#1977 Animating Type One for Neurodivergent Kids
Animating Type One for Neurodivergent Kids
Radhika is a pediatric endocrinologist. Molly is the mother of a neurodivergent daughter with type 1. Together they are building animated diabetes education for people the usual materials were never made for.
Jump to a moment
- It started because the materials didn't exist. Molly's daughter learns visually, and when she went looking for a comprehensive library of diabetes videos she couldn't find one. Radhika, a pediatric endocrinologist, was introduced to her as an out-of-the-box thinker. What they found when they priced it out: companies that make explainer videos for clinical trials wanted around fifteen thousand dollars for five minutes — and would keep the copyright.
- So they built it themselves, largely on donated time. A bilingual educator offered to do the Spanish work on her own time for no money, and another educator at a local hospital donated as well. One stood in front of a blue screen and interpreted an entire series. Their Spanish Instagram grew faster than the English one, which tells its own story about who isn't being served.
- The audience is neurodivergent people with type 1 — and the messaging is the hard part. Radhika is candid that the neurodivergent community didn't initially think the videos were for them, because they're used to assuming everything is made for neurotypical people. Both Scott and Molly land on the same point from different directions: material designed for people who need things explained clearly tends to be better for everyone.
- What's actually in it. Topics most education skips — interoception, how a low feels before you can name it, and a playlist on mental health and exercise built with Ginger Vieira. Their stated ambition is to become something like the Khan Academy of type 1, with a free, browsable library rather than a handful of scattered clips.
- They're looking for two things. Adults who are neurodivergent and have type 1, or families of neurodivergent children with type 1, to take part in a focus group. And funding — they have tax returns and impact reports ready, and they're clear that volunteers can only carry it so far. Scott spends the back half talking through how to get the message in front of the right people.
- AnimaT1D — Radhika and Molly's nonprofit — free animated type 1 education, including Spanish-language versions.
- Diabetes Pro Tip series — Episodes 1000-1025 — settings, insulin timing, and food impact.
- Bold Beginnings series — The newly diagnosed series — the one an educator interpreted into Spanish on her own time.
Every word of the conversation
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Hi. My name is doctor Radhika Purushottaman. I'm a pediatric endocrinologist and cofounder of the nonprofit Anima t one d.
An endocrinologist and a mom2:11
Hi. I'm Molly Barry, and I'm a speech language pathologist and mother to a daughter who is autistic and has type one.
It's nice to meet you both.
Nice to meet you.
Where do I find both of you? You're obviously in your homes, but you're not together. Mm-mm. Radhika?
I'm in Portland, Oregon.
Okay. And Molly?
And I'm an hour and a half south in Eugene, Oregon. Okay.
How did you meet each other?
Would you believe it if we say online?
It's the only way people meet each other. So sure. I believe that completely. Wrapped around...
Women in our fifties, it's not anything like what it sounds like.
We were lonely, Scott. Just lonely. That's all. So
the short version. So Molly's daughter is seen by one of my partners in the clinic. She, enduring one of her visits, approached him and said, you know, my soon to be adult daughter who's, high functioning autistic and has type one does not really have educational materials that would make her independent. What do I do? Where do I go?
And my partner knows to me... Knows me to be an out of box thinker, and he said, let me hook you up with just the right person. And that's how we met. Molly and I had all bunch of phone conversations first. So we're not...
We don't even... We didn't even know what the other person looks like. So phone calls and eventually a couple of Zoom meetings later, that's when the whole... The seed for the nonprofit started. So that's how we met.
We didn't know each other before this.
Molly, what what were you trying to solve for? What was going on?
I think the... My daughter was 16, 17. And as a parent of... Instead of special needs, unique unique needs, you always think, what if when I'm not here, then what?
Yeah.
And so she was approaching the 18 year old age. I was thinking, how in the world will she be... I use the word interdependent. I don't think she'll ever be fully independent with her type one. And I went online, did Google searches, and I just...
Looking for videos that didn't exist4:26
I couldn't find a comprehensive, you know, library of videos or visual education, and she learns best visually. So that's when I asked Radhika's colleague, and I said, I can't find this anywhere. And he said, well, you do it. So... Okay.
What are you? Busy?
Yeah. So I... Anything to help her visual comprehensive. Like, there's videos here and there Mhmm. But there wasn't something like I go to your podcast and you...
You're you're comprehensive in your information, and it's auditory. Right? So what is there in video format or visual breaking down, you know, complex medical...
Ideas. Yeah. Wait. Listen. I feel for you because I have two children.
They're 26 and 22 now. But when they were little and, you know, we had them, you know, one of the things you do as an adult is, like, make a, like, a will and who's gonna... Like, you know, the car goes off the road. Who's taking the kids kind of thing? We looked very hard at our extended family.
My wife and I are like, I don't think there's anyone to leave them to. So we... We're like, do we take them with us? I was like, I don't think that's how it works. So...
But it it is, like, a frightening idea of, like, what happens when I'm not here. Yeah. You know? And how do you prepare them for get... You know, as best as possible?
I mean, it's gotta be insane for people going through what you're going through. So, Radhika, when when she contacts you, are you like, I have a perfect idea or do you have to go back and forth for a while until you land on what you landed on?
Oh, we went back and forth. So usually, my approach to any problem, smaller or big is never... I I don't know what to do or I... That's not my problem or I can't help you. That's probably why my colleague connected Molly with me.
Mhmm. So one of the first thing I wanted to do is we got on the phone, asked Molly what did she want. And one of the questions I asked her is, if money resources were not an issue, if everything you wished for you had at your feet, what would that look like? So that gave me a good idea of what it is that would help Molly's daughter. And once I had that framework, with Molly's permission, I said, do you care if I start asking around people?
And she said, no. Please go ahead. She didn't feel possessive about the idea or that she wanted to keep it to herself. So I just started emailing. I didn't have any moment like this is where we need to go.
Emailing every institution she could find6:52
So I just started emailing all kinds of institutions, big and small, tall words, like, you know, the powers that be in the type one diabetes world. Almost like cold emailing when you want an internship. So there are a lot of emails I didn't get replies to. Some of them did and acknowledged that, you know, type one diabetes for neurodivergent population is a space that has been missed. It is important.
It is needed. Good luck to you.
Yeah.
Like, okay.
Thanks. No checks. Was there a check-in that note? No. There was not, Molly.
There was an invisible paragraph. So obviously a lot in between the lines that we could figure out. So Yeah. Then we said, okay. This kept coming back to visual stories and animation.
So we said, why don't we call, you know, touch base with a medical animator? So there were those companies that create small videos for clinical trials and, you know, explaining complex concepts, but in the context of institutions. So we reached out to one, had a meeting with them, on a cold November morning. So... And they were very impressed and interested in our idea, but they were charging crazy amounts of money.
I think, like, $15,000 for a five minute video and they would keep the copyrights.
So... Oh, for that... Molly, for that money, you could just pay somebody to live with your daughter after you're gone. Mean... No.
Seriously. Yeah.
Yeah. It was eye opening. Yeah.
For sure. I I... Listen. I I I certainly don't want to hear a review online about how I made this about me, so I'll try to be brief. But I've...
By the way, for those of you who feel that way, it's a podcast. If I just sat here, they'd just be talking into a recorder. So I I I go through this all the time. Like, to your point, you know, we made pro tips, then bold beginnings, and defining diabetes, and defining thyroid. And then I went to small sips because people are like, that's...
Some people would say, forty five minutes is so long. I'm like, well, you're trying to learn about diabetes. It's probably not gonna take a second, but... Okay. And I distilled it down and down and down and down until it was ten minutes worth of conversation.
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We're gonna get back to the show. So I figure I've got everyone covered on audio, and then I've had this thought too. Like, well, what if I animated it or, you know, or even in the... I see you. I'm on your website.
It seems to me like you have Spanish videos as well. I spent the last ten years having conversations with people. Like, could we just dub the... You know, before AI, like, what would that look like to hire two voice actors to reenact an episode because you have to keep it, like, human. It can't just be read back and forth.
And then somebody would say, oh, well, we can do it for this much a minute. And I was like, I don't know who you think is gonna pay for that. And then and then after that, like, I can't QC it because I don't speak Spanish. And so, like... So then there's this great idea that would really help people.
You just... I just... I set it down. I was like, can't do that then. And you...
It's... You're left with, alright. I'll put the transcripts online, and you could use Chrome maybe to translate the transcript for yourself, and that keeps me out of the trans... The translation process. It's so much of that crap that I'm sure you guys run into all the time because what I...
Fifteen thousand dollars for five minutes12:15
In my heart, I just wanna be like, look. Here it is. You know, it's on you, but I hope it helps you. I don't know how you got through all this. This...
Is it just the two of you, or did you bring in more suckers to help?
More more volunteers.
Oh, volunteers. Sure. Got it.
We use the word volunteers. So so how that process ended is I went on one of those DIY animation websites, and I made the first video myself. Yeah. So all the videos are scripted and created by me. So what we ended up doing for the Spanish videos is we were at a conference.
Oh, alright. What was it, Molly? ADC. Yes. Yeah.
Pacific Northwest chapter. Mhmm. So that was in October 2024. One of the clinics came up and they said, hey. We have a very, very passionate bilingual educator who really is invested in the Spanish speaking population.
Why don't you reach out to her? She may be interested in translating. So we reached out and I told her, like, because I have full reign on these videos, we can go back and change all the characters to Spanish speaking, Spanish looking characters. So... And give them appropriate names and appropriate surroundings and change the context to be culturally appropriate so they're not...
It doesn't look like it's just a dubbed door voice over.
The educator who said she'd do it for free13:42
Right.
And I was shocked that she said she'll do it on her own time but for no money. Now I am beginner Spanish, so I was I was able to change the characters, change the script, clean up the grammar a little bit, and then send it to her. Mhmm. So she didn't have to start from an English script. She started from the Spanish script.
And then she... And I would tell her, like, I'm just a beginner. She said, yep. I can tell. So...
But she said it was still enough. So she's not going and changing dialogue by dialogue. And then she would send it back. Obviously, we didn't give her... Give them a timeline, and she was still giving it back in two, three weeks.
And then we found another educator in a local hospital who's also donate... Donating her time. So between the two of them... So we had now this process where I would take the video, almost reverse engineer it in Spanish, and then put it back up. So it was vetted in that there was a QC process, and that's how the whole Spanish channel came to be.
How do you get it to people? Because I have... I... Maybe... God.
I don't know how long it's been now. Maybe two years ago, I had... You know, I complained while I'm making the podcast. Like, I just... I wish somebody could translate this and keep me out of it, but it would be right.
And then I could just put it... Because I would... Listen. I'd start a Spanish version of the Juice Box podcast in five seconds and put... I would put everything out.
I don't know how to accomplish that. Right? So in the course of that conversation, this lovely person gets ahold of me, and she's like, I don't speak Spanish, but I do sign. She's like, I'm I'm a... You know, I'm an ASL interpreter.
And she stood herself in front of a blue screen and interpreted the entire bold beginning series for people, which is, like, don't... Like, lovely. And it's amazing. And I think maybe, you know, the videos have... I'm actually looking right now because I...
Oh, actually, the the the first video has been up for eleven months. It has a fun... A 150 downloads. And in my heart, what I think is I reached a 150 people who are gonna be helped by this, and I think that's terrific. And maybe there's not even a need much beyond that.
I have no idea. But I paid that person thousands and thousands of dollars out of out of my pocket to make this thing thinking that someone would see it and go, oh, that's a great idea. Let... And nobody comes along. And you show it to people and they go, that's nice.
You you know? And you're like, oh, okay. Mhmm. I see. So so once you, like, once you are...
Like, I'm dying to know, like, the the Spanish thing, did you... Is it popular? Did you... Were you able to get it to people? Or are you in the boat I'm in where I'm like, I've helped a certain number of people.
It's been very valuable for them. I don't know how to get it wider than this.
I think option d. Because when people came up to us at that booth at the ADCS conference, I think the most common question apart from how... What's the catch with this channel Mhmm. The second most common question is do you have it in Spanish? And so we thought when we figured out the formula and we create a Spanish channel, it will probably take off.
And our Spanish Instagram, for example, got got followers way faster than the English Instagram channel.
Mhmm.
So that was our yardstick. We thought this would take off. But as today, our English channel has 557 subscribers and our Spanish channel has 63.
I'm putting together a, I think it's... I don't know how many parts it's gonna be, but I'm putting it together a series with a therapist that is on the podcast all the time. And I basically took all of the research that talks about why people with illnesses don't help themselves or or make, you know, a ton of effort or anything like that. And then I I took it to diabetes. And I...
Why people don't help themselves17:34
Because I look at it, I think that this has gotta be... Like, yes, it's getting it in front of somebody, but I get in front of a lot of people. And I was actually pulling something up to to tell you something. So I've been for years told by clinicians, I... Oh my god.
I share your podcast all the time. It's hard to share. And they mean because it's a podcast and you can't just... You know what I mean? Like, it's not one link that takes you to something.
So Mhmm. So we... You know, I made it easier to share and easier to share again and easier to share again and, like, over and over and over. And then I I was like, the... This one...
I got an email six months ago, and it's from a person in Toronto. She's a... Works endocrinologist office. She's like, listen. I show your podcast all day long, but I'm handing out paper handouts.
She's like, it's ridiculous. So I built a website, like, page that you go to and literally one click, it generates an email. One click, it generates a text or a copy or a printout, whatever you want. One click for every series in the podcast. This this is awesome.
Thank you. Everyone's gonna love this. I said, okay. I slept myself to Ohio for ADCES. I stood there for four days.
I handed out thousands of cards with a QR code on it for that website. And everybody everybody was like, oh my god. Thank you. Thank you. Thank you.
Thank you. Thank you. 84 clicks. Why don't I just walk outside and scream? I have a website for Endos to share my podcast.
I bet you I could reach 84 people if I did it that way. And and so, like, so the... Even at the clinician level, at some point, people say what they want, then they don't do anything after that. Like... Or, like...
And I'm not even... It's not pejorative to me. Like, life's hard. You know what I mean? People are busy.
Like, I get it all. But when you're on this side of it, I mean, honestly, how many hours, days, weeks, months, years have you guys put into this?
Countless.
Yeah. Right. Yeah. What's the what's the answer? Like, when you sit around...
I know... Listen. I met you guys twenty minutes ago. I know you sit around and have the same conversations I have. Like, so what's the answer to all this?
Do you have any ideas?
No. I think it's all... I would... We've tried grassroots. There's conflict of interest at work.
Right? So I can't just go and say, go to my channel. But I did get permission to, like, slip into slip it into the new onset binders. Mhmm. We give it out to flyers at events.
So the local breakthrough t one d events, things like that. I still don't know, like, because I'm on the other side also. So I'm seeing these children families come into my office. Not everybody's on the Internet. They not all have Facebook accounts.
They're not all going to these events. So I think doctor's offices, that's their common denominator. They show up to their doctor's visits. Yeah. So clinicians are the place to be.
So I even created a... What's called an after visit summary, like a... It's called a dot phrase that you can populate into the electronic medical record. And I shared that with my colleagues. It doesn't talk about me anywhere.
It just says here's a resource user. Sure. Sure. I shared that with folks at Kaiser. I've gone to a conference for pediatric endocrinologist.
I shared it with them. There's no real, like, uptick or climb in the views or subscribers after that. So I I have not figured out, and I don't think Molly has either. But if you find a tip or if I find a tip, we could share.
Can I can I just say, I hear you, sister? Can I say that? I I... And listen. You're an endo.
Right? So... And then it's funny because you would think, well, I'm an endo. That adds credibility to it. But you said it adds a layer of complexity because people are like, well, we also have an endocrinologist office, and we'd like people to come here.
And, you know, like, so conflict of interest. I've when you're done, you don't need to do it now. I I just surveyed my listeners. And at this point, the survey has been up for maybe four weeks. It has 233 or so responses.
Right? And positive impact on their physical health, positive impact on their mental health. Their their median WHO well-being rating is in the seventies. Reported negative effects are low from listening to the podcast. Their time in range goes up into 80%.
Their a one c drops by over a point. Their, their lows go down significantly. Like, all this, really incredible feedback that's there. And when I share it out into the world, in my heart, I think there's there's no endocrinologist office in the world who wouldn't be like, at least, hey. You're newly diagnosed.
Go check out this bold beginning series. Like, it's gonna put you in a good footing. We'll look good when it's over. Doesn't happen, but I'm not a doctor. And so I understand that.
Like, I understand that I get shared I get shared like a speakeasy got shared during prohibition, like, in whispers. You you know what I mean? Like... And and it happens. Like, Molly, you...
I don't know. Molly's holding up a card of the podcast that she got up in up in our... Where were you at when you got that? Oregon? Portland.
Oregon. Portland. Right. Right. Right.
Portland. Yeah. Yeah. Thank you, Portland hippies. I appreciate it.
And and so... But but there's... Even at that, like, if you looked at this survey as a clinician, you would say, I would kill to get numbers like this back from my patients. Right? Here I sit, like, I...
Every day, there's a little part of me that gets up and goes, today is the day that the man's gonna call. Like, the the machine will call today. You you know what I mean? And go, hey. You know what?
But that's not how it works. Like, I get looked at and I... And people go, oh, well, you know, that's nice. You you make a podcast, do you? And I'm like, yeah.
How would you feel if I looked at you and went, oh, that's nice. Did you go to medical school? Did you? Like like like like, why are you... Like, anyway, I don't...
The world is... I'm upset. As you could see, this is the wrong podcast for you to come on to. We could talk about this really lovely thing that you're doing because I... Because I know the back end of it.
Go ahead, Molly. Sorry.
I think part of it is building community. So for the neurodivergent, autistic, ADHD, you know, dyslexia... I'm a dyslexia practitioner. So I'm... My students I teach are not gonna go read volumes of books.
They... You know, it's not accessible to them. So I think what we're doing right now is creating an advisory board. We're circling back around our content that we've created, and we're making sure is this accessible? Is this...
Are these the topics that need to be addressed? And there are topics that we have not addressed in the videos Mhmm. That I think will really speak to, you know, I think it was Radhika who said that type one diabetes is the forgotten diabetes. Right? And then within the forgotten diabetes, there are the forgotten population, and those are the neurodivergent individuals.
“The forgotten diabetes”24:34
So I host a very small support group through breakthrough t one d if... For caregivers of those who have type one and, you know, your kids have some sort of neurodivergence. And, yeah, we're a multi marginalized group.
Yeah.
And so I think part of what we're doing, and we'll see, we don't know if it will... You know, how it will pan out, but is to create... First of all, see that community and then listen to the community, and then we're open to changing the content or our videos, you know, are they... Do they adhere to universal design? Are they accessible?
Is this the content? So I think... I don't know. We don't know, and I hear everything you're saying. And yet, I think community...
Is how to do it. Yeah. It... Because because you can use that same niche y idea because if I tell... Listen.
I tell somebody who doesn't have this going on in their life, they're gonna go, oh, that's nice. And then, you know, what are they gonna go? Spend the rest of their life looking for somebody who's gonna, you know, be valued by this? They're not speaking of that. How did it impact your daughter?
Like, how did it actually end up working?
Type one or the videos or...
The the videos. How did they how did they, like... I mean, did you did you give them to her and go, It worked. I knew it. Or, like, you know...
Actually, as... So as a caregiver, I need to be trained first. Right? So I've watched, obviously, the videos because I'm doing most of the social media. So I have learned so much.
And then, yeah, we've showed them to my daughter, and then they hand... Like, so for example, we went on a river rafting trip in Idaho. You know, us and our Garmin, ten day trip on the Salmon River. And as a type one parent and my daughter's autistic, I was terrified. Right?
But I'm not gonna let my fear keep us back. I watched the several videos. My biggest fear was ketones, obviously. Right? What if she goes and, you know, gets ketones?
So I printed off one of the diagrams that Radhika had put in her video, and I brought it with me. So I'm almost like a case study. Mhmm. Radhika is not my daughter's doctor. I watched the videos, and I used the content.
And, yes, I've shown... My daughter has had some other health issues in the last few years. So last two years, unfortunately. So she's just getting healthy again
Mhmm.
And we're gonna start watching them again. But early on when she would watch them, yeah, she understand what type one diabetes is. So visual processing is so important Sure. For her neurodivergent mind, and she thinks in pictures.
So... I I I have to tell you that the number of people who read the podcast and have never heard it is is stunning to me. But it's a it's a populate... There is a there is a population of people who just read the podcast. They they...
I... And I... One of them helps me is like a group expert in my Facebook group. And when... And I knew her for years before I realized.
I'm like, you don't listen. She goes, I've never heard that podcast. I was like, oh, okay. Because that's not how I would do it. So you just don't assume anybody else would do that way.
It's it's really fascinating too. I mean, it's funny you said what you just said. I I describe that I talk in pictures sometimes.
Yeah.
That I paint I paint pictures around ideas because I don't have big words for things. I I know them. Like, if I sat down slowly and thought about something, I'd say something like... You remember earlier when I said, what problem are you solving for? That's the thing I understand.
But when I'm talking, it's not... It's never how it would come out of my I I was... When I said it, I had to stop myself from stopping the conversation to go, I can't believe I used that phrase. So... But when I...
I think that's where... If you can find a way to describe an incredibly complex idea that has a lot of big words attached to it. I I always just say that I've I've I've I've basically boiled diabetes down into T shirt slogans and ones that if you can remember in the middle of the night, you'll be okay. And that's sort of how it goes. You know?
I'm glad you're... I... It's really cool that you're doing it. But how much... You said you don't have everything covered.
What content do you have right now, and what are you hoping to add?
So right now in the 50 plus videos we have in the English channel, we pretty much got the basics down. New onset, ketones, diet, free foods, like all kinds of things. And we divide it into playlists so it kind of becomes easier for you to navigate the YouTube channel. Yeah. But what Molly is talking about is that's all well and good.
Kind of everyone with type one needs to know that. Those are your building blocks. Actually, we also have a playlist on mental health and exercise, which we put together with Ginger, Ginger Vera. Mhmm. So...
Interoception, and what the videos cover29:38
But that being said, for one, for neurodivergent community, we need to probably break it down and rebuild it, in words and formats and, you know, animation that it's more attuned with them. I think right now the videos hit a lot of the high points, but just to make sure to be hit all of them. It could be something as simple as it's too long. It needs to be even shorter. Something like that.
So that's one thing we're looking at. The topics that Molly is talking about is, for example, one is called interoception. So interoception is a concept where how... When you're low, somebody might say, I get cold and clammy and hangry. Somebody else might say, I don't get any of it.
I don't feel my lows. Somebody else might say, no. For me, it's headache and I get sweaty. I don't really get hungry. So that feeling of what happens to you in any situation, that's called interoception.
