Scott Benner 12/27/21 Scott Benner 12/27/21

#601 Gina Made Me Loop

Gina dared me to Loop and she has a child living with type 1 diabetes.

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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. Jeez. Try that again. Hello friends, and welcome to episode 601 of the Juicebox Podcast

today on the show I'm going to be speaking with Gina and Gina made me loop. I think that's the episode title Gina made me loop. Yeah, that's what I'm gonna go with. Anyway, my daughter uses a do it yourself algorithm called loop. It is not from any company, it's available on the internet. And a long time ago Now Gina pretty much dared me to try it. And that's the story you're going to hear today plus other conversation. Please remember while you're listening 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 healthcare plan, or becoming bold with insulin. Don't forget to head over to t one D exchange.org. Forward slash juice box and fill out the survey. If you're a US resident who has type one diabetes or care for someone with type one, this survey will take you less than 10 minutes. It's completely HIPAA compliant, absolutely anonymous, and supports people living with type one diabetes, as well as the Juicebox Podcast.

This episode of The Juicebox Podcast is sponsored by the Dexcom G six continuous glucose monitor, learn more and get started today@dexcom.com forward slash juice box. The Dexcom G six continuous glucose monitor is at the heart of how my daughter and I make decisions about her type one diabetes, and I think it would help you as well. Imagine being able to see not only the speed and direction but the number of a blood sugar 127 heading up. That's amazing. 127 heading up three points per minute. Even better information, you're seeing the number, the speed, and the direction. And if you want, you can share that information with up to 10 followers on Android or iPhone phones. So there's a share and follow feature as well. You probably should head over to dexcom.com Ford slash juice box to learn more. The data that the Dexcom G six provides is in valuable, irreplaceable and absolutely tingling tinggly Making you make the little tingle feelings when you think about it. I'm saying you get excited. You're like ooh, I can see which way the blood sugar is going. I know what to do now with food, with exercise with insulin. make an informed choice. dexcom.com forward slash juicebox

Gina 3:01
Hi, this is Gina from Kansas City.

Scott Benner 3:05
Gina from Kansas City. Excellent. Gina. We've met each other one day. Right? One time at the Kansas City JDRF extravaganza

Gina 3:16
that's right at the summit or whatever they call it here. Whatever they JDRF

Scott Benner 3:22
whatever they call it. Yeah, I don't think they're ever gonna call it anything ever again. But yeah, that one was a summit. What do you remember about that day?

Gina 3:35
Um, I was there volunteering for Nightscout representing the Nightscout organization. And we we have talked a few times before that. So I knew you were going to be there. And it was kind of, you know, fun to get to meet you in person.

Scott Benner 3:53
It's like a celebrities coming almost a little bit like, like, but, but like somebody in like a Mickey Mouse costume. Kind of where you're like, this is fun, but not that great.

Gina 4:08
No, it was a good day. It was fun. And it was interesting, too. I haven't done a lot with JDRF. And so it was fun to just kind of see the whole type of forum thing come together.

Scott Benner 4:22
Yes. I get a lot of hard boiled eggs that day. I will never explain why. That's all.

Gina 4:28
Yeah, I don't even want to hide. Yeah,

Scott Benner 4:30
I won't tell you why don't worry. I'm just I just wanted to bring it up. That's all. What I so what I remember about the day was that you and I have had obviously spoken previously. And I'm just getting to meet you and I thought it was really cool that you were there trying to just help with you know people to understand Nightscout I thought that was a really big deal. I want you to know that I still fundamentally don't understand it. That is not your fault at all. Right now Ardens Nightscout frequently locks me out and I have to put a password back in to get back in people tell me there's a way to fix that. But then it seems to involve coding and then I'm done. So,

Gina 5:09
right. I don't really Yeah. I don't want to misrepresent myself as someone who is the tech guru of any kind. And I had nothing to do with Nightscout being developed. I am just a and or looped, or any of the other. No, no, we're just they're parts of that community.

Scott Benner 5:28
You're spreading the word. Right?

Gina 5:30
Right. And I'm truly an end user who only follows instructions, like a cookbook recipe and you get me outside of that realm. And I'm, I'm lost pretty quickly, but I know who to ask. So that's always been my way to encourage people is to be like, well, I know who we can ask. So let's go ask.

Scott Benner 5:49
That's why I found it to be really nice, because you really, were just volunteering your time just trying to get the word out about something. That's really cool. Are you talking with your hands a lot? If you are, please stop, like touching it.

Gina 5:59
Okay. Yeah, I'm Italian, and we talk with our hands, so I'm gonna have to sit on them or something. Yeah.

Scott Benner 6:05
So far, I I'm pretty sure that I could identify seven of the things on the table in front of you just by how they say.

Gina 6:14
Awesome. Makes me feel so much more comfortable than I already.

Scott Benner 6:20
Are you nervous to do this?

Gina 6:22
Um, maybe yeah, I didn't. I didn't know that I was, but apparently I might be. And I'm just a fidget. By nature. So holding still is hard.

Scott Benner 6:33
Alright, well, you can move your hands as much as you want. Just trying to tap the table or anything that makes noise. Okay. All right. So if you're just flailing about wildly Fine with me if you don't hit the headphones or the table.

Gina 6:44
Okay, very good.

Scott Benner 6:46
So, but you have probably been indirectly mentioned in the podcast more than anyone else. Are you aware of that? It's never by name. You're always what? The person who made me try lube?

Gina 7:00
Yes, yes. You might have mentioned my name one time, right. I find it more fun

Scott Benner 7:06
to set you up as a superhero supervillain type situation.

Gina 7:11
I did double dog dare you. You did.

Scott Benner 7:13
And so at that point, did we know each other at all? We didn't.

Gina 7:18
I had been, I would send you a message every once in a while about because I had been listening to the podcasts all along as well. And so I would kind of just comment or whatever, nothing major. And then loop became available on Omni pod, I want to say was like, what has it been two years and the spring? And that is when I reached out and said, Hey, Scott, you ready to do this? Are you ready to get a little more sleep, I think is what I might have said,

Scott Benner 7:54
what made you ask me?

Gina 7:58
Because you? Well, a couple things. First of all, I wanted to always find a way to give back to this community, the DIY community, because they're so amazing. And so many people have spent so many hours of their own volunteer time breaking this thing down and then making it available to all of us. And I because I'm not tech oriented, I knew that I could never contribute in that way. So it had occurred to me that if I could get you to talk about it on the podcast, that way more people that I could ever reach with our little local community builds would be made aware of it. And so plus, it sounded like you were working on Arden stuff long enough that I could appreciate as a parent that you probably weren't getting as much sleep as you would like, just like the rest of us.

Scott Benner 8:49
Yeah, sleep is. Yeah, much more plentiful. With with an algorithm, sleep is much more plentiful. It really is. I was saying to somebody the other day that I don't think Well, that's the wrong phrasing. It would be hard to imagine a scenario overnight where the loop couldn't at least stop Arden by the time she was 50. And right, and that's, you know, right cousin. I'm not trying to say that happens every night. I'm trying to say if her blood sugar is trying to go down overnight, it's not some like crazy. Like, we used way too much insulin scenario or something like that. That, you know if she's drifting, even when Yes, even when it has trouble. She doesn't usually get below 50. Which I agree

Gina 9:29
yeah, which is if your settings are anywhere near where they should be. Yeah, it's gonna. It's gonna stop you, for sure.

Scott Benner 9:38
It's pretty cool. Yes, it's the part of the episode where I remind people that loop is a do it yourself algorithm that's not from any company has not been passed through the FDA in any way. It's just a robot of great people working on coding and this thing works really, really well. Somebody had to hack into On the pod to make it work, right? That was a yes. thing. And, and yeah, we do use it. And it's pretty amazing. Now, having said that, I do wonder how long it's going to be available? Do you ever think about that?

Gina 10:17
I do every day. Not every day. But yeah, regularly. I think that this community is, I don't even know the right word to use, but they, the people that are involved are and it's it's different people kind of all the time that are chiming in and adding their own piece to all this. They're so driven, that I don't know that any commercial, the commercial options as they do come available, will attract people for sure. Because they'll just be kind of simpler, you'll have that, you know, warranty type thing available. And that will call to a lot of the non tech people, but there are going to be those who are always just will, you know, needing to push the envelope. They want things the way they want them. And I'm not sure but, you know, the FDA approval process will move along anywhere near fast enough. So I'm hoping to cling to their coattails as long as I know. So if I really appreciate all the features, yeah. Oh, no,

Scott Benner 11:21
I was I'm sorry. I didn't mean to step on you. But it's interesting, the way you took the the the question, because I think the people are amazing. And the way it morphs and people come in and out of it. That's fantastic. I don't imagine that would ever stop. I just look at a company using Omni pod as an example. And I think How long do I expect them to make three different versions of their insulin pump? Right? Right. If one of them's going to go by the wayside? Isn't it going to be the oldest one? Like they're not going to stop making Dash? And they're not going to stop making Omnipod? Five, when it comes out? Right? But like, is it? I don't know the company. But is it reasonable for them to make three of these like, like, if I made a Nissan Altima, and you know, one of the ultimas had, I don't know, some partial self driving feature, and one of the Ultimates didn't, and one of the Ultimates had a third thing like how long before I was just like, whoa, you know, let's move people to the more advanced features, and making the i That's the thing that concerns me more than anything, it's like, are the the accessibility of the pump going to go away? At some point?

Gina 12:29
I do. I do agree that it could happen. And in that case, yeah, we'd have to make a decision. And our house, I do still hold. You know, we started back. Prior to Omni loop. We did the Medtronic, the old Medtronic pumps, and I have not sent my old pump off. For my son, he would really be unhappy to go back to a tube pump, I do believe but we would always have that option, I guess, as well. But yeah, I am hoping that it will all coincide nicely with a really nice upgrade to the Omnipod. What are they calling it horizon or five, five, that we can you know, one, one, and if they do, and we use all the pods that I've hoarded, that hoarded a little pile. There might be a small pile building up. And so we'll get through that. And then we'll go from there. Right. And by then he might be old enough to voice an opinion on things and tell me he's done with me managing him anyway. And then maybe some of those features wouldn't be as important. But being able to monitor him, we have some ability to do remote overrides, as you know. And he and just using the same phone, you know, he has, he carries one phone that he uses for everything and unlike or, you know, much like every other young preteen in America, he's, you know, he he has more buy in to use the phone that he has with him. Anyway.

Scott Benner 14:14
He's got it. Yeah, well, alright, I don't I obviously have no idea what's gonna happen. I'm just, it's just like, it doesn't make sense to me, just from a purely business scenario that they would keep making. Like it would be like if Dexcom still made the Dexcom four and the five and the six and then they're gonna make this like at some point, things, like they start making older stuff. And that's right. And then that's to me, where, where that where you'd have an issue and how many people? I mean, honestly, how many people really use loop?

Gina 14:45
Yeah, it's a fraction. It's a it's a tiny fraction compared to everything else. And I even think that there will be people that will be happy to, you know, move quickly into the commercial versions of things. as they become available, and so, we in our house will kind of take that case by case, I suppose and just sort of ride the wave as it goes, because, you know, that's a lot of unknown and we figure it out.

Scott Benner 15:15
We use the auto Bolus version of loop. It's like legit, you know, like rd rd took an LSAT this morning. And overnight, I think I don't know what happened like she was going to sleep. And her blood sugar got a little low we Bolus for a snack that she didn't finish. So she has some juice, then I think she popped up and everybody was asleep and no one noticed. So the loop like smashed it back down. It took a number of hours, but she went to 180. And it got her back to like 140 By the time she woke up at six o'clock. And then we started to work on bringing it down as she woke up, but it kind of wasn't budging. And so I didn't have a lot of time. As she was going out the door. I was like look, I don't like you got to go, this thing's a time situation. So I just set it override for like, I forget, like 150% for a couple of hours. And then two hours into the test. When the override ended, her blood sugar was still like more like 110 ish. And so I just jacked her Basal up remotely from my Nightscout. And so I basically did a 20 minute Basal increase. But it like I forget what I did like five units an hour. So she'd get like a couple of units and just 20 minutes. I basically said like, you know, I mean, like I set like a little extended Bolus through the Basal feature, like I pushed more and more and everything, like I did that remotely while she was taking her SAP. That's not going to exist with commercial stuff, at least in the beginning, if ever. And just the idea of being able to say, for whatever reason today more power. Like I know, you know what I mean? I know this amount. Yeah, it works. But right now, just whatever you do magic algorithm, do it. 50% more strong, please. Thank you. And you know, that stuff isn't going to exist. But I'm having said that. I'm really excited to get on the pod five and see what I can make it do. Right, right. That's what it will be. Yeah, that's my thought

Gina 17:18
for sure. And, you know, I say an algorithm. I'm a CGM, um whatever kind that you have, is better than no algorithm. And certainly, you know, CGM always greater than no CGM, in my humble opinion. But there's, you just got to have that data coming in. I, I know people do it the other way. And I am amazed by then and truly, you know, mad respect on it. But the idea that you'd give up, you wouldn't have 288 data points a day, you'd have 10 or 20, or something. I don't I don't even know what how that all works. It overwhelmed me to talk about it. We got on CGM pretty early Dexcom. Probably not even six weeks after diagnosis. So

Scott Benner 18:05
yeah, I think before before like to put it into perspective for people who've used the CGM for a long time or have only ever used it. The before there was the CGM, my whole life felt like the two hour warmup period on the G sex, right? Like you just sort of like, I'll set a timer, I'll test here, like it. And that was if you were trying to be like cautious with blood sugars and keep them in a range. Otherwise, most people just were like, Listen, I'm going to test I'll count my carbs are Bolus and three hours now test again, if I'm high, I'll give myself more insulin. And if I'm low, I'll eat something. And that was literally how people took care of themselves. And that was a person doing a really good job taking care of themselves. Before, right, you know what I mean? So this the technology's amazing. Now, the other thing I want to say is that, I also think this stuff will well, it has the opportunity to move more quickly now. But it's going to be up to the companies and whether or not they're willing to continue to put someone in charge of fine tuning. You know what I mean? Like there's not going to throw it out and go, Okay, well, that's our algorithm. We'll see in five years when we try another one. Like that's right. That's my hope. And I have to tell you that behind the scenes everywhere that I have the ability to say something I am very forceful is the wrong word. But I'm, I make sure to tell people that that's the key. Right? Like I always say in a meeting, I always go look, I don't know who Ivan is, but someone should hire him. Right. And I don't know Ivan is by the way, but someone should hire him.

