#350 Diabetes Pro Tip: Bump and Nudge II

Diabetes Pro Tip: Bump and Nudge II

Scott and Jenny Smith, CDE share insights on type 1 diabetes care

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

Scott Benner 0:00
Hello, everybody. Welcome to the 18th installment of our diabetes pro tip series. This episode is diabetes pro tip, bump and nudge. This episode of The Juicebox Podcast is sponsored by Omni pod Dexcom and the Contour Next One blood glucose meter, you may be eligible for an absolutely free meter. Find out more at Contour Next one.com and the Dexcom g six continuous glucose monitor the same CGM that my daughter has been wearing for years. Find out about that@dexcom.com forward slash juice box. And of course, the tubeless insulin pump. The end all be all of insulin pumps. The Omni pod is available at my Omni pod.com Ford slash juice box. And when you get there, you can get a free no obligation demo of the Omni pod sent directly to you. Welcome to another edition of our diabetes pro tip episodes. Today, I and Jenny Smith. You know Jenny from integrated diabetes, Jennifer holds a bachelor's degree in human nutrition and biology from the University of Wisconsin. She's a registered and licensed dietitian, a certified diabetes educator and certified trainer and most makes and models of insulin pumps and continuous glucose monitoring systems. Jenny is absolutely the bestest. She is. If you don't believe me, go back to Episode 210. And start over with the diabetes pro tips. Honestly, if you're just finding this series, check out diabetes pro tip comm you'll be able to see them all or like I said, you can go back to Episode 210 right there in your podcast player to get started. these really are designed to be listened to in order. If you're new to this, starting at the 17th episode of the pro tip episodes is probably not the way to go. Please remember while you're listening that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please also always consult a physician before making any changes to your health care plan. or becoming bold with insulin. Alright, you ready to talk about bumping and nudging? Here we go. So let's start like this. I just put up like the 300 and 45th episode of the show, which is mind bending to me honestly, what was the first first year first up because you'd been blogging for a long time before I blogged from 2007 consistently until 2015 when the podcast started. And now I have to admit the blocks a little more of a way of me sharing, I don't sit down and write from my heart as much as I used to. Because, right, it's so much easier to do on the podcast, and you reach more people. But I blogged for that many years the blog was strong, it was a million million and a half clicks a year 111 block of maybe two or three years, I got to like 2 million clicks, which was really big. But then I saw it kind of like trending away. And so in 2015 I started the podcast. And I really thought it was going to be I guess this isn't maybe a neat place to say this. I thought I was going to go back and read my most popular blog posts, like into this microphone. Because that was my expectation for us. Like, you know, some of these blog posts are really helpful to people. I'll read them and make them audio. I did that for 20 minutes one time, stopped, deleted the file and was like, This is stupid. Yeah, yeah. Nobody cares about this.

Jennifer Smith, CDE 3:40
And well, I can't say there are some people that would care about that. I've actually got a couple of clients who really, they love the podcast because their their audio. And when they read things, it doesn't stick. And so they have to reread and reread. And finally some of the adults that I've got are like, I just put the book down, because they're like, I can't keep reading. I'm not retaining it. But if I hear it, it's there. It's in my brain. So

Scott Benner 4:08
no, I hear that I and I should just felt boring to me. Like I thought someone would like it. But I mean, if I'm being honest, I was trying to reach more people, not just, you know, people who would literally be willing to listen to somebody read something dry. You know what I mean? Right? I mean, at least put some music behind it. I can imagine how funny that would be if I was reading with music behind me and there was like this guy's talking about it would be terrible. Yeah. And then it picked up and picked up. And, and like, you know, but for people who may be coming in late to it. After a number of years of the podcast, I started thinking there's like a real system here. Like I knew that while I was blogging, but when I could hear it, I thought oh no, it's this piece in this piece and these these four or five ideas and when you bring them together, there are 5581 say like you just do these things and that's what happens you know, and I And I had had you on the show, maybe twice. Mm hmm. And I always wanted you to be back. I thought she's the best guest I've ever had. Like, I mean, honestly, you, when you when it comes to diabetes, you and I think exactly alike about it from two completely different perspectives, which is right, weird and interest. Nice, right? Yeah. And it's nice. And so I was somewhere one day, and I thought I know what I'm going to do. I'm going to take the tenants of the podcast and break them down with Jenny, if she wants to do this, I'm going to get a hold of her and see if she wants to do it. And that was a weird leap for me, because until then, my real belief was that if you just listen to all the episodes, you'd hear things come up very kind of organically, and they would stick to your brain better, because you heard them conversationally, and I was a little scared to do just specifically with more bulleted specific topics, but then I realized I could do it with you. Because we have a rapport. Like, I've talked to other people in the podcast, and I try to talk them about stuff. And I find I'm stopping and starting and like, I'm like, oh, they're talking over me. I'm talking over them. I can't find a vibe, you know, I knew I had that with you. So I contacted you. And you were like, I'll do it. And at the time, I was like, it'll be like six or seven, Jenny. And I sent you a little list and you were really great. Like you took the list and you were like, I'd put them in this order. I think they make more sense in this order. And I was like, Okay, great. And now I'm going to look, I'm actually going to diabetes, pro tip comm now because that little idea now has its own website, which is even strange. It's great. 1-234-567-8910 1112 1314 16 there are 17 pro tips. And this is going to be the 18th one, and then we're going to do pregnancy and we're gonna keep going right? And it's spawned like defining diabetes, which I never thought was a thing that was needed until this one person sent me a note that said, Hey, I wanted to thank you. Because until I listened to the podcast, I didn't realize I was on MDI. They took and you told me that right. And that made me think, wow, there's some people really not understand some of the terms we're using. Let's define the terms for them, but simply not an hour conversation. Right. Right. A little bit. Anyway,

Jennifer Smith, CDE 7:21
through that also not a not a dictionary definition. I think, as I said, you know, before some people get things because they hear it in a different way, or they read it in a different way. And I think the great thing about the podcast too, even with the pro tips, part of it is that it's broken down much more like layman's, applicable, it's, it's not what you get in a typical doctor education clinic. And we did

Scott Benner 7:45
it a couple of times. And I was like, Damn, this is good. It went so well that I was like, give me your address. Jennifer, I am sending you a microphone.

Unknown Speaker 7:54
sounds better.

Scott Benner 7:55
Let's go. But one of the things that we did was bump and nudge, it gets talked about in the episodes, but it doesn't have its own episode. And I always kind of thought that was okay. Until in the last year. I looked at algorithm based pumping, and saw how my bumping and nudging was too much. It had gotten out of hand and it didn't realize it because it was so easy for us to do that. We never looked back at the root cause of why we were bumping and nudging. And so this has been bothering me for like six months now. And I said the Jenny, I need a pro tip episode on this because not that bumping and nudging is a bad idea. It's a terrific idea. Right, but you need to understand it more. It's a bigger topic than I thought it was. Mm hmm.

Jennifer Smith, CDE 8:49
And I think you really I think you really like realized it when you guys started using to do it yourself. Right? As

Scott Benner 8:58
soon as day one came.

Jennifer Smith, CDE 9:01
We talked and I was like, how much are you using Temp Basal? Yes. How much? are you adding little micro corrections or adjustments or whatnot through the day? And you're like, Oh,

Scott Benner 9:10
I don't know. I never thought about it before. So So Jenny's The one who said it to me, because we were trying to find it was such an easy thing. Like you guys would hear me say before, like, I don't know, artists, insulin to carb ratio doesn't matter to me. I don't know what anything is. none of it matters, right? I know, we're basal rate. And I know food. I look at food and I see food. But

Jennifer Smith, CDE 9:31
you're like, Oh, that looks like five units. Oh, that looks like I got to split it up and give some now and a whole bunch later. Right.

Scott Benner 9:37
Right. And being flexible, which is terrific and important. What I didn't realize it was doing to me. You have to kind of like step back and look at a timeline of months, maybe the develop into years is that at some point, you know, meal x took two units at this bazel rate of whatever it was and Then it took two and a half, and three and three and a half and four. But it happens so slowly, I didn't notice. I didn't realize that I was now bolusing, six units for something I used the Bolus for units work. I mean, I did. But I never stopped and thought, I wonder how much of this meal insulin is attacking the food and how much of it is staying in our system for hours afterwards, and maybe acting as bazel. Right. And so I had bumped so much with insulin that I lost track of what Arden's baseline need was, it didn't matter because we were doing so well. But it didn't matter. And I learned that when I when I said, I don't this algorithm won't work. This is ridiculous. Her blood sugar's all over the place, right? It's just crazy. And it's because I had lost track of how much insulin we were actually using versus how much my settings said, we were using that did I say that clearly how

Jennifer Smith, CDE 10:57
much was actually needed, versus how much you were just intuitively correcting with right adding a little bit extra because you needed it, but not really realizing Hmm. In general, I'm always adding extra here. And it probably is a setting issue. It's an I shouldn't be adding this much more all the time,

Scott Benner 11:18
right. And it becomes such a way of life. Right? I didn't think of it anymore. So now, I want to leave that thought here. And we're going to come back to it later. Because I do think that being fluid around diabetes is incredibly important. And that you can't just keep resetting your basal rates every day for all the variables that are going to come up in your world. And I noticed a long time ago, that idea that concept is what causes people problems, right? The idea of like, well, I'll go to my doctor. And we'll find a basal rate. And oh, my doctor was great. They saw between 2am and 4am, we had some highs. So we moved our bazel, up at 1am or 12:30am. And it worked. But then they started getting low, you know, a couple weeks later, but I just fed the lows for two and a half months, then went back to the doctor, the doctor moved the bazel again, and that's how people that was considered a successful use of your physician and your insulin, right. And it probably still is in many people's minds. I saw that and thought this doesn't work. I don't want to be involved in this. And I've said it before. And I'll say it again, this podcast is a it's partly in place, because I don't like the math around diabetes. I don't like the waiting. I don't like the we'll wait and see. I don't all that stuff makes me uncomfortable. Like all the things that you're supposed to do. I just was always like, oh, that seems wrong. Like I don't I don't want to do that.

Jennifer Smith, CDE 12:53
within it. I think you also have to say that the technology that we have available today makes it more user friendly for people to learn how to make their own adjustments in the here and now. That might work then for a while and then they make more adjustments. But you know, years ago without technology, going to the doctor every three months, every six months, like I used to do when I was younger? That that was the wait to make adjustments now. Could we have taken and done more the more data analysis in between the doctor visits we could have in my mom actually did. She was like, This isn't working anymore? Let's just adjust here, let's Nope, you need some more insulin here. And I don't

I don't think she ever like,

you know, set it like that. But her explanation was always like, Well, this was just too high. And if it's going to be too high again tomorrow, then you're just gonna use more insulin for the next meal. Right? Right.

Unknown Speaker 13:51
Okay, my Whatever. I'm

Scott Benner 13:53
with you, you're cooking, right? So you seem to care. So I'm gonna go right here. But another issue in the space of people talking about diabetes in the past. It's kind of it's a number of folds, but one of them is that nobody ever wants to say too much, right? They're always like, worried that they'll say something, and it won't apply to the third person that hears it. And I so that was part of what the pro tips were for was to take information down to a point where you know what this really does apply to everyone. Like not saying things that only worked for you or me or noticing that my daughter needed something different after she started getting your period than she did before. And taking the time to talk through those differences were writing about it is hard because you write something down. It's static, you know, I write a blog post around about my nine year old daughter. somebody reads it, it now feels like a rule. I don't spend time with my nine year old child is going to be the applicable method that I use and you don't take time to philosophize out that I bet you this will be different when she's 15. And you just Writing doesn't work that way. But you can conversate that way. And so a lot of people in the past who were impacting the diabetes space, were parents of younger children, who until your child gets older, you don't realize you think this is diabetes, but this is diabetes. In a kid that's not, I don't know, like, coursing with hormones or growing as much as you think. Or as active as you believe they are. Like, you know, like, when you're eight, you're like, Oh, my kid plays baseball, like yeah, okay, wait, or your kid really plays baseball, like like, Right Whale, they weigh 200 pounds, and they're flying around, it's 110 degrees outside, and they're throwing things through walls like it, it's an impact on your body weight, or your kids playing ice hockey, as a high schooler, like, you know what I mean? Like, we've got

Jennifer Smith, CDE 15:51
breakfast from six until eight in the morning, they've got practice, again, from you know, four until eight, six o'clock at night. I mean, sometimes, those practices I'm amazed with the kids that I work with, their parents are like, Oh, she's got tennis for you know, from six o'clock until 730. And then she goes off to school, then she's got another practice from four to six and like, like, seriously, like, she's the tennis thrower.

Scott Benner 16:15
That's how you make a tennis pro. One in a million times. The other 990,000 times is how you make a kid who hates tennis eventually, right?

Unknown Speaker 16:25
Okay, exactly what

Scott Benner 16:27
these people were doing great stuff. And they were talking about these ideas. But they didn't realize how specific they were to the age group they were talking about. And, and I think that that's why this longer conversation why I mentioned how long the podcast has been up has been important, because in my heart as crazy as it sounds, I think if you want to have great success with your type one, diabetes, go back to episode one. And you'll listen through, because you'll take a journey through somebody who's talking about a kid with a nine or 10 year old body that, you know, you actually can hear in this podcast art and get older art and grow art and have problems her start to get her period, changing devices, meters, like all the way through me. And I know it sounds crazy, but in, you know, 347 hours as of today, I think when it's over, you'll go Okay, and then your kids just gonna have anyone seeing the fives it like if you want it to be or maybe you you'll make an adjustment. It'll be in the sixes, right? It'll also works for adults. And that was I was really cool. I hadn't had that, like greater expectation. I thought it would, but it didn't have a lot of a lot of adults weren't reading me as a blogger. You know, do you mean, there were some, but there weren't a lot. Anyway, at some point, I recognized that I was really long winded, I guess the people there, I guess there are used to that. Not at this point. But it's a very long way of saying that you can't just set your basal rates up, set up your insulin to carb ratios, and go with that's what the pump told me. And that's what the doctor told me to put in the pump, right? Because things are going to change, sometimes day to day, sometimes hour to hour activity to activity, there are going to be too many variables. And you can't stop every time like imagine if I had to get up tomorrow and go today is going to be a sedentary day. I will now go fix all of my basal rates for sedentary and change my insulin to carb ratio for sedentary By the way, do you realize that that could end up for some people meaning more for some people meaning less, it could end up meaning less for Basal and more for insulin to carb or vice depending who you are and what you eat. And so when all that exists, what ends up happening to people is they just go Ah, today was a good day, today was a bad day. Right? They leave the settings and then they have good days and bad days. And what I thought was, if we stay fluid enough, you can almost be ahead of what's happening and make these adjustments. Okay, right. All right. That's a long, long explanation. But to me, that's what led me to bumping and nudging. Now, for context, while Jenny and I are talking about it, I think of bumping as using insulin, bumping your blood sugar down. And I think of nudging as nudging your blood sugar up with carbs. Jenny thinks of it the exact opposite way. So don't get confused. If one of us does one thing and one of us does the other. But in the end, the idea is to keep yourself between these smaller parameters. Yeah, right, arrange a smaller range.

Jennifer Smith, CDE 19:39
And the range is defined by you,

Scott Benner 19:41
right? Doesn't matter to me what range you choose.

Jennifer Smith, CDE 19:44
Right? It's it's your chosen range, but the idea is to use food in an insulin and in a good advantage in both directions so that you can stay within that target,

Scott Benner 19:56
right. And so some of the things I learned as I

Jennifer Smith, CDE 19:59
was able to could see us by the way, your hands

Scott Benner 20:03
around good, bad. Oh my god, you keep saying that out loud. And someone's gonna ask you to turn this into a YouTube thing and then we're gonna be on camera and neither of us are going to be happy about that. Because you're gonna have to hang up that stuff behind you and I'm gonna have to get a haircut right. So

Jennifer Smith, CDE 20:19
which by the way is just like bags and you know, it's not random strangeness. It's like bags and like coats. That's it.

Scott Benner 20:26
Jenny is now apologizing for something you can't say that's very Midwest of you. By the way. You're like, Oh, it's it's not unclutter. It's nice people, it's a very important thing for the children hanging their bags.

Jennifer Smith, CDE 20:40
The easiest for them to get to.

Scott Benner 20:43
We're off topic now. So anyway, so I'm gonna do a little thing here. And please jump in whenever you want. In my mind, I take the I guess I should first say that I understand this would be more difficult without a continuous glucose monitor. I really do. What I'm saying would be harder, you could do it. I still think you could do it, you'd have to do it a little less aggressively, probably. And you'd be testing more but but what in my mind, what I see is that graph that goes along my daughter's Dexcom has a high line and a low line. And I take those lines from running. Oh, my God, which way is this? Is this parallel? to the ground? Yeah, it is. Right? I correct? Well, yes, I was asleep a lot in high school, nothing to this podcast, just so you know. So I take those two lines that are spaced apart evenly, that run parallel to the ground, and I flip them up on their end. So they're a little vertical, they're running vertical in my mind. And now they are a video game. To me. They're like driving, right? There are it's a football field, I don't want to run out of bounds on the left, or on the right. That's all it is. To me. There's in play and out of play. So when I describe it, and like talks, I discussed it like driving is interesting because it's um, you make a lot of imperceivable moves when you're driving that if you jerk the wheel around, you swerve and you don't want to do that. So as you notice yourself approaching a, you know, the shoulder, you just turn the wheel back a tiny little bit and you come back into toe again, right, like you're, you're it comes back. Same thing with you know, if you're going to cross into the other lane, you just come back a little bit, you don't jerk the wheel around, because if you drive the wheel around, you end up in the in the ditch or in the other lane, or you end up with much higher or lower blood sugar's than you mean. Right? So I bumped myself back, I bump, you know, a nudge back. I used that insulin to help Arden stay in range. The problem that comes with jerking the wheel is that once you're in the ditch, you have to overcorrect again. And then you're on the roller coaster. Right now I've said rollercoaster which now takes the graph back to being you know, the way it belongs in your mind for a second not vertically, but you're up and you're down and you're just overcorrecting the whole way with food with insulin, and you get the timing of the insulin so far off that some people eat done doesn't stop. It goes, it goes into and you just keep going that way. Yeah. For for not just for a day, for weeks and months and lifetimes of just that's what my blood sugar does. It bounces up and down. And people say that it's heartbreaking me like No, just turn the wheel a little less like right, like, right, it's okay. I understand how it happens. And I think there are ways out of it. So I want to talk about some functional ways out of it. I guess people should understand the difference between a falling and a drifting blood sugar. So why don't you talk about that for a second?

Jennifer Smith, CDE 23:57
Yeah, drifting is slow. And dropping is fast. I think that's the easiest way, drifting down and or even drifting up, happens gradually over time. So again, if you're using a continuous monitor of any kind, you'll see this slow, continual change in blood sugar, little little nudges, kind of happening over the course of time. And since on all CGM, each of those little dots on your graph represents about five minutes, each little drift up or down. Could be a change in glucose over a five minute time period, right? Yeah. So drifting being slower means you have more time to implement a change right now. That could also be a smaller change, than having to make drastic adjustments with food or insulin, right. When you're doing Dropping or rapidly rising kind of the opposite. That requires more whether it's more insulin or more food, it requires more because the change is happening very quickly now. And usually I see drifts happening either with a horizontal arrow on your CGM. Or you might get that slight angled arrow either down or up. That's I consider those drips, yeah, I consider drops or rapid rises, when you've got arrows pointing straight up or straight down. That's fast. So you need to do something now.

Scott Benner 25:40
And so to start with lows, if you're 75, straight down on Dexcom, that could mean two or three points per minute. Is that right? So every five minute change, you could go, you could end up moving 50 up to 15 points or something like that. I don't hold me to that. But fast is the point. Correct? So yeah, you don't like you know, when you're, when you're 80, straight down, you don't say, Hey, you know what, I'm just gonna, I'm gonna do a Temp Basal off for a half an hour here, that's not going to work. And there's reasons prior in the diabetes pro tip episodes, seriously, listen to them in order that will make sense to as why. But if you're just drifting down one of those situations where it's noon, and you're 100, and then it's 1215, and you're 95, and you just got this little drift happening, you could possibly be at the end of a bolus that ended up being a little too strong, right. And maybe there's, you know, an imperceivable amount of insulin left in there, quarter of a unit, a half unit, depending on your size, maybe it's two units if you're an adult, right. And if you take away your basal insulin right there, it's possible that you can trade that extra bolus that's left and create. What I sometimes talk about is like a black hole of Basal, right? So keeping in mind that everything you do with your insulin now is for later because insulin doesn't work immediately. Like, what if at noon, when you started to see that drift down, you took some bazel away, and that created a level. So now at the end of that, too strong Bolus was acting as your bazel. And your bazel wasn't there. But keeping in mind, if you shut your bezel off at noon, it's not going to probably start impacting you for at least one o'clock. Yeah, right for a while. But at the same time, you were only drifting Anyway, it was probably going to take you an hour to get from 100 to 60, where you'd then be drinking a juice. But instead, as you're hitting that 70 Mark, you're all the sudden into the timeframe where there's no basal insulin, and you just level out, that doesn't always work. I've done it and thought I'm a genius. And I've done it and thought, Oh, I missed that like, but trial and error will teach you because there are a lot of different.

Jennifer Smith, CDE 28:01
And I think some some visual into that, too. As you said, You know, sometimes it works. And sometimes it didn't quite hit the mark. But you weren't necessarily wrong to take these away. I think especially again, with the technology that we have today, not only can you see the drift, but if you are somebody who's using an insulin pump, you also have the visibility of insulin on board, right. So if you have an idea how much insulin is left, like you said, an earlier bolus, maybe you were a little heavy handed in it, or it was just you know too much, because you haven't quite figured out your ratios, or maybe it was, you know, a guesstimate completely, or whatever it was, you still have some insulin on board, if you have an idea of where your bazel is right now. And you know how much insulin is on board, taking bazel away could substitute for some of the iob that's left? Absolutely. And like you said it could nicely smooth things out and you just drift into a stable blood sugar. That might work if you've got iob of one and your basal rate at that point is like point eight or point nine or even one that could absolutely smooth out if you've got three units of iob and your Basil's at point five, not gonna hold you to half you in a way it's going to help a little but you're still going to ask him

Scott Benner 29:17
to get the result. Right. All right. So in my mind's eye Alright, we're gonna do it quick. The Contour Next One blood glucose meter is the finest blood glucose meter I've ever used with my daughter. It is small, but it fits in your hand nicely. It's easy to read during the night or during the day has a bright light for when you're checking blood sugars at night. And the blood test strips allow you to go back in to get a little more blood if you miss the first time. All these things together, coupled with the fantastic accuracy of this meter, make it my choice. That's the best blood glucose meter out there. Go to Contour Next one.com Now to find out if you're eligible for a free meter. And if not, meters aren't that expensive. Just ask your doctor say something like, hey, I've been using this old janky meter forever, I want to get it Contour. Next One. And I bet you that it'll be about as much effort as you have to put into it. All right, what's next Dexcom g six continuous glucose monitor is what's next, see the direction and speed of your blood sugar at a glance right there on your iPhone or Android share a loved one's blood sugars, those same numbers, directions and speeds with up to 10 people. That means that if your child has type one diabetes, or you do, you can share your blood sugars, and the alarms and everything that goes with it, it's up to 10 loved ones, through the magic of the internet. dexcom.com forward slash juice box to find out more. This is an indispensable tool, you hear me talk about it all the time. If you don't have a dexcom Today is the day to find out if you can, if you should, if you will. And you can and you should. And you will dexcom.com forward slash juice box. My omnipod.com forward slash juice box will offer you a free, no obligation demo of the Omni pod right there, come right to your house. That's an insulin pump demonstration that you can wear. Try on, see what you think, in the comfort of your own home. After that, you decide I want this on the pop thing, contact them back and you're like, yo, yo, let's do it. And you move forward where you don't want it. They don't bother you. It's no big deal, right? They're not gonna, they're not gonna, you know, I'm saying they're not gonna shake you down. They're like, come on, we sent you a demo, they're not like that, but just want you to have the demo. If you like it, you like it. If you don't, you don't, but you be the judge. And you can be that judge by going to my omnipod.com Ford slash juicebox. There are also links in the show notes of your podcast player, and that Juicebox podcast.com. Please support the sponsors. And now back to bumping and nudging.