Mhmm. So with, folks, autistic folks, they may have it, but may... They may not be able to make the connection that, oh, it's because I'm low that I'm feeling this. So our low hypoglycemia video start with cutoffs below the sugar that's called hypoglycemia. This is level one, level two, all that.
Like you were saying, breaking down a complex concept to something that's... Doesn't have complicated words and big words. But for somebody who's autistic, that's not their starting point. Their starting point is more of, have you ever felt such and such symptom? Or do you...
Have you ever been in tune with your body? When that happens, maybe your caregiver or if you're talking to the caregiver, when your child is feeling uncomfortable, maybe pull out their Dexcom and see what their blood sugar is like. That could be their feeling of when they're feeling low. So there's a whole context to that. Another whole context is executive functioning.
Simple things as how do you wanna prepare for your doctor's visit? How do you wanna prepare for your day of school with the type one folded in? What else, Wally? There were other things we were thinking of too. Sensory issues.
Mhmm.
You
know, it's great to dose and then pre bolus and say go eat, and we know that that's not gonna be as straightforward with autistic kids' sensory processing issues. So how how do you go about that? You know, do you do half the dose before, half after? How do you wear a Dexcom if you don't like things on your body? So in our advisory board, have occupational therapists.
We have an expert, Kelly Muller, who talks a lot about interoception. We have a pediatric psychologist. We have a Pete Zendo from The UK who's very passionate about this population. So topics are varied, and in each topic, we'll have different parts of the advisory board come together to help us with the scripting. And so so the...
But you see the... We've gotta figure
out if that needs to be its own channel or just separate playlist on the existing channel.
I have a thought. I don't... I... As you're talking about it, I I keep thinking, like, I think this would be good for everybody. I don't know why this is just for people with autism.
Good for everybody, not just some people32:36
I mean, like, in in a world where everybody wants something, like, you know, boiled down and simple and quick, I don't know that that doesn't work for a lot of people. I... Listen. I've said it out loud a million times. I'm happy to say it again.
I've built an entire ecosystem around the idea of, like, the timing of your insulin. You would think that should be a half a second in a doctor's visit one time. Hey. We're gonna pre bolus our insulin because it doesn't start working as quickly as the food does. But but I could probably show you a diary full of emails that say, hey.
You saved my life. I didn't know about pre bolusing. And I and I think, wow. Okay. Like, is that...
You know what I mean? Like, in my heart, that's, like, such a simple idea. But for all those people, it wasn't. So I don't... I mean, I I would take them...
I would take the branding off of it. Just push it out to everybody. Have you have you considered my crazy idea or no?
No. Not at all. I mean, no.
Look. What you... You know, one hit on it, Scott, is that... So principles of universal design, if you break down accessibility barriers, it's accessible for everybody. Right.
So you you hit it on the nose.
Yeah. I think you're limiting yourself by saying it's for these people because I
I think the
You know what I mean? No. No. I bet you if you showed it to people who had no foot in the autism community at all, I bet you they'd say this is this is fantastic. I'd show this to my little kid.
You know what I mean?
Yep. No. It's interesting. It's it's funny you mentioned that because I think when we started out, we had the exact same idea. Mhmm.
Like, yes, we're making it for neurodivergent individuals, but obviously, that doesn't mean you cannot get on the website and see it. 60% of people consider themselves visual learners. So it could be... It's meant for everybody. So I think how Molly and I look at it as neurodivergent first, not neurodivergent only.
Mhmm. Okay. When we went around saying that, actually, couple of people gave us a feedback like, yeah, but that's not niche enough. Like, I don't know what you're selling anymore. So we're like, no.
This is for everyone. They're like, no. It was very fascinating because we said this for everybody. They're like, no. It's...
It needs to be a little bit more niche so you find... You know, we won't think about cornering a market that nobody else did.
Who said that? What what was their background?
They were, in the type one diabetes community for decades. Not a doctor or educator of that sort. Just a passionate
parent. Can I tell you something? I... Don't listen to anybody. Just don't don't...
Listen to yourselves and... Listen. I I... I'm gonna give you, like, a twenty second, like, history lesson here. I started making this podcast January 2015.
A hundred and fifty podcasts that didn't last35:12
At the time I started making it, I don't believe there was another diabetes podcast that existed. The ADA probably had one six months before me, but if it helps you to know that in the last twelve years, they've got as many downloads as I've had in the last six months. So it's not like a widely listened to thing. No no shade ADA. Like, I...
I'm just saying, like, them for perspective. Okay? After I started making one and I got an ad, a lot of people had the bright idea to make a type one diabetes podcast all of a sudden. And then they started coming and coming and coming. And since then, I stopped counting years ago, and counting is a...
I I sat down one time and looked. But there have been over a 150 people starting and failing making a type one diabetes podcast since I started mine. And there are still some that exist, and they're lovely. And I don't... I...
Some of the people I know and some of the people I don't... They don't reach people nearly in the numbers that I do. And every one of them back then in that space... Because the blog space was huge and every... They all would point fingers at me and tell me, you're doing the wrong thing.
You're not allowed to say that. You shouldn't be doing this. You're gonna hurt somebody. This is the way you should do it. Blah blah blah.
Where are they all now, Radhika? You know what I mean? Okay. And so I knew what I was doing was working. I saw it working, and I said, I don't care what anybody else thinks.
I'm gonna keep doing this thing. And it keeps going and keeps going. I do things sometimes, and it blows up in my face. And I I go, okay. Well, I won't do that again.
And I do things sometimes that I don't think anybody would else would do. And I think specific to you, in the last couple of months, a new page that I put on my website has a thousand clicks. It's not a lot, but it's a... But it's not a... It's not it's not nothing.
Right? This one page is just a jukebox of kids songs made made from my diabetes content. So they're, like, sixty, ninety second things you'd put on in your minivan for your three, your four, your five year old to hear about pre bola sing or taking my meter with me or that kind of stuff. Right?
Brilliant.
Yeah. Brilliant. Yeah. Thank you.
Yeah.
I know, by
the catering me is like,
Molly, thank you. But I know.
You're welcome.
Okay? I have no I have no shame. I'm a genius. That's fine. And so You are.
No. No. No. No. Stop.
And... But what I learned was is that my content... Like, AI opened the world up for me. I was like, I have 2,000 episodes of conversations. Stop thinking about them as conversations and start thinking about them as data.
And then once I thought about them as data, I was like, oh, snap. I could turn that data into poems. Poems. Oh, that sounds like a song. And I was like, okay.
Kept it in the back of my head. All of a sudden, about six or eight months ago, I'm flipping through TikTok, and people are turning their text messages into songs. We've all seen this. Right? And I was like, oh, how'd that happen?
That was definitely AI. I can't sing. These people can't sing. Woo. I went back.
I was like... I said, take the bold beginning series and turn it into children's songs to help them understand their thing. And then I sat and wrote them and changed them and, you know, I I massaged them around so they didn't feel too robotic. I might have put out hundreds of versions of them until I got it to where I was like, oh, it doesn't sound like a robot singing. Like, it sounds good.
You know, it's jingly. Like, it'll work. And then I thought, oh, I'm gonna put these online and people are gonna roast me. And I swear I thought, I don't care. And I just put them online.
Right? And when I put them up there, what I got was some people said, oh, you use an AI. You're gonna burn the world down. And some people said, this isn't a real person singing. But you know what most people said?
Hey. My kids listening to these in the car. Thank you. You've been... I...
People have been asking me for years, make content for kids. And I couldn't think of anything that I was good at that would interest the child. And so then when when I did, I was like, do... So my point to you is I wouldn't listen to anybody. I would just do exactly what you think is right.
You're the only one doing it, by the way. I love people who will tell you what to do all the time. Go do it yourself. Stop telling me what to do. I don't see you getting off your ass doing a thing.
You got a ton of ideas for me. Okay? You... You're so smart. Go help people.
But, like, I like, you guys have motivation. You've got a good group around you. You've got a terrific idea. I wouldn't listen to a person about anything. I really would.
Noted. Yeah. Yeah. I'd say go for it. I...
Please. I... You're here. You're doing the thing. You you know what I mean?
You're the experts on it. You made yourself that, that, really. Like... So Yep. Till somebody comes and takes it from you.
I don't know. You need you you need you need this much of my narcissist, Emiratika. Just this much of it. If I A little bit. If I could just put it like a cookie for you, you could, like, chew on it a little bit every day.
You'd be fine. Just get out there
and tell...
Go ahead, Molly.
I don't think we're in this space to... I don't think we have the anticipation that we'll be huge influencers and, you know, we'll have... Because we're such... We're targeting such a small population, but I think, like, you're putting your... Those songs out, and it helped a certain amount of people, and that's huge.
This is why I brought up....
Within the type one community is huge. Yeah. So... This is why
I brought it up for you because those songs are not gonna pop off and be some crazy thing like the podcast is. That's not what's gonna happen. But it's gonna help those people. It's just like the ASL videos. It's gonna help the people that it helps.
And you put... You you know, you just light a bunch of little fires all over the place, and all of a sudden, it's gonna be daylight. So I think you guys are... I would just... I don't know what to tell you, but keep going.
Like, it's awesome.
Thank
you. Yeah. Yeah. What's the website?
Animat1d.org. Animat1d.org. Okay.
Yeah. I assume you'd like it if people would give you money.
We do
not. Why would you mention? Stop it. Go give them money. What are you doing?
And... But but seriously, how long you've been at this now? Like, since the two of you had that conversation and you turned it into a a... An org, how long has that been?
January 2024 is when we registered as a nonprofit. May 2024 is when the YouTube channel went live.
Oh, you're moving.
November, December 2024, the Spanish channel went live. Mhmm.
Website's great. It's easy to get around. It's lovely. I mean, takes you to the YouTube channel nicely. Like, it doesn't mess around.
It's very colorful, easy to use. Like, it's delightful. Really, it's... You have a lot of videos too already. Look at
you. Yeah.
Our goal... What we have in our mind is, we'll see, is to become, like, the Khan Academy of t one d. Yeah. So that's that's our goal.
I think this... Are you... So what's the what's the the most important next step? Is it more content? Is it more distribution?
Is it more people working with you? Like, what what do you... What's your pathway look like?
So I think the first main thing that we're focusing on right now is to almost, like, audit our videos and make sure they're neurodivergent accessible and create all the content we talked about. So pulling back one step, Scott, so what you were saying, I think Molly and I are completely with you on the same page that these videos are for everyone. Mhmm. But I think what messaging got lost is the neurodivergent community didn't didn't think it was for them. So it was almost like getting them out of their, you know, shell like, no.
The message that got lost42:35
No. No. It's for you first. So you get on it. It's a happy side effect that is for everybody else.
Mhmm. So I think that's what we began to notice. Like, when we would take it to friends and families at Molyneux, they're like, but is that for me? Because they're so used to thinking everyone is everyone who's neurotypical. So, like, no.
It's... So I think that's why we need to change the messaging so they are the ones who get on the website because that's where the story started.
Yeah.
So that's why coming back to your question you asked me now, the main thing we have is this advisory board and we have a, we have a few families on the advisory board who are gonna help look at our videos, tell us what... Which videos made... Videos need to be made. So what we are in search of is adult individuals or families of children who are neurodivergent and have type one who'd like to be a part of that focus group where we could say, you know, first get feedback from them. How...
You know, like, almost like their lived experience feedback. And then we take a video to them and they're like, this sucks. I don't know if you're allowed to say that on your podcast.
We... Trust me. We're being polite on this podcast right now. You can say whatever you want. Don't worry about it.
And
they kinda tell us, like, you know, I would love it if they show it to their child or the adult sees it and says, this is why... Where I'm getting stuck. And because I'm the one doing the animation and the scripting, we take it back, take it down, put it back again, and they tell us again what they think. So I think that's one piece we're missing. Second piece, like you were saying, we need funding because not many people would love to be volunteers.
Some of them would actually like to be paid for their time.
No kidding. People are hungry, are they? Yeah. Do they do they want the heat on? I...
Well, listen. I could be... I would be... Happily, when we're done, I'll share document a with you. I spent about two years collecting people's struggles in a list and then distilled it down to...
I think it's, like, thirty, forty ideas, right, that people, like, kind of universally struggle with with type one diabetes. I have a, a page on my website. It's it's juiceboxpodcast.com/jpfaq, I think. It's an FAQ page. But what it really is is it's all of my content mapped through those struggles and through the top 250 most googled type one diabetes questions.
So I took those questions and these struggles. I put them together, reverse engineered the search function so that it it it knows what people are gonna ask about. So you can plain language ask, and then it routes you to different episodes of the podcast.
Oh, nice.
Yeah. I appreciate the face, Molly, because I know when you're talking to me, you think he might be an idiot, but then you hear something like that and you take it.
Website, and I went through it. When you click start here
Yep.
And then what's hardest right now as a caregiver, I was thinking this is brilliant.
No. No.
No. Then I would just add a category. My child is neurodivergent.
Oh, I don't know if I have content for that.
Well, let's make it.
Well, that's no problem. That that... That's just getting the right per... So I'll tell you that... Listen.
I I feel for you around making content. I I use this as an example all the time. I do mental health stuff with a a licensed marriage and family therapist who has type one diabetes for almost four decades. But I went through a lot of therapist conversations before I thought, oh, that's the one I wanna do it with. And then she had to be interested.
Moderating a space you can't see into46:04
And then we... And now we do stuff all the time together for years. But it took me years to find her, you you know, because you can make the the thing about content creation, maybe not so much for you as for me, because mine's more conversational. But you can put the the information. It can be perfect.
I mean, Eratika, you know this better than anybody. You can give personal list. This list will save their life. Good luck getting them to read it. Good luck getting them to understand it.
Good luck getting them to hold on to it to refer back to it. Like, you have to find a way to say the thing in a way that sticks. And Mhmm. That's not that's not easy. Like, that part's that's the hard part.
And, you know, so my point is around neurodivergent stuff. Find the right person. I'll I'll make a I'll make a... I'll make 30 episodes with them. You just gotta find the right person.
The same thing around... I still struggle with celiac. I'll tell you right now, I would love to have more celiac content. Every time I talk to somebody, they get a little... I don't wanna use the wrong word.
They seem butthurt that people don't understand celiac. I said I didn't wanna use the wrong word, then I just used the only word that was in my head. They... The... I think they're more they're more insulted that people don't understand than they are interested sometimes in spreading good information.
And then when you give them the opportunity to spread good information, they don't have the background. And so I struggle to find somebody who could... And now maybe someone will hear this and go, I know. Well, send me an email. I'll make a whole series about celiac with you.
Right? I've did it with thyroid, and you have no idea how many people I... Emails I get back from people are like, oh my god. Like, my life is so much better now because you told me about, like, thyroid problems. And so, like, I'm happy to do all that stuff.
Finding the person is the hard part.
Yeah. Yeah. Especially in this space. So... Yeah.
Yeah. Yeah. Well...
We'll find them. We'll find them.
Did you hear Molly said, especially in this space, she used four words to relay so much pain. And, like, she's... Because why? First, I don't wanna get you in trouble, but it's a very personal thing to people. And when it's not done the way they think it should be done, they think it's being done wrong.
Right? And then they... Their back gets up about it. And then what happens? You you end up with a thousand different factions of ideas about how things are supposed to go.
Am I getting that about right? Yeah.
Yeah. Well, I think in the autistic community... Mean, the saying is if you've met one autistic person, you've met one autistic person. Right? So all our experiences are so diverse and heterogeneous that...
Yeah. We're... We will have to sift through a lot of qualitative data to figure out what is the experience and what is the need.
So... And how do you cover the most people because you're not gonna cover everybody?
No. No. Yeah. So unlike Scott, to your point, you have an extremely popular podcast and it's... You've had it for eleven years.
And even you said you don't have much for neurodivergent content. So... Which is where we're like, this is a twice invisible population. Mhmm. And and that...
If that's where our journey started, we wanna... I wanna stay true to it. Yeah. So... And that's why we had to rephrase our mission statement to use the word neurodivergent because the old version which we had, which was also a good mission statement, it was just not hitting the right population.
So when we were putting the advisory board together, they were like, yeah. I didn't realize that's what you're doing because with your website, I didn't... I wasn't getting that message, that this was meant for my child or my patients or my family. So that's why we had to kind of rephrase everything.
Well, this is for me. It's certainly... I'm not speaking for the two of you at all. And... But I will tell you that my experience has led me to believe that one of the reasons the podcast is popular, and this is gonna sound crazy, is because I don't have type one diabetes.
So I don't have a perspective that's personal. My perspect... My perspective is more, like, just functional. Right? And then I don't know what it feels like to be low.
So what I'm telling you, I would need a thousand carbs here if I was you. I don't have any of the, like, you know Yep. I don't have anything behind it. I've never been low, like, in the kitchen going, I'm just gonna keep eating because I'm afraid I'm gonna die. And so...
And I don't dismiss any of that. I'm just saying I don't come from that perspective. So I always think of it as, like, I have a caring concern. I think I have a reasonable understanding, but I have a dispassionate perspective. And I think that's what helps.
So when people are telling you what they want, they've gotta remember that there's probably some core truths that cover everybody. You just need to cover them, and then they can infer the rest. You don't have to give them every ounce of detail. You just have to give them enough to get them going and get them going in the right direction. That's what's worked for me so far.
But but it's... I... Listen. It's not tough. It's not not tough.
I have plenty of people who think that I... The... What I say is wrong or the way I say it isn't right or I should say it a different way. I have... You know, I try very hard not to listen to anybody but still take in good feedback at the same time if that makes sense.
I would also say, disconnected from that, I have a small but powerful neurodivergent population inside of my Facebook group.
You do? I've seen them. Yes. And and I'm cheering them on.
And it's it's it's an interesting moderation issue because they don't run around telling people they're neurodivergent. I just know they are from having to have, at times, been like, hey. I pulled your comment down because, like, be nicer Or, like, or, like, hey. You're missing the boat here, like, on this or something. Then I'll get a note back from this.
It's like, look. I got autism. I'm doing my best out here. They're like in a... You know?
And I don't know another way to say this. Like, visually, I wouldn't get that from them. Like, I didn't look at them and think, oh, I see that. So I don't have any way to, like, to know that, but they'll reach out and tell me. And then I'm in the weird position of when I'm moderating, like, I know these people have this going on.
It's not mine to tell other people. And sometimes people will message me and be like, hey. This lady is being rude to me. And I'm like, she's not being rude. And, like, I got...
Try... Like, I'm trying... Like, it's a weird space to try to massage, but I have found it worth the effort significantly. Also Yeah. Often their feedback is, like, spot on.
It just sometimes can lack grace or I don't
know coding. Yeah.
Yeah. Whatever you wanna call it. Exactly. Yeah.
It's Direct.
Yes, Molly. It's very direct. And and and at the same time, I don't want I don't want them to feel discouraged. I don't want the other people to... Because what I've learned too about that populate...
About the the diabetes space in general inside of that group is that if you just make it a friendly place where people can come in, they give to it and take from it what they need and what they want. And it helps everybody. So you don't want to... I don't wanna push anybody out of it.
Yeah.
But I have been seen as defending a jerk publicly, and I just bite my tongue and don't say anything Mhmm. Using this story as my as my guiding light. At some point, the Philadelphia Eagles were coached by a man named Buddy Ryan. They had a wide receiver named Chris Carter who was really good. He was very good down at the goal line, so he caught a lot of 10 yard passes for touchdowns.
One day, Buddy cut Chris Carter. He was the leading touchdown catcher on the team, but he cut him. And when the media came to him and said, why could you possibly have cut this guy? Buddy said, all he does is catch touchdowns, which is a ridiculous statement, and everyone knew it. And for years and years and decades, you could not get a different answer from Buddy Ryan about that.
And one day, Chris Carter was interviewed, and you can go find it. And what he said was, I had a serious drug problem, and Buddy Ryan saved my life. Mhmm. And then never told a god soul ever. And that's how I moderate the neurodivergent population inside of my group.
I just... It's between me and nobody else. And that... And if I gotta take crap over it and I gotta stand at 25 press conferences ago, he just catches touchdowns, which is not a reason to cut somebody. I know you two ladies maybe not huge football fans.
But, like, O'Malley is. Okay. Yeah. But that is not an excuse you would use for cutting Chris Carter at any point in his career. And and then to look fifteen, twenty years into the future and to see that interview with him...
Because I always thought that was amazing. Like, I... There was part of me that was always like, something else is going on here. I'm never gonna know what it is. But one day when Carter came out and talked about it, Buddy was dead by then, I think.
And all I could think was, like, what a good guy. Like, what an awesome thing to do for another person, you you know, and and to see the gratitude on his side. Anyway, it's... That's how I feel when I'm doing that there.
Right. Scott, that's awesome because you're giving... It's a very personal decision to reveal any part of yourself. Right? So to reveal someone is neurodivergent or autistic or this, and so you're giving agency.
It's not for me to say. Yeah. You know?
It's someone else's story, so that's awesome.
And so why did I tell that here? It's maybe so some of the people listening who think I'm a jerk could prop... Might go, oh, maybe things are going on that I don't understand. Yeah.
Be curious.
Yeah. Yeah. Yeah. But that's a nice way of saying don't talk about things unless you know. Molly, you're you're you're in a good way of talking.
Go ahead, Pradek. I'm sorry.
Yeah. No. No. I think how... And I was thinking about when you were saying you don't have type one.
You know, I don't have type one, but difference between you and me, I don't have any personal connection with type one. Mhmm. But where I sit in my clinic, I have all these wonderful families who I care for, and I feel like I'm basically crowdsourcing their lived experience. Yeah. So, like, I think that would give me a unique vantage point.
So when we make a video about anything, you know, with, like, say, one autistic individual, I could kinda put things there that I hear or I see in the clinic. So somebody, you know, somebody who's got an autistic child, they're like, oh, that sounds like something I'm going through. So unlike yours where it's, like, all front and center, which is also great, they need a safe space to talk. I find that, you know, kids and adults might see the video and almost feel like in a nonthreatening way, see like, oh, yeah. I do that too.
But not have to worry about it because now it becomes a little more comfortable
Private.
Because it's happening to a character on the screen, not to them.
Yeah.
But I think that's what we're hoping to do. Like, you know, take the blinders off, of normalize it and let people know, like, we hear you. You're not the only one going through this.
That's
weird.... Are others who are literal with their feelings and come across as blunt, but that's just who they are.
That's how I think about the more conversational as... Conversations inside the podcast, those episodes. Ones where people will say, like, you didn't talk about diabetes much. I'm like, that lady talked about five real foibles in her life that you are probably right now mapping back to yourself and going, oh, when she said it, it sounded ridiculous. When I do it, I think it's reasonable.
Maybe I should consider that for another second. Right? And that is another great way. You can't always tell somebody they're learning. That's that's not valuable.
