#182 More Good with Melinda
Melinda was diagnosed with type 1 diabetes 32 years ago.
Today we talk about Melinda's life and reveal Arden's latest A1c.
You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Alexa - google play/android - iheart radio - or their favorite podcast app.
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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.
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#181 Charlie
Alicia is Charlie's mom and she made me invite her on the Juicebox Podcast... :)
Charlie was diagnosed with type 1 diabetes the day after his second birthday, this is his story.
You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Alexa - google play/android - iheart radio - or their favorite podcast app.
+ Click for EPISODE TRANSCRIPT
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 0:00
Hello, and welcome to Episode 181 of the Juicebox Podcast. Today's episode, I don't know what I'm gonna call it yet, I'm editing it, but I still don't know what to call it. So, I mean, you know by now because you saw it in your podcast player, but at this moment, I don't know. Well, that was information you didn't need. Here's some information you do need. This episode of The Juicebox Podcast is brought to you by dancing for diabetes, Omni pod and Dexcom. I'm going to do something here. I don't usually do a couple shout outs for social media people following the show. This one's the carb counting mess on Instagram who told me that they left the endos office with a six five a one c congratulations. And the endo asked how they did it. She told her about the podcast and now the podcast has been introduced by her endocrinologist to other people in the practice. And before she knew it, that person was coming back with better a one c results. So carb counting mess. You're not such a carb counting mess, first of all, and secondly, thanks for sharing the show with other people, especially your endocrinologist who seems willing to share it with other people again, that was really cool. And here This one's from Facebook. Hey, Amanda, in Massachusetts, how are you? Congratulations on your 6.181 se. But next time when your mom tries to take a victory lap Don't laugh at her in the endo office. Seriously, congratulations. really well done. Six. One is quite something you should be really proud of yourself. And let your mind be happy for a second. Don't roll your eyes that are okay. All right. Let's get to the show, shall we? This episode is with Alicia. Alicia is Charlie's mom. And Charlie was diagnosed The day after his second birthday. I really think you're gonna like this one. But 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 changes to your medical plan. And you know what else you should remember dancing for diabetes calm that's dancing, the number for diabetes.com the people that dancing for diabetes aren't asking you for anything. They just want you to know more about them. Please visit dancing for diabetes.com. There's also links in your show notes. And while you're looking in those show notes, if you're interested in getting an Omnipod or Dexcom, there's links there to
Alicia Schultz 2:15
I am Alicia Schultz, a scientist at a university doing who does research for a living and as a husband and two sons, and one of them has type one diabetes.
Scott Benner 2:29
Are you able to say what type of research or do you do whatever lands on your desk,
Alicia Schultz 2:33
I work in a biochemistry lab. And our I work in a School of Pharmacy. Our lab does drug discovery. And my project is looking for alternative therapies to hormone replacement therapy try to alleviate the memory decline that occurs in postmenopausal women.
Scott Benner 2:57
That's just what you tell people to get funding you're really trying to fix the zombie problem. Is that correct? Is there a zombie problem? Is it gonna happen? Yes or no? Alicia? I need to know right now.
Alicia Schultz 3:08
I don't think it's gonna happen. I hope it's not and honestly, with based on having type one, there's parts of my brain that are like in the event of a zombie apocalypse. What will we do?
Unknown Speaker 3:18
What do we do? Yeah, I thought that thought
Alicia Schultz 3:21
like, I don't want to start a pig farm.
Unknown Speaker 3:23
Oh, make your own insulin. Yeah,
Scott Benner 3:29
we just got a plan everyone is that's what you're hearing right now is that most people don't have a real plan. They, I always tell people that if it happens, you come get me because I'm making. And so you're gonna want to be with me because I'm gonna make it to the end. We're gonna. But uh, I don't actually believe in any of that. I just think that, um, it's nice to get you rolling and comfortable. So we're talking so you have a son who was diagnosed pretty early, right? How old was he? Are we gonna say his name or no?
Alicia Schultz 3:57
We can say his name is official name is Charles. But we often early on. So but I have a tendency to switch between.
Scott Benner 4:08
Does it matter if is he is it your like, um, how you feel Charles or Charlie? Or is it just happens?
Unknown Speaker 4:15
I think so.
Unknown Speaker 4:15
You think so?
Alicia Schultz 4:17
I'm not sure? Yes. I think sometimes. I'm trying to speak more formally a column Charles. Okay. I don't know. But yeah, he was diagnosed. is a day after his
Scott Benner 4:31
lease you cut out I'm not sure what you said he was diagnosed
Alicia Schultz 4:35
literally the day after his second birthday. Wow.
Scott Benner 4:38
So there was still like cake on the counter under foil and stuff like that and stuff was all over the place. And you were coming down? Yeah. Well, is he your oldest or your second child?
Alicia Schultz 4:49
I'm sorry. Yes, my oldest, actually didn't get a birthday that year. Unfortunately. Because the party was that weekend, the weekend after his actual birthday occurred. And we canceled.
Scott Benner 5:02
Yeah, you would think just did you just do it with some jello at the hospital and a candle or just look at him go you don't we're gonna just do this next month, you're not even gonna know the difference.
Alicia Schultz 5:13
We, I, we, I think we planned on trying to have something at some point and it just didn't happen. Luckily, he had been at my parents house, and they had done like a little celebration with him, which I'm sure was great for undiagnosed diabetes. Um, you know,
Scott Benner 5:37
wow, just blood sugar wasn't it was a mean, you took him to hospital?
Alicia Schultz 5:42
You know, I don't but the we have like this portal thing. And the earliest, like one of the earliest test results in there actually wasn't even that high. I think it was only like between 350 and 400.
Unknown Speaker 5:57
How did you catch it?
Alicia Schultz 5:59
Well, it kind of started about his birthdays. early November. It was sometime mid October, I went camping with just him and my husband and nobody had going on. He had something else going on. Like a last minute trip.
Scott Benner 6:14
Yeah, I would have said I had something going on too if you're going camping but that's that's that's smart. Camping, oh, no, I might have something
Alicia Schultz 6:22
like camping or camping or children is like a whole other thing. So, but it was with other another family that has kids and literally their son is his younger. So very close in age. So he woke up in the middle of the first night. They're drenched in what I thought was sweat. Some urine, it obviously leaked through his diaper. And just like screaming for water, like what is going on. And that whole weekend, we went through a ton of divers, and and then it kind of fluctuated for a week or two where he would have days where you drink a ton of water and other teams wouldn't drink quite as much. But he's kind of like he's always been a good drinker. So it's not that abnormal. And in hindsight, unlike me, that was just type one developing. Yeah, it just kind of kind of came and went and I feel like something's wrong. And so I called the pediatrician. And I wrote it off a little bit is like, oh, maybe he had a growth spurt, and his bladder didn't catch up. And
Unknown Speaker 7:35
that is the least thing anyone's ever said.
Alicia Schultz 7:39
I'm like, as a scientist, my brain was like, a no, can that really happen? I don't know. I don't know that much about actual Oregon development, you know? And he wasn't really he hadn't, like lost. Like, he's also always been like, pretty good eater. And so it's not like he was, like, he's n times where he would eat a lot. And so it wasn't that. abnormal. Yeah. Who have him, you know, like, so some of the signs that like are typical, like, were things that we didn't see as being abnormal for our kid. And he wasn't like losing weight. Okay, it we were kind of like, not likely this. And we had his It was literally his, like, a year pediatrician normal checkup that was scheduled for the day after his birthday. We're like, Well, we've got this other one scheduled already. And you know, it's kind of like, Well, probably not, this is not likely to keep an eye on it. And if anything else happens, definitely call us back. And then he threw up. And I'm like, and it was like one time, and then he didn't throw up anymore. And then, like a few days later, after going up for breakfast, and cakes. He threw up again. And we're like, cool. And then and then we got sick. So we're like, oh,
Scott Benner 9:09
so then he was sick. Yeah, boy, it's so. So yeah, circumstances. He
Unknown Speaker 9:14
did have a stomach bug, right? Yeah,
Scott Benner 9:17
but circumstances kept pushing you away from like, the idea that he might have diabetes. It's interesting. Dancing for diabetes provides free dance class for kids and teens with Type One Diabetes. They also host several outreach events. And they have a program for kids teens and adults called touched by type ones dancing for diabetes.com.
Alicia Schultz 9:37
That's why he was with my parents for like the day but like on his actual birthday, as you
Unknown Speaker 9:41
guys were says,
Alicia Schultz 9:44
Yes, my husband and I were actually sick. And he came back to us. And I'm like, why are we better and he's not. And like, still throwing up. So we went to our pediatrician appointment. And they really fun to get a urine sample from a two year old. They literally stick a bag
Unknown Speaker 10:12
around this whole business. Uh huh.
Unknown Speaker 10:14
No kidding. Yeah. Yeah.
Alicia Schultz 10:16
Well, that would be Harold Hill, you don't grenade on command. So it took a while. And once we had, like, why you actually left the church. And I just bombed and waited ages, like every 20 minutes, checked his diaper to see if there was any urine in the bag. And the minute there was any I had given me like a urine sample cup, I put it in there. And my husband took it back to the pediatrician. And they were gone a while. And that's I was like, at home be like, Oh, yeah. Good. Yeah. And my husband came home and like, a lot of my son was home with a urine sample. And my son was sleeping on me. And he's like, honey, I need to go to the hospital right now. And I was just like, oh, man, no. We went to the, yeah, the emergency. They were waiting for us. And it's being in an emergency room with a toddler is pretty traumatic. Sure. Like, I felt so bad for, like, having an IV put in. Lab checking in the ER is like, hourly. So it was just not good. It was interesting, because I'm sorry,
Scott Benner 11:53
No, I was just gonna say that Arden was diagnosed a couple weeks after her second birthday. And but we figured it out more in the middle of the night. And so she was pretty, you know, wiped out and, and asleep when we took her and she slept through most of what happened in her, you know, initial, you know, being checked over. And the one thing that my wife and I look back on now, and we realized we wouldn't have done the same way is that when it was time to take her to the neck, you they took her from us. And they and we didn't go with her. And they they put us on, they put us in a like a holding room and told us to get some sleep and they'd come get us in a couple of hours. And we did that because it was like by then it was like 330 in the morning. Maybe my wife has said a million times and said, Why did we not go with her? In hindsight, I wish we would have went with Arden, you know, thinking about being able to see into the past and make better decisions or maybe even see into the future, have you considered using a dexcom continuous glucose monitor. Because with the dexcom CGM, you can kind of do just that. You can see what happened in the past with your blood sugar, which will help you make decisions in the future. And you can also, if I make change the future by making better decisions in the present, those better decisions might be bazel, rates boluses, they might be Pre-Bolus thing, they might be, you know, 20 minutes after a week going, oh, wow, I don't think I counted those carbs, right, I can use a little more. And where will you get that information from? Will you'll get it from the data that's coming back from your dexcom continuous glucose monitor. The G six sensor is amazing. Arden says it goes on completely pain free. And it doesn't require any finger stick calibration. Not only that, but there's a share feature. And let me just tell you a little bit about that when the person wearing the CGM, whether it's your child or your spouse or yourself, you can allow followers to see your blood sugar in real time. So maybe you're going to be watching your kids blood sugar while they're at school. Or maybe like some people who listen to the show, maybe their wives or nurses overnight, and they keep an eye on it for them when they're busy at work. There's a million different ways to use the share feature, you'll decide which one is best for you. But no matter what you do with it, I believe that you're going to find that your decisions and your outcomes are better. Please go to dexcom.com forward slash juice box for use the links in your show notes to find out more. You'll also be able to find links at Juicebox podcast.com dexcom.com Ford slash juice box to get started today. Why did we not go with her? No, they told us not to and we just did what they said you know, but and you're so like, crying and like you know knocked over and everything like you're not really thinking straight and maybe that's why maybe they're like, let's go keep the crying people away from the baby. But, but we just it was really you know, it was really it was just an overwhelming experience. I get really less so I don't know what happened to Arden in those first couple of hours like you do. I don't want to get too far off track but I have to ask you have sort of a northern accent. But you went camping in mid October. So yeah. Are you crazy?
Alicia Schultz 15:07
I'm from Wisconsin, Wisconsin, and we love, love our seasons, including fall, and it was gonna be a pretty nice weekend. And
Scott Benner 15:18
you were on your way to October Johnson this like summer still to you. So you know it Yeah. Right. Because I mean, it's it's
Alicia Schultz 15:28
transitional, like it can be good or it can be bad. And if the weather is nice, it's awesome. Because you've, they're beautiful. And oh,
Scott Benner 15:37
my brother moved to Wisconsin so long ago, I've never visited him. And he's always like, why don't you come? And he's like, what about the lakes? And I'm like, Are you kidding me?
Alicia Schultz 15:48
I was like, I have no free time to come in summer because we're all like, I felt like we need to go do something right now. All the time. Yeah. So many festivals. It's fabulous. Like you. Yeah, airplanes and
Scott Benner 16:02
beer. And like, all that stuff. I know. He tells me. But I keep telling him like, I have no time to travel. And the one time you want me to travel, you may go to Wisconsin, and then your selling point is a lake. I'm like, I don't know. So. So okay, so
Alicia Schultz 16:16
outside of Milwaukee, like he was like best kept secret. Don't tell anyone. It's pretty amazing.
Scott Benner 16:23
It's pretty amazing. A mock. My brother is nearby. I think he moved out to Oshkosh originally. And
Unknown Speaker 16:32
he's, that's where I grew up. Okay. And he's somewhere around town.
