#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
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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.
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#1975 CGM Burden
CGM Burden
Erika Forsyth is back. She and Scott take apart the paradox of CGM data — why more information can make you feel worse, and how checking every five minutes starts to run you.
Jump to a moment
- The paradox: more data helps the numbers and can hurt the person. CGM access reliably lowers A1c and raises time in range. Erika's question is what else comes with it — because the same stream that makes management possible also makes it possible to watch constantly, and watching has its own cost.
- The belief underneath the behavior. Her framing is a thought most people never say out loud: if I can see it, I'm responsible for responding to it. She's careful that hypervigilance isn't automatically a problem — if it's working and you don't feel anxious, that's fine. The useful test is whether you feel capable of not checking, not whether you check.
- Why it's hard to stop. Scott compares waiting for the next five-minute reading to the part of the brain that enjoys gambling, and Erika agrees it can temporarily regulate your nervous system — which is exactly why it repeats. Being right once also licenses the next check, because catching something proves the watching worked.
- The number is not a report card. Both land hard on the idea that a bad diabetes day becomes a bad parenting day. Erika's counter is that you're doing the best you can without living in your child's body, and Scott adds that you started with whatever tools and knowledge someone handed you — so judging yourself against data you couldn't even see a decade ago isn't a fair trade.
- He tells the story he usually doesn't. Scott describes the first time an alarm went off overnight and the walk to Arden's bedroom where he was certain he'd killed her — and is honest that those years lasted longer than he wishes they had. Erika's point in response is that the season of hypervigilance is a season: it feels permanent while you're in it, and it does end.
- Mental wellness series with Erika Forsyth — The full Scott and Erika catalog on the emotional side of type 1.
- Erika Forsyth, LMFT — Erika's practice — licensed in several states.
- Diabetes Pro Tip series — Episodes 1000-1025 — settings, timing, and food impact, the three things Scott points to.
- Listener survey results — What listeners report about anxiety and management after the podcast.
Every word of the conversation
Cold open & sponsors0:02
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Erika is back1:53
Erica is back. I know you all... You send letters. You send notes. You go, Scott, where's Erica?
I say, I'm trying. She's very busy. Very, very busy. Professional woman has children. She's married.
There's a lot going on. Erica, thank you. I appreciate you being here.
Thank you. Must have to be here.
Yeah. You must have missed me. No?
Yes. Of course. I mean, well, we had the whole summer. You had a busy summer of conferences. We did our our summary or brainstorming session a couple weeks ago.
It's fun. I sent a note to a friend recently. I won't say who it was. And I just texted and I said, hey. Are you okay?
I've been worried about you recently. And they said, why have you been worried about me? I said, well, you haven't talked to me in a while. It must be upsetting for you.
But I'll
They laughed, I laughed, and we chatted. I don't really believe that people get upset when they haven't seen me in a while. That would be insane. Tell everybody what we're gonna talk about today.
Okay. So we... I know we originally discussed this in our brainstorming session about... Around caregiver distress, specifically around the burden of knowledge or the burden of knowing as a result of CGM data. But I think as we talk about it, we can also you can think about it through the lens of someone living with diabetes as well.
But most of it might might be discussed from the caregiver perspective, but just wanted to note that. And before we get into it, I want to definitely affirm that I am a huge fan of my CGM, and I am very grateful for it. In fact, I I don't know if I've shared this. I only started wearing a CGM around at least the the the Dexcom about eight to nine years ago Mhmm. Which I know is is fairly recent compared to, like, your daughter has been on it for twenty years or something.
For as long as as long as it's been available, I think we've had it. Yes. Yeah. I mean, maybe not that very first one, but I I think I think what's interesting... What...
I mean, there's a lot that's interesting about you. But one of the things that's interesting about you is that you have had type one diabetes for so long. And even though we haven't picked through it, I infer through our conversations that you had a lot of struggling years with it. And and it's fine because you you let your personal stuff out just enough once in a while, but you're not like... You don't dig too deep into it all the time.
And so it's interesting because if I met you today, I wouldn't take you as a person who had only had a CGM for the last eight years. Or, like, sometimes I'll interview somebody who's doing so well and their their understanding is so clear and they'll talk about their variability being fantastic and their a one c being low and everything's right. And then I say, oh, when did you start... Come across all this? I just just recently had a guy on who was using AI to tune his loop data, I think.
And, you know, he's just so together when he's talking about it, but has only really started to look into it in, like, the last couple of years. And I... And that's always... I don't know if I should be surprised by it. I am generally surprised by it when it happens.
And so I feel like I've known you long enough now, and I know how you are today. It's hard for me to imagine you before. Don't if that makes sense or not. And I guess that's probably a testament to how far you've come and how much experience you have. But, anyway, I I know I know you use a CGM, and we're not trying to talk anybody out of using a CGM.
Like, they're
No.
Really fantastic. There is other stuff that comes with it, and that's what we're gonna talk about
right now. Well, then that's so interesting. Just on that note, I also notice a common phenomenon of people who have been living with type one for twenty, thirty years. And either because of access or doctors not bringing it up or engaged in what is current in terms of technology might not even have the opportunity or or know how about... I was on a different CGMs prior to being on the DexCom here and there for a couple years, but didn't even actually know about the DexCom till probably ten years ago.
Before CGM, and the fingers that worked best6:15
Even that
Because it wasn't even proposed to me.
Right. Right. Even that, like, here and there for a couple of years. Like, if I said to you now, hey. You're only gonna wear your CGM every couple of months.
You'd be like, no. That's not what's gonna happen. I'm gonna wear it
all yeah.
I'm gonna wear it all the time. So back then, you were sort of like, oh, I wore it, then I took it off, then I did this with it.
Yes. Yeah.
That's... It's just... I don't know. I find I find that fascinating. Maybe at the end of all this, Erica.
Maybe it'll be one of my last interviews. Well, we'll just throw away this, like, professional facade, and you can cry and tell me your whole story. It'd be nice. Okay.
That sounds like so much fun.
Oh, yeah. You'll love that. Few years from now. Don't worry. I'm not...
I got time left. But at the end, we'll do that.
Well, you know what also is interesting? We... I don't hear as much for people who do use the CGM, like, growing up, and I'm... I think I've talked to Jenny about this. Our fingers were calloused, you know, from finger pricking.
And I remember I was told in the beginning, I was around 12 years old, I only finger pricked on my left hand for years because I didn't want to lose sensitivity. I didn't want to damage my nerves on my right hand because I'm right handed. Yeah. So I don't... And for those of you who choose to not use a CGM, maybe still have that.
But it's just something I don't hear as much about is that the calluses and the nerve damage.
Oh, that's so interesting. That's a... Was that direction from a doctor or just common sense? Like, I'll just... I'm losing the ability to, like, be dex...
Like, were you able to be dexterity? You just couldn't feel? Or is it... Was the concern that it could happen?
I I think it was the concern that could happen. So I just... I don't I don't really remember if I was directly told from a, you know, a doctor. But I just somehow only did it. It was easier because you're using your right hand to finger prick on the left.
And I just eventually thought, well, I wanna spare my right hand from having any issues.
Yeah. I would say I would say it's it's a little it's a little detail about raising a kid with type one. But when you're checking blood sugars all the time like that, I was always careful to move around on fingers. But she wouldn't want me to because there were some fingers that were
Oh, yes.
That that she couldn't feel it as much on. And so I'd be like, here, give me this. And she'd be like, no. No. And then she'd she'd give me the finger that she wanted me to use.
Give me the finger. Maybe she was. Give give me the give me the finger that she wanted me to use because it wouldn't hurt as much. And and it's interesting too. Like, did you do do you do the tips of your fingers?
No. Do the sides?
Always the sides. Sides. Never the... That was... I feel like instructed, but the sides and the third and fourth fingers were always the best.
And now I know there are great devices that you can test elsewhere on your body as well. So, thankfully, technology has improved that.
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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.
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I don't know. You just triggered that memory.
Yeah. No kidding. It's funny how it sticks with you too because I still... If I... I don't know how often I check Arden's blood sugar with a meter anymore, like me personally, but sometimes overnight, you know, and I still immediately without thinking, like, milk her finger.
Like, do you know I mean? Like, squeeze it from her hand up to the tip to try to get blood into it so that it'll go easier. And... Yeah. I I don't think that's a skill I'm gonna lose anytime soon.
Alright. So Okay. How do we how do we dive into this?
Okay. So I think kind of it is a general summary and, you know, theme is that, yes, CGM data is... Serves as kind of main two two things. Right? It...
It's... Yes. It's a tool for safety, but we know that it can also become a source of added stress and distress. And it isn't it isn't that we're getting the data twenty four seven. That isn't the issue.
Like, that's... As we know, it's a benefit, and we can decrease our our a one c and increase our time and range, you know, often as a result of CGM data and use. But when we start to use it, when the nervous system becomes reliant upon access to the data and using it as a kind of a regulating mechanism to feel safe in your body. So that's what we're gonna talk about, just noticing what does that look like? What does that feel like?
The paradox of more data12:39
What is this paradox, right, that that can occur with having access to more data?
Okay. I Okay. Gonna say right before you jump in, if you ask me to describe what a CGM does, I wouldn't say safety first. I just... I realized that when you were talking.
When you when you... If you were to ask me what is a CGM for, it's to make better decisions about insulin. It gets a management tool to me. Like, I know it does the safety part, but it's not how I think of it. Now if you would have asked me probably years ago, I don't...
I'm trying to think back to whether or not my... Because I had so much struggle trying to use our... Like, figure out how to handle Arden's blood sugar before CGMs that when I got it, I immediately thought of it as, yeah, I think of it more as a management tool than as a safety device. Get freely understanding what it is. But, like Mhmm.
Okay. I'm sorry. I didn't mean that. I just No.
That's good. That's interesting.
Go ahead.
So so, you know, back back in the day before CGMs, we... There was not this continuous access to data, and that probably felt scary. I I was... I've been thinking a lot about my parents in thinking through this episode of, like, how did they... Did they have it easier because they didn't know and have access to this information in some ways?
Obviously, they probably felt a lot more stressed and nervous than having, you know, two children, let alone one, not knowing where they are and their blood sugars. But that also wasn't even an opportunity. So I can't even... It's not even maybe fair to compare. Yeah.
Like... So... Yeah. So we we shifted from not having less information to more, but that can also feel just as scary sometimes. And so as you were talking about this kind of empowering data is helpful.
And that's interesting that you didn't think that's not your first thought. I'm gonna uphold that as the safe... It's not a safety mechanism. But I think the the paradox is what do you... When you have all this information in front of you, often, you feel like you have to do something with it.
Mhmm.
Right? So there... That's there... That's the burden. So you have...
“If I can see it, I'm responsible”14:54
You could have this thought, like, if I if I can see it, then I'm responsible for responding to it. I'm responsible for doing something with it, or perhaps I'm using it to help me stay calm in a regulated state.
Okay.
Okay. So what occurs... And, also, I wanna give a caveat as we talk about these different themes around CGM data that there are certainly stages when being hypervigilant around the data is very normal. And and if you are operating in that way and it's working for you and you do not feel anxious, then being hypervigilant as a caregiver or person with diabetes, that's okay. I'm not...
None of this is trying to trying to say it's wrong or you shouldn't be doing it, but just something to notice. Right? Okay. So hypervigilance can look from the outside and internally as the parent like you're being a really good diabetes parent. Right?
Because you are... You're... Maybe you're checking the CGM repeatedly. You're you're looking at it every five minutes for the display to change. You might have it up in multiple places, you know, at work or at home, on your laptop or computer, on your watch, on your phone, on the SugarPixel, SugarDash, multiple locations.
Again, none of that is wrong or bad.
Mhmm.
And that might feel like, okay. I'm I'm a good parent. I'm always I'm always checking. I'm always aware. You might be watching trends to maybe make dosing adjustments.
You might be anticipating or catching the next glucose change. Like, you're seeing the arrow go up and you're watching it every five minutes, and you're gonna try and catch it with a microdose or or half of a gummy. You're looking for patterns, and you're always maybe mentally calculating what's gonna happen next. So, again, these are... None of these behaviors are wrong or bad.
But what I... I'm wanting to encourage you is, you know, first of all, these these behaviors are gonna be rewarded, right, because you are maybe catching the low or catching the high or keeping your child in what feels like a very medically safe range. But what happens is that it might evolve into a form of anxiety without even knowing it. Okay? Because you you have this framework that, you know, I'm not I'm...
Maybe I'm not anxious. I'm just staying on top of things. Or maybe I am anxious, and I'm staying up top of things, and that's okay. This is my new life. This is how I'm gonna, you know, act as a care and be the best parent possible.
Can you choose not to check?17:39
So what we're wanting to encourage to kind of bring the awareness around noticing this distinction is whether you feel capable of not checking. Right? So we're not saying
It's not a compulsion....
Am I saying... Yeah. Yes. Right.
Yes. Okay.
Okay. Should I keep going?
I I would... I was gonna throw in here that I remember having a conscious, like, thought after Arden was diagnosed, keeping in mind that it was, you know, before CGMs. I thought, oh, I didn't expect this to happen, but now one of my children has this problem. I guess this is what's gonna kill me. Like, because...
Okay. Like, I guess I'm gonna die earlier or have more health issues or not take as good care of myself because now I am involved in this process that human beings are not supposed to be involved in. Like, I'm acting like an internal organ. Right? Like, a thing that is working mindlessly every millisecond for most people, I'm now gonna have to pay attention to and not nearly as as fine tuned and as as micro or as as I should be because that...
I can't I can't mimic what the body's doing, but I'll just have to pay attention to it as closely as I can and do as much as I can. That's probably going to kill me. But I found myself feeling like, well, okay. Well, if that's it, then that's what has to happen because Arden wasn't asked to be born. She certainly didn't ask for diabetes.
I asked for a child. Here she is. This is my responsibility. Now I I don't I don't I don't expect everybody to feel that way. As a matter of fact, I would imagine some people would look and say, no.
I... Like, you know, this is what's happening. I've heard people say, like, you know, it's their thing. It's gonna do what it does. I'll be as supportive as I can.
I was I was I was fully ready to step in front of that that that bus and and was doing it. I'm very glad that I don't have to do it like that any longer. But maybe because that was my mindset coming in, the data doesn't feel overwhelming to me. It feels relieving to me. So...
And maybe it's where you come into the data to some degree. Although, I'm assuming some of it's gonna be your predisposal to anxiety and other issues like that. But for me, a person who doesn't feel particularly anxious, I was... I don't know. Like, I guess that's it, really.
Like, I was ready to give my life for it, and this is way better than that. So, anyway, I'm sorry. I I just... That's that's what I got so far. I'm jumping now.
I'm jumping out now because you're doing such a nice job.
It's good. Yeah. It's good. So I think... And and of course, I think it also can be said that we need to be vigilant as people with type one or caregivers or people with diabetes.
There is an expectation or a purpose around that. So I think that the challenge is recognizing when that the vigilance has shifted into hypervigilance, and you have that feeling of needing to constantly monitor. But I also wanna recognize that as a caregiver for a child who's two years old, that there's probably no other way
Yeah.
In that in that period of time. Or when you're changing devices or growth spurts or, I don't know, fill in the blank with a very... Variability where maybe you've been in a kind of stable place and things have shifted. And so there might be that season of hypervigilance from the vigilant perspective. So just wanted to normalize that too.
Okay. So what what happens in... You know, what's been described as the... As a feedback loop type of system. Right?
Obviously, we have it as a feedback loop for our automated insulin delivery systems or whatever algorithm you might be using. If you are with a CGM, there is that infrastructure in math of an algorithm, but noticing what is that doing for you in your nervous system. So you are unsure of what your blood sugar is or what your child's blood sugar is, noticing what is going on in your body. Is your heart racing? Is...
What's happening in your body while you wait22:07
Are your thoughts racing? Are you feeling actual physical symptoms, other physical symptoms of anxiety, sweaty palms? Even... I'm talking about for, like, those either minutes or moments or in between the five minute Yeah. What's word?
