Scott Benner 13:19
This is not my So okay, so So what do you think? You said it's not your nature. Right? So is that just all it is, is that you think that you heard something that didn't make sense to you? And instead of going well, that's what the doctor said, You were like, No, I don't care what the doctor said. That doesn't mean

Sarah 13:37
Yeah, there was there were a couple little things in the hospital, there was one CDE there that had type one. So I like zoned in on her immediately. I wanted to know what she thought about everything. And she mentioned something just very, like under her breath. Almost like nobody would hear her about when to give insulin before a meal. And they were telling us give it give it right away eat, you know, just like we're doing in the hospital? And she said under her breath? Well, I think, you know, ideally, you'd give it 10 to 15 minutes before and then they kind of glossed over it moved on. And I thought and I was I wrote that down right away and thought, Okay, well, why wouldn't I want the ideal situation?

Scott Benner 14:21
And why did she say that? And then everybody else just sort of looked at the ceiling.

Unknown Speaker 14:24
Exactly. Exactly.

Scott Benner 14:25
Do you think it's because the

Sarah 14:26
other people don't know? And she knows because she has type one? Or do you think it's because they have because they don't tell people they just I think they just don't tell people that I think the least common denominator thing and you know, you're so new and I get it I get the whole thing why they do it that way. And it's just it would be helpful, you know, to get that some of that information up front. So you're not just thrown in and seeing crazy numbers and, you know,

Scott Benner 14:56
if you're if you're CD, listen if you're an endocrinology And you're listening to this, why you wouldn't just say to somebody, hey, look, it takes the insulin a little while to start working. But in the first couple of days, let's not overwhelm you. But here's here might be the plan moving forward, just pay attention to these things. If you see a spike of raising the blood sugar, maybe you could move that insulin ahead a little bit, give it give it a chance. I don't know why you wouldn't just tell somebody that, like, you know, don't do it right now. But in the future when you feel more comfortable, just to give them the idea, because otherwise you just go home and think I'm doing everything. They told me. It's not working. I'm screwed.

Sarah 15:34
Yes, that's exactly what you think. And you're too I was testing it. Weird times. Again, I think it's just my nature. I wanted to know. And, you know, she was always high and yeah, you get really frustrated them doing what they're telling you to do, and it's not working. And there's got to be something else. There has to be something better. And then you know, I'd seen a few people online thing, you know, that they were their kids a one C's were in the sixes and I was like, well, it's possible, then, you know, and then I found you and the rest is kind of history.

Scott Benner 16:07
Hey, guys, today we're gonna talk about on the pod Arden's endo plane, it was yesterday. Hurry one C was 5.9, I asked the endocrinologist to pronounce the entire history of ardens, Awan C's, she gave me all the way back to 2006. Very first one, they were 10, nine and 8.5. And my gosh, they were like that for a long time. Then the day I found on the pod, everything got easier. And re once he came down more, but I still didn't completely understand how to use insulin, I was still afraid, got Dexcom, I got a little less afraid. And then it's amazing when you look at this list to see right where I decided to use this technology as more than just to convenience. an insulin pump isn't just not having to do shots, it's having the ability to make smaller boluses, more frequent boluses to manipulate your insulin by doing temporary increases and decreases to your basal insulin. It is so much more when I absorbed that and began to use the Omni pod that way things just took off, you can go to my omnipod.com forward slash juice box or click on the link in your show notes. To get a free no obligation demo pod. Something you can hold and touch and try on and see what you think after that, if you're in it's a real simple process. When I look at these agencies, I can't believe that I spent so many years using injections and not understanding how to use insulin 8.48 8.2 8.3. And then all of a sudden, here it is I figure it out 7.9 7.766158566615981 Cs,

Sarah 17:56
we're in the sixes. And I was like well, it's possible, then, you know, and then I found you. And the rest is kind of history.

Scott Benner 18:03
Because that is all you have to think is that if if and that's always been my contention if it's happening and you're not doing it, then it seems like a big idea. But it's not so much that you're just not. I guess it does sound stupid when I say it, but I guess you have to listen through it a little bit. If If someone's doing something, and it's working for them, and you're doing something, it's not working for you, you're just simply not doing something they're doing. So it sounds like it sounds big. When you don't know anything about the thing you're talking about. I get that. But that's why it's incumbent upon people to come along and say hey, here's these five or six things you should probably be thinking about because one of these might really make a difference for you are all of them in some, you know, some combination.

Sarah 18:48
We Pre-Bolus you know, consistently at home, we struggle out and about, you know, like birthday parties and things like that. where the food comes out, and she's looking at me like you know, I'm not gonna wait 10 minutes here. She's like this cake. So move it or lose it. How old?

Unknown Speaker 19:08
Is she seven now?

Scott Benner 19:09
Yeah, it might be a little difficult. I just you know, what I've realized recently is that when you can't Pre-Bolus as much you just Bolus exactly what I do. Yeah, yeah, it just because then you just, if that makes sense that to somebody listening, the Pre-Bolus is perfect, because in a perfect situation, use less insulin. And I don't want to think you shouldn't think of this in my mind as a as an either or I think you should always be Pre-Bolus should always be giving the insulin time to get to work before the food gets to work. But at the same time, if you do get one of those situations, it really is kind of helpful just to Bolus the amount you need plus some amount in your head that you think well and here's some because I didn't Pre-Bolus and here's some to try to keep this bike away. And well, you know, I just yesterday, yesterday morning, such a great exam. Arden's got a head cold, right? And so it started developing yesterday. So she gets up in the morning, she's real stuffy. And her blood sugar is like 65. And she's upstairs with my wife. I'm down here, like thinking about making a big breakfast for everybody. So my wife's like, I'm gonna jump in the shower, I shut her bazel off for a half an hour, because she's still kind of waking up. And I was like, okay, so she comes downstairs, you know, I have to run to the store because I don't have all the ingredients that I think I have. And in that time, my wife keeps her bazel shut off for even longer gives her a little food, it doesn't move her in her blood sugar. And so my wife said, Well, I gave her more but I didn't bolus for it. And I said, They're here. I told her, I said, this is a really interesting space for her because my wife still like learning the stuff that we talked about in the pie. Right? I said, Basal was off for an hour. She was only 65. She was studying 65 you gave her carbs. And she and then my wife said, but her blood sugar didn't go up. And I said yes. But it was going. Yeah. And I said, and that's the that's the next step is to understand. You can't sometimes you can't treat what you see, you have to treat what you know is going to happen. Oh, and that's a real leap to make, you know, like, do I how do I Bolus my kid whose blood sugar six o'clock I've been trying. I've been trying for an hour to get up. But if you stop and look back and do the math, you shut the Bayes law for half an hour for an hour. Your blood sugar hasn't gone down. It hasn't gone up. yet. You've added carbs. carbs always need food. When carbs don't need food. It's because something else is taking care of the carbs not because carbs just stopped magically needing food this hour. That's not and I know it feels like that to people sometimes like well, I you know, I just gave her food and gave her food in her blood sugar didn't go up. Like it's like she you know, you hear people say it's like they're cured. What it's like is that there's something else pulling your blood sugar down that you're not aware of, doesn't mean doesn't mean it doesn't exist because you don't know what it is. And by the same token, once you can see this steady number that's not moving, and you've restricted insulin and you've added carbs your next thought has to be 65 or not, I have to Bolus and so I get back to the house. Which by the way, the the ingredient I did not have was buttermilk because I was making waffles from scratch. And so I got back to the house with all my stuff. I start cooking right away. I'm like, this is great. Everything's gonna be fine. I my wife's making bacon. I'm like whipping up fresh waffles. And I hear Oh, wait, why is that happening? Because I'm making waffles that doesn't make any sense. And and she's like, 140 Oh, man. And I was like, What? So and So Kelly explains everything that happened. I was like, Okay, now, lots of things could happen in that situation. I've seen everybody online have every, you know, reaction don't demand what I did was I said it would take a unit and a half to stop the arrow fast would take another unit and a half to bring it back to where I wanted it. And I thought the waffle was going to be eight units. And we're not eating for 20 minutes. So just gave her 11 units.