Scott Benner 16:35
He's somewhere still near there. So.
Alicia Schultz 16:38
Okay. I don't exactly know when you could airplane. Like he's got to be around Africa.
Scott Benner 16:42
Because they do that big festival. Wherever, where everyone comes in and like flies like little airplanes like this. Okay.
Alicia Schultz 16:49
Yeah. Yeah. It's huge. We get people from all over the world.
Scott Benner 16:53
Well, we've dug into the extent of my Wisconsin knowledge right there. So other than once told me, my brother, I should have my brother on this podcast to just tell this story sometime of a guy he worked with, who went on a drunken, like ride in a Winnebago with a friend and beer. And it ended up with them getting shot by a cop. It's it's maybe the best story I've ever heard in my entire life. And it's it. That's exactly what he said, when it was over. He was like, and then he finishes like, these people have stories like this constantly. It was when he was when he was first there. It's like, he called me he was like, you have to hear what I'm about to tell you like listen very closely. And I was like, Okay, and then he spotted tail. It was fascinating. I literally might get him on just to tell that story. I wonder if he could still tell it that well. But anyway, so Okay, so trolley. Choice diagnose, how long did you spend in the hospital afterwards?
Alicia Schultz 17:53
Um, well, we went to the ER on Thursday. And then they eventually checked us into the actual hospital. And we went home on Saturday. Like, a couple days. Yeah. And then these we didn't want to be a more the, we were like, what do we need to do to get out of here?
Unknown Speaker 18:17
There's beer to drink.
Scott Benner 18:21
But so Okay, so you come out. So this is only about a year ago, right? He's only about three now.
Unknown Speaker 18:27
Yeah, uh huh. Okay. And November,
Scott Benner 18:30
November, see you diagnosed and I mean, end of 2016 beginning of 2017. ish.
Alicia Schultz 18:38
Yes. And 2016.
Scott Benner 18:40
What was the What was it like leaving the hospital? Like, what did they give you? What were they telling you how you were going to manage this? Like, what tools did you have?
Alicia Schultz 18:51
We have learned how to focus on anger. Do a blood sugar check. He had a one touch Berio and insulin pins, okay? All the things that go along with an insulin pen. And a like, if his blood sugar's this, give him this in the in these ranges. Give him this. And that's kind of all they said, at the time. Oh, they also gave us syringes, which was really weird, because I'm like, we're leaving from the pharmacy. And we're like, why are we taking these boxes? Like, yeah, I don't even know what to do with this. But a little did we know it was because on Monday, we were our children's hospital is a really, really great diabetes clinic. And what we didn't know is that they have all this education, and that we were in the hospital getting survival day one. We didn't realize that and we had the status appointment scheduled for Monday morning at the at the clinic. And we had didn't know but that was survived. Date education. Yeah, that's what really syringes Yeah,
Scott Benner 20:05
it's funny they give you all that stuff. And and you're staring at it for a couple of days go on like, What? What are we? What is this for? And it's a very unlike they had a plan but they didn't really let you in on it very much they sent you home with if this happens to inside of it's possible you just didn't hear
Alicia Schultz 20:26
Yeah, well or didn't like I said, Oh, no actually can I, I personally emotionally a wreck, like I equated now to, like, postpartum emotions almost like just wild crazy emotions with random crying. And I was like, this is like having a newborn all over again. Like I feel out of control. And I don't know what's going on. And yeah, it was it was not good.
Scott Benner 21:00
But you feel like you're not gonna grow up like you feel like you feel like it's a newborn. You don't understand how to take care of it. And it's not gonna get any older and you're never gonna figure it out. Yeah, yeah. You just gonna be caught on that moment. Like that whole time of that. And that the unsure. I'm about to kill this kid feeling that that that spot?
Unknown Speaker 21:19
Yeah. It's a great place. Yeah. Yeah. So that's wonderful. How good was
Scott Benner 21:24
the was the instruction when you went back for the basically for the bigger boot camp on diabetes? Did you leave that feeling better or not? Particularly?
Alicia Schultz 21:34
Yeah, we left feeling better that they taught us how to pull up in from the pen cartridges with syringes. And we actually started doing is the pens to do half a unit, we actually started doing estimating quarter units, right. And so we had a new scale. And then they also gave us a fixed carbohydrate diet to help basically figure out numbers and ratios and stuff for a little bit before it could release us, I guess, into the world of carb counting. The hard part for that part was a six carb amount per meal, it was like 30 grams of carbs. And I think for some people, that might be easy. But my kid eats like, now it's like 70 grams on average a day. So to get him 30 in one meal. And this was like, you know, a year ago, he was probably averaging like 60 a day at that point.
Scott Benner 22:41
So this was too much food for you in a setting at that.
Alicia Schultz 22:44
Yeah, it was just like, forcing carbs to him, just to give him insulin. Like it was dumb. It's just like, stupid, like, when you
Unknown Speaker 22:57
keep eating well.
Scott Benner 23:00
Alicia, I'm sorry, you broke up a little bit. So I got confused. But what did they what it made me think of is that that's just the math that the doctor knew. Like, it's this much insulin for this many carbs. Like could they not have like divided that in half?
Alicia Schultz 23:15
Yeah, yeah. Exactly. Like but luckily by Thanksgiving, cuz his birthdays early November. Luckily, by Thanksgiving, like literally the day before Thanksgiving, we had done a couple different education, because they realized that we were on top of things and are willing to very quickly learn stuff. And so they gave gave us two education days at once. Okay, or Thanksgiving, which allowed us to start counting.
Scott Benner 23:50
Okay. Well, so how to So right now, are you still using pens?
Alicia Schultz 23:58
No, no, no, we? Well, basically don't use the pens for that one weekend. Okay. We very specifically switch to like, straight up syringes, right? pulling our own influence, rather than having the pin measure it. And we we did that? until we got a pump. How long have you had a pump? Oh, 11 months.
Unknown Speaker 24:27
Okay. Oh, wow.
Alicia Schultz 24:28
Oh, she was like early March. Yeah, you were all already on our second pump.
Scott Benner 24:34
Is it because you didn't like the first one or because what what how did you how did you get the first one was?
Unknown Speaker 24:40
Oh, they stopped making it.
Unknown Speaker 24:43
They were like, Hey, here's
Alicia Schultz 24:46
the all the deals are switching to something else.
Scott Benner 24:50
Right. And you knew you had to so you took advantage of one of them?
Alicia Schultz 24:54
Uh huh. Yeah.
Scott Benner 24:54
Which one did you go to?
Alicia Schultz 24:57
It was army pod because we really With him being little, um, we needed something that had her like a remote. Like, having to fiddle with his. It was no, he's an active kid. And so
Scott Benner 25:15
we needed to hold him down to give him insulin. So he would move around while you were trying to use the controller that was attached to him by the tube.
Alicia Schultz 25:22
Yeah, running after you have a tube, you can't run away from me. And you're like, running after him holding and hoping that all the A, you don't drop the expensive pump and break it. Or be that you just pull the infusion site out. And then you have to do that whole rigmarole again. So yeah, it's a pretty fun thing. So having a remote, kind of a deal breaker. And we we got a Dexcom before Christmas that year. So to me in the hospital, everything we hit medical Max, and I'm like, the, the children's people's like we can do for you. And I'm like, What do we need to do to get a dexcom CGM? And how did you find out about that so
Unknown Speaker 26:09
quickly? How did you find out about that so
Alicia Schultz 26:11
quickly? My husband, Josh is in the tech world. He's a software developer writes code all day. And there's a pretty prominent guy in the tech community that my husband follows for his, like the tech side of his life, he happens to also be a type one diabetic. And so my husband was kind of aware of his his stuff that he had put out about. And usually, like, we're in the hospital, and I'm emotional wreck. And he's like problem solving by going up all about stuff. And so when we left the hospital, we wanted a pump and a CGM. That's gonna feel like we said to get a pump in a CGM. And they were like, Whoa, whoa, whoa, you need to slow down.
Scott Benner 27:10
Like, no, my husband follows a guy for his coding, and he has diabetes. And he has this stuff. And let's get going. That's such a strange route understanding that stuff. That's very random, actually. Yeah. But cool. I mean, very cool. Because it fast forward. Did you write it? It took you right to
Unknown Speaker 27:27
a total it? Yeah.
Unknown Speaker 27:28
It sounds like that much.
Alicia Schultz 27:31
No, they didn't. And even with the pump stuff, they didn't, they didn't fight us with it. They were just like, okay, we have all this education that you need to get through. And they tried to get that as fast as
Unknown Speaker 27:41
I say. I say,
Alicia Schultz 27:43
like, last January a year ago, I think we were at the clinic, four different times just for education. Just to like, get all the classes. I mean, some of them were classes.
Scott Benner 27:59
Did you have to do like a nutrition class pump?
Alicia Schultz 28:03
Yeah, all that like a pump, try on them. They have all the pump reps in there. So you can like look at the pump, pump parts, and you can like, trial putting on it,
Scott Benner 28:14
that we did one of those, like a little fashion show for them. But it's like, it's like a miniature salesman. Yeah, yeah.
Alicia Schultz 28:20
situation. Yeah. Well, I mean to that decision to make, and might as well talk to somebody in the product, right?
Scott Benner 28:28
Yeah, absolutely. When you contacted me about being on the podcast, you said that I needed to have your very direct by the way. It was it was polite. Don't get me wrong, but you were like, you need to have more people yelling kids in the podcast. And I was like, Okay.
Unknown Speaker 28:44
I don't want to argue Yeah.
Scott Benner 28:46
So what I say here all the time, like it's very easy to be on the podcast, you just have to tell me you want to be alone, or there's somebody you want to hear. And it pretty much happens like that. But but but can you tell me why you felt that way? Because you're listening to the podcast? What was it not filling in for those some had to have been something that you weren't feeling served on? I guess. So this morning, I hope they don't mind me saying this. This morning, I was talking to the mother of a little girl who lives around Atlanta. And we were talking about how we manage type one diabetes. And she said, no one's ever said this to me before. And I thought it's just so disappointing. Like, you know, new people come into the community constantly, and they hear the same things over and over again, the kind of, you know, same kind of BS, and then it's up to them to figure their way through everything to come up with this idea of their own. But where do you get that information from if people aren't constantly telling you, Hey, you know, there's a better way. And if you're considering insulin pumping, in my opinion, and based on a decade of use, the better way is the Omni pod. It is tubeless it is carefree, you can swim with it and shower with it without disconnecting. The process of putting on an omni pod is like three steps. And takes like, I can do it like a minute at this point. So your pod changes are almost effortless, and it's tubeless. So you're not carrying any large controller device on your body, you know. And if you're an adult, that's hard enough, you're sticking in your bra or jamming it in your pants. But imagine if you're a kid, and you're carrying this thing around, that's heavy and large. On the other hand, the only pot is tiny, and it's controlled wirelessly by this little device, all you have to do is pick it up and say, Hey, give me a little more bazel, a little more insulin, you know, how many carbs my eating this many push a button. It's that easy. My omnipod.com forward slash juice box, the links in your show notes are at Juicebox podcast.com. At that link, you'll find out how simple it is to get a free no obligation demo pod sent right to your house. So you can check it out and see if what I said is true. My omnipod.com forward slash juice box had to have been something that you weren't feeling served on.
Alicia Schultz 30:56
Yeah, I'm just I felt like I felt like you're that you're dealing with type one is the thing that is the way you deal with it to some degree has to do with like a your years of experience with it. But there's also an element of understanding the where you are in life and developmentally. And some of the things that you can do with the way that you deal with certain diabetes, I feel is not that you can't do it, but that it needs to be a little bit more reserved, maybe with a little kid, it's a little and there's an element of some of this stuff that he doesn't understand. He didn't understand what's going on what was happening to him. And so you can't really get that by in waiting, or something like that. And so I just, I feel like I'm kind of flexing on that this morning. Because like, I sent that message at one point in time. And as we've grown and changed in my kid has grown a little bit since then. Because when they're little they grow so fast.
Scott Benner 32:17
So if you would have thought to reach out to me today for the first time, would you have had the same feeling?
Alicia Schultz 32:26
Um, yeah, just a little bit. Okay. Maybe I wouldn't have felt as strongly about it. But maybe it's what I'm hearing that I reached out at that time, just because, like, and you have had some people. Right, and so well, here,
Scott Benner 32:40
here's what I'm hearing. It's you It's not me. No, I'm just kidding. So
Alicia Schultz 32:47
everybody's gonna take their, you put it out there, but people take can take from it, what they what they need. So I think there's thing
Scott Benner 32:53
Yeah, I think there's two different thoughts here. Like, in my mind, when I'm listening to you. The first one is that everything's more difficult with a younger person for for a couple of obvious reasons, right? Like, you can't always count on them to eat what you expect them to eat. It's difficult to reason with them, you know, putting a bunch of insulin in somebody's you know, putting two waffles in front of them. Pre-Bolus ng for it. And 10 minutes later, having a two year old look at you and go I'm adding these waffles would make you feel like yeah, jumping out a window. And and, and so I get that, like, that's definitely one aspect of it. And the other aspect, I think is, but but I think the rest of it is this is that So from my perspective, I know your life with a two year old but you know, or somebody's life with a two year old with diabetes, because I've had it before. And my thought is my contention is, is that if you're not careful, you could get stuck in that fear and anxiety. And so, I see myself as someone who's 50 100 yards ahead of you on a long dark path. And even though I'm pretty far ahead of you, and you don't have a flashlight, I keep waving my flashlight at you yelling Hurry up, catch up, let's go get up here. And and trying to drag you from where you are to where I am. Because if I don't, I feel like you're going to get stuck back there because that's what happened to me. And so while there's probably not, there's probably not an apples to apples way for me to say this is how we deal with Arden and I can apply it to you as a two year old. Although I think a lot of it applies. I think that my bigger goal is to just sort of be the person off the head that you go I wish I was doing it like that. Like how do I get to that that looks possible. That guy I've listened to his podcast he seems like an idiot so if he can do it, I probably could do it too. And and like to give you that feeling that it's possible there is a place you can go you can get to it. And if you're if you and I'm here like Come come meet me at it's not just some random place in the up ahead that you can't imagine. So I don't know if that makes sense.
