#728 Toni Doesn't Listen

Toni is the mother of a child with type 1 and she doesnt listen to the podcast.

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

Scott Benner 0:00
Hello friends and welcome to episode 728 of the Juicebox Podcast.

Today I'll be speaking with Tony, who is not a listener of the podcast, but is a member of the private Facebook group for the podcast, and she is the mother of a young child with type one diabetes. While you're listening today, 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 healthcare plan or becoming bold with insulin. If you're a US resident who has type one diabetes, or is the caregiver of someone with type one, please go to T one D exchange.org. Forward slash juice box join the registry, fill out the survey help people with type one diabetes, the whole thing takes fewer than 10 minutes. You can do it. T one D exchange.org. Forward slash juice box. There is an unprecedented amount of time here. Before the music ends. I don't know what to do. Hey, find the diabetes pro tip episodes at diabetes pro tip.com juicebox podcast.com. Or they begin in Episode 210. In your podcast player.

This show is sponsored today by the glucagon that my daughter carries. G voc hypo Penn. Find out more at G voc glucagon.com. Forward slash juicebox. And today's episode is also sponsored by us med. Go to us med.com forward slash juice box or call 888-721-1514 To get your free, free free to get your free benefits. Check us med is a distributor of diabetes supplies. It's where we get Ardens Dexcom and on the pod supplies from there fantastic. Go find out more US med.com forward slash juice box for me. You are clear and loud. Okay, and not noisy? Okay. Are you under 35 years old?

Toni 2:29
Yes. I actually had this debate with my husband yesterday, I thought I was 36. And he kindly informed me that I was 35.

Scott Benner 2:37
Kidding, by the way I am recording now. There's a okay, that stays in. Because? Because Tony, that happens to me. I mean, it's probably happened to me three or four times in my life. I spent an entire year believing I'm an age that I'm not.

Toni 2:53
Yeah, yeah. That happened. Like that's just part of aging. I was trying to explain it to my son and he was like, how do you not know how old you are? Mommy? I was like, um, because you? Yeah, exactly.

Scott Benner 3:06
The horrible stress and strain you're putting on my body and mind. Loving you is killing me. That's why. Yeah, exactly. Exactly. So how far into the year did you make it thinking you were 36?

Toni 3:20
Um, well, my birthday was in October. So I thought I turn 36 in October. Yeah.

Scott Benner 3:27
Is it possible that all last year, you believed you were 35 when you were 34?

Toni 3:31
Yeah, I think so. Excellent. I guess it's better than the alternative and thinking the other way around thinking I'm younger than I actually am.

Scott Benner 3:41
So I found it to be invigorating. It was like someone gave me here. Because like, Oh, you don't mean like that? Yeah. You know, you know, when people argue about like the the daylight savings time. And some people were like, the clock moves, and I'm not right for like three months and like, what the hell like just, it's just an hour. You don't I mean,

Toni 4:05
like, I know, good. Sunshine does make a difference. I mean, I like waking up when the sun is out. But you know,

Scott Benner 4:11
yeah, I hear you. i But you know what I'm saying? Like, it's not the biggest adjustment in the world. No, it's not. But but then when it happens again, you know, and all of a sudden, it's laid out till 830 at night and you're just like, oh my god, the world's my oyster. Like, that's how I felt when I learned that I was actually a year younger than I thought I was like, I know, I didn't actually receive a year of living, but it felt like it and I took it

Toni 4:37
was like, yeah, all these small wins. I'll take them.

Scott Benner 4:41
Yeah, exactly. Exactly. So you know what? Now we've been talking for three minutes, so why don't you just introduce yourself real quick, so we can keep going?

Toni 4:51
Yeah, um, I'm not sure how you. You have me on the podcast because I don't really listen to the podcast, but I'm involved on the Facebook page. So How might one introduce themselves on your podcast?

Scott Benner 5:03
I mean, I feel like you've almost done it. Okay, so are you Yeah,

Toni 5:08
my name is is Tony. Yeah, my name is Tony. I'm the mother of a five year old type one who was diagnosed when she was four in the middle of a pandemic.

Scott Benner 5:20
Cool. Yeah. So, okay, so you responded to the, the beacon. I want to talk to somebody who uses this Facebook page, but does not listen to the podcast. Is that correct?

Toni 5:33
I did. Yeah. And I'll admit that, yeah, I had listened to an episode or two, here or there. And then, you know, What, did I filled out the survey? Like, in the summer? Was it?

Scott Benner 5:47
Yeah. So people fill out like a small intake form, like so I can. I mean, if people have been listening for a very long time, you'll know that I used to have, like, guests would pop on. And I'd be like, Hey, Tony, why are you here? Because I would not remember. And it was and it was not written down anywhere. And we knew we'd have these conversations. So then I added to the intake form, like some simple questions, which I have in front of me, right? It says, let's see, your what's your relationship to type one diabetes, and basically people say I have it or I'm the parent, usually a doctor, like that kind of stuff. It asks if you've been on another podcast related to diabetes in the last six months, you said no. And it says, what are some of the themes you hope to cover on your episode? And you said advocacy in the divorce? Wait, that's not Yeah, that was yesterday. No, that's not. Hold on. Next day. Here we go. I'm sorry. I record this podcast every day. I just clicked on the wrong thing. You're a parent you have been is what are the themes you hope to cover? You said? No idea. I'm scheduling this nine months into diagnosis and won't be recording for 16 months into diagnosis. Who knows what stage I'll be in then? That's yeah, I love that.

Toni 7:01
And I'll admit that like, I went and listened to a couple episodes. So I just didn't sound like a complete bonehead when I was talking to you.

Scott Benner 7:11
That's fine. I meant. So I guess it's just kind of set up the conversation. Yeah. 2006, my daughter's diagnosed, she's two years old. 2007 I began to write a blog about my experiences being a stay at home parent to a kid with type one, right? Seems kind of like and whatever now. But back in 2007, blogs weren't a thing. And in fact, there was a stretch of time where I believed I had the only diabetes blog in the world. It was that kind of hard to find things on the internet still. Right? Right. Turns out I might have been like the third or fourth person to write one. I've never looked into it that closely. But it was very early on is the point. Did it for years and years had millions of clicks. People seem to really enjoy the podcast. It helped all kinds of people. I would get notes, handful of notes a month, this pot. I keep saying podcast, this blog, blog really helpful for me, blah, blah, blah. 2013 comes around, I write a book about being a stay at home dad, at some point during the media for that book puts me on the Katie Couric show. After the taping of the show, Katie Couric pulls me aside to tell me I'm very good at talking to people. This is very short part of that I'm shortening this way up for you. A year or so later, I start recognizing that blogging is kind of dying. My numbers are dropping, I thought, oh, maybe it's me. I run my course. I talked to a bunch of people that I know who also wrote online, they were all experiencing the same thing. I thought, ooh, people aren't reading anymore. They just want to see pictures of Leonardo DiCaprio in his bathing suit on a boat. You know what I mean? Everybody? Yeah, everybody's clicking and flicking now. Nobody's reading. Yeah. And you pivoted, I got really sad. I thought I was gonna lose this thing that I, I felt was helping people. And then I thought, well, Katie Couric said, I was good at talking to people. And I started a podcast. So then the podcast kind of build slowly. This is actually your recording for the eighth season of it. And for clarity, like when people are like, I have a podcast that has 19 seasons, they have like 10 episodes, and I do for a week like so. I make a couple of 100 episodes a year. And anyway, I'm making the podcasts the podcast starts to really, really grow. Like no lie this morning. It's 10am. You and I are talking. The amount of downloads that the podcast has just today is five and a half times greater than the first month the podcast existed. Wow. And so it builds into this thing. And people come along to me and say, Can you please start a private Facebook group for the podcast people who listen to the podcast should have a place to go speak. And I swear to you, Tony, I know I'm doing a lot of talking in the beginning, but we'll get to you. I swear to you in the beginning, I was like, Oh, I do not want this. I don't want to be involved. I don't want to be responsible Facebook, you like I had all those feelings. And I'm like, alright, well if they want it like so then I set up these simple rules that basically I think one of the rules for the Facebook page is still basically says, like, Listen, I don't want to be doing this. If you if this becomes a pain in my ass, I'll just delete the whole thing. Like it really. It's like it was that? Yeah, yeah,

Toni 10:35
I've seen that too. Yeah, and

Scott Benner 10:36
because I meant it. And, and now as you and I are talking, I believe that Facebook page has probably 20,000 members in it. And it became its own thing, sort of separate of the podcast, and wasn't right away, that I didn't notice it right away, I should say. But one day, I started realizing that there were people who kind of like existed in this eco sphere on Facebook, that not only don't listen to the podcast, some of them were unaware that it existed. Oh, wow. And that freaked me out. And that made me. So that's why you're here. Awesome. So tell me how you found it.

