Scott Benner 8/17/20 Scott Benner 8/17/20

#368 Benny and the Jets

Hope Not Pressure

Allison is the mother of a young type 1 and she's brought a few diabetes topics to talk about.

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

Scott Benner 0:10
Hello, everyone, welcome to Episode 368 of the Juicebox Podcast. Today's show is sponsored by the Contour Next One blood glucose meter and touched by type one, you can get a touched by type one.org. To learn more about my favorite diabetes organization, or Contour Next one.com forward slash juice box to learn more about the blood glucose meter that my daughter uses, I find it to be small, easy to use, easy to use at night, easy to get a second reading from if you don't quite get enough blood the first time right they've got those kinds of test strips and it fits nicely in whatever you carry your diabetes gear in the Contour. Next One blood glucose meter is spectacular for accuracy. And I think you should check it out. So while you're busy listening to Benny's mom, Allison today talk about a number of things including social media around diabetes, being hopeful and a lot of other stuff actually. Remember this. Nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please always consult a physician before making any changes to your medical plan for becoming bold with insulin.

Alison 1:26
My name is Alison. I am a mom to my daughter who is six. And my son, Benjamin, who would call Benny who is my type one diabetic. And he is four and a half. Excellent.

Scott Benner 1:45
Benny is four and a half. How old was he when he was diagnosed?

Unknown Speaker 1:49
He's that bad? And he Yes, that's him.

Alison 1:54
I see you later. She's going out with his baby. So right now. Nice.

Unknown Speaker 1:59
Yeah.

Scott Benner 2:01
How old? How old was he? Who the babysitter? Wait, hold on a second. Let's not get crazy for a second. Hold on. Let me slow down. Or give me Benny Benny was how old was diagnosed?

Alison 2:12
Benny was diagnosed last March. So it'll be

Scott Benner 2:18
1010 months? Yes. And how did you find the type one babysitter?

Alison 2:26
So we actually were I live in New Jersey, we have a great a type one diabetic, like mom group community. And so I sort of found her through the grapevine. And one of our friends recommended her and she's amazing.

Unknown Speaker 2:43
I'm very nice.

Scott Benner 2:46
So yeah, so we've had her for about six months. Now two. Interesting question. Did the babysitter know more about diabetes than you did? Or did she think of it different? I assume she that was sexist of me. I apologize is the babysitter.

Unknown Speaker 3:01
Is she Yes. She says yeah.

Scott Benner 3:04
I was right. Okay, but that's fine. But how is

Unknown Speaker 3:09
it? That's an interesting question. Mm hmm.

Scott Benner 3:12
That's why I asked it.

Alison 3:13
Because she did not know about your podcast, and I found your podcast maybe two or three days

after we came home from the hospital. Well,

Scott Benner 3:25
how did that happen?

Unknown Speaker 3:27
I think a little bit of desperation.

Scott Benner 3:31
Dear internet,

Unknown Speaker 3:33
please, please.

Alison 3:36
Um, yeah, so. So she wasn't really she didn't know about the techniques that you talked about? Okay. And I had already known so we had a, we had bit of different management styles. Mm hmm.

Scott Benner 3:52
And what ends up happening is it turned into an employee employer situation where you're like, just do it this way, please. Or do you kind of let her roll her way? Or how do you guys handle that?

Alison 4:01
I think it's a little bit of both. I think it's a little bit of both. I definitely give her a lot of leeway. But I don't let things get crazy. Obviously, don't let him hang out in the 250s 300 when she's with him. And she always asked me before, you know, can I give him insulin? I need to treat this low.

Unknown Speaker 4:22
So I would say it's a good mix. Nice.

Scott Benner 4:24
And she and she understands the you know, the the overarching ideas between you know about what's wrong, why how you would fix it, why you wouldn't want somebody to stay one way or the other. So it's good, right?

Alison 4:36
Yeah, absolutely. And I think the biggest thing is that she doesn't panic. Mm hmm.

Scott Benner 4:41
And that's what's super important to me. Ken, she charged more for having diabetes skills.

Unknown Speaker 4:47
She can she and she does, which is good for her.

Scott Benner 4:52
So like a diabetes tax on the on the hourly rate.

Unknown Speaker 4:55
Yeah.

Alison 4:57
Um, you know, and we have two dogs, too. So she also deals with that, oh my

Unknown Speaker 5:01
god, I just

Unknown Speaker 5:03
paid very well. Let

Scott Benner 5:04
me just tell you, if I had to take care of your two children and your dogs, and one of the kids had diabetes, I would want somewhere around $150 now,

Unknown Speaker 5:15
pay $250

Scott Benner 5:18
I'd be like, Listen, I can watch your kids for $1,000 a day round if we keep it under the table. But if we're gonna pay taxes, I'm more in the 1500 range, because you've got these dogs and these kids, and it's a lot of work. Now. I'm just I'm joking. But that's

Unknown Speaker 5:31
pretty chaotic.

Scott Benner 5:32
Of course. That's very cool. So do you have a babysitter because you de drinker, you have a job.

Unknown Speaker 5:38
So

Alison 5:40
I don't currently work. I have our babysitter come once a week. So when Danny was first diagnosed, it was crazy. Obviously, that's what happens to everyone. I pulled him out of pre K, I quit my job. I our whole world shifted when he was diagnosed, which I'm pretty sure happens to everyone. And so I have her come so that he, he's in pre k in the afternoons. And he gets to spend some time with someone else who's not me in the mornings. Yeah, which I think he enjoys.

Scott Benner 6:23
I would like to spend some time away from my mom when I was younger. So you're saying you're trying to pass this off as this is for Benny, not for you. And I like by the way that when I asked if you need a drink? You did not say no, Scott, I did not get a

Unknown Speaker 6:34
no. I'm totally a drink.

Scott Benner 6:38
Right. Now, but that's cool. So it's so that you get a babysitter once a week to give yourself a break and give him a break and let everybody sort of you know, find their own space.

Alison 6:48
Nice. Because Yeah, sorry to cut you off. But yeah, she has because she has diabetes. I don't have to think about diabetes. For the couple hours that she's with him.

Scott Benner 7:00
It's a little mental health thing.

Unknown Speaker 7:01
It's a little mental health thing. Yeah, for sure.

Scott Benner 7:03
I'm down. I like it. Okay, um, let's start slow. Benny was diagnosed, but he was only diagnosed 10 months ago, you found the podcast very quickly, which is interesting. Did you was that seriously through a Google thing? Or did you ask a person?

Alison 7:19
To me? No, it was not there a person I was definitely through Google. Or, you know, just searching, you know, Type One Diabetes on Apple podcasts.

Scott Benner 7:27
Gotcha. Um, what kind of technology is Benny using?

Alison 7:32
So Benny is MDI and he has a dexcom. He's had a dex

Unknown Speaker 7:37
Tom,

Unknown Speaker 7:39
honestly, for about seven months, eight months?

Scott Benner 7:43
How are you finding that that method?

Alison 7:49
We like it, we're used to it. He is sort of a creature of habit. And so he is really comfortable with the shots. Eventually, I mean, pretty soon. Now he's only in school half day. But when he moves to school, you know, when he goes to kindergarten next year, and he's in school for the whole day, I'd like him to be

Unknown Speaker 8:09
on a pump thinking about a pump. Yeah.

Scott Benner 8:12
Where do you inject mostly is it arms, legs, stomach excites us.

Alison 8:19
So our endocrinologist just asked us this.

And we mostly do his arms. It's really where he'll let us do it got to be honest. And we want him to be comfortable. So I don't really try and push it.

Unknown Speaker 8:32
And it works. Well, for us. Are they

Scott Benner 8:34
worried that it's being overused the spot?

Unknown Speaker 8:39
I do.

Unknown Speaker 8:43
But then I remember, you know,

Alison 8:46
right now hold a stick out his arm and let us give us a shot. Let us give him a shot. But I don't really want to hold him down again to try and give him a shot and his legs or his butt. So we don't do that to him.

Scott Benner 8:59
So back to the arms. Do you think it's out of sight out of mind? Because you're behind him? Do you think it's easier for him? I always used to think that like garden kid couldn't see it as much. So it felt more relaxing to her.

Unknown Speaker 9:10
Sure. And I think it's just habitual at this point.

Scott Benner 9:13
Well, so I'm really interested in this. Take a little bit of a sidebar for a second because she Arden was obviously really young when she was diagnosed. And just like you said, like you you build a habit with something like there, you start putting a pump somewhere. And then that seems like that's where the pump goes after a while like it's a rule almost.

Unknown Speaker 9:31
Right?

Scott Benner 9:32
And then you say, hey, let's put it here now and they're like, Whoa, that's not where it goes. And it brings anxiety. We actually got really lucky. This is gonna sound weird for a second. But Arden had to have a cyst removed. You know, she had to have surgery. And they were going to go in laparoscopically through her like a couple of small holes they made in her stomach. Actually they made 200 stomach and one right in her belly button which was freaky weird. And so she wears her palms on her stomach a lot. And I'm always like, hey, let's try other places. And she's stomach stomach, like either side of her belly button. And then her thighs, but her thighs don't work great. And so I'm always like, you know, we got to go back to your arms a little bit, which we hadn't done since she was really little. And she ended up getting away from because it was tough to play softball with it on her arms, because she was swinging your arms, right? She felt like the pod would wobble. And it felt like it was pulling and she didn't like that. So I'm saying, we don't get as good of control on the legs as we do on your stomach. And we can't just keep using your stomach forever. And I you know, explain the whole thing to her about why she understands why you can't just use the same places over and over again. And then when I'm like, let's use your arm. She's like, now, like, right away, I don't want to do that. You can see it it. It heightens your anxiety, it makes her it makes her frightened. So when she gets the surgery, we go in for the pre op consultation. I said the doctor so you know, she has an insulin pump. We can put it on her legs or stomach or arms. Obviously, you can't be on the stomach for the surgery. Where would you prefer? And because he because the surgery was going to be happening on our sides. They just didn't want to on our legs because they didn't want to lean on it or something like that. So the guys like arm. And I just, it was so hard for me to hold my smile. And when he said arms. I was like, Well, if that's what you want. We'll work that out. And I looked over at her super seriously. And as soon as he left the room, she looked at me and she's like, you're enjoying this because I have to use my arms for though I was like, No, I don't know what you're talking about. But I was so happy. You know,

Alison 11:36
your daughter is about to have surgery and you're smiling because I finally figured

Scott Benner 11:39
out a way to get her pump onto her arm. I was like well I when you know. And like it was some sort of like a Dorrance like I was like I sweated her out finally. And she's been back and forth on our arms now for a couple of weeks. And she doesn't mind it. So the only thing we have left to get over is her wanting to not like it. If that makes sense. You know, because she's our

Unknown Speaker 12:03
course.

Scott Benner 12:05
In this morning, we changed her pod before she went to school. And she's like, I think I can put it back on my stomach. And I was like, I don't know, I think it needs more time. But anyway, but anyway, this is a big problem for a lot of people, you know, because you just get so kind of like and it's I don't think it's something people think about but it happens with injections to with kids. You know, when I was growing up, my friend Mike would just bang them into his stomach like it was nothing.

Alison 12:31
A lot of adults do their stomach. Mm hmm.

Unknown Speaker 12:34
Yeah, I I've seen Yeah,

Scott Benner 12:36
it's a just grab a little fat. They're like, bang, they seem to think nothing. I don't even

Unknown Speaker 12:39
flinch. Right. My point he won't. He won't do that.

Scott Benner 12:43
No. Well, my point in telling the story is that you have to look for an avenue somewhere like you hear me joke with people sometimes like, you know, just buy them off, like give them money or toys like i a woman recently got her kid to use an insulin pump by buying them like a Lego set. It's like there's I know, I don't see anything wrong with

Alison 13:00
that. bribery is the key to parenting.

Scott Benner 13:02
I mean, if you want to do it easy instead of well, it's 100%.

Unknown Speaker 13:06
Right? Absolutely.

Unknown Speaker 13:08
Anyway.

Scott Benner 13:10
So you are on the show today. I remember you want to talk about kind of like fear and anxiety and social media like that kind of mix. But am I right about that?

Unknown Speaker 13:21
Yeah.

Scott Benner 13:22
Tell me what made you reach out.

Unknown Speaker 13:26
So

Alison 13:29
when Benny was first diagnosed,

I remember coming out of the hospital.

In a days, I was just in a daze.

Unknown Speaker 13:42
And

Alison 13:45
our endocrinologist, I have to say was really great. You know, he came into the room on the first day of diagnosis. And he said, Listen, Benjamin is a healthy kid with diabetes. And in a lot of ways, to us, that's how we live and it's true for us. But I couldn't pull myself out of the dais. And so part of what I did was I went online, found your podcast, people told me to join support groups and go online and find the Facebook group for your town or join all these Facebook groups. And so I did that. And I mean, he was home from pre K. So he was he was home a lot with me in the beginning. And I remember just sort of scrolling through social media.

And I remember it's actually scaring me a lot. I think. Sometimes it made things worse, and I was looking for some sort of answer for it to be okay. And when I went online, I was like, Oh my god, everyone else is freaking out too. And they're still freaking out. So it was like are they gonna Do we come out of this? Is there always is there always is there another side to this? And for what I could, from what I was reading, I couldn't see that. Which was funny because when I listened to your podcast, I remember the first time I listened to your podcast, Benjamin was taking a bath as he was in the bathtub. And it was his first few days out of diagnosis, I was looking at him. And when you come out of the hospital, you're sort of and this sounds horrible, but you're sort of ready for them to sort of, you're sort of ready for something really bad to happen at any second. Watching him and listening to your podcast and thinking, Man, this guy is he's so calm. Why is he so calm? He should be freaking out too.

Scott Benner 15:47
I can forget it. You want me to but

Alison 15:50
I mean, you were just you were talking about diabetes, like it was diabetes. And I hadn't really encountered that anywhere else.

Scott Benner 16:01
Okay. Well, I didn't know how you were going to answer the question. And I'm not gonna lie. I'm excited about how you answered the question. Because I'm glad Yes. I'm glad to respond. And I'll tell you, I'll tell you why. Because first of all, it's the internet, right? People don't go to the internet to say great things. That's not what the internet's for. The internet's for. Listen. It's for email. It's for pornography. And it's for complaining. That's what the internet is for. as near as I can tell in dating now that the the app world is and that's not even the internet it is but

Unknown Speaker 16:34
it doesn't even work well, so

Scott Benner 16:35
well. Everyone you know, you love it once in a while. We're like we met on Tinder and we're married now. Like, you're the one story of that, aren't you? But okay.

Unknown Speaker 16:45
Talk to you in a couple years. It's

Scott Benner 16:46
more like I met someone on Tinder. Now I hide in my house. But But No, but seriously, I know nothing about dating on Tinder. And I hope not to have to find out.

Unknown Speaker 16:54
We're both married. Yeah. Odds are

Scott Benner 16:56
though at some point, at some point, Kelly's gonna get sick of me and leave. So I'm probably gonna have to keep abreast of this a little bit. But, but no, my but my serious point is that there are so I think there's levels of thought, right? You can you can look at a problem and see the surface. And that's easy. Most people can see the surface. Every once in a while somebody gets confused and think they see one thing when they see another thing, you know, we talked about that sometimes, like the pencil in the pocket, kind of an idea. Like, right, you think you know what you're saying. But when you start chipping away at ideas, there's levels after levels after levels and things compound and they and they come in from all different angles and perspectives and and change the problem. Things are not easy, nothing is easy to understand, right? You need a wide view, you need to be calm, but most people look at something make a snap judgment, and then that's what they think of it. And in the you know, in the diabetes space in general. You know, there are some people who talk about it really thoughtfully. And you know, that's why I love Jenny. Because Jenny breaks things down. She She thinks on levels. She sees what impacts you know, from from places you don't notice. But then they're just some people will say things like, don't share your graph online. It makes people sad. Like, hey, how do you know that? It made you sad? It doesn't mean it makes people sad. It means it makes you sad. And you have a blog. So now that's a rule. You know what I mean? Like, I don't get that. And then I heard from someone recently. Oh, do you mind doing Arden's lunch real quick?

Unknown Speaker 18:35
No, I don't hold my writing or

Scott Benner 18:37
is it Alright, hold on, I first have to find out she's hungry cuz she's in the middle to the end of her period, and she has not been as hungry lately. We bolused really hardly for dinner last night. She's like, I could eat all this. gave her the insulin and like three seconds later, she's like, I don't want this soup. I was like you gotta be and now her friends are sending me pictures of themselves. Instead of instead of answering my question, oh, just

Unknown Speaker 19:05
past the phone time at school.

Scott Benner 19:07
Yes, I'm getting photos of people. Not insanely is the answer to my question. Are you hungry? sometime today, I want you to head over to touched by type one.org To find out more about my favorite diabetes organization. Their mission of course is to elevate awareness to type one diabetes to raise funds to find a cure and to inspire those with diabetes to thrive. They have all kinds of great programs and services and you can find out more about them at touched by type one.org at Contour Next one.com Ford slash juicebox. As soon as it comes up at that website I know a lot of English show for but at Contour Next one.com forward slash juice box. You're going to find right at the top of the page. A photograph of Arden's blood glucose meter It's hard to get excited about a blood glucose meter, right, but this one is inexpensive, it uses strips that work incredibly well and have a second chance testing. So if you touch the blood drop, but don't quite get enough, you can go back in again and try again without wasting the test strip. But honestly, you know, we can talk about the portability of the meter, how bright the light is, at night, the things that you are going to end up caring about. But what can't get lost in all this is the accuracy, this thing just works, right, you're gonna get a good, accurate blood glucose test with the Contour Next One blood glucose system. And if you want, there's even an app to help you make sense of all those numbers that goes to your Android or Apple phone. But if you don't want the app, it's okay, you can just use the meter. So with the app or without the app, you're going to be holding in your hand, a blood glucose meter, that's going to give you a number that you can feel confident about. And it's affordable. So if your insurance covers it, obviously, that's easy. But there may be some of you who find that the cash price for the Contour Next One blood glucose meter is less than what you're paying for your other meter through your insurance. All this is well worth the five minutes, it's gonna take you to figure it out. Contour Next one.com forward slash juicebox. There are links in your show notes, and links at Juicebox Podcast comm for this and all of the sponsors. I love this meter. It just works. It's easy. That's what you need. You need easy. You need works. This isn't rocket science. Life's tough enough. doesn't need to be made tougher by having some old 10 year old meter technology. It's giving you a number that you can't trust. Alright, that's it, we're gonna get back to the show, check out touch by type one.org Contour Next one.com forward slash juice box. You can fill your heart and upgrade your gear in just a few minutes with those links. Let's get back to Allison we'll finish up Arden's meal bolus, which actually comes back around again I've talked to, I'll end up talking to Arden again, a little later in the episode, we're gonna make a small adjustment for that meal bolus, but you'll see as it's happening, anyway, this is this conversation is really just getting going. I never say this inside of the ads for some reason, but thank you very much for supporting the sponsors of the Juicebox Podcast. They really are the reason in total honesty that I can keep the podcast going and free for you to listen to. And when you and when you click on the links, it helps. So thank you very much. Thanks for your support. And I hope I'm you know, I hope I'm thanking you for your support by bringing you good quality advertising, not just you know, not selling you a mattress or something like that. This is this is a stuff that you can use that I think most of you are going to find to be really valuable in your life. I was this little bad boy right there, but it comes out.

So let me thank bagel banana cookies. Grapes, cherries, she's gonna eat the grapes and the cherries, the cookies. 2035 bed sheets half of the banana 45 Why don't we do 55 carbs? People are like he got the 45 and then just added 10 for no reason. You're right. I did. Okay,

Unknown Speaker 23:50
so I'm gonna do

Scott Benner 23:52
I'm gonna have her do 50 carbs. But tell me if you eat that seems good. Mmm, I'd be fine. But Amanda

Alison 24:05
Arden is like my daughter in the sense of the eat the same thing every day.

Scott Benner 24:09
Yeah. It I don't think she wants to. But every time I take her to the grocery store, it's about once a month. This is a parenting skill I have, which is I am. I'm a hopeful person. It's funny, because if you knew me personally, you'd be like, I think Scott's not a hopeful person. I think he's like really cynical. But I'm super hopeful, right? I always think that people are going to do the best they can. And and I try things over and over again. When they prove out wrong. Doesn't matter. I'm like, this is right. I should do this. So my kids, I take shopping with me once a month and I'm like walk around the store. Find anything you want to try. I'll buy it. And every time they buy the same stuff. They never try anything though, and it never works. So I it's not that Arden's repetitive because I'm like, Look, these are the five things I buy. It's just she won't try Something new at lunchtime. But at any other point in her life, she mostly try anything. She's no real aversion to any food. But when you say take it to school, it somehow changes things for she's like, I just want these things.

Alison 25:13
Again, it's habit. And also I told my daughter, I say, look at what the other kids are eating or class. Is there anything that you like? Do you want to steal anyone else's lunch ideas? Anyone snack because I do not

Scott Benner 25:26
know it's okay. We made my son meatballs for years wouldn't touch them one day, he's at his cousin's house, they have meatballs, he was probably pressured into eating them. He comes home, he goes, Hey, you know what, I like? meatballs. My wife almost killed him. Like, I thought she was gonna, like, throw them out of a door. Like you don't I mean, like, She's like, wait, you we we've been throwing meatballs away for six years? You

Unknown Speaker 25:45
know, that's good peer pressure.

Unknown Speaker 25:48
Yeah, right. When peer pressure works. Wow.

Unknown Speaker 25:51
That could be the title of this episode, when peer pressure works.

Scott Benner 25:55
So okay, so back to the social media idea, right? People? Um, you know, they see something, and they just say to themselves, well, this is the answer. This was my first thought about this. And so this is the answer. And that's just not how things work. So, you know, so you see, a lot of times that happened, don't share your graphs, it makes people feel bad. Well, I happen to get to talk to more people than just my own thoughts. And what I hear overwhelming from people is, hear seeing someone do well, is hopeful. It's not, it doesn't beat you up. It doesn't listen, it's not great. It's not a great feeling to see like, oh, wow, there are people doing this. And I'm not if you choose to see it that way, what you should choose to see is, that's possible. And I say that on the show a lot. You see somebody doing better than you at anything, you should think, oh, that's possible. Don't be jealous of them be excited that that's the thing that happens. And you know, I it's not that a person with a flatter graph than you or a lower graph than you is lucky. They don't have a better kind of diabetes than you do. You know, like they just they know something you don't know, find out what that thing is.

Alison 27:09
And yes, absolutely let it inspire you and rip

Scott Benner 27:11
them off. Just like the idea of the lunches. Boy, this is really coming together, you would think I plan this? Seriously, it's one of my like, tiny superpowers talking and making things connect. I don't know how it happens.

Unknown Speaker 27:26
But that's impressive.

Scott Benner 27:27
Thank you. And another one of my superpowers is to get people to say nice things about me. No, but seriously. So I don't believe in that I don't believe in don't share your graph, I believe in share your graph, show people look, look at how well this is going and then say, I don't know how the heck I did this. Or here's how I did this. Or, you know, but don't don't just throw it out there and be like, I'm better at this new go to hell. Like that's not the point. Right? The point is to be, you know, an example for someone else. And anyone who sees that example and right away wants to erase it from the world. I don't trust them. Like, I don't, I don't like that idea. There's so much fear, like so now. People are afraid of their insulin, causing them issues with their blood sugar. And now we're gonna make them afraid of good examples. Like, why don't we just why don't we just drag them into a dark room and starve them to death? Like, what's the point? What's the point of being alive? You know,

Unknown Speaker 28:23
like putting them in a blindfold?

Scott Benner 28:25
Yeah, yeah, take them out to pasture. They're done already. Like it didn't work out for you on the first day. So give up. Like, that's how it feels to me. And so we're so busy protecting perceived ideas of what people's feelings are, that we don't bother trying or reaching. And I don't get that. So I don't want to be reactive, productive, productive. Reactive would be like, if I got a piece of paper, and I blacked out something I want to be productive, right. I think I redacted from probably all the news in the world. Anyway, I don't want to be I don't want to be reductive. Because there are some people who have anxiety issues. And I'm going to assume that those things are harder for them. But this week's episode of the podcast, which by the time you hear Allison, maybe, you know, last year was like Episode 293 or 294. with Megan, right? And Megan talked about her anxiety. But she also said in that episode, that she found it hopeful that other people were doing well. So don't put your bs on other people and decide what they get to look at and what they don't get to look at. And don't go out into the public and you know, and be nasty to people don't don't just run around going I'm doing better than you nananananana but you know, I don't know. I just I feel very strongly about this. I don't like when people dumb down this space. And it happens more often than it should I think.

Alison 29:51
Yeah, and I think there's also another sort of layer to it. When you're talking about the fear, and I think that's fear as a parent, which was Are you experienced with Arden, especially when she was younger? Um, I think people as bet once been he was I noticed. And as he as, as the D started to pile up, and you know, 10 months in now, and there are days that we don't think about diabetes all day long. Yeah, of course, we don't. We, I don't look at him and I don't think diabetes, I look at him. And he's funny, and he's funny. And he has this amazing personalities growing into this. Still little, but he's growing into a person. And I think some it's so hard for some parents, because they're so afraid, just sort of snap out of that, and see their kid as a kid, with diaper, eds and sort of not the other way around. And I don't know how you feel about that. But we've seen it on so many levels. Was there a time when you never thought this time would come? Oh, yeah. Okay, the first two months, I would say, the first two months, I was waiting him for him to sort of drop, I remember bringing him to the playground. And you my husband, I were really lucky because we actually knew a bunch of people who have had type one for a long time. And, you know, it hasn't went to high school, elementary school and middle school and high school with a woman who now is an endocrinologist. She's had type one forever. There's a, someone he works with who's had diabetes for a really long time, and type one. And I also have a friend who is type one, and they were super supportive in the beginning to which I think really helped us sort of get our feet on the ground.

Scott Benner 31:46
But look at that you had all that knowledge and those people and still you felt like this is never gonna change. Right? So So even with good examples around you in real life, it probably still wasn't enough to go Yeah, but this will be okay. For me. You probably thought I'll be the exception. These people are all doing great. We're gonna be terrible. Is that I felt Yeah, cuz Where do you get self confidence from about a disease that you just found out about five seconds ago?