Gina 19:47
I do agree and and that did happen with pee and who really, you know, developed the Reilly link and then Katie De Simone, they all went to work for tide pool and I'm hoping that okay, and I don't know I'm not the, I'm not the guru on this stuff for sure. But you know, with Tide Pool, which is a nonprofit, driving a lot of, you know, this kind of data collection and pushing the envelope on things and moving towards the interoperative operability of all the devices where they will standardize and be able to, you know, in theory, choose your own pump, choose your own CGM in the future and then choose your own algorithm in the future. I mean, they are headed that way. I'm, I can't, I don't, I can't speak to it enough to make it a given a real, you know, perspective on it. But I do know that that is all occurring. And the conversations with the FDA have somehow opened up more through that channel. And, and I'm hoping that that is where, you know, we're all going to find the sweet spot for how we do diabetes at our own, you know, houses because everybody does it differently. And so, to me, that's, that's the end goal. And that would keep things moving faster, forward faster.

Scott Benner 21:09
Yeah, I prefer a stainless steel pan to fry my eggs. And and some people like the ones that are coated with the nonstick stuff, we should get the Peck and I actually I have somebody coming on from tide pool, I think, on my schedule, you should see my schedule, it is just, it's insane. I don't have an open recording day until January.

Gina 21:35
Wow, Dr. should feel very amazed that I got on schedule after

Scott Benner 21:40
I had to double you up to make it work. And now I'm like, I have this like, high minded idea that I'm going to open up my, my schedule real quick and find the person's name. And now I realized that was stupid, like, I'm looking at all these names. Oh, my God. But yeah, I have somebody coming on. To talk about it at some point, I just think I know, you have to have like kind of a long view of this stuff, which sucks if you've got loop, because you know, the immediacy of a small group of dedicated people making a fix or a change. You know, like, they'll they'll I forget what what a good example is, but there was a problem was something and like four days later, they have it figured out and then they fix it and they upload it and it's done. You're just like, wow, that was cool. You know what I mean? Whereas when I write to a company, it's like, alright, we found a problem. We know, we had a meeting,

Gina 22:38
figured out what the problem was another meeting in a month, we'll,

Scott Benner 22:41
we'll get together again and see how this went. And then later, we'll probably test it. And if that works great, and then we'll make double extra double shore before we go to the FDA. And then six months after they get it there'll be like that fixes, okay. And then you know, that's just how the world works. So for people who are accustomed to lube, it's it's, you know, saying you have to have a long view of it is probably frustrating. But there's a bigger picture, right? And the bigger picture is, like no lie loopholes. Ardens a one C and the fives like no problem, I used to put a lot of work into making that happen. And now it's much less work, especially overnight during the day, still not so there's still stuff to do. But but the point is, is that it's very customizable. And I can in six seconds, say Oh, Arden's getting your period, turn this, this way, turn that that way, and make this target this and boom, we're right back at it again. It's like not a problem. Right? I am nervous to see how the other ones work. Because you got to think they're not going to be as customizable. Although, you know, what I always pitched when I'm talking to Omnipod. I always tell them about this is gonna sound strange for a minute, but Adobe Elements is okay. Is it just a, you know, it's a thing you can manipulate pictures with and stuff like that, right? And when you open it, there are tabs across the top, and I forget exactly what they say. But it's basically beginner, intermediate, and Pro. And right. And when you click on the tabs, you get more function. And I'm like, That's what an algorithm should have. And you can complete trainings online, and when you complete the training online, then it unlocks the next tab. Like you know what I mean, and then that way, yeah, he has an option to do it. I think that's an amazing idea. Nobody listens to me, but

Gina 24:38
Well, I do know and I know even less about the the Android APS system than I do about loop. And I've never attempted to use it all but I believe that in that space, the end there's a lot of European and the kind of international crowd that is more that uses that algorithm and that that technology base. And I really am speaking out of my zone here completely, but I believe that they have tests and quizzes and things along the way they make you sort of follow a path. And I'm probably underselling that or saying it all wrong, but I think that there is some of that, in that space. And, and I think that's great. Because you do have to use loop. Or, you know, these algorithms, you need to learn them, and which is why I was not content to sit and wait until someone came out with one.

Scott Benner 25:30
Yeah, if you're, listen, if you're listening, right now, if you're waiting for your doctor to tell you that, yeah, that's not gonna happen. So, you know, hey, Doctor, can you tell me, you know, I want to set my insulin sensitivity and my Basal rates, just so I want to, you know, I just want to be no lower than 70. If I can help, and the doctors gonna be like, 70. And then you know, that'll be the end of it. And you'll, you'll be wherever they put you. And if you're, if they get those settings wrong, then the algorithms not going to work at all. Like when the ID algorithm settings are wrong. It's just as bad as you doing it manually, not knowing how to Pre-Bolus and misunderstanding, food impacts. You just you'll rollercoaster on, if this totally, yeah. It's not magic.

Gina 26:16
Yeah. No. And you have to like we have a conversation with our Endo, and the, you know, nurse, the diabetes educator in our office, which rotates I ended up talking to kind of a different diabetes educator pretty often. And every time we have a debate over his ISF setting, because in in their calculations, it should be much lower, the number should be smaller than what we use. And it's because you know, when you're using a manual pump, or you're doing MBI, you're not factoring in how closely loop is recalculating, recalculating, every five minutes, and the duration of insulin. I think they said it much shorter with a pump, like three hours or something. And you know, we're at lupus six, right? Yeah. So yeah, they, there's a learning, there's learning for everybody all along the way. And as these systems do come online, I guess they'll be gathering their data as well.

Scott Benner 27:21
I'm just trying to say that it is 2021. And if you go into most endocrinologists office and ask them how to extend a Bolus for pizza, they're gonna be like, I don't know. Right? You're asking them to like learn an algorithm, Me thinks that's not going to go so well. And then we get into the situation where the pump companies are not doctors. And not only are they not doctors, they're not allowed to give you advice about how to use your insulin. Like they're just there. They're not the FDA does not let them say that. So you're going to get this tool again. And I always I used to say, it's like you give somebody a bazooka, and you teach them how to fly like SWAT flies with it, you know, the mean? Like, like, does a lot more than this? Oh, this is what I'm allowed to say it does. You know, and so it can't and that's nobody's fault. It's, it's again, that's the FDA and the company stay out of it. So then where do you get your training? Well, the company's point to the doctors, well, I just told you, your doctor doesn't understand that, you know, your blood sugar is high, because your Basal is low. So good luck. You know, like I say something on this podcast, it is so common sense to me, which is if your Basal is not strong enough, your blood sugars will be high more frequently, causing you to correct out of balance with where the carbs are, which will eventually lead you to a low, that isn't common sense thing that I would say in court, if somebody asked me to write, I'd raise my right hand, put me in three Bibles and say that that is true, except you show that graph to a doctor and they'll go, oh, look, you're getting low here, here. And here. We should turn your Basal down more or less Basal, right, because you're getting lower, I saw low, so less, instead of seeing, because there's not enough Basal, your bolusing in crazy places and making those later. And that's a really basic and easy concept. And I figured it out myself. And you met me, Gina, I'm in it. Okay, so I figured it out. You can't get your doctor to figure it out. But yet, we're gonna hand them an algorithm and ask him how to fine tune it. Not not not gonna go well. So then what's the answer? Because community can't be the answer either. Because you see what happens. It burns out. Like people try really hard and then there's these the great places and then people come in to get help they get their help. And they take from it, which is what they're supposed to do. But then most of them leave. And the people who are left behind are like, well, this isn't my job. I can't do this forever. You know, so that there has to be a mechanism in place. I hope tide pool does it. Yeah, where where you can just teach, teach, teach. You know what I mean? Yes, I don't know what the Yeah,

Gina 30:00
cuz what's out there is amazing loop and learn and the people that are putting all that together and all the time and effort that went into that goes into loops group CGM in the cloud. I'm sure I'm missing seeing, and I can't even get into all the names of everybody that's so amazing.

Scott Benner 30:19
million great people doing great stuff, but it's not their job. And so, you know, listen, if you want to know why the podcast is good, if you think it's good, it's because it's my job. And so I can, while you're walking around thinking about, like, your job, I'm thinking about other ways to tell people about glycemic load and index, it aren't as boring. And so that's just what I get to do. And so when you have this coming through a Facebook group, at some point, people are gonna get like, Wow, I can't do this anymore. They'll get burned out, you know? Yes, I'm not allowed to get burned out because I sold ads. And if you don't hear you burn out my voice, because this is my job. You know? Yes, that's gonna be really interesting. I am, I am super excited to put my hands on on the pod five again, because I think I might learn something about it. I'm also excited that Omnipod saw from the beginning to get involved with Tide Pool, which I think they were like the first ones, right? They were like, one day, we're gonna put out an algorithm. And if you want to use our algorithm, you can and if you want to use tide pools algorithm, you'll be able to do that too. Like that. Yeah, that was and that's still in the works. As far as I understand.

Gina 31:31
I meet you, again, I'm pretty far down on the totem pole of getting the information. But yes, I understand that to be true. And, and

Scott Benner 31:41
Geeta, no one. Just so you know, what's that? I said, No one tells me, I'm not on any totem pole. I'm not I'm not at all on a totem pole anywhere. I don't even think some of the loo people even like me, but I don't know what to do about that. You know what I mean? So it's just, it's, they probably hate you for telling me about loop, I probably wouldn't know about it, it wasn't for you. This is all your fault here. Finally, we know. Finally, we're getting some answers about who to blame.

Gina 32:16
I mean, it definitely has probably brought some people into the space that would not have wound up there. But I am okay with that. Because I just, I look around, and I read, you know, forums, I started into that, you know, I did a deep dive when Carter was first diagnosed and found all these groups and found all this information. And quickly gravitated, you know, in one direction, because there were so many people who just, you know, were very, very helpless in a lot of ways. And I was like, Oh, I, I need more information than this. I can't do this for the rest of his life, because he was not even seven when he was diagnosed. You know, I need a more sustainable path. And so quickly found the more proactive groups and just kind of plunked my chips up over there.

Scott Benner 33:09
Where do you think you'd be personally if, like the algorithm never existed.

Gina 33:16
I mean, I don't even want to know. You know, because it used to get him in that that we didn't wait very long he was diagnosed, we got CGM, which really shows you, you know, whether you're on it or not on it, it shows you where you are. And so then did traditional pumping and found those places found us in those, you know, the highs, the lows, etc. And just the stress of that, it was a lot I took it on very personally. And, you know, watching those Highs climb at night, and the things that used to happen back in the beginning, it was psychologically not a good place for me to be. So I don't know how people do it. And that's why I wanted to be able to encourage people to not wait until a system comes out. You know, the whole, the whole hashtag, we're not waiting, appealed to me on so many levels. Like I've got to be doing something more. We this will not you know, this will not sustain. So I found I found the podcast. In addition to you know, I found the podcast and started listening that before we were looping it this was all sort of going at the same time. So I was not content to wait until you know, the next thing. And look, it's been full Carter's been diagnosed for years. We've been looping over three of those years. And we're still waiting on, you know, some of the algorithms to come to come Yeah, it takes a mark that got

Scott Benner 34:51
you got this far off of this and well, don't you? I shouldn't say Don't you think but I think that you said earlier you know, what do people do? I don't know what people do. I think what they Do as they give up, or it just becomes too overwhelming. I just got done interviewing someone whose kid was diagnosed when they were two, and by the time they were three, they, they were getting divorced. And then they lost a couple years in there. And you know, they won't see one up 789, you know, and it's like, you kind of don't even notice that happening. It just, it gets away from you, there's a lot going diabetes a full time job. And then you know, your mom in charge of it for a little kid. And then I think she had another kid, and then you know, she's got life issues, and all this is going on, something's got to give somewhere. And you know, like, what can give to that? You know, is it is it easier for your blood sugar to be 160 all day, or me not to have a job? Well, I have to have a job, we won't have insulin like so. Okay, so you don't I mean, you start making those bargains. And I think, I think that's what happens for most people, these algorithms, you know, so we're sitting around right now talking about this thing, that, you know, you have all this control over, and you get this fine control. And it's amazing, and it should definitely exist for everybody, you know, but then you start asking yourself, Could everybody really use it? And this is where Yeah, I know, good, good. I'm sorry.

Gina 36:18
Well, can they use it? And and I think that people can learn that, but then also, you know, if does it fit into their economic lifestyle? Right, um, you know, how do they afford it? Those kinds of things all come into play as well. But also, yes. How do you teach this? I mean, I come from a healthcare background. And so that helps me, I guess, maybe feel more competent, about tinkering and trying things. And, you know, I knew what a pancreas was some

Scott Benner 36:52
idea of what's going on? Well, so. So I mean, I'm gonna say on the pod five, you know, because that's what I'm going to be like using. But you take that, right, just try to imagine, I don't know how many users loop has, right, like actual users? I would, I would venture to guess that nobody knows. They know how many apps have been downloaded maybe or something like that. But I don't know, they know how many people are actually using it. But is it fair to say it's fewer than 10,000?

Gina 37:22
I'm gonna guess probably the last time I looked at, yeah, how many times the code had been downloaded and GitHub? Yeah, it was somewhere around there. But you're right. There's no real way to know. Right.

Scott Benner 37:37
And so it let's just forget first, let's say it, everyone who downloaded it is using it right. Right. Now let's Google worldwide. Type one. diabetes.

Gina 37:50
It's a fraction one

Scott Benner 37:51
e 21. Yeah. So a lot of people have diabetes? Yes, a lot. A lot. A lot of people I think they say like, it's like 460 million people have diabetes. In general, type one. diabetes, of course, is a fraction of that. And now, but what if I think the last number I heard was like 1.8 million, maybe? Right for type one, and you're telling me 10,000 of them have like the loop app on their phone? And so percentage wise, that's nobody, right? Like if I said to you, if I said to you, Gina, listen, here's what we're gonna do. We're gonna start a television show. And now there's 1.8 million people who have TVs. We need a big piece of those. Who are we're going to go out of business. And then you said to me, oh, but Scott, we have 10,000 I go, Oh, dammit, Gina, we have, we have to cancel a TV show. So it's just not a large amount of people. Now those other 1.8 million, by the way, pump use is not that widespread, far fewer people pump than you would think of that number.

Gina 39:01
Exactly. Especially when you get to international because so many of them are not. I mean, some countries this stuff just doesn't even exist. They just don't have access to it at all.

