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Podcast Episodes

The Juicebox Podcast is from the writer of the popular diabetes parenting blog Arden's Day and the award winning parenting memoir, 'Life Is Short, Laundry Is Eternal: Confessions of a Stay-At-Home Dad'. Hosted by Scott Benner, the show features intimate conversations of living and parenting with type I diabetes.

Filtering by Category: Algorithm Pumping

#977 Looping Around

Scott Benner

Tina's son has type 1 diabetes. Today we talk about loop and Omnipod 5.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon MusicGoogle Play/Android  -  Radio PublicAmazon Alexa or wherever they get audio.

+ Click for EPISODE TRANSCRIPT


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 friends and welcome to episode 977 of the Juicebox Podcast.

On today's podcasts I'll be sorry my phone was muted. On today's podcast I'll be speaking with Tina. She's the mom of a young man living with type one diabetes. She is very involved in the looping community. We're going to talk about looping and Omni pod five today. While you're listening to us talk about that. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan for becoming bold with insulin. Check out the private Facebook group Juicebox Podcast type one diabetes want to talk to some people who are looping or using Omnipod five or that new Medtronic 780 G I've been seeing a lot of posts for that lately, but also I see T slim libre Dexcom, anything you want to talk about? We talked about it in there. Juicebox Podcast type one diabetes on Facebook, it's a private group with 40,000 members in it. I bet you there's a conversation happening right now that you would enjoy. I have a ton of episodes about algorithm pumping, go to juicebox podcast.com. Go up to the menu, click on algorithm pumping or in the private Facebook group, the feature tab, there's a whole list of episodes. This episode of The Juicebox Podcast is sponsored by cozy earth. Now, at cozy earth.com. When you make your purchase doesn't matter if you buy one thing or 50 things if it's $1 billion dollars. If you use the offer code juice box at checkout, you will save 40% off of your entire order. So just think of what 40% off a billion dollars worth of joggers would be. Now I put myself in a position where I have to figure out what 40% Of a billion is. Alright, so a billion. I mean, just in case one of you buys a billion dollars worth of sheets, towels and joggers, a billion divided by two, which would be half a billion or 500 million, right? Yeah. So then 400 You'd say $400 million off your billion dollar purchase with my offer code. That's incredible. Also, you'd say 40 cents off. $1 $40 off. 100 You know how percentages work? Anyway, that's what you get for listening to the podcast. 40% off at cozier when you use the offer code juice box at checkout. today's podcast is also sponsored by one of my favorites, US med us med.com forward slash juice box or call 888721151 for us med is the place where Arden gets her diabetes supplies from and you can as well get your free benefits check today with my link or that special 888 number. It's just for Juicebox Podcast listeners. Us med.com forward slash juicebox or call 888-721-1514 Get your stuff the way we do from us med. First of all, let me turn it right on. If you're planning on crying, let's start recording right now.

Tina 3:16
It's been a it's been an emotional last couple of days.

Scott Benner 3:19
Okay, I cried. The episode that went up today. This this young girl, she's like 18, she was talking about how she she was trying to like, do some public speaking. Yeah, she set this thing up at her local library where she was going to talk about chronic illness and service dogs. And no one showed up. And she still gave the talk to the one person that helped her set the thing up from the library and she's telling me this, and I am Oh, that's hard. I'm like crying while she's telling me and I was on cold medicine at the time. So I'm like, I think this might be the cold medicine. I was like, but she really got me. I was like, wow, she did it anyway. You're starting to get me Yeah, you know, I mean, if I shut up and no one. Listen, you don't know. Like if I showed up and no one showed up. I'd be like, I gotta go.

Tina 4:08
I think it's even. I don't know. It's how awkward it is for the one person that's there.

Scott Benner 4:15
And they all did it, I thought was really cool. So anyway, you introduce yourself the way you want to be known meaning you don't need your last name. If you bring up other people in your life, I don't care as a matter of fact, I don't care what you talk about, like with all sincerity, you can talk about whatever you want. But just don't use someone's name and then an hour from now say Oh, I shouldn't have said like Patty's name be like like, you know, can you go back and take out the 17 times I mentioned my aunt or something like that. Like please just don't do that. But other than that, it's absolutely up to you what you talk about I don't care. Make sense. I'll try not to see names okay for call names. You can curse if you want. I'll just Yeah, yeah. All right. Go ahead, introduce yourself. We'll start We're talking, you are being recorded.

Tina 5:02
All right. Hey, I'm Tina. And I have a newly 13 year old son who was diagnosed on July of 2019. So he's getting getting ready to hit us four years, actually next week.

Scott Benner 5:16
Yeah. Wow. Was it right at the beginning of July? It was July the third. Did he get it for the centennial? For the, for July 4? Was it? Uh, he sure

Tina 5:26
did. It was on a Wednesday, Tuesday, Tuesday night, my husband and my husband Phil and I were talking about some problems he had been having, which included a lot of Bedwetting, that had just arisen in the last like four or five days. And we, we decided I would take him to the pediatrician that have it checked out, because actually, we have quite a quite a bit of history with older adults on our life with UTIs. And, you know, so the first thing that's kind of coming to my mind is like, maybe he has a UTI, but also I was like, Maybe it's his age, and he's he's starting to hit a growth spurt, you know, things like that. And so, so I said, I will take, you know, give it, give it a day, and see how tomorrow goes, and if, you know, if tomorrow doesn't things don't improve, then I'll take them in to the pediatrician on Thursday, and haven't checked for UTI. And my husband said, yeah, and have a sugar checked. And I literally, it's like, one of those, you know, memorable moments of life that I can't imagine, you know, I was just like, I can't even fathom that, that would be an issue for for him. But I said, Okay, I will get up in the morning, and I'm going to take him tomorrow morning, instead of waiting, because I realized that the next day was the fourth of July, and Friday, I was supposed to fly out to Chicago to see a friend. And so I actually wound up staying up for quite a while that night, like, check in and you know, just checking on him and also thinking, well, maybe I should call him into the ER. But then also, you know, no, no, it can't be because that's, that's not, you know, we don't have problems like that. What so the next morning, I got up and I took them to the to the pediatrician immediately. And they they had had us in there like by 830 and had him pee in a cup and brought a glucometer and checked his his blood sugar. And the the pediatrician put, you know, Reese's sitting up, and I don't think I introduced my son's name, his name is Rex. But he's sitting on the table. And she puts the glucometer down on the other side of him. And she walks out of the room. And I'm sitting on the bench, and I stood up and I looked at the glucometer. And it said 271. And it was literally like you see in a movie. I felt like this, like were you back up really fast and then slam into a wall, you know. And I made no reaction. I just sat down and waited. And she came back in. And actually before she came back in recessed Mom, why is there a blood sugar checker in here? And I said, Why do you know what that is? And he says, I saw it on Tim and maybe that's a little learning app that he has and enjoys. And I said well, the symptoms that you have are, you know, they're possibly symptoms of type one diabetes, and he immediately starts screaming, I want to have a normal functioning pancreas. And I'm just like, what? And he goes, and then he starts screaming, I don't want to die. I don't want to die, which got me you know, rip me apart. And so anyway, I you know, they they taught, came back in and said we so he has type one diabetes, and we have called the hospital and you need to go straight there and they will rush you back. They're expecting him and they will get you in immediately. And I and we were actually right across the street from the hospital. He was born in and I said do you mean the hospital right across the street? And she goes oh no, he needs to go to the big hospital with the Children's Hospital. You're gonna be there for several days and I'm like

Scott Benner 9:45
look questions. Why did your husband think to say blood sugar?

Tina 9:51
Oh, I really don't know. Um, but we have no diabetes in our family. We have no Actually no autoimmunity in our family in our big family, you know, and I just don't know. But I also felt kind of like an idiot because I have a medical background. And it didn't. That just wasn't the thing that I thought of either.

Scott Benner 10:17
And then the other question I have is that where does Ries come up with functioning pancreas at nine years old? Is it from an app? Or you don't know,

Tina 10:26
Reese's? A little bit on the precocious side, shall we say? He, he has a lot of knowledge. And he collects it about all kinds of different things. And he, yeah, he said, he just everything he sees on there, he pretty much can reference in the future. You know,

Scott Benner 10:51
I mean, that's upsetting for you. But I was impressed with all all that he knew. I mean, he was nine.

Tina 10:58
Yeah, he just turned nine. It's crazy. So I cancelled my trip to Chicago, and actually canceled my trip that was going to be a month later, I supposed to go down to Guatemala. And we got on ride.

Scott Benner 11:13
Chicago and Guatemala, your friends in Guatemala as well.

Tina 11:18
We have a group from our church who goes down? Well, it's not just a group. But different people go down and have been doing it for probably 12 or 15 years now built a library and have a lot of programs down in Guatemala in this certain village called palot. Up in the mountains, and like they've taught tilapia farming and pig farming, and you know how to how to manage business well, and then built a library stocked them with computers, taught them how to use them, we have we support students through scholarships, so we, and they have to pay for school from middle school through high school through college. So we've got students that we, we support doing that well. And they they take trips a couple times a year.

Scott Benner 12:09
Very nice. Okay. So is Reese. How was the in the hospital? I'm trying to, I'm trying to imagine him in the hospital with all of his, like, half knowledge that he has built up and what was going on? Like, how did that process go for him?

Tina 12:25
He was so just just worn out. And he had a lot of symptoms that of course, we attributed to other things. But he, he was shocked. He was not happy. He was not comfortable. But we had so such a good team in the hospital. And so many people came and saw us every day there were there were usually a lot of people in there with us. And I think he took it pretty well. He gave himself his first shot in the hospital. And they eventually let us go home.

Scott Benner 13:02
How about you? How did you take it?

Tina 13:05
Not as well, I was I was a mess. And normally I'm like our family's medical reference person, the person they call when they have anything they want to know what it is, you know, can you come check this out? And we're in the hospital and I'm asking my husband, can you can you talk to the doctor when he comes in? Because I don't have my words, you know, and I was just, I'm just devastated. And it it literally took me we were in there for three days. And it it took me till about the time we left to feel like we could that I could be okay to leave.

Scott Benner 13:41
Were you worried that you couldn't manage it? Or was it like a psychological like overwhelming? Or were what do you think you're?

Tina 13:50
Well, I had no people with type one pretty much all my life. Not many people, but I had a friend in school when I was in elementary, middle school. And then I had a really good friend who in college who had it and you know, I saw that they could live and thrive. And I don't know, I just was not prepared at all I knew it would be would alter our lives forever. And I wasn't prepared for that. And and it really took me a while to you know, to be accepting of it.

Scott Benner 14:25
Yeah. Where do we meet? I have a feeling that we speak privately. In the beginning we did write like by video, right? Like we spoke.

Tina 14:41
I had written something on on the Facebook page answer to something some I made a suggestion on somebody's post. And then you said you reached out and said hey Tina, can I call you? And I said sure. So I was actually at the emergency room with my mother and when You called and I stepped outside and we were talking where the where the ambulance pulls up. And you're like, if this isn't a good time, I'm like, this is a good time.

Scott Benner 15:11
I'm looking at not to be in the emergency room.

Tina 15:13
That was that was in was either September or October of 2019.

Scott Benner 15:18
Wow, it's such a long time ago. Okay. And the I guess I just want to lead into how you got to looping at first i So what's the technology and the understanding you leave with the hospital? And how long does it take you? And how does it then what's the path you take to learn about looping?

Tina 15:42
So this was this is part of maybe part of why it was so hard for me, um, is that my husband and I are both. I'm retired, shall I say, molecular biologists, and we deal with precision and accuracy. And, you know, these people in the hospital or hospital are telling you give him one unit for this many carbs. And if he goes below 70 Give him 15 grams, you know, that kind of thing? And I'm like, Okay, what if he's at 71? And they're like, nope. And like, what if what, you know, just questions like that. Yeah, question. Okay, what if this Nope, don't do it, then what can I do even 10 carbs? Nope, give them 15. And I'm just like, okay, and then at some point, I was like, I think back about it and I feel really kind of silly knowing what I knew now, but they didn't tell me any differently. They didn't tell me the why I guess I should say okay, but I was I would, I would say can you just tell us exactly how much for this or exactly how much for that and they're like No, you'll you'll figure it out and I'm like, but we just if we just know the exact number everything we can handle this and that may maybe it was part of it was like not being able to put your finger on it. You know

Scott Benner 17:14
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Isn't it interesting, right? There's so much information left out of that, like I understand the idea if you get low take 15 grams, because we don't want you to keep getting low and 15 should be enough. But then they don't talk about like what you just said like what if really 15 is not the answer. What is the answer? six grams? Or, you know, why can't I do something at a 75 blood sugar while it's falling? If I know it's gonna get lower, and it's because they're not there. And they don't know the they don't know any of the details of the pretend scenario you're imagining in the future. So they give you this sort of like, I don't know, like it's an emergency. It's an emergency like thing. It's like, yeah, in case of Baba, bah, pull this cord. But that's kind of how it feels.

Tina 21:56
Yeah, and they don't, they don't take into account that maybe he doesn't need as much insulin for this exact same thing as he needed yesterday. You know, they don't take it into account. And

Scott Benner 22:07
I just think like one more sentence, you know, like, but it might not always be like this, or you exactly. And just as the scenario dictates like this would be, it would be an amazing eye opener for people. And they wouldn't get stuck in these like this number, this happens if this situation that happens. And instead they'd be able to see what what's really big picture happening and make better decisions. And yet it's not talked about like that. And it should be I

Tina 22:42
actually at one point, I started, you know, briefly working on a program to present to them to them being my son's endocrinologist who he's the head of the system that that we're in. And I have to say, I love him. He's He's amazing, and very accommodating and supportive and everything. But he still, you know, he doesn't live with it. He doesn't live with it in his house. And but anyway, I was working on something to to maybe be, you know, the product of which to be something that they could give two new patients that said, this is where we're at now, you know, you're at step one. Now. When these things happen, we're going to teach you step two, when things happen there, we're going to teach you step three, you know, and then I don't know I got off that path.

Scott Benner 23:38
Yeah, you're done being mad about it, and you moved on to something else?

Tina 23:42
Well, I'm pretty sure it wouldn't come to fruition.

Scott Benner 23:44
Nobody was actually going to do anything with it. Yeah, yeah. No, no. Okay, so he's managing with syringes with pens. Do you get a CGM right away? Like how does all that work?

Tina 23:58
So they gave him pens, one unit pens, and we actually had two and his ratio was, I don't know, one to 25, something like that. And so we'd have to actually add carbs for every meal because we didn't want to take carbs away. We didn't want to say you can't eat as much as you're used to because you can't, you know, we you can't have the insulin for it or will give you too much insulin. So we found ourselves actually giving him more and more carbs to to make it so he could have one unit or two units. You know, it depends on what do you what he felt like. And then downstream, I finally asked the Endo, I said, Hey, I hear their half unit pens, how about you prescribe one of those for us? And he says I could do that, which really changed everything. And then so he was diagnosed in July, and we were offered Dexcom not in the hospital. It was discussed first and then like, he even like when we went back two days later to his office, he offered it to us. And we, you know, I was kind of like, trying to settle down trying to get a grip, you know? Yeah. And I delayed it a little bit, but I think he was on it. I think it was like an as two week appointment.

Scott Benner 25:20
Okay, we got on it. And that long ago. Is that G six? G six? Yeah. Right. So I see you jump in with a really good sensor. Already a G SIX sensors really good. So like, you didn't go chi five was like, they were still getting it? You don't I mean? So. Yeah, that's not bad. And, but only half unit, the need for half units still. So you said a very little bit of insulin? I imagine. So again, was he using a very little bit of insulin? Mostly?

Tina 25:54
Yes. Yeah. Yes. And we were, you know, talking to the office to the CDE, at least on the daily about changing his basil, and, you know, changing things. And then finally, one day, it was like, we don't need to call them which was pretty cool. Yeah, to realize that, you know,

Scott Benner 26:16
I remember that. That feeling like, oh, I guess I don't really need to call. I guess I do know what to do here. Like that first moment where you think, Oh, I might be able to figure this out. That's yeah, it's pretty. It's pretty excellent.

Tina 26:29
Yeah, her endo offered us a pump pretty right away, too. And I said, you know, not ready, not ready. And it honestly, it was like his just about six months, right? After six months. diversionary so you say that we did start on the pump. And you know, going from half a unit capability down to point o five is astounding.

Scott Benner 26:57
Yeah, that's a big deal, isn't it? What pump? Did you start with? Omni pod? Okay. And so when do you? I mean, cuz I'm assuming because your background, you were looking into the technology a little bit and, and the idea of like, wanting to be precise, like, I'm assuming is what gets you to the internet. Right? So what do you find first that, like, is it me? Is that like something else? Like, where do you start to dig in.

Tina 27:26
So you were in my back pocket from pretty much day one. Because a friend whose son is type one who's who's a little older than my son, she reached out and said, we'd like to come see you on the hospital. And we we decided we didn't want anybody to come see us. That's how freaked we were. And but she she stayed in touch. And she said, I have these recommendations. And she said, you know, the number one was to Juicebox Podcast. And I was like, what is that? And so I was intrigued. But I was really afraid of going on the internet or, you know, anywhere and starting to hear scary stories. And my heart can take that. And I was like, I just can't. So I did no research at all. And I didn't didn't start listening to the podcast for a little while. And it was it was a few weeks in, I finally was like, Okay, I'm ready to ready to start branching out ready to start learning more. And so I found what I what I felt was a safe book. And it very much was and I I started listening to the podcast. And I'm joined the Facebook group. And would you like me to elaborate?

Scott Benner 28:51
No, no, I liked that idea. Because I think, first of all, I have two thoughts. There's somebody right now, in that situation, who will start to listen to this podcast six months from now. Somebody's told them about it. And they think it's a good idea, but they're not going to do it. I'm learning very much that my adoption, the rate of adoption takes a long time for people like it's not people don't just go oh, wait, there's a podcast that helps. Great. I'll start listening right now, like some people do. But for the most part, it doesn't go that way. And that's the second thing I want to say is that I understand that. Like I make this podcast, I see everybody's feedback. I know how it helps them. And yet when I hear it, I think yeah, that doesn't make sense. Like why would I just start listening to a podcast because my kid was diagnosed with something, or because I turn up at the doctor and he's like, Hey, you have type one diabetes. Your first thoughts now, I should probably go find a podcast that gets some people's first thought but not most people and it's not sexy. Or, like, you know, some of these podcasts that are like all about like, Oh, we're gonna biohack you into being like Lean and like that kind of Yeah, that doesn't actually work for anybody could biohack that would be awesome. Yeah, by the way, like all that stuff that everybody wants to be true, but for the most part doesn't work for anyone. It but I understand why those are popular even and I understand why somebody could be easily drawn into it. I, I think it's a slog to get to this, I have to be honest with you. I don't know, if Arden was diagnosed, and somebody told me there was a podcast about diabetes, and it would help me, I don't think I would have listened to it either. So yeah,

Tina 30:33
I just wasn't, I just wasn't ready to take in more more really personal, personal slash objective information. It's like, I need the objective. I need the how to, how to keep them alive, how to help them thrive, how to make it work. And then once I got that down, down, haha. Once I felt, you know, like, Okay, I think I think we can make it through a day. Okay. You know, it's like, Okay, go ahead and add in. And, um, honestly, you're the years is that for first Pat podcasts that I've, that I started listening to have of any podcasts because I had checked out podcasts before. And I was like, Oh, they're so hard, like, hard to pick what podcast to listen to, and hard to know, you know, what to download and when to download and how much it's going to, you know, monopolize my phone and you know, things like that.

Scott Benner 31:36
I'm also very snobby about how people's voices sound. Like, I don't want to hear oh, yeah, like, nasally people talk to me. I think energy bothers me a lot. So, you know, I'm bad at that. There's a lot of reasons why I start to listen to something and then think, oh, no, this isn't for me.

Tina 31:55
Oh, yeah. I've bought a book on on on Audible a couple of times and started to listen, I'm like, I can't get it. And so I I got a refund.

Scott Benner 32:03
Yeah. Also, bad microphones, bad audio, like stuff like that. Like, I've gotten better, obviously, over the years. But even on day one. I didn't know what I was doing. I still overspent on a microphone. I thought it had sound good. Or like, what's the point? Like, I wish I would have bought this one first, if I'm being honest with you, but anyway, okay, so you find this you start to dig in? What is it you figure out first? And how long does it take you to think I want automated insulin delivery.

