#1878 Drunk Bunny

ER nurse Lisa shares how her seven-year-old twin’s Type 1 diabetes diagnosis prompted a pivot to school nursing. Discover how community support helped her overcome clinical fears of insulin.

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Key Takeaways

• Career Pivots for Caregiving: Lisa transitioned from her career path in hospital nursing leadership to school nursing so she could be more present and better aligned with her son's schedule following his Type 1 Diabetes diagnosis.
• School Nursing Disparities: Despite being a registered nurse herself, Lisa found that the level of clinical education and support in some school districts didn't meet the standards she was used to in hospital settings, prompting her proactive approach to her son's care.
• The "Mother Doom" Instincts: Lisa's clinical background and "Mother Doom" nickname from the ER helped her quickly identify her 7-year-old son's symptoms (frequent urination, extreme thirst, weight loss), leading to a diagnosis before DKA set in.
• The Power of Community and Podcasts: Hearing real-life applications of diabetes management on the Juice Box Podcast (like "dosing for sushi" and being bold with insulin) helped Lisa overcome the strict, fear-based clinical rules she learned as a hospital nurse.
• Fostering Independence: Just eight months after diagnosis, Lisa's 7-year-old was already recognizing when his pump wasn't in automated mode and changing his own pods at diabetes camp, showing the value of involving children early in their own management.

Resources Mentioned

• Touched by Type 1: touchedbytype1.org
• Tandem Mobi System: tandemdiabetes.com/juicebox
• Eversense 365: eversensecgm.com/juicebox
• US Med: usmed.com/juicebox or call (888) 721-1514
• Omnipod 5 Starter Kit: omnipod.com/juicebox
• Juice Box Podcast Support & Lists: juiceboxpodcast.com/lists
• Wrong Way Recording: wrongwayrecording.com

FULL EPISODE TRANSCRIPT

Introduction & Sponsors

Scott Benner (0:00)

Welcome back, friends. You are listening to the Juice Box podcast.

Lisa (0:13)

Hi. I'm Lisa. So I'm a I have a type one, first and foremost. I have seven year old twins, one of which was diagnosed with type one 11/24/2024.

Scott Benner (0:25)

Hey. Do you need support? I have some stuff for you. It's all free. Juiceboxpodcast.com.

Click on support in the menu. Let's see what you get there. A one c and blood glucose calculator. People love that. That's actually, I think, the most popular page on the website some months.

A list of great endocrinologists from listeners, that's from all over the country. There's a link to the private Facebook group, to the Circle community, and we have a a fantastic thing there. American Sign Language. There's a great sign language interpreter who did the entire bold beginning series in ASL. So if you know anybody who would benefit from that, please send them that way.

Just go to juiceboxpodcast.com and click on support. While you're there, check out the guides, like the prebolising guide, fat and protein insulin calculator, oh gosh, thyroid, GLP, caregiver burnout. You should go to the website. Click around a little bit on those menus. It really there's a lot more there than you think.

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. This episode of the Juice Box podcast is sponsored by US Med, usmed.com/juicebox, or call (888) 721-1514. Get your supplies the same way we do from US Med. A huge thanks to my longest sponsor, Omnipod.

Check out the Omnipod five now with my link, omnipod.com/juicebox. You may be eligible for a free starter kit, a free Omnipod five starter kit at my link. Go check it out. Omnipod.com/juicebox. Terms and conditions apply.

Full terms and conditions can be found at omnipod.com/juicebox.

Meet Lisa: ER Nurse & Type 1 Mom

Lisa (2:10)

Hi. I'm Lisa.

Scott Benner (2:13)

Lisa, that was easy, wasn't it?

Lisa (2:15)

Perfect. Alright. Perfect.

Scott Benner (2:17)

Yesterday, the lady said to me, what do you want me to say when I introduce myself? And I was like, I don't know. I would just introduce yourself. Yeah. So some people say, hey.

I'm Lisa. Some people go, hey. I'm Lisa. I'm a this, that. Like, it's really you know, it's interesting to see where people start.

Alright. Well, Lisa, why are we having you on the podcast? What looks like you might have a kid with type one diabetes. Is this correct?

Lisa (2:39)

So I'm a I have a type one, first and foremost. I have seven year old twins, one of which was diagnosed with type one 11/24/2024. And I think I'm got a little bit of a unique perspective in that I'm also a nurse. I've been a nurse for over twenty years. And then to kinda tack on to that, I also recently entered the school nurse world to kind of because we don't have, like, a big circle.

Right?

Scott Benner (3:08)

Mhmm.

Lisa (3:09)

You know, of people that stepped up to, you know, kinda help out with our guy. So I left the hospital full time, stayed there as needed in the ER. So I work in the ER just to keep life a little more spicy. Mhmm. So I do school nursing, so I see that whole side of type one kiddo management on top of the normal stuff at home that we deal with.

Right?

Scott Benner (3:34)

Let's figure it out, and let's hope that I can stay focused. I missed a spot shaving this morning just right under my lip, and I'm, touched it.

Lisa (3:43)

It's gonna irk you off.

Scott Benner (3:44)

Well, I'm gonna fix it as soon as you and I are done. Don't don't worry. I'm just hoping I can let myself off the hook right now and stop touching it because it's meaningless. If I don't put my hand on it, I don't know it's there. Anyway, this is not the point.

Twin seven year olds, boy girl, girl girl, boy boy. What do got?

Lisa (4:01)

Scott, they're they're boys. I'm gonna be cleaning up pee for the rest of my life.

Scott Benner (4:05)

No. They'll figure it out in their thirties, I imagine.

Lisa (4:08)

Oh my god. They can't they can't get a Target to save their life.

Scott Benner (4:12)

It's Yeah. That moment where you're like, it's on the wall. How to get on the wall?

Lisa (4:16)

No. It's this is this is my life every day. If I'm not, like, dealing with pee at work on the ground or on me, it's at who?

Scott Benner (4:23)

People are just peeing everywhere. Well, there you go. Two little boys, and one of them I don't wanna you know, we're not using their names, I imagine. But, like, what happens with the one? What what's the first thing you see?

Does does being a nurse help at all or not not at all?

Catching It Early: The "Mother Doom" Instinct

Lisa (4:39)

You know what? So my husband, and his friend had a nickname for me, mother doom, because, you know, working in the ER, you tend to see some pretty crazy things. And we had, like, a week where I was like, this kid is drinking a lot. But, you know, like, they're crazy boys. They're always running around.

But then he started having some accidents at night, which he didn't normally do. And the day before I tested his blood sugar, we were down at the penitentiary, down in Philly. And this kid was like, I need water. I need water. And I was like, kinda getting frustrated, you know, like mom of the year.

Right? I'm like, dude. I'm like, okay. I'll get you water. I'll get you water.

So, yeah, the next day, we got home from church, and I'm like, something is not right. And, yeah, definitely, those spidey senses were going off. Like, and he also looked like he lost weight. Like, that was another big, like, kinda key thing for me. I had tummy surgery years ago, so I had a glucometer at home.

Oh. Yeah. Okay. So just happened to be at home. And so I tested my blood sugar, my husband's blood sugar just to make sure this, like, dusty thing still worked.

And, like, ours were normal, and his sugar, it was, like, four thirty eight. Oh god. And I'm like I mean, it's I mean and, know, you went through it with your daughter. Like, it's that like, you'll never forget that moment because I just knew exactly what it was. And I looked at my husband, and I just went upstairs, closed the bathroom door, cried for a couple minutes, and then I called the pediatrician.

And we landed down at CHOP, and thank goodness we caught it before he was in DKA. So we had, like, the shortened non ICU version of diagnosis. Yeah. Since then, we also had his twin we, you know, we went through, like, the auto Autobody testing.

Scott Benner (6:40)

Through, like, TrialNet or something like that?

Lisa (6:42)

Yeah. TrialNet. Yep. TrialNet. Easy peasy.

So interestingly enough, what we ended up finding out so he does not have any of them yet. Hopefully, never. But my side of the family, I have Hashimoto's thyroid, which is autoimmune. My mom has the Michael Jackson disease, vitiligo.

Scott Benner (7:01)

Yep.

Lisa (7:01)

So that's autoimmune. And as of last week, I noticed this patch on his brother that I am most certain is vitiligo as well.

Scott Benner (7:12)

So Oh, okay. So Don't you think

Lisa (7:15)

runs strong in the family.

Scott Benner (7:16)

If Michael Jackson was still alive, he'd be thrilled that you thought of him that way and not the other way. You know what I mean?

Lisa (7:22)

Right. Right. Right. Without the fentanyl.

Scott Benner (7:25)

Well or or the little boys or whatever. Like, yeah, there's a lot of like, he he it's a big win for Michael Jackson right now when you when you said that. Right. You're really making it feel like I could listen to a couple of Michael Jackson tunes in the car this spring. Well, are you around here?

You say you went to CHOP?

Lisa (7:41)

Yeah. Yep. I'm actually right outside of Philly.

Scott Benner (7:44)

Yeah. Okay. Well, then there you go.

Lisa (7:46)

Yeah. Yep. So amazing resource team. They, like, right away, kind of invited me into, like, the, diabetes camp world, which was very interesting, Scott, because I learned that I do it for my son. I do it for the kids that are there.

I love, I'm the official, like, boo boo nurse, the med nurse, so I take care of everything nondiabetic. Okay. So and it's, like, a beautiful thing because they take the follow. Like, the like, I unfollow him. And so I have this week where I hear 50,000,000 alarms going off, but it's not on my phone.

You know?

Scott Benner (8:30)

Well, you know, I don't know if I wanna call you boo boo nurse or or mother doom. I'm not sure where this is gonna go. Are you also running around, like, every time somebody sneezes, you say tell them what's wrong with them? Is that that nickname wasn't just around this diagnosis, was it?

Lisa (8:44)

No. You know what? I like no. But Okay. If you've had the like, if you've had it for, like, three weeks, I'm like, okay.

Maybe you have pneumonia. Maybe you need a chest X-ray. You know what I'm saying?

Scott Benner (8:56)

And, like Okay. Yeah. Okay. So the peeing and the weight loss, does your brain go diabetes, or does your brain go something's wrong, or you think diabetes pretty much up front?

Lisa (9:10)

So, initially, before I put him on the scale, to be honest with you, like, it was just like, know something's wrong. I know something's wrong. But, you know, in the nursing world, like, you type one, you take care of them maybe for a couple hours in the ER, and then they go whether theyre being, you know, shipped to CHOP or, you know, if they're adults, they're being shipped up to ICU. So the type one piece definitely was not on my radar, but something was like, check his blood sugar. So deep down, I must have been like, okay.

You read this in a textbook somewhere.

Scott Benner (9:53)

Oh, it's interesting. Oh, that's really cool. Well, how how'd it go? Like, who was it a bigger adjustment for? You, your husband, your son, his brother, everybody?

Scott Benner (10:03)

He

Lisa (10:04)

he was just he's a he was a rockstar. Like, he was a rockstar from the get go. And I think for me now my husband is also in health care. He, at the time, he was X-ray, but now he's MRI dealing with the big magnet. But I think it was more of an adjustment for him, for, like, my mother-in-law who, you know, takes care of him.

You know? Because he they'd never shot somebody with, you know, an injection before. Okay. Like, for me, like, I had one moment while he was still in the hospital where, like, I was like it just kinda all came, like, crashing in. I'm like, oh my god.

I'm doing this for my this is, like, my kid. You know? This isn't somebody else's kid. This is my kid. And, like, the enormity of this is the rest of, like, his life.

You know? And I will say his name. Farron, who was the nurse that day, must have just, like, saw the look on my face, and he's like, go take a walk. I got this. And that's what I needed.

I just needed that space for a minute. But, yeah, definitely the people, you know, who have never, you know, had to give injections, like, you know, never dealt with insulin and all that good stuff. Definitely a huge learning curve for everybody.

Scott Benner (11:27)

Okay. So it's it's more about the the trying to, like, figure out the management stuff at first. It's overwhelming.

Lisa (11:32)

Right.

Scott Benner (11:32)

Okay.

Overcoming Fear & The Hospital Disconnect

Lisa (11:33)

Which, I just gotta throw this out there. Like, I, listening to bold beginnings, listening to you and Jenny, listening to the stories, not trying to be a suck up, but, like, for real, like, that's what got me through that period because, you know, like, there's so there's only so much information you get from the hospital. Right? From your endocrine team is technically, they're available 247, but not everything's a 911 call. You know?

Or you know what I'm saying? Yeah.

Scott Benner (12:06)

You're you're not always up

Lisa (12:07)

to Right.

Scott Benner (12:07)

Other stuff. Right.

Lisa (12:08)

But, you know, from like, I I laugh. Like, that's how I learned to dose for sushi was through juice pop.

Scott Benner (12:15)

Oh.

Lisa (12:16)

You know, not being afraid to give those big doses because, you know, you have to remember, like, as a nurse, insulin is a two person sign off in the hospital because it's you know, you could kill somebody

Scott Benner (12:28)

Yeah.

Lisa (12:28)

With it. Right? So, like, getting out of my own head that it's okay. I'm not gonna kill my kid. You know?

And that's honestly, like, what this podcast did for me for sure.

Scott Benner (12:40)

Listen. I'm I'm thrilled that it did that for you, but don't let that stop you. That the the honesty that shouldn't stop you from sucking up if you want to. Yeah. So, I mean, that Make

Lisa (12:49)

sure you shape your face there, Scott.

Scott Benner (12:50)

Yeah. Yeah. Oh, so yeah. Anytime I get a little too full of myself today, you'll be like, there's a patch of hair under your lip, Jack. You just missed it.

How do I miss it like this? I tried to shave in the shower.

Lisa (13:01)

It happens.

Scott Benner (13:02)

I'm usually good at it, though. It happens. Yeah. Oh, it's a little disappointing. So let's talk about that bit a little more.

Right? Insulin's a two person sign off in the hospital.

Lisa (13:12)

Mhmm.

Scott Benner (13:13)

And what does that do to you? It it reinforces the fear?

Sponsor Break

Scott Benner (13:19)

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Scott Benner (14:21)

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Lisa (15:25)

Yeah. Like, now in the ER, things, like, are a little scaled back now. But, like, for me growing up as a nurse, like, anytime you were giving a corrective dose in the hospital, yeah, you had to find a nurse. Like, you know, even if it was down the hall. Hey.

You see this? I'm given seven units. Sign me off. You know? But, yeah, it was very, even Lantus.

Like, don't judge me for this. But, like, I was more paranoid about the Lantus. Like, even though in my brain, I knew I mean, he's on the pump and everything now, but, you know, I would give the Lantus. I'd be like, oh my god. Is he gonna drop right away?

But, like, I know better. You know? But, yeah, it's definitely, like, you know, if you're giving if somebody's on an insulin drip, which, again, like, thank god he didn't need that in the hospital. But, like, even just the injections, I mean, it's just it's programmed in your head. It's a high alert medication.

You know, you could kill somebody with this and yada yada yada. And so and now here I am unsupervised. Like, here's my like, god bless them, but, like, my X-ray tech husband. I'm like, Tony, can you double check this? You know?

Scott Benner (16:38)

I love that you're from Philly and your husband's name is Tony.

Lisa (16:41)

Yeah. Literally. It's awesome.

Scott Benner (16:43)

Let's just get it out of the way now. Italian. So which cheesesteaks do you prefer?

Lisa (16:47)

Oh, no. You know what? Oh, Dalesandro's.

Scott Benner (16:51)

Okay. It's a it's a newer choice.

Lisa (16:54)

Yeah. Dalesandro's. They're not as greasy as the other ones.

Scott Benner (16:57)

You know, never went to Pat's once.

Lisa (16:59)

No. It's

Scott Benner (17:00)

The place across to them that we used to go to a lot. What was it called? Gino's. Gino's. Yeah.

Lisa (17:04)

Cheese fries, though. They have good cheese fries.

Scott Benner (17:06)

Yeah. Yeah. It's interesting. See, people know. Yeah.

That's all. People go to Philadelphia, while they're here, they're like, I'm gonna get a cheesesteak for sure while I'm while I'm here.

Lisa (17:15)

Oh, yeah. Or Steve's. Steve's is good too.

Scott Benner (17:17)

Tell people how amazing it was when the Eagles beat the Chiefs in the Super Bowl.

Lisa (17:21)

Wait. Can I tell you something funny real quick?

Scott Benner (17:23)

Go ahead.

Lisa (17:23)

So I was six months pregnant with these these children,

Scott Benner (17:27)

and my husband say monsters.

Lisa (17:30)

Well, that too.

Scott Benner (17:31)

That's a lot people. Pause. I'm like, is she just pivoting from a word right now?

Lisa (17:35)

At this time, they were still quiet and not arguing with me or trying to kill each other. Okay?

Scott Benner (17:39)

I knew.

Lisa (17:39)

Yeah. Yeah. So I was six months pregnant with them, and my, like, hardcore eagles fan husband, they won the Super Bowl. And there I am take because we have an older son too. I should have told you that, Scott.

I have a 23 year old.

Scott Benner (17:53)

Okay.

Lisa (17:53)

And six months pregnant with twins, taking the older one down to the parade, which I probably should have done in hindsight, like, you know, technically geriatric pregnancy, like, you know, twins. Yeah. And, yeah, like, down there, you know, everybody's indulging in different things, drinking, smoking, and there I am with these twins. And I'm like, oh lord. Is that how I ended up giving my kid type one?

Like Nah.

Scott Benner (18:19)

I don't think so.

Lisa (18:20)

Just kidding.

Scott Benner (18:20)

But I did just wonder, do they pee in you while you're pregnant too? They don't pee while do babies pee while they're oh my god.

Lisa (18:27)

Do they Everything's all in that amniotic fluid. Yep. Yep.

Scott Benner (18:30)

Yep. Wait. Wait. Hold on. Hold on.

Hold on. On. Do fetuses pee? Let's just go there for a As soon as you were talking about pee and then pivoted the kids being inside you, I was like, oh my god. Do they pee while they're in A fetus starts making urine during pregnancy, and that urine becomes a normal part of the amniotic fluid.

And the fetus allows also swallows amniotic fluid, and the fluid gets recycled that way. Dear god, what's wrong with everything?

Lisa (18:55)

There it is.

Scott Benner (18:56)

May I just say right here? When people say, isn't life amazing? It's it's it's an obvious obvious decision to say there's a god. I say, if there was a god, why would he have developed it like this? Do you know I mean?

Or unless he is a man, and he just came up with the first thing he went with. And he was like, that's fine. They can pee and then drink it.

Lisa (19:14)

There it is. But then that's why we have the placenta to keep it nice and clean.

Scott Benner (19:18)

I mean, you say. But but I I do think, like, a female god would have said, like, oh, why did we do it like this where the pee goes back into the baby? Why don't we find another way to, like, port that out? You know what I mean?

Lisa (19:29)

There definitely would have been a cleaner system once they're born.

Scott Benner (19:32)

This is horrifying. Placenta is doing the main waste filtering work, not the fetus going to the bathroom the way a newborn does. It sounds strange. Well, yeah, it does sound strange. A womb that is a normal part of the I mean, normal.

What's normal?

Lisa (19:47)

Nothing. There's nothing normal anymore, Scott.

Scott Benner (19:50)

Anyway, point being, that kid's been peeing on you since day one.

Lisa (19:53)

Day one. Since day one. Absolutely. That's awesome. Absolutely.

Scott Benner (19:58)

Nothing like being a mom.

Lisa (19:59)

No. And you know what? Like but that also kinda goes back, like, I so we I would take them to the car show every year. We would go down to see the lights at oh, what's it called? Wannamakers or whatever.

Yeah. Macy's. Yeah. And Wannamakers. We

Scott Benner (20:17)

That was an old reach back to your mom.

Lisa (20:18)

I just ate it myself. Oh my gosh.

Scott Benner (20:20)

Yeah. Yeah. That's awesome. You had vinyl wait. You had vinyl chairs in your kitchen at some point.

I know for sure.

Lisa (20:26)

In '81, Scott. Take a deep breath.

Scott Benner (20:29)

I know for sure. Wadamakers. That's awesome. We used to go to Clover. Oh, Jess, shut up.

Go even.

Lisa (20:37)

Oh my gosh. Hey. My friend's mom was a hairdresser at Clover.

Scott Benner (20:40)

I met my first I met my first real girlfriend at Clover. She was a Aw. She was a cashier there. I went through I'm gonna let you get to this in a second. I went through a line.

I was just there getting something, and this girl was so pretty. Like, and I just froze. Like, when I got up to her, I wanted to say something, and I didn't. And I thought, that's okay. She works at Clover.

She's a she's a registered person. I by the way, this used to not be called stalking. I just thought, like, I'd go back and, like, I'll see her again. I'm gonna ask her out. You know?

It got to the point where, like, it didn't matter how many times I walked into that store. Like, she was never there.

Lisa (21:13)

Oh, no.

Scott Benner (21:14)

And then it turned into, like, a thing where I was like, well, am I gonna stop? Or you know what mean? Because it's, even felt creepy to me at that point that, you know

Lisa (21:24)

She was gone.

Scott Benner (21:25)

Oh my god.

Lisa (21:25)

Never existed.

Scott Benner (21:26)

Anyway, I rolled through there one day, and she was just standing there, like, running that cash register. And I was like, oh my god. I like, there was, like, attached to this little mall, and I ran into the mall. I grabbed, like, a single flower from a flower shop. I got in the line.

I waited, it was my turn. I said, hi. I saw you here about six months ago, and I wanted to ask you out. And I didn't, and I've been coming back into the store ever since. This is the first time I've seen you.

And I was like, this is my name. This is my phone number. Like, if you wanna connect You want me was a that's my own damn Tinder or whatever it's called.

Lisa (22:00)

Remember those days? Oh my gosh.

Scott Benner (22:02)

And I dated that girl for a year before she cheated on me and broke my heart.

Lisa (22:05)

Oh, well, you know what? And now you have your beautiful wife and family.

Scott Benner (22:09)

She and she can break my heart every day. She's been doing it for three decades. She's so good at it. I mean, honestly. Arden was giving me crap the other day, I went, hey.

Hey. Hey. Hey. Mom's already got this covered. Yeah.

That's right. Was like, you you don't need I don't need a backup. Okay? Right. Right.

Lisa (22:25)

No. She's she's like the junior, the missus junior.

Scott Benner (22:28)

I was like, your mom's doing a great job. I'll let you know if she dips in production. You can step in and start giving me crap. Okay? But, like, for now, this the your mom's a pro.

She got this.

Lisa (22:38)

Yeah. Yeah. Oh my god.

Scott Benner (22:40)

Anyway, Michelle, if you're out there, I'm sorry if I ever did anything wrong to you, but I had a really good time. Nevertheless, let's move on. Sorry.

Lisa (22:47)

Oh, that's his start.

Scott Benner (22:48)

What Well, there's a story that's never been in the podcast before.