Scott Benner 39:11
I just sent a note from a listener in Romania, and they asked me to send it to Dexcom and Omnipod asking them to bring their stuff to Romania. And so like that, so but but Okay, now we're down to the people. A lot of people don't pump. Now you're down to like cost, right? So CGM are expensive, more expensive than not having a CGM pumps might cost more money or maybe your I don't know, maybe your insurance that covered this. And now we're down to the people who can afford it, who are insured who are inclined. And those people still have wack as a one sees and don't know what they're doing, right. Right now you're slapping on the pod five on them. And if you tell me that that takes their a one seat down into a stable place, that's magic. That's a magic rose people Yeah.

Gina 40:00
What did I read? Get it someone had put a statistic online just recently. And I do, I'm in a couple groups, so I kind of dive in and out of occasionally. And I think that, you know, the pediatric endocrinologist want kids under like, 7.5. That's their goal. And that only like 17% of kids are meeting the goal of being under 7.5. Yes. 17%.

Scott Benner 40:29
And I don't know, it's yeah, do you know, I don't know the Omni pod five numbers yet. But, I mean, I got to think the goal a one sees under 7.5, at least. And so right, if you're telling me that you could just slap this thing on those people, and they'd have that kind of improvement? Well, then hell, then you've said the greatest thing that's ever been said around type one diabetes management. Except true, except for you. And me and his other handful of 1000s of people who have seen Looper like, huh, hold on a second. I like to be able to turn Arden's Basal up while she's taking your essay to, you know, that it seems like somebody's taking something from you.

Gina 41:10
That's true. Yeah, we are a subset. And I'm not even in I mean, the subsets kind of vary, and there are people who are even more dialed in than I am, I like to use loop as like, my, not my autopilot. But as my cruise control a lot of the time, and I don't, I don't have our my son, I should say, doesn't always have a pristine line, and all these things, but it keeps us in the zone that keeps us in the lower, you know, the lower sixes, a one see, and and that allows me to, like, you know, take my eyes off the road. Occasionally,

Scott Benner 41:49
like when you hear him talking about warping and nudging, like people who don't have algorithms, that's what that does really, that bumping and nudging, right keeps you in a space that's manageable, where you're not so far out of whack that you're suddenly like, I don't know, how much insulin do you think will break up? 350? You know, like, you don't get that situation, you don't get into situations where you're like, I've been eating for an hour and a half and the 60 won't move like that doesn't really happen with the algorithm. Right? That's not to say that it couldn't, but in general, well set up, etc, etc. You don't see that as much as you would without it. But right, so I'm super excited. Like, I hope on the pod five works great for Arden for a number of reasons, a algorithm printed right on the circuit board, no need for any kind of a link thing. Yes. You know, like those things comes from the company. If it breaks, I know who to call, you know what I mean? Like, if when when loop goes bad, what I do yell at the Internet, you know, so.

Gina 42:46
Right, right? I don't know. Yeah, for the general population, I mean, it is going to be and I expect even people like I said, to move off of loop DIY loop into whatever, for sure. Because it is it's just less to carry around, it's going to be and compared to maybe what they had done in the past. You know, there I we saw people do that with even tandem, and kind of people pretty, you know, pretty deeply into the group went ahead and moved off into control IQ. And and they're happy, and it's working. And I totally applaud that whole. That whole effort. And yeah, like what you got to do what works for you, for sure. I agree.

Scott Benner 43:27
And also, yeah, enough for nothing. And I know there are people who wouldn't be bothered by this at all, but I'm not really comfortable having to send my daughter to college with a firm understanding of Xcode. So that she can build an app and load it on her phone. That's right, that's not, that's not in our life that's not conducive to harmony that makes it sound like I'm gonna have to get on a plane one day, fly to a school and do something. And when I get there, I'm still gonna have to call you to figure out how to do it, you know what I mean? And so I've just, I that level of complexity, and intricacy I'm not comfortable with, you know, the programming and the making the app and all that stuff like Arden needs a new phone so badly. And I guarantee you that the only reason we haven't done it is because I don't want to rebuild and I pretty sure I would just open Xcode, plug the phone in and like install it. I don't even think it would be hard. And I It scares me to think about doing it.

Gina 44:32
Yeah, we just recently Carter, Carter exploded phone. I don't even know what he did to the phone. He's He's 10 and a half and he's outside and running constantly and live water and all those things. I

Scott Benner 44:45
mean, my God, you're almost, you know, they mean might as well be 1812 Are you are you I don't even know it's such a nice place to be in there. But yes, thank you.

Gina 44:56
Thank you. Thank you. We need it. We need a plug there. In the middle of The map for sure, but we have large bodies of water and he not not an ocean, we're nowhere near an ocean. But he definitely manages to get all of this tech wet frequently, which has ruined a lot of things. And I'm just this past week, I had to build on a new phone like the send off, get a refurbished replacement. And, yeah, it caused a little sweat around the back of my neck. There's no doubt about it. It was like, Oh, God,

Scott Benner 45:24
I went away. I went away for a week, a couple weeks ago. And Kelly goes, she pulls me aside, she says, hey, if this thing stops working, what do I do? And I said, rip the pot off, pull her PDM out, put the batteries back in it, yeah, only I'll give you a Basal program to plug into it, you can go back to the way I used to do it. Because I write for I wouldn't know the first thing to tell her about how to handle it. And

Gina 45:47
it's true. And you have to have a backup plan, no matter where you are, you know, whatever way you're managing your diabetes, you've got to have a plan that includes putting insulin into a body somehow. So you know, I so I was away from Carter when the phone died. And I was like, okay, and I could start getting phone calls about it. And I'm like, okay, hold on, guys, don't panic, you've got this going on, we've got this is the backup, we've got this here, you know, because it is a complicated thing to kind of maintain. But we also have the backup plan, there's, you know, there's a long acting pen available there are you know, there's a vial of insulin, there are needles around. If we had to go back to old school, and finger sticks, we can do that. And we can do it rather quickly. And I think you always have to, you know, that has always be in your backup pocket in your back pocket. But the idea that you know, yeah, and we have a PDM that we literally have never used it's never even had batteries in it. But I keep track of or, you know, our settings are I have those kind of, well, they're really distorted Nightscout, where you can go back in and look at, you know, previous profiles. So you can so you can too, so I can't, I can't. But yeah, I don't care if it's even just scribbled on a piece of paper in your back pocket. You know, those things. Everybody has to have that no matter what you're doing. Yeah, you gotta have that backup plan. And it's not something that takes you six months of you know, all this, you know, like, oh, you should do this before you start pumping. Or you should do this before you have CGM. So you get a feel for it. You know, I'm not for bad either. I think that you teach people to use what they're going to use most common. And you make them aware of the fact that you know, in the event of an emergency, this is what you do. It's like getting on an airplane. Right? They they show you where the life.

Scott Benner 47:51
I'm not a fan of planning for failure. So, right, yeah, I'm gonna plan for success. And if something goes wrong, I'll adjust but I'm not gonna sit around understanding. You know, I don't know. Like, I just thought, right. I don't care. I wouldn't care if Arden was diagnosed today. I'd want her to have an algorithm today. And that old why that old ass argument about like, well, you need to understand how I don't even care. I would I don't think that's true. And I don't care. And if, if the world blew up, and there was no technology, and we had to go to a short, you know, a short and a long acting insulin and inject everything, I'd figure it out. But I don't need a year figuring it out just to give it away. Hope you know what I mean? Like it doesn't. I don't buy into that stuff. Like you need diabetes without a CGM. You try understanding diabetes without a CGM, that CGM is the only way to understand it, you know. So

Gina 48:45
I do think it is, you know, one of the many ways and then that's what I try to tell new families is because of course, anyone that knows someone whose child gets diagnosed, that I know, you know, they owe you got to talk to, you know, Gina, and so I tried to just and it's also overwhelming for them in the beginning. But I tried to just get that information in there, like, find your online community. And you know, podcasts of course, Juicebox Podcast, I don't start with, you know, going in hard on the rest of it. But if they can get to a CGM in the beginning Dexcom especially, then they're going to get that information right away, and it's going to help them fast forward through the learning curve, as opposed to the spot checking. That just leaves you feeling lost, confused, and lost.

Scott Benner 49:33
This is really come Gina, right. And the electricity grid goes down or I don't know. Russia hacks our grid or I don't know what's gonna happen. Let's be honest, it's harsh to say Arden's the first. Get any mean she's gone. Like Amy she knows that I know. We all know that this minute refrigeration is gone. We're on a countdown, right? We're on Yeah. So so I won't spend the last days of my life thinking I really do. I wish I understood MDI better than I do. Now, because we're running from zombies. It doesn't matter. It just is. So this is the world we live in. I'm planning for this world, like you don't mean like, I really would like to get an electric car one day, I don't, I wouldn't buy it and think to myself, Well, I hope electricity doesn't go away. Well, if it does, we have bigger problems than that I write electric car. The problem, we're all gonna murder each other in the street inside of a week and a half. Okay, that's the bigger problem. I mean, no one listening to this hasn't thought. If everything got sideways, how quickly could I get to the CVS break in and Robert and take all the insulin, we've all wondered how quickly we could get that accomplished. So great. So whatever your pharmacy is called, don't don't. Don't send me a note telling me about your Walgreens or whatever, just I don't care. We all had that. But that's not the plan for you don't plan for that. If you're planning for I think you're a prepper. And then I think you've got food and bones. And that's, that's got a lot of carbs. So you're in trouble one way or the other?

Gina 51:12
I don't exactly know, but I just I want people to know, that's right. You'd like you, you have to live today. And today, these things are available, and they're amazing. And you will be not waiting part like well, this will eventually be available. Like, you know, waiting five years for the Cure kind of thing. Like the curious not coming. I'm gonna assume right now, you know, until I have something in my hands, like, I am gonna use what's available right now. Yeah. And that, you know, that included loops. So

Scott Benner 51:43
you got to think is a little weird. But in comparison to progress, our lives are pretty short. So right, you can't give away a 10th of your life to waiting for something. Like, you know what I mean? Like, you're a great example, you figured out how to use loops, you've got all these years under Carter's belt of this, you know, you know good control and, and, and health and, you know, a confidence and an idea that it can be done like all that exists that whatever, you know, anxiety and stress, it's lifted off your life sleep, freakin sleep alone. It's amazing. Right? Yeah. And then something else is going to happen on the pod file to come out. And then if they don't, you know, and then and tandems, oh geez, alright, well, we'll get better at two and then Medtronic. Like, I'm tired of that guy on the podcast and our stuff is crap. And then they'll fix their thing. And then like, you know, and everybody's gonna keep pushing. And, and you're gonna get somewhere in a handful of years, you cannot imagine right now. And if you think that's, if you think that's BS, you have to really I'm going to tell you right now, my daughter's had diabetes. Since she was two she's about to turn 17. My rough math tells me that's 15 years. So 15 years ago, I had a meter that looked like it fell out of a bubblegum machine, a handful of needles and a vial of insulin. And now and a cell phone. What a cell phone was a thing that was in a bag on a cord that plugged into your cigarette lighter in your car, and your car doesn't have a cigarette lighter anymore. Okay. Now on my daughter's cell phone, which by the way, is a pocket computer more powerful than the first computer that launched us to the moon in the 60s. Okay, there's a an app with an algorithm in it. That is looking at our blood sugar going. Point three, five an hour point, one an hour, one an hour. 1.2 point 8.71. Take it all away, give it back. Oh, Bolus point five. It's doing that it's magic. Okay, like it's a man. It's amazing. And, and I don't know that I could have imagined that maybe even six, seven years ago. I don't think I could have imagined that. So what's gonna happen when she's 25? You know what I mean? Right? It's common.

Gina 54:02
Yeah, I'm, I'm counting on that, that the technology is going to continue to, it seems like all technology like, you know, we're speeding forward. It's all you know, what happened in the last 50 years? We've eclipsed in whatever five years or something and then so I'm counting on that occurring in the diabetes space as well.

Scott Benner 54:24
Let me do some reading. Give me a second here. Um, I know people from AMI pilots that my podcast and they damn well should I saw a lot that's not the point. All right, listen. Find the Ivan's find the I hire the Ivan's get the people I that should be a hashtag find the Ivan's I don't even know. You know, he's probably a gun runner in his spare time and I'm like hey hire I don't know him. Okay. Well, what you imagined if he was just a gun running type one who wanted to go down. She's right now like, like going across the desert hoping not to get caught. Hot by the IMF, which I think isn't a real thing. But that's the thing. Tom Cruise works for mission and but not the point. The point is, find people like that. And you hire them and show them your algorithm and say to them, Hey, make this better. And then when you're done making it better, take a vacation, and then come back and make it better again, like keep doing the right for us. You should be hiring those people. That's all.

Gina 55:24
CO signing on this 100% Thank

Scott Benner 55:26
you. I don't know who he is yet. Maybe it's somebody else. But hire those people. Put yourself in a position where you can stand up in front of people diabetes, hold up your your pump and say, this thing is going to hold your agency in the fives. Like if you could say that to people, that would be magical. Like do that, you know, anyway, try for that. That's all I have. I can't I can't be common sense for everybody. Jean. It's tiring. Okay. You just heard my brain. I took a nice man who's helped with Lupe, who I've never met before in my life. I turned him into an international spy I put him in the desert. Tom Cruise that all happened in 20 seconds. My brain is not built for like building algorithms, but it is built for saying stupid crap, and that I'm really good at that. So

Gina 56:11
right? I won't even say his name because I'm pretty sure it's probably pronounced with all different accents. And it could be Yvonne I

Scott Benner 56:20
mispronounce to him. Are you telling me I'm missing? I could be mispronouncing IV A N.

Gina 56:28
I think maybe you could be. I mean, this is incredible. No, no, that's the guy from Philly. mispronouncing an international name. Yeah, I don't know.

Scott Benner 56:39
I have I have Russian listeners. I'm assuming that's where this guy's from. That's got to be right, doesn't it?

Gina 56:47
Ask them Don't ask me. I'm gonna midwest.

Scott Benner 56:50
I heard that's where he was from. I mean, I can be applied to I Ivan's hyphens a woman named Yvonne who lives in Sarasota. I bet she's right. I just been wrong about all this.

Gina 57:03
Someone's gonna let you know. I hope so. I

Scott Benner 57:05
you know, for sure. Ivan Reitman made Ghostbusters. And he says his name Ivan. So I was thinking. I don't know. It doesn't matter. It's a it's a random name that I've literally heard out loud. Like, and I only know it because Kenny said to me one day, do you want to use Pete's auto Bolus, or Ivan's auto Bolus? And I was like, Alright, I don't know. Let's try it. I just pointed to the one that was closest to my finger. I didn't know what I was doing. It and but seriously, there are people out there. It's crazy that they don't work for the companies who are making it's insane. Right, you know? So yes, go find them. That's all I got. I know it's been an hour. But why are you on the podcast that I make you come on? Or did you want to come on? I can't remember.

