#1979 Five More Minutes
Five More Minutes
Julie's daughter already had an immune deficiency, a liver condition and a heart issue when type 1 arrived on a family trip overseas. A nurse later told them how close they had come.
Jump to a moment
- Type 1 arrived on top of a long list. Julie's daughter was diagnosed with an immune deficiency at ten after fourteen bouts of pneumonia before the age of four, and received regular infusions until she was four. Later came alpha-1 antitrypsin deficiency, a confusional migraine at eleven that mimicked a stroke, and a heart issue that sends her pulse past 200 within a minute of running. Autoimmune conditions cluster, and this family has seen a lot of them.
- It happened on a family trip, and the signs were there. She had just finished high school. The family's thing is travel. Julie describes a daughter who never drinks suddenly drinking constantly, and the slow realization on the way home that something was badly wrong — followed by an urgent care visit where Julie had to ask a registration desk, more than once, to just prick her finger before finishing the paperwork.
- A nurse told them how close it was. Getting to the children's floor, the head nurse asked whether anyone had told them what another five minutes would have meant. Julie is honest that she can't be certain she's remembering the exact words through the trauma of it — but the message landed, and it shapes how she talks about urgency now.
- Her daughter has very specific limits. She will wear a CGM without complaint but can barely tolerate an ordinary bug bite; she went on a pump by day four. Julie describes sitting quietly in the room for moral support without speaking or making eye contact, because that's what works. They're currently talking through whether to restart a low-dose GLP for the inflammation side of things — a conversation for their care team, not advice.
- The college piece is the part she wants changed. Julie describes resident advisors who aren't permitted to follow numbers, campuses unwilling to accept liability even when families offer to sign for it, and the patchwork of state rules governing whether EMTs can carry and give glucagon. She now spends real time helping families she has never met, including one as far away as Bahrain.
- Diabetes Pro Tip series — Episodes 1000-1025 — settings, insulin timing, and food impact.
- Bold Beginnings series — Scott and Jenny Smith for the newly diagnosed.
- Juicebox Podcast Facebook group — The private community, free to join.
- 504 plan builder — Free school-plan tool — useful background for the college accommodations discussed here.
Every word of the conversation
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Hi. I'm Julie. I'm Kate's mom. She was diagnosed at age 18, and I'm here to tell her story.
I am most excited for some reason today to, put right before the ad break in this episode, the Just Say Julie jingle from from MTV, which there... Do you remember that? She'd be like, just say Julie. We'll be right back. That whole thing.
I think I Go right ahead. I don't know. I think that might be wasted on anybody. I'll be the only one laughing. I'm sorry.
You said your daughter's name was Kate? Kate. Kate and Julie. Okay. Yep.
Are there kids, Julie?
Yep. An older... Two years older daughter, Madison.
Okay. And we didn't say Julie's age, but you told me earlier. It's okay to say here? I'm sorry. Kate's Kate's age.
Kate's 22, makes Madison 24. Is that about the other... The vibe? Okay. Alright.
Now we know the players. You're married? Yes. Okay. Four p...
Is there a dog? I guess I'll check real quick.
Cats. Cats. No dog. Okay. We travel way too much for a dog.
I don't wanna have to board a dog, but cats are easy.
It's a thing that you think won't be a big deal until you do it, and then one day you're like, let's go on vacation. What do we do with the dog? Right. Who's gonna feed this dinosaur in my house? Like like...
Dats are fabulous. Have somebody come every couple of days. Make sure they still have food and water. They're good to go.
Yeah. It's a it's a... To be considered for sure. Your youngest has type one. Yes.
Anything else with your oldest daughter? Does she have any struggles? No. No.
Kate has... She's our autoimmune girl. She has everything, and our oldest, nothing.
How about you and your husband? Do you have anything?
Well, they believe that I had hypogammaglobulinemia as an infant, and that's something that Kate... That was actually her first autoimmune disease that she was diagnosed with. She was diagnosed at 10 with that, but they believe that I had it too because I had pneumonia 14 times before I was four. But there was no there was no name for it back then. And you outgrow it when you get it that early.
Okay.
You outgrow it typically around age four, which both she and I did.
You're freaking me out. Is that a... Can you spell it?
Yeah. It's hypogammaglobulinemia. That's all one word.
Hypo. Gamma.
Gamma, g a m m a. Yep. Globulinemia.
Wait. Let's see how close I can do that. Do wanna spell it?
Hypogammaglobulinemia of MMC.
Chad GPD was nice enough to say, I think you're thinking of Okay. Oh, it's gonna help me say it.
It is a real thing.
An immune deficiency, diagnosed at ten5:19
It can be primary genetic or secondary to things like certain medications, blood cancers, kidney protein, losing conditions, or other illnesses. Diagnosed usually involves checking IgG, IgA, and IgM levels, sometimes followed by testing how well the person makes antibodies after vaccination. Wait.
So she was very low in IgG, and it started... About about two weeks old was her first illness. And it was just various things. It was UTIs and ear infections and hand, foot, and mouth and rhosiola and just all these things. And she was constantly having...
She she never had a high fever with any of them, just a really low grade fever. And she just was the happiest kid, always was the happiest kid. So when I would go to the doctor, well, she looks happy. And and she did, but something was going on. And the last time we went in...
And I can't remember all that she had going on, but it was at 10 old, and the doctor was just like, I can... Like, she had roseola again, and she she had the hand, foot, and mouth at that time, and maybe double ear infections. I can't remember exactly what. And we were so careful about keeping her... She was born in December.
We're so careful about keeping her away from others in the winter and all this because she's just constantly sick. Yeah. And, anyway, he sent us to an immunologist who did testing, and it came back that she was low in IgG. So for... This was ten months.
Until the age of four, she got IgG infusions, the one people donate to plasma for them, for... She did it every four weeks until she was four. And that is what, I mean, kept her alive, I'm sure. It was miserable. It was an all day infusion that we would go for.
And...
Yeah. So... And you had...
That was the start
of it. They think you had it as a baby too?
They do because they say... And this kind of plays into her next autoimmune disease too, but they, they say that it typically... The reason why that... My doctor said the reason why he didn't, like... They didn't realize it until 10 was that it usually only comes out in the form of upper respiratory infections.
I don't know about only, but typically, like, lots of upper respiratory infections. And Kate, to this day, still has not had one.
Can I read you this?
Never had.
Let me read you this little bit here. It says Okay. Hype... Oh my god. Hypogammaglobulinemia.
Here's what I'm gonna do. Ready?
Gamma globulinemia. Yep.
Okay. Is primarily an immune deficiency problem, not an autoimmune disease?
Yes. I have read that more recently.
Okay. So...
So maybe... Yeah. So maybe that isn't autoimmune. Maybe it's just immune. I'm not really sure.
I asked it. I asked my overlord before it comes and takes us. I I saw some warnings today from some AI people that were 100% gonna die. But, you know, until then, let's learn. I said, what disorders can follow this later in life?
And it said recurrent sinus and lung infections Right. Bronchiatitis, permanent wide anything. Damage the airways. That... That's a no.
Autoimmune diseases, particularly autoimmune low plate... Platelets, autoimmune hemolytic anemia, thyroiditis, rheumatoid arthritis, pernicious anemia, some other autoimmune conditions also occur more often, GI problems, inflammatory granuloma disease, jeez, lymphatic interstitial lung disease, enlarged lymph nodes, and an enlarged...
Well, thank you for this whole list. This is great.
Yeah. Sure, Joy. Just... Later the story will be like, lady makes podcast, throws herself off roof. Should I read where it says certain cancers?
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I have a little bit. Yeah. But you know what? We have so much She has so much going on.
Julie's like, listen.
That they told us she... And they won't ever say, like, oh, I'm fully in remission. But, basically, if you get it before the age of four
Yeah.
You usually outgrow it by age of four or five. If you get
it after age five, you have
it for life, and it's called something different. It's not... Because this is hypogammaglobulinemia of infancy. Right. And so then my mom, of course, at the time is like, well, you had pneumonia 14 times before you were four.
Fourteen bouts of pneumonia11:41
The doctors, like, always let us in the back door, and they would just call in prescriptions as soon as I started the little, you know, weird noise or whatever. And...
How old were you back then? When were you born?
I was born in '76.
You're lucky they didn't throw you in a river. You know what I mean? Yeah. I don't know. Crazy.
Crazy.
But back then, they just, Just quit.
Yeah. They were like... You know what? I'll quit. We'll get another one.
Right. What in the world?
Wow.
So then so then at the end of that... And and we got the antibodies or she got the... Yeah. She got the antibodies. Every time, it was from over sixty thousand people every four weeks.
And, so at the end of that, when she finally got to the point of, hey. She was going longer than a month without needing antibiotics for something or whatever, not getting sick for once, not getting a cold or whatever, our doctor was ready to, kinda dismiss us from that, but he said autoimmune because they thought... Back then, at least, said autoimmune. But he said autoimmune diseases or disorders or whatever usually, like, go together. So he tested her for a whole gamut of other autoimmune disorders, and she came back positive for alpha one antitrypsin deficiency.
And so alpha one affects the lung and... The lungs and the liver. Basically, it makes getting lung disease or liver disease way easier than the average person. So then, of course, this is another hereditary thing. So then they wanted us to...
We all got tested. And my husband and I, one of us is the carrier for the lung, and one of us is the carrier... Is a carrier for the liver. And poor Kate got both, not just as a carrier, but she has both. So...
And that was really hard to figure out back then. So she was four or five at the time, and there wasn't a lot known. We're in Michigan. We actually drove, to Chicago to speak to a specialist. And so this is what kinda ties into the upper respiratory infection.
The the doctor that we spoke with said, I really don't think she's ever gonna have issues with this. He said liver, usually, they're born jaundice and have a lot of those issues, and then later in life have liver disease. Or... And and he said, and with lung disease, your daughter should have had all of these different lung diseases with the hypogammaglobulinemia. He said, I bet she's one of these people that could smoke a pack a day and never develop lung disease.
And he said, so I really don't think you're gonna need to worry about this, but just have your doctor... Like, I didn't need to see a specialist for that.
Mhmm.
So she she gets ultrasounds on her liver every now and again, and we do tumor marker, blood blood work, and she just... She's never to this day had anything with upper respiratory. So That's crazy. So we're so we're not really worried about that one.
Yeah. Which... Does she have other issues beyond the type one today?
Yeah. She has other stuff going on too. Yeah. And the other interesting thing is this... That she gets big things.