Lisa (22:51)

And what a what a throwback to

Scott Benner (22:53)

get in one, Lisa. There you go. Like, not all and people don't always get good news stories. Sometimes you're like, this guy telling this one again?

Lisa (23:01)

No. That's a good one.

Scott Benner (23:02)

Yeah. That's a good one. It's such a nice can I tell you one other nice thing I thought I did for her?

Lisa (23:05)

What? What did she do?

Scott Benner (23:07)

It was her it was her birthday. She was working at that Clover still. Basically, we were young. Our lives were, like, working, having sex, and going out once in a while. Like right?

Like so Right. It was her birthday. She's working at Clover. She gets off at, like, late at night, like, 10:00, and she's supposed to come to my house afterwards, you know, for her birthday. Earlier in the evening, I went I'm gonna sound insane for a second.

But

Lisa (23:29)

I can't wait.

Scott Benner (23:31)

Went out and got me and my buddy got a bunch of balloons, and we blew them up and, like, enough to no. Don't oh. Enough to fill her car with front seat, back seat, floorboards, dashboard, everywhere. And then we had a video camera, and she she I was way ahead of the Internet, by the way. I just wanna say.

Lisa (23:50)

Oh my god.

Scott Benner (23:51)

So she wanders out of work, and she used to have to do the books at the end. If I remember rightly, like, she was going to school to be an she might be an accountant now. I don't know. Because she did cheat on me before she got to, codify that decision. But I but so she stayed late if I remember, like, doing, like, TILs and stuff like that.

So she wanders out into this big empty parking lot, just her and a couple of, like, stragglers that worked there. And she could see her. She was smoked. I remember, like, she came out. She lit a cigarette.

We're watching from, like, a a vantage where she can't say us with a camera, and she's wandering across the parking lot, she's smoking her cigarette. She looks like she's had a pretty long day. If I'm not mistaken, like, she probably went to school all day before that, you know? Oh, my gosh. And you see her pull her key out.

I know you guys don't know about this, but there used to be, like, a key you put in the side of your car and opened it.

Lisa (24:37)

No. They don't.

Scott Benner (24:37)

No. No. They have no idea. And I see her look up, look in the window, and you could even though we were maybe 70 yards away from her, you could feel the what the look on her face. You know?

And then she's like she opens the door, stares for a second. You can see her contemplating what to do, and then she just starts pulling the balloons out, and they're, like, all over the parking lot. Oh, I probably killed so many dolphins that day.

Lisa (25:01)

That's okay.

Scott Benner (25:02)

Anyway That's okay. I thought she was gonna find that endearing, but I don't think she did. That was the it was the gesture. Oh, she did enjoy watching the video afterwards. I just thought it was funny.

Anyway, that's all I got for you.

Lisa (25:13)

I love it.

Making the Switch: Moving to School Nursing

Scott Benner (25:14)

Alright. On our way. We're on our way now.

Lisa (25:16)

We're on our way.

Scott Benner (25:17)

Okay. So this kid of yours has diabetes. You're overwhelmed a little bit, but what do you do to pull it together? Right? So you have support at the hospital side.

You are a nurse. You're getting through your fear. Right. You find the podcast. Like, you start to settle in.

Like, what's moving forward look like once you're settled?

Lisa (25:32)

So okay. So there was a couple things. So there was you know, twelve hour shifts was fine before that Oh. And before my husband's job changed because then he ended up going to evening shift. And, you know, again, like, unfortunately so my the kids had gone to an extended care program at the school, but, there were some issues and challenges with, them.

You know I don't wanna say taking care of him because, you know, like, we don't expect people to take care of our kids' diabetes like we do. Right? Like, you're essentially just keeping them alive, troubleshooting them. But, unfortunately, like, we had a not great situation where someone that was ahead of the program was like, well, you know, we can't do that here. We can't, you know, we can't check his blood sugar.

Well, anytime if it alarms, we'll just call 911. Now, Scott,

Scott Benner (26:31)

can call 911 if your high alarm were off?

Lisa (26:34)

I swear to god. Can you imagine? I was horrified. But you know what? Me being me, I'm like, I know this is not, like, the case.

So here I go on the district website because it's, you know, a program from the school, and it clearly says we accept kids with disabilities and yada yada yada. Yeah. Copy and paste that. And, like, I sent it to her boss. I'm like, I just because now you have to remember, Scott, he was still in the hospital at this point.

Like, I was, like, not messing around because we were on Thanksgiving break, and I'm like, I need to get all this situated. You know, of course, once I got the boss involved, they're like, no. You know, we can you know, we'll we'll learn. We'll figure it out. But, like, at that point, I'm like, the boss isn't there.

Right? Like, it's this woman and some you know, a couple other people who that that they were phenomenal. I'm like, do I really wanna leave my kid with you? You know? Thinking that that's your, like, first reaction is you're just gonna call 911 all the time.

Scott Benner (27:32)

First reaction is we don't wanna be involved.

Lisa (27:34)

100%.

Scott Benner (27:36)

Yeah.

Lisa (27:37)

And that was just kind of the tip of the ice berg that I learned. And I know it's not just our school district, but in school districts in general. So I had to make a move, and I now my trajectory was nurse nursing leadership. Like, I was a patient safety officer, risk management. Like, I did so much stuff, like, for big health care organizations in our city.

And I'm like, okay. Two master's degrees, certification, all that's on pause because I gotta take care of my kid. Right? I gotta make sure my kid's safe. I don't want to put him in a situation where people don't wanna take care of him or learn to.

So that's how I ended up making that switch to school nursing so, you know, I could be off when they are and all that jazz.

Scott Benner (28:23)

So Are you telling me you have two master's degrees, or you were going after them and you stopped doing that to

Lisa (28:28)

do this? I I I I finished them.

Scott Benner (28:31)

I did them. What do you have master's in?

Lisa (28:33)

So one's in, nursing administration, and the other is from Temple. While I was working at Temple, I did my health care administration.

Scott Benner (28:41)

Makes people hear our accent and just think we're stupid. You know what I mean? I know I know people right now in the Midwest are like, that girl's got a degree? That's amazing. How'd she do that with her obvious mental disabilities?

Yeah. It's because we talk funny. It doesn't mean we're not smart. That's all.

Lisa (28:58)

I know how to I know how to write a paper. Okay?

Scott Benner (29:01)

Well, that's really cool. Oh oh, wow. But so, well, listen. It's been what? Year four months now since diagnosis, something like that?

Mhmm. You obviously did this, but did you do it recently to switch to school nursing? I mean, I know you're still in the ER once in a while, but when did you make the switch?

Lisa (29:17)

So last March, I went per diem for the school district. I just to get my foot in the door and see if I would be able to survive. And then, yeah, and then when my husband made his little change, I'm like, you know what? I'm just gonna do it. I'm just gonna do it.

I'm gonna go full time. Financially, we'll figure it out because nobody goes into school nursing for the pay.

Scott Benner (29:40)

It's a hit. Right? I mean, you you lose your overtime and, like, all that stuff. Right?

Lisa (29:45)

Yeah. And if you don't, like, if you don't work, you don't get paid. So, like, talk about, you know, a financial culture shock for my family, but we're figuring it out.

Scott Benner (29:55)

I gotta tell you. Most jobs, if you don't work, you don't get paid. I just wanna say that. True story.

Lisa (29:59)

True story. Absolutely. Absolutely.

Scott Benner (30:03)

My question is, though, how long has it been since you made the decision?

Lisa (30:07)

To to go so it's been a year.

Scott Benner (30:10)

A year. Okay.

Lisa (30:10)

It's been a year. Yeah.

Scott Benner (30:11)

My question is, did you need to do it?

Lisa (30:14)

You know what? Yes. Okay. I'm gonna say

Scott Benner (30:17)

yes Because I there are times I feel like I don't know if I say it every time because I I don't wanna hurt people's feelings, but, like, I think every time someone tells me, for example, they have, like, a a a diabetes service dog, I

Lisa (30:28)

go Mhmm.

Scott Benner (30:29)

Did you need to do it? Right. And, like, because I know the feeling in the beginning of I gotta quit my job. I mean, people the people whose kids get diagnosed with diabetes, they've done homeschool after that or

Lisa (30:40)

Right.

Scott Benner (30:41)

That's that's not a small number of people. That happens a lot. Right? The nurses that switched to school nursing, not a small number of people. But I always wonder if they look back in hindsight and go, it would have been alright if I didn't do this.

Lisa (30:51)

Did I you know what? I I think because so I was so career focused most of my life that this kind of was a I don't even know how to describe it, but it was just this huge, like, wall for me because I'm like, I wanna keep things as normal as I can for my kid, for my family. And, you know, and my husband, like, god love him, like, he really he, like, he will he will tell you. Like, he will say, like, I'm not good at this stuff. You know?

Like

Scott Benner (31:29)

I feel when when the god love them came out, I figured we were, you know

Lisa (31:32)

Yeah. Was gonna be a little a but.

Scott Benner (31:34)

We love him. You know? You know?

Lisa (31:36)

Yeah. But he owns it. And

Scott Benner (31:38)

that's Tony. It's wonderful. That that's my

Lisa (31:41)

that's my Tony. Right? My Tony. But, like, he owns it. And, you know, I just kinda I was not really fulfilled.

Like, I left leadership, Scott, because I just, you know, I didn't really fit

Scott Benner (31:56)

in. Mhmm.

Lisa (31:57)

Like, I was one of those people. I was one of those managers where I would switch up my hours, and I would would work night shift and day shift and both shifts to, you know, to keep my staff from going out of ratio and things like that. And, you know, when you have even if it's not that, you know, diabetes, but, like, you know, when you have a kid that requires a little extra both my kid have IEPs, ADD. You know, the ADDs are a little coin term now or whatever. I just felt like I needed to be more present.

And being in those leadership roles, I couldn't do that. So yeah. So for us, I felt like it was I really wanna be here and be present.

Scott Benner (32:39)

Yeah.

Lisa (32:39)

If that

Scott Benner (32:40)

makes sense.

Lisa (32:40)

Okay. Yeah.

Scott Benner (32:43)

Hold on one second. I'll tell you what I'm doing in a second.

Lisa (32:46)

We shaving our face.

Scott Benner (32:48)

I wish it was that. Hold on. I don't know how this happened. I got a message I got a message that I had to answer, which Yeah. Which made my which made me pick up my phone.

Right? So I replied to the to the message. And then somehow, I clue I'm I'm old, so I close apps when I'm done with them. Of course. In fairness, my wife is not old, and there's currently 875 apps open on her phone.

2,500 of them she's never used before and doesn't know what they are. I think it's more

Lisa (33:18)

of a woman thing than an age thing.

Scott Benner (33:19)

I mean and there's gotta be 17,000 emails. I just delete them all. It doesn't matter. Those emails to me are the digital representation of the stuff in my basement that also we'll never look at again. Nevertheless, I swiped up on iMessages and got rid of it, and it brought up my Facebook in front of me.

And Oh. There was just a new message in the group, and somebody said, I'm currently crashing and feeling horrible. My husband's not waking up. I took four glucose tablets forty minutes ago, and it's not getting better. Should I just keep taking tablets even though it's clearly not working?

Lisa (33:55)

Mom at that point.

Scott Benner (33:56)

Yeah. So she's heart. She's 67. She's obviously I I and so I actually I thought, like, I thought, you know, I'm working. I I can't say and then I thought it would help if she thought to post this, like, I'm gonna respond.

Lisa (34:08)

100%.

Scott Benner (34:09)

So I just said juice, high sugar drinks, swish them in your mouth, then get something substantial in. So hopefully

Lisa (34:16)

Bless our hearts. 67.

Scott Benner (34:18)

And other people, yeah, other people are popping on now. Anyway, if you're not in that Facebook group, you're making a mistake.

Lisa (34:25)

Exactly.

Scott Benner (34:26)

Yeah. Yeah. Never although somebody the other day asked a question, and one of the respondents was, you should ask a doctor that. And I was like, this is a online community.

Lisa (34:39)

Like I can't.

Scott Benner (34:40)

Yeah. Yeah. Yeah. Like, of course, she's probably gonna ask her doctor that. She's she's probably, like, information get also, she's an adult.

Also, shut up. Right. No. It just feels like you know, here. Listen.

I'll give you an example. Yeah. I know some of you buy groceries at Target. I think that's abhorrent. I think Target is for crap, and the grocery store is for groceries.

Right. When I walk through Target and I see you buying your groceries, I don't run up to you and go, you should be shopping in a grocery store.

Lisa (35:13)

Right.

Scott Benner (35:13)

Like that's to me, like, the same thing. Like, abhorrent by the way, abhorrent was probably too strong of a word.

Lisa (35:18)

No. No. But fair. Fair.

Scott Benner (35:20)

I don't like that there's a ream of notebook paper so close to bananas. I don't think it's natural. Okay? I'm not kidding. So Or your

Lisa (35:28)

hemorrhoid cream right next to the oranges.

Scott Benner (35:30)

I don't know why you chose that, but yes. Now, I I would say this. I would say, like, it's a weird thing to come into a group where people are asking each other's opinions. They go, don't ask these people their opinions. Like, what are you doing here?

Like, I don't under

Lisa (35:45)

I anyway. It's the keyboard warriors, though.

Scott Benner (35:47)

Stop. I don't even think it's that. I think it's a little Oop its day. You know what I mean?

Lisa (35:51)

Yeah. No. Yeah. Yeah.

Scott Benner (35:52)

Yeah. It's it's okay. Well, I'm so sorry.

Lisa (35:54)

No. You're good.

Scott Benner (35:55)

I don't know where the hell we were because the thing happened with the kid and the thing. What were you talking

Lisa (35:59)

about? Talking about career.

Scott Benner (36:00)

Oh, I'm sorry.

Lisa (36:01)

How no. No. No. Yeah. How I went into school.

Yeah.

Scott Benner (36:03)

Okay. So you think it was a good idea because

Lisa (36:06)

To be present.

Scott Benner (36:07)

Yeah. Just to be to be around there and to be helpful. Alright. So you're in their school?

Lisa (36:11)

So I'm actually not in their school, but I'm literally, like, five minutes from there, which is amazing.

Scott Benner (36:19)

So it's more about balancing your schedule with their schedule then?

Lisa (36:23)

100%. And you know what else? Like so back to, like, when he was first diagnosed. So I don't know how it was, like, when Arden was diagnosed, like, with the school, but, like, it like, I went in myself and showed the nurses in his school, you know, the pump. Well, at that point, he was injections.

But so we did injections teaching. We did pump teaching. We did, you know, the glucometer. And wait. Don't laugh.

But in the hospitals, we're used to, like, these big, like, industrial glucometers.

Scott Benner (36:59)

Yeah. Sure.

Lisa (37:00)

So, like, you know, when you get into, like, the community and you're you see these, like, little ones, you're like, oh my god. What the hell is this? Like so and that was, like, another kind of little drive for me, to be honest, because I'm like and the girls that are at his school are amazing. I actually used to work with one way back in the day at Jefferson. Like, amazing nurses.

We're very fortunate. But that's not everywhere. And I, like, I know, like, the the podcast about, like, the the error that that, you know, nurse me. I'm like, I can totally see it because these so I went in, Scott. Like, I'm a nurse.

Like, can you imagine, like, a parent with a newly diagnosed diabetic who's not health care, who's, like, still trying to figure it out, having to go in and teach somebody, like, a nurse? Like, it's crazy.

Scott Benner (37:50)

I take your point. Can I take the opposite side of this?

Lisa (37:52)

Please.

Scott Benner (37:52)

Alright. Right now, there is a girl, I'm guessing in the shower at my house because she's gotta be at school in, an hour and a half. And she's gonna be 22 this summer. Mhmm. Her current a one c is why does it take so loading to load?

5.5.

Lisa (38:11)

Oh, that's awesome.

Scott Benner (38:13)

In the last, however long this app is is chain you know, tracking this thing. She's been in range 92.2% of the time.

Lisa (38:22)

It's amazing.

Scott Benner (38:23)

Yeah. And so, like, my question is, is that, like and she's about to get a degree in psychology. She's got three more classes, then she's gonna go off and get an advanced degree because I don't think she wants me to stop working either. Everybody gotta keep me moving, you know? And she's fine, and I'm not a school nurse, and I and I I'm I don't know.

Like, I I mean, the only thing I can tell you is that my schedule did match up with hers, and I could be available during the day, which I think is really valuable.

Lisa (38:49)

Right.

Scott Benner (38:50)

But the rest of it, it I mean, I ran into everything you did. Right? Like, you know, in was it when did they try to kill her the first time? I think kindergarten. I think they tried to kill her the first time in kindergarten.

We stopped it. We made a little more inroads in explaining things to people.

Lisa (39:07)

Mhmm.

Scott Benner (39:08)

I spent time explaining and re explaining things to people, getting on the phone, walking them through it when I couldn't expect them to know it. Right. It worked. Now I'm not in a factory. I can pick up a phone when I need to in the middle of the day, like, stuff like that.

Back then, in fairness, I don't even think I was right. I wasn't making the podcast. I was I mean, I was a stay at home. Was basic I was basically cleaning the the laundry. And shot I did other things, by the way.

Okay. I don't wanna dig into everything I did or, like, you know, don't I don't want stay at home people, man. You're

Lisa (39:38)

a busy bee, though.

Scott Benner (39:38)

I was a stay at home for a long time. I know how hard it is. Don't worry. There's a lady downstairs still doesn't know what day the trash goes out in thirty year. She'd be like, is it Tuesday?

Nope. Not Tuesday. No. Okay. She don't know.

If I leave the house for too long, I think they start considering just throwing the dishes away. But but I did have act so I I was available or could make myself available. I do think that was a really big deal. I wouldn't Right. I wouldn't undervalue that.

But Right. I don't know. Like, it's it feels like a lot just to pivot your life around like that.

Lisa (40:12)

Well and and here's the thing. Like, the one thing I I like, my so I'm very fortunate. There's actually another type one mom that I work with. She's a nurse too. And in every other health care setting, right, like, you wouldn't walk into a hospital and be like, hey.

You know, let me show you, like, let me show you how you should check my blood pressure. Right? Like Yeah. And I get, like, they the nurses can't know everything. It's impossible.

But every other health care setting, like, there is a level of clinical education. Right?

Scott Benner (40:49)

And

Lisa (40:51)

that is not the case in in the school districts. And, you know, I'm in, like, the different school district groups and you know? So I know it's, like, not just us. And I'm like, wait a second. Like, this is, like, probably the most at risk setting.

Right? Like, you're in the community, whether it's your diabetics, your seizure kids, you know, whatever else. There's a million different kids with different issues we take care of. And so, like, why is that not the same? Why is that bar not set as high as it is in other settings?

So

Scott Benner (41:28)

So I agree with you. And I and and I I'm trying to, like, kinda kinda say both sides, like, of this because I don't want I because I also would tell you that I sent my kid off and I thought the very same thing. I thought Right. If this nurse knew what she was doing, wouldn't she work in a hospital?

Lisa (41:42)

Right.

Scott Benner (41:43)

You know, the guy's driving a school bus. Like Yeah. Like, if he's a retired guy or somebody whose best job they could get was driving a school bus And now they're in charge of the health, like and by the way, I I don't think I could get a job driving a school bus. So, like, I'm, you know, I'm like, I'm not you know what I'm saying? Like, it's no knock on anybody.

I'm just saying that this is school bus driver, not a not a medical person. And it feels like there's gonna be medical issues everywhere, but they're not really, though. They're like, for the most part, I find the most part, like, managing diabetes is, like, being ready for when it happens, not

Lisa (42:14)

Right.

Scott Benner (42:15)

Taking care of the thing that's always happening because it's not always happening. It's Correct. You know what I mean? Like and but there's no way to know that in the beginning. Right.

So it feels the way you're describing because I felt that I felt that way too.

Lisa (42:26)

Right.

Scott Benner (42:27)

What I'm saying is, I mean, what gear is the kid using there? They got, like, a pump?

Lisa (42:31)

Yeah. So we got the Omnipod at DexCom.

Scott Benner (42:34)

Is it an is it an automated system? Mhmm. Yeah. I mean, you know, they're he's probably okay. You know I Like right?

Scott Benner (42:41)

Right. And the day's pretty I mean, except they move their schedules around sometimes, like, they're trying to kill you. Like, you know, like, the days are pretty structured. Right? Right.

Like, you know, when you're putting in food, you know, when you're putting in insulin, etcetera.

Lisa (42:54)

Exactly.

Scott Benner (42:55)

I don't know. I fixed it with texting. Right. Had your fear too, and I was just like, here. This is a phone.

You and I are now talking.

Lisa (43:02)

Right.

Scott Benner (43:02)

And, you know Right. By the way, now she don't want you know, if I if I texted her now about her diabetes, she'd like, I didn't see that. I'm like Right? Okay.

Lisa (43:10)

Well and you know what? He's in second grade, and bless his heart. Like, he actually was the one that identified we had one day that was just because oftentimes, I'm the only nurse at the school I'm at. Mhmm. So, like, I can't just, like, get up and leave usually.

Sure. And we were having these highs, and I'm like, okay. Like, this isn't making sense. Let's dose him. Blah blah blah.

And then I'm like, okay. Something is is definitely the site needs to be changed or something. So I'm, like, coordinating another nurse to come to my school for the fifteen minutes it's gonna take me to get to his school and change everything and come back. And he actually texted me, Scott, at seven years old and was like, mom, it's not in automated mode.

Scott Benner (43:59)

Good. I was like, I was so proud of him.

Lisa (44:02)

I'm like, oh my gosh.

Scott Benner (44:04)

You were do you didn't think, oh, hell, I could have kept my job at the ER?

Lisa (44:07)

Yeah. Seven years old. I was so proud of him.

Scott Benner (44:12)

I'm like That's awesome. But that's my point is that's gonna keep happening. It's just hard to believe that in the beginning. Yeah. You know?

And for people that it doesn't happen for, well, then Right. Right on. You you know what I mean? Like, if it if it becomes an issue. But you brought up earlier that episode of the podcast that I did with a woman who if I'm remembering it correctly, the school nurse gave the kid, like, a hundred and fifty units of insulin or some crazy thing.

Like and people are like, how is that possible? Like, trust me. You gotta go listen to it. Horrific. There's this this crazy, like, stream of events that leads to the mom, like, saving the kid.

And, like, it's a it's a crazy story. It's so popular on the podcast because why? I think it's I think it's because it it's a little bit of that, like, true crime feeling a little bit, and people love that. I actually, we should really dig into the psychology of why that is, but, I don't have time right now for that. And but the other reason is I think it, like, cements people's fears.

Lisa (45:08)

Right.

Scott Benner (45:08)

They're like, I knew that school nurse was gonna kill my kid. Right. You know what I mean? And look at almost but what I would say to that is Right. That kid didn't even die.

Lisa (45:18)

Right. Yeah.