Unknown Speaker 23:10
Holy cow.

Scott Benner 23:13
Like here, here's now that there's a lot of there's a lot in there like I have to trust she's going to hit the wall, right? I have to you know, so I looked at her and I was like, I know you don't feel good, but you can eat the waffle. Absolutely. And I was like, excellent. And so here he goes. 11 minutes. She's I don't even stop to see what happens afterwards. I just cook the food and I give it to her. And about an hour later I said to my wife was like, hey, look at Arden's blood sugar because the beeping I had not gotten any beeping so so once ardens punches, you know, it's 120. And I was like, Whoa,

yeah. And by the way, she didn't finish the she didn't finish the whole Oh, wow. So she left like four or five bites. The wallflower was a big like Belgian waffle. Yeah, no, so she looks like four or five bytes of that. But I also only thought that eight units was for the waffle. I didn't stop and think we use you know, low carb sugar. It still has some carbs in it. You know, she had you know, bacons there's some fat changes. Everything's work and you know, blah, blah, blah, blah, blah. But in the end, the answer was, hey, my blood sugar is high and it's going up really fast. You need insulin, a lot of insulin. Go now. Wow.

Sarah 24:18
I mean, she leveled off at 120. Maybe it was good. She didn't finish the last couple of bite.

Scott Benner 24:23
Isn't that Yeah. Because Because what people do sometimes is right, they're like I gave you in some fat eat everybody. Except, except you're not some computer. And you didn't you know what I mean? You didn't figure out exactly how much you try it next time. Next time you make a bolus, right? And you and you're like, oh, three units put in three and a quarter. Nothing different will happen. Like it's just it's not. It's not like it is,

Sarah 24:47
trust me. It's fine. Yeah, we're still a little stuck in the like Bolus thing for like every little thing. And I'm trying to get away from that and pay more attention to the units going in there. just changed so rapidly in the first year though, cuz she was honeymooning and then this and that. So her carb ratios are like half of what they were when she was diagnosed. But I'm trying to get there, like, I know, a piece of toast takes a unit now and you know, that kind of thing. But it's, it's trial and error, which I can't stand. I can't stand trial and error, but it is that's what it is.

Scott Benner 25:22
And so that's even interesting, too. So I, you know, at this point, it probably fair to say I preach on here about that. You just have to do it. It's got to work or not work to some level, you take that information back with you. But that's not your so it is in your heart. You want to be a person who's like, I know what to do. There's a rule here for this. I follow it. And if I follow correctly, it works. Well. But you broke you broke away from that.

Sarah 25:44
Yeah. Oh, yeah. Because Because Because you have to go with the feet. I mean, I'm having those matrix moments. Finally, right. They're not all the time. I'm still hustling quite a bit. I look at the CGM a lot. But I'm finally having those moments where it's like, I know what's going to happen here. Because I've seen it happen 50 times. You know, and it's everything slowing down just a little bit. And, and but yeah, but trial and error. I didn't like it when the kids were babies, you know, in the sleep and all that I, I wish I could just dial it in. And I think, for me to emotionally kind of accept diabetes being a part of our, our lives and her life. I needed to find a way to manage it. And I think that's why I so like, I went after this. So, you know, intently. Was that now that we have? I mean, I don't want to use the word control. But or anyone sees you know, we have some good control. ish. It makes me I'm just so much more even emotionally.

Scott Benner 26:50
Yeah, well, because everything because you're starting so but here, let's not lose sight of this.

Unknown Speaker 26:54
How long has she had? Like a little over a year? 13 months? Yeah.

Scott Benner 26:59
So you're away. Yeah. Right. Right. Right. So you're having that feeling? But and you know, because I guess because we talked about it here. But you wouldn't know. Otherwise, if you didn't find the pockets you can find other people listen to you wouldn't know this. But you're so far ahead of how most people are in this situation? Yeah.

Sarah 27:17
I mean, I, I think I am. I mean, I know we have a court early. And we have there's so much more left to learn. And you never, you know, really know everything. But that's why I think I reached out because I'm just in my kitchen saying, We're the people you're talking about this happened for us. Like I didn't have to go through two years of struggle in high agencies to figure it out. I mean, it's just, it's amazing. It's been wonderful. I appreciate that this

Scott Benner 27:43
is happening for you like it just it makes me feel happy. Yeah, so thank you. And I've been married a very long time. I'm not used to I'm not used to women being this kind to me. It makes me uncomfortable.

Unknown Speaker 27:56
I'm sorry. I'm sorry. I just said, I'm a groupie. So

Scott Benner 28:00
you know, yeah. If you were to doubt tell me that I was doing something wrong. And it was something very small, very inconsequential for the world, then I would be more comfortable.

Unknown Speaker 28:11
I know.