Sometimes it just has to happen in front of them. And my daughter said to me the other day, she goes, you came downstairs. My friend was here. And I I won't give the details of it. She goes, you said this, this, and this.
And she's like, I know why you did that. And I was like, oh, yeah? So what do you think? And she told me and I like, oh, that is exactly why I did that. Because I was trying to get her friend to think about something without thinking about it.
So I said something about myself in passing and then never leaned back on it again. I think she'll get it or she won't. Right? But, yeah, that's just... I think it makes a lot of sense to do things that way.
Mhmm. I will tell you too. There will be people who listen to this, and they'll... And I'll get a note that says, you didn't let those ladies talk enough. You talk too much about your podcast.
You... Let me talk to them for a second. Everyone would have shut this off twenty five minutes ago if I didn't do this. And that's the other thing that they need to understand that if I say this is an episode about animating neurodivergent type one content, five people are gonna click on it. Like, you don't...
Like, it's hard to, like, you you... This part of it's important. Like, right? Like, I know that you don't know you're being manipulated while you're listening, but I am manipulating you while you're listening into thinking, I wonder what dumb thing this guy is gonna say. Let me hang on for another five seconds to see what happens.
Then I let you guys in, and you say something thoughtful. They hear that by mistake, and then wait for me to be stupid again. It's a... Listen. It's an art form.
The Molly, it's a... It's an art form. I'm just gonna tell
you right
now. But...
But now the secrets are people most are.
No. That's the great thing. Don't forget. It doesn't matter. I I take hate listens just the same as happy listens.
I don't care. All the downloads count the same when I'm cashing my checks, so you all know. What am I not asking you about that you would desperately want people to know about? I wanna give both of you a chance.
What they actually need59:15
We didn't expect that question. Well, let's see. Videos... Our videos are bite sized. They're a unique space because they're made by me, so it's all medical...
Medically accurate, but it's also folding and lived experience. So it's probably the own... And it's comprehensive. Mhmm. So our hope is one day if you're like, I have a question about this.
Where can I learn about this? You can land on our website or another YouTube channel and find it. That's our ultimate goal. So pump sensors, devices, mental health, exercise, something with interception, like anything you have in mind, it should be there. If you don't find it there, drop us an email.
Let us know what's missing, and we'll make it happen.
Nice. Molly?
I would say if you're autistic, neurodivergent, ADHD, reach out to us. Contact at animate t one d dot org, and we would love your input. So... Awesome. Yeah.
We want to hear from the community, and we want you to be seen and as much as we can as to pretty determined women support this community.
You see how lovely these two ladies are? I just wanna be clear to the people listening. I don't care what you think at all. I'm just gonna do whatever I want. So I would I would never change the podcast based on your impact.
And that's why this is fun.
No. I'm just I'm just... I... First of all, I'm joking about that. There's one more...
No.
There's one more thing that they should know that it's entirely volunteer run. We don't have any paid employees. Mhmm. And all the money that's gone into it has been personal donations, a lot of credit card swiping. So just to give them a sense of how this has been all put together so far.
Good for you. Mhmm. That's awesome. Do you think anybody... Has anyone shown a desire to get behind you?
Helmsley Foundation, something like that? Anything there? Helmsley could maybe just, you know, just empty the change in their pockets and keep you going for a couple of year. Anything like that at all, Rodhika? Have we heard about that?
I know. No. No. Because Hensley actually on its website says large institution backed. So...
And I think that's where we kinda run into trouble. In the beginning, I... We realized it because we just didn't have enough of a footprint, but now we do. We have a couple of years worth of tax returns and impact reports that we can share. So I'm hoping that the donors with deeper pockets will now kind of pay attention.
Because I understand if you wanna cut a big check, you wanna see something. Yeah. So now I think we've got a couple of years worth of something. Yeah. So now we're hoping now we're hoping to reach out with a little bit more of substance.
Okay.
Mhmm.
How about, devices that are good for are there, like, a... Is there a device that neurodivergent people find more palatable? Like
As far as...
I don't know. A pump, a CGM? Is there something that... Do you know what I mean? Like, that you could sell some ads or something like that?
Or do you know what I mean? Like, get some backing that way. I don't know.
Yeah. We're open to that.
And usually, Omnipod tends to be
Yeah.
More popular with, you know, autistic sensory individuals than Keith Slim or any of the tubed ones. So both of them. Right?
Yeah. No. That would be a lovely thing for them to be involved in. It's not... It's a...
I would imagine a fairly low dollar endeavor, and they could, you know, get get into a population where maybe they're not thinking about it. I would think all companies should be thinking that way. You you know what I mean? Like Yeah. I...
Especially... Listen. I'm I'm I'm no professional. I also didn't go to college, Radhika, so don't judge me. But I am in this space a lot.
Why are singling me out there?
Because you... Because I'm assuming you went to college for a thousand years. That's why. And...
Two thousand.
Which one's better here? Right?
I have no idea. But the way... But look at the niche, aspect of it. Right? Like, I I know you and I were...
The three of us were talking about this before we started today, and I haven't put any of this public yet. But I've been digging in through something called PodScan, which is boring and nobody cares about. But they have APIs that you can use to look into podcasts, like, from the inception. And this podcast that I make, which is, to your point earlier, Molly, it's not even health. Right?
It's not health and fitness. It's inside of health and fitness. It's inside of medicine. It's diabetes. It's not really diabetes.
It's inside of diabetes. Right? Like, I'm a niche within a niche within a niche within a niche. And I am one of, like, fewer than 200 podcasts that have been going as long as I have been, as many downloads as I have, and as consistently as I have been. I also built a massive online community around the whole thing.
And, like, when you're selling things, talking about people helping you, you don't need to reach 15,000,000 people to sell to people with type one diabetes, your pump or your CGM or something like that. 500 of them, a thousand of them, that's a lot of people. And it's not a heavy lift of... I mean, I'm just saying, make something like this easy for these ladies. Like, let them get this content out there.
You'll sell your pumps. Like, you know what I mean? Like, they... I mean, those pumps aren't cheap. They don't have to sell many of them to make back the money they're giving you.
Like, let's go. Somebody think outside of the... I'm tired of being so smart, Radhika. I need somebody else to jump in and get involved. Okay?
I'm getting old. Can't I can't do this forever. Someone else has gotta start thinking. It can't just be me all the time. Okay?
I'm tired. Look at me. I'm I'm dying here. I'm so tired. Okay?
I need the bags under my eyes. It's ridiculous. Molly, don't laugh at me. You're out
bright eyed.
You too haven't seen the sun in six years. You don't know which way is up. What are you taking? Ten ten thousand IUs of vitamin d a week? What are doing?
Four thousand. Okay. Alright.
What's up, dad? Go outside. Go for a walk. Don't get killed by... What do you have?
Bears up there? What do you got up there?
We don't have bears.
No bears.
We don't. I mean, if you go out in the woods, but...
Yeah. Yeah.
No. We have boring garter snakes.
Garden... Can...... Ducks. Oregon ducks.
Stop it.
This is... Football ranked number two.
Is that what you meant when you said football? College
football. I grew up in Los Angeles, so I won't tell you who I'm a fan of.
Oh, that's so sad. Are you a Rams fan? No. Not even......
Should be because Justin Herbert. But...
Yeah. Alright. I'll just test you here. Would you prefer the Angels or the Dodgers?
Oh, ask me where I'm going Saturday.
Alright. You're going to a Dodgers game, aren't you?
I'm flying down to Santa Barbara, and I'll hang out with my girlfriend and go to a... I grew up going to both Dodgers and Angels games.
Well, now you've turned everyone off because they think you've bought baseball team, and now they don't wanna help you anymore as I say.
It's more hanging out with my friend. I hope maybe they'll win.
They might
not, though.
That sounds lovely. I would love... I'd love to go to a dodgers game. Okay. Alright.
You guys are awesome. I appreciate you doing this very much. Would you hold on for one second for me?
Yes.
Yeah. Thank you. Back of an episode today, wouldn't you say? Let's thank Dexcom and the Omnipod five for sponsoring. That's right, my friends.
We were sponsored today by the Dexcom g seven. Dexcom.com/juicebox. Head over there right now. Look into that fifteen day Dexcom g seven. Fifteen days is a long time.
It's like half a month. Don't check my math, but I'm pretty sure I'm right. And let's also thank the Omnipod five. My goodness gracious. Omnipod five tubeless.
That beautiful algorithm's updated now with that new 100 target. Get in there. Find out more about it. Omnipod.com/juicebox. You You want some tubeless insulin pumping?
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Take a deep dive, take a sip, and discover what our community finds most valuable on the journey to better diabetes management. For more information on small sips, go to juiceboxpodcast.com and then go... Oh, actually, we changed the website. Let me see. Go to juiceboxpodcast.com.
And from there, there's these two little lines on the right side top. That's the menu. Then click that, then click series, then there's pro... There's small sips right there, pro tips top, all beginnings, bolus four, s... There's a lot of them there.
There's actually a little search there too. Could you just type small sips into the search? Oh, wow. That search works great. Look at that.
And then you could go right to, like, all results for small sips. Oh, and that takes you to the FAQ. You should check out the FAQ page too. I think that's juiceboxpodcast.com/jbfaq. Seriously, that thing's amazing.
Actually, whole website is... I mean, have you, like, seen it? You should you should go check out the website. The website rocks. It is a potpourri, a never ending cornucopia of support for you and your diabetes journey.
That's right. It really is. What else we got over here? Oh, I don't like the way that works. I'm gonna fix that.
Note to self. Change the change the masthead on the frequently asked questions page. Yeah. I don't like that. Fix that.
Oh, Claude. Oh, hell. I forgot to say thank you. Thank you so much for listening. I'll be back again very, very soon.
What is that noise? Stop it. Stop. Can you hear that? It's my chameleon squeaking.
Are you squeaking? What are you rubbing the branch against the... Don't tell people I have reptiles. They'll think I'm weird. Thanks so much for listening.
I'll be back very soon with another episode of the juice box podcast. Look at me. Get all deep in there with another episode of the juice box podcast. You can hear it. What was that?
Oh, I'm getting alarms and alerts on my phone. I was gonna get real deep and tell you about the juice box podcast.
Read the full disclaimer
© 2007–2026 Juicebox Podcast. All rights reserved.
#1976 Founder Story: Brave One
Founder Story: Brave One
Brandi's daughter was diagnosed at three. She built a nonprofit that matches kids with type 1 to older mentors who have it too — and she is still figuring out how to run it.
Jump to a moment
- Her daughter was diagnosed at three, and the nonprofit came out of it. Brandi describes the bed-wetting she first read as acting out after a new baby arrived, the hospital photos of Bella looking skinny with bags under her eyes, and the moment it became permanent — getting home with bags of prescriptions and a stack of instructions. Brave One now serves families across the country.
- The whole idea is a kid who has already lived it. Brave One matches children with type 1 to older mentors who also have it. Mentees have to be at least five, matches start with a six-month commitment and can extend, and the pairing is deliberate — they ask mentors what kind of child they'd match well with. Brandi's point is that the conversations are mostly not about diabetes; what matters is being with someone who understands without explanation.
- Her own mother has type 1, and deliberately held back. Rather than hand down decades of her own experience, Brandi's mother recognized that a toddler's diabetes in this era would be nothing like her own and let the new information lead. Scott's follow-up about whether that was uncertainty or wisdom gets a thoughtful answer.
- The unglamorous half of running it. Background checks for mentors, liability insurance because you're introducing people to each other, welcome boxes for new mentees, grant applications in a hard funding climate, and a fiscal sponsor handling the paperwork she admits she couldn't face. Her own summary: they are building the plane while flying it, and she and her team are putting in their own money as well as their time.
- The back half turns into a long, candid conversation about reach. Scott talks at length about how little organic reach social platforms give anymore, inflated follower numbers, people who charge to coach you into becoming an influencer, and his own rules — he has never taken money from a guest to appear, and advertisers get an episode as part of their contract rather than paying for one separately.
- Brave One — Brandi's nonprofit — mentor matching for children with type 1 and their families.
- Diabetes Pro Tip series — Episodes 1000-1025 — settings, insulin timing, and food impact.
- Juicebox Podcast Facebook group — The private community, free to join.
Every word of the conversation
Hello, friends, and welcome back to the juice box podcast. If you don't love today's episode, you can have your money back. You should not, in any way, shape, or form, take anything you hear on the juice box podcast. As medical advice, I'm talking about medical advice, regular advice, any kind of advice. This is a podcast.
Cold open & sponsors0:23
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My name is Brandy, and I am a t one d mom in the Houston, Texas area. And my daughter was diagnosed two years ago, tomorrow. And because of her diagnosis, I actually started a nonprofit called Brave One in honor of her, and we serve children and families all across the country now. And I'm excited to to chat more about it.
Bella's diagnosis, and starting Brave One2:47
That's awesome. Well, I'm I'm excited to learn about it. So, Brandy, you have more than one child, or is she your only?
I do. So my daughter, Bella, she is my type one warrior, and she is the middle child. She's my my wild child. She lives up to every stereotype that a middle child has. But I have, and my oldest is seven, and I have a younger one that's two.
Wow. So... And how old is Bella?
Bella will be five in October.
Seven, five, and two.
Yes.
Oh my gosh. Well, you know what? I would have told my wife. Let's hope they're stupid so they don't wanna go to college because I don't know I don't know how we're gonna pay for that. Meanwhile, by age, you don't have to go to college.
You can be smart and not go to college. I I understand. Seven, five, and two, and she was diagnosed two years ago. So she was three. Your oldest was five.
And were you pregnant or had
So she was four weeks old at the time. So I have pictures of her in her hospital bed looking so sick, so skinny, bags under her eyes, and I have bags under my eyes because I'm trying to take care of her. But then I have this three, four week old baby that I'm nursing and trying to care for too.
So Oh.
That time period was... It's just a blur. Like, I cannot remember that time at all.
Yeah. Your husband stayed? That's brave of him. I... They've been like, if I abandon him at a hospital, I think someone will take care of them.
I I have to go. Jeez. You Oh my god. You probably felt the same way for half a second. Like, can't...
Like, I can't really do this. Right?
I... The thought immediately crossed my mind because you're in the hospital. They're throwing this information at you. And it's weird because you're in a daze, and it didn't really hit our family that this is our forever until we got home with the bags and bags of prescriptions and all these instructions. Because I thought, like, oh, okay.
We... We're discharged. We should go home. And immediately, I go back to how our old life was, and we could just go back to doing what we what we used to do. But then you get home and, like, reality hits you all at once.
Like, oh, our lives are actually going to be different forever. So we went through a grieving process for for a while.
Yeah. I remember the, like, leaving the hospital, getting back to the to the house. We were on vacation, so it wasn't yet... Like, nothing was normal yet. Mhmm.
And then a couple of days later, we get back to our house, and, our family, like, showed up at the house to... Like, they they did every stitch of laundry. They cleaned the place down to, like... You know, they they toothbrushed the... They tried to make the house, like, not need anything.
You know? And so you get there and you settle, and then that's when I remember it, like, hitting me. Mhmm. Like like, we were still and quiet, and then I realized, like, everything I was thinking of doing felt like it changed or was impossible or needed something that I didn't understand. Like, every moment felt different after that.
Exactly. And it's it's crazy because I remember talking to families and just going online and doing all this research. Like, how do people do it? And I was like, this this is impossible. I'm never gonna be able to adjust.
I got angry at families that were saying, oh, it's okay. Like, I was in your shoes. It actually does get better. And I'm like, how does it get better? These people are insane.
Like, this is crazy. And two years later, I can honestly say that it does get better.
Yeah. But it's interesting that when somebody says it to you, you're like, I can't process how that could be.
Exactly. I could not even think about the next day, the next hour, and they're telling me, oh, it gets easier. And I'm just like, these people are crazy. It does not get easier.
And if it does, maybe we could speed up the next two years and get to that and then Exactly. Slow back down again?
Well Exactly.
Really is something. So how does the division of, like, care get split up? She's obviously too little to take care of herself.
Yes. Yes. It's so tough at this age. So she... She's getting a lot...
So we're finally at the point where she's not ripping off her devices. So we've... In the three years that... The the two years that she's had it, I can count on two hands how many... How long her Dexcom has lasted the full ten days and her Omnipod the full three days.
Like, it's it's constantly pulling off her devices. So we're finally at a point where she keeps her devices on. So that's that's all I expect from her is just, hey, Make sure you put your devices on. Keep them on. And, also, let me know if you're gonna get a snack.
So she's constantly sneaking snacks. And I let her know, like, we don't restrict. We do not restrict. We we have the same diet we had before diagnosis. And I tell her all the time, you can eat whatever you want to eat.
You just have to let me know first so that we can dose you. So I try to keep it, minimal responsibility because she's so young, but that thought crosses my mind all the time as she gets older. Like, how much am I gonna give her when she's in elementary school, when she goes to middle school, high school? I hear horror stories all the time about how scary it is with teenagers, and I'm just like, oh gosh. I'm not ready for that time.
How, how did the devices end up coming off? Did did they get knocked off, fall off? Does she pull them off physically?
She pulls them off physically. So lately, she has just been complaining that they're itchy. And, of course, I can't say, like, oh, you're lying because I don't wear the devices. And I hear from a lot of adults that are diagnosed that they say yes. Like, honestly, they're very itchy.
And so she says they're itchy. It's uncomfortable. She is very active. So a lot of the time, like this morning, she was running around the house and they got knocked off by the, coffee table. Mhmm.
So... And then she swims, so it's just they're always
falling off. But but as she's getting older, she's more tolerant of them or able...
As she's getting older, like, even today when she knocked off her device on the coffee table, she said, oh, man. I didn't... I forgot this was the leg my pump was on. And so when she said that, I'm like, oh, wow. She's actually starting to be more aware of where her devices are, and she's being more careful.
That's the first time she's ever said something like that. So, I'm thinking she's becoming more aware in that, hey. I need to keep this on so that it can last the full three days, and I'm not getting poked.
Yeah. This thing doesn't get knocked off. I don't have to put another
one on. You know? Exactly.
That's awesome. I used to hate ordering my daughter's diabetes supplies. I never had a good experience, and it was frustrating. But it hasn't been that way for a while, actually, for a number of years now because that's how long we've been using US Med. Usmed.com/juicebox or call (888) 721-1514.
US Med is the number one distributor for Freestyle Libre systems nationwide. They are the number one specialty distributor for Omnipod Dash, the number one fastest growing tandem distributor nationwide, the number one rated distributor in Dexcom customer satisfaction surveys. They have served over one million people with diabetes since 1996, and they always provide ninety days worth of supplies and fast and free shipping. US Med carries everything from insulin pumps and diabetes testing supplies to the latest CGMs. Other autoimmune in your life, does anybody else have something going on?
Does she have more than one thing?
She doesn't. So she's just type one. Fingers crossed it stays that way. My mom is actually a type one, so, it is genetic. She had...
She was diagnosed as an adult, and she had the typical story of misdiagnosis where she was diagnosed as type two first, and then eventually, it became a type one diagnosis. So when Bella was diagnosed, I was like, oh gosh. She's showing signs of diabetes, but I was in such denial. But it it is genetic.
You saw it coming, but you you tried not to think about it?
I made every excuse, and I I still kick myself for that. Like, when she was, she was so, so skinny. Like, I... I'm getting memories on, like, Facebook. You know how they send you memories Yeah.
When you hit a year or two years? I'm getting memories of her pictures, and she is so, so skinny. And I said, oh, okay. Well, she's getting a little taller. She's...
It's a growth spurt. This is normal. We live in Texas. It's super hot. Okay.
If it's hot, you're gonna drink water. And if you're drinking a lot of water, you're gonna go to the restroom. She was wetting the bed again, and I thought it was just her acting out because we had a new baby at the house, and she wanted to
Bed-wetting, and a new baby in the house11:16
Mhmm.
You know, just revert back to being a baby so that she could be the... Still be the baby of the house. So I made all these excuses, and it wasn't until she wet the bed again. We were using puppy pads. It was so bad, like a diaper and a puppy pad.
Oh my gosh.
And it wasn't until, like, the third time I'm changing the sheets. I'm like, Barry, that's my husband. I think she has diabetes. And he's like, oh, no. Don't put that out in the air.
Like, don't say that. And it was that week that we ended up taking her to the hospital because it got so bad.
I thought you were gonna say, Barry, we have to buy a baby pool for this kid to sleep. Puppy pads. It... Well, the puppy pads are expensive is what I wanted to say.
Yes. They... And not even the pup... Like, the pull ups are super expensive too. Like, pull ups and puppy pads, it was it was getting a lot, and I was getting so frustrated.
And I look back, and I'm like, oh my gosh. How did I... Why did I just ignore the sign? I just didn't want to accept that this could be what it is.
So you... Did you grow... You didn't grow up with your mom having type one. You were out of the house before that happened?
I was older, so I was, like, teenager, almost out of the house. So I I I remember taking, like, the the classes, like, the nutrition classes and how to count carbs and how to read nutrition labels, but I don't remember seeing her managing her diabetes every single day.
Okay. Yes. It's... It wasn't present. Now is there any autoimmune stuff on Barry's side?
No. Nothing. He does not have anything on his side.
Celiac, thyroid, people running to the bathroom after they eat, like, anything undiagnosed, stuff people don't talk about, vidolata. No.
They haven't... Not to my knowledge, they haven't said anything. It's just the type one on my
With your mom?
Of my mom. Mhmm.
Yeah. Okay. Now... Oh, I guess what do I wanna ask you right here? I I was gonna pivot to this, but I'll stay here for one more second.
Her mother has it too13:08
When she's that young and you have new knowledge coming in, but you've got your mom who now has, like, a lifetime of experience, do you go to your mom, or do you stick with what the doctor says? Do you go online? How do you kind of pull together what it is, like, your plan's going to be?
It's so funny you asked that because I... When she was first diagnosed, I did go to my mom, and I was like, what do I do? Like, how... What do you suggest? And she was just so nervous about Bella being so tiny and being so young in her diagnosis.
She didn't wanna tell me anything. She told me, like, hey. She needs to get on the Omnipod. It's going to help out a lot. The Dexcom is going to be amazing.
But as far as, like, any type of medical advice, anytime I called her, she's like, call the doctor. Call the doctor. Call the doctor. So they they pretty much... The after hours line, they they knew us by name because I was constantly calling them almost every night when I couldn't get her sugars under control.
Yeah. Do you think your mom didn't wanna offer advice because she was afraid it was wrong or that it wouldn't be applicable, or do you think she didn't know what the hell she was doing? She's like, look. I don't wanna... I don't know how to I don't know how to tell you this, but I don't know what the hell I'm doing either.