Unknown Speaker 35:00
Sound good? Yeah.
Alicia Schultz 35:02
I think that's why some of I've been reflecting on sending you that message and into now. And I wonder if some of it isn't like I've contemplated whether some of it is like, like, the fear that you talk about it the fear of doing it. But and so that's why I was like, I don't know that I would put it forward, probably, as I had to from that initial message. So I have a very direct,
Scott Benner 35:37
use the word need, I was like, Okay, I'm sorry, I'll do it. But you're also delightful. So I, it's not like you were yet like, I want to be clear, I didn't feel like you were attacking me. But you were very much I could feel in you where you were with your diabetes, by the by the tone of your note, like, basically, what you said to me was, you have to let me come on the podcast and explain to me the stuff I don't understand between what I know and what I want to know. And if I, if I told you in that email that the rest of its just time and experience, that's not a very satisfying answer at that time. But it's true, right? You're starting
Alicia Schultz 36:16
to feel that you have. Yeah, there's an element to have, like, I process things verbally a lot. And so sometimes just having somebody else to literally talk to sure, a Can I can be helpful for myself. Okay. And so there's a selfish reason of like, okay, maybe if I have this conversation, that it will benefit me in some way?
Unknown Speaker 36:42
Well, we have 25 minutes. Let's have the conversation.
Alicia Schultz 36:46
Yes, let's go to like a lot of people find the podcast and find the Facebook groups and stuff pretty early on. And they're, they're in a they're in a time that I feel pretty freshly remember, and I think it is also useful for people to hear the stories of other people going through that. Like, and not having it be so far behind them. Right. But you know, there's, there's because there's the, the emotional aspect of diabetes and know a lot of you like, you can't be emotionally tied to it, but it is definitely early on. It's Oh, yeah. Very hard to remove yourself from it.
Unknown Speaker 37:39
Absolutely.
Unknown Speaker 37:40
Oh, you're 100% of that. I think part of it.
Scott Benner 37:42
No, I think so I think what you're what you're bumping up against and what I what I it's this thing that strikes me all the time. So this podcast is now I just got like a Facebook message. The other day is like, this is the anniversary. So it's like three years old. We're, you know, you and I are recording little one day end up being like 100 and 80th episode of it. And it's already got like, 150 out. And so my one like issue is, is this like, I think that what I do, I do pretty good. But my brain doesn't work in a real like, like, like a clean order. If it did, I probably would have done the first episode about this is what happens when you get diagnosed. And then this is I would have done something in some sort of, like reasonable order, which as a researcher probably makes a lot of sense to you. But the funny thing, yeah, but the funny thing is the stuff I figured out about diabetes is because my brain doesn't work like that at all. And so yeah, it right. And so what I think I've come down to is, if you really, if you really want to get something out of this podcast, you just have to listen to the episodes. And very slowly pieces will come together. And stuff will start to make sense. If you're looking for someone to put it in order for you. I'm not the guy. I can't do that. But the problem is your hospital tried to do that didn't really help you. Yeah, right. And so it's my expectation that these conversations are the path to it. Now, I will say this, I do have a plan to sit down with Jenny Smith again, the CD who comes on once in a while. And I want to do like a basically. So you were just diagnosed with diabetes episode, something like a primer to get you going. I do think the podcast needs that.
Alicia Schultz 39:28
Yeah, yeah, that would probably be helpful. Because the other thing that was very kind of difficult in the beginning is I I did start looking at some podcasts. And like, I don't listen to music. I only listen to podcasts now. And I found your podcast very early on. And I was hearing all this stuff and I'm like, this is possible. We need to just do it. And I was like, hold on. Like let's slow down. out there.
Unknown Speaker 40:02
But see ya.
Unknown Speaker 40:02
Let's see, I'll tell you how great that makes me
Unknown Speaker 40:04
feel the primer
Scott Benner 40:06
would help. But he's so having a primary would help you think?
Alicia Schultz 40:11
Yes, I think it would okay.
Scott Benner 40:12
I actually do, too. I just I tried to imagine me for an hour staying focused on one idea. But that's but But see, the funny thing is though, is the way you felt after you listen to it, that was my goal. Like, I want you to feel like I can do this. This is possible. There's a thing out here that happens just because I don't know about it doesn't mean it doesn't exist. Because I think that is if I can be critical for a second of people who share online together when something doesn't work for them. And this isn't even me, you know, I should make it a bigger thing. Our minds tell us it. I figured this out, it doesn't work. And so when when your brain can't figure something out, your expectation is it's because it doesn't exist. Right? Like very few of us. Yeah, I'll tell you there's one thing I there's one thing I realized about myself, I wrote a parenting book along like a few years ago. And while I was reading, writing it, I recognized about myself, that one of my favorite things to do is to get to the very edge of what I understand and just sit there in that horrible feeling like there's more and I don't know what it is, and try to imagine what it is. That's weird. And I don't think a ton of people do that. I think a lot of people get to the edge of what they can understand. And they imagined that this is the edge, this is the end of what there is to understand. And so I don't know, that's a very strange way of saying that. That I think that that's what happens to people, I think that they have an experience with diabetes, it goes a certain way it happens again, and they think oh, and then they say those words that make me mental. Oh, that's just diabetes. And that's not just diabetes, you can eat pancakes without your blood sugar going to 350. If it's going to 350 you just don't know how to do it yet. But if you get stuck thinking that it's not possible, then I feel like I lost you. And so while you're busy messing around, and it's not going well, what I want to do is give you the feeling that no, there there's an answer here. I just don't know what it is yet. And maybe this person can tell it to me, which makes it feel more hopeful and less impossible. I guess that's my goal.
Alicia Schultz 42:22
Yeah, yeah. Pancakes is a great example. Because we have a tendency to like going out for brunch. And kicks her off as part of that, and probably tried to figure out like, the same place gets, we probably tried to figure it out, like 20 times, at least. And it we still don't have it right. But if we didn't get it right, for a long time, I think out of because it was it was like a, b, we know roughly, it's probably this many carbs. But we still, we're bolusing for it. Like we would still only propose for like 20 of the carbs or so. And like you're setting yourself up for failure in hindsight, right. But at the time, it was like, given him this much. And up front, this is scary. What's going to happen? I don't know when we're out in public and like what yeah, it's just that fear. And until we started just being like, Don't let's try it. Right, right. Let's, you know, what are we comfortable with trying? And let's try that. And
Scott Benner 43:32
foolish I am telling people all the time that will sit is first let me go back first, you said something really interesting. You said so you know, it's probably X amount of insulin, but you use less. The funny thing is that after you consciously use less insulin, when the blood sugar goes up, you never go back to why I didn't use enough insulin, it's always something else. But must have been diabetes. pancakes are hard to do. People do that stuff all the time. You actually they take you know what I mean? They take away the reason and then don't go back to saying Well, that was the reason that's fascinating to me. The second part is
Unknown Speaker 44:06
it's
Scott Benner 44:08
it's exactly what you're saying. It's like, it's just that fear like that, I'm going to do the wrong thing. And it's going to go be it's gonna go horribly wrong. But the truth of the matter is, is that in almost every situation, when your blood sugar is high, if you stop and think about it, you later give more insulin. It just belonged up front. That's all like it, just you you know what I mean? And after you see that a couple of times, it's how you get to this very convoluted sentence that I speak a lot on the podcast, which is you have to believe that what you know is going to happen is going to happen. You just have to if you don't believe that you're screwed, you get hacked, you have to believe it, you have to go I know that if I don't put this insulin in right now he's going to get high. And later I'm going to have two more units to bring it back down. So Damn it, let's just do the two units right now. If you don't, if you can't do that, you'll be lost. forever.
Alicia Schultz 45:01
The only I think the thing that makes it harder for, like parents of little kids to do that, is that with little kids, especially honeymooning kids, like, you could do the same thing. And it can go haywire. Oh, sure, for whatever reason watching, you know, and so there's an element of like that, that is reinforcing your learning. Like, you don't have that reinforcing. Because it, it can go totally opposite. Once the next time. And we've, this is one thing we've kind of seen recently with Charlie, I almost feel I don't know if he's, I think he's still hunting, moaning because he still, I think has comparatives his numbers to some other people, maybe I don't know. Um, but we have times where all of a sudden, out of like, everything will just not work, or everything will just suddenly, way over work. Yeah. And you're just like, why is that? So that's,
Scott Benner 45:58
that's so I hate to say that that happens. But that happens. And so then that's how you have to be fluid and know how to address it afterwards. When I was 10 years old, I was playing Atari. When Elizabeth forest was 10 years old, she was being diagnosed with Type One Diabetes, and beginning to hatch a plan to create an organization called dancing for diabetes. And today that exists. So while I could never figure out how to get through the opening gate in zaxxon, Elizabeth figured out how to help children with Type One Diabetes through dance, find out more about it, scroll down, see some of the pictures at dancing for diabetes, calm, dancing, the number for diabetes.com you have to be fluid and know how to address it afterwards. Arden had a stretch just yesterday, where she was just on the low side the whole time. And so she had to go work out last night. She does like it's, I don't know, it's exercise. I don't know what you call it. Because I don't do it. But it's where people move their bodies really quickly for for not a sporting reason to be in better shape. Let's call it that. And, and so she, I don't I don't like to think about it. It makes me upset to think about sweating. And so she so she does this thing. And and so I'm like, okay, she's been on the low side all day, which means that everything I've Bolus I've had to give her lessons on for and she's still hanging it like 85, you know, so I'm like, there's a meal she ate that I was that in any other regular situation would take eight units. I only gave her four and a half. And she was still like 75 for a while after it was over. And so I'm like I said, I wasn't home. And I said to my wife, I'm like, Look, this trainings coming up. Let's do a Temp Basal decrease of this much blah, blah, blah, right? It's gonna work. And it was working great, except that it was also the end of her pump. And none of us were paying attention to that. So last night at like, I don't know, if it was like 10 o'clock, my wife goes, Oh, God, we have to change our pump. And I was, Oh, all right. And then that's when we started paying attention to the fact that this beautiful like 75 blood sugar that had been existing for the past seven hours, all of a sudden was turning up, because all of a sudden, her pump was kind of done, it was cooked and it wasn't delivering as well. Plus, I scaled back the basal rate. So I did everything right. And then I got this spike. And I was like, Oh, so he put the new pump on. And I bolused for the spike, considering the new pump. And I did exactly what I knew what what in the most times was going to take it insulin wise except I forgot to take into account that she had been so like whoa for the last eight hours. And super sensitive right. And so, so what I so I forgot about that because I got aggressive with the spike the way I should have been, except I should have been less aggressive with the spike. And, and that's a lot to think about. And I had had a long day I was out for like five hours doing a ton of driving I came home tired, it just didn't occur to me right away. I did the bolus, and it came back to get me because at one o'clock in the morning or two o'clock in the morning, she was like 55 and she was in that she was in that 55 that it didn't matter what you did wasn't gonna stop being 55 and so, got her juice, shut off for bazel did all that stuff. And I was up until I know exactly what time I close my eyes for 17 in the morning. And that's when I got her to 75 diagonal up and I was like oh this is gonna I know this is okay now and so I didn't know which I didn't over trade it. And I was comfortable leaving it like 64 for like an hour while it was working itself out. But I did stay awake and pay attention to it. But it all goes back to I did the right thing. I didn't consider all of the variables. But I'm but I'm still not upset with that. Because I would have rather been 64 for an hour 55 then to 64 then taking a while to go back up then for me To under treat that spike and for her blood sugar could have been 250 all night. I just I steadfastly stay by. I stick behind my words that I would rather stop a lower falling blood sugar than fight with Ohio. Yes, you know what I mean? And Susan
Alicia Schultz 50:14
and I early on had fights. Because he wasn't listening to podcasts like I was.
Scott Benner 50:23
It's not his fault sources.
Alicia Schultz 50:25
Yes. It's interesting, too. So, um, well, I've a couple things. First, you talk about the the pump being like on his left leg, it doesn't deliver as accurately or something.
Scott Benner 50:40
It's the infusion. So it could happen with any pump like sometimes bank, it's oversaturated. Right. Right. It's like, yeah,
Alicia Schultz 50:47
and then what do you find? Do you feel like there's like almost a insulin absorption over time? Sorry, this is very scientific way of explaining it. Is this the way I think, like, the first day of the site, you find like it over works. And then like, the second day, you kind of have like a midpoint. And then the third day, usually it's starting to decrease and like, it's absorption.