Scott Benner (45:19)

Right. How many, you know, how many times you turn the news on and hear about the school nurse killing a kid? Like, it doesn't happen that frequently.

Lisa (45:26)

Not not

Scott Benner (45:27)

frequently enough to upend your life, I think. Right. You know what I mean?

Lisa (45:31)

And you and, like, I guess, like, for me, like, having the patient safety background, like, again, like, I always have to be mindful. I'm not in a hospital. I don't have, like, joint commission or department of health. Like so I have to scale myself back. But the one thing that I think about is being proactive.

And I do think that our districts do have the duty to make sure, like, if you're gonna if you're gonna be putting nurses in these schools, you know, you better make sure they can safely take care of them. You know? Why are you laughing, Skye?

Scott Benner (46:08)

Long have you been alive?

Lisa (46:09)

Why are

Scott Benner (46:10)

you laughing, long have you been alive?

Lisa (46:12)

Forty four years.

Scott Benner (46:13)

Please go ahead and name me all the places you run into where people are rock solid and their jobs are doing what they're supposed to do.

Lisa (46:20)

Know. But we can do better. We can do better. Better.

Scott Benner (46:23)

We could.

Lisa (46:23)

We can do better.

Scott Benner (46:24)

No one's going to. They

Lisa (46:25)

could. To me. Me and my girl, we're we're gonna be we're we're gently pushing because we don't wanna get fired. We're gently pushing from inside. Like, this is what we could do.

Like and and in schools, think of, oh, this is, you know, not diabetes related, but this is awful too. Like, think about have you ever heard of stop the bleed training?

Scott Benner (46:45)

The what? Oh, god. Wait. Stop the bleed training?

Lisa (46:49)

Yeah.

Scott Benner (46:49)

What's it got something to do with pressure and tourniquets?

Lisa (46:52)

Exactly.

Scott Benner (46:53)

Yeah. I need I don't need that. I got common sense. But go ahead. What do got?

Lisa (46:56)

There we go. But think about, god forbid, school shootings, like, things like that. Like, again, like, just basic little things that, like you know, just making sure again, no one's gonna be comfortable in that situation. Right? Like, Like,

Scott Benner (47:12)

gonna be comfortable, you're saying.

Lisa (47:14)

Exactly. Yeah. Just give them a basic just give them a foundation.

Scott Benner (47:17)

Are you telling me that school nurses don't have stop the bleed training?

Lisa (47:20)

Not all of them.

Scott Benner (47:21)

Okay. Well, I'm gonna tell you that I think once the shooting starts, you're not I mean, it's not a it's not a field tested, you know, battle ready medic out there. Like, you're gonna get what you get out of people.

Lisa (47:33)

Exactly.

Scott Benner (47:34)

I do think that there's something to that, by the way, that it's nice to plan. And I'm not saying you shouldn't have some some Right. Basic knowledge. Like, I I think that's a great idea because maybe when the panic hits, you'll remember something and do it. Right.

I mean, even there's a where what the Yankee game the other day? It's like the beginning of the baseball season. Some guy has like a MI at a at a game.

Lisa (47:55)

Right.

Scott Benner (47:55)

And this dude comes over, and they're looking at him, this guy's gonna die. And this dude comes over and just starts doing CPR on him. Right. Well, guess what? Motherfucker never did CPR in his life.

He didn't know what the hell he was doing, but he kept him yeah. He kept him alive till the rescue squad got there. Right? That's so cute. The yeah.

And then the great story is is, like, he literally does chest compressions on the guy till till EMS comes, hands him off. He goes back to his seat, sits back down, starts watching the game again. People watched him afterwards in a world apparently where everybody wants to be on camera or do something. He watched the game, clap for the game. The game ended.

He stood up and walked out of the stadium. Aw. He wasn't looking for anybody or nothing. See. But my yeah.

But see, my point is is that when push comes to shove Yeah. Some people are gonna have it and some people aren't.

Lisa (48:41)

100%.

Scott Benner (48:42)

And you can and by the way, I don't I I've never heard the word stop the bleed before in my entire life. But if you get shot near me and I don't flip out Right. I guarantee you, I'm gonna put pressure on the wound.

Lisa (48:55)

You're gonna press

Scott Benner (48:55)

down can't stop it, I'll tourniquet because I've seen Grey's Anatomy and I lived through ER on that old. Okay? So I've seen

Lisa (49:03)

watch The Pit.

Scott Benner (49:04)

You know what? And I watched The Pit. I've been through three major medical television shows in a lifetime. I guarantee you, if I don't cry or shit myself during the shooting that you're describing, I am gonna be valuable. But and no one's ever told me how to stop the bleed.

I also bet you that in that same situation, there are gonna be people who have stopped the bleed training who pee themselves and cry in the

Lisa (49:28)

corner. Right. 100%.

Scott Benner (49:29)

What are we prepping for? Right?

Lisa (49:31)

Right.

Scott Benner (49:31)

That's all. Let me you'd be much better off if you didn't eat ultra processed foods and went for a walk than worrying about this stuff.

Lisa (49:38)

Look. True

Scott Benner (49:38)

story. Make too much sense today. I feel like

Lisa (49:42)

I gotta start it. In common,

Scott Benner (49:44)

Scott. Come on now. Church. Don't you think I'd be great? I think once you wind me up, it doesn't really matter what you say in church is what I've noticed.

So Oh. You just start talking in a direction and, like, being loud once in a while. It really works.

Lisa (49:57)

No. It's therapeutic.

Scott Benner (49:59)

I mean, I think I'm good at it. Yeah. I would

Lisa (50:03)

think so. How many followers? I'm just

Scott Benner (50:04)

not tall enough. That really does slow me. Actually, I feel like I could be the governor of a major state if I was taller. But without the height and the handsome, you're not pulling it off.

Lisa (50:14)

Just get some, like you know, those chunky soled shoes. You'll be alright.

Scott Benner (50:17)

You want me to Tom Cruise the whole thing? That's not a reason walking around he's walking around in cinder blocks. I'll tell you that right now. I saw him on a red carpet the other day. I was like, why is he the same height as that person he's standing next to?

I know that ain't right. Yeah. Yeah. I don't have the looks for the height for that.

Lisa (50:36)

Oh, stop. I don't Well, you have kind of the hair, though. Right? You do great hair.

Scott Benner (50:40)

I have to tell you. My hair is fantastic. Actually, I just did a, I'm finally allowed to talk about this. I did some social media for Omnipod. Yes.

And it went up yesterday.

Lisa (50:50)

Yeah. I saw it. Yeah.

Scott Benner (50:51)

And listen. If you didn't like, comment, and share, I don't wanna hear from you. Okay? I got need know I did. I need to move it around.

But but it popped on. Like, I had to settle up, and there's things I had to do behind the scenes with the video. Right? And it it's weird when a video starts playing and it's you. I'm not gonna lie to Like, it's strange.

But as it was playing in the background, like, you know when you're setting up stuff on Instagram and the audio is just playing, you're like, shut up so I can finish this. Like right? Well, just imagine it's my own voice. And Oh my god. But I did stop at the end.

And I, I texted the person that I that I, you know, kinda spearheaded the production of the videos with. And I said to her, was like, you know, this is gonna sound weird coming from me, but I do have a really great voice for this stuff.

Lisa (51:35)

Wait. No. I'm telling you, like, those in those, like, beginning, like, weeks and days, like, this is gonna sound so creepy, but, like, yours and Jenny's voices were just, my comfort. No. I'm glad.

Scott Benner (51:51)

Oh, that's wonderful.

Lisa (51:52)

Sounds so weird, but No.

Scott Benner (51:53)

No. I appreciate that. And I and I seriously, I I that means a lot to me. I'm just saying I have a nice deep voice network in the video. And it it's the only thing it struck me about besides the fact that I knew I was wearing makeup.

So I was like,

Lisa (52:07)

Oh my god.

Scott Benner (52:08)

Felt a little weird.

Lisa (52:08)

I know your shave was perfect that day.

Scott Benner (52:10)

I was very well shaved that morning. Yeah. Yeah. Yeah. Like a baby's butt.

But but I got the they you know, the you get there and the makeup person, like, you know, does your makeup and everything, and you're like, oh my god. Like, actually, Arden did a bunch of stuff for them that day too. So you'll see some Oh, good. You'll see some stuff from Arden, but Arden didn't like her hair. So she got done with it, and and my wife's like, how did it go?

And she's like, my hair looks terrible. Aw. And and Kelly's like, didn't you say something? She's because the makeup lady did it. I didn't care.

And I was like

Lisa (52:40)

Yeah. She's like, I didn't care much.

Scott Benner (52:42)

But I had to tell you, we all have to mature into the kind of confidence that Arden has

Lisa (52:49)

Right.

Scott Benner (52:49)

To show up somewhere, have someone style her hair a way that she's not comfortable. And she didn't give a crap. She just went out, stood in front of a camera, did a thing. She'd never done that before in her entire life.

Lisa (52:59)

That's amazing.

Scott Benner (53:00)

The first thing she ever did was what they asked. Like, that's the first job she's ever even had. You know what I mean? Like yeah. And she just stood out.

She's never done that before. She stood in front of all those cameras and, like, on a set with all these lights, and she was just doing the stuff they asked her to do. It's pretty cool. We had a really nice day.

Lisa (53:16)

But that's, like, that's, you know, a testament to, like, what you and your wife have built for her. Yeah. You know?

Scott Benner (53:23)

Don't know about that. Pretty good on her own. I don't think she needs us too much. But and don't tell Omnipod this. Like, I had such a nice time with Art and I would have they didn't Aw.

They didn't even have to pay me. But I will if we do it again and ask for money. Yeah. I just wanna say. So but, no, they came out really and hopefully, they help because I'm seeing from people, they're like, this is good foundational information that I forgot.

Like, I I had a woman tell me yesterday, I use Omnipod five. I know this. It's a thing I forgot, and it's good to be reminded.

Lisa (53:50)

100%.

Scott Benner (53:51)

Yeah.

Lisa (53:51)

Abs it is. It's great. It's just like the high level, like, snapshot and definitely good reminders.

Scott Benner (53:58)

And it's hard to it's you know, I I sent this per I don't wanna say her name here because Yeah. She's not looking for that. But, like, the person who I, again, like, did this work with, I texted her yesterday because I was really pleased with it and how people were responding to it. And I think it's really important to remind people over and over again. And, you know, you can come to the conclusion that, like, well, it's foundational information.

Like, we we already said it. Like, we can't say it again. And I said, I think of it the same I think it the opposite way. I was like, you should be saying this constantly.

Lisa (54:26)

Right. Right.

Scott Benner (54:27)

Always new people showing up. Always new people diagnosed, always people forgetting. It's really valuable to to repeat this stuff for people.

Lisa (54:35)

Absolutely. Yeah. And it does. Like, I like what you said about forgetting because there's so many there's, like, a billion things going on, and it could be like that one little, like, oh, crap. Yeah.

I could do that.

Scott Benner (54:46)

You know? Happens to me.

Lisa (54:48)

All the time.

Scott Benner (54:49)

Yeah. Like, I it happened to me. I mean, yesterday, Art like, you know, you guys know if you're listening pretty consistently, Arden has a pretty significant needle phobia. So there are times when she just can't bring herself to give herself for GLP medication. Mhmm.

And, you know, she'll do it for weeks in a row and everything's great, but then sometimes she's like, oh, I can't like, she just can't bring herself to do it, and she starts to put it off. And once you put it off, it kinda it it don't stretch into weeks. You know? And she did it again recently. And I said, hey.

You're gonna have to change settings, you know, but we're gonna have to change them again in a few days and take down insulin to carb ratio, make it weaker. You're gonna have to make basal weaker. You're gonna have to make instant sensitivity weaker, like, all this stuff. And all day yesterday, I was like, why does she keep getting low? I mean, like, she just shot that med, like, four days ago, and I know what's going on.

And trust me, if you ask me, I can explain it to you pretty well. And I forgot, like, thirty, like, six hours throughout the day, like, it didn't occur to me until finally, I, like, smacked myself in the head. And I walked into her, I was like, what's going on? She's like, I'm low. And I'm like, yeah.

I'm like, your settings are all wrong.

Lisa (55:56)

Right.

Scott Benner (55:56)

Because you took the GLP, so we put them back. She slept overnight. Perfect blood sugar.

Lisa (56:01)

See? Yeah. Because life happens. Right?

Scott Benner (56:02)

That's exactly right. And so, anyway, there's a ton of value in repeating things that might seem basic to you. I would give that message to people in the Facebook group too who can sometimes get frustrated like, oh, this question's been asked already. You don't wanna stop. You let people ask those questions as many times as they want.

You know? Absolutely. Yeah. Yeah. Anyway, what have we not talked about, not done?

What have we missing? I wanna make sure we don't, like, pivot too far away from things you want to do. Anything at all? No.

Lisa (56:30)

I think we talked about we talked about the beginning. We talked about school nursing. We talked a little bit about diabetes camp.

Scott Benner (56:37)

Yeah. No. You're doing good.

Lisa (56:39)

Hit a lot.

Scott Benner (56:39)

So what do you see for the future here? Like, what are your goals for your son in the in the interim? These next couple of years, like, where are you hoping for him to get to with the diabetes?

Lisa (56:52)

You know what? He already wants to be, like, very independent with it, and we just keep building on that. When we were at Camp Freedom last summer, he changed, like, his pod himself for the first time. I mean, at that point, November, December, January, February, March, April, May, June. He was only a diabetic for eight months at that point.

I just I want him to keep that spirit of just, you know, rolling with it, you know, independence. He loves, like, he loves him and his brother both actually love teaching people about it. So just getting yeah. Like, keeping that momentum and you know? Of course, he's he's still seven.

So, of course, he gets, like, upset sometimes and especially if we have to take a little break of, you know, whatever activity because he's low. But we signed up for the triathlon the district's having, and I just want him I wanna make sure we lay the foundation for him that he knows. You know?

Scott Benner (57:52)

He can do it.

Lisa (57:52)

He can do whatever the heck he wants. You know? This is just something that's part of him that, you know, we have to continue to address, but it's not gonna stop him. Right. You know?

Scott Benner (58:03)

You said in the beginning when you realized he had type one, you went upstairs and cried for a minute. Have you cried since then? How do you manage the anxiety and the stress of

Lisa (58:11)

the COVID? Scott, I had a full blown panic attack for the first time in my life.

Scott Benner (58:16)

Did you?

Lisa (58:17)

Oh, I'm not even kidding. It was, like, six months after he was diagnosed. So and it was the stupidest thing that triggered it because at that point, he was on injections. He was, like, high, but not crazy high. And I didn't know if I should send him to school or wait a couple minutes and talk to chop.

Like and it was all right about when school was starting. It's like, I went through everything. He went to school. Everything was fine. And I was getting fingerprinting done because I was actually gonna be starting at the school.

And I started getting, like, real trembly, and I'm like, what is wrong with me? And I got home, and I just lost it. I called well, talking about neighbors. I called my my neighbor, Nikki, and I was, like, crying. I'm like, I feel like the world's closing in on me.

Like, it was I like, I when people come into the ER with panic attacks, like like, I now, like, understand what that's like. You feel like you're dying, and it was all triggered because I just I was like, do I do I send him late to school? Do I keep him? Like, it was stupid. It's not even like my kid, like, had, like, a seizure or, like it was, like, the most stupidest thing that triggered it.

Scott Benner (59:31)

So Just just worried.

Lisa (59:32)

That's what Lexapro's for, Scott. So life's been great since.

Scott Benner (59:35)

I like to point out to the producers of the HBO series, Task, which I did enjoy, that we, where you just did you know, you heard Lisa say home just a second ago. And sure sure, she went home a little bit when she said it, but it wasn't the way you got everybody on the TV show. And that would you remember Kate Winslet one where she was like, she'd run around every six minutes? She'd going like, I gotta go home. And I'm like, we don't talk like that.

You were ruining it. I like Kate Winslet. And every time she went home, I'm like, come on. That's a little too much. Oh my god.

That's sad. They did it in task too. It's almost like they're, like, right home into the script every three moments so we know we're in the Wissahickon area.

Lisa (1:00:15)

Right. Right.

Scott Benner (1:00:16)

Which, by the way, is a word, like, most people are not gonna understand.

Lisa (1:00:19)

Right. Right.

Genetics & The Klinefelter's Twist

Scott Benner (1:00:20)

Another question apropos of almost nothing. How disappointed or let's say heartbroken was your husband when the boys were twins and he couldn't call one of them Anthony Junior?

Lisa (1:00:30)

Wait. Okay. So real quick. So we initially because I'm, like, older and it was multigestational.

Scott Benner (1:00:38)

Yeah. Did that come the old fashioned way, or did you guys do a insemination? Or

Lisa (1:00:42)

So just FYI. So women over I forget if she said it was 30 or 35. We drop we start dropping eggs like crazy. So the chances of naturally

Scott Benner (1:00:53)

bunny. Your uterus is there just like, I don't know how many she needs.

Lisa (1:00:58)

Dropping. They're coming. They're coming hardcore. Right? And, yeah.

So that that was it. Naturally occurring because of, you know, being old. So they told us we were having a boy and a girl. It turned out we went for our first anatomy scan, and clear as day, Scott, there was two penises. Like, even me who can't read a a ultrasound.

I'm

Scott Benner (1:01:22)

like I see. My gosh. Yeah.

Lisa (1:01:23)

So the blood test was wrong. And what ended up what we found out was so they asked us, the company said, can you send cord blood after the boys are born so we can figure out why our test was wrong? Hence, we found out his twin has Klinefelters. So traditionally, they just read two chromosomes, so XX or XY. So they thought maybe they read my DNA in it, but it turned out Jason is XXY.

So What

Scott Benner (1:01:56)

does that

Lisa (1:01:57)

of that, now they read three chromosomes over.

Scott Benner (1:01:59)

Oh, you guys fixed the test.

Lisa (1:02:01)

Yeah. Hopefully.

Scott Benner (1:02:02)

Yeah. The now it's called the Jason test. But, like, wait wait sorry. Wait. What how what does that mean?

The whatever you said he has. Klinefelters. Yeah. What is that?

Lisa (1:02:11)

So, essentially, you know, like, normally, your x x or your x y. Your x y if you're a boy, your x x if you're a girl. So Klinefelters is when you have an extra x chromosome. So it varies in severity. Like, the more you have, like, if you had, like, three or four, like, there can be some more, like, serious issues.

Scott Benner (1:02:32)

Okay.

Lisa (1:02:33)

But for Jason, the only thing he has, which it doesn't ever stop him, is, like, a little bit of a low muscle tone.

Scott Benner (1:02:41)

Okay.

Lisa (1:02:41)

But later in life, there could be some challenges, like, you know, reproductively. So we're actually part of a study at Nemours called the x x y study. They just do they check his hormones, like, once a year just to make sure. So when he does start going through puberty, if he needed a little extra of whatever, he could get it. But just because there's so many, like, older people having babies now, it's kind of coming up a little more frequently than it used to

Scott Benner (1:03:11)

back in

Lisa (1:03:12)

the day.

Scott Benner (1:03:12)

But it's incredibly interesting. I'm I'm glad we touched on that. I do wonder, though, was I right about the Anthony junior thing, though? Like

Lisa (1:03:19)

No. 100% because we were supposed to have a junior, Scott.

Scott Benner (1:03:22)

I mean So now are Italian. You're from Philly. You would definitely call that kid Anthony junior. Yeah. Yeah.

Yeah.

Lisa (1:03:28)

So we split it, and I don't care. I'll say the name. So we have Anthony, and we have Gson. So yeah.

Scott Benner (1:03:33)

But you didn't you couldn't make him a junior, though. Right? Or did you?

Lisa (1:03:36)

No. Because we didn't want the other one to have, like, lifelong, well, why wasn't I a junior?

Scott Benner (1:03:40)

Yeah. It's definitely because the Klein Schloppers. That's why they didn't pick me. That's our whatever. Klein touchers, feelers.

Lisa (1:03:46)

That's alright.

Scott Benner (1:03:47)

Yeah. Yeah. I'm not gonna remember exactly. Well, I'm just very impressed with myself that I knew for sure you wanted to name one of those kids, Anthony. No.

That's not in any of the notes. Just want everyone to know that I was all over that. There's no way that that wasn't what's going on. Listen. You know, you younger people, you think that generalizing is bad and it's rude.

I'm telling you. It's a quick way to get to the answer.

Lisa (1:04:08)

That's right.

Scott Benner (1:04:09)

You know? Yeah. Everyone doesn't follow the same pattern, but a lot of us do.

Lisa (1:04:13)

Yep. Yep.

Scott Benner (1:04:14)

That's pretty much it. We learned a lot in this episode. I'm definitely calling this episode you're never gonna guess, actually.

Lisa (1:04:20)

Oh, I I can't even imagine.

Scott Benner (1:04:22)

I wanted Mother Doom, but it just didn't go far enough. And you said it way too early in the episode. You said something after that that I really liked, but I forgot what it was, so I must not have liked it that much. I'm definitely calling this one drunk bunny in because of your fallopian tubes just throwing those eggs all over the place.

Lisa (1:04:38)

That's the best.

Scott Benner (1:04:39)

That's it.

Lisa (1:04:39)

It's called

Scott Benner (1:04:40)

drunk drunk bunny. That's what I'm doing.

Lisa (1:04:42)

I love it. I love it.

Scott Benner (1:04:45)

I hope that right now, people who listened all the way through are like, what a rip off. And by the way, if you did, I got you suckers. You're still here. Okay. So

Lisa (1:04:55)

That's great.

Scott Benner (1:04:55)

Anyway, it's a good conversation. I appreciate this.

Lisa (1:04:57)

No. Thank you. Thank you so much for having me.

Scott Benner (1:04:59)

Yeah. Tell all the people how the Phillies are letting us down right now in the beginning of the season. Just in case we'll mark this as a time capsule. It's very upsetting. Explain be serious for a second because you work in the ER.

Uh-huh. If this is something you're aware of, if it's not, you just say, Scott, this is the end of the conversation. I have no idea what you're talking about right now. But talk about what you see in the mood of the city when the sports teams do better versus when they don't do as well.

Lisa (1:05:26)

So it's so okay. It's not so much as to how they're doing, but the timing of games. Right?

Scott Benner (1:05:32)

Okay.

Lisa (1:05:33)

So what happens is, you know, especially the men, no offense, but I am clumping you together. Yeah.

Scott Benner (1:05:39)

That's fine.

Lisa (1:05:39)

Y'all need to get in before the game. Right? Oh, I'm having chest pain. Let me make sure, but I have to be out. I need all these I need everything grand.

I need to be out by 01:00 when the game starts.

Scott Benner (1:05:52)

People ask you to push their labs up because they gotta go watch the Phillies.

Lisa (1:05:55)

Oh, well, what how long am I gonna be here? The game's on. Or after the fact, after the game too. I've had chest pains since before the game started.