Scott Benner 28:12
But But no, no, no, seriously, you're very kind that you're willing to come on and talk about this. But moreover, this is the episode that I've been. It's funny, as I said at the beginning said, I have no idea why I'm talking to you. But I remember why I'm so excited to talk to you. Because because this is what I this is the next step. Like until then it's just people have to believe it. You know what I mean? They hear it and they have to believe what I'm saying. Now, now you're coming on. And you're saying, look, I believed it, and it's worth and so. So this episode is basically me congratulate. That's how someone will hear it, by the way. Oh, one, there's one terrible review of the podcast. It's like that, guys. I'm like, Oh, geez, okay. But But that is what they heard, like, when I was trying to be positive for all of you, and trying to be, you know, hopeful for all of you. The only way I could really do that is by saying, Look, I'm doing these things. And here's the results. We're getting what she heard was,

Unknown Speaker 29:08
I'm great at this. Oh, yeah, no.

Scott Benner 29:11
And so and so. It's important, joking aside, it's important for people to understand that, that it's this works that like if you're at home listening, and then you just get out and go, I'm not gonna try this time that you shouldn't do that, like every download. I see. The thousands and thousands and thousands of people that have downloaded this podcast I want if you guys went forward, most of you would have a great success. And the rest of you would just get closer. And so, you know, it's just I know it's there. Like, you know, I mean, some people have extenuating circumstances and extenuating health issues that might stop this from being as valuable for sure. You know, I heard from one woman who said like, my insulin sensitivity is so crazy. I can't pretty okay. Now. Now. She might be Be 100% right about that. And she may have just been living with diabetes, so long as she's talked yourself into believing this is true. I don't know. Like, I can't tell that

Sarah 30:08
we I think the beauty of us being so new is that I was like a blank slate coming in, when I found your podcast, I found it less than a month after she was diagnosed. And what you were saying in the conversations you were having just made so much more sense to me than what I was hearing from our endo. And it was like, every time you shared a success that you had with Arden, and by the way, I love that you're talking about pizza and Chinese food and cake. And, and, and stuff like kids actually want to eat. Yeah. And you're doing it and you're having good results. That was just like a beacon of hope for me. That was not I didn't think you were bragging. You know, it's, it's like, oh, my gosh, someone can do if he can do it, I

Scott Benner 30:50
can do it. You know, listen, it's it's only one review. But it still made me cognizant of the fact that, you know, you can't like like, I didn't want to be the person who was like, Hey, I'm doing this near. You know, like, that's not wasn't the goal of this at all, and would never be my goal. But it still if you just came in from nowhere, and I guess maybe grabbed the wrong episode, or got me back far enough, when I didn't maybe know what I was doing with this as well, or something. You know what I mean? Like, I could see where that could that could happen. But I just I don't know how else to say that. It's just really gratifying to hear what you're saying. Yeah. You know, you know, I mean, like, it's amazing that it's working and what it makes me feel if I can give you a little look into me, is that what we really need to do with the pod? If the podcast is ever going to be a real like success? We have to talk endocrinologists, and yeah, not not not like, they need to know on day one, that this is how they should be talking to you. And if they did, then, you know, because I think the fear will always talk about the patient's you not being afraid, but I think they're afraid to Yeah, you know, and so the fears is still seeing everybody, and it's stopping everyone from doing probably better than they are right now. And I think that if we could prove, keep trying to imagine how to do that, like if you could get everybody to listen to the podcast to like, put their information down, like, Hey, this is my agency, when I started listening, and this is my agency three months later, six months later, a year later, maybe you could maybe I could take that data to, like a children's hospital or something like that, and just say, look, this is this is what people are reporting back from just being given more tools, I'm sure. You know, like, it would be cool. I don't know if that's something I can ever accomplish.

Sarah 32:34
That would be amazing. I know, I kind of been up. I'm an anomaly at our endo. And they kind of just look at me, like, how are you doing this? You know, and I mean, they don't?

Unknown Speaker 32:44
I did. I said, there's like a parent out there giving out this great information. And

Sarah 32:51
and that's how we're doing it. I mean, they don't they got to find something to pick out. So we do have we got we have some lows, I mean, not crazy lows, but I don't I don't see how you can run tight and not have some lows. But so they have always kind of talked to me about that. I mean, I have the I have the dex information to prove that she's not sitting at 50 all the time. And she's just, you know, she's her standard deviation isn't insane. It's not, you know, perfect, but at least I have that to back me up cuz I think they, they would absolutely assume that I'm running her super unhealthy low all the time with the onesies that we're seeing.

Scott Benner 33:27
And so when you say you have low sometimes what does that mean?

Sarah 33:29
I I consider like a low low anything below 60. I mean, we treat in the 60s. But I don't start really looking at it, you know, until maybe it's below 60.

Scott Benner 33:43
And then so she's 65. Will you like kind of base?

Sarah 33:46
Yes. Yep. Exactly. Yeah, it depends on what she's doing. I mean, if she's active, I'm gonna tester and treat. And but if she's, you know, sitting around watching TV, and she's 65 and steady, I'll just cut her bazel off for a half hour.

Scott Benner 34:00
Let's talk about Dexcom now, but let's go back to those a one sees and this historical list that I have here. And we're gonna go right to where the podcast starts in 2015. But you understand that I made sure that I knew what I was saying before I came on the podcast and Saturday. So really, let's move these around about I should really go back to 2013. January 2013 7.4. then all the sudden, that summer 6.5 6.7 into 2014 676265 2015. This is when the podcast starts 596160 it's getting interesting now, isn't it? Six to 60576158566061 and yesterday 5.94 years of a one sees between six two and five, six at 1.56 on everything. How does that happen? Where do those decisions come from? It is directly from the information that I received from the dexcom g five continuous glucose monitor. I use that feedback to deliver insulin with the Omni pod in ways that make these agencies possible in ways that keep away spikes, and crazy lows in ways that allow Arden to play softball all day long, without a varying blood sugar. The information that comes back from the Dexcom is fantastic. We didn't even talk today about the share feature about me being able to see what her blood sugar is right now, which by the way, she's at school, it's 90, go to dexcom.com forward slash juice box to find out more. Please keep in mind, these are my results. And yours may vary. But you'll listen to the podcast. So you know what I mean. dexcom.com forward slash juicebox tried today? Well, the great thing about no one knowing when these are recorded in conjunction or when they're listening to them is I can tell you that last night I saw this Facebook thread, where people were just talking they there was countless frantic people in this Facebook thread. My my kids are sitting at 85 and I don't know what to do. And I'm like yelling.

Unknown Speaker 36:10
Rejoice.