In my mind's eye, years ago, I used to think of scales. So think of like the scales of justice, where each side has this big dish and you could, you know, pile weight, you know, and so think of insulin on one side, and carbs on the other or weight, the weight of your blood sugar on the other. And you can kind of imagine yourself throwing in a little on one dish and going Oh, that was too heavy and taking a little out. And you know, we're taking some out, like that's how I think of insulin, like put a little intake a little out. You know, and then, you know, I say a lot on the podcast, and that I think we talked too much just about how insulin impacts the number. And there's so many other things to think about how food impacts insulin, right, like, like, you'll hear me tell a story about like, creating a drop, and then catching it with food. And right to me, that's how the food impacts the insulin. And it's just, there's, it's a weird thing. But there's a lot of different ways to think about what's going on that little game that's going on in your body between, you know, the sugar that's in your blood, or that's going to be in your blood or the foods that's going to put the sugar there and the insulin that's trying to take it out again. So anyway, you can bump with a Temp Basal, right? It just is like to take it away like Jenny and I have explained. Also the same goes for going up. If you see, you know, a 90 that turns into a 95 it turns into 100 it's going to be one of those slow drifts up. There's nothing worse than that, in my opinion, I always think of it as the, um, the mountain climber on the prices right? That because every time you're like it's gonna stop, there's no way that guys falling off the end, they're gonna figure this out like and it just totally who and it just goes on forever, right? And then that little guy just pops off the end. And then Drew Carey takes your money back from you and you're screwed. You walk away. Right? So like, you see this 90 blood sugar that's drifting up. Two hours later, it's 250. And you think I did something? Yeah, like I should have done something, you know, maybe that's a Temp Basal increase, maybe it's a Bolus. But all All I know is that a 120 or one, you know, whatever you wherever you decide to be diagonal up, can be brought back to a stable 90 with far less insulin than it will take to address the 252 hours later. Correct. And when you're only using small bumps of insulin, you're very less likely to cause a low and so when you see that 120 To me, that's you approaching, you know the the line on the side of the road. And you just want to come back almost an imperceivable amount with the wheel or the tiniest bit of insulin to bring it back in line now, right? I have done this with my daughter for years with an amazing amount of success. And I've seen people, scores of people who listen to this podcast do it too. And it works. It really does. But the idea is that you're not always going to get your Bolus, right. You're not always going to have the right amount of Basal going for your specific situation that's happening right then in there. Correct? Wow, I'm more I think you're with me. Don't tell your husband.

Jennifer Smith, CDE 35:45
I think you know, and two of you want, if you wanted to add some definition to like people always ask, Well, how much? How much when I start to see this drift? How much should I add? Well, you know, one, again, everybody's physiology is a bit different your sensitivity to insulin. So a point one might be what works for you a point seven might be what needs to be in, you know, somebody else's case. But I think if you give definition to direction of blood sugar, again, using today's technology, beneficially. And you mentioned before, kind of the directional arrows, and what that indicates, as far as a drift up or a drift down, and how much is happening. If you're wondering how much to add with insulin, when you do start to see a drift up, the angled arrow is really kind of a rate of change of about one to two points per minute. Right? So if you're aiming to see, okay, I'm at 90, I've not done anything. And now my blood sugar, it looks like it's starting to come up. I don't know why, but it's happening. If you excuse me, you know, experience that a 90 with a angled arrow up one to two points per minute in the next 30 minutes. If you do nothing, your blood sugar could be 30 to 60 points higher. Right? Right. So if you use that to your advantage, and you say, Okay, I could be on the low end 30 points higher, it could be one at 120, I kind of know what I would use to offset, you know, a 50 point rise in my blood sugar, maybe I need to just add a little bit like point two, or maybe I need to take a point five extra, you know, that's kind of a way that's a little bit more, if you're the math person right, may help you to get a little bit more precise and not worry about then ending up on the downdraft later.

Scott Benner 37:39
And if you are me, what you do is you try something and then the next time you try something different if that didn't work, right, less or more, yes, just more or less whatever try. And it's important to remember that it's not, you're not going to get it right the first time. And even if you do get it right the first time, the variables may change the second time it becomes an art, like it really does like just knowing how much to push just a little bit like you know, you squeeze too tight and it's too much you're not laughing you're let go. And and using Jenny's example right there and flipping it to getting lower. You don't always need the whole juice box, you don't always need every piece of candy in the package that sometimes you can nudge with food, right. And I know that 15 carbs 15 minutes is the rule of thumb. But if you're using a CGM, you can see it better. You don't have to 15 carbs 15 minutes is when people are blind to what their blood sugar is. And they're trying to stop themselves from having a seizure. That's important. I'm not saying no. Okay, and I'm not telling you not to do it. But I'm telling you that if you do it, and find yourself to be 300 later, you didn't need all 15 carbs, right. And, by the way, if you do get into a panicky situation, and you've got to just horkan carbs, I'm not going to tell you to not do it. What I am going to tell you is that when you when the dust settles, you need to figure out how much insulin you've got a bolus for that food you just took, right right like maybe not for all of it, but some of its going to need insulin you have to stop the bouncing you've got to make sure you can't get on that roller coaster like don't get on it. it's maddening. And the only way off of that roller coaster By the way, in my opinion is you stop taking in carbs and you get back to level again, like like I can listen I can knock Arden off that roller coaster while she's still eating but that is a ninja level event. Like like you need to be really good at that to stop to stop a roller coaster in between food

Jennifer Smith, CDE 39:46
and you'll get it takes understanding sensitivity. Are you very well known and I'm sure Arden does as well. You guys know her sensitivity and you've paid enough attention to say okay, we need this much right now. Because of all of these other variables in the picture, or you need this much less right now or whatnot, and you do get to that level when you start to pay enough attention, you know, to your personal sensitivity and the precision that you need. Um, I think you know, the 15 and 15 is age old. I mean, that's what I started with 32 years ago, it's 15 and 15. And we didn't have the visibility of blood sugar changes at that point, we didn't or even

Scott Benner 40:26
meter by the way that only takes a tiny drop of blood, right isn't and this beautiful Lance that, you know, it doesn't hurt that badly while you're doing it, you were right stabbing yourself with a sword dumping or dumping your rocks in a way we kind of

Jennifer Smith, CDE 40:42
called it the guillotine It was like this big old drone that like hammered down on your finger. And like I would like I would like inch my finger like slightly away from like the little underneath platform from where it like jabbed my finger, I would like just hold it back. So it didn't quite jab it. That was my like, adjustment to the land set depth, right, that was the only adjustment I had at that point. But your point being really that you have some tools now that allow you a lot more precision in how you bump in know you do. And with smart tools. Today, too, I think this is a good place to mention it is with our, with our smart hybrid closed loop systems that are on the market today. That adjustment with carb, the 15 and 15 is 100% too much 100% too much with most of these systems on the market today. When you're adding a little bit of carbohydrate, we're talking like a little bit of carb, because the system has already been helping you coming into this drop in blood sugar. So 15 grams, hundred percent is going to be way too much. You might need two or three Skittles, which is like two or three grams of carbs, you might need half of a glucose tablet, you might need a quarter of a juice juice box. So

Scott Benner 42:06
what you know, I want to go a little deeper into this, like faster rises and falls. You see people online every once in a while it's very common, actually. They're injecting and they all put in the measurement for their slow acting insulin as fast acting by mistake like oh, I take like you'll see an adult like I take 20 units of Lantus every day. And I just gave myself 20 units of novolog. And they're online. What do I do? What do I do what I do? And I'm just like, figure out how many carbs that takes and eat them. Like, that makes sense to me. Right and and give that a try. So say you do that. Not that but say you have a meal that really needed five units. And for some reason you thought seven. And the next thing you know, 40 minutes later, there's an arrow down on your CGM, you're falling fast, you need to eat the carbs to stop that. So it's a much bigger nudge, right? It's more like a nudge with a sledgehammer now, and you need to eat the carbs to stop that. In the same thought process. If you miss greatly with that insulin, it should have been seven and you use five and 30 minutes later, your two arrows straight up. I don't mess around there. Like I am stopping those arrows, right? And you think, Well, okay, see, I don't know, say was literally like a mistake you meant to do seven and you did five she's like, okay, two units, that two units isn't going to do it anymore. Because you have all this momentum, right? Like there's this momentum, you have to stop the momentum, you've got a higher number than you thought about when you decided on the insulin the first time, there's a lot to think about. There's the number, the momentum and getting you back without making you Well, there are times that I'll take what I think the amount is that's going to stop the arrows plus the amount that's going to change the number back to where I want it to be. And I realize if I give her this insulin right now, she's going to end up low later. Mm hmm. But I still give it to her. And then there's a moment where I take the bazel away away, right? To try to do what I mentioned earlier, eat up that extra. So I needed all that force from that insulin up front because of the situation we're in. But I don't need the tail of it later. But the tails going to be there. So what if I took her bazel away so that it wasn't bazel plus the tail, right? And so I get the benefit of the up front without the kick in the pants. Again, what comes later, right, right. That's another way to think of bumping and nudging in my opinion. So there's any teacher

Jennifer Smith, CDE 44:51
learning that tools it takes learning the tools to use, you know, things like people who are using MDI or multiple things injections, it becomes harder because you can't take these away. Yes, it's injected, it's there. So if you are heavy handed with a correction, because you really want that double arrow to stop, you're going to be have to be, you have to be ready on the back end with carbs. To stop right

Scott Benner 45:17
off, you want to do you want to know what a pump does that multiple MDI doesn't do, it stops you from having to take a bunch of injections, it allows you to do temporary basal increases, decreases, extended boluses. That's it. And you know, you don't have to carry pens with you and right, wonder if your insulin is getting warm while you're at the water park. Like Like that's, that's, that's it? I mean, I think, to me, it sounds like a very little bit. But it's a lot. If you're going to be reactive like this and stay flexible and things like that. I'm not saying you can't do it with injections, I know plenty of people who do you have a very commonly are adults, or, you know, kids who just don't care about the injections, because there's going to be a moment when you're going to put in a little insulin and realize it's not enough and have to put in a little more. And now that's two needles, you know, instead of two pushes of a button, I think there are

Jennifer Smith, CDE 46:13
certain kinds of food which we've talked about, in other episodes, reading a pump to cover differently over a longer period of time. With a with an injection, you can't do that, unless you're willing to just take more injections with more insulin.

Scott Benner 46:26
So now here's the next thing about bumping and nudging, you get what you expect a little bit. And I want to just before I tell you about that, I want to tell you that what Jenny just said, shouldn't have been glossed over. There's other parts to this, I'm talking about bumping and nudging within a fairly perfect system, meaning I have my daughter's bazel well in hand, I'm not that far off with her meal boluses. If I missed like, we're not just like running around with our hair on fire gun, like, yeah, you know, like, and I just

Jennifer Smith, CDE 46:54
hear feed here, give more here.

Scott Benner 46:58
be insane. And I do mean this without sounding like I'm trying to pimp the the content, if you go back and start at the beginning of the pro tips. Or if you want to power Listen, by the way, those of you who start at the beginning of the podcast and listen right through, you have my respect, I thank you very much. Because why the downloads are so good, and it really helps me. So thank you very much. But at least go back to the pro tips and listen through, because then you'll get to a point where bumping and nudging really is a good tool.

Jennifer Smith, CDE 47:30
But it doesn't happen not hundred percent of the time. It's not always gonna work.

Scott Benner 47:35
Right, right. Like there are gonna be times where it doesn't work. And it happened to me last night with Chinese food. So we came out of a pump change and went right into Chinese food, which just shows my arrogance, really, because I was like, this won't be a problem. But what I didn't take into account is this for the past 72 hours, Arden has just needed more insulin, like there are foods that don't make Arden spike that are making your spike for the last three days. I don't know why it's not important, why it's just happening, you know, like, like, soup, just having like a clam chowder out of a cannon. I can't get it under like 250, like 45 minutes later, like, I'm like what's happening, you know, and it'll go away. Because the day before this started, her blood sugar was like 85 for 17 hours in a row. So, you know, it'll, it'll cycle through, we'll figure it out. Maybe it'll end up being a variable that needs adjusting. I don't think it will be but I'll see. But that's not the point. The point is, we came from a pod change, right into Chinese food. And boy, look at that. I did not do well with that. And so I want to first tell you that when I say oh my god, I did not do well with that. What I mean is her blood sugar was between like 175 and 210 for a number of hours afterwards. I know you're thinking Shut up. I would love that. Right? Yeah, yeah, people are like, Really? That's your complaints? Not a complaint. It's just I missed, right. Right. And there was the time five hours honestly, where she needed I bolused a bunch of times and I never once got it right I was never strong enough with it. And I have to admit, it was because I was tired and I didn't want to be up all night. So I just I erred a little on the side of caution not a lot and and I kept pushing. So but I did not cause her to get low afterwards, which was which is a win. It felt like that to me and I'll tell you why. And I want to put this in this episode too. So very recently, I wore the Dexcom Pro continuous glucose monitor and I was very happy to find out that I am apparently not pre diabetic as I was texting Jenny's I was putting I'm like you know this I'm gonna find out I have type two diabetes, right like I'm I was very happy that I didn't. Obviously, I was grateful, but I got to see What a pancreas does when it's doing what it's supposed to do. And I have to tell you that there is nothing I ate no matter how low glycemic or high glycemic, they got my blood sugar over. Yeah, I mean, I told Jenna I had eat two pieces of cake to get my blood sugar to like 135 141 time, right? But as I look back over the day, my standard deviation was like 11. You know, my, my average blood sugar was I don't like 90 or 80 or something 85 or 90, right. But I still went up a little gracefully 120 most of the time back down again. You know, that happened when I ate. And I had already changed my mind about my expectations for Arden. It over the last couple of years, you guys have heard me loosen up on the idea of like stopping every spike like I don't, I'm not a flatline person. I don't feel like my daughter's blood sugar needs to be a flatline, I do believe that she has type one diabetes, and that letting a flatline get away from you turns into a disaster that takes way too long to fix, which is why all this is important. But I don't care if she eats in her blood sugar goes up to 121 30 and comes back down again. I think that's fine. As long as she's not low on the other side, I start getting a little hinky over 140 in my heart, I'm a little much, you know. And it's not to say I wouldn't try to stop at 120 if I thought I had the answer to it. But I don't know it just it seems important for me to tell you that if your pancreas is working your blood sugar is not always at five, it you know, it just isn't. So be a little easy on yourself, have good expectations, but understand that my daughter, you your kid, Jenny, you don't have the mechanism to adjust, it isn't just going to put the brakes on for you. So that's why you can't you know, I say you'll ever get high if you don't get high. That's sort of what I mean by that, like stop the arrows stop before it starts, right?

Jennifer Smith, CDE 52:03
Well into this kind of experience that you had to I think one of the funny texts from you was relative to Pre-Bolus.

Scott Benner 52:13
Yeah, I was

Jennifer Smith, CDE 52:14
tested in your life. I Pre-Bolus better than my own prank. Pre-Bolus is I think is what your text was because you had seen a difference in what you had done for the same meal for Arden with her Pre-Bolus Yes, versus what your own pancreas was doing. And I think you said something like, I wish I could get my pancreas to Pre-Bolus. And I was like, well, your pancreas kind of does actually do that the working pancreas body kind of does do this like pre Bolus. Bolus, right?

Scott Benner 52:47
So Jenny's tried to explain to me I got if this is true, she said that sometimes when you smell food or you get hungry, your body anticipates that your blood sugar is going to go up and gets a little working on things prior. Right? That's really cool. But what she's pointing out and I am a little embarrassed is that after a couple of days, I would look at, like I'd be cooking and I would think to myself, like I think rubbing my stomach wherever I thought my pancreas was, you know, I don't even know. And so I was just like, man, now do it. Now, brother. We're about to have pasta. Go, you know. But no, Jenny's not wrong. And I'm not bragging. I was better at stopping spikes with Arden than my body was for me. And I was really, like, comforted by that. You know, I was like, wow, this, this post on that podcast really works. And I was I was just really, I was really thrilled. You know, it's like, wow, I because it felt like it wasn't overkill. Do you know what I mean by that, like, I thought, Oh, I'm not taking this too seriously. I'm taking this the right amount of serious, right. And it just really was it was a it was a great experience. I want to thank Dexcom for letting me wear the Pro. And it was really nice. I was the only that that was only worn by national media outlet people. And me, and I was very grateful. And I really appreciate that Dexcom appreciates the podcast and sees it as what it is. Yeah, not, not not I'm just not a guy with a podcast. Like I was like, wow, they really like made me feel good. Anyway, point is the last point, I guess if all this is, is that bumping and nudging is terrific. It's great while you're learning things, while you're learning about how to Bolus for meals while you're learning about activities. You know, all that stuff's great, but it's not a long term, everyday solution. And I didn't recognize that people wouldn't translate out of it eventually, like just go like, oh, okay, um, didn't happen to me. You know, I said at the beginning I didn't realize it wasn't happening to me. And then finally, and again, I have to thank the people listening, because we started the private Facebook group, which I'm not particularly active in. But see, every day, I started watching and this is when I said to Jenny, I need a pro tip on pumping. And I was like, Oh my god, these people are doing this all the time, like, constantly. I'm like, it's not for constantly. And so here we are. So if you heard us do defining diabetes, bumping nudge, which literally just came out last week, I said in there, what I didn't realize about bumping and dodging when I started doing it was that it's as much of a diagnostic tool as it is, you know, a tool for keeping your blood sugar's in order. Correct. So Jenny, when you start seeing yourself pumping and nudging too much, what should you be doing?

Jennifer Smith, CDE 55:53
Then you should be going back.

Personally, what I do, and with the people that I work with, what I do in their in data analysis is, I look at a cumulative and I say, over the course of this time, whether it's a week, or three days, or two months, or whatever we want to look at together, we can say, well, goodness, we've had a lot more use of Temp Basal that are not specific to like activity reason, or a food based reason, like you always eat Friday night pizza, or whatever it is, and you need that kind of a tool for but goodness we're having, there's a lot of corrections happening after meals all the time, or there's a lot of you know, you're using Temp Basal to cut off insulin all the time, if that's happening. And while it might be proving to give you the results that you want, there's a bigger picture, they're saying there's either not enough insulin for some reason now. So we need more in the bazel. Or we need to add a change to your ratios so that you do get more robust type of Bolus for food. And then you shouldn't have to follow it so heavily after and adjust with extra insulin all the time. So that becomes looking at information and saying, for whatever reason, I just need more bazel. Now let's pop it into place for whatever reason, my ratios look like they're not covering well, or they're covering too much. Let's take some away, let's add some in. And let's make sure that I'm not bumping and nudging now 100% of the day, because that shouldn't be the case. Right? Right. You shouldn't have to work that hard, essentially. Yeah,

Scott Benner 57:29
one of the I think one of the benefits of the podcast is that it eventually should make the management of diabetes simpler and less impactful on your, your moment to moment, you shouldn't constantly be like, Okay, a little more, a little less, a little more like, that's no algorithms do that. But you shouldn't have to do that. Right? If you find yourself doing it, look back and and just try to separate a variable from a constant and address the constants and keep bumping the variables. That's, that's all it gets that easy. I took me a while to figure it out. And that's why I'm here saying it to you because I thought, oh, gosh, what if people don't figure it out? Like I started having this heart in my head that people would just be like, bumping

Jennifer Smith, CDE 58:18
following my child until they're 50. And I'll be 89. You know, what's happening to their bush

Scott Benner 58:24
picture, people in my head that haven't seen the sun in three years have their hair all wired, like they've been electrocuted, and they're like, my kids, my kids, is 5.5, their blood sugar hasn't gone over 110 in six years, I'm fine. Like, please don't be like, Oh, my God, that would break my heart. If that's what's happening to you. And don't get me wrong. By the way, in the beginning, while you're starting to figure it out, you may be alone.

Unknown Speaker 58:49
That is one field, you should

Scott Benner 58:50
be able to get past that. Right. And I hope this has been helpful. Did we miss anything, Jenny? Because you guys, don't you really everyone listening should should just take a second to realize that Jenny, and I don't have any notes in front of us. Like we're not working off a list. And I still think we got in the timeframe through everything I wanted to say. Do you feel like Yes,

Jennifer Smith, CDE 59:10
absolutely. You did a good job. I should

Scott Benner 59:13
ring a bell. I'm gonna spike. That's right. I want to say this is something I was going to say later when I was editing it together. But I want to say it was Jenny here instead. I appreciate that the people listening care about this. Like, I really do. Like, I think it's wonderful that you all want better or easier or simpler, and aren't just throwing up your hands and saying, I don't know. There's good days and there's bad days. I think it's really wonderful. I think that we're creating a feeling throughout the diabetes world that's going to help people in the future it might not help you as much as it's going to help someone else. But I got you know, it's funny, it's not a note, but some He posted this on social media the other day, and I'm not gonna put their comments and their name into it. But I want to tell you like how amazing I thought this was. This person is relaying that their child, a 13 year old who's only been diagnosed for four weeks, listens to the podcast with their parents went into the doctor four weeks later advocated for themselves for a pump, explained Wow, explained that she wanted to use extended boluses. She tried it with MDI showed her doctor how she tried it, explained that she wants to do Temp Basal adjustments in the anticipation of exercise and activity and started rattling off everything she learned from the pro tip episodes. Wow. And even rolled in with her on the pod demo, the cast and persuaded the endo to approve the pump at the next appointment. And that that's awesome that endo normally makes you wait six months. And that's from these episodes. And so I imagine not just the happiness for that child that's coming. But that maybe now the doctors like huh, why am I waiting? You know? Am I making people wait, couldn't I just do this with them? Right? That's exciting for me. And it's so it's everyone's desire to do better. And then your willingness to say it, when you get to the doctor's office, it's,

Jennifer Smith, CDE 1:01:26
well, then maybe even from that doctor's perspective, maybe you know, this person obviously went in and said, hey, I've learned all of this from this one place, maybe the doctor now has a reference to say, Hey, you know, if you want a little bit more, and you come back to me knowledgeable enough and can say, Hey, this is what I know. Now, this is what I want to be able to use why I want to be able to use it. Again, I think a lot of clinicians are just conservative because they're worried,

right? They're conservative,

for many reasons, but I think worry is a big one. And they want some outcomes showing. Yes, my patient is now ready for this. And unfortunately, I think again, with the technology we have today, I think people are more ready earlier than they may have been years ago. Um,

Scott Benner 1:02:18
so I think that I don't think that people should make the mistake that this is some special girl. Do you know, like she is seriously it's, it's, it sounds self aggrandizing I really don't mean it to be she just listened to the 17 or 18 prototype episodes. And in four weeks, look where she is. And, and I don't know that everybody could be but I think my experiences are that a lot of people are and so that it's possible. I'm in my heart. I hope right now that doctor is listening to this going, Wow, that sounds like something that happened. And like I hope he went was like, I wonder what that kid listened to, you know, like, that's what I want. I want everybody to be healthier, and easier and less encumbered and anxious and all the crap that comes with having diabetes. So, Jenny, I think that's good to hear that. Thank you.