Toni 11:19
Um, when Evelyn was my daughter's name is Evelyn when Evelyn was diagnosed. You know, it's kind of figure out your endocrinologist recommended that we find groups and recommended Facebook forums and recommended your podcast as well. So we kind of got all of these resources at once. And I think the reason that she just laid out all these digital resources was because we were in the middle of the pandemic. So she runs a lot of JDRF local events and community things, but she said everything was shut down, it's been shut down, it's gonna continue to be shut down, I can't help you with what I provide for the community. So let me give you all of those resources that are out there. And I found it very interesting that she didn't recommend any books. There's plenty of books that I have on my nightstand that I'm trying to work through, but I'm tired. So I start reading and I fall asleep, for stress out from blood sugars. But I thought it was really interesting that she went straight to like, Facebook and all the digital things. Particularly since I'm not very active on Facebook. And I don't, that's pretty much what I use it for exclusively, if I sign on to Facebook is to check or search some of the diabetes pages.

Scott Benner 12:33
It's exclusively what I use Facebook for to so I usually I usually joke like I'm 50 and a boy, I don't really, like want to be on Facebook. In that sense, having said that, the interactions that I have with these people, I find my Facebook page to be the most and Facebook, like Facebook experience that I've ever seen. Because it Wow. Okay, so a number of different reasons. So specific to diabetes. People love to argue, you know, like, I mean, it's not even just about diabetes, it's everything. Like everybody wants to be on a team, right? It could be politics, it could be the way you eat. It could be, you know, is breastfeeding good or not. Somebody used the example the other day, I said, I think I made a post and I said, you know, I'm hoping one day to see a post where somebody finds a way to mix the topics of COVID vaccines and low carb eating in the same argument. You know, like joking around that. These are the things that I see people kind of like brusque about or they have very strong opinions or whatever. But usually on Facebook, it blows up into this just Bloodsport, right where people are just saying the worst things to each other.

Toni 13:54
Without getting too political, like that's what they're aiming for. Right?

Scott Benner 13:57
It's the goal right? Like your, your your, the way I see it is there are people who are upset and wanting to foist their opinions. And there are people who think their opinions are beyond reproach, and are just dying to be picked have not picked on. I think they want somebody to come at them so they can go Oh, woe is me. This wrong person is saying they're wrong things to write me and I've been wounded like the enemy. Like I think everybody's got like weird, like psychological desires in this like they want to they want to fight in one way or another. Yeah, yeah. It's fairly common. And I'm not saying that it's not even just like a human attribute. It's nothing uncommon for sure. But when it if it should start up in other places, it turns into full on, like nuclear war. You don't I mean, at But in my facebook page it doesn't like even if even when those things kind of get stirred. Like some like level headed person will come along and say something to me like and they seem to work it out on their own.

Toni 15:13
Yeah, hold on one second my daughter is is knocking and this is one of the reasons why I cannot listen to the podcast. Evelyn. Evelyn come on in sweetie. Yeah. Hey, I'm on. I'm on a phone call. What

Unknown Speaker 15:29
do you need? And was wanting to know have you got? Yes, so I can. I am dressed. You can go get dressed. How old is she?

Toni 15:38
She's five now.

Scott Benner 15:39
She's dressed. She's dressed.

Toni 15:42
I'm dressed. So she didn't know just we're on Week Six of being quarantined from school. Oh my gosh. So I am at home for Week Six taking care of her while dad is at work.

Scott Benner 15:52
Oh, yeah. Have you pulled her out of certain spots in your head yet? Are you okay?

Toni 15:56
I'm not hair pulling lots of tears.

Scott Benner 15:59
Yeah, six weeks a long time. That's a really long

Toni 16:03
time. And my son was my son who's eight did first grade completely virtual of the year before. So to say that it's been a tough pandemic is an understatement. Are you in Canada? No, no, I'm in Baltimore, Maryland.

Scott Benner 16:17
Oh, okay. No kidding. I know that Arden is doing right this second what I call bed School, where you sit in bed with your laptop in front of you and see if you can see if you can sleep without anybody noticing.

Toni 16:31
Oh, wow. That's a that's an art form.

Scott Benner 16:36
We'll get back to that. But so I think the um, I think this space, probably because it an initially started with so many listeners of the show. They all had very similar ideas. And I think that's the seed that it grew from. So even now that it's larger, and it can sometimes fall into, you know, more Facebook like scenarios, they don't last very long. And I'm also I don't know how to put it. I'm not up for that crap.

Toni 17:08
So yeah, I appreciate when you interject and are just like, No, you're wrong, be quiet or be gone. And I really appreciate that. And that and that's why, you know, whenever I'm going to search something, I'll go to your Facebook page first before I go to the any, any of the other ones. Because I know that at least to some degree, it's going to like that is going to be cut out or going to be nipped in the bud. And so, you know, I find that that's really helpful as well, too, when I'm kind of looking for

support or information. You know, for whatever struggle we're going through at the moment.

Scott Benner 17:47
Yeah, no, I appreciate that. I think it's just probably I don't have I'm not concerned that everybody what do I want to say? I don't care if everybody likes me. Like yeah,

Toni 17:59
no, I totally get the sense of that. That you don't you don't mind? Yeah. But I think also like being a seasoned type one dad. Like you kind of get the separation from quote unquote normal people from like, okay, okay, hold on. Evelyn's back. And

Scott Benner 18:17
what did she What are we wearing?

Toni 18:20
We're wearing a tie dye long sleeve shirt. That's three sizes too big because it's a handy hammer down from the 12 year old neighbor across the street. And we are wearing turquoise Nike shorts on that has like workout built in underwear. So we don't actually have to wear underwear, which is something that we you know, don't like doing wearing underwear. And it is currently my temperature outside. 23 degrees outside. So we're

Unknown Speaker 18:52
here to Yeah, so

Toni 18:54
we're in like some workout shorts. And a long sleeve shirt.

Scott Benner 18:59
I just had a picture.

Toni 19:01
So it does look their sleeves. They're long. They're busy. I scratch. Oh, okay. It's a sweatshirt okay, because she paired a short sleeve shirt underneath her long sleeve shirt that now makes it a sweatshirt

Scott Benner 19:14
I understand. Reasonable concepts. You have any other kids?

Toni 19:19
I do. I have an eight year old son. So we've got Evelyn who's five and the nine year old. Hey sweetie, can you go downstairs and go? Tablet a little bit more out there?

Can you plug it in? The plug is right there. Can you go watch a show with Oh in in the basement then.

This is this is what it's like to be quarantined at home with children that are very young. And then diabetes is like an additional child to monitor and pay attention to right.

Scott Benner 19:55
So I appreciate you saying what you said because to me, it just it's All just common sense to me. Right? Like, yeah, yeah, we're not, we're not here to argue with each other. Everybody has experiences and perspectives, they can lend them to each other. We're not here to tell people that they do, they're doing something wrong, that they're using too much insulin that they eat the wrong way that if they were just the low carb, then they wouldn't die. Because you're gonna die if you don't eat low carbs, like you don't I mean, like, or write the the alternate response to that, which is I'll eat whatever I want. And I'm like, Yeah, I mean, you know, I like the sentiment, don't get me wrong. I think you can learn how to Bolus pretty much anything. And I think that having that skill is incredibly valuable when you go back into your life and eat the way you eat. But

Toni 20:40
we're trying to set up really healthy relationships with food, yes. And figuring out how to use the tools to make that happen. So we're not establishing eating disorders or, you know, feeling emotionally left out or disconnected from people who are or your peers who aren't diabetic.

Scott Benner 20:57
Yeah, no, and what I think what I think probably happens, generally speaking, it's not for everybody. But I think that there are people who, who have, who have either had diabetes for a long time and have found a really great way to manage it with a very low carb diet. And, and they were unable to figure it out otherwise, which makes sense, especially with without technology in the past. And then they see other people coming in. And those people are like, I'm trying to figure out how to Bolus for Lucky Charms. And I think it makes the lower carb people feel like Oh, my God, you're gonna kill yourself. Like, let me save you. I know the way you normally mean. Everybody gets very passionate about saving each other. And then they just somehow, you know, it turns into conflict. Because, you know, everyone sees a different sort of aspect of the argument and they start trying to pick it apart. And if that doesn't work on Facebook, you can't have nuanced arguments on Facebook, like it just No, it doesn't work. And you're

Toni 21:58
not going to change someone else's opinion on Facebook, either, especially if that person is a stranger.