Scott Benner 51:12
I don't Yeah, I think the first day is an overworking I think of it as in a perfect world. This is how it would work all the time. And so right, and then it devolves as as it goes along, because the site gets, it gets saturated with insulin, or maybe you're using the same sites too frequently, or whatever it ends up being. And it doesn't always happen, by the way, some pump sites like cruise the whole time. And
Unknown Speaker 51:36
but but when like, why do I need to change?
Scott Benner 51:38
Right? Yeah, like, there are, you know, there's times like, I'm leaving this one on forever. And but but there's, but there's also spots where as, as you're getting to the end of that third day, and you're starting to get diminishing returns in the insulin, you have to assume, I always think, Well, you know, of course, that's happening. Because, because trust me as low as harden was last night, she continues that trend today, she's at three right now. And so it wasn't my like slight Temp Basal decrease that caused the spike it was that combined with the the life of the pump ending, basically, yeah, so because it, you know, it just is, but there are times when, you know, there are times when she's not on the low side, and this is actually art. And just I know this is as good a place as I need to say, Arden just started getting her period. And this is her first time with it. And to be honest, so far, what I'm noticing is that her blood sugar is super simple to take care of. It's very stable and low with less insulin so far during during the cycle, so
Alicia Schultz 52:45
give it a couple of weeks. I'm sure it'll be horrible in two weeks.
Scott Benner 52:48
Yeah. rustling, I mean, I'll find out but but I still think the goal is to just
Alicia Schultz 52:52
to get some parts of like hormone over a cycle. I'm just gonna be very excited. No, you're not gonna do that.
Scott Benner 53:01
Well, I mean, you're, you're in a lab somewhere making better hormones or something like that. So just send them over. But, but you know, like, but my goal is I'll just stay fluid and I'll figure it out. And and I think that the expectation that your diabetes is always going to be perfect is ridiculous. Like I saw somebody the other day talking about, they're trying to get their basal rate just right. I'm like, that's a fool's errand. Like, it just really is. And I know a woman I spoke to recently who bought into the idea of like, Look, just set a basic basal rate and then use Temp Basal, because think your body changes all the time. Why would your basal rates not change? pretty frequently, she got yelled at by or endo. And then she pushed back and she continued to do it, the endo gave up and she's having good success with it. You can't but I see other people who are like, as soon as I get all I have to do is get these bezels right, and then everything's gonna be okay. You're, you're fooling yourself. If you think that's gonna happen, you're gonna get those bezels right, and then something else is going to change. They're going to be wrong again, you spent your whole life trying to do this, because why? because someone told you there's basal rates the pump, you have to get them right. Just get them about right. You know, it's, I don't know. It's sometimes I think people focus on the wrong stuff.
Alicia Schultz 54:13
Yeah, he just simplified his early bazel programs. I think. Maybe because my husband is working with reading sugar surfing right now. Okay, um, and do they tell you to do that
Scott Benner 54:23
sugar? I've never read sugar seven. Do they tell you to do that and sugar surfing?
Alicia Schultz 54:27
I think he just said he said to set like one bazel written just looked at.
Scott Benner 54:32
Like, it totally makes sense to me. And then just the joy attempts.
Alicia Schultz 54:35
So now we have like, two different different rates. And it seems to be it seems to have helped a lot of not all of the things that we're we're noticing we're being a current chronic problem.
Scott Benner 54:51
Yeah, I do have an overnight rate that's lower than the day rate but not by a lot. It's just what I figured out works. Yeah. But you know, for the most part and just adjust if we have to adjust. I
Alicia Schultz 55:04
think it was an epic my husband just told me read something that like the pancreas research accuracy of this, but the pancreas on average puts out for like a normal person puts out bliss type insulin like 11 times a day one, okay? Like it just will dump don't insulin, you know, like, like Bolus for feels like 11 times a day for an average person,
Scott Benner 55:27
like take care of body functions, maybe with extra? Yeah,
Unknown Speaker 55:30
yeah, well, that's just like,
Scott Benner 55:33
that's why I'll tell you that, what I'll do is if it's a carb heavy meal, I'll just randomly double her bazel at the be, you know, near the beginning of a carb heavy meal, because it just makes sense. I think I call it carpet bombing with insulin one time. And somebody a lot of people really like that I've seen it online now talked about that way, just the idea of like you're trying to, there's this area of time with these heavier carbs. And it just makes sense to up the bazel rate over that space.
Alicia Schultz 56:02
We see that a lot too, because with protein and fat as well. And it's kind of impressive, I forget who the guy was a guy that just got released with the four year old. And he talked about how he thought he saw it like, hours later, or something. And we see that too. Like, there's something with kids and the way that especially if it's like a big meal, and he's eating protein and fat, like we can see will just be sometimes just especially if it's dinner, which is all night long, he just gets an increase Faisal, just because the fat, there's, yeah, it's just it lasts longer than I would expect. And
Scott Benner 56:46
actually, it's just something about the digestion, that the fat keeps the carbs sort of in your stomach in your system longer, I guess. And yeah,
Alicia Schultz 56:54
I wonder if it's acid with like digestion and sleeping, that digestion is like slowing down because other stuff is happening. Or if it's a combination of little kids, they're also doing so much growing when they sleep. Even, you know, like, even outside of a growth spurt, like the things that are happening when you sleep they sleep for so long that maybe that biochemically whatever is happening requires or basal insulin so interesting. The
Scott Benner 57:19
minute Arden goes to sleep or blood sugar starts to go down because she relaxes and then she doesn't need like, you know if she's doing her homework, and she's kind of amped up for homework or something like that. The minute that and I don't want to call it anxiety. But the minute that extra stuff you're thinking about goes away, her blood sugar tends to go down. Just like it goes down at the end of the school day.
Alicia Schultz 57:41
Yeah, mealtime insulin will wear off. And then he'll slowly tick up. And then like, even now we change his bezels. So that now an alarm isn't going off, they're not going as high. He's not going out of range, you'll still wake up in the morning, and I look and he's had, you know, a very nice, lift up, and then a drift back down.
Scott Benner 58:07
And it doesn't get before it comes back. Where does it go back to?
Alicia Schultz 58:11
Um, well, we target 140 we don't want it to go. Our range is like 100 to 180, although we don't like retreat a low unless he's like, below 80. But we might we might give him like a little like, and it's bedtime kind of thing. It kind of depends on the time of what's been going on. And what we think is gonna happen. Of course, sleeping is one thing versus is napping and I'm awake. And he's expected to be woken up because we also very much value sleep in our house. Like it's very important, or else. And so that's part of it.
Scott Benner 58:57
You're trying to accomplish that. No, I know, I got I got so tired the other day. I was just like, it was like three o'clock in the afternoon. And I said I'm gonna go lay down so I don't die. And yeah, because I just, I got cloudy. And I was like, I don't even know what's going on. Anyway, I just got done being sick. So I'm still kind of like battling back from that. And I was just like, I can't I can't I have to, I can't, like, lay down. So we're kind of at the end. Is there anything else you wanted to bring up or talk about?
Alicia Schultz 59:28
Um, that's one of the other things is, uh, that we, my husband and I have, like, very, very cutely fathers are awesome. I mean, he's not a toddler now, but when he was two and trying to get him to understand early to understand diabetes. He we, we, we, you know, you give some kind of kids terms. Yeah, one time he referred to getting his insulin shot as insulating And so we've started a website called insulating that calm. So it's insulin, and then an extra n.
Scott Benner 1:00:10
What are you blogging there? What are you doing with it? What are you doing with the space?
Alicia Schultz 1:00:14
Yeah, we're blogging there. Right now. Basically, the main thing that's on there is Charlie's diagnosis story. But we're hoping to, we have a lot of other content ideas, but we'll probably do some blogging. Part of the reason I microphone that I'm speaking on was a gift was that we are doing our own podcasting in the future as well. Okay. Um, but yeah, so that's kind of our goal, because we do feel that there's a lot of room within the type one space to have more and more voices and or just ideas out there of how to tackle a lot of this stuff before So
Unknown Speaker 1:01:01
no, absolutely.
Alicia Schultz 1:01:02
I guess. The only other thing I want to say is that I do have another child and that I was pregnant with him when Charlie was diagnosed, like very early. So I essentially have children and you know, diabetes early it's just kind of that's that's a whole lot that we could probably talk
Scott Benner 1:01:23
and that other kids
Alicia Schultz 1:01:25
about, about the Yeah, having a second child and worrying and about are they going to get it but I you've had a lot of people talking about that and trial that and stuff. So it is a
Scott Benner 1:01:35
it's definitely something that gets I still my son is going to be 18 in a couple weeks. He's done trial that he does not have any markers for type one diabetes. And still if he gets sick, I stared. I'm like, Oh, my God, is he going to get diabetes? So have you?
Alicia Schultz 1:01:49
Have you picked this finger?
Scott Benner 1:01:52
Check when he was younger and asleep on sia, because he was coming home from school and using the bathroom a lot. Ah, and so yeah, when he was asleep, we did it. He doesn't know he did it? I don't think so. And that was it was a long time ago, actually. But yeah, but um, yeah, I have other than that. I mean, I don't think about it often. But when he gets sick, sometimes it creeps into my head. That's for sure.
Alicia Schultz 1:02:20
Yeah, there was so much with Charlie. But I see it's hindsight. That now if anything remotely similar to that happens with Sam, I'm like a type one developing. But I haven't I haven't checked you know, he's only like, seven months old. Right?
Scott Benner 1:02:36
Well, what's open never happened? Yeah, but I really appreciate you coming on and and while and telling me you were coming on but and so. But, but uh, but it was really it was really great to take the time and do it. I know. I had to push you off because I was sick. We were supposed to do this like a week or so ago. But I I got so sick the night before. We were supposed to do this. That the day that we were supposed to do this. I did not like get out of bed. I just and i that is not me. And I was in bed all day. And the next day. I was racking so I appreciate you being flexible. And
Alicia Schultz 1:03:08
I guess we had it wrong. Did you guys this year. Yeah. Yeah, that was crazy, too. Like Charlie got his first next second stomach book ever in his life. And how fast ketones developed was crazy. Even without blood sugar being crazy. But then afterwards the recovery he was so insulin sensitive. We had meals we didn't even he didn't need insulin far. Yes. He also didn't have a lot of appetites who wasn't eating. So they're just basically there wasn't enough. Even you know, we would just not dose and if he happened to go up later we though, but because we were just we actually started actually using because of that happening. Okay. He did something. work faster. Yeah.
Scott Benner 1:04:02
Okay. Well, really appreciate you coming on. Thank you. Hey, guys, if you want to check out Alicia's blog gets an insulating.com i n s Ul INN i n g. I think that's how I learned how to spell Mississippi Am I SSIS si PPI i en su li n n i n g. Okay, it's not quite the same. Thank you. Thank you. Thank you to Omni pod and Dexcom and dancing for diabetes. Without them the podcast doesn't exist. So please hit the links. If you end up getting a demo pod from Omni pod or checking out the amazing g six CGM where if you get involved with dancing for diabetes, let them know you came from the podcast place. Also, I just saw all the great new reviews and ratings of the podcast on iTunes and I really appreciate it. Lastly, before I go and bazel snoring in the background, so please put up with me if you hear that. Since we did some shout outs at the beginning of the show. I want to do a couple more because there are people listening All over the world and I didn't know if you knew that. So a bulk of the downloads, of course do come from the United States, I think followed up by Canada is pretty much the second largest group of downloads. But then would you imagine Where's next? Australia. There are also listeners in Brazil, Peru, Colombia, Mexico, Argentina, Chile, South Africa, Algeria, Zimbabwe, Kenya, Ethiopia, Egypt, Saudi Arabia, Iraq, Turkey, Romania, Ukraine, the UK, Poland, Germany, France. Actually, the UK has got more than Australia. Come on Australia. Catch up. You know, there are people listening in China, and Japan, and Russia and South Korea. So if you're one of those people in the Philippines downloading podcast, you are totally not alone. You are so not alone. Because there's even someone listening in Iceland. I can't thank you guys enough for finding the show. And for sharing it. I am fairly certain it would not exist in Iceland, if it wasn't for you guys. So please, if you find the show, rewarding, share it with somebody else. Have a great day. I'll see you next week.
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#180 Monica Is Woke
#InsulinWoke
Monica is eighteen years old and has been living with type 1 diabetes for many years. One day she heard the Juicebox Podcast and things just started to make sense.
You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Alexa - google play/android - iheart radio - or their favorite podcast app.
+ Click for EPISODE TRANSCRIPT
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 0:00
Hey everybody. Before we get started, I want to share a little bit of exciting news with you. The Juicebox Podcast has surpassed one half of a million downloads. Thanks in part to you and Basal here who normally do that again, Basal.
Unknown Speaker 0:18
Basal that annoys Thank you.
Unknown Speaker 0:24
Are you thought?
Unknown Speaker 0:27
No, don't keep going, stop.
Scott Benner 0:30
Okay, go back and wait. Anyway, half a million downloads, right? It's exciting. We should have some sort of a celebration. Okay, now that we've celebrated I'm sorry. Now that we've celebrated Welcome to Episode 180 of the Juicebox Podcast. Today's episode is called Monica is woke. And it covers a variety of Type One Diabetes subjects I'm actually really excited about you hear in this podcast episode. I know I say this a lot. But I think this is the best one that I've ever done. Please join me in thanking Omni pod dex calm and dancing for diabetes. Because you know, they're sponsoring this episode. It's because of dancing for diabetes, and Dexcom, the makers of the G six continuous glucose monitor and the pod the tubeless insulin pump that Arden has been wearing for well over a decade. It is because of these fine companies that you are getting to hear this episode of the Juicebox Podcast absolutely free to you. Please consider clicking on the links in the show notes at Juicebox Podcast comm and finding out more about these wonderful, wonderful, most excellent advertisers. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. And always consult a physician before being bold with insulin. That's enough of me yammering on here at the beginning, you know what to do. Go support the sponsors, find out more about them. Help me out, click on the links. But don't do it just yet. Do it in about an hour after Monica talks about her life with Type One Diabetes.