Gina 57:53
We just sort of on one of our text threads. It was like, you're coming up on, I believe two years. blooping. But I think I said it's been two years since I double dog dared you to try this. And you said maybe you should come on. And I was like, yeah, it seems like it might be time. So

Scott Benner 58:12
let me let me thank you. So first of all, I would have not done it without you saying it like you specifically. So keep that in mind. This is all free. Things were going so well for Arden back then using the stuff that people hear in the Pro Tip series all the time that I never would have even thought like like where's better in this Ardens? A one season the fives it's stable. Like mid fives. Sometimes it's lower fives sometimes it's five, seven, but it's it's here. She eats whatever she wants. What what could be better than this? Well, the answer to what could be better than this is sleeping. Sleeping could have been better. I'm sleeping is really cool. And I missed sleeping and I don't listen anymore. You may have saved my life. And I don't know that it happened. Now on top of that, when you said it, I will be 100% Honest, what I thought was everything's gonna go algorithms next couple of years. It would be smart for me as the person running the podcast if I understood this stuff before it happened. Like I just thought it would be a bad idea. One day One people were like, here's an algorithm. I was like, what's that? Like? So I thought that was my closest ability to to learn about it. And it's become a staple in our lives. And it helps people on the podcast all the time. I get great feedback about the loop episodes that we've done, that really help people get their loops currently. And I've learned more about diabetes because of loop. I learned more about diabetes because of a lot of things that happen on the podcast. But just having Nightscout open and watching it manipulate Ardens Basal took my understanding of diabetes to a completely different level. So just

Gina 1:00:01
It just shows you the you see it, it's happening in real time in front of your eyes, instead of you trying to piece all this back together on the high on the back end, and be like, Oh, maybe that caused this or maybe that caught, you know, so I think even if you had to switch back to, you know, MDI and finger sticks, I still, I think people would be wiser because they had seen it would have seen the data in the past, and so they could make better judgments.

Scott Benner 1:00:31
100%. That's true, I 100% believe, Yeah, true. The idea that at 11am, the algorithm has a pretty good idea that you're going to be low in an hour. And it starts taking Basal away, but not just like, it doesn't just rip it away. It takes it away thoughtfully, so that you drift down, you don't like crash and catch, like, it's it's so gentle. Like how it works. Like when I look at artists, three hour Dexcom lines, they're always gentle, even if she gets a spike, they're gentle spikes. Even if she's low, it's a gentle low Arden's blood sugar does not hop straight up or hop straight down. And, but again, like there's more to it than just seeing like saying to somebody, like, Oh, I saw the data, so it makes more sense. And I know that when people are like data, but data data, please leave me alone. And so, but but, but just watching it happen, makes you feel like 100%, right, you put me back on just the pump. And the bumping and nudging I used to do I would I would instantly be better at it now. And one of the things that's taught me is like, we talked about crush it and catch it, like, you know, if a blood sugar gets really high, like you want to start over again, I can, I can look at the line on the Dexcom during a fall, like if I create a fall on purpose. And I know I'm gonna have to catch it with glucose, I can see on the line, it's not the number and it's not the arrow, it's the actual pitch of the line. I am like, ooh, put in the glucose right here, or put the loop back on. Like, sometimes I'll shut the loop off. And then I'm like right now right now, it's when we turn the loop back on, and it just boom catches it. Or sometimes you turn the loop off, meaning you now have Basal insulin covered in the loop has no ability to take it away or give it back and you're in a freefall. And if you don't know if it's ever happened to you in a freefall, turn the loop back on the loop shuts off the Basal, and the freefall stops in minutes. It's amazing. 100% amazing. It means that that the impact of the insulin, when it's being used in an incredibly thoughtful way, every minute of the day, it is more reactive than we think it is. Does that mean Exactly?

Gina 1:02:52
Yeah. Yeah. Because conventional teaching is that you make Basal adjustments for what you want to see three hours from now. Some thing like that, I've never paid any attention to it, because of course, we were doing this so quickly. But they you'll hear people say that like well, you can't use Basal as brakes. And I'm like, well, Luke can work very effectively that

Scott Benner 1:03:16
way. So now a regular person who's not using this algorithm right there, right. I think what what gets missed, I think what I'm learning is what gets missed is that most people even who are having success are largely having success through mistakes, they don't realize their mistakes. They're like, like their Basal is like, way too heavy, but they barely Bolus anything for a meal, or their Basal is way too light. But they their meal ratio is way heavier than it actually should be like there's a middle ground in there where they're Basal should be in their meal ratios should be but one's heavier ones lighter. They're making mistakes and making up for them somewhere else. But you don't realize that in another scenario, like the one I just described, you're too heavy Basal insulin has, has impacts across the timeline of your day. But if you but if Arden's Basal insulin said at one unit an hour, but for two hours, it was point eight for a half an hour, it was point four for another hour, it was 1.2. Like, then the insulin, it's the pinnacle of timing and amount, it's the right amount of insulin at the right time, 24 hours a day. And that takes a lot of the a lot of the variables around insulin. So yeah, everybody should have it if they can afford it, and they can figure it out. And yet I know that's not going to happen. So hopefully these commercial ones are going to spread like wildfire and help people that's my hope, at least I agree. And then I'm gonna learn how to use it and then we'll do episodes about that. And that's right, I gotta keep this podcast going.

Gina 1:04:49
I think I think you have an unending amount of information. And it's it's helped us so much even with looping. There's still so many things that You still need to think about, especially with growing kids, puberty, all that stuff that we're starting to look at, and it does some crazy stuff to numbers. Yeah. And it's just amazing how quickly he can need more insulin suddenly. And I don't think I would know those kinds of things. As quickly as I know, as I've learned them without having been, you know, a podcast listener all this time. It's so applicable no matter what you're doing, however, you're delivering your insulin that I, I just recommend it to everyone, I think.

Scott Benner 1:05:37
Thank you. Just amazing. I wanted to say that seriously. And then I just giggled over myself out of like, I don't know what

Gina 1:05:47
like, but that's exactly what I say when I checked all these moms that are new onset. I'm like, it will help you fast forward through the learning curve. Yeah. Oh, it really does. So listen.

Scott Benner 1:05:58
And you know, some people still can't I, the other day, I had it in my head. I was like, oh, I want to, I want to interview somebody who loves the Facebook page for the podcast. But it's never heard the podcast. And so I put up you know, I put up a post like that was like, Hey, if you love this, this group that you're in right now, by the way, it's called Juicebox Podcast, type one diabetes on Facebook. No, go join it. It's a really great Facebook page for diabetes. If you love this page, and you've never heard the podcast, I'd like to have you on the show. And way too many people answered me. I was like, I've ever heard the podcast, people are like, what podcast? Like, are you? Okay? But, but what I heard back most frequently from people was, I want to listen, I don't have the time. And the way I answered them, or I would answer anybody that says that to me, would be Look, listen to the defining diabetes episodes, there may be four or five minutes long each, there's 40 of them, there's a couple hours, and then go listen to the pro tips. There's maybe 20 hours of those. Now, okay, that might be 20 or 30 hours of your life. But what you'll get back after that is way more in time and, and confidence and, you know, alleviating fear, like what I want to say to them is, I know you think you don't have enough time to listen, what I'm telling you is you don't have enough time not to listen. Exactly. And that's a hard thing to make people understand, I think.

Gina 1:07:33
But I agree. But they Yeah, it just it really has truly helped us even just from the psychological standpoint, the sense of hearing someone else, you know, share their story, the emotional impact that had on me early on, the psychological impact of not of not feeling alone, not feeling ashamed that I'm doing it wrong. It has helped me just come at this from a much more non judgmental standpoint of like, okay, he is high right now, he needs more insulin. And that be like, What did I do wrong? What did he eat? Did you sneak food? I don't even want to be in that headspace. And the podcast has definitely helped us all that to hearing just the stories are different. But there, there's that thread that just runs through so many of them. And you you're instantly human without ever having met anyone. feel that sense of community. And it's super important.

Scott Benner 1:08:32
I agree. And I am. I'm touched that it. It strikes you that way. I think that's really wonderful. I will 100% admit that the podcast does more than I anticipated. It was not my some of this stuff is not on purpose. But I after I've seen it, I've definitely leaned into it. You know, I've definitely been able to see like, wow, this is something I didn't realize people needed to know. But it's super important. Like the define, I think, when people ask me like, what the best part of the podcast is like, if you're newly diagnosed, it's defining diabetes. Like you need to listen to those because it's all the words and the ideas that people are throwing around, you're like, I do not know what any of this means. So you can't effectively use a screwdriver if you don't know what a screwdriver is. So let somebody explain to you what it is. And then you know, Jenny and I'll have a fun couple of minutes where we'll show you where it would fit into your life. And then you think okay, now that's a tool I understand. Now. Once you have that, I think the pro tips are next to get like a deep dive into like management. But those defining episodes are really to me. I'm very, very proud of them. As a matter of fact, I'm working very hard right now on doing something else with them that I think will help people. Oh, I'm not gonna say on here, because well, Gina, some people listen to this podcast to steal my ideas. And so this is not going to be one of them there. You're not taking this idea from me you scumbags come up with your own idea. When talking directly, you know who you are. Eat it. Okay, that's it. Um, but But yeah, but I'll tell you when we're done recording, but I'm doing something with that, because I think there's I think there's so valuable.

Gina 1:10:17
Definitely, yeah. So no matter themes are they'll never have your delivery. So

Scott Benner 1:10:24
that to you can't steal me. Is that what you're saying? That's what I'm saying the glue that holds this bullshit together. That's 100%, right? No, I, well, listen, let me be 100% honest, I've never heard any of those people. And so I couldn't tell you if they're good at it or not. And so that that I want to be completely fair to them. They might be amazing at it. But there are it's not. It's not everybody. But there are people who wait for me to say something and then run out and try to do it before I get it done. So I've learned not to say things ahead of time. That's all. Yeah, that's all. Is there anything that we haven't talked about that you wished we would have talked about?

Gina 1:11:06
Um, no, I think I just encourage people to, you can encourage them to be bold with insulin, I just want them to be bold with trying new things and not waiting. We are not waiting. And that that can mean a lot of things to a lot of people. But just keep, keep trying something new, because that's what helped us the most.

Scott Benner 1:11:32
Because you do not want to look up 10 years from now and think, Oh, I didn't realize everyone was doing it like this. And I'm like this, like you don't change for the sake of changing. But when something makes sense. You should take a look at it. And algorithms makes sense. So that's pretty much it. I mean, if you've got a CGM already, like if you're on Omni pod dash and Dexcom right now, I mean, to me, it's a no brainer to try on the pod five when it's available. Agreed. All right. Well, hold on a second. I'll tell you my idea when no one's listening. Alright. Alright, nosy people, I

Gina 1:12:09
like to be in the know. Oh, who doesn't?

Scott Benner 1:12:12
Ready. I'll just start telling you right now what I'm gonna do with the define. I just restarted the recording because I forgot to ask you something. Alright, so you're, again, I've told you know what I'm gonna do with the show. And now we're back. When I was in Kansas City, yes, I It was a busy day for me. I was in and out of a lot of places. And then I went back to the hotel and the lovely people that had me out. told me they wanted to take me out for barbecue. And they took me to a place where I've told the story on the podcast before I thought I was going to die. It was like in an alley. It felt like next to a train track and everything smelled like cow manure. But the barbecue was amazing. Where was I?

Gina 1:13:01
Do you so? If you were all the way downtown Did you drive

Scott Benner 1:13:06
quite a ways? Not too far. We weren't.

Gina 1:13:09
We weren't around the county. I'm Joe's barbecue.

Scott Benner 1:13:14
It was like it was in like a square stucco nondescript building with a ramp on the side of it that easily could have been a warehouse

Gina 1:13:23
man. We have a lot of good barbecue here. Arthur Bryant Jr. Joe's barbecue, which used to be Oklahoma Joe's. Gates, of course. I mean, there's just dozens.

Scott Benner 1:13:38
So if I hold on if I say gates barbecue. Yeah, see that's not at that building looks new on a second. What Joe's? Well, they're

Gina 1:13:48
the original Joses literally in a gas station. And people wrap around the building every day to get back but they have a place out in the county as well. That's a little bit more of a restaurant. You were out in the suburbs, and I live in the city. I don't know.

Scott Benner 1:14:05
Quite as well out there your time. I apologize. I thought I thought it was gonna finally get my answer. But instead

Gina 1:14:10
now. I'm sorry. You can just cut this part out.

Scott Benner 1:14:15
Listen, I don't like to edit that much to a lot of trouble. I will keep track. Oh my god. There goes my voice. This is what happens when I try to do two podcasts in one day.

Gina 1:14:27
Oh my gosh, my voice just

Scott Benner 1:14:28
completely disappeared. Alright, I'm sorry. Hold on.

I want to thank Gina for coming on and talking to me today. And I'd also like to thank the Dexcom G six continuous glucose monitor for sponsoring this episode of The Juicebox Podcast. Head over now to dexcom.com forward slash juicebox. There are links in the show notes of your podcast player and links at juicebox podcast.com. If you can't remember dexcom.com Last juicebox I want to thank everybody for listening for following and your podcast apps for subscribing for telling other people about the show, leaving wonderful reviews, checking out the private facebook page. See me over there on the Instagram, all the stuff you do. Thank you so much. I'll be back soon with another episode of The Juicebox Podcast.