Scott Benner 22:03
Well, Tony, you're not going to change anyone else's opinion ever at all. In any scenario, you don't. I

Toni 22:09
mean, maybe we can disagree on that. But it might not gonna try to change your opinion on that

Scott Benner 22:14
we can move on, but it may take some time. You know what I mean? And some more nuance and hearing each other's voices is a huge deal. Like, if I if I typed out what I just said, I get eviscerated online, but here, yeah, hearing it, you're like, oh, okay, I see what he's saying. Yeah, you know, like, and that's a big part of it. So when that starts happening, I step in, and I'm like, be nice. That's it. If you don't want to be nice, just leave I don't even kick people out. I'm like, Just go if you can't be nice, you know, I'm help these people and listen to their perspective about lower carb because I'm gonna tell you something. Fewer carbs means less insulin, less insulin means more stability. And it's easier. It's not to say it's undoable the other way. It's just to say that their perspective is not without merit, and either is yours. So, I don't know I've just my whole life, I've been able to kind of see multiple sides of arguments, and I don't get caught up in what I think is right or wrong. I think that might be because I don't even know what I think is right or wrong. I just comments. Just whatever works is right. In my opinion.

Toni 23:23
Yeah, yeah, exactly.

Scott Benner 23:29
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Toni 26:43
Yeah, yeah, I think so too. And and I think, you know, part of it is, is, you know, some of the pinch content is really good. The rules that you outline are really good as well. You know, oftentimes, when I'm on the other pages, what makes me not want to go to them or, you know, the continual? Does anybody have recommendations for some good zero carb snacks, my kid was just diagnosed and they're starving. I see that one every day, someone posts that every day, which I was there, I get it. And then and then I'll see the other side of it if like, my kid is in a diabetic coma. And as someone who has a five year old, who a four year old who was recently diagnosed, you're like, I don't want to, I don't, I'm not ready to read that. I'm ready to bury my head in the sand on diabetes complications and what the horrible outcomes could look like, and not that I'm not compassionate to their situation, but you're just not ready to digest any of that. So I try and avoid, you know, similar questions over and over again. And then like the grim, dark stuff that can happen,

Scott Benner 27:44
you know, what I think happens on on other Facebook groups and other content providers is that I shouldn't give my secret away here. But they're unwilling or unable to provide deeper thoughts. And, or, and they are, they don't want to maybe they know how your agency could be five and a half. But they're not willing to say it out loud. Or maybe they don't. And they're trying to hide the fact that they don't really know what they're doing either. But they want to have this space for this thing. And they're trying to get you in as a user or a member or whatever. But they think that you don't want to go deep.

Toni 28:22
I think what I was talking about my husband last night, specifically in regards to talking with you today, Scott, is that so many people are afraid to say specifics of like, I eat this meal and I bolused this way, and this is my carb ratio. You know, I'm thinking of the athlete, Mandy Marquette, who's a cyclist. And I spoke to her we share a sports agent. And when I spoke to her about her experience, she was like, I cannot legally show you my graph, I cannot show you what my line looks like, I can't tell you how I Bolus I cannot tell you what my prescriptions are. I'm not allowed to do that. And her sponsors will drop her. And I think so many people that are in the diabetes space, they're afraid they're gonna get in trouble. And I think you're the one that's the most bold to say, like, No, I crash and catch. That's what I do. And I will Bolus for adrenaline before Arden you know, has a competition in case she gets nervous. And if she doesn't, then I'll give her a juice box like these are these are the few episodes I've listened to. And that's what I really like about the Facebook page because it is an open source forum, right where no one's been held legally liable to share the information on how they do things. And that's why I go there and appreciate it and and it's beautiful to see when you're like okay, here's some pizza at a birthday party. I don't know how many carbs it is and I don't know how to Bolus for it. You read the comments and it is you know 50 different ways of bolusing for that pizza that works for many different people. Yeah. So it really is like a really nice, very specific open space for them to kind of see what other people are doing specifically. And that's what I really liked about it.

Scott Benner 30:13
It also, it as it's helping people come along, some of the people stay behind to help the next group. So one of the things that you users won't notice that I see. I used to put it like this, like, everybody, I only know people by their avatar pictures, and the avatar pictures that I see changed about every six months. The people, the people who are there don't recognize it. But I always like Michael, this person is so helpful right now, it'd be a shame when they're gone. But they will, but they will be. And then sometimes, some of them don't like some of them hang. But there's always enough people who have kind of been through the process, who want to stay behind and help the next people through the process, which breeds a group of people who want to stay behind. Like it's not the same 15 people it's, and because of that, I think the knowledge grows in a way that it wouldn't if it was just me there answering the questions over and over again, because I only have my answers. But the people who listen to the podcast, have my answers blended with their experience. And then the answers that they came up with, you know, so it just keeps, it just keeps expanding. Like if you think of, if you think of my knowledge is like the little like, oh god here, I'm gonna get my science wrong, but a little electron in the middle, right, and then they keep doubling and doubling and the and the sphere gets bigger and bigger and bigger. Like I struck the match, but everybody else is keeping the fire burning. And I think that's why it gets. Listen, I read some of those things. Sometimes I'm like, That's a good idea. Yeah, but to your point earlier, like you mentioned, crush it and catch it. And most people, I mean, might understand that if they're listening, but if it didn't make any sense to you, it became obvious to me at some point that my daughter's blood sugar was going to get high. And I wasn't going to be okay staring at it for six hours waiting for it to drift down gracefully. So I taught myself how to crush the blood sugar and stop it before it became a low and kind of come in for a smooth landing. Right now,

Toni 32:26
it always seems to smooth out when you correct the low in stead of waiting for that heidkamp. Like you know what I mean? I know. I don't understand the science behind that at all. But yeah, like over breakfast is awful for Evelyn over bolusing breakfast, and then getting her to school, the setting is what's awful. Getting her to school. And then if she needs that giving her that 10 gram of applesauce always gives her a smoother line than just bolting it all upfront and letting her to applesauce before we go to school.

Scott Benner 33:02
Yeah. And I think that because the podcast is a continuing conversation, it's obvious that I'm not saying that every day, your blood sugar is gonna go up to 250 or 300. And you're gonna give yourself a massive amount of insulin and then stop it before it becomes law. I'm not saying you're going to live like that. I'm saying that if that should happen. Here's how I handle it. Maybe you would think about that, too. And see, and what most people would say as well, I would never say out loud for people to give themselves more insulin than their doctor. Like, okay. I mean, you either understand that diabetes doesn't follow those rules, or you don't. And if you don't understand that, maybe you sit back a little bit, just listen for a while just watch people on the Facebook group until it starts to make more sense to you. Or maybe it's not for you, and you leave. And you know what, that's fine, too. I'm not trying to make anybody do anything. I'm just making the information available. And what you do with it after that is completely and utterly up to you. But right,

Toni 33:56
you're just sharing your experiences and what you do, and then people can do what they choose to do. Right. Beyond that. Right. And I think that that's, you know, there are some things that you do, or yeah, there are some things that I'm just not comfortable doing because everyone's five sure that maybe I'll do when she's older. And I recognize that too. Like how old is Arden?

Scott Benner 34:17
She's 17 right now.

Toni 34:19
17 Yeah, so 17 But she was to an early diagnosis, the technology was different, etc.

Scott Benner 34:25
Yeah, I just said while recording with somebody yesterday. It's a weird like, little like wish, but I kind of wish I could take care of a two year old for a little bit. I wonder how good I'd be at it now, like with a CGM and everything I know now, like I wonder if I'd be good at or if I'd be on that Facebook page going, Oh, my God, this is just like, I remember. It's terrible. You know, like, I know, I have no idea. What I do know is that because Arden was diagnosed so young, and we've lived through all the seasons of it, no technology, the advent of technology, figuring out what I know now, writing it out so that I could really understand it. it moving on to podcasting to talk about it, like I have affirmed, I think I'd be hard pressed for you to ask me a question about diabetes that I wouldn't at least have a reasonable answer to. Yeah. Right. And I think that I'm not the only one that knows that stuff. I might just be the only one who's willing to say it out loud, and knows how to make a podcast and is not completely boring to listen to. Yeah, I have a great mix of skills that lend itself to this specifically, which, by the way,

Toni 35:31
I'm thick skin, right, like in thick skin. And I think that matters a lot to if you're going to be in this space to say like, well, sorry, you don't like me goodbye.