Waiting... Change. Yeah. Waiting for that revolution to go around one more time.
Yeah. Yes. So noticing what what is going on within your body. If you are someone who's looking at checking every five minutes, you check it. You you might experience that temporary relief.
Okay. Every... You know, arrow's stable. They're in range. I'm in range.
Then you... Then the next time you check, the glucose is you... Maybe you have an arrow up, arrow down, and you have that increased anxiety, which then reinforces that belief system. Oh, I gotta keep checking.
Mhmm. Oh, yeah. Oh, the idea of, like, what's about to happen, I think, is more damaging than... I don't know how to say that then. What is happening?
Because you're you're sitting there feeling like, well, I just need this thing to spin around to the fifth minute, like, to pop up again. I mean, I'm certainly not the only one who's, like, pulls down on the screen to refresh the Dexcom app to get, like, a number when I need it. Right? Trying to rush it even though it's not gonna work. And then it pops up.
And as soon as you have the number, even... I find that even if the number is what I was hoping for, there's still a voice in your head that goes, well, yeah, but five minutes from now, like, what could I... It's it's almost like it's almost like whatever part of your brain that would enjoy, like, gambling Yeah. Is tortured by this part of it. Like, the...
The part of your brain that likes gambling23:45
Like, let me just spin it again and see what happens. I I I guess there's gotta be a connection there. Right? Because if you put money to it and you set... Because...
I mean, what is a what is a a a slot machine?
A slot machine.
Yeah. It's it's just like, oh, I... You could put in your life savings and pull on it and go, oh, no. It's okay. The next time it'll hit.
I'll do it again. I'll do it again. So whatever it is that makes you feel like the next time is gonna give me what I want,
there's not a one, two, three step fix.
Oh. Oh, was thinking we could, like, design a new UI system that wouldn't give people that feeling, and then maybe I could finally retire. But... Okay. No.
Go ahead.
Well, maybe you can try that. Yes. I think... Well, it's not necessarily fixing. It's having this awareness, right, of noticing, yes, it can temporarily regulate your nervous system.
You do have that. Okay. Phew. Yes. We gave that huge pre bolus or, oh, they're out in recess, but they're they're still in range.
Or I'm working out, and I'm still in range. So you you get that feedback. Your nervous system says, okay. We're okay. He's okay.
We're safe. Right? So then you... So, yeah, it works in that way and re... And establishes that firm belief that by looking and checking and getting the number, I'm I'm gonna be okay.
But then, right, as soon as you look and the arrow's down, you have that thought of, oh my gosh. You know, the... I'm... They're dropping. I'm not okay.
And then that creates that stronger urge to keep checking because it's now become... It... It's also... It's the reassurance that things are okay, but then also is the trigger for things are are not okay. I'm in distress.
Right? So
Unless your personality is such that you're like, oh, finally, this situation needs me. Like, I can see how this could, like... I could see how this could poison all kinds of personality types. Right? Because now suddenly if something needs to be done, it's like, well, here...
Finally, I knew it, by the way. That's also what a lot of people will joke with me when they're when they're interviewing me. A lot of people will... This won't... I hope this doesn't seem like a left turn.
They'll say when my... Before my kid was diagnosed, I saw all of these things. And I would go to my spouse and say, I'm telling you they have diabetes. I saw this, this, and this. And somebody would say to them, you're being silly.
You're looking too closely. A lot of times nurses get told, like, it's because you're a nurse. You think you see it in everybody. But then eventually, the... Somebody gets diagnosed, and there's almost of a feeling of, like, see, I told you so.
I knew I saw that. And because I was right, it gives you license to continue to be that hypervigilant because you believe, like, oh, I was right. I'll be right about the next thing too. Yeah. This is terrible.
How crazy is it? How crazy is it that something this valuable can be this valuable and this damaging literally at the same time? Ugh. I'm sorry. Keep going.
Well, I almost... I, yeah, I just feel like it's it's... There's so much benefit, but sometimes I almost wish that there'd be, like, a, you know, a user beware this might increase anxiety kind of thing. I don't know. Right.
It's a silly thought. But it happens for for people also living with it for years and years and years and years, and they didn't realize the the fluctuations that were occurring
Mhmm.
When they were maybe in range managing well. Right? So it can it can skew things in the opposite direction, but we still really love c... CGMs. Okay.
Yeah. So so... Yeah. So it can... The...
This distinction can shift from I can check to I need to check. And, again, if you're hearing this and you feel like, well, of course, I need to check. My my daughter's... You know, the... They're preverbal or they don't know what a low feels like.
Yes. For sure. There is that sense of needing to check. But noticing, again, this isn't like the fix, but just noticing in the background, what are some of those beliefs that you might start to experience in your mind, right, that if you don't check, do you have the thought of you're being irresponsible? Right?
Like, if you pop in the shower for ten minutes and you miss one of the five minute readings, do you get out of the shower and maybe the arrow's going down? Are you then feeling like I'm... It's... If I didn't notice or I I took a break for five minutes, and now I'm... It's my fault.
I'm an irresponsible parent. You know, a good parent would have been watching or having the the the alarms going off while I was in the shower. I should have known. And then ultimately, you know, if my if my child's having a bad diabetes day, I'm having a bad parenting day. Yeah.
A bad diabetes day, a bad parenting day28:57
And so again, I guess.
Okay. Do you know the feeling of... I'm sure you must, but it's the first time that you sleep through the night and never wake up once overnight. And then you wake up, your eyes open, and your first conscious thought is, I didn't wake up last night. What if Arden's dead?
Like, that's that's the first thought. Right? Like... And then she's not. And then that pressure lives with you forever.
Like, it feels like you were on watch in a foxhole and you let your buddy sleep and you said, no. I'll stay up. And then you you fell asleep. And when you open your eyes and everyone's not been shot, you you... The pressure of, like, how you almost let everybody down Mhmm.
It rewired me. Like, I think everyone listening knows what it feels like to wake up the first morning having meant to be up overnight and it not happening and that that panic. I bet you I I I bet you I described it perfectly. Does it happen to you when you have diabetes?
That was a great analogy. The... Does that feeling
I know it doesn't.
I I was saying
Because it's for you.
Probably not the same because I know... Was trying to think about this as a parent. My two girls do not have type one. But that feeling of... There's that guilt and blame and pressure to keep your child safe.
Yeah. Right? Now in in the world versus diabetes, it is different. Right? Like, it is different.
So I cannot fully understand what that feeling is like as a parent because I am not... Diabetes is in my body. Right? So I know what it feels like. And, thankfully, my body wakes me up when I'm low.
Also, you wake up in the morning alarms. You're alive. So there's no, like, I wonder what's going on. Because the walk... I don't wanna sound, like, overly, like, dramatic.
The night he thought he'd killed Arden31:18
But the first time this happened to me, my walk to Arden's bedroom, I thought I killed Arden. Like, I I did. Like, I'm gonna go in there. She's not gonna be alive. I did this.
Like like... And by the way, how ridiculous is that? Because people need to sleep. You you you know what I mean? Like like, how am I supposed to stay awake for the rest of my life?
Like... And then that pressure hits you. Like, I'm like, by the way, this was before CGMs. I used to get up and check her blood sugar a number of times overnight. And and, anyway, like, it's just...
Yeah. I... It's not the same for you. I just don't know what your version of that is. Maybe it's not around sleeping.
Maybe it's something else. I don't know. Maybe that's too far off topic. That'll be for the
episode we do with
you right before I quit. We'll do it then.
Yes. I think it's the fear. There's that... It's the it's the burden of responsibility
Yeah.
As being the caregiver, the the parent to keep your child alive.
Let everybody And I let everybody down. Like Yeah. We... I'll share something, like, reasonably personal, but I I talk about enough on the podcast that Kelly and I are thinking of moving as, like, when we retire. Right?
But we're not gonna... We're thinking of moving and then working and then retiring. Not like I'm trying to retire right now. I'm too young for that and not interested. But we spent last weekend looking at possible places to live.
And we were in this one house, and I said to her, I didn't... I said, we were getting ready to leave. And I said, let me run back upstairs. I didn't see the room on the left. And I went upstairs, and I went into the room, and I thought, oh, this would have been a great bedroom for Cole when he was younger.
And it's not that I don't live in a reasonably nice house. I'm not trying to say that or that my kids came up in squalor or anything like that. Like, I'm certainly don't. That's not the case. But still standing there, I thought, oh, I let everybody down.
Like, I didn't make the possibility of this happen soon enough. Like, if I could have made this happen ten years ago, we all could have come and lived here together, but now because I didn't do that, he's 26 and she's 22, and we're gonna move away, and this isn't gonna be their center. And I messed up, like, the staging of my family to set up the last part of my life. Had that thought in a split second. I was like, oh, I did it.
I screwed up. I screwed the whole thing up. Like, I I I... Even though we're here now, I got here too late. I just...
I did. I showed up with the fire truck after the after the building was gone. I was like, I did. I'm here. And everyone's like, nope.
Sorry. House burned down. You screwed up. So, anyway, we go down... I go downstairs.
We go outside the... We get in the car, and she looks at me, and she goes, are you okay? And I said, I I think I was crying. And she goes, what's wrong? And I was like, I let everybody down.
And she's like, what are you talking about? And then I told her and she's like, you're out of your mind. And I was like, I'm like, no. I'm like... Anyway, there's...
It's... Whatever that feeling is right there, it... I've I've had it so many times around diabetes. I can't I can't count all the different places where it's existed. And at the same time, I can also count one more time that I overcame that feeling.
Right? Like, oh my god. I almost could... When I got to that room and she wasn't dead, I was like, I didn't almost kill her. I slept through the night.
This is ridiculous. And then I hear old heads talking about, you guys, man, we live without these things forever and blah blah blah, and you don't even know. Like, I... Everything's fine. And and I thought there's gotta be some blend in there of everything's probably gonna be okay because we've done a lot to get ready for this, like, preplanned.
We'll still be vigilant. But if something does go wrong and this is the leap you have to make in your head, I think as a parent of somebody in this situation, said if it really does go wrong and I have done everything that I could have done, it's not my fault. Like, I didn't let my family down by not being able to move ten years ago. Right? Like, I...
That's crazy. When you get to that place, it's so, I don't know, relieving. Like like, I'm happy to be in that place with diabetes where I I can firmly say out loud, I do everything I can to stay educated, to help Arden, to be ahead, to put stuff on her that'll help her. And if something should go wrong, it is... It's not my fault.
And it's not her fault. It's the circumstances. Right? It's hard to think of it that way, but that's the truth. Having said that, probably nothing's gonna happen to her.
So what am I gonna do? Live my whole life tortured about like that? And, anyway, I don't know what what point I was able to give that part away, and I'm also not sure if I would be this thoughtful about it if something actually happened to her. But at least it's a fake it till you make it kind of a situation. And I don't know what making it means.
Like, I think the only success around being the parent with a child with type one, I think the only real success I'm ever gonna feel is if I die, and she's still alive when I die. I honestly think that's gonna be the only way I'm gonna feel good about this, is if when I'm closing my eyes, I look up and go, she's still here. And I'll probably, with my last breath, think, god, I hope that keeps going like that. And who's gonna help her? And that's...
I swear, like, that's just how it feels to me. So... And I'm fairly emotionally regulated even though I did cry in a house. It's not mine. Also, didn't really like the house even.
That wasn't even the point. So I think... I'm sorry. I've gotten this off track.
No. It's it's so... It's good, though. And I think that what it's like the the shame is so strong and the fear is so strong
Yeah.
That shame is just right there ready to to, like, knock on the door and inhabit your life
But is it is it waiting every five minutes if you're staring at the CGM like that?
Right.
Right. Which is why I tell people all the time, I set limits on that CGM. And if it doesn't beep, I don't look. You gotta get to that place. Anyway, I'm sorry.
I took I took you
out of No. That's good. And
I took out of your pace.
The the I do want to emphasize as you're sharing these anecdotes and and stories that the caregiver burden, I I do believe that it is. It's way harder to be a caregiver to a child living with with diabetes than a person living with it because of all of those feelings and thoughts and not being in the body.
Yeah. You have no idea. You're guessing about everything Yeah. All the time. Not just about the physical part, but about how they feel too.
You're guessing about the whole thing constantly.
The whole thing. Yeah. The whole thing. Right. So I just...
I don't know if I've ever said that before, but... I do
Thank you.
Believe that that is... Yes.
It's nice.
It is hard. Okay. So what what do we do next when this number, the data, or even the, all the things that you're looking at in the reports is a reflection of how you're doing as a parent. I know we've talked a bit about this around the sense of agency and autonomy, particularly in the beginning when you're trying to figure it out and you want to have a sense of competence, and it becomes not only how well you're doing, but how well you're feeling inside as a parent. And so when you look at the time and range percentage at the end of the day, which I would maybe recommend if you're doing that every hour or every day, maybe pulling back a little bit if you're able to at a certain stage.
When the number becomes a report card39:18
If you're noticing that feeling of, oh my gosh. They are in this percentage time and range. I did a terrible job today as a parent because you are doing the best you can, not living in your child's body guessing what they're doing and what they're eating and how they're interacting, particularly, you know, as they're at school. Yeah.
I... Can I just say that outcomes are not indicative of effort sometimes? And I think this might be one of those situations. You know, like, to look at the end and go, oh, the time and range isn't what I wanted or whatever. I'm a terrible parent.
Those two things are not connected. A terrible parent wouldn't know what the time and range was and wouldn't be looking. You know what I mean? So, anyway, your outcome is not your effort. It's...
Not in this... Not not not if you're putting in the effort. So it takes practice to get good at this. I... I'd also I'd also tell people, don't forget that you started with the tools and knowledge that somebody gave you.
And if they were not well taught or well considered, you're you're working with... You know, you're trying to you're trying to hammer in a a nail with a screwdriver. And then at the end, looking at the nail that's all dinged up and not in the wood and going, well, I... I'm I'm a terrible carpenter. I don't think that's the case.
So I'm... Yeah. Anyway
Yes. Yes. Okay. And what we talked about in the beginning is this... The illusion of control.
Right? Going back to what we said in the beginning that because you you can see it, sometimes we believe all the time that we should be able to control it.
Mhmm.
And we know that we can we can do our best, but we cannot completely control all things all of the time. And so we can have more data with the same uncertainty, right, of why... I'm doing this thing. Why is this not happening? And that reinforces that sense of...
But just because I can see it doesn't mean that I should have known what to do or I did my best, but I have this now data right there as opposed to, you know, if you're finger pricking, you finger prick, you wait two, three hours, and you don't have that that, like, minute to minute emotional feedback of how poorly you did in bolusing for that food. Right? So just... Again, I'm not suggesting looking less, checking less, not using it as data for... In making informed decisions, but noticing what that feedback is doing as you're seeing the number and you have more data, but you might still be experiencing that uncertainty.
Right? So you're... Might be feeling like, if I have all this information, why can't I make it better? Why can't I figure this out? And as we've talked about before, it could be a lot of different reasons of experience, time with living with it, education, knowing how to to make the tweaks if you need to, trusting the alarms.
There might be a couple different factors going on. But just going back to the basics of seeing the data, feeling like because I have it, I should know what to do. And that isn't always true.
Okay.
Moving on from that... Noticing that because we... Again, because we have this great access to data, we often go from... You use the word, you know, management. Like, you use the data to help you manage the disease better or in in tighter control.
Mhmm.
And often, we go from that management perspective to surveillance where, you know, you are... We are looking at it all of the time.
Yeah.
Because then it goes from, oh, I guess I... You know, we're still climbing after that meal. I'm gonna now correct, or maybe the the pump will correct, or I'm gonna give myself an injection or my child an injection to correct as opposed to that anticipatory, I'm I'm gonna make sure I'm gonna surveil the... All of this, and I'm gonna anticipate the problem. Does that Yeah.
Does that distinction make sense? Yeah.
Yeah. Of course. It turns into a... I I mean, you almost... You're lying to yourself about how much control you have over what's happening next to some degree.