She gets the big, you know, the big autoimmune diseases and whatever, but she doesn't get the little things. Like, everybody can have a terrible cold, and she might have it for twelve hours. Or everybody can have a terrible stomach bug, and she'll never get it. Or she'll get it... She'll throw up once or something.
Mhmm.
So I I don't know if that ties back to all the antibodies she got as a kid or if that... I don't know. It's interesting. Yeah.
It was all very... It's just hard to track. Okay.
Right.
How old was she when she got type one? 18. Eight... Oh, this is just four years ago.
Right. Right. Perfect.
So she's got other medical issues.
She's got more in between there. Yeah.
Throughout her life. Do you wanna......
She was... Yeah. At 11, she was hospitalized for what we eventually got diagnosed with a confusional migraine, but hers mimicked a stroke. And so she went by ambulance, and it was crazy. But they they ended up saying it was confusional migraines, which I know that that's not necessarily autoimmune, but there is there is some thought out there that could be an autoimmune issue.
A migraine that looked like a stroke15:55
Mhmm. Anyways, and she had another one at age 12, and then fast forward to 18, we're, yeah. That's... That was the type one. Jeez.
And for and for us, we're on... And that actually came not just type one, but also Hashimoto's. And whatever attacked her beta cells, they believe also attacked her heart. She can't... Like, when she goes to exercise, if she goes to run, within a minute, her heart rate's over 200, and she's, like, in great shape and all of this stuff.
And we have been... I thought that the accelerated heart rate like that was something to do with type type one because it came on at the exact same time. But, finally, we just now, this past spring, got a doctor who... He believes that it whatever attacked her beta cells also attacked her heart, and that's why they came on at the same time. And she's on a low dose beta blocker, which is helping somewhat so that she can exercise a little bit without being so completely uncomfortable.
But...
Oh, god. Well
Yeah. First of
I don't often find myself going, I'm sorry, but I'm so sorry. Yeah. Yeah. That's a lot to say. Is a lot.
Yeah. How does she manage the psychological side of all this?
Oh, she just likes to pretend she doesn't have it. Unfortunately, then there is... It's a lot of just, you know, I'm okay and do what I have to do, and I'm not gonna think about diabetes, and I don't wanna talk about diabetes. Because that's the biggest one. Like, Hashimoto's, they just told her...
Like, told us that she had it with the blood work, but she actually doesn't have any symptoms. We're just constantly doing blood work to monitor that and watch for symptoms, but she doesn't have to take
any medicine for that yet.
And so that... Really, the only one, that she's having to do any, thinking about, of course, is type one diabetes.
Yeah. But, I mean, the the toll of knowing that something happened to your heart is that's gotta be...
Right? Except for that, you know, we've been through all the testing. We've done all the stuff. There's no physical damage to the heart. There's nothing they can find wrong with it.
Just the racing when she
Just the race. It's it's always elevated. Like, we go on a walk, and mine will be, you know, way lower, which she's in way better shape than I am. And hers will be... Hers will hers will still be higher than it should be for sure.
But what... When it bothers her is when she she enjoys running, and she just basically can't. And she she will a little bit now because she just got on this beta blocker, and she's pretty excited when it might just barely touch 200, you know, when she runs a mile or something. And it it does it immediately, though, still. So I don't know what they'll
And a bulk of this happened as she was finishing high school?
Right. So we had just finished... She had just finished high school, and, our family's big thing is travel. Our goal was to go to all 50 states with the the four of us before both girls were in college. And it...
The trip, and a daughter who wouldn't drink19:00
So it lined up perfectly that we were gonna go to Alaska after Kate graduated college... I mean, high school, and that would be our fiftieth state together. And it was perfect because she had always wanted to been... Always had had always wanted to go. That's her...
Like, she's just the outdoorsy
Yeah.
Mountain, all that stuff, science geek person. So she was super excited to go. And so this is... So we went, and that's when she was actually diagnosed while we were on vacation in Alaska.
In Alaska?
In Alaska. Who... I mean, and they... It was crazy because it was it was after COVID, but yet they were, like, still in cove... They were behind us in how we were handling things.
And I'll start at beginning, though. She... So we're on the plane, and my girl, we always said she had the bladder of a steel trap. Like, she never used the bathroom ever since she was tiny. So she's getting up on the plane going constantly.
Mhmm.
And I'm like, what is going on with that? That's so weird. And then she is any hike we're on, her heart rate, of course, who knows if this is... It it could have been at the same time DKA, but her heart rate is crazy high. And my girl who never drinks, like, we're always like, you need you need to be drinking or you're gonna be dehydrated.
Like, it's just... She's never thirsty. It's never... She's downing my water bottle. She's downing her water.
You know? Like, she just... Every single hike. And and she's she's ornery. She's irritable.
She's never like that. And... But, you know, you have excuses for everything. Like, you just have excuses. I...
I'm thinking, like, well, she's going off to college in a few months. Of course, she's, of course, she's stressed and anxious. Like, that's, you know, that's what that is. And her senior year, before this, she had played sports all three seasons, but her senior year, she decided to not play any sports, focus on her art. So then she would say...
She's like, well, I haven't been playing... You know, I haven't been exercising like I used to. I mean, granted, she's a hundred and twenty pounds. You know? Like, it's it doesn't make sense.
It all feels excusable, though.
So... Right. So we just keep excusing all of this. And, finally, one day, we
wake in the... Let's see. Was it in the morning?
No. I think we had been out doing something that morning, hiking. Who knows what? And we came back to the hotel for a little while before we were gonna go out to dinner, and and I had talked to her. Like, I'm googling.
Right? I'm googling everything. Well, it's coming up. It's coming up diabetes. And I'm like, well, that's stupid.
My girl doesn't have diabetes. Look at her. Like, that's... She's not overweight. She's not old.
She's... You know, that... That's not it. So I... But but I'm not getting any other answers.
Right? Like, everything's coming back to that. And and so, anyway, she starts slurring her words. And and we had talked to her before. Like, Kate, you're obviously not feeling great.
Like, let's go to urgent care. No. I'm not ruining our vacation. Which her just being like that, like, snappy is not her personality.
Mhmm.
So that was weird. Like, everything was just weird about it. And finally, my husband and I were like, okay. We're we're taking her. Whether she wants to go or not, we're taking her.
And to me, I'm like, it's something to do with blood sugar, but, you know, it's gonna be an easy fix. But... So I'm like, Kate, we're going. We're going. You obviously don't feel well.
We're gonna go to urgent care. We're gonna get this fixed. We'll get on with our vacation. And so we made her even though she... And and she she...
Of course, we couldn't have made her. She's 18, but she she gave in. She's like, okay. Fine. Whatever.
But she's mad about it.
Julie, you're lovely. I I know she's 18, but, like, I... You know, you're like, did you wanna go to college? I was gonna help pay for that. So why don't we just go to urgent care?
Get get the zip ties. Okay? Yeah.
Well, if I would have realized how emergent it was, yes, it would have happened. I would... But I was...
You know, I'm not I'm not... I have no idea. Yeah. Also, can I just can I just tell people twenty minutes in how you told me you were introverted before this started?
I totally am,
though. Well, you are.
Phone right now. Like, this is easy. Oh my gosh. Yes.
You are shot out of a cannon doing such a good job of telling your story. I don't think you need me here. Like, five times a year, I get down to somebody that I think I didn't need to be here for that. And Gosh. So Oh my word.
I I am interested in... I just wanna... Right before we get you to the urgent care, which I can't I can't wait to hear about that.
Yeah. That's the story too.
Northern exposure style urgent care you were probably at with a moose wandering through it. But Right. When you have a kid, 18, who's having a medical issue, who also had headaches when they were 11 and 12 that mimicked a stroke. Have you been waiting for the other shoe to drop for six years? You have For sure.
Right? Okay.
Yeah. Okay. It's always been one thing after another, and we'd had a little space in there of nothing terrible. So, yeah, I think you're just kind of always waiting.
Can I share? I hate that so badly, that part of all this where things have been good for a while and then suddenly something reemerges or its head pops up and you go, oh, that's right. Our family has this going on.
Right.
Do you know what I mean? Right. Yeah. Like, it feels... I I I hate that.
I hate... I I hate when it feels normal for long stretches, and then suddenly it isn't. It's Right. It's a whole... You have to learn how to not get knocked over by that every time it comes up.
Anyway, that's... Obviously, I'm not gonna tell more of a story here because you're in the middle of something, and I don't need to hear a review about how I made this about me. So why don't you tell me when you get to urgent care
Okay. What happens next? So we get to urgent care, and I go up to the girl at the registry, and we start giving her info. And I said, you know, something's something's going something's going on here. I...
“Please just prick her finger”25:00
And I'd... So in my head, I'm thinking, oh, it's high blood sugar probably because of what I'm reading, but then they'll just fix it and we'll... And we'll move on. So I said I would just... I would really like to get her finger pricked and whatever.
So I'm giving her info. When I get to her age, she's like, oh, she's 18? And I said, yeah. And she said, well, then I need to be talking to her. And she's staying behind me this whole time, which she's she's way more outgoing than me, but she's mad.
She doesn't wanna be there. She doesn't wanna do anything. So the girl looks at her and says, how do you how do you feel? Kate says. I feel fine.
I'm fine. I don't need to be doing this. And I was like, oh my gosh. And so then the girl just stops registering us.
I'd be like, lady, listen. She doesn't do her own laundry. Okay? I pay for everything. Right.
Yeah. Exactly. Like...
Yes. Luckily, a nurse hears me from the back just saying, just please please prick her finger. I... Something is going on. I...
Would you please just prick her finger? That's what we're here for, and and she's she's not herself. This is not like her. And and this... So this nurse comes out and said, skip skip that.
Come in this room. So she and I... My husband's waiting in the waiting room. Our other daughter's in the car because, of course, we're on vacation, so we're all together everywhere. So we...
She and I go into this room, and I basically have to hold her down to get her finger pricked. I mean, it is so unlike her. If you knew her and the joyful, happy girl she always is and just whatever, it was crazy. So she... It it pops up 04:38, and she tells me it's 04:38.
And I was like, okay. Like, what does that mean? And she's like, oh, that's very high. Okay. So what does that mean?
And she said, it means that you don't even need to finish registering here. We're calling an ambulance, and she's going to the ER. And I was like, oh, okay. Okay?
For me
for what?
You don't need to
call an ambulance. We're... Our car is here. Our rental car is here. We will we will go.