Unknown Speaker 36:12
You want

Scott Benner 36:15
to give him a juice boxes like Oh, okay. So these are people who have Dexcom who are looking at, we're looking at grant, it's been it's been at 65 for two hours. I was like, why are you not asleep? That's great. Yeah, yeah. And and, you know, I'm treating now and I'm trading then people just start coming on my kids low. My kids Oh, must have been 20 people in there. My kids were all up in their low together. There was one person in the thread whose kids blood sugar was actually low. Oh, gosh, the rest of them were just in a panic about what I thought were like amazing.

Unknown Speaker 36:50
Find in while there

Scott Benner 36:51
was a part of me that started like, I was like, Well,

Unknown Speaker 36:54
how am I gonna do this? Yeah, I can't

Scott Benner 36:56
do this. I can't What am I gonna respond to each and every one of them and tell them they're wrong? That's not valuable? And how am I going to even like, it's in writing, you can't have those discussions, if I knew I could have called each one of them. And made them feel comfortable about it, I think, but but you couldn't. And so now I click away from that thread. And now I'm like, a little heartbroken. You know what I mean? Like, like, because now there's 20 people who are gonna keep thinking that 85 and 95 are bad blood sugars, and, and they're going to continue on trying to drive their kids blood sugar back up to 150 and 160 while they're sleeping. And, you know, I just, I felt bad about it. And at the same time, there's genuinely nothing I can do about it. Yeah, I do as much as I can do here. And that's it. But it's just fascinating to see that you're like, Hey, 65 Yeah, we could probably we could probably get this to drift off. Sure. Yeah. And it will my daughter, like I said upstairs yesterday morning, woke up. She's about 65. One point, she was 7072. I tested to make sure the CGM was, you know, right. And it and it was, and at one point, she was actually 75 I think when she said it said she was 69. And I was like, Alright, so we you know, she's fine. Yeah, you don't I mean,

Sarah 38:08
yeah. And I think Emma does not feel low until she's in the 50s. She feels fine at 65. And if she was having symptoms or something, excuse me, I would step in. But if she's fine, and we're fine, then she's not moving around too much, then we're good.

Scott Benner 38:23
Y'all see, I mean, you don't want her budget to be 65 for No, but for you know, a little while to get it to come back up without driving it the 180 I mean, that's fine. It's not just fine. It's fantastic. I used those sometimes those 65 some kids use the gummy vitamins.

Unknown Speaker 38:39
Oh, yeah.

Scott Benner 38:40
I used to do that for art. And this is a perfect time for a vitamin. Oh, yeah. Cuz that'll move your blood sugar like just 10 points. Yeah,

Sarah 38:49
yeah, I use like half a glucose tab. She really likes glucose tabs. I don't I have bad they look awful to me. But she likes them. So I'll use like half or a quarter like it. Yeah, she's pretty sensitive to carbs. So it usually does the trick.

Scott Benner 39:02
Yeah. Artem was the other day at school as a half a juice and she drank half and she's like, I'm really thirsty as I drink your water. Because she just wants to finish the juice. And I'm like, man, that'll make it's gonna do too much. Yeah, it's gonna push your blood sugar too far. I told her if you if you finish drinking that juice. We're gonna need to ball this a little bit. And she's like, I'll just drink the water. That's how hard to get kids to drink.

Unknown Speaker 39:25
Oh my gosh, I know

Scott Benner 39:26
her. Her head cold right now is keeping her blood sugar amazingly stable.

Unknown Speaker 39:31
That's good.

Scott Benner 39:32
It is really fantastic. Actually. The last 12 hours she's been between 70 and 110.

Unknown Speaker 39:38
Wow. That's amazing.

Scott Benner 39:40
In 24 hours has been two spikes. One was 160. Okay, one was one looks like it was 180. Okay, but they were very

Unknown Speaker 39:51
short lives. Yes,

Sarah 39:52
that's kind of my thing. When I look at my 24 hour graph, I'm always I have my height set at 140. And I don't want Anything above 140, but if it is, I like to see that quick spike up and down, you know

Unknown Speaker 40:04
where I get it back pretty quick. So, which I believe my blood sugar is probably doing too. So yeah, exactly.

Scott Benner 40:10
Yeah. So I think that that's fairly Yeah, I think you're doing as well as you can in that situation keeping things fairly

Unknown Speaker 40:17
trying to keep it even normal.

Scott Benner 40:19
Yeah, I guess normal for people who don't have diabetes. Mm hmm. Okay, so you said, you looked at you see you found the podcast because you were searching for the word Omni pod? in iTunes? Yeah, very progressive.

Unknown Speaker 40:33
Why should a lot so I was I'm always looking for podcasts.

Scott Benner 40:36
Okay. Okay. So So did you end up with an omni pod? Oh, yes.

Unknown Speaker 40:40
Yeah. Okay.

Scott Benner 40:42
And you're using glue. And

Unknown Speaker 40:43
you said you're using a glucose? Yep. Dec. g phi. Yep. Cool.

Scott Benner 40:47
Now, any trouble getting it with your insurance?

Sarah 40:50
Now with insurance, I had to kind of believe my way through it at the windows office. But it was not a problem for me to basically tell them. This is what's happening. You know, I'm not taking no for an answer. So she was on. Let's see here. She was diagnosed mid August. And I had her on a deck by the first week in October and then on the pod like by the third week in October,

Scott Benner 41:17
hmm. And what was the end those? What was the argument they gave?

Sarah 41:21
It was the arbitrary you know, we'd like you to be on MDI for six months to a year. So you really know how you know how to deal with it. And I just thought I'm dealing with this 24 seven, I really know how to deal with it. So you know, let's move on.

Scott Benner 41:36
What does that mean exactly in a year from I know you're met with your mental

Sarah 41:40
Exactly. When I'm so frustrated and burned out from networking.

Scott Benner 41:44
We'd like you to come into the office, not be able to make eye contact anymore. scratch your messages on the table instead of speaking and then just crying back when she gets to that we'd love to get you.