Monica 2:12
My name is Monica. I'm 18 years old. I've been living with type 1 or seven years now.
Scott Benner 2:20
Let's say you were 11 years old and you were diagnosed. Yeah. So this is going to be an episode everybody where I don't realize that I'm old and I talked to Monica like I'm 18. And then she just stares back at me because I say I sound old to her. The people who listen, then you listen Monique, right? You know what I'm talking about? Like sometimes like little kids and I'm like I feel young still. And then they're they don't understand anything I'm saying. So you reached out to me through Instagram. Yeah. And you said something that instantly captured me and made me want to have you on if you were interested because you you receive the show when you're listening to it the way like at my core, I intend like in my mind, we're talking about how insulin works like that. That to me is the core of what the show is. So yeah, you just you captured me right away with your message. I was like, Oh, I hope this I hope this person would want to come on if I asked them. So thank you very much for doing that. I
Unknown Speaker 3:16
appreciate it.
Unknown Speaker 3:17
No, I really I just thought it would be really fun. Oh, good. Good. Well,
Scott Benner 3:20
we'll see about that. Let's see if we can see if we can keep up your expectations. So tell me a little bit about being diagnosed just in 2010 at 11 years old, because it's an interesting mix your pre puberty probably.
Unknown Speaker 3:32
Yes.
Scott Benner 3:33
not expecting to get diabetes, I'm assuming
Unknown Speaker 3:36
Definitely not. Right,
Scott Benner 3:37
right and right at the beginning of the CGM technology, so I'm interested to see like, so give me a little bit of your story. How do you remember?
Monica 3:45
So I was diagnosed, I currently had the flu at the time. And I just remember being really sick. And I guess I went to the doctor for physical. My mom was watching the dr. oz show. And he said that your children should be getting physicals and my mom decided to put us all in for physicals. And they called us back the same day and said that, you know, your sugar content was really high in your urine, like we want to retest it. And then I get a call back and told my parents but they didn't tell me. They waited until we had the doctor's appointment, so I wasn't hospitalized or anything. They just took me in for an appointment and I was there maybe for like two or three hours just going over everything. And I was on shots for about first four years of diabetes. So I didn't give anything different than that.
Scott Benner 4:31
So you didn't want the way to that doctor's visit. You didn't know why you were going.
Monica 4:34
I did right before we left. Oh,
Scott Benner 4:37
favorite like yeah, they just do you remember it? Was it in the car going out the door? How did they handle it?
Monica 4:44
I think I was in my parents bedroom. I don't remember it too. Well, I don't really remember that year too well, right. And it's kind of foggy to me and my memory but I think I just was like sitting down and they're like, Oh, we have to tell you something like you have diabetes and I didn't believe them. So it was just really odd. I didn't understand what it was
Scott Benner 5:02
right. And that's such an interesting thing too. Because there there are two people who I'm assuming didn't quite understand what what they were telling you that you even had, right? Because, yeah, on day one, you're just like, Oh, now I take insulin, and then you realize there's so much more to it than that. But Wow, that's, I have to be honest with you. My arm was too. So we didn't have to articulate too much to her, you know, at the time. But as I was driving to the hospital with her, it was maybe, you know, I'd have to say it was one of the saddest moments of my life, like just, you know, going driving to the hospital knowing what was going to happen when we got there. Yeah, I can't imagine how it fell for your parents. Unless, unless you're like, their least favorite kid or something like that.
Unknown Speaker 5:43
No, I wouldn't
Scott Benner 5:44
know what your brothers and sisters?
Monica 5:46
I do. Yes, I have an older sister and two older brothers.
Scott Benner 5:49
And would you consider that you're probably the favorite.
Monica 5:51
I mean, I think my parents would want to say differently, but I would like to think I'm the favorite.
Scott Benner 5:57
My my wife, sister introduces herself as mom's favorite child. And then they all start doing it. And I'm like, I'm pretty sure none of this matters. So okay, so you There you are, you're at the hospital, you you know, you're there to be told you have diabetes, you don't really believe it? When do you think you believed it?
Monica 6:16
Um, I think when they probably when they first pricked my finger, and that was when I things got really serious. For me, I was like, fighting it, I just really did not want to do it. Right. And that was probably the like, defining moment. That's like, the thing I remember the most about that day was just really not wanting to break my fingers. It was gonna hurt really bad.
Scott Benner 6:38
And you say you don't have a lot of recollection from that year. Are you generally a person who has memories? Or is this specifically this one year just kind of eludes you? Or do you not remember a ton about when you were that age?
Monica 6:50
I have a pretty good memory. I just think back to that year, and I think I acted a lot differently than I normally would have. I know my mom's told me that she wasn't even like, she would tell me she didn't know me because I was just acting so odd, I guess. But I just really can't I really struggled in school that year, it was just like, everything was just a blur for me.
Scott Benner 7:10
Do you think of it? You're the process of figuring out the diabetes in your blood sugar? Was your blood sugar bouncing around? or How? You know what I guess the next question is? What did they give you leave in the hospital? Were you injections pumping?
Monica 7:24
With injections? Right from the start? I haven't. I didn't switch over to a pump till about two years ago. Okay. So it was all me.
Scott Benner 7:33
And testing, just with some time thinking seven years ago with some not bad meter, but a meter. Right?
Monica 7:40
It was the one time Yeah, it's one of the older one touch meters.
Scott Benner 7:43
Okay. And so, how did that so you get 40? There's four kids in your family? And that's a lot of parenting. So 11 years old? Do you remember? Was it kind of all thrust on you? Did you share the responsibility with your parents? Did they do it? You didn't do anything? Do you remember what the division of labor was for diabetes and,
Monica 8:02
um, for me, I feel like it was mainly me, it was very like, um, you know, it's coming of age, I once I started taking insulin, I mean, I hit puberty immediately on my hormones, but it's coming in at once. Um, it was a very personal thing for me, I wanted to be in control of it the whole time. So I really didn't let my parents helped me out. But I have this older sister who's epileptic, so she took up a lot of my parents time as well. So I think it was really hard for them to spread themselves out over the both of us. Yeah, so it was mainly me, I was in charge of my diabetes, which probably wasn't a good thing, in retrospect, but it was mainly me,
Scott Benner 8:42
I get that though. Like, I'm sure your parents were probably using up a lot of their free time trying to decide which one of them was going to get to abandon the family and run away. And so we'll flip for it. And one of us gets to leave. What do you think? It's hard, probably at 18 to realize, but you know, when you're, when you're making a family, you don't usually think about the things that might go wrong. You know, you think about the things like, oh, we're gonna do this, it'll be that at Christmas, we'll do this, like, you know, like, you have these thoughts. And, and then when really kind of unexpected, lifelong things pop up it is, it's, it can throw you off a little bit. And I don't know how well you'd remember that time. Maybe you were just like, hey, let me do this. I'll do it. And maybe your mom just wasn't ready for it to like maybe, or maybe somewhere in the middle, you know, but I don't I'm not a person who believes that an 11 year old should be managing a chronic illness on their own like that. So you know, like, like, it's not gonna I don't let me say this. I'm sure that they can. But I think generally speaking, it would be difficult to have a ton of success that way because
Unknown Speaker 9:53
it's just did not have.
Scott Benner 9:55
Mark. It's like there was no success. By the way, Monica. I'm strongly considering the Episode title here, Monica, a coming of age story, because you said I was coming of age and I was like, Oh, that's delightful. Did you know that dancing for diabetes provides all year long free dance classes for kids and teens with Type One Diabetes. They also host several outreach events and programs for kids, teens and adults. If that wasn't enough, they produce touched by type one, which is an educational and empowering conference every year in Orlando, Florida. To find out more. Go to dancing for diabetes.com it's dancing the number four diabetes.com there's also links in your show notes at Juicebox podcast.com. How did it go? Like were you how on top of things were you? You know, what was the what was a day like back then?
Monica 10:51
Um, in the beginning, I think I was pretty on top of it. I wasn't hospitalized. I just went to a doctor's appointment and went home. Okay. As of now, I wish I was hospitalized because I don't think that I feel like they set me up for failure almost. And I remember the first time I hit 200 I was just like shaking and I was at school and that was like a terrifying thing for me. But I'm shaking. Upset angry. I felt low out like really sick. Yeah. Okay. Because I mean, when i think i when i first tested, I was around like 700 or somewhere around there. And they just like kind of gave me insulin and we're like, Alright, you got it from here. Like, if you can figure out
Scott Benner 11:32
where do you what part of the country do you live in?
Unknown Speaker 11:35
I live in California. Okay.
Scott Benner 11:37
Northern Southern center,
Monica 11:39
Southern California. I was like, right by Disneyland. Okay. Oh, geez. Yeah, that's,
Scott Benner 11:44
I love the people in California get to go to Disneyland. Like it's the park up the street. That seems unfair to everybody else. But very nice. Do you do that? Do you just kind of go sometimes,
Monica 11:53
I am not that I work at Knott's Berry Farm. So it's kind of like it's enough competition. So
Unknown Speaker 12:01
a little plug out for the company.
Scott Benner 12:04
So I get that. So you the first time your blood sugar gets really high. I don't know that people understand that a lot of you do hear people talking about your body can get used to a high blood sugar and then all of a sudden a normal blood sugar feels low. But at the same time, but at the same token what you're what we're really saying is that any significantly out of whack blood sugar is going to feel
Unknown Speaker 12:24
strange to your body. Right? Yeah. So
Scott Benner 12:27
now you the feeling that you know is low now is how you felt when you got high in the beginning.
Monica 12:33
Right? Wow. It's so odd.
Unknown Speaker 12:35
Yeah, but it's interesting.
Monica 12:37
Yeah, I was a really secretive person about my numbers and everything. I didn't really test too often. And when I did, if my mom asked me what I was, I would tell her I was like 120. In reality, I was like, 300.
Scott Benner 12:50
So what was the 120? Number? It seemed It was good, but not too good. where she'd wonder if you were lying about it? Was that like the safe? Do you
Monica 12:57
think I just 120 to me has always found like a good number. I did. I think I would just like cut off a couple hundred and then tell her that number. And,
Scott Benner 13:06
and she just she was really trusting you with the whole thing?
Unknown Speaker 13:10
Oh, yeah. Oh, yeah.
Scott Benner 13:11
Now when your agencies came back, and they didn't reflect like, 120s, what happened then?
Monica 13:17
I'm not to throw my parents under the bus. But I don't think they really understood diabetes, as much as I did in the time. Okay. And I know, well, I would be up and down a lot. So my agency wouldn't be like, awful, it would be like eight or nine. And I think I was because I was like really high and then really low. And I think if I was consistently high, just staying, I probably would have been like 12 or something for my agency. So I think that's how I got away with
Scott Benner 13:44
So you knew enough to like, when the number got high, you'd beat it back. You'd like you'd push it back down. And you wouldn't just sit at 200 and go oh, I guess this is what it is. You were trying to you were trying to to affect what you thought was, I guess your job with your with your blood sugar.
Monica 13:59
Yeah, I would I was I would take insulin blindly. I would not prick. And I'd be like, I know I'm high right now. I'm gonna just shoot five units of insulin and see what happens.
Scott Benner 14:09
Did it ever go poorly doing that?
Monica 14:11
I never had any bad experiences at that age. I'm really, really lucky. Because I know I was playing with my life right now. Because that's really dangerous.
Scott Benner 14:21
That was happening like at school at night. At home whenever they You did all the time. Yeah. You You You gave the like, left hand up, right hand up. I feel like I'm sort of and this is how much insulin I'm going to use. And right and so and did you, I guess you kind of had it figured out a number of units that you could use, it wasn't going to put you too low. But at the same time probably wasn't as meaningful on numbers. It could have been if you had tested and know what your blood sugar was, and all that kind of stuff.
Unknown Speaker 14:50
Right? Yeah.
Scott Benner 14:51
Interesting. And listen, I listen, don't don't think of your parents as being thrown under the bus here because, first of all, we don't know who you are. And and secondly, I think this ends up being a really valuable conversation for people who may be are letting their kids go off on their own and trusting that it's going well, maybe they should. Maybe they need to pay a little closer attention or really, because what you needed in that moment, whether you knew it or not, I'm thinking is support like you needed someone to come in and like, hey, like, what would that have meant to you? The other day, I used ardens, dex calm clarity app to try to figure out what I thought her next agency was gonna be. I used the 90 day model on the app and figured out what our average blood sugar was, figured out what that meant for a one See, I got to see some trends. Take in what's been happening over the past 90 days and kind of ready myself for the appointment. And you know, to move forward, that is just the tiniest little thing you get with Dexcom, that clarity app, which is incredible. But it's not even the tip of the iceberg. That's just like the bonus. I don't know like that red sauce, they put over top of cheesecake. I mean, it's great. But the cheesecake would be really amazing. Even without it. The amazing parts are of course, the rise and fall alerts, the peace of mind that you get from knowing what your blood sugar is, how fast it's moving in what direction it's going in the compatibility for the share with Android and Apple phones, that means that a loved one, or you can be wearing your Dexcom. And then you get to decide who knows what my blood sugar is in the road? Is it my mother? Is it my best friend? Or do you just want to watch your son or daughter while they're play? or at school? How about not having to do a finger stick to make bolus decisions. In fancy terms, they call that non adjunctive. But just means you don't need to test to treat. In the end, all you really need to know is that most of the decisions that I make about ardens type one diabetes, the way I keep every one see where it is. It's with the information I get back from her Dexcom g six continuous glucose monitor, go to dexcom.com slash juice box, or hit the links in your show notes for Juicebox podcast.com. And what would that have meant to you at the time? Do you think?