She said, you cannot stop anywhere. You go straight to the ER. So that was our Yeah. That was our experience there.
Did she keep fighting with, like like...
No. I mean, after the... After she got it poked and whatever, she wasn't, like, fighting. I mean, she's mad, and she... Even going out to the
car, I don't wanna ruin her vacation.
I don't wanna go to the hospital. You know? This kinda... I mean, just hours
of life. Yeah. Not being reasonable.
No. In slurring words, you know, and just, I mean, just scary stuff. Wow. So... And my husband wasn't in there.
So we get in the car, we're driving. And my other daughter says, hey. I have to use the bathroom. And he says, oh, there's McDonald's right here. We could stop at on our way.
And I'm like, uh-uh. And I'm trying to not be, like, scare anybody in the car or... And Kate, I don't know how much she's even understood. So I'm like, oh, no. She said we're not allowed to stop.
She'll have to use bathroom Yeah.
At the hospital. We... US... USOBs weren't in there with me just now. This is not a thing.
Like, we're
This is not.
Yeah. Like, lot of even
have us... Right.
We're Put the windows up. Turn on the child locks, and get to the hospital before Right. Exactly. Dives out the window of the Avis rental. Okay?
Right. Yeah. Yeah.
Yeah. I got it.
My compliant girl who's so happy and how easy... Always always been my easy, you know, easygoing kid. Yeah. Crazy.
Oh, wow. That's really
sad.... Get to the ER, and I say we're here because of a high blood sugar. And the guy... Somebody comes out, pricks her finger. He says, is she type one or type two diabetic?
And I said, is that what that means? And he got this look on his face like, oh, crap. I probably shouldn't have said that. And he, like, turned and walked away, and that was my first, like, indication that Let me read she could have diabetes.
We're about to find out if she's type one or type two. Right. Sorry. Sorry. I used the wrong lead into that sentence.
I think it's it's such a common story for people who who walk into an ER usually and go like, hey. We're here because they have diabetes. And then there's that confusion because they don't realize what you're saying is I just figured out they have diabetes. So you're in a slightly different situation, obviously. Wow.
Right. Wow. Wow. Wow. Oh my gosh.
So, she did ruin the vacation. She was right about
a redo. She gets a redo. We'll talk about that later. We could
go forever college. But she was right about that, though. She was like, yeah. This is definitely gonna ruin our vacation.
But still, I don't know what's going on. I'm still assuming we're gonna bring this down. Okay.
So she has Really? Okay.
Oh, I have no idea. I don't have anyone in my family with Like,
I don't know what that means.
So I'm still thinking we're gonna get this down. We're gonna be out of here in a couple hours.
Like... You know, that kind of diabetes that kind of diabetes you just take care of in a couple hours.
But isn't it terrible that, like, so little has known about this terrible disease that nobody... Like, you know, I
mean Julia...
I'm an intelligent person.
Used to say I used to say all the time that if we made a list of all the things that none of us know about... Because I see people get upset online. They're like, well, we need to... You know, people need to understand this better. Like, people do not understand anything that is not affecting them.
And and to ask somebody to understand the entirety of the world would take their whole life and isn't reasonable. So you learn about things as you need to and, you know, here's the thing you need to learn about. So Right. It's just... I I am...
I really am desirous of knowing if the health system was up to par. Did you get good help? Like, what happened?
Well, like I said, it was, you know, two years after COVID, and they were behind. So they put her into... They took her back to the children's wing so that I could come with. My husband could not because it was only one person at a time still. And so we went to...
So... And I'm trying to... Like, I don't know what I'm doing. I'm trying to learn all this and write and texting my husband who's in the waiting room and trying to figure all this out. But, yes, they were they were really fabulous there.
They had... They were just really good good people, and they would... So we're in Anchorage, and they would... Like, even at one point, and I... While we're...
It was kind of at the beginning of it, the... An ICU doctor came in, and he's like, I just keep hearing about this girl with these levels of... Her pH levels and all this, and I... And I'm hearing that she's awake talking, and she shouldn't be, and I have to see this for myself. And, just really kind people.
Awake when she shouldn't have been31:23
And they and they broke it to me easily because I was like, you know, how long do you think we're gonna be here? And they're like, oh, well, with a with a diabetes diagnosis, this this will... This is often a few days. And I was like, what? We're on vacation.
We can't do this.
We have a...
Like, I've been so clueless.
We're riding a moose tomorrow. What are you talking about?
Just get this blood sugar down. We're gonna get out of here. You know?
I've I've only been bitten by a thousand mosquitoes so far. I need to get back outside.
Oh my gosh. So they they said, you know, she she presents as type one. We're assuming type one, but her age could be type two, but we're just... We're gonna run the test. But until then, we're gonna
Yeah.
We're gonna assume type one. And I remember there was a period of time that they couldn't give insulin until they got... Brain swelling was thrown around. All these things were thrown around, and I was just in total shock.
I was gonna say, like, how crappy is it for a doctor to basically walk in a room and go, oh my god. Is this kid alive? That's insane. Let me look. Let me look.
Right. Yeah. Yeah. And and
I just
wanna talk to her. In front of you. She's
not talking normal. She's... Her her grammar's off. She's saying weird things, but they think it's... They they don't know her.
They don't know how she normally speaks. And so they're like, she seems good to me. Is this normal? I'm like, no. That's not normal.
Like, she's... She can't even finish what she's saying.
When they get her levels straight
Yeah.
Does she have recollection of all that?
No. Not a lot.
No. Okay.
Nope. Well... Nope. And we thought we were gonna lose her at one point. They had to do a central line and...
But with ultrasound to get that in. That, she remembers like it was yesterday. She has... My poor girl who's had blood work every four months her entire life now has this extreme needle phobia
From that one moment.
Yep. From that one moment.
What do mean?
I don't even remember them using. I don't think they ended up using it.
I I have to ask you. What do you mean that you thought they were gonna lose her? Where...
They they were, some... With the brain... With brain swelling and pH levels, I can't even remember all the stuff now, but they were just talking about how they had to get that down before they could get the... Before they could start her on insulin. I don't know.
I'm sure I blocked a lot of it too. I was in this trauma.
Like, I
don't know what's going on. At one point, though... And we... It wasn't right away. It was hours after we had been there.
They came in, and her IV was working fine, but they said they needed to put this one, the central line in. Mhmm. And so, yeah, that was still affects her to this day. So she remembers that like it was yesterday.
You just made me wonder what happened to a soldier in, let's just say, I don't know, the civil war who had to have their leg knocked off with an axe after they were, like, hit with a cannonball. Like, I wonder what level of medical trauma they had going through. Yeah. Yeah. Yeah.
You know?
This is just my kid. I'm not even experiencing it myself, but I can't. And then her... In her... Yeah.
Her experience fresh for you still. Right. Yeah. For sure. Yeah.
No. No. I can I can see? And so she's... She developed pretty quickly, like, a needle phobia.
Did... Is it a thing she had prior to that?
Never. I mean, she'd gotten... Because of all of her other things that she... We kept track of, she was she was getting, through different specialists and whatever that she was going to for different autoimmune, whatever, she had... We got blood work every four months.
So she was... I remember her as a two year old going in for these IV infusions. She just sticking her little fist up there, like they always did it in her hand. She'd get that IV put in her hand. Like, it was nothing.
And now all of a sudden, my kid has this crazy xenophobia
that she's never had before. Maybe her brain just had enough. You know?
Yeah. I don't know. Yeah. She still has to fight it to this day. Like, to go for blood work, she has to...
It's it's... She powers through. But...
Yeah. I wanted to ask where does it affect her? Does it... Does she wear a pump? Yes.
CGM? Yes. Do those bother her to put on?
They did, but she learned to do it.
Okay. And so going to get a blood draw still bothers her. How about insulin needle or a pen or anything like that?
Yeah. We don't... We never have to do that. We have it all in case we ever have to, and she would...
You've never tried, though? You ever pull one out and just walk towards her to see what happens? Not the test.
That's not
how you're supposed to test that. I'm sorry.
No. No. She would... We always talk about, like, if if we... If she had to, like, first, would...
She would want me to do it. And, obviously, if I wasn't with her, she would she would figure it out. She would have to. She carries a pen as backup. Like, we...
She carries a pen. Like, if she has to, she would she would figure it out. Yeah.
Oh, you hope. Yeah. What's the, what's a what's a needle phobia look like? Like, what is that... Like like, functionally when you go
to the... Like like, when she goes to get blood work, like, will... I mean, she has to, like, make herself get in there and sit in that chair. And she wants me nearby, but at the same time, sometimes I'm too much, You know?
The central line36:24
Heart racing? Is she defensive?
Is she... Defensive? Like, she'll pull her arm away. She doesn't want anybody, like, talking, joking, anything. Like, just let me...
And she always has to have so many tubes that feels like. You know? And and then afterwards, she feels like she can feel it in her arm for a long time. I don't know. Very...
Physical pain or feeling that she described?
Yeah. Physical in her arm. Like, a feeling in her arm afterwards. Like, just that. I don't...
Arden describes Arden describes that it can feel like a lightning shooting through her.
Okay.
But we had this really interesting thing the other day. She was using an injector pen. So she was injecting a GLP. Right? Uh-huh.
So those self injector pens. And I was sitting next door just kinda like... I I I realized you must know exactly what I'm talking about. Like, you're sitting very quietly being there for moral support, but not saying anything or making eye contact. Right?
Yeah.
Trying to pretend you're not there.
Yeah. But but you're not allowed to leave, and you're also not allowed to help or talk... Yeah. Okay.
Or say one word.
Right. Yeah. It's a very interesting affliction to to be with. Arden is moving through it, and she's she's getting there. But...
So, anyway, this... I thought really interesting thing. Like, she... If she can get distracted by something else physically, it can help. And she has this...
She's going to put the GLP in her thigh and kind of on the side of her thigh on her right leg. Right? And I look and I go, you know, I can see that it's not happening. She's, like, you know, positioning and repositioning the the injector pen, like, a thousand... As if there's, like, a better place.
Do know what I mean? Right. Yeah. Is this the thing you've gone through with with yours?
Okay. Just in
the hospital, though. But...
Yeah. Okay.
So so so you're watching. It's like a squeeze. No. That's not the right place. That's not the right...
Over and over again.
It's right here.
Then all of a sudden, there's a pause. I can't do this. I'm like, you can do it. I can't. Turn up.