Jennifer Smith, CDE 1:03:04
Yeah, no, and I think that's a good cumulative of kind of, I mean, my overall when I had set out, going to college, knowing what I wanted to go to school for and eventually what I wanted to become, just, it was a very, it was a very, like, General, I want to become a diabetes educator, because I had had really awesome educators as a kid myself. But I never like I didn't have a broad like idea of what I really wanted. I just wanted, I knew I wanted to be able to share what I knew, with people and I wanted it to make a difference. Like it made a difference for me when I was younger, you know, and didn't have the technology or anything that we have today. Right? So, you know, in what I get to do every day, that's, I love it. But what I like more is that

I love this connection that I've that I've

had because of you because of the podcasts and the and what you've put together. I feel like I've reached so many more people than just the individual people that I get to work with every day. You know, I feel like kind of especially these pro tips what we've put together it's just able to reach so many more people in a way that's it's free. Yeah, you know, great and I'm Thank you

Scott Benner 1:04:23
Are you made me I felt like little butterflies and I looked I looked away from Jenny last year just now embarrassed that I couldn't keep looking at her through a video stream while she was saying something nice. I need therapy. Anyway thank you i It is really is terrific. It would obviously not be the same without you. So I really appreciate it. Cool. All right. We did a good job here. I'm gonna go back to your life which is probably just talking to somebody else about IP. So the second

Jennifer Smith, CDE 1:04:51
actually it will be my husband went off to work and my my kids are a band on the house. They're watching I think they're watching Dino Dan right now and I Hear my little man outside the joystick, Mommy, I want to snap

Scott Benner 1:05:06
a minute doing important work. Go back to what you're doing. Go take care of him. And thank you very much.

Jennifer Smith, CDE 1:05:13
Yeah, absolutely Have a great weekend

Scott Benner 1:05:15
to all of the episodes that include the words diabetes pro tip in their title are available right here in your podcast player, or at diabetes pro tip.com. The next pro tip will be out pretty soon. It's all about pregnancy with Type One Diabetes. Thanks so much to Dexcom on the pod and the Contour Next One blood glucose meter for sponsoring this episode of the show. Go to Contour Next one.com to see if you're eligible for a free meter. And if you're not, check with your doctor about moving up, right? You've been driving that old car too long, you deserve something new Contour. Next One. If you'd like a free, no obligation demo of the Omni pod sent directly to your house. Well, you sound like the kind of person who's ready to go to tubeless insulin pumping. I know what you're thinking. insulin pumps don't have tubes. Well, the Omni pod doesn't the rest of them do. But the Omni pod doesn't. My Omni pod.com forward slash juice box. no obligation free demo gets sent right to you takes three minutes to make happen at that web address. And of course, the continuous glucose monitor that has fallen from the heavens, the Dexcom g six, continuous glucose monitor, check it out@dexcom.com Ford slash juice box. If you have not listened to all of the pro tip episodes, I implore you to do so seriously go back to Episode 210. Or find them at diabetes pro tip calm, I think you're gonna really like them. And I think they're gonna make a really big difference in your life with Type One Diabetes. If you've already listened to all of those episodes, and you want more Jenni, find the defining diabetes episodes and ask Scott and Jenny there's more good Jenny goodness out there you can find it. I want to thank you for listening. And if you're a person who has shared the show with someone else, you have my gratitude. It is how the show grows. And I very much appreciate your time and effort. I will talk to you all soon.

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#349 Terry lives in a House

Terry O’Rourke (from episode 53) is back!

Terry O’Rourke from episode 53 is back. Terry and Scott dig deep into type 1 diabetes.

To Read Terry's thoughtful companion to this episode on the blog, go here.

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Check out the Diabetes Pro Tip episodes and Juicebox Docs

+ Click for EPISODE TRANSCRIPT

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

Scott Benner 0:00
Hello, everybody. Welcome to Episode 349 of the Juicebox Podcast today. I bring you a real treat. Terry O'Rourke is back on the podcast. You may remember Terry from Episode 53. Terry lives on a boat. Well, Terry doesn't live on that boat anymore. But he is still an amazing

Unknown Speaker 0:24
what do I want to say here?

Scott Benner 0:28
He's just a good guy. And he thinks about diabetes in a way that is valuable for all of us to know about. And this conversation was completely reflective of that it could have gone on forever. I think this episode is over an hour and a half long. And it could have been two and a half hours long. Terry is a he's a gym. He really is. He's He's an asset to everybody living with Type One Diabetes. And you are about to benefit greatly from that fact. Friends, this episode of The Juicebox Podcast is sponsored by dex comment on the pod. You can get a free, no obligation demo of the Omni pod tubeless insulin pump, just by going to my Omni pod.com forward slash juice box. ami pod will send you a pod right to your house. It comes in the mail. It's amazing. Take it out, look at it, apply it to yourself. Wear it see what you think it's that easy. If you love it, you keep going. And if you don't you toss it in the garbage, no harm no foul on the pods not gonna pressure you. They want you to do what makes you happy. Miami pod.com forward slash juice box. And of course, the dexcom g six continuous glucose monitor can be learned about found out about and gotten@dexcom.com forward slash juice box find out about the continuous glucose monitor that helps Arden and I my entire family and a lot of people listening around the world make decisions about their insulin use that leads to better outcomes. Safer lives. more confidence, better health. You can't go wrong there. dexcom.com forward slash juice box. Let's get to Terry because you do not want to miss a word of this. As you're settling in and getting ready to listen to Terry, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. Please always consult a physician before making any changes to your health care plan or becoming bold with insulin. After you are done being absolutely enraptured by Terry, and loving him as much as I do, head to Juicebox podcast.com. To see the amazing companion piece that Terry wrote for this episode. Just like everything Terry does, it is amazing and detailed and thoughtful and entertaining and valuable to people living with Type One Diabetes. Just go to Juicebox podcast.com. Click home at the top and just scroll down to the blog posts. Terri's is called diabetes teaches if we're ready to learn just like that. This is Terry.

So I have to tell you that your first episode comes up so frequently. People you know, I love the one with Terry Terry Terry, which is your favorite one Terry lives on a boat. And I always I always get back I'm like, you know, funny thing. Terry doesn't live on a boat anymore.

Terry O’Rourke 3:45
That's right.

Scott Benner 3:47
But yeah, it's it's really fascinating. And, and I, you know, it's not that I don't understand why. But I do so many of these that at some point, like I get done recording them. And I think that went well. And that's really the only feeling I usually have afterwards. And then I get back to it some months later. And I edit it. And I think wow, that really was very good. This is a great point here and here. It's it's interesting what I can't remember between the conversation and then the listen back. But yet people just, they love yours. So I actually redid your audio, I spruced up your audio and put it back out because so many people still listen to it.

Terry O’Rourke 4:23
Yeah, you know, I listened to it myself for the first time since that since four years ago, and I just wanted to review what I said. What perhaps I don't want to hit again, you know, right,

Scott Benner 4:33
right. But do you now that you've heard it back so recently Do you think I don't understand why people like it?

Terry O’Rourke 4:40
Actually, I I felt pretty good about the positions I took and and the arguments I made. I'm always concerned about tone. And I realized that I'm I'm not very representative of the Type One Diabetes group, especially online.

Unknown Speaker 4:59
Well That's interesting.

Terry O’Rourke 5:01
Since joining your Facebook group, I realize I'm not the demographic. Again, I'm out on the skirts of the bell curve. much older, I have a lot more years. I'm not a parent. I'm not a parent of someone with diabetes, right? So I don't quite fit.

Scott Benner 5:18
You know, what's so funny is that I can see the people that come into the Facebook group, right, they answer a couple of questions when they come in. And there are, this will flip you out. There are more adults living with type one in that group than parents of kids with type one in that group. Oh, the parents are more vocal. Yes. And so I the back, I think the background I get out of it is that adults find it interesting to listen to someone else talk about management, someone who doesn't have diabetes, but is very much ingrained in it. Yes, that's that's the vibe I get once in a while I'll hear from an adult that gets over. I don't think overwhelmed is the right, the right phrase that but it's too much for them. The worrying? You don't even you know, like when parents are like hand wringing all the time. Yes. You know, and I wonder how that felt to you when you see it?

Terry O’Rourke 6:17
No, I actually the one of the reasons that you you caught my ear way back, when was the fact that you come at diabetes from a much different perspective as a parent, not just a pair up but a parent of a very young child? Yeah. And I found that perspective, very interesting, because it was not mine at all. Yet, it was somebody who cares about it. Who doesn't have it doesn't have type one, who cares about it so much that they do they assume a position that I've taken that I'm going to do whatever it takes to do this? Well, right. In fact, I think a parent of a young type one probably is more intense than even an adult, you know, caring about their own health.

Scott Benner 7:03
It really is interesting, and I say it a lot. It's there's this mixture of love and concern. And then you can be dispassionate, in as much as that it's not happening to you. So you know, somebody has a low blood sugar. And I know I did the right thing to bring it back up, and it's going to come back up. I'm not the one, I'm not panicking. I'm not the one who's having that horrible feeling of I should eat or I should eat more. So I can stay calm and say to her, listen, I know this is how it feels now, but in a few more minutes, you're not going to feel like this anymore. And you're going to be right back to to what you need to do. And we're not going to be fighting with a high blood sugar if you just hang on for one second. And I can console her and sit with her if it comes to that. But it's not happening to me. I always think if it was happening to me, I would just keep it.

Terry O’Rourke 7:50
Yeah, it's a much different perspective. When you're when that's, that's it, you've got skin in the game. It's it's and I try to make this point and sometimes I offend people with that. Especially medical professionals. They just they don't like to hear that. I think you know, you're on my side. I understand. But you don't have it. Right. Right. your your your perspective is probably as close to somebody that has diabetes as you can get without without having it. That's just what what caught my ear.

Scott Benner 8:23
Yeah. I appreciate that. And you know what, you did something back then, by the way, I think you were let me make sure I know. Because I don't know when this is gonna go up but the earth tomorrow, the 300 and 36th episode of the podcast is going up. Yes. Congratulations. Thank you. And you were on episode 53. I'm looking right now. Yep. And that was my gosh, March. Oh, interesting. March 23 2016. That was just a week shy of, you know, my gosh, five years ago, is that right?

Terry O’Rourke 8:52
That was four years ago. That was three weeks before I moved off the boat and moved from San Francisco to Portland. Okay.

Scott Benner 9:00
Yeah, that's that's just such a long time ago, I when I started doing this, I thought, no one's gonna care about this. And I'll do a few of these. And it'll probably stop and then I'll just be doing it for myself. I'll be talking to myself for a while. But yeah, I just couldn't believe but but my point was, is that you talked about your episode in, in a space online in a community that you were in, does it even exist anymore?

Terry O’Rourke 9:25
Oh, yeah. So to diabetes, not to beat somebody else's drum. But I've been participating there and writing there almost daily. For the last 10 years.

Scott Benner 9:35
You do a nice job, sir.

Terry O’Rourke 9:37
Thank you. That's my home online and

I'm a little bit divided about whether you know, I should post the link. You know, when the episode comes up, I almost prefer somebody else in the community to notice and say, Hey, Terry's done on the Juicebox

Scott Benner 9:52
Podcast. It's that's it's interesting, isn't it? That that feeling that you don't want to? You don't want to blow your your own horn like you just hoping I wonder if somebody else will find it and just mention it. It. I walked that line all the time, there are times I record things and I think, wow here, I know there's a group that would really want to hear this. But then you feel odd about just showing up in the group and saying, Hey, I just interviewed this person, I think this would be really interesting to you and leaving it there because it feels self serving. But I wish they knew. I'm okay. The podcast is being downloaded enough. Like I don't need a couple more I really think that this is that this is really for them. But it's it's hard not to feel like like, you also come from a different generation of sharing online. Have you noticed people shifting the way they feel about things like this? Are you just stuck in the way you feel about it? Or? Or

Terry O’Rourke 10:44
Oh, I, again, by reference to the bell curve, and how I seem to live in the skirts. This is also true. I am I am technically not part of my generation, or I am but I'm more of like Bill Gates. Generation. I've been using loop since November 2016. Okay, you know, six months after our last meeting posted? Oh, no kidding. Yes. And I thought about contacting you, I thought, Hey, I'm gonna do something new. I thought you know what, I'm gonna let this just let this thing age a little bit. But I don't know many people my age that are using, you know, the Do It Yourself automated systems. Right. And so I don't think I'm a good representation with regards to technology and the online communication.

Scott Benner 11:33
What about your eight? Well, first of all, how old are you?

Terry O’Rourke 11:37
I'm 6667. This summer.

Scott Benner 11:39
So So what about, you know, you're not seeing a lot of people your age online using the technology? Do you see a lot of people online sharing the way you do? Talking about diabetes?

Terry O’Rourke 11:50
Yes, yes, there's a lot of people in my age group and older, you know, into into their 70s. And I, I visit some Facebook groups, but primarily, I'm on to diabetes. So there's quite a quite a few people in my age category. In fact, we're missing kind of the younger cohort that you generally appeal to. If you're if your Facebook group is any indication of the demographic,

Scott Benner 12:15
well, you're writing, you might as well be chiseling hieroglyphics into a wall. Yes. Nobody wants to read anything.

Terry O’Rourke 12:22
Yes, it is. It's true. It's true. But I you know what? Writing first and foremost is the benefit for me. It clears up cobwebs, and exposes illogical thoughts. And so it's it's a, it's just a it's a good practice.

Scott Benner 12:38
No, I had a conversation the other night with Have you listened to the episodes with Kenny talking about loop? That was recently?

Terry O’Rourke 12:46
I don't recognize Kenny. I listened to almost everything. Yeah, in fact, the Dexcom guy, what's his name? Thomas Walker. Tomas. Yeah. We're just recess. Yes. I mean, I had all kinds of comments on that one, I thought, Oh, I don't I don't want to I don't want it to totally take over our conversation. But

Scott Benner 13:03
well, it. So it's, it's interesting, how I think the interviews end up falling into segments. And so like, I brought up Kenny, because Kenny and I have been kind of looking at Arden's loop settings together for the last week or so. And so we got together the other night, just on, you know, just face to face like this. And we had a conversation, we're eventually going to record it, but we're trying to figure out what we think first. And that process of talking over diabetes stuff and bouncing it off with someone else, whether it's in an interview or in writing or something like that. It's incredibly helpful because you say something, and then you think that's not right. And it wasn't until you said it out loud that it really, it really strikes you right? Yes. Yes. And so you have that experience while you're writing?

Terry O’Rourke 13:51
I do and I also you know what your description you just said about you know, in conversation, you discover things about the problem. I used to work as a electronic technician for a major airline Hmm. And that was my style of troubleshooting. I could not just say Oh, look at this circuit look at this component. I just I got a sneaking suspicion this is the problem right? I would pull another technician over with me and says okay, this is what's going on. This is what I've tried. I've tried this and this and this. And as I'm describing it, I will often think oh, I should have tried this other thing. So the my verbal verbal part of my brain kind of kind of hooks on something that oftentimes proves to be the key insight and but it was the actual talking about it that

Scott Benner 14:40
they get to it. Do you ever have that feeling where after it happens you think I didn't even need this person here? I just did the conversation right

Terry O’Rourke 14:48
Right. Yeah. And I had there was a lot of technicians who prize this lone Eagle thing that you know, Eagles don't flock was there their creed. Oh, no kidding. Yeah. You know, you know if you have to ask questions as a sign of weakness? I thought No, it isn't. It's just another way of thinking and interacting. Yeah, my brain is different than yours. And I'm not alone evil, no more social that way.

Scott Benner 15:13
100% you have to, for me and I and I see their side of it too, because there are those people and, you know, looping or pumping, or all that stuff brings it out is that they just look. And then there's the answer. Yeah, they see the numbers and they look at something, oh, the answers here, I see those things. And I start painting pictures with words like, I don't know another way to say it, like I talked my way through it. It's like, you know, it's like driving a car up a hill, when it loses momentum, you need to keep your foot on the gas. Because if you do that, and then all of a sudden, I've explained why you need a good base of bazel. And yeah, and but I couldn't tell you, you know, at 12 o'clock, I saw a negative insulin on board. And that's how I knew that the bezel is wrong, or, you know, like, right, that just wouldn't strike

Terry O’Rourke 15:58
didn't come out of a formula. No qualification. Yeah. And I think you have an unusual ability, it's been my observation of what you've done over the years, you have an unusual ability to get things on a visceral level, it's like, oh, this is either too much or too little insulin, or it's too soon, or it's not soon enough, basically, just two dimensions don't size and dose timing. Yeah. And that's, you've said that many times. And it's not that complicated. When you get down to it,

Scott Benner 16:30
that means a lot coming from you, I very much appreciate you saying that I really do. My, my reasoning behind that is because I wrote about diabetes for so long. And I don't know how good I wasn't writing about it. But I would find that I would write forever to try to make a point. And that I just started thinking, no one's gonna read this, or they're gonna get bored or, or I'm gonna be unclear at some point, right. And, and the goal here isn't a click to my website, it's not a download to the podcast, like, you know, the goal is for someone to go live their life in a better way, and have an aha moment of some sort and be able to do this on their own quickly not to spend their entire day thinking about their boluses and their basis and their diabetes, that shouldn't be, you're not living to serve the diabetes, right? Like, you need to figure that out. So you can go have a life. And so I kept thinking, How do I boil this down like a need to distill it, distill it, distill it down to T shirt, slogans, so that people can have a moment and think, Oh, I know what's wrong here, I need more insulin, I got a note this morning. She's gonna hear this. And so I feel weird. But I got a note this morning from you know, a person who's in the diabetes game, who also has a child with Type One Diabetes. And it's a long explanation of what's been going on with their kids, blood sugar, and I think to myself, she knows this just needs more insulin. Right? Like, it's just, it's more like, I don't know why the kids needs went up, meet the need. And that's it. But

Terry O’Rourke 18:01
she's fearful of maybe making a change. That would be adverse, I

Scott Benner 18:05
don't even know, I just think it's interesting to watch him. People do it all the time they start. I don't know, like, you know, sometimes, like simple dishes are the best. Like, you know, you don't have to you don't have to dig in the back of the refrigerator and go, Oh, my gosh, we have carrots in the way and carrots, you know, just you know, blood sugars going up. It's not coming back down on bolusing. All the time, we'll put some of that Bolus into Basal. And let's see what happens, you know, and they know it. I know they do. Yes. But when you get caught in the vortex of it all happening, it's hard to just simplify and start over again, every time I think that's always been my goal is to talk about diabetes in a way that will strike you in the moment you need it and be actionable and not lead you down, you know, a three week rabbit hole of not being able to figure out what's going on. So yes, I appreciate that. Thank you very much. Yes, you're welcome. I mean, it means a lot and you can you tell me all this time you've spent it you know, we're you're writing and talking about diabetes, what's the beyond you beyond that? It's therapeutic and helps you Why do you continue to do it because it is it takes up time.

Terry O’Rourke 19:15
It feels good. I it's almost like somebody who is a you know, an athlete and training and, and if they miss they miss a day of working out, they miss it. They just they kind of just don't feel right today, you know, I'm usually go off for a three mile run and I didn't do it. I I get a lot of pleasure out of writing. And I've learned a lot about myself and I've learned a lot about diabetes. And and I realized it's such a great tool to clarify your thoughts. Yeah. And if you can express it in writing, then it probably it holds true and plus it also you know, if you get into a problem where you're you, you get into kind of Have a circular thought pattern. something's bothering you something's worrying you and you just visit the same issues round and round and round Round. You put it on the paper, you break that cycle. Yeah,

Scott Benner 20:10
that's interesting, and then helping other people. Is it your main focus? Or is it just a happy side effect of

Terry O’Rourke 20:17
putting it weird? I've often, you know, 2011 I retired. And so I was five years into retirement when I talked to you last time and almost 10 years and I've said to people, I said, this is it's kind of a strange hobby to have. But you know, some retired people, they do woodworking, they do radio controlled airplanes, they golf, I, I write about diabetes, I talk about diabetes, I, you know, I, I do this a couple hours every day, I'm reading, you know, scientific studies, I've done a lot of reading on COVID-19. I just posted a, an article today about the effects of vitamin D, and sunlight and skin color. So that one's got the opportunity to be very controversial. But anyhow, I, I've learned a lot. And I thought, you know, if I could do my life over again, I might have chosen to go into a medical field Really? Well, and especially this front seat of type one diabetes. I've had a hundreds of thousands of hours of experience, the level of experience that dwarfs any clinicians experience, even if they count all their college, all their medical school, all their continuing medical education credits. Everything. I'm as far as dosing insulin for me, they can't touch me. Yeah. And I didn't really appreciate that. Until the last, I don't know, five, six years.

Scott Benner 21:52
Do you think you reach more people doing what you do than you would as a physician, though, I,

Terry O’Rourke 22:01
you know, I don't know. I don't know how many people I mean, the website that I participate in the most, I don't think it gets that many views. I think what you do gets way more exposure. Well, podcast.

Scott Benner 22:14
Well, that's interesting, because I, I see the you know, I get responses daily, about the show. And it's interesting to get a, you know, an email today that you realize, is really the culmination of, you know, three, four or five, six months of this person's life. Because it's, you know, hey, I've had two a one C's now they've come down significantly, I'm doing this, I'm more in control, I feel better, whatever the note ends up being. It's interesting that they didn't have that whole thought that day when they wrote it, this has been happening to them for a while. So when you receive three emails today, and for tomorrow and to the next day, it's interesting. Those are the people I began to touch many months prior to that. Yeah, it's a weird, it's a weird thing to kind of wrap your head around, because in my life, it's happening right now. But for them, this is this is a long story, they're telling us. I wish that uh, I wish that you do such a good job. I wish that I wish more people saw it. I wish more people saw anything helpful from anybody. But you said earlier that, you know, a couple of times that you're on the outside or maybe on the fringe of this. How do you mean that? Why Why are you not?

Terry O’Rourke 23:30
Well, okay, let me there's a study that came out about a year ago, and I just wrote down the statistic because it's so powerful. They basically looked at two groups under 18 and over 18. So children versus adults, okay. And I think it was it was published in diabetes, therapeutics, technology and therapeutics or something like that. It's a group out of California. And they said that only 17% of children have an A one c under 7.5. And of the adults, only 21% had an A one c less than seven. So there I am, with what the ANC well under that, and I'm only one in five. So what's going on with that? It's number one, I can say diabetes is hard. Controlling is hard. But there's people like yourself, and people like me, and there's many others out there. But we're in a minority. Yeah, that know how to do it well. So I want I want to share that. I don't want to be blowing my trumpet. Like, hey, look at me, I can do this. No, I want I want other people to say, Oh my gosh, what you did, I tried

Scott Benner 24:45
and it worked for me. It could be aspirational. That's like success. 100% it needs to be aspirational. It needs to be Listen, you can only control you, right so if you put good information out in the world and some people are off put by it or they're offended. You're like, Look, I don't know what Trey one season you haven't said it yet. But you know, I say Ardennes all the time, because I want people to know what's possible. I don't care if you think I'm good at it, I want you to look and think, but there's a 15 year old kid somewhere doesn't have diet restrictions. He's got an eight, one C and the fives for years and years and years, though, that seems amazing how, you know, and then if you come here it, and it's not for you, or you don't think you can accomplish it, or whatever ends up being okay. You know, like, I'm not trying to I'm not trying to change everyone's life. I just I, at my core, I feel badly that some people are having these outcomes. And they believe that that's just what exists. If they if they could find out more exists, and they decide they don't want it. You know, that's on them. That's fine with me. But I feel badly that people don't know.