Tina 32:37
So honestly, the comfort of having people who are in the same boat you're in and hearing how how well that, you know, how they can live and keep going and smile and laugh and everything that was of such benefit to me. And, and always is, because community is everything with type one community is everything. And I tell I help a lot of people that are newly diagnosed or who have kids that are. And that's what I tell them to start with them, like community is everything. And I do start the baby steps, you know, and I always tell them about the podcast and and tell them about the Facebook group. And I'm like, it's, you know, it may be overwhelming at first. So you may, you know, may want to peek at it and not jump in or you may want to jump in. But you know, there are people that will help you there in the wee small hours of the morning, which, you know, you did me very, you know, pretty early on, when Reese got double dosed one night before bed, and this is in the in the very early days, you know, when we were fingerstick in and you're sticking? No, it was after after Dexcom. But, um, but yeah, sometimes I won't forget,

Scott Benner 33:59
I can't tell how many people I've had phone conversations with over the years, who I've only ever met that one time. I've never seen them again, but through like, you know, a confluence of circumstances, somebody points them to you online. And they reach out and say something that just doesn't seem like it's something you can manage, like typing back and forth. And the idea I took too much insulin story is pretty common. I've had more than my fair share of conversations with people were they're like, Hey, I don't know what to do right now. Like I'm this close to calling 911. And instead they're talking to like a stranger on the phone. And, you know, you're telling them like common sense things. I'm like, Look, first of all, I'm not a doctor and call 911 If you want to, like but you just injected this much insulin. You know, what's your carb ratio? Let's reverse engineer this math and see how much you'd have to eat for this just to be a really good Pre-Bolus You know, and yeah, and that is Usually what gets people through, but most of the time, you know, I mean, some people,

Tina 35:04
yeah, and my

Scott Benner 35:07
God, I'm sorry,

Tina 35:08
I've sorry. There, there were times also when I, you know, was up at night, trying to deal with it and just very lonely and I'm like, I'm gonna turn on the podcast because this is, you know, these are people who, you know, are in the same boat as I am, who can keep me company through the night. So there, there have been, you know, been times where you've kept me company. And we always appreciate that. But um, I'd say the first thing other, you know, after the great community, probably one of the first things was that you don't need to throw 15 grams at it. And I guess along with that, if you need more insulin, yeah, need more insulin,

Scott Benner 35:56
right? Yeah, it's a big step for people. Isn't it like that? You know, it seems so silly when you say it out loud. But you know, your blood sugar is high, you probably need more insulin. That's yeah. And

Tina 36:09
it's, and I, you know, sometimes when Reese is high, or, yeah, when he's high, I'll, I'll be like, Well, I'm gonna Bolus him for, say a one unit snack. And if he needs to snack, he'll get it. And if he doesn't need it, he won't get it. And I think if you think of it in that sort of way, it's a lot easier to give, you know, to go ahead and give another unit or however much he needs. And it's not like I go say, Hey, you want to snack? You might get her you might? I don't do that.

Scott Benner 36:38
I'm gonna give you some insight, and then we'll decide later if you're getting an ice cream. No, I do. I do. Sorry, Scott. No, is that from that idea of like when I tell that story about art and getting high at basketball? Is that where that comes from? When I say like, look, we used to show up at this thing. Sometimes her blood sugar would rise, sometimes it would fall. And we didn't know about adrenaline at that time. Like we were still figuring it all out. But you know, I couldn't show up and watch her blood sugar jumped to 220. So I started Bolus and I started Pre-Bolus thing what I thought the rise was going to be, but then my wife was like, Well, what if it doesn't go up? It didn't go up last week. And I said, Well, in that case, I'll just give her enough insulin that we're basically Pre-Bolus and juicebox. And if it doesn't go up, then she can drink the juice to counteract the insulin. Is that where that hole comes from? For? You

Tina 37:25
know? I don't know. I do. I think I do remember that. Um, but I remember trying, you know, wrestling with how much, you know, this is a lot of insulin to give him but if I just changed my thought process of it, as you know, being Bolus for a snack, then, and just wait. Yeah, because he's not in a range where I would give him a snack. If I just wait for him to get there. He might have it and then I started actually extrapolating. Okay, so when he was first on the pump, or when he was on the pump, just the pump. His dia I think was two hours. And so I'd be like, okay, at one hour, I know from experience, this is how much insulin we really have to deal with. So I would see how, how fast he would start coming down. And if it took a while for him to start, I would know we're dealing with a smaller snack if we're dealing with snack at all, you know, like that. And that's the kind of thing where the, the scientist in me engages so maybe over fully?

Scott Benner 38:35
Well, so what? When did when do you find out about like DIY looping? And how long does it take you to make your way into understanding it and actually doing it.

Tina 38:47
So pretty well run after Rhys was diagnosed I had a lot of people probably more than a dozen people say, I want to come talk to you. Um, you know, I have type one somebody in my family has type one or I want to introduce you to somebody that I know who has a kid with type one. And so it was actually wonderful and so overwhelming. And you know, the people that I was the closest to they're the ones that you know, that of course came first and not everybody got you know, needed to come but I remember one of them told me told me a few things that I went to downstream and checked out and I think that one of them was was dry looping and at first I was like there is no way and in fact I remember telling Reese's No, there was no way I would ever do that. It's not FDA approved. It's you know, I don't know who these people are, you know the whole

Scott Benner 39:47
Yeah. Oh, how can read How can I possibly isn't a boy reactions to that. That news that yeah, online?

Tina 39:57
Yes, I for a long time I was you know for Do long I guess I was because I wasn't sleeping, I was like, I am not. And then all of a sudden, I'm like, we're gonna build loop. So you build it, build lead. And say, here's the computer, here are the directions build loop. And so he did. And we got, we got Rhys up and running and close the loop on the night of the second day. And, you know, I was up late watching it, and I was like, I'm gonna close this, I'm gonna see what happens. I'm gonna go to sleep. And it wasn't like, you know, close it, go to sleep. It was close it watch it for a while, go to sleep. And I got the best night's sleep I had had and months. And, you know, that's, that's how we launched with it.

Scott Benner 40:47
Yeah. Hey, the sleep will sell your for sure. On any, on any of the algorithms at all? Absolutely. So you. So did you get involved in it, then? Like, were you helping on like loot pages on Facebook? And like, did you get involved? Or did you stay on the outskirts of it?

Tina 41:05
So I pretty, you know, the as you know, the documentation for loop is vast, and loop docs. And it says, do not print this out, read it online, because it changes frequently. So I printed the whole thing out, literally, it's a notebook this thick. Because reading online for me is like, like, I might get lost, I'm not sure where to go back to, you know, I can easily mark pages easier. And keep in mind that if I really want to know something, you know, if something's critical, go look online, and whatnot. So I printed it out. And I read the docs, and he read the docs and found the looped Facebook group. And went went on there and did lots of reading and some some question asking and I saw on on somebody's post, there was an answer about how to how to Bolus for meals. That was very different from, you know, what, what I was used to doing at all, I was used to bolusing for carbs, and then later bolusing for fat and protein on the rise. And so the person that wrote, you know, answered this question on the post, I said, Hey, would you mind if I asked you some questions? And she said, Sure. So we went private. And I asked her some questions, and she helped me, you know, figure out how to how to do things the way she was saying and told me why she did them that way. And, you know, and she spent a good bit of time that day with me, which I was not expecting. And then the next the next morning, I said, Hey, this is how the night went. I said we didn't want it if I ask you a couple more questions, and she said, I'm gonna stay with you. So she did. And, um, she actually is on my admin team for loop and learn. And somehow down the way another person who's on my admin of of loop and learn, asked me if I wanted to help with some things there. And then eventually, I was invited to become a moderator on the page. Gotcha. That's great. In the group questions, it's

Scott Benner 43:11
how it works. Like somebody has to stay behind and help somebody else. You know, like most people go on, but some people stay and it's lovely. And so you had that experience, somebody helped you and you thought, wow, hang around and help somebody else?

Tina 43:24
Yeah, I've always been, you know, like, if somebody needs help you help them. Period. Yeah. Unless, you know, unless it causes harm to you or somebody that you know, somebody else. But generally, if somebody needs help you help them so I, I really, am you know, about helping people in every way that I possibly can. And what I am not a code person I do I have made some suggestions that have become some code, which I'm very happy about and and, but as for the coding itself, no clip, give

Scott Benner 44:00
me an example of something you suggested that ended up in the in the app.

Tina 44:05
Um, it's not in the app. It's a it's a what do you call it? A patch slash customization is one and this is one I wasn't the only person that suggested it, but I kind of pushed that you know. And it's the the now bar that used to be part of Luke the bar that is like where you are now. And here's, you know, behind it, the history and in front of it's the future. And so we kind of, you know, got got a little ruckus going about that again, and the person who writes or who has historically written most of the code for loop, didn't want it in there. And so wouldn't

Scott Benner 44:54
you froze. Tina, you are frozen. Frozen for It was in frozen. Tina, you frozen? You were frozen for a while. I don't know if you hear me. Yeah, he didn't want it in there. Ah. Can you hear me out? Yeah. So go back to the Yeah, the code

Tina 45:22
didn't want it in there. So became a patch. Oh, okay.

Scott Benner 45:25
But so people? Oh, I mean, I have it. I think it's nice.

Tina 45:31
Yeah, I was like, you know, constantly like holding the phone at an angle, like trying to see exactly where we are precision, accuracy. But like, it was just really valuable on he didn't want it. And I'm like, Why? Why is it that big of a deal? That you won't put it back in there. But we got it back. Um, so. So anyway, yeah, I, I enjoyed being a moderator and loot. And I do a lot of editing. And, and I was organizing the editing team for awhile, and we have kind of a big, big team, but not very many on the team actually do anything. So we have so

Scott Benner 46:16
I have a lot of experience with that. It's hard to like, there's never a shortage of people who say they want to help. But the people who follow through are lesser than the those who yell I want to help like I have, obviously, my I have a fairly robust Facebook group. I think that's a polite way to say, I don't want to say that I have the most active and valuable diabetes Facebook group that exists, but I think I do, but that's neither here nor there. But it's there's so many people in it and so many posts. Like there's two options. Either you get people to help you, or you just go wild west and you tell people like look, I'll do what I can do. But for the most part, you're on your own, which is how I grew it honestly, like I was not a very active like I don't I'm not into telling people how to be.

Tina 47:09
I remember when people were offering to help and you're like, Nope, this is a solo thing. And then all of a sudden, one day, turn the corner or hit the wall or something.

Scott Benner 47:18
I don't know what I hit, I might, I might have turned the wall and hit the corner. But I was just like, wow, this is so big. It does like I haven't looked, it changes so quickly, that I haven't looked in a little while. But my best guess is that it does 110 On average posts every day. Like I think that's about where it's at. Wow. Yeah, that's a lot to keep up with. Yeah, and you can't honestly, like you just you can try, and you can do your best etc. But it's not something that you can just, I don't know, you just can't stay on top of it the way that I think people would, would expect that you should, except I've learned that that's not really important. Like you don't have to moderate it like, quote unquote, the way people think you do. Mostly people are decent. And they they do the right thing for the most part. Yeah. And

Tina 48:11
they drag you in when they need to. And I know I've done that before. Yeah, you need to see this.

Scott Benner 48:17
Once in a while I get the like, hey, come over here. But I'm looking right now. There's just under 40,000. Members. Wow. In the last month, 35 36,000 of them were active. And the average day is about 100 posts can go up to 125. And every once in a while it goes down to 80. But only a couple of times a month. So there's a slow days. Yeah, the slow days, there's ad posts, add new posts. Yeah, there's no

Tina 48:49
way you can keep up with that. And I don't I mean, I I can't keep up with the posts and loop and learn. I don't I don't try. I mean, I don't try on the daily to keep up with them. I do like to go. I do like to keep up with them. But I'm so busy with other things too, that that that's hard for me. And I'm not the person either. That is like this is how you This is how you make it all work. That's not me. I do have insight and cool things to share sometimes. But um, but yeah, um, there are people on there, though, that I don't know how they do it. They see, you know, they basically see everything they are able to answer the questions. They have the knowledge, they have the ability to combat it.

Scott Benner 49:32
It's astonishing, like it really is, like between the new so it's a private group, so you have to answer questions to get in. But there are some times where the algorithm holds you up. And then you have to be like hand approved by somebody. I have to hand approve 30 accounts a day. And then eventually, you know, there's going to be a scammer every three months or every three weeks and you got to go in there and like stop somebody from scamming somebody out of Money or like something like that. And then once in a while somebody goes crazy. Like last night somebody went crazy. And I was like, where did that even come from? Was like, how did that happen? And it was, it was crazy. It was, this person had gotten not in my group and a different group, they had gotten ripped off. Somebody told them, they were selling supplies, they gave him some money in the person wasn't even a person, it was just a scammy account, they took their money and didn't give them anything. So they went around to try to tell people about this, which is I thought, great, you know, look out for these accounts. Like I got scammed by them. Another person comes in and says like, hey, like, you know, I, you gotta be careful. Like, it was like that kind of thing. And then those two people didn't jive. And then somehow these two people who completely agreed on trying to help people started fighting with each other. And I was, and it doesn't happen often. Like I know, people probably imagine that. That's what Facebook is constantly. I'm very proud of my group. Like it does not devolve like that. Hardly ever. But now I'm watching them fight with each other. And I'm like, What is going on now? And I'm working like, it's 10 o'clock at night. I'm making a podcast. I'm building web pages for the podcast, I'm answering emails, I've got like 30 people that want to come on the show. I'm trying to get back to them. People want to buy ads. I'm like all by myself. And I'm like you stop arguing. It's funny.

Tina 51:25
It's easy to get provoked. It really is. I know, there have been a couple of times where I've been like, an answer to somebody and I'm like, do I want that out there? No, no, go back and delete it.

Scott Benner 51:36
Yeah. Well, anyway, like it just like it's overall. And I don't even want to say this. Like, like, I'm like, oh, overall, don't it's good. Like, exceedingly overall, it's amazing. It's really good. If you're a background person looking at it, like the little things that pop up are just like, oh, no, no, no, no, no, no, don't do this. Like not now. Like why now? Or like, you know, I'm in the middle of like, trying to bring my kid home from school or something. And I've got like three notes like, Hey, you got to look at this post. And I'm like, leave me. Leave me out. Anyway, yeah. But it's, it's a really valuable way to learn, to ask questions to learn. I've never seen lurking and be more valuable. Like I had a woman pop up the other day. And she's, she's she sent me a note. She's like, I gotta tell you, I just, I've been in this group for three years. She's like, it's helped me immensely. I've never once posted or answered anybody. And I just like I I'm a faceless avatar. But I just wanted to tell you how like, helpful this was for me, like a person who's really engaged in it, but you would have no way of knowing. Oh, well, it's it's pretty pretty much almost Yeah, it's crazy. Yeah, ghost. Yeah. So okay, so now you're looping. And you find looping to be valuable. It's working for Reese. Like, you're happy with it? Yeah, slide, you don't use loop anymore.

Tina 52:58
Well, we are currently looping Oh, okay. But we've, we've gone back and forth a little bit, we started using Omni pod five back in July of last summer, use it for two months. And then back to loop. Because there were things about Omnipod five that well, I should say about loop that I missed and things about Omnipod five that were bothering me, such as I was not used to the lack of being able to control you know, adjust things. And the also, I really like being able to Bolus from a watch, which is really nice. And, you know, several other things. But also, I did find that the time that I spent dealing with data, trying to trying to get settings right, trying to understand, um, drastically was was drastically reduced when I when we were using oh, five. And, and I I valued that highly. And so yeah, we went back to loop. And then in November, I believe no later it was in October, somebody asked me about sharing information about oh five so that he could get he's thinking about putting his daughter on it. And so I did and then I said hey, do you want us to hop back over on to oh five and go through it with you? And so I did that. And he's he's learned vast amount about it, you know, way beyond what what I started and he you know, he's helped me quite a bit and he's helped a lot of your listeners and, and learning learning to be less controlling with with the management that's a huge gift of Have Omnipod five, yeah. Um, and, and, and I just really appreciate that. And I took that when, when we transferred back to loop again and December, I took that back and I was trying to tinker things and loosen up things to make it so that we didn't need to be as precise. And I feel like I did a I did a really good job of that. Um, and part of part of the reason that we hopped back over. One of the reasons was that we were having trouble with lows on on the pot five, okay. And, and I was like, I just had I raised the target up, how to restart it, had I done some of those things. back then. I could have overcome that. But, but that's not what I did. So then, honestly, we made some videos about Omni pod five. And we we've had a lot of discussion about between four of us. And in in January, we had a ski trip coming up my family did and I said I'm gonna we're going to start oh, five again, and I'm going to start it at a very reduced basil, and see what happens. Put him on the ski slope. So we and you know, part of the draw is that the system runs magnificently. Without, you know, needing to have your phone near it or needing to have the controller near it. Right, that's, you know, I am. So we've used it for a total of six months. And in the time that we've used it, we've had we've had two times on it came disconnected. Yeah, twice. That's amazing. Right? And when Yeah, when I couldn't find numbers on my phone, I go look on, you know, on on the controller, and there would be numbers. Yeah. So it's astounding, and its reliability there. But yeah, we tried to try to back again in January and stayed on it for another three months. And honestly, I think we ran out of pot. So I switch back over to loot. And, um, and we've been doing that since April,

Scott Benner 57:22
where are you going to land, do you think we'll see that

Tina 57:25
that used to really, you know, eat at me, I was like, I need to make a choice. I've got one foot on the boat and one foot on the shore and I need to make a choice. But honestly, they do they both do such a good job. depending on you know, the time you want to put in the needs that you have. Um, I just, I'm just I feel grateful that we're able to use both. And, um, I also have no problem with tinkering with settings, just like, let's see how this works. It's not like, Oh, we're gonna make sure I do the exact right thing. And I keep him down and range. I don't like it when he's out of range. But I also know how to fix that. And I also know how to tell if we're heading in the wrong direction. You know, so but with I was I was actually quite tickled with oh five, and, and what I feel was my growth and understanding of it. So we started him with the low Basal when we went skiing, and that was a complete dumpster fire day. Because we lost Dexcom about an hour into skiing. And then when when we got a new one up and running, it was 200 high. And a lot of times it floats back down, you know and and lands for you nicely, and we weren't so we were afraid to calibrate it. And it was going from 200 High to 100 high and back and forth. So we just pretty much left him high the whole time. And then I was like, Okay, I need to get this thing's right on here. And because downstream, what I was seeing was that the Max Max insulin bar, you know, the little orange bar was appearing. And I was like, okay, the way to the way to change this is to restart it with higher basil. And so I so I did and it just solved the problem and everything settled out.

Scott Benner 59:33
So when you your first idea to outsmart it was we're going to be doing activity so I'll restart the system with a lower Basal rate, but that wasn't enough. And so you went back to the regular Basal rate that you should have used or you got more aggressive or was it somewhere in between?

Tina 59:52
What I did so so that the point was to keep him from going low. Make it so that it's more aggressive. But raise the so it'll hit harder, but raise the target so that he has plenty of time, plenty of space to if it hits too hard to land, because one of the issues with him is he goes from very sensitive to not very sensitive, and he flips. And is that something you hear about with boys?

Scott Benner 1:00:28
A lot. I mean, in my, in my heart, I would wonder if that wasn't like activity related.

Tina 1:00:35
We see the activity related. needs change. Yeah, definitely.

Scott Benner 1:00:41
What about around growth?

Tina 1:00:44
Yep. And he, he's been growing like a maniac lately. And that was not something that we saw. You know, we didn't see that for a long time. And then we started seeing that, right.

Scott Benner 1:00:56
Yeah, I mean, somewhere between growth activity. Eating like this is eating cycled differently. Does he eat heavier carbs sometimes than others? That kind of stuff?

Tina 1:01:09
It's pretty random. Yeah, that could be honestly, he, you know, he's he's a regular diet eater. Yeah. And we never even before. Before diabetes, we didn't do a lot of cake. And, you know, we did on special days, it wasn't like everyday, you're gonna cookie, that sort of thing. But he also, you know, he needs plenty of that. But there are times like, for example, he's swim. And he has swim team practice at 330 these days. So I want to get him his iob insulin on board reduced by the time it's time for that. So I don't feed him or I try not to have them eat high protein, high fat for lunch, I try to push that more towards breakfast on these days. And then at lunch, make it so it's more carby. So the insulin is out of his system. He doesn't have to have that next bullet. Right.

Scott Benner 1:02:10
Right. That's great. I mean, that's, I think, like most of like successful activity is not having insulin on board while you're during the activity. Like, you know, it's just it's it's the easiest way to avoid lows. I think that and yeah, you you start to move meals around a little bit. So that, you know, to that act of insulin isn't there during the day or whatever you're doing. What, what kind of sports does he play? Yeah,

Tina 1:02:36
he's a swimmer. Just just so he's he's a your realm. swimmer. Yeah.