Scott Benner 35:40
Yeah, well, there are. So I became, here's where I learned this. It's funny, it came up earlier, I wrote that book, it literally has nothing to do with diabetes, although if you have diabetes, or your kid has it, and you read the book, people think the whole books about diabetes, because there's like a chapter about it. But anyway, I write the book, it gets its first five professional reviews, They're glowing, I'm on cloud nine, my publisher says to me, just be ready, someone's not gonna like it. And at that point, I was like, This is crazy. The first five people that reviewed it loved it, I love it, everyone's gonna love it. And then the next person really, really didn't like it. And I read the review. And it felt like they were talking about me. And I had to learn how to think this guy doesn't hate me. He doesn't like what I wrote. He doesn't like how I write. Who cares? Like, that's fine. And that's the first time I was like, if I'm going to be a public person like this, I have to understand that I'm not going to be for everybody. Because when you try to be for everybody, you're kind of nothing. And you know what I mean? At least I'll be myself. And some people will like me, and some people won't. That'll have to be okay. The way that's translated to all this, is that very lovely. People send me notes. Sometimes they're like in this other Facebook group, they say that you're a insulin pusher. And I'm like, yeah, just pretend they don't exist in them. They don't exist. It's the internet. It doesn't matter what they say. You know what I mean? Like, I'm sitting in this room now recording with you, my wife could be in the next room right now on the phone with her friend going. Yeah, I don't know. Like, what am I gonna do? We've been married for so long. I can't leave that guy. I mean, he's an asshole. But what you like, I mean, she might hate my guts. But I don't know, I don't know that. And if no one ever tells me, I won't know. And so while that may be different in a personal relationship, because it'd be weird if my wife hated me, if some random lady in some random Facebook group is talking to eight people and telling them that, you know, crush it and catch it's bad, don't learn about it, or you don't want to Pre-Bolus because your kids too young or whatever, they whatever their set of beliefs are, that really has nothing to do with me. So I just, I don't know, it seems meaningless. What, what's meaningful to me? Is that the other day in, in a in a Facebook group. So this is pretty common. Facebook moderators, if you mentioned the podcast, will delete your, your comment. And on other on other diabetes, other diabetes pages, it's very common. They won't let anybody talk about this podcast, I think that it's but it is, and if you think about it, because if you started a Facebook group, right, and it had five 810 15,000 people in it, and all of a sudden, every time somebody asked a question, the answer to the question was you should leave this Facebook group and go somewhere else for your answer. Well, that might make you feel a little uncomfortable if you were the person running that Facebook group. Because if you think of those people as numbers, then you've gone to this work of attracting in your numbers, and then somebody else is coming in and taking them away. And the difference between that and me is I don't think of you all as numbers, I just think of the Facebook group is a place that helps people if someone asks a question, and their answer is, I think you'll find out what you need to know, in another Facebook group, I don't see that as you stealing a person for me, I see that as a person getting the help they want. So I don't feel like you're this, I don't feel like people are this commodity that I'm trying to hold on to. I feel like the podcast and the Facebook group are here for you to get whatever you need out of them. And if what you need is not the podcast or the Facebook group, then God bless like you don't I mean, like, go on and do your thing. Like I want you to be happy and healthy. And I don't want diabetes to be a burden to you, you know, as much as it can be. So I think that so then people delete the you know, or they'll they'll suspend you or tell you you can't mention that podcast or something. And if you found those people you would get any number of

you would get any number have explanations ranging from well, I can't let you go somewhere where I don't know what it is. Nobody's going to tell you the truth and say I don't want to lose my membership. I've, I've seen people lie about me. Like there is a woman who wants this people said, Hey, what helps you with diabetes? And this person came in and then said, The Juicebox Podcast us, they deleted her statement. She She messaged the moderator of this group and said, Hey, I don't understand like you asked, what helps? This is what helps me Why would you delete that. And then the moderator, who I've never met before, in my entire life, I couldn't pick their face out of a line up I've never seen their name before, wrote a long, complex, scathing description of me and claim to know me personally, and know that I was a bad person, and that I take money from people, if you go to his Facebook page, he'll just DM you and then get money from you. I've never done that my entire life. This person made up what I believe the Jewish people would call a Baba Meister about me. Pretend story, just to try to keep this one person in their Facebook group and make them not like me. It goes on constantly. And I don't care. You know, it's not true. I know who I am. And I'm okay with that. So, recently, when a pretty big Facebook group put up a statement saying, Look, we love the Juicebox Podcast, but you can't. You can't tell people to go there anymore. We will delete your comments if you do that. That person said it was because newly diagnosed people will get overwhelmed with complex information. And the podcast is confusing, and it's long and which none of this to me seems true. So I didn't say anything, a person sent it to me to say, Hey, did you know this was going on? I said, I did not know this was going on. But thank you. I don't care. It's meaningless to me. But I did go on to my Facebook group and said, Hey, if you are newly diagnosed, and either the parent of a child with type one or an adult, and this podcast or facebook group has been valuable to you, could you tell me how? And that if you go read the responses in that thread, and how the podcast or the Facebook group has helped people and how it's elevated their understanding and alleviated their stress, that's what I care about.

Toni 42:31
Yeah, yeah. And, you know, I think that I understand where that comment comes from? Because I definitely feel that and is one reason why I haven't listened to the podcast very much. I've kind of dipped my toes in episodes here there. Is, is I do find it is overwhelming, particularly for when you have a four year old, a five year old and you're dealing with diabetes during a pandemic. And I think it's overwhelming in a couple a couple of reasons. But one, like where do I start? And how can I know that I'm maximizing my time and getting the answer that I want when I'm listening to this 40 minute episode? And sometimes I don't, right? Thinking about one episode I listened to about fat, fat and protein and bolusing for fat and protein, and how you need to do that. And I agree. But then it didn't say when do you do? Pause 90 minutes later, do you post two and a half hours later? How do you know how much to Bolus for the fatter protein? How do you find that information? What what meals are you talking about specifically that work for you? To them Bolus, fat and protein, like specific examples. It was what I was looking for. And I didn't get that, right. So trying to like optimize my time trying to navigate how many episodes you have. And I know that there's that on the Facebook page. There's pictures that have specific lists of episodes and topics. But when you're scrolling through the app looking for the one you're looking for, like the format that they're laid out is not ideal. Yeah, that's not an apple podcast. Yeah, that's, that's not that. Yeah, that's another under your control. And then and then I do I do agree, particularly if your child like mine is still honeymooning. 18 months later. Like, for example, her nighttime Basal rate was point 05 for a week, because she was going to low every night, two or three times. And then I had to bump it up today to point two, because she just keeps doing this rise in the middle of the night. Now that like if I were to follow the way that you take care of art and some of the things that you say on your podcast to to try to do that. It would just be total chaos. So there is a little bit of of, you know, I'm still in say diabetes 102, right? I'm not in diabetes 101 anymore, but maybe diabetes one or two. And I really do find that your podcast is like diabetes 4.0 You know what I mean or a 401 and when When you're ready for that information, you know, I'm sure I will listen to your podcast through. And also when I have time, I'm not so tired when my kids are at school, but I do agree with that comment, particularly being a parent of a young one diagnosed during a pandemic and have talked to a couple other friends about it as well. And they have some similar similar thoughts on that. of just, it is a lot. Yeah. And we have to pick and choose what we're ready for. And that can be difficult to navigate when you have so many episodes

Scott Benner 45:33
how to present. Now, here's what I would say in everything you said is absolutely I think, right. But then what's the answer? And yeah, right. And the answer isn't, I can't tell you exactly when to Bolus for fat. I can't tell you, I can't know everybody's specific situation. So I think of it more as it's like a sci fi movie, where in the first 15 minutes, the guy picks up the shiny thing off the ground and puts it in his pocket. And it doesn't come in handy for two hours. You know, so would it be better if he walked past the shiny thing and left it there? And nobody told him that this might be important one day? Or would it be better if we stuck it in his pocket? So that three years from now, here you go, Oh, my God, I got this. I know what to do. Like, this is what these people were talking about. So there is no here to me is the is the crux of the issue. There is no perfect way to find every person and meet them where they are no way right away. And because of that, all I can do is just put everything in one place. And if it behooves you, you go find it. And if it doesn't, I understand completely. But pretending that this doesn't exist, I don't think is a viable option. And that's what most people do. That's what most doctors do. That's what most online content providers, do. They act like they treat you. I mean, you said it earlier, right? Like all the posts are the same over and over again. They're very baseline and simple. And so when that happens constantly as a, as an example, in a Facebook group, or even if it was on a podcast, it would become completely invaluable in five seconds, what am I going to do tune in every week to hear somebody talk about the same damn thing over and over again. And I might even sound angry about it. I'm not, but I lived through that blogging thing for so long. And I watched so many people just give this baseline information over and over again, they would never tell you the rest. And I saw the harm it creates for people because when you know, the first 18 months of your diagnosis turned into the first 10 years of your diagnosis. And now, you know, little Evelyn's running around with, you know, a nine a one C and you don't know what to do about it. And you've all given up and it's a show, you know, it's too late then. So the best I can tell you is that I know what I knew then. And I know what I know now. And if he took me back then and gave me a choice, I'd be one I would want to be told things that I might not understand over having things kept from me. Yeah. And that's just how I feel about it like so then, then the bigger picture is, is when the podcast starts to scope out. And it gets bigger and bigger and bigger. I mean, I think I told you at the beginning of the episode, right, how many downloads there were just today, I mean, I'm not gonna give you the real number because, you know, I'm modest a little bit. And it's a big number. But we've been recording for 45 minutes. And that number is 1300 bigger than it was when I told you what it was the last time. Yeah,