Don't talk to me. Blah blah. And then I noticed on the inside of her knee, there's, like, a little bug bite, like a mosquito bite or a spider bite or, like, she has a little raised, like, red thing. I said, oh, look. You have a little bug bite.
And I just scratched it a little bit. And she goes, keep scratching it. And I was like, okay. She was like, scratch it harder. And I was like, okay.
She goes, do not stop scratching it. I'm like, alright. So now I'm scratching this bug bite, and she injects the GLP. Mhmm. And it ends and she goes, that's the least painful one I've ever had.
Oh, wow.
And I thought I... It's such a interesting, like, mental physical connection. Do you know what I mean? It really is.
Yes. It really is. And I don't even know if it's the pain for her.
I I don't know. Yes. It's...
Right. It's all... Like, before before Alaska, going get blood work, we do it all the time. No problem. Put my arm up there.
Do it. Done. And now it's this... You know, I have to talk herself into it. Big thing.
And we've always done... Because she's done this her whole life. We've always done, like, a Starbucks or something afterwards. So we talk about that. You're gonna get your...
You know, we'll go wherever you wanna go and get, and we still do that to this day. Like, you gotta be treated for having to have
crappy things torn in your life. Well, you know, it's interesting because people will wonder. But Garden wears Omnipod. She wears Dexcom. Right?
Same.
Yep. Yeah. She just had any trouble putting that stuff on.
So she... Omnipod? No problem. Because you put it on from your... You click it from your phone.
Mhmm. Dexcom was so difficult because you have to physically push the button on the injector thing or whatever it's called, the applicator. Well... That was so hard for her.
Yeah. I don't... Listen. I don't say Arden loves it. She's not excited about it.
I'm sure no one who's putting on any device is excited about putting
it on.
That's not my point. But she doesn't pause. Like, she, you know, she puts her pod on. Arden, we pinch up for a pod insert, like, little pinch up, push the button.
Uh-huh.
Goes in to... Like that, and it's over. Right? Like, you don't really talk it. Sometimes you rub it out or that one really got me or something like that.
Right. No. Like, it feels like lightning. Like, nothing like that.
Right. No. Nothing like that. She does it all the time.
So I have a misstep. I don't know how long ago this was now into this whole, like, journey with the the needle phobia thing. Because Arden, like you, was... Or like your daughter, was really fine for a long time. And then one day, it just got sideways.
Yeah. And it was during the blood draw. I've described before, if she was Spider Man, she would have been on the ceiling because she backed up up onto a table and kept backing up. And if she could have stuck to the wall, she would have been gone. And and I had to take her out of the room into a bathroom, calm her down, get her ready to get this blood draw done.
I don't remember how old she was. I don't think she was a teen yet. I think she was younger. Okay. And then you didn't really notice it here and again until all of a sudden it was just like, I can't...
What she'll tolerate, and what she won't41:10
Like, one day she needed to... I I... We were in a situation. This is years ago. And I was like, hey.
Your blood sugar's not moving. I I don't know if it's the site or not. Can we just inject with a syringe to see if that works? But we hadn't given her insulin by syringe in so long. She just sort of must have forgot about them.
Because she's like, yeah. Whatever. And then I pull it out, and she goes, what's that? And I was like... And she was young, and I was like, it's the needle.
And she's like, woah. No. No. No. No.
And I was like, okay.
Doing that. We're not doing that.
So before she went to college, I said, Arden, listen. You're gonna have to practice giving yourself insulin with a needle a couple of times because you... If that comes up and you're out of state, like, you need to be able to do this. She did it one time. She disappeared in the bathroom for two hours Mhmm.
And came back out. And she's like, I did it. I was like, you did it. I thought you were dead. Like, I thought you were in there for so long.
I thought you fell in the toilet. So my grandmother would have said, did you fall in? Like, you know, like... So... And even then, I didn't realize, like, the weight of it.
But anyway, so into this process, like, just a year or two ago, I don't know what possessed me. But I said to her one time, I'm always so surprised that putting on the CGM doesn't bother you. And she goes, why? And I was like, because you can see the needle. And she goes, what?
Oh, shoot. Should I take those words back? And I was like, nothing. What? What the...
And I could even hear the voice of my own head going, yo, man. What are you doing? Yeah. Yeah. Right?
And then... But then I was like, alright. Cat's out of the bag. And I thought, well, maybe she'll realize what's going on and then see how the other thing should, like... You know?
Because the g seven, after it deploys, like, you can flip it over and you can see. You know?
Like Right.
A needle comes like, wazoom. It comes out. It hits you and leaves behind the wire and it's...... Puncture? Yeah.
And she and she looked at it, and I'm like, now my heart's in my throat because I'm like, oh my god. If we can't get the CGM on, I'm gonna I'm gonna throw myself out of a window. I'm like,
Right. I'm That's not your fault.
I'm gonna walk into my wife and go, hey. Sorry I asked you out all those years ago. I give up. I'm leaving. And, like, you know, like...
But instead, she she looked at you and goes, no. That doesn't bother me. And I was like, wait. What the hell? So no no problem at all with the CGM.
So no prob... Yeah. No problem with Kate either except for the CGM was an issue, but at the beginning, she needed... She would put it on, get it all ready. Again, we're not talking.
We're not looking. We're not whatever. And then she would be like, can you push the button? And we would push the button. And this is how it went.
And she would... But first, it would be... I mean, it would be thirty minutes of sitting there trying trying to push the button trying to push the button. Couldn't do it.
Ironically, other than this this, like, a need... Like, a physical needle that she has to control, Arden's... Even when she goes for a blood draw, she hates it. She sits down, puts her arm out, and sits there. Right.
Like... And... But... Yeah. Isn't it crazy?
I don't know. Is crazy. She tried... We tried some things to help her with it. We haven't really found anything completely valuable yet.
I would say... I'm not ready to say what I think might be working now, but but things have been better. And so I'm I'm very hopeful. We actually just had a talk before you and I started recording because I very much want her to go back to microdosing her GLP to keep coverage for the inflammation piece of the whole thing to... Like, I would I would like her to inject half of it about every four...
I'm not a doctor. This is not advice. Nothing here 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.
What I would like her to do is to inject half of it about every four or five days.
And I listened to one of the podcasts or something where you were talking about, like, possibly having those mixed in. Like, that would be such a dream come true
for us. Yeah. Yeah. Yeah.
Because because injecting herself with something like that, I I don't even know.
Yeah. Something... I I don't know if that's even feasible. Actually, I just brought that up with somebody today who was like, you should talk to my friend. He's a researcher.
He might look into that. I was like, oh, okay.
That would be... I mean, that would be amazing.
Yeah. So...
And... Think for a lot of people. Right? Like, for a ton of
type ones. I think more people struggle with this than you think. That's my expectation is that I think more people struggle with this than you think. Can you...
Which is crazy. Right? The people who deal with the needles the most out of... In life are the ones who are...
Yeah. And the and the doctors definitely don't think that because they always say the same thing. They're always like, oh, well, you're used to this. And and I'm like, that's not a thing.
No. It's it's like the opposite. Like, she did way better before this. And... Yeah.
Hey. Julie, give me one second. I'm gonna step away just for a second. I'll be right back. You...
I'll be literally back in ten seconds. Okay. My apologies. I'm in the... No worries.
I'm in the middle of moving my whole operation to somewhere else. And today, I'm in a room that... I don't even know if I wanna say this. I... I'm I'm in a room that has a small cage with, like, these little tiny lizards in them.
And and one of them didn't eat one of the crickets. And now the cricket is... It's out? It... No.
It lives in the cage now, but it's been in there for so long that it's got the wings, and the wings make the noise. So... Yuck. Yeah. So so, basically, what I just did was I just basically went over to the cage and just, like, misted it really heavy because that should keep it quiet for a little while.
But if you guys could just find the cricket needed, that'd be awesome. I... There's, like, five little velociraptors in this thing. You should see them when you... Actually, first of all, there's six of them.
I don't know why I lied. You said five. But they're the tiniest little things. But I swear to you, they are like a six inch version of a raptor from Jurassic Park. Oh, wow.
Anything they say... That they see move besides each other is dead except for this one cricket, which is living in there like... I don't know. He's he's he's in there running from him like OJ. You know what I mean?
It's like, he's just... He's... I don't know. He's just making distance. Do you think people even remember OJ?
I mean, if they're our age, they do. Right? Don't you have to?
I have to tell you. May I take a left turn for half a second? Okay. The people listening expect this to happen once. They'll be disappointed if we just hear your whole story.
Okay. And so... But I'm gonna fast forward in a second when I get back to you. I I I... I'm learning that one of the things from...
You you learn a lot as you... As you're older. Right? And as you've lived a longer and longer time. How old are you?
Mhmm. 50.
Okay. The first thing that I noticed was that, you know, the the the saying, those who don't learn from history are doomed to repeat it. Uh-huh. That saying should be, we don't learn from history. That's why we repeat it.
Because no no one really. What does that mean? Like, you... You're born and at some point, you're conscious and you see the world around you, and then this is your expectation that this is the world. And then the world shifts.
Right? Like, you you can see it happen in all different ways. Like, norms, you know, go from one side to another. I don't know if people know this, but, like, you know, the... How you would think...
What's a good example? Like, how you would think of the Republican or Democratic party right now in in in The United States. At some point in in my lifetime's history, those things were swapped. Like like, they... Basically, the things that one side found the most important shifted.
It, like, slowly went to the other side. My point is that things go back and forth, back and forth. So if you were born at one point, you would think, oh, Republicans, they mean this. And then... But if you were born twenty years later, you go, Republicans, they mean that.
Then you'll hear somebody go back when I was a kid. That that used to mean being a repub... Like, you know what mean? Like, there's... That that happened.
It happens with everything, though, and you don't realize it. And so, you know, even with, like, social stuff where people like, you know, we gotta fight against this. I'm like, yeah. I... Somebody already fought against that.
And before them, somebody else did it and some... But you're not aware of it because you didn't live through it. Right. I don't know what my point is other than to say that things really do, like, change and morph. And and as you get older, you can see it, and then it gets really frustrating that other people haven't lived through it long enough to see it.
And then when you talk about it, you sound like an old person. Right. You you sound like a guy goes, I'm... I... In my day,
and and...
But it's real. And if you're lucky enough to live long enough, you'll go, oh, yeah. Everything old is new again. It's a 100% true. Like, everything you think is happening for the first time in the world is happening for the the billionth time, and you don't realize it.