Scott Benner 1:02:40
So that's a lot of effort. And a lot of Yeah, excellent. Yeah. I would imagine you can get pretty low while you're serving. And then yeah,

Tina 1:02:48
and we've we've seen a man with more insulin on board, I like to send him one and with about half a unit, or less, and if it's old, that's great. Yeah, um, but we sent a man with a lot more and with it being fresher. But it's, and some days we find we can handle that better than others. But honestly, the fact that he that we can't see his numbers when he's in the pool, that's what usually sure makes it the hardest,

Scott Benner 1:03:19
because Bluetooth doesn't work through water.

Tina 1:03:22
Yeah, and actually, we did get, we put the the pod and the transmitter, the sensor next to each other a few times.

Scott Benner 1:03:32
And the rhombi. Pod five kept working. And it worked

Tina 1:03:35
in the pool. Yeah, so that's not reliable. Right. Right. So

Scott Benner 1:03:39
yeah, I don't know if people understand or listening that on the pod five, like if you thinking about loop, loop, the algorithm lives in an app on your phone. And so the brain is in the phone, and then it has to talk to the pod. The Omni pod five, which is the, you know, was the system made by the company, the algorithm actually lives on the circuit board inside of the pod. So if you don't need to be anywhere near your phone, because the sensor, the G right now, just G six is talking directly to the pod. So even if you don't see anything on a screen somewhere, it's still talking back and forth. And you're saying that even though he was in the water, you got some, some connectivity out of that. That's pretty cool.

Tina 1:04:20
Right? But it's, I've thought about actually making some kind of a bubble thing that where you can put them both together and put adhesive around it. And, you know, try and keep them in contact without water between them when he's in the pool. But you know,

Scott Benner 1:04:38
yeah, no, I think you got a little too much free time. You might want to find a hobby.

Tina 1:04:43
Yeah, right. I have free time.

Scott Benner 1:04:47
You gotta find a different hobbies what I'm saying. Yeah, so just I appreciate all this. Like we're coming up on an hour. I want to make sure we're not missing anything. Is there anything we are not having talked about so far that you wanted to make sure we did. Uh,

Tina 1:05:01
um, let's see. I think we're pretty good. i The point is, I guess between Omnipod five and loop is, I just find them both to be incredibly valuable. I find I'm, you know, part of the thing with Loop Two is since I am doing the service that I do via loop and learn it, it kind of benefits me to be in that realm, which I fumbled a little bit with my oh, five speak, I think. And that's probably because I'm not as in that realm right now. But, um, and as far as the loop Aman goes, Omnipod. Five is just, you know, I think it's a great, great thing. Yeah. And, you know, the, the Chief Medical Officer of insolate, has told us and told me personally more than once that if it weren't for the DIY community, insolate would be nowhere near where they are on the pod five wouldn't be what it is, you know, and she has said, Thank you, thank you so much. And so I feel like, you know, aside from all the other, you know, reasons to do it to keep pushing with DIY, even though there are some really good FDA approved options, I feel like, it's really great to keep pushing, because innovation is constant, there are some new things coming up in the loop realm that are going to be really helpful to people.

Scott Benner 1:06:38
Tell me about,

Tina 1:06:40
well, actually, there's a new there is a section, it's on the loop and learn website, it's not in the docs, because it's looping, learn specific, but it's a it's a development, little development section in the customizations section of the build, section. And there are three new things in there. There's, I get this, I get this wrong, but it's glucose. Um, let me get in my app, and I'll see glucose base partial application factor. And that allows and that one has been pushed to dev actually, to the dev branch, that one allows, when you're in auto Bolus, it starts ramping up the amount of starts at a lower amount of insulin Bolus. And then it ramps it up as your glucose rises, instead of it being a constant 40%. Or the constant 17%, that Temp Basal offer offers. There's that one. And then another one that's been pushed to Dev is the integral retrospective correction, which actually uses more information, looking back as to what you know what happened. And it will affect what it does from there with that interesting. And then there's also one that's called profiles, which I'm super excited about this one, it allows you to set up a different profile, or different profiles, just like right now, you probably have one profile set up on the phone. But you can duplicate it, and then change some things and then say this is to you know, this one is the main one, this is Tuesday, because Tuesday is you know, this activity that I need to change things for and and then you can just choose to your profile, when you need it nice instead of it's like it runs constantly, instead of setting on an override.

Scott Benner 1:08:46
Wow, that's very cool. I love that. Yeah. When do you think we see all that?

Tina 1:08:51
Well, the first thing that I told you about have just been pushed into dev, I think on the 23rd. And then I'm not sure about this one. But I think once people are trying to in dev a lot. There are a lot of people that are using these already. And when they see it be stable, and Dev and see that it's what they want. They'll push it to the main loop pool.

Scott Benner 1:09:13
So that'll happen in loop three. Yes, yeah.

Tina 1:09:17
Well, I say yes. There are things that happen that make a leap from Loop Two to loop three, and there will be something that makes a leap from loop three to loop four is probably not this, but I can't be sure. Yeah,

Scott Benner 1:09:30
it's interesting. All right, cool. Well, yeah, way to figure out a way to timestamp your episode to get it moved up in the in the player Good job. Got yourself out way, way ahead. That's a that's very exciting news. I can see the value top my head for the different profiles 100% and the ramping up is a big deal and also being retrospective. I mean, all this is good information, right because you make I'm assuming the retrospective apart is, it's going to be able to say, hey, two hours ago, you made a pretty big Bolus. And you know, you said there were 80 carbs here, but we're still 200. So I can't just assume this is all going to be okay. I gotta be more aggressive. Is that the idea of that?

Tina 1:10:14
It is expected to be more? Oh, well, I haven't tested it yet. But those that those that have say, Yes, it does do a better job with that. And if your settings are right, it could be more aggressive than you want. And right now I have the the glucose. It's funny, I remembered the name is an acronym, based on another acronym, an acronym that I'm familiar with. And then they changed the acronym on me. So I stumble, but it's glucose based partial application factor. And that one we started using on Saturday or Friday. And I'm wanting to see what that does. Yeah. Before I apply the next one.

Scott Benner 1:11:02
Good. I can't wait. I love it. I have people who helped me, I am going to tell you I'm inept at loop, for the most part, like the back end stuff, like the setting it up and the, you know, that stuff. I'm, I don't know, my brain doesn't just work that way. But people are always very kind and helped me.

Tina 1:11:20
The kindness of a community, the people in the community is, I mean, I've never seen anything like it. I've never seen anything like it. And I've never had occasion and need anything. But truly, you know, people in this community are just astoundingly giving. And

Scott Benner 1:11:40
I agree. Yeah, I can't tell you I'm in that includes you. Oh, stop. I mean, listen, I deserve a little help I get the word out about loot pretty well. But I, it's just not like, I'm a good example of my brain doesn't wrap around it. If like if it wasn't for people, I mean, let's be more honest, if it wasn't for the podcast, then people would probably not be as interested in helping, but I bet you I still could find somebody to help. I'm just saying like my brain, like, as many times like, Mike's a great example. Mike's been helping me for a year, right with. And he tells me something and every time he tells me, I think you know what, I'm going to remember this so that I don't have to bother Mike again. And then it comes up and I'm I'm like in a blank panic. I'm like, I don't know how to do this. It's yeah, I don't know what's wrong with how my brain works. But it doesn't Well,

Tina 1:12:35
it's funny because I can you know, we, we have a new, a new way to build a loop that doesn't involve a Mac, we have a couple of new ways to do it. One of which Mike just built, you know, made and dropped on us one time, and that was the remote build amazing. But the the Xcode build on the Mac has been refined so much that it's it's gotten very easy to do. I've built, you know, I don't build super often. But I got so I can build it without help. And I can help other people do it. Which is awesome for me because I want to help people. Yeah, and, um, but the, the, the new browser build that you do on GitHub, which you can do on a PC. I look at I've actually read the documentation for that numerous times. I've edited it, I've you know, the I've made changes to it that that help it be more readable and usable and stuff. I can't do it. But like I I've tried, and I'm like it's just, there's something missing. One of

Scott Benner 1:13:45
the astounding things that's happened in the last year is that there was a like, the app needs to be rebuilt. And Arden was at school 700 miles from here. And Mike was like, yeah, we'll just do this, this this click here. That'll send her an email. Then she just clicks on the email and it just builds the app on her phone. And I'm like, Okay,

Tina 1:14:06
sounds magical. And Magic Mike. Yeah.

Scott Benner 1:14:08
Like I'm like, that's, I'm sure he would really love that. And, and I'm like, you know it now I actually have an episode with Mike recorded. I'm gonna put yours out first and then I'm gonna put his out and I'm gonna call his Magic Mike. Tell him just to mess with him.

Unknown Speaker 1:14:26
And oh, get in trouble. Yeah, but

Scott Benner 1:14:29
I swear to you as it's happening and like, that's amazing. And then we went to do it again. And I just, I'm like, I know there's a way to do it. I don't remember it. And I always feel like he's looking at me like, you idiot. Like, oh, no, but he's Mike is so lovely. Yeah, I such

Tina 1:14:45
a kind just, he's such a kind con person in such a cool person. And, um, and patient and he you know, he has a degree in Computer stuff. And that's one of his gifts, you know? Yeah. Wonderful. I have I have another another guy who will remind you of Mike a bit who I'm going to send your way to, um, that I think you'll really like.

Scott Benner 1:15:14
Okay, wonderful. I love these conversations. So I appreciate this one to you today and the one that I had with Mike and God who like just have on recently that did such a good job of talking about moving from loop to Omni pod five. John FOSS on John. Yeah, well, his episodes terrific.

Tina 1:15:32
It is terrific. Yeah. He's, he's like a savant savant stage.

Scott Benner 1:15:37
I mean, the way he talks about it is just very clear to me. And yeah, that's a skill in itself, right? To be talking about something so technical and to make it feel accessible while you're talking about it's really, really a skill.

Tina 1:15:53
Yeah. And he, he's, um, his daughter is mostly managing on her own now. And that's what we're moving to we've, you know, Reese's 13, as I said, and so I'm not, you know, not pushing for him to be independent anytime real soon, but we're working towards that.

Scott Benner 1:16:16
Oh, I'll tell you right now that aren't artists, like, she's independent with it. You know, like, I'll help her sometimes. Or I'll send her a note. I'll be like, hey, you need to, like, you know, you gotta be more aggressive here. Whatever you did two hours ago didn't work or like that kind of stuff. But like she, she handles it. Like, even the other day. She's home now. And I walked into her room, and I was like, hey, you need to she's like, I got I got it. I'm like, okay. That's cool. That's really cool. That's great. So I bet you're

Tina 1:16:45
glad to have her home.

Scott Benner 1:16:46
I really am. I would like it if everybody came home, and we just pretended it was 10 years ago. We lived here forever, but I don't think that's gonna happen. So that's how I feel to get something. Okay. All right, Tina, thank you so much for doing this with me. I really appreciate it.

A huge thank you to Tina for coming on today and sharing her story with us and talking so much about loop and algorithms. I also want to thank cozy Earth for being a great sponsor this year, they're still with us because you guys are going to cozy earth.com and using the offer code juicebox when you make a purchase, so thanks to them. And thanks to you. Let's also thank the place where Arden gets her Dexcom and Omni pod supplies from us med go to us med.com forward slash juice box or call 888-721-1514 Get your free benefits check today. And once you know everything's good to go, you can get your supplies the same way we do from us summit.

The after dark series from the Juicebox Podcast is the only place to hear the stories that no one else talks about. From smoking weed to drinking with type one perspectives from both male and females about having sex with diabetes. We talk about depression, self harm, eating disorders, mental illness, heroin addiction, use of psychedelics, living with bipolar, being a child of divorce, and honestly so much more. I can't list them all, but you can by going to juicebox podcast.com. Going to the top and clicking on after dark. There you'll see episode 807 called one thing after another episode 825 California sober. Other after dark episodes include unsupported survivor's guilt, space musician, dead frogs, these titles will make you say what is this about? And then when you listen, you'll think that was crazy. juicebox podcast.com Find the after dark series. It's fantastic. If you are a loved one has been diagnosed with type one diabetes. The bold beginnings series from the Juicebox Podcast is a terrific place to begin listening. In this series, Jenny Smith and I will go over the questions most often asked at the beginning of type one. Jenny is a certified diabetes care and education specialist who is also a registered and licensed dietitian and Jenny has had type one diabetes for 35 years. My name is Scott Benner and I am the father of a child who has type one diabetes. Our daughter Arden was diagnosed in 2006 at the age of two. I believe that at the core of diabetes management, understanding how insulin works, and how food and other variables impact your system is of the utmost importance. The bold beginning series will lead you down the path of understanding. This series is made up of 24 episodes, and it begins at episode 690. Get your podcasts or audio player. I'll list those episodes at the end of this. To listen, you can go to juicebox podcast.com. Go up to the menu at the top and choose bold beginnings. Or go into any audio app like Apple podcasts, or Spotify. And then find the episodes that correspond with the series. Those lists again, are at Juicebox Podcast up in the menu or if you're in the private Facebook group. In the featured tab. The private Facebook group has over 40,000 members. There are conversations happening right now and 24 hours a day that you'd be incredibly interested in. So don't wait. So don't wait. Check out the bold beginning series today and get started on your journey. Episode 698 defines the bold beginning series 702, honeymooning 706 adult diagnosis 711 and 712 go over diabetes terminologies in Episode 715 We talked about fear of insulin in 719 the 1515 rule, Episode 723 long acting insulin 727 target range 731 food choices 735 Pre-Bolus 739 carbs 743 stacking 747 flexibility in Episode 751 We discussed school in Episode 755 Exercise 759 guilt, fears hope and expectations. In episode 763 of the bold beginning series. We talk about community 772 journaling 776 technology and medical supplies. Episode 780 Treating low blood glucose episode 784 dealing with insurance 788 talking to your family and episode 805 illness and ketone management. Check it out. It will change your life. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast


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#965 Bumper Bowling

Scott Benner

Anastasia and her daughter have type 1 diabetes.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon MusicGoogle Play/Android  -  Radio PublicAmazon Alexa or wherever they get audio.

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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 friends and welcome to episode 965 of the Juicebox Podcast.

On today's podcast I'll be speaking with Anastasia she has type one diabetes and sodas her daughter they were actually diagnosed pretty close to each other. A lot of today's conversation wraps around looping and other algorithm based pumps. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin. If you'd like to save 40% off of your entire order, you can do that at cozy earth.com with the offer code juice box, you can get a free one year supply of vitamin D and five free travel packs with your first order at drink ag one.com forward slash juice box end and my friends check this out. There is an entire group on Facebook 40,000 People type one's type twos Lada everybody, caregivers people living with at Juicebox Podcast type one diabetes on Facebook, it's a private group, you're going to love it. This episode of The Juicebox Podcast is sponsored by Dexcom, makers of the Dexcom G seven continuous glucose monitor, head now to dexcom.com. Forward slash juice box to get started or to find out more. today's podcast is also sponsored by touched by type one, and I'm going to be at their next big event coming in September. Check it out at touched by type one.org.

Anastasia 1:59
Hi, Scott. My name is Anastasia I have type one diabetes. I feel like I'm in a meeting. I have type one diabetes, and I have a daughter with type one diabetes. She's 19 years old. And she got it at the age of five. And I got it one year later.

Scott Benner 2:23
Oh, so your daughter went first? How old? How old? were you when you were diagnosed?

Anastasia 2:30
Hello was I like sort of 3938 30 night? Yeah, definitely not a juvenile.

Scott Benner 2:39
39 So Right. She was five. But how? How long ago was that? No, she's 19 I can do it.

Anastasia 2:48
You can do it. Yeah.

Scott Benner 2:49

  1. How long to carry the one. That's eight. Zero as eight years ago. No, no, no, I'm getting it.

Anastasia 3:00
Bad man. It's like Tory teammates. 2018 years.

Scott Benner 3:06
Yeah, I didn't finish my equation. My goes into my goes into his like, 35% and I thought oh, I'll just jump ahead. But okay, so 2008 She's diagnosed the next year too. That's fine. You're diagnosed? You got it. Anyone else in the family? Nope. No. Well, I

Anastasia 3:23
have nobody with diabetes. I have a son who's 21. And I have a very nice husband

Scott Benner 3:30
was very

Anastasia 3:33
just like him a lot. Recently empty nesters. And we're having fun. So I find

Scott Benner 3:40
Oh, I see you're the foreign. This has rekindled?

Anastasia 3:43
Yes. Yes. Although I never enkindled but yeah, that's that's how it's going.

Scott Benner 3:49
That's lovely. I have somebody in the neighborhood who pushed it. A lot of kids through life. And then like the last one left and the husband just went with it. It looked like

Anastasia 4:04
Yeah, I think that's pretty common. So we dodged that bullet.

Scott Benner 4:08
Your story. Your story is much nicer. Or they're paid do me a favor. The microphone that's on the cable, like try to keep it away from hair or like lapels or things like that. Got it. Yeah.

Anastasia 4:24
Are you picturing me in a big 1970s lapel?

Scott Benner 4:27
No, I was thinking more of like a powdered wig and a big fluffy front and now it just wouldn't touch something that scrapes that's all got it. Got it. Okay, so it's interesting so there's four of you in the family you obviously made it a you know a fair amount in to your life. Daughters five is there any other autoimmune stuff in your family line?

Anastasia 4:51
There is not and but now I have Kashi motos look at you. Yeah, yeah. So that arrived.

Scott Benner 4:58
Hello. How'd it How long after the diabetes?

Anastasia 5:03
Do you know I limped along with that? I think for a couple of decades, I can remember getting a blood test in my 20s. I don't I can't even imagine why. But seeing that, I don't know anything about this stuff, but it was like auto or antibodies, thyroid antibody. And I remember it was like, I'm fully making this up. The range should be between five and 15. And mine was like, 380. And I remember asking, like, what is this crazy out of range? Rep, like, what does this have to do with anything? And they're like, Oh, nothing, it's fine. Oh.

Scott Benner 5:35
Where are you in an alley behind a Dunkin Donuts? When this?

Anastasia 5:38
Yeah, no, I mean, I, you know, I went through I had two kids, I've had good medical care, I think, you know, doctors used to look at that, that and that probably it was like, there are no entire episodes on this. But like, probably that one most generic marker was like, Okay, enough for them to just say next.

Scott Benner 5:56
Yeah. In range. It looked to them. Right,

Anastasia 5:59
right. In bad range, but in reach. Yeah. So I mean, my diagnosis of Hashimotos, I had to go through like a Chinese medicine person, I couldn't function. But I thought, well, I'm tired. And my kid has diabetes, and I have diabetes, and you can always explain away symptoms.

Scott Benner 6:17
At this stage, I feel like this is going to be fun. You went to someone for a Chinese based metal medical idea or an actual Chinese person?

Anastasia 6:29
Well, she is actually from Romania, and she has many degrees in Chinese medicine and sort of acupuncture and all of that stuff. But let's just say I took the naturopathic route to somebody saying to me, hold on, this is what's wrong with you. And then she linked me to a general practitioner who took the right blood test, but if not for her, I would never, it's not like she's medicating me. I'm on like, you know, genetical Synthroid. If not for her, I wonder how long, normal doctors would say, Yeah, that's fine. Good enough.

Scott Benner 7:02
So you found a Romanian person practicing traditional Chinese medicine, and you got all straight? You got it perfect. Makes total sense. But you think you did that for decades? Oh, yeah. Okay. To what I mean, what did it do to you to have it that long and not treat it?

Anastasia 7:20
I couldn't really say, you know, I'm a person. I don't really look back. I'm like, Okay, I'm glad we figured that out. Moving forward. I just know, there were, you know, the symptoms, the tire the digestive stuff, I just had a lot of stuff that I was like, Oh, I guess I'm just made this way that I

Scott Benner 7:38
was there any issues or anything that stuck with you afterwards, weight gain that wouldn't go away or anything like that.

Anastasia 7:44
That particular part of it was never a problem for me. So I think it also contributed probably, to them being like, now you're fine. You know, I'm sort of I'm like, normal, and I've always had been. So that specific one is, like the obvious one, but lots of other stuff that, you know, it's just always as I said, like, so easily explained way by other factors in one's life at any stage. You know,

Scott Benner 8:08
we're those things cleared up by the Synthroid.

Anastasia 8:11
Yeah, a lot of them like I didn't know I could wake up and feel that I was rested and move through the day and yeah, they were, they were and when they try and wrestle away my Synthroid, I cite like the devil, because they want to give me generic and I tried to go down that route.