Toni 48:52
and I think that that's really, really great. And when I think about your, you know, analogy to having that sharp, shiny dagger in your pocket and picking up because you might need it later. You know, it really makes me think about hoarding. Unfortunately, you get to hoard, right, you get to be the one that has the storage unit that has all of the episodes that holds everything that then I can go and access when I need to. I don't need my house covered and things that I may potentially need. And I have my master's in experiential education and brain based learning. And so just even knowing the way that the brain works, and the brain learns that if you learn information that you're not ready to apply, you're not going to remember it. So you're not actually going to learn it, you're just going to listen to it. And I think that that's, you know, you ask the question of why are you not listening to the podcast, but you're involved on the Facebook page. That's part of it too, right? Like, if I listened to all the episodes and binge them all, if I'm not ready to learn that information. I'm not going to learn it. I'm not ready to apply it. I'm not going to apply it and then it's just wasted time. So that's the beauty of the Facebook page kind of being a different universe or running in parallel. The podcast is that you know, you can seek and find what you're looking for. And when you're ready, you can dive back into into the podcast. And that's just not, you know, for many reasons, her honeymoon in the pandemic, my kids home from school, you know, life just being overwhelming in general, the that, you know, maybe newer dials diagnosed parents or parents with T one kids in the pandemic aren't listening as much as we would like to just life is overwhelming.

Scott Benner 50:31
You know, it's it's so funny, because the podcast has never been more popular than it has been during COVID. So but I take your point, and I am not dismissing it at all. I think I think that what happens is, is that this is your experience. I would bet I'm willing to bet $50 or now American dollars, between you and I, that, that it might be a year from now. Or it might be two years from now. But I'm going to make an offer to you. And I bet you'll take me up on it. At some point. I'd like you to come back on the podcast after you've started to listen to it. Because I think yeah, I think you're going to,

Toni 51:12
oh, I know, I'm going to like I will put money down on that bit too. I just need my kids in school.

Scott Benner 51:18
And but in the meantime, I guess you're we're agreeing here. We're a little group of people agreeing with each other. But in the meantime, the Facebook page has provided enough for you to get by. Is that right?

Toni 51:30
Oh, yeah, no, if I'm, if I'm struggling with something that can go on there, like for example, you know, my daughter was rising a lot. As soon as she got to school because she was sitting down and I was like, I'm increasing her carb ratio, I'm increasing her Basal, she's still going up, and then having a slow rise, I don't understand I don't get it. And then I went to the Facebook page, and someone had mentioned something on some post somewhere about increasing their Basal for like 90 minutes before they wake up, because it's just gonna give them that little extra edge when you Bolus them for breakfast, and that fixed it, right like doing and I don't do it when she's not at school, because she's running around, but knowing Oh, she's going to school, increase that Basal for 90 minutes before I wake her up. And she doesn't have that same slow rise all morning when she's sitting at her desk, you know, and that was the answer that I was looking for. And I don't know if I'd be able to find that listening through the podcast, no matter how long it would take to find that answer. listening to the podcast? Well,

Scott Benner 52:32
I've tried. First of all, I think that that is a great example of something that seven out of 10 doctors would not tell you and probably wouldn't know to tell you to begin with. So it's not information you're gonna get there. And so when some of these other Facebook groups, like you have to ask your doctor, I'm like, don't you understand, they ask their doctor, and they're still in this situation. Now it's time to help them. And if you don't know how to help them, once you get out of the way and let somebody who does know how to help them help them instead of just being instead of having that greedy feeling of like, well, I can't help them, but at least they're a member of my group. And my numbers are bigger. And like, you know, to me, like who cares? Like, what Facebook group is? It's a Facebook group. It's not like you make money off of it. It's, you know what I mean? It's not like they're even holding you to, like, make a living like it's a Facebook group. And that's the other thing too, is that I've put everything I know into this. And it's not behind a paywall. Like there are plenty of people who pay wall information like this, that's not nearly as complete as this. And I think that part of the reason why there is such a depth of understanding within the Facebook group or a depth of information within the podcast, is because to me, it is an open source project. Like like, you know, it's I, I don't have the I don't know what it is. But I don't have it to charge you to listen to the podcast, like whatever it is like the I've said it before, there are companies who have come to me and said, you can monetize this. What if you just charged 99 cents for a download? How many downloads Do you have? And like Tony, any second now the show is going to hit 5 million total downloads. That's amazing. Right? So cool. I think that in this year in 2022, I believe it's going to add three and a half million more. Yeah, so it is it can be difficult to step back and go What if it was just 50 cents a download? Like people would pay 50 cents? Could I make $4 million? Like you don't I mean, like, and then I just think what if that stops somebody? What if? What if that stops? Tony from listening to the podcast ever? I lose what on you? Like if I charge you $1 An episode? There's 600 episodes. Let's say I lose $600 If you leave in this scenario, but what do you lose? Yeah, and I can't live with that. Like, like, you know what I mean? Like, I don't want to think that I knew something that you needed to know. And for the love of $600 I was like no Screw you. You can't? Like, I don't have that in me. I, I just don't. So Well, I'm

Toni 55:06
glad you don't have that in you. And I think a lot of people are glad that you don't know that in you,

Scott Benner 55:10
I would imagine. But it's but it's when other people pay well, their information. They also don't have any incentive to grow it like, right, because I'm not trying to just create a thing that you won't be able to argue wasn't worth the money I charged you. I'm trying to create a thing that keeps growing like I mentioned earlier, I want it to keep expanding with knowledge and ideas, because people are going to start using algorithms more, you know, more frequently, people are going to start using CGM more frequently, there's no end to how we can grow this knowledge. And maybe the best thing I can imagine is that when I'm 70 years old, that some kids going to be born, get type one diabetes, and the entire course of their management life is going to be different, because somebody who listened to this podcast is going to be an endocrinologist. 20 years from now. You mean like that to me? Like, that's so cool. Like that's, I mean, money's not worth that, you know. And the other thing is, too, is like, I take ads, like, I make money. It's not like, I'm not over here, like, like, I'm not wondering what I'm going to have for lunch when this is over. You know what I mean? Like, I'm okay.

Toni 56:20
I also wonder if legally, because you're not charging, that gives you more freedom to things that people can disagree

Scott Benner 56:28
with? Yeah, I've never considered that. But yeah, versus

Toni 56:31
having people pay for knowledge. And then that knowledge being them not using it

Scott Benner 56:36
correctly, or something like that. Well, I mean, listen, that is part like, I just got a note the other day, can I hire you to help me with my kid? And I was like, No, but I mean, I'll try to help you if I can, you know what I mean? Like, I can't, if I can't, I can't. But I'll give you the, you know, whatever comes into my head, whatever the best thing is I can think of, but I can't ask you for money. I'm not a doctor. You know, like, that's all anyway, that all just seems like common sense to me. You know, and you need. I don't know, like, at this point, maybe I'm so far ahead that people look at it and go, I can't catch him. And so maybe they're not going to try. But I think that this all only exists for very long term reasons, meaning you can't rush something like this into existence, right? Like, you know, the defining diabetes episodes.

Toni 57:30
Okay, so those are exclusively the ones I've listened to.

Scott Benner 57:33
And they're perfect for you, right. And that's why they exist. And they also exist, because 15 years ago, I saw a pharma company tried to make a, like a dictionary of diabetes definitions, and they put it up for a while and took it back down, probably because it didn't make them any money or get them traffic. So they thought it's not worth our time. But I always thought that's a good idea. Like, if I ever had a place where I could Compendium, everything, I would definitely put definitions there. That's a great idea. And so I did it, but I actually have a place to put it. And because I'm not trying to make money off of it, or because I'm not trying to drive traffic to my insulin pan or whatever it is, like whatever it is people were trying to do back then I have the freedom to just keep putting the information in and hoping that you can find it. And and then I don't know if you've noticed recently that there's a lovely woman named Isabel, who's been helping with the Facebook page. And she's just helping people like, Hey, I think your question pertains to this episode, or you should try these or that. And I think that's helping people get to where they need to be better, because I do take your point helpful. Yeah, it's a little bit of a free for all. But there's nothing I can do about that either.

Toni 58:50
Right? You're, like, shifting through the number of posts that you get a day

Scott Benner 58:54
is, it's insane. It's insane.

Toni 58:57
And so as one person trying to sift through all of that, that's a full time job in itself, not even to mention, you know, your other full time job.