Unknown Speaker 32:12
Right. All right.

Scott Benner 32:14
All right. Awesome. You're all wrapped up. But you're all revved up. Now. I like this. We're moving.

Unknown Speaker 32:18
Oh, good. God. Yeah.

Scott Benner 32:19
Yeah, I love this. Okay, so, okay, I want to stay in this for another minute. Because if you stop and think about who reaches out into the world for help, it's people who are more newly diagnosed, really struggling, or have gotten the information that they are at the point now where like, this can't be right, like, you know what I mean, like, maybe there's something else going on here. Those are the three people I hear from the most new and scared, not going well. Starting to figure it out, blah, blah, blah, they get out into the world. So the internet's an interesting thing. And I've been around it long enough around diabetes, to know that people come and they go, and that's hard to hear, right. But I will interact with someone this month, that I won't know, six months from now. Right? They'll just be gone with any luck, they'll, you know, they won't need the Facebook page anymore. Or they'll keep listening to the podcast, but they won't interact over social media. Like however it ends up happening. That's got to be the goal, right? I write I need to be comfortable enough thinking that the the information that I'm putting in the world is valuable enough that new people will find it through the old people. But I can't be a person who says, Let me keep putting out new information that keeps people scared and keeps them here. Yes, right. Right. I, my my, my goal is not to raise my children have them live with me for the rest of my life. I want them to go live their own lives. I'll be sad when they leave. But I don't I don't want to hold them back. And, and so that's the goal. And that's what happens for most people. There are very few people like me who stay behind to say, Hey, here's all the stuff I learned. I'm just gonna stay here and keep telling it to you. And let's be honest, why? Right, like I was writing a blog. So I kept doing it. I saw it helping people It felt good. I have kind of a caregivers mentality. So that fit me. Then I found the podcasting and not lying to you. I enjoy talking to you. I enjoy talking to the other people who come on here. And and so this is something I like, it's not something I'm doing because I have an ad to, you know, to get out. It's not that it's not because I have a bill to pay. It's because I enjoy it. I think it's valuable. There are some people who are just doing it to make their money. There. There are some people who are doing it for ego. There are plenty of people who probably think I'm one of those people. You can think that if you want no i don't think well, I wasn't talking to you. I was talking to the people. And there are a couple and that's fine, you know But But you have to realize that this should be, I find these people that who are starting one of these couple of fragile situations, show them what I know. Hopefully that's valuable to them, and it helps them and then they should go on and live their lives. But if we treat those people with kid gloves when they show up like they're fragile eggs, and they can't handle hearing anything, well, that's just going to keep them where they're at. And maybe some of them can't handle it. But that's not a good reason not to tell all the others who can handle it. And I don't know how to figure out who's who. So I'm not going to least common denominator to the things I'm putting into the world. That's how I've decided to handle it. And it sounds like that was helpful to you. Am I right?

Alison 35:49
Yeah, absolutely. Being able to? Well, first the decks calm was, was so super helpful. Once we got that, and we actually saw what was going on, um, being but feeling like we were starting to take charge of diabetes versus diabetes, running our lives, our lives.

That that's when things really started to settle,

Unknown Speaker 36:14
I think, yeah.

Scott Benner 36:15
And it's just a little confidence, right? That you need somebody to give you because where else you're gonna get it from. And, you know, some good information, like you said, the CGM really helped you. I have to say, like, you know, I feel like we can open like, pull this curtain back for people. So I just did a talk on Sunday. And, you know, sort of, there's nowhere to be, it's not one of the bigger talks, it was in a smaller it was at a hospital for a group. So maybe 50 people, right? In the bigger talks, I can hide somewhere else and just come out on the stage and be like, hey, Scott's here, and then talk about insulin and leave. But in those I'm in the room. And so people are coming in now. It's sort of like a wedding reception, like, and I'm just like, Hi, how are you? Like standing by the door shaking hands with people. And this Sunday, you came up to me, and you're like, I'm recording with you on Wednesday. And I was like, Oh, you're Allison. And you probably were even like, knew my name from the thing. It was just, I was a little surprised. It's on my calendar. Allison. Let's Let's play it so I got to see. This is the second time I've done your group's talk. You weren't at the first one. Were you? No, no. Okay. Because your kid wouldn't have even your child was diagnosed when he was diagnosed, like two months after I did that first talk there. So, so did this talk last January 2019. And they asked me if I would come back. It's very cool, because it's run by the CDs who were in the department. And its families that are you know, coming to the hospital, a lot of adults there were some of you guys who listen who showed up. And so I gave my little talk. I think we were there probably three hours if I'm

Unknown Speaker 37:59
probably right about that.

Scott Benner 38:00
Yep. And, and then the next year, I thought, like, when they invited me back, I was like, it's just gonna be the same people. But Alright, like, I'll come, even though missing the football game, whatever. I'll do it. And. Right, right. But I got there. And really only about 10 of the 50 people were holdovers from last year.

Unknown Speaker 38:20
That's so interesting. Yeah.

Scott Benner 38:21
And I was like, well, these are all new people. And so you are in a unique situation, to give me feedback, and I am going to ask for honest feedback now, because you can help me make my talks better. We offer that for a second. Sure. All right. So to start with, because I, I, you know, let's, let's ease me into it. Start with start with what you enjoyed. And even after listening to the podcast, what you found helpful if there was anything. Okay, I'm gonna edit out that pause. So that No, I'm just kidding. No,

Alison 39:01
no, because I'm trying to think of it as someone who has not walked. See I had already listened to your podcast before. So a lot of the things that you were talking about, I hadn't known already.

Scott Benner 39:12
Okay, well, then let's say I'm listening to you what's asked this question, then? Yeah. Does it work live? Would you need the podcast? Like the like, did was there enough time to get it out?

Alison 39:24
What you said was really amazing. It really struck me. Um, when you said something about, I'm not here to give you something like, this is totally spitballing here, but he said something like, I'm not here to give you the intricacies of this. I'm here to give you the overarching ideas that I use, that I know work that work for all of these other people. And I'm doing this so that you're interested enough and you see hope enough to go to the podcast. really listen, and listen to what I have to say. And you brought home the ideas well enough. And the idea is well enough. And the woman who was sitting next to Nope, she doesn't mind me talking about her, but she has had type one diabetes. And she told me she was 21 months old. Well, and I could see that she was really understanding what you're saying. And she had not really listened to your podcast. So she was sort of new to listening to you. And the things that she was that you were saying she was nodding, saying, Yeah, yeah, I get it. And they make sense. They're logical. And you use real world ideas and concepts to bring those things home.

Scott Benner 40:50
Okay, well, that's good. I, I'm happy to hear that. Because it's not enough time. It's obviously I mean, the podcast is now 300 episodes long, in my opinion, you should just listen to all of them if you really want to get the feeling for what you need to be doing. But I obviously don't have 300 hours. So yeah, my my thought is, these are the main parts. Here's the big idea. Here's an example of how it works. Can you you know, just get them to the point where they're like, yeah, that does make sense to me. And then they're gonna have to go home and find out more on their own. Like some people. It's amazing. Some people just from that talk, they leap right into it. That always fascinates, right? Like, I'm like, Wow, you really, like added your own information to what I said, like me, there must be some outside information that you added to this. But some people still struggle there are some people are just walk out. And they're just like, it doesn't make sense to me. And they might not never try it again. But I didn't. So I'm asking you like, do you see a better way? Having listened to the podcast and been at a talk? Is there something I could be doing that I'm not that you think might be valuable? It's also okay to say no, Scott, you're doing a perfect job. But I'm just I'm really interested if you think so?

Alison 42:07
No, because I think I don't think there's anything I think you've I think you've perfected it in a way. That is totally understandable for people. And here's why I say that. Because I think your biggest concept is you need the insulin and the food to be working at the same time. Right? Really? That's, that's she needs to know about diabetes, and they will tell you that the hospital,

Unknown Speaker 42:33
right? Right. They don't tell you that.

Scott Benner 42:37
Well, if they did, I wouldn't have a podcast. I mean, it really, really is the whole thing. Here's the truth, right? Here's how the podcast should go. Hello, and welcome to the first episode of the Juicebox Podcast. Make sure your insulins working while your food's working, you know, so when the insolence trying to pull you down in the foods trying to pull you up. They're kind of doing it at the same time. Okay, thanks so much for coming. You'll figure out the rest.

Unknown Speaker 43:00
Yeah, they told us. I mean, they told us

Alison 43:03
when we left the hospital, they said, you know, after Benny eats, see how much he eats and give him an insulin. Here's the the calculation you use. And I remember I walked home, we had this huge stack of paper, these charts for what he ate and the card counts, and how to do the math. And I don't you know, now I'm like you, I don't really, really know. I don't really card count. I can look at a plate and I say, Hey, this is what I think, based on what his blood sugar is right now. How much insulin he is gonna need. And here's what I think he's gonna need it.

Scott Benner 43:43
Yeah, I mean, you picked it up in 10 months, right? So it's, that's really cool. How do I do with the bazel? Like, did you understand? Was I clear about bazel? Because like talking about Oh, yeah,

Unknown Speaker 43:54
you know, one thing I thought that there we go. Sure if you said it, but what?

Unknown Speaker 43:59
I got my pen.

Alison 44:01
Uh, you were saying a lot that bazel is the most important thing. thing, which is what I've found 100% if we can tell, on a day when Benjamin's bazel is off that his bazel is off. His graph is crazy. Which doesn't happen very often. But with MDI, it's a little hard because sometimes, you know, you get sort of one shot at it. And sometimes, like, if we don't hold it in long enough, or we haven't pulled it out exactly the amount that he needs, his visa will be off for the day, okay. And which is annoying. But one thing that you said on the podcast that you didn't say that talk was that it's sort of the volume, and that's how we look at it. We sort of BS our bazel on what one how fast his blood sugar tends to move up and down. So when our So on the bad days, we get a lot of skyrocket up, crash skyrocket up crash happen often right and but then also we can tell overnight how has Basal is doing by sort of where it lands sort of the volume it lands at So, no sometimes we get a good 195 90 those are the those are when is diesel is that's when it's bazel is on point.

Scott Benner 45:29
So I'm not following the volume part though. Are you? You mean like an analogy about sound? Or do you mean about like liquid? Like volume like enough?

Alison 45:37
No, I mean, like sound like sound? So I turning

Scott Benner 45:40
it up and I didn't say that I felt like I did. Maybe you stopped listening. You might have been like swept off with I can't believe the guy from the podcast here. So exciting. Oh, my God. By the way, if you thought that seek mental health. You need to do psychiatry. But I felt like but I will make sure I wrote it down. I will double make sure that I say it like so that analogy works for you. The idea of turn it off until it and then bring it back down again. Okay. All right. Good. Thank you. Do I talk too fast? Well, you're from Jersey, you don't you don't know you? I know I can I

Unknown Speaker 46:16
just like whatever. I can hear anyone?

Scott Benner 46:18
Yeah. Yeah, I'm six people talking at the same time. You'd be like, yeah, I get you

Unknown Speaker 46:22
know, listening. Right. So, um,

Scott Benner 46:26
how fast that I look. That's important to know was I don't okay. I mean, trying my hardest, you know, they mean?

Unknown Speaker 46:33
Yeah, he looks fat.

Scott Benner 46:34
Yeah, that's what I thought I seriously a week before I go to any speaking thing. I literally cut out carbohydrates. no carbs. I

Unknown Speaker 46:44
drained all carbs. Fingers crossed.

Scott Benner 46:47
I just drained all the liquid out of my body right before I go. Like I get there in the morning. Like you want to eat them? Like, I feel like that would be a bad idea.

Unknown Speaker 46:55
Also a smaller

Unknown Speaker 46:56
rule. Mm hmm.

Alison 47:00
So so I'm sure you're like, No, I'm sure you're used to and you are, you're sort of on it. Like you were saying, You're used to talking on a stage you were sort of on our level. Yes, I could get you did seem a little bit nervous at first.

Scott Benner 47:11
Yeah, we got into Oh, because I'm like, I don't like the angle you're looking at me from just like, oh my god, geez, I know how this must look. It's also I'll tell you the one thing where I, when I start where I probably don't look completely like set settled yet is that I'm not so so I don't know if you've ever spoken to a bunch of people with the the intention of saying 10 things that are kind of complicated. But I would assume that most people have it down to some sort of a, I don't know, I just I just stand up there. And five seconds before I start talking, I think to myself, explain how insulin works to these people. And then I start talking. I don't think one of my talks has ever been the same. When I left there. I asked the CDs. Interesting. We had a conversation at the end that I had with the three CDs, and I said, um, how do I do? I didn't it wasn't real repetitive from last year, right? And one was like, it didn't seem anything like last year. And I was like, Oh, good. And then at the same time, I was like, maybe that's not good. Okay, I like how to lay. Because I said the same stuff. I just didn't say it the same way. Because I just don't want it to become repetitive. But it was funny.

Alison 48:28
I don't want it to sound scripted, too.

Scott Benner 48:31
Yeah, that to me, then it would get boring. And then if it's boring, then you're not listening. And it's boring.

Unknown Speaker 48:36
Yeah, cuz it's scripted. It would be boring. Oh,

Scott Benner 48:38
my God. Well, I'm talking about diabetes. It's not like, I'm not telling you the story of the time that me and a hooker and an elephant, you know, gotten in a plane and went to, you know, by the way, it wasn't a hooker, or an elephant, but me and somebody and somebody got into a plane into the thing. I get that. Okay, that's good. It's funny, because at the end, I said, I'm sorry, if I went really long, and they're like, no, this is this was fine. I said, The truth is, and I said it to you a little bit earlier. In a perfect world, I'd go and like, Go look, get your Basal, right. Learn your Pre-Bolus time. You know, try to stay flexible. bumping nudge, you're probably going to use more insulin than you think you're probably gonna use more baisley you think? Alright, I'm out of here. You know, to me, like, like, in the end, that really is. That is what I'm there to say. You know, and so I just do you find stories helpful. Like, did you find like the boy, the boy and the Cheerios? Like, did you find that story interesting for thinking about how food impacts insulin instead of

Unknown Speaker 49:39
Yeah, hundred percent.

Scott Benner 49:40
Okay, good. All right. Good. All right. I'm doing fine. What am I worried about?

Alison 49:44
Yeah, no, I think I think

going off experience stories, it makes it relatable. It's easier to listen to and you're still bringing home the key concepts. Yeah. So I really did think you did a great JOHN, thank you very good job.

Scott Benner 50:01
Was it weird that at no point did I show you a picture of art? And did you ever think maybe the kid doesn't have a daughter? He's making this all up?

Alison 50:07
No, I just think she probably doesn't want you to show her a picture. You don't?

Scott Benner 50:10
Yeah, she's not. She's not like, She's like, don't put my picture up there. Like, gotcha. Yeah, I didn't even ask her. She was just like, I don't like, even though like the podcasts, like the icons, the podcast and everything. They were always pictures of her when she was really little, like three years old. And one day, she was like, I do not want to look like a baby on the internet. And I was like, gotcha. So we just did away with them. And, you know, with this something else? All right, cool. All right. So where do you go from here? When your kids only four and a half? You've had diabetes for 10 months? Like, are you? This is a long haul scenario for you. Right? Like you're thinking about the next 20 years? Right? Maybe Maybe you can marry him off in his late 20s and get some girl to help him? You know, but like, this seems like a big How do you plan for the long haul? Do you think about it? Are you more of a one day at a time person? Or what are your? Like? What are your big ideas around around Benny's diabetes?

Alison 51:10
Yeah, that's a really interesting question.

Unknown Speaker 51:14
I, I'm,

Alison 51:17
I think I'm a little bit of both. I don't know how you have a long term plan for diabetes. I'm just hoping one day within the next 20 years, he'll have some sort of weird robot part that just handles his diabetes for him. I don't know if that's ever gonna happen. But we do the day to day, we really did. Do the day to day. Yeah.

Scott Benner 51:41
Is he so small right now you, it's probably just about like, let me get him to school with a pump. And like, I'll figure out how to get that done. And then we'll figure out the next piece. And I think that's, listen, I never know what anybody's gonna say when I asked them a question. But I think that if you're spending time with your kids, four and a half worrying about what's going to happen when they're going to college, you have, you know, you have found a way to worry, that probably isn't necessary. You don't I mean, and so that's cool. I think it's day to day. And I think that what you said about there are some days I don't think about diabetes, I think that's astonishing for 10 months, and that's excellent. Actually,

Alison 52:20
my main objective for having a, a young kid with diabetes is for him to never feel like his diabetes is bigger than he is.

Scott Benner 52:36
Yeah, I think my, my goal ends up being the thing, I end up wearing it when it works, it's the thing you worry about, too. So my goal is for Arden, not to feel like she has diabetes, and you know, as much as possible. And at the same time, there's times, you know, like you just pay attention to that place because and you know, so it's, it's weird, you put her in a scenario where she's just like, Yo, this works, I'm good. These are the things I do these things do this, everything's okay. It really is more about the timing the amount and the settings than it is about anything else. I always like when I hear people, I saw somebody the other day, who I think of is a real kind of icon in the space of people sharing diabetes information with other people. And this person is talking about being burned down. And I'm only watching from afar, whatever they're willing to share online, obviously, I'm not not in their house, you know. But I get that like just not wanting to do it, or just, you know, rather doing something else. You're being so busy that it's not it doesn't come first. All that stuff I completely understand. But as I see them, I think is it just like are you just are your settings wrong? Are you just like, like, why is it that much trouble to begin with?

Unknown Speaker 53:54
That's how I feel about it. Right?

Scott Benner 53:56
That's the thing I can't understand. I know why not understand. And and I you know, I don't reach out I don't know the person well enough to do something like that. But, but that's what I keep thinking cuz there's days I don't want to deal with. I've seen there's days for arms, like you have to be kidding me. We're changing this pump today. You don't mean like, and again, it's been three days, you know, and and it's just a look on our face. Like I've got homework, and I don't want to you know, like all that stuff. But it's a couple of minutes. It's the pump, it's filled, the pump goes on, you push the button, it's over. You keep going. Like it literally is five minutes. And yeah, like start to finish. And when your kids are younger, it takes longer, but trust me as they get older. I could. Let's just say this. I think if you could give me a tray that things stuck to. I could ride a bicycle and fill in on the pod and stick it on myself. Right? Like it's just it's super simple to do. Same thing with the CGM like boom, boom, boom. It's like you know,

Alison 54:56
I try to look at it sorry to pay off but I look at it as just annoying. things you have to do during the day. There are all a lot of annoying things that I have to do that we all have to do. Mm hmm.

Scott Benner 55:08
Well, you're married. So you have a different perspective.

Alison 55:11
Yeah, that is true. But I, you know, I was like you, I mean, when you were, we were at the top here at hanging out, like missing, I was the same way. I was the same way with school. Okay. Um, and, and like, that was a, it was annoying to me to go to school, not saying diabetes, the same thing. But I'm just saying life is a series of like, really annoying things. And so, you know, Benny's Dexcom is out tomorrow, and we're gonna have to change it. It's not his favorite. But bam, we change it, this is the situation just try and move on. There's nothing we can do about it. So it's funny,

Scott Benner 55:50
I saw I grew up really broke, like super broke. And so there are plenty of things that I just think of as tasks, right? Like they need to get done, and they get done and you do them because there's no other option can't buy your way out of them, you can't get somebody else to do them for you. You know, that stuff, like I've just always grown up that way, like just put your head down and do it. But at the same time, I think that if you want to know one of the reasons, I feel like I'm successful with helping my daughter with diabetes, it's because I see my to do list as very fluid. And so when I make a list of things in my mind, or on a piece of paper on my phone that I need to get done both today, this week, this month, this year, those things just they can, they are constantly reordering themselves. You know what I mean? Like, I don't write the list down. And now go, I have to now I did the first thing. And now the fifth thing is yelling at me. But I have to do two, three and four before I get to five, like my brain does not work. And I'm like, Alright, five is random either five now goes to one. And and so now I do five. And I think you'll find as you go along that there are some things in life that you would be nice to get done. But if they don't get done, it's not really the end of the world. And you know, pay your bills on time. You know that stuff. Make sure there's food in the house that stuff. But you know, you're really meant to, I don't know. So a hole in a pair of pants you have and it doesn't get done. doesn't get done. You know, like, like, you can't make

Unknown Speaker 57:26
pants.

Scott Benner 57:27
You don't sew holes and pants you so holes closed. Oh, so just kidding. No, no, I'm just joking. You didn't have to apologize. Um, well, I stitch up some clothing if I like it, and often I don't want it to keep wrapping Sure. I've been a stay at home dad for 20 years. I clean toilets, take out the garbage, clean the floors, do the dishes. I the other day. I'm mumbling to myself. And Arne goes, What are you saying? And I said, I'm saying? I said I'm saying wash the pan, make the pan dirty. Wash the pan, make the pan dirty. Wash the pan make the pan?

Unknown Speaker 58:01
She's like you're about to commit?

Scott Benner 58:03
Yeah. She's like Yari? No, Mike, I've watched this pot four times the day someone needs to stop eating for a while, like, what do you just give up for a minute. But my son's home from school, they all get up at different times get on your break? Yeah, kind of stuff like that. I don't know, like, you know, but I'm not washing the pot thinking about Oh, the thing that's 10th on my list, I've pushed down three times, and I don't get mental about that stuff. And I so I do that with diabetes, too. There's what's important. It's like nice to haves and nice to haves. So then I take care of the needs as the needs turn from nice to need. That's all. Yeah, and then sometimes nothing needs to be done. And that's when you relax and Coast. Right? I mean, is that not life? Maybe I'm wrong.

Unknown Speaker 58:51
I don't know. good moments, bad moments, annoying moments.

Scott Benner 58:56
Right? And here's one for you. You want to get a little deeper?

Unknown Speaker 59:00
Sure.

Scott Benner 59:02
Every day is not gonna be terrific.

Unknown Speaker 59:04
No, you don't mean like

Scott Benner 59:06
if you wake up every day go and this day better be terrific. I better be happy and smiling. I'm not saying like I'm walking around like dragging myself around thinking like, Oh, I just need to find a window to talk myself out of but I'm just saying like, some days aren't super exciting. You said something earlier that I thought was very mature and like indicative of a parent and a married person. You said something like the day started piling up. And I thought that is interesting. If you've been alive for a while you realize there are a lot of days. And you know what I mean? And that they're not all gonna get to be you know, they're not all the day you went to Rockefeller Center, went skating saw the you know, saw the saw the girls kick for the Christmas show and then get your picture taken in front of the cathedral and then bumped into Jeremy Irons like that, you know, that's by the way that actually happened with me one day, which is where

Unknown Speaker 59:59
that whole day happened to you?

Scott Benner 1:00:00
Yeah, Jeremy Irons was right in New York. And he was shopping at Christmas. And I was like scar. Right? Right. Like we got your scar. So we just everybody looked at him, we're like, yo, Jeremy Irons. And he was like, hello. And then we just lock the layer like was back before cell phone cameras. So you were just like, the guy from The Lion King and other films. And right now people are like Jeremy Irons is from this not the Lion King, but and

Alison 1:00:31
he definitely has the better version of be prepared. 100%

Scott Benner 1:00:35
of course, first of all, and secondly, number one super skinny guy.

Unknown Speaker 1:00:39
Really, I found myself

Unknown Speaker 1:00:40
thinking, could I just break Jeremy Irons in half if I needed to? Probably I

Unknown Speaker 1:00:46
would definitely be a story man be a day.

Scott Benner 1:00:49
Went to the Christmas show. Ice skating saw the tree broke Jeremy Irons and F for no reason. Just because he looked brutal. No, but but my point is, is that every day can't be that day. Yeah, you know what I mean? Like and so with diabetes every day can't be the day you don't think about diabetes. It doesn't make the day you have to think about it. Some horrible, depressing slides just that's such a huge thing. Right? Yeah, it's such a huge thing. be hopeful. That's sort of how it seems to me, and the rest of it kind of comes together. Okay, so you didn't say but when do you have a pump in mind for Benny when you try to get him on a pump?

Alison 1:01:31
Yeah, we're definitely gonna put them on the pod for definitely

Scott Benner 1:01:35
no ads on this show. Just know, just go to the links, you'll be all set. No, I'm, I. I'm a fan, obviously. And they're their sponsors. Because we have such a good time using the Omnipod. For so long. It just it's consistent. It's a it's a workhorse in our life. Right? Like it doesn't, it doesn't let you down and it does what it's supposed to do. It does the way you expect it to do it. It does without tubing boom. I find it, you know, for little kids, or adults doesn't matter to me. Like I find like when you say something about something and you're like, Oh, it's great for kids because of this, then people like suddenly think well, it's not good for other people then but that's not the case. Like that thing. I just love it. I think it's terrific. Do you think Has he seen it yet? Have you

Alison 1:02:21
he has so he is not a big fan of putting on the Dexcom Mm hmm. And so it's been partially why we have sort of held off on the pump. He doesn't really want to be wearing something else. Mm hmm. So that's where we're at right now. about it. But you know, it's it's all like getting into the routine of things.

Scott Benner 1:02:46
Yeah. And you're doing well with MDI. It's not like you be not pressured to move. You can do it. When you're comfortable doing it. How, um, how would you mind sharing? what is success look like? What are your goals, you know, day to day and a once a day, once a day.

Alison 1:03:03
So his first when he was diagnosed, he was we caught it really early. So he was maybe seven something when he was diagnosed. Hmm. And we, with the honeymooning and stuff like that we were able to bring it down to force for seven times. And then his last endo appointment, which was last month he was five, six.

Scott Benner 1:03:27
I think that's very respectable.

Alison 1:03:29
Yeah, yeah. So we do the best we can at school. It's a look now that he's been in school since September. That time is harder because he's not with me. Although he has a great team at school, his his, the nurses, great. His teachers are great. They follow the dexcom they're really vigilant, although they don't and they don't shelter him, which is sort of where, what I really asked of them, sort of like just like every other Katie spine, but also make sure you're looking at is Dexcom.