You know what? It could be a combination of both because it's so... Diabetes is just such a roller coaster, and it's so unpredictable. Like, you think that you've got it down, and then something happens, and then you have to start over from scratch. And so I think that she realized that and she said my experience is going to be completely different than what Bella is going through.
And so I'd rather her just trust the experts because it's just... It's it's literally a roller coaster. Like, that's the only way that I can describe it is because it's just so unpredictable and some days... Like, recently, we haven't had any lows. Like, the past four weeks, we haven't had any lows at night.
She's been in range most of the day at school, and then all of a sudden, I cannot get her to come down. And so I'm like, dang it. We're gonna have to change her ratios again. So once you think you have it down, then it's like you have to change it and start over from square one.
Just when you think you have it down15:11
Yeah. Something changes all the time, especially when they're growing and gaining Mhmm. Gaining weight and all that stuff when they're little like that. How does she seem to deal with it? I mean, she's got siblings, obviously.
Everyone's aware. So does she feel different? Does she talk about that ever with you?
Yeah. She does. So when she was first diagnosed is when she was really asking a lot of questions. And, especially when she started the Omnipod, and we were having to do the site changes. And now she's used to it.
She'll she'll she'll sit on the counter and let me do it. But before, it was why me? Why am I the only one that has to get shots before I eat? This isn't fair. I hate diabetes.
And she would say that quite often, and I'm like, oh my gosh. This is a two year old, almost three year old saying the word I hate, and I hate diabetes. And we went through a really rough time the first, I would say, six... Really the first year. But now she has just taken it with so much grace, and she is just positive.
And she'll tell me, hey. I made my Omnipod last three days. Can we celebrate? So we try to make it fun. Yeah.
I mean, you can't really make it fun, but we try to celebrate her even in the small moments like, hey. You kept your Dexcom on for a a extra day. Let's let's let's celebrate with something. So... But she has such a positive attitude about it, and I'm super, super proud of her.
You just made me think of something I don't think I've ever said out loud on the podcast. Like, you said, you can't really make it fun, and I thought, oh, no. You just wanna make it suck less.
And then Exactly.
And then I realized that when... Oh gosh. This will come out wrong. There's no way I'm gonna get this out correctly. But when...
Yeah. I mean, my son played baseball his whole life. And, like, I was very supportive. But, like, when I would joke with him, I'd be I'd be like, you know what you should probably do here? Suck a little less.
And... Because this isn't going well. But it was... Anyway, I'll probably get chastised for that. But I...
Suckle s is is my, like, very loving way of saying, you know, just get a little better. Like, we'll just try to get a little better. Make it a little better here.
I love
that. Yeah. So... Well, that's nice. I'm glad you do that.
I'm glad she sees it. How do the devices work for her? Are you having outcomes like you hoped for?
I am. So I've read stories of some families not leaving the hospital without a Dexcom, and that is just crazy to me. So we were fortunate enough to leave the hospital with the Dexcom on and with a prescription for the for the month. Mhmm. So I I I cannot imagine life without our Dexcom.
It's a lifesaver. And then Omnipod, she didn't start the Omnipod until maybe six months after she was diagnosed. And it was a learning curve. It took us a while to, for it to figure out her blood sugars and her algorithm, but but now it's it's amazing. I I I tell her all the time, like, Bella, I I hope you know how...
I know you're only almost five, but I hope she knows how how grateful and how fortunate she is to be able to have an Omnipod because there's so many others that get poked 10 times a day, and we don't have to do that. And I'm forever grateful for that.
Yeah. Okay. Well, me too. I'm, happy that you found something that's working. So I'm gonna pivot here because I...
Peep... There's no way for people to know this, but the only reason that my blog and this podcast aren't, you know, a nonprofit is because I looked at the paperwork to form a nonprofit, and I was like, oh, that's so much reading. And that is
You're not joking. It's... You're so right.
A long time ago... I mean, a long time ago, I had an idea about how to help people with type one, and I thought, oh, I could do it as a nonprofit. And then I quite literally, like, looked at the the paperwork, and I was like, I can't do this. I... My brain does not work this way.
“I can't do this” — the paperwork18:58
I was like I was like, I I looked... I said to my wife, I was like, can you... And she goes, do not put this on me. And I was like, okay. I like, alright.
So I said, I guess I won't do that. Or, honestly, this podcast could be a nonprofit today if I only had the ability to read and and remember things. So what made you want to do it? What gets you to actually jump through all the hoops, and is it going the way you expected?
So it's funny you say you didn't wanna read all the paperwork for a nonprofit because I'm the exact same way. I did not want to do any of that. So Brave One is fiscally sponsored by a nonprofit. So, essentially, we reap the benefits of a nonprofit, but our fiscal sponsor does all the work for us.
Oh.
So that might be an option for you.
Oh, please. It's too late now. I'm in the game now. You know what I mean? So, today's episode is sponsored by a long term CGM that's going to help you to stay on top of your glucose readings, the Eversense three sixty five.
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Visit .twist.com/juicebox. That's visit.twist.com/juicebox. Twist has two i's. Well, tell me... So tell me what your first thought was.
Like, I want to provide, do, have. What what was that
first thought? So it it really was just a combination of events. And so it it didn't come to me immediately, but I remember Bella being in the hospital. And I'm looking at her, and I'm already thinking fast forward to high school and college. I'm like, what if she wants to go to prom and she doesn't want her her devices to show?
What if she doesn't want it to show at prom?22:10
Or what if when she's getting married, she doesn't want her devices to show? Or what if she's in college and she wants to have fun? Like, everyone had fun in college. What if she wants to go out and drink and do all the crazy things college students do? Like, is this going to stop her?
And so that was always in the back of my mind. And then it was one night where we had a really tough paw change. We're, like, holding each other. We're crying. And she looks at me, and this is when she said, I hate diabetes.
And I said, oh my gosh. I wish there was someone here that could tell her it's going to be okay, and she would actually believe them because they've lived it. Mhmm. And and that's when I was like, oh my gosh. We should have a mentorship program for kids with type one so that they can see adults living and thriving with this disease, and they can see that it doesn't have to limit who they become.
Okay. Alright. That's cool. Now how do you do that? Do they, FaceTime each other?
They meet in person?
Yes. They meet in person. So, our mentors, they commit to at least six months of mentorship. And mentorship is really kind of too much of a fancy term. It's it's really casual.
It's more of a friendship. So they take their mentees out at least once a month, and they just do things that they enjoy doing together. Like, if they play soccer, they'll go play soccer. They'll... They might go out for coffee.
They'll go to the library and play games, or they can go to an arcade. There's Yeah. So many things that they can do together. It's just having that connection. Connection.
It's It's really really not not about about what they do together. It's just how they spend their time together, how they connect.
Do they have to be adults and adults, kids and kids, adults and kids? How does
that work? So all of our mentees have to be at least five years old, so Bella's gonna be old enough to be matched soon. I'm super excited. So they're between five to 17 years old, and all of our adult mentors are 18 and up.
How a match actually works23:51
That's amazing. And is this local in the Houston area?
So that was the plan originally. So when I first started grade one, I said, let's just do a pilot. Let's keep it small. We'll start here in the Houston area. And pretty immediately, we saw nationwide interest.
And so what started off in Texas, we're in 19 states now. My goodness. Grown so fast.
How many pairs of... Is pairing the way you think of it? But how many Matches. Matches? How many matches have you guys facilitated?
We have 51 matches right now.
Look at that. Oh, lovely. Mhmm. And do people re up? Do they do six months and then do it again, or do they stay friends and then go to other people?
The initial commitment's six months, but we always give our matches a chance to extend their their match. And I want to... We're we're just hitting six months for a lot of our first matches.
Mhmm.
And about 75% have said yes to extension. The others that have not extended, it's not for any reason for the program. It's because they're moving or time doesn't allow them to continue. Mhmm. But the feedback we've gotten is just phenomenal from from all sides, the mentees, the the mentors, and the families.
So is this is this a a setup where one person has more experience, knowledge, or... And is maybe more of a learned, you know, person in the pairing, or is it just for people to get together? Is it almost like a personal diabetes camp?
So it's it's funny because when I first started, it's... I thought it would be more of, like, a personal diabetes camp where they can talk to someone and ask questions about about diabetes related things that me... That we as parents can't answer. But I've learned through our matches that these... Our kids don't even want to talk about diabetes.
Like, they talk about so many other things other than diabetes because if you think about it, they live with it twenty four seven. They don't want to be reminded that they have it.
Yeah.
And this is the chance for them to connect with someone that already understands. Like, if an alarm goes off in the middle of their conversation, they don't have to stop and explain. They can just keep on with their conversation. And so a lot of our matches don't even talk about diabetes. It's just being in presence with someone who truly understands what they're going through that makes all the difference.
It's a pen pal in real life.
Yes. Exactly.
Yeah. Well, that's awesome. And have you... But you don't have diabetes, but I was wondering, have you thought of doing it for parents or caregivers too?
You know, I've had a couple of parents ask me this if they could... If we could have, like, some... Like, a community for the parents and the families. And I thought about it. I just did not realize, and I'm sure you can relate with the juice box.
I did not realize how much work this would be. This... I'm like, you can definitely relate. I... This has become...
And I'm not complaining because I love it, and I did this myself. It's become another full time job. Mhmm. And I did not realize that it was going to be so much work. It's...
I I love what I do, but I was like, I cannot add anymore.
Last night at 03:30, I'm under a blanket hiding from my wife's fan because I'll... It's gonna kill me. And and and a a hand comes through the blanket and, like, shakes my arm and goes, are you awake? And I said, yeah. And she goes, why?
A hand through the blanket27:25
And I was like, I mean, there's stuff to do. Mhmm. Mhmm. So...
Yes. Yes.
I I I hear what you're saying, and I'm also not complaining. But, I mean, when my alarm went off at eight, I was like, oh, what was I thinking? Yep. I'm a little too old for all this. So so what is your...
I mean, obviously, you're you're probably a one woman show. Right? You're doing it on your own.
I actually have a... An amazing team of six volunteers that I tell them every day. I said, I could not continue to build this out without you. So I have an amazing team that's helping me keep this going every single day.
Who's facilitate... You said there's, like, a, like, a benefactor. Who is the benefactor?
Well, what do you mean?
Like, there's a person fund... Foot... Like, you said there was, like, an organization above you helping you with paperwork
and stuff. Who's that? They... There is Players Philanthropy Fund. They're here...
They're... I believe they're based in Texas, but they pretty much handle all of the things that nonprofits have to do as far as, like, filing paperwork and they handle, like, all of our donations so that our donations can be tax deductible. So we reap the benefits of a nonprofit, but we don't have to do all of the admin and and the dirty work. They do that for us.
Are they a nonprofit, or are they
They are a nonprofit. Yes.
I... You gotta love business people. Like, somebody was like, you know, there's nonprofits. We could probably start a nonprofit to help the nonprofits.
Exact... Yes. Yes. And they they have so many projects that they sponsor, and they are essentially a bank. So they have to handle all of these donations, all of these money.
So, yeah, they're they're making a profit.
How are you... Yeah. I was gonna say they're like, you know what? What if we just took a couple of pennies off the top here? Exactly.
What, how do you get... Like, when you when you say you're gonna do this out loud, how do you get, like, that initial support, and how do you find the process of having to chase more money?
Yeah. That's the tough part is is the is the fundraising and the raising money because we have families that relate to our mission and they agree that this is much needed, but, hey. We're all hurting for money right now. Like, it's it's hard to to ask for money when... I mean, just to be honest, a lot of people don't have it.
And this... And honestly, like, for just the funding landscape right now for most nonprofits, I've I've been applying for grants too. It's just really, really competitive out there.
Mhmm.
But what I've been focusing on is just really spending time with families that truly resonate with our mission. And we've gotten a few personal donations, and luckily Brave One can run without a lot of funding. A lot of our funding goes towards insurance, background checks for our mentors, and we send warrior boxes to our mentees to welcome them to the family. So those are our really big three expenses. And so we'll have families, and we're starting to look at corporate sponsors that can help us fund those.
Where the money goes30:21
But it's it's it's hard.
My god. Hold on. I'm gonna die. I'm not sure what just happened. I apologize.
I'm sorry for everybody else. I'm probably not editing that out. My question was gonna be, though, when when people are look... When you're looking for sponsorship, I mean, there must be that fear side of it of, like, well, we're gonna put two people in a room together. No one's there to watch them.
And what if one of them, you know, loses their mind and strangles the other one? Like, did we
You're so you're so right. And that's what's so hard about having a youth mentorship program. And so this is my background. So for my full time work, I help build and scale youth programs. And so I'm very familiar with the operations and the systems that go behind it, and safety is going to be our number one priority.
And so what's great about Brave One is our families are responsible for bringing their child to and from these outings. We call them outings, so it's pretty much an activity. Mhmm. And so because parents are responsible for transportation, they're gonna be in the area. So they always meet in family friendly public locations.
They will never be alone with the child. We talk about boundaries and, safety very extensively in our mentor trainings. They complete the training. There's an onboarding process and then background checks. But what what keeps us safe is we really...
The family stay for for the outing. So the child is is really never alone with their mentee, their go... Or their mentor. They're they're going to be in a a public setting, but they still get that one on one time.
It's like a playdate with a background check.
Exactly.
Probably the safest place in the world is at this thing. But I take your point. Like, you have to have you have to have insurance because you're introducing the people to each other. Right? Yeah.
And there's... So there's liability insurance. There's probably Yes. Other stuff in case somebody decides they they wanna come after you for some reason or... Oh my god.
Exactly. Yeah. We have to have all those in in place.
How far into... Like, once you have the excited idea and you're like, this is great. I'm gonna do this thing. Like, how... What's...
How many road bumps until you go, what was I thinking?
Oh my gosh. That is such a good question. And I honestly... We're we're a year and a half in, maybe, not even two years in. I have not
Have that feeling?
Hit that yet.
Good for you.
But I can tell you it's it's coming. Because right now, I was just talking to my team yesterday, and they're like, Brandy, you need to slow down and calm down and focus on one thing because I have... Like you, I'm up at... Up in the middle of the night. Like, oh my gosh.
I should be asleep right now, but I have such a good idea. And I'm I'm just throwing ideas at the team, and I'm so sorry guys if y'all are listening. But we... It's it's so hard to focus on one area when you're so passionate about it. So I have not hit that moment yet, but I'm telling you it's close.
Well, you're probably... I'll... I don't wanna speak for you. I'm asking you through the statement, but you're probably getting feedback back from people who really makes you feel like, oh my gosh. This works.
It really valuable.
Yes. I get text messages from parents telling me... Or I'll get emails late at night like, this has been such a blessing to my family, and they'll share stories. And they're sending me pictures of their child and their mentor drinking coffee or playing soccer or Yeah. At a arcade, and it's just so rewarding.
And that just... That's honestly the fuel that keeps me going is just hearing, the stories from our families.
It's pretty great. Well, I I... Listen. Don't let me, like, you know, tell you what to do, but I hope you keep going because I think that's really fantastic. I...
You will get frustrated along the way and, you know, have to reset here and there. But, where's the where's the bulk of your effort from? Is it trying to do the business stuff? Is it trying to reach the people? Is it trying to get donations?
Like, when you say, like, you know, it's a second full time job, like, there's gotta be... Bulk of it's gotta sit in some... One of those buckets. Right?
It's really a mix of everything. So, I would say a lot of our time is admin. So we don't just match and say, okay. Good. You're good to go.
You can do whatever you want. We are constantly following up with our matches. So we send out surveys. We ask for their feedback. We we have communication tools like group meetings, and we have virtual meetings just to keep the community going and so that we stay connected.
We have events that we're hosting that our families wanna host for us. And like you said, trying to find funding so that we can continue to keep this free for families. And we get applications from mentees and mentors, pretty much every day. And I tell my team all the time, like, we're gonna cap it at 50. We're gonna stop.
Like, yeah. Yeah, Brandy. Yeah. Whatever. So they don't even believe me when I say that because we get applications on a daily basis.
And if I find a mentee, mentor match, and I'm like, oh my gosh. This is a match made in heaven. I'm just gonna go for it. And so whenever we do find a match, it's setting them up with training, getting their background check set up, sending them all their documents for onboarding. So it's just...
It's a it's a mix of operations and funding and organizing events. It's a little bit of everything.
My gosh. Husband involved in this, or is it a thing you're doing by yourself?
It is a thing. He'll... He has a brave one dad shirt if that counts, but it's pretty much...
I mean, when you're doing the the paperwork, I don't I don't think that counts, though.
Yeah. He'll he'll wear his brave one dad shirts if we have a spirit night and we're we're... We have an event. He'll he'll happily show up. But other than, like, the admin pieces, he's like, oh, Brady, that's all you.
How how about Bella? Does she getting any value from it, do you think? Even though she's
it She is. So she's not matched yet, but I'll show her pictures, of the matches and them having fun. And it's so cute because they'll all send me some pictures and and they're posing in their Dexcom or their Omnipods. And I'll just be like, Bella, look. They have an Omnipod like you or they they have type one diabetes like you, and she just completely lights up.
She completely lights up36:37
So, she'll point at them like, oh, look. They're brave one. And it's just it's just so cute. I can't wait for her to be matched.
Do you... Are you finding it to be mostly newer diagnosed people, or is there a mix?
It's a mix, but it's mostly going to be newer diagnosed. I will say most of our mentees have been diagnosed for less than two years.
Did they tell you what what their motivation is to be a mentee?
Yes. So we're very, very intentional when it comes to matching. And so on the application, we always ask, like, hey. What do you look for in a mentor? We'll ask the mentor, like, what type of child would you match well with?
Because we want them to be able to bond on other things besides type one. And so we ask for their hobbies and their interests and even down to, like, hey. Would you like a older mentor or a younger mentor? Like, what are your preferences? So Mhmm.
We ask all of that in the applications, the interest forms that we have, so that we can be very intentional when we match them with the mentor.
Do they... Do the mentors indicate why they want to give their time?
Yes. And it's... Reading those responses is just, like, so heartwarming, and it's crazy because they all essentially say the same thing. I'll say... Like, we have four...
Over 400 mentor applications. And I would say probably 90% of those, maybe even more than that, they all say the same thing that they want to be who they needed when they were growing up. And they said, I wish this type of program was allowed when I was a child. Like, this could have meant all the difference. Like, I'm...
I probably wouldn't have gone through my burnout phase. Like, I would have had somebody I could talk to. Like, they all say that this program is allowing them to be who they needed, and it's so special for them.
Have you had to say no to anybody?
You know what? So I have, but I haven't had to tell them in their face. They're just on the waiting list still. So if I... So all of my mentors that are out there and listening to this, if you are in the program, you have been selected from a highly competitive pool of mentors.
And so, me and the team, we go through applications pretty... Almost every day. And so we're looking at their, their answers, and we're seeing how how their thoughts come together. Like, hey. Are they are they doing this because they're genuine about it?
Or or, like, are are they just doing this just to do it, just to check the box? And so we're very, very selective when it comes to choosing who's going to be a part of the program as a mentor.
Sounds like this hasn't happened, but I'm gonna put you in a hypothetical. You're going through one of the applications, and it's clear this person is cuckoo for Coco Puffs. Okay? They're just... They're really out of their mind.
And do you just sit... Like, how do you... I don't... Like, but they still are like, I really wanna help. But there's something that comes off as unstable about them.
It doesn't matter what it is, really. I mean, how do you how do you imagine handling that? Or... Mean...
That's actually happened before. And luckily, like, when we... On our application, we let them know, like, hey. We are a very, very small organization. We're still very new.
When you fill out this application, this does not mean that you're going to be matched in the... Like, not even in the near future. Like, there's no timeline. There's no deadline. We will reach out to you if somebody is
A good one.
Identified near you.
Okay. Well, that's very, adult. I got it. I... Listen.
As a person who receives a lot of correspondence, I can just tell you once you get into the third paragraph, I start going, uh-oh.
The... Oh, yeah. I've I've seen those applications, and I'm just like, delete. Like, let's just put a red line across that one because I don't think this is gonna work.
I like that writing this has made you feel better, but, I mean, is there a question
in here?
You know? Like... Meanwhile, I really do like the correspondence. I shouldn't say otherwise. I've actually...
I think I've I think I've trained people not to correspond with me by... Because it it... As the listenership goes up, the correspondence doesn't go with it. And and I think it's because I spent so much time on the podcast going, I get a lot of email. I hate answering my email.
Please don't send me email. I think people started listening. So I feel bad about that. You guys can send email. It's cool.
And if you're crazy, whatever. I mean, it's... I'm crazy.
Let it out. Yeah. Vince.
I... Listen. I went to... She'll never hear this. Right?
There's no way she'll ever... So I had to, I... If you're not thinking, oh, they'll never hear this at least 20 times, you're not making a good podcast. And so, I'm... I had to go to the the pet store last night.
Right? I had to pick up some crickets to feed one of my lizards. That's what I had to do. I'm just gonna be clear about that. I get into the pet store, and this woman is helping me.
She's older, but she's got, like, a old hippie vibe. Like, you know what I mean? Like... Right? And she's real cool and everything.
And she goes, she's... What are you feeding with this? And I said, oh, I'm gonna give these to, emerald tree skinks. And she lit up and started telling stories and everything. And she's like, are these the ones like that?
I said, I... You know what? I have a picture. Hold on. I'll open up.
I'll get the picture for you. Now I'm showing a lady, I don't know, a picture of my tree skink in a in a pet store. And she's like, oh, let me show you something I've been keeping. I was like, okay. Right on.
So then she opens up her phone and shows me that she has a pet cockroach.
Oh my gosh.
A a Madagascar hissing cockroach. And I have to tell you that I judged that. So I was like, oh
my god.
But I didn't out loud. I was like, oh my god. That's amazing. What made you keep that? What I thought was, that's a bug in a box.
I'm not sure what we're doing right now. But...
It's disgusting. And it's always it's always the pet stores. It is always the
pet stores. Like, I have Look how pretty it is. Isn't it gorgeous? And I was like, yeah. Like, I...
Listen. I talked to her the same way I would talk to you if you were showing me pictures of your kid in the mall. You know what I mean? I was like, oh my god. It's beautiful.
Oh my.
And and she... But but here's my point about her. She was awesome. She she really was lovely, and I had a very nice conversation with her. It's...
Is she a little left to center? She is. But you can make the argument that I was there buying crickets to give to a skink that's from, like, some island off of, like, Mazul.
So, like, yeah. Whatever. True.
Yeah. Yeah. So, any... Anyway, I just don't know. I...
It... That's how it occurs to me when I'm thinking about your job. Like, oh, one day, she's gonna have to say to somebody, yo. This ain't for you.
Oh, yeah. And it's it's it's gonna be someone that's like, hey. I've been waiting. I've been waiting. Any update?