Scott Benner 59:06
Yeah, the podcast, right. So I, you know, at some point, it's not that something has to give, but it's I'm recording the podcast, three, four times a week, I'm editing it almost every day. You know, it's, I am. And you can say, well hire people. But that's not easy. Like, you know, how much would you how much would you have to hire a competent adult who understood how my brain works and how the Facebook page works and what my goals are to sit in there and moderate like, like, seriously, you're a person. How much would you charge to do that for a year? Like, what would make it worth your while? It's a lot of money. Yeah, yeah.

Toni 59:41
I mean, it's not fun work. Yeah.

Scott Benner 59:43
It's not fun work. It's time consuming. And I'm not to the point. This podcast isn't to the point where I could say to you, Hey, Tony, here's a reasonable salary with benefits and you're a Facebook moderator. Now. Those people really exist in the world. There are paid people Do that I can't afford to pay somebody that much money. So I count on people who are just love the podcast and want to help it. Again, it's sort of just the best I can do like.

Toni 1:00:12
And that's what I love about the diabetes community. I saw a quote the other day that said, the like one of the few diseases or diagnoses where your friends become strangers, and strangers become friends. And it's, it's absolutely true. When Evelyn was diagnosed, I posted it on on my Instagram, which is private, only my friends. and a high school friend of mine said, Hey, this other high school friend of ours, who you're not connected with has a son named Bo, who's eight and was diagnosed six months ago, let me connect you to. And I came home from the hospital with Evelyn and I had four boxes of diabetes stuff that I didn't know I needed, that I absolutely needed, that she said would help get me started. And now we text almost daily, just about, you know, yesterday, it was What's your correction factor, and she didn't realize you could have different settings for correction factor at different times of the day. Or like, what's your carb ratio right now with Bo Evelyn is doing XY and Z, or I'm not sleeping, and I'm so tired and my husband snoring next to me, and it's driving me crazy. You know, and it's it's just incredible the way that the community works.

Scott Benner 1:01:23
i One of the things that kills me is if my wife can't sleep, but I'm awake to do something for Arden. It makes me mad that we're both alone. I'm like I said, or I'm like, if you're going to be up, why don't you just do it?

While you were talking, I pulled something up. There are on average 100 posts a day on the Facebook group a low day, a low day is like 70 or 80. A high days about 110. Yeah.

Toni 1:01:56
And it's, it's no wonder that sometimes when I post questions, I get zero answer.

Scott Benner 1:02:02
I bumped up a question that I saw today that I saw today, I thought it was a great question that was from two days ago. And I was like, hey, somebody find this. You know, there are almost 20,000 members that have the podcast, Facebook group, the private one, that's the one we're talking about. But in the course of any day, between 12 and 14,000 of them are active. So they see they see the Facebook page, which is

Toni 1:02:29
when you might have to start doing different areas like the Midwest or the south or the, you know, get up into northeast, break it up into groups just so that people can continue the conversation if so many people are posting Yeah,

Scott Benner 1:02:43
I had this idea. There's there are platforms outside of Facebook that are like better suited for this. But they I saw you I saw you asked about that. Yeah, won't work. Like no, but listen, I'll go back to when I was like 23 years old, I was. I was doing graphic design in a credit union. So as part of the marketing department, and the guy I worked for was older. And he, he comes in and he sits down and he's like, we got to do a giveaway to get people into the into the, you know, the different locations. Yeah. And I was like, what are you gonna give away and he goes, doesn't matter. You could put dogs in the bag and just write free dogs on it. And people would show up. And I was like, What's this now? You know, and he just was like, free. He's like, nobody wants to pay for anything. And so it would, you know, I found out like, if I could put this up, I'd have to pay a moderator. And it would be better for people. But you'd probably have to pay five $9 a month to be in it. And people are like, $5 No way. And I'm like, wow, that's super interesting. Maybe nobody would pay 50 cents for an episode of the podcast. The you know, are far, far, far fewer people would be because I would say it was 5050. Half the people that responded were like, I would do that. And half of them are like, no way. And so I'm like, Okay, well, I can't exclude half of them. So we'll keep it on Facebook and do the best we can with it. And it wasn't about the money. It was about paying for it. And doing it right. But I can't just write a check every year to make make this thing happen. You know what I mean? Like it just I don't know, like there's something about this. There's something about this whole process of helping people that is just, it's just very attractive to me. I like that. I guess I like thinking of myself back then. And how lost I was and how bad I was at it and where Arden's agency was and God where her stability must have been, and realizing that there are other people who could have that could have ended up being their reality and now it's not going to be I don't even care that it's because of me. I care I care that it It's not happening. You know, like, I like thinking that like your little daughter that came in it was just like mommy my iPad don't work no more like, like, you know, like one day she might be like in college and using some algorithm and meet a boy and have a nice life and that maybe I had like a little something to do with why that skeleton that way, I think that's really cool. You know? So

Toni 1:05:23
yeah, yeah, no, absolutely do. And I think just, you know, the Facebook page has been super helpful. And, you know, all the other people, I definitely have reached out to some individuals that that, for some reason gave me the time of day, and I appreciate them so much for it, if given me just little golden nuggets that have really helped, you know, I'm not going to share everyone's they wouldn't see that's not something I'm into, but she's definitely in a really good place. To a point where her endos like, she's not gonna have any complications. She's not even on looping yet. So she's doing amazing, and you guys are doing amazing, and we feel really, really happy with that. Now, it's just trying to make it easier and

Scott Benner 1:06:05
good for you. Listen, that's what's gonna keep happening, you're gonna keep learning things, you're gonna, you're basically going to take problems in front of you crumble them up and throw them behind you. And then the next thing is gonna pop up, and then you're gonna reach in your belt go, oh, you know what, Scott talked about this, and then you're gonna crumble up the next thing and throw it away, and it's gonna keep happening, like, I'm not gonna lie to you, it's not gonna get to a place where you're just gonna be like, I don't think about diabetes anymore. But right, the time you think about it won't be as frustrating or as long or as exhausting. And I think that's a big deal. Do you know where I'm recording this today, I believe today is the 100th anniversary of the use of insulin. Really, it is January 11. So I have an article that will go up today. On this day, January 11 2022. Insulin was first used to treat diabetes. On that day, 14 year old Leonard Thompson was injected with a pancreatic extract prepared by Dr. Frederick Banting. And medical student Charles Best. So that was 100 years ago, today. 101 years ago. I have a baby, it gets diabetes. She's not even alive anymore. And now we're talking about glucose monitors, test strips that, you know, allow you to go back and get it again, CGM algorithms, a group of strangers being brought together by an electronic device to hear what one person experienced 15 years ago to see what they can derive from that and do for themselves, like this. Insane. You know what I mean? 100 years ago, y'all dead? My daughter is one of you. You know what I mean? And instead, this is what we're doing. I mean, I know it's tough when people say, you know, where do you see what's coming? Where do you see what's coming, but you know, Dexcom G seven is going to come out soon. And then you know, I only part five is on its way, tandems got their control IQ, I hear they're working on another version of that Medtronic is going to take another swing and you know, put their algorithm out again, and this stuff's just gonna keep happening.

Toni 1:08:11
Yeah, yeah, I will, I will say that. I've been hearing that since she was diagnosed, like, just wait, the next technology is going to come out, it's just around the corner, and it hasn't come out. It's still around the corner. And I feel like that's a false hope that a lot of T ones. And T teams have been given their entire lives. And they were told that oh, the cure is just around the corner, it's going to happen. And being able to just understand how to use the tools that we have right now has been so much more helpful than this false hope. And giving a sense of being in control has been really, really helpful too. Like, you know what, I'm just going to change her Basal rate here, carb ratio here because I'm going to Bolus 150% of these carbs because it's not wheat carbs. It's white carbs. That that has been super, super helpful to

Scott Benner 1:09:05
hearing you say that is absolutely like, I just It's heartwarming to me. I think it's amazing that you think about it that way this close to it, and I wasn't trying to say hold on, they're gonna cure it. And I know it doesn't feel like that in your, in your moment, like five years from now, three years from now, six months from now is a long ass time when you're trying to live with diabetes. But, but the truth is, is that, you know, 40 years ago, people were peeing on test strips that really weren't giving them much value. And, you know, 25 years ago, there was insulin that didn't work very quickly and Arden doesn't tolerate it very well. But there's two insulins now fie Aspen lumen Jeff maybe. And Arden can't use it because it kind of It stings. If burn, burns things and it makes her feel bruised. It's unusable for her. It's something to do with the compound that they that they use to make it work more quickly. But the truth is For every person who it doesn't work for, it works for some people,

Toni 1:10:03
we have options. And that's what's really empowering is having options. Yeah,

Scott Benner 1:10:08
right. It's absolutely amazing, like, and so it won't be right around the corner. But one day, they will make an insulin that works faster that doesn't bother Arden's skin. And then she won't have to think about Pre-Bolus. And as much, or it might be easier to stop a high blood sugar or whatever like are the algorithms will be able to use it more, you know, efficiently. It's just like, it's not going to stop, you know, and, and 100, another 100 years from now, when some guy is talking to you on his brain cast, you know what I mean? Because you're, you have a chip in your brain, and he just, you know, he just talks and you hear it if you want to,

Toni 1:10:47
you don't even have to hear it, you just like you'll just understand it, understand it, and it doesn't take any time.