I also made me wonder about this. I've had people on before who talk about, like, the gamification of the blood sugar Yeah. And how it leans into their... Like, what they actually enjoy and that a lot... There are people who come on and say that they really enjoy managing the blood sugar.
That if... That it it, like, hits their pleasure centers the right way. Does that make sense that it would do that for some people?
Yes. And for people who are maybe more... I don't know if the math minded is the correct word, but kind of in the engineering problem solving mathematician type brain.
We all hear what you're saying, Eric. And, yes, those people generally seem to be engineers when they say that to me. Yeah.
Or just kind of like minded in that way where it does... It doesn't feel like a a personal attack or an affront or reflection of who they are in their value, in their identity, and how they operate in the world, it is to them for some of these people that you are mentioning, maybe it is just data.
I... And I stole that idea from those people. Like, I want you to know that, like, the stories I told you about feeling terrible, they're a very real and longer part of my life than I wish they were. But also the way I feel now, I'm a 100% being honest about. Like, I do not...
How long the terrible part lasted45:10
I don't feel judged by diabetes or by numbers, and I haven't for a very long time. But it's not... I can't take credit for having figured out how to do that. I just listened to other people talking and thought, well, that's clearly not how I want to be. So I'm gonna have to just decide that this is not this is not a report card for me.
Plus, I've heard people for a long time say, you know, it's just a number. It's not a report card. But then you have that kind of feeling in your head. Well, like, well, it's not just a number because if that number stays there for twenty years, what it is is, you know, a pretty invasive eye procedure. And, like...
So you know what mean? Like... So you're like, it... It's not... It's disingenuous to say it's just a number.
Yeah. Right? And it's not wrong to say if you don't treat it like it's just a number, everyone's gonna be gone at some point. Like... So, like, there's a real...
I've never made that noise in the podcast before. You're all welcome. And... But, like, you know, like, both things are true. Mhmm.
At the same exact time. So I act like the numbers are important. And when they don't go right, I don't act like it's my fault. I can say that I've learned a lot along the times, and the times they don't go right, I guess I'm putting air quotes around that, when they don't go right, it's not as frequent. So in the beginning, when it's always not working out Mhmm.
I can see where you'd think, like, this is gonna be like this forever. And that's where the benefit of, like, of being able to step back and see it a more macro way would be valuable. There's no way to do that when you're in it in the beginning because it just feels like you're killing somebody all the time. It is literally what it feels like. I am not being heavy handed.
Okay? It just feels like you're killing your kid. And by the way, I've listened to adults who told me they stopped eating at times because they felt like they were killing themselves. And so, like, it... Because you're doing a thing, it's not going the way it wants, the outcome is what the outcome is.
You're you're understanding of what the long term effects could be from that outcome, and people just shut down. They don't know what to do, which is why the basis of this podcast is get your settings right, understand timing, understand the impacts of your food. Because I genuinely believe that most of the problems we talk about can be mitigated significantly by being well educated upfront. Mhmm. I just think that's how the world works in general, but I think it definitely works that way around diabetes.
Anyway, surveillance is... To get back to your question to your question, I do speak to people a lot who will kind of giggle through, I'm a very type a personality. And I'll say, what does that mean? And they'll say, I'm a pretty... I have a pretty controlling personality.
And it does lend itself right into this diabetes thing very quickly. Now with respect to those people's stories, they eventually will tell you the part where that started ruining the relationship with somebody, and they had to stop. So I... Again, I think hearing that up front might help somebody who's about to lean into that to say, okay. That's the thing I need to avoid.
I've heard enough stories from people that say that surveilling this thing is not the way to go. Anyway, those are my entire thoughts around surveillance. So
good. Like, the the experience of feeling like you're actively killing your kid when you're actively trying to keep them safe. Right? That experience in your body is so excruciatingly painful physically and emotionally. And that is where probably majority of all caregivers are when their children are diagnosed.
And and and then for people who are able to manage themselves in in the new stage. I know we always say it's, like, kind of, you know, in the early stages, but it can happen at any time. And what I'm also wanting to highlight is you are sharing that there is there is a boundary around that time period, like, that it it can feel like that's never going to end and that it's permanently chaotic and that you feel like you do need to surveillance or do... Be in surveillance of the blood sugar to try and, you know, stay ahead of that feeling of I'm actively killing when I'm trying to actively keep my child alive.
The season of hypervigilance has an end49:28
Listen. I'll oversimplify the whole thing. If you feel like that, go listen to the pro tip series and just understand it halfway. And six months from now, a lot of this will be alleviated for you. Not to minimize it or how difficult it is, but understanding how to use insulin takes away a lot of this.
And it also takes away wildly swinging blood sugars that make CGMs alarm all the time. Lows that you feel like are dangerous get, significantly... Listen. Go to juiceboxpodcast.com on the front menu. Right?
And there's a little survey there that you can take or there's the results of the survey. If you click on the results of the survey, you will see people report how there's... There are significant, like, frequent low blood sugars, how much fewer they have of them now after listening to the podcast than they did before. Like, you you can... There's ways to...
Like, I think sometimes we get caught in the wrong fights. You know what I mean? Mhmm. You know, like like, oh, my kid got low. They're always getting low.
This is our problem now. These are lows. And I think maybe the lows aren't the problem. Maybe how you got to the lows are the problem. And so, anyway, whenever you're falling in a hole, it's always smart to look back over your path and go, I wonder how I could have avoided this instead of how do I continually pull myself out of this hole.
And I don't know. I'm I'm sorry. Did that get preachy? I didn't mean for it to be. What's the next step, Jen?
No. Let's just take a look at number eight. Okay, Erica?
Okay. Okay. Yeah. Okay. And, yes, I think it's it's two things.
It's knowing how to when when you have the ability and time and energy, like, reconciling the two of I'm I'm just trying to keep my child alive to, okay. I'm gonna learn and teach myself how to avoid getting into the hole. What needs to happen simultaneously is that the grace towards yourself and and the insulin, as we've... I've said before. Like, we need we need both.
Mhmm.
Yeah. Sometimes we need more grace. Sometimes we need more insulin. But holding those simultaneously are are really important to navigate life with with diabetes.
I guess balance is important is what you're saying to me.
Yeah. Yeah. Yes. Okay. So this next point, I want to preemptively say this is not to pile on more blame or shame.
What your child reads in your reaction51:53
But when you're in a space to kinda step over and look at what the hypervigilance is doing for your relationship with you and your child. And this might be when they're eight years old. This might be when they're 18 years old. This might be when they're 28 years old. But just having that awareness when you feel like you are able to, noticing what does this constant monitoring communicate to them, to my child.
You might... You you are trying to keep them alive. You're trying to communicate, I love you. I'm keeping you safe. But they might perceive your actions or your words that something is wrong with them or that their that their blood sugar or their data determines whether everyone is okay around me is a big one.
Right? Like, my my glucose or my... You know, whatever numbers on the screen determines whether everyone is safe or calm around me. Again, it's gonna... I I don't want...
I'm not saying this to pile on the blame or shame as a caregiver.
Put it on me for a second, Erica.
Okay.
You and I have known each other a number of years now. Yeah. And I assume you've listened to some of the podcasts along the way. And I would tell I would tell anybody listening, you listen to this podcast from front to back, and what you will hear is somebody who has a deep respect for their daughter and thinks they're doing... And thinks she's doing a great job.
Go ask her what she thinks I think of her in diabetes because she'll say he doesn't trust me. That's it. I I... That that is the simple statement around what you were just trying to say. You are going to because I...
Everyone's going to put that person in a such situation over and over again that their only takeaway can be, well, that person is checking on me all the time because they don't think I can handle this. And maybe they can handle it or maybe they can't handle it. They're still gonna feel like you think they can't do it. And I don't know how to square that circle. I certainly don't know the answer to that because I because had I not done the things that I did, Arden would certainly be in a worse situation.
I think this one gets chalked up to... It's one of the parenting things that if you're a good parent, you're just not gonna come out on the positive side for yourself on. That's it. You just... You don't you don't get to win on this one.
You get to be the person who didn't trust them whether you did or not. And they're safe, and they'll get past that part. That's why therapists exist. They can go. That's when you hear somebody say, oh, go...
Have... Everyone has seen an older person at some point tell their child, why don't you just go tell your therapist? Like like, which which means you're welcome. I got you here. I'm sorry.
It couldn't have been a perfect ride, but, you know, go figure that out for yourself. I'm retiring. It's... I I don't I don't mean to make light of it. I don't think you're getting around it.
So, you know, good luck.
So much of so much of diabetes is... There's this exchange. Right? Of one thing for the other.
Mhmm. Now
from your perspective, I'm hearing you, you know, say that, like, she's she's safe. You know, she will hopefully not have any complications. Her lived experience is that you don't trust her in her management, And she might move through that and work through that. So that's kind of what the exchange is there. I think in...
Along the way, for not only for your relationship with your child, but also for yourself in having that awareness of creating the the emotional... Kind of the healthy boundaries around the emotional experience. If this is just an example of looking at the number and you thought you pre bolus enough or you didn't pre bolus, you forgot, you tried to correct. And you're looking at the number and verbalizing to yourself, well, you know, we we missed the mark on that one. We'll get it next time.
I know I know it's really oversimplifying and hard to do all the time.
Also, sometimes they just ignore it, and you have to call it out sometimes too. You can't just always go, oh, I guess every... It's okay. Like like, sometimes you have to be like, hey. The hell?
Like, just bolus for god's sakes. Like, it's been like that for two hours. Like, what are we doing? Like, it... There's some...
Listen. There's a mix. I'm not saying that this is the end of our story. I would also tell you that I feel... I hate saying that I feel grateful for things that I've that I've worked for, but...
Okay. I I feel grateful that as my kids are getting older, they're still around a little bit, and they're still listening to us, and they're still talking. Because I am now seeing what I think of as another part of parenting that I don't know that everybody gets to be involved in, but the part where they're adults but we're still together, and they start doing the, like, oh, okay. That did... That was for a good reason.
Like, do you know what mean? Like, I like that we're together for this part too. Because I think if you... If your kid feels that way about anything you've done, and then at 18, you're like, go to college and they go to college, then four years later, they move into their own apartment, you never really get to get together again. And you go from being, like, at the end of parenting where you're just getting into that age where they start looking at you and think maybe you don't know what you're talking about and you're on the end of senility, like, on its way.
Right? And then the next time they see you, they're adults and you're actually six years older and you are on your way to senility. Okay? And then they just think of you as an older person. Person.
Like, I love this time right now where we get to work through this stuff because trust me, I'm making inroads on helping Arden to understand that it is not that I don't trust her. Like, she was just in a situation. She was walking the devil's dog all day long. Right? Like...
And I was the one going like, hey. Make sure you stay away from it. Like, you know, like, it's... Don't pet it that close, like, that kind of stuff. And sure, you get to see it as, like, anytime your parents help you with anything, it feels like, oh, they don't trust me.
Of course, that's what it feels like. Everyone... Just take a second, think about your own life. That's what it feels like. And then you get indignant and go, I'm trying to keep you alive or, like, you know, like, that kind of thing.
That ain't good either. Keep that yourself. And, like, you know, like... So I just like that we're... I don't think...
I'm sorry. I just started that sentence three times. But, like, I take seriously the idea that a person's brain's not fully formed until their mid twenties. And I tell you that I think we have time in their early twenties if you're together with them and have a nice relationship where you can continue to mature together and be a part of that process instead of them off in the world having it by themselves and then coming back and applying it to your old later. So I'm...
I think that's going well for us here. I certainly think there'll be a day where Arden will say, like, I think my dad did what he needed to do. For the moment where I take my solace is that my daughter, when she is not paying attention to her diabetes at all, has a six five a one c. So I win. That's all I hear.
And she wins because, you know, all the reasons. And when she is when she is drilled down on it, I see that a one c goes right down to, like, a high five, a low six. And I think she knows how to do this. She knows how to do it when she's got all of her attention to give to it, and she knows how to do it when she doesn't have almost any attention to give to it. And that makes me feel really comfortable.
Mhmm. So... And if she has to hate me when it's over, I guess okay, but I don't see how that has to be. I don't think... Like, I see...
I hear people say... You must hear people say that a lot. Right? Well, I do what I do. If they hate me, they hate me.
At least they're alive. I don't want that. Like, that's not what I'm shooting for. But if that ended up being the case, I wouldn't be happy about it, but I would still think of it from a parenting perspective as passable. I wouldn't give myself an a, but I'd give myself a c.
I'd go, hey. They're alive. Nobody's doing meth. Whoo. You know what I mean?
Meth is my line, Erica.
Yeah. It is. Yeah. Yeah. Yeah.
Yeah. I just don't want them to bar? I just really don't want them to lose their teeth because I think there's no way that people aren't gonna see them without teeth and blame me. You know what I mean? So Oh my gosh.
So, yes, I think there are... Going back to the first example, are there moments as the the caregiver to an older child that you... Where it's definitely appropriate to intervene, not just be like, well, you missed the mark. Let's let's try again. But also when your child is younger and you are wanting to work on regulating your nervous system to model that too.
Like, oh, we missed the mark next time. We'll do we'll do three units instead of two. Mhmm. And so you also are saying to them, we need... We we could have made an adjustment.
You're saying to your nervous system, but I'm okay. And it's not a full experience of blame and shame every five minutes.
Yeah.
So just even verbalizing out loud, not only for for your child, but for yourself and your nervous system. Right. But, yes, there are certainly times where we just need to say... We need to correct.
Finish up strong, Erica. I'll be quiet. Okay.
Okay. So what we want to... Yes. Obviously, the whole goal isn't to check less. It is to be aware of what is happening in your nervous system.
And so as we are inviting you to think about, can I? Can you create space between looking and checking? And whether it's literal space, you know, like not looking every five minutes, but every 10. And up in... Hopefully, you do have alarms set where you can trust that you will hear them and that you don't need to surveillance the numbers every five minutes.
Then in that time period, you can ask yourself some of these questions. What am I checking for? Is there something I need to respond to? Or am I checking because I feel anxious? What am I hoping the number will tell me or give me?
Will checking change what I do right now? Can I tolerate not knowing for a little while? Right? And then we've talked about different ways before of setting a timer, distracting yourself with some... Whatever it is about work or some chores, something fun, do a dance.
I don't know. And in that five... And it sounds maybe very simple. But in that five minute period of time, you're building... Your nervous system is able to build and kind of reset trust with the alarms
Mhmm.
And increasing your tolerance of not knowing.
I would also say, ask yourself, how would I feel if my mom was doing this to me? And by the way, know I shouldn't have just directed that at moms, but I've had a couple thousand conversations. And this is not frequently something I hear guys talking about. So once in a while... And it's usually anxious guys when they talk about it.
I will be a 100% honest. But, like, say to yourself, like, if somebody was treating me this way, how would I feel? That's how they feel. I have to regulate myself. Like, go see a therapist.
You know what I mean? Like, don't... If you're having the feeling of, like, I can't just not look at this thing for five minutes, I'm gonna just tell you that's not diabetes. Okay? That's something else.
And to... You know? I don't know. Find out what your co pay is. You know what I'm saying, Erica?
Or maybe
Well, yes. And I
They're microdosing those drugs now too to take the anxiety away. Very effective.
Yeah. Yes. And... But there there is probably a time and a season and a space for when it feels like you you have to. So, again, this is in a time period where you feel like things are are stable enough and your body and your mind is trained to keep looking and checking Mhmm.
And and noticing that, you know, you have when you have the information, it is not always instruction. Sometimes it is. Right? Like, you need to treat the low. You need to correct.
But it doesn't always mean that you have to do something. Mhmm. And I think that's just an important thing to note too. Okay. So shall I keep going?
Finish up. Go, yeah, like, run run right through the tape, as they say.
Okay. So I invite you, what is it costing you as the caregiver to feel that responsibility for everything you can see? And right now, maybe the cost is worth it because you feel like you you have to do that to keep your child alive. And so giving yourself that grace even right now, if that is... If this is how you are operating, it is totally understandable.