Scott Benner 8:26
And it just doesn't. You know how crazy you brought that up? Arden is back home from college. She just got home the other day at but for the last five days that she was there, she's like that I ran out of Saito mill. So Arden takes terrassen which is just a different brand name and then Synthroid and she also takes Saito nos, which takes t 43. And I said, Okay, well, you know, can I get it sent down there to, you know, a pharmacy, she's like, I'm so busy with finals and I don't think I'm gonna be able to go get it. So can you just, you know, pick it up and have it at home. So she went five days without it plus a day of transport. And I said, You have no idea. I drove 14 hours. And then at like three in the morning, I slept from three to five in a hotel. And that was not easy to find. And then I got up at eight, took a shower, drove three more hours, picked Arden up a two and a half more hours picked Arden up, had to you know, take all of her stuff down to the car and help her clean out a room and everything. Then we just drove straight home. So I think we left it two in the afternoon, and then arrived home just a few minutes before 4am. So, so five days plus that trip. And Arden hadn't had Saito Mal, and as we're riding home, she's like my wrists are achy and my knees are starting to hurt. And you know, she even said like my stomach seems like everything started to like get away from her for five days of not taking it. So I said no, don't worry. I got it for you. As soon as she got home for in the morning, I'll tell you if you want to know what it's like to have an autoimmune disease, for in the morning after that trip, I had driven about 28 hours of like the previous 36. And we gotten to the house and I was like, Hey, here's the pill, like, take it, you know. And we looked at it, and they gave her the generic, took it out of the bag, and it was the wrong one. So, so I went to the pharmacy the next day, and I was like, Look, you have to take these back and get her the right lunches, but we won't have them till Monday, which is today. So actually, when I'm done talking to you, I'm taking those generic tablets back and swapping them for the brand name, because she's taking them because it's we're hoping it's better than nothing. But the truth is, is that only the brand name works for That's right. Yeah,

Anastasia 10:44
I think you got two new sponsors for the podcast, just

Scott Benner 10:48
excited to mill in Paris, and they should definitely call actually, I could probably sell the sillies out of that and

Anastasia 10:55
we need the brand only.

Scott Benner 10:57
You guys gotta call anyway. So alright, so that's that. Tell me about your what I want to know about first. I guess I want to know how you manage. Do you are you MDI or are you pumping give a CGM.

Anastasia 11:13
Okay, so right now, both my daughter and I are on Omnipod side. Okay. Make a note. But in all those years, we boy have we had a road of different things like all of us,

Scott Benner 11:24
right. So what did she start with? I guess? So when

Anastasia 11:27
she was five, I think they shoved the mini med on her. And I think pretty much everyone in the practice had that and we really had to fight like the dickens for the first Omnipod which she probably got maybe two years later.

Scott Benner 11:43
Okay, so she went from mini bed to Omni pod and then from Omni pod to distribute a dash or right to five.

Anastasia 11:49
We went to looping. Oh, okay. In between. All right.

Scott Benner 11:54
So then you looped. And then you did Omnipod five. And that's, that's your daughter's path. What about you?

Anastasia 12:01
So I was diagnosed through trial net. So at the endocrinology practice, right after her diagnosis, they asked us on our first meeting, like could you give blood for this thing for science? We're like, Yeah, of course. My son and husband got a letter, I got a phone call. i They said you have two out of four markers. This is a long time ago. This is 2008. At the time, they said to me, so you have a 50% chance of getting type one diabetes. And back then, as I said, like, I wasn't a juvenile. We still called it juvenile. So I was like, well, obviously, I'm the flip of the coin that doesn't get type one diabetes. And so like, Yes, I'm all yours, study the hell out of me. Anything I can ever do. So I went in monthly for a glucose tolerance test, like a four hour one where they're constantly checking me. And it was either six or eight months in a row of doing that, that my blood sugar went over 200, which was at that time, a diagnosis of type one diabetes. Wow. So yeah. So at first, I was in the most deep denial. I just, I couldn't believe it. It was like, it's so weird that it was like embarrassing. Like, no, no, no, no, this is this thing my kid has, you know, not me.

Scott Benner 13:20
Embarrassing, because it seemed like a child's disease.

Anastasia 13:23
No, it's really a weird thing that I have a hard time explaining. But like, we really rallied around my daughter. And we got super involved in JDRF, we got super involved in advocating for education about type one, and it was like her thing. And then it was like, Oh, and by the way, I have it too. And it was also such a shock. Like I had never, I honestly had never heard of type one diabetes, there was a vague understanding that there was some kind of diabetes for old people, something to do with oatmeal. So I really had no idea about it. So there was such a big learning curve for us. And we're kind of like, do it people. So it just felt like it was her thing. We had a big walk team that was like, you know, yeah, 100 people. And it was she went to Washington DC with JDRF. She met President Obama in 2009. It was like one of those things. And I was completely silent about my this whole path toward the whole trial net thing I just never told anyone, obviously, except my immediate family. For reasons I couldn't really say but I think also I truly I was in actual denial. Like, no, I've lived my whole life. Like I do not have this thing. And then people would say, ultimately, when it all came out, like, Oh, so you have this your whole life. It's so sad. And I'm like, That isn't how it works. I didn't you know, I'd be dead if I had this when I was five. Right? You know? Well, it's just it's a lot of factors.

Scott Benner 14:53
I think I understand you had you knew about the oatmeal, diabetes, but you didn't know about this one. I love it. I don't even know what you mean. aim is that the oatmeal diabetes, but it's But moreover, that you guys threw yourself into this supporting your daughter through these causes. And then suddenly, it's you too, and you're not wanting to encroach on this thing that you've done for her.

Now let's talk about the Dexcom g7. The Dexcom. g7 is a small and wearable continuous glucose monitoring system. It sends real time glucose readings, to your Dexcom g7 app, or the Dexcom receiver. Use my link dexcom.com forward slash juicebox. To learn more and get started today, you will be able to effortlessly see your glucose levels and where they're headed. This way, you'll be able to make better decisions about food, insulin and activity. Once you're able to see the impact that those variables have on blood sugar, you'll begin to make more purposeful decisions and have better outcomes. My daughter has been wearing a Dexcom My daughter has been wearing a Dexcom product for so many years. I don't even remember when she started. But today she wears the Dexcom g7. And it is small and easy. And oh my goodness, are you going to love it dexcom.com forward slash juice box, you can head there now and click on the button that will get you your free benefits check or just hit that other button that says Get Started. When you use my links, you're supporting the production of the podcast dexcom.com forward slash juicebox. Don't forget to check out touched by type one at touched by type one.org. And also find them on Facebook and Instagram. I'll be speaking at their next big event in September, head over to the website right now to get more details. I hope to see you there

Anastasia 16:57
is I think that's it.

Scott Benner 16:57
But it's yeah, it's hard to put into words though. It's interesting. Yes. Okay. Well, that's fair. So, okay, so we oh, by the way, I don't think we're currently in a relationship. Meaning I'm not getting money for this. But still the link works, trial net.org, forward slash juicebox. If you want to use trial net, it's free. And you know, they'll test your family and all that stuff. So very good way to find out if you have markers for type one, getting past that. You start with so you've seen your daughter on a pump when you get an insulin pump when you get diabetes, but you're also sounds like you're trying to avoid being honest that you have diabetes. So how do you manage coming out of the gate?

Anastasia 17:41
So at first, I think I was on one unit of Lantis over a 24 hour period. So right so basically, we just slow walked my pancreas into extinction. And it was it was a slow process. I don't think I felt like, Okay, if I eat one great, I need to give a shot. So those aren't shots for a long time. I think it probably took almost two years.

Scott Benner 18:09
So So trial in a way that allowed for a little bit of support from a Basal insulin to help you out for the death rattle years of your pancreas.

Anastasia 18:23
Absolutely right. And also in the past 14 years, I have met so many adults who were diagnosed in adulthood and who were mistakenly diagnosed with type two, and really ended up in crisis. So for that reason, I'm very grateful for TrialNet because, like I said, I just kind of walked through it quite easily. If you're,

Scott Benner 18:45
if your daughter doesn't have diabetes, you could get misdiagnosed as type two, they could put you on Metformin that could go on for years before you find out what's really happening. Yeah, right, right. Okay. Okay. So eventually you go to a pump.

Anastasia 19:00
So, so I went to a JDRF meeting in the city. And on my way back, I listened to diabetes, concierge shout out to Katie De Simone. And I honestly think I pulled over and I was like, hold on. I think I could do this. And 100% of my thinking was for my daughter's behalf like I was still on MDI and I was doing absolutely fine. So I embarked upon the building of glue, which I cannot begin to express how far from my wheelhouse computer science is like, I'm a writer. I'm a creative director like, that is not my forte. But Katie did that advent calendar, it was literally like day one. Update your Mac, okay, close the Mac and go have a cup of tea. It was so brilliant and accessible and she was a mom of type one and I thought, okay, come on. I can do this very slowly over the course of the summer. I built it. And I had somebody's computery child, like 13 year old come over to help me at the very last step. And when I did, I realized, hold on, I've got this code in my laptop, I had a lot of pods. And I realized I can just put myself literally, you just, I mean, you remember, it's like the play button like play. And it arrived on my phone. And I thought, if I don't do this, myself, I'm never gonna be able to help her with this. And she has zero interest. She, if I just said to you that I am not computer math techie. She's the only person born in you know, 19 years old, who is worse than my mother on technology, because she is truly an artist like she is in art school. And she's absolutely one of those special people who can create a world of art and beauty. But then she's like, Oh, I forgot to go to sleep for a couple days. So yeah. So she had no interest in managing a loop system. I mean, and honestly, neither did I. But I was so motivated to help her. But I was like, Okay, I think I'm on the Omnipod. Now. So I sort of back fit that into my lovely understanding endocrinologist, we loop for a couple and a half years together.

Scott Benner 21:21
So first thing is, I do think it's possible that this younger generation, still has people who don't understand technology, because everything's so automated at this point. Nobody even knows how anything works. I would not feel comfortable betting $5 that either of my children could explain the Wi Fi to you. I'm not I'm not even kidding. So that doesn't surprise me about your daughter at all that that. That seems about right. To me. I mean, also worries me a little bit, not in a big way, and not in a way that I would want people to freak out about. But as we automate insulin pumping, I'm very focused on making sure that people don't forget why it works. You don't mean and how it works and how insulin works. I very much one. I'm not I'm not obviously not saying you should use needle, you have to use a needle for a year to really figure it out. But you, you know, I don't want to get to the point where people are just like, slapping on algorithms and like, oh, it works. And and they don't know why. Because then when something does get funky, they're not going to know how to get themselves out of it. But anyway, automation, automation is great gives, you know, it gives a lot and I just worry about it taking away people's understanding. Anyway, that's that's not the point. So you guys, Luke four, also that you just kind of said diabetes concierge earlier, like everybody would know. But that's episode 227 of the podcast in mid 19 2019. It's three and a half years ago, that episode went up.

Anastasia 22:47
Yeah, yeah. So yeah, I would have followed up that episode. And I don't know if I listened to it, right. Sure. Sure. But yeah, that was it. That was the turning point.

Scott Benner 22:57
Yeah. So Katie, who I don't know what she does now anymore with DIY looping. But at the time she was so just at the core of how people were teaching each other like she did these writings online. And, like you said, like the advent calendar, like walk through day by day to get it set up, because you're programming something, you're using X code to build an app to build an app, and then become an app developer, and then load it to your own phone. And there's a lot that goes on, there's a lot of code. And there's a lot of when you're looking at it going I don't know what any of this means. So they they just step you through it in a way that you kind of can't mess it up. It's it's pretty Yeah, absolutely right. People that that help people like that. Okay, so what did you find for your daughter First, I would think because she had diabetes longer, but how do you describe the getting on loop and what it did for her life?

Anastasia 23:51
Right. So there were great benefits. And I did feel very alone. Like at first, we actually didn't even come clean with our endocrinologist, which is crazy, but it feels like 20 years ago, but you know, whatever. Three years ago, nobody was saying that this was okay to do especially because loop really is not FDA approved. So I ultimately, the endo came around, but couldn't really offer us help. So I felt like I was my daughter's endocrinologist and nothing about that is it's not something that I mind. I just wasn't very good at it. So she did she would still have like, I think if one can get one settings, right on loop, it's heaven. But I just never sit you know, I cannot look at a chart that it just that doesn't mean anything to me. I've heard you say like, give me an ultimate problem and I just have to lay my head down on the debt like it's over. That is how I am about a chart. So you know, helpful people could try and contribute like well, we should be doing this. As you can see, the Basal should Be here. And I just my mind doesn't work that way, my daughter's mind doesn't work that way. And I never felt like I really, like we've got this, you know, she'd have a period of time where things were fine. But also, you know, this coincided with like junior and senior year in high school, her life was never that it was pandemic, like, there was no real consistency, I just felt very alone. And I really struggled with the part where, like, Mark, you know, the whole, the outside device, so the Riley link, or the orange link, which allows the pump to communicate with the phone, we had a lot of connectivity problems, and, you know, she'd be banging that Riley thing up against the pot on her body. And, you know, maybe the bullets didn't go through, maybe it did, but she's still running out the door, that kind of stuff. But worst of all would be like, Okay, I got a pump fail, like, what am I supposed to do now, and the troubleshooting. So you know, and then the rebuild, or we got a new phone, or we got an Apple watch that whole rebuild process, honestly took years off my life. As you mentioned, there are so many helpful people out there, but I just did not feel good about being fully dependent on like, I hope one of these two people who have helped me in the past might be might happen to be online right now, in the middle of their own lives, you know, dealing with their own diabetes, their kids, their husbands, and I just did not like the vulnerability of thinking, you know, this is gonna go down for her, she's, there's a 0% chance she's gonna go on the Facebook group, and search within it for the key word, and then find not 75 comments about how annoying this is, but the one that gives you the answer, and the words around computer science, I just don't even have access to those words. So it would be like pick up the code and do that, you know, like you said, X code or run this script, what what I just know, I don't know what any of that means. So I take your point,

Scott Benner 26:54
I really do. I spent a lot of time trying to explain it to myself and trying to explain to Arden and I agree with you, for the most part, it's just it's if you don't know about it, it's a foreign thing. I just want to kind of clean up the conversation for a second so loop. For people who don't know or listening to this one first is a completely Do It Yourself algorithm, which means that people around the world online, built a program code that takes your Dexcom data and then looks at it makes decisions about what it thinks your blood sugar is going to do. And then tells your pump to give your insulin taken away and make your basil stronger, make it weaker. Like all this stuff. It automates it. It's it's a it's a completely DIY version of automated pumping like now tandem has control IQ Omni pod, as Omni pod five, Medtronic has theirs. But then there's this other one. And I mean, you're hearing Anastasia talk about it, it's you're completely on your own. It's never been, you know, the FDA hasn't looked at it. And you know, it's just been verified by users. I'd say Arden has been well, I mean, Arden has been using loops, since probably a little while after I did that recording in 2019, she took a break for a while he's down on the pod five work great. And she wanted to go back to loop because she didn't like she wanted to have everything just on her phone, which was on the pod five and the phone she had wouldn't work. And she's like, I just don't, I don't want to be carrying two devices. So she went back to looping. So that's, that's what it is. And it's you're on your own. But there are these people online that have done amazing things. Like for instance, now to get the code like you don't actually have to write the code, you don't have to type it in, it's somewhere online, you used to have to find it, download it, then put it into the app. And now it's just a link, you just click the link and it populates the next code. And the next thing you know you're on your way. But to your point, I text somebody every time before I do that, but I'm just like, it's this link, right? Because of the uncertainty like I don't want to do the wrong thing. And would you say it's gotten better over the years, meaning you don't have to rebuild it as much anymore? Things like that.

Anastasia 29:00
Absolutely. I mean, when we started back in the day, 2019 it was literally like x space, right? semi colon. Two more spaces, like we were writing that code and but now you're right there isn't a link and it can be clicked on. And still, the kind of that sort of troubleshooting side of it. Maybe that's even a little bit better. We're a little out of practice now. But that still I found, you know, very daunting and there are a couple of little glitches that kept coming up for her like some timezone thing that nobody can really explain but you have to rebuild and it's not a big deal. But that word rebuild that meant she needed to have my laptop right because she didn't have a laptop I suppose I could have put But see that's the kind of skill I do not have, you know, to have like put Xcode on her own laptop and said plug in and click this link that I just yeah, I didn't really

Scott Benner 29:57
know I know I said art into school. So Arden had a laptop that she had all through high school, and it's on its last legs. And she said, can I get another laptop for college? So we got her one. But we took the old one. And I said, Okay, there's nothing on this, but X code, just stick it under your bed, put it under your dorm room bed. Because if something goes funky, I'm going to have you pull that out, plug it in, and I'm gonna try to, like walk you through it over FaceTime, you know, and, and she was only there for, you know, first semester and there was no problem. So should not knock on wood we didn't have to do. Because it's not, it's never gonna happen it you know, two o'clock in the afternoon, when you don't have anything to do, it's gonna, it's gonna happen at midnight or something crazy like that. And I remember

Anastasia 30:39
every single time, every single time, it's the middle of the night, and I remember the

Scott Benner 30:44
timezone timezone thing, where after daylight savings, I forget what it was, if you change something it would like,

Anastasia 30:57
it's like, if you change the Basal rate, the whole thing.

Scott Benner 31:02
Essentially, and then you have to rebuild it to get out of it. But then eventually, there was like a, some, like, weird shortcut that you could fix it without rebuilding it. And I know if you're listening to this and thinking, I don't ever want to be involved in this, I would completely understand. But it's a I mean, there's probably I don't know if there's an official count, but I bet you that codes been downloaded 20,000 times, something like that, from what I hear people say, I don't know that that means everybody's using it. And that's certainly a small percentage of people who have type one diabetes, but it's still, I think it's one of the nicest things I've ever seen humanity do for its for each other. It's really,

Anastasia 31:41
I completely agree. I agree. And I was, in some ways coming from a place of like, these people have done enough. I don't want to be the person, you know, Facebook, messaging someone at two in the morning, because I'm desperate, you know, but there is such a group of kind, smart people who just keep that afloat and keep improving it. And yes, I really appreciate it's

Scott Benner 32:05
amazing. But here's the rest of it, right? Forget loop for a second algorithms in general use you starting to allude to it or you're talking about it for a minute, but understanding how to use it in settings. It's not, it's they're very important. You can't just put the thing on and y'all go, and it's just going to work, you really do need to know how to use it, you still need to know how to Bolus for your food, you need to understand the impacts of different foods. It's not where it really shines is trying to stop a low and being aggressive about a spike. That I mean, I think you don't realize how much of manual management of type one diabetes, like when people are like it goes wrong, or I spiked or I got low, you don't realize how much of that is happens in the times when you're not looking in the transition times like I ate at 10 o'clock, but I got low at one. But you weren't paying attention from 11 to one. And that's how we, how do I put up with this, my little brother used to get in trouble all the time. And we used to say that Rob had two states of being he was either in trouble, or about to be in trouble. And, and you didn't know when he was about to be in trouble. You knew when he was in trouble. And I think diabetes is like that too. As far as like spikes and falls go it's either happening, or it's about to happen and you're unaware of it. And when it's about to happen and you're unaware of it on a manual pump, then it happens you get low you spike high. When it's trying when it's about to happen on an on an algorithm, the algorithm takes steps when you're not looking to stop that thing from happening. And it's I mean, it that's what and it also when you think about like stability, that's also how it creates stability by getting ahead of lows, getting ahead of highs and taking the wobble the up and down out of that line. It's really amazing. So did you start with you must have if you started that long ago, it was just basil, right? Like the algorithm was using basil to try to stop spikes back then. That's right. Yeah. Yeah. And wasn't perfect right.

Anastasia 34:11
Now, yeah, it was not perfect, but it was better. It was just as you say, it just sort of it was like little guardrails on that grass that I don't Yes. And

Scott Benner 34:20
it's like bumper bowling. It really is. Yes,

Anastasia 34:23
that's exactly what I was thinking. I couldn't think of what to call that the thing that stops you from getting it.

Scott Benner 34:28
Exactly what that's what you're thinking. So even though it's working and you see the like, it's going from right to left or right, the left at least not falling into the gutter. But when they came out with I forget what the first auto Bolus branch was that I saw. And branch is another word like, you know, you heard Anastasia say earlier, like there's words and I don't know what they mean. So I guess coders know that there's like the, I think I'm getting this right. There's the first piece of software that's written I guess that's sort of like the Think of that as the trunk and then some people come in and go this is a really cool piece of software but I would rather it Bolus when I get high instead of increasing my basil. And then they write a branch of code off of that. That includes that. So there was an auto Bolus branch. I think the first one I saw was from somebody named Pete. I think now Arden uses Ivan's I'm not even sure.

Anastasia 35:20
I've been worried about Ivan. Although I obviously like you. I don't know any of these people or where they come from? Yeah. The one that we ended up on was a Otto Bolus branch called free APs. It was like a little.