Scott Benner 1:10:52
Right, right? You walk up to a console and push the diabetes button, and five seconds later, you completely understand it. No, like, who knows? Like, I'm just saying, who knows? Also, we could all be dead from a tidal wave. I'm not saying that.

Toni 1:11:06
Anything is anything is possible.

Scott Benner 1:11:09
But yeah, in the moment, I just think this is the I think this is the best delivery system that exists right now, for people who are trying to understand a big ranging problem that they didn't have any understanding of before. Like, it's just, it's the best way to do it. And you have to, you have to be able to filter through the people who have ill intentions who are just trying to make money, who are who'd maybe don't really know what they're talking about. There's a ton of people that want to be influencers, but don't understand what they're saying even right, you know, if you're lucky enough to find somebody that you jive with, that is saying things. That is how that are helping you. You want. It doesn't have to be me like you don't I mean, you want. That's great. Yeah. And you're looking for stability. That's it.

Toni 1:12:00
All right, let me ask you, Scott, did you after the news article came out about the individual who had stem cells that stem cells injected into his body that then has given his body the ability to produce insulin, and he's no longer insulin dependent? Did you get like hordes of phone calls or text messages or emails from non T one thing? You know, this is so great and wonderful. Congratulations, diabetes has been cured.

Scott Benner 1:12:30
Well, not that last time. But it happened the first times is when artists were newly diagnosed. It happened to me so much that I talked about it like I, you'll see me pop in once in a while. And there's a time of year that I call diabetes Cure season. But it's awesome. Let me get a drink of water Hold on. So the simple truth is that people are doing research, research costs money. And so they published their findings, hoping to get more money for more research, right? Like, imagine, imagine if you were a cashier at Walmart, and Walmart didn't pay you, you had to talk other people into believing in to how great your cashiering skills were that they should give you some money to keep cashiering like, that's basically what's happening. Right.

Toni 1:13:16
Okay, that makes sense. I never thought of it from that angle. But I got so I got so many. And was just like, had to explain to them that this didn't mean much for Evelyn. Oh,

Scott Benner 1:13:28
yeah. Because those people believe that you were on your way to like, like to Costco or where a lady was going to come out the side door and inject Evelyn and she doesn't have diabetes anymore. Like, yeah, right. No, I know. Well, so when it happened to me the first time, I did it to myself. You know, it was the first time that I had read about a mouse with type one diabetes being cured. And I like went to my wife and I was like, Oh, my God, look at this. It's the greatest news ever. Like, I can't believe we're so lucky. Arden was just diagnosed, right at the time they cure diabetes. And, and my and my, and I was so earnest that my wife read that my wife has a medical science background. And she's like, Yeah, Scott, she's like, this is just a mouse study. And she's like, this is almost meaningless to harden. Like, oh, okay, she goes, I mean, good, good honors, like, maybe this will turn into something in 15 or 20 years. She's like, but this isn't like today. And then I realized that you know, how the business works. And it's very important, by the way, like, that's how it works. And so I don't, I'm not mad about it. I just tried to step up so that the people who are newly diagnosed who think Oh, my God, I just saw this thing it's over. So they understand that if there was a cure to type one diabetes, you wouldn't have to hear about it in one place. Right? It would be on every news channel. Everyone you know, would be talking about it your doctor's office would be calling you like like it would be like a deafening siren going off. You know, it's a And it's not to say it's not going to happen, or somebody's not going to figure it out, or that encapsulation might not be a great thing or any number of the other things people are looking into. It's just to say that, you know, you know, I don't know if you've heard bird in the hand, but you know, when someone's putting the burden your hand, that'll be the time for you to get very excited. Not

Toni 1:15:18
Yeah, yeah, exactly. When you're hearing from your endocrinologist about it and not, you know, online Gazette. And then then it has some meaning. But it's so hard telling those people that come up to you, and are so excited for you that like, everyone's gonna be cured, like, no.

Scott Benner 1:15:37
But as hard as it is for you to say it back to them. How, how badly did it make you feel?

Toni 1:15:43
I don't I don't know. I'm just getting to the point of like, I just don't want to have to explain it. Because I've explained it to the same people many times. And I just, yeah, I just, you know, like, you know, for example, I woke up with Evelyn every hour. She had this stubborn high two nights ago. And I think that her CGM was just wrong. And I kept bolusing and Bolus in the wrong number. So she wasn't coming down. But the alarm every hour is just like that sound. And then, you know, her friend was quarantined from school. She knows Evelyn's quarantine from school, do you want to have a play date? play date means that come to my house because your kids are full time. And my kid has diabetes. So they're going to be working. And I'm going to be calling saying Give her something and they're going to be on a work call. And I just didn't want to explain that. Like, no, I don't want any other people in my house today. I don't want any other kids in my house today. I'm exhausted and grumpy. And I have done that in the past. Like, you know, Evelyn woke every hour, and I'm really tired, and I don't. And now I'm just like, Nah, nothing. Today.

Scott Benner 1:16:55
You keep your kid over there. How's that sound?

Toni 1:16:58
Yes, you know that it gets to that point. And so with with the, you know, the, you know, as they're, like, congratulating me, it's just like, do I feel like spending energy explaining to them the reasons why this is not something that I'm excited about? Or do I just say? Yeah, cool. Yeah, I did read that. Awesome. And then like, talk about something else?

Scott Benner 1:17:20
Or come off like the lady who's like, No, that isn't gonna happen. Because if you say, if you were to say to somebody, you know, you listen, that's not happening right now. I appreciate you telling me about it. But it's that's not that's not a now thing you might come off as being like, oh, geez, what's wrong with her? Like, because they don't know your shot? You know what I mean? I hear you.

Toni 1:17:39
I know. And I did explain it to one person who I'm very close with, and she's currently battling breast cancer. So, you know, that kind of happened when Evelyn was diagnosed? So it was kind of like we both were in the thick of like some not ideal pandemic diagnoses. And so commiserating and just like medical, medical, medical, medical. And I was like, Well, you know, putting a grade school kid on immunosuppressants. Probably not a good idea, during a pandemic, and it's not affordable, and they did it to one person, and they didn't cure the autoimmune disease. They just replaced the, the, you know, I'm sorry, beta cells. So who's not to say, when this person gets sick again, that their body's going to attack the new beta cells, and then they're going to need treatment again, again, blah, blah, blah. Yeah, exactly. Blah, blah. And you could just see her drifting off and then like traveling, slowly backing away slowly. He just sort of like go back to get some food at the table and whatever. But, you know, you try to explain it to people, so they understand and you just can tell like, no, there's gone over their head. And that's okay. That's okay. But it's, it's picking and choosing

Scott Benner 1:18:56
No, I understand. And they're not going to know, and they're well, meaning. I mean, most listen, I'm assuming they're well, meaning maybe there's somebody in there who's trying to be a superhero and get to your first but the great news.

Toni 1:19:07
I beat your endocrinologist. Congratulations. Here's the cure.

Scott Benner 1:19:11
I came up with a cure. I found it on CNN, Europe.

Toni 1:19:17
It's trending all over Instagram. Did you see

Scott Benner 1:19:20
there's a it's a very, very reputable thing here called bills. Medical News. Now, I've bill seems to be a nice man who lives with his mother. And he's 48 It's weird. I know. Listen, they mean well, and that's of no real comfort to you when you've had to tell the 17 person. Yeah, yeah, exactly. Oh, my kid still has diabetes. Thanks for reminding me again. I was up all night last night. This one. I haven't had sex in six months. Thank you. Yeah. Listen, I will say you know, just functionally when you see a number on a CGM, that's higher It's not acting the way you expect. Pull out a meter and give it a give it a look. Oh,

Toni 1:20:05
absolutely, yeah. But it's, it's interesting. Like when you lack sleep, so much of the simple tools, you forget. You just like completely forgot you're exhausted. And you keep reaching over the bed because I can Bolus my daughter through the wall from my bed to her bed. If I reach over my husband's body, sleeping, snoring body, he doesn't wake from the high alarms and it's just not coming down. It's just not coming down. Oh god, it's probably the wrong number. And you know, it's just those simple things when you're sleep deprived, you just completely forget.