Scott Benner (1:06:06)

But the eagles were tied in the third quarter. I didn't wanna leave the house.

Lisa (1:06:09)

But and it's the same thing. It's it's not only the games, but sometimes, not so much now. But, like, there used to be a time where it would be dead during the game. You know?

Scott Benner (1:06:20)

Yeah. Yeah.

Lisa (1:06:21)

But same thing with holidays. Everybody waits till afterwards.

Scott Benner (1:06:25)

You ever go to a grocery store during a football game and there's just women walking around?

Lisa (1:06:28)

It's amazing.

Scott Benner (1:06:29)

That's the

Lisa (1:06:30)

best time to go. Yeah. Senior citizen day, whatever. Right.

Scott Benner (1:06:32)

You don't mind getting hit by a cart.

Scott Benner (1:06:34)

I don't mind that. That's so much. But you don't see anything where, like, violence, goes down when sports teams are doing better? Like, No. No.

It's not a thing you see on your level.

Lisa (1:06:47)

Okay? Alcohol on board, they don't need to win or lose. People just do silly things and yeah.

Scott Benner (1:06:54)

Well, that kid fell off that light pole and died last year.

Lisa (1:06:56)

That was awful. Yeah. Was awful.

Scott Benner (1:06:59)

They greased the light poles to keep them off, and that kid still got up there.

Lisa (1:07:03)

Not a yeah.

Scott Benner (1:07:04)

Yeah. I

Lisa (1:07:04)

mean, when you're young. Right?

Scott Benner (1:07:05)

Let's let's listen. We'll end this with a PSA. If you're drunk, the last place you wanna be is 50 feet in the air on a greasy pole. Okay? It's just not a good idea.

Alright. We've gone over a lot of things today. Thank you very much for doing this. I really do appreciate it. Hold on one second for me.

I'm gonna tell you a couple things after we're done recording.

Lisa (1:07:24)

Alright.

Scott Benner (1:07:24)

See you.

Outro & Sponsors

Scott Benner (1:07:31)

US Med sponsored this episode of the Juice Box podcast. Check them out at usmed.com/juicebox or by calling (888) 721-1514. Get your free benefits check and get started today with US Med.

A huge thanks to my longest sponsor, Omnipod. Check out the Omnipod five now with my link, omnipod.com/juicebox. You may be eligible for a free starter kit, a free Omnipod five starter kit at my link. Go check it out. Omnipod.com/juicebox.

Terms and conditions apply. Full terms and conditions can be found at omnipod.com/juicebox. Okay. Well, here we are at the end of the episode. You're still with me?

Thank you. I really do appreciate that. What else could you do for me? Why don't you tell a friend about the show or leave a five star review? Maybe you could make sure you're following or subscribed in your podcast app, go to YouTube and follow me, or Instagram, TikTok.

Oh, gosh. Here's one. Make sure you're following the podcast in the private Facebook group as well as the public Facebook page. You don't wanna miss please, do you not know about the private group? You have to join the private group.

As of this recording, it has 74,000 members. They're active talking about diabetes. Whatever you need to know, there's a conversation happening in there right now. And I'm there all the time. Tag me.

I'll say hi. Alright. Let's get down to it. You want the management stuff from the podcast. You don't care about all this chitting and chatting with other people.

Juiceboxpodcast.com/lists. They are downloadable, easy to read. Every series, every episode, they're all numbered. Makes it super simple for you to go right into that search feature. In your audio app, type juice box one seven nine five to find episode one seven nine five.

Juiceboxpodcast.com/lists. The episode you just heard was professionally edited by Wrong Way Recording. Wrongwayrecording.com.

READ FULL TRANSCRIPT

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#1877 Agency and Anxiety Part 2

Therapist Erika Forsyth returns to explain the difference between autonomy and agency. Learn how small, consistent actions in your diabetes management compound over time to reduce anxiety and shame.

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Key Takeaways

• Agency vs. Autonomy: Autonomy is the freedom to act without constraints, while agency is the ability to skillfully operate and affect outcomes within existing constraints (like a diabetes diagnosis).
• The Anxiety Response: When agency feels low—when you feel like your body is failing you regardless of your actions—anxiety spikes, often leading to either hyper-vigilance (over-correcting) or total avoidance.
• Building Agency Through Knowledge: Time and experience are the ultimate builders of agency. As you learn patterns and see how your actions positively influence outcomes, your anxiety naturally decreases.
• The Compound Effect of Effort: Much like folding a piece of paper 42 times to reach the moon, small, consistent, good decisions in diabetes management compound over time to create massive positive results.
• Shame Reduction: As your agency grows, you stop viewing out-of-range numbers as personal failures or indicators of your self-worth, and start viewing them simply as data and information to act upon.

Resources Mentioned

• Touched by Type 1: touchedbytype1.org
• Tandem Mobi System: tandemdiabetes.com/juicebox
• Eversense 365: eversensecgm.com/juicebox
• Juice Box Podcast Pro Tip Series: juiceboxpodcast.com
• Wrong Way Recording: wrongwayrecording.com

FULL EPISODE TRANSCRIPT

Introduction & Show Sponsors

Scott Benner (0:00)

Hello, friends, and welcome back to another episode of the Juice Box podcast. Diabetes can make it feel like your body is just happening to you, and that's where a lot of the anxiety lives. But as your skills grow, something changes. You start to see that what you do actually moves the needle. This episode is about that shift from feeling out of control to knowing you can respond.

Scott Benner (0:33)

If your loved one is newly diagnosed with type one diabetes and you're seeking a clear practical perspective, check out the Bold Beginnings series on the Juice Box podcast. It's hosted by myself and Jenny Smith, an experienced diabetes educator with over thirty five years of personal insight into type one. Our series cuts through the medical jargon and delivers straightforward answers to your most pressing questions. You'll gain insight from real patients and caregivers and find practical advice to help you confidently navigate life with type one. You can start your journey informed and empowered with the Juice Box Podcast.

Scott Benner (1:07)

The bold beginning series and all of the collections in the Juice Box podcast are available in your audio app and at juiceboxpodcast.com in the menu. 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.

The episode you're about to listen to was sponsored by Touched by Type One. Go check them out right now on Facebook, Instagram, and, of course, at touchedbytype1.org. Check out that programs tab when you get to the website to see all the great things that they're doing for people living with type one diabetes. Touched bytype1.org.

The podcast is also sponsored today by the Tandem Mobi system, which is powered by Tandem's newest algorithm, Control IQ Plus technology. Tandem Mobi has a predictive algorithm that helps prevent highs and lows and is now available for ages two and up. Learn more and get started today at tandemdiabetes.com/juicebox.

Scott Benner (2:12)

Today's episode is also sponsored by the Eversense three sixty five. The Eversense three sixty five has exceptional accuracy over one year and is the most accurate CGM in the low range that you can get. Eversensecgm.com/juicebox.

Agency vs. Autonomy

Scott Benner (2:29)

Erica, we are back doing agency and anxiety part two. Just a two part little quick series. Right?

Erika Forsyth (2:35)

I think so. I think it might be just a two parter. Okay. But we'll see.

Scott Benner (2:38)

Where where where do you wanna start? I wanna get you right back into your conversation. So

Erika Forsyth (2:42)

Okay.

Scott Benner (2:42)

What do what do you wanna do?

Erika Forsyth (2:44)

So thank you. I would like for us to first kind of just review agency and the definition. And as I was thinking about our conversation from, the first episode, I wasn't sure if we actually defined a differentiated agency versus autonomy.

Scott Benner (3:02)

Okay.

Erika Forsyth (3:03)

So I thought we could do that first and then talk about the kind of interplay between agency and anxiety and how agency may amplify or buffer anxiety when living with diabetes.

Scott Benner (3:15)

Let's do it.

Erika Forsyth (3:16)

So okay. So first, you know, I know we were as we were trying to define agency in the prior episode, it was we realized it was it's difficult. You know, you kind of have a an a felt knowledge of what it means, basically, that you can affect and influence outcomes, and you have the power and the capacity to do so. You can affect change in your life, but it's within kind of constraints and limitations. And that is different from autonomy where you have the freedom to act according to your own rules, your own desires, and you aren't feeling or experiencing those external control or outer, you know, constraints.

Erika Forsyth (4:01)

So I like the kind of to think about agency is about how you operate within constraints, and autonomy is about where you operate in the absence of constraints.

Scott Benner (4:13)

One example, I don't know

Erika Forsyth (4:15)

if it's just perfect, is autonomy. If you're if you're playing a game, autonomy, like a board game, let's say Mhmm. You might have the power to change the rules of the game using your autonomy. But agency is the ability to skillfully win within the existing rules. So you have these kind of constraints and boundaries, and you're making choices that will affect an outcome that you are hoping for.

Erika Forsyth (4:45)

But autonomy is like, well, I don't like this these rules, and I have the independence and freedom to change them so then I can affect change or feel independent in my life.

Scott Benner (4:56)

Yeah. I'm

Erika Forsyth (4:56)

following up. It's not it's not a perfect example.

Scott Benner (4:59)

No. But I I'm following what you're saying. There's some situations you're in that you can change, effectuate, get out of, and there's some that you're in that are are concrete. They're not gonna change, but you can still exist within them when you use agency for, when you use autonomy for. Yes.

Scott Benner (5:15)

Is that right?

Erika Forsyth (5:15)

Yes. I think that's that's good general ex you know, reflection.

The Anxious Response: Avoidance vs. Hypervigilance

Scott Benner (5:20)

Okay.

Erika Forsyth (5:20)

So when we are thinking about getting diagnosed with diabetes, one of the first things you experience is the person who is diagnosed and and the caregiver and the family system as a whole is that loss of autonomy. Right? Because you feel like the the life you once knew, the freedom to, you know, intuitively eat whenever you want you know, all of the examples we can think of, that is immediately lost, and you feel out of control. So that that is autonomy. That's a loss of autonomy in that in the original diagnosis and probably also agency.

Erika Forsyth (5:59)

But loss of agency is experienced at a diagnosis or stages of change or probably anytime you feel like you're you've thought you can affect an outcome, and it is not what you expected. So when you, you know, you leave your your doctor's office or the hospital, you have your insulin to carb ratios, you have your your target number. But when you in the beginning and, again, it's stages of change or or stages of burnout. When you anticipate doing a or x, you don't always get y. Mhmm.

Erika Forsyth (6:35)

Right? So you might get a, b, or c, and that might be as the honeymoon or growth hormones, etcetera. So the system and the procedures and the and the outcomes that you are expecting feel really unpredictable, and in anxiety will increase because the consequences feel immediate.

Speaker 3 (6:57)

Mhmm.

Erika Forsyth (6:58)

So we're gonna get into kind of now this interplay between when agency is low, anxiety is high and vice versa. But I'll I'll pause there.

Scott Benner (7:08)

Okay. When agency is low, anxiety is high. And when you think about it on the the scale of diabetes, you don't have any autonomy to change diabetes. Right? But you have some to change, what, your own actions?

Scott Benner (7:22)

Or maybe I should just let you move on before I ask my question.

Erika Forsyth (7:29)

Yes. So we'll get there how autonomy is kind of reintroduced.

Scott Benner (7:33)

That's okay. I'm gonna wait and and and Okay. And get myself more fully formed before I talk.

Erika Forsyth (7:37)

Okay.

Scott Benner (7:37)

Go ahead.

Erika Forsyth (7:38)

So in again, I I know I often say in the beginning, but we, you might feel this way at any point in your life's time with with diabetes or from the caregiver's perspective that your the outcomes feel externally driven, and you might experience this, you know, feeling that my body's unpredictable. Whatever I do, I I don't it doesn't happen the way I expect. And this kind of coincides or correlates to the messaging of the perceived body betrayal that we talked about in the body grief series. Right? That feeling of, like, my body failed me no matter what.

Erika Forsyth (8:17)

It's it's has totally abandoned me. Mhmm. And every fluctuation can be interpreted as failure or danger. Right? So that's when your your lid is flipped, like we talked about.

Erika Forsyth (8:31)

You are experiencing every single blood sugar decision. And as you're eating or navigating any of the variables, you might experience that that feeling of of failure or danger. And it actually might right? It might be dangerous. You might be high or low.

Erika Forsyth (8:48)

Okay. So your nervous system is interpreting this as, you know, you're you're you're offline, and you're but you're leaning towards this vigilance and threat monitoring. So this is why when the agency is low, right, you're feeling like you cannot affect outcomes or influence outcomes. Anxiety is high. So as a result, you're this is when you might feel the anxious symptoms.

Scott Benner (9:17)

Mhmm.

Erika Forsyth (9:18)

And to try and regain a sense of control, what often occurs is kind of that hypervigilance. I'm gonna try and, you know, just stare at the numbers. I'm gonna finger prick 20 times, and I'm I'm gonna figure this out.

Scott Benner (9:34)

Does that actually work, though?

Erika Forsyth (9:37)

Right. No. No. Yeah. But but it feels like you're doing something.

Scott Benner (9:43)

Right.

Erika Forsyth (9:43)

Right? So it's your body's response to saying, I am feeling so dysregulated no matter what I do isn't working. Mhmm. You you kind of often will do two things. Right?

Erika Forsyth (9:54)

You you might lean into the hypervigilance and kind of over control or the avoidance, like, kind of hands in the air. No matter what I do, it is not working.

Speaker 3 (10:06)

Mhmm.

Erika Forsyth (10:06)

And I kind of helpless.

Speaker 3 (10:09)

Yeah. Right?

Scott Benner (10:10)

Both of those decisions, oddly enough, kinda lead to the same place. You you know? Because you the hypervigilance usually usually I mean, some people figure it out, but some but a lot of people end up in a situation where they're staring at it so long and so hard and they're so exhausted, can't make any sense of it anyway. They're still having the outcomes they don't want. And the people who let it go maybe experience a slightly higher a one c or a little more variability, but they don't end up on you know, you can't wish yourself into success either, which is like, I'll throw it up to God and let's see what happens next because what's gonna happen next is your blood sugar is gonna get high.

Scott Benner (10:46)

Okay. Alright. I got that. I'm

Speaker 3 (10:48)

I'm ready.

Sponsorship Break

Scott Benner (10:50)

When you think of a CGM and all the good that it brings in your life, is the first thing you think about, I love that I have to change it all the time. I love the warm up period every time I have to change it. I love that when I bump into a doorframe, sometimes it gets ripped off. I love that the adhesive kinda gets mushy sometimes when I sweat and falls off. No.

Scott Benner (11:09)

These are not the things that you love about a CGM. Today's episode of the Juice Box podcast is sponsored by the Eversense three sixty five, the only CGM that you only have to put on once a year and the only CGM that won't give you any of those problems. The Eversense three sixty five is the only one year CGM designed to minimize device frustration. It has exceptional accuracy for one year with almost no false alarms from compression lows while you're sleeping. You can manage your diabetes instead of your CGM with the Eversense three sixty five.

Scott Benner (11:43)

Learn more and get started today at eversincecgm.com/juicebox. One year, one CGM.

Scott Benner (11:52)

Let's talk about the Tandem Mobi insulin pump from today's sponsor, Tandem Diabetes Care. Their newest algorithm, Control IQ Plus technology and the new Tandem Mobi pump offer you unique opportunities to have better control. It's the only system with auto bolus that helps with missed meals and preventing hyperglycemia, the only system with a dedicated sleep setting, and the only system with off or on body wear options.

Scott Benner (12:18)

Tandem Mobi gives you more discretion, freedom, and options for how to manage your diabetes. This is their best algorithm ever, and they'd like you to check it out at tandemdiabetes.com/juicebox. When you get to my link, you're going to see integrations with Dexcom sensors and a ton of other information that's gonna help you learn about Tandem's tiny pump that's big on control. Tandemdiabetes.com/juicebox. The Tandem Mobi system is available for people ages two and up who want an automated delivery system to help them sleep better, wake up in range, and address high blood sugars with auto bolus.

Building Agency Over Time

Erika Forsyth (12:58)

So that is how sometimes it kind of the the low agency might amplify the failing experience of anxiety, and then the result is that either avoidance or hypervigilance. These are obviously stereotypes, but these are these are the trends, right, that we might experience. So how how does agency increase with diabetes? So over time, you you know, as skills and knowledge and understanding develop, we expect that that belief in oneself and that feeling that I can affect change, the agency will grow Mhmm. Within you.

Erika Forsyth (13:35)

Right? As you start to recognize patterns, you learn maybe your insulin to carb ratios better. You're you're more aware of how the variables might impact your blood glucose levels, and that's where agency can become a protective factor. Even within uncertainty, you have an increased understanding in in kind of how you can predict outcomes. You can see how your change your actions change outcomes even though it might not be perfect all the time.

Erika Forsyth (14:08)

Mhmm. Because your anxiety or the anxious thoughts or feelings are starting to be reduced even though it's not you know, you might get you're not gonna nail it every time.

Scott Benner (14:19)

Right.

Erika Forsyth (14:19)

Right? Okay. So your behavior becomes more intentional with that. So you are more mindful with the increased time and knowledge. Right?

Erika Forsyth (14:31)

I know we always talk about, like, diabetes is a time. It's a chronic illness that you do learn and grow and benefit from time. Mhmm. And knowledge, right, and experience. So this is actually just wanted to share a quick story.

Erika Forsyth (14:47)

I was recently at a a meetup for for grown ups living with t one d, and we were playing a game. And one of the questions was, what's a sign or symptom that you have been living with diabetes for a long time? And there were some some funny ones, you know, like, you have you know, your your storage closet is packed full of all of your stuff. There might be some hard what hard answers, like, might be living with some complications. But the one person who yelled out the word knowledge

Speaker 3 (15:22)

Mhmm.

Erika Forsyth (15:22)

Everyone just kind of took this we all kind of took a big breath and and then laughed. Like, it is so true that it does come. Time and experience does yield knowledge, but you don't have to wait Yeah. For years and years and years.

Scott Benner (15:39)

If you just make your way through almost blindly, you will amass that knowledge over time. Like, you just end up having so many experiences. It's almost impossible to ignore, you know, what you're learning at some point. But it's nice if somebody steps in and gives you more and gets you sped up because that loss of time eventually weighs on people. And especially if there's complications, then you start thinking about like, well, now I know it, but if I would've known it before, then this might not happen and that can come with its own set of consequences for you psychologically afterwards, after that all kinda comes together.

Scott Benner (16:12)

But that's interesting that in that setting that everybody kind of, like, wholly agreed. Like, I have learned a lot about this over time. Yeah.

Erika Forsyth (16:19)

Mhmm. Mhmm.

Scott Benner (16:20)

It's a shame it can't be sped up without the time going past. I don't know. Maybe it can be.

Erika Forsyth (16:26)

And and and what is time? Is it six months? Is it Yeah. Six years? Is it you know?

Scott Benner (16:30)

It's different for everybody. That's what I've learned after talking to people. Is that some people jump in, some people are handed tools and ignore them for years or don't understand them for years. Then they hear something or have an experience that makes the whole thing crystallize when they go, oh, I got it now. And it just starts to work in a different way.

Scott Benner (16:47)

And some people I've seen I've seen some people jump in, through bold beginnings, pro tips, six months later, send me a five and a half a one c and go, I understand it. And I'm like, awesome. Like, that's great. And everywhere in between. So

Erika Forsyth (17:01)

Right. And then and what was that that moment for that person that they then were able to digest the education? Were they not in a stage of shock, you know, and and dismissal?

Scott Benner (17:14)

Right.

Erika Forsyth (17:14)

Were they ready to hear it? Like, we don't I think that that is the the human element. Right? Like, at what point does the knowledge help?

Scott Benner (17:23)

Mhmm.

Scott Benner (17:24)

I ask everybody who gets to that point, can you point to what got you there? What did you hear that made sense? And no one ever knows. They they're just always like, I don't know.

Scott Benner (17:35)

Just one day, it all made sense to me. Everybody says the same. Every once in a while, somebody will say, well, I listened to something or I saw something or someone said something to me and it made, like, something click for me. But overall, it's more about like it the I feel like their answer is I just lived in it long enough that I understood it finally. Like, that's what I feel like their answer really means is that I don't know if you were baking a cake and some people have to mix the cake for a minute, some people have to mix the cake for an hour and I don't know.

Scott Benner (18:03)

The cake was just done one day and I figured it out. It's really interesting that the human part of it is is pretty fascinating, especially when you look at all this and you see how you can be held back by something that's sort of outside it feels like it's outside of your control. You can be helped by something that might also be outside of your control. You know, you hear people are like, well, if some people handle situations better than others. And for my ten years of asking people, I can't figure out the difference between one and the other.

Scott Benner (18:29)

You know? That's interesting.

Erika Forsyth (18:31)

It's really something. So I and I'm as you're sharing this, I'm trying to think about, you know, that Free. Moment for me. Yeah. Yeah.

Erika Forsyth (18:38)

Of when did I want to understand? When did I feel you know, experience that agency?

Scott Benner (18:45)

Mhmm.

Erika Forsyth (18:46)

And it is almost an undef like, this nebulous experience that occurs.

Scott Benner (18:54)

Erica, hold your thought for minute. Arden?

Speaker 3 (18:57)

Are you recording?

Scott Benner (18:58)

I'm recording with Erica. What what's up?

Speaker 3 (19:00)

No. I was just gonna call you and tell you, guess what? Me and my class just spent the last forty five minutes of our class doing.

Scott Benner (19:06)

What did you spend the last forty five minutes doing?

Speaker 3 (19:09)

Convincing our professor that it's actually impossible to write five five okay. Five five paragraph essays in our final exam period.

Scott Benner (19:21)

She wants you to write five five paragraph essays during the exam period?

Speaker 3 (19:27)

We're like, that's impossible. We can't do that. And she was like, why not? And this kid is like, well, half of writing an essay is like finding all the materials and figuring out how you're gonna write it. He's like, you want me to three times in my exam period?

Speaker 3 (19:42)

He's like, diet he's like, I could maybe do, like, two. And she was like, this isn't making sense to me. And then I was like, I was like, what if you made it, like, two and then do, like, multiple choice questions or something? And she was like, I'm like, oh my god. She's like, I'll reach out to you guys and tell you what we're gonna do.

Speaker 3 (20:03)

How about you guys will start at five essays?

Scott Benner (20:06)

I don't know. How long is the exam how long is the exam period? How long is the exam period?

Speaker 3 (20:12)

Like, two

Scott Benner (20:13)

and a

Speaker 3 (20:13)

half hours maybe.

Scott Benner (20:14)

I don't know. I mean, that seems like a lot of writing.

Speaker 3 (20:18)

I can't write five essays in a day. I was like, is she fucking serious? Anyways Right. I don't know. I I spoke up.

Speaker 3 (20:26)

I was like, yeah. I I can't do that. So

Scott Benner (20:29)

Well, I'm interested to see what what comes from the conversation. Alright. I'm Yeah. I'm gonna go. Thank you for sharing this with me.