Scott Benner 1:04:01
Yeah, you know, I realized that you say that to people. They don't really, some of them don't really hear it like they do. They pretend they are but I'm just gonna. It's my hope. But you know, artists in high school. She's a sophomore, she doesn't look like you know, she looks like every other kid. And they're to drop off points in the front of Arden's High School one that's right at the door like a loop that takes you right to the front door. And there's a loop that kind of takes you to the top side of the parking lot where you would let your kid out and they would probably go about on a 30 cent 32nd walk to get to the front door. And they re kind of like moved around how the traffic went. And I one of the principals said to me one day, hey, I you know, I just moved the traffic, you should try the top drop off, like inferring the drop off that takes the 32nd walk and then says totally seriously and with that concerning his voice and his face, she can walk that right. And I was like, I almost for a second was like, What the heck? Are you even asking me, you know? And then I realized what he was saying. He was like, I know she has diabetes, can she make that walk? And I thought you don't understand that at all. Do you like you have no grasp of this whatsoever? And I was like, and it's not important that he does. I just went, Yeah, no problem. Anyone? Okay, great. Give it a try. Then I was like, we certainly will. But I was I drove away. I was like, Huh, there's something I never would have known had they not fixed the traffic pattern in front of the school. And he wanted to say that to me, um, but he he sees her is different, even if he doesn't say it out loud. Right. And I think that's probably fair, you know, I mean, like, he didn't know anything about diabetes. And what he really meant was like, I don't want to put her in a situation that she's not okay with. But he wasn't being like, you know, your busted up kid can walk right? Like, that's, he was just like, you know, oh, I made this suggestion to you. And now I realize, maybe, maybe I shouldn't have and he was just trying to figure it out. There was no malice, you know what I mean? It was perfectly

Unknown Speaker 1:06:11
right. It was innocent, completely, completely innocent.

Scott Benner 1:06:15
But I just think sometimes, people really expect other people to completely understand everything. And I'm like, I don't even completely understand this stuff in my life. And you know, I've used this analogy in the past. If you started telling me you got on here and started telling me about your disease that wasn't diabetes. I have no idea what I was talking. I just feeling well, it's amazing. I might, I might speak to you about it more carefully, because I know you know how people have spoken to us. Oh, hold on. Arden's back. Excuse me. One second. Sure. didn't eat the chips or the cookies. Oh, look at me. But she that means she ate the bagel.

Unknown Speaker 1:06:55
Then I want to Bolus more.

Scott Benner 1:06:59
How many more? How many more? How many more? 918? Three more units?

Okay, um, what you don't know is while we've been talking for the last five or 10 minutes I've been typing. Hello. What did you eat? Hello. What have you eating?

Alison 1:07:23
Did you do the can talk right now?

Scott Benner 1:07:25
I said I she answered me finally when I said killing that. me that. Then I got What? Oh, I didn't eat the chips. Cookies. So I just sent back Bolus, you know, three more units. Yeah, hello. Hello. It wasn't the No. Oh, I told you guys that at the thing. I don't know if I ever say that here. But when if I call art and it's not when I text if I give up and call to get the ring to kind of get her attention because she's not ignoring me on purpose. She's just not hearing it. She's just busy. The minutes that her phone rings she you know, for those of you have an iPhone, she swipes up on the thing and hits like, I'm sorry, I can't talk right now. So it sends me It stops the phone from ringing and then sends me a text it says I'm sorry, I can't talk right. That's my that's supposed to be my clue that All right, I'm paying attention now. What do you want? But this was texting. I was been texting her. Hello, hello. Um, sometimes I text her name one letter at a time. That seems to piss her off. In case you're wondering.

Unknown Speaker 1:08:27
Hey, I could see that. I could see that. Or

Scott Benner 1:08:32
the she's like what? But it opens me up or if I don't see her text. Oh my gosh. Then I start getting s see. Oh, and she doesn't stop. She hammers them out really quickly. So even once you're answering you're like, stop. I'm here and they just keep coming. And you're like,

Unknown Speaker 1:08:48
because How old is she? She's 15. Yeah, yeah. She can talk with her eyes closed.

Scott Benner 1:08:54
Yeah. Oh my god. Are you kidding me? sometimes she's talking and texting. And I'm like, That's fascinating. You know, I'm getting there, by the way. Like, can you do it a little bit? Can you text without looking? Yeah, I can. I can start imagining like, oh, the Jays over here. I'll just move in that direction. Alright, Alison, you had topics I really liked, which meant I spoke more. So I feel bad about that. But did we? Did we not do any of the things that you were hoping to talk about?

Alison 1:09:25
No, I really think we covered

I think we covered everything really touched what I wanted to what I wanted to bring home to people. Okay, so you let me down on one point.

Scott Benner 1:09:36
At no point in the podcast did you use the word jet? So that I could make the title of this episode Benny and the Jets? Yeah, so

Unknown Speaker 1:09:47
does Benny like playing again?

Unknown Speaker 1:09:51
How's Benny with planes? Does he like them at all?

Scott Benner 1:09:55
Just say Benny likes just

Unknown Speaker 1:09:58
loves jet. So I thought

Scott Benner 1:09:59
so. Thank you, Jesus, Allison get on board.

Unknown Speaker 1:10:05
Just hold my hand they'll get there eventually say the kid

Scott Benner 1:10:08
likes planes, for God's sakes make this easier on me. Now. I'm totally calling it many of the Jets.

Alison 1:10:15
Oh, 100% I didn't even think about that. But do you

Scott Benner 1:10:18
know, in my mind, what I think is people say it's called Benny in the jets and the entire time they're listening. They're like, when is this gonna be about planes? Okay,

Unknown Speaker 1:10:28
where is the song?

Scott Benner 1:10:29
Yeah, right. Are they gonna sing is just about elton john, what's going on? So that you all know, I? Alright, ready? We're gonna be a little honest. I named the podcast episodes. First of all, they're vague for for a reason. Like, because if I said to you right now, Allison, what did we talk about today? Is there a way for you to put that into a sentence?

Unknown Speaker 1:10:53
Absolutely not.

Scott Benner 1:10:53
Not right. And I think we hit three or four, maybe five important ideas about diabetes. If I start listing them, then it feels like medicine, right? Today's show is about, you know, the Internet, and share like Pope, if you told me that I'd be like, I'd be like, Oh my God, why don't I just bang my head into this door instead of listen to that, right? If I say, Allison's the mom of a four year old with type one diabetes, and everybody who's an adult ago, and that's not for me, but that wouldn't be true either. Right? And so I just picked something out from the episode. That tickled me. And I make that the title. The title almost never has anything to do with the episode, but it's just the hook. The devious part of me thinks, you know, if the thing in the title comes in the last 45 minutes, I could probably make sure you listen to the whole episode. For those people who are paying attention to that I'm I'm like a mastermind.

Alison 1:11:50
I feel like you just let us in on a big secret. Do you

Scott Benner 1:11:52
feel like you're gonna look back now some of the titles and be like, Oh, my God, that's true. This episode wasn't about that at all. It's just what they said in the last 10 minutes. And then I got to that I was like, I might as well keep listening now. Because? Because I'm not interesting enough to hold you for an hour. I don't that's not true. I don't think that at all. I think I'm incredibly interesting. How else would I make a pie? Who else would have listened? It's like being like president, right?

Unknown Speaker 1:12:19
If you're looking Oh,

Scott Benner 1:12:21
wow. How is it like being Oprah? I'm interested. Good.

Alison 1:12:25
Because Oprah is Oprah because Oprah believes in herself. And overthink, she's great. And look at her.

Scott Benner 1:12:33
All right. Well, if you have a second This podcast is gonna go longer. You good? Yeah. All right. So we're having this conversation last night. With someone in Arizona, I'm in talks to do a to go out to Arizona in May of 2020. I think it's going to happen. So if you're in the Arizona area, I think it's like may 2 or may 3 or something like that. But there'll be more details when it gets hammered down. So when someone reaches out to me, and they want me to speak, you know, the first thing they're really interested in is listening to me speak to some people hear the podcast, they know what they're getting. They're just like, we want you to come out like, just come. But some people are like, Hey, we had a colleague tell us about you, or there have been so many people who have you know, from our group, they keep asking for you to come and let me be honest with you. I don't know who you are. So you know, we get on the phone. And it's my job to sell them the idea of me, I guess, right? Sure. And so I kind of have to say, look, here's where I came from, here's my ideas. Here's how I'm going to talk to the people when I get there. This is my goal for them. You know, I kind of lay it out for them. But at the same time you're being engaging while you're talking because you want them to think, oh, I've had a good time on this phone call. I bet you he'll do the same thing when he gets here. So there's a whole lot of that going on. And I had that call last night for Arizona while I was coming home from somewhere. So I was driving. And we got along so well on the call. I thought that at the end, I said I'm so sorry. Like I sold you pretty hard. I really want to come out there. And she said Why do you want to come to Arizona so badly? I said, I've been there before I'm getting a lot of people asking me to come back. But the jdrf doesn't, they don't repeat speakers one year after the next like so I'm, I'm not coming next this year for that group. And I still would like to be in the area. So I was like I was I was trying really hard. I wanna I want to come out. And I said it's a weird thing to talk to you about this because I have to project to you confidence in what I'm saying. Confidence in my ability to come out there and reach your audience without sounding like I love myself. And I you know, and I don't but at the same time I do have a lot of confidence in my ability to come do the things I just told you. I was gonna do And so it's a weird line to walk you don't know when you're walking if you're on the wrong side of it or not. And sometimes you can be on the right side of it for some people and on the wrong side of it for other people, which everyone's perception. Right, right. I sure if you don't hear sarcasm, well, we didn't grow up around it. I could, I could totally see listening to this podcast and thinking that guy Scott is a jerk, like I would, but you don't feel like I'm a jerk. But you grew up around here where people are generally sarcastic with each other. Yeah, for no real reason.

Alison 1:15:36
or actual jerks. And I'm still not bothered, right?

Scott Benner 1:15:39
Yeah. You guys and ask but nice guy. Right, right, right. And so. So you're talking to people in other parts of the country, and you're sort of like, I don't know how I'm coming off right now. I can only be myself and it'll, it'll be what it is. But it's a really, now here's the other side of it. I've spoken at a lot of things. And I'm not always speaking 24 seven, while I'm there, you know, I do a lot more than most people like I don't just come in and do an hour, I do sometimes three or four separate hour long talks. And in some situations, I'll do one block, like I did with you guys on Sunday have like three hours. But but so I have some time to move around and listen to other people. And some people are so engaging and delightful. And I'm like, Oh, they do it so much different than me. But this is so much fun. And you know, interesting. There are some people, like you walk into the room, and you start listening and you think, how do I get out of here? Like, like, I gotta get out of here. You know, like, painful? Yeah. And and, you know, don't have any carriage of the, you know, the, you know, like, I don't even know there are some of maybe they get frozen in headlights or something like that. I don't know. But there's some of them. I think to myself, why would they have offered themselves up for this even like, this would be like if I showed up? You know? You know, at the at the Sixers game tomorrow night, I was like, I could play center for you guys tonight. They were like, really? We need a center like, absolutely. And then I got out there and realize that was you know, five, nine and 50 years old.

Alison 1:17:05
Yeah, like the bad people that try out for American Idol.

Scott Benner 1:17:08
Right? Sort of like that. Like, you're just like, why are you here? Like, why did you think this was the thing you do? It's not, you know, or, but then there's sometimes they're done. And they're so pleased. I was like, oh, wow, this is interesting. So I talked as I talked to the people who put these things on, and sometimes I asked like, How frequently do you have someone in and you're just like, Whoa, we missed on this one. And they're like, every year, every year, there's someone where you're like, how did who, who told us this person was good for this, you know? And it's sad. Like, it hurts because I'm going to tell you right now, if I do have ego around something, I don't want to show up at something and speak to an empty room. Like that would crush me. I'd be like, oh god, there's no one in here. I'm gonna fake up broken leg and get back on the plane. But I saw a person one time speak to three people in a room that held 150 people. And I felt terrible for them. Like I do.

Unknown Speaker 1:18:05
I don't think I would be able to do that.

Scott Benner 1:18:07
What would you do? Like right? Like hi head? Oh, no, everyone. Why don't we? Why don't we introduce ourselves? Like, it's like, I wouldn't know where to go from there. I just I'm telling you, if that ever happens to me, you'll hear the next thing you'll hear from people Scott got sick anyhow.

Alison 1:18:24
I feel like confidence genuine confidence comes from from three places. One, your ability to fake it. Right? Like some sort of ability to like, really be able to put on a show, fake it smile. Act like you know what you're talking about? And I guess it's I guess maybe too, and then really listening to other people. Right? So someone's like, it's like you asked me said, How did I do in my talk? Right? Because you are genuinely curious. Because you're gonna take what I say. And you're gonna use it next time, right?

Unknown Speaker 1:19:00
I said, Scott, you sucked.

Scott Benner 1:19:02
You'd be like, Oh, I would say Why? I would say tell me why. Yeah. Well, I think that, you know, being complete, not that I wasn't being serious before, but I was being a little flippant at one point, but being completely serious. I am confident with the information that I'm giving. Right, that I think if you listen to the podcast, you'll know I won't answer questions. I don't think I that I don't have an answer to I don't I don't pretend to know something. I don't know. But the things I do know, I'm confident that I know. And it's the confidence comes from writing about it for eight years, talking about it for five years, having all these conversations with all you guys and the people that I have these conversations privately with, like, that's practice. You don't I mean, it's it's it's that that I'm confident about an experience.

Yes. I don't. I never feel good about how I feel like I look like I'm like I I'm not gonna lie to you. I wish I was 62 and, you know, you know, more handsome and dashing like, but I'm over That, like, I don't care that I don't look like that. That doesn't bother me anymore. But it did in the beginning was hard. In the beginning, I was like, I stood up there and I thought, I don't look the way I think a person doing this should look. But that turns out not to be a problem. And I was able to work through that. But you're you're right. It's not even the faking it part. It's the faking it to yourself. Like, you have to believe you belong there saying it. Yes, that's really the like, you're not faking the information, you're faking that it should be you because no one has that confidence that it should be them. You know, like, what, what do they call that imposter syndrome? We all feel like we're imposters in our lives. Right? Like,

Unknown Speaker 1:20:39
like, they're why you put it in a really good way. Did you really manage to say what I was trying to

Scott Benner 1:20:43
say? And so and that's the other thing that I know, I do. Like, I know that I say complicated things, simply. You know. And so I but I've seen that throughout my life, is I didn't just decide yesterday that it would work and take advantage of it and go like all speak your thing because you asked me to like, I didn't speak at something until I was confident that I could do it until I had practiced it. Other places. I didn't just wander in somewhere and be like, yeah, let me tell you all about this topic. And by the way, some of the topics aren't topics here, you if you know what if you're, if you have a podcast of your own, you're still listening. You deserve to know this. You know, the problem with your podcast is that you try to make one episode about a topic. No topic eats up an hour. That's pompous. Okay? You don't know enough about a thing to fill an hour about it. You don't I mean, like, you're not you're not a lecturing like. And by the way, how bad is that in college when they get up and lecture for two hours? Like? Yeah, who? Exactly? So so one of the problems with podcasts is, some of them try to pick a topic and talk about it the entire time. And there's no like, it's just there's nothing's that interesting. It also doesn't

Alison 1:21:56
allow for the fluidness of conversation,

Scott Benner 1:21:58
right? Where the idea that you might say something I didn't expect you to say. You don't mean like, and that's why I don't like to talk to people beforehand, because I asked you a question earlier. And I was like, Oh, I like the way this answer when, but you could have answered the opposite. And I would and that would have started a different conversation. And you know, then I don't know, it. Just it makes sense to me. But I don't know, like some of them. You're just like, oh my god, like, all right. It's 45 minutes later, I swear to god off, I'll recycle. Leave me alone. I'm sorry. I'll do it. Please, please stop talking about though you're trying to beat me into submission here. Like is that what's going on? The even when I had the idea to bring Jenny and and do pro tips. I was like today we're going to talk about one idea. There's still conversational around the one idea there. It's not part one, part two, part three, this step 1234. I just don't I mean, maybe there are people who can talk about talk like that. But it's not me, you know. So.

Alison 1:22:59
Right. But also those episodes that you have with Jenny, the shorter one,

Unknown Speaker 1:23:03
huh? They're not an hour. Yeah, they're usually not that long. Right?

Unknown Speaker 1:23:08
Yeah. To talk about the thing. You're done talking about the thing. And we're done. Yeah. And then you're done. It'll keep beating the

Scott Benner 1:23:15
don't keep beating that, you know, I'm just like, Ah, this horse is dead. Let's move on. You know, this is how you Pre-Bolus Let's get out of here. Now, and I appreciate that. I really do I have to admit, like, I'm, this is the sixth season of the of the show. And sixth year, I complained in an episode recently about podcasts or like have eight episodes and like that was season one. I'm like, Nah, what? Alright, you know, but, but I've been doing this like a really long time. I feel as comfortable now as I ever have. I feel like the the shows are getting deeper. Yeah, but not in a bad or boring way. And I really do enjoy doing it. Like you'll know when I stopped enjoying it, because I'll stop doing it. But I just I have a really love this. And again, I haven't said this in a while. But the super secret of the podcast, it's not that secret is that these conversations really helped me help my daughter. And then that in turn helps me talk about it on the podcast. So it's sort of a very uncommon thing. That's everybody's giving to it. And everybody's getting from it. Which you don't you don't see something. Yeah,

Unknown Speaker 1:24:23
absolutely. It's very cool. It's like the ripple. The ripple.

Scott Benner 1:24:28
Yeah, that's hundred percent. It's wonderful. You people like you Come on, and you open up about your life. And, you know, everybody grows along with the idea. So I love it. I'm very happy to this. I appreciate I'm sorry, I'm holding up now. I appreciate you coming on. And

Alison 1:24:42
no, of course I was so happy to come on.

Scott Benner 1:24:45
I really appreciate that. I wrote it was very nice to meet you. I know while I was talking. On Sunday, I said to Alison I was like this is disconcerting because you look just like your avatar picture. And, and it really did and then you were like Oh good. Whatever, you know, what is that? What is that? What? on Facebook? See? What do make me look old for they used to be called avatars. Okay? Like your little picture of yourself on wherever you are.

Alison 1:25:11
It might be called that I just I don't think I've ever heard it.

Scott Benner 1:25:15
You trying to make me feel old? That's fine. And now you've just insulted all the other old people who are listening. Just Say No, but you look just like, yeah, you look just like literally, like there was part of me that at first like so here's how it went through my head. I was like, Did she like dress like her photo online, so I would know who she was like, that was my first thing then I just realized it's your glasses and dark hair. Yeah. Do you see what I'm saying? That like that. I was just like, it's just very recognizable. And I just looked at you on Facebook to have this conversation. So now this this episode's gonna go three more minutes. Are you from Red Bank?

Alison 1:25:52
Yeah, I was born in Riverview. I love

Scott Benner 1:25:54
Red Bank. Because Kevin Smith so nice there. Yeah, that's why that's 100% Well, that's how I found that town. Like, like, 2020 years ago, I was like, yo, you guys know Kevin Smith opened a comic book store and Red Bank. Like, can we like, you know, we're like, We're going and here's the thing, people who don't live in New Jersey don't realize you can drive across New Jersey in like, 45 minutes.

Unknown Speaker 1:26:19
Yeah, no, it's right. Yes. It's no, it's not bad.

Scott Benner 1:26:23
It's not that there's a part of Central New Jersey, where you basically can go from the entire western part of New Jersey to the to the shore in literally like an hour. And so the first time we got in the car, like, Oh, it's gonna be a trek, you know? And then an hour later, we're there like, Oh, my God. And then and then there was Kevin Smith's comic book store.

Alison 1:26:43
And I'm so happy you said central jersey.

Yeah. Always something there's like a huge thing. Where are some people say central jersey does not exist. But I always say that I grew up in central jersey, right

Scott Benner 1:26:55
people in so people in the Trenton Princeton area are considered South Jersey to anybody north of them. As if, right as if the south, the southern part of New Jersey doesn't exist. But there's a Southern part down below Philadelphia. That's that South Jersey. And so this essentially, this is not a difficult thing. You look at it, and the middle is the central part. Right? But everybody gets that wrong. Everybody's always like you live in South Jersey. I'm like, No, I live in central jersey.

Unknown Speaker 1:27:29
Like jersey,

Unknown Speaker 1:27:30
everyone has an opinion about it. So jersey,

Scott Benner 1:27:34
to disagree about something so simple that they really can't be disagreed

Unknown Speaker 1:27:37
about name.

Scott Benner 1:27:39
Yeah. So what is it that the real southern part of New Jersey people think of is Pennsylvania they think of it more is Philadelphia, right? Do you think I

Alison 1:27:46
just think of wah wah

Scott Benner 1:27:51
wah wah. Now here are everywhere. There's one in Red Bank.

Alison 1:27:54
There is one of my bank. I've been to 10 Really? 10 minutes from my house growing up. Never knew it.

Scott Benner 1:28:02
I went to Kevin Smith's film festivals at that in that little theater right there in Red Bank. Count Basie. Yeah, it's at the Count Basie theatre. I've been to the Count Basie theatre a half a dozen times in my life always to see Kevin Smith's movies. And you're saying you grew up like 10 minutes from there? Yep. So now here we are. All right. Now no one Allison does not live in.

Unknown Speaker 1:28:25
I don't live there. Right bank anymore. Don't go looking for you. We're gonna try and find me. Yeah, yeah, that

Scott Benner 1:28:30
one of you out there right now. It's like dark hair and glasses. Red Bank, you say? Just pull yourself together. Turn yourself into the cops. If you're thinking that all right.

Unknown Speaker 1:28:39
Don't worry. I'm pretty sure they'll find about

Unknown Speaker 1:28:42
I don't know.

Scott Benner 1:28:43
More than one Allison.

Alison 1:28:45
Allison with dark hair and glasses in Red Bank.

Scott Benner 1:28:48
All right. Leave Alison's alone for God's sake. All right. Awesome. I'm gonna say goodbye. Hey, huge thanks to Alison for coming on and talking about her life and Benny's type one diabetes and bringing up so many great topics. Thank you all so touched by type one. And the Contour Next One blood glucose meter for sponsoring this episode of the Juicebox Podcast. Go to Contour Next one.com forward slash juice box and touched by type one.org to support today's sponsors. There are links to all of the sponsors right there in the show notes of your podcast player and at Juicebox podcast.com.

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#1747 Tandem Kids: Adelaine

#1745 Icky Sticky

#1744 Life Coach: Empty Nest

#1743 Penny Drop - Part 2

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Scott Benner 8/13/20 Scott Benner 8/13/20

#367 Utah Jen

Let's not quibble about juice

Jen has two children. One has type 1 diabetes and the other lives with Dent disease.

Check out the Diabetes Pro Tip episodes and Juicebox Docs

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Scott Benner 0:03
Hello, everyone, welcome to Episode 367 of the Juicebox Podcast. Today's show is with Jen, Jen and I have known each other for a while. She's the mother of a child with type one diabetes, and the mother of a child with dengue disease. She's also someone whose private conversation with me turned into something that I talked about on stage when I'm speaking. I can't tell you the twists and turns that this episode takes. So every time you think, Oh, this is what this one's about, it'll change. Please remember, as you're listening that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. Don't forget, if you'd like to share the diabetes pro tip episodes with a friend, you can actually just send them to diabetes pro tip.com. Nice and easy. Of course, you can always get them to subscribe to the podcast, but diabetes protip.com will show them those specific episodes. And if you have a great doctor that you'd like to share with someone else, check out juice box docs.com. This episode of the podcast is sponsored by Dexcom, makers of the GS six continuous glucose monitor, find out more about the dexcom G six@dexcom.com. Ford slash juice box. And if you'd like to get a free, no obligation demo of the Omni pod tubeless insulin pump sent directly to your home. All you have to do is go to my omnipod.com Ford slash juice box. It'll be there as quick as the mail can get to you.

Utah Jen 1:55
My name is Jen. I live in Utah. And I have a little boy who is eight. He has type one. And that's why I'm here.

Scott Benner 2:06
Ah, that's not why you're here. Here, Jen, because you are one of the few people who I've communicated with in the past who have a title. All right. You are Utah Jen. That's a mutagen. There's also a woman in Pittsburgh, her name is Pittsburgh. This is how I keep track of people. She doesn't even get her full name. She just gets Pittsburgh,

Utah Jen 2:27
especially Jen. Because there's so many of them.

Scott Benner 2:30
Well, that ended up being one of the problems is that at some point I was corresponding with enough Jennifer's that I was just like, I don't know who you are. And I can't like I'm scrolling back going like who is this? But your story's specifically exciting for me to tell you and you don't even probably know why. But I'm gonna start by asking how things are now for your son.

Utah Jen 2:55
So good. Scott,

Scott Benner 2:57
tell me about how it goes now, like what's a regular day like?

Utah Jen 3:01
So regular day is, you know, typical when he wants the food, we, I don't sit there and count all the carbs like I used to and like be freaking out about it. I kind of look at the meal and I say okay, Hmm, this looks about you know, 3040, whatever, 4050 carbs. And I say, Okay, let's do it. And so can we kind of do it together because I'm trying to help him to get to that point. And we, we've learned the extending, we've learned the, the temp basals. We've learned so much. And he's now able to pretty much hopefully if things go well go throughout his whole day, and not really think of diabetes. That's very, which is a huge step from where we first came from. Right. And we're gonna get to that.

Scott Benner 3:53
Yeah. What What is a one c? Can you say?

Utah Jen 3:57
I'm 6.2 right now.

Scott Benner 3:59
That's lovely. Good for you. Okay, so am i right to say that we found each other? You found me through Facebook?

Utah Jen 4:08
Yes, I did. How did that happen? Um, I was just, well, wait a minute. No. So I was listening to a different

diabetes podcast before.

Scott Benner 4:18
Do you still listen to that diabetes podcast? No. Oh, keep going?