Terry O’Rourke 25:51
Oh, there is another another item that's bandied about the diabetes online, and it comes up in your conversation regularly. So this whole idea of your diabetes may vary. The face of it first analysis, of course, it's true. We all have different bodies we have we're different genders. We were different ages. People are unique. But I found that that your diabetes may vary has a dark side. And that dark side is somebody considering Well, maybe I should try what Terry suggested, or maybe I should try what Scott suggested. But they toss it off, they dismiss it. And they say no, I can't do that. Because my diabetes is different. I have problems with my hormones or this other, they got 100 reason is it's all under your database may vary. And that I think, just torpedoes your ability to be curious and to follow up and to test and experiment.

Scott Benner 26:48
It gives you the feeling that there are different kinds of diabetes. And the person who's having this success over here must have a better and easier kind or you still hear people say sometimes I'm brutal. I was like, Yeah, no, you're probably not. I don't think that's an anachronism. Yes. It's not a real medical term. You know, like, what if, what if it turned out that your, I don't know, your bazel is too high, and you're always falling? Because that you just never thought of that before it, but they look at it like, Look, I'm brittle, like my blood sugar won't say stable. And, and it's funny, because I believe I know the person who came up with that. That acronym like your diabetes may vary,

Unknown Speaker 27:29
and it is a truth and

Scott Benner 27:30
100% true in and I believe in the, in the facet that they meant it in. It's really great advice. And but who would think that it could bleed into what you are talking about and become so it's detrimental? Yes. Yeah.

Terry O’Rourke 27:46
We don't always want to face maybe at some level, we see a truth that we think you know, what, maybe I'm not doing this right. But then you're the stronger part of your personality takes over and said, No, no, you're fine. You know, it's just because your diabetes is different than theirs. Right. And it's, it's, it's, it's not helpful, it really caught people need to be honest with themselves. And of course, we all we're all human, we all do this to a certain extent, but nobody's perfect. It's

Scott Benner 28:13
incredibly difficult, and you only have so much bandwidth that you have to work with every day. But I I want people to know that if you get the stable blood sugars that you're talking about learn how to Bolus for meals, it creates a lot more time and and freedom for thought about

Terry O’Rourke 28:32
quality and quality. That's why I you know, I, I often said to people write about it that

if you want to learn a lot in a hurry,

Scott Benner 28:51
the Dexcom g six continuous glucose monitor allows you to see loved ones blood sugars from a distance that can be across the world, or across your living room. The dexcom g sex has Sharon follow, right. So with an iPhone or an Android, you can see your child's where your wife's or your girlfriend's or I don't care any loved one at all. Anyone who wants you to see their blood sugar, you can see it remotely right there on your phone, the speed and direction as well as the number. My blood sugar is 125. And my mom is at work and she can see that. That's how that works. My blood sugar is falling. Its falling two points per minute, one point per minute. I can see that. And so can the person following me? Check out the dexcom@dexcom.com forward slash juicebox and get started today with what I think is one of the most valuable pieces of diabetes technology that has ever existed on the planet. No over exaggeration. dexcom.com forward slash juice box. See everybody's blood sugar. See your own See the speed, see the direction, make better decisions about your insulin with that information. My daughter Arden is about to turn 16 and she has been wearing an omni pod tubeless insulin pump since she was four years old. Even I can do the math on that, that sounds like, Wait, hold on for, like 12 or 13 years. All right, maybe I can't do the math on that. But I do know that by wearing a tubeless insulin pump, you have freedom that you just don't have with the tube pump, the freedom to swim and continue to get your basal insulin to take a shower and have your basal insulin to be active without having to disconnect, right? soccer games with a tube hanging off of you and the pump. Where do you hook that on your soccer shorts? Exactly? I don't know. But you don't have to worry about that with Omni pod. Because Omni pod is tubeless. It is self contained. And the controller that you use to make you know, hey, I want to Bolus that kind of stuff that's not connected to you. Wireless. Magic, understand magic. It's not really magic. It's pretty simple technology. But that's not the point. It's wireless. The Omni pod tubeless insulin pump has been a mainstay in our life since diabetes arrived. It is one of the best decisions that we have ever made as a family. You don't even have to take my word for it, which is kind of the cool part. All you need to do is go to my on the pod.com forward slash juice box. And Omni pod will send you a free, no obligation demo of the Omni pod right to your house. They call it a pod experience kit. I'll send it to you. And you can experience the pod like you see where the name comes from, for yourself in your own time in the privacy of your own home or loud and proud wherever you want to be. Doesn't matter to me. Put it on, wear it, take a shower, go for a run, do your thing, live your life, see what I'm talking about. Then if you want to get started with Omni pod, you can that easy, come right to your house in the mail. The mail is magical to you know, just put something in the thing and shows up somewhere else. Like teleportation. I mean, if you don't think about the fact that it's in a car, or truck, or whatever the mail people use, we've gotten pretty far off topic, my omnipod.com forward slash juice box dexcom.com forward slash juice box links in your show notes, links at Juicebox podcast.com. Get out there, do something good for yourself, do something great for someone you love. Get going today. Stop waiting.

Terry O’Rourke 32:49
Give diabetes, everything it asked for maybe you only do this one day a week, maybe you'll only do it one day a month, but have a time period setup where you Okay, whatever diabetes wants, I'm doing it, whether I need to eat another I need to go out and walk around the block three times may need to take a little bit more insulin. But you just basically live your life for diabetes. And people say well, I don't want to, you know, I don't want to be a professional patient or whatever. But you know what, you have diabetes, diabetes is not part of your life. Diabetes is your life. It's just as much a part of your life is the color of your eyes, or the color of your hair, or whether you have here or not.

Scott Benner 33:30
And if you do what you're suggesting, and once a week, it's a great idea. Once a week, give yourself over to it, the things you'll learn in that one day will start to translate out to the rest of the days of the week

Terry O’Rourke 33:41
happens is you start to accumulate a body of knowledge about yourself such that it becomes part of your thinking. And now the whole task is smaller. And you do have you do have more time for what you think is your real life. Yeah.

Unknown Speaker 34:00
No, I appreciate that.

Terry O’Rourke 34:02
It's, I think it's an effective too. And I found this I went through a crisis in 2012, which we talked about in your previous podcast with me, where I was diagnosed with a complication and I basically went through this I just retired, I thought I'm going to give diabetes, everything at once. I learned so much that I found out that my blood sugar's settled down. It took less effort. After many months. Yeah. And I my whole life was better. So what we're trying to avoid at trying to bargain with it and say, well, I'll do that later. It doesn't work. We have to say, like a toddler, you know, a toddler, a fussy toddler, you can try to put them off and say get away, you know, you're just not Yeah, you know, or you can address their needs at the time that they need it and in the end, you're better off they're happier. you're happier.

Scott Benner 34:56
Yes, yeah. Yes. What do you think that when you say things like this Are you sometimes met with people who brusque about that? And is that what you mean about being a little bit on the outside as well, like, people don't want to hear it directly like that people

Terry O’Rourke 35:12
don't want to, I think there are people like me, I'm saying them online. And people like yourself, where they do want to figure it out and learn as much as they can and make their life better. But there's a whole, there's way more people where they're just stressed trying to strike the deal with diabetes, like whoa, don't take over my whole life, I need to work, I need to be a parent, I need to be a spouse. And, and they try to make that division that try to divorce the idea of their diabetes versus the rest of their life and making that bargain. It's, it's not the best thing to do, I really do think you need to recognize, indeed, you have this, you have this, this disease. And and you need, you need to treat it well. If you want to, if you want to have if you want to become more real you

Scott Benner 36:03
once or twice a year, maybe more like once a year, but it's happened a number of times since the podcast has been going, I will get an email that is long and well thought out. And and borderlines on hateful about I don't understand, and you don't have diabetes. And this is hard. And it's not what you're trying to say it's not it's doesn't work the way you think it does. Really, really angry. And then each one that I've ever received has been followed up about six months later, by an apology. Yes, I went back I listened again, that thing you said made sense. I tried it my a one C's down. And they all end up saying the same thing. And I actually had this experience with a with a person who came on the show. She said it right on the show last year. She said I realized I wasn't mad at you. I was mad at myself. Because

Terry O’Rourke 36:56
exactly right, right. Well, I was gonna say yeah,

Scott Benner 36:58
and I and I thought well, that's really it's been one of the more meaningful experiences that I've had kind of behind the scenes with the podcast, is to watch someone go through that experience, because it shines a light on just how horrible diabetes has been for them, that it pushed them so far into that corner, that even faced with information. That's I mean, let's face it, I'm not talking at a high level on this podcast, I have pretty much distilled this all down as far as I can. If

Terry O’Rourke 37:29
this is your appeal, bread, I've dumbed

Scott Benner 37:31
it down. Sorry, I've made it so silly. I can understand that. Okay, and so but but so when somebody sees that, and it's still like, Oh, that's not right, this doesn't work. But I see as a person who's been trapped in believing that that's true, that, you know, they got the bad kind of diabetes. And it just none of this is going to work for them. And that's a terrible thing to see that people go through all the time. And everyone that comes out of that or, or very excitingly, never experiences it because they get the information up front. I'm always very excited for those people. You know, yes, they don't they either have broken free of it, or they may never ever have that feeling. So

Terry O’Rourke 38:08
yes, that's a good observation. Interesting. Anyhow, it's, it's not it's an ongoing thing. And so, as the as I'm getting older, I'm starting to starting to wonder about, you know, how this, how this last and then there's this pandemic that we're in the middle of, and all the issues that's brought up.

Scott Benner 38:30
What what kind of impact has it had on you? I mean, personally and with your diabetes.

Terry O’Rourke 38:36
With my diabetes, it hasn't been a problem except for the knowledge that people with diabetes and other other comorbidities in which I have other comorbidities. I have some heart problems, where I feel like I'm in the crosshairs of some of some Hunter Hunter being the virus. And I've kind of settled down with with that idea. But I I take reasonable precautions. I I put myself into quarantine, probably 10 days before the governor of Oregon decided it was a good thing, okay. And I was starting to pull back I developed a habit starting in the fall, I was going to the gym every day just to use the sauna. Because the heart healthy effects of sauna Yeah. And I was I had tremendous benefits from it. I just was amazing. How good I felt. And I was taking the street car I don't own a car. So it took the street car to the gym every day. And so as the stuff started coming up on the news, it was in February and I thought okay, I live a mile 1.1 mile from the gym. I'm not gonna take streetcar anymore. I'm just gonna walk so I so I did that just walk and that I thought this being in the gym with you know, in the locker room and everything I said this is not going to work either. And so I suspended my membership, right? Probably about two weeks before the gym club. So I made those adjustments. I lucky enough, I have an adult daughter that lives in town and she does grocery shopping for me. So I've made made combinations that way, because I know that that would be one place that I could pick up the virus. So it's kind of interesting in that I'm more of an introvert character. And, and reading and writing online, occupies a lot of time for me, like I said, it's my retirement hobby. Yeah. And I going into quarantine wasn't that big of a task for me. I think somebody like yourself would have a harder time, who is more gregarious, that really likes to mix it up with people.

Scott Benner 40:44
It hits me a little bit. It's funny first, that a lot of people I know who have over the years written about diabetes would would describe themselves as introverted. And it's funny because when they're asked to speak or do something, they often turn it down. Because that's just not where they're good. They work best, you know, when they're when they're speaking through their keyboard. But I get so I've been the person I'm the I'm, you know, you've heard of the Designated Survivor. I'm the opposite of that. I'm the person in my house that we've decided we could all live without if he drops dead. So I get to go out to pick up the groceries and things like that they they must have gotten together behind my back Tyrion been like which one of us can we you know, do without it's him? Well, we'll send him for the chicken breast, you know, so I get out in public. And it's not lost on me what you said. I like to talk to people. And I know that it might seem irritating to some people, but I don't think I am. But I am the person who will say something offhandedly, while we're checking out at the grocery store, or, you know, I'll make eye contact with I use this this a lot. But you know, sometimes you see a guy grocery shopping with his wife and, and and she's just going down the aisles so slowly, and then you can see the guy behind her is just like, Come on, let's go I want to get out of here. And I'll make eye contact and smile a little bit and you'll get a knowing smile back. It's a Yeah, you know, you don't quite tap your wedding ring, you know, but it's, uh, it people see that all that's gone, not being able to see people's faces I find upsetting, and not because I can't see them. But because I start feeling like, well, what's the point? You don't I mean, like if we're, if we can't see each other, and we can interact? And what's the there's no need for us to be together at all? And then does that mean I I'm born? And then what? How do I learn and grow and become social and buy a house that I can hide in one day? You know, like, Is that is that the play? You know?

Terry O’Rourke 42:39
So getting back to your earlier question about my diabetes and the pandemic. I, I was upset more early on. But the observation that younger people didn't seem to appreciate their role of possibly infecting me. All they heard was young people don't have severe consequences, not to worry, it's only the older people that end up and they totally lost the concept of being a carrier, especially an asymptomatic carrier. And I've seen time and again where people you know, they just they crossed by you closely on the sidewalk you know, not maintaining a six foot distance. Or even like I live in a high rise building and people in the elevator you know that they don't they don't want to number one, I stopped I stopped riding the elevator with people I just refuse I won't get on if there's people on it. And I tell people No, I'm riding alone. Yeah. But I just noticed that younger people were that they're not tuned into this, you know, like, the kind of spanning the lobby where my path has to bisect their conversational group tries me nuts. And actually one of those guys I know that was in that instance, I looked outside my my doorway one day because I heard somebody hacking and coughing, it was the COVID cloth, right? He was waiting for the elevator. And this guy was in though and I think, what does it What does he understand about this idea? You know, my health is more fragile than theirs and they just like, it's like they're not paying attention. It's almost like it's not evil or mean, it's just thoughtlessness. You know, it's interesting. I heard this stat the other day, and it was all these statistics are simultaneously comforting for some people and completely frightening for other people. And one of them was that a number a larger percentage of people who are dying as elderly patients with COVID-19 have already outlived their life expectancy. And it went and it was said like, see, it's okay. You know, like and you're like, Well, wait a minute.

Unknown Speaker 44:53
Yeah, I don't

Scott Benner 44:53
know if you realize it when you're 30. But when you get to 70 you don't wake up every morning and think oh, well, you know I guess it's cool if I die today because I already made it past 67 or whatever, you know, like that's that's not how you don't become you're not on some sort of a countdown clock in your mind when you get older and just thinking, oh, I've used up all my good time is is all cake. That's it, that's a an observation that's made macro and and this is such an interesting time to consider the idea of being uptight being you being micro and being macro about thinking. It's and and people can't separate the two oftentimes, or they do. And they're, they're amazing about it, you'll see people who fall more into like the social justice warriors kind of category, they're, they're covering their face six different times, they won't go outside, they're trying to save you and everybody else. And that's great. But then there's plenty of other people to your point who either don't believe in it, or don't care, or their desires end up being more important to them than someone else to say further

Terry O’Rourke 45:55
not paying attention or watching the tiger thing. On the videos. I it's like, they're more given to amusements than they are to, to researching things closely.

Scott Benner 46:09
Yeah. Yeah. To really understand what it is they're saying. And not just go. It's interesting, because this, it, it really does apply all through life in many different ways. Your first thought, probably not right. You know, unless it's about the thing you're specifically trained in or understand in some way that's, you know, over and above what everybody else does. But when you say, you know, you see it joked about online all the time, you know, there's 10 doctors are telling me to wear a mask, but they some guy went to high school with said it's okay, I don't have to, you know, like, it's pretty, that's their first thought, I always find that to be a very human idea that when you think something is correct, it would be strange to doubt yourself, right? Because it would put you in indecision constantly. Because just think of all the things all day long we do that probably could be done better. Right? You know, but that's my first thought. So this is how I handle it. And, you know, you only need to be married for a little while to have someone look at you and say, why did you just throw the one gallon container of milk in the recycling bin without pushing the air out of it? So it would take and then to see that person go? Oh, I've never thought of that before. You know, like so your first law, it's not always the right one.

Terry O’Rourke 47:23
It's what I find interesting about listening to podcasts like yours is I hear things every once in a while I think I never thought of that. Yeah, I'll try it. I'll do it. I don't have a ready example. But it happens all the time. And these little things over the years, they add up. Yeah. And they really do accumulate to your benefit.

Scott Benner 47:45
Well, you brought one up earlier that I hear about all the time, just the idea of a sauna. Just a nice, what, 30 minutes, right, a nice dry heat for 30 minutes, and you get that or real regenerative feeling from that?

Terry O’Rourke 47:59
Well, and there's there's a there's actual medical studies done, you know, and Scandinavia and Finland, in particular, kind of the home of the sauna, or one of the one of the places where sauna occurs the most, they actually did a study and people my age group with heart disease, and it was shown to be beneficial, it reduced the rate of heart disease and stroke. And, and people in my age category. And they made a distinction between people that did it more than four times a week and people that did it less than four times a week. So this whole idea of you know, sweating, and of course, it's interesting, this sweating idea it spans every culture, you know, the indigenous Americans had sweat lodges. Right? And in Japan, it's a thing it's it's there's this sweating thing is common all all over the world through history. And anyhow, so they did this, they did this study, and they show that it actually does have a medical benefit. And it I think, I think it's a it's a real thing, and I really missed that. Yeah. Now that I'm not going do you

Scott Benner 49:04
ever shock yourself too cold as well? Or do you stick with no,

Terry O’Rourke 49:08
well, I I do that in the sun. I will take a cold shower afterwards. Okay. Yeah, that's part of it. That's In fact, what I first learned Asana was I was a like a summer camp for high school kids and young adults up in northern Minnesota and they had a sauna. And we would we would get out of the sauna and run run out and dive in the lake. And then I visited there one time in the winter and we got onto the solder and you know, it's like 30 degrees below zero and we were all go out and roll in the snow and then come back in. And there is something to that. Yeah, no. It's good for your immune system. I

Scott Benner 49:45
don't know a lot about it. But I have heard people talk about like hot and cold like kind of shocking to your system and how good it can be for you. I and I had a similar experience that you as you prior to this all happening maybe four weeks prior to it. kind of started a different kind of way of thinking about my, my health. And I, one of the things I was doing was seeing a chiropractor, just to try to help get some of the tension out of my lower back. And he was having real great success with it. And I was feeling much differently and improved. And then I couldn't go see him anymore. And now I'm back exactly to where I wasn't. And I've sat here and tried to think of what he was doing and tried to mimic it somehow. And I just, I can't find it, you know, whatever that thing is. So it's just, you know, little things, and I don't know if he was doing anything great. I think he was just kind of creating some separation for my spine. And and it was, I felt good. I felt like there was inflammation going away that I had. And it was it was progressively getting better. And I thought, Oh, great. And then one day they called they're like, don't come, you know, you can't and I wasn't going to it by the way. Yeah, I acted like I was like, Oh, I'm so sorry. But I wasn't coming. That's really something. Well, I mean, listen, you have to protect yourself. And it just, it doesn't make sense not to I would think for you. I mean, with respect your age is more of an issue than your type one because your type one's not causing you any medical concerns, right?

Terry O’Rourke 51:18
No, no, I type one is, in fact, there's another interesting study referred to about the number of people in the United States and probably around the world who are metabolically healthy. And they had a very specific definition of metabolic health being the size of your waist versus your height, the your triglyceride number, your high density lipoprotein number. And there was there was one other measure, very simple things to measure. And they found that in the United States, that only one person in eight, only 12% of the population was metabolically healthy. Hmm. Of course, somebody like me, I was automatically tossed out of that, because I you know, type one diabetes, I take a hypertensive pill, oh, that was blood pressure. What is the other measure, okay? Blood unmedicated blood pressure below a certain level. So only only one person at eight is metabolically healthy in this country. And so I think, you know, I am probably more metabolically healthy than then most people in this country that don't have diabetes. Yeah. Those other seven for sure.

Scott Benner 52:27
I keep wondering when that conversation is going to start happening, mainstream. The and I know, it's, nobody wants to feel at fault ever and that so then a lot of a lot of what we get back, even through, I don't want to just say through the news, I even think through some podcasts and blogs, nobody wants to hurt anyone's feelings. And so things are kind of kept vanilla. Because of that. Sometimes I think we Yeah, a little bit what we were talking about earlier, I keep wondering when someone's gonna say, Hey, I don't know if you noticed, but sick people get sick more often than, well, people get sick. And maybe we should all be looking a little closer.

Terry O’Rourke 53:05
I've heard the analysis about this COVID-19 pandemic, is that it's not so much about the virus itself and the pandemic, as it is an indictment of our overall metabolic health. And that we need to pay attention to this underlying condition. If if that number was not only one and eight, if that number was like six and eight, were metabolically healthy. Do you think we'd be having the the incidence and severity that we're experiencing now? Yeah. Well, it wouldn't happen. And it shows the people, people who have high blood sugar upon admission. High one c upon admission, those are the ones that get it the worst, or the the risk goes way up. Right.

Scott Benner 53:49
And have you heard people talking about that? That having COVID-19 has thrown some people into type one diabetes, it's been the stressor at the end. that's starting to be

Terry O’Rourke 54:01
interesting. Yes. And I know we've always made these associations. And I happen to have my own little story about that I, I was bitten by a tick about two years before I was diagnosed with Type One Diabetes. And I came down with something called Rocky Mountain Spotted Fever, which kills like one in five people who get it well. And it's very characteristic spots on the palm of your hands and the bottom of your feet. And I a couple years later, I came down type one diabetes, and I've always thought, well, I wonder what the connection is there. Because it was an immune immune problem. In fact, I was on IV tetracycline for 24 hours, which is like corrosive to your, your blood vessels. So I don't know if my immune system responded to that. Or it could be more complicated but seems like everybody with Type One Diabetes has a story about whether they caught the flu a few weeks before or they had something else. Go on, right? But there's no cause and effect. It's just Association.

Scott Benner 55:05
It's how I wonder about it too, like, do you have the markers, and either get lucky enough to not bump into something that taxes your system to the point where it pushes you over that edge? Or? Or are there just some people that don't have the markers and can't get sick like that all the time, and we just never develop type one. I assume that's, you know, that's how I sort of think about it. And, and, you know, Arden had coxsackievirus, right before she was diagnosed. And that's even hard to think about, like, is there somewhere, you know, I don't take it personally, like, I don't feel like you know, did I did I take her to the store and she got sick? And that's why it happened. But is there a world where if we didn't bump into a certain person on a certain day on wouldn't have gotten diabetes until she was 20? Do or maybe not, or more, never at all, or whatever?

Terry O’Rourke 55:50
Yeah. Faith plays a role. It's like the soldiers say, the enemy gets a vote. No, it's a vote, and you don't that's out of your hands. Yeah. You can't worry about all that. You just thank your lucky stars for the things that didn't, you didn't get tapped for.

Scott Benner 56:07
I heard my son say one time, you know, sometimes people will say to you, like, you need to put the ball in play there. We really needed that. And he'll say, you know, the pitcher is trying to stop me from hitting it. You know, like, I'm not just, I'm not just updates, not on a tee. You know what I mean? Like, he's trying to beat me, I'm trying to beat him. I'm also trying to beat the other eight guys out there. He's like, you know, it's not as easy as hit the ball. And it's not as easy as you know, just you know, like you said, the the enemy gets a vote. That's a real it's a really interesting way to put it and apply to diabetes like this. Well, you must have a list in front of you. You're an engineer. What else did you want to talk about?