But, also, we know that it might not be sustainable for for you and your body and and also the relationship with your child. And so if you're noticing, gosh. This... You know, the technology that's supposed to give me peace is making it harder, and I can never put my phone down because I feel like I have to have this number and knowledge. And so what we are not suggesting again is to become a less attentive caregiver or to check less or to not look at the numbers.
It's to eventually, when it... When the timing feels appropriate, to become more regulated and to notice the numbers, notice... Listen to the the alarms, pay attention to the CGM without being consumed with it or by it rather. Mhmm. And and one...
Just one last thought that regulation isn't the absence of worry. Right? Like, the goal isn't to not have anxiety. The goal isn't to not be worried. We all live with that.
It's a normal, natural response in life, but also with diabetes. Like, we wanna have a little bit of worry and a little bit of, you know, preemptive attention to it. But we wanna shift from feeling controlled by that worry and data to regulate your nervous system to feeling more empowered, like, going to that perspective. Like, this is giving me data to make shifts as opposed to this is giving me data that is either calming or aggravating my nervous system.
Yep. Excellent. You know what I love most about working with you is we are both people who look away from the camera while we're thinking. So I know we're never offending each other when we do it. But I imagine if you recorded us, what it would look like is two people actively trying not to look at each other while they're talking, but that's not the case.
It's fantastic. You, like, you look up into your mind. You look off to the side. I look down and away a lot while I'm talking. And I and I know I Yes.
When I do it with other people, I'm like, oh, they think I'm not looking at them. I'm like, Erica knows. This is awesome. So
Yes.
I love that you put this all together. Thank you. I hope I was in some way valuable in the conversation. I never am a 100% sure. But I really do appreciate this.
I think that, like like we said earlier, just very simply, I don't know that I've ever seen something that is so incredibly valuable and so potentially dangerous all mixed into one thing before. It is really fascinating. But I do think that this conversation dug dug out the reason why it is that. It is because it is not a thing you can actually ignore, and it is a thing you cannot let make you feel the way that we described here. And so the job to me is is is to, again, to reiterate, is to find a way to take that data and turn it into empowerment and not something that's judging you.
If you can do that, I think you're gonna be fine. So that's all I got for you.
That's good. Yeah. Great summary.
Rio will probably be fine. I... And, honestly, I I shouldn't have sounded sarcastic that way. Let me say something. I've been at this a long time.
I have felt every way you can imagine in the last twenty years of Arden having diabetes, and I'm fine now. You really will be okay. You just gotta stay in the game long enough to get enough experience to where you wake up one day and go, I know how this is gonna go. And then you can just trust that what you know is gonna happen is gonna happen. And then everything just kind of, like, I don't know, goes away.
You know what I mean? So free your mind and the rest will fall. That was about it.
I can't... I I wanted to follow-up with the next line, but I couldn't Yeah.
Free your mind and rest will fall. Be be color blind and something to them. I don't know. I don't think you're allowed to sing on YouTube. So...
Alright. Thank you very much. It's great to see you.
You're welcome. Thank you.
I wanna ask you a question, but it's gonna be after a hit stop. It seems that the podcast you just enjoyed was sponsored by Tandem Diabetes Care. Learn more about Tandem's newest automated insulin delivery system, Tandem Mobi with Control IQ plus technology at tandemdiabetes.com/juicebox. There are links in the show notes and links at juiceboxpodcast.com to Tandem and US Med, who also sponsored this episode of the juice box podcast. Get started with US Med at usmed.com/juicebox or call (888) 721-1514.
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#1974 Lower the Threshold
Lower the Threshold
Sian is an engineering student who was diagnosed in the middle of a semester — found in a dorm shower, five days in the hospital, and back at school almost immediately. She also has a needle phobia.
Jump to a moment
- Her diagnosis happened in the middle of a semester, and she went straight back. Sian describes a stretch of worsening symptoms she read as burnout and anxiety — nausea, a panic attack in a campus store, and eventually dreaming about water, which she now recognizes as a dehydration sign. She was found in a dorm shower, taken by ambulance, and spent about five days in the hospital. She never considered taking time off school.
- Everything was explainable until it wasn't. She had a real framework for what was happening — midterms, a stressful program she'd chosen deliberately, a history of anxiety — and each symptom fit it. Scott's parallel is watching Arden lose weight on a GLP and not seeing it, because obvious things aren't obvious when they're happening to you.
- Her approach to anxiety is deliberate exposure. Rather than avoid what sets it off, she describes lowering the threshold of what can cause it by walking into it on purpose. Scott pushes back a little — standing in the cold so you're not cold anymore — and she holds her position. It's also how she handles the needle phobia.
- The needle phobia is sensory, and she has a system. She explains that when she's overloaded she can't hear or see properly, so she has to be sitting up and knows exactly what sequence she needs. A bug bite she scratched aggressively during an injection became an accidental discovery. She's candid that she can't tell whether she's improved through exposure or just understands her own process now.
- She's running an algorithm she didn't set up herself. Sian admits she didn't configure AndroidAPS on her own and has mixed feelings about that, and she and Scott get into basal and insulin on board — her read being that honeymooning mostly affected her basal, and that even a fraction of a unit lingering overnight matters. Nothing here is medical advice.
- Diabetes Pro Tip series — Episodes 1000-1025 — settings, insulin timing, and food impact.
- Mental wellness series with Erika Forsyth — The emotional side of type 1 — anxiety, diabetes distress, and support.
- Juice Cruise 2027 — The Juicebox community cruise — deposits open now.
Every word of the conversation
Cold open & sponsors0:03
Friends, we're all back together for another episode of the juice box podcast. Hey. Nothing you hear on the juice box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan. With the holidays approaching, there might be no better surprise to give your family than the knowledge they're going on juice cruise twenty twenty seven.
Check out juiceboxpodcast.com/juicecruise for more information. What a great gift. Planning a vacation, getting everybody excited, letting them spend the first half of the year really being excited about meeting people with type one, going on a fantastic trip, and getting some sun.juiceboxpodcast.com/juicecruise. Check it out. And now onto the show.
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I'm Shan. I am a a university student with type one diabetes. I was diagnosed when I was 18.
Cheyenne, you said? Shan. Shan. Oh, nice. I wasn't sure how to pronounce your name.
That's lovely. Yeah. Alright. Well, you were diagnosed when were 18. How old are you now?
23.
And you're calling me from school still? Yes. Are you a professional student?
Yes. Effectively at this point. Basically, the... I'm in engineering, and engineering kinda takes forever if you don't take six courses every semester,
Five years of engineering, and co-op2:15
and I
don't. And, also, the school that I go to, they have, like, an internship program essentially that's, like, required. So that tends to make scheduling complicated for everyone involved. So... Gotcha.
So fewer classes per semester.
Yeah. And then also, like, at this point at this point, I've, like, worked for essentially, like, two years in, like, different engineering type roles and stuff. So, like, it's like, it's been five years, but also I've been working for two of those years. So, like...
It's interesting. Do you like the do you like the cadence of it? Do like how it's working?
Yeah. I think so. I want it to be done. I've enjoyed... And this has been a problem, but I've enjoyed working more than I've enjoyed being at school, which is part of why it's taken so long because I did extend some of my work terms more than is necessary, but I also enjoy where I'm working.
So, like...
Is it a paid internship?
Yeah. So that helps too.
So you have to finish the degree to keep the job, but you can you you can have the job while you're getting the degree?
Yeah. Kind of. Awesome. Yeah. I mean, a lot of people get hired out after they finish their degree and stuff if the company is like them.
So, I mean, hopefully, that would happen. But, like, also, I have I have three more semesters of, like, just classes after this. So we'll see where the organization I'm at is, how they're doing in a year. But
How do you... Do you need more school after that, or are you done done?
Like, hypothetically, I could get a master's, but, like, a lot of people get jobs with just undergrad degrees. Kinda thinking about getting a master's though, which I never thought I'd say. But, honestly, master's sounds a lot more relaxed than I initially thought it would be. So we'll see.
What would the masters do for you? Would that be a professional or a personal decision?
So based on a conversation I had with someone I work with, he was kinda talking about how a lot of people who are in engineering and have undergrads end up going into basically, like, management type positions rather than, like, actually designing stuff. And if you get a master's, you're more likely to be, like, focused on, like, a project. Mhmm. So you're more likely to end up actually designing stuff is my understanding of what he was saying, and I kind of would prefer to be actually designing stuff. But I don't know.
We'll... It's it's it's funny because Arden called us the other night. Kelly and I were traveling and we were in the car and Arden calls and she just got out of, like, a first class with this professor. And she's like, I am in love with this guy. And we're like, oh, what...
What's going on? And she's like, he's 60. He's like a little round guy. Like, you know, he's, like, he's so cool. Like, she's talking about her.
She's like, I'm calling my boyfriend now to tell him we're done. You know, like, she just, and this guy started giving her advice, and it was interesting how quickly she's like, well, obviously, this is what I have to do. And and it's occurred to me, like, you know, I'm not saying she's gonna do exactly what he said, but the part that occurred to me is how uncertain the path is and how much and how much it's built by the people you meet along the way and the things that they share and how impacted you are by their opinions, not necessarily those opinions being accurate. And I I start to wonder if there's actually any accurate way to do it or if it's all just sort of, you know, you... You're like a Lego that you just kinda keep, like, snapping stuff onto.
And then one day, you're like, alright. Well, this is all the information I have. I'm gonna walk out now and see what happens.
Yeah. That's the thing that my dad's, both my parents are, like, older, and so they have a lot of life experience and opinions and whatever. And, that's something that my dad talks about a lot where there are certain decisions that he made that, like, looking back now, he's like, oh, I made that decision because, like, someone told me, like, x y z. And that just, like, changed the trajectory of my life in, like, these ways that I wasn't expecting. But...
Yeah. No. I've been thinking about that a lot more recently too....
Could just have bumped into somebody else who told you master's degree. You don't need that.
Yeah. Exactly. Yeah.
And you'd be like, I don't need a master's degree. That guy told me.
Yeah.
It's tough, man. It's tough to figure out. What kind of engineer are you going to be
or? Electrical.
Oh, what does that mean? When all you smart people talk about your engineering, what... Like, what is... Like, some people, like, I'm a mechanical engineer. I'm an electrical engineer.
How did you choose electrical engineering? Actually?
It's funny because I actually... Initially, I started off in biomedical, which was really ironic because I I thought it was ironic and pretty funny because I got diagnosed with type one in in university. And so when I was... When the doctors were like, like, what kind of engineering do you wanna be? I was like, biomedical.
And they were like, oh, that's nice. But I was in biomedical for, like, a year, and then I was working my first, like, internship position, and it was at just, like, a lab essentially, which I enjoyed because it was fun not necessarily having to, like, talk to people all the time. But it was also kind of just, like, repetitive in a way that I didn't... I don't think I wanna do for the rest of my life. And biomedical engineering is kind of an tricky program, I think, because they try to make it...
Like, they try to teach you mechanical, electrical, and biological stuff all in four years, which is
Yeah.
Means you have, like, a lot of knowledge or, like, just very, like, spread out knowledge, which isn't necessarily great for getting specific
Yeah.
Jobs. Like, it's it's hard to get positions as a biomedical person.
Yeah. Yeah. You're not... You don't have a a focus that that gets you into something specifically.
Yeah. Exactly. Hey. Hey.
Give me a second. It just occurred to me. You sound American, but you keep saying university. Are you Canadian?
I am Canadian.
I knew it. I... See how I do it? It's amazing what I've done for you people. Listening, I mean.
Because you sound like you're from here. What are you? In... You're in, like, Toronto or are you, like, in that area?
I'm from Alberta.
Oh, I don't know where that is.
Okay. It's like the middle kind of.
Oh, get it. Wait. Wait. Wait. You know where Alabama is?
Stop it. But you... Don't don't judge me. Okay? Alberta.
That just sounds like a place where the Olympics were once. Contournext.com/juicebox. That's the link you'll use to find out more about the Contour NextGen blood glucose meter. Once you get to that page, just head up to the top and you can click right on blood glucose monitoring. I can even do it with you right now.
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Download a coupon. Oh, and receive a KontoorNext. Oh, there might be a free meter on this page. You have to go check it out. Contournext.com/juicebox.
That's contournext.com/juicebox. Head over there now and get the same accurate and reliable meter that we use. If you're a parent of a child with diabetes, you know nighttime can be one of the hardest parts of the day. You go to bed wondering where their blood sugar is headed. You wake up to check numbers, wondering if everything is going to stay steady until morning.
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Okay. Anyway, yeah. You just... It just hit me. Like, why'd you say university so many times?
You sound so American. So are you gonna, like, ONA soon and, like... Or you're not gonna do that?
I don't know. I was I was curious about that because every time I listen to the podcast and a Canadian person comes on, you're always... You generally pick it up fairly quickly. But... So I've always been like, do I talk like a Canadian person?
And I don't know.
No. You you don't. You sound like you're Interesting. You sound like you're just North Of Kentucky. So...
Alright. Okay.
Again, a place you don't know where it's at. I'm just saying, like, you're not you're not quite... You don't sound like you're up on the border of Canada, you don't sound like you're in the South. You sound like you're, I don't know, in the, like, slightly South of Chicago, maybe a little West region. It's it's not important.
I I I don't wanna get caught up in this. Okay? I I like that you're an engineer. How come you're so smart? Is your whole family a bunch of smarty pants?
What's going on?
Well, my... Yeah. My dad's... Yeah. There's a lot of engineers in my family, actually.
I think it's that. I think that's why.
Is it all wiring? Do you... Like, did... Does everybody's personality, like, trend in a certain way?
No. No? Like Okay. I don't think so. I know it's funny because
my Would you even know?
Well, yeah, that's the other thing is I was just like, would I know that? I'm not sure. Because, like... Yeah. There's......
Find there to be this this fine line between people that... I hope nobody's offended by this. I certainly don't mean it in an offensive way. Between families who are, like, in that space and they joke like, are we on the autism spectrum? And then the ones who don't know to make the joke.
A family that yes-ands each other13:28
Does that make sense?
Yeah. No. That makes sense. That's... Yeah.
Yeah. It's funny because there's people on, like, on my mom's side and my dad's side who are engineers. Like, there's engineers across the board essentially. And... But it's funny because my mom and my dad are, like, very different personalities in a lot of ways Mhmm.
Which, I don't know, my dad, like, my dad, like, really doesn't care what people think of him much and, like, just kind of does stuff. And my mom is, like, the exact opposite of that. And, like, I don't know if that's...
It's probably how they stayed together so long.
Yeah. Probably. Yeah. I mean, they drive each other insane, but I think that's normal a bit. So...
But... Yeah. I don't know if... I I don't know if it's a person who...
I love hearing you stumble through wondering about this. This is fascinating. I'm over here just thinking that I I actually think of it as my job to make my wife out of her mind.
So... Mean... Yeah. I think my dad does too because he does it on purpose a lot, and he does it to me on purpose a lot. And then they do it to me.
Yeah. It's fun. He...
Yeah. I don't know. Was it Monday night? I, like, came home, and I was really tired. And I was...
They were asking me about my day, and I was describing it. And a thing that I didn't really put together until recently is whenever you talk to them and they start joking together, they keep, like, yes and ing each other and, like, building the joke. But I'm sitting there, and I'm like, I've only gotten to 10AM in my description of my day. And, like, you're joking, and you keep talking and joking and making the joke more complex. And I'm so tired.
Like, please please stop.
Oh, it's nice. My wife sometimes says to me, I'll say... She goes, what are you doing? I go, I'm just teasing you. And she goes, what about my personality says that I want to be teased?
And I went, well, nothing so far, but I'm... I I think we're gonna get to the core of it one day. And she's like, we've been together for over thirty years. I don't wanna be teased. And I was like, I know.
But here we are. So I I don't know if I'm gonna tease you anyway. I think it's the only thing keeping her from falling into whatever abyss her personality is dragging her towards, and I assume she's doing the same for me. Do you know what I mean?