Unknown Speaker 41:54
Exactly, exactly. It's funny because the argument

Scott Benner 42:00
at one point was we you need to do it with MDI, you need to understand the shots. Because what if your pump stops working? Yeah. And what if your pump stops working at this point in America means the FedEx man will bring me another one at 8am tomorrow morning. Like you don't mean like there's a guy in a white truck shows up my house is like, here you go. Yeah, that's what that means is that, you know, I guess it could stop working on Friday. I might not get back on Monday. And so it is really sorry, it's the Potro story. Okay. Which I'm not 100% sure if I've ever told on the pie, wrote about it in my book, right. So here it is. I'm going to tell to you, okay. A little girl and her mom are making a pot roast. The mom pulls the roast out, she cuts the ends off. She puts it in the pan. The little girl says, Mom, why did you just cut the ends off the pot roast. And the mom stops and she thinks about it and says I don't know. My mom used to cut the ends off of our pot roast. You're gonna have to go ask grandma. So go girl, a little girl calls the grandmother up on the phone says hey, I'm making a pot roast, mom's cut the ends off the pot roast. She said that's what you did. Why did you cut the ends off your pot roast? Why are we doing that? What's the purpose when we're cooking the podcast? And the woman thinks and she goes I don't know. My mom used to do it. So I did it. So they track to the old folks home or 97 year old grandmas that and she says Grandma, when used to make pot roast. Why'd you cut the ends off at the old lady stops? She thinks Thanks. Thanks. Thanks, thanks. She goes, Oh, I had a really short pan. So at some point, you don't know why the heck you're what you're doing. Right? And you don't know Who told you? They might not even have known Why? And maybe it goes all the way back to No, no. And that's my point with the insulin pumps. Oh, you have to know MDI, what's the reason that happened first, like, like, forget the history of diabetes, stop and look at it right now. There are insulin pumps that are now talking to glucose monitors and are making autonomous decisions about your insulin almost, with very little input from you. People say well, you know, Medtronic, Scott, there's out now. I think they I think it's user defined. I don't think you can use it to find the blood sugar. I think the targets like 120 Yeah, there are more coming. companies say they're they Their goal was to make the the blood sugar user defined. You know, all this stuff's going on. I'm about to interview, I don't know, within a week or so. On the pod CEO, we're going to talk about the dash system, you know, that they have coming. There's other companies that have stuff coming. There's all this stuff's going on. And you're and they're busy in the office telling you listen, here's two sticks in Iraq, when you can make a fire with this. I'll give you a lighter.

Unknown Speaker 44:31
Yeah. You know, like,

Scott Benner 44:33
oh, how about if I just take the lighter Now, what's the point? You know, it's, if there was a real point, people would be able to quantify it instead of just Well, we'd like to see you be able to why no one finishes the sentence, we would like to see you be able to because and then the because it's just like, well, what if your pump breaks? Well, if my pump breaks, I'll get another one. Yeah, you know, like so. We're now at the point where we're cutting the ends off the pot and Exactly. We don't know what the heck, we're doing it for you.

Sarah 45:02
Yes. And I think that's, that's what bothered me was that every time it just seemed like, well, this is the party line, this is what we're going with and deal with it. And it didn't know why was never there. In the hospital when they talked about continuous, they did talk about cgms. But they said, you know, there's accuracy issues, and I think they're talking about Medtronic. Medtronic is really big. We're in Minnesota. And so I think they're talking about the enlite, to be honest, but my first question as a totally new out of nowhere, shell shocked. Mom was why don't these two things talk to each other? Right, you know, and I said, Well, yeah, yeah, they will someday, but you know, there's accuracy issues, and we just do we don't really recommend it. So I definitely,

Scott Benner 45:48
yeah, accuracy accurate, let's say, let's say that it was because I love watching this argument online. Every once in a while someone loves to put up their Dexcom screen. Look at this, my blood sugar's 110. And I did a finger stick and it says 90 this thing's white. I was like, wow, okay, first of all, that's really cool. Yeah. And secondly, you know, with the FDA requirements for blood glucose meters, your meter could be well, it could your meter might be not reading 110 correctly. Or maybe the dex comes off by 10 points, and the meters off by 10 points, and your blood sugar is actually 100? Or how about people used to have to boil their urine to figure out what their blood sugar is? Shut up? Because you don't I mean, this is amazing. This stuff is amazing. And listen, I want to be very clear, I want the accuracy to be better. I want the companies to continue to work until I every time I see a blood glucose test, I can tell whether it's from index calm, or this new Libra thing or meter that it should be perfect. I hope they work towards perfect. Yeah, one's making that argument. My argument is if my blood sugar is 100, or it's 80, or it's 90, or it's 110. And this thing's telling me it's 90, and it's going up or it's going down. Isn't that really valuable information to have over not knowing at all

Unknown Speaker 47:03
incredibly valuable?

Scott Benner 47:04
Yeah, right. Right. And and it brings me back to when I think I wrote a blog post about a long time ago, the day that I realized that I have to stop worrying as to whether or not this meter is right. It's a really strange statement to make. But at some point, this is the meter I had back then. And I have to base what I'm doing on something. Yeah. And if this thing's telling me her blood sugar's 50. And it's really 70. If it's really 150, and it says it's 130. I can't, if I stop and think about that I'm frozen, I can't do anything. You don't mean, so this is the world you live in, you got type one diabetes, that's not great. But it's not fixable. This is the best gear that's available. It's not always right. That's not great. But it is fixable, and they're moving towards better all the time. But for now, I don't get complete. I can't I can't fathom having the insurance or having the money having the the the opportunity, and then wanting to complain that it's off by 15 points. Exactly. Cuz, because it might not be. Yeah. Why did you randomly choose to trust one of the devices over the other?

Sarah 48:17
Yeah, exactly. Exactly. No way. None of this is I mean, none of this is possible without it. So I there's no way that we could do what we're doing without the decks is, it would be impossible.

Scott Benner 48:28
And the number you're getting back, you know, again, it's not the end all be all, but you're getting back in a one. See, that's giving you an indication that we're doing okay, you know, we're about to forget, okay, I'm doing about what I expected. I'm doing. I'm not seeing a ton of lows, and I'm not seeing a ton of variability. Am I a one sees around where I expect it to be? This is going well? Yeah. Yeah. Anyone who's looking for specifics there? You're probably wasting your time. Yeah. Yeah, you figured that out a person who by nature would want it to be specific?

Sarah 49:04
Yes. Oh, yeah. I mean, I wanted the formula written out for me do this, do this, do this, and here's your good result. And, but, you know, that's not the way diabetes goes. And you have to stay fluid and you have to it's, I finally get you know what you mean about it's the feel of it. It's not the science of it,

Scott Benner 49:23
sir, you are my greatest accomplishment.

Unknown Speaker 49:25
Like I said, I'm a groupie.

Sarah 49:29
I literally when I was having a tough time we started the pump in October, and her ratios are just not dialed in and everything was going crazy. And I took everything in my power not to like email you and say I will pay you whatever you want to fly here for one week. And help me figure this out. And you don't really have to fly anywhere. I've

Unknown Speaker 49:49
done it. I'm like, clean, please.