Terry O’Rourke 56:42
I have way more way more here than we have time. Don't don't

Unknown Speaker 56:47
don't say that we keep going

Terry O’Rourke 56:48
on. One thing I would like to talk about is is our doctors, okay. I've had a long history with doctors, you see, one, four times a year, I've been doing it for 36 years, I've probably gone through about six doctors. I have never found the doctor, I've never found the one where I think oh, this is the one yeah, this is the one who gets it, who's going to treat me right is going to understand it. I and I went through, you know, some some anger when I when I finally discovered it, how much of a role carbohydrates played in my disease, that when I started limiting my carbohydrates, I got so much better. I was taking less insulin, I was losing weight without effort. My energy was higher, my blood pressure went down. all this good stuff happened. And I thought, Oh my gosh, why did my doctors never even bring this up? And I was angry. Yeah, you've talked about this. And but I've given that up. Anger is that good to hold on to? It's appropriate in the short term, but not chronically. And I realized that all these doctors have a lot on their plate, they have a lot. And now they see so many patients a week and they've got you know, they're there. They got in it. They got in the profession to do good. And they're really that's it spot the goodwill. But this is my recent insight is their agenda does not completely overlap with yours, right? And so many people defer to the doctor's agenda. For instance, their their attitude towards hypoglycemia. I often said they're hyper phobic about hypoglycemia. And the reason they are is because of their legal exposure and their professional exposure and and the professional standards of care as published by organizations, like with the American Diabetes Association. Just you know, the whole thing about the time and range, they decided that 70 to 180 is the time in range. Well, for some of us, that's a joke. It's just like, that's that's weeks week sauce. Why? Why not? I understand. For some people, it's a good idea. But the doctors are so afraid of hypoglycemia, they'd rather have that that high end be up at 180 not thinking that's it's not appropriate in every situation. So the doctors, doctors interest are not completely congruent with yours. And you need to understand that. And then you need to decide with certain things that you take responsibility that your point of view, your perspective, holds as much gravity as the doctors and I wish the doctors would give us a seat at the table instead of just talking about us. But say, hey, patient, what do you think,

Unknown Speaker 59:41
right? What are your goals? Seriously, not

Terry O’Rourke 59:43
just because you lack letters after your name should not dismiss your point of view. And you know, like I've said, you know, my time we're living with diabetes dwarfs, all their professional time with diabetes, by by orders of magnitude, we

Scott Benner 59:59
you You said earlier about those numbers about how people's a onesies are more in the sevens and a large percentage of them. And it struck me when you said that. Hasn't the goal handed down by the American Diabetes Association for a long time been? You know, similar? Yeah, to that number. So what that is,

Terry O’Rourke 1:00:17
it's on ambitious expectations. It really sells the people. It's like, the teachers in school when you're in primary school. Yeah, the teacher you remember the most is probably the one that expected the most out of you that challenge. You said, No, you're not gonna get off that easy, Scott, you're gonna do this, we it

Scott Benner 1:00:35
really makes me just feel like you get what you expect. So if you expect that a seven is good, then you end up with a seven. I mean, that just makes sense to me. I, you know, I think so often, I just got another note the other day from someone who, you know, said they were listening to an older show, and I was talking about goals and your Dexcom alarms. And I said, if you just keep pushing down your high alarm, eventually you'll find a way to stay under everywhere you put it, it just happens. Like once you can stay under 200. Cool, then go to 180. Now Augustana 180, I can stand on 150. It turns out that the way you stay under 150 is the same way you stay under 120 with just a little more insulin. And and and, and she said it really worked. She said I was so. So sure you were wrong about that when I listen. And now I'm doing it and it works. And I wonder if you didn't say to people because pregnancy Jenny says Do you listen when Jenny's on? I do? Yeah,

Terry O’Rourke 1:01:32
I was actually a client of hers back in 2012. That's crazy. So

Scott Benner 1:01:35
Jenny says all the time, how come when someone's pregnant, we can keep their a one see it under six. And I was like, gracias. Why is that not for everybody. And there are plenty of people, a lot of them listening to you and me right now, who have those a onesies are on their way to them are on their way to understanding that they're possible. And then the variability that comes with it. You know, I agree with you, like 70 to 180. I like it when it's like, looking at my time and range how great it is. But you know, then they don't tell you what their ranges, like, yeah, I've been on the planet for 48 years, my time range on earth is 48 years. I haven't always done great things with that time.

Terry O’Rourke 1:02:13
The other brings up the other another topic that I've got on my list is this idea of observing data.

Unknown Speaker 1:02:20
Okay.

Terry O’Rourke 1:02:23
Some people say, you know, I'm just not a numbers person, I don't like to look at the numbers, I don't like to look at statistics about diabetes. And I've observed myself that once you start watching the data, on a subconscious level, you start buying into you start to try to influence it to the better. Mm hmm. So I pull up my diabetes data every day. Every day, there's certain graphs I favor. But I look at it every day. And I often take actions on it and the mere act of observing causes me on some level to buy into improving it. Yeah. And you know, I, when I never took one, statistics class number one in college, in fact, I was late, I didn't get a college degree. I was 46. never took statistics didn't know what the heck of standard deviation was. And I figured it out slowly, through by use by, you know, the CGM write programs in the Dexcom clarity program. And I know I under I have a gut feel for what it is and how it works. And I want to keep it below a certain number.

Scott Benner 1:03:40
When you look at standard deviation, do you look at it for the day for the week for the month? How do you think about it?

Terry O’Rourke 1:03:46
I my favorite one is the 14 day AGP report out of clarity, okay, ambulatory glucose profile. 14 days is sufficient data to be statistically significant, but not so long that it hides all sins. Hmm.

Scott Benner 1:04:03
No, I agree. I like a shorter, a shorter window as well. You just put it perfectly as to why, you know, you can have a great day. And look, you know, it's almost like when you test when you know your blood sugar's gonna be okay. There's that's meaningless. You know, if you know, you had a great day and you look at your standard deviation go, ooh, 23. And then don't look at it for the next month.

Terry O’Rourke 1:04:26
Yeah. And then I've gotten into arguments online with people who know a lot more robust statistics. And they say, well, that's not really a valid that's not a valid proxy for your blood sugar variability because the data is not normally distributed. Okay, that has that has a meaning in statistics I don't quite get but it's not completely random. And so that it the standard deviation is not it's not a purist way of looking at it as a as a pure number kind of thing. But it's it's a, I think it's a reasonable proxy to show how much your glucose is going up and down, the lower the number, you know, the better off you're gonna be.

Scott Benner 1:05:09
Yeah. If the limit limit spikes limit dangerous lows, stay stable as low as you can. That's pretty much it, whatever you want to call those things. Those your goals. Yeah, you know what I mean? And, and people will come up with better ways to measure them. I mean, this variability and standard deviation is far better way of thinking about it than you had 10 years ago, or I had 10 years ago. And 10 years from now someone's gonna come up with something that's even better. And and I've

Terry O’Rourke 1:05:35
had, I've had doctors try to pull that thing on you about, oh, you're a one C is low, you must be having a lot of hypose. And I say what timeout doc? Yeah, think about this. Check out my standard deviation. I have a standard deviation of 20 milligrams per deciliter. I says, lows don't happen to be like falling off a cliff. Right? They're slow. They're gradual. I see it coming. I have I wear a CGM. Yep. Fact I have a I have a diabetes alert dog. He's one of my backups. And it so I finally over time got a few doctors persuaded to this, you know, so when they see my lower a one see they don't just get all worried about it.

Scott Benner 1:06:20
Right? Well, you know what I started building it's funny, you mentioned doctor so many times, um, I, I online asked people in the in the private Facebook group. You know, if you have a great endo or a great nurse practitioner, can you list the practice here? Because I want to make that list available online? like where do you go find doctors who get it? Who won't look at your, you know, your numbers as an example and say, Oh, you've you've been low too much when that's clearly not what's happening, like, where do you find those people. And a lot of them are starting to listen to the podcast, I get a lot of notes from doctors offices or nurse I listen to it's like, it's it's exciting, because eventually we should be able to spread what you're talking about out of to caregivers, and give people better expectations. Like maybe everyone doesn't. Maybe everyone can't take the advice, the way you just put it out there, because they're in the wrong time of their diabetes. But at least if their doctor knows about this information, they can watch them for when they're ready, or move them towards being ready to hear something like that. Instead of just saying, you have a seven and a half. You're doing great. Get out of here your crazy kid, and then that's the end. Yeah, you know, so yes. I'm hopeful about it, that it's gonna

Terry O’Rourke 1:07:36
Yeah, well, I you know, I I remember the Richard Bernstein camp. We deserve normal blood sugars. And saying that I can go up to 180 regularly, that doesn't fly with me. That's not normal. human evolution has decided what's normal on human evolution has determined that blood sugars are tightly controlled. In the non diabetic, tightly controlled, you wake up almost always under 100, you know, usually in the 80s and 90s. And you do have a certain amount of what we call hypoglycemia, even what I would call glucose normals, right?

Scott Benner 1:08:13
People hit not see you, I have to tell you, I think I'd you're starting to say this, I'm sorry to cut you off. You're the first person to say that on the podcast that had a big impact on me that people would type one, the people who don't have type one diabetes, often find their blood sugar around 64 for an extended period of time during the day. Tell me about they're

Terry O’Rourke 1:08:32
there in the early morning hours. Yeah, this this was this this. The reason I fell in love with the ADP report, I read the study on it in 2015, published in the diabetes, therapeutics technology published under their name, and they basically, they took a person they put a CGM on the person, so they could compare diabetes to what they consider normal. So they just basically said, okay, it's only one person, but we consider this person as representative of a glucose normal person, okay. And this person, it had like a 5.7%, under like, 65 each day, each day, but it was in the early morning hours before waking. And you know, I challenged one of my endos with this when I live back in San Francisco, and she confessed to me says, You know, I wore CGM for a while and says, I observed this to myself. She doesn't have diabetes. But my latest doctor said, Well, yeah, that's all well and good, but you have diabetes. You don't have the emergency metabolic backup, the glucose, healthy glucagon and all that. I said, Yeah, I get that but just watch it. No, I want to compare myself to normal people. I don't want to consider my

standard of care as the disease people. Well,

Scott Benner 1:09:54
that response points out what you said earlier is that the doctors goals is for you not to die, right for you to not get so low that you have a seizure and need help or whatever could come from that. And you have tools in place to stop that from happening. So your goal is different. Your goal is Listen, man, if I get to 65, for a couple of minutes, I'm not going to eat a bunch of food and drive my blood sugar back up, I'm gonna try ways to massage it back to where I want it to be, again, because I know 65 for, you know, 15 minutes for half an hour isn't the end of the world. It's not hurting me medically. And, and so I can do that. But as soon as you tell people a 65, or anything under 70, or whatever ends up being being said, is a panic situation than they think, Oh, this is dangerous, better high than low. I'll drive myself back up.

Terry O’Rourke 1:10:44
Well, if they're if their standard deviation is 60 milligrams per deciliter, which is twice what I think it should be. It's, it's more dangerous. Your blood sugar's swinging up and down. And if you get to 65, you could be at 55. In 10 minutes, you could be at 45 and 20 minutes. But if you have if you have a standard deviation of like 20 milligrams per deciliter, you're not likely going to go that low that quickly. Yeah, can happen, but not likely.

Scott Benner 1:11:12
Well, your point is 100%, right, in my opinion, because Arden is about to get her period right now. So she needs more insulin around food. And so she's been spiking more around food. And it's going to stop as soon as she gets her period. This stops. It's fascinating to watch how it happens for her. But so for the last couple of days, her standard deviation has been higher. And while it's higher, she's having more lows that need to be rescued before they come. But the five days prior to that when her standard deviation was in the 20s. She was never getting low. That's it? Yes, yes, she wasn't she's not bouncing is another way of saying right.

Terry O’Rourke 1:11:52
And guess since you don't go low quickly, with a low standard deviation, you then have a much longer opportunity to fix it. Even if you're not paying real close attention.

Scott Benner 1:12:05
You can still pop a little bit and then your mouth and see what happens. Do you do completely low or no carb? Or how do you handle your meals?

Terry O’Rourke 1:12:13
Okay, I got a diagnosis

18 two months, almost almost two years ago of coronary artery disease, okay. And so I was low carb starting in 2012. And I varied from you know, like 3030 grams a day up to 100 grams a day back to 30 grams a day. When I got the diagnosis of the heart disease. I adopted a diet with no grains, zero grains not zero cards but zero grains, no wheat, no flour, no corn. And I you know drop things like potatoes, of course, no bread, all that stuff. Yeah. So it's naturally cut my carbs down. And also the quality of my carbs. No bread is a processed food. noodles are a processed foods. Spaghetti is a processed food. And I understand why people like it. And I used to be that way. But when your life is on the line, and you're staring at the you know, the number one thing that takes down type one diabetics is heart disease, not not the diabetes itself. And I thought, Oh, this must be I'm gonna go, you know, what am I going to do? And I flipped back, right. And I've arrest I had the test that I got diagnosed on something called a coronary artery calcium scan to CT scan, they can actually see the coronary calcium in the coronary arteries. And that calcium is a is a proxy for the total plaque that's in your arteries. And that's what fills up and it ends up rupturing and you get heart attacks and strokes.

Scott Benner 1:13:45
When my my very good friend passed last year, that's that's how he died. He had a massive heart attack.

Unknown Speaker 1:13:51
Yeah, so

Terry O’Rourke 1:13:53
I learned through a lot of reading that the coronary artery disease the calcification progresses at a rapid level like 20% a year and so they said it's very rare for people to arrest it or reverse it. So I had the scan done exactly one year later in my score dropped Wow, not by a lot but by a couple percent it did not increase and it went down a little bit. So I took all the discipline that I learned with diabetes and I said okay, I've got this new game and my life's on the line What am I gonna do

Scott Benner 1:14:27
apply it the bread and pasta is what i

Terry O’Rourke 1:14:30
did i thought you know what, there's no meal that tastes so that tastes as good as a normal blood sugar feels. Yeah, yeah, just doesn't happen and I you can give that you learned how to like this. You weren't born liking potatoes and cereal. You will learn that.

Scott Benner 1:14:47
So how do you how did you say she ate those things in the beginning when you made the switch? What did you move to that helped you be able to maintain until you got to a place where it became everyday Do you?

Terry O’Rourke 1:14:58
Are you talking about the switch or Back in 2012, when I just limited carbs, or Yeah, later, and two grains,

Scott Benner 1:15:05
I think I want to hear about both. But like, what's the process like about you know, cuz taking out grains is very specific, but first limiting your carbs a little bit and then talk about the grains like, well, how did you? I mean, you had did you go cold turkey? Or did you nurse your way through it?

Terry O’Rourke 1:15:17
Here's my participation on the diabetes online community at two diabetes. I, I was a, I didn't participate and just read. I didn't sign up for an account. And I watched for like a year, full year before I signed up to where I would make my first comments. And there was something going on the car wars, or the local cars versus the rest of the world Yeah, of tension that was going on. And I was watching, you know, I wasn't certain. And then I thought, should I do this? And I thought, No, I don't want to give up my bagels. I don't want to give up my bread that you know, there's certain things I like. But then when I got the the adverse diagnosis, it was gastroparesis, by the way. Okay. I thought, do I love those foods so much that I want to die earlier than I want to die? I have to do indigestion and malnutrition when I just retired, and these are my golden years. And I thought, you know what, this is the time. And so then I did it. And I you know, I limited at first i limited to like 100 grams a day, which really isn't that much of a limit. But eventually, because I was having so much success with it. I brought it down to 30 grams a day. And I would do things like Starbucks breakfast sandwich that comes on English muffin. Yeah, I would just eat an open face. So I need half the bread instead of all the bread, right? So it wasn't like I was completely giving things up. And I eventually cut that down to only a half of a half, I suppose. And, and then and then I would go in and I wouldn't eat the bread at all. I just eat the sausage, and then the egg that's on that on that sandwich. And I found it was quite reasonable. Yeah, I didn't really need the bread. And the more reading I did about the agricultural revolution, which happened 10,000 years ago, which sounds like a long time. But in human evolution, it's a heartbeat. It's less than a half of a percent of our history. As you know, hominids and Homo sapiens. We didn't start eating wait until the last half of a percent of the time in our in our evolution. We learned this it's not something that was always deemed to be.

Scott Benner 1:17:41
Well, yeah, sure. I mean, back in the day like it, nobody was nobody was grinding up grinding up wheat and making bread out of it. Like you saying 50,000 years ago, when people were were our bodies were developing and, and getting accustomed to processing things. And it's interesting, isn't it, how we we've, we live longer through intervention. And so that feels like it's easier to not pay as close attention to your health because it feels like there's a pill or something that will help you go through it right?

Terry O’Rourke 1:18:11
Ark archaea are anthropologists, you know, discovering what happened around this agricultural revolution starting 10,000 years ago, and they saw they found skeletons of humans who predated the agricultural revolution. And they found that these these people they had better bones because they could find the bones and they didn't have cavities than their teeth.

Unknown Speaker 1:18:33
Okay, and

Terry O’Rourke 1:18:34
they and they had all their teeth they're there they're the dental arch in their mouth was big enough to house all the teeth that we evolved to have whereas nowadays we have braces and orthodontia and we have a lot I mean, I had horrible cavities as an adult. I've had very little dental work since I since I cut out a lot of the a lot of the grains a lot of the carbs and you know bread and stuff

Scott Benner 1:19:02
are you um Do you eat animal protein? Are you vegetarian?

Terry O’Rourke 1:19:06
Yeah, no, no, no, I I'm I'm an omnivore and I yeah, I I eat beef on a chicken. And it's, it's what my my my hardware evolved to like so it's like I kind of go against that code because it's But Mother Nature knows knows what. What's healthy for me. So

Scott Benner 1:19:26
when you make yourself a steak, what do you put with it? Like how do you sign it up and make a meal for yourself

Terry O’Rourke 1:19:31
on vegetables? Most commonly I could have you know mushrooms or or even saute onions and bell peppers or spice it up with some some hot peppers, right. Cabbage is another another good one. But yeah, so meat meat and vege

Scott Benner 1:19:51
Yeah, but no, no, um, no potato, no rice either. Is that right? All right, no bread, that kind of stuff is gone

Terry O’Rourke 1:19:57
and I don't really miss it. It just That's what's amazing to me.

Scott Benner 1:20:02
Well, I have to say that, you know, I've done low carb things throughout my life, you know, in short bursts. And you know, it's never been a lifestyle. But there's no way to argue that when you get carbs, like those kinds of carbs and sugar out of your system, about three days afterwards, it feels like someone turns your dimmer up a little bit. You just feel differently better, like your body's not working so hard to process food, I'm assuming is

Terry O’Rourke 1:20:33
starches are nothing more than a chain of glucose molecules.

Scott Benner 1:20:38
Yeah, so I'm probably using that point.

Terry O’Rourke 1:20:40
Yeah. As soon as you put bread in your mouth, the enzyme in your mouth called amylase immediately starts cutting those bonds. By the time that bread hits your stomach. It's already sugar, right?

A little sugar. It's a lot of sugar. How

Scott Benner 1:20:54
did the French stay so thin? They eat bread all day long. Seriously?

Unknown Speaker 1:20:59
Yeah, I don't know. I don't culturally, right.

Scott Benner 1:21:02
Yes. You know what I mean, though. Yeah. So I always wonder that they

Terry O’Rourke 1:21:06
do eat a lot of meat and veggies as well. Yeah. Drink red, red wine, which is probably good for you as well.

Scott Benner 1:21:12
Well, I think that whatever works for somebody. And and I don't mean works by whatever makes you comfortable. I mean, works by actually works. Yeah, I mean, I think is great. You know. So whatever is, if you're fueling a healthy lifestyle, however, you're doing it, that's amazing. I know, I have once or twice over the last couple of years, this is interesting that you enjoy the podcast so much, because once or twice over the last couple of years, I've taken it pretty hard from low carb people. I think they feel like when I say I want you to understand how insulin works. And I use the example that my daughter doesn't have diet restrictions, they feel like that means I'm pushing carbs. And I don't I don't feel that way. Like I Arden had a big house salad for dinner last night, you know, and it probably had 25 carbs in it because it had like she put some barbecue sauce on it or something like that. You know, like there were carbs in it, but it was beans and corn, lettuce. What else did I put in the shed a little bit of cheese not a lot. You know, and then that's that she doesn't eat very much. Now this morning, she got up and she ate french toast. And she probably won't do that again for two weeks. Like she you know, she kind of bounces around her eating. So all the stuff I say on the podcast, I believe I'm saying understand how to use insulin, then figure out what you want to eat and then use the insulin

Unknown Speaker 1:22:31
I

Terry O’Rourke 1:22:32
know you've mentioned about disordered eating among especially young young woman is definitely a thing. And you need to you don't want to promote that. So I think you've taken a good middle road. It's not exactly what I would choose, or I do choose for myself. But I understand that.

Scott Benner 1:22:50
And I'm also talking to everybody, not just you. You don't mean so I'm trying to be trying to be what I consider to be.

Terry O’Rourke 1:22:57
Yeah, well, My take is I interact well with some people who are in the ever heard the group called mastering diabetes.

Scott Benner 1:23:07
I haven't but

Terry O’Rourke 1:23:09
they they eat high carb, they very low fat and high carb and their carbs are mostly fruits and vegetables. Okay, we're talking like four or five 600 grams of carbs a day. And these are people, people with type one diabetes that are controlling Well, well, I was initially very incredulous that this could be done. But now I realized that it is it is doable. And that the key is not combining high carbs with high fats, which is what the standard American diet is. Okay, so if you're gonna eat the high carbs, just keep the fats to a minimum. They can't do both. And then the other thing is, is don't eat processed food. The extent you can avoid processed food, you're better off right? If it has an ingredient list and especially if you don't understand what all those ingredients are. You probably shouldn't be eating it. Yeah,

Scott Benner 1:23:58
I I do my best to give my family basic foods. You know what I mean? Like, like, just, I don't like looking at something and thinking I don't know how this got to this state. You know, is this the

Terry O’Rourke 1:24:11
jerk jerk diet? Just eat real foods? Yeah. Is that

Scott Benner 1:24:14
what they call it? That's a that makes sense. To me. I've actually, um, recently. It's been a couple weeks now, but I've been doing basically I guess, some people call it intermittent fasting or 816. There's our years that Yeah, eight hours a day I'm eating and 16 hours a day. I'm not and I find that that's been really valuable. I definitely think I'd like to hold on to that concept.

Terry O’Rourke 1:24:36
You feel more energy? What do you leave out the early early? Early breakfast

Scott Benner 1:24:42
I go from Yeah, I go from noon to eight and I very infrequently find myself eating all the way to eat anyway.

Terry O’Rourke 1:24:48
Yeah, yeah, I eat from I eat from like a 10 to six

Scott Benner 1:24:52
7am to 6pm. It's funny you said that because just as I said noon to eight I thought but 10 to six would probably oop, sorry. I lost My audio for a second you can still hear me, but

Unknown Speaker 1:25:03
I can't hear you.

Unknown Speaker 1:25:06
And

Unknown Speaker 1:25:10
give me one second.

Scott Benner 1:25:12
Sorry about that. Sorry, I you could actually hear me I couldn't hear myself or you. Just as you said that. I thought maybe 10 to six would be better. Even 11 like, why am I not messing with this a little bit? Like if I'm not finding myself eating all the way to eight o'clock because I do get hungry by noon, although not so hungry that I'm ravenous just like I'm ready.

Terry O’Rourke 1:25:34
I you know, it's like 930 coming up on 930 now and I won't eat for maybe another hour, right? I I do not. I'm not hungry. I've had my coffee, my coffee and cream in it. So technically, maybe I broke my fast but I don't have I think your body likes taking a break from food. Pudding something some feeding your gut every three hours to me is not healthy.