And I'm just not gonna be able to sugarcoat it any longer. And just
be Because I deal with people online in mass, and I want... I I wanna say overwhelmingly, everyone is fantastic, and I genuinely mean that. But every once in a while, you're like, oh, I am being, like like, accosted through typing by a person who's going through something. Yeah. You know?
And you're like, well, the first thing you try try to do, like, the, oh, your cockroach is beautiful. Like, that works in that setting where I can walk out of the pet store. Right? And then... But when you when you do that online, it doesn't work the same way.
When you do it in writing, like, they'll they'll persist. And then eventually, you have to you have to be honest, and then that honesty is not very frequently met with understanding. Exactly. No matter how kind
you are.
So it's it's an interesting pro... Like, I'm just saying you've given yourself a lot of problems by starting this nonprofit up.
You are not wrong about that.
Are you drawing a salary from it?
No. I am not.
Oh my god. You just have a hobby?
Literally. I have never referred to it as a hobby, but you know what? That's exactly what it is.
But but but I I don't mean that in a bad way. Like, I mean, like, listen. If you do something for whatever reason and somebody's not paying you, it's the thing you're doing because you enjoy it. Mhmm.
Yeah. So Exactly.
Well, that's... And so what are you getting from doing it?
As cheesy as it sounds, just the impact that it's made on on families across the country. So we're in 19 states, and I will go... I'll stay up late at night. And if I just need to pick me up on why did I decide to do this, I'll I'll look at the survey responses, and I see the impact that the families are saying that it's that it's done for them, not even just the families, but the mentors. And they'll tell me all the time, like, Brandy, this has just been so amazing, and they'll send...
Our mentors even get together on their own, and they have their own little community nights, and they set up their own things. So we pretty much have just, this brave one community, and they'll they'll send me pictures, and they'll send me texts just thanking me for starting this. And that's honestly what makes it what makes it worth it.
Lovely. I actually think the reason I was up late working last night is when I was going to bed, I was just going through all my messages at the end of the day and and trying to answer people. It's just somebody just said the loveliest thing to me, like, in a YouTube comment. Aw. And and I think it really, like, must have it must have reenergized me because I I Yeah.
I had a thought about something that I wanted to do. And then I was like, I'm tired. I'm just gonna go through and do all my messages and everything. And I did messages and everything, and then I got this one thing. And I think it just lit me back up again.
I was like, oh, this really meant something to this person today. You you know?
Yeah. It's those moments. Yeah. They... And they definitely come at the right time when you feel like, oh gosh.
I can't do this anymore. And then you get a little pick me up like that. It's it's exactly what you need.
Yeah. Oh, if you're listening, if I ever respond to you online that you made my day, what I really meant was you saved me today. So thank you because I I found the end of my rope today. And and this was this was really helpful. And it...
You're right. They do always come... Kinda come at the right time, which is which is nice. Mhmm. Do you think this is a long term thing?
Do you think it's a thing you build up to hand off to somebody else? How long
I hope it's a long term thing. I have... Like, we have so many plans for brave one. We're actually piloting chapters now. So my my dream is for brave one to have a chapter in every state so that if a family wants to sign up their kid, they can wait thirty days versus waiting for...
A chapter in every state46:46
I don't know how long some of our children have been waiting. But they have a chapter that they can go to for direct support. Yeah. And so I... We have we have so many plans for brave one.
So this is definitely going to be, we're in it forever.
How, that's awesome. How do you see it working when it gets big enough that you're not enough and your six, you know, people who are volunteering aren't enough. So I I mean, it's coming through. I I have a real place of interest on this because there are probably... I think I've lost count at this point, but 13 or 14 people that helped me just to manage the Facebook group.
Oh my gosh. Yeah. Yeah. I think about that question every day, and I have... I don't I don't have an answer for it.
And I definitely need to start thinking about it because I've already told, our team, we have monthly meetings, and we've already talked about, okay. So what comes after this? So we've already proven the demand. Like, what... We're pretty much at capacity now.
Like, what's next?
Yeah.
And so that's that's definitely something that that we need to talk through more. It's just I'd never imagined that it would grow this big. So we were... We only had four matches in February, and I kinda thought it would stay around no more than 10.
Mhmm.
And then we hit 50 pretty fast, like, in less than six months. And I was just, oh, wow. This this is growing a lot faster than I than I thought it would. So we're... I told, I told one of my volunteers yesterday, we are building the plane as we're flying it.
Building the plane while flying it48:15
That's just
Oh, no kidding.
What we're doing.
And I assume too as you have more capacity, you'll be able to match more people. And
Exactly.
Then the... If you're if you're lucky and successful, then that means there's no end to it. So there's no end to the need for more resources to make it happen. And it's interesting. A lot of your cost is back end stuff.
Mhmm. Yeah. It's not... Like, the actual fit... Because I bet you on the day one when you thought about this, you're like, great.
I'll just match people up together. That'll be awesome for them.
They're like, oh, it's not easy. And you know what? A lot of our... A lot of people that aren't, like, familiar with the brave one, like, oh, okay. You match you match family.
You match kids and adults, and that's it. And there's there's so much behind the scenes that people don't see that we're doing on a daily basis. I don't think they realize not just the time that we invest, but also the money that we're personally investing in this. It's it's definitely... I tell people all the time, it's it's free to families, but it's definitely not free to operate.
Yeah. I know. I I was... I I feel that way sometimes with... I'm like, I tried to...
It's a weird balance to say to somebody Yeah. Hey. Look. I am not asking you for anything here. Like...
Because I... In my position, like, I don't want anything from you guys. Like, I I don't want your money. I don't want you to... Like, I I...
But if you don't subscribe, if you don't listen, the whole thing will literally fall apart. And and it's weird to live in an ecosystem that dictates how you do things that isn't money based. Like Yeah. Because if it was simpler for you... If you could...
Transactional, I should say. Like, so if if it was easy enough to you to go to those people and go, look. If you wanna be matched with somebody, it costs $50. Like, you know what mean? And then that covers the the, you know, the back end stuff that happens, but that's not what you're trying to do.
And Yep. And then, yeah, and then if you can't get somebody to help, it's... It really is a... It's a hell of a catch 22, actually.
It is. It's it's so... It's such a tricky situation because I never wanna be in that situation where I'm telling families like, hey. Like, I mean, can you at least put a little bit of something towards your match to alleviate some of the burden that we're that we're personally investing? But I I tell myself, they say never say never, but I will say, like, I never want to charge families that are looking for support.
Like, I just Yeah. I I just can't.
I'm so adamantly against the idea. Like, if you ever hear me say to you, the podcast costs money or I'm coaching, you know, would you like to have the proper... Like, just know that something really terrible happened to me because I I I... I'm not mad at people who do it. Yeah.
I certainly don't wanna tell people how to live their lives, but I am... I... I'm very uncomfortable with the idea of health coaching in general. I'm very I'm very uncomfortable with the idea of, like, taking money from somebody to tell them something that is, like, pretty simple and reasonably available, like, that kind of thing. Like, I don't wanna be a part of it.
I don't know that if I met you and you were doing it, I'd be like, oh, that's bad. I don't think that at all.
It's just not my cup of tea. Just not for me. I get
it. Yeah. I would prefer to do it this way. And Yeah. And then the other side of this thing too is, like, getting to people and making them aware of what you have to offer.
That becomes... I really know that I'm talking about this too much, but I I hope that people listening realize it's because it's becoming more and more of a factor every day. Yeah. Social media has stopped being a tool for the users. And so you can't really reach people through social media anymore unless you unless you pay for it.
On reach, influence, and paying to be heard51:44
And then I don't
Exactly. That... It's so so so... Yeah. It's wild.
It's upsetting.
I'm getting messages, oh, you should pay for the little verified check mark. I'm like, no. I'm not paying $15 a month. You get a little blue check mark by my name. Like...
No. Or or or to... Like, you know, everything you post at this point, people who have personal accounts don't know. But, like, you post on Facebook, you post on Instagram, TikTok, the next sheet that comes in front of you is telling you, if you just pay us money, we'll
make Exactly.
We'll make sure somebody see... Yeah. We'll
boost it.
We'll we'll let somebody say it. Yeah. Yeah. If you'd... If you put...
If you give us money, which means that it's not... It's it's just no longer what it used to be. And that was... You know, like, I don't wanna sound old, but, you know, there was a time where if you started a business or an organization like yours, you would have bought an ad at the back of a penny saver or put yourself in the yellow pages so that somebody who was like, oh, I wonder if I can find a diabetes mentor. Now that...
And then it was, well, I'll get a website. But now that now Google... Like, you can't just Google something anymore. Like, people's Google reserve... Results are paid.
You can pay. You can pay to be the first Google search.
Yep. Right. Google results are paid for. And then you think
You can't even you can't even trust the reviews now either.
No. Of course not. Oh, please. There's I... There's some...
I will not... I would definitely not say who, but I am... And I could be wrong. I wanna say that, but I'm a connoisseur of the space. There is someone paying for downloads on a diabetes podcast right now.
Oh. I I'm sure.
I can just... I smell it. I can see it happening. And, like... And so I've never done anything like that.
I never I never would. I wouldn't pay for a follower, but you can. Like, you could send money somewhere and some will come and pretend to follow you, and you'll look like you have more people following you or it'll download your podcast or your YouTube video or whatever. And it is an incredibly common practice to bolster those numbers and then go out in the world and try to sell ads based on those numbers. If you don't if you don't know that, you...
You're not in this space. That is an incredibly common thing to do. So if you're following somebody who seems to have a ton of likes and hearts but not a lot of comments
Exact... That not... No engagement? Yep. That's a red flag.
Yeah. Wonder what's going on there a little bit. And, and, nevertheless, like, I even under... Look. I I genuinely wouldn't do it.
I guess this is a thing I'm judging. But, like, but I also understand if somebody's stuck and they really need... They need a life or money or something, like, I understand the idea of feeling like, oh gosh. Maybe I could just, you know, buy buy a couple 10,000 of these downloads and then tell somebody somebody's listening. You know?
Anyway, like, it's... Anyway, the whole ecosystem is like that now. And when you're trying to do what you're trying to do, you know, like, how do you even... Because even if you come into my group and try to tell people, I'm gonna stop you. Yeah.
Right? Like, so there... Because if not because I don't like what you're... Obviously, I'm having you on the podcast. Right?
But if I let you come in and make a big post about it, everyone else in the world is
gonna be like, oh, what about mine? What about... Why why did you delete mine?
And it's gutter thing. I'm trying to help kids get teddy bears in Okinawa. Oh, I I I didn't know that was a problem for the Japanese kids.
Like children's I have a children's book that
I used to use. Children's book. I had a lady on that wrote a children's book recently. That was my good deed children's book for five years. I don't wanna hear from anybody else.
Okay? Also, with this org thing, don't reach out to me and tell me you had Brandy on. Brandy was the one. She's Jose Altuve. She's the four foot tall second baseman that gets to play professional baseball.
The rest of you are not playing. Okay?
I can't I cannot imagine that, yeah, the the comments that you get.
It won't... Or just... It's the asks. And then, like... And nobody understands that the podcast does what it does because of the balance it has.
If I have every one of you on that wants to do this, then nobody will listen to the podcast. If I if I if I, let every post in the Facebook group be about a thing you need or a walk you're going on or a thing you're trying to raise money, then
Oh, yeah.
It it just falls That
would be the whole podcast if you allowed everyone to do it.
If the if the group started that, nobody would go to the group anymore. And the podcast, would... It would... Would wanna listen to that. Yeah.
I just learned about a thing a couple of weeks ago. Blew my mind. I post... I know I shouldn't be... There's I'm smart enough and savvy enough that this shouldn't blow my mind.
But I got it into my... I I I never go on other people's podcasts. Right? It's just not a thing I do. And I thought the other day, was like, well, maybe I could go on somebody's parenting podcast or talk about, like, something like...
Like, maybe that would be interesting. So I looked around at a few of them. I found one that looked like, yeah, people seem to listen to it. I I liked what I was hearing when I was listening a little bit. I went to their website.
They were like, we are accepting applications for... And I said, oh, it's a slam dunk. I have an incredibly popular podcast. I'll reach out to them. They'll wanna have me on.
I go on. There's a little form on the website. I'm filling out the form. At the bottle of form, it didn't... It...
The form informs me that if I should be chosen... Do you know what's gonna happen, Brandy?
No. I'm gonna Don't tell me what I think.
Oh, I'm gonna pay them to be on their podcast.
Oh, wow.
And I was like, what now? So in that That
is insane.
So then, anyway, so in that box, I wrote, well, I wouldn't be doing that, but if you still wanna have me on, you can let me know.
Don't So do they have people on their their podcast? Like, I can't imagine someone
would pay. Yeah. Brandy Brandy, see this... You seem like a decent person like maybe I am. So I went online to say how...
Like, I was in the group, and I was like, you know what I just learned? And the feedback I got back is this is an incredibly common practice.
Oh my gosh.
So there are people who start podcasts just to charge you to be on the podcast so that you have content that looks like you were on a podcast. Wow. And I was like, snap. This world is out of control. So so for clarity, you have a thing that isn't reaching anybody, and you needed to reach people.
So you go to another person who has a thing that doesn't reach anybody, but it looks good. And so you get to go on and get the video or the audio and then share it back on your channels, which, by the way, is not a way to reach people because if it was, you wouldn't have needed to do this thing. And now you have this really well produced audio or video
of you being nobody's gonna see.
No one's gonna see, that nobody has seen that you paid for. And so, like Oh my gosh. So I had a person who was lovely online who was like, listen. Gotta tell you, this is a really common business thing that gets done too. Like, CEOs go on shows that they know no one's listening to.
So the
thing my gosh. So it looks like they're, like, on a TED Talk or
something. Yeah. And I was like... So the whole thing just blew me up inside. I was like, that can't be real.
And then I paused for a second. I was like, oh my god. I could I could be rich if
I did that. Wow.
Was like, yeah. I'll just sell... But I wouldn't do that. And and when I do... Listen.
I I have advertisers. And if you hear somebody from the company that is an advertiser on the show, you should know that in every one of their contracts every year, they have the the opportunity to send somebody on once a year. And... But when I do that, I put their ad on it so you know Yeah. You you...
Like, it's an ad. Like, you know what I mean? Like Yeah. Even if somebody from... I mean, I think I have, I have an episode coming up in a week or two, like, with somebody from Twist.
Now I would have had this person on whether Twist was an advertiser or not because I was interested in the content. But because they're an advertiser, then the episode goes up with their ads on it. It's clear that they work at Twist. You can listen to it if you want to. Like...
Right?
Yeah. But,
anyway, I was, like, I was flabbergasted. Like, I really... My... I don't know how to say this exactly, Brandy, but, like, I... Because I don't wanna sound like I'm telling you to get off my lawn.
You know what I mean? But I have less faith in people every day. Like...
Oh my gosh.
That was one of the things that got me.
That thought would have never crossed my mind for a way for people to to make money. Like, I just... I did not know that was a thing.
So when you are, I don't know, buying something or paying a business or something like that, because you're like, oh, I saw them on this show in this show. It is completely possible that they paid for that just so they could use the content as marketing that is subterfuge, like... Because it it makes you feel like somebody was like, oh, that's very interesting. You should come to my podcast and talk about it. I...
It would be it would be like if when you reached out to me, if I said, yeah. It's no problem, but you're gonna have to pay me.
Oh my gosh. Yeah. So I don't even know what's real anymore.
Exactly. Thank you. I'm glad to have ruined your feelings about the world. Because now you can live in the same hell I live in now that I
live my gosh.
That's very upsetting, isn't
That is so crazy.
Mhmm. Yeah. I... And by the way, I don't imagine it's... I mean, I don't imagine it's everybody.
I've never, like... I've I've never, like, taken money from somebody for them to be on the podcast. And, again, if somebody's been on the podcast, and it's been like that. It's like this episode is sponsored by the person you're listening to.
Exactly. I actually had someone reach out to me, and they were just like, hey. Are you trying to get more exposure for your organization? Like, we write these articles, and it reaches these people. And after the end of, like, a ten minute conversation, she's like, yeah.
Our our lowest package is gonna be $1,500. And I was like, oh, goodbye. Like, there's absolutely no way I'm paying for that. That's crazy.
I am featured in a New York Times article. I definitely think if I say this out loud, I will never get this opportunity again. Whatever. Okay, Brandy. Right?
I'm... A company I was doing business with a few years ago who... Okay. I won't say that part. They they asked me if I would, allow myself to be interviewed in, like, a fairly prestigious newspaper.
And I was just like, yeah. Sure. Like, you know, they're like, we'd love it if you would tell your story and everything. And I was like, okay. No problem.
So now I'm on the phone doing, like, a fairly comprehensive interview with a person. And I was like, oh my gosh. This is crazy. And it gets all done. And I just say, like, I don't ask for money to do the interview.
Like, by the way, you should know anyone else who's an influencer is asking to get paid every every time they stand up. I'm on my way to Touched one in a couple weeks. Like, I'm gonna spend my weekend flying to Florida, speaking all day at touch by by type one and coming back. I'm not asking them to pay me to do that. Exactly.
Like... And and if you did ask them to pay you, that's fine. I don't. Like, that's Yeah. Touched by Type one buys ads on this podcast.
I've had an agreement. I've... A a a business agreement with them for ten years, and I've been helping them since before that. Okay? And I...
It's a thing I like to do, and I like to do it. I go to talk at other stuff. I don't ask people for money. Even there's times when I could ask for money. I'm just like, no.
It's fine. Like
Yeah. It just feels wrong.
You're covering me to fly in and out, and you're putting me up in a hotel. Like, that's good.
Like, you know what mean?
Like, I'm fine. I don't want it to cost me anything. Like, pay for my, you know, pay for my bagel, but, like, you know, that's pretty much the end of it. Right? And having said that, I just I just threw a bunch of receipts away from something where I was like, I'm not...
This is stupid. I'm not asking them to pay for my bagel. Nevertheless, like, it is... Like, I do the interview. Right?
And I think it goes really well, and I'm proud of it. And one day, somebody sends me a link to it. I think, oh, I'll go look at it and see how it worked out. And there it is. You're in a fairly prestigious newspaper.
You're being talked to by the thing. And then I look harder and I realize, oh my god. The company paid for this. This is not a... This isn't an interview.
This is an ad that looks like an interview.
Oh, wow.
And I was like, oh my god. I was like, I didn't... Like, and I guess that's a thing I should have known, but I promise you, I did not know that was what was happening when I did it. So they paid the newspaper to write the article.
Oh, wow.
Yeah. And they told them what they wanted the article to be about, and then they used my part of it for, like, the human interest side of it to make it look like an article. And I'm gonna tell you right now, I don't know this for sure, but when a famous person's kid is diagnosed and the next thing you know, you're reading a full spread about them in People Magazine, I guarantee you somebody paid People Magazine to write that story.
Oh my gosh. You were just, like, exposing all of these things that I'd never even thought
happened. I just need you all to just subscribe and follow. I'm not I'm not asking you to do anything else, really. Just... You just listen to the podcast once in while.
That'd be awesome. No. It's it's... So, anyway, this all this, like... Because we kinda talked earlier about, like, how the, you know, how the the...
Everybody wants you to pay to be in some... Everything is like that at this point. Yeah. So I'm just here to let you know that when I have people come on the podcast, I don't ask them to pay me. I...
Do I have to put that in the thing and tell people? Because when people said that, one person responded back to me and said, Scott, you don't charge those people to be on your podcast. I was like, no. Then somebody said, well, you could. And I was like Oh my gosh.
Like, I'm not
going to. You're the minority here by not charging.
Maybe. Maybe I'm leaving money on the table. I don't know. Oh my gosh. I...
The whole thing's... I'm not gonna... I would never, I wanna say. And... But at this...
Anyway, this is the world. So good luck.
Yeah. Yeah. Yeah. You're right. Good luck.
Because the world is crazy.
I am gonna retire and sit somewhere warm and make sure this lizard's okay and talk to my wife only when she wants to talk to me. So I'm thinking Tuesdays and Saturdays maybe. And then I just wait for the Lord to come and get me. You you know what I mean, Brady? Hey.
That sounds like the life. That sounds like the life.
I'm almost done. I... This this is really flipping me out, like, now. I I think it's just because I'm old. Like, I don't...
I didn't grow... Like, I'm in a really awkward position where, like, I I I was talking to a young person the other day, like, 23, 24 years old. And I... They... We were talking, and and I said, it must be strange for you, like, that this is, like, how I make a living.
And she said, you're, like, my freaking hero. Are you kidding me? And I'm like, I am? And she goes she goes, I can't believe you have a podcast. Like, that's a...
Like, that's like a functional business. Like, the help... Like, she's like, you help people and you pay your bills. And I was
like Yeah.
I was like, great. She goes, yeah. Everyone I know is trying to do that.
Oh, yeah. And I was
like, oh, I wasn't trying to do it at all. I just... I don't... I can't believe it happened, actually.
Yeah. She's so right. If you ask any kid right now what they want to be when they grow up, they're probably going to say, like, an influencer. Like, that's what all these kids wanna be.
I said to her, just get a job. I mean, seriously. I also said, like, the same thing is, like, I'm like, I already got this job. Like... And she's, by the way, not involved in diabetes at all.
Like, I was like, there are very few people who do this successfully enough Oh, yeah. Such that it, like, warrants somebody saying, hey. Here's some money. Read my ad for me. And so, I was like, it's not gonna work.
It's just... It's... It just isn't. And then I and then I thought, maybe I'm wrong. Like, maybe the whole world has become so transactional that it is possible to start up an Instagram and make $20,000 a year off of it or something like that.
Like, maybe I'm maybe I'm naive. Like, I
Well, the only way for you to find out is if you find yourself a coach and pay 15... What... How much are their their subscriptions? And they can coach
you on how to do it. Oh, you... Oh, sure. Yeah. Well, I I know I say this too much on here.
By the way, Brandy, I'm sorry. But anyway, what... Guys, go help Brandy with her with her org. But I I know I said this on here too much, but my son and I were just talking about it again the other day because I think I've talked about it on the podcast. I've never talked about it in my real life.
I said one of the most despicable things that I see now is that everybody wants to be an influencer. Oh, yeah. But what is it you're going to influence? Exactly. And and so there's...
What's the biggest group of people who need influencing are people who want to be influencers. So someone just gets popular telling other people that they can be successful too. Yep. And then it's it's it's a pyramid scheme. I don't know that I know the exact...
It is a pyramid scheme. You are so right.
Of course it is. Like... So I have a YouTube video where I tell you, oh my god. Like, I'm such a... I'm so successful.
I'm very, very successful, and you can be successful. Here are all the things I've done to be successful. But my success is in getting you to listen to me tell you that you could be successful too. That's not an actual thing. Yeah.
Because then that means you have to go sell the toilet brushes to somebody else.