Scott Benner 35:31
Eventually we got to them. That's where she is now. Yep.

Anastasia 35:35
Okay, I still have it on the front page of my phone. And I and I just it, there it is, but I'm on the five

Scott Benner 35:42
and then. Okay, so then here's the big question. We understand what loop is what it does what it's done for. I mean, a little bit of context, what was very one sealed loop and yours.

Anastasia 35:51
Let me just think about that. Hers has fluctuated a bit, and I'm terrible at keeping records. She might have been in that high sixes Okay, that's fair. Yeah. And right. So she Yeah, so that was an improvement. But she still was having lows. And that really scared her and me and we didn't love that not a ton, you know, but but enough that it was not great for her in that sense. And again, I'm fully aware it's it's down to me in my settings, but I just didn't feel I had the skills or the sport to perfect those settings. And mine, I'm actually pretty sick no matter on MDI. I was like high fives loop. I was about the same. And I think I'm about the same on the five. So I'm just I'm on it. You know, it's easier for me, I'm an adult, I'm not hormonal. I'm not in college or elementary school or, you know, I'm, I'm a little bit steadier. So I'm I probably haven't seen a massive improvement. No, I did have an improvement. I take that back. I did have an improvement from MDI to loop. Definitely. But I couldn't remember exactly what the onesies were.

Scott Benner 37:00
You just said, I'm not hormonal. And I was like, but you were 39. And then I added the 14, two and I went, oh. Yeah, I see. She's not 39. She's more like 53. Yeah, big difference, by the way, getting rid of the hormones. And if you're not eating a bunch of fatty food or processed food, it also makes things smooth. Right? Right. Okay, so everybody's having success with loop. It's doing well, what makes you I mean, listen, I don't know that I need to answer ask this question, because I think we've answered it while you're talking. I was gonna say what made you switch to Omni pod five, but I think you're gonna say that it's easy.

Anastasia 37:40
The desperation of mom, my loop failed. Can you fix it? You know? So, yes, that and of course, I'd been stalking all kinds of automated insulin delivery systems. And I was looking forward to Omnipod five coming out. And so yeah, especially also it was coinciding with her going to college, and all that intent that entails. So I thought, This is great timing. Let's try it. And I really just put myself on it for the same reason I put myself on loop. I need to know it and understand it to be as effective as I can to support my daughter.

Scott Benner 38:15
Just a good mom. Yes. It's called a humble brag. When you say that you're like, I'm just kidding. I would have done the same thing. I think that's a great idea. Like learn it for yourself. So you can teach it to someone else. Yeah, did you? So you went first?

Anastasia 38:28
You know, she actually went first because I pushed for her to get it. And then I realized, like, Oh, crap, I should probably do this too. And I wasn't I didn't love having to rebuild for myself any more than I did for her. So somehow, she got hers maybe a month before me that we could do another episode on the almighty insurance issue that continues. Thankfully, we're in a good place at this moment. But anyway, yeah, so she had maybe a month. I mean, she probably started in late June. And I caught up with her about a month later.

Scott Benner 39:00
So what was I mean, and that's what we're gonna talk about the rest of the way is the transition. So what was it like? It? Was it different for both of you? Was it similar? Did you have the ability to listen to the episodes I did about it about starting on the pod five before you started, were you starting more blind havoc, though?

Anastasia 39:19
Right. I started before the episodes. So of course, I listened to them, but I had kind of already been going. I did the training. I read that big manual. I felt, you know, we were so familiar with the Omni pod that it didn't feel, you know, it wasn't a massive transition. You know, a lot of information has come out since about starting more aggressively. I didn't really know how to do that at the time. You know, there was it was on the early side. It was actually it was early, so I didn't I there really wasn't anyone to guide us on that setup, including our endocrinologist to be honest So I would say that when she started, we had that which we see in all the forums like, great. So she said 140 all day, which was not really what we were looking for understanding that you give up a little bit of precision control for safety. I was considering, like, do we do a hard restart and be more aggressive about her input of basals. And then the universe decided for us because her PDM failed. So she had to get sent to new one. And we did start a little more aggressively and, and it's better, it's better. It's exactly it's our bumper bowling. You know, it's kind of tightened it up. But what is different for her, because she had had some bad lows that were like, you know, made her very, very skittish about getting though, is it it has really helped with the lows, and I didn't have a lot of lows before but I did absent, like I almost forget that what getting low is like, it's not that it never happens. It's more effect. I was thinking last night going to sleep like Oh, I wonder what we'll talk about. And I'm gonna tell him like, I have not been low. I can't think the last time I was low, and then yep, I was alone. Last night. Yeah, yeah. So it's going great. I will concede that perhaps it's not as tight but she hasn't had a blood draw a Wednesday yet or she did but her appointment isn't until I think this week to come. So I don't have an official a onesie for her. But I'm gonna guess it's pretty good. It's pretty good.

Scott Benner 41:37
I do have it on like, clarity. You know, about where do you think it'll be? Oh,

Anastasia 41:41
you know, I haven't looked at her clarity. It's going to be it's going to be in the sixes. That's great. Let's put it that way.

Scott Benner 41:48
Yeah, in the sixes, not fighting with Lowe's. Not not being an app developer. It's pretty good. Good. I mean, you know,

Anastasia 41:59
what I was going for? Yeah, go and live your big life in college. And also, I did not have type one diabetes. When I was in college. I can't even imagine it. Like, if I just think back to any moment in time, when I was in college. Like, was I going to be considering what my blood sugar was? And should I have those cheese fries or whatever? Like, it's, I'm aware that it really is a burden that anyway to lift that burden a little bit? is worth it. Yes. I wish she had a 4.8 a onesie? I really do. But here we are. Well,

Scott Benner 42:33
I mean, what year in college is she even? She's, this is her second year, for second year, in the never ending ride home that Arden and I took together I probably found five different ways to tell her how proud I was of how she handled her diabetes, what school, you know, and it was, it was quite an adjustment. And then maybe just a week before she was back, there was a problem. She had to change transmitters on the G six. And it just wouldn't pair right away. And it happened super late at night. Like to the point where, you know, we're it's like three or four in the morning. And I'm finally like, I got it. And like, you know, go to sleep. And she's like, can I go to sleep? I have a final 11. And I was like, no, no, like, that's fine. Like, go ahead. And you know, and even if she's going to sleep, we're still in the warm up window. So I don't know what's happening. And, and of course, in the four hours that we struggled with it, her blood sugar shot way up. So now we have like a high blood sugar with a lot of insulin with no CGM with her exhausted with me not being able to see your blood sugar. And so I sat up for two hours till like, I don't know, 530 in the morning, I don't even know why I sat up. I couldn't see anything. I just

Anastasia 43:47
Yeah, but you just were ready in case somehow didn't know.

Scott Benner 43:52
She could have been dead already. And I was just sitting there, like, I can't go to sleep. And then it all came back on and you know, I could see what was going on again. And I was like, okay, you know, it's fine. Then she slept and went off the class. And I think she got an A so she did go out great. But that's not really the point. The point is seeing how tired she was. There was desperation on her face. She started like we were FaceTiming she started looking younger. Do you know what I mean? Like, yes, yes. You know, you know, yeah, talking about like, like, She's over there doing this great job for 10 weeks. And in the last three days, this thing happens. And all of a sudden she looks at you like Daddy, come help me. You know, and it's not a great feeling. But there she is. And she did it. You know? Yep. Yep. So anything that makes that better, easier. And I'm on I have to tell you the her backup system ecologist, the Omnipod five, that gets great. It's there and it's ready to go. Because I told her I was like if there's any problem with this, I said we're not going to mess around like we'll bail and you'll go right back on the five that just have to carry the extra you know, the the controller for a while. Yeah, so anyway, Yeah,

Anastasia 45:00
that story, I mean, it just I get all the feels it, you know, everyone listening to this is connected oops, to type one in one way or another and the stuff that we all go through we really are warriors, because you know, nobody outside of our little tribe of type one people could ever understand that that thing you just revealed that we have all been through one version of it or another like on a, I don't want to say on a regular basis, but kind of like that's always at the end of the possibility when you open your eyes in the morning, like what's gonna happen today.

Scott Benner 45:37
It's also not lost on you. While it's happening that I don't know, the last time we had trouble swapping a transmitter. I mean, years and years and years, it just happens every 90 days on the G six here we go pop this one off, put that one on. It just works and works or she doesn't one time in a different place. I watched her do it. She didn't do anything wrong. I don't know why it just didn't connect right away. And, you know,

Anastasia 46:04
technology and things are gonna lit

Scott Benner 46:07
Yeah. And I'll tell you what, if you're listening, I went through all of my knowledge. And I thought, I don't know what we did wrong. I don't think we did anything wrong. I don't know what to do. I went to my own Facebook group. And I was like, Hey, guys, here's what just happened. Like, throw out all your ideas. So I can just read through them and hopefully scan it and find the thing that I didn't do. And it turns out, I don't know why it just worked the next time. So whatever. Just

Anastasia 46:32
whatever. Whatever. getting on with the day. Yeah, moving

Scott Benner 46:36
along. So how are you liking on the pod five? Like, so works for her and her situation? How's it work for you in your situation?

Anastasia 46:43
Yeah, I like it, it is you do have to have the controller, which is an adjustment. And it's a little bit clunky, just saying. But the beautiful thing is you don't actually have to carry around with you everywhere you go like, yeah, it's the pod and the Dexcom directly are talking to each other. So you can go out and do something and you don't unless you're going to want to bow with Yeah, I'm I think it's probably keeping me again, pretty much the same as loop I was a little tighter. And I'm currently again, going through all the Facebook groups, I'm currently trying to really be on it, like once an hour, see what my trend is, and just correct and have the algorithm learn. So I'm in the middle of doing that. But yeah, I'm happy with it

Scott Benner 47:28
good. Well, I mean, not that you're about to go away to the home and assays or anything like that. But But But 53 alternative, the 63. And I think that this is the way like I said, I want art and to get to Omnipod five, at some point, like I want her to be on it, I want it to work, and I want it to be easy for because she's going to live through her 20s and 30s and 40s. And, you know, with this thing, and, and I also think about people who are older, their 60s and 70s. Like maybe they could get this great control, save them from the lows really extend their health and their life without having to understand a thing. So that's the other side of the automation. Like, there's plenty of times in life when it's easy to say, well, it's doing something and I don't understand. And because of that I might be missing out on something. But you got to put yourself in that other situation when you're either too young to understand or too old to understand that the rest of that doesn't matter. Because it's not like you're going to figure it out. So yeah, so let's just put the bumpers up and keep the ball out of the gutter. Yep. Yeah,

Anastasia 48:32
I agree with that. Good. That's, that's

Scott Benner 48:34
where I'm at with all this. I don't think we I'm sure people quietly worry about when their kids get older when they get older. But I've spoken to enough people now in their 50s and 60s and you know, that have diabetes and from the meter screen being hard to read to I don't know how to draw, like what happens when I get confused and get myself 10 units instead of one unit or something like that.

Anastasia 48:58
Right? You know, a lot of room for error. You don't think

Scott Benner 49:01
about stuff like that. But the other day, my mom moved into a new place. She's 80. And my brother went over to check on her. And he says he got troubled

Anastasia 49:09
Brother, no getting in trouble.

Scott Benner 49:12
The troubled brother's a nice responsible person now, by the way, but when he was a kid, as a kid, he would have been able to give any anyone a run for their money. But in fairness to him, we did throw him outside naked once so I don't know what we did. You know, but But point is so my brother gets to my mom's house. She's got this like lounge chair. My mom's not in her room. She's out eating, you know, down at the cafeteria having food. But the lounge chair is completely reclined. Still. Oh, so my brother says, Mom, why is the chair like this? And she goes, I don't know. And he says, Well, how'd you get out of it? She goes, I don't know. So if at a moment you're going to be at one day and somehow trust me she's not flee to foot somehow get out of a Barco lounger without folding it up and then not remember how it has Ben, I don't think you're gonna be building your loop.

Anastasia 50:02
Exactly. Exactly. Did you Pre-Bolus and look through your graphs for that? Yes bike? No, I don't think your mom did that she rolled out of the Barco

Scott Benner 50:12
my mom. Exactly in that scenario, if she had type one diabetes, there'd be a person who would come put a new pump on for settle up, put in the carbs, and keep and if this if Omnipod, five or control it, whatever, doesn't matter if any of these algorithms can, can fairly, effortlessly keep you in the middle. I mean, it's a big deal. I'm telling you, we are at the precipice of something amazing. People living through it right now don't even understand it. It's, it's a savior for people with type one and for anybody using insulin.

Anastasia 50:46
Right. Well, I think that the progress that has come from me putting on a headlamp, and going into my daughter's room when she was five, and pricking her finger every two hours, like that was in our experience, and now, it's just gotten so much better. I have to believe it'll continue to get better and better.

Scott Benner 51:05
That's leaping forward. I know I'm, I'm imagining you with a miner's hat on but it was just it was just, it was like it was like a, like a, like a stretchy cord that were on your head. Yeah,

Anastasia 51:16
it was my son's from camp. Yeah. I just didn't want a

Scott Benner 51:20
good idea. I mean, I take my phone. I turn the flashlight on. And then I flip the phone upside down and put it next to her sort of sort of like illuminates the space.

Anastasia 51:34
Okay, that's my move. Good one. Yeah. I like the headlamp better on this thing.

Scott Benner 51:38
Have you ever dropped her phone on them while they're sleeping?

Anastasia 51:41
Oh, I've done it all. I've done it all. I once tried to change her pod while she was still asleep as she like woke up. Yeah, we've all done crazy.

Scott Benner 51:50
I've bounced that old PDM off of her head one time the big. shot her in the face with like, juice boxes so many times. Like, you know how? Oh, yeah, the pressure changes in them and it squirts. I know it. Well. I know. And then if they don't wake up, you're like trying to mop it off their face. But if they do wake up, they're like, What the hell is happening? And I'm like, I'm sorry. I like spilled juice on you and mopping it off. And yeah, but I've dropped my phone on her like, you know, they're heavy click clunk. Centerstone. Sorry, or, yeah, yeah, well, I've no, I'll tell you one thing I tell you. I'm very proud of this. I have never gotten blood on a bedsheet I'm so careful about that. That's extra, you've never had a squirter nothing. I've never gotten blood on a bedsheet. I would like somebody to bring that up at my funeral, by the way, as a major compliment. Because, you know, you hit sometimes you hit it, and you test, and then it just keeps bleeding. And you know, you're like, trying to rub it like, I don't know what to say. Like, there's something about like, friction here. You rub it a little bit, it stops. Yeah, and I've never done that. I've always been very proud of that. So no blood on the sheets. Thank you, thank you, I'm gonna put it put it my resume along with I just got this great note the other day from a lady she put up a picture of her baby to say how, without the podcast that she wouldn't have been able to have this baby. And it was very sweet. So of course, I responded, it would have killed you to name her Scott. It's a girl and everything. I still pressured her about naming the baby after me. And people are laughing and everything. And then this other person comes in to say that because of the podcast, they are getting ready to try to have a baby. And I said, I responded, I'm not very like you understand it's I'm not very good at being like, Oh, thank you. Like, you know, I'm just so I said to that person. I'm gonna put on my resume, quote, responsible for people having more sex. I said I think that'll that's a nice legacy to leave behind.

Anastasia 53:52
Yeah, that goes right next to your no blood on this. Oh, no, I don't like you

Scott Benner 53:57
don't like that. You don't like those two, like the commingling of these ideas? I do all I know is one of you. I almost cursed one of you have gotten a McKidd Scott before I'm done with this podcast and make it the handsome one. Don't pick the you know when it comes out. You're like, Oh, not that one. Like I want the real handsome. It's all well, that's gonna be tall. Actually, I don't want anybody to name a baby after me. It happened to art. So somebody somebody who listens named a baby Arden. Oh,

Anastasia 54:25
but Arden is a nice name. Let's not put the pressure on your daughter that it was after her. Well, another

Scott Benner 54:29
woman to say that she named the baby after. Arden did not handle it. Well, by the way. She's like, tell your people, which is always the thing. She's like, not to do that again. And I showed her the baby. She's the baby's cute. I was like, okay, she's like, but come on. Nobody will know. Don't worry about it. Anyway, have we not talked about anything that you wanted to talk about? I want to make sure we don't miss anything.

Anastasia 54:53
I just knew it would go free flow exactly where it should. It's excellent.

Scott Benner 54:57
You were great. You're very easy to talk to I appreciate that.

Anastasia 55:01
You too, although of course you already felt familiar to me. So kudos for your style and skill. Oh, no, it was great. I really enjoyed it.

Scott Benner 55:09
Thank you. I see what you're saying. Really? I'm the one to be congratulated. Here. You are. Yeah. Because I didn't know you. And I did. Fantastic. You do? Excellent. I'm still fighting the end of my COVID cold.

Anastasia 55:22
Oh, I didn't know you had that. I didn't hear that at all. Oh, my

Scott Benner 55:25
God, you have no, it was just this whole time, this COVID thing, when did it start? 2019 Whatever it was, and never got sick. And listen, my job's indoors. My wife was able to work at home. My kid came home from college, like, you know, we were careful stuff like that. And you get the vaccination going on yours. Like no, COVID like to the point where I actually said to somebody, I, this is probably what got me COVID. But like a month ago, I said, I wonder if I'm that blood type. They say that like doesn't get it like maybe that's it. I never looked into it. Even I couldn't have cared less. Well. Oh, you know, oh, Kelly goes to away for work. It comes home. Sick. We requested her. But they gave her that freaking there's a drug they give you that makes it go away super fast. But some people get a rebound illness that's worse than the first one. So my wife gets the rebound illness after we released her back in the house because nobody told us that could happen. She infects everybody, me and Cole. Were super, super sick for like weeks. And then the COVID is gone. And I go home. Okay. And then I got sick again. I said, What is this? And I was trying to fight that for a week. And then because you know, in your mind, I'm not 51 In my like, in my mind, you know, I'm like, Oh, I don't get sick. I get through things easy. It'll be okay. But we got some sort of rebound bronchitis from the COVID. So, I'll just say, I mean, I know the worst thing in the world, but Oh, it went on for five weeks. And then we oh

Anastasia 56:53
my god, we finally you sound like you're perfect. Now. I think you've kicked it

Scott Benner 56:57
out of your mind. I'm blowing my nose still. I'm on a I'm still on. steroids, the prednisone.

Anastasia 57:04
Oh God,

Scott Benner 57:05
I don't know if I'm really sick. I could still be sick and just jacked up on prednisone and not know it. I have no idea really. So anyway, when I'm talking I'm so cognizant of the fact that I think my voice sounds different right now.

Anastasia 57:16
Oh, well, it just sounded fun. Good.

Scott Benner 57:21
Oh, that's excellent. What do I want to know? I'm gonna make sure I have everything. You guys started the way you started. Your diagnosis is a really interesting, I didn't ask you about her diagnosis. me yours came because of trial that but how did you figure out that your daughter had type one when she was five?

Anastasia 57:41
Well, it was the classic. We went to see the Hannah Montana movie. My son lost that coin toss. It was just the three of us. My husband was traveling. And in that movie, I think I took her to the ladies room six times. And you know, when they're five years old, I thought well, she's bored with this movie. She wants a little walk to the snack bar to the bathroom. But she actually peed all those times. I thought, you know, after pre K tomorrow, I'm gonna take her to the doctor. She must have a new T i Okay. And that was the one so straight to the emergency room, five nights in the hospital and went home with a new word in our vocabulary.

Scott Benner 58:26
Your husband has to come home from his trip though. He did. He did not get the best of both worlds. No.

Anastasia 58:34
Nope. Came back and we slept in folding chairs in the hospital. Oh, there you go. Yeah. Yeah. Perfect.

Scott Benner 58:42
Absolutely. Alright, so let me let me do this with you. We should have done something like this before ease of use on the potter loop.

Anastasia 58:51
I'm gonna say loop because I'm on my phone anyway. I do a quick to them. And I Bolus however, is of fixed troubleshooting. Omnipod finds all the way

Scott Benner 59:08
up on the pod five, initial setup setup.

Anastasia 59:11
That was very easy, much easier than set up for loop

Scott Benner 59:15
level of understanding you have to have about diabetes to use one. Is there a difference between them? You need more for loop? You need more for loop? Okay, yeah, handling of tough meals, which is easier to do.

Anastasia 59:29
Loop? Yeah. Omnipod five, you can't extend a Bolus. So you are forced to put in Ghost carbs which can result in lows which is why I rarely but got low last night.