Scott Benner 1:26:00
But gives it a lot to do. And sometimes, you know, and if you have like you said if you have to eat you eat but you're making a good point you haven't eaten you've been up for a while your blood sugar's you mind, tell me what it is.

Terry O’Rourke 1:26:11
I'm 98

Scott Benner 1:26:13
right. And you

Terry O’Rourke 1:26:16
know, I have I have this little dance that goes on I you know the the the dawn phenomena slash feet on the floor syndrome. Yeah. And I always have to put my foot on I use loop and I just upgraded to the latest one. And they have something called overrides. And so I step on, I do a 200% override. We probably wouldn't like hearing that. But that's what I do. And I step on that for an hour and that that tamped it down. Or even better. I have a mini trampoline rebounder. I jump on that for 1520 minutes, and that'll knock it down right away. No kidding. it well. Not right away. But 1520 minutes. Yeah, it'll take it down. And actually, that's probably a better solution than throwing insulin add up because insulin, it from my understanding creates insulin resistance.

Unknown Speaker 1:27:10
You might try using insulin is that you'll need more insulin

Terry O’Rourke 1:27:14
in the long run.

Scott Benner 1:27:16
Yeah. But doing some exercise walking around the block. You make yourself more sensitive to insulin you do the glucose goes down and you become more sensitive, and it's a win win deal. Arden's been working out in the afternoon since she's been sheltered in place. And I you have to plan for it because she'll drop. Yes, she'll want to drop like 70 points. And so you there's ways I can I restrict her bazel prior to her eating. And that usually is really helpful. Although I got to see something incredibly interesting the other day, where we she just announced she was going to work out. And I gave her like half of this very dense protein bars like nuts and I don't know exactly all what was in it, but it was very dense. I said eat this before your workout. It was only a couple of little bites. And it was crazy to see how long it sat in our system overwhelmed the workout. There was no glitch is really interesting. There was

Terry O’Rourke 1:28:13
a good thing that I'd studied or

Scott Benner 1:28:16
Yeah, watch, like, I couldn't do the the Temp Basal thing leading up to the workout because she just decided to do it out of nowhere. So I gave her I think it was like 10 carbs. And I knew it was going to sit there somewhere for hours. And it went in there. She started to go down about the time she would have the distance between starting the workout. And then it just caught and it laid there for hours. I was like, Wow, that was really awesome. So I almost Pre-Bolus with food. If that makes any sense.

Unknown Speaker 1:28:43
Yeah.

Scott Benner 1:28:44
So those are really something uh, how do you just said you upgraded to the latest version of looper using the auto bolus yet or no?

Terry O’Rourke 1:28:53
No, it's not Not Audible. And I don't I don't even know if they feature. I don't think they it's still a hybrid system.

Scott Benner 1:29:01
There's a branch of it with auto balls because oh,

Terry O’Rourke 1:29:03
branch Oh, yeah. I haven't done any experimental branches. I'm just I just finally did my upgrade myself. Okay, all these years to figure out how to do this myself. And I was quite proud that I was able to do that. I had help. I had a mentor that that got me started.

Scott Benner 1:29:19
Yeah, a lot of nice people helped me when I get confused. So yeah. With the the app

Terry O’Rourke 1:29:25
or you're not using it anymore.

Scott Benner 1:29:27
No, she is. Yes, she is using it. Right. Okay, yeah, I am.

Terry O’Rourke 1:29:32
What is what does she think of it?

Scott Benner 1:29:35
She hates the Reilly link. Just the extra piece of hardware. She really hates it. It burdens are in a way that I have not gone away. Like I thought she'd get used to it. But every time I see her get up and she has to pick it up, she looks a little bit like she'd like to throw it across the room too. And so I'm super excited for horizon because horizons is going to have the algorithm it's going to be printed right on the pod right in the circuit board. So you won't need contact with your phone for your role. That'd

Terry O’Rourke 1:30:05
be part of tide pool loop.

Scott Benner 1:30:08
That's what I'm talking about is Omni pod horizon, which will be their closed loop system. Okay. It should be coming out. I think I think Coronavirus pushes

Terry O’Rourke 1:30:17
their algorithm and everything. Okay,

Scott Benner 1:30:20
so the algorithm that is running on your phone, and then has to talk through that link and get to your pump, that algorithm is going to run right on the on the on the pot, it's going to be built or built right into the circuit board. Okay.

Terry O’Rourke 1:30:33
So that'll be, that'll be our answer to that.

Scott Benner 1:30:36
Yes. Yeah. Because Because it's, you know, there's times where, you know, like, things are going along. Great. And then you look up and you're like, she's going up for, I don't understand why she's going off. And then you go look in the loops, yellow, and it's been this, you know, and it's been disconnected for 20 minutes, or then it's all sudden, it's red, and she hasn't been anywhere near it. And she needed an adjustment. And it's not capable of doing it because she's out of Yes, she's not looping because the Riley likes gone. Yes.

Terry O’Rourke 1:31:01
I think the automated insulin dosing is his breakthrough technology. Very glad. And the 36 years I live with diabetes, it's one of the top five things. Yeah, if not the top thing, because it's titled us every five minutes, it does the analysis, and dispassionately makes the change. Yeah,

Scott Benner 1:31:23
well, I can tell you that she's using the auto loop. And if I miss on her food, somehow, usually it's a Pre-Bolus. Miss. If I miss, as soon as she starts heading up, that thing just starts going. And it's bolusing and bolusing. And posting. So if you don't notice, it's only does I forget the exact breakdown, but it gives 40% of the recommended dose, and then keeps breaking down from there. So I think it's less and less as it goes up for safety reasons. But I've I've never missed on a bolus. And since she's had the auto balls, and it not stopped her by 200, at least. So it's not great. But if you screw up, it's like, oh, and it starts throwing the brakes on for you. You don't Yes, very interesting. Yeah, incredible. Really,

Terry O’Rourke 1:32:13
I just I'm, I'm so happy I was able to get on the automated system. When I did. And I, I would never, I would never give it up. It's a little bit amusing to me how timid the commercial operations have to be with their with their algorithm. With regards to the lows, of course, that's what they're worried about. Yeah. So they, the first is they don't allow you to set your target, you know, like below 120, for instance, or below 100? Well, my target is 83. Yeah, that's what I correct. And you're

Scott Benner 1:32:46
also in a good situation to to make that decision because of your low carb because you don't use much insulin to begin with, right. So if you keep a tighter tolerance at a lower number, you have much less likelihood of dropping than somebody who like aren't in this situation today who decided to have you know, French toast for breakfast. She had three slices of it. It was me know fry your mind, but it was 66 grams of bread, I think. Yeah. So it's that massive amount of insulin so that she can eat this french toast? And if we tried to stay at 83 during this moment, you know the slightest Oh, yeah, right. So So you've put yourself in a better position to keep yourself stable. Yeah, so

Terry O’Rourke 1:33:23
I this is what the Do It Yourself movement has really appealed to me that it allows people like me to be in charge, I don't have to go hand in hand to the to the device manufacturer to my doctor saying Oh, pretty please let me aim for normal blood sugars. It's just like, I got this, how you doing this.

Scott Benner 1:33:40
And it's important, because now is listen now is your it's your life now like to say that I think in a couple of years, these systems will let you pick the number I think that's true. But that's not helping you right now. You know, and

Terry O’Rourke 1:33:55
the Do It Yourself movement. They're iterating like mad IQ, they're changing. They're improving the code all that they don't have to go to the FDA, they don't have to go through all this laborious process and jump through a lot of hoops. They're able to make improvements and I in fact, I want to get this in before you enter here, please. It's the parents of children with diabetes that were the one of the backbones of this movement. It was their love for their children that was so strong they thought we should be able to do this and they did that we are not waiting movement was born and is still being felt its effects being felt today.

Scott Benner 1:34:30
Well, I was gonna say the same thing. And but I was gonna say an add to that is I hope that what we're not waiting did for CGM adoption and the FDA being you know, cool about things getting happening faster than they used to. I hope that same kind of wave of enthusiasm helps them look back at this loop data and say, maybe we got to let these companies fix these algorithms when they find a glitch. Remember when they when they find not a glitch, but when they decide, hey, we could be more strong here or this could do a better job. Don't make them put it back through a two year process again to get the change. Like I don't want to be using 2020 technology in 2022. Like, like, yes, like, you know, let's figure out a way to get it quicker. I think

Terry O’Rourke 1:35:20
the FDA has evolved, approved, and they have sped things up, you know, allowing the the CGM to be used in the hospital. I mean, that's a big deal. COVID-19 to do that. I mean, I could have told them that five years ago, they didn't want to listen to me, because I didn't have any letters after my name.

Scott Benner 1:35:38
Yeah, yeah. Now all of a sudden, well, you know what it is to you get into a pressure pressure situation, then all the sudden, the safety stuff drifts away a little more, because it's more imperative right now. Like we'll take a bigger risk, and so and right, not that using a CGM in a hospital is a risk. That's just common sense. But you know,

Terry O’Rourke 1:35:58
but in the past, people like me would go in the hospital, and they didn't want you to have that they didn't they want you to take it off.

Scott Benner 1:36:03
Yeah. That's because the person being charged your insulin, I'm telling you, that's because the person talking to you at that moment is thinking six years before, like, their thinking is coming from another time. And as technology moves forward, you need people to move with it. People who understand it have to be they have to be right there in the moment, and be able to say this is current technology. This is how it works. This is how we can implement it not seven years ago, when I was in school, these things didn't exist. So you know, Terry, take your CGM off while you're in the hospital, that that's just silly, you know,

Terry O’Rourke 1:36:37
oh, and I just think it's great that you're getting reports back from from clinicians to saying that they're listening to this, these patient discussions, because it shows things are changing. And there are people out there who are enlightened, and they're going to be part of

Scott Benner 1:36:52
changing things over time. I swear to you, I probably got a dozen emails that say, I went in, my doctor looked at all of my stuff looked up at me and said, Hey, do you listen to that Juicebox Podcast? Because your data looks like? It makes me so happy, you know? Not because the podcast is doing well. But because because success looks like something that people can recognize. You know, that's excellent. That's really exciting. Well, Terry, I enjoyed this very much. I appreciate you coming back on you were so popular, I had to have you back. So I don't think you're at let me leave you with this. I don't think you're as much on the fringe as you think you are. I think that you're on the fringe of people who speak up online. But that's not everybody. You know, what I mean? Like people online, are, are a certain segment, a smaller percentage of the total of people obviously know this of people have type one diabetes, I think most people who don't find themselves on Facebook, or in a, you know, in a in a private group somewhere or even listening to a podcast, I think they think about things sort of down the middle, sort of in a in a moderate, reasonable way. They're not, they're not offended. You know, if you say a lower a one sees probably better, you know, or whatever else comes with that. So maybe you feel like, you don't belong with the people who are speaking up all the time. And that's probably very true. So I think that makes your voice even more valuable. But I don't think that I think that if you reached everybody, you'd find you're more in the norm than you believe you are.

Terry O’Rourke 1:38:29
So interesting thought. Ponder that one. But it turns out I appreciate I appreciate you sharing your platform. These kinds of things always interested me. Because I know that I'm talking to more people like me, but I'm hoping to connect with the person who's right on the edge of me wanting to make a change. And then hearing something in what I said or what you said in our conversation that tipped them over to say, Okay, I'm gonna do this. It's exciting, because that's what it is. It's willful, willful motivation that makes it happen. Well, thank

Scott Benner 1:39:01
you for providing it today. You definitely did. I really appreciate your time.

Terry O’Rourke 1:39:06
And I'm sure I've overstayed my time here. So

Scott Benner 1:39:08
no, no, I've enjoyed editing. No, no, this is all going up it please go three hours if I have to. I just have to. I just gotta go I've I promised my wife I go girl, it's it's time for my tribute to the family. I have to go out and bring food.

Terry O’Rourke 1:39:23
Yeah, that's important.

Scott Benner 1:39:26
Well, I want to take a moment of course the thank Terry for adding his voice to the community of people living with Type One Diabetes. It's absolutely an invaluable voice and we were lucky to hear it not just once, but twice on the podcast. Seriously, go check him out on episode 53. If you haven't heard it, Terry's a he's a resource and a damn nice fellow. Thanks so much to dex comment on the pod for sponsoring the Juicebox Podcast. Let's go over it again because they paid for this and they deserve for you to hear it. dexcom.com forward slash juice bye My Omni pod.com forward slash juice box, get yourself a dexcom g six continuous glucose monitor and an omni pod tubeless insulin pump with those links. You know what I haven't done this in a while thank you to the sponsors for bringing us conversations like this with Terry. I know it seems like oh, no, Scott, you have a podcast that's popular. So you sell ads on it? Well, yeah. But I also have a life. And if I didn't make, you know, a couple dollars with this podcast, I wouldn't be making the podcast and you wouldn't have heard from Terry and blah, blah, blah. So thank you on the pod Dexcom Contour Next One blood glucose meter and touched by type one. Those are all the sponsors that are currently active with the podcast, even past sponsors deserve a shout out, they're not going to get one because they didn't pay for it. But you know what I'm saying they deserve it. I'm just kidding. There have been a lot of great sponsors. In the past, I'm sure there'll be more in the future. But the real staples for the show on the pod Dexcom touched by type one. And more recently, the Contour Next One blood glucose meter who I'm building a really lovely relationship with. These people are helping you to get the stories like Terry or, you know, when john Welsh comes on and talks about standard deviation for an hour and a half, you know, there's, you have to build a place for that to exist. And it takes time and a lot of effort. And I'm able to put that time into it because of the sponsor. So if you need these devices, please support them through the show, use the links in the show notes would be a big deal for me. And it'll help the podcast continue to grow along with your sharing of the show, which I can never say thank you enough for this month. May excuse me, it's June, this month, June. Look at me, I'm only a month behind on what month it is. As I put this episode up this month, June is about to become the most listened to month in the history of the podcast has a real chance for that. I'm looking at the numbers right now we are really, really close. five more days.

I think we're gonna make it. I think we're gonna crack a real milestone in June. And the podcast itself is about to hit a milestone in about a month or so. So anyway, I'm rambling. But that's because you guys are sharing the show. It's because you're going back and listening to all of the content. It's all of those reasons. And I appreciate it. What else anything? This is probably the longest episode ever the podcast. I just watched it tick past an hour and 42 minutes. Wow. I hope you liked it. I really enjoyed it. I think Terry's terrific at this point. Now you've got to be wondering, I've been listening for an hour and 43 minutes. Scott's clearly not saying anything anymore. Why don't I just shut this off? Do I have some sort of a weird compulsion to complete everything no matter what. And if you do, you should probably consult a psychiatrist over that. Because really shut it off. Why are you listening? There's nothing happening. You're afraid you're gonna miss something? Ah. What are you afraid you're gonna miss? You think I'm suddenly gonna restart the episode you can look on your account or It's almost over. You know, nothing else is coming. But you're still listening. I'm disappointed in you to be perfectly honest with you. If you're still listening at this point. Shut it off. Go to another episode. Go outside. Look up with the sun let it hit your face.

Unknown Speaker 1:43:42
Are you still here?

Scott Benner 1:43:48
All right, I'm gonna click the button and stop it. Let's do a countdown to see if you last through the countdown. I promise you that at the end of this countdown. I'm stopping this episode. Will you stop it before the countdown is over. You should by the way. 10 9876543

Unknown Speaker 1:44:17
a two

Unknown Speaker 1:44:20
and one

Terry’s first appearance on the show - March 2016

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#348 Navigating Bureaucracies with Type 1

Melissa is a teacher and a T1 mom

Melissa is a teacher and a T1 mom whose daughter was heading to school for the first time with type 1 diabetes. She was looking for someone to talk through what to expect and was kind enough to allow that conversation to be recorded.

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

Scott Benner 0:00
Hello, everybody, and welcome to Episode 348 of the Juicebox Podcast. Today's show is sponsored by touched by type one. And the Contour Next One blood glucose meter. I'd like you to go to Contour Next one.com Check it out, really look into what this little meter does. I love it. Arden's been using it forever. It's fantastic Contour Next one.com, you may be eligible for a free meter, you'll find out there. And of course touched by type one, the greatest organization in the world, my opinion, touched by type one.org go see what they're doing for people living with Type One Diabetes. Okay, this episode's gonna take a tiny bit of explaining. It was recorded in August of 2019, with the intention of putting it right out for the beginning of the school year. And then that didn't work out right away. I wanted it out because it's really good. But I couldn't make the timing work. Then I thought, oh, I'll just sit on it. Like, I guess my idea was to put it out like midway through the school year. And then people could have some time to, you know, ruminate over the ideas before they went back to school. And then the coronavirus happened. And I sat on it again, because I thought Are people going back to school, I don't even know. And now I wish I didn't do any of that. Because as I listened back to edit this, it's so much more about advocating for yourself than it is about school. In the middle of the episode, we go off of school for a minute and talk about looping. And when we do that, you're going to hear my initial thoughts about looping, which are of course, now almost a year old. I think you should find the other looping episodes. If you find that part interesting. Nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please always consult a physician before making any changes to your health care plan. or becoming bold with insulin. I'm excited because I don't really remember why we're doing this. And I love those.

Melissa 2:02
Why originally wrote in about how the school I'm a teacher, myself, and how the schools vary in the level of care that across, you know, even the county where I live and across the nation, I'm sure across the state. So I just think it's really interesting how there's like a streamline way of how they handle diabetes in school.

Scott Benner 2:25
Cool. Listen, you've just done the entire setup for the show. Thank you.

Unknown Speaker 2:29
Yay, you're welcome.

Melissa 2:32
My name is Melissa cat. I have a seven year old type one who was diagnosed when she was four. We luckily caught it before it became too extreme, I guess you could say we actually would never were admitted to the hospital. We were just given a syringe and a vial of insulin and taught you know, a binder of stuff five hours and sent on our way. So we learned a lot. I learned a lot on my own. And here we are two and a half years later doing you know pretty well, I would say it's amazing. Yeah.

Scott Benner 3:13
Let me orient my brain. So tell me, tell me one more time your daughter was seven.

Melissa 3:18
Right? She is 774. Yeah, at the time

Scott Benner 3:22
for seven, three years. And her name is

Unknown Speaker 3:25
Chloe. Chloe. All right.

Scott Benner 3:28
Interesting that they, too, they never admitted you at all?

Unknown Speaker 3:33
No.

Scott Benner 3:34
Tell me about the process of the teaching? Did they literally send you home right away? Or did they sit you in a room for a while.

Melissa 3:40
They sat in a room for a while. So we went to the pediatrician for what I thought was a UTI. My mom suggested that I test for diabetes, because she kind of did a little internet research and some of her symptoms led to that. Thank god she mentioned that because I don't think I would have ever asked the pediatrician I course better or had her drink an entire juice box before going in so that she would go to the bathroom and God in there, tested her blood sugar. And she was forced 68 the pediatrician at the time kind of just looked at me got up and said I need to call Children's Hospital. We're close to Los Angeles. So he said I need to call Children's Hospital. I'll be right back. He laughed. I kind of sat there for a few minutes not really understanding what was going on. I ended up getting up and leaving. I took both my girls and we left. We went about her day he called me and said where are you? And I said I'm going to the mall. And he said well, you need to go get blood work done. So we stopped at a hospital got some blood work done. I just didn't understand the severity of what was going on at that point and no one was really saying anything. So um, he was trying to get us in to children's hospital because he had no ketones. And they weren't super worried about her. They It was a Monday. They couldn't see us until Thursday morning of that week. So Thursday morning at 5am. We drove in, sat in a small room for about five hours with a diabetes educator who herself was also type one. And, and she literally went through a binder of information. And like, I think the first thing she did, though, was really hand me a syringe in a vial of insulin and said, Here you go, you got to do this. And I was like, What?

Scott Benner 5:32
So now I have to ask the question that I'm imagining everyone listening is thinking, you're in the the office. The blood sugar comes back, the doctor doesn't communicate well says I have to call Children's Hospital leaves the room, and you literally pick up and walk out at some point before he comes back.

Melissa 5:53
Yeah, I just I didn't I, I, I he didn't say I needed to hang out. I I honestly did not understand what was going on. You know what I mean? I mean, he said he had a called Children's Hospital. But I didn't. I don't know. I guess it just didn't register to me. Like I said, the severity of it. I mean, she seemed, I don't know, I just really didn't get it. And the ironic part is, I had a friend from high school who I knew her daughter was type one. And I know she had gone through a lot just with finding out of that. And I, I just I don't know, I guess it just didn't resonate. I think maybe I was in denial. I don't know, I really don't know. I don't

Scott Benner 6:29
know what I was thinking. I can't I can't decide. Obviously, I wasn't there. But I can't decide if you just like disconnected his statement from you. Like you're like, oh, that he's got phone calls to make. We're done. I gotta go. Or Yeah. Or if you were just like, Okay, this is terrible. And let's get out of here. Like, I

Melissa 6:47
know, I don't, I feel like I don't think if I don't feel like in my heart, I felt like it was really a terrible thing. I just thought, Oh, she has type one diabetes, and now she's, you know, going to need eat differently, or I just didn't. I didn't understand it. Um, and yeah, I don't know. I think

if I was scared, I would have stayed. Yeah.

Scott Benner 7:09
No, I'm not trying to paint you as like, you're like, yeah, better things to do than this? No, I'm not saying that. It's just amazing that, that he wasn't able to,

Melissa 7:20
I don't know to impart upon you what was happening Exactly. Like, do you think it took him by surprise? Yes, he was actually my pediatrician too. And to be honest, when the number came up on the meter at the office, I could tell by his face that he was you know, disappointed or Yeah, concerned. And I had my oldest daughter Avery in there who is definitely was was really worried and kind of freaking out herself about even just the finger stick, you know, and, and so I just think it was an overwhelming thing. And he had said to me, it's presenting itself as type one. Diabetes, he didn't actually say, this is type one diabetes. Um, so I just kind of felt like there would have been a I don't know, I don't know what I

Scott Benner 8:06
guess I've recorded about 300 of these. And you have finally said something completely different than anyone else has ever said. I usually people stories are fairly keto, simple. Yeah,

Melissa 8:16
I get it. I get it. And you know what, and that's what I kind of feel like, I am, yeah, I had that. I left I got blood work. You know, the Children's Hospital wouldn't, you know, couldn't see us. I have a neighbor, ironically, who also has a type one daughter who was a little bit older. I rarely see her because she's a nurse. She works at night and sleeps during the day. And so I happened to run into her The next morning, and I said, Hey, can I talk to you? And she said, yeah. And I said, well, the doctor said that, you know, Chloe is presenting with type one. And she said, What do you mean? And she's like, Can I come in and have, you know, a cup of coffee could be talk and from that, that's when I think it all kind of hit me. You know, she just because she cried immediately and said, I'm so sorry, you're going through this and you're like, why? Yeah, that's good. Totally. And she just said, you know, things can go from bad to worse really quickly. And so I mean, the the pediatrician and said, you know, to feed her low carb stuff to not give her anything that you know, so I was giving her low carb meals. I mean, he had given me some pieces of advice. He was really frustrated with children's. He didn't understand why they weren't weren't able to see us, but I don't think they felt like she was as high of a risk. I don't know. I don't really know what they're,

Scott Benner 9:35
and I realized that's a busy part of the country, but in my mind, hey, we're diagnosing someone with Type One Diabetes, they go right to some sort of informative care situation Right, right. Or even presenting with any you know, in the moment health risks, but not to say that a for something blood sugar is not a health risk, obviously, but right. That's fascinating. What she honeymooning or was it Yes, she was so she'd bounce. Yeah. In the beginning,

Unknown Speaker 10:01
yeah, you know, we got there they tested her at Children's Hospital they tested her she was at and they looked at me and they said, Did you give her insulin? And I was like, No I don't even have insulin. No I didn't and then so then that at that moment, I thought, Is this a dream? Like did they diagnose something that isn't real you know and so unfortunately they said no, she does have it you know and and then from that moment on she they gave us pretty I mean, I feel like they should have told me I needed to bring sugar you know with me to the hospital because I live about I mean, about an hour from children's hospital but you know, you know, LA traffic Yeah, could be three hours so i i really all I was thinking was they're gonna put me in a car for three hours and not let me have any sort of sugar to like, you know, help her because she crashed the first insulin dose she crashed pretty hard she didn't really need in fact we didn't even end up needing long acting for you know, a few months so well that's a tough time I mean, the honeymoon time is is crazy. There's a lot here to unpack and and I know this is what we're really good at. I know so I just think it's I get your your cuz you have hindsight frustration right now you know more about diabetes. So you right, look back on that moment and think like, how is this possible? This is what you said to me or send right home like that's, you know, count your carbs put in your insulin. Right? No, possibly it might not be necessary all the time. And I don't even know how you would, how you would communicate that if that was the case. Like that's why honeymooning is such a crazy, you know, like time, you know, just to need insulin so badly one day, and four hours later at the next meal not needed is is is maddening. It's very much as it is. And I remember reading somewhere that someone said that it's almost better when they're not honeymooning. So at least you know what they need, you know, like, you kind of can guess what they need. You're not, you know, though,

Scott Benner 12:06
yeah, there's a lot more consistency that comes when the pancreas just gives up. Yep, yeah. And stops and stops making random insulin. Okay, so, so, so she's not a school aged kid yet at that point? Not yet. Right? Nope. And so how long between diagnosis and kindergarten?