It's it's... I don't know why I started talking about that. I just know that that's the take... That should be the takeaway. Is it everything you think you know right now, you will watch go away and come back.
And Okay. I'm sorry. I don't know why you said any of that. Go Away.
Crickets. Yeah.
I mean, the cricket and the thing that vibe... It's hard to know how that happened, isn't it? Wow. How about that? Maybe I had a migraine stroke.
Who knows? By the way, first time anyone's ever said that on here. Congratulations. There should be an award for the first time anybody's ever said that. Anyway, your kid now needle issue.
It's interesting though. Like, making her way four years in using, like, stuff. Did she go to college? Yeah. She did.
Two two months later.
Two months later, she's
She hadn't even put the Dexcom on by herself at that point. Like, she still... She had still... She would sit there with it for so long and just couldn't do it and needed us to do it even up until, you know, however many days before leaving for college. And so she...
The plan was if she couldn't do it, she was gonna get it all set up and find somebody. She didn't know anybody. You know, find somebody. Can you push this button for me? Yeah.
But she ended up doing her.
How would you essence. How would you quantify how the last four years have gone?
Oh, she's amazing.
She's amazing. Diabetes.
Yeah. She's amazing. We... She got set up for success in Alaska. I mean, like, just...
Yeah. Absolutely amazing.
How did they set her up how did they set her up for success?
Well... Okay. So we got to we we got to go into the children's wing, so I was able to be with her even though she's 18. And it just so happened, like, I mean, this... Like, God just hit his hand, I feel like, in so much of this, like, all the steps.
I wouldn't have seen that she was drinking so much or going to the bathroom except for on an airplane. You know, all these things. Like, all this stuff led up to it. Being so close in proximity, like, something's wrong, all this stuff. And when we got to the Children's Floor, the the head nurse is like, did they tell you if you had waited five more minutes that she...
How close it actually was53:03
Your outcome would have been totally different? I don't I don't know why she said that to me, but that has just stuck in in my head. Like, just so thankful that we got her there in time and all of that stuff. Anyways, so another thing that was just kinda crazy is they're diabetic... There's a diabetic educator there.
So there was no endocrinologist. And I felt like they told me in all of the state, but I don't know if that even could be true or if that's just, like, my trauma remembering it that way. There definitely wasn't one at the hospital, which is a big hospital. No endocrinologist. So...
But there was a diabetic educator who worked with, a doctor out of DC, and we Zoomed with him one time. And she actually... She came back the day that Kate got moved to the Children's Floor. She came back from maternity leave, had zero appointments all day. Like, she showed up early or something, didn't have herself any appointments.
She... Her name was Olivia. I don't even know her last name. Amazing. She basically, like, lived with us, taught us...
And we had already been through, like... You know, I had learned sliding scale then. I was learning carb count and correction factor calculations and all... You know, trying to, like, going through the book with the charge nurse and doing all this stuff, trying to learn on my own and texting my husband and trying to, like, just... And Kate was a no.
I mean, she didn't wanna hear about it, plus she was just... She wasn't herself yet. Like, she just wasn't herself. She's still having grammatical errors and just not talking right. But, anyway, this Olivia was amazing.
And somebody at some point early on told us, like, you... Eventually, you'll get on a pump. I didn't know there was such a thing. I had never heard of such thing. Eventually, you'll get on a pump, and and all of this will be easier.
And I said, I want the pump right now. And I just kept saying that to everybody who came in. My insurance is amazing. My husband's public school teacher here in Michigan. Insurance, amazing.
I... We have great insurance. We want the pump. We have great insurance. I want her on the pump.
I want her on the pump. I I told everybody who who Who would listen?
The room. Yeah. We want her on the pump.
And one day, Olivia comes in and... Well, a a different volunteer came in. She's like, it's like Christmas morning. And so this is day two. She comes in with Dexcom and all the stuff, and she's like, I love it when insurance are so good, and they can provide you with all this stuff.
And she brings us all this stuff. Day four, Olivia comes in with Omnipod. I didn't I don't... I didn't know there were other pumps. I knew nothing.
Mhmm. She... Her husband is a type one diabetic. She says this is what my husband's on. She said there's a new one coming out.
This is June '22. June 25 is when she got diagnosed. She says that there's... Omnipod five is coming out. We can't get that yet here in Alaska.
And, actually, we couldn't get it in Michigan for a couple weeks or maybe even a month after we got home. But, anyways... So she's like, this is Omnipod dash. We're gonna get her set up on it. And she's like, we're...
She's going to go away to college in two months. Because we were talking... Like, we were talking... Is... Do I send her to college?
Like, how do... She's gonna be two and a half hours away from home. We don't know what we're doing here. And she's like, oh, no. She's going she's going to go to college.
Well, Kate's like, I don't wanna I don't wanna do this pre bolus and wait for my food to get cold and and, you know, all this stuff while I wanna be normal. I don't want people looking at me like, what are you doing? You know, go get your dining room food or your dining hall food and sit down like a weirdo and wait for whatever time. And so Olivia's like, oh, Lunjev. We're gonna put her on Lunjev, which burned.
So, hey, Fias. We're gonna put her on Fias. She's not gonna ever have to prebol us. Still to this day, she's never prebol us in her life.
Oh, that's cool.
And Olivia was like, you... We wanna set her up for success. What she... What what she wants to do. Is she gonna be weighing things in a dining hall?
No. So you're not gonna weigh anything. You're gonna eyeball everything. You're gonna figure it out. It's gonna be okay, but you're you're not gonna try to...
You're just gonna... So she whole plate swags always, and she's incredible at
it. Cool.
And Olivia said, we're not gonna... You know, Kate's like, well, I don't wanna... You know, like, she's always been... She loves sweets. She eats very well.
Like, she's very... You know, she loves her veggies, her salads, all that stuff, but she also loves her sweets. And she's like, you are not taking away your sweets. We're gonna take out sugar drinks, mainly pop, but... And and we're gonna take out real maple syrup, which she's added back in.
Settings, food, and getting it right57:45
But she's like, those are the those are the things we're gonna take out, and and you can do you can do everything else. And so that's that's how we started.
Yes.
So we're day four
on this pump. But you... Basically, by having luck and running into a person who is working there whose husband has type one diabetes Right? That's the launch you get. Yes.
Yeah. Just having having a knowledgeable person there to talk you through these little things.
And I didn't even know... Yeah. I knew nothing, like, until I got into your group and... Which was a couple months later or maybe a month later. I can't remember.
And that was from a different Endo told us to... But, I I found out, like, how rare it was that people are, like, saying they have to wait six months or whatever to get on a pump. I'm like, bullcrap. You don't have to do that. Just have to have to find the right people.
Right? Like, you have to find the right people to fight for it. Because clearly, I mean, we were in it on day four. I don't know what she did, but she made it happen.
And Well... And you had you had the insurance, and then you had somebody motivated to help you. And, yeah, who knows all the reasons? But, yeah, I I would say that it's a coin flip whether you get a knowledgeable person, and it's a coin flip whether you get... Like, I still...
I saw somebody arguing yesterday. You should really do MDI for six months. Like, somebody comes in and says, hey. My kid was just diagnosed. I don't know what to do.
You know, what's your best advice? And somebody goes, well, definitely learn shots and a meter. Do it for months. And I was... I actually jumped in.
I was like, look. I... Just let me be honest here. I've never held an insulin pen. I've seen one.
I've never held one. I've never used an insulin pen in my entire life. And, you know, I wish we would have gotten a pump sooner. I don't...
For sure.
You know?
I've had people I've had people in the group get... Kinda get after me a little bit about it too. But what... I'm like, my girl is stinking intelligent. She would figure it out.
Just like we had... Like, you might have to figure out a pump later. She'd figure out MDI. She would... I have no doubt.
Yeah. She gotta figure it out.
A lot of catastrophizing every question. Like, well, what would you do if it went away? I'm like, well, a, it's America. I have insurance. Like, there's a Walgreens every 45 feet.
Like, I feel like we can work it out. I... Listen. I... In that in that thread, I said, look.
It's a couple things. I think it's about understanding how insulin works. The delivery system's not all that important for taking for taking care of yourself. Right. You know, there's a lot of access.
If you have access, access is everywhere. So if, you know, if that's not a problem, then I don't think that's a concern. I've never held an insulin pen before in my entire life. And, hey, I said, let let me shock you here. We do not have a prescription on hand for long acting insulin.
Like, so... And my wife every year used to say to me, Scott, you really have to get, like, a long acting insulin script. It should be in the house. And I'm like, yeah. I don't think we need it.
And now, she's 22, and she's had diabetes since she was two. And since she moved to a pump, I've never had a script for because one... That's interesting.
Well, because... We have... We do have one, but, you know, have we ever ever ever used
it? No. Because if something goes crazy...
We take them on vacation with us.
I'll call the Endo's office and go, hey. Guess what? First time in twenty years. Like, to me, it feels the same way as, like, when my wife's like, hey. Keep that.
We might need it one day. And I'm like, throw it out. If we need it, we'll buy another one. Right. Don't remember.
Is ever coming up again....
Ever been a hoarder. But now that I have a kid with diabetes, you better believe I'm a hoarder of supplies. It's ridiculous. I definitely hoard supplies. But I...
I'm not that about anything else in my life. Like, get rid of it. Get rid of it. Get rid of it. Much more Yeah.
Minimalist, but not when it comes to diabetes.
Yeah. But I think the bigger point is that, like, it's to me... I mean, maybe you could disagree, and that's fine. To me, it's about how the insulin works and how the food impacts you. The the delivery system is secondary.
Like, are you gonna have a better... Like, listen. Is it gonna go better on, you know, a DIY app? Is it gonna go better on an algorithm you can buy from a company than if you're just randomly shooting in someone with a needle and you don't really know what you're doing? Probably.
But you're also... You'll be okay for a couple of days. Right. You know what I mean? You can keep yourself alive.
Also, you can keep yourself alive without short acting if you, you know, just inject long acting more frequently. So there's ways to cover your insulin needs for a couple hours till you can get to the the guy. You know what I mean? Like, I don't know.
Yeah. I I always am the type of person that, like, I don't want her to be anxious about this because it's... She's been more anxious since she's been diagnosed, and I want to relieve that as much as I can.
Yeah.
So I... We even have eye ports. Like, because of her needle phobia, she can do an eye port. Like, she did that in the hospital. She can do that.