Unknown Speaker 4:24
I don't,

Utah Jen 4:25
I can't. It just doesn't. It doesn't click with me. And then I found you. And I'm like, Who is this weirdo? When I first started listening to you? I thought you were I thought you were super quirky. And I and I'm like, I loved it. Right? And then I just got hooked. And then I'm like, you know what? I'm the type of person where I don't I kind of think we're all together in this, you know? And so I'm like, I'm just going to email him, or I'm going to find them on Facebook is what it because he kept saying, go to my Facebook page on the web on the Juicebox Podcast and so I went to the Facebook page, and I think I texted you on Facebook or instant message you and said, Hey, this is this is our deal. I don't know what to do with this. And we were just doing we were still MDI at that point. And then you kind of reached out. I mean, you were so quick at reaching out to, well, like, Oh, my God,

Scott Benner 5:21
that's lovely. It's because you were in such a situation that made me feel like, Oh, can I really ignore this and let this kid's blood sugar before 100? And I felt like I couldn't do that. So do you know that what comes next? That conversation we had and what we did that afternoon was a Saturday afternoon that I speak about that without your details at every live event? I do. Do you know that you

Unknown Speaker 5:44
Yes. dearly. Use? That is awesome. I use that

Scott Benner 5:49
example of what we did together to give people a way to think backwards about things. So like, what I mean by that is, I think normally people think about, you know, you guys have heard me say like how insulin affects the number, right? Like I give insulin to make the number go down. I think that's the extent of how some people think of management. And I like people to be able to think about how food can impact insulin, how food can impact the blood sugar, like, you know, the number like all these different kind of ideas. So I tell them the story of you and I on the phone. And I would love to go through it now and get your recollections of it as we go, because I only had my side of it. So

Unknown Speaker 6:31
yeah, I'll start

Scott Benner 6:31
by saying that I recall, Jen, which even feels weird, she really is Utah, Jen. But I recall, we were on the phone. And my wife and I were dressing to go to where are we going? Oh, we were taking Arden and her friend to see the Nightmare Before Christmas projected on screen while an orchestra played the background music to the the incidental music to the movie through the whole movie. So just the movie and the the words would come out of the speakers, and they would play all the music live, which is was really kind of cool. But we were getting dressed to go to that is my point. And I remember my wife being like, Hey, you don't have time to talk to somebody right now. And I and I showed her your son's graph. And I was like, are you sure we don't have time for this? And she goes, Hey, all right, God, you call her and I was like, okay, so I remember the first thing you told me was like, I'm like, How did this happen? It was Cheerios, right? Mm hmm. Ah, okay,

Utah Jen 7:37
Honey Nut Cheerios.

Scott Benner 7:38
So your kids blood sugar was pegged over 400 on his Dexcom graph? Oh, yeah. And I basically launched into what I think of is probably the same 30 minute conversation I would give anybody in that situation. Do you remember at all what I said at that point?

Utah Jen 7:54
I kind of I mean, it's, it's, it was a little bit of a blur. It scared the crap out of me, honestly. Right. Um, so I think that you said something like, we're going to do something that is going to be crazy, but we're gonna do it, and we're gonna figure it out.

Scott Benner 8:09
Do you want to do something potentially dangerous for your child with a stranger on the internet?

Utah Jen 8:14
We've never met. And do you trust me? And I'm like, Well, I trust you. So let's do it. And you're like, well, I can't guarantee you.

Scott Benner 8:21
There's the tone of Jen's voice in that moment, which was really, I have no other choice. Like, I'm, I'm clearly so terrible at this, that I, I'll listen to anyone like, I think I actually could have come at you right out of a prison door. You know, wearing a suit from 30 years ago, holding my sharpened spoon in my hand. I've been like, I could help you if you want help. And Jen would have been like, okay, I'll try. You know, she just she did not have any where else to go.

Utah Jen 8:47
And the frustrating thing, Scott is that I'm a nurse. And so I was like, What the hell am I doing wrong? Like, how can I not understand this? And that was frustrating even more. Yeah, because I'm like, this is my degree, right? Like, you know,

Scott Benner 9:01
that of the people I intersect with nurses. I swear, I think I have enough data now to say this out loud. Nurses, as parents of people with type one diabetes struggle, maybe more than anyone else in the beginning.

Utah Jen 9:14
Totally would make sense. You know why? It's because we look at it and we have to double check insulin in the hospital. It's a very, very high risk drug. And so whenever you're double checking it, and you're giving it to somebody that you don't know, and you don't know how they're gonna respond to, it's a big deal for a nurse, right? And so when we're like pumping it into our kids, or like,

Scott Benner 9:34
it's this thing that you've been doing forever is super, super dangerous. And you've you've there's actually procedures in place for you to treat it like it's very dangerous.

Utah Jen 9:43
Oh 100% No, so you're

Scott Benner 9:44
in your house with a little piece of plastic.

Utah Jen 9:47
Yes. I'm sitting here injecting a full on frickin unit into my son and I you know, doing that in the hospital, I have to have two nurses double check the exact drying up the exact you know, name And whatever of the insulin and the order and I get to process Yeah, so that makes sense.

Scott Benner 10:06
Yeah, at home, it's just like, hey, here we go. It's like drinking lighter fluid, it feels like more. Okay, so, Alright, so here's my favorite thing. So whatever I end up saying to Jen on that call is me trying to cherry pick probably the most salient couple of details from the pro tip series, and jamming them in your head like ideas that you'll be able to fall back on or that you'll be able to go to the podcast and you know, maybe make more clear for yourself. But then, what happened at the end? Because was crazy, because at the end, I said, Are you okay? And she's not like, she's clearly not, you know, and so I'm like, I'll keep texting with you or something if you need me to. But then I said, Okay, so what are you going to do now? Like thinking that Jen would take some of the information that we spoke about, and put it into practice? But But Jen, what you said was, well, he's hungry. So I'm gonna give him lunch. And yeah, and I looked into kids, blood sugar was still 400. I was like, and I'm like, No, like, I think you were the first person that I actually just ever said, No, no, that's wrong. You got that wrong. Sorry. That's not what we're doing now. So that I said, let's do want to do something crazy with a stranger on the phone. And you were like, all right. And I said, Okay. And I remember saying to you, how much insulin makes this 400 100? And you started talking about ratios? And I said, No, no, stop that. Stop. I don't care. I said, obviously, your ratios don't work because blood sugars for so. You know, just you guess like, ballpark it in your head, just gas. And I believe you said a unit. Yeah. And then I said, Okay, think of his lunch. How much insulin Do you think his lunch is gonna take? And I swear it was fascinating, because you started going? Well, he gets one unit purse, and I was like, Whoa, like five seconds ago. I just said no to this. And it was just interesting to see. And so you guessed it a unit and a half. And I said give him two and a half units. And I'll never forget you said and then it'll eat and I was like, Oh, no, then we're gonna wait. And that 45 minutes.

Unknown Speaker 12:13
Oh my god,

Scott Benner 12:14
I thought you were gonna die of a stroke or an aneurism a number of different times,

Utah Jen 12:20
saying, I was walking around my house going, Oh,

I'm sorry. I can't swear.

Scott Benner 12:25
Oh, keep cursing. We'll turn it into a protein after dark if we have to. So yeah, so the my recollection of it is that it took quite a time for him to even diagonal down out of that high number. And then he he was drifting for a while at a diagonal down number. And the way I tell it on stage is I'm like, you know, she gave her the two and a half, you gave him the two and a half units. And it took a while. And I felt like about 45 minutes later, we were in a freefall, like in the two hundreds, right?

Utah Jen 12:56
Yes. Like double down? Yes. Yeah.

Scott Benner 12:58
Like isn't really, really, really falling. And I said, and you I remember saying, hey, it's okay to make the lunch now. And the funniest thing that's ever been said to me on the phone is you said, I made that lunch a half an hour ago.

Utah Jen 13:13
It's sitting on the counter

Scott Benner 13:14
sitting on the counter. And I was like, watching you really remember this conversation? That's great.

Unknown Speaker 13:20
Oh, how could I forget Scott? Are you kidding?

Scott Benner 13:23
So? So anyway, for the kids, you know, he's eating. And now I'm saying things to Jen that I'm sure don't make sense. Like, Hey, watch the CGM. You're gonna see how the food is impacting the insulin and how it's gonna start, you know, leveling out and coming down and it'll slow. Well, I want to say, around 115, two arrows down. I thought, Hmm, I should have let him eat a little sooner. And I was like, but to me, that was no big deal. And I didn't want to make you feel like a big deal to you. So I said, Hey, john, could you do me a favor and give him a little bit of juice? And you spoke words after that, that I laugh out loud? When I say I it's the biggest laugh in my talk. You remember what you said?

Unknown Speaker 14:07
that'll have me juice? We don't keep juice in the house. Yeah, we don't. And there's a pause

Scott Benner 14:11
on my end. And I must have made a face. Because my wife goes, What's wrong? She mounts what's wrong to me? And I cover the phone, and I look at her and I go, I just killed a kid in Utah. And she's like, what I'm like, Oh, hold on. And so I put the phone back up to my, to my ear. And I said, Okay, Jen. Well, what we're looking and you started saying we treat lows with Skittles,

Utah Jen 14:37
like Skittles, or jelly beans or some something like that. Yeah, yeah.

Unknown Speaker 14:40
And I was, like

Utah Jen 14:42
I said, then I said, but I do have a little bit of lemonade.

Scott Benner 14:45
And I remember saying, Jen, let's not quibble over what juices please.

Unknown Speaker 14:52
I don't know what I was thinking.

Scott Benner 14:54
No, there's no juice here. All we have is lemonade with sugar in it. Huh? Damn. I guess he's got gonna die. And so and so then you were like how much and I remember saying, I don't care, just give them a little bit. Like, I just want to take the speed out of this arrow a little because I had real comfort that the food was in that the food was going to impact them. Listen, I don't know how good your guests was of a unit and a unit and a half, right? Like, um, just based on his weight and what he was doing and what you were planning on feeding. I thought that seems reasonable.

Utah Jen 15:26
Right? It was like a peanut butter and jelly, I think is what he was having with like some berries or something.

Scott Benner 15:30
Gotcha. And so and so the juice did it the juice. Since Jen's cursing all over the place, the juice took the air out of the arrows, right, and it started to slow down. And I don't remember the timing anymore. But we started catching a diagonal down arrow. And then eventually, I think I'm going to be exactly right about this number, his blood sugar level off at 77.

Utah Jen 15:51
Yep, right, right.

Scott Benner 15:52
Yep. Okay. And then the first thing you said to me was, should I give him some Skittles? And I was like, Jen, it just took me an hour and a lot of work of magic over a telephone to get this kid's blood sugar from 400 to 77. With his meal and him, please do not do that. Just be okay. And I remember you feeling nervous. You were really nervous, though. Mm hmm. Why? What about that number made you nervous?

Utah Jen 16:18
I think I was freshly out of diagnosis. If I'm remembering right, I think that was in the winter, because my husband was at work as a ski coach. And at that time, I think we were probably only like, four months out for four or five and I was scared of that number. Yeah. And I don't. Now Now I do. I look at it. And I'm like, Oh, he's beautiful at 75 level, right? Like, perfect. That's where I probably am right now, too. But when I look at like my mom, she is very nervous at him being at right. And so I think it's just that. Oh, my gosh, is it going to turn in? Is it going to just drop when now that I know that? The food is like like you explained that tug of war, the food and the insulin or tug of war ring so well, that it's just gonna stay that way? Like it's not it's not going to drop at 75 of his level. Yeah. And so once I learned that, but that that was the key. I remember my husband came home that day, and I'm like, Oh, my God, let me tell you about what happened today. I called a stranger

Unknown Speaker 17:29
on the phone and let him give my son insulin. You should leave me and take these children.

Utah Jen 17:36
But he respects you so much. And he's like, holy,

funny, you know, and we in an ever since then, I talk about being bold with insulin. I mean, seriously, right? Like this. That's like, catchphrase right there. Because now I'm like, Okay, well, you know what, I know what to do. And, and now when I dose him, I'm not afraid. And I usually go much higher than I think. And we keep them beauty, like nice beauty lines. And of course, I'd like his agency to be lower than it is right now. But I'm, I, I think you remember, I have other things going on in my house in my home too, with my other little boy. And it's like, my whole day is keeping my boys alive and happy. Pretty much. And so it's like, but we're but we're moving in that direction. And

Scott Benner 18:32
we're doing terrific. And and we can get to the rest of the second. But I want to jump back for a second to he's 77. You were uncomfortable. I could tell in your voice. You were very uncomfortable. I wasn't following his CGM or anything like that. And I was about to embark on a 45 or one hour drive to this place where we were going, right? So I gave you my number, like my cell number. And I was like, it's gonna be fine. Don't do anything. And, you know, I hung up the phone. It wasn't. We were not even to where we were going yet. It was a half an hour, maybe 40 minutes later, and you texted or called I think you might have called because I think my wife picked the phone up. And you're like, he's 220 diagonal up. And I'm and so my brain. Like before I answer, my brain runs through this litany of ideas about diabetes, these things that I understand. And I think that's not possible. Like that's just not possible. And I'm like, What happened? Do you remember what you said?

Unknown Speaker 19:29
No,

Scott Benner 19:30
you said I gave him some Skittles.

Unknown Speaker 19:34
I was like, Oh,

Unknown Speaker 19:37
my God, I remember now.

Scott Benner 19:41
So I was like, Listen, I'm about to go into this thing. I can't help you with this again. And then what happens next is sort of interesting because between then and now, I had to round about guess I'd say that we've spoken four times and texted a ton in the last couple of Is that fair? Okay. All right. You resisted this information more than any person I've met so far in the beginning. And I'm wondering if you're aware of that? And if so, do you know why?

Utah Jen 20:15
That I know? I don't think so you don't

Scott Benner 20:17
feel resistant? Did you just struggle with it more? Like? Like, why? Like every time you got a hold of me, I was like, Oh, it's almost like we didn't talk last time. But yeah, were you just struggling to put it into place? Because you're in place. Now. That's why I asked you where you are announced that we can kind of work backwards to it. What was your process from that day, to where you are now? Like, what did you figure out? on your own, that helps?

Utah Jen 20:40
Boy, the only thing I can think about, honestly, is going back and thinking about the last two years of my life have been a complete blur. And to the point where I have been, I was in a car accident in March, and it kind of threw me over the edge. And I've been told by my doctor that I've been living in this fight or flight response mode for the last two, three years of my boy's life. And yeah, from from what we've been dealing with. And now I'm able to look back upon it, because I've been off work since March. And I've been able to really focus on my mental health and my anxiety and mindfulness and you know, changing everything in my life. And I'm actually able to look back on the two or three years and go holy, I don't remember half of it, because I've been living in this literal, high stress, trying to survive every day. You know, working full time as a nurse, there's a high in a high stress job, taking care of my little boy trying to figure out this diabetic stuff, and then dealing with my other little one, too, and trying to keep a marriage alive. And you know what I mean? And

Scott Benner 22:03
so makes a lot of sense.

Utah Jen 22:05
Yeah. Now I look back on it, Scott, and I couldn't freakin figure it out, either. I'm like, why the hell? Am I not getting this? I am not stupid.

Scott Benner 22:13
Because every time you got a hold of me, I would feel like Did someone like Shake what I said out of her head? Yeah, like, like I couldn't. Yes, there was a time I was sitting outside of a store. I forget what I was doing. And I was talking on the phone from my car. And I just thought, like, I started thinking, how long have Jen and I been doing this? Like? Like, like, like, how? How did she just asked me that question. I can't like it was fascinating. Tell me about just for a second, your other child has a different medical issue, which What is that?

Utah Jen 22:45
Yeah, so I'll give you like a down and dirty on it. So um, so my little boy who was three and a half at the time, my older one FOSS was not diagnosed at this time. So this was back in, I don't know, three and a half years ago. See, it's a blur. Like, honestly, it's all a blur to me. He started peeing and drinking a lot and like regressing on his potty training. And I'm like, What the hell does he have type one diabetes as a nurse, that's the first thing that came to my mind. I couldn't keep water in his mouth. I couldn't keep a dry trainer on him, you know, or he was just paying like crazy. And I'm like, I'm going to take him into the doctor. I'm like, Can you guys just check his blood sugar. And they did. And it was normal. So they did a year analysis. And he had really, there was no glucose, but he had really, really high protein in his urine. And the pediatricians like, this isn't normal at all. So I'm going to refer you down to nephrology down at primary children's, and go down there and see what they have to say. And she's like, it's probably nothing, you know. So we go down there, we talked to them, we get this out of a doctor probably shouldn't say that. I probably shouldn't say that. We have a great doctor now. So let me just preface it or follow with that. And he, you know, he kind of goes and says this and this and this could be wrong, this and this. I think we need to do a kidney biopsy. And you know, that was after a couple appointments and bloodwork and whatever. And so we ended up doing this kidney biopsy, I found out that he has this really rare genetic kidney disorder called dent disease. Very rare, and it's also rare because it's not, you don't really have symptoms of it. I think honestly, the only reason why I picked it up is because I'm a nurse, most kids would be like a our most parents I think would just let it they would just let it fly, which is what a lot do. So anyway, come to find out I'm the carrier of it. I got it from my father who had is in chronic kidney disease. And then we I've been able to trace it all the way back. So it's a x linked recessive kidney disorder, which means that it only if Boys. And I, of course, had an older son. And so it affects women as carriers, but it only affects the boys with the disease. So I had a 5050 chance of giving it to fosse as well. And so I'm like, Okay, well, we got to get the genetic tests for FOSS. And so we did, got his blood drawn, sent it off, and we were waiting on the results, and they were taking forever. And in the meantime, fosse started peeing and drinking a ton. Right? And I'm going will show he has done disease, guaranteed. I know it. And it kept getting worse. He started sleepwalking at night, he would lose weight. He had bags under his eyes. I would clean up pee around the toilet, because I have two boys. They're disgusting, right? Lovely, disgusting, but disgusting. I would clean up here on the toilet, and it would be like syrup. And it never occurred to me once that it could be type one, not once because I was skewed towards the stem disease. Yeah. Even though Luke's p was never sticky, right? But still. Then finally I'm like, Oh my god, can I just get the results? So I can treat this boy, you know, there's really not a treatment, but still. And I got the results and they were negative. And I'm like, there's no way. There's no way. I don't believe it. And like a week later, I took him to his karate class. Well, no, a couple days before that. He was up at my mom's house who lives way up in the mountains, like you have to snowmobile up to her house in the winter. She was at he was up there. And he started like having this massive abdominal pain and he was vomiting. And he was just like, Grandma, I can't drink enough. But he was vomiting and sick. And my mom called me She's like, you need to come pick him up. And I'm like, Oh, my God, like, is he passing a kidney stone because that is a symptom with dent disease is a form calcium in their kidneys. And like he had I know he has dead disease, and he's probably passing kidney stone. So I go up there, I grab him, bring him home, give them a bunch of water, put them on the couch, and he starts to feel better. Like he just passed a kidney stone, like in my mind, knew it. Next day, take him to karate. He's at karate. And he's like, mom comes up to me crying and he just looks like seriously. Like, Mom, I do not feel good. And I'm like, hey, let's go. And I just had this feeling in me. I called the pediatrician. It was like five o'clock. They're like, we're closing. I'm like, I'm bringing him in right now. And drive over there. And I'm like, Can you just test his urine? I know you're gonna find protein in it. I know it. Still thinking, Scott.

Unknown Speaker 27:41
It was done. Yeah.

Utah Jen 27:43
And so they tested urine in it comes back and she pulls me out of the room. She's like, Jen, can I talk to you? pulls me out of the room, takes me into the room next to the where the kids were. And she looks at me. She gave me this look. And she put her hands on my shoulders. And I said, I just kind of put my head back. And I'm like, Well, I guess it's a 5050 chance, right? And still thinking it was that disease. And she looked at me and she said, sweetie, she's like, it's type one diabetes. And I just looked at her. And I remember, like, almost blacking out like, no, like, it makes me emotional thinking about it now Sure. Because I remember it so well going. There's no way that this can be happening right now. There's no way and I literally dropped to the floor. And she consoled me for a minute. And I pulled myself together. I said, Okay, what do we have to do? And she's like, you need to get your kids together. They tested his blood sugar, it was 800. And you need to go to the hospital. And so I tried to call my husband he was like on the way to the dump or something to like, dump a bunch of crap or whatever. And it kept cutting out. And I'm like Scotty fosse has type one diabetes, and he's like,

what you're cutting out I'm

Unknown Speaker 29:09
throwing away a refrigerator. Leave me alone.

Utah Jen 29:11
Yeah, I'm like, and I called him back and it kept cutting out and cutting out and cutting out and I'm like, oh my god. Finally like I got I told him and he's like, Oh my god, like it rocked us. Right and so we met at the house and went down to the doctors or the hospital and the rest is that but I just the way that it presented and skewed me was insane. And that's part of the reason why I wanted to come on and talk about that also is because I listened to that podcast that you had with the woman who had lost her son and that was a tear jerker. And I said to myself, I'm like, you know, I think that people need to hear That, because it's hard. And it's so like it. Diabetes alone is so hard with your kid. And you add other things, and it just is so much, you know, I have to, my little boy has to drink 90 to 100 ounces of water a day, and he's six. And that that alone right there, dictates his kidney function. So if he gets dehydrated, it could put him into kidney failure. And so keeping him hydrated and keeping my other boy alive with insulin, and you know, it, it's everything. And I want, I really wanted people to know that it's okay to feel overwhelmed. And then I listened to your other podcasts with the couple that you had on there who spoke about how it's really not talked about how couples feel. And those two episodes to me just stuck with me so much. And that's where I'm like, you know, I really want people to know about this just just because it's just, it's unexpected, and life throws things at you so hard. You know?

Scott Benner 31:13
No, I was thinking, as we're busy researching what might be a third autoimmune thing for Arden. And we're trying to figure out why she has incredible tension in her shoulders, and her joints, sometimes her neck and can be your ankle on her knees, and you're trying to figure out what all that is. And for a long time, we thought maybe it was just their thyroid medication was off. She had low iron. We thought maybe it was that. And we're, you know, it takes a while to find a physician that can even be helpful, who doesn't just read, you know, lab results and tell you know, that's fine. This is okay, sorry. You're right.

Utah Jen 31:50
Yeah, yeah.

Scott Benner 31:53
And we're picking our way through it. And I don't know what's gonna come of it, if it's gonna just, you know, I have no idea. And it very well could end up that she'll have a third autoimmune thing. And it may end up that she doesn't, maybe we figure out something with diet, or I have no idea, right? Like, I just don't know where we're at yet. And it made me wonder if I was going to tell my kids that you have to really consider this before you have children because of the impact it has on your life. Yeah, it's really substantial. It changes it changes the course of almost said possibility. And I mean, you can fight through it and still do things. But it's just always there. It's, it's like, it's like, I don't know, it's like some sort of like torture, just a buzzing in your ear, or a light that no one will shut off. You know, just it just, it just doesn't leave you alone, ever, ever. Yeah. And you and it's as much of an impact as it has on you. And as hard as it is on relationships. It's even, it's harder to look at your kids and think something else is gonna go wrong. Like is like, like, forget, is this gonna go bad? Like is something else gonna happen? Like, I think all the time like Arden was to when she got diabetes, and she was, I don't know, maybe 13 when we figured out the hypo thyroid thing, you know, life seems like it's piling up on her quicker than it does on some people. And, you know, is that going to be like, what is that going to mean for her? You know, and I don't know, it's just, it's hard. And I'm, I wish, I don't know what I would have done differently. But I do wonder if somebody could have come to me in my 20s with all certainty and said, Look, you met a girl, you love her, you're married the two of you, we're going to make a baby together that has type one diabetes, and this other issue and maybe a third. If I wouldn't have just said like, maybe we should just make some money and travel and, you know, yeah, just not what someone else

Utah Jen 33:51
through this. It's crazy to think about that, isn't it?

Scott Benner 33:54
Yeah, no, it's terrible. And I'm not wishing my kids away. I'm just saying it's, if you really think about it, it's, it's there. And it's a lot to think about. Today's show is sponsored by Omni pod and Dexcom. And I'd like to tell you a little bit about both of them right now. The Dexcom g six continuous glucose monitor is absolutely the greatest tool that I have ever seen, for making decisions about insulin, and food and diabetes in general. Why is that? Well, because with the dexcom g six, you can see the speed and direction that blood sugar is moving, not just the blood sugar, which is helpful like to know hey, my blood sugar is 95. It's 130. It's 310 whatever it is, but what if it was 130 and moving up, and not just moving up, but moving up at one or two points per minute, or three points per minute. If you knew that just with these little directional arrows that give you that information at a glance. In case that's not enough the person wearing the dexcom can share their information with up to 10 followers. So your child could be at school while you're listening, you know, at home to a podcast and all of a sudden your phone just might go beep beep. And you think, Oh, I know what those two beeps mean. My child's blood sugar has moved above the threshold that I set for it to alarm yet, so maybe you want to be alarmed at 140 I like being alarmed at 120 that's when I like to know my daughter's blood sugar's moving up. I want to know when you're going down. You can set an alarm for that as well. Huh? This is making sense to you. dex calm down.com forward slash juicebox. Get in there, find out more. Do the reading. Figure out if it's something you want. And if it is get going. I'm going to tell you right now you will not look back. This will be one of the best decisions that you've ever made. Another terrific decision that we made here was getting Arden the Omni pod tubeless insulin pump. This is something we did many years ago when Arden was four years old. And as you know she just turned 16 Arden has been wearing the Omni pod for 12 years, every day. And it never fails to do exactly what we hope and what we need. There's the little things right? Temp Basal increases and decreases. Extended boluses pumps do that. But the Omni pod does it without tubing, you are not attached to anything when you were and on the pod, no controller, no tubing, no muss, no fuss, this little device, you put it on, you wear it, you can hide it or wear it out loud and proud. Doesn't matter. This thing is terrific. You should be able to experience it for yourself before you decide to make the plunge to take the plunge. You can my omnipod.com Ford slash juice box go there fill out the tiniest bit of information on the pod would be thrilled and they will expediently that is not a word but quickly is what I meant. send you an omni pod demo to try on. They call it a pod experience kit. It's very exciting. It comes in the mail, you pick a spot where you want to put it you put it on. And then you go about your life. Your work, you play your baby asleep, you see what it's like to wear it on the pod. And if you decide this is for you, on the pod is the way I want to go. You move forward with the process. And if you don't, on the pod does not bug you about it. I don't like they're not like knocking on the door like, Hey, we sent you a demo pod. What do you want to get me going tomorrow? They don't do that. They just go you didn't like it? Whatever. Cool. That's why it's worth trying. Miami pod.com forward slash juicebox. No Obligation means give it a whirl, see what you think. I mean, the demos free, you have nothing to lose. There are links in your show notes to all the advertisers. And at Juicebox podcast.com. If you can't remember, the ones I've just given to you.