Melissa 12:23
Luckily, the summer she was diagnosed in February, she started kindergarten in August of that same year, so I have this summer to really get my act together.

Scott Benner 12:33
Did you and how much of your act Did you get together in that time? Like what was your What was your like? Like, I guess I should ask real quickly. Are you using MDI still

Melissa 12:42
know you know, we're looping. We've been looping since May. But I requested a CGM. With the after the first meeting at Children's Hospital, we had a dex calm within a month of being diagnosed. Gotcha. Luckily, so that was amazing. I actually, thank God for that. And then we were MDI for about six months after that, and then we got the Animus pump before she started Kindle. That was my goal was to get her on a pump, at least for kindergarten. And then of course, months later, we find out animus is no longer so we are now using the Omni pod.

Scott Benner 13:19
Gotcha. It's funny, I had the same exact feeling like Arden was diagnosed when she was two. But in the run up to kindergarten, I thought I can't send her to school with needles. Well, I don't know why I thought that at the time. It's just how it struck me. I was like, I'm not letting some like random nurse like poke my kid with a needle. Totally. Yeah. And it's funny. Now I look back. I know those people because they live in my town. And they, you know, it's, I probably would have been fine. I'm sure it would have been fine. Yeah. Yeah. But in the moment, I just thought, well, this is not okay. Like, I just, I don't want her to have to let someone else give her a shot. And, and so we we went to the Omni pod. You know, when Arden was like for getting like, ready for when she was five and going off to school. But um, so she gets to kindergarten, your daughter gets to kindergarten, right? And is the is the integration as seamless as you were hoping.

Melissa 14:08
Um, you know what, I think that was a little I was a little naive in that part too. I myself actually teach kindergarten. And, and I we have a really great school. I didn't initially have a 504 I just kind of went in thinking like, oh, everyone's going to take really good care of her and they've got a plan that this she's not the first type one and get an amazing kindergarten teacher who followed her on jacks. I did request that the health tech follow her also i think that you know, I am in the middle of teaching, I can't stop and like say, hey, she's dropping fast, you need to do something. So, um, it was seamless until about January, everything seemed to be working just fine. And then they just I might our health texts, we don't have nurses at our site. We actually have a One nurse for about 4500 students in the district where my kids go to school, and she oversees the health tax. And the health check at our site is amazing, is very great at communicating and very great listening to what I want to do and what I think we should do with her. Um, but you know, the nurse always wants to make a call. And it's just it.

Scott Benner 15:30
For those of you who are wondering why I have recently switched from Skype to zoom to record my podcasts, this is one of those reasons. Anyway, good time for the Contour Next one.com conversation. Contour. Next One blood glucose meter, huh, Wait, are you here. First of all, the web address contour co NTOUR. Any XT, one, O and e Contour Next one.com. When you get there, what you're going to see is a lighthouse. It's got some lights coming out of it, some are green, some are red, or some are yellow. That's a little bit of a sly send up for one of the systems within the meter to help you know where your blood sugar's falling visually, you know, for in the middle of the night where red might make more sense to you, or green may make you feel comfortable. If you can't really wrap your head around the numbers in the moment. Anyway, that's a tiny part of this meter. biggest part of this meter. It's crazy accurate. That's why I love it the most. If you took away everything else that it was, and it was this accurate, I'd still be down like you could make this accuracy in a shoe. We pretend there was a shoe that was a meter but it was as accurate as the Contour. Next One, I'd carry the shoe around, just use the meter. Luckily, you don't have to do that, of course, because the Contour Next One is small, handheld, beautiful, bright light, nice, easy to read display. And test trips that actually you can go back twice, you know, if you have to to get blood, if you missed the first time don't get enough, you don't waste the test trip. Second Chance, saves a lot of money on test trips. Anyway, I love this thing, it's actually got an app with it that works for the we got that iPhone or the Android. If you guys are interested in seeing your numbers from your blood glucose meter like that, it can be really helpful. But all this is explained at Contour Next one.com you can also see the meter there, it's ardens meters been using it for quite some time now. Anyway, give them a check. Contour Next one.com. While you're on the internet, getting yourself a state of the art blood glucose meter, please check out touched by type one.org beautiful organization, I'm gonna do it right now touched by it'd be nice if I could type touched by type one.org beautiful mission to elevate awareness of Type One Diabetes to raise funds to find a cure and to inspire those with diabetes to thrive, that ought to be enough for you to check out more. They have amazing programs, awareness, annual conferences, they do this beautiful bowling program, they have a dance program called dancing for diabetes, which is just wonderful, they send these boxes out to people who have been newly diagnosed, check that out. It's really a terrific word. Really, really, really, I can't say really enough because I mean, every really I say so I should just say it for the rest of the podcast. But I won't touch by type one.org there are links in your show notes. And at Juicebox podcast.com. We're touched by type one. And of course the Contour Next One blood glucose meter. Okay. But also, I want to tell you here, this isn't an ad though. So let me find what I want to tell you. And then before the podcast gets going again, and then I'll kill the music, and make talky with you and tell you ready. So up until this point, we're just learning about Melissa and her daughter story. But soon we're going to talk about really detailed stuff about advocating for yourself in school, then we trend away for a little while and talk about loop. And then we come back and kind of double down on the school stuff. I actually like the second part of the school conversation, because it really feels like it catches a rhythm. And I mean, the whole thing is great. Don't get me wrong. What I'm trying to say is that in the middle, when we stopped to talk about loop, you're going to be hearing my reactions from a year ago. And they're not the same now. So if you're interested in more, go to Juicebox podcast.com. Scroll down to where it says algorithm pumping and you can use an arrow to move around there to see all the episodes that we've done about looping at this point. We me, I guess in the people I've had on that sounds strange but let's get back to it right now. We get Melissa back on Skype and keep going. Did that dog sit on your phone or something? What happened?

Melissa 19:44
So sorry, no, it was me getting another call and I tried to like cancel it but it didn't work. So it couldn't be my But anyways, so sorry.

Scott Benner 19:55
No, no, don't be sorry. So you were saying that the nurse was good. Was she overreacting like, like wanting to do too much in the moment? Or

Melissa 20:04
I just think that, you know, my approach to type one was kind of a lot of what you, you know, like, I didn't want to give her 15 cards, if she's, you know, just gradually going down, you know, I, and I didn't want to always give her as much insulin as the pump was recommending if I knew he was dropping, you know, and there were just certain things, she would question my decision, because I think she was very black and white, where it says you need to do 1.1 unit, I want to do 1.1 units, but I was like, well, but she needs a little bit more, or she needs a little bit less. Yeah.

Scott Benner 20:36
And so she's following the orders. The again, it's right. It's interesting, isn't it? Like you said, 15 carbs a second ago, like, Doctor says, Hey, if you get low 15 carbs, 15 minutes, right, you know, check again, which was really spectacularly good advice. A long time ago for people to know this technology. Because you know, what, if I'm what if I am on my way to passing out I guess the measure was 15 carbs might be enough to save your life if your blood sugar is falling really far. And check again to really give it time to like work. But you can see so much more now with your decks calm, and you can make more fine decisions with your pump. And it's a different world. But the the orders still get written like that from the doctors. And then I can see the nurse at school thinking, look, this becomes a legal issue. At some point, like the doctor wrote this, I'm supposed to do what the doctor said, right? And then you're stepping in and being like, no, use more, use less don't do right. And that makes them nervous. So how did you get her? Or did you not get that? I'm assuming her but I shouldn't? Yeah, I know,

Melissa 21:36
it is a her and you know what, I think over time, he trusted me as a parent to make good, you know, like, I wasn't being radical. I wasn't like, Oh, she's 59 just let her ride it out, you know, I light incense

Scott Benner 21:49
and have a drink olive oil.

Melissa 21:51
Totally. I mean, I think I really honestly think she knew I had my act together. I mean, I, I really, because of my experience. In the beginning, I felt like I and I as an educator, too. I felt like I needed to read and hear everything, you know. And so I really did read and hear everything I went to diabetes conference, I, you know, we went to City of Hope and hurt. I mean, I just really engrossed myself with a lot of education on on it and how to treat it. And so I think I proved myself to her that I wasn't, you know, being. So she's kind of backed off to the point where she did didn't actually involve ourselves at all anymore, which is good and not good. You know? Um, well,

Scott Benner 22:31
before you move on, I want to say that what you just said is, I think a staple of working with the school, right? It's that you have to, you said prove yourself, I think that's like, I think you have to have a few experiences over and over again, where the nurse finally goes, Hey, you know what everything this person has said, is working out the way they said it was going to, because they don't know you. And they do know every other kid in the school, right? And a lot of those other kids have diabetes, too. And some of their parents don't know what they're talking about. And, and so they're not going to take just someone's word that they know better. And how else are you going to do that? You can't tell them. I mean, you can't sit down. And you know what I mean? Like, if I was a great artist, I couldn't sit down and explain to you I was a great artist, I'd have to paint something and let you see it. And so I think that's what this is, is that you just have to live together for a little while, build some trust, and then grow on it. But But what do you think happens in that moment? Where is it just this? Like, is it a parental defense? Is it like, what happens the first time you say to the nurse, look, it's point one, not point two, and she disagrees with you? Do you feel like oh my god, that woman is gonna kill my kid? Or like, what's that like, visceral feeling?

Melissa 23:43
You know, what I initially let her make I in the beginning, I was like, Okay, we'll do what you want to do. And then because I kind of knew the outcome wasn't going to be what she expected it to be, you know what I mean? And like I said, so the way that it works is that there's a nurse that oversees the health tech, and the health tech is someone I truly 100% trust and I think if she was making the call, I would have been more apt because I feel like she knows my kid really well, you know, she's the one in charge of her all school year. And but the nurses just kind of sporadically in and out of the school. And she has, you know, like I said 4500 different students to you know, oversee. And I so I did initially let her kind of make that call. I didn't like it and then other either her blood sugar was high or blood sugar was low, and I kind of you know, let her you know, like I said, I think over time she kind of said, Okay, I think she sir Come to the fact that like maybe I knew a little bit more about my kid health wise medically, then maybe she did textbook wise,

Scott Benner 24:48
it's interesting that you both were in the same situation. Initially, the nurse didn't know or trust you and you didn't trust her so

Melissa 24:54
well. And I think I mean, and and to be honest, I think that's what the And this is why it's like baffling to me because I feel like everyone's situation, I mean everyone's needs and what they want the school to be, and what you know, the kids are able to perform, and what they're willing to provide. And each family is really different. And I don't feel like I feel like school district that my daughter is at, they don't quite the lady who's overseas, the health nurses are, is not medically trained at all, she has no medical background, yet she makes some medical decisions that I feel are not smart and not, you know, safe. And so this hierarchy of like, Who's in charge of who is really weird, and I feel like the nurses that have everyone should be the one making any medical calls, not, you know, some district employee with an admin credential. And just because, you know, I don't know, it's just really weird and replate wasn't as full when they made the position. Like, right,

Unknown Speaker 25:57
I mean, yeah, right, right.

Melissa 26:00
Let me Oh, man, I don't know if that's, that's the, you know, issue that we're having now is that we have someone in charge who really doesn't know, diabetes, and then isn't really willing to work with us, like a couple of us, our parents in our district are trying to get them to write a diabetes Handbook, and kind of update the training that they're providing the health checks, as well as there's like, there's three individuals at each site that are supposed to be trained with diabetes care. And one of them is the health tech, which is they're great. They deal with it day to day. The second one is like a secretary, who, in my opinion, shouldn't be part of their job description, you know, when they're answering phone calls and helping parents and they should I mean, band aid? Yeah, I mean, cool. They scraped their knee, great, but not measuring carbs, and insulin and that stuff. And then the third one is admin, the principal up the site, which to me is like, is, you know, I don't know. So it's so crazy, I feel. And the health check at our school is amazing. She was there every day, all day, I would feel very comfortable. But when she's not there, she's at lunch, it's kind of like, Oh, God, please let this hour be great. Or let us have a good day. Or I always have someone locally as a backup, because it's scary. Not you know, to have someone in charge your kid that doesn't understand it,

Scott Benner 27:24
you know, so you're really explaining a situation that led me to, you know, texting with diabetes, like how to talk to Arden and eliminate other people from the circle. Right? And because what you're describing, if, from your perspective is simple, right? And it was my perspective to like my kids, there's, you know, she's, you know, using insulin, this is all could be very dangerous. You really all should really understand. But then I stopped them looked at it from their perspective. And I was like, Okay, this is a, this is a bureaucracy this this place, you don't mean like, and, yeah, totally. Yeah, they can't get they can't get the things right, sometimes that they need to get right around teaching kids. And now I'm asking them to make these medical plans. And I thought, What's more reasonable, that I'm going to fix the political and and, you know, social and hierarchy structure of a school? Or if I just look at this whole thing and think, how can I handle this and take them out of it? Because I do, because everything you're saying, to me? Seems seems very doable. It seems altruistic, I hope you get it accomplished. But by the time you get it accomplished, your kids gonna be in 11th grade. Right? I

Unknown Speaker 28:39
agree. So

Scott Benner 28:40
So I agree. I just one day, I was like, Okay, let me pretend these people aren't here. How would I do this? If Arden was just in that building? And I was like, okay, the best way to do this is to just remove other people from the scenario and hope and just put them in charge of, you know, holy crap, everything's wrong. Emergency Plan, handle it? Yes. Let's just make sure the school can knows how to keep her alive. And I'll do the management stuff remotely.

Melissa 29:08
Yeah. And you know, what, actually, so when she started, she's going into second grade. Now, the kindergarten year was really kind of a, like, oh, we'll see what we can do. Last year, I realized by the end of the year, she, I really should be just texting her, instead of texting the health tech, who then calls the classroom teacher who then sends her down to the nurse, and then all of this fat, you know, a lot of extra. And so this year, hopefully, we'll have the five before before school starts and or, you know, relatively within the first week, and that's one of the things that I want to request. But I also know that my daughter who's very responsible, and from the get goes, wanted to do a lot on her own. And she at times gets overwhelmed by how much you know, she gets feels the pressure of like, oh, if I give myself too much, you know, I could make myself go super low, or if I don't give enough, and I'll have to stop and do this again. So I just type walk, you know, our tightrope walk of what kind of responsibility? How much responsibility Do you give them? And how much you say like, Oh, well, they're, you know, I want them to still enjoy pool and be a kid.

Scott Benner 30:20
Yeah, but her then her, excuse me her only responsibility, then in my mind, the way you're setting that up is you have to tell her Look, your only responsibility in this is to read reread and be sure. I'll take care. I'll take care of everything. It's like Mommy will make all the decisions. And you only thing you need to do is make sure you're doing exactly what's in the text message. Take 20 seconds, stop what you're doing read this. Make sure you understand it double check it before you push the button. That's it.

Unknown Speaker 30:44
Yeah, no, you're right. Yeah. And

Scott Benner 30:46
then it'll, it'll grow from there at her pace.

Melissa 30:48
Yeah, absolutely. And you know what, and now the looping thing is helped a little bit more. Because we, you know, I've always was like, if I saw an arrow going up, I wanted to correct her immediately. I wanted to make sure I didn't get too crazy before, you know, it's just, you know, so hard. Yeah. And so now I feel like our, it's been better, it hasn't been seamless. But it's been better in controlling her numbers. It's not so crazy. And you know, after breakfast, or at recess, or whatever it may be. So I'm hoping that will help kind of cut back the amount of intervention she's gonna have to provide for herself during the day. That's a weird thing for me to talk about. Because you and I are talking in

Scott Benner 31:36
August of 2019. Right, right. It's the first week of August, no one's gonna hear this for like five or six months. Okay, and but next week, six days from now, I'm recording my follow up to our looping situation. And it's going to go up right away. So in real time, it'll be up next week. But so I don't want to say something to you. Now that will confuse people six months later, but just so if everybody keeps that in mind while they're listening, a closed loop system right now that the most is talking about is is not, it's not FDA approved. It's not even from a company, Melissa downloaded this code off of the Internet, and, and is using it to help her Dexcom her daughter's Dexcom talk to her on the pod it's making decisions. Now, this is the same code that tide pool is at this point, trying to move through the FDA to get it approved, so that you will be able to use the loop as an FDA approved algorithm on your cell phone, right?

Unknown Speaker 32:34
Yeah,

Scott Benner 32:36
we've been using it for a while now. And it? It's really interesting, because, because imagine you were married to the person who was the love of your life. And I don't know, 18 hours a day was absolutely spectacular. And everything was really happy. But every once in a while, randomly punched you in the face for no reason. Okay, like so. And so you're wandering through the living room, you're like, Hey, we're in love. This is great. Oh, my gosh, why did that happen? I've been assaulted. And then all of a sudden, it's over again. And you're so it's, it's looping is great. Here's what I've learned. You're my test. You're gonna be my test. You're going to get me right. Next week, Melissa. Okay.

Unknown Speaker 33:21
Yeah, I'm Mormon.

Scott Benner 33:21
Yeah. All right. When there's no food involved, I love the algorithm. It's amazing overnight. When Arden sleeps in, you know, when there's no active food nurse system, it's damn near perfect. If and here's the caveat, you get the 9000 settings correct that it requires to make those decisions. Getting those settings correct is mind numbing, and nearly impossible. It feels like once you get once you get them correct. It's amazing. Now here's the here's the problem. For all of you listening to the podcast to anybody who is, you know, being bold with instant thinking about stopping the arrows, like all the stuff that we talked about on the podcast, you are way better at handling a meal than the lupus. Because Because you're being flexible, right? You're seeing something, you're seeing an arrow jump up that you didn't expect, and your brain goes, Oh, we don't have enough insulin and you put in more insulin. The algorithm trusts the settings. So if you tell it This is 45 carbs, and you put the insulin in and the blood sugar goes up, the algorithm doesn't think anything of it. It goes Huh, doesn't matter. I put in the right amount of insulin for these carbs. This is going to be okay. Except that's not true. And it's not it's not a learning device. It doesn't like the next day go Oh, I remember this from yesterday. This time. I'll give it more. It watches it go up. It follows along with what the settings tell. It is right. And it's wrong. So what the loop can't do is it can't be flexible and it can't. It can't think about variables like like 45 carbs of this might not be equal to 45 carbs of that, that, yeah, that kind of stuff. It can't think that way. And it's so good outside of the food, that you start to trust it when you shouldn't trust it. Is that right? Am I right?

Melissa 35:15
No, I get it. Yeah.

Scott Benner 35:17
Okay. So amazing technology for anyone not listening to this podcast and having success. All those other people will try an algorithm whether it's going to be on the pod, you know, horizon, or if it's tide pool loop that you'll one day be able to use probably with any pump. And you know, I know for sure without a pod, because they have a an agreement with tide pools so hard to talk about his also specious at the moment. Yes, right. But all I'm telling you right now, closed loop pumping, is the future, we are all going to be doing it. It's amazing. If you listen to this podcast, it's going to be frustrating, and not at times, as good as you are. For all the other people that listen to this podcast, amazing leap. They'll have amazing leaps in their agencies and their successes and everything like that, because to Melissa's point, when it misses, and it will miss on the meal. And it goes up to 175 and sits there for three hours, it will eventually bring you back down, it might take six hours to go from 175 back to 80. But it will eventually get you back. Whereas, you know right now some people just see that 175 who don't think about it the way we all think about it. They're just like, okay, whatever, and let it ride there forever. Yeah. So it's gonna be an amazing leap for people who don't listen to this podcast. For people who do listen to the podcast, you're going to sleep way better, and be 300 times more frustrated at mealtime there. That's my experience with Lou.

Melissa 36:48
Yay. Yeah, I mean, I had a lot of the same similar. I mean, I'm still trying to figure out a little tricks to like when those mealtimes go wrong, you know, how do I trick it to, you know, make sure that they're giving enough infinite and I sometimes wonder if it's because I have a child, you know, because I know there's a lot of bloopers who are adults who have like, really amazing straight lines. And I'm thinking like, well, maybe it's, you know, maybe it's more than just food. Maybe it's like, reactions. I don't know, I overall it. I was really frustrated like you in the beginning. But I think overall, I feel like there's a lot of less thinking about stuff in between meals. And then there was before so it makes any sense.

Scott Benner 37:32
It does make sense to me that you'd be in that situation. And I'm gonna tell you for me, for as far along as I am with this. I don't think about diabetes at all. When when I'm doing it my way. Yeah, we've loop. I'm thinking about it more. But I've also slept through the night, more days in a row than I have since diabetes existed in our lives.

Melissa 37:54
Is that part of it is amazing, actually. So

Scott Benner 37:57
I'm trading one for the other. Yeah. And the reason that it took me so long, six months ago for you to hear my my follow up to my loop episode with Katie, is because I don't I didn't know how to talk to you about it. And you'll know it. I still am learning. I don't know. Everything I talked about in the podcast was like the culmination of years of effort, right? And then thinking and fixing things and going oh, this is where I do this and like so when I say something, you know, something to you guys at this point that sounds like like, like a T shirt slogan. Like he's like stop heroes. You know what I mean? Like, yeah, that was like six years of me figuring out how to do that and how to explain it to you guys in like two sentences. And so put put me into a completely new situation. I'm, I'm back in the learning process. I'm doing exactly what you're doing, trying to figure out how to fool it, how to like make it do what I want. Because here's the biggest problem with loop, right? It when it thinks you've put in enough insulin, but you haven't. And you go Oh, it needs more. When you put it in, it takes away all the bazel Hmm. So if your basal rate is three units an hour and you think you need three more units, you put the three units in as a bolus, it takes the bazel away and you're back to zero again. It's like, you're like your mother. And just Yeah, I know. I'm gonna curse so much when I talk about the loop on my own that episode. So it

Melissa 39:18
is it's I will tell you I felt like I'm a fairly intelligent person. And in the beginning with those settings there it was mind numbing how much I was thinking. I'm like, Is it the bazel? Is it the Max? You know, math being all God

Scott Benner 39:33
is is up here's my one fun thing. Why do an end? Why Why would an engineer look at a setting and say, Okay, what we'll do is when you make the number lower, it'll be stronger and when you make the number higher, it'll be weaker.