Scott Benner (20:35)

I'll see you in a bit. Bye. Bye. Well, there's agency.

Erika Forsyth (20:42)

And advocacy.

Scott Benner (20:43)

Yeah. A little bit of autonomy. She's like she's like, maybe I can change my situation. I can't do that. I

Erika Forsyth (20:50)

Yes. Actually, that's all three.

Scott Benner (20:52)

Yeah. Yeah. She was like she's like, I don't think I can do that. I'm gonna speak up and also, no. I wonder they'll probably

Erika Forsyth (21:01)

be sound challenging.

Scott Benner (21:02)

Yeah. I mean, five different five paragraph essays in two and a half hours. I don't know. I'd have to think about it. I haven't written that much in a while.

Scott Benner (21:13)

I don't think it would be good. I might be able to hammer out the first pass of it. Yeah. Yeah. Yeah.

Scott Benner (21:17)

I could

Erika Forsyth (21:18)

And how many words are we talking and pages per essay?

Scott Benner (21:22)

I have to tell you though, I know this is off the track and we'll and make sure you have your finger on where we're at. But

Speaker 3 (21:27)

Okay.

Scott Benner (21:27)

It's just like we're talking to doctors. When they ask you something and you go, no. And they go, okay. Like, if the teacher really knew something, then she would have said, nope. It's five essays, five paragraphs each in two and a half hours.

Scott Benner (21:40)

This is the requirement. Do it. But she doesn't even know if that's right. Like, does somebody brought it up to her and she went, oh, maybe it's not easy to do. Like, maybe it's not doable.

Scott Benner (21:51)

And I I don't know. I just I always feel like that when doctors say something to you and then you go, well, I can't. And they go, okay. I'm like, well, wait. Was it important or was it not important?

Scott Benner (21:59)

Nothing. You know? Anyway, I'm sorry. Anyway, that was hard in everybody. She's almost done with her psychology degree, which apparently she's using on that teacher right now.

Erika Forsyth (22:08)

Well, yeah, I I also be curious. Yeah. What's what's the standard? Has she always done that?

Scott Benner (22:14)

It's it's all over the place.

Speaker 3 (22:16)

A lot.

Scott Benner (22:16)

Yeah. No. It feels like a lot. Anyway, I'm sorry. Where were we?

Regulating Anxiety & Removing Shame

Erika Forsyth (22:19)

Okay. So we are talking about as agency increases, anxiety can decrease. Right? So you're having this not only you're experiencing the physical kind of improvement in your management, you're also experiencing this psychological transition.

Scott Benner (22:40)

Okay.

Erika Forsyth (22:40)

Right? So you're going from my body is happening to me. My body failed me. I can no matter what I do, I cannot land in range, you know, whatever it may be.

Scott Benner (22:53)

Mhmm.

Erika Forsyth (22:54)

So you're having that that low agency, high anxiety, and also high grief, right, with that, which can transition to I'm interacting with my body through skillful action. So you're having active agency and regulated anxiety. And I think it's important that even if you are living in a space of high agency and confidence in your management, it doesn't mean that you aren't going to experience any anxiety. You're gonna have that lived experience. And I know we we know that.

Erika Forsyth (23:26)

I just want think it's important to

Scott Benner (23:28)

To say it.

Erika Forsyth (23:28)

To highlight that. Yes. And so it changes the quality. Right? So anxiety becomes more informational.

Erika Forsyth (23:36)

Mhmm. And maybe anxiety isn't even the right word there.

Scott Benner (23:39)

The fear?

Erika Forsyth (23:39)

You be you the the yeah. The fear Mhmm. The lived ex the feeling of being out of control, which is also anxiety. Mhmm. So maybe it is.

Erika Forsyth (23:47)

So it becomes more informational rather than this overwhelming experience where you feel so dysregulated in all areas of your life.

Scott Benner (23:56)

Okay.

Erika Forsyth (23:58)

So yeah. Do you want me to keep going

Scott Benner (24:00)

or pause? Yeah. No. There's nothing to pause for because I'm I'm listening. I just you know, I told you before we recorded, I just recorded today with somebody who I realized I mean, you actually helped me realize when I was talking to him.

Scott Benner (24:12)

I was talking to him about anxiety, agency, autonomy, and I didn't realize I was. I wasn't using those words when I was speaking to him about it, about finding a way to just do better for himself because he's, you know, he's sure you guys will hear it on the podcast at some point. But as you're talking, I you're saying came out in that conversation I had with him Mhmm. Where he talked about, you know, he I guess he doesn't feel like he has agency. So when diabetes needs something from him, he he has that feeling of, like, I don't wanna comply with being told what to do by diabetes.

Scott Benner (24:46)

And then it puts him into a situation where he's now being told what to do, but it's so dire he actually has to do it now. And that when he looks back on it and realizes that his actions previously led to what's going on now, he feels bad about it. It's it's exactly what you're explaining here. So I can't wait to find out what the answer is because I told him to put his head down and keep going. So, and I'm and and that, you know, life's not fair.

Scott Benner (25:11)

You know, you've gotta slowly build on experiences, make little changes that give you tiny bits of confidence. It'll grow after a while. I at one point, said to him, I was like, you know that thing they tell you if you fold a piece of paper in half and keep folding it in half, eventually, it reaches from the Earth to the moon. Do you know that mathematical thing?

Erika Forsyth (25:30)

Maybe it's buried back there. Yeah.

Scott Benner (25:32)

Yeah. Actually, explain folded paper to moon. I don't know it well enough to, like, explain it. I just know that there's this idea that if you take one sheet of paper, fold it in half, fold it in half again, and continue to do that, eventually, the distance that it would create is is pretty amazing. And I said, I think about that that way with, you know, effort and, you know, experiences.

Scott Benner (25:56)

Like, try a thing and, you know, continue to try and continue to try. You'd be surprised at how just like saving money, you know, you put a thousand dollars away and wake up in thirty years and it's six thousand dollars. Or, you know, like that's not a thing, you know, that you really expect the the folding over. Here it is. Hold on a second.

Scott Benner (26:14)

Imagine you have a standard piece of paper that's 1.1 millimeters thick. Every time you fold the paper in half perfectly, its thickness doubles. So you fold it once, it's point two. Twice, it's point four. Three times, it's point eight.

Scott Benner (26:27)

10 folds makes 10 centimeters. 42 folds of that paper is 439,800 kilometers. Yeah. I just think

Erika Forsyth (26:37)

I I can't even

Scott Benner (26:38)

I I right. You can't, but I think that's the point is that Mhmm. It's the same with effort, and it's the same with sticking up for yourself or trying to change your situation. Like, you're not gonna notice it when you do it. But if you just keep doing it, and eventually, there you go.

Scott Benner (26:53)

42 folds of a piece of paper. The moon is on average about 384,000 kilometers away from the earth, so it would take exactly 42 folds of a standard piece of paper to bridge the gap between the earth and the moon. And I think you could do that in your own life too, you know? So anyway, that's what I ended up telling him. Hopefully, it'll be helpful to him.

Scott Benner (27:11)

I also told him to get therapist because of, you know, because of the human parts of it here that, like, every time in the conversation, you could see how he felt got into his way or how he thought got into his way. Like, his mindset was a little skewed or he was coming at it from a wrong perspective to help himself. But, anyway, I I you know, please go on. I'm I'm I really do like this conversation.

Erika Forsyth (27:33)

So I think that just even that example of, you know, the, I'm not gonna I don't want diabetes to tell me what to do or diabetes, isn't gonna get in my way. I think there is that the wrestling of the autonomy. Mhmm. Right? Like, you you have now these external constraints that nobody wanted.

Erika Forsyth (27:58)

Right? So you're wrestling with that sense of grief and loss. And then if diabetes isn't gonna get my way, we hear, like, well, that can be, you know, that can be a positive mindset around I'm gonna keep doing the things I wanna do in life. I'm gonna achieve my goals, my dreams, and I'm gonna ensure that I know how as best I can to manage as well as I can within range values, etcetera, to reach my dreams.

Scott Benner (28:27)

Yeah.

Erika Forsyth (28:28)

Right? Then conversely, I don't want diabetes is not gonna get in the way because no one's gonna tell me what to do in that wrestling with that autonomy piece. It is still getting in the way. Right? Because you Yeah.

Erika Forsyth (28:40)

Like, it's still like, if you because I'm not gonna it's not gonna tell me what to do. I'm not gonna pre bolus. I'm gonna just do what I want in terms of what I eat and how I eat and when I do it. It's still diabetes is gonna get in the way.

Scott Benner (28:54)

Ask people all the time when they tell me, I told them diabetes isn't gonna stop us, or I don't let diabetes stop us. I said, you have to tell me what that means because it either means that you've taken control of it, and it's not stopping you because it's not having those impacts, or you've thrown it up in the air and said, I'm not letting diabetes stop me. I'm also not paying attention to it. So I'm just gonna keep going no matter what bad thing is happening to me. And I said, that's, you know, not a sustainable model because one day the health implications will come for you.

Scott Benner (29:23)

I I don't know. Like, when I was talking to this this guy, he's lovely. He wouldn't mind if we said his name even, but you guys will hear it in his episode. I said to him, and if you're not gonna do this, like, I because he knows what to do. Right?

Scott Benner (29:35)

And he's not doing it. And I said, and if you're not going to do it, then don't do it gleefully. But I said, don't live fifty miserable years. Live fifty awesome years and see a therapist and figure out why it is you don't wanna live eighty awesome years. I was like, but, like I mean, if you're going to I said, own your decision.

Scott Benner (29:51)

Really think about it. And if this is how you wanna live, then live this way. But don't beat yourself up about it while you're doing. Like, you're literally not moving. You're both not having success and you're not moving forward.

Scott Benner (30:03)

You're sitting perfectly still bemoaning what's happening to you. I'm like, you're gonna do that. It's already been four years. It's gonna be soon it'll be ten. I I actually said to him, was like, if you wanna do heroin, do it.

Scott Benner (30:15)

Like like, just do it. Go shoot it up and nod off and enjoy yourself. I'm like, I don't think you should. But if that's what you're gonna do, why are you beating yourself up about it while you're doing it? Just go for it.

Scott Benner (30:26)

Whatever you're gonna do. I said, I hope you don't do it. Like I said, I hope you take good care of yourself. I was like, but right now, I'm just talking to a person who's just circling the same drain over and over and again. And they have the feeling that they're circling the drain, but they never go down the drain.

Scott Benner (30:40)

I'm like, you're just sitting there. It's it's sad. I mean, obviously, that's not what I want for people and I wouldn't you know, if you're asking me my advice, it's not do heroin and what the hell. Mhmm. If you're doing that already, like, I mean, it just seemed doubly sad to, like, like, to beat yourself up about it at the same time.

Scott Benner (30:56)

You you know? Like, just listen.

Erika Forsyth (30:58)

Shame is a powerful

Scott Benner (31:00)

Yeah. Yeah. And be my dad. Just smoke the cigarettes and die. He he wasn't gonna stop, so just go for it.

Scott Benner (31:06)

You know? Like, life is too short to spend the whole time in a flux. Mhmm. You know?

Speaker 3 (31:11)

I I

Scott Benner (31:12)

don't know. Like, there's something about that, you know, when you look up at some people who live a a live fast, die young lifestyle and they just have made a decision that that's what it's gonna be. Those are all the people in all the movies that were like, I wish I could do that. You don't wish you could have died younger. You wish you had that carefree attitude that they have.

Scott Benner (31:29)

There's gotta be a way to have a carefree attitude and not do heroin is all I'm saying. This does not seem like a heavy lift. Okay?

Erika Forsyth (31:37)

Is that that that's the answer.

Scott Benner (31:39)

The answer is don't do heroin and have a carefree attitude. Goddamn it. Get out there and start working. Well, listen. In this last little bit of your notes, the answer to this problem must exist.

Erika Forsyth (31:48)

Okay. Well, I don't I don't know if there's an answer. I think the the one other point I wanted to make around as we're talking about mindset

Speaker 3 (31:57)

Mhmm.

Erika Forsyth (31:57)

And and shame. Right? With with higher agency, the imperfect data brings less shame. And that that is a journey. Right?

Erika Forsyth (32:09)

But we hear often in the messaging that your your blood glucose value, your a one c, your time and range, those are just numbers. Don't let them define you. Don't let them reflect your worthiness or your value or your identity, and that is 100% true. But part of that, getting to that mindset that, okay, this this blood glucose value does not tell me that I'm a bad diabetic. It does not tell me that I'm a bad parent managing my child's diabetes.

Erika Forsyth (32:43)

But we so often equate that, right, to our how we're doing as as a person with diabetes or a caregiver.

Speaker 3 (32:49)

Mhmm.

Erika Forsyth (32:49)

So but to shift to it's just a number. It's giving it's information. It doesn't need to be overwhelming. Part of that is a mindset shift and being intentional with how you assign value to the number, but it also is stemming from the higher levels of agency that you experienced over time. So right in the in the beginning, when you're learning the and you don't have high levels of agency, it makes sense that you also are experiencing high levels of shame and and and unworthiness and feeling out of control, and so you're experiencing high anxiety and high shame.

Erika Forsyth (33:28)

So with with the evolution and increase in levels of agency, it's like those levers. Right? Like, you're you're increasing with with the knowledge and experience and experiencing more predictable outcomes when you don't get that outcome that you have expected, this the shame around that number is is decreased because you realize, okay. I know that I oops. I forgot to do that, or I shouldn't have done this, or, you know, it was just one of those days.

Erika Forsyth (34:01)

It's okay. You know? So I think just highlighting too that it's not only about reducing the anxiety and increasing the agency, but also that shame narrative shifts as well.

Scott Benner (34:10)

I I it's another thing I said to him. I was like, look. You you know, because at the end, I was like, well, let's make some sort of a plan for you. He's like, let me get out a piece of paper. I was like, write down all the things you think you should do.

Scott Benner (34:18)

And after talking for an hour, goes, do the thing. And I was like, yeah. That's pretty much all of it, but let's break it down a little more. And and so we're breaking it down, and I said, then listen. Do two things for me.

Scott Benner (34:28)

Don't do that thing where it's like, if I missed a day, so I'm gonna restart on Monday. I was like, that's a human failing that we do. Like, I'm gonna start my diet on July January 2, or I'm gonna do, like, that stuff. I was like, that's bull. I was like, just if you mess it up on Tuesday, throw it into who cares?

Scott Benner (34:44)

And then just keep going, and don't wait till Wednesday. If you figure out at noon on Tuesday, didn't do something right, just go back to what you were doing. Like, it's a habit. Like, do the do the habit. Right?

Scott Benner (34:53)

But don't feel bad about it. You're still doing way better than you were doing the week before, so be happy about that. Like, stop seeing things as as an error all the time. It's an experience you had. You had an experience.

Scott Benner (35:05)

Build on it. Like, I have such a good idea. I'm I'm I've made a note off to myself. I don't wanna forget. But before you and I go, I wanna talk to you about it.

Scott Benner (35:12)

But, like, anyway, I'm sorry. Like, let let's go let's keep going. I'm all over

Speaker 3 (35:17)

the place.

Erika Forsyth (35:17)

You had a good idea.

Scott Benner (35:18)

I had a good idea finally.

Erika Forsyth (35:21)

Okay. So lastly, when when agency becomes dysregulated, you there's this nonlinear dynamic that occurs. Right? So if you then are feeling and this is kind of an agency and anxiety are both at a high level because if agency becomes overinflated or rigid, like, must control the blood sugars. I must know that when I do this at a, then b will happen.

Erika Forsyth (35:50)

And that hyperfixation, the hypervigilance around control Mhmm. I you know, paradoxically, anxiety will go up back again. And this we see you know, this again happens in at all stages of of of diagnosis, particularly in the beginning.

Scott Benner (36:08)

Yeah. And it it it listen. And it shows why like, I lived with a woman who is, you know, you would have colloquially called her type a a couple of, you know, twenty years ago, but she's got anxiety. And it makes her incredibly good at what she does, but I watch her do this. Like, she thinks that the the mastery of something will make the anxiety go away.

Scott Benner (36:28)

I'm like, the anxiety is what's making you master it. I was like, you're you got this backwards. You you know, like, she's always telling me, like, when I get this done, it'll feel better. And I was like, you that is not gonna happen. And and in this, like, you know, in this small example, the being hypervigilant about the data, emotionally reactive, self criticism, shame, all of that stuff, that's what I see from people.

Scott Benner (36:53)

When they double down on, like, I'm gonna get this. You don't understand, Scott. I'm the one who fixes this stuff. I'm like, you're not. Just step back, chill out, have the experiences, let time pass, and one day, you'll just wake up and go, oh, I get it now.

Scott Benner (37:06)

And then that'll be it, and you will have saved all of that time in the middle flogging yourself. It's I can't fix this for everybody. Just chill out.

Erika Forsyth (37:15)

Yes. As as they yes. As we all listen and say, okay. Let's just we'll just do that.

Scott Benner (37:21)

Just chill out, I guess, Scott. No. But, like, but there but the answer really is in there for everybody. So you just have to you really do just have to mellow out a little bit, have experiences, and and, you know, and let time pass until you have the tools and the and the education, things start making better sense, and you can kinda give I I do it now. Like, I mean, you can go back and listen to this.

Scott Benner (37:41)

I would have been upset about a higher blood sugar about something. I'm not like that anymore either.

Erika Forsyth (37:46)

And and maybe a diagnosis when she was two Oh my god. There was probably a higher level of anxiety. Than that.

Scott Benner (37:51)

Yeah. But but thanks to the good friendship of of the people who've come on the podcast and shared their stories and you and Jenny and all the people who come on here and help me, I've worked my way through it now. I'm not the same person today as I was back then. Luckily, I don't have the kind of personality that beat myself up too much in the middle. I did still, but not as badly as I I see some people suffer with.

Scott Benner (38:13)

And I can tell you if I could go back in time and change something, it would be not to beat myself up as much as it's gonna get there, but not to the level of throw it up to God. It's all gonna be okay. Like, no. You have to pay attention to it. You just can't let it make you nuts while you're doing it.

Scott Benner (38:27)

And I know I know all that's easier said than done, but but, nevertheless, I'm sorry.

Erika Forsyth (38:32)

I was trying to come up with another example of one of the few experiences, and this which makes our communities so unique, under we understand each other. When you work so hard at something and the outcome doesn't match your effort or even your knowledge

Scott Benner (38:50)

Yeah.

Erika Forsyth (38:50)

All the time, that is crazy making.

Speaker 3 (38:53)

Mhmm.

Erika Forsyth (38:53)

Right? And so it's understandable that

Speaker 3 (38:57)

It's the intertwining go to

Scott Benner (38:59)

Yeah. It's the intertwining of all of it. It's the it's it's every so this is what should I say my thing now or or no? Yeah. I'll say my thing now, and then you can you can do then we'll we'll finish up here.

Erika Forsyth (39:09)

Okay. Okay.

Looking Ahead: A Mental Health "Pro Tip" Series

Scott Benner (39:10)

It has occurred to me that over the years of you and I talking, we've had these, like, thoughtful conversations about, like, you know, specific ideas, agency and anxiety and that kind of thing today, but also body grief and, you know, and all the other things that we've yeah. And resilience and all the other things that we've talked about over the years, like, it it occurs to me, like, we've got the pathway to, like, a it's almost like a mental health pro tip series for diabetes. And maybe it's a map you follow and you because everybody gets to the same thing. It happens to everybody. Like, everything that happens happens to everybody.

Scott Benner (39:43)

Wouldn't it be nice to know that when you get to this part, it feels like this, and then this is kind of the mental health idea you have to understand to traverse this part. And then go to the next part, by the way, now this thing's gonna happen and you're gonna feel this way and this will happen. Oh, by the way, if you're having trouble with all that, have I told you about the five four three two one method? I think you and I are building like a real compendium of ideas. The problem is for usability, like, for people who listen through them, that's good.

Scott Benner (40:10)

But because you're explaining it to me and I'm trying to absorb it, it gets very conversational and not as pointed as it could be. And I'm wondering if we couldn't create, like, a flowchart that goes through the standard things that happen to a person along a diabetes diagnosis and lifetime, and then show them where that branches off into ideas that might help them as they get to those different stations. That was my idea. You think that works?

Erika Forsyth (40:38)

Well, I'll have to think about that one, Scott, because it feels very

Scott Benner (40:41)

It's a big idea.

Erika Forsyth (40:42)

I think it's a very complex

Scott Benner (40:44)

It is complex. But

Erika Forsyth (40:46)

on a theme of mental health and yeah.

Scott Benner (40:49)

And you might tell me I'm wrong, but, like, what I've been hearing during this two part episode is that forgive me if I'm if I I'm just if I sound pompous for half a second, but the ideas that are in here are already covered in the pro tip series. They're just covered very colloquially. You you do know what mean? And they're all in there. I'm not saying you can do them.

Scott Benner (41:10)

I'm saying that that they exist inside of that. Now I didn't know about any of the things that you and I have talked about over the last handful of years. I never I don't think I was ex exposed to any of it except through life experiences. I didn't have words to put to it or, you know, a textbook to point to. As I was talking about how I took care of Arden's diabetes and how I how it ended up working out for me, I think I've had all of these experiences going through.

Scott Benner (41:34)

Has it led me to a perfect mental health situation? Of course, it hasn't. But we're in a good place, and it at least gives you the framework to see that, like, a sure something else might happen to you, and maybe it's not gonna happen exactly like this. But is value in knowing that part because just like in the pro tip series, the pro tip series doesn't tell you exactly how to take care of diabetes in every situation that may come up, but it gives you enough foundational ideas that as you bang your way through this and have different experiences, you can rely on those foundational ideas to get through the new struggle. Is the framework of the pro tip series, end all be all?

Scott Benner (42:11)

Of course, it's not. Some of it you might need differently. Some of it might not help anything, but it gets you through. And I don't know that you and I haven't done the same thing. I know you don't think about it the same way I do, which is good because that's why you have your job and I have mine.

Scott Benner (42:27)

But I think that there's a foundation through all of our conversations that that would shepherd somebody pretty well through this life, and at least give you a shot at it. And, anyway, go ahead and think about that. That's it. There's there's your next big idea.

Erika Forsyth (42:43)

The larger themes of, you know, grief and validation and normalizing one's experience, and then what we're doing today, you know, and and have done in other episodes is giving you know, naming what's happening is so powerful. And is that gonna reduce this experience? Is it gonna reduce the pain? No. But I think having an understanding of what's actually occurring and why, even though it's gonna be people are going to hear it and receive it through their own filter and lens because of their own history.

Scott Benner (43:17)

Yeah. But it gives you a better shot. It's it's like it's even like parenting. Like, you don't parent somebody and explain every ounce of everything that's ever gonna happen to them. Right?