Sarah 49:51
Type I mean, I really since I actually listened to a lot of episodes before she got on the pump. And I mean, I got some concepts, but they meant a lot more afterwards. Got the pump and then I thought, oh, okay, okay, we can do this. Yeah,

Scott Benner 50:03
it's vocab vocabulary is the, the the Yeah, I'm reminded of my son is 17. And I think he just verbally committed to a college to play bass. Oh, wow. So he's very excited. Yeah. And but he's been playing since he was a little tiny kid. And the first year he made his All Star team. He was six. And I was the first time I sort of just dropped them off and got like, way away from the field and just let him be there by himself a little bit. And when it was over, he got in the car. And I remember asked him like, hey, how'd it go? And he's like, he was good. Like, you still nervous, you could tell and I was like, everything makes sense. And he's like, Yeah, he's like, yeah, everything's great. We're gonna be great. And he's talking about good. They're gonna be six, you know? And I said, anything you have questions about? He goes, Yeah, yeah. I said, Oh, the coach kept telling us to be aggressive. And I was like, right, and he goes, What's that mean? And I was like, Oh, okay. And then it took me a half an hour to explain the aggressive if you don't realize if somebody doesn't have context, words aren't easy. You know, so, so without the context, this kid didn't know. And he's bright enough kid. He doesn't know what he didn't know what aggressive meant, I had to actually paint a picture of an animal attacking another animal. Like, so what that first animals doing is aggressive. Mm hmm. And, and he was like, oh, and then I painted six different pictures into his head. And he was like, Okay, I got it. Okay, so, so you're not much of a different situation. People are talking about Pre-Bolus Singh and Temp Basal. So you're like, what,

Unknown Speaker 51:31
what are that mean? What are you talking about? Right? Enough context? Yeah. Right. Yep.

Sarah 51:37
No, instead, he was meant nothing to me. I thought, you know, but now, I mean, I don't she has one basal rate, I change it a lot.

Unknown Speaker 51:44
I change it maybe four or five times a day, because I'm reacting to what's happening.

Scott Benner 51:49
So you're, you're doing something that I think that's genius. So you're just setting a baseline base already. Yeah. And then you're making bazel adjustments throughout the day with temporary

Sarah 52:00
I am. Yep. I'm trying to be her artificial pancreas basically.

Unknown Speaker 52:03
Yeah. Is anyone

Scott Benner 52:05
listening? Khalid? Great, Sarah, you're hearing this?

Unknown Speaker 52:07
Are you thinking to yourself, I'm not trying hard enough. This woman's amazing, because that's what I'm now thinking. You I mean, but they said though, you say you don't think about diabetes? much I do. I mean, I'm still in that spot where I, you know, there's a

Sarah 52:19
there's a big chunk of time here. And thankfully, I mean, I'm lucky enough to work part time. And you know, so I've dedicated a lot of time to this, but

Scott Benner 52:28
absolutely, yeah. Oh, look. No, there's no doubt. I mean, it's, you know, I'm not saying, you know, I hope I hope everyone understands that. I don't mean like, I don't think about it all day long. Yeah, I'm not. I'm not I'm not burdened by Sure. No, I didn't before we sat down. 55 minutes ago, I did not look to see what Arden's blood sugar was. Okay. I actually looked while you were talking about you said, I look at the decks a lot still. And I was like, you know, what, out of solidarity for blood sugar. And Arden's blood sugar was 88. And that's when I talked to you about what her had been like because the head cold, it's amazing. It's keeping your blood sugar nice and steady. And so I when it was at eight, I thought, I have to Pre-Bolus and like a half hour from now for lunch. So I sent her a text that said Temp Basal decreased 50% for a half hour, and she never saw it. And I still don't care why shorter blood sugar went to 83 now, okay, and I'm gonna end so I have one more window here. I'm going to try one more time. And if she doesn't see this, then I'm not going to call her over this shirt. Because all this all this really means is their blood sugar is going to be about 75 when we Pre-Bolus. Okay, and what I'll do is I'll extend the Bolus out over over a half an hour, so she'll get the insulin 20 minutes before she eats. But I'll put very little of it up front. Okay, so maybe it's part if she 75 Oh, she just said okay, so maybe now I'll do something a little different. But let's say she's 75 in 25 minutes when I bought a surfer from we do the pre balls. And I wanted to have let me think about our lunch, you're ready to Oreo cookies. And applesauce cup, a yogurt, a half of a bagel. The bagel only has butter on it. Not anything else. I think there's also some veggie straws and hold on or something else. It's possible I don't remember what else was in that doesn't matter. To me, that sounds like about eight and a half years. Okay, maybe not maybe nine. So whatever I end up doing if she's a little low, I'll just say hey, do eight and a half units here. Extend do 10% now and the rest over a half an hour so that by the time 20 more minutes passes, she's really going to have over two thirds of the insulin in already. Some some of its going to be more active than other parts of it. And so as all that insolence kind of coming online as the food goes in, we should get a nice steady bounce I if if anything goes wrong, the Then of go wrong will be around 1155. She'll be 65 diagonal down at the next reading the decks takes a guarantee she jumps up to 73. Yeah, I would, I am so confident of that. I can't even begin to tell you how confident of that.

Unknown Speaker 55:17
Amazing.

Scott Benner 55:19
So so you will. But that's only because it's happened. So listen, I was also incredibly confident yesterday when my wife and I decided to clean out the garage together that at some point, I was going to do something to really piss her off. So that was 20 minutes of 20 years worth of data coming back to me that told me that I was going to piss her off augur Raj. And let me just tell you, Sarah, I did. I absolutely was able to do

Unknown Speaker 55:45
you were right. He called it.

Scott Benner 55:48
I mean, how could I not? So seriously, it's just and so when I say I don't think about it, I mean, I guess I am, I am thinking about what I'm going to give her. But if I wasn't talking to you, I would just have that thought in the time between her texting and saying, It's, she'll text me Pre-Bolus. And if I need time to think about it, I'll cheat by going high, because that buys me one extra time. Right. And if I don't need to think about it, I just start typing what to do. Yeah. Our interaction together will be three back and forth text. It'll take about 30 seconds.

Unknown Speaker 56:21
Oh, wow.

Sarah 56:23
That's amazing. I know. I we're not there yet. I, I managed it. I manage it at school with through the nurse. So I actually text back and forth with the nurse to do stuff. Because she's just Emma's just kind of a she's a real smart little girl. She's a little flighty though, you know, and but she doesn't want to go to the nurse. So I've been talking to her about what you guys do. And she's in second grade this year, and I'm kind of shooting for third, but I just I want to get there with the texting. that's reasonable. That's

Scott Benner 56:51
when I started third.