Exactly. And and
I don't know if that's a reference. Younger people understand, but I harnessed hope in this scenario, sold the hope to you, and all you can do is go sell the hope to someone else.
Yeah. You're
just stealing money from desperate people.
Yep.
Yeah.
That is exactly it, and it's... You really can't escape it anymore. Like, that's that's really why I'm not on social media. I'll post for our organization, and then I get off because, like, scrolling and seeing all of the, like, hey. You can you can be a stay at home mom and make money like me too.
And I'm like, oh my gosh. I just can... I cannot. And it's every... Literally everywhere you go
Yeah.
Because post like that.
Because that scenario... That post, right, is you can do it too either buy my PDF for $30. Yeah. By the way, I just... Last night, I was talking about a rabbit hole last night.
I... I've never clicked... I'm just gonna come right out and tell you. If you're in a diabetes influencer, you have, like, I've never I don't know who you are. I don't care.
I don't I don't look. I don't know. I mean, it's lovely. I... Sometimes I see your face go by me.
You seem pleasant. You know, whatever. I... Last night, started clicking on people's profiles because everybody's got, like, a little link in their profile. Inside of my link takes you to, like, the free pro tip series, the free bowl beginning series.
This this thing that does this for you for nothing and that, you know... Or, you know, you can support the sponsors if you want, but everything I'm giving you content wise is free. Yeah. I look in the thing. Everyone has their half assed thoughts written down on a PDF, and they're charging you $30 for them.
Oh, yeah. Yep. Holy hell. I've seen it I've seen it too.
I didn't know... I I swear, hand to god, I had no idea. By the way, I've now said wait for the lord to take me and hand to god. I'm not religious at all. I only spent a weekend in the South, and look at me already.
And so so I was down in Tennessee this weekend. So so I'm looking, and I'm like, oh my god. Like, this is ridiculous. Like, for... I am not lying to you.
The PDF that I saw, you could have just gone to any... And now that I'm thinking about it, I'm not sure that this isn't what they did. You could just go to any chat model and say, please explain to me how to do this in my life, and you would have gotten that PDF back.
And I'm like,
it's just $30. You can start... Would you like to be part of my Zoom call? It's weekly. Just 15 just $1,500 to be in our Zoom call.
And I'm like Yep. I'm like, is anyone doing this?
You know what? I... That's my that's my big question is I see these ads all the time, these posts all the time, and I'm like, I wonder if anybody is actually doing this. Like, they'll post testimonials and, like, client photos. And I'm like, is this real, though?
Like, there's no way to know.
Because I think they're just trying to trick, like, five people into doing it to pay for their boba tea.
And that's all they need. Yeah. Maybe. All they need is five people.
Listen, Brandy, let me just say right now for everybody listening. For just a $150,000 a year, you can call me whenever you want. I will get I will get I will get a phone number with a... That only you have, and 247, you call me with anything you want. You you have a pimple on your ass.
I'll help you look up how to get it off. Okay? You don't know how to do something? I'm happy to tell you. I don't know either, but we can chat about it like friends.
You wanna plan a murder? I'm not coming along, but I might tell you where to buy a shovel for a $150. Whatever you wanna do. I'm I'm starting a business right now. It's called Scott's Your Best Friend.
Okay? It's $12,000, a little bit a month. Call it $5 a week. Let's round up a little bit. You get your own private phone number to me, and it's paid paid yearly.
And weekends, nights, three in the morning, Christmas day. I don't care. Having sex with my wife, I'll stop. Okay? Swear to god.
Like All you need is just one person, though.
You people are whores is what I'm saying. Like, go get a god job. Are there not jobs anymore? I've been a podcaster a
long time. Apparently not.
I love that I'm complaining about this, and I have one of those jobs where I don't have to do anything. I'm like, you all go to work. I don't want to.
Oh, yeah. Anyway That's that's... I work from home, and so it's like whenever I go out in the middle of the day, I'm like, who are all these people, and why are they out? And why are they not at work? I'm like, oh gosh.
That's Brandy,
you're Brandy, you're getting old quick if that's what you're doing. Whenever I drive somebody during the day, I go, do these people not have somewhere to be?
Exactly. Yep.
My wife's like, where are you at? I'm like, that's a fair question, but I make a podcast that helps people. So... And I... It's also not lost on me, by the way.
I will... I... I'll back up a little bit. I know that some of these service, like, they help people. And if you have $1,500 and it helps you, then god bless you.
I think that's fantastic. And and I've said this so many times. I'm probably sick of saying it myself, but there's just gotta be a way to make a living without reaching into other people's pockets constantly.
Especially. Yeah. And it's... And the people that they're reaching into their pockets, they they don't have it themselves. Like, they are probably in such a desperate situation that they're willing to try any and everything to get out of it, and they're just getting deeper and deeper into it.
Yeah. Your PDF is no different than telling me I can put a $5 parlay on three things that happen in the NBA tomorrow. Maybe I'll get out of my problem. And may... And maybe you're in the same situation and you feel desperate.
But if that's the case, like, not putting it on one person, boy, what a sad state of affairs if we're all just trying... Know what it feels like to me? I know that I'm old, and so some of these things don't make sense to you. But, like, I was alive before there were things that you paid $10 a month for. Like, recurring charges didn't used to be a thing.
You didn't you didn't give someone a credit card and tell them, hey. You can take $12.50 a week from me or $10 a month or whatever. Like, that did... That's not how things used to work. And the minute people got okay with that, everybody started doing it.
It's Netflix. It's... You can rent
Everything is a everything is a subscription now.
You're renting your... Some people rent their cell phones. Like like
Oh, yeah.
I don't... I didn't know that was real. Like, I'm an adult. If I buy a cell phone, I go pay for the cell phone. It's expensive.
It's a one time cost. I I budget for it. And then that's not apparently how anything happens.
And have you seen, people can rent their... Like, a part of their driveway if someone needs a parking spot.
Please tell me that you made that up just now.
No. I promise you that you can... People are, like, renting out one side of their driveway for, like, $5 a month.
I wanna just tell you. My driveway is now for rent. Okay? I'm I'm just gonna get a a shirt that just says whore on it. And whatever you need...
You want pictures of my feet? God... Let's do it. Okay. I mean, I saw a girl the other day.
Like, she was on, like, a major show talking about how her OnlyFans work. And I was like, what is going
on? My gosh.
Oh, I'm like, what is happening? And and I... Again, I know people are in a situation. I understand the world's working the way it's working. People are trying to get by.
When I say what's going on, I don't think I'm talking about her. I think I'm talking about the system. Like Oh, yeah. Yeah. Yeah.
What what is happening? Like, you should be able to get up in the morning, go to a job, do a reasonable amount of work, come home, and live, and that's apparently not a thing anymore. So now
It's not. Yeah. We're all just You're right.
Stealing from each other. Like, I I mean, am I wrong? Like, you you send me $10. You send me 20. I'll get 5 from this one.
I'll do this over here. All you have to do is get. Do you know... Do you have any idea how many people I have on an email list?
And I can even guess. I'm sure it's
Don't even send them an email.
Yeah.
And every time I get into a business situation, they say to me, would we be able to send an email to your email list? And I go, I don't think so. I I think I've said yes one time to, like, to a small company whose thing I really like, and I wanna see it get some traction. So I was like, yeah. Sure.
You can send an email. And and I I was like, but I don't do that. And that person on that call said to me, you don't utilize your email list? And she... And I said, no.
She was... You... You're leaving so much money on the table. You have no idea.
There's people that that sell their email list.
Oh, I... Apparently, that's true too. I would also never sell your email to anybody. And so, like, I one time, I'm gonna send you an email. It's like, hey.
Look. There's this new thing out. I hope... You know, go check it out if you want to. It's an advertiser, and I'm trying to get it to you like that.
I guess what I just said probably sounds backwards. But, like, at the same time, like, I wouldn't... Like, if you came along and said just sell me those email addresses and we'll go do what we want with them, I'm like, no. Like, I'll send the email for the company. But I'm not I'm not letting them have your email address or access to it.
I lost business last year. I lost a significant amount of money last year by not letting them track you guys in my ads. Wow. So there's a thing I would never... Like, it's not a thing I would normally say out loud, but let me just start with, you're welcome, and then and then go on from there.
Okay? One of my... I mean, you'll do the math on who's not here anymore. But one of my advertisers said we need to put a pixel in the link so that we can track the people. And I was like, I won't let you do that.
Yeah. And
and and they were like, well, then we can't do business anymore. And I was like, well, I'm sorry then. We just can't do business anymore. I'm not letting you do that. So, again, you're all welcome because I needed that money.
But, like, it's it's gone now. And it's... And if other people ask me, I'm gonna say... By the way, in case they're all listening, don't ask me again or you're not... Like like like, I'm okay with the advertiser I lost this time.
But if the rest of you ask, you're gonna get the same answer. So nobody's asked, I just wanna say. But, like, at some point, somebody's going to. And I'm I'm like, no....
They don't because I completely agree with you. I don't... It's not right.
Whole world's upside down. And you're out there trying to... Even, like... By the way, I'm... If you wanna know where my irritation comes from, you're trying to help two people meet each other and and and add a little bit of friendship or camaraderie to their life.
And you're so hamstrung by laws and insurance and probably things that half of them... You probably think this is ridiculous. We do not need to be doing this. But, like, okay. There's regulations.
I gotta do the thing. Right? And it takes up time and effort and resources. And what it really does is limits people from meeting each other and doing the thing you're trying to do.
Mhmm.
And and that's that's gotta be done that way. But the rest
of this is okay? Yeah.
I I... Oh, okay. I I don't know. I'm sorry. You're my second interview today.
I was I was already heated up before we started in case you're wondering.
No. Nope. I... It's backwards.
Yeah. I don't know. I'd be... I like that you're out there trying to do something good. Please keep going.
It's fantastic. I am gonna keep... I don't know what it is I do anymore, to be perfectly honest with you. I'm so sick of social media. It's making my it's making my god hurt behind my head.
I can't I can't do it.
Yeah. I really just... It... It's it's it's so meaningless that I believe if we all just stopped, no one would notice. Like...
Yeah. I I don't think I don't think that boy. Remember when I said earlier, if you're not really making a good podcast, if you don't stop and wonder once in a while, like, what... I don't Oh, yeah. I don't know that my social media is for the listeners.
I think it's so that people who do business with me can see that I'm popular.
Yeah.
I think that's what it's for. So then I don't I don't understand what the point is. Like, I have all I have all this, like, survey data about people who listen to the show and all the great outcomes they have, and I share it with everybody that I that I, you know, am in business with so they can see it. And they're... Everyone's like, oh, wow.
That's really amazing. That's great. That's great. But what they... But when push comes to shove, it's more about, like, if I collaborate on this video with you, is it gonna get more views or not?
And then I don't know what those views mean because, yeah, YouTube just announced that a view is now one second long.
Oh, man. I'm not familiar with YouTube at all.
I Can you imagine? And and I think the average is three to six seconds on Instagram and TikTok. So I'm not sure what you can really relay to somebody in three to six seconds, but I don't think it's much. So Mm-mm. Anyway, alright.
I'm, I I give up. I'm done. What's the website? I'll put it in the beginning too, but what's
the website? It's brave1.org.
Brave1.org. Okay. And and after I've bemoaned social media, what... Do you have... Are you on Instagram or any of those places they can find?
So Facebook and Instagram and TikTok. It's all at join brave one.
At join brave one. I saw, I'll put the link in the show so people can find it too. And on the website, there'll be a a page where they can listen to you. I'm sure they'll listen more to the beginning of the conversation than the end. But, but there'll be a link there as well.
I saw yesterday... Brandy, I'm gonna let you go after I tell you about this, but I'd love to hear what you think. Mhmm. I saw this, like, long interview about, like, some of the more concerning parts about AI use. Right?
Yeah. And in the middle of the conversation, the interview stops abruptly to serve a DraftKings commercial. And I and then in the comments, somebody said, there is something incredibly odd about the person making this podcast talking about the concerns for the world they have. And then there's a short pause and then a DraftKings commercial. Like, the Wow.
The entire thing... The the commenter said this all feels so dystopian.
Yeah. That's exact... Yep. That's exactly the word. Yeah.
That was that was it. Like, this is the Hunger Games. Like, what are we... What times are we living in? I completely agree with you.
Yeah. I'm worried about what's gonna happen with AI comes. By the way, you know, sure, marital strife, divorce, suicide, depression, all, like, I think all proven to go up with gambling. And Yeah. And yet, like, in the middle of, like, hey.
Be worried about the world. The machines might take over. But you know what? You know, you get a $5 bonus bet right down the bottom. I'm like, wait.
What the hell just... I I I thought the same thing when it popped up. Said, what the hell just happened? And then all of a sudden, like, I I looked at the comments and, you know, the people were just like, this is crazy. Yeah.
And I don't know. Like, it's it's a really... And I can't... You can't even blame the person making the podcast because I get where they're coming from. Like, I'm...
I think I'm pretty lucky. Like, at least my advertisers are making devices that you need
that Exactly. You were gonna It's... Yeah.
In fairness, you were gonna buy anyway. Like, you know,
you're not trying to convince them to get something that they don't need.
Yeah. I'm not trying to get you to... Yeah. I don't know. Get essential oils or or something.
Like Yeah. This is the second time that's come out today for some reason. But, like, yeah, I mean, DraftKings, like, in the middle of, like, that, I was like, what is going on? Yeah. I...
And I I I... The other day, it was, I'm like, oh, the guy from Jumanji is trying to sell me a a betting app. And I was like, this is all very weird. So... Alright.
I'm I'm done. I I give up. I'm I'm gonna... My next episode is gonna be about something happy. It won't be with you, Brandy.
And I'm so disappointed that we can't tell your last name story to people because we're, you know Oh
gosh. Yeah.
Keeping a little private.
Sorry everyone missed it.
Alright. Hold on one second for me. Seriously, I think what you're doing is awesome. I'm sorry that I went on this tangent with you.
But No. No. You're fine. I... Thank you so much for the conversation.
I was nervous going into it, but I've read other people like, oh, I was so nervous, but Scott made it seem like a really natural conversation, and it was. It was. It was a lot of fun.
Oh, you a good time? Oh, thank you for saying that before the recording stopped because people will be like, oh my god. He railroaded her at the end and wanted to talk about his thing that he was upset about. I I I I see you all out there. I don't care what you think.
Start your own podcast. Have your own opinions. Alright. Goodbye. Hold on.
I'm ready. To learn more and see if you might be able to get Twist from the pharmacy and try it for free, head to visit.twist.com/juicebox. That's visit.twist.com/juicebox, or give them a call at 18774. That's +1 (877) 489-4478, and tell them Scott sent you. TWIST requires prescription and is indicated for people with type one diabetes six and older.
Arden has been getting her diabetes supplies from US Med for years. You can as well. Usmed.com/juicebox or call (888) 721-1514. Many thanks to US Med for sponsoring this episode and for being and for being longtime sponsors of the juice box podcast. There are links in the show notes and links at juiceboxpodcast.com to US Med, Twist, and today's other awesome sponsor, the Eversense CGM.
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I don't like saying this usually because it dates the ad, but right now, there are 86,000 active members. 86,000 people in there who might have your experience, know what to say, just be a great shoulder to lean on. Don't be too proud to find a community. It really does help. And it's completely free.
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Read the full disclaimer
© 2007–2026 Juicebox Podcast. All rights reserved.
#1975 CGM Burden
CGM Burden
Erika Forsyth is back. She and Scott take apart the paradox of CGM data — why more information can make you feel worse, and how checking every five minutes starts to run you.
Jump to a moment
- The paradox: more data helps the numbers and can hurt the person. CGM access reliably lowers A1c and raises time in range. Erika's question is what else comes with it — because the same stream that makes management possible also makes it possible to watch constantly, and watching has its own cost.
- The belief underneath the behavior. Her framing is a thought most people never say out loud: if I can see it, I'm responsible for responding to it. She's careful that hypervigilance isn't automatically a problem — if it's working and you don't feel anxious, that's fine. The useful test is whether you feel capable of not checking, not whether you check.
- Why it's hard to stop. Scott compares waiting for the next five-minute reading to the part of the brain that enjoys gambling, and Erika agrees it can temporarily regulate your nervous system — which is exactly why it repeats. Being right once also licenses the next check, because catching something proves the watching worked.
- The number is not a report card. Both land hard on the idea that a bad diabetes day becomes a bad parenting day. Erika's counter is that you're doing the best you can without living in your child's body, and Scott adds that you started with whatever tools and knowledge someone handed you — so judging yourself against data you couldn't even see a decade ago isn't a fair trade.
- He tells the story he usually doesn't. Scott describes the first time an alarm went off overnight and the walk to Arden's bedroom where he was certain he'd killed her — and is honest that those years lasted longer than he wishes they had. Erika's point in response is that the season of hypervigilance is a season: it feels permanent while you're in it, and it does end.
- Mental wellness series with Erika Forsyth — The full Scott and Erika catalog on the emotional side of type 1.
- Erika Forsyth, LMFT — Erika's practice — licensed in several states.
- Diabetes Pro Tip series — Episodes 1000-1025 — settings, timing, and food impact, the three things Scott points to.
- Listener survey results — What listeners report about anxiety and management after the podcast.
Every word of the conversation
Cold open & sponsors0:02
Welcome back, my friends, to the diabetes show that never ends. Remember this, nothing you hear on the juice box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan or becoming bold with insulin. If you'd like to help with type one diabetes research, it couldn't be easier for you to do that. T1dexchange.org/juicebox.
Go there and complete the survey. That's pretty much it. T1dexchange.org/juicebox. US residents 18 and older have type one. Those are the three things you need to be.
T1dexchange.org/juicebox complete the survey. And these answers, by the way, are not difficult. They're questions you know the answers to. Your information goes towards helping. Thank you so much for considering.
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Erika is back1:53
Erica is back. I know you all... You send letters. You send notes. You go, Scott, where's Erica?
I say, I'm trying. She's very busy. Very, very busy. Professional woman has children. She's married.
There's a lot going on. Erica, thank you. I appreciate you being here.
Thank you. Must have to be here.
Yeah. You must have missed me. No?
Yes. Of course. I mean, well, we had the whole summer. You had a busy summer of conferences. We did our our summary or brainstorming session a couple weeks ago.
It's fun. I sent a note to a friend recently. I won't say who it was. And I just texted and I said, hey. Are you okay?
I've been worried about you recently. And they said, why have you been worried about me? I said, well, you haven't talked to me in a while. It must be upsetting for you.
But I'll
They laughed, I laughed, and we chatted. I don't really believe that people get upset when they haven't seen me in a while. That would be insane. Tell everybody what we're gonna talk about today.
Okay. So we... I know we originally discussed this in our brainstorming session about... Around caregiver distress, specifically around the burden of knowledge or the burden of knowing as a result of CGM data. But I think as we talk about it, we can also you can think about it through the lens of someone living with diabetes as well.
But most of it might might be discussed from the caregiver perspective, but just wanted to note that. And before we get into it, I want to definitely affirm that I am a huge fan of my CGM, and I am very grateful for it. In fact, I I don't know if I've shared this. I only started wearing a CGM around at least the the the Dexcom about eight to nine years ago Mhmm. Which I know is is fairly recent compared to, like, your daughter has been on it for twenty years or something.
For as long as as long as it's been available, I think we've had it. Yes. Yeah. I mean, maybe not that very first one, but I I think I think what's interesting... What...
I mean, there's a lot that's interesting about you. But one of the things that's interesting about you is that you have had type one diabetes for so long. And even though we haven't picked through it, I infer through our conversations that you had a lot of struggling years with it. And and it's fine because you you let your personal stuff out just enough once in a while, but you're not like... You don't dig too deep into it all the time.
And so it's interesting because if I met you today, I wouldn't take you as a person who had only had a CGM for the last eight years. Or, like, sometimes I'll interview somebody who's doing so well and their their understanding is so clear and they'll talk about their variability being fantastic and their a one c being low and everything's right. And then I say, oh, when did you start... Come across all this? I just just recently had a guy on who was using AI to tune his loop data, I think.
And, you know, he's just so together when he's talking about it, but has only really started to look into it in, like, the last couple of years. And I... And that's always... I don't know if I should be surprised by it. I am generally surprised by it when it happens.
And so I feel like I've known you long enough now, and I know how you are today. It's hard for me to imagine you before. Don't if that makes sense or not. And I guess that's probably a testament to how far you've come and how much experience you have. But, anyway, I I know I know you use a CGM, and we're not trying to talk anybody out of using a CGM.
Like, they're
No.
Really fantastic. There is other stuff that comes with it, and that's what we're gonna talk about
right now. Well, then that's so interesting. Just on that note, I also notice a common phenomenon of people who have been living with type one for twenty, thirty years. And either because of access or doctors not bringing it up or engaged in what is current in terms of technology might not even have the opportunity or or know how about... I was on a different CGMs prior to being on the DexCom here and there for a couple years, but didn't even actually know about the DexCom till probably ten years ago.
Before CGM, and the fingers that worked best6:15
Even that
Because it wasn't even proposed to me.
Right. Right. Even that, like, here and there for a couple of years. Like, if I said to you now, hey. You're only gonna wear your CGM every couple of months.
You'd be like, no. That's not what's gonna happen. I'm gonna wear it
all yeah.
I'm gonna wear it all the time. So back then, you were sort of like, oh, I wore it, then I took it off, then I did this with it.
Yes. Yeah.
That's... It's just... I don't know. I find I find that fascinating. Maybe at the end of all this, Erica.
Maybe it'll be one of my last interviews. Well, we'll just throw away this, like, professional facade, and you can cry and tell me your whole story. It'd be nice. Okay.
That sounds like so much fun.
Oh, yeah. You'll love that. Few years from now. Don't worry. I'm not...
I got time left. But at the end, we'll do that.
Well, you know what also is interesting? We... I don't hear as much for people who do use the CGM, like, growing up, and I'm... I think I've talked to Jenny about this. Our fingers were calloused, you know, from finger pricking.
And I remember I was told in the beginning, I was around 12 years old, I only finger pricked on my left hand for years because I didn't want to lose sensitivity. I didn't want to damage my nerves on my right hand because I'm right handed. Yeah. So I don't... And for those of you who choose to not use a CGM, maybe still have that.
But it's just something I don't hear as much about is that the calluses and the nerve damage.
Oh, that's so interesting. That's a... Was that direction from a doctor or just common sense? Like, I'll just... I'm losing the ability to, like, be dex...
Like, were you able to be dexterity? You just couldn't feel? Or is it... Was the concern that it could happen?
I I think it was the concern that could happen. So I just... I don't I don't really remember if I was directly told from a, you know, a doctor. But I just somehow only did it. It was easier because you're using your right hand to finger prick on the left.