Scott Benner (43:26)

You give them big ideas and touchstones and things to say, like, these are rules we follow. These are rules we bend. This is important to us. This isn't as much so. So that when they run into a terrible situation or something that they don't know what to do, they at least have these little, I don't know, these foundational ideas that they have about how to live, and they apply it to that situation.

Scott Benner (43:48)

And generally speaking, it gets you through that. Like, I know you think about it as, like maybe I'm inferring something, but, I think you think of it more as, like, if we're gonna say something to somebody, it should be perfect for them. And I get that. And that would be a good reason to go to therapy and talk to somebody who is speaking to you directly. But when you're just talking out into the air for people, I mean, there are a lot of things that happen over and over again to people who either have type one or love somebody with type one, and then they hit that spot, I feel shame.

Scott Benner (44:17)

Right? Then they just feel shame forever because they don't have any tools or even words for the shame a lot of the times. So if you let them know when this happened, you are feeling ashamed. And over here on the side or ideas about that that you can go into further and try to understand, maybe they'll actually go over there and understand it, and then come back and go, oh, and then find a way to give away some of that shame and move forward a little bit. Because I I just feels like that's what we're talking about is that people are walking a path, they fall into a pothole, some of them they jump out of and some of them they crawl out of and some of them they get stuck in.

Scott Benner (44:51)

I'm saying let's throw a rope ladder down there and a flashlight and see if they can figure out how to get out, you know, and maybe some of them will hold the flashlight from the last pothole and mix the next one. In a world where our parents don't teach us this stuff, and I'm not saying be mad at your parents. Our parents didn't teach them anything either. Like, in a world where we don't pass this kind of stuff on to to each other, you're left to just figure it out as you're fighting your way through life. And I'm just telling you most people just get stuck.

Scott Benner (45:17)

But, my my experience with the podcast is is that when you give people good tools, a lot of them traverse their thing better. And then they're not stuck as long and then go get stuck in the next thing, Erica. And maybe get to the end where they grow some marigolds and drop dead. That's what I'm that's my plan. Hold on.

Scott Benner (45:34)

I'm gonna put some marigolds in the ground. I'm gonna watch them, and then I'm gonna give up. But on the way, I don't wanna be stuck so long Mhmm. Everywhere. I think about that with the diabetes the same way.

Scott Benner (45:43)

Like, it's heartbreaking to see somebody stuck for five, ten, fifteen years, but because they didn't know their basal was too low and they're not putting their insulin in enough time before they eat. That's not enough to you not not knowing that shouldn't ruin fifteen years of your life. And then it exasperates all this other stuff that that we're talking about here. Everything feels worse because that that's why when I that's why when I think about diabetes, I just think if you know how to get your settings right, you know how to time the insulin. It's not a perfect system, but it alleviates so much that it might give you enough conscious time to think about other things.

Scott Benner (46:22)

And I think the mental health stuff gets ignored by people greatly in a regular lifetime. People who are going through this kind of stuff have even less time and mental energy to put on something like that. So anyway, I mean, you can just go listen to all of them. I think you'd be okay. But, like, I don't know if there's not a way to, like, reframe it.

Scott Benner (46:40)

Something to do in 2027 is what I'm saying.

Erika Forsyth (46:42)

I I think it's an interesting idea. I think the the concept of, you know, how does one person change is a larger

Scott Benner (46:50)

Charlie, there's no answer to that part.

Erika Forsyth (46:52)

Right. Yeah. Right? Like, are is someone going to change based on them listening to the pro tip series or a mental health pro tip series, so to speak? Mhmm.

Erika Forsyth (47:02)

Holding that larger question of what is one's motivation for change, and what do they need to get there? Could could a series be beneficial? Yes. Is but true how does true change actually occur?

Scott Benner (47:17)

Well, that's between them and Jesus. You know? This is just a podcast. They can go figure the rest of that other I just think it's nice to throw tools on the ground and see if people pick them up and use them. That's all.

Scott Benner (47:30)

And it's not like they're tools that they're gonna cut their hand off with. It's, you know, this is what shame feels like. This is what agency is. You know? There's nobody right now listening whose parents told them about agency.

Scott Benner (47:40)

Okay? That just didn't happen. So and if you did, then your parents were therapists, and you have a whole different group of problems then.

Erika Forsyth (47:49)

Yeah. I wonder when actually the term agency became more common.

Scott Benner (47:54)

Yeah. I did it pop into

Erika Forsyth (47:55)

the into the zeitgeist? Verdacular. Yeah. Zeitgeist. Yeah.

Scott Benner (47:58)

No idea. So Finish up. I'm sorry.

Erika Forsyth (48:00)

Yes. No. That I think those are all good

Scott Benner (48:03)

Thank you.

Erika Forsyth (48:03)

Wonderings. And I think to the end, this this two part series, the goal, you know, ultimately ending with, you know, having that balance, right, to not feeling like you are trying to control a a partially controllable system, right, that leads to the heightened anxiety and working really hard to try and control something that isn't fully controlled. And, you know, we don't even I don't like using that word either.

Scott Benner (48:34)

Yeah.

Erika Forsyth (48:34)

You know, doing the best you can to manage as best you can. So go goal having enough agency to act with confidence and know how and trust within yourself and your body, but also holding that place that that's what we were talking about earlier, like, enough acceptance, enough grace to tolerate the unpredictable. Or when when things don't go, you know, as as you anticipated, how do you bounce back from that, and how can you be kind to yourself in that space while still holding the agency? And so this whole process that we've been describing, this you know, the rebuilding of agency, which really coincides with with your grief, and experience that restores that felt economy. So going back to what we were saying at the beginning, you do have have a true lived experience of loss of autonomy when you have this diagnosis within your family system.

Erika Forsyth (49:34)

But as you increase the agency and the the compassion, you have a restored felt autonomy.

Scott Benner (49:47)

So this is what it is. Right? And then I have to accept that I can't change. This is our reality. And then I go out there and I make try to make good decisions.

Scott Benner (49:59)

I try to get good tools. I try to learn from my experiences, try not to beat myself up too much, and maybe in after the passage of time, you might pop up and feel like, okay. Like, I I got through that part now. But it's it is very interesting to break it down into, like, into those pieces that are valuable to have when you don't understand why you feel the way you feel or why you're thinking what you're thinking, you know, because it it all feels out of control. So it's it's nice to put words to it.

Scott Benner (50:26)

It really is.

Erika Forsyth (50:26)

Yes.

Scott Benner (50:27)

Okay. Well, all of you use your autonomy to create some agency. I know those are it's it seems so confusing to me still. But, you know, go get it. You can do it.

Scott Benner (50:40)

But by the way, and if you can't ask ask, like, one of these large language models because this thing is in front of me about the folded paper, and it just said to me, would you like a visualization to make it clearer? And I said, yes. And it just built this thing with a slider on it. Now I'm watching paper fold in half and get it's amazing.

Erika Forsyth (50:58)

I I might I might need to go do that.

Scott Benner (51:00)

I watched your face when I said it. You're like, I know that's not right. Yeah. Well, it's right. You just keep making one good decision and then you make another one.

Scott Benner (51:10)

And before you know it, you got you got way more than you thought you were going to. So thank you. I appreciate this very much.

Erika Forsyth (51:16)

You're welcome. Thank you, Scott.

Closing & Sponsors

Scott Benner (51:27)

The conversation you just heard was sponsored by Touched by Type One. Check them out please at touchedbytype1.org on Instagram and Facebook. You're gonna love them. I love them. They're helping so many people at touchedbytype1.org.

Scott Benner (51:45)

Are you tired of getting a rash from your CGM adhesive? Give the Eversense three sixty five a try. Eversensecgm.com/juicebox. Beautiful silicone that they use. It changes every day.

Scott Benner (51:58)

It keeps it fresh. Not only that, you only have to change the sensor once a year. So, I mean, that's better. 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.

Scott Benner (52:21)

There are links in the show notes and links at juiceboxpodcast.com. Thank you so much for listening. I'll be back very soon with another episode of the juice box podcast. If you're not already subscribed or following the podcast in your favorite audio app, like Spotify or Apple podcasts, please do that now. Seriously, just to hit follow or subscribe will really help the show.

Scott Benner (52:45)

If you go a little further in Apple Podcasts and set it up so that it downloads all new episodes, I'll be your best friend. And if you leave a five star review, oh, I'll probably send you a Christmas card. Would you like a Christmas card? If you're looking for community around type one diabetes, check out the Juice Box Podcast private Facebook group. Juice Box Podcast, type one diabetes.

Scott Benner (53:15)

But everybody is welcome. Type one, type two, gestational, loved ones, it doesn't matter to me. If you're impacted by diabetes and you're looking for support, comfort, or community, check out Juice Box podcast, Type one Diabetes on Facebook. My diabetes pro tip series is about cutting through the clutter of diabetes management to give you the straightforward practical insights that truly make a difference. This series is all about mastering the fundamentals, whether it's the basics of insulin, dosing adjustments, or everyday management strategies that will empower you to take control.

Scott Benner (53:50)

I'm joined by Jenny Smith, who is a diabetes educator with over thirty five years of personal experience, and we break down complex concepts into simple, actionable tips. The diabetes pro tip series runs between episode one thousand and one thousand twenty five in your podcast player, or you can listen to it at juiceboxpodcast.com by going up into the menu. Have a podcast? Want it to sound fantastic? Wrong way recording.com.

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#1875 Freak Out in Bay 3

Sam shares her son’s rare KCNJ11 neonatal diabetes diagnosis, her fight through the NICU, and her incredible personal journey of breaking generational trauma to build a beautiful life.

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Key Takeaways

• Neonatal Diabetes & Genetics: Sam’s son Elliot was diagnosed with a rare KCNJ11 gene mutation (occurring in 1 in 600,000 babies), causing neonatal diabetes, which was initially managed with sliding-scale insulin.
• The Power of Advocacy: Sam’s traumatic hospital experience highlights the immense pressure parents face. From dealing with unauthorized $12,000 genetic labs to navigating threats from social services, her story underscores the crucial need to relentlessly advocate for your child.
• Understanding the KCNJ11 Mutation: This specific mutation prevents the kATP channel in the pancreas from closing, blocking the release of insulin. Because the body's natural glucose-sensing mechanism is broken, insulin is not secreted properly.
• Transitioning from Insulin to Glyburide: Because of the nature of the KCNJ11 mutation, Elliot was successfully transitioned off daily insulin injections at age two. He now takes a compounded oral sulfonylurea (glyburide) that pharmacologically forces the pancreatic channels to close, releasing insulin.
• Breaking Generational Curses: Sam shares her deeply moving personal journey of overcoming a traumatic, abusive childhood to provide a healthy, stable, and supportive co-parenting life for her son.

Resources Mentioned

• Dexcom G7: dexcom.com/juicebox
• Omnipod 5 Starter Kit: omnipod.com/juicebox
• Cozy Earth (Use code JUICEBOX for 20% off): cozyearth.com
• Juice Box Podcast - Bold Beginnings Series: juiceboxpodcast.com
• Juice Box Podcast Private Facebook Group: Search "Juice Box Podcast, Type 1 Diabetes" on Facebook
• Wrong Way Recording: wrongwayrecording.com

FULL EPISODE TRANSCRIPT

Introduction & Sponsors

Scott Benner (0:00)

Here we are back together again, friends, for another episode of the Juice Box podcast.

Sam (0:16)

I am Sam. My government name is Ashley Silea. I am the mother of a neonatal diabetic with a KCNJ eleven gene mutation. He was diagnosed eight hours after he was born.

Scott Benner (0:34)

If your loved one is newly diagnosed with type one diabetes and you're seeking a clear practical perspective, check out the bold beginnings series on the juice box podcast. It's hosted by myself and Jenny Smith, an experienced diabetes educator with over thirty five years of personal insight into type one. Our series cuts through the medical jargon and delivers straightforward answers to your most pressing questions. You'll gain insight from real patients and caregivers and find practical advice to help you confidently navigate life with type one. You can start your journey informed and empowered with the Juice Box podcast.

The bold beginning series and all of the collections in the Juice Box podcast are available in your audio app and at juiceboxpodcast.com in the menu. 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.

The episode you're about to enjoy was brought to you by Dexcom, the Dexcom g seven, the same CGM that my daughter wears. You can learn more and get started today at my link, dexcom.com/juicebox.

Today's episode is also sponsored by the Omnipod five. And at my link, omnipod.com/juicebox, you can get yourself a free, what I just say, a free Omnipod five starter kit. Free? Get out of here. Go click on that link.

Omnipod.com/juicebox. Check it out. Terms and conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox.

Links in the show notes. Links at juiceboxpodcast.com. The podcast is also sponsored today by Cozy Earth. You can use my offer code juice box at checkout to save 20% off of your entire order at cozyearth.com. Everything from the joggers that I'm actually wearing right now to the sheets I sleep on, the towels I use to dry myself with, and whatever else is available at cozyearth.com.

Just use the offer code JUICEBOX at checkout.

Meet Sam & The Birth Story

Sam (2:41)

I am Sam. My government name is Ashley Silea. I am the mother of a neonatal diabetic with a k c j KCNJ eleven gene mutation. He was diagnosed eight hours after he was born.

Scott Benner (2:58)

Wow. Am I calling you Sam?

Sam (3:01)

Yes.

Scott Benner (3:02)

Okay. Please. Plea please.

Sam (3:05)

It's just easier for everybody to call me Sam.

Scott Benner (3:08)

I have no trouble with that. I just wanted to make sure I didn't start calling you something else. Well, how how old are you?

Sam (3:14)

I am oh, thirty thirty?

Scott Benner (3:20)

Sam, why don't you know how old you are?

Sam (3:22)

Well, when you turn after you turn 25, you just kinda forget.

Scott Benner (3:27)

Oh, was that what you do? Yeah. I should try that. You're 30 years old. You have how many kids?

Sam (3:36)

One.

Scott Benner (3:36)

One. And how old is the baby?

Sam (3:38)

He is now 10.

Scott Benner (3:42)

10. Okay. So take me back. Your pregnancy pretty was it, like, a common pregnancy? Did it seem like it was problematic?

How was that process?

Sam (3:54)

So it was actually really great up until it wasn't. About thirty two ish weeks along, we noticed some problems, such as, like, the placenta starting to de He just wasn't growing. He really didn't have the room to grow because I'm a very small person also. And then things just kinda escalated from there. In about thirty five weeks, my doctor had made a comment stating that he wanted me to deliver at the time we were located in Iowa, he wanted us to deliver in the University of Iowa.

Mhmm. He never really made it seem like anything was, like, drastic, So I was like, no. Like, it's okay. Like, I picked you. I want you for a reason.

I'm a very, so to speak, shy female. I don't want everybody up in there and everything, so I was dead set that he was going to do it. He never made me feel like things were gonna take a turn for the worse.

Scott Benner (4:56)

Okay.

Sam (4:56)

He was very calm about everything. And looking back now, I realized it was actually, like, more serious than he ever led me to believe. And I think it was more him just trying to keep me calm because it we were in, like, the in between. We it could go either direction.

Scott Benner (5:14)

I see. No reason to get you upset in that moment?

Sam (5:18)

Yes. Okay. And then about thirty five weeks, he was like, okay. I'm gonna give it a couple more days. If we don't see any progress, then we're gonna go ahead and induce you.

And sure enough, we started the induction process.

Scott Benner (5:35)

Oh my. And then I'm sorry. You married at that time?

Sam (5:39)

So my spouse and I at that time, my son's father, we were never actually married, but we were common law married at the time.

Scott Benner (5:47)

You you weren't by yourself in the hospital is what I'm getting at.

Sam (5:50)

Correct.

Scott Benner (5:51)

Okay. Good. Good. So the, induction, they give you the juice to get it going. Right?

Is that the whole thing? You Yeah. Making a make a plan, show up on a certain day. It wasn't rushed or emergent or anything like that.

Sam (6:05)

Nope. We show they said to hear midnight on Friday. I think it was, like, the August 27, and we're like, okay. So we got there. It was my mom and I because we had a new puppy at the time, so his dad stayed at home.

The next morning, he was up there and everything. So it's would actually been later on and they're on Friday, and they started some type of pills they gave me, and they started all their stuff. And they're like, okay. You're gonna be here for, like, thirty six hours, and some labors last up to seventy two, especially with it being your first one. And I'm like, oh my.

Okay.

Scott Benner (6:44)

Awesome. And then yeah.

Sam (6:47)

I was like, this sounds like a great time. And then all of a sudden, I mean, several hours later, they wanted me up and walking as much as possible to try and speed up the process.

Scott Benner (6:58)

Mhmm.

Sam (6:58)

And all I wanted to do was take a bath. Yeah. And I was like, okay. It's time for my bath. Like, she said, I gets up I get up every hour for a half hour.

It it's time. And she's like, let's just go ahead and see how far along you're coming. She's like, when you hit a six, you cannot because if your water breaks, like, you cannot be in the bathtub without water. She's like, okay. But I promise you, I'm nowhere near six.

And she's like, oh, you're at seven, so you're not taking a bath, and we're calling the doctor.

Scott Benner (7:30)

It's your last moment.

Sam (7:32)

Yeah. And I was so mad in that moment. I was like, I just want a hot bath, and I just wanna feel better. And so they called the, anesthesiologist up. He never made it.

Scott Benner (7:44)

Mhmm.

Sam (7:45)

They called my doctor in, and they're like, you're gonna have to hurry up because she's in actual active labor. And he's like, there's no reason that she should be. And she's like they they're like, no. She absolutely is. He got there, and I I kid you not.

I pushed five times, and he was still in his farm clothes, and I had my son.

Scott Benner (8:08)

Did he have a corn cob in his pocket by any chance?

Sam (8:11)

No. But he didn't have mud on his boobs.

Scott Benner (8:14)

Oh my gosh. That's I don't know if that's amazing or creepy. I can't tell.

Sam (8:19)

Yeah. He's like, I didn't even have time to go on my lab coat. So

A Frightening NICU Transfer

Scott Benner (8:23)

baby comes, is there initially any problems at all or anything, like, on that day to be concerned about?

Sam (8:31)

On that day, yes. But, like, the first couple hours, like, brand new mom. I was 20, yeah, 20 years old when I had my son.

Scott Benner (8:41)

Wow.

Sam (8:41)

And they, like, threw him on my not really threw him, but, like, put him on my chest. And I was like, what do I do? Like, I don't know what I'm supposed to do right now.

Scott Benner (8:50)

I'm still thinking that, in case you're in case you're wondering, Sam. I'm a I'm a I'm pretty far into this, and and every day, I think, I wonder what I'm supposed to do.

Sam (9:00)

Yeah. Like, they do not give you an instruction meeting. And I, like, looked around at the nurses, like, dumbfounded, like, what just happened? Because, again, everybody's told me seventy two hours and everything, and five pushes, and he's here. And I was like, uh-uh.

Yeah. Like, I was just dumbfounded. So in the first, like, couple hours, I had opted for him to stay in the room with me because I wanted to start, like, caring for him and getting used to, like, the mom things. And they came in about an hour later and said, we're gonna just gonna take him in on the nursery just for some observation and get him cleaned up and stuff. And I was like, okay.

Didn't think anything of it. Like, they were just calm and collected. They reassured me. Come to find out behind the scenes, they were continuously checking his glucose because it wasn't where a normal child at that age should be.

Oh.

Sam (9:55)

And then about oh, I couldn't even tell you what time it it was. I wanna say early afternoon, his pediatrician comes in, and she's saying, okay. So, like, we're noticing and, of course, the doctors, you know, use the big words and stuff, and I just went through this traumatizing life experience. And I was like, can you just dumb this down for me? Like, I cannot understand what you're saying.

And she's like, so your son's glucose is higher than what we want it to be. We're gonna have to transport him. And my mom's like my mom and I were both like, oh, okay. So what floor are we moving to?

Scott Benner (10:35)

Yeah.

Sam (10:35)

Just thinking we're going to a different level. And she's like, no. He has to go to Iowa City. I was like, what?

Scott Benner (10:45)

And then

Sam (10:46)

from where we were, it would

Scott Benner (10:48)

Why there? Is it because they have clean shoes? Why did you have to go to Iowa City? Did they have like

Sam (10:52)

a So the University of Iowa is a research hospital.

Scott Benner (10:56)

I see.

Sam (10:58)

So they have they were better equipped to to care for just about, honestly, anything I've never to best comparison I can think of with Iowa City is, like, going to Saint Louis.

Scott Benner (11:11)

Okay. And do you get to go with him, or do they keep you at that hospital?

Sam (11:17)

So in a normal situation, no. If I had been if I had been probably in a better condition than I was because my blood pressure tanked and everything else, they would not have discharged me. And in that moment, I actually found out that just because baby gets discharged to a different hospital doesn't mean that mom does. And I I'll be honest, I freaked out on everybody finding that out. And my doctor actually agreed as long as, like, I passed certain requirements, I was able to go.

And he's like, with the complication that she's having or the complications she started having after giving birth and stuff, Iowa City is actually going to be the best place for her too.

Scott Benner (12:04)

That was because sounds like he made a decision to help you stay with the baby. Yes. Yeah. Let me pause for a second there. So we'll we'll put you guys in transport, and we'll hold on for a second.

In your family, any issues like this in the past? Do people have autoimmune issues? Are people sick in general? Like, what's the family health like?

Sam (12:23)

So I do not two years after he was born, my mom has an autoimmune disease called Graves' disease, but it has nothing to do with the pancreas. It deals with the thyroid. Yep. My, like, very distant ancestors have a history of type two diabetes, but nothing, like, nothing else. And my cousin's son was actually diagnosed a year and a half ago with type one diabetes.

Scott Benner (12:51)

Your cousin's son was. Okay.

Sam (12:54)

And they're the same age.

Scott Benner (12:55)

Okay. Okay. So alright. So they get you to the hospital. Baby's blood sugar won't come down.

It shouldn't be lost on people. Like, 20 is young to be dealing with all this, you know. So Yes. It's a lot happening. You know, you don't have a background in this.

Does anybody in your family have, like, even a medical background to help walk you through it, or are you just sort of, you know, at the mercy of what people will tell you?

Sam (13:21)

Yeah. I was 100% even, like, honestly, still to this day, I'm still at the mercy to what people tell me because it doesn't matter how much knowledge you have about diabetes. I personally believe anything and everything can change in a split second. Mhmm. And you can't have all the knowledge.

There's always going to be something else that you I feel like I'm learning something else every single day.

Scott Benner (13:46)

Yeah. And you're at it for ten years now. Yes. Yeah. What is this gene mutation?

And, you know, when do they figure it out? And then how's it presented to you? And then what what does that mean for his life, you know, in the beginning and now?

Sponsor Break

Scott Benner (14:01)

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Scott Benner (15:09)

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The Reality of the NICU

Sam (16:11)

They transported us to Iowa City. We couldn't go in the room because they were putting an arterial line. We had no idea what this was. We were able to finally go in at 03:00 in the morning just to be told that he we cannot hold him until this arterial line comes out Mhmm. Because it's connected through his like, where his umbilical cord would have been, so his belly button, and connected to the major artery in his heart.