It's a lot to think about.

Utah Jen 38:05
It is it's a lot and especially I've and this also will kind of play into where I've been the last few years is with my mindset and like everything was kind of it's been this, this full on blur? Because I am the carrier of it. Right? So I'm the one that gave it to him. And I also have hypothyroidism so I have an autoimmune disease. So here I am thinking the doctors like Well, you could have it could be your problem for the type one blow, you know, and it's like, oh, gee, great

Scott Benner 38:38
thing to have to say. Like, why does it matter where it came from? It came right came from randomness is where it came from?

Utah Jen 38:44
Yeah. And so, so yeah, you sit there and you beat yourself up about it? Well, if it if it wasn't for my genetics, I wouldn't have given that to my boys, you know, or boy, whatever, you know, and it really messes with your mind, especially when you're trying to figure it all out and still live a normal life and keep them normal and, and grow and help them to be raised. Feeling their normal. And that's a big deal for me, is I'm not letting type one affect my little boy to the point. I'm trying to not let it affect him to where he feels that he can't have something or, you know, he can't go to a birthday party or whatever, you know, it's like, and you still get those comments from people at school or you know, neighbors or whoever, whatever that say, Well, he can't have this cupcake. Or he can't have this and it's like no, he really can. He can eat the entire cake. As long as I figure out what to dose him with. And it's okay. And I'm not afraid of it anymore. Like literally I could set a birthday cake in front of him and dose him and and Scott By the way, with the honey materials. I haven't died. He ate a big old thing of Froot Loops the other day. dialed it, it didn't go above 120 Wow, beauty,

Scott Benner 40:06
I feel pressure for that. Made you understand how to use insulin, that's really cool. Yeah, and you can use it with anything, it's because

Utah Jen 40:14
my mind is more clear. And everything has become so much more calm and clear in my life. And it's, it's helping my kids to you know. And so that accident that I had in March was actually a really good thing. The concussion that I had, and all that stuff was a good thing, because it took me out of my fight or flight mode that I was living in for so long. And made me realize, hey, you can't you literally can't live like this anymore. It's gonna kill you if you do. Nothing. So it helps to hear you say this to me. Because it really does, because it helps to justify what I was feeling those two years. I'm saying

Scott Benner 40:57
no, I'm really glad I like I said, you said it earlier. Just you were a reasonable person, and you're intelligent, you understood, and then we get back together. And it was almost like you were calling to say like, Can you explain this to me again? And? And I was like, Huh, this doesn't make any sense. And now with contacts that I made, I guess it makes perfect sense, honestly.

Utah Jen 41:20
Yeah. And and I'm I get it now. And I do want to say that I'm changing, changing paths in my nursing. And I'm going to get my CDE. And I'm going to be working for a small nonprofit clinic here in town to help people with diabetes, all sorts, and working with this amazing internal medicine doctor to build this beautiful diabetes program. And so I'm like, jumping in full bore with my clear mind, and a whole new outlook on it. And I'm so excited.

Scott Benner 41:55
That's lovely. It really is. We all have to find a way to help each other because, I mean, listen, I feel like I can hold myself together. As long as the things that happen to my children are manageable. Like I don't expect the perfect life. I don't get mad at people who have lives where they don't run into medical issues, right? Yeah, that's not my thing. I just realized that somewhere beyond manageable. If something happened, that was your reparable just life changing, you know, couldn't leave a room couldn't do a thing. couldn't function that I don't I honestly don't know if I wouldn't be exactly in the shoes you were describing. If I wouldn't just zone out and think Yeah, alright, let's just just keep everybody alive until you know, until this is over.

Utah Jen 42:46
It would be pretty hard when I got the call from the doctor telling me that they thought it was dengue disease. I remember I was in my kitchen and my husband wasn't home yet. The kids were out back playing. And he goes, this is what I think it is. And I'm like, Okay, well, what the hell is that? And he's like, well, it's, you know, it's all dependent on it can it can cause kidney failure between anywhere between the third to fifth decade of life? And like, What do you mean? And he goes, Well, he could possibly need a kidney transplant. And I just sat there. And I'm looking at my three year old playing in the backyard on the swings, and I'm like, like, you could imagine.

Unknown Speaker 43:28
No, I can, yeah, I and

Utah Jen 43:31
my husband came home, I told him in the kitchen, and he, he just started crying. And when you see a grown man just full on start bawling because of his little boy, it's it's traumatic, and it was rough. And so I, I do I want I want people to I want I want it to be heard that. That is definite PTSD. Like it's it changes your whole entire life. The whole thing. And, and then to have, you know, let's see so far. He was Yeah, so less than a year later, Foster was diagnosed with type one.

Scott Benner 44:11
Yeah, while you're still fresh in this other thing. I'm looking here just for context for people dense disease is a rare genetic kidney disorder characterized by spillage of small proteins in the urine, increased levels of calcium in the urine, kidney calcifications. recurrent episodes of kidney stones and chronic kidney disease dense disease affects males almost exclusively. That's your that that's a good clear understanding of it.

Utah Jen 44:36
Mm hmm. Okay, Yep. Yep. And it can be so various, you know, from person to person in a family. Somebody can have like my little sister, who is my dad's daughter. My parents are divorced, but she is my dad's daughter. She is a carrier of dense disease too. And so and then what do you know she has two little boys and her oldest who's three was diagnosed with Then studies as well, and then her youngest one and a half has not been tested yet. So, but difference, you know, like Luke's kidney function is down. I mean, he's in stage two chronic kidney disease. Her little boy has fine kidney function. And so it all totally depends. You don't know how it's going to affect you, my dad 60. And he has, I think, what 18% kidney function right now, he needs he needs to be on the transplant list. I think he's going to be there soon. But he's 60. You know, and he never knew he had this until two years ago.

Scott Benner 45:36
Right? And so is your son. Like, is this progression quicker?

Utah Jen 45:42
Um, I don't, I don't know, the doctor that we first saw, he put him on some pretty strong medications in the beginning, I think which put him into like an acute kidney injury, and kind of took down his function. For a while we took him off those meds I went, I flew out to the Mayo Clinic to see a real specialists on this, because there's very few, I think that they're probably the only ones. And he says, Now these are way too strong for him. He's too little. And they took him off of them. And his function came back a little bit. And they can't they won't tell me you know that if that is what kind of took it down. But they said that, and he's been staying nice and level for the last year. And so I'll take that, you know, we we pump him full of water all the time. And he's a great trooper with it.

Scott Benner 46:32
Um, how frequently does he have to give blood for testing to track function?

Utah Jen 46:38
every three months?

Scott Benner 46:40
Yeah, Arden's been given a lot of blood lately to try to figure out her other issue. And, you know, it starts off. It just it feels like a drudgery and then all of a sudden, I don't know what's worse, it stops being a drudgery and you get accustomed to it. I'm not sure if it's worse to struggle, or if it's worse, to just be okay with it. I don't know if that makes sense or not. But

Utah Jen 47:02
oh, it totally does. And then add the fact that I'm a nurse. And so I can pull up his records. Right, right, right when they come up. And I look at the numbers, and I know them. So because I look at them all the time for my job. And so being able to look at the numbers and go, Oh crap, why is this? Higher? And this lower? What can I do? You know, and it's that, that nursing brain takes over? And everybody's like, Oh, it's a good thing. You're a nurse, you're in good thing. You have these kids? And really, it's like, man,

I almost wish I didn't know. Yeah,

Scott Benner 47:36
and I gotta say, it's a weird statement to say that because you decided to go into nursing. It's good that you got a child with dense and type one diabetes.

Unknown Speaker 47:43
Right?

Scott Benner 47:44
odd sentiment today for somebody? Like Thank you. Thank God, your mechanic your car breaks all the time,

Utah Jen 47:50
right? Yeah. Do you think you could

Scott Benner 47:52
if we were wishing for things? Couldn't we just wish for them not to have dents in type one diabetes, instead of this? This is an odd wish to have. Yeah, I get people intent. But it's odd.

Utah Jen 48:02
Yeah. Like if my little boy was to go and have kids, the one would dent he would if he had boys. It would be gone. And it wouldn't be passed down the family. But if he had girls, they would be they would have a 5050 chance of becoming a carrier. Or no, they would be 100%. carrier. So it all depends on what Luke has for kids. Yeah. And but I have to say, I have to follow it with this being the determined mom that I am and the one that's not going to let just anything just be like, okay, here it is. When I was told that he had it, I sat there and I'm like, okay, medicine has come so far. And I know that we're not to where I'm just going to be like, okay, he has this rare disease. That's it. I searched and searched and searched and I found a top notch medical center back east. And I've met with them. And we are funding a research project with them to to try to find a way to genetically modify the chromosomes of the of the kidney, or the DNA where that disease is, and so there's a specific spot on the DNA where it's affected. And there's this thing called CRISPR. And it's a genetic editing tool. Like Think of it as little. Yeah, it's pretty amazing. So we have a different we have two different ways that they're that they're researching it, but CRISPR is one of them. And we've funded it and we're in the we're beginning the third year of it, they've created a colony of mice that have done disease, and they are now going in and testing the DNA to see if they can extract that defective part and replace it with a non defective part in reverse the disease

Scott Benner 49:58
genetic engineering That's very cool.

Utah Jen 50:01
It's pretty amazing. So I have to say that, you know, by the time it's, it's a problem for him, hopefully later in life, we're going to have a cure for it. And I'm pretty proud to say that, you know, I have been moving along. Yeah. Yeah, that's very cool.

Scott Benner 50:19
I don't, I can't imagine how just comforting that feels to be able to do something towards a possibility.

Utah Jen 50:27
Hundred percent. Yeah. There. I just wasn't okay with just letting sitting there and letting it go. Because there's no research on it. Because it's so rare. Type One, diabetes has a ton of research, obviously, right? But this, there's none, because the NIH doesn't want it. They don't want to have anything to do with it. Because it's so rare. So the only way that these rare diseases ever get figured out is by families. And luckily, my father in law in my mother in law, were kind enough to help us with this and to put the money into the research it and I pray to God that every day that it that it works out, and I have these amazing doctors that are world renowned working on it with us, and I just feel so I just that's that's my hope, you know, so it gives me that whenever I get scared and nervous. I just think of that and go Okay, you know, I have I have an amazing team working on this everyday for us right now. Literally for my boy,

Unknown Speaker 51:25
that's excellent.

Utah Jen 51:26
Good for you. So, yeah, it's pretty cool. It really

Scott Benner 51:29
is. I mean, when you stop and think about this, these little ideas, like I mean, right now, like I'm saying, Arden's got no. constant tension, like muscle tension, right. And it stopped her from playing softball. It's, you know, she tried to she was trying to paint her room last night, and she couldn't hold her hands up over her head. She's like, my hands are getting numb. You know, like, so? severe it. Yeah. And it can definitely be and you're trying to figure out everything and and, and you stop and think about what it really is. There's just something like autoimmune, right? If it is, and that something in your body is just telling something. I don't know the details of it, right? But something's telling something, hey, make this stronger, instead of weaker, make this weaker, instead of stronger, you know, inflame here instead of there, or, you know, it's just the oddest thing. It's just, it's a, if it was a computer, you would just, you know, we just tell it, no, stop doing that. And that would be the end of it. And that is really what you're talking about with crispers is going into a gene and saying, hey, look, this thing here, we're gonna remove this and put something in that, that that works better.

Utah Jen 52:38
And then your body will just proliferate it and just, you know, be like, Okay, I see that this is the way that it is now. Yeah. It's pretty amazing.

Scott Benner 52:46
Very cool.

Utah Jen 52:47
Yeah. Yeah, I feel pretty, pretty fortunate that we have it going. I feel that I'm actually trying to do something about it.

Scott Benner 52:53
No, no, I agree with you. I really do. And it's beginning to go back a little bit. There are times when Arden like jokes about, I'm gonna just say like, I'm not gonna have kids I'm gonna adopt. And I do wonder sometimes if she doesn't really mean that if she doesn't mean, like, I don't want to give somebody else diabetes, like like, I don't know, if I've never really asked her she's too young. I think dig into it too much. Because if she's not thinking that I don't want her to

Utah Jen 53:20
write, or Oh, yeah, put it in her brain, right? What are the chances Do you know?

Scott Benner 53:25
I mean, in the end, they're not that much greater. I think the numbers like 10%, or something like that. But I think I don't even think that's how she's thinking about it. I think she's thinking about it of like, okay, so say I have a kid that doesn't have type one diabetes, and he has a kid that doesn't have type one diabetes, but three generations later, someone does again, and could I have put a stop to that? Like, like, I think that's what she's thinking about? Like, could I be the one who doesn't let it happen here? And I don't know if that's really well thought out as she's a pretty young person. Or if she even or if I'm misunderstanding or, but I don't know if she did it. I don't I think I would think of it as a kind of selfless, you know, yeah. And so I don't know, I really have no idea what's going to end up happening. But I can tell you that I've spoken to people who just very recently, a woman who told me like I am I'm not having kids because my life experience. I'm not gonna I'm not gonna put it on somebody else. You know, so I was like, okay,

Utah Jen 54:30
geez, that's amazing. You know, I, I look at it as

it's a hurdle, and it sucks ass. Bad. But I also am trying to teach them that everybody in this world has something either. If we don't have it right now, we're going to have it and it could be bad. It could be a nuisance, and it could just be like, you know, whatever. But somebody is always going to have something and um, And I've really been trying to teach them to, to not just look at the, at the person, but you know, deep down, you know, the kid next to you in class could have could have a G tube and have to have tube feedings. And you don't know about it, you know, the kid next to you could have had a open heart surgery or a heart transplant. You know, I mean, there's so many things that kids have and deal with every day. And type ones manageable. And I've learned that from the past. Yeah, however many years, it's manageable, it's sucks. It's a disease. But you know what? I think the more that you give them, the power and the confidence in it. And you know what, and just to let them my little boy has a therapist that they talk to every week. And just letting them voice their anxiety and their frustrations in their their worries. helps a lot. Because it's true. I mean, it's scary. And it's it all of a sudden takes over your whole world. And it brings out anxiety in kids a lot. And I agree, I sit there. And I'm like, What the heck is going to happen? And when they turn teenagers that that worries me?

Scott Benner 56:16
Yeah, yeah, I think that's that other person's point, too. Is that not? Maybe it isn't even so much? Like, I don't want to put somebody else through this, but I don't know if I have it in me to basically do it again. You know, like and watch it, you know, is hard enough doing it? Now I'm gonna watch somebody do it. I just think that some people, they don't want that they can't handle it. And you know, I think good for them to for realizing what they can and can't handle to

Utah Jen 56:42
Oh, yeah, you know, it 100%

Scott Benner 56:46
it's a it's a lot. Well, Jen, Listen, I'll tell you what I figured out here in the first bit of this conversation is that of the people from Utah who come on the show, of which if you listen, you know, there are many, you're clearly not Mormon, because you've cursed about a million times since we've been.

Utah Jen 57:01
And I've actually toned it down a little bit.

Scott Benner 57:04
Yeah, I know that. from talking to you privately. This easily could have devolved into just me saying and you saying other things like that? Oh, totally the whole time. easily could have gone that way. But yeah, wow. Uh, geez.

Utah Jen 57:21
Born and raised in Utah. And never, I was never, never LDS and I attended a high school that I was the only non Mormon High School in, or no, a non Mormon person

Unknown Speaker 57:31
in that school. Mm hmm. That's interesting. Pretty interesting. Yeah. So

Scott Benner 57:39
I wonder if you wouldn't tell me a little bit about you. You talked about your husband's reaction to the dense diagnosis. How did it How did it hit him? The type one a year later? Was it just were we just numb by them were just like, was waiting for something like this? Or, you know, how do you feel then,

Utah Jen 57:58
um, I it hit him hard to it was on May 9, when we were diagnosed, and his birthday was on the 11th. And so we were still in the hospital for that. And I remember driving to the hospital. And I was just in this daze. And he was sitting next to me. And I took his hand and I said, You know what, we have to be so strong right now. And I already knew that we were struggling from the previous diagnosis. Because we were both mentally trying to figure it out, and to come to terms with it. And I said, this is not something that we can't have amazing communication with, like,

this is gonna bring us to a whole other level. And

he just sat there, just looking ahead, and he's like, okay, okay. You know, I mean, he, he was just, you could tell he was just shocked. just scared. And he didn't know what to think. I don't think he knew like the he didn't know the extent of what it was going to be. And then they had, and then he dropped us off at the hospital. And then we stayed the night, and I stayed with him. And he went home with my little boy. And, of course, just sat and thought about it, and was like, and researched it, and then it kind of hit him. And he's like, Oh, my God, like this is non reversible. This is never gonna go away. And it's 24. Seven, all the time. You don't get a break from it. And it hit him hard.

Scott Benner 59:35
Yeah, well, you got that. All right. Well, listen, I mean, you can try to be upbeat about it and say that this is the these are the cards you have and you need to play them, you know, whatever metaphor makes you comfortable. And I believe that and I definitely operate that way. It doesn't stop me from wondering if there isn't a barrier that if we push past I my brain just When God bless, you know, that would be enough for may be too much. But, you know, until then I just you just keep doing the things you need to do the things you're supposed to do and the things that work and have the the foresight to look and see the things that aren't working. You know, look at you, you may have really saved your son by, by balking at that that medication, you know, you never know the doctor could have put him on something that would have just burned his kidneys out in, in a year. And you wouldn't, and you would have had to look back and think I gave him that pill every day. Like I did. Like I literally facilitated that somebody else told me to do it, but I handed it to him. And totally Yeah, I think about that a lot with you know, even just thyroid medication, you know, when you're trying to mess around with levels define where it is. And, you know, doctors are like, well, I'll try a little more, try a little less, and they get hyper and then they get you know, you they bring it back a little bit and you're just like, wow, that just happened. Now look at her struggling and I every day said to her, like take this, take this, take this. And I'm doing it on the advice of someone else. But

Unknown Speaker 1:01:09
yeah, but it just it's that

Utah Jen 1:01:11
gut feeling of a parent, and you have it too. I was gonna say the mother's intuition. But those dads, you know, that are with their kids all the time you got you have those gut feelings. And you know, when something's not right,

Scott Benner 1:01:24
yeah, yeah. And then and then I find myself thinking about every day that I don't figure something out for her. I feel like I wasted a day of her life. Yeah, and, you know, it's probably why I figured this all out for insulin and, and put this all together. And then I felt so burdened by it. I thought, Well, how do I not tell someone else? Like, other people feel like this? You know, so I'll put it out to the world and let other people take from it if they will, hopefully, people will find me quirky and hang on to the podcast and learn something like you did. But but just all the other things? I don't know. I just wonder, like yesterday, if Arden didn't feel well, like what would she have done if she felt better? And, you know, and how many other days are going to get pissed away until I can figure out what to do for or come up with the idea that there's nothing to do for at least be able to feel like you exhausted every option. And sadly, you just don't have an option. But But at least I won't wonder, you know, to me, like finding out like you can't impact it would be better than spending every day thinking there was a way to impact it, and you weren't figuring out what it was. I don't know exactly that makes sense or not. But

Utah Jen 1:02:50
100%. I mean, that's exactly where I'm at right here with this research that we're doing. I either could have just sat back and said, Alright, here we go. There's nothing, there's no treatments, you just kind of wait, you have no option. Because there's nobody that knows anything about it. Or you frickin try to figure it out. And if it turns out that nothing can be done, you know what, at least I tried, and at least I put a really, really, really good, valiant effort into it. Right? And it's the same with you, Scott. But I also think that you can sit there and I've learned this over the last three years of chaos, that you can sit there and beat yourself up every day, even though you're not really beating yourself up. But you can think those thoughts and say, What if and why and this and that. And trust me I do every single day. But I also listened to your podcast and I think good lord, this girl is getting so many amazing tools for her life that she is going to be so well taken care of. And no matter what it throws at her. Look what you've done.

Scott Benner 1:04:10
Well, that's very nice. I thank you. I I tried to believe that whether Arden is even aware of what the podcast does or not, that like her life led to other people doing better. Like I I take some solace in the fact that your son is healthier today. Because my daughter has diabetes and

Utah Jen 1:04:33
absolutely and I look at what you post and her graphs and they're beautiful, and how your high is what 120

Scott Benner 1:04:42
we try to react at 120 and you know and stop spikes I consider a pretty major spike 180 that's definitely how my mindset is around it.

Utah Jen 1:04:54
Okay, and see and you've won off on me like that, too. When I see him starting to climb. Done. I deal with it. And it's because of her. And it's because of hearing how her agencies are and that she's basically she's living in a non diabetic agency range. Yeah. And so think of what you're doing for her life in the diabetes realm. Right? So you're taking all of those complications that she could be getting from this later. And you're just you're taking them away, because of what you're doing for her and teaching her. That's huge. Scott,

Scott Benner 1:05:27
I hope so.

Utah Jen 1:05:29
Yeah, it's huge. And so the things that she's, she's a strong, strong girl, and so for her, to be able to overcome whatever's coming up and gonna be, I hope that we're you guys are able to find answers for it. She's going to be okay. And she's going to take it and she's going to be like, you know, what, this probably doesn't compare to what type one is. That's my goal,

Unknown Speaker 1:05:51
like, you know,

Scott Benner 1:05:54
and I do but by the way, a lot of what you said I firmly believe in she is mentally tough, and not in a way where She's ignoring knowing what's happening to her. And she is, she's got a great I don't know, just a vibe about her. That's, that's very positive. Even like, you know, right now, while we're, you know, going through all this, you know, and trying to figure out something new and she's struggling, she still has a very good sense of humor about it. She says funny things like, Hey, tell me the truth? Did you just make me for spare parts for coal, and then just didn't need the parts? And now I'm just rotting away? Like, she's like, what's happened to me? Exactly. And I'm like, No, you know, or so, you know, she's just, I don't know, she just, I know, she's frustrated. And she obviously should be. But it the frustration doesn't get internalized, it doesn't turn into you know, she's not drinking and getting high. And like, you know, like, you know, doing, she's just, she's doing the things she needs to do and, and being patient. And I think a little hopeful. And, you know, I told her last night, I said, Look, I know we're not getting through this very quickly. But I want you to know, like I'm every day mom and I are trying to figure it out. Like we're not, you know, we're not slowing down, we're not stopping it is tough, because you kind of want to just throw all your responsibilities away and just dive into this thing until you can figure it out. But sometimes I think you have to do it, you have to make your way through it, you have to meet a doctor who looks at something and then says, Ah, you know what, he had to go talk to this person instead. And you know, like, there's a process there, like everybody in the world doesn't have all the answers. And there are plenty of people who are, you know, endocrinologist that don't understand diabetes, just like there are plenty of people who are other kinds of doctors who don't really completely understand enough to help a person all the time, you know, what, so you gotta, you got to keep swinging until and make connections until you meet people who, you know, like, are the right people, it's a very random thing. And it's not fair. But

Utah Jen 1:08:02
it is. And another thing I have to say about it, and that I've learned is don't feel that you have to take the medical care that's around you. So like the, like you said, making connections and finding people that are having similar situations and whatever. And then looking outside of that. And like I said, I I have doctors at Rochester in Mayo, Mayo in Rochester, Minnesota, I have doctors in North Carolina, and, you know, these specialists that help provide things that aren't anywhere near Salt Lake that the doctors that I go to don't even know about these doctors. Yeah. And so it's it's finding the people that it's finding them

Scott Benner 1:08:43
and bear out there and being hopeful that it exists to it. And by the way, some people don't even have the, you know, they don't have the money or the or the connections to do things like that. And I think that one thing that I find to be important is that when you eventually end up online looking for answers or support, you have to remember that there are always going to be people who have for probably sometimes very good reasons given up. And they're just in a management scenario. And that might not be the right word Exactly. But just like I'm just gonna get by, like, tell me what I have to do to get by with this. And when you see a lot of those people collected in one place, you have to be careful that you don't expect that that's just, you don't start thinking that's the expectation, this is what's going to happen. Like, I'm going to end up here too, because there are plenty of people who won't end up there if they keep looking for other avenues. And I think that's important not to get sucked into other people's misery. And totally that isn't, that isn't to minimize their misery. But if their pathway didn't lead them to a doctor in North Carolina, when they lived in Utah, or that pathway didn't lead them to a podcast that taught them how to Pre-Bolus or whatever it is, you could end up thinking that there were Reality is the ultimate, you know, this is what's going to happen. And that's, that can very often not be the case, it's just very easy to get sucked into other people's misfortune. And a lot of times support can turn into. There's a word I'm looking for that I can't think of It's, um, I guess misery loves company. There should be a word around that somewhere. But at some point, when you feel like you've reached the end, and there's no answer, and you meet somebody else who does too, that then becomes your bit of hope. But if you're not to that part yet, it could suck you in like a black hole before you have all your chances to try. So I just I'm trying to say to people, like don't give up. And there are a lot of answers for a ton of the things that you're going through.