Unknown Speaker 56:52
Okay. So

Scott Benner 56:54
yeah. And and it was it was a necessity thing for us. Because we were I've talked about this long time ago, we got lucky. Arden second grade teacher loved her class and petitioned the school to move up with them all third grade a lot. And because that happened, she had trial and error, too. She didn't even realize. And she so she gets on in the third grade. And she says hey Arden's behind in math. And I was like, oh, okay, she's like, so you know, we're trying to decide what to do. And then she emails me a week later, and she says, I just realized that last year in second grade, I would hand out the math worksheet. Arden's alarm would go off, she'd get up, leave the class and go to the to the nurse's office, you'd give her insulin, or check her blood sugar was just a check, right? You would check her blood sugar, whatever, she'd come back, she was never gone long, 510 minutes. And then she'd sit down and do her math. And she said, But now what with hindsight, I realized Arden missed the math lesson every day. I always did it at the same time. And she was always gone at the same time. Oh, yeah. And she's like, so we can get this fixed off. I'll take care of it on this and I know what to do. And I said, Okay, in order to find a math now, Mm hmm. But but but had had she not moved up with her than the next teacher would have been like, Hey, your kid doesn't know math. Mm hmm. And it would have had nothing to do with their math skills. And, and we it never would have made me think this. Why am I sending my kid to the nurse? I have to I have to stop doing that. Yeah. What? Right? Because Because and I've said it here a million times before if your kid didn't have diabetes, and I said to you, hey, Sarah. 15 minutes broken out over the entire day. Did you hear that? I said, Hey, Sarah, and my phone

Unknown Speaker 58:41
theory. Oh,

Scott Benner 58:44
Siri, I don't need you. Siri, I don't need you. Know, that's it, buddy. Let's Let's give it up. Here we go. Who does that? So I never would have that was weird. Try not to say Hey, sorry. Yeah. But but so had that not happened, it wouldn't have put me into that mindset of, wow, it's five minutes here. It's 10 minutes here. Then I started thinking of all the times a day she was going for five minutes. And I thought we have to stop this. Because if I said to you, you know, hey, your daughter who doesn't have type one diabetes, we're going to pick 15 minutes a day, we're going to split it up into seven minute increments, and we're just going to pull her out of class. Mm hmm. And then we'll suffer back and you'd say no, no, you're not.

Unknown Speaker 59:24
Yeah, you know, but

Scott Benner 59:25
then you say, Well, she's got diabetes. So we have two and then she goes, Oh, okay. Well, she

Unknown Speaker 59:28
has Oh, yeah.

Sarah 59:29
Yeah, that's exactly what we see in school, too. It's like, Well, when I say you know, I wanted to do this or that in the class, and they don't, they don't fight me on it. But they can. The nurse always says, well, it doesn't take that long for her to come down here. And I'm thinking add it up, you know, added up over a few times a day. It's you know, and as the schoolwork gets harder, it's going to be more important that she stays in class. So I got her on her phone and we're actually getting her the new Apple watch with LTE. So I got that written into a 504. This year too, so I'm good to go.

Scott Benner 1:00:03
I can't get into her that she doesn't care.

Sarah 1:00:05
Ah, Shama wants to add, she wants all the tech and everything, but the challenge will be for her to not mess with it because you know that she wears her phone and one of those belts around her waist. Okay. But when it's on her wrist, we'll see if, if she can manage to not mess with it too much.

Scott Benner 1:00:22
Yeah, it's it. And that is ends up being person, the person like Arden doesn't care. So like when we had an apple watch at one point, my wife, my wife, one, one or something? And I said, well, Arden can use it. And we eventually sold it because Arden was just like I'm not wearing. We sent her to like a football game like, like her little friends wanted to go to the football game at the local high school. And the girl the young girls just all get no pack and giggle at the boys and run around the outside of the football. And so I said to my wife, I'm like a It's Friday night. I'm exhausted be it's called See, I don't want to go over there. And so I was like I said, so she wants to go. That's cool. So I remember saying to her at the time, we had the watch. I said here we'll put this watch on and that way and she's like, I'm not her friend was aware. So her friend wore the watch. And she watched her blood sugar while Arden Mestre.

Unknown Speaker 1:01:10
Ah, I

Unknown Speaker 1:01:11
love it. I love it.

Scott Benner 1:01:13
I don't know that aren't I get what you mean about flighty? I think if I could tell you I don't think it's bad. I think it's exactly what I intended. Yeah. But Arden doesn't really think of herself as a person with diabetes.

Unknown Speaker 1:01:23
Most of them.

Scott Benner 1:01:24
Yeah. So when you need her to like this morning, I said, Hey, I don't want to bum you out. I said, but just remember to stay hydrated. It's easy for a person with type one to end up in the hospital when they're sick. And she's like, Yeah, and I don't think they'll really listen to me. She goes, I'm listening to you. And I was like, okay, so to try to drink some more water and she goes, alright, and we're walking out into the garage, and I said, Are you gonna drink more water today? And she goes, probably not honest. And so, you know, okay, I get you. But but she's also like, incredibly diligent. Like she got up she was really beat yesterday. I heard her say 1000 times. I'm not well, just keep just keep making an announcement from under a blanket. And so this morning, I said to my wife, I'm like, Kelly, let's just let her stay home. But at eight o'clock, she woke up, I get a text and she's like, why'd you not wake me up for school wide. shut my alarms off. I was like, Oh, I thought you might want to sleep in and help you feel better. And she's like, I need to go to school. She's gonna want to fall behind. And and she's like, so so far, I've only missed art. But if I can get there by 820 I can get there for my first class. And she ran her. I mean, she went on, shoot. She, she looks like a homeless hooker, right? Our hair's going in 15 different directions. She's wearing sweatpants. T shirt. ran out of the house. Oh, because she she was like, I gotta I have to get there. Yeah. And yet, I don't think of her like that. She's not she's not a kid who's like, Oh, my grades, my grades. My Grades. She just, she's responsible. Yeah, you know. And so I was like, Okay. But at the same time, you know, when I tell you that I am slowly passing diabetes off the art and it is happening at a slow pace. It will, it'll I my expectation is one day, she'll just look at me and say, I don't need your help.

Sarah 1:03:05
Yeah. And that's fine. I don't need me, man. I mean, I'll be I manage it completely. For her. It is the last thing on her mind, which is actually kind of a beautiful thing for a seven year old. But she knows you know, if she goes to a friend's, we got to be texting. We do the texting thing at friend's house. But I'm very much of the mind that I'm going to do all of this for her until she doesn't want me to anymore. I don't want to. I mean, she's already learning things that, you know, by just absorption by osmosis, whatever. Yeah, I don't I have no intention of looking at her one day when she's 14 or whatever arbitrary age and saying, Well, now it's yours.