#600 'Twas the Night Before Christmas

Scott‘s rendition 2021

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'Twas the night before Christmas, when all thro' the house, Not a creature was stirring, not even a mouse; The stockings were hung by the chimney with care, In hopes that St. Nicholas soon would be there; The children were nestled all snug in their beds, While visions of sugar plums danc'd in their heads, And Mama in her 'kerchief, and I in my cap, Had just settled our brains for a long winter's nap- When out on the lawn there arose such a clatter, I sprang from the bed to see what was the matter. Away to the window I flew like a flash, Tore open the shutters, and threw up the sash. The moon on the breast of the new fallen snow, Gave the lustre of mid-day to objects below; When, what to my wondering eyes should appear, But a minature sleigh, and eight tiny rein-deer, With a little old driver, so lively and quick, I knew in a moment it must be St. Nick. More rapid than eagles his coursers they came, And he whistled, and shouted, and call'd them by name: "Now! Dasher, now! Dancer, now! Prancer, and Vixen, "On! Comet, on! Cupid, on! Dunder and Blixem; "To the top of the porch! to the top of the wall! "Now dash away! dash away! dash away all!" As dry leaves before the wild hurricane fly, When they meet with an obstacle, mount to the sky; So up to the house-top the coursers they flew, With the sleigh full of Toys - and St. Nicholas too: And then in a twinkling, I heard on the roof The prancing and pawing of each little hoof. As I drew in my head, and was turning around, Down the chimney St. Nicholas came with a bound: He was dress'd all in fur, from his head to his foot, And his clothes were all tarnish'd with ashes and soot; A bundle of toys was flung on his back, And he look'd like a peddler just opening his pack: His eyes - how they twinkled! his dimples how merry, His cheeks were like roses, his nose like a cherry; His droll little mouth was drawn up like a bow, And the beard of his chin was as white as the snow; The stump of a pipe he held tight in his teeth, And the smoke it encircled his head like a wreath. He had a broad face, and a little round belly That shook when he laugh'd, like a bowl full of jelly: He was chubby and plump, a right jolly old elf, And I laugh'd when I saw him in spite of myself; A wink of his eye and a twist of his head Soon gave me to know I had nothing to dread. He spoke not a word, but went straight to his work, And fill'd all the stockings; then turn'd with a jerk, And laying his finger aside of his nose And giving a nod, up the chimney he rose. He sprung to his sleigh, to his team gave a whistle, And away they all flew, like the down of a thistle: But I heard him exclaim, ere he drove out of sight- Happy Christmas to all, and to all a good night.

#599 What The Prick

Sophia is a college student with type 1 diabetes.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 599 of the Juicebox Podcast.

On this episode of The Juicebox Podcast, I'll be speaking with Sophia. She is a college student who has type one diabetes, and she is here today for your listening pleasure. While you listen to Sophia and I kick it around, 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. There is so much music left to Wendy exchange.org forward slash juicebox diabetes pro tip episodes are diabetes pro tip.com. And at juicebox podcast.com. They begin episode 210 in the podcast player that you're listening in right now please don't forget to subscribe in a podcast player. Please don't forget to tell a friend about the Juicebox Podcast don't forget about the private Facebook group Juicebox Podcast type one diabetes. There, I used up most of that music now we can get to the show.

Hey, good news. There's no ads today. Don't worry, they're still advertisers just I don't want you to worry. For me, I'm just I've kind of completed my obligations as the Year is coming to an end. And so I'll be giving you less ads, fewer ads, my wife would say I should say fewer. I believe that is grammatically correct. I'll be giving you fewer ads through the rest of the 2021 year. I am however going to take this opportunity to thank everybody who has bought me a coffee at buy me a coffee.com Ford slash Juicebox Podcast. I guess I should also take this time to explain that when you go there, you're not actually buying me a coffee. You just you know it's it's a place to give money to people to support content providers. It's a cute little name buy me a coffee. But I don't actually drink coffee. Not only do I not drink coffee. I've never had coffee in my entire life. Not once ever. I actually tried to avoid caffeine. not the point. The point is, thank you 329 People bought me a coffee this year. And this is something that I I didn't even want to do this. Like somebody who listens to the show was like you have to have a place where I can give you money. And I was like I really don't I don't want to do that. And they were like No, no, please. Anyway, somebody explained it to me. And I'm going to talk about in episode 600, which I think is the next episode. But for now, thank you to all of you who have done that. And to all of you who will do it in the future. It means a lot to me, I try really hard actually to use that money to support the podcast to share. I've bought computers and microphones and hard drives and backup systems and all kinds of boring technical stuff that helps the podcast run smoothly. It's stuff you don't see, but it is it's expensive, and it's necessary. So thank you very much. And with that, let's listen to what Sophia has to say.

Sophia Livolsi 3:27
My name is so feelable see, I have been a type one diabetic for a little over seven years. I'm a college student. I'm a blogger as well as of recently in the past couple years. But yeah, thank you for having me on the show. I'm excited.

Scott Benner 3:41
I am to college student what were in college, what parts so

Sophia Livolsi 3:47
it's kind of small. So I don't know if you've heard of it. It's in Texas. It's called the University of North Texas.

Scott Benner 3:52
Okay. And what what year are you?

Sophia Livolsi 3:55
I'm a junior cool.

Scott Benner 3:56
Um, you're just turned 21 are about to?

Sophia Livolsi 4:00
Yes, I just turned 21 like a month ago.

Scott Benner 4:02
My son's halfway through his junior year right now. So

Sophia Livolsi 4:04
is he 21 yet?

Scott Benner 4:07
A couple more weeks? Oh, I

Sophia Livolsi 4:09
bet he's excited. And you're feeling some type of way?

Scott Benner 4:12
I don't know. Like, I don't think anybody's a drinker in the house. So I don't feel like it's gonna just open a cavalcade of craziness. And I wish I wouldn't have said cavalcade of craziness so early on because that would have been such a good title for the episode. Title. But I mean, you know, it's, it's an it's a great time. I would think though with COVID going on. It's really strange because I think he's about to petition his school to skip a semester. He was going to school, virtually from his bedroom last year, the first half of his junior year. It did not go well. In his expert, you know, it wasn't like a grading thing. That was the problem. It was he just really didn't like it. He takes kind of a difficult mathematic. To track and he said it just didn't lend itself well to it. So I think he's gonna skip this one and hope that they end up back at school in the fall in a more normal way. So Wow. Yeah. kind of sucked. You're in Texas. So you're probably don't have any of that going on, right?

Sophia Livolsi 5:18
Oh, no, we haven't going on all of my classes are online. They are slowly

Scott Benner 5:22
Yeah. Yeah. Hitting from home?

Sophia Livolsi 5:26
Um, no, because my parents live in Arizona.

Scott Benner 5:29
Oh, so you're, you're online from your dorm? Well, from my apartment, apartment, yeah. But still from your residence like that? How is that?

Sophia Livolsi 5:38
Um, I would have to agree with your son. It's not the best just because I'm such a big people person. And learning in person is a lot easier for me. I have a lot of friends as well, who are opting to, like skip a semester and see what happens. The following one, but yeah, I mean, it's going decently. Let's say that.

Scott Benner 5:57
Yeah, I'm glad for you. I really am. I was hopeful for him. But he's just, you know, I think one class was a problem than the next class was a problem. And he's just like, he got through it. And he was able to hold on to his grades. But, you know, at some point, he's like, this was incredibly stressful, and really harder than it needed to be. And none of the other benefits of college like I'm not with my friends are like, so there felt like there was no, I think his life started feeling like a cycle, like, get off, do this thing. waste time go to sleep. Like I think his life turned into that. And he just didn't like it. So what's the degree you're looking for?

Sophia Livolsi 6:33
So my degree is kind of interesting. It's called Business Integrated Studies. And it's where you can specialize in two fields without having to double major. So I'm doing marketing in organizational behavior and human resources.

Scott Benner 6:47
Oh, that's really cool. Have they been offering that long?

Sophia Livolsi 6:50
Um, no, it's actually a really new program. And that's the main reason why I ended up coming here was for that program. That's what it's intense. But it's good. I'm learning a lot.

Scott Benner 7:00
I'm glad for it. Yeah, thank you. Of course. How old were you when you were diagnosed?

Sophia Livolsi 7:05
I was 13. Right, right in the middle of puberty. Let me tell you,

Scott Benner 7:09
right. On puberty. You got your you got your you got your period and your diagnosis in the same couple of months.

Sophia Livolsi 7:18
Yeah, pretty much a fun time to be alive.

Scott Benner 7:22
It's a great story that you'll just never forget. You know what? No, that's anybody else in the family have it? No, nothing? Yeah. Anybody? Yeah. Celiac or thyroid or anything like that?

Sophia Livolsi 7:38
No, it was super weird. We don't have any autoimmune things going on. Okay. So it was pretty unexpected. I remember when I was diagnosed, um, I ended up going to the hospital and my dad came up because my mom was on the took me my dad was like, No, no way. Like, he was like, Are you sure? We were like, yes. We promise they're not lying.

Scott Benner 7:58
They wrote the paper already. It's done. We have it. I don't think we can give it back now. What do you remember much of that time?

Sophia Livolsi 8:08
I do. I do remember it pretty vividly. I was in middle school. And it was actually the week of cheer tryouts. And like, looking back, that was such like a insignificant time. But you know, when you're in middle school, and you're like playing that sport, and you're like, oh, my gosh, I have to get in. Or I have to you know what I mean? Like, it means the world to you. Yeah. Yeah. So it was that week, and my mom had called my doctor because obviously, I was like, peeing, all the time, drinking a ton of water, all the classic symptoms, and my mom was like, what's up with this girl? And the doctor was like, Oh, she sounds like she has type one diabetes, bring her in the next day. And so my mom kind of had a hunch, but she like didn't obviously want to tell me until we went. And so we went shopping for like, my cheer trial outfit. And I was like, oh, yeah, I'm gonna look so bomb. I'm gonna kill this. And she was like, oh, yeah, we have to go to the doctor after. And I was like, Oh, okay. And then we went and that it all kind of went down then. Belong story short, I still ended up going on the cheer team in middle school. So that was exciting. But yeah, it was just a weird week, that week for sure. There's just a lot going on.

Scott Benner 9:14
I'm always it becomes more and more interesting. As the more people I talk to that a lot of kids who are diagnosed in that age range have a story that sounds like my mom said, we were going to do this and then just swing by the doctor's office.

Sophia Livolsi 9:28
I was like, they're trying to make it Nazi was bad. They're like, Oh, we're just gonna I swear to you real quick.

Scott Benner 9:34
I swear to you, I've heard that a half a dozen times and somebody's like, their mom's like, you know, we're just gonna run out Piggly Wiggly, grab a gallon of milk we might drop by the doctors, you know, see what they say about stuff and then you know, go home after that. It's really is it must be some sort of a, a tool that parents try to use to just, you know, buy a little more time or deflect a little bit from the seriousness of it or something like that. But what happens when you get in there like we you have Having a bunch of symptoms.

Sophia Livolsi 10:02
Yes, I was all the classic symptoms. And then another weird one that I had was water tasted weird. And like, we think it had something to do with just like the ketones and like the weird flavor it gives you in your mouth, you know what I mean? It

Scott Benner 10:15
tastes metallic, or fruity or

Sophia Livolsi 10:16
kind of I literally just wouldn't drink water. And my mom was like, twice. But so yeah, we went in all the classic symptoms, tested my blood sugar, and it was like 500 something. And then we went in and did the three days in the hospital like most people do. Learning all the things there is to know

Scott Benner 10:34
yeah, now I have no medical background whatsoever. But I find myself wondering, like, I know, some people describe a metallic taste or a fruity taste or smell to their breath. I wonder if it's actually something in your mouth. And then you blend it with water, which has no other flavor. And if it doesn't end up feeling like though, that that liquid tastes like something, I realized you and I are not going to get to the end of that idea. But

Sophia Livolsi 10:57
it's an interesting thought, though. Like it makes sense. Yeah,

Scott Benner 11:00
because it's just so strange that that water tasted differently.

Sophia Livolsi 11:03
But I know that was a weird one. Okay,

Scott Benner 11:06
so seven years ago, what kind of gear did you leave the hospital with.

Sophia Livolsi 11:12
So I left the hospital with my little blood sugar, meter and pricker. And then just the like, vials of insulin. I don't know, if everyone's had the same experience, most people I've talked to have, but my doctor basically said you need to, like just do standard shots for a little bit. And then you can think about getting on a pump or pens. And so I left the hospital with just the standard stuff. Gotcha.

Scott Benner 11:40
And did you basically follow the prescribed course? Or did it go differently?

Sophia Livolsi 11:46
I did follow the prescribed course. Yeah.

Scott Benner 11:49
How long were you injecting for? Um, are you still,

Sophia Livolsi 11:53
I'm actually back to injecting but I'm on pens. But for the first little bit when I did the vials, I think it was for around six months, I believe.

Scott Benner 12:02
Gotcha. And then you try to pump did it for a while.

Sophia Livolsi 12:06
Yes, I was on the Omni pod. And I love it. I did really like the Omni pod. But I'm just I'm one of those people that likes to switch things up. So I ended up taking a break. And then I went back on it. And now I've been on a break for a while again doing patents.

Scott Benner 12:21
You know, it's interesting you say that, because it took me a while to figure out that there there was a personality that that happened with like, there's a there's a certain personality that's like, Oh, I did this for a while then I did that for a while I did this for a while. And I used to think like, oh, they didn't like their pens, or they didn't like their pump or something like that. But now I come to believe that there's just a certain segment of the population who just likes to change it up sometimes. Is that how you would describe it?

Sophia Livolsi 12:45
That is how I would describe it. I know it's kind of weird, because pumps are just so helpful. And they do make lot like life easier. For sure. But yeah, I don't know. I just I like a little change once in a while. What can I say?

Scott Benner 12:55
No, I just I'm just saying like, at first. I didn't see it that way until like, yeah, yeah. No, I gotcha. Yeah. Then I was like, Oh, this is just a this is a lifestyle thing that happens to revolve around their diabetes. Like you're a little bit like, do you change other things in your life? Like, like, Are you a person who like moves the sofa from one side of the room to the other and stuff like that once in a while?

Sophia Livolsi 13:17
Actually, yes, I am. I did not correlate that until just now. But yes.

Scott Benner 13:22
Yeah, I live with a person like that. Who? Like I thought this cabinet was for these like, no, it's this now where the thing that was in there, that's over here now. Why? I don't know. Okay, I just, I just go okay. It's finally funny. It doesn't matter to me one way or the other. That's pretty cool. So, management wise, are things going the way you expect? And how did it go through? Like, what's the run up been? Like, where are you now? And how did you get to it?

Sophia Livolsi 13:54
Like in terms of gear,

Scott Benner 13:55
what I know, I guess I meant more like, you know, outcome. The outcome? Yeah. Like are is your A one see where you wanted is your standard deviation where you wanted? How did you get to that?

Sophia Livolsi 14:06
Yes, yeah. So right now, my numbers are pretty good. They're where I want them. They are a little higher than normal. I actually had an endo appointment a couple weeks ago. Um, but basically where I'm at now is I'm on the freestyle Lee Ray. And I'm doing my pens as I mentioned, it works pretty well for me, and another big one for me is working out. Like, for example, last week, I was able to get to the gym. Like for the amount of times that I had planned in my life it's crazy my blood sugar's react so well, to what I get active. And I know a lot of people are like that. And then like yesterday, I wasn't able to get to the gym and I was running higher. So yeah, exercises become a big part of my management

Scott Benner 14:57
success. That's probably not something you thought of when you were younger I would imagine.