Utah Jen 1:10:44
Not everybody, follow your gut feelings, follow those instincts. Like if you think something's wrong, follow it. Yeah. And because, you know, you know, best

Scott Benner 1:10:53
and, and hopelessness can be depression, too. Yeah. If you really start feeling hopeless. It's not because there's no hope a lot of times, I mean, listen, don't get me wrong. Some people have no hope. I'm not saying that. But you know, for a lot of people, hopelessness is just is sadness. And it just doesn't mean there's no hope. That's all

Utah Jen 1:11:13
right. There's an even for the people that don't have hope. I think that they they do they just need to find where it is it there's something there? Well,

Scott Benner 1:11:22
yeah, in a very minimal way talking about diabetes. That's part of the reason why I think sharing your success is nice, because a person who feels hopeless can see a, you know, a more stable graph, and think that's not possible. And they can be mad, or they could see it and think, Hmm, maybe there's something I don't know that that person knows. I want to find out what that is, you know, like me, I think other people's success should feel hopeful. Not accusatory, not like, Oh, look, you're not good at it. I am. That's that shouldn't be the case. I think you should let them think, oh, that guy's got to know something. I don't know. I want to find out what it is, you know,

Utah Jen 1:12:02
yeah. And it kept it kept driving me because I kept hearing people that you had on the podcast that would listen to you for a couple months, and then be like, I got it, you know, like, beauty. And I'm like, What the hell? Why can I not get this? And?

Scott Benner 1:12:17
Well, it turns out, your brains were scrambled.

Utah Jen 1:12:19
It was it was too much like my brain It was my brain was just not it was not functioning it was in it was in survival mode. And now that it's not, and I mean, it's it's awesome. Like Farrell, there's days, I love those days like that you talk about the days that you don't even really mention the word. And, and Arden doesn't really think about it, you know, granted, does she think about it, when you have those days, I don't know.

Scott Benner 1:12:48
We're at least not talking about it. It's not a subject of conversation. It's not eating up minutes and seconds and hours of days. So I mean, I'm sure it's in the back of your head, like I said, like that this, you know, a buzzing sound or a light that won't turn off when you want to go to sleep, but it's not overwhelming. And it's not the first thing at the front of your head. And I think

Unknown Speaker 1:13:06
she going back to school.

Scott Benner 1:13:08
No, no, she's gonna do it from home again for another semester.

Utah Jen 1:13:11
Yeah, am I? Well, just because she likes it.

Or is it because I've had the option? Uh huh. And

Scott Benner 1:13:20
I think she liked it better. Yeah. So as long as the option existed, I'm think she's like, oh, I'll do this. Yeah, plus, it gives us a good chance to, you know, work through everything else that's happening, because there are times where she's, she's very tired. And just you know, and so she can at least get up and make it downstairs and do her schoolwork. She doesn't have to get up and take a shower and get dressed and do a whole thing. So buys us a little more time to kind of figure out what's up.

Utah Jen 1:13:48
Are you guys, um, do you think you're close to to maybe figuring something out? Do you feel that way? Well, we

Scott Benner 1:13:53
were it's, you know, it's a process of elimination. I think it ends up being so I you know, we're we have actually an appointment a couple of hours to talk with a doctor about her last bloodwork. And I think we're going to get her, her thyroid medication definitely settled into where it belongs. And then I'm not sure if she might offer up one more suggestion here. And then if that doesn't clear, the muscle pain and the kind of the, the soreness, then I didn't we'll move on to I mean, I'm guessing a rheumatologist next and try to pick through that. I mean, it's not you have to understand that it's not so terrible that she's not curled up in a ball, right? Like it's, it's just it's muscle tension. painful joints, sometimes not always. And then, you know, more painful sometimes than others I should say. And she'll sometimes say like, it feels like our bones are bruised. It's the way she describes it. So, you know, we'll we'll follow that path and see where that takes us. Next.

Utah Jen 1:15:05
Yeah, it's hard to see your children in pain.

Scott Benner 1:15:07
It certainly is. Yeah, definitely not something I would recommend.

Utah Jen 1:15:12
No. Yeah. But it makes it makes you as a parent stronger. And it makes you and your child's relationship stronger to in a weird. Not okay way.

Scott Benner 1:15:25
I hear what you're saying. As long as it doesn't kill me. I guess I'll be alright.

Utah Jen 1:15:30
Yeah. And as long as it as long as it doesn't take you to where you can only handle like it's true. Your brain in your body, as a human can only handle so much stress until it will just be like, can you have done? Yeah.

Scott Benner 1:15:43
That's off. So you don't make yourself completely insane.

Unknown Speaker 1:15:45
Yeah,

Unknown Speaker 1:15:46
yeah. Well, I mean, hopefully you can come back from it.

Scott Benner 1:15:50
Alright, well, I feel like this was uplifting. And at the same time, I can't be certain.

Utah Jen 1:15:55
Right? It's it's life, Scott, it's life. It's the way it hands it to you. And it's the way that you're going to take it and look at it and tackle it. I'm not going to let I'm not going to let these two things. Bring my kids down. They're going to live an amazing life and become amazing men, with amazing families and live to be grandpa's, you know, that's, that's what we're going to do. And they're going to take life and they're just going to be like, Okay, let's do it. I'm strong. I'm a badass little boy. And I'm going to become a badass man. And I'm going to conquer it.

Scott Benner 1:16:31
I always think of it this way, I think we're going to figure it out. And I genuinely believe we're going to, but if we don't, whatever that whatever it is. I guarantee you that my last breath, I'll be swinging. Like I'm not, I am not giving up until the very, like, you're gonna have to take me out of this for me to give up. Yeah, you know, so I am definitely going down swinging, that's for sure.

Utah Jen 1:16:54
Yep. Arden's got a good team on her side. And you will, you won't, you won't let things go, you're going to figure it out for her, and she's going to be better, and she's already better in the long run. And she's gonna be set up for a beautiful life. Well,

Scott Benner 1:17:09
I hope to, um, I hope to be able to report back those sorts of things. And you know, one positive thing from all this is that the endocrinologist that we found that's helping her with the thyroid stuff, even if the thyroid stuff doesn't end up being the entirety of the issue. I'm going to get her on the podcast, and she's going to talk about thyroid in a way that most people don't get to hear about this is going to be really valuable for you. And this wouldn't happen, I wouldn't have met her I wouldn't have been able to bring her on the show eventually. And you know, she asked that we have to wait, obviously until she's done treating Arden. But yeah. But after that happens, you know, we've met another person and we can spread good information to to more people. So

Utah Jen 1:17:47
yep. Because thyroid disease is a whole other ballgame that is very, very deep.

Scott Benner 1:17:51
Yeah. Yeah. It's not easy. That's for certain. All right, Jen, thank you very much for doing this. I'm so happy that you're in a better space. You know, yeah, it's been really cool to get to know you over these couple of years, then to bring it together with this episode. I've liked this so much. I'm putting this out very soon. Just saying Oh,

Utah Jen 1:18:08
thanks, Scott. And I, I have to say that the way that we treat our son in his diabetes is a lot. Not a lot, I would say 98% of what I've learned from you not Mar endocrinologists, because as you say, they, they keep them alive, right. And they don't care if they're sitting pretty at a 200. And so I have to give everything that we're doing to your advice. And I take that to Honest to God, the deepest parts of my heart for thank yous because it's, it's pretty amazing what you're doing. I feel

Scott Benner 1:18:43
like you're trying to make me cry, john.

Utah Jen 1:18:46
It's true, though, like you, the impact that you're doing for people all across the world is a big deal. And I can't my husband and I and my family can't thank you enough. So

Scott Benner 1:18:57
it is just so much. It is very much My pleasure. I mean that it's helping people it's helping me. Yes, just so you know, you know, every day I can't fix everything in my life for for my kids. And I hear about somebody like you or people listening or having more success makes everything feel better. You know?

Utah Jen 1:19:16
Yeah. So you're making a difference. And, you know, when you die. My grandpa always said this. My grandpa always said this, when you die, you want to know that? You know, it doesn't matter what you have, it doesn't matter what you have next to you as far as material things or how much money you have in the bank. It's what you've done in order to make a difference in people's lives. No, and you will literally I look at you and I say you know you're the type of man and your family is the type of family that is able to, to carry that and to show the impact that you've made on so many people's lives.

Scott Benner 1:19:50
This is very kind of you just say thank you. I thought you were just gonna say you're gonna come to my funeral, but never mind. I just want one person to show up at the end and be like hey, cuz you know, the people I grew up with, they're gonna be like that, guys. Like, what are we talking about right now? Why are people sad? I would need like, I need you tell Jen to stand up and be like, No, listen. I just need one of you. Y'all don't have to come just one of you, please.

Utah Jen 1:20:10
Because I'll be there. How's that? Don't make it anytime soon? No, no, I'm just

Scott Benner 1:20:14
saying, you know, some of those kids I went to high school with, they know me like 30 years ago, there'll be like, wait, the guy who made the dumb jokes. That's the guy you know. And I'm like,

Utah Jen 1:20:23
they know while they're working their nine to five you're changing lives.

Scott Benner 1:20:27
Now. You got to thank this microphone and technology, by the way, cuz seriously, I would be yelling out of window if it wasn't for the internet and, and how some of this stuff has become so available for people to talk to each other. It really is amazing.

Utah Jen 1:20:41
I have recommended your podcast I don't I can't even tell you how many people Thank you. I randomly working in the hospital and working with newly diagnosed type one diabetics. I'm like, you've got to let this the first thing I write down on their discharge paperwork.

Scott Benner 1:20:55
Oh, that's so cool. I really mean, and it's nice if you that you're going to go into the community and like it made me feel like recently you said like, I'm going to go work at this place. I thought, Oh, wow. Like something I said, might come out of Jen's mouth one day and help somebody

Utah Jen 1:21:10
like that. Are you kidding me and the interview that I had, I said I don't think of diabetes as a typical person who thinks of diabetes. And I used your words. I said I you have to be bold with insulin, and you can't be afraid of it. And they don't even diagnose it. Or they don't even prescribe insulin to their patients. Because they don't have the the employees and the medical professionals to follow up on it to see how it's working for them. So it's all oral meds are like Lantus. They don't do fast acting because of that. And I said, well, we're gonna we're gonna change lives. And literally, it's because of the way that you're helping me. Give a lot about it,

Scott Benner 1:21:53
Jen, I know you're tall but you're not allowed to people in the house. That's illegal. Just

Utah Jen 1:21:58
that's my dog. bazel is a French Bulldog, right?

Scott Benner 1:22:00
He's a mix, but he's got a lot of French in him.

Utah Jen 1:22:03
Okay, I have a French and an English. So that was my English.

Scott Benner 1:22:06
Well, you know what I'm gonna let you go. But as you're talking about sharing, then telling people about the podcast, it made me pull us up to look. And a second ago, we were 370 downloads away from 2 million and I refreshed it just now. And now we're 320 downloads away from 2 million so I really appreciate when people share the show. Because if this doesn't help anybody else, I just don't have the like, that's the one thing I can't do you know, is I can't go find people.

Utah Jen 1:22:37
Well, I'm telling you this you're gonna be a it's gonna be the first thing I'm telling you on this on this paperwork I give to patients and teach them.

Scott Benner 1:22:45
Thank you. I really appreciate that. I really

Utah Jen 1:22:47
well, I appreciate you. Alright, have a great day. Okay, Scott, take care.

Scott Benner 1:22:51
Yeah. Well, for someone who doesn't live anywhere near the ocean, Jen short can curse like a sailor catchy. Thanks so much to Jen for coming on the show and telling the story of both of her sons and her life being the caregiver of children. You know, with issues that are our daily. I really thought this was terrific. I really just did. The Who else? Oh, Dexcom. Thank you Dexcom, makers of the G six continuous glucose monitor, please go to dexcom.com Ford slash juice box to find out more. And if you want to no obligation demo of the Omni pod tubeless insulin pump sent right to your home, my omnipod.com Ford slash juice box. And if you want to do the podcast a favor, go into those show notes and click on my link. Can you do that and click like like or type it in the way I set it exactly. My omnipod.com forward slash juice box. And then dexcom.com forward slash juice box let the sponsors know you came from me. And that way they'll keep being sponsors and you'll keep getting a free podcast. Don't forget the giveaway lasts the entire month of August 2020. So go to Juicebox podcast.com. At the top of the page, you can click on the link that says to millions. And when you get there, it's easy to enter. There's nothing to do to enter. As a matter of fact, you can enter once a day every day in August of 2020 What can you win a Juicebox Podcast sweatshirt, some Omni pod t shirts, Lily's chocolate gift pack, a 30 minute consultation with Jenny Smith CDE a bunch of Dexcom swag, some touched by type one goodness, and anything else I can find a throw in here. And I think I'm trying to get you a meter from contour. I'm working on that. I'm not sure if that's like a thing you're allowed to give away or not. But I'm gonna find out. That's me. I'm out there swinging for you. Okay, check it out. Thank you for helping me celebrate the 2 million downloads of the podcast which actually happened yesterday. During that doctor's appointment that I mentioned for Arden's telehealth thing that you kind of heard in the in the episode I know this is crazy that there's an episode coming out the week. It's recorded. It's probably frying your mind. But while we were on that call with the doctor, when we got off, I refresh my screen. And we jumped right past 2 million. So I missed it, it's gonna take a screen grab of is a little excited. I don't know what I would do with the screen grab, then once I had it, I'd be like, Oh, look, I have a screen bad numbers, two, comma, a couple zeros, comma, more zeros. Not sure what I would have done with that. Nevertheless, enter the giveaway. Get the swag. If you're looking for it, check out you know, maybe a win Jenny two. It'd be goodness for you. You know what I mean? Just help me celebrate the 2 million. I really appreciate. Every time you share the show with someone else, it grows the way it does, completely because of you. And you know, I've never done this before. But if I hit refresh now, so I checked how many downloads the podcast had, like 15 minutes ago. It has 123 more downloads than it did 15 minutes ago. Isn't that cool? is a very exciting. That's you guys. That's you finding the show, thinking it's great telling somebody else about it. That's you leaving great reviews on Apple podcasts so that when people get on there, they can say, Hey, I think this is a podcast I should check out. So whatever you can do to help spread the word. Thank you. I hope the giveaway is in some way. You know, an actual Thank you. But I mean, only one of you is gonna win it. So I mean, for the rest of you just know that I wanted to send that to everyone. I just thought What am I gonna do? If you tell somebody do about the show constantly. And you've already left a great review, and you're still thinking like, how can I help the podcast? start picking up random strangers iPhones, opening the podcast app and subscribing to the show? That's one idea. Thank you so much for listening to the Juicebox Podcast, tell a friend hit subscribe. Are you not subscribing subscribing your app, do it now. Get in there. Push the button, push it, push it. I'm being serious for a second. If you're the person who listens to the end of an hour and a half long podcast episode and you're not subscribed to an app. You're killing me. You understand? You're it's as if you're standing on my chest and jumping up and down on my heart. I just I would just, it would break my heart to know that you are not subscribed in an app.

I'm thinking about it now. Yeah, it's making me nauseous. You have to subscribe me You love the show. You got to subscribe. You don't love it. Don't subscribe. I hear what you're saying. But if you love it, I mean, it's an hour and a half in I'm babbling away at this point, push subscribe. Do you know if all of you who are just listening like I'll just download it once in a while, or I'll listen on the web. If you all just hit subscribe right now on a podcast app. Boom. We blow up like crazy on Apple podcasts jump right to the top. I mean, we're like around number 20. In our I'm now saying us like there's someone else. It's just me Just so you know. I'm like the entire podcast but but but the point is, is we we I think I mean me in the podcast. Why don't we just say the podcast the podcast would jump up to the top of its Oh, how exciting would that be if it jumped right up to the top of its little thing there where it's put in with other podcasts that are in the health and fitness category in medicine? Hmm. I'll tell you what, here's something I should do. Since I'm babbling on, like a lunatic. Let me tell you something here. I mean, throw some thank yous around. Here is a list of charts that we are currently charting on. Again, I said we makes me feel strange. I meant the podcast. Here we go. You ready? Thank you. United States of America for consistently putting me in the top 25 in my category. Thank you to Great Britain. for having me in the top 150 Canada seriously, top 15 way to be Australia. You're falling behind Canada here. I'm 117 over there. Germany to 14 I appreciate it Sweden. I don't know like it seems to be dropping in Sweden new Swedish people need to download some more episodes. Number 50 in Russia number 194. Norway number 29 excuse me number 29 in Norway actually getting in the in the parent. I see or 194 in the parental category number 29 in the sub category in Norway. Yo what's up Norway? Are you getting a shout for that baby? Ireland number 60 Thank you Denmark number 72 Thank you, the Netherlands 133 eu Netherlands is another one of those parent things in the parent category were 133 in the medicine category number four. Yo what's up Netherlands? New Zealand just felt 10 New Zealand at number 37 don't love that New Zealand get on it. download some episodes. Switzerland number 90, Austria 69 South Africa Belgium Singapore, Israel, Finland, the United Arab Emirates, Egypt and Qatar. I know Qatar you're like damn, did he say that right? Even though you put a queue at the beginning your name, I said Qatar the way I was supposed to. Thank you so much all of you all over the world for listening and for sharing. Do it more, more sharing, more listening, more subscribing. There can't possibly be anyone left listening at this point. I'm I'm now 100% sure I'm talking to myself. Hey, so it is 90 minutes since I recorded that last sentence. And I got motivated to do something that Non Us listeners have been asking for for a long time, which is to make an easy conversion chart. So when I say something like Arden's blood sugar was 120 You don't have to go I don't know what that means. You can just look at the chart and see that means 6.7. Anyway, Juicebox podcast.com, forward slash conversion. And I'm looking into putting a calculator on there as well. But for now, it's just the chart Juicebox podcast.com, forward slash conversion. I'm really sorry to everyone overseas, that it took me so long to do this. I have heard you're just countless, countless times that you've asked and I just haven't had time until right now. It was thanking everybody from overseas and I'm like, you know what, what am I doing here? I got to make this chart. I hope you like it. I'll talk to you next time.

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Scott Benner 8/10/20 Scott Benner 8/10/20

#366 Kelly with a Y

Kelly is a D-Mom of a three year old

Cory is a T1D mom and Justin is her grown son living with type 1 diabetes.

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Scott Benner 0:02
Today's show is sponsored by touched by type one, and the Contour Next One blood glucose meter. Touched by type one is an organization that has programs and services for those living with the daily reality of type one diabetes. They offer a supportive community. And many, many interactive programs, and creative resources that are designed to empower people to thrive with type one. Check them out at touched by type one.org, you can take one simple step to upgrade your diabetes care, this is going to be incredibly easy for you to do go to Contour Next one.com Ford slash juice box to check out the Contour Next One blood glucose meter. This is the same meter that my daughter has been using for a while now. And it is absolutely the most accurate, easy to transport easy to use bright lighted good test strip blood glucose meter that I've ever held my hand Contour Next one.com forward slash juicebox. It's even possible that what you're paying for your meter and test strips right now through your insurance company so subsidized by your insurance company that could actually be more expensive than just the cash price of the Contour Next One blood glucose meter. And that in itself is worth checking into Contour Next one.com forward slash juice box. There are links to the advertisers right there in the show notes of your podcast player, or they're available at Juicebox podcast.com. But if you can just remember, Contour Next one.com forward slash juice box and touched by type one.org. Well, then you've got all you need.

Hello, everybody. Welcome to Episode 366 of the Juicebox Podcast. This episode is just incredibly conversational. And so it's hard for me to even pick out something to say Oh, it's about this because it's just a good conversation. There's a D mom named Kelly, and she has a child with Type One Diabetes. It's just a good conversation. And I think you're gonna really love it. So this is me and Kelly. Now my Kelly different Kelly. Kelly's gonna have a baby. At the time of this recording. She knew the sex of the baby but hadn't told her husband I think she tells me at the end, what kind of a baby it's gonna be you know, there's only two kinds, right? You could have like a boy baby or a girl baby, they come out either or usually. And she'll tell you which one. And that's pretty much it. We'll have a really nice conversation about living with Type One Diabetes. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan for becoming bold with insulin. There is still time to enter the big giveaway that is celebrating 2 million downloads of the Juicebox Podcast go to Juicebox Podcast calm at the top of the screen. I think something there says 2 million you click on that. It's easy to enter. There's nothing for you to do. And you can enter once a day through the entirety of August 2020. Check out the gifts that I've been able to pull together for this extravaganza and see if you don't want to throw in your you know your info there and try to win. I don't keep your email address from this. Nothing. There's nothing that comes to this for me, you just want to you is gonna win the prizes. That's it. I'm just trying to celebrate very happy you guys share the show. I mean, 2 million downloads is a heck of a lot of downloads for a type one diabetes podcast. So my respect, thank you very much. And hope you win. Good luck. All right, here's Kelly. I have to admit that I don't remember why we said you were going to be on the podcast. So this is perfect for me.

Kelly 3:55
Because honestly, neither do I. I think I just like I had started listening. And I was like, Oh, cool. You just talk to random people. Like I'm a random person. Let's do this.

Scott Benner 4:04
I'm a random person.

Kelly 4:05
Yeah, but really, my biggest thing is like my daughter was 22 months at diagnosis. So you know, I feel like we have that in common because obviously it was really little but I hear from a lot of people online. They're like, Oh my god, I don't know how parents of toddlers do it. It's like, well, you do. You don't have a choice. Yeah.

Scott Benner 4:22
Because there's no receipt that allows you to take a child back to the store.

Kelly 4:25
had a question? I know obviously, like, I'm not Kevin Sayer or like someone super important. So this isn't going up like tomorrow. But do you have any idea how long it'll be before it airs?

Scott Benner 4:36
Did you enjoy the one yesterday with Megan Did you hear that?

Kelly 4:39
I'm like halfway through it. I work from home all the time now. So I never have time to like drive anywhere and listen to it because I just listened to my car.

Scott Benner 4:47
I recorded that one in April.

Kelly 4:49
Okay, so it'll be a while. Well, and I only asked because I am six months pregnant right now and I know what we're having. My husband does not so I don't want him to like find out on your podcast but it sounds like all have had the baby before. This is great before anything happened by the way.

Scott Benner 5:07
This is great. Oh, that's wonderful. Yeah, I will not put it out before you have your baby. But I am trying to do fewer. My wife would be so proud of me just now that I didn't say less fewer recordings in the beginning of the the year right here, because I'm a little too far recorded ahead at this point. Like I have to admit when I put Baggins out yesterday, I thought it should not be nine months, like to get to get her recording out. So um, yeah, trying to use some

Kelly 5:34
things come up, though, like, you know, the Dexcom issue that happened over Thanksgiving. Like, that's kind of something you need to put out there. And

Scott Benner 5:43
thank you for understanding Kelly. I appreciate this. Yeah, totally. You're making me uncomfortable because women named Kelly are not that frequently nice to me.

Kelly 5:52
I'm sure she loves you. She stuck around.

Scott Benner 5:55
I mean, where's she gonna go? The kids look, or your podcast

Kelly 5:57
is finally making some money, right?

Scott Benner 6:00
She's like, No, I can't go now. The guy's finally bringing in a couple of bucks right now. So anyway, why don't we just do this? Everyone? This is Kelly. With Kelly's daughter, tell me your daughter's name.

Unknown Speaker 6:15
Alexis

Scott Benner 6:16
was diagnosed when she was 22 months old. How old? is she now?

Kelly 6:20
She turned three yesterday. Oh,

Scott Benner 6:23
so we're, um, a year? A little over a year? You're two months?

Kelly 6:27
Yeah, a year in two months. Exactly. And

Scott Benner 6:29
in the middle of figuring out diabetes. I'm starting to feel like you didn't get pregnant on purpose with this baby.

Kelly 6:37
Oddly enough, we were like about to start trying like the month that she was diagnosed. And then obviously stress just did its thing and kept that away. But yeah, we kind of got a better handle on things and figured Yeah, well keep going with this. Right. But this is the last baby we're gonna be having for sure.

Scott Benner 6:56
One that year. So you're six months pregnant. Now the one you're pregnant with right now is how many babies for you?

Kelly 7:01
It'll be baby two. And final?

Scott Benner 7:04
Yes. I feel like two is a nice number. Yes, it is. Really as as last night Arden was you know, doing her homework? And I'm like, Oh my gosh, if there was another kid still that was younger, like, what would we do? Yeah, you don't even like like, I'm right now looking at her at 930 at night thinking. Just go to bed. I don't care what grade you get. Please, I'm tired.

Kelly 7:28
Like, yeah, we're still a ways off from like dealing with school and stuff. But it is like it's kind of nerve wracking, like, purposefully bringing another child into the world after you already have a type one diagnosis. You know, like, I know a lot of people that have multiple children, but you know, one or even two or three of them are diagnosed like later, you've already got the kids, you know, but we're like, we had type one with our first kid. And now we're still consciously doing it again.

Scott Benner 7:57
Yeah, that's what I was gonna say Is that you? You may you you didn't get like I have six kids. And now one of them has diabetes. You're like, I'm gonna make another one on purpose now.

Kelly 8:06
Yeah. And hope he doesn't have type one. But you know, if it does, then we know what to do, I guess.

Scott Benner 8:13
Yeah, no, I hear you. I am. I wonder if now that we're done joking around about how many children? I wonder if I was the person I am today. If I was that person, 10 years ago, I wonder if we would have had a third child? Sometimes. So yeah, that person then couldn't have imagined being not completely dumbfounded. 24 hours a day by diabetes, you know? Oh, yeah. I just felt like I was gonna be like that forever.

Kelly 8:42
Yeah, I go see my ob. And she's like, Oh, where are you getting enough sleep? I'm like, Well, I have a three year old who's diabetic. So No, I don't. But thanks.

Scott Benner 8:50
And even if you just had a three year old, you probably wouldn't be.

Kelly 8:52
Right. Exactly.

Scott Benner 8:54
All right here. Okay. So listen, I just saw you put a photo of your daughter up in the Facebook group the other day, and she was just absolutely adorable. Was that for a birthday? Or who we

Kelly 9:08
thought was her third birthday yesterday?

Scott Benner 9:11
Oh, yesterday?

Unknown Speaker 9:13
Yeah. Very nice.

Scott Benner 9:16
might be the episode title. Happy birthday. How is it? Having a three year old with diabetes? What's her level of understanding of what's happening with her life? day to day?