So we even have those, and we take those. Or if she goes on a trip by herself or whatever, like,
she takes
that with
to Arden. I was like, Arden, why don't we just get an eye port and put it in? I was like, you're good with the the things, and we'll try it a couple of times. See what you think. And you know what?
Her response was more about the disappointment that she would have in herself for having to do that. That was interesting. Yeah. She was more like, listen. I don't I don't want that to have to be the answer to my problem.
Not that it wouldn't be or... Because it's actually a great little device. Like, you know Yeah. It is. Yeah.
It's fantastic.
Not that it wouldn't be or anything like that, but she was... She... I I felt that she was... She would have been disappointed in herself if that's how it has to end. Mhmm.
So I was like, alright. Well, here we go.
So the other thing that Olivia did to, like, keep... Get us... Launch us is she... From the very first... The beginning, we were the ones changing settings.
She was available to us twenty four seven. I don't know if I, hopefully, I wouldn't get her in trouble with that, but she was amazing. Like, we could get ahold of her literally anytime. She had a brand new baby, so she was up at all hours, and she was fantastic. But she told us at the beginning how to change settings.
So if I would text or call or whatever and, like, this is going on. Okay. What do you think you need to do? And, like... So we...
From the very first week, which was our first week of diabetes, we were doing our own settings. And I think that that just, you know, it set us up for success.
Certainly does. Yeah. Having the autonomy and the knowledge to make settings changes is, I think, one of the biggest predictors of success. So, yeah. That's awesome.
Well, this Olivia person, fantastic.
She's amazing. Amazing. And we wanted to cancel, like, the rest of our trip. We still had another... After she got out of the hospital, we still had another week in, Alaska, and the the whole team was like, nope.
You're you're enjoying our state. You're doing this. So the next day, we went on this Denali bus tour. Like, no signal, no anything. I'm terrified the whole time.
We have enough sugar to, you know Mhmm. Handle everybody if everybody had a... It was it was
all I think every one of us has been on some sort of excursion the first time where we're like, we're just gonna be normal. But the whole time you're sitting there going like, oh my god. Oh my god. This is gonna
be I'm not normal.
Yeah. Yeah. We're not normal. It's not normal. Does anybody know?
This is what's going on with my kids sitting over there. I am not... Even if it's just a car ride to the store, we have all felt like I... Listen. I've I've had that experience literally going like, well, I'm gonna go to the store and take Arden with me.
And it feels like, I don't know how am I gonna accomplish that. You you know what I mean? Like, in the very, very beginning. So... Yeah.
Listen. It's it's crazy. I... You know, it's just the opportunity to be exposed to information and quality direction. I I mean, you're...
I think you're making the point of of how valuable it's. Also, I've said expose or exposure a couple of times. We should call your episode Northern Exposure probably. Oh, perfect. Yeah.
Perfect. Is anyone gonna know that was a TV show about people living in Alaska? Probably.
Right. Right. Right. Oh, even if they don't, they probably... I mean, I don't know.
I don't know if it's worth rewatching. I'll just be honest.
No. Probably not. Yeah.
And we found out last night Arden's never seen Breaking Bad. We were all like, what? So we're trying to get her to watch that. Alright. Anything that we have not talked about, anything that you wanted to say?
Oh, gosh. There's there's a lot more. I don't know if you wanna hear it
all. No. No. Good. But I just...
Do you want to?
You're you're chatty, and so... Which is fine. It's a podcast. It's awesome. But I I don't want I don't want us to talk about one more thing and eat up all your time.
So, like, I wanna focus now on, like, what else do you wanna talk about?
Okay. When we got home, we went to an adult endo thinking that was gonna be the thing. It was the right thing to do. She was 18. It was horrible.
Two endocrinologists they left crying1:06:09
The person did not know anything about her pump and was giving us wrong information that we already knew from just being... Like, we've been... It'd been a couple weeks diagnosed at this point. And, so that was really scary adult. And I and I read things all the time now about adult windows not being great Mhmm.
Lots of times. And, yeah, we experienced that firsthand. Kate and I both left that appointment. We're not criers, and we have been since this since diagnosis, but we weren't before that. And we've just both left there crying like, how can we trust this person when she doesn't even...
Like, she doesn't even know we're pumped. She doesn't even know what's going on. And and the only thing that came out of that whole appointment was that she wanted us to go to a pump class. And this pump that we're already making all the changes, and we know what we're doing, she doesn't know what she's doing.
She's like, could you take notes and bring them back to me, please?
Right. Exactly. So I had some doctor friends. I called them. They got...
They said there's this pediatric nurse practitioner. She's amazing. She's actually in the group, and she's the one who told me about your group. So they said, you you go to Lisa. She is absolutely amazing.
So they got... We left. We were, I mean, it was, an hour and a half away. We drove straight there, and she got us in immediately. And it was, like, coming home.
It was kinda like another Olivia, very much... I mean, just fantastic. So that that... She has been great. So we've never even seen a doctor.
Like, she's only seen the nurse practitioner.
Mhmm.
And now she's waiting to... We're on a waiting list to get into. She's 22 and out of college and all that stuff. So we're actually waiting on the adult endo. She goes in November.
But anyway, so...
We have... Okay. So... We have the moment coming. Arden just made an appointment with a new endocrinologist because ours...
I I I haven't said this in a while, but it deserves to be said again. Very, very rudely decided to prioritize her own life over ours. And she and she retired and she retired. I couldn't believe it. I'm still I'm still...
Lisa actually left. She works for a pump company now too, and it's the same thing. But she was 22, like, it's time anyway.
That's fine. I literally tried to talk my lady into divorcing her husband because he because he was moving for this amazing job opportunity. I was like, you've been married for so long. You must be sick of him. Why don't you stay here and help us?
She's like, I'm gonna leave. And I was like, alright. But we we we think we have a line on somebody, and we're gonna go. But I don't know how it's gonna be. Right.
You know what mean? Like, what if I get in there? And they're like, what? What's this newfangled thing you got on you here? And they're like, oh my
Lisa always said, I'm just Kate's insulin dealer. I don't need... She's like, she's amazing. All the stuff she does is amazing. We don't...
That's all I... That's all you guys need me for. You're... I'm her insulin dealer. And I don't know.
Just her whole attitude, and Kate, like, hates doctors for good reason. Like, she's been to a million all her life, and Lisa was one that she actually didn't mind going to.
Oh, that's good.
So I'm hoping her new one is
Yeah.
Is good too.
Well, good luck. Okay. Next... Go ahead.
Our next trauma was, you know, going away to college at two months. Crazy, terrifying. I happened to meet another mom in a in a in a college transition group. Her kid was going to the same tiny little private Christian college that my girl was going to. He was gonna be a freshman.
What colleges will and won't do1:09:26
He's... He is 12 years in. He was diagnosed at seven, so I connect with this mom. It's gonna be okay. She's gonna be okay.
We go away to college. I can't believe you're not allowed to ask anybody to follow your kid or to help out or anything. Such a shocker. Like, what do you mean? My kid's going away where they know nobody, and they're gonna live hours away from home, and they're not...
Like, you're not supposed to ask an RA to follow numbers, and you're not supposed... Or to get a Sugarmate text or any... Like, just completely blown away that if we see your kid having an emergency, we'll call 911. And I'm like, well, her nasal spray is right here. Like, it's gonna
be taped
to her back. The r
a is just a crackhead kid too who, like, know Right.
Needs couple extra bucks. And, actually, her r a, she had already asked before... My girl's a rule follower, but it was before she knew that she wasn't supposed to. And the girl is already like, oh, I'd love to follow numbers. And she she actually did, and she was fantastic.
Yeah. And we didn't ever need her. But I just was so shocked at, you know, we'll call we'll call 911, and that's all. And that's, you know, like majority of schools. That's what they do.
They'll they'll call 911, and, you get an EMT that's... Or at a high enough level that they can, you know, administer glucagon because so many
That's all just
are at those That's
like lower
level states.
Is protecting against liability. That's all.
Oh, I know. Oh, I know. For sure. So... Okay.
So then six months in... Or six weeks into school, this mom that I'd connected with, I've been texting. She's like the only mom I know is at the school. She's helped me a ton. Her kid dies of a low on my daughter's college campus the other freshman....
Hell did you just drop on me? Wait. What? Yeah. Yes.
Are you serious?
I am serious. So hello trauma. We're back in the thick of it. Right? Like, she's...
They lived down in Nashville. She's driving up to this... My... To the school in Indiana, and, she's texting me and... Yeah.
Uh-huh. He died of a low in his bunk.
That's insane.
Jeez. In the middle of the day. Yeah. He's an athlete. He's...
And it's like if somebody on that campus... Like, she's getting alarms five hours away. Mhmm. What's... What good is that?
You know? Wow. Like, what good is that? She call... She does everything she's supposed to do.
She calls and campus security gets there in time, and, actually, they're yelling out his name as they're coming in to do a well check. And type one, an older kiddo down the hall, hears him, comes running because he knows he's diabetic and, like, what... What's going on? And they are able to get a pulse back. But...
I mean, that's how, like, that's how close he was to being able to be saved, but he became an own... Organ donor.
That's ins... Oh, it's terrible.
Insane. Yeah. Insane. I mean, just traumatic and heartbreak and and all the why us? Like, my girl's been diagnosed at this point three months.
This kid's 12 years. He handles it... You know, he's on a pint... Pump. He handles it beautifully.
He's a college athlete. Like, he knows what he's doing.
Probably just got too active, came back and fell asleep or something like that. You know, something so simple. Ugh.
Crazy. Yeah. Crazy. So a year after his death, I started a group online. I call it ACT on college campuses, like advocating change for type one diabetes on college campuses.
Got a few thousand in there. Got some great people, Jody and Roz, working alongside of me. Like, we can't get anywhere. Everything is liability. Like, you cannot.
I just don't understand it how you expect these freshmen to go away to college knowing no one without any support. Like, get even... There's so many great kids that would love to volunteer. My girl's school came around her in the other diabetics on campus, like like nobody's business. Like, my girl had so many people following her, getting Sugarmate text, everybody wanting to be...
After after he... After Connor passed away, they wanted they wanted to support her, which is awesome, but it just tells me, like, these kids, they would have done this before. Mhmm. Like, they would do... People are awesome.
College kids are... They're awesome. They're they're just at such a great age, I feel like, to learn about type one diabetes and to learn, hey. You could help save a life by knowing how to do this nasal spray or by... You know, like, I don't know.