Monica 17:12
Um, I think it would have been really crucial, I think when it all came crashing down on me because I mean, I eventually got caught you can't go home live forever like that. That was just like, it was like not like the end of my world. You know? And I think if maybe my parents had been there the whole time, it would have been like as hard for me, I guess. I think diabetes, for me at that age was just like a death sentence. I didn't know what to do with it. I didn't have like the right mindset about it.
Scott Benner 17:45
Yeah, well, and you should, you know, again, that's pretty fair. I mean, it elevens pretty young. So. So as you move forward, and you get you got caught you got found out at some point? What was that? Like? Did you did you have the experience of a supportive endocrinologist? Or did you have the experience of someone who tried to scare you? Or do you remember what that was? Like when they they figured out maybe you weren't doing everything you said you were,
Monica 18:09
um, I normally saw my nurse practitioner instead of my endocrinologist. And she was like beyond helpful for us. She she would have like, super long appointments with us and she wanted to make sure I was going to therapy and that I got like a full rounded um, I guess like health care because she was always telling me that like diabetes isn't just you know, diabetes, it also affects your mental health and you need to talk it out and see what happens she was not the scare tactic type of person. I think she was a very helpful like, this is what we can do to change this. And these are what we're gonna do.
Scott Benner 18:48
Yeah, take into account your whole kind of self and not just the, the numbers, your blood sugar. Oh, that's excellent. You did go to some sort of some therapy. Do you still do that? Or was that when you were younger?
Monica 19:00
Um, I don't really go too much anymore. I used to I think maybe about three years ago, I very intensely went to therapy because just diabetes burnout just really kind of can cause a really deep depression. I think for a lot of people. Yeah.
Scott Benner 19:14
Monica Hold that thought. We're gonna do Arden's blood sugar. It is lunchtime. 1120 here, her blood sugar's 112. She has told me it's pre lunch. I said, Hey, she said, Hi. I'm gonna ask her if she's hungry, and because sometimes she's not. And she will say what will she say? Most of the morning she was around 120 and we pushed her down with a little bit of a Temp Basal
Unknown Speaker 19:43
and
Scott Benner 19:44
a tiny Bolus. So I like this 112 I failed my quiz laugh out loud. She's
Unknown Speaker 19:53
got I can relate to that one.
Scott Benner 19:57
Okay, so we are going to do 10 bazel increase 30% for an hour and a half. And while she's putting that in, I got a 60 go may she's in she is in this really difficult class. It's still middle school, but we have a teacher who prides himself on prepping kids for high school. So he tells them at the beginning of the year, you're probably not going to pass this class. But he gives them so much work and notes and testing that by the time they get to high school, they think it was easy. Alright. And what else she said let's Bolus extend 11 units
Unknown Speaker 20:37
112.
Unknown Speaker 20:40
Let's do 20% now and the rest
Unknown Speaker 20:45
over an hour.
Scott Benner 20:48
So let's see what Arden's gotten her lunch today. It is a full bagel. There's a banana that she won't really eat most of she has two little cookies with two Oreos, a pack of some sort of a cheesy it ido thing I wasn't sure I don't remember exactly. She has a cup of mixed fruit with like, like no sugar, kind of pre cut, and a handful of grapes. Think that's all that's in there might be a couple pieces of chocolate jammed in the bottom in case you find some sort of a treat. So what I need to have happen is for everyone listening, because I get a lot of feedback, Monica that apparently this is everyone's favorite part of the podcast. But which breaks my heart a little bit, but I understand so. So 112 I don't think of is dangerous. Arden's going to be eating in about 10 to 15 minutes, I need the bazel to be extended a little bit because of the bagel and the sugar. And we need enough we need enough insulin happening when she when she starts to eat that if she decides to start with the Oreo, we don't get killed. And at the same time, I can't give her too much so that she's too low when she gets there in case she doesn't get there in time or doesn't start eating right away or starts with the bagel, which isn't going to really touch her blood sugar right away. And so we're trying to create this balance with the with the insulin and the carbs. And we're gonna get back to talking about that. But you were talking about something kind of serious before you said you felt like you were burning out. Can you tell me a little bit about what that feels like? Like, like, emotionally what it feels like
Unknown Speaker 22:23
when you just IV burnout?
Scott Benner 22:25
Yeah, yeah, seriously, like, because I have no, I can't tell and I don't know, like, like you're going along. I assume you're going along. And whether you're having great success or no success, you still feel like you're doing what you're supposed to be doing. And you're trying your hardest, but what happens when that shifts in you?
Monica 22:43
Ah, okay. I don't know if I'll get emotional thing. But um, I guess diabetes, burnout. It just kind of feels like defeat. Um, it mainly happens on a day, I would say when like, you try everything to be right. And it just never goes your way. I think burnout can last for a long time,
Scott Benner 23:03
Monica. That's how I feel being married. I try so hard. I feel like I'm doing all the right stuff. And then I look up and I'm like, she's still disappointing. So okay. So it's it's this feeling of, I've done everything I was told to do. I did everything I know to do. And well, none of this work. Yeah, yeah. And so it doesn't feel like I might as well give up or does it? Like, what's that next step?
Monica 23:28
I think when I was younger, that was definitely my mentality is just like, well, if it's not gonna work, if I try why try at this point. So I think now for me, it's just like, if I'm going through a diabetes, burnout, I might as well just not through it. So yeah,
Scott Benner 23:45
yeah, I think that it's so much well, but your tools are better now. Right? So maybe, maybe these nouns so we'll fast forward a little bit. Did you got a pump? You said a couple of years ago, so you're What 15 1516?
Monica 23:59
I think I was 16 when I got a pump,
Scott Benner 24:01
or using a glucose monitor by any chance?
Monica 24:03
I do. Yeah, I use the CGM
Scott Benner 24:04
Dexcom. So you so you you have a pump and you have a CGM? And is that when things started making more sense to you? Or when did when did you because you seem like to me, you you don't have the issues that you had when you were younger now so as far as understanding what to do and how to do them and like you talked about pushing through instead of getting defeated and stuff like that. But you can push through now because I'm assuming when something doesn't go your way, it's not because you just flat out don't know what you're doing. It's just because it just maybe timed it wrong or something happened, but at least you know, how to fix it again. So when did that change for you to the technology help you or was it just getting older and having more time with it?
Monica 24:46
Um, I think part of it was maturity growing up and realizing that this is something I just have to deal with. And the more I complain, it's not gonna change anything. And then definitely getting a pump was just like Amazing, I didn't even realize that I could take such good care of my sugar. With an insulin pump. I just, I think when you're doing shots, you're always like, you're always tasting, you're high. And there's no, there's no room for like flexibility with shots. But then when you move on to a pump, I mean, doing like a Temp Basal, right, you can bail on it, if it's not working for you, or that kind of help.
Scott Benner 25:24
I can't, I can't ever I don't it's hard to convey. But that was my first excitement when I realized when we start talking about an insulin pump back when Arden was like four years old, and I thought so I can like, I used to think of it as like the lever mirror, you know, the lantis. Like, so I can like Turn it up or turn it down, you know, or shut it off. Because that you ever had that everyone's had that with injections. There's this moment where your blood sugar's perfect, and you think, but I know it's going to go down here. I wish I could just tell that land has to stop working for an hour. And it really is the I think it's one of the really great parts of pumping is just the the manipulation of the insulin, the the really, it puts you in a lot bigger. I don't want to put you in control of it more like you know, it's not it's not quite so much. Well, there it is. It's a we'll see what it does. And plus you don't I talked to a lot of people who even know at this point, if I Pre-Bolus here and then waited 20 minutes and put in more insulin. I know that would do better for me. But I don't really want to inject twice at dinnertime. And I I get that you mean like I understand not wanting to just be needle even when you have a pen like some. Listen, some people don't care though. They'll hit themselves as much as they need to with that pen. But when you're 15 or 14, you're not thinking about stuff like that.
Unknown Speaker 26:43
I care I thought the day
Scott Benner 26:46
because like I'm not up for that you weren't even up for testing. And so I
Unknown Speaker 26:52
can't expect that out of me.
Scott Benner 26:55
Right away? Did it make a difference for you? Like you had an insulin pump? How you're 1516 years old, you have an insulin pump to Jabba the Dexcom?
Unknown Speaker 27:04
What? First off 16? Okay,
Monica 27:07
I didn't fit both same time.
Scott Benner 27:09
Okay, so you had him right at the same time. Okay. So that's the interesting thing, once you see your blood sugar in real time for 24 hours. What's the first thought?
Monica 27:19
Oh, no, I have to think back to this. I think first thing was peace of mind. I mean, I think I mainly use the Dexcom as when I first got it, I was just more of like an alert system, if I'm running high or running low. And I think I mean, now I use it as like a, I can catch that higher, I can catch that load. I look at more of the graph now. But I think when I first saw it was just like an alert system. And it was very peace of mind. For me, I didn't have to stress as much about going to bed and maybe like not waking up in the middle of the night or something like that.
Scott Benner 27:55
It's such a standard feeling, I think is that the first thing that people think is Oh, it'll be it'll tell me it'll stop me from dying. Or, or I'll tell or if I get really high, it'll let me know or something like that. That. It's It's interesting. You call it like alert system that I think that's exactly how people think of it in the beginning. And then once you realize, Oh, I can see what's happening. Now I can make like kind of these bolder decisions because I'm not blind, you know, to what's going on. And it's such a big deal. It's such a big deal. And then you've got the pump, you must have felt like I was gonna say a kid but you work at so you just must have been. You must have been really excited. Because now all of a sudden this thing that I guess was elusive to you was did it feel more manageable? Did it? Like what was the first thought like, wow, I can do this now?
Monica 28:41
Oh, yeah, I was so stoked. I felt like, I felt like I was completely in control of everything. I felt like a superhero with all my gadgets on me. I suppose it's awesome. Yeah.
Scott Benner 28:51
See, that's good for people to hear, especially parents of younger kids who, who who think about this stuff. And they go, I don't want my kid to feel like a, like they're tied down to something or a cyborg or something like that. Like, that's a fairly common feeling. You don't want to attach things to you. But as much as it might change one aspect of your life. And you might think of that as a negative that the positives are going to far outweigh the rest of it. You know, like just listen to Monica's voice like she's she was elated to learn these things and to be put in this situation. So and I didn't, I didn't even know we were going to talk about like this. So Okay, so first things first, you're going along, you're making better decisions, probably because you can see the Dexcom did it help you make adjustments to like bazel rates and like, were you like, Oh, this isn't quite right. Like, could you just, I guess it just it just it's like going from black and white that color, I guess.
Monica 29:42
Yeah, it really is. Yeah, I started making changes. I mean, I think kind of all throughout my journey. I guess with diabetes. I don't really consult my physician, which I mean, you should consult your physician but I mean, even when I tell them what I'm gonna do, they're like, Okay, great. Like you go do I just changed my basal rates whenever I want. And I can go in and adjust the settings and fine tune everything and just make it all better.
Scott Benner 30:08
I wish the doctors could be more honest with you, because they would say, I wish everybody would do this, because they are really just sort of waiting for you to get to that point.
Unknown Speaker 30:16
Right? You know, it'd
Scott Benner 30:17
be nice if they helped you get through it, but but they really, they understand that there's only so much they can do. Seeing you every three months and making these guesses based on logs and things you've written down. It's it's nearly impossible to look at a bunch of numbers like, Oh, I know what you should do. You know, it's, it's, it could take a year to get something fine tuned doing it that way. And you see it right in front of you can make decisions all the time. I was just talking to somebody the other day who I said, they were like, my thing was my daughter, my daughter's blood sugar has been running high. And we just switched from injections to a pump. I don't know what to do. I said, but just you know, it sounds like you don't have enough basal insulin. And she's like, well, she's a witch. I don't like Turn it up. Like, you know, that doesn't sound crazy. Does it? Like your blood sugar's high, you need more insulin, but she got so focused on the doctor said, Well, let me know how it's going. The next time we see each other that she was just writing things down and waiting to go back to report to the doctor. But that was like going to be two more months.
Unknown Speaker 31:18
You know, gonna cause too much damage by that point.
Scott Benner 31:21
It just it's you know, it's not it's, it's, it stinks because it's what you're told to do. And at the same time, it probably also was the best the doctor can do. But at the same time, it's just not the best for you. So yeah, at some point, you got to make that decision that you're going to kind of take control a little bit and just, I'm always stunned when people are like, Well, you know, I'll say something like, when I adjust Arden's bays or it's like, you know, as she's growing, and I noticed her blood sugar starting to do that thing where it's a little high, and I you know, it's always Hi, I think, Oh, it's time to change your bezels again, I just pushed them 30% and people will be like, well, where did you come up with that number to my I don't know, I guess I tried 10% one time, and that didn't work. So I tried 20% that didn't work. I try 30% that seems to work. And when that stops working, I'll try more. Because especially when you have 200 Yeah, hey, listen, there are times when Arden eats I double her bazel eat like like double it just do a Temp Basal increase for 95% up for an hour, hour and a half. Because all the time. Yeah, right? Because Don't you find that if you mix Basal with Bolus together, it's a little more effective than just bolusing.