Scott Benner 59:43
That is what you ended up doing. So like with loop. If Arden has like a high fat meal. She might say well, this part of it is this many carbs but an hour from now I'm expecting an impact equal to 25 carbs. And then you could actually you can predate a Bolus, like you know your post I guess you posted it. That's what you posted a check. Right? You're right. You're right in. Do people use checks anymore? Does anyone understand this frickin reference? I do you do? We just figured out your 53. So, alright, so for those of you who didn't grow up broke and didn't grow up in the last 25 years, if you didn't have money in your account, you would write a check to somebody like today's the 21st. And I would say to them, Look, I'm not gonna have money in my account till the 25th. So here's a check for $100. But it's dated for the 25th don't deposit it till the 25th. And they can't you couldn't, you couldn't deposit a check that was that had a date in the future on it. It's called and it was called postdating. The check. So you can post data Bolus in loop by telling it Hey, right now I'm Pre-Bolus ng for 50 carbs, but an hour from now or 45 minutes from now, I'm expecting a fat impact equal to 20. Carbs are post date a Bolus, it puts it in the system. And then when the system sees the need, when it starts to see a rise, it goes oh, this is when they said the 20 carbs was going to come. And then the it makes the insulin available to the algorithm to use in a more aggressive way. Did I do a good job explaining that?

Anastasia 1:01:10
That was excellent. And it reminds me that we use that all the time. Like we tend to eat higher fat, lower carb not in a super strict fashion. But that I would I would be like it just reminded me I'd say I think that's about 25 Pizza. You know what I mean? Like meaning that I can't. So we did use that that you described beautifully? A lot. So not being able to use that is a little bit of an impediment to our control. But I also think it is learning. Yeah, you have to remember, and I don't know if Omnipod officially says that we are supposed to do that. So there's like a little

Scott Benner 1:01:52
Oh, you're definitely you're definitely not supposed to do that. But are they're not going to direct you to do it. But you I stopped you a minute ago. You You think it's learning? Do you think it's getting better at those fat spikes?

Anastasia 1:02:03
I am hoping that it will. I haven't I couldn't say that. Like yeah, I you know, I am also not like incredibly consistent, I'm not going to pull out a notebook and eat the exact same grams of food and then compare from today to the next day. I think it's it's like slightly improving. But like I said, I'm doing this kind of blitz I'm trying to correct as often as possible and help it learn. So maybe we'll have to do a follow up. Well,

Scott Benner 1:02:31
I'm very comfortable saying about on the pod five that it is easy to live with an easy to use. And it is a learning system. And you could see it getting better. I did not Yeah, I didn't start with the right settings for Arden. You know, as crazy as it sounds, we use that before I had those conversations to I should probably episode 736-730-7738 I think are to three part on the pod five, like get going thing that I did with on the pod. And this this great, great CD. And she and I like laid the whole thing out. And she she was actually great to interview about it because she had been involved in testing for Omnipod for years. So she had worked with countless families on on the pod five while it was in the testing phase. So she knew so much about it. Right? Had I heard those episodes? Or how Yes, had I made those episodes prior to art and starting. I do know where I would have been more aggressive in the initial setup to

Anastasia 1:03:29
write and I was in the same boat. I've listened to them. But it was kind of past when we've already started. So yeah, there you know, we'll we'll all keep learning. And I hope you'll have her back. And, you know, I'm sure they're getting a lot of feedback from their customers now. So I just

Scott Benner 1:03:45
looked at the first episode of it. And I don't usually say numbers here. But it's been listened to like 30,000 times. Wow. So hopefully somebody is getting something out of it. Besides micro I want you to do okay, or I want Arden to do okay. I want the space to believe in the algorithms so that they spread so that people you know, listen, I don't think this is lost anybody here a very well spoken lady named Anastasia your life is I'm guessing pretty good. And and there are people out there that don't have the kind of support you have. And they don't have. They don't have an understanding. They don't have an opportunity to get that understanding. They might never know what a podcast is. There are people who struggle with insulin all the time. And to think that you might be able to take an omni pod five, and boom, boom, put it on them. And suddenly with very little understanding of anything, having a one seeing the sexes as a magical idea to me. Yeah, yep.

Anastasia 1:04:49
I totally agree. Yeah.

Scott Benner 1:04:51
And it's not going to get to those people. The ones that maybe we could make the argument really needed the most. Until the call More of the community, the establishment, I guess you could call it really sees how to use these things, makes it normalized so that it spreads. Because once you're once a doctor says, Alright, everybody I have on Omnipod five is having a reasonably good experience, I'm going to take the risk of taking this at, you know, this, this person who has not shown a lot of understanding for diabetes yet, or maybe even a lot of motivation, like let me take the risk of putting it on them to see if we can, you know, balance out their health. And it's a long look for me, but I think it's important for people using insulin now and in the future for these things to be well understood. And used, you know. So anyway,

Anastasia 1:05:43
I agree.

Scott Benner 1:05:43
Thank you very much. Well, I appreciate you very much doing this with me. And I want to wish you a happy Thanksgiving. And

Anastasia 1:05:51
Happy Thanksgiving. I really enjoyed it. And thank you for all you do. Oh, my pleasure.

Scott Benner 1:06:00
A huge thanks to Anastasia for coming on the show today and sharing her story. And I also want to thank Dexcom for sponsoring this episode, and remind you to go to dexcom.com forward slash juicebox. Want to get tickets free tickets for the big event coming up in Florida. To see me at touched by type one go to touched by type one.org. And while you're there, check out all the cool stuff they're doing for people with type one diabetes. Don't forget to check out the private Facebook group and the public page both called Juicebox Podcast on Facebook. Thank you so much for listening. I'll be back soon with another episode of The Juicebox Podcast. And if you'd like to hear more about the bull beginning series, just hold on for two more minutes.

If you're a loved one has been diagnosed with type one diabetes, the bold beginnings series from the Juicebox Podcast is a terrific place to begin listening. In this series Jenny Smith and I will go over the questions most often asked at the beginning of type one. Jenny is a certified diabetes care and education specialist who is also a registered and licensed dietitian and Jenny has had type one diabetes for 35 years. My name is Scott Benner and I am the father of a child who has type one diabetes. Our daughter Arden was diagnosed in 2006 at the age of two. I believe that at the core of diabetes management, understanding how insulin works, and how food and other variables impact your system is of the utmost importance. The bold beginning series will lead you down the path of understanding. The series is made up of 24 episodes, and it begins at episode 698. In your podcast, or audio player. I'll list those episodes at the end of this to listen, you can go to juicebox podcast.com. Go up to the menu at the top and choose bold beginnings. Or go into any audio app like Apple podcasts, or Spotify. And then find the episodes that correspond with the series. Those lists again are at Juicebox Podcast up in the menu or if you're in the private Facebook group. In the featured tab. The private Facebook group has over 40,000 members. There are conversations happening right now and 24 hours a day that you'd be incredibly interested in. So don't wait. So don't wait. Check out the bold beginning series today and get started on your journey. Episode 698 defines the bowl beginning series 702, honeymooning 706 adult diagnosis 711 and 712 go over diabetes terminologies in Episode 715 We talked about fear of insulin in 719 the 1515 rule episode 723 long acting insulin 727 target range 731 food choices 735 Pre-Bolus 739 carbs 743 stacking 747 flexibility in Episode 751 We discussed school in Episode 755 Exercise 759 guilt, fears hope and expectations. In episode 763 of the bold beginning series. We talk about community 772 journaling 776 technology and medical supplies. Episode Seven at treating low blood glucose episode 784 dealing with insurance 788 talking to your family and episode 805 illness and ketone management. Check it out. It will change your life


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#961 Omnipod 5 Trial Experience

Scott Benner

Lauren's daughter has type 1 diabetes and participated in the Omnipod 5 trial.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon MusicGoogle Play/Android  -  Radio PublicAmazon Alexa or wherever they get audio.

+ Click for EPISODE TRANSCRIPT


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 friends, welcome to episode 961 of the Juicebox Podcast.

Today I'll be speaking with Lauren, her sister, brother, and now daughter have type one diabetes. Lauren's daughter did the Omni pod five trial. And she's here to talk all about that and much more. While you're listening today, please, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. Were becoming bold with insulin. Get five free travel packs and a year's supply of vitamin D when you start using ag one with my link, drink ag one.com forward slash juicebox save 40% off your entire purchase of cozy Earth products at cozy earth.com. I'm talking about bedding, towels and clothes all 40% off with the offer code juice box at checkout. Save 10% off of your first month of therapy at BetterHelp. And all you have to do to get that is sign up through my link better help.com forward slash juice box

this episode of The Juicebox Podcast is sponsored by the contour next gen blood glucose meter, you can find the next gen at all the contour meters at contour next.com forward slash juicebox. Your test strips may cost less on that website than you're paying right now through your insurance. Can you imagine that? Go check it out contour next.com forward slash juicebox. today's podcast is also sponsored by touched by type one touched by type one.org. That's where you want to go to learn all about this great organization. Their goal is to elevate awareness for type one diabetes, raise funds to find a cure and inspire those with diabetes to thrive. They have a an event coming up. I'm sorry, I'm talking and clicking at the same time they have their big event coming up the annual conferences on the 16th of September. In the Rosen Shingle Creek conference center in Orlando, Florida. Go to touched by type one.org. To learn more. I will be speaking at that event. I hope to see you there. If you're enjoying the show, please share it with someone else you think might also enjoy the Juicebox Podcast. And if you're listening online, consider finding a podcast app. They're free and a terrific way to listen. Apple podcast, Spotify, Amazon music and more. Subscribe and follow today.

Lauren 2:57
Hi, my name is Lauren. And I have a wonderful husband Jason and I have two children. So Vivian is my oldest. She is 14 years old and is a type one. She was diagnosed when she was 10 years old. And I have a younger son who is 11 years old.

Scott Benner 3:20
So Vivian's the type one. Yep. Does the younger son have any autoimmune stuff? No, he

Lauren 3:26
just has like, a little bit of skin issues. But that's it. And I did get the trial net for him, which was one of the scariest things ever. And he does not currently have the antibody

Scott Benner 3:39
he has like eczema or something like that. Yeah, he

Lauren 3:43
has. What's it called? starts with an S. My brain is in a fog. Don't worry, we'll figure that part of that. I'll think of it like halfway through.

Scott Benner 3:52
Does he have seasonal allergies bad?

Lauren 3:54
No, they're not

Scott Benner 3:56
good for him. I hope he's okay. Yeah, I

Lauren 3:58
know. Right.

Scott Benner 3:59
But did the diagnosed four years ago? Yeah, this came out of the blue for you or do you have other people in your extended family of type one?

Lauren 4:07
Okay, well, good thing that we have a long time to chat. So my brother and sister both have type one. I do not. So my sister is the oldest and she was diagnosed when she was eight years old. And I am admitting that she is 51 now, and my brother is the middle child and he was diagnosed when he was 11. So it's so funny because when they were younger, of course it was called juvenile diabetes. And so I always was waiting till my 18th birthday because I was like, I'm you know, once I turn 18 I'm not gonna get diabetes, but you know, now I know that that's

Scott Benner 4:46
that's you thinking that like, I just have to make it a thing. Oh my

Lauren 4:50
god. Absolutely. 100% So I grew up with a brother and sister and it was it's so interesting because the way A that we control diabetes now is so extremely different than it was controlled. Then, when I was younger we had no sugar in my house. Nothing. We didn't have any candy. No Halloween candy. It was a no fun house. So my mom used to take she used to buy Cheerios and Honey Nut Cheerios. And when she would come home, she would mix them right away because it was too much sugar in the honey nut cheerios. And I would say, you know, because I was the youngest. Well, can I have the honey nut cheerios? You say, Nope, no one can have the honey nut cheerios.

Scott Benner 5:42
Got a big metal bowl out and dumped a box of Cheerios and a box of honey nut cheerios, then mixed it up with their hands and put it back in the boxes. Wow.

Lauren 5:50
Yep, that was my childhood, we had nothing, there was a box of cookies that were stashed at the very, very top of one cabinet that I soon figured out that she hid for herself. And I used to go and steal a cookie every once in a while because it wasn't allowed. And the thing that's so interesting, and you know, I talked to my sister for this, of course, because we have a really great relationship. She used to talk about how she was always allowed to eat a ton of fruit, but no artificial sugar. And we used to always start our meals off with some sort of fruit, we would start off with like a grape fruit, or honey do, or cantaloupe. And that's how we would start our dinner. So even though it was a no sugar house, it was still a very healthy house, which actually has helped me in my adulthood. And, you know, when I had to leave the house, you know, for college, so I learned how to be a healthy person, but it was extremely restrictive.

Scott Benner 6:52
Okay. It's interesting. Do you have any idea? Why was she projecting health by starting a meal with fruit? Or was it something about the diabetes that she thought she was doing? Do you know,

Lauren 7:03
I'm sure she was just projecting health because I think I have a feeling that when she grew up, they always started off with like a grapefruit or something, you know, we had those special little spoons that would cut the grapefruit up into the little slices. So I think that was something that she did when she was younger, and that she just continued on. I imagine

Scott Benner 7:24
your mom for some reason in the backyard behind the shed where you keep the mower with a cigarette and that box of cookies. Just like no cigarettes. Just like I love cookies, these three kids got diabetes.

Lauren 7:42
It was the Milanos two was the Milanos. And I remember just like savoring my one cookie, and hoping nobody would see me eating it.

Scott Benner 7:50
Have you ever asked her if she knew you were taking them?

Lauren 7:53
No, I never did. So my mom's actually not alive anymore. And that's also one thing that I think diabetes was also very hard to manage, because she actually had breast cancer throughout my childhood. And so she got it when I was six. So think about having to juggle having breast cancer and having two kids with type one all at the same time. So I think in many ways, type one became a backburner. And because she had to, you know, really focus on staying alive. So well. So my sister is, you know, just extremely mature, super smart. And I think she was just like, Julie, you can handle this. And, you know, I'm gonna worry about me. And of course, like, she was an amazing, wonderful person. But my sister had to take on a lot. You know, it was it was a lot as a child and her what she started with as a young child, she really didn't see any differences in like using technology until she herself was like, I need to change because this isn't good for my body. So it was it was a lot.

Scott Benner 9:12
When you said your mom passed, was that a long time ago or did she? So the breast cancer and

Lauren 9:18
so she got breast cancer when I was six years old, and then it came back twice. It had metastasized to her liver, so she ended up dying when I was 17. Wow. So yeah, that's a long time ago that

Scott Benner 9:31
um, so it

Lauren 9:32
was a long time ago. Thank you. I appreciate that. Yeah, it was a lot. It was a lot to deal with with two kids with type one and then having, you know, a struggle. That was really difficult for herself.

Scott Benner 9:44
So were your parents married? Yeah, yeah. So okay, so Geez. All right. I'm sorry.

Lauren 9:55
My brain sorry, told me I'm supposed to make this fun and funny. So Uh,

Scott Benner 10:01
yeah, we'll start hard with breast cancer and then we'll just, we'll go into the fun stuff after that. Well, so your brother and sister have type one. But does that mean when you had kids? Did you think, Oh, my kids might have type one or Jude never think of it that way?

Lauren 10:16
No, I never thought of it that way. And so when Vivian was diagnosed, I was so surprised we were skiing up in New Hampshire, and that she had to go to the bathroom. And I was like, alright, well just click out of our boots, because we were at the base, and she couldn't hold it in. And she was in the fourth grade. And I was like, That's so weird. Like, that's just not normal. And the drive down to Massachusetts, where we live outside of Boston, it's only two hours and 15 minutes. And so she had to stop three times. So I called my sister the next day. And I was like, This is so weird. And she's like, I know. And I was like, maybe it's just, you know, yeast infection or something like that. And we went to the doctor's the next day, and I was just shocked. But I have to say, like, seeing my brother and sister grow up with type one, I was like, you know, what, they have lived healthy lives. They both have children, you know, my sister was able to have children. And they both went to top universities. So and are extremely successful people. My sister as a PhD, my brother is, you know, very successful in his field. So

Scott Benner 11:24
Mister has a PhD, my brother is not having.

Lauren 11:29
But there, and the thing that my sister says is like, she was probably high for her entire childhood, through high school, and she still was able to be a successful person. And that's what I think is so important to think about. We have this amazing technology that makes our lives so much easier. And so I think about, of course, I can handle this and, you know, because look at what they had to go through. And we didn't have any of that back then. No CGM. I mean, I can't even imagine what their levels were on a daily basis. And they're, you know, they're doing great.

Scott Benner 12:08
Well, I just just now while you were talking, Arden is the college and Fridays her sleeping day. So they she doesn't have classes on Friday. And I I'm assuming she's still sleeping because she was up late last night working on homework and everything. And her Dexcom numbers just disappeared. So I'm pretty sure that her CGM has lapsed, right like it. She needs a new one. And I texted her, I was like, Hey, is your Dexcom done? And she didn't answer me at all. She's still asleep. So I just texted my wife. And I was like, Hey, you got to reach out and try to find out what's going on because I think her CGM shot. But anyway, it is interesting, because up until then, you know, I don't think I've looked at Arden's blood sugar, maybe twice today. But when I looked at it, I looked at it, I watched them. I'm seeing the algorithm working, keeping your blood sugar stable, and all this stuff. And I'm like, Oh, that's great. Everything's good. She's sleeping in. And this is wonderful. And now I'm, I'm like, oh, yeah, I'm gonna wake her up and tell her to swap that CGM. Anyway, well, that's what I appreciate you telling me about the background, that's truly something actually, your sister doesn't have any complications. She

Lauren 13:19
was one of the first people to start a pump, which she was very lucky with. And so the problem now that she's having is, she has a lot of spots that she can't use. And so when she started on the pump, they're like, you can only put it in your stomach. And so she has a lot of problems absorbing insulin. So she's currently taking a pump break. And I told her that, you know, she should try to get the Omnipod five, but her insurance is not covering it. But that's the problem is the Dexcom slips off, and she was on the T slim, and it's just not connecting properly. So she has to, she's just gonna go through this right now and see how it goes. And maybe she could get onto the Omnipod. Five and find some new spots to use. But that's, that's the problem that she's having right now. And so it's, it's hard. It's really hard.

Scott Benner 14:14
Well, she said diabetes for? I mean, how long? 40 years? Maybe? Yeah, yeah. so and so. Do you think she was using the same sites over and over again? Or has she just exhausted all four possibilities?

Lauren 14:27
She's definitely used her stomach a ton, and she has spots that are hard. She even tries to use her arm and she's got very muscular legs. And so it's very hard to use those as well. Yeah,

Scott Benner 14:41
yeah. stuff. You don't think about that? For sure. Okay. So Vivian. Boom, has diabetes. Four years ago. You start with what technology four years ago?

Lauren 14:53
Well, so we are so lucky that we are part of the Joplin and Boston and they are just there. So amazing. She was diagnosed in December and we were lucky enough, they said to find it within one month, pretty much. And I can literally pinpoint the weekend when she said, I just, I just don't feel right. One month later, we were at Children's in Boston. And then right after that, we switched to the Joplin because we knew we wanted to be there. And our first first appointment A week later, they're like, do you want to Dexcom? We're like, sure. Well, let's go on a desk calm. And then three months later, we started on the pod. And we have been on it ever since? Yeah, it's been great. And then we were asked by our amazing nurse if we wanted to be in the trial. So it was started off as the horizon. And we did that for if I think January, I know the beginning of 2020 was when we started it. So she will literally be on Omnipod. Five for three years now. Wow.

Scott Benner 15:59
Okay. And that's obviously why you're here today. Yes. So let's talk about that. Don't forget to head to touched by type one.org To learn about the organization, and get signed up for the big event on September 16. Now, let's thank contour for making fantastic meters and tell you a little bit about them. Contour next.com, forward slash juicebox. I'm on the website right now. That's how fast it loads. It's lightning fast. Click the internet, just like that. I'm sorry. Can we start over contour next.com forward slash juicebox. Check out the contour next blood glucose meter, and all the great meters that carry the contour name. It's a proud family. And they all boast Second Chance test strips. Now, why do I care about that. So you get a little drop of blood on your finger and you come in there, you start to touch the blood with a test strip. But then I don't know. You get distracted, you pull it away, you drop the meter on the bed. I don't know what happens to you. But you don't have enough yet. You're not done, you're going back. Usually with your meter, you're gonna throw away that test strip, but not with contour meters. That's why we love these Second Chance test strips. Contour next.com forward slash juicebox incredibly accurate meters that are easy to hold, easy to use, easy to understand that if you want will pair with an app on your phone to help you keep track of your data. But if you don't want to use the app, you don't have to the light is bright at night. It is a perfect meter. It's my opinion. We've only been using it for you know, like four years. So why Listen to me. Oh my god, there's a bug on my wall. I'll be right back. Okay, I've dealt with the bug and I'm back. Don't worry, I didn't hurt it. I released it into the wild contour next one.com forward slash juicebox you need you want and you deserve an accurate blood glucose meter. That is easy to use. I know CGM 's are amazing, but you still need a meter. And it should be accurate. contoured x.com forward slash juicebox links in the show notes of the podcast player you're listening in right now. And links at juicebox podcast.com. To contour to touched by type one and all the sponsors. When you click on my links, you're supporting the show when you share the show with someone else. You're supporting the show. That's it. Don't get back to Lauren. Alright, let's do it. Bye bye, buggy. I'd like to understand what the trial was like. But moreover, I want to talk about using it every day for so long. So how long did the trial last?