And I just eventually thought, well, I wanna spare my right hand from having any issues.
Yeah. I would say I would say it's it's a little it's a little detail about raising a kid with type one. But when you're checking blood sugars all the time like that, I was always careful to move around on fingers. But she wouldn't want me to because there were some fingers that were
Oh, yes.
That that she couldn't feel it as much on. And so I'd be like, here, give me this. And she'd be like, no. No. And then she'd she'd give me the finger that she wanted me to use.
Give me the finger. Maybe she was. Give give me the give me the finger that she wanted me to use because it wouldn't hurt as much. And and it's interesting too. Like, did you do do you do the tips of your fingers?
No. Do the sides?
Always the sides. Sides. Never the... That was... I feel like instructed, but the sides and the third and fourth fingers were always the best.
And now I know there are great devices that you can test elsewhere on your body as well. So, thankfully, technology has improved that.
This episode is sponsored by Tandem Diabetes Care. And today, I'm going to tell you about Tandem's newest pumping algorithm, the Tandem Mobi system with Control IQ plus technology, features auto bolus, which can cover missed meal boluses and help prevent hyperglycemia. It has a dedicated sleep activity setting and is controlled from your personal iPhone. Tandem will help you to check your benefits today through my link, tandemdiabetes.com/juicebox. This is gonna help you to get started with Tandem's smallest pump yet that's powered by its best algorithm ever.
Control IQ plus technology helps to keep blood sugars in range by predicting glucose levels thirty minutes ahead, and it adjusts insulin accordingly. You can wear the Tandem Obi in a number of ways. Wear it on body with a patch like adhesive sleeve that is sold separately, clip it discreetly to your clothing, or slip it into your pocket. Head now to my link, tandemdiabetes.com/juicebox to check out your benefits and get started today. I used to hate ordering my daughter's diabetes supplies.
I never had a good experience and it was frustrating. But it hasn't been that way for a while, actually for a number of years now, because that's how long we've been using US Med. Usmed.com/juicebox or call (888) 721-1514. US Med is the number one distributor for Freestyle Libre systems nationwide. They are the number one specialty distributor for Omnipod Dash, the number one fastest growing tandem distributor nationwide, the number one rated distributor in Dexcom customer satisfaction surveys.
They have served over one million people with diabetes since 1996, and they always provide ninety days worth of supplies and fast and free shipping. US Med carries everything from insulin pumps and diabetes testing supplies to the latest CGMs. They accept Medicare nationwide and over 800 private insurers. You can find out why US Med has an a plus rating with the Better Business Bureau at usmed.com/juicebox, or once again, just call them. (888) 721-1514.
I don't know. You just triggered that memory.
Yeah. No kidding. It's funny how it sticks with you too because I still... If I... I don't know how often I check Arden's blood sugar with a meter anymore, like me personally, but sometimes overnight, you know, and I still immediately without thinking, like, milk her finger.
Like, do you know I mean? Like, squeeze it from her hand up to the tip to try to get blood into it so that it'll go easier. And... Yeah. I I don't think that's a skill I'm gonna lose anytime soon.
Alright. So Okay. How do we how do we dive into this?
Okay. So I think kind of it is a general summary and, you know, theme is that, yes, CGM data is... Serves as kind of main two two things. Right? It...
It's... Yes. It's a tool for safety, but we know that it can also become a source of added stress and distress. And it isn't it isn't that we're getting the data twenty four seven. That isn't the issue.
Like, that's... As we know, it's a benefit, and we can decrease our our a one c and increase our time and range, you know, often as a result of CGM data and use. But when we start to use it, when the nervous system becomes reliant upon access to the data and using it as a kind of a regulating mechanism to feel safe in your body. So that's what we're gonna talk about, just noticing what does that look like? What does that feel like?
The paradox of more data12:39
What is this paradox, right, that that can occur with having access to more data?
Okay. I Okay. Gonna say right before you jump in, if you ask me to describe what a CGM does, I wouldn't say safety first. I just... I realized that when you were talking.
When you when you... If you were to ask me what is a CGM for, it's to make better decisions about insulin. It gets a management tool to me. Like, I know it does the safety part, but it's not how I think of it. Now if you would have asked me probably years ago, I don't...
I'm trying to think back to whether or not my... Because I had so much struggle trying to use our... Like, figure out how to handle Arden's blood sugar before CGMs that when I got it, I immediately thought of it as, yeah, I think of it more as a management tool than as a safety device. Get freely understanding what it is. But, like Mhmm.
Okay. I'm sorry. I didn't mean that. I just No.
That's good. That's interesting.
Go ahead.
So so, you know, back back in the day before CGMs, we... There was not this continuous access to data, and that probably felt scary. I I was... I've been thinking a lot about my parents in thinking through this episode of, like, how did they... Did they have it easier because they didn't know and have access to this information in some ways?
Obviously, they probably felt a lot more stressed and nervous than having, you know, two children, let alone one, not knowing where they are and their blood sugars. But that also wasn't even an opportunity. So I can't even... It's not even maybe fair to compare. Yeah.
Like... So... Yeah. So we we shifted from not having less information to more, but that can also feel just as scary sometimes. And so as you were talking about this kind of empowering data is helpful.
And that's interesting that you didn't think that's not your first thought. I'm gonna uphold that as the safe... It's not a safety mechanism. But I think the the paradox is what do you... When you have all this information in front of you, often, you feel like you have to do something with it.
Mhmm.
Right? So there... That's there... That's the burden. So you have...
“If I can see it, I'm responsible”14:54
You could have this thought, like, if I if I can see it, then I'm responsible for responding to it. I'm responsible for doing something with it, or perhaps I'm using it to help me stay calm in a regulated state.
Okay.
Okay. So what occurs... And, also, I wanna give a caveat as we talk about these different themes around CGM data that there are certainly stages when being hypervigilant around the data is very normal. And and if you are operating in that way and it's working for you and you do not feel anxious, then being hypervigilant as a caregiver or person with diabetes, that's okay. I'm not...
None of this is trying to trying to say it's wrong or you shouldn't be doing it, but just something to notice. Right? Okay. So hypervigilance can look from the outside and internally as the parent like you're being a really good diabetes parent. Right?
Because you are... You're... Maybe you're checking the CGM repeatedly. You're you're looking at it every five minutes for the display to change. You might have it up in multiple places, you know, at work or at home, on your laptop or computer, on your watch, on your phone, on the SugarPixel, SugarDash, multiple locations.
Again, none of that is wrong or bad.
Mhmm.
And that might feel like, okay. I'm I'm a good parent. I'm always I'm always checking. I'm always aware. You might be watching trends to maybe make dosing adjustments.
You might be anticipating or catching the next glucose change. Like, you're seeing the arrow go up and you're watching it every five minutes, and you're gonna try and catch it with a microdose or or half of a gummy. You're looking for patterns, and you're always maybe mentally calculating what's gonna happen next. So, again, these are... None of these behaviors are wrong or bad.
But what I... I'm wanting to encourage you is, you know, first of all, these these behaviors are gonna be rewarded, right, because you are maybe catching the low or catching the high or keeping your child in what feels like a very medically safe range. But what happens is that it might evolve into a form of anxiety without even knowing it. Okay? Because you you have this framework that, you know, I'm not I'm...
Maybe I'm not anxious. I'm just staying on top of things. Or maybe I am anxious, and I'm staying up top of things, and that's okay. This is my new life. This is how I'm gonna, you know, act as a care and be the best parent possible.
Can you choose not to check?17:39
So what we're wanting to encourage to kind of bring the awareness around noticing this distinction is whether you feel capable of not checking. Right? So we're not saying
It's not a compulsion....
Am I saying... Yeah. Yes. Right.
Yes. Okay.
Okay. Should I keep going?
I I would... I was gonna throw in here that I remember having a conscious, like, thought after Arden was diagnosed, keeping in mind that it was, you know, before CGMs. I thought, oh, I didn't expect this to happen, but now one of my children has this problem. I guess this is what's gonna kill me. Like, because...
Okay. Like, I guess I'm gonna die earlier or have more health issues or not take as good care of myself because now I am involved in this process that human beings are not supposed to be involved in. Like, I'm acting like an internal organ. Right? Like, a thing that is working mindlessly every millisecond for most people, I'm now gonna have to pay attention to and not nearly as as fine tuned and as as micro or as as I should be because that...
I can't I can't mimic what the body's doing, but I'll just have to pay attention to it as closely as I can and do as much as I can. That's probably going to kill me. But I found myself feeling like, well, okay. Well, if that's it, then that's what has to happen because Arden wasn't asked to be born. She certainly didn't ask for diabetes.
I asked for a child. Here she is. This is my responsibility. Now I I don't I don't I don't expect everybody to feel that way. As a matter of fact, I would imagine some people would look and say, no.
I... Like, you know, this is what's happening. I've heard people say, like, you know, it's their thing. It's gonna do what it does. I'll be as supportive as I can.
I was I was I was fully ready to step in front of that that that bus and and was doing it. I'm very glad that I don't have to do it like that any longer. But maybe because that was my mindset coming in, the data doesn't feel overwhelming to me. It feels relieving to me. So...
And maybe it's where you come into the data to some degree. Although, I'm assuming some of it's gonna be your predisposal to anxiety and other issues like that. But for me, a person who doesn't feel particularly anxious, I was... I don't know. Like, I guess that's it, really.
Like, I was ready to give my life for it, and this is way better than that. So, anyway, I'm sorry. I I just... That's that's what I got so far. I'm jumping now.
I'm jumping out now because you're doing such a nice job.
It's good. Yeah. It's good. So I think... And and of course, I think it also can be said that we need to be vigilant as people with type one or caregivers or people with diabetes.
There is an expectation or a purpose around that. So I think that the challenge is recognizing when that the vigilance has shifted into hypervigilance, and you have that feeling of needing to constantly monitor. But I also wanna recognize that as a caregiver for a child who's two years old, that there's probably no other way
Yeah.
In that in that period of time. Or when you're changing devices or growth spurts or, I don't know, fill in the blank with a very... Variability where maybe you've been in a kind of stable place and things have shifted. And so there might be that season of hypervigilance from the vigilant perspective. So just wanted to normalize that too.
Okay. So what what happens in... You know, what's been described as the... As a feedback loop type of system. Right?
Obviously, we have it as a feedback loop for our automated insulin delivery systems or whatever algorithm you might be using. If you are with a CGM, there is that infrastructure in math of an algorithm, but noticing what is that doing for you in your nervous system. So you are unsure of what your blood sugar is or what your child's blood sugar is, noticing what is going on in your body. Is your heart racing? Is...
What's happening in your body while you wait22:07
Are your thoughts racing? Are you feeling actual physical symptoms, other physical symptoms of anxiety, sweaty palms? Even... I'm talking about for, like, those either minutes or moments or in between the five minute Yeah. What's word?
Waiting... Change. Yeah. Waiting for that revolution to go around one more time.
Yeah. Yes. So noticing what what is going on within your body. If you are someone who's looking at checking every five minutes, you check it. You you might experience that temporary relief.
Okay. Every... You know, arrow's stable. They're in range. I'm in range.
Then you... Then the next time you check, the glucose is you... Maybe you have an arrow up, arrow down, and you have that increased anxiety, which then reinforces that belief system. Oh, I gotta keep checking.
Mhmm. Oh, yeah. Oh, the idea of, like, what's about to happen, I think, is more damaging than... I don't know how to say that then. What is happening?
Because you're you're sitting there feeling like, well, I just need this thing to spin around to the fifth minute, like, to pop up again. I mean, I'm certainly not the only one who's, like, pulls down on the screen to refresh the Dexcom app to get, like, a number when I need it. Right? Trying to rush it even though it's not gonna work. And then it pops up.
And as soon as you have the number, even... I find that even if the number is what I was hoping for, there's still a voice in your head that goes, well, yeah, but five minutes from now, like, what could I... It's it's almost like it's almost like whatever part of your brain that would enjoy, like, gambling Yeah. Is tortured by this part of it. Like, the...
The part of your brain that likes gambling23:45
Like, let me just spin it again and see what happens. I I I guess there's gotta be a connection there. Right? Because if you put money to it and you set... Because...
I mean, what is a what is a a a slot machine?
A slot machine.
Yeah. It's it's just like, oh, I... You could put in your life savings and pull on it and go, oh, no. It's okay. The next time it'll hit.
I'll do it again. I'll do it again. So whatever it is that makes you feel like the next time is gonna give me what I want,
there's not a one, two, three step fix.
Oh. Oh, was thinking we could, like, design a new UI system that wouldn't give people that feeling, and then maybe I could finally retire. But... Okay. No.
Go ahead.
Well, maybe you can try that. Yes. I think... Well, it's not necessarily fixing. It's having this awareness, right, of noticing, yes, it can temporarily regulate your nervous system.
You do have that. Okay. Phew. Yes. We gave that huge pre bolus or, oh, they're out in recess, but they're they're still in range.
Or I'm working out, and I'm still in range. So you you get that feedback. Your nervous system says, okay. We're okay. He's okay.
We're safe. Right? So then you... So, yeah, it works in that way and re... And establishes that firm belief that by looking and checking and getting the number, I'm I'm gonna be okay.
But then, right, as soon as you look and the arrow's down, you have that thought of, oh my gosh. You know, the... I'm... They're dropping. I'm not okay.
And then that creates that stronger urge to keep checking because it's now become... It... It's also... It's the reassurance that things are okay, but then also is the trigger for things are are not okay. I'm in distress.
Right? So
Unless your personality is such that you're like, oh, finally, this situation needs me. Like, I can see how this could, like... I could see how this could poison all kinds of personality types. Right? Because now suddenly if something needs to be done, it's like, well, here...
Finally, I knew it, by the way. That's also what a lot of people will joke with me when they're when they're interviewing me. A lot of people will... This won't... I hope this doesn't seem like a left turn.
They'll say when my... Before my kid was diagnosed, I saw all of these things. And I would go to my spouse and say, I'm telling you they have diabetes. I saw this, this, and this. And somebody would say to them, you're being silly.
You're looking too closely. A lot of times nurses get told, like, it's because you're a nurse. You think you see it in everybody. But then eventually, the... Somebody gets diagnosed, and there's almost of a feeling of, like, see, I told you so.
I knew I saw that. And because I was right, it gives you license to continue to be that hypervigilant because you believe, like, oh, I was right. I'll be right about the next thing too. Yeah. This is terrible.
How crazy is it? How crazy is it that something this valuable can be this valuable and this damaging literally at the same time? Ugh. I'm sorry. Keep going.
Well, I almost... I, yeah, I just feel like it's it's... There's so much benefit, but sometimes I almost wish that there'd be, like, a, you know, a user beware this might increase anxiety kind of thing. I don't know. Right.
It's a silly thought. But it happens for for people also living with it for years and years and years and years, and they didn't realize the the fluctuations that were occurring
Mhmm.
When they were maybe in range managing well. Right? So it can it can skew things in the opposite direction, but we still really love c... CGMs. Okay.
Yeah. So so... Yeah. So it can... The...
This distinction can shift from I can check to I need to check. And, again, if you're hearing this and you feel like, well, of course, I need to check. My my daughter's... You know, the... They're preverbal or they don't know what a low feels like.
Yes. For sure. There is that sense of needing to check. But noticing, again, this isn't like the fix, but just noticing in the background, what are some of those beliefs that you might start to experience in your mind, right, that if you don't check, do you have the thought of you're being irresponsible? Right?
Like, if you pop in the shower for ten minutes and you miss one of the five minute readings, do you get out of the shower and maybe the arrow's going down? Are you then feeling like I'm... It's... If I didn't notice or I I took a break for five minutes, and now I'm... It's my fault.
I'm an irresponsible parent. You know, a good parent would have been watching or having the the the alarms going off while I was in the shower. I should have known. And then ultimately, you know, if my if my child's having a bad diabetes day, I'm having a bad parenting day. Yeah.
A bad diabetes day, a bad parenting day28:57
And so again, I guess.
Okay. Do you know the feeling of... I'm sure you must, but it's the first time that you sleep through the night and never wake up once overnight. And then you wake up, your eyes open, and your first conscious thought is, I didn't wake up last night. What if Arden's dead?
Like, that's that's the first thought. Right? Like... And then she's not. And then that pressure lives with you forever.
Like, it feels like you were on watch in a foxhole and you let your buddy sleep and you said, no. I'll stay up. And then you you fell asleep. And when you open your eyes and everyone's not been shot, you you... The pressure of, like, how you almost let everybody down Mhmm.
It rewired me. Like, I think everyone listening knows what it feels like to wake up the first morning having meant to be up overnight and it not happening and that that panic. I bet you I I I bet you I described it perfectly. Does it happen to you when you have diabetes?
That was a great analogy. The... Does that feeling
I know it doesn't.
I I was saying
Because it's for you.
Probably not the same because I know... Was trying to think about this as a parent. My two girls do not have type one. But that feeling of... There's that guilt and blame and pressure to keep your child safe.
Yeah. Right? Now in in the world versus diabetes, it is different. Right? Like, it is different.
So I cannot fully understand what that feeling is like as a parent because I am not... Diabetes is in my body. Right? So I know what it feels like. And, thankfully, my body wakes me up when I'm low.
Also, you wake up in the morning alarms. You're alive. So there's no, like, I wonder what's going on. Because the walk... I don't wanna sound, like, overly, like, dramatic.
The night he thought he'd killed Arden31:18
But the first time this happened to me, my walk to Arden's bedroom, I thought I killed Arden. Like, I I did. Like, I'm gonna go in there. She's not gonna be alive. I did this.
Like like... And by the way, how ridiculous is that? Because people need to sleep. You you you know what I mean? Like like, how am I supposed to stay awake for the rest of my life?
Like... And then that pressure hits you. Like, I'm like, by the way, this was before CGMs. I used to get up and check her blood sugar a number of times overnight. And and, anyway, like, it's just...
Yeah. I... It's not the same for you. I just don't know what your version of that is. Maybe it's not around sleeping.
Maybe it's something else. I don't know. Maybe that's too far off topic. That'll be for the
episode we do with
you right before I quit. We'll do it then.
Yes. I think it's the fear. There's that... It's the it's the burden of responsibility
Yeah.
As being the caregiver, the the parent to keep your child alive.
Let everybody And I let everybody down. Like Yeah. We... I'll share something, like, reasonably personal, but I I talk about enough on the podcast that Kelly and I are thinking of moving as, like, when we retire. Right?
But we're not gonna... We're thinking of moving and then working and then retiring. Not like I'm trying to retire right now. I'm too young for that and not interested. But we spent last weekend looking at possible places to live.
And we were in this one house, and I said to her, I didn't... I said, we were getting ready to leave. And I said, let me run back upstairs. I didn't see the room on the left. And I went upstairs, and I went into the room, and I thought, oh, this would have been a great bedroom for Cole when he was younger.
And it's not that I don't live in a reasonably nice house. I'm not trying to say that or that my kids came up in squalor or anything like that. Like, I'm certainly don't. That's not the case. But still standing there, I thought, oh, I let everybody down.
Like, I didn't make the possibility of this happen soon enough. Like, if I could have made this happen ten years ago, we all could have come and lived here together, but now because I didn't do that, he's 26 and she's 22, and we're gonna move away, and this isn't gonna be their center. And I messed up, like, the staging of my family to set up the last part of my life. Had that thought in a split second. I was like, oh, I did it.
I screwed up. I screwed the whole thing up. Like, I I I... Even though we're here now, I got here too late. I just...
I did. I showed up with the fire truck after the after the building was gone. I was like, I did. I'm here. And everyone's like, nope.
Sorry. House burned down. You screwed up. So, anyway, we go down... I go downstairs.
We go outside the... We get in the car, and she looks at me, and she goes, are you okay? And I said, I I think I was crying. And she goes, what's wrong? And I was like, I let everybody down.
And she's like, what are you talking about? And then I told her and she's like, you're out of your mind. And I was like, I'm like, no. I'm like... Anyway, there's...
It's... Whatever that feeling is right there, it... I've I've had it so many times around diabetes. I can't I can't count all the different places where it's existed. And at the same time, I can also count one more time that I overcame that feeling.
Right? Like, oh my god. I almost could... When I got to that room and she wasn't dead, I was like, I didn't almost kill her. I slept through the night.
This is ridiculous. And then I hear old heads talking about, you guys, man, we live without these things forever and blah blah blah, and you don't even know. Like, I... Everything's fine. And and I thought there's gotta be some blend in there of everything's probably gonna be okay because we've done a lot to get ready for this, like, preplanned.
We'll still be vigilant. But if something does go wrong and this is the leap you have to make in your head, I think as a parent of somebody in this situation, said if it really does go wrong and I have done everything that I could have done, it's not my fault. Like, I didn't let my family down by not being able to move ten years ago. Right? Like, I...
That's crazy. When you get to that place, it's so, I don't know, relieving. Like like, I'm happy to be in that place with diabetes where I I can firmly say out loud, I do everything I can to stay educated, to help Arden, to be ahead, to put stuff on her that'll help her. And if something should go wrong, it is... It's not my fault.
And it's not her fault. It's the circumstances. Right? It's hard to think of it that way, but that's the truth. Having said that, probably nothing's gonna happen to her.
So what am I gonna do? Live my whole life tortured about like that? And, anyway, I don't know what what point I was able to give that part away, and I'm also not sure if I would be this thoughtful about it if something actually happened to her. But at least it's a fake it till you make it kind of a situation. And I don't know what making it means.
Like, I think the only success around being the parent with a child with type one, I think the only real success I'm ever gonna feel is if I die, and she's still alive when I die. I honestly think that's gonna be the only way I'm gonna feel good about this, is if when I'm closing my eyes, I look up and go, she's still here. And I'll probably, with my last breath, think, god, I hope that keeps going like that. And who's gonna help her? And that's...
I swear, like, that's just how it feels to me. So... And I'm fairly emotionally regulated even though I did cry in a house. It's not mine. Also, didn't really like the house even.
That wasn't even the point. So I think... I'm sorry. I've gotten this off track.
No. It's it's so... It's good, though. And I think that what it's like the the shame is so strong and the fear is so strong
Yeah.
That shame is just right there ready to to, like, knock on the door and inhabit your life
But is it is it waiting every five minutes if you're staring at the CGM like that?
Right.
Right. Which is why I tell people all the time, I set limits on that CGM. And if it doesn't beep, I don't look. You gotta get to that place. Anyway, I'm sorry.
I took I took you
out of No. That's good. And
I took out of your pace.
The the I do want to emphasize as you're sharing these anecdotes and and stories that the caregiver burden, I I do believe that it is. It's way harder to be a caregiver to a child living with with diabetes than a person living with it because of all of those feelings and thoughts and not being in the body.