Monica 32:28
It'll help you in the long run, like after you eat, you know, both covers the initial spike, but you're still getting carbs continuously throughout it. So going into your body.
Scott Benner 32:40
Like I just started hitting me recently that there's two kinds of spikes. There's the one that just takes off straight up. And then there's the one and this is going to be a very old reference, but maybe you still have it. Do you know the? The prices right? The game show?
Unknown Speaker 32:57
Yes, I do. Have you
Scott Benner 32:58
ever seen the game where the little mountain climber goes up the hill? And, and yeah, and that's the second kind of spike, the one where you're watching it the whole time going, it's gonna stop. It's gonna stop. It's getting real gradual, real gradual regret, just gonna stop. It's gonna stop, it's gonna stop and then it just falls off the other side. And like I didn't stop.
Unknown Speaker 33:15
Yeah, right.
Scott Benner 33:16
And I think I'm figuring out that the one that jumps straight up is probably a mixture of probably a little Pre-Bolus Miss, but mostly, it's an amount next Miss on the insulin. Like if you really undervalue how much insulin you need, then the carbs are able to jump up really quick. But if you're on one of those kind of slow, drastic climbs, that one's interesting, because that's probably that's probably a different mix of, of, they're both a mix of Pre-Bolus and amount, but it's different, right? It's more about the timing of it at that point, that slow one, if you would have just gotten that insulin and sooner, it might have gotten ahead of those carbs, maybe you would need a little more but not a lot more. When it jumps up like that, then I think you either got the insulin in way too late. Or it just wasn't enough. And and then that I think throws people off because now your blood sugar's 300. But they have this feeling in their heart, like I put the right amount of insulin in. I can't do anything about this, or I'll get crazy low later. And I don't think and then that's when I talk about like, stopping the arrow on the CGM, like you just have to stop the arrow and you can't just keep being allowed to go up like that. It had you gotten this right. This wouldn't be happening. So so you know, resolve yourself to just I'm gonna have to deal with a low later if I use too much now, but I can't let this high happen. They just it's it's so interesting. How the timing of the insulin and the amount of it is, is it's the whole crux of the whole thing. But so, so you sent me this message that just said I'm gonna find it because it's I was selling direct Hold on. Second, everybody, this is interesting where I go into my cell phone, you know, this is the best part of any podcast.
Unknown Speaker 35:05
No, no second, I
Scott Benner 35:06
think I push this button, people will make fun of me, I'm so bad with this app. You said, I have never thought of insulin, the way you explain it. And my blood sugar has never been better now. And I've adjusted to the way you explain. Thanks so much for inform me and advocate bah, bah, the pockets. How do you think about the insulin now? Did I not tell you this episode was fantastic. And we're gonna get right back to it. Right after these words from our sponsor on the pod. You want a tubeless? insulin pump? You want an insulin pump? But I mean, why just stop at that? Why would you just take a pump with tubes on it? That doesn't make any sense? Not to me at least. And I think it's possible, it might not make sense to you, after you've seen and held the on the pod 2%. So on top of that, you know how easy that is to do. You go to my omnipod.com slash juice box, hit the links, your show notes. And on the pod send you a free, no obligation demo
Unknown Speaker 36:03
pot.
Scott Benner 36:05
Or you listen to what I'm saying it's free. There's no obligation. So you just get it and you do whatever you want with it. They don't like hassle you afterwards. They're not like, Hello, Billy, you
Unknown Speaker 36:14
got a free demo pod. Do
Scott Benner 36:16
you want to buy more? It's not like that. But if you want more, they make it easy for you to get more. But that's not the point right now. The point right now is he needs to get the demo into your house and take a look. Miami pod.com forward slash juice box. The links in the show notes the links at Juicebox podcast.com. Get the demo where it put it on your child? Find out if what I'm telling you about this pump? And what do you hear everybody talking about when they talk about the pod find out for yourself. If you think that's true, make the decision for yourself. But give yourself the chance to make the decision. In the last five seconds, I'm going to tell you exactly why you need it, I'm going to be talking quicker ready to listen, some pumping is spectacular. You don't have to remove your pump to go play soccer to go in the swimming pool or to take a shower, which means you won't forget to put it back on and your blood sugar won't rock it up. It also means there's no tubes to get caught in your clothing on your belt, or wherever it happens like a doorknob. And it puts you in control of your insulin. And that's what this entire podcast is about. That's what this entire episode is about. If you're listening along to this episode and thinking Yay, I wish I was doing that too. Then you owe it to yourself to try the Omnipod How do you think about the insulin now?
Unknown Speaker 37:29
Um,
Monica 37:32
I guess I don't know. I can't even think of what I thought about the insulin. When
Scott Benner 37:36
do you know how you thought of it before? Like was it just like a
Monica 37:39
it was like a band aid I think I thought of it is like I can kind of like cover. It's happening a little bit with some insulin. But I think now I can think of it like a pre emptive measure, I can do something with it, I can make a change to my blood sugar with the insulin. I was basing it off as I heard one of your episodes where he was talking about his standard deviation of when he looks at his Dexcom and how he really pays attention to the standard deviation. And he talked a lot about how the basal rates how you can just you can bail on a basal rate if it's not working out for you. And I think that was just like really eye opening for me. I was like, you're right, you can just bail on it. And it still makes a big difference for you. It's exciting. That was really helpful.
Scott Benner 38:26
Yeah. Well, so that's that's really interesting. So and by the way, it's been 17 minutes since we talked to our nerve, blood sugar's went away and still a steady arrow. And so, and she'll start eating in the next couple of minutes.
Unknown Speaker 38:40
Perfect. Yeah. So
Scott Benner 38:40
before the insulin just felt like this thing, like, you know, some bad stuff was going to happen. And I would try my hardest with this stuff to stop the bad thing from being too bad. And and now, now you're thinking more of it like this. And I was just saying this to someone privately the other day. And I've said it here a couple of times, but I really believe in this.
Unknown Speaker 39:03
You can't.
Scott Benner 39:04
I think I think diabetes, if you think of diabetes, like a fist fight, right? Once you know you're in the fight, the person who hits first usually has an advantage. Because you've stun the other side because you're in control because because now you've put the other side on on defense, I guess a little bit. And when diabetes does something to you, then you're just defending and you're just you're you're frantically trying stuff, you know, like, oh, maybe if I put my hands up, he won't punch me in the face. Maybe if I try this, this will work. But in the end, you're always sort of on defense at that point. And it's very difficult to turn it around and put yourself on the other side. I like doing things first, because then when whatever happens afterwards, even if it's not what I expected to happen, at least I know it happened because of what I did. I did this and then this happened. So not only am I in control, but I have a right to have an understanding of What it is that I'm in control of? And therefore if it goes bad the next time, I can just say, Okay, well, you know what next time, I should probably do the Pre-Bolus a little sooner a little later, I should have added another, you know, maybe half an hour later it takes another human events and I go, you know what I could have put that unit in with the initial bolus not would have been okay, there. But once you're when you're defending all the data you're getting back is meaningless. Yeah, you do not. I mean, it's it's the data that you're seeing, because we talked about when things go right, and things go wrong, but it all kind of BS, it really is just data back. It's experiences, but that that allow you to do better than next time. And so and so when you when you when you do something first you can quantifiably say hey, I punched that guy in the face. And you know what, for 12 seconds after that he really couldn't defend himself. So if I hit him again, I've got 12 more seconds. But if you wait for him to attack you, you're always just going to be, you're just gonna always be on the wrong side of the fight. So I think of the diabetes isn't the same way like I would rather I don't know, I would rather attack and be wrong than wait. And, and so it just, I don't know, it's been a big part of how I've kind of figured this out. Because then the insolence doing what you it, I want to rephrase, it's not necessarily going to do what you want, but it'll do what you intended. And then, you know, from there you decide, I over I over explained that. But
Monica 41:32
so so go here offensive with diabetes. I know. I totally get it. Yeah, you guys have to be authentic. You can't be friends, cuz nothing's gonna work out there.
Scott Benner 41:40
And that goes for Lowe's too, by the way, you know, and everything else if you just weightings, you know, unless you've eaten the kitchen, then you got to wait. And sometimes, you know, and that's, that's a hard lesson. But, but So tell me a little bit about that. Like, where would your Where were your blood sugars? You know, prior to listening to the podcast and hearing those words from that person? And where are they now?
Monica 42:03
Um, I think my agency was averagely around, maybe it's like 7.98. And right now, it's 6.9. I'm trying to get it down to 6.5 for my next endo appointment, which is in January. So
Scott Benner 42:17
where are your thresholds set on your next come low and high? Ah,
Monica 42:22
I haven't 70 to 170.
Scott Benner 42:24
So yeah, your next step to bring your a one c down is moving your high threshold down,
Monica 42:29
right? Yeah, I'm gonna move it down. What I really had to work on originally was, I'm a very like, up and down person on my graph. And like, when he mentioned the whole standard deviation thing, I was like, I need to get a straight line. That's what I need to work on getting. And that's what I've really been getting good at is finding that straight line
Scott Benner 42:50
keeping the peaks out and everything.
Monica 42:52
Yeah, I'd rather have a straight line than being at 300. And then at 60, and then 400. And
Scott Benner 42:59
yeah, that never ends. Well.
Unknown Speaker 43:01
Yeah, once you're rolling,
Scott Benner 43:03
it doesn't plus, plus it that can't be undervalued is that you're just you feel terrible the whole time. You know, and it's just not good for you. But But the point is, is that and so the way you get the way you'll get to that is with the you get what you expect, um, theory. So right now, do you go over 170? Very often,
Monica 43:23
um, I think I do. But I would go my struggle is like, being in school and at work. It's hard to just be like, constantly dealing with diabetes, tired to be like, beeping in the middle of my class. And then like, everybody looks over and I'm like, I'm sorry, everyone, like, I can't help but like, I don't want it to go off and beep during class. Or at work. I just feel really bad when I always have to, like be fixing something. And I have to be like, oh, I'll be right back. Like, I need to go drink a juice or let me just go take a quick shot because I don't think my pumps working right now.
Scott Benner 43:59
What if I said to you, that by lowering the top threshold, the high threshold, you would react quicker, requiring less insulin and cause less lows. Does that does that make sense? Yeah, you guess Monica,
Unknown Speaker 44:15
listen, I got so like for
Scott Benner 44:19
let's make let's let's do some real world examples for you. You're an adult. We don't even know how much you weigh but you're 18 years old. So we have a picture in our head. You're somewhere between 90 and 200 pounds probably. And so you have a blood sugar that's I don't know you're you've eaten all the insulins gone out of your body, the food's probably gone. It's you know, it's that three o'clock in the afternoon. And your blood sugar is 120 diagonal up. If you wanted to just stop that diagonal up arrow. How much insulin Do you think that would take in that situation?
Monica 44:49
Um, I probably take a bolus of maybe like a unit and then I'd probably do 150% for bazel.
Scott Benner 44:54
Okay. Now in that same situation, if you didn't notice till you were one 70 and your blood sugar was going straight up, how much insulin would you need that?
Monica 45:04
Like, three units or four units? And then maybe a 2%. basal as well?
Scott Benner 45:09
And then what would happen afterwards?
Unknown Speaker 45:12
Ah,
Unknown Speaker 45:13
if you did, you'd have
Monica 45:16
normally even off around 90, look at you. Okay, well, I even off pretty easily. I don't have too many lows. I'm very scared of lows. So I don't
Scott Benner 45:24
have too many of them listen, and the fears real, like, you know, the ekey can't be underestimated that you're an adult by yourself. You're not a person like Arden, who's got somebody watching their back the entire time. And it's Yeah, it does have to be a consideration while you're doing. All I'm saying is, if you react sooner, by the way, Monica, my, I can hear a truck out on my street, which might make the dogs go crazy will say, but if you react sooner, you'll use less insulin, because highs cause lows because of the insulin. So you're in this weird situation where your blood sugar is going up, for some reason doesn't really matter why and in this analogy, but it's not because of a food in your stomach. So you put in all this insulin, once the insulin conquers the blood sugar, if it's still there, and the reason your high is gone, and there's no food in your stomach, then it's gonna drive you lower. The more insulin, the more insulin you use, the more chance you have of being lower later. So the way to get off of that roller coaster, is by bumping and nudging your blood sugar. You don't you don't want to be slamming it all the time, you just want to be sort of just nudging it back. Now, here's the secret. After you start doing that for a little while, it becomes so kind of intuitive, that you won't be getting the alarms and then you'll that's how you'll come to the steady line in between your to your to your threshold. So my advice to you might be Do you work on the weekends?
Unknown Speaker 46:50
I work on the dime, money, yes, not working so much. I know, all I'm doing today is like my only day off.
Scott Benner 46:56
This is my only day off. Well, thank you for sharing it with me, that's very nice. So you have to find find some times where you're home at least or you know, and and just do that for do it for me. Don't do it for yourself, do it for me, it'll be easier if you're doing it for me, push your push your high threshold to 150. And then from 150, try to get to 130. And you can get the 130 you're going to be golden. And even at 140. Ish, it's still going to stop that that stuff that we were just talking about. Um, it's not it's easier said than done, because it's more effort in the beginning. But I really think the effort up front will lead to less effort overall. Yeah,
Monica 47:35
yeah, I get that.