Sophia Livolsi 15:01
No, it really wasn't Definitely not. I mean, I was more naturally active when I was younger. But as I've gotten older, like life gets busy, I get lazy, I don't want to go workout.

Scott Benner 15:10
Well, you know, it's funny, as you're talking about it, it seems to me that, you know, when you hear younger kids or people who are doing sports, and there's like, oh, you know, I can never keep my blood sugar up on I'm active. I wonder if it isn't that there's a sedentary nature to their lifestyle, not sedentary, but a slower nature to their lifestyle, that requires more insulin, and then all of a sudden, they get up and go do a thing. And then during that window, they just don't need all that insulin. I know that, you know, generally speaking, if your settings are pretty stable, you just don't want to have active insulin while you're being, you know, athletic or active. But I wonder it made me wonder there's something about the way you just said that that made me wonder if that isn't part of what happens during activity. And now that you're an adult, if you keep your activity stable over weeks, then your adjustments here and so on probably are lower, you probably need less insulin, and at the same time, you don't have as many lows while you're being active because you have that balance between the activity and the insulin levels. Does that make sense?

Sophia Livolsi 16:09
Yes, it does. And I know like this isn't speaking for everyone, but that's definitely true for me. Okay. And that is an interesting thought there. diabetes is just so fluid, isn't it? Like? Yeah, there's so many things to think about.

Scott Benner 16:20
There's so many times where the podcast is so helpful to me because somebody's like, I don't even in this moment. I know that 90 seconds ago, you said something that made me put those thoughts together. But I don't even remember what you said. It's just the way you said it that like, maybe think like, Oh, I wonder if that's this. And that that's that? Well, it's excellent. I'm glad that you're on a good exercise schedule. I would probably need to get on one as well.

Sophia Livolsi 16:43
I know it's been hard man with quarantine Molly snacking, snacking moments.

Scott Benner 16:47
The other night, we just made potato chips. Like made them like started with potatoes and ended up with chips. It took hours because it's not an easy process. And so we were just like, alright, well, I don't even know if we want to eat them. We just needed something to eat the hours up here. And they

Sophia Livolsi 17:04
were they good at least. My wife

Scott Benner 17:07
really like them. So anytime she says something positive. I know. It's like amazing because she begrudgingly says nice stuff to me. So when she she's actually being nice. I'm like, this must be amazing. But I like them. I thought they were I don't eat a lot of chips. But I had a few and I thought they were really good. That's the other thing. You're making five pounds of potatoes and the potato chips then you take like a handful and you're like, Alright, thanks. Oh my gosh, it's the weirdest part about being the cook. Sometimes you put in all the effort and you just, you know, then you look at it. Like I should probably eat all these but it's not really the way it goes. Okay, so what about the transition from home to college? How did you find that to be? I'm just jumping in here very quickly to say I hope you're listening to the podcast in a podcast player. And if you are, please hit subscribe so that you get the new episodes every time they come up. Plus, it helps me you understand I'm saying like I rank higher with more subscribers. Downloads are attractive to advertisers. Subscribe. I think on using YouTube, they're very slick about they're like don't forget to subscribe and hit the bell and I don't really know how to do all that. Just I just really kind of know how to be honest about it. I need you to subscribe. Okay, so if you're listening in a podcast player, hit subscribe, please, or follow some of them say follows them say Oh, everybody's different. But follow subscribe, tell a friend, etc, etc. Back to Sofia. Thank you. That was awkward goodbye. How involved were your parents and your management leading up to you leaving?

Sophia Livolsi 18:41
Yeah, so that this has definitely been a big transition for me because I was living with my parents until around a year ago. So it was really interesting in the fact that I moved out in January of 2020. And then like COVID happened and everything. So it was just, it was just a very interesting year. And I feel bad for my poor parents because they're finally like, okay, like, we'll get you ready to move out. And then like, the world just goes nuts. But, um, since I was diagnosed at 13 My parents kind of approached it in the way of they asked me like, do you want to handle this, like mostly on your own and get used to doing things now? And we'll support you or do you want us to kind of take the lead, and I decided that I kind of wanted to take the lead in my own management. So since diagnosis, I've been doing a lot of it on my own with, of course, the support from my parents, but like they're involved, like they will check up on me and help me in any way that I need. But I've pretty much always been independent, if you will. Um, so that wasn't too hard of a transition, but it was hard for my mom, especially just because like you know how parents worry She just had a hard time with me going off to a different state. Okay, and her not being there if anything were to go wrong but she does have access to my blood sugar's which is good. But yeah, it was an interesting transition just going from like picking up your own prescriptions and like going to your own doctor's appointments because that's something my parents did a lot of with me. But yeah, they've always been really supportive. But I was mostly independent. So it wasn't crazy. But I feel like it was definitely hard on my parents to like, let me go and like for them to be so far away.

Scott Benner 20:34
So they weren't necessarily people who were involved at, you know, a meal a day or you didn't go to them and say, Hey, I'm having a problem here. I don't understand it. You were taking care of it on your own. But there were they ever involved like, did you ever at 17 years old, go to them and say, I don't understand why my blood sugar's like this, or that just wasn't the vibe.

Sophia Livolsi 20:54
No, yes, that was the vibe. But they were very, they were respectful. And I think they were trying to like prep me for when I did go. They basically helped me when I needed help. But they also wanted me to like, learn on my own, because that's also kind of what I wanted. So it was it was like a half and half like I did a lot of things on my own. But then if I was struggling, I would ask them and they would be like, this isn't

Scott Benner 21:18
this that makes perfect sense to me. Really the

Sophia Livolsi 21:20
Yeah, it's an interesting dynamic, because a lot of my other friends were diagnosed younger. And so they they found a weird, they're like, What, like one of my best friends. She's a type one diabetic. And when I go over to her house, she's still asked her mom, like, hey, how many carbs are in this? How many?

Scott Benner 21:37
But that doesn't occur to you to do it. All right, you're not like, you never have that thought for yourself personally. So you think it's that she maybe was younger, and had more time? Where that was the involvement from her mom, whereas for you, it wasn't as much?

Sophia Livolsi 21:51
Yes, yeah, yes, exactly.

Scott Benner 21:53
It's interesting. It really is just the difference of a few years in one direction or the other and, and kind of what gets ingrained do I love the idea of being involved, but not completely involved, especially as you're getting ready to leave. But I also find it just rings very true. The idea that your parents are probably like, even if they were trying to stay out of it a little bit and make sure you could do it on your own that the minute that you actually leave is overwhelming to them, I imagine.

Sophia Livolsi 22:21
Yeah, it was my sweet parents. I love them for sure. We have a great relationship. And like, like I said, like with COVID happening. Dude, I was getting calls from my parents like 10 times a day, they were like, are you okay? Do you want to come home? Do you need anything?

Scott Benner 22:36
You know what they meant? They may come home right now.

Sophia Livolsi 22:39
I know.

Scott Benner 22:41
Well, that's listen, I would rather have that then. Then the opposite, right?

Sophia Livolsi 22:46
No, me too. Me too. Okay,

Scott Benner 22:49
so you're off on your own in Texas. What made you what made you reach out and like create an Instagram account and a blog and stuff like that?

Sophia Livolsi 23:00
Yeah. So when I was younger, I think even just a couple months after I was diagnosed, my mom was like, let's go get involved and stuff. And so for the first couple years, we were just like doing a lot of volunteering, going to different events. And during that time, I kind of developed a passion for just connecting with other type one diabetics and learning things from them. And then also maybe teaching them some things as well. And so when I was 18, I graduated high school, I was like, you know, it's kind of just like, on my heart to start a blog, like, that's just something that I really want to do. And so I kind of sat on it for a little while. And then eventually, I made it. And it's it's definitely been a journey. It's been, like, bigger than I ever thought it was going to be and more involved than I ever thought it was going to be. But yeah, the main goal of it was really just to like, connect with people and like inspire people, and then obviously, learn a lot myself as well. And one thing I love to tell people, like, the people I meet on there means so much to me, my a one C like before I started the blog, was like, it was like hi sevens. And then like the next time after I went and got my agency checked after, like, interacting with people and learning so much from the Instagram, it like drops to like, a seven or something like that. It was just nuts. Like, I think the type of diabetes community is incredible. Like and it's an amazing thing to be a part of, yeah, the

Scott Benner 24:30
way that people so freely share ideas and and in a way that's not as much instructional as like, it's more like, look, I'm doing this thing. This is how this works. It's it's the only mean like the difference between sitting back and like acting like a thought leader and just saying like, these are the things that I know to be true and it's boring and nobody cares. You see it you see it on Instagram, you're like, oh, look, there's a person doing this like what is that? Doesn't take a ton of explanation and you can kind of like watch them from afar and figure out this works. I'll try this And did you ever feel like it gave you something to be accountable to? Or is that not part of it? I'm not sure.

Sophia Livolsi 25:10
I would I would say that's a little bit of it a little part of it.

Scott Benner 25:15
Yeah, but not necessarily in

Sophia Livolsi 25:17
terms of posting. But I do have quite a few friends that I like chat to from there on a daily basis. And so I guess just like talking to people on a one on one level, like, how are you doing? How's your sugars? Like what's going on? But yeah, it's it is nice, because I guess there's a little bit of accountability there.

Scott Benner 25:34
So you said, you said that it ended up being bigger and more, I felt like you said, more work. So how did it end up being more work than you thought?

Sophia Livolsi 25:42
Oh, yeah, I said, more involved. And what I mean by that is, I kind of started it is just like, a fun little account. But then it just, it just kind of got bigger. Because I mean, I I enjoyed it a lot more than I thought I would. And I started like, just being more active on there. But yeah, and it's just great to connect with so many people, I didn't think I would connect with as many people as I have. I guess it

Scott Benner 26:09
was just like a happy surprise that it was that it reached people and that took more more involvement to, to connect with them talk back and forth and put up a put up, I guess, content and everything that goes along with it.

Sophia Livolsi 26:23
Yes, yeah. Yeah. But I'm glad I'm so glad of how it all turned out. It just blows my mind. Sometimes. I'm like, Man, I thought I was like making a little Instagram account. Now, it's just something totally different. Like, I'm sure maybe like, you know, when you first started your podcasts, obviously, it's huge now. You know, like, you never expect it to be what it is. I guess like, I

Scott Benner 26:43
don't know, yes, it's a fee, I have to, I have to absolutely say that. Whether I come off that way or not on the podcast, like if you knew me, personally, I'm pretty. I'm pretty. This is gonna sound odd, but I'm kind of quiet privately. And I'll start talking if you want to talk, but I'm a I'm a fairly kind of quiet person. And I am genuinely stunned every day. Like anytime someone like using Instagram as an example, anytime the podcast gets tagged in something on Instagram, like my first genuine reaction is always like, oh, like, that's amazing that somebody is tagging me. Like, I just I always feel like that. And I do wonder if it's not. You know, like, you could get psychological about it. But I just think that I'm trying to do this thing. And it's stunning that it does it. Like it's not your, I can speak for myself. But I've heard enough other people say this as well. You don't start something like this with the expectation that it's going to ramp up in scope. You just think I'll do it. Like, I'm going to do this and you don't start it for any particular reason. I guess if you're like a, like a business person, you might think I could start a blog and I can build it up and everything. I just never had that thought. So. Yeah, it's it's, it's a, it's nice is the best word for it. Like, it's really nice when you realize that it's reaching somebody and that they're finding value in it.

Sophia Livolsi 28:06
I know, I know, it's just it is a beautiful thing, because you started just kind of to like, dip your toes in and maybe help other people maybe learn things yourself. And it's just it's just, you know, just makes you feel grateful. It's just awesome. Like, the community is amazing. I love the space. Yeah,

Scott Benner 28:21
I agree. I think that no matter, the impact, scope for people, whether someone's talking to 10 people or you know, 20 people or 1000 people or whatever they're doing, I think that it's all of those people that make the idea of a community a reality. Oh, yeah, you know, 100% Yeah, I tried to make the point recently to somebody and I don't know how articulate I was about it that, that, um, there were some people in the past who thought of like the diabetes online community, a certain people, and then everybody looked to them, but I never saw it that way. I always thought it was like, either were certain blogs, for instance, back in the day that were much more popular than others in cliques. But I always thought it was the collection of everybody that made the feeling so

Sophia Livolsi 29:11
yeah, that's a good way to look at it. Because it's true. Yeah.

Scott Benner 29:14
Like somebody is always gonna have more readers, you know, than somebody else. But but it, but if it's just them, and no one else, it's not a community. It's it's a it's a content hub, which is fine. Yeah. Nothing wrong with it. But I'm just saying, like, when you have somebody out there, who's earnestly putting in the effort to Facebook page or an Instagram account that has five people looking at it, they're still putting in that earnest effort, and there's an energy about that, that I love. So I don't know if that makes sense. Yeah, that's a good point. Yeah. Well, so you're doing that. And that's sounds like it's working out. Like very nicely. It's given back to you and you're giving back to other people. It's terrific. Is there something specific you wanted to come on the show about or what what was the reason for reaching out,

Sophia Livolsi 30:01
I don't know, I guess, um, back in the day when I was kind of involved in a lot of organizations, like I was mentioning before, there was one summer when I was intern interning at JDRF. And that was kind of when the idea really came to me, like, Okay, I really want to, like, do something. And I remember kind of looking at podcasts, because the drive from my house to where the Dallas office was, was like, almost an hour in rush hour. So I was like, Okay, I want to start listening to something. And so during that time, on my way home, I would listen to your episodes. And so I don't know, like, just when I read, I know when I reached out to you, like, a couple months ago now, but I was kind of reflecting on it. Like, man, during that time when I was listening to was the juice box when I was really like buckling down on. Okay, what do I want to do? So I don't know, I just kind of wanted to come on here. And just, I don't know, be? Yeah, like, I don't know, if there was anything I could share with anyone that would like help, or whatever. I don't know.

Scott Benner 31:01
Well, that's a common feeling for people who reach out that they just are hoping to say something that helps somebody else. And I like that there's no like plan behind it that you're not like, Yes, I do have a list here, Scott of things that I wanted to go over. I like the free flowing nature of a conversation like this. So what I mean, in your opinion, what do people who have diabetes? Who are, you know, we're where you were even a few months ago, or maybe struggling, you know, significantly? Like, what's the what's the building blocks of what they need? In your opinion?

Sophia Livolsi 31:33
Could you repeat that? I think it cut out a little bit.

Scott Benner 31:36
No, don't worry. I'm just wondering what you think the building blocks are for people who are struggling or trying to do better? Like, what is it they need to know in your opinion?