Unknown Speaker 39:45
You're absolutely right. Like

Scott Benner 39:46
I get how your math engineer mind thinks about it. But did you not think about everybody else when you made? No? Absolutely, like volume up is more down is yes.

Melissa 39:57
100% I am Yeah. I don't even know. And I feel like, um, I, you know, like I'm on the loop. There's like a new Facebook group for looping with kids. And I feel like a lot of parents want to know everyone's settings. Like, what's your settings? And? And yeah, and I feel like it's almost detrimental to like, look at someone go, Oh, that's a seven year old girl and I have a seven year old girl. Let me you know, type in their settings. It's like, No.

Scott Benner 40:25
I'll tell you right now the best piece of advice I got was from somebody who's on the podcast, who by now people would have heard, because I recorded her before you. But she told me to stop thinking of the the range as a range. She's like, Don't think of it as like, Oh, I want her to stay between 80 and 100. Think of 80 as when the bazel shuts off and 100 as when it turns on. And I was like, ooh, and that like light bulb? Me but so I will tell you that. There were three times I was gonna quit. First three, yeah, first three days. I was like, This is stupid. The second three days, Arden said to me, why are we doing this when we are so much better at it than this is? And I was like, Arden, I know you don't listen to the podcast, but right on kid. Yeah, great. We are way better at this than this loop thing is then the human.

Melissa 41:17
You know, we we make judgment calls on the fly like, oh, wow, we need to do this not? This is what you put in, you know?

Scott Benner 41:25
Yes. And I think that that's going to be an issue. You know, hopefully it won't be but that the expectations of people are way skewed on what this stuff is. Yeah, like they definitely think it's, you know, a miracle worker robot making like, you know, heavenly decisions. And and it just is not that. It's amazing. Because why? Because it shuts your bezel off when you're getting lower. Like and when you're getting and when you try to get high it Jacks your bazel up and it Jacks it up like crazy to like, yeah, that part is amazing how it works that I love around food. It's, it's I know, it's

Melissa 42:03
hard. It is hard. It I agree. I agree with everything you're saying I am. Yeah, it is definitely in it's so different than what you know other like what like you were describing and what you do, it's it is different. It's hard sometimes to have something work so well and then switch it completely and then have to learn something totally different. So

Unknown Speaker 42:25
yeah,

Scott Benner 42:26
I stuck with it because of the podcast. Because and because I believe that this is the way things will be done in the future for most people.

Unknown Speaker 42:35
And so will you stick with it?

Unknown Speaker 42:36
Yeah, yes. Okay.

Scott Benner 42:38
I got asleep. I'm almost 50 Let's get it

Unknown Speaker 42:40
right. Yeah, I get it. You know, I mean, like, I'm gonna Yeah, I can't,

Scott Benner 42:44
I can't, I can't like, I'm not gonna live forever sleeping the way I was sleeping before. And it by the way, it wasn't bad. Like, I don't want people to think like I was up all night. I was like, you know, it's just like, you know, one o'clock, you take a look maybe four o'clock. alarm, like that kind of stuff. But broken sleep is rot. It's worse. It's, I'd rather sleep for straight hours than six hours and get up twice. Yes, just I agree. And it's not get up to go to the bathroom getting up because that as long as you don't stub your toe, you don't. You don't really wake up. Yeah, I mean, we aren't getting up and making a decision about insulin or having that adrenaline rush of low blood sugar. That's difficult. You know what I mean? Yeah. So anyway, it's it's a it's, it's something I'm going to stay with, because I feel a responsibility to the people listening to this podcast, because I do believe that it's going to be an amazing improvement for most people living with diabetes and using insulin. Yeah. And because and because the sleeping part. And you know, for Arden as well, when she leaves for college, like this is just And plus, we don't know what it's going to be years from now. I mean, like, if it's this now if it's this good right now, coming from some well meaning people on the internet, yeah, right, then it's gonna, it's going to get amazingly

Melissa 44:03
better. Right. I and, and honestly, from the get go from the moment that we were diagnosed, I have felt that I have entered this type one world in a way that was less, you know, alarming, I think, than others only because I had a dexcom I had, you know, a pump. My experience wasn't you know, what people did 20 years ago, and I don't I look at it and go, Oh, my gosh, I feel so lucky that I did have the deck come to me with everything and still is everything. You know, without that I feel I feel like I could get rid of the pump and I could get rid of the looping and all of that. But if I didn't know her blood sugar, I would be anxious all the time. You know,

Scott Benner 44:42
no, I understand. I it's just, you know, the people who will tell you well before and all this stuff we all live to I'm like, Yeah, I get you, but this is better. So yeah, no, it's um, it just is it's it's having the information is better than not having the information. Okay, so, so we'll get away Actually, let's do this. All right here, I'm gonna say something and then pause, and then keep reading. Okay? If you guys would like to hear the conversation I had with Katy de Simone, go back to Episode 227. And if you want to hear the one I did as a follow up with Jenny Smith, you can go to Episode 252. Okay, Melissa, I'll fill that in later, when I actually know what episodes they are. I want to go back to the school thing a little bit, because you are in, you are in the exact same place I and most other parents find themselves in in this moment, you are scared, anxious, seeing people who are probably not really putting in nearly the effort to this diabetes thing that you need, looking for an answer, finding a lot of stone walls, what is it you're going to do?

Melissa 45:45
Um, you know, I, I don't know, I'm gonna do the best I can. I'm gonna rely heavily on the people I do trust. And, you know, kind of, I did a lot of pushback last year on on certain things. Like, for example, last summer, I asked, you know, someone change a pump site, if, you know, something happens to her, she rips it off, or Kenya was bent. And and I got, yes, the nurse will do it. And then later in the year, I found out from another type one. They said, No, it's not, we cannot do it. It's too involved. Um, and then I was, but I was never informed of that. So it's just a lot of like, misinformation and kind of what's told to one family isn't necessarily communicated all families. So I did a lot of like questions. I mean, I'm gonna push back on certain things like for that, for example, you know, and they basically when I did ask, Well, why are you saying that? You can do it, but then telling me telling another family No. And they had an old Medtronic pump. And I guess it was too involved for the nurse. They said it was too complicated for the nurse to change the Medtronic pump. But by Omnipod pump was pretty easy, and that they probably could do it that they needed me to contact a trainer to train the nurses. Well, when I contacted Omnipod, they said, We don't train school nurses, you know, which I can understand why. So I offered I could train. I mean, I've been doing this now for a year and a half. I'm pretty sure I know what I'm doing. I could teach them but I never got a response. So it's been a true battle. And I think at this point, like you mentioned, I think I am going to rely solely, not solely but mostly on my daughter and, and you know, take care of herself. He's super responsible, and I trust her more. In fact, I started teaching her how to change the pump. And and when I spoke to the school board in regards to this, about it, they you know, it's like How can a medical, you know, a nurse not feel comfortable yet my six year old is capable of doing it. It doesn't make any sense. Like it's too complicated for a nurse but yet my six year old could do it. I don't get it.

Scott Benner 48:01
does make sense. Let me just be a little more cynical. So here's the Okay, you live in Los Angeles, the weather the weather's beautiful. Nobody's day really gets going till around 1130 you're living a different kind of like wonderful life people. People who have never been in LA don't know. I swear to you, nothing happens to like 1112 o'clock. Yeah, right. Right. It's gorgeous. There, the weather's fine. There's no humidity, people are beautiful cars are beautiful. Everything's beautiful. Life is good. Let me give you a little more Philly New York about this, okay. They don't want to be responsible. They don't want liability. And as much as they try to shine up a school to make it look like a community thing. It's a political machine. Right. Okay. And so, my, I got to learn it early on my daughter's my son and daughters principle of their, their, were their kindergarten and first, second third, I think fourth fifth grade was, was, as I looked back on it, a politician. She smiled and waved and everything was okay. And I came to realize that if I would have walked into that building, and the whole building was on fire, and I would have found her and said, Oh, my God, the buildings on fire, she would have given me the same smile, the same wave and the same reassurance that everything's going to be okay. And we've got your kids best interest at heart calculate,

Unknown Speaker 49:19
right?

Scott Benner 49:20
So their job, because think about it. You just said like 4500 kids in that school or something like that, right? Oh my god. 4500 kids. Most of us believe our children are little princes and princesses and we want them treated very specifically. Well, if they start doing what you want, then they're going to have to start doing what everybody everyone and for some reason, they can't separate medical from Billy likes an Eastern sun on his face around two in the afternoon, right? Right. Like the difference between a real ask and a an a BS ask right? Hello. So they just don't do anything. Their job is to do nothing. And get you out of the building, and then get somebody else in there. And just as minimal as you can teach the kids this curriculum as best they can. And they're moving you along. They don't. They're not thinking about the things you're thinking about. And even when you describe them, they don't understand them. They don't. And if they understood them, they still might not care. Because they, they fall back on that we've had other kids with diabetes here. I actually had a woman say to me before, do you know how many kids with diabetes have been through the school? They're all still alive? And I was like, I was like,

Unknown Speaker 50:27
Oh, thank you. Is that the Mendoza

Scott Benner 50:29
line for this? Like, yeah, not dying. Wow, like that. That's the bar. And so I said, Well, what are their agencies? What were their blood sugar's during the day while they were here? How well were they able to think about the things you were teaching? Their blood sugar's 250? All the time, where they cloudy? Were they always worried about being the kid who, quote unquote, passed out at school one time? Like, like, what if we make their lives healthy? And good? Like, I think that's doable. And so when I put it on them like that, and I said, How about I just take care of this? And we keep you out of it? Oh, no, we have to be very involved, blah, blah, blah, blah, blah, because that's how they always did it. And then I said to them, you know, what, if I'm making the decisions, you don't have any legal liability, and they went, Okay, when do you want to start? And that was it. As soon as I took away their liability, they didn't care.

Melissa 51:15
Absolutely. And you know, what, this year's D, which is diabetes management plan that they gave me, I got in the mail at the end of the school year, it actually has somewhere on there, like parents are able to make, you know, decisions against the carbery. Things like that.

Unknown Speaker 51:31
You need Yep,

Melissa 51:32
yep. And so I mean, an AR endo is pretty awesome. He will I mean, and so that leaves me another I'm, we're going to end next week, and I am a little bit nervous about telling them about looping, because we've been only doing it since May. And we haven't seen him since then. And I don't know how he's gonna react or what he's gonna say or what he wants for us to do. But I know that and that was my decision I need to kind of make is like, how independent do I want Chloe, I don't necessarily want him to check the box. fully independent, even though you can do a lot, because I know them. They have zero responsibility and taking care of her. And so I need that kind of still where Yes, she's mostly independent, but they'll need some adults, you know, help. Okay.

Scott Benner 52:20
So I'm looking at a text message here from Christina, Christina. Nobody knows who you are. So don't worry, when I read this. She's trying to get the same thing set up at school, you know, where they make decisions. And they, they're out of it. She said she walked away from the windows office today on the medical plan stating that, quote, child self manages his diabetes with direction from parent through text messages while in class.

Unknown Speaker 52:44
I like it. That's perfect. And

Scott Benner 52:46
that is perfect. And when I and she's like, you know, she's like, well, now let's see what they do. You know, when I go in there, and here's the only thing I said to her, be direct, be nice. Remember that you're not asking permission. You're informing them. Right? You're not in there asking if it's okay. You're in there, letting them know that this is what's going to happen. And let's get it in, you know, we can I can do whatever you need to make it comfortable for you. You're not you're not asking permission to your kid. Right? Right. It's their health, right? You're, you're telling them what's going to happen. Imagine if your kid had, I don't know, cancer. And they needed an infusion of something every day at one o'clock in the afternoon. And they were like, and we're not comfortable with that. But you'd say I don't care. It's keeping them alive. And they'd go, Oh, you know what cancer? Yeah, I guess so. Because they think of that is more dire. Yep. And it's no more or less dire than what you're doing. But you write your thing doesn't like infuse them with fear. Like, Oh, right. Your kid will just get a little busy. That's okay.

Unknown Speaker 53:48
You get them a giant juice bar.

Scott Benner 53:52
They'll hang out with the nurse. It'll be fun. Yeah, except for the 45 minutes of math that she she doesn't get mad. Yeah. And then three years from now I think she's got a head injury because she can't add Yeah, I mean, like yeah, now Come on, but you're doing the right thing.

Unknown Speaker 54:06
I got it. I love it. I think you're gonna do well with it.

Melissa 54:09
Well, thanks I'm gonna try I mean every year is worth a try you know what I mean? And and I do I feel more of an obligation or I not an obligation or responsibility for those that are coming I just I feel like a lot of type one parents don't realize what they can ask for you know, from a school or what you know, the schools can do and should do you know, a lot of times they let the school direct them on what they're going to do like Whoa, I got the iPad to follow on a dex calm, other parents were like, what? They didn't tell us that they gave you an iPad and I said, Well, you need to go in there and say I want an iPad for the health tech. Follow my kid you know, and so it just things like that. I mean, it's just they're never gonna disclose more than they have to and offer more than they have to pay for and I get that phone today. Actually the

Scott Benner 54:56
feeling I have when I get in bed at night and I look over at Kelly and I think Would she be amenable to sex right now? And yes, and if she would be, she doesn't tell me that, right now I have to I have to ask because if I because she's trying to get to sleep, you know, like I get, it's a very similar situation like, and you're sitting over there thinking I do it. But if he doesn't say something,

Unknown Speaker 55:17
yeah, I'm gonna go right to bed.

Scott Benner 55:20
Everyone, here's the truth. Everyone's looking out for themselves, which is not a not a bad thing. And, and the school is doing the same, they're trying to limit their output of cash, their output of manpower, their output of responsibility, the minute they tell you, you're going to do something, that's the minute that when they don't do it, you can sue them. And so they're trying to stay out of actionable situations. totally understandable. And you and you want the whole world to know, which is beautiful, by the way, thank you. Thank you, for me, and for everybody else listening. But let me rain a little bit on that rainbow for you for a while. It's this is the struggle, it's always been the struggle, it's always going to be the struggle. And it will always be people like you who yell louder and make it in this moment, better for the people around. But in that same school district five years from now, someone else like us gonna come in, see the same thing. And it's going to start all over again. It's just it's a cycle. It's something's about society are so big, you can't fix them, you can only bump and nudge them into line. Do you know what I mean? Like, not see, I've done the thing here, where? unintentionally, I've brought it back to diabetes. But but it's diabetes is such a big idea that even with a great algorithm, or a dex calm or insulin pump, or all that stuff, you're still going to get low once in a while. I don't know where you're still gonna get high once we're out of nowhere, there's no perfecting it not right, not right now. And it's the situation at schools the same thing. You just, you're just gonna have to bump and nudge when things get out of whack, but mostly, just trust that the world's been spinning for a long time. And you're probably going to be okay, most of the time.

Unknown Speaker 57:05
Yeah, that's it. Yeah.

Scott Benner 57:08
I feel like I've dropped a lot of wisdom here, Melissa.

Melissa 57:10
Yeah, you did? You really did? Well, actually. I mean, I know, I really do feel like, you know, I think, you know, when it's when it's involving your child, you know, like the mama bear comes out in here, like, you will take great care of my child. Yeah. But I think, you know, in reality, you helped me answer a lot of like, uncertainty of what I was going to do with my child this year, as far as how much responsibility she was going to have. And I think, you know, I think it becomes clear that and I felt it this way last year, too, but, but I really do need to trust the people I trust the most to take care of her. And the rest of them that they say are qualified to take care of her. And you know,

Scott Benner 57:48
they're there to call 911. Totally, yeah.

Melissa 57:51
I don't even know if they know how to do glucagon. I mean, I really don't know. But let's hope that they don't. I don't hope I can get the nasal one so that no one has to mix the powder with a liquid because that probably is undoable for some of them. There's

Scott Benner 58:03
another one coming to that's not nasal. It's still injectable, but it's pre mixed. Oh, I think that's gonna be on the podcast in a few months. So

Unknown Speaker 58:11
okay, that's cool, too.

Scott Benner 58:12
But yeah, listen, here. Here it is. It's so funny. I, you and I just took this episode that I thought I was just gonna probably fall in line six months now. And now you made it something I'm gonna put out next month right before back. Oh, yay. Because because this is what people because you are trapped in the same trap that everyone gets trapped in. And somebody like me, who's so much farther down the path than you is that stuff, they're going luck. A lot of the stuff you're worried about is not going to be a problem. And a lot of the stuff you're concerned with isn't fixable. But here, here's the way to like negotiate through it without me self mental and by the way, without making the school hate you. Or, or turning you into the crazy mom, because that's what they're gonna think. Yeah, I heard I can still hear myself standing in that office saying, You don't understand what could happen to her. And I'm like, and I look back now and I'm like, Oh, they must have been there like and because they didn't understand. They must have thought, Oh, look, he's out of his mind. Isn't that sweet? You know, and so, and they're never gonna understand because they don't have diabetes.

Unknown Speaker 59:08
Right. Right. But

Melissa 59:10
no, absolutely. I feel like I said that. I feel like I have said that. You know, like, you're just not getting it. You know? So I agree. I haven't gone crazy yet, but I

Unknown Speaker 59:19
felt moments of it before you

Scott Benner 59:21
explain. No matter how accurate you are. The crazier you sound.

Unknown Speaker 59:25
Yeah. No, I get it.

Scott Benner 59:27
She has to have gummy bears with her at all times. Yeah, something like that. Yeah. Somebody with diabetes. Everyone else hears, hey, there's a lucky lady in the office. What time's lunch? They're in a different world. And so and so. Take them out of your diabetes. Well, like you know, leave them there for the things you need them for. And yeah, and don't get me wrong to some of you are listening right now. Going nurses. Excellent. And this is all Bollea. Sure if your nurse is excellent. You're not Melissa situation. Yeah. And good for you. You know what I mean? Like, yeah, do whatever you want to do. I'm telling you that for 18 hours a day Your kids at home with you. You're managing the way you're managing. If it's going really well, there's no reason to give that away while they're at school. That's all, you know. Yeah, no,

Melissa 1:00:09
that's the exact point. I mean, that is it hard to relinquish control, someone who doesn't quite know what they're doing? I am, and I am jealous of the people who have really great nurses who are, you know, working or even aids that are with their child all the time. You know, it's just not my world.

Scott Benner 1:00:25
You're lucky. Yeah, that's, that's an amazing someone else can come on and have in the past in the last year, somebody's been on news, like, my kids, you know, bah, bah, bah is amazing. I actually have had on a parent, and the person who aids the kid at the school like in like succeeding weeks, and, and it's an amazing story, when you have something like that. That's crazy. Cool. But most people don't. And by the way, your situation was said to go the other way, is about a million times better than a lot of other people's situation. Yeah.

Unknown Speaker 1:00:53
As

Scott Benner 1:00:54
you think it is. People out there right now are going like, wow, I wish Yeah, right. I

Melissa 1:00:58
get it. No, I get and you know what, I remember listening to one of your podcasts, that was someone who privately hired a type one college student, and you know what I'm talking about? And they went into the school and Yeah, kind of shadow the kid. And I thought that was so cool. But I also don't have that kind of money to have, you know, someone come in and do that. Yeah, totally. I thought that, but I thought what an amazing fix to what they're, you know, and they're capable of doing. And I just thought that was so smart to hire someone who is, you know, capable of taking care of their child at school. I mean, that is another example. Maybe they didn't really trust the system there too. So

Scott Benner 1:01:35
your gardener or your, your cool? Yeah,

Unknown Speaker 1:01:37
no, no, I

Unknown Speaker 1:01:40
got a giant yard, you know?

Scott Benner 1:01:43
Listen, I think everyone, so you're making the point that no matter what situation you're in, there are some tools at your disposal. Mm hmm. Some people can afford to, like, you know, hire someone to go to school with their kid, that's me if that if you can do that, you want to do that. That's amazing. But there are tools at your disposal to the mistake, the mistake I don't want anyone to make is to look at the system. And think I can't change the system, or stop because you're right, you can't change the system, although some people have made inroads, but it's an there was someone on from Texas A long time ago, who literally changed the way their entire school system handled diabetes. But, but it was an undertaking that, you know, it didn't happen, like with a phone call an email in time in time for your kid to go back to school. Right? So, um, and so I think you just have to, you know, you have to look at the course you're running and just run it like, you know, don't don't run into walls, don't scream and yell at people who aren't listening. Just do what works. You know what I mean? Like, yeah, I agree. Yeah, in the apocalypse, Melissa, when the zombies are coming for you. You don't stop and go, Well, they're gonna kill me because I don't have a stick with me. You look around for something else, and you keep fighting, right? So you're in that situation, like, it's not perfect. It's not perfect. But stopping is not really an option either.

Melissa 1:03:01
Totally. And it's not as bad as it could be. Like you said, it's not as that I mean, we really do have an amazing health tech that loves my child, like her own and that person. If she wasn't at that site, I'd be probably a lot more nervous. But she is there and she leaves for one hour and in that hour time have lunch, you know, I just have to hope and pray everything just kind of falls in line. And you know, and like I said train and probably talk a little bit more about what my daughter condition like she's hypo and aware. So that's, but thank God for the dexcom because I could be like, Hey, girl, you need your sugar, you know? Um,

Scott Benner 1:03:38
so yeah, well, Melissa, we are at the end. I know it probably seems unlike that because so easy to talk to me and everything. But I have and I have another call coming up, like in a couple minutes. So I have to jump. I will let you know when I'm putting this on. But like I said, I'm very much leaning towards the end of summer, early fall. So thank you so much for for sharing your story. And yeah, thanks for No, I really appreciate it. I really do. I'm sorry, I'm jumping so quick that usually a more

Unknown Speaker 1:04:04
No, no, no, don't worry. I get it. Thanks so much. All right. Have a good day.

Scott Benner 1:04:10
Well, thanks to Melissa for sharing her insights. I thought it spurred great conversation. I'm really sorry that I sat on this episode for so long, but I was trying to do the right thing. And we'll see what happens. Anyway, thanks again to Contour Next One that's a blood glucose meter you should know more about and of course the touch by type one. You can find them at touched by type one.org. And the Contour Next One, is it Contour Next one.com go there to find out if you're eligible for absolutely free meter today. Hey, who remembers Episode 53 Terry lives on a boat? Well, Terry is going to be back later this week on the podcast to do a follow up. It's a really terrific conversation a little longer than they are usually but I had such a good time and Terry did a companion blog article. To put on my blog to go with it. So, you know, look forward to that is what I'm saying. The way I got Terry back on, by the way, is by asking online for people's favorite old episodes, who do they want to hear from again? And Terry came up a lot. If you have other such thoughts about people you've heard on the show, before that you'd like to hear again, send me an email, let me know. Maybe it'll happen. Thank you so much for listening to the Juicebox Podcast for sharing the show with other people. And the wonderful reviews and the wonderful reviews that everyone's leaving on Apple podcasts through their podcast app. Really cool. Thank you. This show is about to have a milestone month, and about to run into a milestone. huge milestone for the rest of it. It is almost completely due to how much effort you guys put into sharing the show. I'm giving myself a tiny bit of credit for making the podcast. But I mean, seriously, I could be making the show and you guys don't share it and it just doesn't grow. So thank you so much. Have a great day. I'll see everybody soon. Wash your hands.

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