Kelly 9:30
Um, I don't know. Like she doesn't know a difference because we've been at it a little over a year now. And this is just like, this is her but she she understands you know, when we say it's time for a sensor change for Dexcom or time for a site change for her pump. You know, she she has the anxiety around it because obviously I imagine the pump side change hurts. So she doesn't love it. But you know, she understands she knows when we tell her like Hey, you got to sit Still, so we can dose you. She'll stand still. So let us do her thing with her pump. And she doesn't, you know, she doesn't mess with it herself. We have the T slim, so we keep it in a little fanny pack. Yeah. So just sits on her back all day and night. And, you know, she just kind of leaves it alone. So

Scott Benner 10:17
she doesn't pull out it. I wonder if it's a boy or girl

Unknown Speaker 10:19
thing

Scott Benner 10:20
cuz I was just talking to somebody the days like my son won't leave stuff alone. It's like, I wonder if that's how bad I'm sure there's girls who don't like it either.

Kelly 10:29
Yeah, it's either that or just like, like I said, she was so little, like, we got Dexcom, about seven weeks after diagnosis. So she's actually had that just about a full year at this point. And I mean, at two years old, you don't know a difference. So I guess either. Yeah, the kids are gonna pull at it because like, this is not natural. Or it's just a part of them. Now. She just leaves it alone.

Scott Benner 10:52
Well, how did you figure out that, um, that she had diabetes? Did you figure it out? or was she diagnosed through now?

Kelly 11:01
Yeah, yeah. I mean, it was a totally typical Google symptoms of everything. You know, with the difference of a two year old is not going to tell you they feel dizzy, or they don't feel good or a stomach hurts or something. So, you know, it was probably it. Well, it was November 6, was when she was diagnosed. So we're like a week past Halloween. And of course, it was the first Halloween that she was like running around and actually trick or treating and getting the eat most of the candy and have fun with it and stuff. And I looking back on photos now I can tell she was super skinny. But you know, you don't see them losing weight right in front of your eyes when you see him every day. So she looking back. She definitely looks sick. But she seemed to feel fine. And I'm thinking cool. I got the only two year old in the world who's like, eating anything and everything we put in front of her like we're doing something right. But no, she was just starving. So yeah, she was eating a lot. The biggest thing was like she would pee through her diapers like, even the overnight ones that are meant fairly crazy thickness and stuff like nothing was stopping that She'd wake up in the middle of a two hour nap or the middle of the night and just yell for water. Which you know, we live in Arizona, it's hot here. I figure Okay, like she just is thirsty. And I didn't know anything about it. So I didn't even think to Google the symptoms. I took her pediatrician at one point thinking it was a UTI. And the nurse practitioner who I don't see anymore, had asked briefly, does diabetes run in your family? Nothing else around that? And I'm like, No, that's a weird question. And that was it like no finger poke no further why she was asking that just that was it. And they gave her some, I think an antibiotic or something saying Well, I don't think it's a UTI. But if it is, so clear it up. And a week later, she's doing the heavy breathing like super lethargic, just not wanting to get out of bed, didn't eat anything that day. took her to the babysitter anyways, because of course we all had to go to work. And then by like five o'clock that night, I'm taking her to urgent care because something weird going on. And yeah, I mean, after 10 minutes in urgent care, the doctor is like, Okay, well, we're gonna, we're gonna do all these tests to rule different things out. And of course, she starts with a heel stick, because I think she knew and just didn't want to freak me out. But get that number back was like 480 something which I'm like, cool, high score. I don't know what that means.

Scott Benner 13:40
Finally, and she's like,

Kelly 13:42
yeah, she's like, well, it really shouldn't be over like 150 considering she hasn't eaten anything all day, like, Oh, okay. So after a couple of minutes of crying in the doctor's office at urgent care, she's like, okay, now you need to pull it together and you need to take her straight to the Children's Hospital. Don't stop for anything, just go like, we'll call ahead and let them know. And so yeah, we took her in and two days in the PICU and two days on the general floor, we're set home with our new life.

Scott Benner 14:12
Hey, listen, I'm just realizing something. Do you spell your name one way and pronounce it a different way? No, no. Do you know your Facebook say fit page says pronounces name. Ke Li.

Kelly 14:26
Oh, really? Yeah, I had no idea.

Scott Benner 14:28
That's weird. Okay, fix that. We'll do that. I'm like, I'm like here's what I was thinking when it popped up in front of me. You're finishing up your story. And I'm just checking because your kid really is adorable. So I'm going to look at a picture like this right while you're talking and and I'm looking over to says pronounce his name Keeley. And I was like, am I talking to a lunatic who spells their name Kelly and says Keeley and I should know that if I am absolutely

Kelly 14:53
Kelly. Yeah, that's how your wife spells it too. Right Kate? yelloweye

Scott Benner 14:57
Yeah, I believe there's like two ways to Well, Kelly Yeah, there's

Kelly 15:01
Oh, there's multiples fully. Here's

Scott Benner 15:04
why. And I and I is crazy. All right.

Kelly 15:07
Yeah, I can just I too, which is kind of cool. Oh,

Scott Benner 15:10
my gosh, yeah, Bedlam. But yes, but Okay, so I just want to make sure you went nuts. And now that I more comfortable that you're not. I want to know a little more about your experience being diagnosed because, and this is tough, because, you know, I think at this point, the podcast is well listened to enough around the country, and other places where if you say something off color about your children's hospital, they might hear. So right. I don't want you to do that. But I've been to Arizona to talk. Right. And I know the difference between people complaining to complain, like, you know, jumping on the internet to say something they don't like, because they want to get it out, or saying something when you bump into something and hearing very similar stories over and over again, that seemed like they have more than a grain of truth to them. Is there an issue with how you guys are? assisted? Like, what? Or did you feel good about? What you got from the hospital when you were leaving? And how has it proven out over the last year?

Kelly 16:20
Um, it's weird, I guess, because I mean, I, we really only have two children's hospitals here. So you're going to one or the other. Most of the time you start by whatever is closest to you. And then you continue with, obviously what insurance covers. So it's not like we've had the opportunity to like, go to different doctors or anything, but we love ours, like we met him through and I believe you know, him, he was on the panel with you. But we, we went to, to the local Children's Hospital. And I mean, they were great. Like we walked in, and I say I don't think they call the head because she gave me a paper like, you know, you leave with the discharge paper from urgent care. And it said, possible DK on it, which I, I don't know how I had the willpower, but I did not Google that on the way to the hospital. Like and thank God I do. It is terrifying. But we walked in and you know, we wait behind two or three other people who are there with their kid, you know, with the flu or something. It's November, so flu season. And I walked to the front and we go to register. And she's like, Well, you know, what are we doing for you? Like, oh, Urgent Care said to say possible DK and like, I swear, five nurses heads just whipped around. They're like, How old is she? And I said, almost two, and they're like, Oh, my God, that's too young. And I have never seen them move so fast. Like, we cut every line, they they moved really quickly. So the hospital itself did a phenomenal job. And you know, explaining things as you go. And then we didn't actually meet the endo until the next day, because by the time we got to room, it's like two o'clock in the morning. And so we met everyone, and you know, they're all great. And they really do explain things as best as they can. And it's kind of frustrating now, because looking back a year later, you're like, Well, why don't they tell you this? And it would make so much more sense if they explained it this way. But it's like you've said before, like they're giving you don't die rules. They can't explain the ins and outs of this. And I think one of the nurses we talked to actually set it really well is that there is there's so much of it. That's an art. Like it's not just a science, which really drove my husband crazy at first because he's like, Well, no, it is a science like this is your blood sugar. This is how it gets there. But now we realize like that's not true. Yes, there's a science to it. But so much of it is your diabetes may vary. Like you have to learn what works for your kid. And, you know, just after listening to the podcast for a year and talking to people and being around others, we've learned, you know, oh, yeah, elevation makes our kid drop some people that makes them go high. Those are just things that the hospital can't tell you because they don't know.

Scott Benner 19:08
Yeah, so this week, this past weekend, I spoke at a hospital around here in a lovely group of people. And it's the second time I've been asked to talk to them. So I felt this, I felt a little bit of pressure. Like I'm like I'm back, there's gonna be some doubling of people. And actually, it was nice here, probably about 50 people there. And, you know, there was only maybe eight or 10 who had been there the year before. So it wasn't you know, it wasn't like I was saying the same thing twice. And anyone who knows me would know that I don't actually have the ability to repeat something. So not that well thought out. I and so I you know, I go in and do my thing. We started a Gosh, like three o'clock maybe. And I walked out and got in my car at 620. So I'd spoken for three solid hours and after As I was leaving, I thought, Oh, I should have said this, you know, and I really should have made this point a little, like stronger. And and I just as I was walking out of the building, I kept thinking of things like, Oh, I wish I would have been more clear about this or made this point better, or something, or I hope they understand this. Because the truth is, I could have probably talked for another three hours. And now everything that you know, in my heart, I would want them to know, as they were leaving. So I don't even know how a doctor in anyone in 15 minutes would really put you on the path. I mean, without the because they're trained the way they're trained. And they come into practice. And this is their life, they see you 1520 minutes move on. Yes, some people get a little more my doctors not as pushy, like you'll sometimes just spend a half an hour in there. And that's even dumb luck, you know, that if you get if you're at a place that can go that long. And I think that I think that if they had the opportunity to speak long form over and over again, like the podcast is, then they'd be able to keep boiling down the things. That's why I feel like the podcast is valuable, because there's sort of these big ideas smashed down into a couple of words. And if you listen long enough, those words, they paint a larger picture in your head when you think of them, right. Like, you know, I was saying to the people the other day, I'm like, at some point, the words like trust that what you know is going to happen will happen. It's going to mean so much to you. Yeah, but in this moment, as I say to you, you're just like, wait, that's like, sideways talk, there was this one, this delightful. I every time I say this phrase, in public, I think someone's gonna laugh, and no one ever does. And this past weekend, a woman cracked up and she made me laugh. Because I'll tell people, as I'm beginning to talk about pumping and nudging and not letting blood sugars kind of get out of line too much. I say, listen, the truth is, if you don't get high, you won't get high. And which doesn't make any sense. You know, at first, that's a way to like, pull people's thoughts together, make sure everybody's focusing and then I started talking about not letting blood sugars, you know, like, don't let them run, you know what I mean? Keep them on a leash, stop them before they get started, whatever you want to think about. But she broke down laughing and I was like, I walked all the way out into the crowd door. And I was like, I've been waiting years for someone to point out how ridiculous that is. Thank

Unknown Speaker 22:23
you.

Scott Benner 22:26
But she's like, what does that mean? It doesn't mean anything. I was like, Oh, well, in a minute, let me tell a story, you know, and then I sort of build a narrative around it. And then kind of brought it back to the idea again, but that's just, it's very difficult to do, you know, in a quick setting. But you feel good about it. Your you like what, what the hospital has been teaching you at the pace they've been teaching you? Are you able to like, see, like, what the division of labor is, like, How much have you gone out and learned on your own and brought back to the process? What do you think the split is?

Kelly 22:59
Oh, like most of it? We like, I mean, like I said, They taught us to don't die rules, we go home. You know, we're MDI, initially, they did actually bring up the dexcom g six, when we were in the hospital. So the nurse practitioner who is actually who we see more often we only see the end, like once a year. And she had brought it up and was like, you know, here's some information about it, look into it, see if your insurance covers it, like this is going to be amazing, especially for a kid this young. You know, you just you need to know what's happening. And I literally refuse to go back to work after her diagnosis until we had Dexcom. Like, I was not comfortable leaving her alone. I wanted to know what was going on at all times. Like I I just couldn't do it. So we I think about seven weeks later is when we got it. And we had some actual issues initially, too, because our insurance was hesitant to get us on the Dexcom. Because Dexcom specifically is like FDA approved for two years and up and she wasn't to yet. like are you kidding me? We are seven weeks away from her birthday. Like let's just do this. This is clearly a medical need. But eventually they come through and she turns to when we get it pretty quickly after that. So that part was good. I mean, I don't feel like we would have known about it otherwise, because we didn't start getting involved in like the internet community for a little while after that. I mean, we actually we joined some local type one parents groups, while we were in the hospital, you know, there's always a case of Oh, someone knows someone and then gets you involved in the group. So that happened before we even went home. But other than that, that was just kind of like the overwhelmingness of everyone, you know, reaching out and oh, here's the hugs and prayers and you know if you have any questions, whatever. But yeah, the hospitals been great. I mean, we we actually had a hospital stay shortly after that, like, right After we got the ducks calm, she ended up with the flu and strep throat in the same week. And I just especially being MDI to later, I can only give this 25 pound kid, half a unit, which is going to drop her like crazy. She's not eating anything because she feels like crap. So, you know, what am I going to do? So we ended up in the hospital, that was actually a longer hospital stay to get over the viruses than the initial diagnosis. So in two months, we spent almost two weeks in the hospital, which was super fun. But after that, I mean, knock on wood. We've been good the last year, you know, we've been managing other sicknesses and stuff. But obviously the pump makes that a lot easier to when you can do these micro doses and stuff.

Scott Benner 25:45
This weekend after the talk, and she was standing there with her daughter, and saying, like, Oh, this really made me feel more comfortable. I appreciate it. And I have been wondering, and she started talking about, you know, the her child was on a pump, but not a glucose monitor. And they're trying to get one of their insurance companies messing around with him, said the kids agency was too good. But then you look at the kids numbers, the kids they want sees lower because she's having these crazy lows. You know, like, you know, you know, the insurance company knows that they're just I said, Look, they're just putting you off, you got to keep going back and like the you know, the CD will be able to help you get a letter to explain everything, you'll be able to get through it and get a glucose monitor, but she was talking about it. And while it took me right back to an Arden was younger, like the idea of like, you know, I put her to a bed and I tested her and she was okay. And then I, you know, I wake myself up a couple times at night that has then it just this last feeling that you don't really know what's happening.

Kelly 26:42
Yeah, you think you're rocking it and find out? Not

Unknown Speaker 26:45
so much you're not? Yeah,

Scott Benner 26:46
well, you're having these outcomes. That are the ghosts, right? They don't they're not really true. Yeah, it's a way I talked about setting baselines on a lot. I tell people look, until you get your bazel. Right. Nothing else you're seeing is real. Yeah, you know, like, you don't really know what your Pre-Bolus time is, you don't really know if your insulin to carb ratio is right, or your action time is set up correctly, all these other things that you really need to understand about how the insulin works. Because if the bazel is too strong, you may be bolusing. You know, your ratio might be often below but it won't matter because you've got way too much. bazel. And, you know, these just these ghosts, you have to first the baseline has to get set before you know what you're seeing. And she she's like, she said, I don't know what to think like, I test her and I see a number and I don't know what that means. You know, like, like, it seems okay for the moment. But what does it mean after that? And yeah, I was like, Yeah, I don't know. But you just took me into a, she put me right into a time machine and took me back to a time where I felt absolutely freaked out most of my life. You know what I mean? So

Kelly 27:54
Oh, yeah. Yeah, I can't imagine like, some of you do parents with the older kids who did it, you know, with a toddler without having a dance calm or something like that, like that is terrifying. You just didn't sleep the first like five years of her life,

Scott Benner 28:09
sleeping, and then it was all just sort of like, I put the insulin in here. We'll wait this amount of time we'll check again. Normally, she was too high, then yeah, frozen in fear, because you kept thinking like, well should probably come back down. I did what the doctor told me. And then you test again, she was and then you realize you had to give her insulin, and now all of a sudden, you are actually stalking insulin. Because Yeah, I didn't know what the hell you're talking about, you know, and it's just a very, it's a very blind way to do it. And it's not not doable. Like, don't get me wrong about that, like you could, you know, when I said to her, I was like, Well, you know, the thing you can do in the meantime, is just test like a lunatic. To give yourself sort of this, like, our to our CGM graph, just I said, test every hour, and make a.on a graph. And then, you know, you can just sort of imagine where you were in between, if you're at five at 7am. And you're 110 at, you know, at 8am. I don't think you went to 150 and came back to 110. Like, there's probably somewhere in there is the path your blood sugar took take, you can cheat and give yourself a little bit of an idea. And she's like, maybe I'll try that. And I was like, that's a good idea. I'm like, I might say that on a podcast. And then I just stuck it in here. So I'm just like, here. I wonder how can you tell a story that will put this

Kelly 29:31
stick? No, that's fine. Yeah. Yeah, I mean, are we we're doing the whole you know, talking to the CDs daily, emailing the blood sugars, daily, all of that and then just like literally, I got the Dexcom and very shortly after that, like probably within the same month, is when we started listening to your podcast because we we started listening to it in January, so about two months in we had just gotten ducks calm. And then I think you were here for the the type one nation summit. In February, and like, honestly, you're the reason we went like cuz I'm like, Oh, hey, that's that guy listen to on the podcast, we should go got my husband to listen to a couple episodes. And oddly and like he actually grasp everything so much faster than I did. Like he's just a very analytical person and everything that you said made sense. Whereas I was like, Well, yeah, but the doctor said this and he's like, but it's not working. So

Scott Benner 30:25
anytime you just walk past it every setback?

Kelly 30:27
Yeah. And I think it is, like you've said before, I think people just we grew up our whole lives myths, oh, well follow the doctor's orders. But this is not a disease that can be managed only by following doctor's orders. Like, obviously, they have your best interest at heart. But at the end of the day, yeah, you're seeing maybe an hour every year, like, they're not living with you. So and our CDs were great. And our nurse practitioner, the endo, they're amazing. Like, they let us do our thing. They basically told us from our very first visit, we dropped her a one c like significantly from diagnosis to the first three month appointment. They're like, Wow, you guys really seem to have a handle on this. And we did tell them about the podcast and like, yeah, this is how it's kind of presented. And it makes sense. They're like, well, cool, keep doing what you're doing. If you have questions, you know, reach out to even now, you know, we had an endo appointment in November and Godrej, one c back and it had gone up a little from where it was, but still in a good range. And she's like, yeah, you know, maybe these are some of the changes I'd make. These are the most recent graphs I'm seeing on the pump that's, you know, showing something off. We'll try this. And then she's like, hey, fee was just just approved for pump use, you know, is that something you guys would be interested in? Like, yeah, sure, we'll be the guinea pigs. So, you know, they've used it with other pediatrics, but not someone as young as her. And they're just like, well, you guys have a good grasp on it. So if you want to try it, you know, I trust that you guys, you know, know what you're doing, and we'll stop it if need be, and go back to him a log or whatever. So that's working out, you know, it's just, the whole thing is, it's a lot. But once you kind of know what you're doing, which is weird to say, because people ask like, Oh, you know, how's that diabetes thing going? You have it under control? No. Yeah. Like, there is no control. But she is alive and well. And we're not pulling our hair out every day. So some days are better than others.

Scott Benner 32:24
Isn't it like you lost your dog? They're like, Kelly, do you find your dog? Like, yeah, we found it. Great. Oh, that's great. And that's the end of the day want there to be a finite answer to what you're saying?

Kelly 32:33
Exactly. Like, no, this is something I'm going to stress about every day of my life, but it is what it is. You move on. You won't though.

Scott Benner 32:40
I know it feels like that now, but you really want

Kelly 32:43
it. Yeah, I'm just terrified for the, the puberty years. Because that's the only thing that I see online that people are like, Oh, the only thing worse than dealing with a toddler with type one is dealing with a hormonal teenager.

Scott Benner 32:57
Let me see if this makes you feel better. Okay, so I'm just jumping back here to 3am. So it is noon here right now. Arden's blood sugar 3am was 110. At 4am, it was at nine, at 5am. It was 79 6am. It was 70 7am. It was 76 and 71. And at 930 9710 4184. And it's 91. Right now, so and Arden. I look, I know, one day, she's gonna like I'll be dead, right? But she'll go back and listen to this podcast. She's gonna be like, you know, I think the thing my father talked about the most on that podcast was my period. And right now Arden has her period. So it's not not doable. You know, I mean, it just really is an abstract idea. With a concrete answer, which is, your body has a need, you fill the need, you know, it needs a certain amount of insulin you put that insulin in,

Kelly 34:12
and not being afraid of doing it, like you know, it needs to be done. So just pull the trigger and do it. The other day, we had a site issue, which we rarely get with the sites that we use, because it's one of those like the 90 degree metal ones, like it looks like a thumbtack, but they really don't have sight issues because there is no canula or anything like that. But I think it was a case of like the the adhesive had kind of pulled up a little and I just don't think the needle was in far enough. And she's going up going up. She had eaten so I'm like, Okay, this is kind of a strange high, but whatever. She has high on Dexcom and I'm like, Oh my god, what is going on? And I told my husband, he's like, well pull the site give her an injection. But I had just pushed like two units into her pump. Like Well, I don't Know how much of that she got like, I'm scared to give her another whole unit via injection. And he's like, so what do it and we'll have a juice box like, we need to do this

Unknown Speaker 35:08
oh and turn up. That's Yeah, no, he's

Kelly 35:11
he is great at doing this stuff and he just like you know it needs to get done so we give her the injection, which she hates. I mean we come at her with a syringe now and she's been on the pump so long. She's like, get that thing away from me. But you know, she gets the shot and within 10 minutes, she's backed down, you know, 380 200 like we were having 60 point drops in five minutes. I'm like, Oh, crap, maybe we should get some juice go in now. And yeah, we actually we nailed a she had like half a juice box, and I think a couple pieces of fruit snacks or something. And like she rounded out at 97 within 30 minutes, like it was insane how quickly it worked.

Scott Benner 35:48
So by the way, Arden just texted me and she's like, it's lunchtime, and I said, Are you hungry? And she said, not really. My stomach hurts. And I said, Oh, wow. I said, Okay, well, let's so I'm thinking about our launch, right? There's stuff in there. She's not going to eat if she's not feeling well. But there's two chocolate chip cookies in there. And there's a bagel and popcorn and all the carbs. grapes and cherries today. I tasted the other day. I was like mom bought you cherries out of season. I don't love you enough for that. They're very expensive out of season. Seriously. Yeah, I was like she obviously either a does not care about our money or be really loves you more than I do. Because I would not have done that. And, and so I'm joking with her. She's gotten that. So what I just told her was, look, let's just do 40 carbs for now. Right? Because there's

Unknown Speaker 36:46
chumps, sorry. I'm laughing at what she said.

Scott Benner 36:50
She came from gym and she's like, I just did yoga. And that did not help out my stomach.

Unknown Speaker 36:56
Oh, yeah.

Scott Benner 36:58
So So I said, like, Look, let's just do there's probably 80 or carbs in that launch. Now my expectation, by the way, said she'll never eat the whole thing. Like Arden's not a lunch finisher, completely. Like I sent her way more food, people are probably like, wow, that kid eats all that food. I send her more food that she's going to eat. I don't expect her to eat the entire half of the bagel. I don't expect all of the grapes like you know, I just I have this mount of insulin in my head that she generally needs.

Kelly 37:26
Yeah, and she has options too.

Scott Benner 37:28
Yeah, right, right. And then she can kind of eat what she wants, and it's not too bad. So basically, we're gonna just cover 40 carbs, which in my mind, is the two chocolate chip cookies, some of the grapes, a couple of the cherries, and maybe a bite or two of the bagel. And then so I just said to her, I'm like, Look, just, you know, let's do 40 carbs right now. And then send me a text and tell me what you eat. And if it ends up being more, we'll do more. And if she gets a little high over that, whatever, you know, it's you know, they're trying to stay fluid with it and everything like that, but I'm not gonna roll through and be like, do 80 carbs. And you know, and then have her come back and say, I didn't eat anything. Plus, I know. Yeah, you know, plus yesterday. I remember what I took out of her lunch bag at the end of the day that she didn't eat. So kind of doing the math on that in my head. And this seems like a nice centerpiece. Plus, you might start eating and feel better. PS now on looking. It says that the yoga was painful for everyone, not just her. So this might not be about her period. This might be about a bunch of out of shape girls, who just did downward dog for the first time. A bunch of Netflix girls, that's that's, that's what they are. But anyway, yeah, that's how we're gonna do this. And she'll you know, she'll text me a little while and say, I didn't need as much for this is what I ate. And we'll just adjust off of that.

Unknown Speaker 38:47
Yeah.

Scott Benner 38:48
But with a little kid, it is a little different, isn't it? You know? Yeah. How is she with eating? This is Alexis finisher you give her?

Kelly 38:56
Um, no. I mean, sometimes it depends, like we've gotten a lot better about not letting her snack as much so that when it is mealtime, she's actually hungry enough to eat it. And that's made dosing a lot easier. Because I mean, the hardest part is just when they're constantly grazing. And I'm like, I can't do that I can't have you do what some of your friends are doing. And just have, you know, goldfish crackers here, and then a cookie here. And then Oh, you want milk and all this and that. And that's what most three year olds do. And it's hard because you want her to be normal. But I also need some consistency too. So she's, she's good with food most of the time. You know, she says she wants something. I'll Pre-Bolus for it. But we're not doing like a 20 or 30 minute Pre-Bolus either, like, we'll basically dose for it, give it to her she eats, but then she'll take you know, 30 minutes to eat a fig bar or something anyways, and it's something that's going to take a few minutes to hit her so she's still kind of getting that same Pre-Bolus and that's what fiasco has actually been really good. For is it doesn't seem to need quite as much of a Pre-Bolus to start working. So that's been helpful. But I have noticed and I've seen other parents say this online too, is that once you get to a higher point, though, it takes more to bring you down. So it's almost like the insulin resistance hits harder. But like you said, if you can avoid getting high in the first place, then it's better. So you know, we have some really good days where I'll look back at the 12 hour graph and be like, Wow, did she even eat today, cuz that's like a really straight line. And then other days, I'm like, Oh, she's just up and down, up and down. But her ups are still she might hit 180, and come right back down. But at that, it's like, well, I can't just keep pushing insulin in either, because then I'm just gonna be chasing it with a juice box. And then she's gonna constantly be on the roller coaster. So yeah, some of it is hard, because you have to have the patience to wait and see what's going to happen. But a lot of it is, yeah, you know, either we miss time did or didn't give her enough to begin with, which is mostly because we don't know exactly what she's gonna eat.

Scott Benner 41:03
Okay, I have two questions based off of what you just said. My first one is about grazing, like, what do you just want you to kind of put into like more specific language, what you find difficult about the grazing, eating.