Sophia Livolsi 31:45
Hmm, that is a great question. Because I feel like, it's interesting, because a lot of people I connect with men in my life, as well. Everyone's so different, like, just diabetes as a disease is so different for everyone. And people definitely need different things to be successful. But one thing I would say is having a community of some sort, whether it's your friends, your medical team, like the Instagram community, your family, whatever, I do think that's a really important piece of the puzzle, that a lot of times people will not focus on as much because it can be really easy to get caught up in, oh, I need to have this number, oh, I need to do this to manage my diabetes perfectly. But like you said, like, it's just it is nice to have that accountability and like ideas from other people. Like my management changed completely when I like, started having a community, you know,

Scott Benner 32:41
yeah, no, I I see that happen so frequently, that it can't be, I just I couldn't possibly deny what you said as being true, is at some point. At some point, you meet a person who has, I mean, I I'm imagining there's, at some point, I could, you can find the end to the, to the needs that people have, right, like we can make some massive bill master list, which we're not going to do. But I think that um, you can, I've tried to like narrow it down to the most common things that I see people ask about or struggle with, and hoping that you can give them a lead in, you know, there's some people who are afraid of insulin. Some people don't even think of it as the insulin they're afraid of. They think they're afraid of the lows. It's, those are two, basically the same thing. But they're thought of two different ways. You know, there's some people who just don't understand, you know, how insulin works. And you know, you can tell people, like I think Pre-Bolus things important, it might not be for everyone, like some people might need a five minute Pre-Bolus Or some people might need a 10 minute, and some people might need more and more. I think that the the blockade to reaching those people in the past has been that everyone wants to say something that covers everybody. And you just can't do that. So you can't you can't say something actionable that will answer every person's need. So what I've tried to do is just say, Look at its very core, I think if you get your Basal insulin right, if you understand how your meal insulin works, if you understand how different foods impact your blood sugar's if you try to stay flexible, like you know, these sort of more simple ideas. I think that that has the best chance of reading the watt reaching the widest group of people. Because when you try to start drilling down, it's just nearly impossible. And not that somebody couldn't do it. Like you could you could say to yourself, like I'm Sophia and I'm going to make a blog about people who only need to Pre-Bolus Five minutes before they eat. But then how do you find those people? Like let's say your information was rock solid on our topic? How do you then find those specific people so that they can find the specific information and so they're part of me feeling Like it's a funnel, like you need a big wide mouth to bring people in, and then hopefully there's enough information once they get in there, they can find the thing that works for them before they, you know, screwed up the other side of the funnel. So

Sophia Livolsi 35:12
I don't know. Yeah, yeah, that's very true. And one thing I like about your, what you like, share, and a lot of a lot of people are pointing this out, like as of recently, but like management and like diabetes care has been so set for so long. And it's just nice to see like, oh, I can Pre-Bolus like 15 minutes before, even if someone has to do it five minutes before and even if my doctor has never told me about that before. Yeah, like, there's a lot of great information coming out in this day and age as well. Like, it's just cool. I can't imagine being a diabetic like, even 20 years ago, like, when I think about it, it blows my mind

Scott Benner 35:51
alone is the first word that comes to my mind. Like they people must have felt so like this disconnected from everything. I just had someone on to start the season, excuse me at the beginning of January. And you know, she's an adult who was diagnosed as an adult, and didn't get good information, didn't even know she had type one for a while, which happens, like crazy amount more than you would think it does. Like, they send you out the door and like you're a type two, and you're and nothing gets better. And you're swallowing Metformin, and nothing is happening. And it happens a lot, you know, just a lot. And so even in 2020, I think it was only a year ago. It was chill. It was the I forget what the name of the episode was the first one in that came out in 2021. She still got isolated, because the doctors weren't helping her. She didn't know what to do. She was lost. She just ended up best. And she was able to dig her way out through. I think she said she found a couple of YouTube videos, she found the podcast, she did a couple of things. And she finally found a better doctor. But to your point 20 years ago, there's not a there's no podcasts, there's no content. There's no you know, again, we mean, maybe you would have been 20 years ago, you're not even finding a blog, honestly. Probably, you know, so. Yeah. What did those people do? Except, you know, struggle.

Sophia Livolsi 37:14
It's a terrible, terrible thought. But hey, they made it through. They're awesome. I love hearing stories of people who are like, yes, I've been a type one diabetic for 50 years. And I'm still going strong like, Man, that is some inspiring stuff.

Scott Benner 37:27
No kidding. It really is, especially like I talk to people in their 60s, you know, who are diagnosis children and, and it's funny, you ask them questions, and I don't even think they know how they got here. They're just like, I just the doctor told me to do it. And I did it. You know what I mean? Like, it's, it's, it is really interesting, it really is that they that that can be the truth. And we have the ability now to go talk to them and hear their stories so that other people can hear them too, because I think that becomes important perspective. Because you know, if you're diagnosed today, you know, right now today, you're going to take no comfort or solace in the fact that this is the best time in the history of the world to have type one diabetes. Oh, definitely not right, that is not going to be comforting to you whatsoever. And the only way for you to take some comfort out of that is to hear a story from someone who's like, oh, I used to have to mix regular and mph or I had to boil needles, you know, or, you know, I we used to have to pee on a thing to get my blood sugar. Like, those kinds of stories will make you be like, so it just takes two hours for the Dexcom don't warm up. Okay. Fine with me. Yeah. It gives you that perspective that you need. Because, you know, you see it like you're young, right? Probably you you don't feel young, but you're young, in my opinion. And, and so like when you see something happen in the world may there it's social or political or something like that. It feels like the very first time it's ever happened, because it's the first time you're seeing it. And that happens for everybody for everything, you know?

Sophia Livolsi 39:05
Yeah, that's a very good point. That is, yeah,

Scott Benner 39:09
it just, it's new to you. And so you know, the amount of like, notes that I get from people that are always like, I'm going to start a blog. And I'm like, okay, because people need to know about this. I'm like, That's great. Like you do that if you feel like you want to do that. That's fantastic. But there's always the part of me that's reading it. It's like, you're just learning today that, you know, there's not great, sometimes there's not great testing for people when they're being diagnosed or whatever. The thing is that they're, you know, like feeling very passionate about in that moment. Yeah, it's amazing to see all their energy and you think, right, get out in the world and do it because you'll reach some people that somebody else won't reach. And that'll that'll be terrific. But it's it's really interesting to me that that feeling of I've just seen it for the first time. So therefore this must not have existed before today. It's just such a human reaction.

Sophia Livolsi 40:00
It is a human reaction, isn't it?

Scott Benner 40:03
So where do you hope to take all this from here?

Sophia Livolsi 40:07
That is a great question. Um, I don't know. I mean, one big part of like, my platform, I guess is it's funny this summer after I was diagnosed, I started doing pageants for the first time. Okay. And so that has been a really fun place to take, like advocacy. And I'm going to be competing in another one this upcoming summer if like, COVID permits, and I'm excited for that. And then, like, now, after starting the blog, like, although it wasn't originally a hobby, I think it would be fun to work in the diabetes field, not necessarily solely as like, an influencer, quote, quote, but just just somewhere in the diabetes space, just because I don't know it. I'm very passionate about it. And I think it's so interesting. And I would never have a boring day at work. Because I'm very interested in it.

Scott Benner 41:05
That's cool. I hope you find a way to do it. Yeah, thank you. Yeah, no, for certain. It's, it is. I am not a fan of the word influencer as well. Yeah, that's why I was like, Yeah, and I could kind of hear it in your voice. When you said the same thing. I had. You know, there's sometimes I do things with people or and I was on this call on time. And they're, like, you know, said something, like, evolve our influencers, you and I just stopped him. I was like, Listen, please don't call me an influencer. Like that, to me. To me, an influencer feels like a person who can get eyes on them. And then can take those eyes and point them at a thing, a link or something like that. And it might be, I don't know if it's high minded, or if I'm wrong, or whatever. But I like to think that if I like to think that the information that I put in the world is so is valuable enough that people who are familiar with it, trust me, because they trust what they've heard. And if then that makes it possible for me to say, hey, you should check out the T one D exchange, for example. I don't know if I'm splitting hairs. But I don't think of that as being an influencer.

Sophia Livolsi 42:17
No, because it's a different thing. When it's something you believe in like, you're like, I want to share this with you. Because I think it's important. You know what I mean? Like, you have that passion. It's not just go look at this link, so I can get some moolah.

Scott Benner 42:29
I never hold up a can and I go, Hey, have you ever drank this after a hard workout? Because I do, and it's really great. It just No, I, I one time, dipped my toe in paying attention to like one of the food companies that was like heavily using influencers. And they contacted me and they were like, you know, we'd like to, and I said, Look, I can tell you some ads. I was like, but I I'm not going to say first of all, I I'm like 100 years old, like, I don't think you want me going on Instagram being like, this is hip, because I think people would be like, uh, he's not hip unless he's talking about breaking his hip. So you know, like, I don't think I'm the right. I don't think I'm the right person for that to begin with. But I just told them, I was like, Look, I'm not gonna do that. You know, I appreciate that. You think it would work. But I said, I'm happy to sell you an ad or more than one ad and tell people but I want it to be clear to people that it's an advertisement, not me saying I eat your food. Like I tried all their food. And I liked some of it. And some of it I didn't like. So when I did the ads. I was like, Look, I tried this. And this was good. If you want to try it, here's a way you can try it. But I don't like that. And again, I appreciate you saying what you said because I don't think I am splitting hairs on the on the subject. But I don't. I don't like the idea of everyone's looking over here. So I'll hold some stuff up and then charge somebody for it. Like, I don't know if that's the I don't know. Like, I can't even tell us. I'm saying I know how I feel about it. I know that I'm both passionate and resolute about the idea. But I don't know that I can explain it. Exactly. It's just the vibe. I don't like that vibe.

Sophia Livolsi 44:09
For some reason. Yeah. No, you what, what you mean is coming across. That's my thank you. Cuz I don't have the word. And also, can I just say though, please, I was thinking about this when you like started on the topic of like, doing ads. If you did do an ad. Like I just feel like it would be hilarious. Like, if you had like an Instagram video of or something like, and you're honest. You'd be like, Yeah, I tried this food. It was all right.

Scott Benner 44:32
You might like it. I definitely didn't.

Sophia Livolsi 44:35
Just like I'm just imagining it right now. I feel like it would just be hysterical.

Scott Benner 44:39
I have to tell you that in my heart of hearts. I think that's the the most direct way to people is through honesty. And I don't I just think that a company like that wouldn't be up for you saying hey, their pizza is great, but this enchiladas like, you know, like I I don't think they'd be up for it. But I think I think the honesty would drive more people than you think. You know? So, and I do, I do feel lucky to that, that the show is sponsored by, by brands and companies that I can 100% Like stand behind. Like, I would be mortified if I had, like, if I was in a position where I'm like, I have to take an ad from a meter, for instance, but I've never used this meter before, but I'm going to hold it up and say it works. You know, like, I, I don't know that I can bring myself to do that. I'm happy to have not have to find out if I could, but I, I don't think that I could. So

Sophia Livolsi 45:30
yeah, that's the thing. There's just no, there's not a lot of people in the space like this. Like, I can't even really think of anyone, but it's just being genuine. Like, you're Jenny, you actually use what you share, I actually use what I share, like, is just being real about it.

Scott Benner 45:43
Yeah, no, I hear it. I really do. And, you know, I've heard people make the argument that, you know, you can't do that you shouldn't do that on Instagram, because you're using your, you know, your platform to move people for companies and all that stuff. And, and I don't, I can't speak to that. I don't know what it's like to run a very popular Instagram account. But I can tell you that for the Podcast, the podcast is a full time job. And if I didn't take ads, there wouldn't be a podcast. That's not just lip service to make you feel better about there being ads in the podcast, I have a life and I have bills. And this takes up a lot of time. And yeah, no,

Sophia Livolsi 46:21
that's a fair point to Yeah, yeah, it's

Scott Benner 46:23
I think people now I can't believe I'm gonna say nowadays, because I don't like the phrase at all. But I think in the, in the space we're in right now, people online, understand that. And like, I've seen my, like, my kids get that, they get that they're get that they're watching something, somebody made it, and you know, what an ad is gonna pop up in the middle of it. And that's the price I pay if I want to watch this. Whereas I think as recently as 10 years ago, and definitely a little farther back, taking an ad on diabetes blog, would have been death, like people would have shunned you for that. And, and it just it and I think it was just as the infancy of the internet grows, people's understanding of what it takes to create the internet grows to and and I think those things kind of go hand in hand. But how would you make a business out of it? Like, like, would you? I mean, what's your goal? Like? I think the podcast works, because my main goal is to help people. Yeah, definitely. I don't know another way to start. But is there a good way? You started a good way? No, but there must be other ways to still do good things for people. I just, they didn't occur to me. That were workshopping your idea?

Sophia Livolsi 47:39
Oh, my gosh. I mean, I don't know cuz definitely helping people is a big goal for me. And then, like, Another side note, personal goal is I want to enjoy what I do. You know, and I definitely enjoy being involved in the diabetes realm. But I don't know. I mean, I've thought about maybe going to work for like, maybe an organization or a company that makes certain things there's definitely some organizations and companies that I would not work for, like, there's a select few, or I don't know, I'm still trying to figure it out. I have like a year and a half. So hopefully, I can figure it out for them. Well, that's

Scott Benner 48:18
cool. Yes, you can take this this, like blended degree that you're getting, and work in marketing for, like a small org, all the way up to a company that's, you know, selling glucagon to people and that you might be able to find value in that. I know, my wife's worked for a number of different companies along the way. And when she worked for one who made diabetes stuff, she said it was it felt more fulfilling to her. Then when like, and it was just random, that she ended up somewhere where people made diabetes stuff. But you know, she's like, you know, it feels a little more important when you go to work and you know, it's helping Arden and people like her. And you know, so I think there's a lot to that and I can't agree with you more like about wanting to go to work and feeling passionate about it. That is that's definitely a should be everybody's goal if they can if they can make it happen. Yes. Agreed. So you're gonna stay in the Texas area or do you think you'll move around the country?

Sophia Livolsi 49:15
Um, that's a great question. I feel like I would probably only live in Arizona or Texas unless like something crazy happened like if I did get like an amazing job offer knows exactly what I want to do but I don't know he's it's crazy man. Like thinking about all these things. Now that I'm kind of getting towards the end of college. I'm like, Man, I got to start thinking about these things. But it's exciting, but I'm a pretty fluid person. I mean, I change insulin methods. I moved my couch around so who knows what'll happen.