Scott Benner 1:20:42
Yeah, no, I hear you. It's really crazy. That Listen, my wife only hears the low alarms. The other night, she's like Arden's low, and I'm like what you say she's low, four beeps. vapes. I'm like four peeps. Let me look. So I look at Arden's blood sugar's like 90. And I'm like, What are you talking about? And then I look back, I scroll back, two and a half hours prior Arden's blood sugar dipped down to 55 for like, literally, like eight minutes and went back up again. I don't know if it was like, a compression low or whatever. I don't even know. Yeah, but so the next morning, she was Arden. All right. Last night. I was like, oh, yeah, I forgot to tell you. You're the worst Lassie in the world. And she's like, you told me that the Jimmy fell down the well, six hours after he was down the well. It was like, I'm like, you're like four beats four beeps that I look. And I'm like, and so I explained all the things. I was told like, it just happened. And I was like, yeah,

Toni 1:21:35
it didn't. Oh, my gosh, so funny. Trust. Yeah, I can I can tell my husband like, hey, I'll elbow him. Hey, it's your turn go in X y&z He's like, Oh, good. Yeah, exactly. And then he doesn't he did not wake up from the elbow. He just responded Okay, in his sleep, and he doesn't remember any of it. I'm like, but yeah, most of the time, he's really good and really helpful. But, you know, you get into those ebbs and flows where it bounces from, you know, teeter totters from one person taking the brunt to the other person taking. I hear Yeah, it's really it is my turn. It's your turn to take it. Well, it is my

Scott Benner 1:22:12
turn. What you do is on on Saturday morning, you explain to your husband, I'm not doing this tonight. So at like five o'clock, I'm done. And then it's just you and then you go to bed early, watch a little movie and then fall asleep. And just so sleep all the trouble.

Toni 1:22:29
The trouble is my husband's career. He's a collegiate swim coach. Oh, okay. Weekend, he has practice at 5am. And he works on Saturday mornings, until like, one o'clock and then sometimes works on Sundays to Gotcha. So like the sleep thing is a real struggle, because he's got to be better always kind of Burly. Yeah, he's got to get up and go to work early. So that that's been tough, but they're in intercession right now. So they're between semesters, so he's able to manage the schedule differently. Interesting, which is really nice.

Scott Benner 1:23:05
Well, Tony, I enjoyed talking to you, I think, because you don't listen to the podcast. Yeah, it was really great. You didn't like you don't have a real feel for my cadence or where I go. And I found that refreshing was nice.

Toni 1:23:18
Yeah, I asked you specifically, like, what questions are you going to be asking me because, you know, I was honestly really afraid that you're just gonna attack attack me and my experience and not listening to the podcast, or asking questions that you've answered a million times

Scott Benner 1:23:33
is that I'm sorry. I wasn't, you know, that

Toni 1:23:37
is not how you that is not how you came up? No, I mean, I'm just talking to a stranger. Oh, no, no, no, no, just who doesn't listen to my podcast and wants to talk to me on my podcast seems like, Oh, am I in trouble? Did I do something wrong? And you were like, I don't know. We're just gonna have a conversation. And I'll just ask questions that come up as we go. So that was that was really nice to

Scott Benner 1:24:02
have to reword that question. The next time I ask it, what I really wanted to know was like, Can you please explain to me what this Facebook group does? And how it and how it's valuable for you? Because yeah, I I'm not baffled. But you tried to imagine, from my perspective, the Facebook group was just a thing people asked for, like, it wasn't some like Machiavellian, like, here's what I'll do. I'll make a podcast and I'll put a Facebook group with it. And like, I didn't think of it that way. And so I was just like, I wonder what people get out of the Facebook group when they don't know the podcast. That would be interesting. I should probably have said it more like that. Sorry. Okay. No, I didn't. I think you did, too.

Toni 1:24:41
Yeah, yeah. Yeah. No, absolutely. I just, I hope people enjoy listening to our conversation.

Scott Benner 1:24:48
Absolutely. Well, because you're delightful. Thank you. Did you have you ever done anything like this in the past?

Toni 1:24:55
Yeah, yeah. So I work in leadership development. When I have time to work, and I work with athletes and collegiate College, collegiate athletics, I do some corporate leadership development as well. And so I've been on podcasts and hosted a podcast, not that I'm as good as you are at hosting. But it's not something I'm unfamiliar with having conversation, recorded conversations with people.

Scott Benner 1:25:23
So yeah, cuz you're very, you're very natural at it. So I was like, she has to thank you. Yeah, of course, it was. It was You were great. I mean, I was terrific, but you were really good. And we didn't joke around. Tony. You're welcome. Because you're very You seem very serious. But not a bad way.

Toni 1:25:41
Are you? I, I'm, I'm okay. I'm not very serious. I'm pretty silly. But I know that you're super sarcastic. And I don't speak sarcasm. So that may be part of

Scott Benner 1:25:53
it. You stayed out of that side of the pool? That was Yeah, yeah. So some

Toni 1:25:57
some, you know, I've got a really good friend who lives five doors down and comes over all the time, and he's super sarcastic. And I have to remind him like, Paul, Are you being serious? Or are you not being serious? Because I don't know how to take what you just said. He was like, sarcasm, like, okay, good. We're moving on,

Scott Benner 1:26:14
do you? Do you not hear it? Do you not hear sarcasm?

Toni 1:26:18
I don't. I, I don't unless I know someone really well, I just I'm always worried that sarcasm is steeped in some form of truth. And so that's my concern is like, what truth is there and what you just said? And should I be worried about that? Or should I overthink that or?

Scott Benner 1:26:33
Well, while I can't speak for your neighbor, I can tell you, I can tell you this, the way my brain works. It does. It's not steeped in anything. I just say the next most reasonable, most helpful, or most silly thing that I can think of, like I don't I'm not like, Oh, I'll say this now, so that later Tony realizes that what I really meant was I don't have any of that me. I just and by the way, as As luck would have it. My wife doesn't hear sarcasm very well. Oh, no. Yeah, it's pretty interesting. I have to like, yeah, I should basically hold a sign on a stick that said that was a joke. I would just pull it up. Like wily Coyote. And then Arden has exact Yes. 20 Exactly. And, and Arden has basically my personality and like a different body. So like, ganged up on, she's like, they're coming at me from all sides. I was like, we're just like having fun. Like, we love you. And she's like, it doesn't feel like it. I'm like, you are taking this way too seriously. So anyway, I will not tell you what happened yesterday. Oh, no, because my wife will like literally like she'll get a stick and beat me to death with it. But it was so funny. And it emanated from my wife. And we shared it amongst each other. And we all had such a lovely time. And we weren't making fun of her. It was just fun. And later, she's like, why did you guys do that? And I was like, do what? And she's like, it was embarrassing. I was like, it wasn't embarrassing. It was the greatest thing that happened in like the last three weeks. And she's does not see it that way. So Oh, no. 20 more years on the planet. She's gonna get it.

Toni 1:28:09
Yeah, I think you should just adopt the sign. Just make the sign. Be the wily coyote and just like a hold it up.

Scott Benner 1:28:17
Excellent idea. I don't know. I don't know if you noticed earlier. When I said, you just don't go in that part of the pool. But that was like a thing because your husband's a swim coach.

Toni 1:28:29
Well, I got it. I got it. Thank you. It was a dad. It was a dad joke. I'm happy to glance

Scott Benner 1:28:33
over though. I'm someone's dad. And if I joked on the real level of my, if I joked on this podcast on the real level of my sense of humor. Most of you would be horrified by me. So I can't do that. I have to give you the top 3% of what I'm thinking on which is which is sarcasm and dad jokes. Yes, plenty. It's plenty for this situation. It doesn't love it doesn't need the whole thing. We'll stop the recording. I'll tell you a joke. It'll curl your toes. Oh, no, no. Well, thank you very much for doing this. I really appreciate it. Yeah,

Toni 1:29:07
thank you for being kind for creating a podcast that share so much knowledge on diabetes and creating that Facebook page because that seems to be at the moment the most accessible for me for my time. I appreciate the knowledge and the community for sure.

Scott Benner 1:29:23
It's very much my pleasure. I genuinely mean that. Okay, hold on one second for me.

A huge thank you to one of today's sponsors, G voc glucagon, find out more about Chivo Capo pen at G Vogue glucagon.com forward slash juice box. you spell that GVOKEGL You see ag o n.com. Forward slash juicebox. And thanks so much to us med. Get your diabetes supplies at US med 888-721-1514 or by going to us med.com forward slash juicebox. To find the private Facebook page that we spoke about today, go to Facebook and search for Juicebox Podcast, type one diabetes. If you're enjoying the show, please subscribe and the audio app that you're listening in right now. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

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