So that way, they could do blood draws without having to poke him because they were checking him at that time every hour.

Scott Benner (16:44)

Okay.

Sam (16:44)

So they didn't wanna constantly poke him if they didn't have to on top of giving him insulin shots because he was on insulin shots at that time.

Scott Benner (16:52)

Alrighty. Okay. Wow. How much insulin do you give a newborn?

Sam (16:57)

So he was on a sliding scale, and I still have all the records of them. He was getting anywhere from one to three units for the first nine and a half months nine and a half to 10 or I'm sorry. Nine and a half to a year of his life. Mhmm. It was it just depended on where his sugar was.

Scott Benner (17:23)

Jeez. Did you breastfeed?

Sam (17:26)

I did not breastfeed, but I did pump.

Scott Benner (17:30)

Okay.

Sam (17:31)

Because he was he had the arterial line in for so long that I Oh, you couldn't couldn't take him up.

Scott Benner (17:36)

I see.

Sam (17:38)

And they did after about three days, I ended up having a breakdown and they they were able to get it to where I could put my arm, like, under his head and just kinda hold him inside the incubator like that.

Scott Benner (17:51)

Yeah. How'd you make it three days? I'm only talking to you for fifteen minutes. This was ten years ago, and I'm about to have a breakdown. This is really upsetting.

Seriously. Yes. You know? Wow. Okay.

So they let you kinda nuzzle in with them a little bit there, but they're very worried about that that arterial line.

Sam (18:07)

Yes. Yeah. I was too. Because, like, you're telling me if I pull on this or if it gets snagged on anything, like, it's connected to his major arteries.

Scott Benner (18:15)

Yeah. Yeah. No. Of course. And you're 20 again, I'm it's it's not gonna leave me that you're 20 years old while this is happening.

I don't I think I was at a movie theater when I was 20 years old. You you know what I mean? And you're you're in a hospital doing this. You're on a sliding scale. What do you do?

Do you let him eat first, then give him insulin? Are you like, how does that all work back then?

Sam (18:34)

So they would have us let me back up just one second here. He when he was born, he was born under four pounds as well.

Scott Benner (18:44)

Okay.

Sam (18:44)

And he could not maintain his own body temperature, so he had to be in, like, a heated incubator on top of it.

Scott Benner (18:50)

Mhmm.

Sam (18:51)

With him being so small, and they just kept saying, like, he's the healthiest baby in the NICU. He's the healthiest baby. And I'm thinking, how is this healthy? Like, he's got all these tubes connected to him, and they come in and said he wasn't eating enough. So they had to put this NG tube in.

Mind you, I'm a first time mom. I have no idea what a NG tube. I do not take any nursing classes at all whatsoever. And so I lost it over this NG tube because he's got all these other wires. And one of the nurses, after I completely lost it on everybody, came in and she said, just because sometimes as doctors and nurses, we forget that something so minor such as an NG tube, which is just a feeding tube, come to find out.

Mhmm. Something that's so minor to us is actually a big deal to the parents, and sometimes we don't take a moment to reflect on that and explain that this is a good thing to get the nutrients he needs and to see how we can better help him with his sugars.

Scott Benner (19:55)

Yeah.

Sam (19:56)

So that is, like, a moment that stuck with me

Scott Benner (19:59)

for Scary. Right?

Sam (20:01)

Up until this day.

Scott Benner (20:02)

Yeah. Yeah. It's just a scary sight. He's so little. And what's that tube go in his nose?

Is that right?

Scott Benner (20:09)

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Sam (21:16)

Yes.

Scott Benner (21:17)

Yeah. Oh, jeez.

Sam (21:18)

And all they do is just pour the breast milk in through the tube and it goes in through snows and gets into his digestive tract, but I didn't know that. They just kept saying another tube, another tube.

Scott Benner (21:28)

Mhmm. This boy you made this baby with, he's 20 as well?

Sam (21:32)

So he oh, gosh. How old? He's five years older than me. So he's currently 34 or 35.

Scott Benner (21:39)

Okay.

Sam (21:39)

35.

Scott Benner (21:40)

But he was like 30 but he's 25 then, so he's still no help. I remember myself at 25. Yes. Yeah. Yeah.

I gotcha.

Sam (21:45)

And he like, of course, I was on maternity leave. We still have bills to pay on top of it. So he I'm two hours away from him at this hospital with our newborn. He's back at work, like, two or three days after we have the baby Yeah. Just because we still have to have an income to be able to pay our bills and pay for insurance and everything else.

We started in the bay one, which is, like, critical unit, and then they moved us, like, to each bay. And there's up to three bays in just like the normal NICU. By the time we got to bay three was when they finally did the genetic lab to see what was causing the diabetes. Mhmm.

Advocating During the $12,000 Genetic Lab

Sam (22:30)

We found out that our insurance would not cover this lab, and it's a $12,000 lab just for one person. They wanted all three of us to get this done. Oh. So we tried to opt out of getting this lab done because who has $12,000 in their back pocket?

Scott Benner (22:49)

Well, it sounds like 36,000.

Sam (22:51)

Well yeah.

Scott Benner (22:51)

Yeah. Yeah. Yeah. Yeah. But it you're independently wealthy.

Right? Your 25 year old boyfriend was working as a rocket scientist, maybe? I I mean, how

Sam (23:00)

Yeah. Right?

Scott Benner (23:01)

Well, hey. What if we were to ask? Hey. You guys get $36 to do free tests? We don't.

No.

Sam (23:07)

No. No. Like, we we do not. And not knowing how long we're gonna be here for and I was gonna be off of work, we can't just spend money just because we want to spend money. Like, that was not an option.

Scott Benner (23:22)

Yeah. What'd they end up doing for that then? I mean, because you have the diagnosis, so how'd it work out?

Sam (23:26)

So at this point in time, we did not yet find out that he had the k c n j eleven gene mutation. We just knew he had some type of diabetes.

Scott Benner (23:36)

Okay.

Sam (23:36)

And they they did say, like, several times that they believed it was linked to genetics because they there was all out of all the other labs and tests that they ran, like, there was no explanation. And this was the only test that they hadn't run yet.

Scott Benner (23:50)

I see.

Sam (23:51)

So they they knew it was linked to genetics, but they couldn't pinpoint exactly how without this specific test.

Scott Benner (23:57)

Okay.

Sam (23:57)

And we told them, like, we can't do this. We can't afford it. I'm like, that's just not an option for us. Well, we did some research and found out that if we paid for shipping in The UK, they would do the lab for free because they wanted to study this.

Scott Benner (24:16)

It was like, $100

Sam (24:18)

each.

Scott Benner (24:18)

Yeah. It's $36 or 45¢ for a stamp. Which would you prefer? Yeah. Thanks a lot.

Sam (24:25)

Right? So we, like, explained to them, we would be more than happy to pay to have it shipped to The UK to have them study it, and, like, they would share the answers or whatever with the hospital. Mhmm. The hospital did not wanna go that route. And I and I understand it now.

At the time, I didn't, but contamination and everything and all the things. So I was like, I don't know how we're gonna pay for this. Like, we're just not going to do it. We'll just do do with what we got. We know the problem, and we can go from there.

We're just trying to dig die deeper at this rate.

Scott Benner (25:00)

Okay.

Sam (25:01)

Couple hours later, he's back home two hours away, and me and baby are there. About two hours after we made this decision, a nurse comes in with a needle, and I kid you not. That needle was probably six and a half inches long. The needle was longer than the baby's arm. And I was like, what are we doing?

Like, I haven't seen an insulin shot like this before. What are we doing here?

Scott Benner (25:27)

Yeah.

Sam (25:28)

That's when they explained they were doing the genetic lab behind our back.

Scott Benner (25:31)

And then gonna charge you for it later? So

Sam (25:35)

I freaked out because that's what I thought. I freaked out again. Another freak out episode. Mhmm.

Scott Benner (25:41)

Freak out in Bay three. Freak out in Bay three. Yeah. Yeah. Yeah.

Sam (25:46)

Got the direct the pedia I'm sorry. Pediatrician medical director in there. I got his entire endo team in there, and it's it was this one specific doctor that had ordered it. And to this day, I still will not speak to her. If she's the only on call, I will call and call and call until I get somebody else.

I will not talk to her. And I'm on the phone with my spouse, and he's yelling at her. I'm just a blubbering mess. I'm having a full on panic attack at this point because, finally, everything just got to me, and that was the tipping point. Come to find out, they made an agreement that the university would cover the cost but never expressed that to us.

Scott Benner (26:30)

Yeah. Communication's not great. Also, like how the same, group of people who were not concerned about the muddy boots were concerned about contamination. That's interesting.

Sam (26:39)

Right?

Scott Benner (26:40)

Every everybody's got their head screwed on nice and straight. Yeah. Again, so how simple would it have been just to come to you and say, hey. Great news. You know?

The university's gonna take care of the testing. We're gonna test the baby now. You would have been like, oh, that's amazing. Thank you.

Sam (26:54)

Yes. Absolutely. And it really would have been just that simple, and I wouldn't have freaked out for, like, the hundredth time at this rate.

Scott Benner (27:02)

Yeah. So okay. So but once you get that diagnosis, I mean, do you treat them any differently than you were prior to knowing?

Sam (27:10)

Yes. Okay. So we were in the hospital for several months, and this lab could take anywhere from six to twelve weeks to come back because it tests literally everything in its dog. So we're still in the hospital. We're still doing the insulin on the sliding scale as normal, making adjustments as needed with his body.

Finally, the day comes for I'm sorry. Let me back up here. Mhmm. After that freakout episode with the genetic lab, they thought I had postpartum depression, so they sent social services in. I looked at them, and I said, okay.

I'll tell you right now. I do not have postpartum depression. I know it's a very real thing, and I know a lot of people deny it. But let me tell you about my experience from the minute I had my son up until I got Really, let's backtrack up to my thirty five week gestation mark up until today because these are all the things that's happening. And you're telling me that you wouldn't have a minor freak out?

Scott Benner (28:17)

I don't love the word gaslighting because, well, I have my own reasons, but that feels like that's what that is. Right? Like, you know, you know, beat on your head for days and days and days, and then when you go stop it, they go, hey. Why are you so upset?

Sam (28:31)

Yeah. And I that that's literally what I told him. Like, you have to understand. I've been through all of these things, and I finally just combusted.

Scott Benner (28:42)

Yeah. I would imagine.

Sam (28:43)

I think it's justifiable.

Scott Benner (28:45)

Listen. I I wanna be honest with you. Yesterday, I had to make three phone calls. Okay? One to insurance for my car, one to something we're purchasing, and one to another these three unrelated issues in my life.

Right? And not one person on the phone appeared to have any grasp of their job, what they were supposed to be doing, what was needed. You know, you'd ask a simple question, they'd say, I don't know. And I'm like, woah. Woah.

If you don't know, who who know you know what I mean? It would be like if you went to the grocery store and pointed at the cash register and said to the cash register person, what's that? And they said, I don't know. Like, it was on it was on that level. Okay?

So these three calls, they go exactly the same way. I walk downstairs and spend the better part of six minutes ranting at my wife. And I don't I don't even know what I was able yeah. I was just like, why is everyone I mean, am I just getting old? Like, what's happening?

How come it appears that no one fundamentally understands their job or cares or is motivated to look into it any deeper? When they when the answer was I don't know, I said, well, what are we gonna do about that? And one girl went, she went, I was like Oh, no. Yeah. Like, I guess we hang up the phone now and you'll have no resolution.

It's like like the vibe of it. I had not been through all the things you were through. I just had three phone calls that were frustrating and I had a freak out in Bay 3. I just want you to know, except my freak out was in the kitchen.

Sam (30:16)

That was awesome. I had a freak out in Bay 3.

Scott Benner (30:19)

Yeah. Yeah. You said don't I wouldn't judge yourself too harshly. I was I

Sam (30:24)

was Right?

Scott Benner (30:25)

Oh, I don't I'm know I was just like, oh, what is happening? I I was like, I started saying, have to move, and she goes to where? And I'm like, I don't know.

Sam (30:35)

That's awesome. I love that.

Scott Benner (30:37)

It just it's been I I've been alive too long now. Do know what I mean? So I'm like, I'm a fairly competent person. I'm not in a great shakes, but I'm fairly competent. You put me in charge of something, I'll get it done for you.

If I don't know, I'll figure it out. I don't think I've ever looked at a person and thought and said to them, uh-uh. I guess we'll just all just give up and lay down. You you know, like, I what in the hell? Ugh.

Anyway, I would At

Sam (31:03)

least pretend like you're looking for the answers.

Scott Benner (31:05)

I just want you to know that if I was you, they would have arrested me in that hospital. Yeah.

Sam (31:10)

It was it was bad.

Scott Benner (31:12)

Yeah. I think you did fine is what I'm getting at. But go ahead.

Sam (31:14)

Well, I appreciate that.

Scott Benner (31:15)

Yeah. Yeah.

Sam (31:16)

Mean, after that, like, they never sent in another social worker. They had many more breakouts, but they did not send anybody else in.

Scott Benner (31:24)

And and

Sam (31:24)

I explained oh, yeah. I explained to the social worker too also, like, I am my child's voice. He doesn't have a voice. He can't even stay awake for more than five seconds at at this point in his life. Somebody's gotta speak up for him, and that will be me.

And you're telling me that he has this disease that he's going to have to have or this disability that he will have for the rest of his life. Somebody's going to have to be in his corner and that's me.

Scott Benner (31:52)

Yeah. And not for nothing. I still look like I looked at my high school graduation photo. So there's a lock oh, if that social worker would have come into my room, Sam, they would have had to call a hostage negotiator after that. Okay.

I would have been like I would have been like, that's enough.

Sam (32:10)

That's enough. Yeah. We're done here.

Scott Benner (32:11)

She can't come back out now. How's that sound? Someone send somebody in here with a goddamn brain in their head because I can't do this anymore with you people. Right? I'm sorry.

Go ahead. Oh, we gotta get past this part. No. You're good. After

Sam (32:27)

that, I think it was really, honestly, a couple of days later, I think they were just tired of me being in the NICU because they ended up moving us to the pediatric floor, and he was the smallest and youngest child on the pediatric floor. And many of the nurses kept saying, we've never dealt with a baby or a child this small or this little or this young.

Scott Benner (32:49)

Mhmm.

Sam (32:50)

And I was like, what are we doing here?

Scott Benner (32:52)

Yeah.

Sam (32:52)

But then it was like, when we were on the NICU floor, they're like, we don't typically handle diabetes. Like, they were bringing pediatric nurses from the pediatric floor into the NICU to be able to care for him.

Scott Benner (33:03)

Mhmm.

Sam (33:04)

But then when we went to the pediatric floor, they were like, we don't really know what we're doing here. And I was like, I just wanna go home. I thought it's right.

Scott Benner (33:11)

I got kicked out of the hotel I was in previously. I think I think this is where they put me. Yeah. Yeah. By the way, what what bay are we in, by the way?

Because

Sam (33:21)

Right.

The Diagnosis: KCNJ11 Mutation

Scott Benner (33:22)

Well So so so okay. So now, I mean, you you get this back. Like, can I read this here? A k c n j one one mutation is a change in the k c n j one one gene, which gives instructions for making part of the k a t p channel in pancreatic beta cells. That channel helps the body decide when to release insulin.

If the gene is altered, the channel may not work normally, so insulin can be released too little or too much depending on the specific variant. Does that all sound right to you?

Sam (33:52)

Yes. Okay. Yes. That is actually correct.

Scott Benner (33:54)

And he gets not enough? His variant is not enough insulin. Is that right?

Sam (33:59)

That is correct. Okay. So we went home when they finally discharged us. We still went home on a sliding scale because this lab still hadn't been back by that point.

Scott Benner (34:10)

Oh, okay.

Sam (34:11)

We had to drive up there. I believe it was, like, every other day. We had to drive up there. Every day, we had to talk to them to let them know his sugars, what he ate, and everything. We were doing checks every two hours.

By month two or three of us being out of the hospital

Scott Benner (34:30)

Mhmm.

Sam (34:30)

Mind you, he's we were in there for quite some time, and we're approaching our first birthday. That was actually, no. I believe he was closer to 14 old, I think is what it was, is when we finally got the lab back, if I remember correctly.

Scott Benner (34:50)

You should've tried Uber Eats. They're pretty quick. I mean Right? Am I right to say he could have had neonatal diabetes or congenital hyperinsulinism? Is that right?

Is it the two things that could have Correct. Right. And the insulin by the way, the other one, congenital hyperinsulinism, other cause beta cells to release too much insulin. I mean, that's I don't know. I'm I think I'd choose not enough before too much if you made me pick.

You know what I mean? Jesus. Yes. So what is this technically? Is it neonatal diabetes then?

Sam (35:23)

That is correct. When the lab came back because he was they just said, yes. Type one diabetes. Even though they knew it wasn't Mhmm. But until they could get those answers, they couldn't for insurance purposes, they couldn't just put whatever on there.

So they just gave him type one diabetes. And then when the lab came back, we both of us had to attend this meeting or this appointment, and they explained that he is a neonatal diabetic with a KCNJ eleven gene mutation, and that one in six hundred thousand babies are born with it.

Scott Benner (35:58)

Oh, jeez. Awesome. Yeah.

Sam (36:02)

And I got that one.

Scott Benner (36:04)

Yeah. I got that kid. I made that kid all by myself. Yeah. Thank you.

Anybody out there listening who wants to give me too much credit, I just want you to know that I just, you know, typed explain k c n j one one mutation into a browser. And and I'm just very good at reading and sounding like I'm it's coming out of my head. In case in case you're all just like, oh my god. Scott knows so much about things. I I really don't.

I just I found myself saying it with so much confidence. I was like, I should be clear. Just threw that into chat GPT real quick. So and by the way, I only use chat GPT when I'm when I'm recording because the font is bigger. Anyway, that's neither here nor there.

So Jesus. Is there anything else that comes with this mutation, or is this thing with the insulin, is it is it the entirety of its impact, or are there other things?

Sam (36:56)

So with my son specifically, he really just has the one mutation, but there are other kiddos out there that I found on, like, mommy diabetic support groups where they have, like, additional things attached. And I knew you were gonna ask me this question. I meant to look up what the other one was, but, like, they have other mutations with it or they have additional, like, a disease that is a side effect or a symptom of the KCNJ eleven. K. He does not.

He strictly just has this. Now, obviously, we monitor for the other things when he goes for his appointments, but there's never been any flags that's been waived to lead us to dig deeper into seeing if he has those. Mhmm.

How Glyburide Replaces Insulin

Scott Benner (40:22)

That's funny. You know, moving forward, I mean, I I I'd be remiss if I didn't ask you a little bit about raising a tiny little baby on insulin. Like, what was that like? You know, were there did you have a CGM? You know, if not, when did you get it? Have you gone to pumping? You know, how have you managed over the years?

Sam (40:41)

Certainly. So when we first got home, he was still on his sliding scale because we didn't have all the answers that we have now. Every two hours, we would have to he never wanted to wake up. He's always, even to this day, been a really good sleeper. We would have to force him awake to do his feedings and to do his insulin shots.

We would give him his insulin beforehand, let him eat, and then wake him up two hours later. And that was just a a really vicious cycle, but we made it through. We got through it.

Scott Benner (41:13)

Yeah.

Sam (41:14)

Dad and I, even though his dad's just the only one working, we he would even wake up with me even though he had to be up at work by 08:00 in the morning and everything else. He because he knew I needed a little bit of the extra support until I no longer needed that extra support

Scott Benner (41:29)

Mhmm.

Sam (41:30)

Which was really great. And then about and mind you, we're still doing pokes by with a baby, you have to do them on their heel instead of their finger or at least my baby because his fingers were too small. So we were doing his heel. By the time he started walking, that's when we had to switch to the actual finger because they were worried about dirt getting inside of an open wound even with a Band Aid on there. And then about 17 or 18 old, we were finally approved for the Dexcom for an like, the FDA actually approved us because at this time, they were not approved for anybody under the age of two.

Scott Benner (42:10)

Okay.

Sam (42:10)

So we had to go through a lot of hoops to be able to get that. And with his condition being what it was, everybody wants to study it. Everybody wants to know all the ins and outs because he is actually the only the fourth patient ever in Iowa to be diagnosed with what he has, and he was diagnosed eight hours after he's born. So, nationally, he is the youngest child that's diagnosed with what he has. So everybody was, like, getting everything that they could task for us to be able to have all these tools such as, like, the Dexcom g six at that time and everything.

Scott Benner (42:48)

Wow. That's a lot to go through. It it just genuinely is. How's he doing today?

Sam (42:56)

So today, he actually, by the time he turned two, we found out that we would be able to switch him to an oral medication called glyburide.

Scott Benner (43:09)

Mhmm.

Sam (43:10)

And he they the pharmacy and there's only one pharmacy beside the University of Iowa within a four mile or four hour radius of us that can make his medication the way that it needs to be made. He takes it by mouth twice a day, and he's been on that since he's been two. So no insulin. Well, let me take that back. He only gets insulin if he's above 300 for three hours or more or ketones are present.

Scott Benner (43:41)

Okay.

Sam (43:41)

We've given him insulin four times in the past two years.

Scott Benner (43:48)

Okay. I so I was reading about this earlier, but, mean, help me a little more with that. So it's a sulfonylurea pill. Is that right?

Sam (43:57)

Originally, yes. It comes in pill form, and then they compound it. The pharmacy compounds it into a liquid form for him.

Scott Benner (44:04)

I see. And the drug acts is this right? The drug acts on the same potassium channel pathway. Long term studies have shown this can be effective for many patients switch from insulin to the pill under special supervision. Do have any idea why that works for him and doesn't work?

It's something about unlocking I'm gonna need your help if you know. But, like, there's something right about this mutation that's, like, stopping the transfer of I'm out of my depth here all of sudden. Can you tell me more about how this all works?

Sam (44:32)

So the best way that it's been ever been explained to me is a type one diabetic, as most people know, not everybody, but most people know, is insulin dependent. A type two diabetic is is more manageable because they are not insulin dependent. It can be managed for the most part and for some people through diet. Then there in the middle is Elliot. That's my son's name.

I'm sorry. I never said his name. Elliot. He has what they consider even though he's a neonatal diabetic, he's treated as if he's a type two diabetic, and the glyburide is not insulin. It just gives the pancreas a little bit of a boost to keep morphing.

Scott Benner (45:16)

Okay. I mean, is that generally does he still does he wear a CGM?

Sam (45:21)

Yep. He wears the Dexcom Okay. G seven.

Scott Benner (45:24)

Okay. What happens if he doesn't take the pill? Like, what if you forget the pill one time?