Lauren 18:49
Almost two years because there were some glitches in the beginning. So we had to go off it I think for like a month or two months. I can't remember exactly. And it was very, very difficult to go back off and go back on the dash because we were sleeping through the night. I mean, it was really amazing. You know, we didn't have to do a lot of correcting, because the Omnipod would just do it for us. So yeah, but she was on it for that long. And insolate was pretty awesome about giving us all the supplies that we needed. So it was it was fantastic. And we we did different things like we did a diet challenge. We did an exercise challenge. And we had tons of phone conversations where they would just look at her information, all her graphing and say all right, well, I think we need to tweak this and we need to tweak this and see how this goes. So it was it was a wonderful experience. Wonderful

Scott Benner 19:49
is the system as it is now retail the same as it was during the trial.

Lauren 19:53
So when they had the glitch, I think that it was just producing too much insulin they did not gave me a ton of details. And that's why they had to fix it. And COVID had just really started. So we couldn't come into the office for the diet challenge and the exercise challenge. So we had to do everything in our house and just give them all that information.

Scott Benner 20:19
But yeah, okay, so you think the algorithm got off it felt to you like the algorithm got a fine tuning in the beginning?

Lauren 20:25
Definitely, it definitely did. And so

Scott Benner 20:27
basically, being on the on the trial just means what reporting back data telling them what she ate, what time she ate it showing them graph stuff like that. Was that was that it? Or was there more to it?

Lauren 20:39
No, I didn't even have to do that. I just had to, she just had to be on the specific pods. And we would have a phone conversation monthly. Or I would come into the office, but because of COVID. It was mostly just phone, and they would look at her numbers, and they would do any type of tweaks and go from there

Scott Benner 21:02
when they were tweaking. Were you aware of what they were doing? Or do you not even know what they did?

Lauren 21:07
Yes, because I had to change it in the PDM. Okay,

Scott Benner 21:11
so they were making settings changes, even though you were an auto Yes. And that made a difference. But now you're a longtime user, this changing settings impact auto?

Lauren 21:21
No, because they would no, no, they would maybe change like the carb ratio, or something like that. So I would just have to change something in it. Or they would say, you know, make sure that you're, you know, giving this much time before you eat and we Viviane went to sleepaway camp in between, so we had to change the settings because of that.

Scott Benner 21:44
Okay, so there's just very small tweaks to like day to day to day life. They're collecting did they have access to our CGM data? Anything like that? Yeah, yeah. Okay. So they clarity. Yeah. So they're seeing all that they get enough data to submit to the FDA, I guess. And then do you isn't there a moment where the study is over and you don't get it anymore?

Lauren 22:05
They were so amazing. So they, they kept saying it's gonna be FDA approved, it's going to be FDA approved, and it took so long. So they just continued to let us use it. And then, when they knew that they were going to stop the trial, they made sure that I had all of the updated the PDM that I had all of the updated pods so that I never had to transition back to the dash, that I had everything in place for her. It was fantastic. It was amazing. And they kept saying to me every time, we just want to thank you so much for doing this trial. And I said, No, no, thank you.

Scott Benner 22:52
I'm sleeping. Yeah.

Lauren 22:55
It was amazing. It was fantastic.

Scott Benner 22:57
So how would you describe Vivian's outcomes prior to Omni pod five? Like, where was everyone see, what did her variability look like those things?

Lauren 23:06
So she was probably at like a 7.0 or 6.8. And so now it is, it's she's at like a 6.3. Now, you Yeah, I'm very happy with that, you know, she's 14. And she hates to give herself insulin within the allotted time. So we really need to prep her about that. But she doesn't like take out her PDM at school. She doesn't like to prepare as much as maybe I would like her to so and Hannah, her nurse says, you know, Vivian, your everything is so beautiful in our settings. Like you just have to give yourself time before you eat. And that's the tricky part. Yeah.

Scott Benner 23:49
She does she do you think she forgets? Or do you think it's willful? Or like,

Lauren 23:54
how do you look like she just forgets? Yeah. Yeah,

Scott Benner 23:57
I think I think that's what happened. Yeah.

Lauren 24:00
Focusing can be a little tricky. So yeah,

Scott Benner 24:03
I don't think anyone thinks I should. Pre-Bolus right now, but I'll do it later. Especially like, it's funny. You keep saying PDM? Because you've used you've used I know, I know, I know. I'm not changing very much want you to call it a controller. But I I know, I know.

Lauren 24:19
I know. That's a big deal.

Scott Benner 24:22
But not the point. The point is that, I mean, I don't imagine your daughter's holding the controller and thinking I should be Pre-Bolus thing now, but I'm just not going to it just doesn't occur to her like she's busy and they get lost in what they're doing. I think that happens to everybody, not just kids. But

Lauren 24:36
yes. And also when we were in the trial, the Dexcom. The controller needed to be near her because the Dexcom was also connected in there. Okay, but now she has the phone that's connected with the ducks calm, so she would have to have to have her phone near her, not necessarily the controller.

Scott Benner 24:56
I listen, I sent on a text last night that said are you and affects this blood sugar. And that's just like what I'm doing. I'm doing my homework is was our first response and I went, That's fine Bolus and continue to do your homework. And she's like, okay, and it felt like I just snapped her out of what she was concentrating on. Yeah. You know, because the things beeping in her ear to she's not not, you know,

Lauren 25:21
well, one a tip that one of I think it was just a nutritionist at the Joslin told us to use an emoji, so that you don't have to say, you need insulin, you need insulin, because it's not a badger. So we just use a unicorn, as we always think of like unicorn diabetes. So I sent her three unicorns, and that's a reminder to take insulin. And I just if they say it's like a little less pushy. They see the unicorn. Oh, wait, I have to check my number. And then Vivian takes insulin.

Scott Benner 25:58
Yeah, I sometimes I don't always remember to bring it up. But you can look at your texts and read them a completely different way. Like you might just mean like, Hey, your blood sugar is high, do something about it. And it could get read on the other end, like, Hey, your blood sugar is high. Why are you doing something about it? Like that kind of thing? So and you're trying to live your life and just quickly dash off a text message to somebody? Yeah, that's a great idea. I like the unicorn idea. That's excellent. So

Lauren 26:26
good. And she said, she said, you know, you decide what emoji you want to use together. And so we looked at that. And we said, this one looks great. And so we know that that's, that's our code.

Scott Benner 26:37
Nice. It's excellent. Yeah. Very cool. So she's coming. You think she's, I mean, I have to tell you, somebody who just sent a kid off to college, it's a weird proposition. Like they leave and you're just like, I don't, I don't know. I don't know what they know. I can't see what they're eating. You know, like, it took us a couple of weeks to figure out how just terrible the food in the cafeteria must have been. Because she suddenly needed more insulin for meals were like, what's happening here? And then she finally told me one day, she's like that. I don't think any of this food is good. I was like, okay, she's like, she's like, it all looks great. And there's plenty of variety and everything. But she's like, I just, I'm basically just in a bad restaurant right now. And I'm like, okay, so she actually, we had to send her insulin. I sent her to school, with more than enough insulin to get her through the first 10 week period, she's in quarters. And she sent me a text like three weeks ago, and she's like, I'm gonna run out of insulin before I come home. So I was like, okay, so I contacted the doctor and had the doctor sent her a script and all this stuff. But it's, it's solely because of the foods that she has access to.

Lauren 27:48
Yeah, and that's the thing, actually. So Vivian has celiac as well. So she was diagnosed with that a year after, which was super surprising, because she didn't have as far as we saw, she didn't have any stomach problems, anything like that. But what I've noticed is that everyone that seems to get celiac with type one is asymptomatic. So you don't actually know that you have celiac unless you have a blood test. That what happened with that? Yeah, yeah. So So Vivian has to eat gluten free, and we've changed our kitchen. So that's also a concern when she goes off to college and a couple of years. Yeah. And that, of course, is totally different. Yeah, it's totally different with carbs and, you know, the type of flowers and starches that you use, because they're just a lot heavier.

Scott Benner 28:41
Yeah. And do you find that celiac friendly foods are often more carb heavy? Dairy? Yes. Definitely a bit about how they make them. Look, not to scare you. But Arden's not like, you know, some backroom college you don't I mean, like, she's, she's in a nice place. And I remember walking through there on the tour thinking, Oh, god, look how nice this restaurant is that they have set up for the freshmen, especially because my son went to a very old school. So, you know, a small, like, school has been around for hundreds of years kind of thing. And as soon as he got there, he's like, hey, the food here is terrible. Like really, like really bad. And I was like, Oh, come on, like, You must be kidding. And then they started sending us pictures of chicken that was pink and stuff. And he's like, how am I supposed to eat this? So he ended up supplementing his food all over the place, which was terrible, because you're paying, like, I don't want to shock people. But when you send your kids to college, the food and like dorm cost is usually around $14,000 a year, and no and you're like, and now he's like, I need money for food. I can't eat this food. Oh, and he didn't. You know, so you're like, okay, whatever. I mean, I guess this is what it is. And but then, you know, when we got to her school, and it was so nice and all the food looks so great. It was exciting. Eating. And then I, you know, in the end, it's just you're basically just at a restaurant. That's really what it is. And I don't know if they sprinkle like sugar, right on the food, you know, or what they're doing. But everything hits are harder. So I yeah, I'd be interested in know how somebody handles a gluten free diet to college would be interesting to hear about actually. So, anyway,

Lauren 30:21
yeah, I don't know. You're gonna find

Scott Benner 30:23
out. Okay, so on the pod five day to day for you. How do you just like if I, if I was just a friend, and we sat down for coffee, and I said, like, tell me why I want this. What would you what would be the first thing that popped in your head? Well,

Lauren 30:39
it's, you know, I have, Vivian hasn't been on the dash and so long, so you forget how difficult it was to be on there. So I can look at her number, and she will just progressively come back to her 110. So it's just it's so amazing. And sometimes I do need to give it a little kick in the butt at night. If she let's say we don't dose enough for dinner. But it always goes back to that one number. And she just started swim team. Okay, so and the activity mode is just, it is so amazing. So swimming is just it's tough. Tough work. Yeah. So we actually set it on the activity mode two hours before she starts swimming. And it can usually keep her above 70 For the one hour that she swims. Wow. Yeah. So and then oh, sorry, go on.

Scott Benner 31:38
No, just you, you said something earlier, I don't want people to get confused. But when you said like, we were using dash and it was so much harder. It just it's more intensive. Like it's like, it's like anything else. There's nothing automated, your your Basal runs constantly, like you have to make more adjustments. You're more involved. Is that? Yeah, that's what you mean. Right? Okay.

Lauren 31:57
So involved. Yeah, right. And, you know, I try my parenting style is we try and be relaxed, parents not too relaxed, you know, but to the point that we're not rigid, we're not on her case, if she is high, we we look at it, we decide what we want to do, if it's best to take action, and give a little bump of insulin or let it drop on its own. So we, you know, we want to be relaxed if we can. So it doesn't, it doesn't usually for us. So we don't have to, you know, push it. And sometimes we do push it too much. And then she goes low. And we learned from that. But I have to say after listening, I don't remember which one which podcast, it was from you that talked about not being scared to be low. Because my husband, he's so involved as well. But he would always get very, very worried about loads very, very worried, like, take a tab, take two tabs, you know, and then she would shoot up. And I said, I'm like, you just you have to take it easy, you have to watch it because it cuts the insulin off, you have to remember, if it's at 69, it's going to cut it off. And then you're going to give her a tab and she's going to shoot way up. So he's finally realizing it's okay, it'd be a little low. And let's go, we're gonna take a breath, and see where it goes from that. And that's again, one of the great things about the device is that it looks at the number and decide what to do.

Scott Benner 33:34
It's been really interesting for me to watch you all online learn about algorithms together. And, and I keep hearing people say over and over again, I've noticed that I don't need as many carbs to treat a low on on the pod five as I did previously with the way I was doing it. And it's it's interesting that that's the way people think about it, I guess that that's why they would think about it that way. But the truth is, is that, you know, if you're in a regular pump, you're getting your Basal every hour, just it's happening constantly. And if you end up low at three o'clock in the afternoon, on a you know, a pump that's not automated, and you or you end up low at three o'clock in the afternoon on an automated pump, how you got to that low are two completely different things. So when you're on an automated pump, that thing is seeing the low coming in the future. And it's just taking away insulin, like taking it away. So for an hour, an hour and a half prior, you might have no Basal going or something like that. And then a tiny bit of sugar, just boom, shoot you right up again. Whereas on a regular pump, even, you know you end up at that low but for the two hours prior to that you'd still whatever your Basal rate is every hour you were would be getting it unless you manually stepped in and took it away yourself, which is, you know, what I was doing before Arden was you know, using an algorithm and it's very intensive because when you watch the algorithm work you can see how frequently is making decisions is that God? Was I doing stuff that often before? You know? Like, it's crazy to think about? I hope everybody who can afford it finds it like algorithm farming in general. It's a really big Yeah. Yeah. That's cool.

Lauren 35:14
Yeah. It's, it's amazing that I mean, I just I feel so lucky to be, you know, on the to have the van on the five. And for sure. It, it's just it's, it makes her life a little more normal. Right. It's great.

Scott Benner 35:29
It's interesting that you're like, you're the more in the low situation. You're the ones like just wait, and your husband was the one that like, usually it's flip flopped.

Lauren 35:38
Yeah, yeah. Yeah. But that'll happen at night. And she'll be at like, 69. And I'm, and I just say to him that it's around, like, like nine o'clock at night. And I'm like, Just wait, just wait, let's, let's see where it goes. And it'll go to like, 67. And I'm like, Just wait again, just read it again. So, and then it usually goes up. And then and then we're set for the night. We don't have to wake her up. And it's really fantastic.

Scott Benner 36:02
See, you'll hear me talk in other situations where I'm like, you know, the way you treat a low blood sugar has a lot to do with what kind of low it is. Is it like a drifting low? Is it like just sitting low? Or is it falling fast, you know, with a bunch of insulin behind it. And it's it's so if you if she was falling fast, you would do something at 69

Lauren 36:21
ABS? Yeah, if she was falling fast. And the other thing that is we use sugar meat. And so I actually set it up in my room as a nightlight. And so I turn my turn my phone sideways, and I set it up so that I can see her number. And the other night, she dropped 20 points. And we looked at that, and we said 20 points, because it'll actually say the number and it'll say minus 20, or what the drop is or what the how much is going up. And my husband was the one that said, I don't think that she would have dropped that much in so quickly. And so I just pushed her over. And it was just a compression low. And I didn't do anything. We waited till you know that we saw the next number and realized that it was and so if we had treated it, she probably would have shot up like crazy. But we just, you know, it's all about the process. Right? You have to just be able to stop and think and not pounce.

Scott Benner 37:22
Yes, no. I mean, the first time you see a compression low on a CGM, it scared the hell out of you, that's for sure. But after you've seen it a couple of times I call it that feeling from your husband. I completely understand like the you start going over in your head, like there's no act of insulin right now, like doesn't make sense that she would drop that fast, like from this, like, maybe she's just laying on the center. And by the way, maybe when the g7 comes out, maybe compression lows won't be as frequent for people so so Yes, that'd be exciting. Well, that's

Lauren 37:49
very exciting. We're definitely what we weren't allowed in that study at the Joslin, we did it in a week, you weren't allowed. No, I wasn't asked to be in that one. So

Scott Benner 37:59
if you just show up on the other one, that would have been great.

Lauren 38:03
But I also have to say they're also doing another study right now. It's called Die buddies. And it's so exciting because it's just you can choose a peer or someone that else has died, that someone else that has diabetes, and you just create, it becomes a friendship or mentoring situations. So we're doing Matt now with a VN. So we're just trying to make her a healthy, healthy person physically and mentally. And I just hope that other people are doing this as well just to create a community and I know that you're creating a community. And so it's nice. It's really, it's so important to think about their health, physically. And also mentally, you're actually

Scott Benner 38:41
doing a study where they partner you up with another type one to see if it benefits your health. Yeah, that's really cool. That's a great, yeah, I'm actually I've done that study already, right here. It's called this podcast, but I give you the data. When people talk to each other, it goes way better. There's a whole I was gonna say underground, but that makes it sound seemingly, but that I didn't, I didn't realize at first that people were meeting each other in the Facebook group, and then creating their own relationships that I don't see in the Facebook group. But that apparently happens frequently. So I think great. Yeah, it's a similar idea. But that's a really great thing that they're doing that as a study. I can't Yeah, I'd be interested to hear what what comes of that. How long did they do that for?

Lauren 39:24
Well, we were just interviewed this past week. So we're waiting for our match, but it's going to be a six month study, six month

Scott Benner 39:30
study. Okay? They're setting it up like a dating app. They want to make sure you're gonna get along. Yeah,

Lauren 39:35
that's really cool. Yep. So she wants to meet someone that is her age. She, you know, she could have chosen someone younger, to be a mentor, and they wouldn't have had anyone older than I think like 17 with her, but she wants to be with someone that's 14 or 13.

Scott Benner 39:53
So she's 14 Does she I hate to say I'm so sorry to ask you, but she gets her period.

Lauren 39:57
Yeah. Oh, and that's the other thing. So I remember so she was on. She was in the trial when she got her period. And I remember emailing the nurse, because my sister had said, once Vivian gets her period, you know, you're gonna have to have a whole different setting set up in the controller. And I emailed the nurse, and I was like, Vivian just got her period, we need to talk because we have to change all of her settings for it. And she's like, Nope, no, you don't, you're not touching it, because it will do it for you.

Scott Benner 40:27
And that's your binding. It's working. Yeah,

Lauren 40:30
we don't change anything.

Scott Benner 40:32
That's really terrific, really is. Yeah.

Lauren 40:35
Well, and even when she's sick, too, to I mean, we just add in a little extra insulin if needed. And, you know, we just follow protocol.

Scott Benner 40:45
Just let me slip this in right here learn Omni pod.com forward slash juice box. If you're interested in learning more about the Omni pod. I need the clicks. Yeah, I got it. Alert. It's a it's a real thing. The you might not realize it. But if you don't have advertising, you can't keep a podcast going. So you guys are like, Oh, I'm gonna definitely get that just get it with my link, please. Doesn't make me rich or anything like that. It just keeps them buying ads. You know what I mean? Like, I don't get paid every time one of you buys an omni VOD. But it definitely makes it easier. Forget Omnipod any of the advertisers This is, by the way, it's this time of year for me. So it's so at the top of my head right now, this is the time of year where you go back to your advertisers and say, Hi, here's what we did this year together. You know, here's how the podcast has grown. Are you interested in doing this some more? Because it's such a scary thing? Because if they go, no, no, we're done. Thank you, then you don't get the podcast anymore. And I by the way, I have to go get a job. And so which I don't know what I'm qualified to do anymore. And I don't think I've looked on LinkedIn and podcaster doesn't pop up very frequently. So but but it's a it's a very weird, like anybody who has their own business? Or does I mean, this is basically sales in a weird way or does sales for themselves? You know, that feeling of like, what happens when they say no, you know, like, what happens when they're done. And I think if I'm not mistaken, everybody's back in for 2023, which is completely to do with the fact that you guys listening, use the links, either to look at the stuff or to look at it and buy it. And it's what keeps the podcast coming. So I appreciate it.