Yeah. You have no idea. You're guessing about everything Yeah. All the time. Not just about the physical part, but about how they feel too.
You're guessing about the whole thing constantly.
The whole thing. Yeah. The whole thing. Right. So I just...
I don't know if I've ever said that before, but... I do
Thank you.
Believe that that is... Yes.
It's nice.
It is hard. Okay. So what what do we do next when this number, the data, or even the, all the things that you're looking at in the reports is a reflection of how you're doing as a parent. I know we've talked a bit about this around the sense of agency and autonomy, particularly in the beginning when you're trying to figure it out and you want to have a sense of competence, and it becomes not only how well you're doing, but how well you're feeling inside as a parent. And so when you look at the time and range percentage at the end of the day, which I would maybe recommend if you're doing that every hour or every day, maybe pulling back a little bit if you're able to at a certain stage.
When the number becomes a report card39:18
If you're noticing that feeling of, oh my gosh. They are in this percentage time and range. I did a terrible job today as a parent because you are doing the best you can, not living in your child's body guessing what they're doing and what they're eating and how they're interacting, particularly, you know, as they're at school. Yeah.
I... Can I just say that outcomes are not indicative of effort sometimes? And I think this might be one of those situations. You know, like, to look at the end and go, oh, the time and range isn't what I wanted or whatever. I'm a terrible parent.
Those two things are not connected. A terrible parent wouldn't know what the time and range was and wouldn't be looking. You know what I mean? So, anyway, your outcome is not your effort. It's...
Not in this... Not not not if you're putting in the effort. So it takes practice to get good at this. I... I'd also I'd also tell people, don't forget that you started with the tools and knowledge that somebody gave you.
And if they were not well taught or well considered, you're you're working with... You know, you're trying to you're trying to hammer in a a nail with a screwdriver. And then at the end, looking at the nail that's all dinged up and not in the wood and going, well, I... I'm I'm a terrible carpenter. I don't think that's the case.
So I'm... Yeah. Anyway
Yes. Yes. Okay. And what we talked about in the beginning is this... The illusion of control.
Right? Going back to what we said in the beginning that because you you can see it, sometimes we believe all the time that we should be able to control it.
Mhmm.
And we know that we can we can do our best, but we cannot completely control all things all of the time. And so we can have more data with the same uncertainty, right, of why... I'm doing this thing. Why is this not happening? And that reinforces that sense of...
But just because I can see it doesn't mean that I should have known what to do or I did my best, but I have this now data right there as opposed to, you know, if you're finger pricking, you finger prick, you wait two, three hours, and you don't have that that, like, minute to minute emotional feedback of how poorly you did in bolusing for that food. Right? So just... Again, I'm not suggesting looking less, checking less, not using it as data for... In making informed decisions, but noticing what that feedback is doing as you're seeing the number and you have more data, but you might still be experiencing that uncertainty.
Right? So you're... Might be feeling like, if I have all this information, why can't I make it better? Why can't I figure this out? And as we've talked about before, it could be a lot of different reasons of experience, time with living with it, education, knowing how to to make the tweaks if you need to, trusting the alarms.
There might be a couple different factors going on. But just going back to the basics of seeing the data, feeling like because I have it, I should know what to do. And that isn't always true.
Okay.
Moving on from that... Noticing that because we... Again, because we have this great access to data, we often go from... You use the word, you know, management. Like, you use the data to help you manage the disease better or in in tighter control.
Mhmm.
And often, we go from that management perspective to surveillance where, you know, you are... We are looking at it all of the time.
Yeah.
Because then it goes from, oh, I guess I... You know, we're still climbing after that meal. I'm gonna now correct, or maybe the the pump will correct, or I'm gonna give myself an injection or my child an injection to correct as opposed to that anticipatory, I'm I'm gonna make sure I'm gonna surveil the... All of this, and I'm gonna anticipate the problem. Does that Yeah.
Does that distinction make sense? Yeah.
Yeah. Of course. It turns into a... I I mean, you almost... You're lying to yourself about how much control you have over what's happening next to some degree.
I also made me wonder about this. I've had people on before who talk about, like, the gamification of the blood sugar Yeah. And how it leans into their... Like, what they actually enjoy and that a lot... There are people who come on and say that they really enjoy managing the blood sugar.
That if... That it it, like, hits their pleasure centers the right way. Does that make sense that it would do that for some people?
Yes. And for people who are maybe more... I don't know if the math minded is the correct word, but kind of in the engineering problem solving mathematician type brain.
We all hear what you're saying, Eric. And, yes, those people generally seem to be engineers when they say that to me. Yeah.
Or just kind of like minded in that way where it does... It doesn't feel like a a personal attack or an affront or reflection of who they are in their value, in their identity, and how they operate in the world, it is to them for some of these people that you are mentioning, maybe it is just data.
I... And I stole that idea from those people. Like, I want you to know that, like, the stories I told you about feeling terrible, they're a very real and longer part of my life than I wish they were. But also the way I feel now, I'm a 100% being honest about. Like, I do not...
How long the terrible part lasted45:10
I don't feel judged by diabetes or by numbers, and I haven't for a very long time. But it's not... I can't take credit for having figured out how to do that. I just listened to other people talking and thought, well, that's clearly not how I want to be. So I'm gonna have to just decide that this is not this is not a report card for me.
Plus, I've heard people for a long time say, you know, it's just a number. It's not a report card. But then you have that kind of feeling in your head. Well, like, well, it's not just a number because if that number stays there for twenty years, what it is is, you know, a pretty invasive eye procedure. And, like...
So you know what mean? Like... So you're like, it... It's not... It's disingenuous to say it's just a number.
Yeah. Right? And it's not wrong to say if you don't treat it like it's just a number, everyone's gonna be gone at some point. Like... So, like, there's a real...
I've never made that noise in the podcast before. You're all welcome. And... But, like, you know, like, both things are true. Mhmm.
At the same exact time. So I act like the numbers are important. And when they don't go right, I don't act like it's my fault. I can say that I've learned a lot along the times, and the times they don't go right, I guess I'm putting air quotes around that, when they don't go right, it's not as frequent. So in the beginning, when it's always not working out Mhmm.
I can see where you'd think, like, this is gonna be like this forever. And that's where the benefit of, like, of being able to step back and see it a more macro way would be valuable. There's no way to do that when you're in it in the beginning because it just feels like you're killing somebody all the time. It is literally what it feels like. I am not being heavy handed.
Okay? It just feels like you're killing your kid. And by the way, I've listened to adults who told me they stopped eating at times because they felt like they were killing themselves. And so, like, it... Because you're doing a thing, it's not going the way it wants, the outcome is what the outcome is.
You're you're understanding of what the long term effects could be from that outcome, and people just shut down. They don't know what to do, which is why the basis of this podcast is get your settings right, understand timing, understand the impacts of your food. Because I genuinely believe that most of the problems we talk about can be mitigated significantly by being well educated upfront. Mhmm. I just think that's how the world works in general, but I think it definitely works that way around diabetes.
Anyway, surveillance is... To get back to your question to your question, I do speak to people a lot who will kind of giggle through, I'm a very type a personality. And I'll say, what does that mean? And they'll say, I'm a pretty... I have a pretty controlling personality.
And it does lend itself right into this diabetes thing very quickly. Now with respect to those people's stories, they eventually will tell you the part where that started ruining the relationship with somebody, and they had to stop. So I... Again, I think hearing that up front might help somebody who's about to lean into that to say, okay. That's the thing I need to avoid.
I've heard enough stories from people that say that surveilling this thing is not the way to go. Anyway, those are my entire thoughts around surveillance. So
good. Like, the the experience of feeling like you're actively killing your kid when you're actively trying to keep them safe. Right? That experience in your body is so excruciatingly painful physically and emotionally. And that is where probably majority of all caregivers are when their children are diagnosed.
And and and then for people who are able to manage themselves in in the new stage. I know we always say it's, like, kind of, you know, in the early stages, but it can happen at any time. And what I'm also wanting to highlight is you are sharing that there is there is a boundary around that time period, like, that it it can feel like that's never going to end and that it's permanently chaotic and that you feel like you do need to surveillance or do... Be in surveillance of the blood sugar to try and, you know, stay ahead of that feeling of I'm actively killing when I'm trying to actively keep my child alive.
The season of hypervigilance has an end49:28
Listen. I'll oversimplify the whole thing. If you feel like that, go listen to the pro tip series and just understand it halfway. And six months from now, a lot of this will be alleviated for you. Not to minimize it or how difficult it is, but understanding how to use insulin takes away a lot of this.
And it also takes away wildly swinging blood sugars that make CGMs alarm all the time. Lows that you feel like are dangerous get, significantly... Listen. Go to juiceboxpodcast.com on the front menu. Right?
And there's a little survey there that you can take or there's the results of the survey. If you click on the results of the survey, you will see people report how there's... There are significant, like, frequent low blood sugars, how much fewer they have of them now after listening to the podcast than they did before. Like, you you can... There's ways to...
Like, I think sometimes we get caught in the wrong fights. You know what I mean? Mhmm. You know, like like, oh, my kid got low. They're always getting low.
This is our problem now. These are lows. And I think maybe the lows aren't the problem. Maybe how you got to the lows are the problem. And so, anyway, whenever you're falling in a hole, it's always smart to look back over your path and go, I wonder how I could have avoided this instead of how do I continually pull myself out of this hole.
And I don't know. I'm I'm sorry. Did that get preachy? I didn't mean for it to be. What's the next step, Jen?
No. Let's just take a look at number eight. Okay, Erica?
Okay. Okay. Yeah. Okay. And, yes, I think it's it's two things.
It's knowing how to when when you have the ability and time and energy, like, reconciling the two of I'm I'm just trying to keep my child alive to, okay. I'm gonna learn and teach myself how to avoid getting into the hole. What needs to happen simultaneously is that the grace towards yourself and and the insulin, as we've... I've said before. Like, we need we need both.
Mhmm.
Yeah. Sometimes we need more grace. Sometimes we need more insulin. But holding those simultaneously are are really important to navigate life with with diabetes.
I guess balance is important is what you're saying to me.
Yeah. Yeah. Yes. Okay. So this next point, I want to preemptively say this is not to pile on more blame or shame.
What your child reads in your reaction51:53
But when you're in a space to kinda step over and look at what the hypervigilance is doing for your relationship with you and your child. And this might be when they're eight years old. This might be when they're 18 years old. This might be when they're 28 years old. But just having that awareness when you feel like you are able to, noticing what does this constant monitoring communicate to them, to my child.
You might... You you are trying to keep them alive. You're trying to communicate, I love you. I'm keeping you safe. But they might perceive your actions or your words that something is wrong with them or that their that their blood sugar or their data determines whether everyone is okay around me is a big one.
Right? Like, my my glucose or my... You know, whatever numbers on the screen determines whether everyone is safe or calm around me. Again, it's gonna... I I don't want...
I'm not saying this to pile on the blame or shame as a caregiver.
Put it on me for a second, Erica.
Okay.
You and I have known each other a number of years now. Yeah. And I assume you've listened to some of the podcasts along the way. And I would tell I would tell anybody listening, you listen to this podcast from front to back, and what you will hear is somebody who has a deep respect for their daughter and thinks they're doing... And thinks she's doing a great job.
Go ask her what she thinks I think of her in diabetes because she'll say he doesn't trust me. That's it. I I... That that is the simple statement around what you were just trying to say. You are going to because I...
Everyone's going to put that person in a such situation over and over again that their only takeaway can be, well, that person is checking on me all the time because they don't think I can handle this. And maybe they can handle it or maybe they can't handle it. They're still gonna feel like you think they can't do it. And I don't know how to square that circle. I certainly don't know the answer to that because I because had I not done the things that I did, Arden would certainly be in a worse situation.
I think this one gets chalked up to... It's one of the parenting things that if you're a good parent, you're just not gonna come out on the positive side for yourself on. That's it. You just... You don't you don't get to win on this one.
You get to be the person who didn't trust them whether you did or not. And they're safe, and they'll get past that part. That's why therapists exist. They can go. That's when you hear somebody say, oh, go...
Have... Everyone has seen an older person at some point tell their child, why don't you just go tell your therapist? Like like, which which means you're welcome. I got you here. I'm sorry.
It couldn't have been a perfect ride, but, you know, go figure that out for yourself. I'm retiring. It's... I I don't I don't mean to make light of it. I don't think you're getting around it.
So, you know, good luck.
So much of so much of diabetes is... There's this exchange. Right? Of one thing for the other.
Mhmm. Now
from your perspective, I'm hearing you, you know, say that, like, she's she's safe. You know, she will hopefully not have any complications. Her lived experience is that you don't trust her in her management, And she might move through that and work through that. So that's kind of what the exchange is there. I think in...
Along the way, for not only for your relationship with your child, but also for yourself in having that awareness of creating the the emotional... Kind of the healthy boundaries around the emotional experience. If this is just an example of looking at the number and you thought you pre bolus enough or you didn't pre bolus, you forgot, you tried to correct. And you're looking at the number and verbalizing to yourself, well, you know, we we missed the mark on that one. We'll get it next time.
I know I know it's really oversimplifying and hard to do all the time.
Also, sometimes they just ignore it, and you have to call it out sometimes too. You can't just always go, oh, I guess every... It's okay. Like like, sometimes you have to be like, hey. The hell?
Like, just bolus for god's sakes. Like, it's been like that for two hours. Like, what are we doing? Like, it... There's some...
Listen. There's a mix. I'm not saying that this is the end of our story. I would also tell you that I feel... I hate saying that I feel grateful for things that I've that I've worked for, but...
Okay. I I feel grateful that as my kids are getting older, they're still around a little bit, and they're still listening to us, and they're still talking. Because I am now seeing what I think of as another part of parenting that I don't know that everybody gets to be involved in, but the part where they're adults but we're still together, and they start doing the, like, oh, okay. That did... That was for a good reason.
Like, do you know what mean? Like, I like that we're together for this part too. Because I think if you... If your kid feels that way about anything you've done, and then at 18, you're like, go to college and they go to college, then four years later, they move into their own apartment, you never really get to get together again. And you go from being, like, at the end of parenting where you're just getting into that age where they start looking at you and think maybe you don't know what you're talking about and you're on the end of senility, like, on its way.
Right? And then the next time they see you, they're adults and you're actually six years older and you are on your way to senility. Okay? And then they just think of you as an older person. Person.
Like, I love this time right now where we get to work through this stuff because trust me, I'm making inroads on helping Arden to understand that it is not that I don't trust her. Like, she was just in a situation. She was walking the devil's dog all day long. Right? Like...
And I was the one going like, hey. Make sure you stay away from it. Like, you know, like, it's... Don't pet it that close, like, that kind of stuff. And sure, you get to see it as, like, anytime your parents help you with anything, it feels like, oh, they don't trust me.
Of course, that's what it feels like. Everyone... Just take a second, think about your own life. That's what it feels like. And then you get indignant and go, I'm trying to keep you alive or, like, you know, like, that kind of thing.
That ain't good either. Keep that yourself. And, like, you know, like... So I just like that we're... I don't think...
I'm sorry. I just started that sentence three times. But, like, I take seriously the idea that a person's brain's not fully formed until their mid twenties. And I tell you that I think we have time in their early twenties if you're together with them and have a nice relationship where you can continue to mature together and be a part of that process instead of them off in the world having it by themselves and then coming back and applying it to your old later. So I'm...
I think that's going well for us here. I certainly think there'll be a day where Arden will say, like, I think my dad did what he needed to do. For the moment where I take my solace is that my daughter, when she is not paying attention to her diabetes at all, has a six five a one c. So I win. That's all I hear.
And she wins because, you know, all the reasons. And when she is when she is drilled down on it, I see that a one c goes right down to, like, a high five, a low six. And I think she knows how to do this. She knows how to do it when she's got all of her attention to give to it, and she knows how to do it when she doesn't have almost any attention to give to it. And that makes me feel really comfortable.
Mhmm. So... And if she has to hate me when it's over, I guess okay, but I don't see how that has to be. I don't think... Like, I see...
I hear people say... You must hear people say that a lot. Right? Well, I do what I do. If they hate me, they hate me.
At least they're alive. I don't want that. Like, that's not what I'm shooting for. But if that ended up being the case, I wouldn't be happy about it, but I would still think of it from a parenting perspective as passable. I wouldn't give myself an a, but I'd give myself a c.
I'd go, hey. They're alive. Nobody's doing meth. Whoo. You know what I mean?
Meth is my line, Erica.
Yeah. It is. Yeah. Yeah. Yeah.
Yeah. I just don't want them to bar? I just really don't want them to lose their teeth because I think there's no way that people aren't gonna see them without teeth and blame me. You know what I mean? So Oh my gosh.
So, yes, I think there are... Going back to the first example, are there moments as the the caregiver to an older child that you... Where it's definitely appropriate to intervene, not just be like, well, you missed the mark. Let's let's try again. But also when your child is younger and you are wanting to work on regulating your nervous system to model that too.
Like, oh, we missed the mark next time. We'll do we'll do three units instead of two. Mhmm. And so you also are saying to them, we need... We we could have made an adjustment.
You're saying to your nervous system, but I'm okay. And it's not a full experience of blame and shame every five minutes.
Yeah.
So just even verbalizing out loud, not only for for your child, but for yourself and your nervous system. Right. But, yes, there are certainly times where we just need to say... We need to correct.
Finish up strong, Erica. I'll be quiet. Okay.
Okay. So what we want to... Yes. Obviously, the whole goal isn't to check less. It is to be aware of what is happening in your nervous system.
And so as we are inviting you to think about, can I? Can you create space between looking and checking? And whether it's literal space, you know, like not looking every five minutes, but every 10. And up in... Hopefully, you do have alarms set where you can trust that you will hear them and that you don't need to surveillance the numbers every five minutes.
Then in that time period, you can ask yourself some of these questions. What am I checking for? Is there something I need to respond to? Or am I checking because I feel anxious? What am I hoping the number will tell me or give me?
Will checking change what I do right now? Can I tolerate not knowing for a little while? Right? And then we've talked about different ways before of setting a timer, distracting yourself with some... Whatever it is about work or some chores, something fun, do a dance.
I don't know. And in that five... And it sounds maybe very simple. But in that five minute period of time, you're building... Your nervous system is able to build and kind of reset trust with the alarms
Mhmm.
And increasing your tolerance of not knowing.
I would also say, ask yourself, how would I feel if my mom was doing this to me? And by the way, know I shouldn't have just directed that at moms, but I've had a couple thousand conversations. And this is not frequently something I hear guys talking about. So once in a while... And it's usually anxious guys when they talk about it.
I will be a 100% honest. But, like, say to yourself, like, if somebody was treating me this way, how would I feel? That's how they feel. I have to regulate myself. Like, go see a therapist.
You know what I mean? Like, don't... If you're having the feeling of, like, I can't just not look at this thing for five minutes, I'm gonna just tell you that's not diabetes. Okay? That's something else.
And to... You know? I don't know. Find out what your co pay is. You know what I'm saying, Erica?
Or maybe
Well, yes. And I
They're microdosing those drugs now too to take the anxiety away. Very effective.
Yeah. Yes. And... But there there is probably a time and a season and a space for when it feels like you you have to. So, again, this is in a time period where you feel like things are are stable enough and your body and your mind is trained to keep looking and checking Mhmm.
And and noticing that, you know, you have when you have the information, it is not always instruction. Sometimes it is. Right? Like, you need to treat the low. You need to correct.
But it doesn't always mean that you have to do something. Mhmm. And I think that's just an important thing to note too. Okay. So shall I keep going?
Finish up. Go, yeah, like, run run right through the tape, as they say.
Okay. So I invite you, what is it costing you as the caregiver to feel that responsibility for everything you can see? And right now, maybe the cost is worth it because you feel like you you have to do that to keep your child alive. And so giving yourself that grace even right now, if that is... If this is how you are operating, it is totally understandable.
But, also, we know that it might not be sustainable for for you and your body and and also the relationship with your child. And so if you're noticing, gosh. This... You know, the technology that's supposed to give me peace is making it harder, and I can never put my phone down because I feel like I have to have this number and knowledge. And so what we are not suggesting again is to become a less attentive caregiver or to check less or to not look at the numbers.
It's to eventually, when it... When the timing feels appropriate, to become more regulated and to notice the numbers, notice... Listen to the the alarms, pay attention to the CGM without being consumed with it or by it rather. Mhmm. And and one...
Just one last thought that regulation isn't the absence of worry. Right? Like, the goal isn't to not have anxiety. The goal isn't to not be worried. We all live with that.
It's a normal, natural response in life, but also with diabetes. Like, we wanna have a little bit of worry and a little bit of, you know, preemptive attention to it. But we wanna shift from feeling controlled by that worry and data to regulate your nervous system to feeling more empowered, like, going to that perspective. Like, this is giving me data to make shifts as opposed to this is giving me data that is either calming or aggravating my nervous system.
Yep. Excellent. You know what I love most about working with you is we are both people who look away from the camera while we're thinking. So I know we're never offending each other when we do it. But I imagine if you recorded us, what it would look like is two people actively trying not to look at each other while they're talking, but that's not the case.
It's fantastic. You, like, you look up into your mind. You look off to the side. I look down and away a lot while I'm talking. And I and I know I Yes.
When I do it with other people, I'm like, oh, they think I'm not looking at them. I'm like, Erica knows. This is awesome. So
Yes.
I love that you put this all together. Thank you. I hope I was in some way valuable in the conversation. I never am a 100% sure. But I really do appreciate this.
I think that, like like we said earlier, just very simply, I don't know that I've ever seen something that is so incredibly valuable and so potentially dangerous all mixed into one thing before. It is really fascinating. But I do think that this conversation dug dug out the reason why it is that. It is because it is not a thing you can actually ignore, and it is a thing you cannot let make you feel the way that we described here. And so the job to me is is is to, again, to reiterate, is to find a way to take that data and turn it into empowerment and not something that's judging you.
If you can do that, I think you're gonna be fine. So that's all I got for you.
That's good. Yeah. Great summary.
Rio will probably be fine. I... And, honestly, I I shouldn't have sounded sarcastic that way. Let me say something. I've been at this a long time.
I have felt every way you can imagine in the last twenty years of Arden having diabetes, and I'm fine now. You really will be okay. You just gotta stay in the game long enough to get enough experience to where you wake up one day and go, I know how this is gonna go. And then you can just trust that what you know is gonna happen is gonna happen. And then everything just kind of, like, I don't know, goes away.
You know what I mean? So free your mind and the rest will fall. That was about it.
I can't... I I wanted to follow-up with the next line, but I couldn't Yeah.
Free your mind and rest will fall. Be be color blind and something to them. I don't know. I don't think you're allowed to sing on YouTube. So...
Alright. Thank you very much. It's great to see you.
You're welcome. Thank you.
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