I just wish that there was something we could do for these freshmen before they build their own community. Six weeks in, you know, you don't you don't know anybody well enough to ask, hey. Would you follow me? Like, it's just awkward at that age. They wanna be typical.
You don't know if they're gonna be, like, valuable in the moment and things like that. Like, Arden had, you know, three, like, lifelong terrific friends. And, you know, after her high school prom, Arden had a seizure. And the... All the girls were here together.
We weren't here. It's a story I've told before. But, like, point is is that, like, you know, I was able to wake up those other girls in the middle of it and it was kind of fascinating. There were three of them and one of them was the action taker. And one of them kinda froze, and one of them wasn't as helpful as I would have imagined they would have been.
It was just kind of interesting to see, like, what happens when the rubber meets the road kind of situation. Right? So you don't really know who's who. And not... I guess not...
Unironically, the girl who reacted the best eventually went to college is becoming an RN.
Oh,
wow. But point is is that, like... You know what I mean? Like, you you can set up delegates when when when stuff goes wrong, you don't know... You know what they say?
Like, when the bullets start flying, then you find out who's who. Right? Like... So... And you don't know who that is ahead of
time. Right. But... But we can't even get those...
Oh, no. You're not even... No. Like... And...
With liability... Even though... Even if they have nothing to do with it, and they just ask, would you be willing to volunteer? You know, like, that puts them at liability. I hate I hate that word so much.
Yeah. Well, because at some point, some person's gonna have a poor outcome and then go, well,
who
who can I blame for this?
Right.
You know? And then that's... That's what they're gonna avoid. So...
So we've created a lot of awareness. Like, we've definitely been in touch with, like, the National EMS. Of course, they can't make a decision on letting, all levels of EMTs be trained in glucagon because that's a state decision, but they have a scope of practice that we have petitioned to get put in, that glucagon be trained at all levels. We've we've talked with Red Cross. We we...
Baqsimi was great. Like, they they would love to... They would have loved to have worked with us if we could have ever, like, gotten somewhere with this. We... They had us send a representative from our group down to Friends for Life in June '24.
Like, I mean, we've got we've got a lot of awareness, but everything is just liability, liability, liability, and it's
And it got changed. It's not gonna change anytime soon.
So I know.
Yeah.
Those poor freshmen, though, just for, you know, a couple months. Gosh.
Well, you... Till they get their community. You know, it's funny because within your story, the point is made. Right? Like, you're you're...
Somebody says, oh, she's 18. Like, I have to talk to her now. Like, she's 18. She didn't know what she's doing.
Right.
You you you know what I mean? Like... And they'll say that then. Well, they're they're at school. They're 18.
They know what they're doing. I'm like, no. They don't. You're out of your mind. Like, you know, do you have any idea how many times my...
My daughter's 22 now. Half the time what I get from her is, dad, I'm an adult. I'm an adult. Till something really gets sideways. She's like, daddy?
And I'm like, yeah. Yeah. Okay. Because she's still she's still young. I'm not saying she's not out learning or growing or that she's not capable.
But once in a while, in these really tough situations, you might need somebody to turn to. And, you know, when you turn and no one's there, it can be over... Again, you don't know who you are till the bullets start flying. So Right. Like, you know, some kids, you know, get it together faster, some slower, some need help, some never do.
I I don't know. To blanket just say, well, they're 18. They're at school now. They're adults is such a cop out that every college gets behind. And not just about health stuff, by the way.
They do it about everything. I'd like to know my kids' grades. I'm not allowed to tell you that. Yeah. I mean, I'm paying for it.
You you know what mean? Like Right. What do you mean? It's all just so that they just wanna stay out of any kind of legal entanglements about anything. And I don't know that I blame them.
I just... It's frustrating on this side of it.
I know. It it... It's like even even on our college campus where they really did want to help and whatever, and we're like, oh, we would sign whatever liability for us. Like, we're... You know, it just...
No. You... They just... They can't.
Yeah.
Or their lawyers don't let them or whatever. You know what I mean? It's it's just... No. It's just liability and
What else what else you got? Also, we're
gonna have put
we're gonna have to put a warning in this one. I don't usually I don't usually do that. Sorry. You know, you just drop that like a...
I know. I know. Well, I thought we'd get to that way sooner, but then
we ended up talking about our diagnosis way longer than I thought. Oh, you're chatty as hell, Julie. I don't know if you realize that or not. I love... By the way, I would love...
The
one on one, I'm great. Don't put me in front of a group, which I think I was feeling before. So I was like, ah, because it's... How many people are gonna be listening? But...
I'm introverted.... Someone.
I am. Anybody who knows me knows how introverted
I am. You've made that up. Alright.
Go ahead. Keep going.... Trauma. I had a girlfriend who was a therapist and is like, let me sit with you in your grief, and she was amazing. And she did exactly that, and I would go and cry and all the stuff.
And she would help me put it all back together. And then the other way that really helped me with my trauma is helping people in your group. People like Andrew who first brought it up, he kept saying to me, I need to be on the podcast, and he talked... He he talked to you about my nerdy math and helping his his daughter.
Helping people she has never met1:19:31
And
Fatima from Bahrain, like, she's a good friend of mine now, which is just kinda crazy, but I helped her son. And I've helped just a bunch of people get their settings dialed in on o p five and auto because it's what I know. Do I know manual? Nope. Do I know any other pump?
Nope. But if you're on o p five and auto, like, I figured out how... My daughter doesn't wanna think about diabetes. She doesn't wanna look at numbers. She doesn't wanna babysit numbers.
Mhmm. So we had to get it all dialed in. So her, carb ratios are, you know, to the nearest decimal point, which nobody ever knows that you can do decimal points.
Mhmm.
And that's always the biggest thing I think they take away. But, I follow... I followed, I don't even know, countless people. Not that I've ever asked anybody, but some people will be like, can you follow me for a little while and help me, like, figure out where I need to make adjustments? Or they just send me screenshots, or I'm following another girl.
Never met her in person. Right now, I've
been following her for a year and a
half trying to help her get her stuff. You know?
Truly, that's lovely.
That's my that's my way of healing. Right? Like, I'm giving back and and wanting to wanting to help in in that way. And...
I'm gonna take credit for that, by the way. I I mean, I made the group. I did...
You did make the group.
Yeah. No. No. I... It's your work.
Yeah. It's your work, but I'll take credit for it.
You take credit for it.
And then
the other thing about the group, though, that is, like, I met a friend who was going through the exact same thing. So Kate was in June. He was in November. Both of them were freshmen in college. And I met her in December in the group, and she...
I call her Albuquerque Amy. She lives down New Mexico. I'm in Michigan. Like, there's so many reasons why our friendship shouldn't work, but she's still the person four years later that I text most. Is it about diabetes most of the time?
Nope. Not anymore.
We have friends.
Yeah. It is about diabetes, you better believe she's the first person I go to. And just having that community of people in your group that you... That understand where you're coming... Like, they truly get it.
Yeah.
It's... And if you can talk one on one and find one on one somebody, that... Like, that has been just huge for me in my in my healing.
We struggle with this, like, managing the group. I do. And I I hope the people who help me are listening to this right now because we don't want people to DM each other because because of scamming. Mhmm. But if that wasn't a thing to be concerned about, I wouldn't care about that.
I mean, a lifeline.
Yeah.
A lifeline. Yeah. I don't know what I would have done without her without... And I knew that. And I'm not a rule breaker ever, But I I I knew that was your rule, and I still DM'd her.
And I and I, by the way......
Go through the same thing.
I'm not mad. Like, do know what I mean? Like, I... Listen. I delete things a lot that are for rules that as I'm deleting them secret time, I don't actually care about.
Yeah. It's just... It's a bigger picture thing. It's almost like... I don't know.
Do you ever you ever seen this?...
Can't match everybody up.
Though. I know.
I know.... Be such a huge thing for people. If if there was nothing else I got out of your group, having her
amazing.... Like a diabetes Tinder thing where you could meet friends?
Yes. Exactly. If if you're the diabetic, you meet another diabetic. If you're the mom of a... I mean...
Alright. I'm gonna tell you something. I have no idea if this is doable, but let me put it on my long term goals list. I'm just gonna write Tinder
for for sure. Like, if I had not met her, I don't know. I have no idea. I'd be in my grief still for sure.
I'd be... Because I don't... There's gotta be a way to take it, like, out of there because they... You don't want people getting scammed. Like, look.
In the end, it's not my fault. If you get scammed on Facebook, it's got nothing to do with me. But I don't wanna I don't wanna be the one who makes it easy for people.
Right.
You know what I mean? So you have a rule. You can't DM people. Like, you have to, like, respect people's privacy, like, that kind of stuff. Having said that, I see people being helped all the time and making friends like this, and I'm happy about it.
It's the same thing when, like, people are like, you know, hey. I have some insulin I wanna give to somebody, and I have to go, I'm sorry. Facebook doesn't allow that. And then I take it out, but, like, meanwhile, I'm oh god. I hope you find somebody to give that
insulin to. I hope that somebody gives it to you. Yeah.
Don't... Like, I wouldn't pass... I couldn't get... You know, when people start going, like, I wanna sell my stuff for something, I'm like, you definitely can't do that. Right.
But, you know, there's there's a lot of value in there. So you don't look the other way, but sometimes you just slow walk deleting something. You know what I mean?
Like, right.
I'll delete that in an hour. You you know what I mean? Like like
Make sure they get the help they need, and then we're getting rid of that
because it's against the
rules. Rules.
Right. You know, like that kind of thing. I'm much more worried, be perfectly honest, with something called follow farming that we definitely don't want to to let happen where people are trying to start their own digital kingdom and they think, oh, let me let me come steal these people out of here. Like, you know... Yeah.
So that's a real... And not because I don't... I'm scared to lose the people. That's not why. It's because most of those people will then monetize the people that they take out of there or something.
Actually, side note, but I actually had that happen. A bigger a bigger group that if I said the name, you would know them. They... When I first started the group for college campuses, they got in contact with me, and I thought it was great. It's a bigger name.
They're gonna help me out. No. They they wanted my people, and they wanted me to advertise. It was really a bizarre. It was a very bizarre conversation.
I went into the Zoom meeting super excited and came away like, what just happened? It was so weird.
I... That you just said there was a... So I... When you said if I said the name, I'd know it, I don't know that that's true. I pay very little attention to what's going on in the diabetes community, very much very much on purpose.