Yeah. I think that's probably true. Yeah. It's important to have people around you who will make fun of you.
In a loving way. Yeah. Yeah.
I don't know. There was... I I was talking to someone... One of the other, like, interns at my job, and I was, like, describing the way my friendship works. And he was, like, concerned because, like, a lot of the time, we just kind of make fun of each other in ways that certain people would maybe describe as brutal.
But I think it's fine. And so it's very funny listening to other people react to the way your real... Your relationships work because, like, I think the way we interact with each other helps all of us stay... Like, keep out of the kind of anxiety pit that all of us, I'm sure, would fall into and do fall into. Yeah.
So Let's talk about this diabetes thing. Before you were diagnosed at 18, did you have any health issues?
Not particularly. I did have... Like, and and this was... So I have issues with anxiety, which is the only thing that that I can kinda be like, oh, this is, like, kind of tracks in, like, a health way. And the way that my anxiety and, like, getting diagnosed with diabetes kind of, like, meshed together was, like, very confusing and, like, just odd.
Anxiety, and where she points it17:31
But I also think helped my anxiety in a lot of weird ways, which probably just means that I'm controlling. And so having a thing that I can, like, direct that energy at is, like, steadying to me, which is probably bad in a different way. But that's fine, I guess.
Yeah. Listen. As long as you're standing up and you're not robbing a bank or throwing yourself off a a roof, I think you're fine. You know what I mean? Just Yeah.
Whatever works works. It's it's absolutely... No one's I mean, listen. I don't even know if I told you to build a perfect person. I don't even think we could all agree on what that would mean.
You know? So, like, if you're getting through and you're... Are you happy?
Yeah.
Yeah. This is the most unconvincing, yeah, anyone's ever given me in my life. You're like, yeah. Didn't... Yeah.
I'm okay. Are you dating?
I was, and then that ended, is probably a good thing.
Tell me what they did.
I just think that... I don't know. I've been, like, talking to people about it a fair... Like, my friends about it a fair amount just because, I think during the relationship, I didn't really talk about what was happening in the relationship, which was a mistake, which I'm not gonna make again. But I think that the more I talk to people about it, I think that a lot of what was happening was that I I'm...
I try to be, like, a very understanding person and, like, very compassionate, and I think I'm good at that. But I also think that that might mean that I'm not necessarily great at enforcing, like, my boundaries.
Can I get an example of a thing where you should have stood up and you didn't?
Yeah. Like I don't know. Like, he had a... And this was a red flag that I should have clocked from the beginning, but, like, first relationships and etcetera. When when we started dating, like, he he kind of said something like, oh, I think, like, in our relationship, like, you can make me better at, like, watching shows and stuff, and I can make you better at exercising, which looking at the time, I guess, I was kinda like, that's, like, a nice thing, I guess, to be like, I care about your health.
But, like, now What you I'm
like What do you really... What what do you... Wait. This is ridiculous. So you were gonna bring to him to help him watch television?
It was a strange thing to say. I don't know.
And and he he found a way to call you fat in that same conversation. Is that what just happened?
He wasn't fat because I'm not.
Oh, I know. But what's he saying? I don't care if you're fat or not. I'm z... I'd be...
He's like, hey. You know, we could get you moving, and I'll sit still more often. Was he, like, mister America or mister Canada? Sorry. He is.
Was he, like, all fit and everything?
He is fit and, like, enjoys exercising and etcetera.
There's no way you enjoy that.
Well, yeah, that's what... I don't know. Because I was also... Like, at some point, we had a conversation where I was like... He asked me something like, oh, like, what's...
Like, were talking about exercise, and I was kinda like, the part that I enjoy about exercise is when it's over. Because, like, exercise as much as you should do it, it also hurts and isn't fun all the time. And he was like, the part that I enjoy about exercise is, like, exercising. And I was like, cool. But he, like, said it, there was something wrong with me for not wanting for, like
Is this a high school boyfriend? Did you know? It's a college... It's a person you met
in college.
I mean, university. It's a person you met there. Yeah. Alright. And listen.
I I know this is strange because I'm, like, 35 older than you. But was he, like, in great physical shape and that's part of what you liked about him?
Well, he was, but I didn't care about that.
Really? How... Well, how do you... I I don't understand. How does an electrical engineer end up with a gym boy?
Well, he's also an electrical engineer, so that would be part of it.
What an ass being good at two different sides of the life. Right?
Yeah. I know.
Yeah. So is he applying his, like, focus that he probably has to apply for engineering? He applies it to the working out too. Is he is he one of those people who thinks that there's rules and if you don't follow the rules that he thinks are right, then you're wrong?
Maybe. Maybe.
How long how long were you with him?
Like, three years.
Oh my god. Would you meet him, like, at the at the freshman mixer?
No. Almost. I think it was, like, a year. Well, we'd met each other, and then I think we started dating in second year, at the end of second year or
something like I gotta learn not to judge things so much because I remember... This is a story that's apropos of nothing. But I remember one of Kelly's roommates in college got her MRS degree at the party the first night she moved in. You know the MRS degree. Right?
I don't, actually. It's a missus degree.
Oh. Yeah. Yeah. Sorry. Yeah.
I read
your joke with people. What'd you go to college for? I went to get my MRS. Okay. So now this person still had, like, a a a...
Has had a lovely career and it didn't just, like, go home and sit and, you know, take care of the house. Although, I gotta be honest with you. I wouldn't judge that either one way or the other. I'm just saying it's not what happened. She got her degree, you know, worked in a professional life her whole life.
She's our age now. So... Which is to say she's old. And I just saw her pop up the other day, and I was like, oh, there she is. Still married to that guy, kid, like, you know, an adult and everything.
And how crazy is that you could meet, like, somebody that you'd be married to for thirty years, like, on your first day at college? And at the same time, I'll tell you, it's just a college boyfriend. Who cares?
Yeah.
Do you miss him? No. No. Does he miss you, do you think? Maybe.
He does. Of course, he does. We're boys. As soon as you leave as soon as you leave, we miss you. We're like, ugh, she was so pretty.
What was I doing? I'm so stupid. I shouldn't have said that. Blah blah blah blah blah. It's the same thing.
It'll... He'll be like that till he meets a different girl. We're very easy to distract. So it'll be fun. He'll...
But you don't care, do you?
That he feels that way?
Yeah. That he still might care?
No. Not really at this point.
Good for you. And and is there another boy that we have our eye on? No. Why not?
I don't have time.
Were you just with him because it was, like, he fit into your schedule at some point?
No. No? No. I think the... I...
Wanting different things24:31
Well, I mean, the other thing is that I think that, like, I'm my parents very much don't have the same interests or anything in a lot of ways. And so, like, I was very comfortable being in a relationship where it's like, okay. Like, you kind of go and do your thing, and I go do my thing. And then at the end of the day, we have dinner together and, like, art together. But it...
I think he very much did not want that type of relationship and wanted us to be doing the same thing together fairly consistently.
I'm getting this. I'm getting this. Hold on a second. So you're a little more... I'm gonna use the word cold, but I don't mean cold.
You're a little more, what, surgical? What's the word I'm looking for? We'll figure that out. And he's a little more like... He he felt clingy to you, didn't he?
At least sometimes.
Uh-huh. I get it. Okay. So he just wanted to be squishy and and make you... And stay with you and make a baby and stuff like that.
And you're like, hey. It's cool. You go, like, do a sit up and then come back, and I'll I'll look at your hard belly at the end of the day. And then you can get the hell out of here. Is that how you felt a little bit?
Am I getting That's not how I felt. Alright. Well, how did you feel?
No. I think I'm I'm just very comfortable being like, oh, like, at the end of the day, like, we'll we'll talk about each other's day and, like, laugh laugh together and, like, make dinner together and, like, talk and do the normal life stuff together and relax. And then in the day, we go to our jobs and, like, go do... Like, you go and, like, bike a bunch, and I'll be here in knitting because I like doing that.
Oh, you're like an old lady in training. You just wanted... Yeah. Yeah. Yeah.
Yeah. You wanted your parents' relationship.
I don't know that that's what I want, but, like...
I mean, you're describing it, aren't you?
Like, to certain degrees. I don't know. I feel like there... There's parts of my parents' relationship that I'm like, yeah. Okay.
But there there are other parts where I'm like, I don't know if that's
I gotcha. So were you unwilling to bend to what he was asking for, or was he unwilling to to see the... So I'm trying to figure out if the things you didn't like about him, you voiced to him or if you just let them build up and you resented it. And then he wanted something from you you didn't wanna give and it was... Broke up with him, didn't you?
I... So... Okay. When we broke up, I was like, oh, it was mutual. But now I'm like, wait.
Maybe maybe I broke up with him. Maybe. I don't know. It was... Anyways.
Oh, I gotta stop this diabetes podcasting and do this relationship stuff with younger people. You guys are fascinating. So, like, not only do you live in a a frozen wasteland, I imagine, but also on top of that, you're you're... You live in this era where it's really hard to meet people. Yeah.
And you dip... You you like this kid.
Yeah.
Yeah. You liked him fine because he's not actually your cup of tea. Like, you don't care that he's all, like, Jim Hard and, like... And that he works out all the time. Like, a lot of his personality, you weren't impressed by.
I'm right. Right?
No. I wasn't particularly
Yeah. You don't give yet.
Yeah. I'm like, that's that's good that, like, that's how you feel. But I also... I mean... Yeah.
Like, I don't think that the situation... Because on my side, I guess, I kind of felt like he really wasn't willing to accept, like, who I was and kept trying. And every time I kind of was like, hey. This is who I am. He would very much be like, but, like, what if you weren't that person?
And then I'd, like, try to be that person, and it would not work.
Did he say that, or is that how it felt?
He didn't say that, but that is how it felt.
That's how it felt. So what he wanted, if I'm being... If I'm understanding this, what he wanted was to spend more time with you. And what you wanted was for him to go live his own life and then come back and do the parts of life that you wanted to do with him. You're just not in the same place.
I I hate to oversimplify this. He probably... This kid probably would have graduated and married you, and you're not... You don't want that. That's not what you're looking for.
Yeah. Probably.
Yeah. I mean, it... Yeah. That... That's a
different story. I don't know. Like, I agree with you, but it's also funny because there were time... Like... I mean, really
that noise more while we're recording, please. It's my favorite part of the story.
I will. But, like, really... Because... I don't know. There were times where, like...
I don't know. We had a few... Really... Okay. When I say all of this now, especially to my friends, I am like, oh, we should have broken up, like, way earlier.
But, like, I don't know. There were there were a few times where he said, like... Or there was a specific time where he was kinda like, oh, like, if in, like, the distant future if, like, I would want to be with you when I'm, like, settled, but right now, it feels like we don't want the same life. And I was like, I agree. Yes.
Oh, he was trying to get you to say no. I love you. I'll I'll stay. We'll do it. And you were like, no.
It's okay. You're right. You should go. Yeah. Oh, he probably cried.
Did he cry in front of you? Yeah. Oh, I would have too. I would have cried in front of you. I just want you to know.
I would have been like I would have been like, hey. Like, isn't there a way where we could just kind of fast forward to the part where our wants were the same because I love you so much? And you'd be like, or you could leave. And I'd be like, it's okay. I'll just go.
It's fine. Is that about how it happened? Like Did you cry? Oh my god. You didn't cry, did you?
No. I did.
In front of him or after he left?
No. Like, in front of him and also after he left.
Did you embrace while you were crying?
Yeah.
Oh, jeez. Okay. I'm not... How long ago was this?
Like, eight months ago.
You're gonna think that you better find another guy. Because if you don't find another guy, when that kid goes and finds some girl and he's happy and you get older and think, oh, no. Now I do want that, you're gonna really be pissed.
I don't think I will.
Okay.
Like like... Because I I do understand where you're coming from, but there's also, like, other things in the relationship where, like... I don't know. There were just some things that I...
Can I tell you something? Yeah. Those other things are gonna exist in your next relationship too. Not telling you did the... By the way, I...
I'm not telling you you did the wrong thing. Yeah. No. I'm just telling you, like, this is how this is how all this works. Like, you...
This is a very simple story of your two focuses. We're not lined up on the same timeline. Yeah. But at some point, your... Yours might shift.
And when that happens, I don't want you thinking about him anymore because you're gonna feel regretful then. And there's no real reason to feel regretful. I'm gonna sound cold for a second. There's a lot of people in the world. Do you know what I mean?
Like, I've been married for, like, thirty years. And I'm... And you're not even 30 years old. I was married in '96. When were you born?
O three.
Oh, yeah. Exactly. Okay. So I was married for, like, seven years when you were born. Let me tell you something.
Hope my wife never hears. If I didn't meet her
Good idea to say it on a podcast.
Yeah. If I didn't meet her and I met somebody else and I like that person, I gotta tell you, I'm I'm I'm the kind of guy that doesn't leave you. Like, I'm the kind of guy that hangs around for thirty years and adjusts with you and, like, is happy being happy and all that stuff. Like, I'd probably be married to somebody else for thirty years. I'm happy it's the person I chose and who...
I mean, I I don't know that she chose me back. You know, maybe she got back into a corner. Life is tough, but that's not the point. Like, I'm happy that we're together, and I love how it went, and I think she would tell you the same exact thing. I'm also telling you, it could have worked out with someone else, and she easily could have be...
She could easily be married. Well, not her. Like, she she she... I mean, she'd make somebody crazy and they'd probably kill her. But that's not the point.
Like, I have a real love for her. You know how they say some people love... Like, in a relationship, somebody loves one of the people more than the other person loves back?
Yes.
Yeah. I'm that person in my relationship. I love my wife more than she loves me. It's okay. Then you're comfortable with that, I guess.
Well, what are you gonna do? Yeah. Yeah. Yeah. And this guy, I don't mean to make you sad, he was comfortable with that with you.
I don't... The thing is I don't know because what you're describing...
It's not the same?
Like, I would have been very comfortable. Like, I am very comfortable with just being some... With someone and being happy. Like, I am comfortable with that. It's just there were other things that, like...
I mean, is there something big you're not telling me?
Yeah. Probably. There's a few there's a few things that I'm like, oh, but that wasn't great.
I mean, I could blur this out, but, like, did he did he want you to do something weird? Or, no? Yes? You're saying
you can blur this out?
Or was it something... Did he want you to do something weird? You don't have to say what it was. It's just a yes or no. No.
Okay. Oh, so he wasn't asking you to do something you were uncomfortable with?
Well, no. He was.
But... And this is beyond the hanging out together part. The kid's a freak. Is that what you're telling me? He's a freak?
No. No. No. He's not. Alright.
He's not. I think it's just...
I don't wanna know. I'm way too old. I don't want you to tell me. I just wanna know if you were comfortable or not, like, in your relationship. Like, were you, like...
Was there something else making you uncomfortable? Because we're only going over the parts we're going over.
Yeah. No. I think I think there were other things that were making me uncomfortable. And I think that there were... Like, I guess, I just think that it very much felt person.
Like, it wasn't just like, oh, like, I like you and I want to do, like, these things with you. It was like, I want you to be like this person, and I'm not a person.
Well, then good riddance. Goodbye, loser.
Yeah.
Yeah. That's enough of you. Hold on a second.
Which is, like... I don't know. If he wants that person, that's fine. But I'm not that person. And it just felt like he also wasn't willing to be like, oh, you're, like, a not that person and are not willing to Yeah.
Okay. Well, there's not enough flexibility on either side, by the way, and whatever. So you did the right thing. So he's gone. But what do you mean there's not enough time?
You're gonna be alone... Were you gonna be alone for three years before you date again?
Did I say that? Oh, no. I don't have... I literally do not have... Yeah.
I... Like... So right now, I'm working a full time job, and I also have one class. And I also am in, like, an engineering club, and I have friends.
These friends
So I don't have time.
These friends using up your time. It's terrible. Well, listen. You do what you do think is right. Okay?