Kelly 41:16
Um, just because when she does graze, it's usually higher carb things, you know, the goldfish and animal crackers and things like that, that aren't necessarily gonna hit right away. And we with having the T slim, we do the basal IQ. Like, that's literally the whole reason we went with that pump, okay, and it's fantastic. Most of the time, but it is hard, especially like with things like pizza, I just listened to one of the episodes you did with Jenny, where she was talking about how she bonuses for pizza. like, Well, that sounds fantastic. If only it worked that way for us, because it we literally cannot doser for pizza, she will eat it. She loves pizza. That's her favorite food, which of course God helped me with that, because it's, it's a nightmare. But she will eat a piece of pizza. And we found the typical kind of version of 30 grams for a slice actually works really well for us. But we cannot doser for it for about two hours. Because even doing a Temp Basal on it or something or an extended bowl is actually the beginning. It's too much. And then it ends up shutting off when bays like he sees she's going down, they'll shut off. And then of course, one of us will forget to turn it back on and doser and then she had the pie for hours. And it's just constantly pushing to get her down. Yeah, so we found it's easier if that's all she's eating. So usually, if we give her pizza, we try to give her either like a sugar free juice, or water or something like that, that's not gonna immediately affect her. We'll give her a piece of pizza. And then we just will all set an alarm on my phone for an hour later. And I'll check Dexcom and be like, Okay, how she started trending up yet. And if she has, then I'll put in and do the extended Bolus. So if we do it too soon, it just shuts off. And then we're screwed the rest of the day. But usually it's been working out better to do it that way. But that's kind of the same thing with grazing as if she's eating these carb heavy snacks. Then it's like well, do we just do a Temp Basal to kind of blanket cover all of it right now. And sometimes that does work. But she's eating something that may not hit her for an hour, then same issue, the Temp Basal is going to bring her down, it's going to turn off, we're going to have to give her a juice box to bring her back up just in time for those heavy carbs to hit her. And then we're dealing with highs again.

Scott Benner 43:35
Okay, can you so try to think of when this is gonna air? I'm getting good at looping.

Unknown Speaker 43:45
Yeah.

Scott Benner 43:47
So there's, there's ways to trick it. And, you know, into. I saw somebody wrote an article recently, and they said, you know, these algorithms are best if you leave them alone, let them do their thing.

Kelly 44:01
But I don't have your like, Yeah, right. Like, I don't agree

Scott Benner 44:03
with that completely. You know, like, I get what they're saying. But there's also a way to jump in and out of it out of the algorithm. Without it messing things up. In the future, you just sort of have like thoughtful about a little bit. And I find that if the algorithm lets her get past like 150 then I have to, I have to shut the algorithm off. And then and then I, I come in and I handle it the way I would handle it without without that, you know, I'm aggressive with it. And I and I push it back down very quickly again. And then as she gets to about 141 30 diagonal down situation. I let the algorithm take back over again, because there's I have so much. The idea is that I have so much insulin going in that moment. That when the algorithm tries to take away the bazel for the next hour It won't matter, like, so I've got my 140 diagonal down, which I want to be at again, it's gonna see the 140, diagonal down and be like, take all the bazel. And I'm like, I tricked you, I already have insulin in there to cover that bazel. So I'm learning how to like stop an arrow up by shutting the algorithm off. I'm also learning how to stop them from happening ever by balancing absorption times with carb. And that's what I want to ask you about the baseline Q, does it do that? Can you tell it? I don't know, this is a meal that has 50 carbs in it. But I believe that 20 of these carbs are going to impact greatly over the first two hours, I think 20 of these carbs are really impact over three hours. And I think 10 of them are going to impact over four hours, can you split them the dose up like that, when you tell it or does it not?

Kelly 45:46
Not really, I mean, you basically have to do it in your head and then tell the pump what to do. So I mean, we'll we'll kind of do that on our own anyways, she likes these, like for her breakfast, nine times out of 10, she wakes up and says chocolate milk and bar, which is like these chocolate protein shakes from Costco that she's obsessed with. Those will raise her immediately. And then she likes these like Fig Newton bars. And she'll eat one of those and combined, it's like 38 carbs. So we'll put that in. But I'll usually do an extended on that because I know the chocolate milks gonna hit her right away. And she drinks that real quick, like within five or 10 minutes. But the bar she kind of takes her time eating and it takes a while to hitter. So I can usually do like, Okay, well, we'll say 50% up front, because they're both roughly 20 carbs. So 50% up front for the chocolate milk, finish that and then the other 50% over an hour. And then if you know she starts going up faster than I anticipated, or whatever, we'll throw on either Temp Basal, or just stop it altogether and just give her the rest of the Bolus. And that seems to work pretty well to it. Just some of those things, you know, she we're used to dealing with on the daily and she usually wakes up in a good range, like our overnights are pretty fantastic. So that's why I feel like her bezels right. It's just as soon as she eats something that screws it up, because I never know, is she gonna drink all this issue not. So that's why I started doing the D extended on some of those meals too is it's just easier, at least then we can take it away if she doesn't actually eat it. Right.

Scott Benner 47:23
And we talked about this this weekend, too. And I said, that's one option, what you just said, you know, create an extended Bolus and take some Yeah, don't finish it. I also am a fan of for small kids Pre-Bolus thing an amount that you can be certain they're going to eat even if it's only a few carbs. And then maybe it's thinks a little bit but while they're eating, maybe you make two or three small boluses. Throughout the food. We're like alright, 10 more carbs. Definitely just when it Yeah, and you know, like that kind of thing. And that way you get enough of a Pre-Bolus to stop a spike. And hopefully you can get the rest of it in there and get it active before the food has a chance to take over too much.

Kelly 47:59
Yeah, and that is a lot easier when you're on a pump because you don't feel like Oh crap, I have to give them another shot for this. Like when we were MDI and we started listening the podcast, before we had the pump. It was ridiculous, because she was getting probably 12 to 15 shots a day

Scott Benner 48:14
for a two year old. But it was working right?

Kelly 48:17
Yeah, yeah, I mean, still not as well as it is now obviously, because again, the best we could do was half a unit. So you know, we give her half a unit, but then we'd have to give her juice because we know that's going to bring her to low. But also our idea of highs and lows have changed in the last year as well. I mean, we did your trick was like oh, lower your alarm. So you react sooner and all that. So right now, my alarm, like overnight for her is set at 65 because she doesn't ever just drop at night, if anything, it's a slow decline. So she'll hit 65, I'll wake up when sugar make calls me and then go up, give her a sip or two of juice, and she'll coast and write it out the rest of night, which is perfect. Okay. But then during the day, I have it at 70. Because if she's falling, which is something you should bring up to Dexcom. And I know other people have said this with the follow app, it would be amazing if we have the same notification of the double arrow down and the double arrow up. Because I don't get a notification until she's at whatever arbitrary number I've put in there. But if she's falling, even if she's at 200, I still want to know if she's falling real fast. Because can we catch it? Maybe before it hits a low? Yeah, and you know, that would be great. I mean, it works if we're home with her because we just hear it on her phone anyway, and can do something about it. But if she's with a babysitter or something, it's you know, hopefully she catches it and does something with it, too. But yeah, I mean, during the day, we've now got our high alarm set at 150 because we found if we she hits 150 and same thing, she's just kind of cruising there. I'll just do a Temp Basal to slowly bring it down. But if she's cruising closer to 200, I'm just going to jump ahead call it 200 do a correction and bring her back down. Because we obviously Miss timed or miscalculated something at that point. And then she's good. But we before, I mean, we were having a high alarm set at 300. Because we basically had to have read 300 before we gave her even half a unit for a correction, or just drop her to heart.

Scott Benner 50:23
That's all gonna get more. She gets bigger. She gets bigger. Yeah, yeah, you got to just fatten her up and get her to go. Look, can you get taller and gain weight, please?

Kelly 50:33
Yeah, I mean, she's like 40 pounds now just about and it's already getting easier to do that too. But again, the pump is just so much easier with that, because you can manipulate the bazel to do what you need it to do. So I do a lot of temp bagels, just to help kind of round it out. Because I do feel like that gives it a better rolling graph, as opposed to just the crazy spikes and stuff, the ups and downs. But then I think you've seen both my husband and I and now my mom has all worn a duck scout for 10 days. And so that brings so much more clarity and understanding to the parent. I think it should honestly be required that every parent were a CGM. Tell me what, you just have no idea. Like, I'm sure everybody has tested their blood sugar before and you're like, Oh, cool. 95 110 whatever. Like, that static number doesn't tell you anything, you know. So when we wore it, it was great, because I actually found my numbers tend to be a little higher than my husband's. So I'm probably on the way to prediabetes at some point in the next 1015 years. But it just, you know, it shows you I think I had a bowl of cereal at one point, like Cheerios, it wasn't even anything crazy. And my blood sugar rose like 165 and sat there for four hours. And I'm just watching my Dexcom. And I'm like, I would have dosed her for this two hours ago. Can I get some insulin here? What is happening? Well, but you just realize now some of those highs, you're not always going to avoid like it's natural to have that happen. Whereas I think people people look at a 65 blood sugar and they freak out. Oh my god, she's so low. She's not my husband wrote at 65 all night long one night, and that he didn't feel any different. He went to bed had a great night's sleep woke up and was fine. Like that's just his normal. So

Scott Benner 52:26
a couple things. First of all, there are plenty of people right now who know this that are just like, I hope he tells her Cheerios, even though they don't look all sugary. And they're not they don't have a picture of like a chocolate count on the front of them. They hit really hard. Oh yeah, Cheerios

Kelly 52:40
are tough. Cereal does. Yeah.

Scott Benner 52:44
But seriously, like there be in your mind, there'd be a way to think well, they're not frosted, or they don't have Yeah, but Cheerios are healthy. Yeah, they're healthy. They still hit your blood sugar hard. The other the other idea is, is about the, you know, your, your husband with the 65. I mean, I'm not a doctor, right. But I, I can agree with you. You know, like I saw today where or I put a new graph up in my talk. And I was I was showing people kind of like, what, what it looks like when things go wrong, and how I so that is the the crux of this one slide is listen, everything's not always going to go okay. But here's how I maintained my concepts throughout like, you know, so we got a, got a meal started without a good Pre-Bolus she got high, we corrected, the correction was just way too much. And here's how I shut bazel off and added juice. But as you can see, she got down lower than I wanted. And you can see on this graph, you can see she hits 65. And she stays there for 15 or 20 minutes until she kind of rises back up. My point in that part of the graph is so look, you see here, I'm not panicking, I've got the food and I've taken the bazel away I trusting the what's about to happen is gonna happen. You know, I'm not overloading or with carbs. But as I look out into the group, they're all they can see is the red, where the dots Yeah, they're just like, it's red. It's red. You know, my cat, but she's just it's 65 Plus, she's got the food. I think if I would have finger stuck or there, she probably would have been a couple points higher anyway. I mean, and yeah, think of how ridiculous that is. If she was 70 it wouldn't have been red. And they would have been completely comfortable with that.

Kelly 54:28
Yeah, you know, to me, it really is a visual thing. Yeah. And I mean, again, like keeping steady at 65 is very different than two arrows down at 65. I think we got two arrows down at 120 and we're like crap we messed up like where's the juice? Where's the candy something Yeah. And we'll get it back up. But yeah, to be steady at 6570 like that's a perfect night and that's where you're going to get the good a one sees. Unless of a rollercoaster I feel like the next day even I think if we can have a steady night. It helps lead in Have a better day. Yeah, it seems the days that are crazy are the ones where we had crazy highs overnight because she had like pizza late at night or something, or caffeine or something. And then yeah, the whole next day is just screwed up too. Well, to finish that idea, the rest of that graph is to show them like, Look, now we got through this. Now it's lunchtime.

Scott Benner 55:19
Yeah, not only did I still do exactly what I normally would have done with that meal, but I added some bazel. And they said why, like her blood sugar was gonna like, no, but back here. I took it away for a while. Yeah. And they started talking about, you know, like, bazel. You know, everything you do with insulin is not for now, it's for later, you know, every decision you make with insulin right now affects later, it's not really affect Yeah, as much. So I'm like, so I've basically by taking her bazel away in that 1011 o'clock hour, I've created what's going to be a black hole of basal insulin an hour or so in the future. And I was like, so I'm going to need extra power there to overcome it. So I put in enough insulin to overcome the food. I put in her regular bazel. And I put in some extra bazel to just sort of try to keep on top of things. And you can see her blood sugar, by the way, cruises out of this graph at one 10th. Really cool. Excuse me, but it's not, no one would think like that. Yeah. And then just this morning, someone reached out to me online and was like, hey, my daughter's blood sugar got really high this morning out of nowhere. And talking about like, What happened there? And I'm like, No, what happened before and it turned out the kid was low overnight. And she'd taken bazel away for a while. And I was like, yeah, so that is one of those moments where you're creating a problem hours from now. Like, yeah, fixing your problem right now, right? You're taking it all the bazel away, and it's keeping this low blood sugar from getting any lower. But when it starts to pop back up, you basically have to look back at that base and go, how much did I take away? I need almost all that back now.

Kelly 56:55
Yeah, we actually did that. The other day. She I think her birthday was yesterday, we did her birthday party on Sunday. And this was the first time we've had a bounce house for her. So we got you know, 15 kids in the backyard going crazy in this bounce house. I had originally thought like, Oh, I should have some sugar free drinks, like set aside for her so she can drink whatever. Are you kidding me? Like we're given her juice, like everything, all the carbs so that she can continue jumping. And she had an amazing graph during the day. And we had actually got to the point where we just straight up took her pump off, which is another thing that we actually like about t slim is it doesn't have to be on her 24 seven, like we can take it away, she can have a bath or do whatever. But we took it off and just let her go and play and be a kid. And we actually experienced that. Like she had great blood sugar control during the day, because the jumping was of course keeping her low. We gave her all the juice and stuff. And then once she took a nap everybody leaves. And then it starts creeping up creeping up and we had like a couple hours of low high, but just have enough start pushing that bazel back end because yeah, she'd been without it for a few hours

Scott Benner 58:05
when you took the pump off. Yeah, it's so interesting to hear people like it is very true that everybody's different and that there are gonna be things that excite one person about something the other, because I feel this like you just said something you feel very strongly about it. And I'm not negating it. We like the T slim because we can take it off. And yeah, I like the Omni pod because it doesn't come off.

Kelly 58:25
Exactly, because I'll be in that position when she's older and doing sports and stuff but honestly right now too it's just it's so big on her little body like 40 pounds and like little stick arms and she is tall for her age. So it just I don't think it would work but I do really want to try it at one point. And I think you know as technology gets better and stuff we're going to be switching around anyways. Like I'm not 100% tied to anything. If someone's going to come out with better product Guess what, that's where we're going cuz she's three we're gonna be dealing with this as parents right for at least another what 23 years while she's on our insurance and then from there

Scott Benner 59:04
don't switch on the sake of switching but when something's better it's Oh yeah, you know I I've been in a room before the army pod I'm like keep innovating because Yeah, I like you guys.

Kelly 59:14
Yeah. excited for like control IQ just got FDA approval. I have no idea whether she's actually eligible based on her age or not. But I'm like are knows great and I'm sure he'll push for it too. If he thinks it's gonna be a good thing. Maybe one of those like, let's give it six months and see if there's any bugs that may be worked out before we try it on the three year old but you know, I love the technology. And I I feel for these newer parents too because they are kind of scared I think sometimes because they are so rely on it. But you know, we'll do during the Dexcom two hour warm up, depending on what she's doing. I may finger poker once, maybe twice during that time period, just to make sure that what I think is supposed to happen is actually what's happening first. But for the most part, yeah, like, that's fine. I will say I think one of the biggest things, it's funny, my brother just moved back to town. him and his wife were living overseas for the last two years. And they're in town now. And they're like, yeah, we're here. We want to learn how to take care of her. You know, where do we start? I'm like, um, I feel like if you had asked me that a year ago, I would have given you you know, all the rules that the doctor gave us. Now, the hardest part is just so much of it does require that forethought, like you were talking about. You have to know what's going to happen a few hours from now, as far as what to do with the insulin. Our babysitter's rocked it with that, and my mom, who's the other babysitter, my mom and dad, they rock it. But other than that, like you can't explain to someone how you do what you do when you just do it. Does that makes sense? Like I can't explain why I decided at this point, oh, maybe I'll give her a little snack or something. Or why I'm deciding to do a Temp Basal instead of a correction. It just, it's what I do. Like you live with it day in and day out, you just do it, and hope it works. And if it doesn't work, you bank it for later. But that's something that's so incredibly hard to explain to someone, especially when it's someone who wants to be able to watch your child. So I almost feel like now the biggest thing we can teach someone is, these are, this is what a low is, this is what needs to happen if it's an emergency low situation. So I have friends I've been able to leave her with, you know, they live five minutes away, I've like left her and then run home to do something or whatever she's been there for like an hour. And of course, like I have Dexcom so I can follow her on my phone. And I can call them if I see something going weird. But for the most part, like I just need you to know what to do. And an emergency is really the biggest one. Because otherwise I'll just tell you what to do.

Scott Benner 1:01:55
super glad that you know what to do. I'm even more happy that you don't know how to explain it because that's one less person is going to decide to try to make a podcast one. But But I do you are you at the point yet where you can do it remotely? Like that it like in your head? Can you can you do it without being there yet?

Unknown Speaker 1:02:15
What I mean? Like,

Kelly 1:02:17
like how what to do for her? Yeah,

Scott Benner 1:02:19
like, I haven't been with Arden for the last six hours. But if she completely lost her ability to be to do anything, I could tell people right now what to do remotely? And I haven't been with her. I haven't seen what she's done. Oh, yeah. Tell by the graph and how things have been going like what to do, can you it's almost like, it's almost like being like an IT person. Like, like explaining how to get through someone's computer with out seeing their computer. Like I feel like that with diabetes like I can I can get you through this program without being there.

Kelly 1:02:54
I think so. Yeah. Like her, her babysitter just text me like half an hour ago and was like, hey, she hasn't eaten anything since you dropped her off. But she started to get high. Did you want me to do a correction or Temp Basal? And I was like knowing that information. Let's do this. Sometimes I'll see that she's high. And I'll text whoever has her and be like, Did she just eat something? Or was that out of nowhere? And they'll be like, Oh, yeah, she just ate but I didn't dose her enough or whatever. So General, as long as I know why whatever happened happened, then it makes sense. But yeah, I mean, I can use look at it and be like, Oh, she must have eaten here or something. Except on those beautiful days where there is no spike, then it's like, Wow, did she actually eat today? I don't even know.

Scott Benner 1:03:36
That's very cool. So listen, I'm thrilled for you. Because you've obviously come a long way in a year, I'm a little disappointed that you didn't tell the people in your life who wanted to learn about diabetes, listen to the podcast. And other than that I'm feeling good about what we owe. And

Kelly 1:03:51
well, I have actually my dad has started listening to the podcast, and he's hoping he'll be caught up before my episode actually airs. But yeah, he's he's learned a lot too. And he's kind of caught on the same way. My husband is like, Oh, well, yeah, this is what you told us originally. But now that you've been listening, this makes sense. So he listens usually an episode a day cuz he rides his bike to work. My mom is just not really a podcast person. But she does really well to just kind of guessing on carb counts. And you know, same thing if it's not enough or too much or whatever. And our babysitter's amazing like, it sucks because we really only have a couple people that I really trust to watch her for long periods of time. But, you know, it's really no different than people who don't have family that live close by like you have wire to solid babysitters, and then you just take your kid with you everywhere. How they're,

Scott Benner 1:04:40
yeah, no, I hear you. Well, listen, I just heard back from Arden about our lunch. Two things. I don't care if your mom's not a podcast person or not. That's not an excuse not to listen. Arden's blood sugar's 90 right now. And she told me she ate everything except for the half of the bagel. So we just did 20 more carbs. So basically We ended up doing I thought it was at in the bag total, I'm guessing I don't know how many grapes there were, I don't know how many. Basically when I put the bag of grapes and cherries, and I thought to myself, it 20 and then I put into cookies and I don't remember, I didn't look at the carbs, but I remember thinking 15 so like, there's 35 I guess she didn't eat the bagels to the bagels out the popcorn is like another 15 maybe so 50 and then I'm in that of course weird space for I don't remember the other thing I put in there. Oh, I gave her two little pieces of chocolate. Because I'm Oh boy. And that's like the most I know about periods. I figured she'd want chocolate. So I put like a couple little dove chocolate hearts in there. And I don't remember what else there must have been something else I'm not thinking of right now. So we'll just do that. And then if in the next 30 minutes, I see any indication that our blood sugar is trying to run, we'll just yank on the leash and pull it back before it gets away from us. Do you

Kelly 1:05:59
find though that those things are going to hit her differently? Because like everything you mentioned, I'm like, okay, cookies would hit her later chocolate would hit her later. cherries and grapes, those are going to hit her immediately. Like just with the complex versus simple carbs. She leveled out it though.

Scott Benner 1:06:13
But yeah, but at the same time. If you think back to when we did this, it's been 30 minutes, 35 minutes since the first insulin within. So that's all there now it's active. So I'm basically creating an extended bolus right now by doing this.

Kelly 1:06:29
Yeah. Faster stuff.

Scott Benner 1:06:32
There's I'm trying to think 918 36 probably like four. Actually, the first Bolus was five units.

Unknown Speaker 1:06:42
Five, no,

Scott Benner 1:06:44
yeah, five. And this next one's two and a half. So yeah, you know, that'll be it. So it's basically like Pre-Bolus, saying five and putting two and a half and a half hour later when she ate more. It's not perfect. This isn't going to work perfectly. But it's close enough for this scenario where she's like, look on my stomach hurts. And I might not eat all this.

Kelly 1:07:03
Yeah, you know, well, and so grapes reminded me when my husband was wearing the Dexcom. We, he did an accidental experiment where, you know, he had like his lunch and had grapes with it, and, you know, no major change or whatever. And then the next day, he decided he was going to have just a handful of grapes with no other food. And that shot his blood sugar up because they are like straight sugar, you know? We realize like, oh, okay, so even in the non diabetic person, like the food is basically working the same way. He says simple sugars with complex carbs. It tends to kind of even them all out. Yeah, versus you eat straight sugar by itself. You're gonna go up.

Scott Benner 1:07:47
By the last couple of days, excuse me. Arden's after school snack has been late. It's like she's, like, all of a sudden, she's a 55 year old lady on a Sunday evening watching television. So crackers and cheese and grapes and stuff like that. And, and I'm seeing, you know, no real impact in the beginning, and then it gets really harsh, like 45 minutes later. Yeah, you know, we just kind of adjusted a little bit how we put it in. But this was really great. Kelly, thank you for coming on and doing this. I really appreciate it. I feel like I did that. Was there anything that we didn't say that you were hoping to say? Oh, I have. I want to find out your bit. So you're six months pregnant? At the beginning, you said my husband doesn't know what I'm having. But I do. So before that, but then we never said it. So what do you have any?

Kelly 1:08:34
Yeah, so we will be doing like a gender reveal type thing and the next month or so? Because we only have like three months ago. But yeah, I found out at the ultrasound because I don't like surprises. But we are having a boy this time. So we'll have one of each and hopefully at least one without diabetes.

We'll see how different that can be.

Scott Benner 1:08:55
Good Hope. Yeah. Well, one of each is nice. That's it. Congratulations. Yeah, he'll be excited. Was he is he looking for a boy?

Kelly 1:09:04
Um, he we were actually both really hoping for another girl. So it actually took me a minute when I found out to like, process it because I really wanted to be able to like reuse her clothes and you know, have that whole like little girl experience again, but I'm, I'm happy about it now. So I'm sure he'll be happy either way. He's, he's big on cars and stuff. So he'll love Oh, boy.

Scott Benner 1:09:22
Do not forget to blame him. After you tell him. Just be like this is completely your fault. Right you I wanted another girl and now that I've done

Kelly 1:09:32
right, you control the gender here so it's not on me. Wait, I'm just throwing it. And

Scott Benner 1:09:36
don't forget later to tell your son. How you were hoping you'd be a girl?

Kelly 1:09:41
Yeah, yes. I will be sure to remind you of that. Yeah, no, I never decided Alexis is super excited to be a big sister. And I think she'll be great. So

Scott Benner 1:09:52
congratulations. Let me be the first one. Does anyone else know besides you and I and the doctor up?

Kelly 1:09:57
Yeah, a couple of our friends. No, but they've been sworn secrecy. So,

Scott Benner 1:10:01
I felt like it was just me now that it isn't.

Kelly 1:10:03
But hey, maybe Scott will be a contender for the name.

Scott Benner 1:10:06
Wait a minute. Let's get to that. Is it anywhere near the running?

Kelly 1:10:12
It could be because it's actually my brother's middle name. So it's not 100% out of the realm of possibility,

Scott Benner 1:10:17
right? I'm gonna let you go. But let me explain to you how to handle this. Okay? If you end up using the name because it's a family name, that's cool. But when you tell me you don't mention that, you just say absolutely. I gave the baby Your name Scott. You don't even have to say named him after you. My ego won't even hear that part.

Kelly 1:10:33
It'll be like Scott juicebox meter something go crazy.

Scott Benner 1:10:35
I don't want you to lose your mind. Just when you tell me you lie to me and tell me it was for me? Absolutely. I want to have a stable of Scots by the time this is over.

Kelly 1:10:46
Yes. Pardon me? Well, you're gonna have all these babies named.

Scott Benner 1:10:50
That's what I want. That's why I want to like a little army case I ever need like a security force when I get older.

Unknown Speaker 1:10:55
Exactly.

Scott Benner 1:10:56
What would I need a security force for by? No, you imagine? Well, I want to thank Kelly for coming on the show. Even though she did not end up naming her baby Scott was a pretty big letdown. I emailed her just the other day and I said, Hey, your episodes going up soon. Any chance that kid's name is Scott. And the answer was no. said it was in the running. I know better. Kelly. Thanks so much to touch by type one. And the Contour Next One blood glucose meter for sponsoring this episode of the podcast go to Contour Next one.com forward slash juicebox or touched by type one.org. To learn more. There are also links in the show notes of your podcast player and at Juicebox podcast.com. I'll see you soon.