But at the same time, to hear you say there was a meeting, and then when you got there, what you learned was they were trying to grow their Facebook group off your ass, that part doesn't surprise me at all. Everyone is a scumbag.
A... But it's like a well known organization.
I don't care.
Like, I was just shocked. I was shocked.
People...
But that... Then I learned early, like, you just have to be careful.
I will not go down this rabbit hole today. Okay? But the the desperation that social media is causing in people is the reason that I need more clicks. I need more followers. I need more people.
Like, this thing is rampant. It's... I... I'll I'll say it again and again, and I I swear to you, I am being a 100% honest with you. I do not want your money.
I am not trying to sell anything to you. You wanna come on the cruise? Come on the cruise. Cruise doesn't make any money for me. It's a...
It's barely a breakeven, to be perfectly honest with you. Okay? Like... But I... That's a thing that I think is nice for people that can afford it that want to do it.
It is not a thing that enriches me. And nothing that I pay my electric bill with or put money in my savings account with or anything else comes from the people listening to this podcast or the people in that group. I am very proud of that. I do not I I will fight this as long as I can the way this... The way the Internet works right now.
I will fight against it for as long as I can. Everyone else has pinched their nose and dove in with two feet. And you are just something they are gonna they are gonna get together in their group so they can tell somebody we have this many people. We have this many clicks. Give me money.
So you're being sold to everybody. Just just so you know. It's a really... It's a... And I
had people mad that we as parents were... Because it's a lot of... I have type one diabetics in there too and college students, but a lot of parents wanting to do... You know? And they...
The kids need to be the one to do it. But, you know, and there's groups out there for college kids, and there are, but I can... I can't tell you anybody that I've talked to personally who were... Whose kid would join one of those groups. My daughter certainly wouldn't.
No. The She wants
to be normal. The kids
need to do it. The... Listen. Everybody's different. The way people do things is different.
Don't... This running around telling everybody, well, it should be like this. It should be like that. Everyone says the opposite of whatever they see. I saw a woman the other day say, I'm so excited.
My... You know, there's a post about Dexcom g seven. I got a bunch of people together talking about Dexcom g seven and g eight coming out. This woman's like, I'm... I love g seven.
It's always within 20 points for me. And then it doesn't take five seconds for some guy to go, that's horrible. 20 points off. And I'm like, how do you know we're meters right? Like like, what are you saying?
Like, don't always... The the... Do I wish the CGMs were perfect? I do. They're little plastic things.
They're not $20,000 meters in the hospital. Okay? Like, they're little plastic things that's... That are reading the interstitial fluid under your skin. Just be happy.
Okay? Like, it it works as well.
Saves you some pokes. Right?
Like, it saves you some pokes. But my point is is that whatever you say positive, someone's gonna say the opposite negative.
Right. For sure.
And if the answer is kids need help when they go to college, then someone's gonna go, you need to learn how to do this on your own. If you said, you need to learn how to do this on your own, somebody would say, kids need help when they go to college. Right. For sure. Everyone's just wants to take the thing they think they know is true and then disagree with anybody who's not saying it.
Like, I understand how it all works. But, like...
Yeah. And like I said before, I've had people... You know, when I talk about my daughter going on a pump on day four, oh, she should have been MDI for a while first. It's like, oh my gosh.
Yeah. You you did the opposite of what I did, so it's wrong.
Right.
Yeah. Or I have a problem with something. You're definitely gonna have a problem with it too. That's not necessarily true, by the way. Right.
Yeah. There's a difference between sharing your experience and wanting everybody to believe that your experience is a reality for everybody, which is not nearly the case. Alright. Anything else on this list? Because we're getting a little long here.
One last thing. I'm just gonna talk about my amazing daughter. So she traveled to Greece and Italy one and a half years after diagnosis with a college class and rocked it. We learned quickly that foods hit very different, and and their sugars aren't our sugars. And so there was a learning curve there, but she did so good, and she was only 0.5 in.
Good for her.
And then she went, summer of, '25. So last summer, she went, on an eighteen day engineering mission to Kenya, with some other engineering students, and totally rocked it. And she... And now she graduated in May. She's a mechanical engineer.
She's in the aerospace in... Industry. She got her dream job. She is a rock star. Her last couple years...
I mean, her a one c's been... I know that that doesn't have to mean anything, but her a one c's 5.0 to 5.3 the last couple of years and ninety five to 96% in range. I mean, she's, like, she's just a complete rock star, and I'm so proud of her. So...
Well, first of all, kudos to her and you for raising her, and I'm sure that husband did something, but it doesn't sound like much. And and... But but Omnipod five, FIASP in Omnipod five, a five a one c without pre bolusing?
Yep. Never once in her little life. Even when she could, and I see her sometimes that they're like, dude, the food's on your plate. Just do it, but she won't
until she starts me two things. Does she have a certain way of eating? Is this a very low carb lifestyle she's having?
Not at all. It's absolutely everything.
What's the secret, Julie?
The secret is dialing in those carb ratios. Her carb rate... So we use four different ones. They re... They range from...
Yes. She's resistant. They range from 2.2 to four are her carb ratios. So breakfast is 3.5. Her lunch is 2.2.
Her lunch is her most resistant time. You
said she's a small... Like, a smaller person. Right? You said? Yeah.
Uh-huh. May I say, again, not a doctor, not advice. I think GLP would cut her insulin needs down significantly.
Yeah. I think so too. But how in the world are we gonna ever get
her out of the bus?... Zip ties back out from Alaska. Bang. You hit her in the ass with it. Boom.
Just like that. I think that's illegal. But, I mean...
Will she ever even... I don't know if he'll get a doctor that would prescribe it for her. Oh, please. You can
get that per... That... Just ask for a dual diagnosis in type one diabetes insulin resistance.
Yeah. Hopefully, her new... We don't know this new doctor. Hopefully, she'll be great about it. I have wondered about that.
I think...... Not with the car brace... That car brace tells me everything I need to know.
I know. Yeah. Yeah. Yeah. I know.
Oh.
I know. But she still has
that a one c. Right? Like, so that's...
That's awesome. She's... Are you kidding me? Yeah. Fantastic.
She does great. Her graphs are amazing. She has great control, and and she's just... She doesn't wanna look at numbers. She doesn't wanna focus on it, but she knows things.
Like, if she hears her pump click three times, she knows she's getting a little more basal than usual. So she goes in because she's very, very bolus heavy. So she will go in and
Take a look.
Correct whatever needs to, yeah, whatever needs to be because there's... But she doesn't... Otherwise, she waits for her alarms at one eighty and seventy. Like, she doesn't look at it. But that's why we had to have those, the ratios dialed in so much.
So that's what I
help people with.
Does not sound like she'd be interested, but if she ever wants to come on and be on the podcast, I'd be interested in talking to her. And probably not about the diabetes management stuff, but just the other stuff. And, second thing is you're awesome for knowing how to do that for helping other people. You're awesome for sharing it here. So is what you're telling me, it's all settings and understanding the impact of your food?
It's... Yeah. It's all carb ratios. That's all it is. It's just carb ratios and auto.
We only run-in auto, never once flip it to manual. She doesn't wanna think about it. She doesn't wanna deal with it. She doesn't want to have anything to do with it. So I've helped set her up for success to not have to think about it.
Settings. Settings. Settings. People can listen or they can't. It's fine with me, but, it's...
Most of this is settings. So Yeah. Yeah. Okay. Well, I mean, also, Omnibod must be thrilled right now.
They're probably like, oh my god. Okay. All we hear from people is complaining.
Listen. If they wanna pay me, they can pay me. You know how people I've have?
Every pump company just hears complaints, by the way. I I shouldn't put it right on them. They don't hear any of the good stuff. They only hear the, like, it doesn't work. I...
I'm
That's probably true. I've never told them how amazing it works for her.
Yeah. Hello? I just wanted to call and let you know how great everything's going. Right. Yeah.
Things don't work that way. Alright. So I'm gonna say goodbye. This was awesome. You were excellent.
I have a question to ask you afterwards. Okay. But I'm gonna do this really fun thing right here. I'm gonna say, tell me the name of the Facebook group that did that to you. Today's show is sponsored by Tandem Diabetes Care, the Eversense three sixty five, and Touched by Type one, who you can learn more about on Facebook, Instagram, and at touchedbytype1.org.
Head now to tandemdiabetes.com/juicebox and check out today's sponsor, Tandem Diabetes Care. I think you're gonna find exactly what you're looking for at that link, including a way to sign up and get started with the Tandem Mobi system. I'd like to thank the Eversense three sixty five for sponsoring this episode of the juice box podcast. And remind you, if you want the only sensor that gets inserted once a year and not every fourteen days, you want the Eversense CGM. Eversense c g m dot com slash juice box.
One year, one c g m. If you or a loved one is newly diagnosed with type one diabetes and you're seeking a clear practical perspective, check out the bold beginnings series on the juice box podcast. It's hosted by myself and Jenny Smith, an experienced diabetes educator with over thirty five years of personal insight into type one. Our series cuts through the medical jargon and delivers straightforward answers to your most pressing questions. You'll gain insight from real patients and caregivers and find practical advice to help you confidently navigate life with type one.
You can start your journey informed and empowered with the juice box podcast. The bold beginning series and all collections in the juice box podcast are available in your audio app and at juiceboxpodcast.com up in the menu. Thank you so much for listening. If you're not already subscribed or following the podcast in your favorite audio app like Spotify or Apple podcast, please do that now. Just hitting follow or subscribe really helps the show.
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#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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Cold open & sponsors0:26
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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.
And I realized you can't make everyone happy. The Dexcom g seven is sponsoring this episode of the juice box podcast, and it now comes in ten and fifteen day wear times. So you can go two weeks on one sensor. That's pretty great. It also has a twelve hour grace period, so you can swap your sensor when it's convenient for you.
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It's covered by all sorts of insurances, and this might be the best part. I I promise you this really could be the best part. Alerts and alarms that are customizable so that you can be alerted at the levels that make sense to you. Dexcom.com/juicebox. There's links in the show notes and links at juiceboxpodcast.com to Dexcom and all the sponsors.
When you use my links, you're supporting the production of the podcast and helping to keep it free and plentiful. Dexcom.com/juicebox. And can you believe the number one prescribed automated insulin delivery system is now even better? Omnipod five is now stronger than ever with algorithm updates, including a new lower one hundred milligram per deciliter target glucose option designed for more time and range and with fewer interruptions for more time in automated mode. That's right.
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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.
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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.
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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.
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© 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.
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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.
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