And be as comfortable as you can be. This boy was... Were you dating him when you got diagnosed? You were not. Right?
Okay. How do you how do you, bring up the diabetes when you're dating?
He knew before we started dating.
Is he stalking you? Is it what they call a
creeper? No. We were in the same, like, kind of social circle, so he, like, knew me Okay. Before we started dating.
And he approached you or you approached him initially?
He approached me.
Yeah. Okay. And so, obviously, that wasn't a problem out for him, but was it a problem for you? Was it difficult to explain, to share? Did you feel comfortable?
Yeah. I felt like... Yeah. No. It was...
That part of everything was fine. I think that there are things that come up where it's like, oh, I'm... Like, my blood sugar is low and, like, we're supposed to be on a hike. Like, there's, like, things that come up that it's like, I'm really frustrated, and then you both get frustrated about it because it's a frustrating situation. But, like, generally, things were...
On that side, things were, like, fine.
You didn't feel uncomfortable sharing or having him know things. Okay. Was he was he valuable in a panic situation? Did he know what to do or how to help?
Yeah. I think so, generally.
Okay. Oh, awesome. So the... Kind of a nonissue, the diabetes part. Yeah.
How do you manage? Do have a pump? Or...
Yeah. So I... Yeah. I have... I'm on Omnipod, and then I'm using Android APS.
Nice. Yeah. That's awesome. I actually just got an email. I'm gonna interview the guys who've been working on Trio.
Oh, cool.
Yeah. Yeah. How did you find that so quickly? Oh, well, you're an engineer. That's how you found it so quickly.
Honestly, a lot of it was through the podcast and then also, like, looking through Facebook groups. And then... So I actually didn't... And I have, like, mixed feelings about this kind of, but I actually didn't, set up, Android APS myself. I'm doing it through, like, BC diabetes.
Setting up the algorithm38:12
Oh, sure. Yeah. Yeah. Oh, I heard I heard they were help... They were doing that with people.
Yeah. There's a number of institutions, by the way, now that if you go to and just tell them you want a DIY setup, they'll help you with it.
Oh, cool. Yeah. That's in
that's in the America and everything over here too. Nice. Yeah. Yeah. Yeah.
I'm hearing about that from people. I I always just imagine, like, you're Canada. They must just, like, I don't know, like, strap a seal to you and then just put a line from the seal's pancreas to you or something. I don't know how you guys do anything up there. It's ridiculous.
Are there city... You have... Are your streets paved?
Yes. They are.
Wait. With asphalt?
Yeah.
Wow. It's fascinating. You like this podcast?
You say that like you're surprised.
I am. I love when younger people like the podcast. I
think... Interesting.
Yeah. Yeah. Yeah. It's it's a thing I don't imagine what I'm thinking about, whatever it is I'm thinking about.
Yeah. No. I, I think the part that I appreciate the most, I think, is, like, just listening to, like, people talk. I find people very interesting is basically where I come into that. And, like, I I listen to podcasts generally.
So...
That's awesome. No. I think that any person in their twenties who likes me is gonna have a very successful adult life. Mhmm. I think I'm an indicator of, like, future success.
What do you think of that?
I mean, I think it's a bit narcissistic. But... Yeah. Teeny little bit.
No. No. I I do. I think you're seeing you're seeing... Listen.
I didn't know why you had to use that word right away. I could've said I'm not kidding. You could've said grandiose or something. Yeah. You know?
Trying to make feel like a little, like, more artistic. No. I just... I've I've had a number of conversations this year, actually, with women about your age. And I just...
I've been, like, kinda stunned by how many of you have reached out and been like, I listen to this all the time, and I just wanna be on. So I'm... I think it's awesome. I'm really kinda happy about it. I can't just...
It can't be all those old bags listening all the time. You know what I mean? There's, like, people in their thirties and forties. Oh my god. So old.
They're almost dead. You know? Can imagine being 38? Ugh. Right?
That sounds terrible.
What is 38? Not young, not old? You know? What is it even? At least I'm properly old.
But, you know you know, I I heard somebody say the other day, they said 70 is the new 60, but they were talking to their father who was in his eighties and he said, well, listen. 80 is still 80. Season sucks. It's horrible. Yeah.
Yeah. Yeah. No. I don't feel that's... I don't feel...
Do I come off old while you're listening? No. You... I don't. Like, so if you...
Go ahead.
Yeah. Like, as someone who is not... My... I should say seventies and then 60 to my dad because he's, like, 74. No.
I don't remember.
Wait. Tell him with a GLP 70 is the new 55. If he wants to get involved with a little peptide and stuff like that.
Yeah. No. You don't particularly, I don't think.
I don't skew old.
No. But, also, I feel like asking me is maybe not the best person to ask because, like, my... Like, as an only child and as someone with, like, older parents, I have spent a fair amount of time with people who are, like, older. So, like, I might not be the person to ask.
Yeah. You're basically 38 now is what you're telling me.
I mean, probably.
Yeah. Yeah. Yeah. Okay. So interesting.
I I I love I love hearing about people's lives too. Okay. So you're using Android. You started on Android APS? That was, your first...
No. You started on Omnipod?
Like like, when I got diagnosed?
Yeah. Well, your first pump. Do you live in one of those provinces that lets you have a pump, or did they try to put you on regular an Miles per hour?
No. They didn't do that. I started with MDI for, like, a year. And then and then I went on a pump, I started with Omnipod.
Okay. Alright. And then you made a decision to to look into this because of the podcast?
Yeah.
Yeah. Look at me. Have an influence over people. I... Maybe I'm an influencer.
Crazy. No. It's not fun. Oh, what a fun thing. Okay.
Alright. So the diabetes part, blah blah blah. Yeah. Yeah. Yeah.
Yeah. It sounds like you're fine with the diabetes. What I wanna know about in your note is your anxiety slash needle phobia.
Mhmm.
Is it day one first needle? You're like, hell no. Get away from me, or did it develop over time?
I think it was always... Like, I don't remember ever not having it. And it's funny because my dad actually... He kind of had... He describes it as, like, a physiological issue, which...
Okay. Sure. And I think that that's probably what it is because I faint. Like, before I get the needle, I will faint.
What you... I mean, you won't now. You were MDI, though?
Well... Okay. So that's the thing where, like... This... Yeah.
So my diagnosis story, honestly, I think it's hilarious. I don't think anyone else thinks it's funny, but I think it's very funny.
It's possible I will. So let's find out.
Well, that's what I... I was like, Scott will probably think this is funny to some degree. But, basically... So... And this is how, like, the anxiety ties in in a weird way.
I... Part of the reason I decided to go to the university I'm going to was because it was not in my, like, home city. And so I knew that that was going to, like, skyrocket my anxiety in, like, an insane way. And I wanted that because I wanted to, like, beat the anxiety, which is not which is not exactly how that works, but, like, kind of how that works because I want to expose myself to it and be like, and I didn't die so I can do this again. But the issue is that the things that happen when I get anxious like that are that I get incredibly nauseous.
The semester it started going wrong44:31
My vision gets, like, kinda blurry. My throat gets really dry. And then, like, I just get, like, shaky and stuff, which are all, like, symptoms of DKA also. So I get to university, and I, like, feel like trash. And so I'm like, okay.
So everything's going exactly according to plan. And I'm, like, not finishing my meals at all. Like, my throat feels dry a fair amount of the time. And, like, I started to, like, not being able to see, like, the... Like, my professor's writing really clearly.
And I was like, well, this professor's writing is trash, though. So that's, like, fine. Normal. I probably just need new prescription for glasses. That happens.
And then, like, things kind of kept happening that were, like, weird. Like, I I started just... Like, the the one that I noticed was that the skin on my hands just started, like, flaking off. Like, it wasn't it wasn't a rash. It didn't hurt.
It just started fully flaking off. And I was like, that's weird. I would have expected my skin to be better now that I'm, like, not in... Like, Alberta is a really dry province, and now I'm not there. So, hypothetically, it should be better.
Yeah. But that was weird. And then Hey.
How smart are you? Are you McGill or something? Where are you... You don't have to tell me, I guess.
I'm not not at McGill.
Okay. Alright. The...
Yeah. But then I, like... So I don't know. There were, like, weird things that were happening, and they, like, kept getting worse. And, like, my throat started getting dry.
Like, my tongue felt like sandpaper and started, like, sticking to the top of my my mouth. And I, like, started talking with a lisp, and I was like, that's weird. But, like, I don't know. At that... I think at that point, I was, like, so sick that I could not think properly.
And so in my head, was like, well, I'm just like
Did part
I'm, like, anxious.
Yeah. Did part of you think, well, this is it. I put myself in this highly stressful situation, and this is what's happening, but I'm not dying. So I'm gonna get through it. Is that how it was feeling?
Yeah. I think so. And I also think that at that point... Because, like, it kind of... At the end of September, I think I started feeling, like, a bit better, and I was able to, like, eat food...
More food and stuff like that. And then it kinda started getting worse, but that was also when, like, midterm started happening. Mhmm.
So I
was like, okay. So I'm, like, getting burnt out because of, like, midterms and stuff like that, which makes sense. And then I think at that point, I was, like like, too sick to be able to have, like, new thoughts, if that makes any sense. Like, in my head, I was like, I'm anxious, and that was, like, the track that my brain was able to work along. So...
Yeah. And then, like, I I don't know. I started, like, dreaming about water, which was a bad sign because of how, like, dehydrated I was, I'm pretty sure. Like, I'd wake up and be like, I was dreaming of the most beautiful waterfall, and it looked so yummy. And so that was bad.
Dreaming about water47:45
But then I... There was, like, one day where I went to the cafeteria and I made myself, like, a little yogurt parfait. And then I was kinda like, oh, I like... I think I'm starting to, like, have a panic attack, which, you know, happens sometimes. And then I, like, started start...
Excuse me. I started, like, walking to the cashier, and then I was like, oh, this one's, like, bad. This is not good. And, like like, my... When I have panic attacks, like, things...
Like, my vision just starts going weird, and there's, like, colors and stuff like that. Yeah. And so then I was like, this is not good. And and I think the... I I think I said something distressing, like, I'm having a panic attack or something like that to the cashier because I, like, put the the yogurt parfait down, and the cashier looked concerned.
And then my vision just, like, went away. Like, it was just gone. Wow. And I was like, oh, that's new. Okay.
Fun wrinkle.
Yeah. I was like, okay. Cool. So then I, like, put my arm out and, like, walked towards where I knew there was chairs and then just, like, found one and collapsed into it essentially. And then I was, like, looking up, and my vision started to clear.
And everything still looked weird, but I could, like, see you again. And the cashier looked worried, and another person also looked worried. And they were like, we're gonna call, like, campus security because they have, like, medical training to some degree or whatever.
Yeah. Sure.
Yeah. And then... So they, like, went away. And then this guy... Like, this guy just suddenly came into my view, just above me and was like, hello.
And I was like, hi. And he was, like, sitting next to where I had collapsed essentially. And he was like, are you okay? And I was like, not really. I think I'm, like, having a panic attack.
And he was like, oh, that's not good. And I was like, yeah. And he he was just like, can I, like, help or something? And I was like, can you just, like, talk? And so he was like, oh, yeah.
I'm, an international student. I, like, love it here. It's so nice. There's, like, these different international student communities and, like, just started talking, which was helpful, but also really funny. And then eventually, he was like, okay.
Like, I need to, like, go now. I hope you feel better. And I was like, thank you. So he left, and campus security got there. And I was like, I'm pretty sure...
Like, I had a panic attack. I don't know what happens. It sucks, but it happens. So they were like, okay. Well, like, if you've had this happen before, then, like, I guess, like, we can take you back to, like, your dorm and stuff if you're not doing okay.
Mhmm. So they, like, drove me back to my dorm and, like, carried my bag up to my dorm room for me. And they were just like... The guy was like, you really need to, like, take it easy. Like, it's okay.
Everything will be fine. Like, you don't need to stress yourself out this much. Like, it'll... Just trying to be, like, comforting and stuff. And I was like, thank you.
And then they left. And then I think I had some of the yogurt parfait, and then I threw up, like, immediately. And I was like, that's not great. But I have a lab to go to. So I went to my
Jeez.
At my lab, I was, like, not doing okay, like, visibly. I was, like, not alright. And, like, one of my partners was like, are you okay? And I was like, no. I think I'm, like, having panic attacks and stuff like that.
And he was like, oh, no. And the rest of my group was, like, concerned. And then the TA came over, and he was like, if you want to leave and your group is okay with it, you can go. Like, it's fine. Can go and, like, con...
Like, you don't seem like you're okay right now.
Yeah.
And I'm like, okay. Like, Are you guys okay with that? And they were all just like, yes.
You... We would love it if you left. We...
I was like, please.
Was this... I mean, obviously, this is DKA. Right? Yeah. Yeah.
But did it really mimic your panic attack, or was that the only thing that you could have managed that you could imagine was happening?
Yeah. It did.
It did mimic it. Okay.
Yeah.
Alright.
Like, the the losing my vision part, not so much, but the rest of it was similar.
Very similar. Jeez. How often do they happen?
Not often, which is also, like
But you... Yeah. But you really thought, like, going away to school brought this on.
Yeah.
Okay. Do you... By the way, do you find school taxing for your anxiety after a couple of years? Like, did your plan actually work out? Did your anxiety raise and you over came it, or is that not how it even played out?
Yeah. I think it did actually. Like, I do think it helped. And I think that I am... Like, I'm a lot better at being like this.
Like, I feel terrible right now, but, like, this will pass. Like, I can get through this, which I think is more important, frankly.
Mhmm. Do you ever think of taking, like, an anxiety medication?
Yeah. I've thought about it. But... I don't know. I I kind of have mixed feelings about that too.
I I don't know. How come?
Because... Like, it doesn't happen often enough that I would really be like, oh, I like... Like, I need this, like, constantly. And I also think that I think for certain people, obviously, I think medication is, like, incredibly important. But I also think, like, in my situation, I feel like I really just need to, like, lower the threshold of what can cause anxiety, which you do by exposing yourself to it.
Like, really, I was trying to do exposure therapy on myself, essentially.
Is that a thing that's been studied, or is that a thing you came up with on your own?
That's the thing that, like, that has been studied.
Okay. So you're just gonna just, you know, stand in the cold so you're not cold anymore?
Yeah. Effectively.
K. Alright. That's fine with me. At what point do we figure out that this is not anxiety and you end up in a medical facility?
So... Yeah. So I go to leave my lab, and one of my lab partners was like, do you wanna hug? And I was like, yeah. He hugged me.
So it was nice. And then I went back to my dorm and basically just, like, collapsed onto the floor and was just, like like, just dead tired and was like, I've... I'm exhausted. And at this point, I was still like, this is like like, I'm burnt out from, like, exams and etcetera. Like, there's a lot of stuff going on.
So I was just kind of, like, lying there for, like, the rest of the day. And I think I called in the in the evenings. I would go to, like, shower because it was the only thing that made me, like, warm because I had no body fat left, I think. So I would just kind of, like, lie in the shower in the hot water and, like, be warm. And so, like, that evening, I called a helpline and was like, I'm, like, having...
Like, this is a problem. I think I, like, need more help than this, essentially.
Did you ever think to call your parents?
I did call my parents and, like, tell them about this. But I think with them, I kept being, like like, I'm anxious. And, like, they couldn't see me. Right? Like, if they saw me, I think they would immediately be like, you're going to the hospital now.
Because, like, it wasn't... Because I was also... Like, I was tiny
at that point. Like, I had It's still hard to tell. Like, I'll tell you that when when Arden was in late school and she first started using GLP meds as an example, like Mhmm. We didn't have it, like, like, dosed correctly at first. And she lost, like, weight that she shouldn't have lost, But you couldn't tell.
Like like... Because you'd talk to her on FaceTime or, like, she'd send a picture every once in while. Like, it just never... Like, it just didn't look different. It wasn't until, like, one time she sent a picture.
I got on the phone with her. Was like, hey. You know, you gotta eat more. And she's like she's like, what? I was like, you're thin.