Lauren 42:26
That's great. I want to look into that G vo hypo pen,

Scott Benner 42:29
G voc hypo dope. Thank you. You're welcome. That there, I would definitely get yelled at. So, you know, we just did a whole episode about that. It's not out yet. Jenny and I did it together in conjunction with the VOC actually, because I said to them, I just don't think people know how to use their, their glucagon. I don't think they know, I oftentimes I don't think they know why it's important. Oftentimes, I don't think they carry it with them. You know, or they think they know and then you know, the hits the fan. And it turns out, nobody was paying attention, like that kind of stuff. So we did this did this episode together to really like walk through what the pen is how it's built, how you use it, you know, and I'm, I'm proud of it. I can't wait for it to come out because I interviewed a woman recently who needed a rescue device. And her husband was not all that helpful when she needed him to be like he got through it. But he it was became clear afterwards that he he kind of didn't understand the bigger picture. So anyway, I love very scary. Yeah, no, it's terrible. I genuinely, I mean, I went after G voc for ads when it came out because I saw the form factor. And I thought, oh, I can actually send this with Arden. Like she'll carry this. This will really be helpful, like her friends could handle this. That's how it made me feel. So

Lauren 43:53
that's great. Yeah, we practice on the expired ones. The lily hit the red box. Yeah, we practice on the expired. We use the expired ones,

Scott Benner 44:02
they are gonna stop masking. They're gonna stop making them in a month. Really? Yeah, there's a date in December 2022. I think that's the date. And that's it. They're not making them anymore. Wow. So pick a new glucagon. Yeah, okay. And that, I mean, that makes sense to me. When you look at how that works, you know, you pull out that set big syringe, and then that's the liquids in the thing. And you have to think Don't you have to twist it on and then you have to put the liquid into the powder. And then you have to mix it up and you have to draw the liquid back out. Then you've got to like jam it like the muscle and your button. It's like a lot, you know, and now I actually have a trainer pen in front of me from G voc and he just you like it's a red cap. You pull it off, you go to the skin where you're supposed to do it, you press the yellow thing, do your thing. And that's it. It's over. You know, like, that's amazing. Yeah, that's a long way from mixing liquids. I mean, can you imagine if you and your if your daughter was out with her friends, there's a bunch of four 18 year old girls. I mean, what are they gonna do? You? Don't I mean, 14 year old boys 1414 year old kids like, I don't know, I didn't know what's the first time Arden needed it. So I don't know what kids are gonna do. But anyway, it's

Lauren 45:12
very scary. Very scary.

Scott Benner 45:14
Okay, so tell me why you wanted to come on? Like, am I covering it? Or have I not gotten?

Lauren 45:20
No, I just think that I just wanted to talk about my experience. And I just want people to realize how lucky we are to have the technology and the resources that we do now. And the communities that we have, because it wasn't like this, when I was growing up, you know, they, they didn't have the resources, they didn't have the technology. And my brother and sister are doing great. I mean, there's they, from what they had from my sister going on one shot a day, you know, using cows, pigs insulin at that time. She's doing really wonderful. So I think we just have to thank our lucky stars for what we have now. And realize that it can, it can be okay

Scott Benner 46:08
to build on it too. Right? Like, because I mean, as well as your brother and sister are doing, they must wonder, like, what if I was diagnosed now with algorithms and, you know, they mean, like, you're never going to know, but your daughter's going to know me it's going to be, it's going to be 40 years from now, one day. And, you know, your daughter is going to be sitting around telling stories about you. And, you know, her diabetes, and hopefully her kids won't have it, but they might write like, you know, who knows what they'll, what they'll manage with at that point?

Lauren 46:43
I know. Yeah. So. And we just, you know, the thing that I also have realized is, when Vivian was diagnosed, that it's always it's always okay to be upset, and you know, to have a little cry, but I feel like, everybody's got something. And that's what I think everybody needs to realize. And even though you might not physically see things that people have, they may have things happening emotionally and mentally, and everybody's got something and so you can feel sorry for yourself, but you just have to push through and know that everybody at some point is going to go through something, and we just have to be appreciative of the things that we have. And you know, just try and be our best selves.

Scott Benner 47:31
Do you think you learned that from your mom, from her situation?

Lauren 47:35
I do, because she was always an extremely positive person. And I mean, she was going through cancer treatments and still working every day, as you know, an elementary school teacher because she, she wanted to be with the kids and she didn't want to be sitting at home. So I saw how she pushed through and never ever got upset. She just always had a plan. She always had goals. And so I just think it's important to never sulk. It's okay. I mean, it's always okay to like have a little cry. But even leaving, you know, children's, after Vivian was diagnosed with diabetes, and then celiac, you look around and you say, You know what, we can handle this, like, we can do this as a team together and look at all the positive things that we have in our life, and we're gonna push forward. So I just always try and think about the positives. And, you know, try and not be that Negative Nelly, because it's not, it doesn't help anyone. It doesn't help anyone to be a negative person. Just try and push forward. Think about the positives and lean on people. Yeah,

Scott Benner 48:43
I have so many people on that have problems well beyond diabetes, and to hear their attitude. I'm always like, Wow, that's amazing. You know, I there's an episode that will be up probably before this comes out. But I don't know, with a with a woman who's a quadriplegic as much as as a younger woman, and it's from a medical mistake on top of all that, and then she gets type one, like a year or so. I mean, crazy. Good. You know, when

Lauren 49:13
I saw her, I saw her on the web on Yeah, yeah. Well, we

Scott Benner 49:17
were we've recorded together. And I mean, when when you talk to a person who is a clod who is still out, like, on like, rides, like out riding bicycles, and you know that they're obviously modified for her, but then she tells you that she has to, you know, herself, manually put something in her. So she can defecate, like, you know, like, you're like, wow, what am I arguing about? Like, what is it I'm complaining about today? Exactly. And she's not complaining. You don't I mean, like, she's not telling the story. Like hear you want to hear something terrible. And I'm busy, like, you know, I'm like, I got COVID I'm coughing a lot. Pitching every day about it. Like I I went into a, my wife who was sicker than I am was like, I don't care Shut up. But I'm like, why do people even need to be sick? And she's like, What are you talking about? She's like, if you want to philosophize about this, go on your freakin podcast and talk to people about it. She's like, Stop telling me that I'm like, like, why do we even get sick? Like, why does that happen? And she goes, Well, Scott, you know why? And I'm like, I know. But like, like, big picture, like, this is an argument against the Creator, by the way. So like, like, Why do I like why does your mom get breast cancer? Why does you know, why does your daughter get type one and celiac? Like, why does my daughter have type one and have trouble digesting food and have to take a thing to help her like, like, all that stuff is just, it's horrible. I don't know right up until you hear a girl tell you about her suppository, and then you go, Alright, I guess I maybe I should shut my mouth. You know what I mean. And I used to have that feeling. You brought up the Children's Hospital. When Arden was first diagnosed, there were no satellite offices for her children's hospital, there are now in gratefully we don't need to go all the way into the city anymore. I'd walk in there. And I was in charge of all that, like, I would take art and offer appointments. And sometimes I would tell my wife and like, that place is so freakin depressing. You know, there are so many sick kids in there. And it's not just diabetes, it's like so many other things, and so many other floors. And then I just I learned not to think of it that way anymore. Like, I stopped thinking of it as like, Oh, God, they're sick people here and I started thinking about it more like, these people are still all living their lives, you know, and they're doing things right. You know, I see it that way now. And

Lauren 51:32
these amazing hospitals are there to help them get well, as well as they can. And that's, that's what I think we have to think about, like how we can push above and, and make ourselves better. And that's, that's what I'm trying to do for Vivian. And I'm trying to make her a strong person who advocates for herself. And you know, and I said to her, I said, you know, childhood can be tough, but this is going to make you a stronger person, it's going to make you a stronger adults. And that's what we have to think about how can I advocate for myself? How can I be better? And and that can be tough. But we have to use the tools that we have to to do that.

Scott Benner 52:10
No, it's a great message. I really I appreciate you coming on and sharing it with me. Am I missing anything else? I want to make sure we're not. I'm not missing anything for you. I know. We

Lauren 52:19
know. I mean, I wasn't as funny as I was told to be. Well, not funny at all. But my friend Sarah was just too so excited. She wanted to be the person that was chosen.

Scott Benner 52:30
Wow, did I I did set up a number of different on the pod five conversations. So I've been recording them over the last couple of weeks. And now I'm going to try to like put a gap in between but I mean, you are just a slam dunk because Vivian has been using it for so long already. Like if there was it mean, the fact that you are not in any way tied to Omni pod. And and she has been using it for three years. And I tried 1000 different ways to ask you questions it could have led you to say like, I hate that thing. Right? Does this wrong? Yeah. You feel anything? Yeah. No, it's amazing.

Lauren 53:05
And I see that some people put online, they're like, I hate the five. And I'm just like, I love the five like it is amazing. It is. I can't say any anything more positive about it. I just I love it so much. I mean, I will hope you know, hopefully there will be something better and you know, a couple of years. But this is this is so fantastic for us. And it's our normal it's, it's great.

Scott Benner 53:32
Aside from Omnipod five, just technology in general or even using insulin there. I mean, I just answered a, I just answered a post online. And the it's a 24 hour graph that just goes from like, it goes from like 50 to 400 over and over again. And the person is just like I said, I give up. And I look and I think yeah, your settings are wrong. You're not posting right from meals, I couldn't count. I don't know anything about you. And I can see that much here. But they don't like that's not how it hits you when it goes wrong. Like when you can't get your CGM to connect or when you like have a problem with technology or whatever you don't think like I'm probably not doing this right. Or maybe there's a variable at play that I'm not aware of. Or maybe I'm not hydrated, and that's why my CGM doesn't work. Nobody thinks that they just look at the thing and they go this thing sucks, doesn't work. And it's just, you know, like, I'm not saying that there aren't some people who have those problems that might, you know, legitimately have that outcome. But for the grand, you know, for most people, I hate to say this, he you just you're doing something wrong. You know, and you got to figure out what that thing is. And I know that's easier said than done. But that's I think is the truth.

Lauren 54:41
Well, and when we first started in the trial, they're like, just let it work. You're not going to touch anything. We couldn't make any adjustments. We could not give any extra insulin they're like you have to let it learn your body. How so that

Scott Benner 54:55
that time was for Vivian the learning

Lauren 54:58
at least a month I think I mean, it was so long it was so long ago, during the whole trial, they said you cannot touch it. Unless I remember in the very beginning, we were sitting in a car ride, and she was just going so high. And so I called the doctor and I said, I don't know what to do, because you told me that I couldn't touch it. And she's like, okay, you know, we're just gonna give it a little bump, a little wake up call. And so sometimes we were able to do that, we would just kind of give like a little bit of insulin like a unit, just to be like, Hello, are you here? And and it would work?

Scott Benner 55:31
Yeah, we'll see you were in the trial. So you had different like marching orders, but the people who use it now when they're training it, the commonplace, right? If your blood sugar goes up, you give more insulin, so that the algorithm learns like, wow, I need my total daily insulin is more than what I expect here. Right, which is, that whole algorithm is based off of total daily insulin. Like that, right? That's kind of the measurement it, it's thinking about when it's making decisions. So that's amazing. Do you think if I asked Vivian about it, she'd say anything? Where do you think she just be like, it's fine?

Lauren 56:06
I think I think she really, she realizes how great it is also on the fact that like, at one point, she didn't want to do the diet trial. She didn't want to do or, you know, though, there were some sessions that we had to do with exercise. And they said, Oh, that's fine. You know, we don't have to do this. Let's just go back to the dash. And she's like, Oh, okay. Well,

Scott Benner 56:28
well, then in that case, so she knows. Yeah, I've, there's always little moments with Arden where you'll you know, more recently, I saw it with this. She's taking a digestive enzyme when she's eating, which is really helping her. It was, I don't know, a few weeks into me being like, you have to take this everyday. Just do it. Because we're seeing how it works, you know, and then one day, I think I've said this already, but Kelly and her were going out to they were gonna go shopping and look for stuff for college. And they were gonna get lunch, and they left the house. And then like, two minutes later, Arden came running back and she was like, I forgot the enzyme. And nobody reminder about it. She was she she knew this is important. And I'm seeing I'm seeing the benefit from it. That's when you can tell they know. Yeah, kids are just like, you know, they're blase. Like you're all excited about it. She's probably like, I was sleeping fine. No matter what. That lady and her husband were up all the time.

Lauren 57:23
Yeah. But now that she's 14, we talked about how she's really has to start being more accountable for herself.

Scott Benner 57:30
Yeah, no Arden's taking care of herself at school, overnight and everything. And it was interesting. Like, as she lived here, before college, she'd be like, I don't hear it. Like that kind of thing. Like, I don't know, you have to help me. And then the minute she got there, she's like, I heard it. You know, like it, there's still some nights she gets. I mean, I'm not gonna lie, like I pay attention to it for you know, I texted her last night. I said, I woke her up and I was like, You're high. You need insulin. I've, you know, I've texted her and said, Hey, I think you're gonna get low and she doesn't answer my call, and I wake her up. But it's only happened a handful of times. And there have been times that she's woken me up and said, Hey, I just drank a juice. I wanted you to know I'm okay. So I'm like, Oh, that's great. That's really cool. So,

Lauren 58:14
yeah. And when Vivian was is at sleepaway camp, she has to really take care of herself with the help of the counselors, but she can hear those alarms. I can hear them when she's in her bedroom upstairs. Is

Scott Benner 58:27
that a diabetes camp or just a regular camp? Just a regular camp?

Lauren 58:31
So she tried to diabetes camp, but it just wasn't for her.

Scott Benner 58:35
How long should I wait camp when she goes?

Lauren 58:39
Four weeks? Nice. Yeah. And my sister went to diabetes camp. You know, 1000 years ago in New Jersey, she went into Jetta. So she still talks about how that was a wonderful experience for her.

Scott Benner 58:50
Yeah, every every person who's 3040 50 years old, who has had diabetes for a long time, who comes on and talks about camp, they're like, they still know people from there. And it was their that was their whole diabetes circle. At that point. People you met for weeks at a camp and said it's a great idea. I mean, it very similarly is the is the the trial that Vivian's in right now, where you get a buddy, you know, so it's same. Right?

Lauren 59:13
Right. Well, Vivian also had two other boys in her grade at school that had diabetes. And it was wonderful because she came in back from the hospital in the fourth grade, and one of her classmates is a type one. So all the kids already knew about diabetes, because the mom came in and she did a whole lesson for the kids when they were younger about him, and diabetes. And so then when she moved into the middle school, there was another boy and he had type one. So she's like, Hey, I got a crowd. I have, you know, it's three of us.

Scott Benner 59:50
We're almost up to a basketball team. They get shaky at halftime.

Lauren 59:54
I know. But both boys left they went to private school. So now she's the only one Wow,

Scott Benner 1:00:00
that sounds I'm sure she'll meet more people not that sounds like I'm like, Oh, don't worry. People get type one and your daughter will meet. Add to this crowd. Oh, that's wonderful. All right. Well, I really appreciate you doing this. Thank you so much.

Lauren 1:00:13
Thanks for having me on. I hope it was helpful. It was helpful. It really was. Did

Scott Benner 1:00:17
you? Do you? So I know you said you thought you had to be funny. And you don't think you were but yeah, I think you're funny in your regular life.

Lauren 1:00:24
I do. I do. My husband's super funny. So I think I'm a little clever. My son is super clever. And he gets it from my husband's side. But I like to be funny. I like to have fun. You want to tell? Again, it adds just, it just adds, you know, more positivity and helpfulness. Yeah, my son gave me a joke, but it wasn't funny at all. But you know, what he did is because he, he went on to my Facebook, and he would find pictures of himself and go on to my account. And he right, my favorite with a heart of his, you know, with his picture. And so I was like, oh, you know, that's funny, haha. And I would make like a comments in the bottom. And my mother in law, her friends and her sister were like, I can't believe Lauren. Like, she's so rude. Like, poor Vivian. Like, how can? How can she post all of these photos of you know, her son and how he's her favorite? And I was like, Are you serious? Do I really need to post something that says, It was him? It wasn't, you know, me. And a lot of people even some friends texted me. And they're like, I really thought that you were posting those photos, Jonathan. And saying that he was your favorite. And I'm like, really? And there was like misspellings and everything.

Scott Benner 1:01:49
You can't tell us as a child. What you think of me? Yeah,

Lauren 1:01:53
but my thoughts our family roles. Yeah.

Scott Benner 1:01:56
My friend Mike, who I've talked about on the podcast number of times when we were young and growing up, he had an uncle named Frank. And Frank had a way of telling, like, big, long, bad jokes. And the jokes weren't funny. But he was incredibly funny. Like he would I could tell I'm not gonna bother you with it. But there's a joke about a three legged pig that he would tell. That is, it's not funny, but so entertaining to watch him tell it. And I remember as a kid, we would try to like retell the joke to people. Because if you could get people interested, or actually make them laugh, and they weren't laughing at you, you were doing something because the joke itself was just not good. He used to tell this. It's so dirty. I can't tell you it's about a piano player. But there's no way for me to say it here. Like it's just so full of vulgar words. But again, not a funny joke. And long and boring. And it like, it's there were times where you're like, is this gonna end? Like the joke but not him telling it him telling it you could have listened to for an hour? So anyway? Alright, well, anyway, I thought you were terrific. I don't know why anybody told you. You needed to be funny. I thought you were. I appreciate Can you hold on one second for me? Yeah.

An out of work piano player walks into a bar. Now I can't tell you that joke. I just can't, I could tell it. First of all, I wouldn't do Frank any justice. And secondly, the whole thing would just be beeps for like eight minutes, take me longer to beep it out than it would to tell it. Let's thank contour. And remind you to go to contour next.com forward slash juice box to check out all the contour meters. I want to thank touched by type one for being longtime sponsors of the Juicebox Podcast. And of course, I want to thank Lauren for coming on the show and telling us that terrific story. Thank you so much for listening. When I have more to say, I'll wait till after the music

I just wanted to tell you about the private Facebook group, which has 40,000 members in it and remind you that you need some community around your diabetes. And my Facebook group is the place Juicebox Podcast type one diabetes. Now that's the name of the private group Juicebox Podcast, it's actually a little colon then type one diabetes. Now even though the word type one diabetes in there, there's type twos there. There's lots of others, actually. ton of people kind of 5050 between caregivers and adults. Beautiful group. It really is. It's it's a great place. I hope you check that out. Then there's a page Juicebox Podcast the page is the public thing. That's something anybody can see the group you have to answer a couple of questions to become a member of so that you know we can prove that you're a real person. But follow the public page. Join the group. This is a good way to keep up with the podcast. All right, and Don't forget to subscribe and follow in an audio app, Amazon music, Apple podcasts, Spotify, stuff like that. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. If you're interested, I left the few minutes that Lauren and I spoke before we started recording, mainly you're gonna hear about my COVID and some stuff like that each other most of the time anyway. So both of us trying not to pass our illnesses back and forth to each other. Yeah,

Lauren 1:05:29
I heard that's, it stinks. It just actually Vivian had. We had COVID, a couple of years ago, and she actually had was in hospitalized, hospitalized six weeks after she had COVID Because she got mi FC, which is multi inflammatory, this condition. And so what it does is it affects the heart and lungs. And so we were up in New Hampshire, because my, my son is on a race team. And so we were up there and she had a fever and the doctors like just give her Tylenol, Advil, she didn't get better. And she had this horrible fever, we rushed her down to the ER. And so it affects the heart and it affects the lungs, but she's fine now because we got her there, you know, in enough time, but it was

Scott Benner 1:06:20
really, I woke up this morning, and my wife was propped up in bed. And I was like, did you sleep? And she's like, not really. And she's had it for like, like three or more weeks. Like she got it. They gave her some drug that knocked it down. And like six days into it. She's like, Oh my god, I'm better. She was testing negative. She's like, This is crazy. Yeah. And then we let her back into the house, which was our mistake. Because then like a day and a half later, she's like, I don't feel good again. And then by then my son and I were like, oh, like so then we started feeling weird, like for a week off and on, like having those moments where I'm like, am I getting sick? And then as it got no, I'm not. I'm good. And then he felt the same way. And then we both got sick on the same day, like two weeks ago tomorrow.

Lauren 1:07:06
I think sometimes those medications, they extend it because then you can get like, you know, it can come back.

Scott Benner 1:07:12
Yeah, she she she researched it more now and said I wish I wouldn't have taken that. So, right. But my son and I have gone through it. We're still like start coughing out of nowhere, your throat gets really dry for no reason for like, 10 minutes, that's gone. You're like, what, what the hell was that? You know, like that kind of stuff. I recorded an episode three days into COVID that I had to record. It was like a business thing. And I mean, I was on a call with six people. And I looked like I was kicking heroin while I was doing it. Like I was just like, like, it was like pouring, like, like sweat was just pouring off of me the entire time I did it. And other than that I was okay. Like, you know what I mean? It was just the strangest thing wasn't coughing. I wasn't sneezing. My head wasn't congested. I was just I was sweating. Like I was in an oven. And the people I know must have been looking at me like, Oh, my I tried to stay a little stressed. Yeah, I'm like, I'm like, I'm sick. And they're like, Okay, you're sure? Sure you just haven't been away from the needle too long, buddy. Because it was really something. Anyway, thank you introduce yourself anyway, you want to be known. Okay. And then we'll start talking and then it'll be over.

Lauren 1:08:20
So I don't have anything else that I need to add or talk to you about before we start.

Scott Benner 1:08:25
No, we'll find out while we're recording. So people learn it together. Okay, all right. Sounds sorry. Okay. So don't need to use your last name. Don't feel pressure about that. But just Yeah,


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