Sam (45:28)

So perfect example I mean, we've never forgotten his medicine, but a perfect example, yes no. I'm sorry. Easter, so Sunday. Mhmm. So he gets it twice a day.

He gets a dose in the morning, and then he gets a dose at night. He got his dose his evening dose, and usually it's about 05:00 when we give it to him. He gets it about 05:00, and then he can eat a half hour after he has it. So we did five o'clock. He was eating by 05:30, 06:00 approximately.

07:00, his sugar was 350.

Scott Benner (46:00)

Mhmm.

Sam (46:00)

He's going through a growth spurt right now, so we we've had to increase his medicine and haven't found the right dosage yet for it to keep up. So at that time, we had to give him insulin because his glyburide wasn't keeping up with what he had eaten for supper and everything, and his pancreas just wasn't kicking in. And we go through spurts where, like, sometimes his pancreas will work really well, and our max is 11 without any type of medication needed. And then there's been days where we've been hospitalized because it's just not working at all. Insulin's not working, and glyburide's not working.

Scott Benner (46:38)

I see. Is this expected to shift throughout his life?

Sam (46:42)

So when he was first born, they told us there was a seventy five percent chance that he would outgrow it. By the time he turned two, it turned into a fifty percent chance. By the time he turned four, it turned into a twenty five percent chance. And now we've just kinda given up on asking because if it was gonna happen, we kinda feel like it would've, and we've gotten over the hard part now.

Scott Benner (47:05)

Okay.

Sam (47:05)

And they did say there's a chance of it, like, him outgrowing it, but then coming back later in life, especially as a teenager.

Scott Benner (47:13)

Wow. I don't normally like to do this, but I'm gonna read this because I think it's super interesting. So functionally, glyburide works because it bypasses the broken glucose sensing step and directly pushes the beta cell toward insulin release. In KCNJ one one disease, the problem is usually that the kATP channel stays too open, so the beta cell membrane stays too quiet and does not depolarize normally when glucose rises. That means calcium does not enter well and insulin granules are not released.

In plain language, normally glucose enters the beta cell ATP rises and the kATP channel closes. Closing that channel causes membrane depolarization. Depolarization opens voltage gate calcium channels. Calcium flows in and triggers insulin secretion. With an activating KCNJ eleven mutation, that channel does not close properly when ATP rises.

So even if glucose is present, the cell behaves like it is still at rest and insulin release is blunted. The glyburide binds to the s u r one part of the same k t p channel complex and forces the channel more towards the closed state. So instead of relying on the defective ATP signal to close the channel, the drug chooses it pharmacologically. Drug closes it pharmacologically. Once the channel closes, the cell can depolarize, calcium can enter, and the insulin can be released again.

That is the core reason about how it works. That is really fascinating and interesting and so strange. That one little mutation stopped that odd thing from working. Like, that little tiny thing that happens for people you don't even think twice about. How about that?

Sam (48:55)

And especially for it happening to it's just somebody so small and so new to the world Yeah.

Scott Benner (49:02)

As well. Yeah.

Sam (49:03)

Like, their body hasn't had any wear and tear

Scott Benner (49:05)

at all. Yeah. No. Right. Just it's just that it's that mutation.

And it's the one in what'd you say? Six hundred thousand?

Sam (49:12)

Yes.

Scott Benner (49:12)

Gosh.

Overcoming Trauma & Breaking Generational Curses

Scott Benner (37:44)

Okay. Well, well, that I mean, so I guess you count yourself lucky there. Right? Yes. I mean, how do you do you seem reasonably upbeat.

How do you like, were you always this way, is it a is this an attitude you've grown into over time?

Sam (37:57)

So this is my favorite question. I love when people ask it. My sister and I had a really, really, really crappy childhood. It's like, think of the worst thing ever and then times that by, like, 50. I am just adapted to environments.

I mean, we've lived in 60 some houses that I can remember, 10 schools. No. Seven schools, 10 states, child abuse, the whole nine yards. We went through it all, and I just decided I wanted to be a better person in life than what I was given and handed.

Scott Benner (38:33)

Okay.

Sam (38:34)

And I wanted my child to have a better life. And the entire time in the NICU, they kept saying, like, I'm surprised you haven't broken, like, more or, like, completely lost it because my minor combustions were just minor. Mhmm. And I explained to them, and I will explain this to anybody to this day. It's not about me.

I have to be strong for my child, and he's looking up to me all hours of the day. And I wanna be the best role model I can be for him because I didn't have that.

Scott Benner (39:04)

Yeah. I mean, I don't have all the details about you growing up, but I can tell you I didn't grow up well. And I often have a feeling of, like, this is not even the worst thing that's happened to me, like, you know, this year. Or, you know, you should have been around when I was 15. Like, that was that was that was tough.

You you know? So Yes. Yeah. I mean, I get your point. You have a lot of perspective.

Right?

Sam (39:26)

Yes. Yeah. And I just I want him to just to learn okay. He sees mom being a good person. He sees dad being a good person, doing kind things, doing good things, good deeds.

I want him to learn from that.

Scott Benner (39:40)

Yeah. So this is why you use a different name than the one you were given? Because you don't wanna have attachment to your upbringing. Is that right?

Sam (39:48)

No. I use a different name than the one I was given because I used to be a bartender, and I am a part time nine one one dispatcher. And I got tired of people saying it incorrectly, and most of my 911 calls would be, oh, how did you get your names?

Scott Benner (40:03)

Like, hey, lady. You're upside down in the car right now. Why don't you focus on that? Okay? What an interesting name.

Shut up. Yes. So you're like, just call me Sam.

Sam (40:15)

Yeah. Pretty much.

Scott Benner (52:50)

I'm gonna ask a couple more questions that you can feel free to say no to. Because I feel like we understand the gene mutation thing and that whole process. I'm good, and we have a little more time left. So how much of your upbringing would you be comfortable talking about?

Sam (53:04)

I'm an open book.

Scott Benner (53:05)

I mean, so how many you're one of how many kids?

Sam (53:10)

So my mom has three girls. My dad has oh, let me think here.

Scott Benner (53:18)

Are you under the second hand?

Sam (53:20)

Yeah. Yeah. He has, like, 10 kids, but some of them, like, aren't his, but he helped raise them so he considers them his.

Scott Benner (53:30)

Is he an incredibly handsome man?

Sam (53:33)

I mean, I guess.

Scott Benner (53:34)

Is he well is he wealthy? No. No. Had he

Sam (53:38)

Well, he makes money. Don't get me wrong.

Scott Benner (53:40)

But, I mean, that's he has 10 kids spread out over how many people?

Sam (53:45)

Three.

Scott Benner (53:45)

Three people, 10 kids, and he was abusive to you?

Sam (53:49)

So he was not, but his second wife

Scott Benner (53:55)

Wait.

Sam (53:55)

Was very abusive.

Scott Benner (53:58)

So did you live with him when he was married to her?

Sam (54:01)

So my dad, yes, dad. My my parents, my entire childhood went back and forth on who had custody of us. Up until about fifth grade, my dad my mom had custody of my sister and I, and my dad actually kidnapped us and moved us to a southern state.

Scott Benner (54:22)

Sam, why didn't you lead with that an hour ago? We would have never even talked about your kid's diabetes. Oh my god. Wait. You were wait.

So what's alright. So anytime I just wanna say this is a generalization, but anytime the kids end up with a dad for any reason, I'm always baffled. So what's up with your mom? Because you're talking to her now, but what was wrong with her back then?

Sam (54:41)

So my mom had her first child. So my oldest sister, she had her when she was 15. So she was a a mom at a very young age. Her dad ended up getting custody of her because my sister is of a different race, and that was a very big thing during the nineties when we were born.

Scott Benner (55:00)

Your mom's father has custody of your sister.

Sam (55:04)

No. No. No. No. I'm sorry.

My oldest sister's father had custody of her.

Scott Benner (55:09)

I see. Okay. Your oldest sister's so she's oh, This is okay. So your sister is you're connected to your sister through your mother, but you two have different fathers?

Sam (55:20)

Correct. And

Scott Benner (55:21)

he got custody of her due to her race? Yes. She wasn't being treated well in Whiteyville where you live? Is that what you're trying to say? No.

No? No. What happened? Okay. No.

Okay.

Sam (55:35)

I I'm trying not to offend anybody.

Scott Benner (55:38)

Oh, good luck. Maybe maybe you should stop talking then. Okay. Right.

Sam (55:43)

He had several, like, political parties that backed to their side of the family and ended up getting custody of her saying that a white mother couldn't raise a child of another race

Scott Benner (55:58)

Okay.

Sam (55:59)

Because that just wasn't a thing then.

Scott Benner (56:01)

And can I be honest? It doesn't sound like your mom couldn't raise you because she was white. It sounds like but does sound like she couldn't raise you. I just don't know why. There were problems for sure.

Okay. So that's all crazy. Yes. Alright. So

Sam (56:12)

And and, like, her age definitely played a part into it, and there there was a lot of other factors, but that was, like, their defense that they stood on

Scott Benner (56:20)

was I

Sam (56:21)

the the difference.

Scott Benner (56:22)

But when your dad comes and and kidnaps you, he takes her too?

Sam (56:27)

No. No. No.

Scott Benner (56:28)

No. Oh.

Sam (56:28)

Her dad her dad had custody of her by the time she was four.

Scott Benner (56:32)

Uh-huh.

Sam (56:33)

We were just back and forth between my mom and my dad up until I was in fifth grade, and that's when he took custody or he had kidnapped us. The reason my mom ended up not really losing custody, but she went through and she had lost her job. She ended up getting evicted from her home, and she didn't want us to be essentially homeless. So my my that first time, my mom had given my dad a scroll so that way we had a roof over our head because she had nowhere to go with us.

Scott Benner (57:08)

I see. Okay.

Sam (57:08)

She was living in her car for some time.

Scott Benner (57:10)

Your mom's living in her car for a long time. Your dad now has you and he's got custody of you. He gets remarried. That lady starts abusing you?

Sam (57:19)

Correct. My sister got it the worst because she is a stunning image of my mother, burns with a curl iron and everything. My mom obviously gets DCFS involved, has all this documentation, and essentially ends up going to court, and she ends up getting custody of us back.

Scott Benner (57:36)

Okay. Were you ever abused?

Sam (57:38)

Because when she had given us to our dad, she had signed over not really, like, signed over all her rights, but stated, like, she was not fit to be able to provide for it at this time and is giving temporary guardianship to my dad.

Scott Benner (57:50)

Gotcha. So then the abuse gets, allows her to get you back. Were you abused as well?

Sam (57:55)

I was, but not to the extent that my sister was.

Scott Benner (57:59)

Oh, okay. She burned her with a curling iron and things like that?

Sam (58:02)

Cigarettes. There was a few instances where she was pushed down some stairs.

Scott Benner (58:08)

Drugs involved at all?

Sam (58:11)

Yes.

Scott Benner (58:11)

Yeah. I mean, it sounds

Sam (58:13)

like Heavily.

Scott Benner (58:14)

Yeah. Okay. Your dad didn't step in?

Sam (58:17)

My sister in 2017 had a huge psychotic break and ended up going to the psych ward, and he she had to to be able to be released, she had to because it's court ordered, she had to attend, like, therapy and family therapy. Mhmm. He has stated in, like, his therapy sessions because they're, I mean, they're no longer married. Yeah. That he had no idea that it was ongoing and, like, he, you know, he was really messed up.

He's now twenty some years sober.

Scott Benner (58:44)

Oh, good for him.

Sam (58:45)

And he is, like, trying trying to rekindle the relationships.

Scott Benner (58:49)

What kind of drugs are we talking about?

Sam (58:51)

Think of the hardest thing you can think of and all the other things combined.

Scott Benner (58:55)

So we're looking about meth, heroin, stuff like that?

Sam (58:58)

Age, I do not know about, but the others, yes.

Scott Benner (59:02)

Yeah. My gosh. Well

Sam (59:04)

I believe a few times, fentanyl was involved as well.

Scott Benner (59:07)

Oh, yeah. Yeah. Sure. Let me just get right to the source. And and nothing was any of the abuse sexual?

No. Okay. Gosh. No. No.

No. I mean, I can you imagine the situation you're in where where you're like, oh, well, there's good news. Yeah. Jesus. Wow.

Well and did any of that have anything to do with you your relationship? Like, when you I mean, five years older when you're 20. Like, so you were dating an older guy when you were younger. Why? Because you were looking for, you think, like, stability, like, better decision making than you were than you had access to?

Sam (59:43)

I mean, we worked together. We were friends for a little while before we actually started dating, and I was just attracted to him. And, actually, if I'm being honest and he actually knows this. My friend and I were playing making bets on to see who they could who could get with him before the other. And then it turned into a ten year relationship.

Scott Benner (1:00:06)

Gonna say, do do you see this as you having won that game or losing it?

Sam (1:00:11)

Right? But yeah. By the time my dad had kidnapped us, you know, fifth grade, it took my mom two years and two to four years and a $140,000 for her to be able to fight the sports to get us because Illinois would not cross over into state lines. And mind you, we were in Mississippi, and that's several state lines.

Scott Benner (1:00:37)

Can I just make a public service announcement? You you don't need kids. You you know what I mean? Like, do it look into yourself for a second and say to yourself, am I the kind of person who's gonna burn somebody with a hair curler? Am I, the kind of guy who might, you know, do meth on a Wednesday afternoon?

Maybe I don't need a baby. You know what I'm saying? Like, please. Yeah. All of you.

Just please. It's okay. Yeah. Making this podcast has been one of the best and worst experiences of my life. I have to tell you, like, there's there's times when you hear stories like that and you just think, that is not part of my reality.

And it's hard to believe it's real, but you talk about it with, like, such, like like, it just feels so normal for you. Do you know what I mean? Like, when you're talking about it. If you wrote that story down and had me tell it, I'd be sarcastic and ridiculous, and I'd be like, can you believe this? How does this happen?

Blah blah blah. And you're like, no. No. That was Tuesday. That that would happen all the time.

Okay. You know what I mean? I it's very I'm so sorry for you. But but at the same time, and the reason I kinda wanted to bring it up and what I'm gonna close here with is, did you you do therapy to get through this? Was it just a conscious decision you made?

I mean, how is it you're not drunk or high right now? Like, what what do you attribute all your success to?

Sam (1:01:55)

So I actually did not have, like, a huge psychotic break. My sister's was in 2017. Mine was in 2014, actually, but right before I met my son's father. Mhmm. My boyfriend died on a motorcycle accident, and I started drinking heavily.

Because growing up, I mean, we had seen all this stuff, so we both said, like, we'll never do drugs. We'll never drink. 2014, my boyfriend dies. It's my senior year. I'm graduating or had just graduated.

So then I started drinking heavily, and then I actually decided, like, I don't wanna do this anymore. Like, I'm better than this.

Scott Benner (1:02:33)

Mhmm.

Sam (1:02:34)

And I don't want to go down the same path as my parents did and everything. So I just started doing better. And then after my son's father and I had separated, I I didn't know how to be a single mom because, I mean, I I've been with this guy since I was 18, and then all of a sudden, I'm got this date or not really dating, but this toddler. I'm on my own. I'm starting from the ground up.

So I did seek out therapy after we separated. I believe it's been 2022

Scott Benner (1:03:06)

Good for you.

Sam (1:03:07)

'21, '22.

Scott Benner (1:03:08)

Yeah. Good for you.

Sam (1:03:09)

And they gave me some healing or some helping tools, and now I'm here.

Scott Benner (1:03:15)

Yeah. Good for you. That's really awesome, Sam. Congratulations. That's a very adult decisions you made.

And you think you made them for you, or did you make them for your son or a little of both?

Sam (1:03:24)

I would say the personal growth would 100% be for both of us, but mostly, it is so he has a better life than I had.

Scott Benner (1:03:34)

Sam, you broke a circle. I You must be very proud of yourself. Alright. We gotta get her to move some more wait. Sam, hold on.

Sam, so you're we get we do have to get you better Internet though. I said you must be very proud of yourself.

Sam (1:03:49)

Yes. I am.

Scott Benner (1:03:50)

Good for you. That's awesome. Wow.

Sam (1:03:53)

I'm all about breaking all the generational curses that I can.

Scott Benner (1:03:56)

Yeah. No fentanyl for you.

Sam (1:03:59)

No. And, like, people say it's weird that my son's father and I have this great co parenting relationship where we have Christmas together. Sometimes we go on vacations together. Why is it weird? Is it because society tells us it's weird?

Because if he doesn't go with or I don't go with, then we're missing out on the excitement with our child. We're missing out on an experience with a child, making core memories with our child. Yeah. Why does society say it's weird?

Scott Benner (1:04:26)

Well, listen. On top of that, I'm I'm gonna do a little guessing here. You'll stop me if I'm wrong. Right? But it doesn't he probably didn't grow up great either.

Is that right?

Sam (1:04:35)

Correct.

Scott Benner (1:04:36)

Yeah. So you're two people who came from bad circumstances who both decided that's not gonna be who we are. You guys probably just got together too early. If you made me break down your relationship, it sounds to me like you were, you know, two people who found each other and probably supported each other getting through all of this crap that people put on you when you were younger. And then you get to a certain point where you realize, had we not been thrown together like this, we probably wouldn't know each other, and this probably wouldn't be a relationship that we had.

And so then you very healthily separated, but kept yourselves together when your son's involved. And, I mean, honestly, this might be the healthiest healthiest thing I've ever heard in in my life. That really does make a lot of sense to me. Am I getting that about right, do you think?

Sam (1:05:25)

A 100%.

Scott Benner (1:05:28)

Yeah. I I mean, I've been doing this for a while. You you know? So this is the part where someone leaves a review later that says, he's so full of himself. I yeah.

I just heard he she tried to tell her story, but he made it about him. It's a conversation. I'm just bringing stuff up. I saw your review. Go to hell.

Okay? But I think it's possible my sarcasm doesn't translate to everybody, Sam. Do you know what I'm saying?

Sam (1:05:53)

Oh,

Scott Benner (1:05:54)

yeah. Yeah. Yeah. Neither here nor there. That that really is, that's really well adjusted decision making on both of your parts.

Like, do you think if you guys would have met when you were 30 and you had normal lives, do you think you would be together, or do you think you wouldn't have enough in common to be together?

Sam (1:06:10)

You probably wouldn't have really enough in common

Scott Benner (1:06:14)

Yeah.

Sam (1:06:14)

Honestly.

Scott Benner (1:06:15)

Yeah. You're like two people who were stuck in a bank robbery together and you hung out for a year after that until the trauma was gone and then you went your separate ways. Yeah. Yeah.

Sam (1:06:25)

Yeah. That's kinda nice. I would agree with that.

Scott Benner (1:06:27)

Yeah. Now, Sam, here's the last question. Are you dating? Are you looking for a person? Are you happy single with a 10 year old?

What what what is your play?

Sam (1:06:36)

So I after we split up, I was adamant about, like, working on myself, just being me and my son. I had just started at nine one one dispatch. I became really good friends with one of the officers, actually several of the officers, and him and I were just friends for several months. And we are going on to year three of dating.

Scott Benner (1:07:01)

Goddamn, Sam. You are a success story. This is it. Well, I appreciate that. From fentanyl to happiness, the Sam story.

Yes. Sam's not her real name. We put that in parentheses at the end. It'd be awesome. Oh, I'm so happy you did this.

What made you come on the podcast?

Sam (1:07:17)

A lot of people kept saying, like, when I would comment or post in there about his genetic mutation because it's so rare. A lot of people just kept saying, like, they wanna hear our story.

Scott Benner (1:07:27)

Yeah. Oh, I'm glad they said that, and I'm glad I was smart enough to listen. Look at me giving myself credit for answering your email. Well,

Sam (1:07:36)

it is definitely appreciated. I love sharing our story and educating people because I mean, a lot of people know type one diabetes or know about it. A lot of people know type two or know about it, but then there's that neonatal that nobody's ever heard of.

Scott Benner (1:07:51)

Yeah. And that if you if people ask you, you you would say my son has neonatal diabetes. Is that how you would answer? Or do you talk about the gene do you talk about the gene mutation, or is that over people's heads usually?

Sam (1:08:01)

I do include it because I wanna educate, and I wanna educate properly as much as I can. And I just try to explain them, like, he's a neonatal diabetic with a KCNJ eleven gene mutation. It came from him or it came from his dad and me or his dad or just me, and one in six hundred thousand babies have it, and that's all the answers that I really have. But I'd be more than happy to look into it further and provide you with more in more answers if you have any questions.

Scott Benner (1:08:30)

Sam, I am gonna do my square best to keep this podcast going for ten more years so I can interview you again when you're 40. I would love this. I feel like

Sam (1:08:39)

be there.

Scott Benner (1:08:40)

Yeah. I feel like you're gonna really be a a person who looks back and doesn't recognize who they were twenty years before. I'm I'm super excited.

Sam (1:08:50)

Even to this day, I don't even, like, recognize who I was when I would when I got kidnapped or, you know, like, even before then.

Scott Benner (1:08:58)

Yeah. Seriously. Good for you. I'd clap if I didn't think it was reductive. I mean, I'm seriously happy for you with the decisions you made and and all the things you've been able to accomplish.

Really, sincerely.

Sam (1:09:10)

Well, I absolutely appreciate that.

Scott Benner (1:09:12)

Yeah. Congratulations. That's wonderful. Okay. Alright, Sam.

Thank you so much. I I really appreciate this. Hold on one second. Okay?

Closing & Outro Sponsors

Scott Benner (1:09:26)

A huge thank you to Cozy Earth, a longtime sponsor. Cozyearth.com. Use the offer code juice box at checkout. You will save 20 percent off of your entire order when you use that code. Don't let me down kids.

Head over there now. Get yourself some joggers, some towels, some sheets. Save yourself some money. Support the podcast. Make your life beautiful and comfortable all at the same time.

Cozyearth.com. Use the offer code juice box at checkout.

Dexcom sponsored this episode of the juice box podcast. Learn more about the Dexcom g seven at my link, dexcom.com/juicebox.

This episode of the juice box podcast is sponsored by the Omnipod five. And at my link, omnipod.com/juicebox, you can get yourself a free what'd I just say? A free Omnipod five starter kit. Free? Get out of here.

Go click on that link, omnipod.com/juicebox. Check it out. Terms and conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox.

Links in the show notes. Links at juiceboxpodcast.com.

Hey. Thanks for listening all the way to the end. I really appreciate your loyalty and listenership. Thank you so much for listening. I'll be back very soon with another episode of the Juice Box Podcast.

If you're looking for community around type one diabetes, check out the juice box podcast private Facebook group, juice box podcast, type one diabetes. But everybody is welcome. Type one, type two, gestational, loved ones, it doesn't matter to me. If you're impacted by diabetes and you're looking for support, comfort, or community, check out Juice Box podcast, type one diabetes on Facebook.

The episode you just heard was professionally edited by Wrong Way Recording. Wrongwayrecording.com.

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