And, like like, more so than you should be. You know? And she's like, yeah. Like, a lot of my clothes don't fit. And it's funny how, like, it...
None of that, like, not it never... I mean, I've been making this podcast a long time. It's funny how many things to an outsider or to an observer would... You'd be like, well, duh. Like, it's obvious, you know, but it's not obvious when it's happening to you for some reason.
You you know? Yeah. So she's, by the way, fine now. Like, we just... We figured out how to dose it better.
But, like, but I can see where... You know, even if your parents could see you, you don't know. Like, you just don't... Like, we we write a lot of reasons in our heads why things are happening. I mean, look at you.
You're wandering around all day at school dying, and you're like, oh, it's probably something else.
Yeah. Yeah. I do I do think they... Because I went home for Thanksgiving, and my dad at some point did, like, poke my hip, and he was like, you're really skinny. But I think, like...
“You're really skinny”57:03
I don't know. I was kinda like... Yeah. But I was also like... But, like, I'm not eating as much because I'm anxious, which I think is why I was like, well, this, like, isn't great, but, like, there's also an explanation.
And the extent to which I had lost weight was, like, it was way more than just not eating as much. But, like, again, it's, like, it's hard to tell. Right?
Also, cultures move that way a little bit right now too.
Yeah.
Yeah. Like, it's just... I I mean, I don't know, like, what the young people are calling it, but I've heard people say, like, oh, you know, skinny culture is in right now. Yeah. So, like, you know...
So I don't know. But he pokes you in the hip and goes, you look skinny. You were probably like, oh, thank you. Thank you. Appreciate you noticing.
You know, like, it's I...
Yeah. It's funny because I... Yeah. I didn't feel like that. It...
It's interesting the way that my... Like, I think the relationship with my body and the way... Because not eating makes me anxious, like... Or because anxiety makes me not eat, like, I do... I really don't feel like that about being skinny.
Like, I would rather not be skinny.
So so so then when he pokes you, were you like, I am thin. I wonder what's wrong? And then you just go, well, I haven't been eating because I've been anxious.
Yeah. Essentially. Okay.
And I'll just sort of,
like Yeah.
Like like, kind of falls together like that for you. Yeah. Exactly. Okay. Okay.
Sorry. I didn't mean to keep you. So I'm sorry. You call the helpline. There's a...
Canada's fantastic. There's a helpline? What was the helpline?
Well, there's, yeah, there's, like, a... Like, it's just like a mental health, like, helpline, Okay. Yeah. Because I thought that I I didn't think that it was a medical thing still. I thought I was, like, losing my mind.
And so I, like, called them, and I was like... And they were like, k. Well, we can, like, get you set up with a therapist. And then the lady was also like, but, like, since you're, like, not... You're not eating and you've been throwing up and, like, it's probably anxiety, you should probably drink Gatorade because you're probably losing a lot of electrolytes, which is true.
But, also, Gatorade has, like, sugar in it. So I asked one of the people in my dorm if they could get me Gatorade, and she did. And, like, when she I talked to her about it afterwards, and she later said, like, when I saw you, like, I think you're the sickest person I'd ever seen. Like, you looked awful, which I'm not surprised by. Of course, I did.
But, yeah, she, like, got me Gatorade. And so the next day, I was basically, like, just lying on the floor still. And, like, I was
Oh god.
I would not I would not describe it as falling asleep. I was, like, falling in and out of consciousness, like, all day, essentially.
Yeah.
And I would, like, I was, like, lying on the floor, and I would, like, wake up occasionally and be like, I don't remember starting this episode of My Little Pony and then, like, fall back into the abyss. And then eventually, like, at the end the day, I went to, like, shower again. And I was just, like, lying there, and then I got out of the shower. And I was, like, lying on the floor, and I was... And then I realized, like, oh, I'm physically too weak to put lotion on.
And at that point, I was like, help?
Yes. This is And
so I, like, called for help, and the people in my dorm, like, came over and were just like, can you, like, open the door to this, like, shower stall and stuff? And so I did. And they, like, got me, like, blankets and stuff. And then someone called an ambulance and someone called campus security. And I think the paramedics got there and were just like, that's bad.
An ambulance, and campus security1:00:40
And took me to the hospital immediately, and they just... And then once I got to the hospital, like, one of the doctors was like, we believe you have type one diabetes. I was like, what? How close
are you to being someone's story when they were like, oh, when I... Back when I was in college, this girl I knew died? Like, do... Were
you pretty close.
Yeah. Jesus.
Yeah. No. I was really sick. It was it was not great.
Also Yeah. Don't count on children. I mean, you're the sickest person I've ever seen. Here's a Gatorade. Awesome.
I mean,
I need more out of you than that. By the way, not her fault. But my point is is that, like, these these aren't the people to be surrounding yourself with when you really need help because they don't know what the hell they're doing either. They only been there for three months. You know what I mean?
Trying to figure out where they found.
Yeah. I think it's also, like, no one... I think the other part that's tricky is, like, no one, like, knew me. Like, I didn't know I
had one.
Yeah. So, like, it's not like anyone is even comfortable enough to look at me and be like, are you okay? Like, that's just not a conversation I think anyone would've had with me because they didn't know me well
enough. Sense. It all makes sense. So you, the parents come. Right?
Yeah.
Yeah.
Ironically, they were supposed to come out, like, the next night or something. Like, they already had their flights booked. So, like, that was convenient. But, yeah, I like... Because when I got to the hospital, the only things they had on me were my phone and my keys because I had been found in the shower, essentially.
Yeah.
So, like, I didn't even have my glasses with me, which was awkward. But I was like, my mom had just been to, like, a, like, a movie or something. And so she was texting me, and she was like, oh, like, the movie was great and stuff. It was super awesome. I I...
We're really excited to see you, like, tomorrow or whatever. And it was midnight when I actually got to the hospital early one morning or something like that. And so, like, I can't see because I don't have my glasses. So I'm, like, in the hospital bed, like, piping. And I'm just like, that's great, mom.
I'm in the hospital right now. They say,
I'm gonna
go to my beanies.
What movie? That's lovely. Yeah. I know. It's...
I wanna say, in fairness to your mom and every parent whose child is away at school, it's so hard to stay connected to your kid. You find yourself, like, texting them, like, the most random things just hoping to, like, sparrow tiny little conversation. I can remember there was a time when I'd be excited if I texted something to my son and he put a heart on it. Like, like, I... I'll tell you the nicest thing Apple's done for parents is that they move the heart to the left of the thumbs up because we all pretend that our kids are hearting things when they're really just picking the first choice that's...
That pops up when they touch something.
Yeah. No. I thought it was I thought it was very lovely too for her to be like, oh, like, had such a good time. I think I was just... Like, especially after the fact, I was like, that's kind of funny.
The... Like, don't know. Just the horror of being like, oh, I've texted you about this movie. And the next day being like, hey. So I'm in the hospital right now.
Glad the movie was good. That's great. I'm in the hospital.
Yeah. Stuff's upside down. Did... So they they come obviously and and check on you. How long are you in the hospital for?
I think I was in the hospital for, like, five days or something like that, but I was also... I was in the ICU for, like, a day. And then I was moved to, like, medical overflow because, like, it co... It was, like, kind of the end of COVID, and so they didn't... They still didn't have, like,
the capacity for Okay.
People and stuff.
Jeez. My god. And then what's the what's the care like in the hospital? Like, is it is it something you're paying attention to, or is it something you kinda put on your parents to figure out?
No. I was paying attention. Because, like, they... The diabetes educator I had, she was actually she actually has type one, and so she was really good about, like, explaining things to me. And I think she was...
A diabetes educator who had it too1:04:48
Like, my parents didn't really hear a lot of her explanations because they weren't there yet.
Okay.
So... Yeah. No. It was very much like, oh, this is, like, on me. On you.
And at that point, honestly, like, the the speed at which I felt better was really insane Because, like, going from, like, oh, I'm dying to suddenly... Like, I remember... I I thought that I was having lows all the time, but... Because I, like, felt, like, kind of lightheaded a bit. Mhmm.
But later, what I realized was happening was, like, I just wasn't in pain anymore. So, like, moving felt so different compared to what it had felt like for, like, like, a month or two.
Yeah. Not dying feels better than dying is what you're saying.
Yeah. Essentially. And it's like, it is crazy how quickly... Like, once you start getting insulin, how quickly you just are better.
Yeah.
Like, it's very strange.
That's pretty awesome. I gotcha. Okay. Do they go right home? Like, I'm I'm...
Like, do they bring you home? Does that cause a gap in in school? Or, like, how do you just, like, get... Come out of the hospital and go back at it? Like, how does that all work?
Yeah. In the hospital, my dad was like, if you wanna, like, take a break from school or whatever, you can. And I was like, no. I I basically just went back, like, kind of immediately once I got out of the hospital. I think I, like, I kind of took a day off to, like, try to sort out, like, things and, like, try to figure out...
Talk to my professors and stuff and figure out, like, assignments and labs I'd missed. But, like, I was basically back
Right back at it. Immediately. And was that a good idea, like, retrospectively?
I think so. Like... Because I think that if I had gone home, I was just... Like, that had never occurred to me. Like, even when I was in the hospital, I had never thought about, like, taking a break from school or anything.
Because I think that I was like, what am I gonna do? Like, be at home and have type one diabetes? Like, that doesn't sound really helpful at all to me. Like, I'm I'm sure for some people, it would be helpful. But for me, I was like, I don't I don't see the point in in doing this.
Like
So... But... So you just applied your actual personality to the whole thing. Just like, I'm just gonna keep going. I'm gonna take care of this.
Like, a little business as usual, that kind of thing.
Yeah. I guess.
Yeah. It's... I mean, it sounds like it to me. Of course, I don't know you, but I am trying to listen. Okay.
So it doesn't really get in the way of school. You meet the boy. You're moving forward. What's it been like being in college with diabetes? Has it impeded you?
Has it been a value in some ways? Like, what... What's your experience been like?
I think the most annoying thing has been... And this is less of a problem now because of, Android APS. But, like, the sleep was an issue because, like, when you're trying to... When you don't have, like... I think that I honeymooned pretty hard for a while, and I also think it primarily affected my basal rate.
Honeymooning, and basal1:08:04
Like, I never my... It it always felt like the... My boluses were not in an exact ratio to, like, what my basal was. Because at some point, like, my basal insulin was, like, 0.25 an hour Okay. Which is, like, nothing.
I think it was even lower at certain points. So... But then, like, my boluses were, like, I could take, like, five units, and that would be sometimes not enough for what I was eating Okay. And stuff. So, like, having that, like, imbalance, if...
Even if I have had pretty close to the correct amount of insulin, like, if you go to sleep and there's still, like, 0.25 in your body that, like, shouldn't necessarily be there, that's, like, all of my basal rate. So, like, I just would get a lot of lows at night because of that, I think.
Yeah. So you weren't sleeping much.
Yeah. Which I think was really the biggest problem. Other than that, like... I don't know. There's definitely been, like, day to day stuff that's been frustrating, but I I feel like, generally, it hasn't it hasn't really made it that much more difficult to be in school.
Hasn't changed, relationships. It hasn't changed the things that you're trying to do, the hours you spend working. It's just, what, all a little more difficult because of having to plan?
Yeah. I think so.
Okay. It's interesting. It's... So because, I mean, you know, kids leave for school every day. Parents worry.
You know, I just interviewed a lady yesterday who told me a, you know, a terrible story about a friend of hers, kid in school. And does it worry you? Like, are you ever worried that somebody's not there to help you if you need help? Have you ever needed help?
There may be some situations where help would have been good, but honestly, like, not not hugely. I also think that, like, my mom has... She can see my blood sugar, and then I have a friend who also can see my blood sugar. So, like, there are people who are aware of it and, like, keeping track of it to some degree.
Are they local to you or able to get help to you if you were to need it?
Yeah. My friend my friend is. And my mom my mom has her alarm set, like, slightly higher than he does, so she'll, like, notice more quickly and be able to, like, reach out more quickly. So, yeah, there's, like, there's people who can help
Okay. Me. So how often would you say your mom contacts you and it says, you okay?
Like, maybe once a week. I mean, I don't know. Like, it... You know, like, it it varies, but, like, once a week maybe.
Okay. Yeah. It sounds it sounds all pretty good. You, when you come home, do you drive home? Do you take a bus?
Do you... Like, how often do you make it back home?
I fly. Recently, I haven't made it back home as much because I've been, like, working for the past year, so the brakes haven't looked exactly the same.
I see. But I... I'm just super excited to hear that Canada has planes. I think that's fantastic. Not me, really.
You guys are coming right along. Uh-huh. Yeah. Yeah. How's the politics out there?
You guys hate us at this point, or are you good?
Yes. It's
complicated. It's kinda complicated. Is it is it worse? Like, are you hearing, like, are you... Is it come...
Like, are you coming for us? I just wanna know
No.
You guys aren't gonna, like, descend on us with your pocket knives and your, like, sled dogs and... Right? Because I can't I can't do... I don't I don't have time to fight. I just don't...
My life is I'm busy. It's just what
I was saying.... Most of us are also busy, so I think you're good on that front.
So no invasion, you're saying? No. Okay. I mean, I can promise you we're not coming up there. Everyone here is just, like, having too good of a time.
There's no way they would leave, to go do this thing. Can you imagine an incursion into Canada? So cold.
Well, we've tried before. It hasn't worked.
Also, you'd hit us with those hockey sticks for sure. And I've seen... Like, I don't wanna get two minutes for slashing. You know what I mean? Just do even watch hockey?
There's no way you even watch sports.
I don't.
I know. The... I I could tell immediately you're not a sports person.
Yeah.
Yeah. That's fine. I'm good with that. But but but I... Alright.
The needle phobia, explained1:12:43
I wanna double back to the needle phobia thing because I have to admit to not understanding completely. You did MDI for a while, but you can pass out from a needle. So you had to square that circle for me.
So I I actually was one of the people who... You did an episode on neophobia with Erica, I think. I was one of the people who sent in right when COVID happened. I was terrified of getting the needles, and my mom took me to a therapist who did EMDR on me, which I think helped. And I also think, like, she gave me some advice, not just the EMDR, but, like, she gave me some advice that's basically if you use music and you also close your eyes, your brain can only focus on so many senses at one time.
So if you're clogging up, like, the hearing thing and you're not seeing things as well, then, like, your brain can't focus on, like, other things as well. Mhmm. So... And then also, one of the things that freaked me out a lot was when... You know when they do the little, like, wipe thing on your arm before they give you the needle?
I... That part, like, scared the hell out of me because I think it was just like, oh, like, I'm under this person's control in some weird way. So what I do is I'm like, I need to be sitting up when you do the little wipe on my arm. And then when you're actually... When that's done, I'll lie down, and then you stab me, and then we're good.
Because I think it's just a way for me to put control over the situation to some degree, which I think helps me.
Was your mom injecting you every time you needed an injection?
No. So that's the other thing is I... Like, for some reason, like, the the needles for EMDR... MDI are just, like... They're so small that it wasn't really that much of a problem, frankly.
I mainly injected into my, like, legs at first because injecting into my stomach scared me. But the first time, like... Because my diabetes educator, she... I told her, like, I'm really scared of needles. And she was like, okay.
Well, let's just, like, sit together and you can just, like like, basically stab yourself with the needle for the first time, like, with me. And I did. And I think I got lucky, I just, like, I didn't hit one of my nerves because I didn't feel it. Mhmm. And I kinda hit it.
And it was like
When you feel it, is it like... Is it this overexaggerated pain that you think to yourself, like, this can't be real, or is it more just panic?
Like, when I get a needle and I'm scared?
Yeah.
Yeah. It's not... Like, again, I don't know why I'm so scared of it, which is part of what's frustrating because I don't think the pain scares me. Like, because I don't think it's that painful. Also, like, after...
I find that, like, after I get the needle, it, like, hurts. Like, your arm hurts, but, like, that part doesn't scare me either. So, like
Yeah. No. I mean, Arden describes it the same way. Like, she's, like, kinda... I...