Scott Benner 1:03:47
A dumbbell rack?

Unknown Speaker 1:03:48
Yeah, your turn your turn. Now. By the way, I

Scott Benner 1:03:50
also want to say for people are listening who's who took a different tactic. I don't think you're wrong. You don't I mean, like, this is just how it occurred to me. I do know people were like, here, your nine year old enough figured this out. And the kids are, you know, they have a one season the eights or the nines, but they can see their kids learning it. It's getting better. And for them. That makes sense. That's how they want to do it. I don't want to do it that way. Also, my life, like you said earlier lends itself to this a little bit. It's not like it's not like I'm at work right now. Yep, I'm doing Listen, here's the day Sara, after we're done recording, by the way, I must really like you because I've never even mentioned that we're over time. Oh, so we can be phone. We can be phone, buddy. Awesome. I'm enjoying this conversation. So and please anyone else who I remind that we're coming up on an hour. That doesn't mean I've never said but but today, basically my day is this after this. I'm going to make a loaf of bread. I'm going to go to the bank and I'm going to go to the grocery store. I'm in a vacuum the floor, I'm going to do some laundry. My life's not I'm not at work, like there's somewhere I have to be at a certain time. It's easier for me to say things like we I take care of it and then we did it together and now it's going to hurt a little bit and the other day you No. And so that's lucky for me. But the other day we were in the car. And I said, you know, her Dexcom beep, which means she was going she went over 130. And I said, Hey, check your blood sugar. And she goes, why? And I was like, Did you not hear the beeping? And she goes, What? And I was like, okay, so just beep. So look at your blood sugar. So she looked, and I think it was just 135 diagonal up. And I decided right then and there, I want her to have point six units. And so I said, What do you think? And she goes, she shows it to me, it says point six. I'm like, that's what I was thinking. And I was so firm. And I was like, Oh, my god, she's really got this. And I said, How did you come up with that? She goes, I just pushed the button and then let go. Like, so you weren't thinking point six years? I was thinking a half. Oh, okay.

Unknown Speaker 1:05:42
Yes, enough.

Scott Benner 1:05:44
There you go. By the way, point 5.6 point seven. It wouldn't have mattered. Yeah, it's all it's all the same. Yeah.

Sarah 1:05:53
We have dabbled with a DIY closed loop so far. And we did that in the summer. And honestly, it just the, the main struggle I had with it was the tubing. We started on Omni pod. She's an active kid. And I put this old Medtronic pump on her and she looked at me like I had three heads. Like, why, why are you doing this to me? And I'm like, no, it's gonna be better. We know, bah, bah, bah. And, and I mean, and it was really a really cool system to watch work. And I'm really excited for, you know, what's coming, you know, with Omnipod and everything, but it's just,

Unknown Speaker 1:06:30
I can't overstate how important it is for her not to have been too big on her. There you go. That's what I'm saying. My omnipod.com forward slash juice box. I'm

Scott Benner 1:06:39
gonna start putting the ads right into the show. I'm just gonna, I mean, I'm not even gonna split that. Come in. I'm gonna let you talk. And then I'm gonna save the link. Okay, so it has been like an hour and 10 minutes. Okay. But you were fantastic. I think it goes without saying that I was fantastic. We don't have to go through it. Just, I'm just joking. I really appreciate you just being willing to come on and say, this really worked for me, you know, so that other people can hear you say that. And so for anyone who's listening who, you know, try, please, please try. Get like I think you could get to a spot where I think you can hear in Sara's voice that only a year and a diagnosis. 13 months. She is not. She is not one of those people who is scrambling around right now just out of her mind. She's She's quickly and thoughtfully growing towards something. And I think that's a really, really kind of amazing, so

Unknown Speaker 1:07:33
yes, I really do.

Sarah 1:07:35
Well, thank you. Thanks for having me. I was a little nervous. But I thought well, the most valuable conversations that you had, you know, for me is conversation. So the other parents, so if there's anything that I could talk about that would help someone else was more than willing to do it. So

Scott Benner 1:07:50
that you should also know too that I talked to plenty of people who don't aren't kids who aren't parents, like adults? These conversations are valuable for every you hear something in every one of them that, that that relates to you. Oh, I hadn't considered that. Or, yeah, that's how I feel too. And now there's a comfort in that, that you know, you're not by yourself or that you're maybe incorrect about your feelings about things because you hear other people having similar that ends up being all it is right isn't somebody else says Oh, that happens to me. And you're like, oh, okay, well, then that must be right. Yes. Because, you know, and meanwhile, there's the concept of right is sort of ridiculous, but it is helpful when someone else says it.

Sarah 1:08:30
Well. Yeah. I mean that to be able to hear you talk about it and say, Hey, give it a try. It'll be fine. Go ahead, as opposed to reading about it in a book. I mean, there's just, there's really no comparison. So I think the medium really kind of helps drive home the point that you hear people doing it and pay look, nothing, nothing bad happens. So go ahead and give it a shot.

Scott Benner 1:08:52
Yeah, I really do agree. I like I said, I've I think I've seen my blog be helpful over the last decade. But but not as well. There are points for my blog reached more people than this podcast reaches. And it wasn't I did not hear back from people the way I hear back from people with this. Yeah. So. So it really is my goal is to just hopefully, to, you know, get the podcast on the more years and hopefully more people like you have more experiences like yours because there are 20 people in a Facebook group yesterday, who all really could would have really been beneficial. It would have been beneficial for them to hear what you said today.

Unknown Speaker 1:09:30
Yeah,

Unknown Speaker 1:09:30
I hope they do.

Unknown Speaker 1:09:32
Spread the word everybody telephone. Absolutely. Cool.

Scott Benner 1:09:35
Thank you so much, sir. All right, hold on for a second so I can take a bite off.

Unknown Speaker 1:09:38
Sure. Well do.

Scott Benner 1:09:43
Was Sarah not terrific. Of course she was. I actually think this was a really fun. Listen, I hope you did too. Thank you very much. Dexcom and on the pod for sponsoring the Juicebox Podcast go to my on the pod.com Ford slash juice box or dexcom.com Ford slash you spikes are the links in your show notes or the links at Juicebox podcast.com. To find out more. I have nothing else to say. There'll be another episode next week. I felt like there was more to say but now I'm sitting here and I think I don't think there is. Well, okay then I guess we're done. Music and then silence. Have a good day.

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