Scott Benner 49:50
When when you started college, obviously Coronavirus. COVID didn't exist in your mind or anyone's mind it existed. We just didn't think About a different COVID. But now that it's here, does it? How much of that decision making? Do you feel flavored with this new reality? Is it part of all your decisions?

Sophia Livolsi 50:18
Or not? I mean, it's, it's somewhat part of them. But I'm a very look on the bright side person. And I'm like, maybe by the time I graduate, COVID will be gone. But I know, I know, the world will never be the same. But it's like a small portion of my decision making. But

Scott Benner 50:32
no, that's fair. I just was very interested because of your age, like, specifically, because you're not, you know, you're not your parents who are worried about you, you're, you're, you're literally thinking about yourself, which is, is valuable. And, you know, obviously, is the way it should be. I'm not saying you're just like, focused on you, I'm saying that you're the part of your life where you're thinking about, you know, what am I going to do for a living? And will it be something that I enjoy, and, and all that stuff? And I was just wondering how much of it was like, Well, I would move but I don't want to move during this, or but it's, I like that. It's, it's gonna sound strange, but I like that it's not a big part of your thought process. Because I think you have to live like it is going to be taken care of by a vaccine, hopefully. And, and if not, then you can adjust down the road, but it would feel Doom and gloomy to plan like, I have to stay here because I'm scared the hearing you mean by that? If that makes sense?

Sophia Livolsi 51:28
Yes, I do. I do. Yeah, I'd Yeah, I would not want to have that mindset, like i Yes, obviously, we need to consider it but I agree with, I want to make plans and like, live my life, hopefully, plan to live my life as if everything's gonna be okay. But we shall see. Yeah,

Scott Benner 51:47
I'm super interested, like, I'm enjoying talking to you. Because you're at a, you're at a crossroads like position of your life. But I'm sure you think of one way and I see a different way. But like, talking to you, I could make the point that by the way, you structure your thoughts and the way you communicate, I could say you sound like you're 30 years old. Well, we but when I hear the the actual thoughts you come across as your exact age. And so it's so it's interesting to have people on your age, because, you know, because sometimes people can not know what they think. And it's it becomes, it becomes obvious when you ask them a question. Now the difference between not knowing the answer, because you haven't considered it yet. And not being able to kind of like, fantasize about it and think it through are two different things. You're you're like, I'm not sure but and then you explain your thought process, which has been really interesting for me. So I appreciate it. I have interviewed a couple of younger people over the times where you're like, yes, no question like, I don't know. And then nothing else happens. You're like, what did you not understand? You're part of this when you decided to do this? Oh, my God, I need to have an answer. You know, but but I'm really liking it. It's it's interesting to talk to somebody who's in your position in life, but not have but hasn't been an adult for 10 years yet. I don't know if that's making sense or not.

Sophia Livolsi 53:12
But no, that doesn't make sense. Yeah, it doesn't.

Scott Benner 53:15
It's very, very interesting. What about your health moving forward? You think ever about the fact that you'll age out of your parent's insurance one day? Is that something you have to consider? Because I feel like it's really in the future still.

Sophia Livolsi 53:31
I mean, I mean, it's like four years from now. But that is something that I definitely definitely think about. And one thing that also happened last year with like, moving out and COVID, and then just having a lot of life changes. I did have like, probably a couple weeks to a month of where I was just feeling anxious, like anxious beyond belief. And I was thinking about everything that could go wrong in my life, and like worrying for like a little period there. And thank goodness, I'm over it now. But just dealing with all those changes in my life was stressful. And so one big thing that I was worried about was oh my gosh, what am I gonna do? What if I graduate college and COVID still happening? And I can't get a job, and then I can't have insurance. And then I die. Like, obviously that's not rational things that goes through a 21 year olds mind. Yeah,

Scott Benner 54:25
I like how you kill yourself. In your theory. You're like,

Sophia Livolsi 54:28
no, like, no spray their darkness. I know. But no, like, I'm very blessed. My parents have great insurance. Um, but yeah, one thing that I do, I have been realizing lately is and like, I've also like, had a couple conversations with other people about this. And that's kind of why I've been thinking about it lately. As a diabetic, you do really have to kind of worry about other things in a career path than other people. If you will, like one big thing for me Wherever I get a job, it needs to have good insurance, it needs to have the things that I need. So I can like have good management. And so that's just another interesting piece of thinking about a future as am I going to be okay? In that regard, right?

Scott Benner 55:12
It does not lend itself to the idea of like, I'm going to take a year off and work on a ski slope and make a couple of bucks in ski all day. And you really do have to think like, once I'm off someone else's, like, obviously, if you're lucky enough to be on someone's insurance, first of all, that you're gonna be off of it at one point. And that, and then that's it. Like, it's, you know, there's, there's no grace period between when you need insulin next, you know, it's just doesn't exist like that. Now, people, how do you how do you find online? What's my question? Do you use? Do you only interact with people who are mostly your age? Are there is there a wide like, grouping? Because that's the one thing I find interesting about the podcast is that it's not like, it's probably more 23. Like, I find that like, the very responsible 23 year olds listen through, like the late 30s people is that is the sweet spot for where most people are listeners, but there are still people listening who are teenagers, not as many, but over 40 and 50, and even 60. Like, I, it's, it's weird to think that you're trying to talk in a way that, you know, generations of people can, can hear and be interested by. But do you feel like you're just talking to people your age, on Instagram and through the blog?

Sophia Livolsi 56:37
So I would have to say no, okay. Um, I mean, I feel like, maybe majority is probably like in their 20s. But at the same time, like, for example, yesterday, I was talking to someone who was like a parent, and they're a type one diabetic. And then I was also talking to a little boy that I'm connected with who's like, 14.

Scott Benner 57:00
Yeah, that's interesting. i That's my finding, too. And I was just wondering if Instagram limited you, because of like, algorithms, actually, like, I was wondering if it was pushing you towards, like certain age people?

Sophia Livolsi 57:12
No, that is a good point. I mean, I'm sure it does that somewhat. But a big goal for me is definitely to actually connect with people that I meet on there. Yeah. And so I do try and make a big point of that as well.

Scott Benner 57:25
Yeah, it gets overwhelming at some point. It's, um, I still answer every one of my emails, but I'm down to having to create like, I do an email day, every month. Wow, I sit down, and I answer emails for like, five hours sometimes. Oh, my gosh, just like, it's, I really do think it's important. And I really, genuinely actually want to answer the emails. But I just I don't know, I felt I feel like at one point, I noticed, when I was, you know, first doing this, there were people who had some popularity, and you'd get these, like, bounce back emails that were like, Hey, I'm sorry, we answer as many emails as we can, but blah, blah. And I was like, oh, like, I don't ever want anybody to get that. Yeah, you don't even like the I value your opinion. But I'm much too busy to answer you. Like, I just don't want that. Like, I don't ever want that vibe to be associated with me. I'm trying, I really am trying my best I, I struggle more. Like I have to admit, I don't quite understand why people like Instagram. Like, I know they do. And I'm not saying they shouldn't. I'm just saying like when people are having conversations and Instagram comments that I've aged through that, like, I'm like, This is not where people should be typing to each other. I know, that's not right. But, you know, I'm older than you are. And there's part of me that thinks that, you know, even like Facebook, it just doesn't allow enough enough conversation where people can really understand each other, you know, and I know from my own personal interactions. So via that, that, as much as I might look like my I'm out there in the world, that's still just a small slice of who I am. Like, I think if you met the entire me, I'm not the guy on the podcast. I am. But I'm not just the guy on the podcast, I guess. And then you get kind of like, it's scary to think that people could just see you as one thing. But you sort of have to just give it away. You sort of have to be like, Okay, I guess this is how I come off to people and I guess that's who I am to them. Do you ever think about that idea of like, what what its gonna be like, what it's like when you're on Instagram that you're you really are opening yourself up to people's interpretations. Hmm. So you're in a different generation, you probably don't give a shit about that.

Sophia Livolsi 59:44
I mean, I have always been the type of person to not really care if you will. Like I remember being younger and I got my first phone and I like my mom. Finally let me go to Facebook and I just was taking like the ugliest pictures of myself on purpose because I thought it was funny actually. Seeing them and my mom was like, why? Literally why? And I was like, I don't know. So I've always had that personality, that's kind of just, I let things roll off my back. And I don't mind being myself. I mean, it can be kind of scary, though, when it gets to the level of okay, there are there are a lot of people looking at your stuff. But I don't know. I mean, yeah, like, obviously, I share a lot on there. But I agree, like, unless someone meets you, they're not going to really fully know who you are. But in that, I mean, I just understand that I hope other people understand that. And then I just continue to be myself on there and share the things that I think are beneficial to that page and hope for the best. Yeah,

Scott Benner 1:00:39
I do my best to, to really, if I get feedback, that's not positive, I really do my best to look at it and think, Is there something in here that i i Maybe I should like, maybe I'm even if I don't feel that way of life, am I coming across a certain way? Or? Or do I am I really like that I don't recognize it. It's, um, I think it's easy for people to critique from the outside, but they're not. They, they think differently, if they had recorded 500 hours of content and put it out there for people to listen to, you'd recognize all of a sudden that you're not always at your best that you're not, you know, it's a, I'm saying that I'm not trying to say, you know, pity me, or you, or people who put content up, but there's more to it than would meet the I, I guess, more impact on your side of it. So if I think it's genuinely generous of people who are willing to take that risk to share with somebody, Hey, I really think you should Pre-Bolus You know, and who doesn't, at the end of it, say, and for just $75 a month, you can join my group that will teach you how to Pre-Bolus on your own, like, you know, like, you know, that kind of thing, like, if you're doing it as a business. It's, it's, it's a business, you know, and I couldn't also I couldn't argue that the podcast is a business because it makes it makes ad revenue. But I just I really wish people knew me like as as personally as they could to know that. I just don't, I don't do things for those reasons. So if if this stopped being valuable to people, even if it was still making ads, I would just, I would start I wouldn't have the heart to keep doing it. So I don't know. I don't know what I would do next. But I definitely couldn't just turn this out to get paid. And I don't know You seem like a really decent person. That's why I was like, I wanted to have you on I liked what you got what you do, and, and it just seemed like it would be nice to shine a light on you a little bit. So please don't like please don't put a plan on your, your, your blog next week after this. This comes out and you're like, hey, for just $50 a month.

Sophia Livolsi 1:02:49
One, Bobby, that would be hilarious.

Scott Benner 1:02:51
Maybe I would laugh. Maybe I'd be like, she played me pretty good. But I'm starting group. Yeah, right after you put my episode up. I'll tell you that part of my part of my job has become to weed out the people who just want to sell something. It's I'd love to be in your pockets. And I actually have to like dig through and do my best to infer from a distance, what their intention is. And so it's it's not always easy to do. And it's time consuming sometimes, too. And it's definitely not something I want to be involved in. But it just occurred to me a couple of years ago that once the podcast hit a certain point that people were like, I want to come on because I really care about people diabetes, and then they come on and the first thing they were like, well, I have this thing and I'm like, Oh God, like, I didn't recognize that that would happen either. I was not prepared for that. Honestly. Wow. I

Sophia Livolsi 1:03:44
never really thought about that. But yeah, you you would have to be on the lookout for stuff like that. I didn't really think about that.

Scott Benner 1:03:50
Yeah, I have a lot of weird jobs. I have the Be on the lookout for people trying to use the podcast to reach people so they can sell something job. I have the figure out who a Facebook scammer is to try to keep the Facebook group clean. Like, I never thought that would be a skill. Like I can almost look at a Facebook thing now and I go that's not a real person.

Sophia Livolsi 1:04:09
Skill right there.

Scott Benner 1:04:10
I before did not have that skill. But if you look at enough of those, like, of the fake accounts, they follow, like and then every once in a while I'll just I've made a mistake. Like last week, I just said no to somebody and I got an immediate email and the guy's like, hey, my kid was just diagnosed with type one diabetes. And I got rejected from the Facebook page. And I said, I just I emailed him back, I said your Facebook page looks like a bot account like you have them. Like, you didn't look like a person. And I like I'm really sorry, I'll let you and like just by the fact that they emailed me I was like, alright, well obviously this is a real person, but you know, you can't you it's weird and the algorithm kicks them back at me from Facebook. It's like it basically says look at this one. Look at this one. Look at this one. Because the algorithm thinks it's not a real person. Anyway, that's not something I thought I'd ever be involved in Sofia It's one that I take no joy from, at all. Tell me, tell me if we didn't talk about anything that you wish we would have?

Sophia Livolsi 1:05:11
Um, I don't I mean, I don't think so. I think I mean, I don't know, trying to think about anything else, like, I work part time, which I feel like isn't that interesting? We touched on pageants we, yeah, we touched on the blog and everything. So

Scott Benner 1:05:28
So you really are like, by virtue of you being here and recording, you must assume that I looked at you. And I thought, this is a real person who wants to say real things. And you really came through like, in that I really got the vibe as we were talking that you weren't just like, Please tell people about my blog, please. And and so you come across well online to me. So I hope that's meaningful to you. I also hope that you're not sitting there quietly gone. Wow, this guy, I just want people to listen to my blog, and I can't believe I can't believe you. Oh, no, I

Sophia Livolsi 1:06:02
know you're not coming from you

Scott Benner 1:06:04
know, seriously, like you. I got the sounds odd. But like I said, yes to you in a week where I probably said no to five other people. Like you were the only one that rang true to me of that grouping that came in at that time. And I could be wrong, like I could, you know, I'm saying but I really felt like I wasn't like, I felt like here's a person who's genuinely trying to share some of her life with type one diabetes with people. And, and I thought it would be nice to, you know, let you come on and talk about it. And then you came on and you really did not have an agenda, which then leads to conversation. I don't know what the hell we talked about, but I still really liked it. So

Sophia Livolsi 1:06:45
well, thank you. That means a lot. I appreciate you having me on here.

Scott Benner 1:06:48
No, no, it's my pleasure. It really is. Huge thanks to Sofia for coming on the show and sharing her story. Don't forget to check her out on Instagram. Her instagram name is what the crick it's what does that prick? You know I prep right? Everybody knows a prick. What the prick on Instagram. I also want to thank everybody who's bought me a cup of coffee this year at buy me a coffee.com forward slash Juicebox Podcast and a special shout out to the members who buy a coffee automatically every month you guys rock. Thank you so much. Check out the private Facebook page Juicebox Podcast type one diabetes. Don't forget to fill out that survey at the T one D exchange T one D exchange.org forward slash juicebox. I got a lot stuck in here. I'm feeling pretty good about myself. Talk to you soon. I'll be back really soon actually with another episode of The Juicebox Podcast.