But but she'll also talk about, like like, a... It feels like a lightning bolt shoots through her when she gets stuck with the needle.
Interesting. Yeah. Yeah. That doesn't happen to me.
Also, the other night, I just shared this another episode, so I feel weird saying it again, but pretty appropriate. She had a little bug bite on her knee, and she had to give herself a GLP injection. And I just scratched the bug bite and, like, aggressively scratched the bug bite when she did the the injection. She said it was the easiest injection she's ever done. Yeah.
Like Yeah.
That makes sense.
Just bringing another, like like, sensory thing into it. You're saying, though, music also helps?
Yeah.
Interesting. So you overload yourself with input such that you kinda can't worry about the needle or that it... I don't understand what's it do for you.
Yeah. I think that's what it is. Like, you're just... Your brain has to focus on a different thing because it's getting a different input. But, like, this is only a...
For some reason, this is only a problem for me when I get, like, vaccines that are, like, going into my arm. Because it's also, like, those are those are going into, like, your muscle versus needle... Insulin injections generally just go into, like, the subcutaneous tissue, which is, like, a very... Like, that's not as invasive. Sure.
So I think it just scares me less for some reason.
But in the end, this is your anxiety, you think?
Yeah.
Yeah. And has has has being exposed to needles made it better or no?
I think so. I I think I also just it's tricky because, like, I'm like, is it me being exposed to needles more, or is it me now understanding, like, my process for how to make it not as scary? Mhmm. Because those kind of happen at the same time.
Yeah. We're getting we're getting through it here. It's like a slow process. It's it's... I think anything with anxiety is is really fascinating.
Like, it's just a thing that doesn't kind of really exist having a physical impact on you. It's it's fascinating. You know? And then to your point, like, there's ways to kinda press through hopefully. And if not, hopefully, you can get help somewhere else and, you know, if it's medicine or if it's therapy or whatever it is.
I mean, because it's no it's no less real to you. Like, I I do not doubt how much pain Arden feels. Yeah. Yeah. Sucks.
Really does.
Yeah. I think that's also kind of the frustrating thing with, like, talking to people about it because it's like people can give you advice of, well, like, it's not it's not real, and you should just, like, sit in it. But it's really hard to take that advice when it's like, hey. But, like, have you actually felt this? Because this feels like actual physical pain, and it feels like you're not really considering that.
Of course. Even even if they are.
Well, they're not because they don't know... And and by the way, everything's like that. However you feel is how you feel. There's there's no way to... You know what I mean?
Like, you know? Yeah. You can't just shut off. If you could just shut it off, then the boy wouldn't have asked to be around you so much and and everything would be fine still. Or you would or you would have, like, you know, something he said to you, you would have been like, well, out of sight, out of mind, I won't think about that again.
It won't be a problem. It's just not how things work. So it's easy to judge other people when you don't live in their situation. And Yeah. This this is one of the things.
Like, it is really difficult if you're not an anxious... Listen. I'm not an anxious person, but I talk to a lot of anxious people. And I have tried really hard to put myself in a position to understand as best I can what they're going through. And I I don't see a way around it.
Like, sometimes the only way around is through is definitely a right thing. And if you can't get through it, then you're gonna need some assistance somewhere. Yeah. Yeah. That sucks.
Have you... Are are there people in your family are anxious? Your mom, your dad?
My dad definitely isn't. I feel like my mom is, but she talks to me like she's not... Like, I don't think that she gets it to the extent that I do. I don't think.
Maybe she just had a more practice hiding it.
Yeah. Maybe. I don't know.
Extended family, aunts, uncles, cousins, nephews, etcetera.
Not that I've heard of.
Yeah. They don't... People don't talk about that stuff. How about other autoimmune issues in your extended family?
Yeah. My dad actually has RA. He got diagnosed two years ago or something like that. Mhmm. And then my grandmother on my mom's side had RA two, and then there's, like...
Autoimmunity in the family1:20:35
There... There's been a few things.
Okay. Anything that they were using medication for, injectables, or anything like that that you know of? Did your dad look into that?
Yeah. My dad my dad's taking some things. Some That sounds like been helping. I can't remember what. But...
Yeah. How old are your parents?
My dad is 74 or something like that. My mom's 64, 63.
Wait. Your dad's 74. Your mom's 64. How old are you?
23.
23. So you're... So your mom had you when she was almost 40.
Yeah.
Your dad was 50. Yeah. And this is their first marriage each? Yeah. Interesting.
Are they both academics?
Not academics, really. Professionals? Yeah. Yeah.
Okay. Do they... Or do they both have your, like... Are you personality wise the same? I'm trying to figure out how somebody gets that late in life, but then gets married and is like, let's have a baby.
Like, that's a... That's pretty old to have that decision be made.
Yeah. I don't know. Like, I think both of my parents wanted kids. They just... Like, both of them traveled, like, a lot when they were younger.
So I think they just didn't have time or, like, they didn't have, like... They just didn't... Weren't meeting the right people who would... They were like, that person I'd have, like, a kid with or something. Mhmm.
So I think I think that's what it was.
When you look at the timing of their life, if I asked you to judge it, do you think it's a good idea or a bad idea?
I think it's good for, like... I mean, I don't know. I feel like it's with anything. Like, it depends what you want to some degree. It...
Because, like, I think that because they both worked so much, like, they they know themselves, like, quite well generally. Like, I think I think that they're both really intelligent and, like, have a lot of life experience, which I think is helpful for, like, me, obviously. But it's also, like, they only got to have one kid, and I... As far as I know, they wanted more. So I don't know.
I I feel like it depends on what you want.
Yeah. They ran out of time kinda quickly because they started late. Yeah. Yeah. So I'm I'm asking because, like, earlier when I said, do you have...
Are you thinking of dating again? And you were like, well, there's no time for that right now. So, like, are you gonna... Do you think you'll be one of those people who, like, looks up and goes, I'm ready to date again. You're gonna be 32, or do you think that you're gonna find a way to, like, make the whole thing work at the same time?
Because it's it's... I don't know if it's either or, but you're gonna have to make a concession on one side or the other.
I feel like I'm less likely to do that mainly because I think that... And maybe they felt like this too, and I just haven't asked them. But I think that I very much feel like I want roots. Like, I want a base, and I want people and, like, consistency and stuff like that. And, like, I I don't necessarily feel like I really desperately wanna, like, travel a whole bunch and, like, be working in a bunch of different places.
And maybe I will end up doing that, but I just don't feel that way. So I don't know. It feels more likely that I'd, like, find someone and settle more quickly. But, like
Okay. Yeah. I'm excited. Are you gonna live in the Canada forever, or are you thinking of spreading your wings? Are you gonna get out of Alberta once you graduate?
Do you think you'll stay where you are now?
I'd like to stay where I am now, but we'll see how jobs work out.
Gotcha. Is it hard to be away from your parents?
I don't know. We we call, like, every week, so I think it it hasn't been terrible. And, I feel like I'm so busy that I don't have time to be, like...
Yeah. Do you think they
do
you think they miss you?
Yeah.
How can you tell?
Well, because they tell me. So is that.
Are they trying to make you feel guilty or are they just sharing?
I don't think they wanna make me feel guilty. My dad jokes about wanting to make me feel guilty, but I don't think they want to.
Think they want you home, like, desperately?
Maybe. Well, desperately. They
do. It's
okay. Probably.
Yeah. You're supposed to be doing what you're doing, but, like, it's hard to be it's hard to be on the other side of it. And I would imagine that when you're older, it's harder yet. Yeah. Yeah.
Because, like, if my kids go away and build a family right now, they build a family through my mid fifties and my early sixties. If you Yeah. If you go do that now, you're building your family through your father's late seventies.
Yeah.
Yeah. It's it's probably things just feel more urgent maybe to them. Although your mom's younger. How did he do that? Pull a young lady back then?
They meant later. Like, yeah, they they meant later. So I think they were just... Like, even though she's ten years younger, I think they were at a similar place, like, mentally and, like, emotionally and stuff is my understanding.
Yeah. Oh, I'm so interested to see what's gonna happen to you. I would like to keep this podcast going for ten more years. I'd like to see... I wanna see who you end up with.
Yeah. I'm trying to figure out if you're your dad or your mom. I think you're your dad.
I've been wondering that too. I... Maybe. But I also have a lot of my mom's, like, anxious tendency, like, of, like, thinking of other people a lot. So I don't know.
Yeah. That's the lady stuff. I don't mean to be dismissive, but, like, that stuff sticks to you ladies, like, in, like, lines as far as I can tell. I've only been alive for fifty five years. But so far, everything I've seen indicates that, like, that kind of stuff can travel through through through women.
I I... And and also you're gonna hit a a moment where you wanna have a baby. Wait till you see that. Wait till that hits you. Oh, horrifying.
Jeez. Sometimes Arden's really nice to the dog and I'm like, oh, she's gonna be somebody's mom one day. Like, you can see just by how much she loves her dog. It's interesting. But she's not not...
She doesn't want a kid right now. Just... And and if you would have found her two years ago, she would have been less abusive with the dog. And it's... I don't know.
It's just... I don't know what happens. I didn't make the rules. You understand? I didn't build you all and, like, it's not up to me.
I'm just telling you what I say. So... And this probably sounds horrible because you're young. You probably are like, no. I'm in charge of my thoughts, and whatever I do will be what I wanna do.
I don't know. I I feel like... I've always kinda felt like life is more complicated than... Well, I just think that... Because, also, I feel like when you think something, you don't...
There's, like, so much behind that already that you're not necessarily consciously aware of. So, like...
I like you a lot. I could adopt you. Tell your parents I... I'm not willing to pay for anything, but if you need a place, I'd be willing to put you up for a little bit. Noted.
Yeah. No. Seriously. Not not... Don't don't, like, try to stay too long.
You know what I'm saying? Because I'd I'd like to I'd like to retire at some point too. But you you feel like a great vibe. I I wonder if people have ever told you that.
Yes.
Yeah? Maybe.
I don't know.
Like, good friends?
Yes. I don't know. I think I'm I'm discovering more like... This is ridiculous, but I'm discovering more like, oh, like, people like spending time with me, which is a ridiculous thing to be, like, real life.
You didn't know that previously?
I guess I just didn't internalize it in the way I am now.
Okay. What made you realize?
Well, the breakup helped, I think. And then, also, I think there's, like, two new friends that I've made and have been, like... And I think they're just more... I think it's partially that I'm a lot more communicative. And so, like, I'll just, like, say things and they'll...
And the way that they'll respond, I'll be like, oh, you like you like me. Cool. Which I I think that's probably a lot of it where I just like... I... I'm more likely to say things and they will respond in a reasonable way, but that will kind of surprise me.
Super... That's really interesting. I... How are you finding people? Like, when you say you've made a new friend, like, where do you make friends at?
Well, the the guy I've kind of known for a while through, like, different things, but we work together now. Then we started hanging out more in the in the summer. And then his partner is... I've become friends with and they're... I don't know.
It... Basically, through that.
You have to help me. I'm very old. You... When you people use the word partner, you confuse me. So, like, I...
You have to understand that when you say partner, what I think you're saying is he's gay. But He's not. But he's not. You just mean his girlfriend, but you guys don't say girlfriend anymore.
No. So they're nonbinary.
Oh, I see. Or that. I wasn't sure. I was trying to get to it. I would...
I wasn't... Like, I can never tell what the hell is going on anymore, I guess, is my point. And so Yeah. Yeah. I just...
Like, even, like, in in people who would not describe themselves as nonbinary, like, everyone says partner now. And I'm like, hey. We're trying to have a conversation here. I need a clue about what you're talking about. Like, help me out a little bit.
But I... Yeah. I don't... I guess that's just... Am I just old?
You can tell me. It's fine.
No. I think that's fair because I sometimes get... Like, when in this situation, I, like, already knew that they were nonbinary. So I was like, oh, they're partner. Right.
Because they're not binary. But they're definitely... When I hear that word, I'm like, I don't know what you mean.
So you said partner to kind of, like, to to protect or culture to represent their situation to me. Yeah. I got it. Okay. Oh, oh, that makes better sense to me.
Oh, well, thank you. I appreciate that. This is good. You should get your own podcast. Not about diabetes.
Pick a different topic. I don't need other people. Just saw somebody the other day. It's like, I'm making more pie. I'm like, alright.
Just everybody calm down. Calm down. I already got this covered. You know what I mean? We don't need everybody making a podcast.
Let's not ruin let's not ruin a good thing. Nobody's heard too many cooks. Right? Ruins the stew? You know the saying.
Okay. Right. Yeah. Yeah. Alright.
I got it covered. Right? Do they really need others? What kind of podcast do you listen to besides this one?
There's one called... I listen to a lot of history podcasts, actually.
Nice.
All of them are there... There's one called Behind the Bastards, which is about horrible people. And there's another one called Betwixt the Sheets, which is... The host is, a a sex historian, essentially, but she just interviews very. I don't know.
I think a lot of the podcasts I'm interested in are just, like, they interview random people and the subject is random, essentially. But there's, like, a consistent theme somewhat.
Mhmm. I'm comfortable with the way I'm doing it now at this point. Like, I I I really listened to my son a few years ago when he's like, I don't understand. Like, he's like, you're just gonna make a diabetes podcast forever. And I was like, I don't really think it's about diabetes.
No. I I don't think it is. Like, it is, but it's not.
Yeah. Yeah. That's how I feel about it. I'm like, it is, but it's not. And Yeah.
And and then sometimes I'll hear people are like, well, you didn't talk about their diabetes enough. I'm like, how much do you wanna talk about it exactly? Like, you know what I mean? Like, how much of this hours... Because I see people do that.
Like, sit down and, like, interview somebody, like, specifically about their diabetes and they take it, like, they're super, like, like, stiff spined about it. And, like, they act almost like... I don't wanna be harsh to people. But, like, it it feels to me like individuals pretending that they're doing what they think a company would do if a company was making a podcast about diabetes. I don't know if that makes sense or not.
You... My team...
No. That makes sense.
Yeah. Yeah. So they're they're doing their best impression of what a professional person would do in this situation. And I... Every time I see that, I'm like, that's horribly boring.
There's no way anyone's listening to that. Yeah. But but at the same time, like... Mean, honestly, like, how many minutes in a road do you wanna talk about diabetes? And, like...
And how many different ways do you think you can ask the same question before people just, like like, start saying the same things over and over again? Like, you wanna hear about the people, not about the... I'm basically giving away the road map here. But, like, you're you're doing it wrong. Like, nobody wants to see a news, like, snippet about diabetes.
Nobody... Nobody's watching your fifty five minute video about, like, your impressions about a CGM. Trust me. They're, like, they're clicking on it and they're going, and they're skipping to the end to see if you liked it or not. And that's how that works.
Nobody wants, like, a news segment about type one. Like, it's just mix it in. Like, do a thing and then just kinda stuff it in there a little bit. Like, you know you know when these these sneaky parents a couple of years ago started blending up vegetables and putting it in, like, chicken and stuff like that? That's what I do, basically.
You you know what I mean? Yeah. I take a little bit of diabetes. I throw it in the blender, and I stuff it in with, you know, your story about the boy and your life and what you're trying to figure out. I don't know.
I can't explain the world to everybody. I'm I'm busy. Okay? Alright. Alright.
What do you need from me? Anything else? What are we talking about here? Anything I missed? Anything I screwed up?
Anything you wanna get right?
I don't think so. I actually have to go.
What are you? Busy? You got a life?
Yeah.
Alright. Well, tell the sled dogs I said, And I'm super thrilled to hear about the paved streets. And I was I was absolutely heartened to hear about the airplanes. I think you guys are really onto something up there, and, I love it. So hold on one second for me.
I will just button up some private stuff and then let you get on your way. Thank you. I... By the way, sincerely, you were super open and thoughtful and introspective. I really appreciated this even if I feel like I'm rushing here at the end, which I apologize for.
Thank you.
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