Scott Benner 47:37
How does it make you feel though, when someone says that to you?
Monica 47:40
I mean, I can I understand it, the logic of it to me Makes sense. I just feel like circumstances. Like, I don't know, when you're still trying to figure everything out. But it's so much easier when you're at home. Like for me, sometimes I'll be like, trending low, and I have to drive to work. And I have to, you know, call my boss and be like, I'm gonna be about 10 minutes late. I need to drink juice. I can't safely drive right now. Or if I'm like, too high, and I'm at work, I'm like, 400 like, I really need to go home. Because I'm sick. I can't
Scott Benner 48:10
You can't function at that point. Yeah, like we're gonna get you past that. I know. We are like, that's good. That seriously, that's it we're not you're not going to be there forever. Like you really aren't. Because that because now you hear like, Yes, I am. But no, no, but seriously, take a drink all of that. But seriously, you're right at the beginning of this kind of, let's call it an awakening because earlier, because earlier the phrase us but but so like you're just at the very beginning of understanding sort of what you need to be doing with the insulin. And now you need a couple more tools to put that into into into practice a little better. Because
Unknown Speaker 48:47
Yeah, I have
Scott Benner 48:48
to look I haven't I think I can click here and say I would say that Arden's last 24 hours were not great by my standards. at all, she was over 120 twice, and she was up to 150 twice. And she had a low one time around 60. But most people would call that pretty great. Right over the last six hours, she's been between 100 and 130. But fairly stable and steady the most part the last three hours have been great, right like 105 like hardly moving and her blood sugar right now and consider that she's 10 minutes into her meal now, her blood sugar's 103. And her her graph lines never the the arrows never changed. So it's still stable. So it's, it's there, like I can't stress enough. I do not know any magic stuff about diabetes. I am not particularly good about this. I'm just, I just figured it out that it's about the timing and the amount. That's all in between. Once you get that, or CGM just adjusted, she's 99. And but still the arrow stable. So this Bolus that we did together, what is now 30 minutes ago, is a rousing success. If 45 minutes from now her blood sugar starts going up, I don't think of that as not a success, I just give her more insulin. Because in the situation I was in having to Pre-Bolus while she was at school with her blood sugar already at 100. And whatever it was back then 110 or something like that, I could not be incredibly heavy handed with the insulin, I had to do what I had to do, I had to balance it the way that I did. So if she gets high later, or tries to get high later, I'm just going to give her more. If she tries to get low Later, we'll, we'll try to shut her bazel off and see if that helps. And if it doesn't, like you said, we can bail on the Temp Basal that we set up, I can bail on the extended Bolus that I set up, there's a lot of things I can still do in the next 2530 minutes to manipulate it around still. The overwhelming message though, has to be it sounds like a lot because I'm explaining it to you. But I don't think about it at all. But yeah, it's not something I spend time thinking about. And that's the time that's the space, I'd love to see you and anybody else get to where it just, it just seems like common sense to you. And it works most of the time, because it doesn't work all the time. Like there should be no confusion about that. Sometimes it really doesn't go well at all,
Unknown Speaker 51:27
you know, yeah.
Scott Benner 51:29
That's when I mutter usually in the house and I curse while I'm buttering and my wife's like, don't do that. I'm like, Yeah, what I'm frustrated. Yeah. And it worked yesterday, so then it doesn't make any sense. But but that doesn't happen that frequently. You know, and also that straight line you're looking for, I want to really make you realize that like, that's not art in situation or doesn't have an incredibly straight line, our standard deviation is not nearly as good as I would ever hope it to be. Which is 13. And growing, and it's school and in puberty and the whole thing like um, I think that if I use her me proper clarity app really quick to use the clarity app for your Dexcom.
Monica 52:09
No, the clarity, clarity on your phone where you
Scott Benner 52:12
can see like your last, like, what your bah, bah, bah, all that stuff means? Yeah, like, Oh, cool. So when it pops up here for it's gonna populate for a second. Now that's another boring spot. Maybe I edit out this silence later, but probably not. This is really helpful to see because in the last 90 days, Arden's been in range 72% of the time, her average blood sugar's only been 120, I would say I was telling someone the other day, these last 90 days for Arden have been some of the most difficult that we've had with diabetes. And diabetes got really aggressive with this a bunch. And I just, I just maintain that level of aggression, I just kind of shot back. So she's been above our range Hi, 16% 72% in range 8% below 3%, what would this would call low. And we're calling low under seven D. But her average glucose is 126. So that means within reason with low risk of hypoglycemia with within reason What that means is Ardennes, a Wednesday should be six when we go in, or someone or somewhere right around there. And if that happens, then I can confidently tell you that RNA once has been between five, six and six, two for literally four years. And it's so nice, right? But not with perfect graphs. But just staying away from the really high highs and really low lows. And generally speaking, yeah, that's how it works. It's not it's not magic. You don't I mean, you have to and then the other part is overnight. You can't give away those overnight hours. Because
Monica 53:48
the best time Thank you tell people like 90 all night.
Scott Benner 53:52
Yeah, tell people why overnights the best time one simple reason, right?
Unknown Speaker 53:57
You know, anything? There's no factors? Yeah, no factors. Typically. no food,
Scott Benner 54:02
no carbs. And if you aren't a plus your day, you're beyond your Yeah, you're growing yours, probably. But you know, like, because people with young kids like, oh, there's plenty of factors overnight because the kids are growing and the cortisol is kicking in and all that stuff. But once you're an adult, it shouldn't be a ton going on while you're sleeping. Oh my gosh, he had diabetes without food is almost easy, right?
Monica 54:24
Oh, yeah. That's the problem. Mike, if
Scott Benner 54:27
you could just stop eating this would all be fine.
Unknown Speaker 54:30
Ah, if only
Scott Benner 54:33
oh my gosh, I wonder how long I would go if I just stopped eating. Like, how long can I really make it? Probably. I guess I'd started crying and like a day maybe, you know,
Monica 54:42
I don't think I could do it.
Scott Benner 54:45
Tell me a little bit more about kind of that being adult part of it. Like having to worry about driving and going to work and everything is that's a lot of pressure, right?
Monica 54:54
Oh, so stressful. I feel like I have other people's lives. In my hand, and I have to be so responsible for everybody else, like on the road or around me at work. And there's just all this pasture to keep my like blood sugar in a good range. Just for like, the benefit of those around me, especially when you're driving
Scott Benner 55:15
I would imagine that's a lot of I mean, not only will you likely drop dead if you crash your car, but there's you're gonna hit somebody else with with a lot of certainty. And, and so that is something that is with you. Like, you can't you can't shake that right, like, like that idea that, that I could make them because what is it a basic concept? Like if I make a mistake with this insulin, eventually they could end up with me hitting somebody with my car.
Monica 55:40
Mm hmm. Yeah, I mean, but for me, it is. Yeah, I stressed about that all the time. So but I'm good.
Scott Benner 55:48
No, no, I'm just gonna say you're 18 are you and you're working? Are you in college and working? Are you just working working?
Monica 55:54
I'm in my second year of college, second year college. Okay.
Scott Benner 55:57
So on top of that, you're going to school? So are you going to school? Why do you do commute to school?
Monica 56:04
I drive it's about a 20 minute drive really close
Scott Benner 56:07
to your community. You live at home and you go to school? Wow, jeez. So there's a lot going on in your life. You work all the time you have you're going to school you have diabetes, your parents. I mean, we were nice about it, but really haven't helped you very much with it. And they're not helping you. Now, I assume. Right?
Monica 56:25
I mean, in a lot lately. I have a house up. Yeah, that well, they both got iPhones. So they're on my Dexcom. Now, they can watch what I'm doing. And at first, I was so annoyed by them texting me. But now they say things a little bit nicer. So it's nice. Now it's kind of sweet.
Scott Benner 56:45
Oh, that's interesting. So So when when they started off, they were a little Curt when they were telling you what was going on with your blood sugar? And did you tell them? Hey, it's not helpful for you to be crappy to me like this? Or did you think they figured it out? or What happened?
Monica 56:58
I'm a very vocal person. I felt them that I did not like it. I was like, I will not even wear Dexcom if you're gonna text me. Oh, cool. See you. They were some change. Yeah, yeah, I will just get my mom would text me something like, like, why are you high right now? Like, you need to be taking care of this. And I'd be like, I'm very aware of the high right now. And I am taking care of it. And good question. I have no idea why I'm high. It's there. And I just have to take care of it. Now.
Scott Benner 57:27
Do you know why? Because if you have some special knowledge, you should share it with me. Yeah, I wish I knew why. Yeah. Well, you just I can see you texted back. You're like, you don't know why either lady. So don't. Don't try to tell me you know, something I know. You'd all know. Well, that's interesting. Because I do think that you know, you'll hear some people say not to use the word test. I have to admit I've never not I've never been able to do that. Like the check your blood sugar thing. I think I say test I text aren't attacks to test, you know, and things like that. I
Unknown Speaker 58:00
never had a problem with that. I don't have a problem with the terminology. But
Scott Benner 58:02
I do have, you can see where tone and and just, you know, being short with somebody is even if your mom like if you really stop and think about what your mom meant, like, why are you high? If you really looked at the psychology of that other side, your poor mom somewhere watching your blood sugar be high, it's probably breaking her heart. She doesn't know how right she doesn't know how to fix it. She's completely lost. And it comes out wrong. You don't I mean, like, most of most of human communication comes out wrong at some point or another, but it really does make you aware. to not talk to people like that, because it's such it's such a it's such a good lesson for the rest of life, the way you talk to somebody can really crush them in ways you might never see it. You know, it's you've done such a good job over the last hour of just talking about what the pressure is like and the stress and, and and everything. The last thing you need is for someone else to be telling you. Hey, it's you're doing it wrong. You know, you're like yeah,
Monica 59:01
yeah.
Scott Benner 59:05
Was it a forest was diagnosed with Type One Diabetes at 10 years old, and she was determined to not let diabetes negatively impact her life. as a direct result of that promise she made herself Elizabeth created a nonprofit organization called dancing for diabetes, dancing, the number for diabetes.com all Elizabeth once is free to check it out. She just wants you to know it exists and understand what it does. That's it, there's nothing for you to buy nothing for you to do. Just go to the link dancing for diabetes.com. We're coming up on the end here, but we're not too close. What would you say? So for parents listening, what do you think some of the most important things are that they should be doing and or not doing to help their kids along through these these years
Monica 59:52
right here. Um, I guess in my opinion, I feel like you see a lot of like Instagram accounts. Like, parents who have like their kids with diabetes, and I feel like a lot of parents almost limit their children. I feel like they see them as like, oh, like, my child is like disease, like, you all need to be treated my child like they're diseased. And I just, I guess I don't see it that way I don't see myself is like diseased and I feel like you shouldn't be having your child, like present themselves to the world is like you should be treating me differently nicer in a way. I mean, I try not to get offended by what people say, you know, people make jokes about diabetes all the time. And I've noticed that the online community can get really, really upset really quickly. But I mean, no one means actual harm about it. Like, no, it's not really that big of a deal.
Scott Benner 1:00:46
Yeah, I mean, there's, I think, I think what you're saying, and the way I try to raise Arden is, you know, somebody's always going to be crappy about something somewhere, if you stop, if every time something like that happens, it knocks you off your horse, and it offends you, you're gonna spend your whole life like that, you know, you can't, you're not going to fix the world, you're not going to explain diabetes to everybody. There's a million things going on in the world that I don't understand that I'm never going to understand I'm sure I can say things that that wouldn't feel good to people living with a, you know, a different, you know, ailment or something like that, or just, you know, there's not everybody understands exactly how to talk all the time, plus, we just covered, none of us are very good at communicating anyway. So, you know, so a lot of people just say things without thinking. And if you think of yourself, right, and if you first of all, they probably don't mean it. And second of all, if you think of yourself as your diabetes, that's probably your first mistake. You are Monica, you're fantastic. And you happen to have a pancreas that doesn't work. And this is how you manage that. You if if if you're thinking about yourself past that, that's, that's hard. Like, I know, things are harder. And they require more effort and all that stuff. But there's been enough, you know, examples of people even just coming on this podcast, or you see people, like you said, on Instagram, or there's enough examples of people who are pushing through it, that, that really, I'd be aiming for that if I was you. And and I don't want to undervalue that some people are just run over by it in a way that they can't stop. But But those people have, well, those people have a different issue than most of us. And as sad as it is, and as much as we should all try to help them. That that should not be the common target for everyone living with diabetes, we, you know, most of us are going to be okay. And you know what I mean, like, so what kind of stinks is, you mentioned, the community, is that what the community is basically made up of people who are newer diagnosed, or maybe struggling a little bit or trying to be very advocate based. And these are generally people who are in their first five years with diabetes, which is the time where you really know the least about it. And so sometimes, and it's not everybody, but sometimes you have the people know, the who know the least about are still trying to learn about it. They're the most vocal about it. And so when you see people get upset that you know of the Wilford, there is that great cartoon of Wilford Brimley as a as a walrus saying diabeetus, or something like that. It's just adorable. And, and but, but when people see that they get offended. What you need to know is the thousand people who you know, online are offended. But the millions of people who aren't online or at home, they don't even know the thing exists. And if they knew it existed, they wouldn't think twice about it.
Unknown Speaker 1:03:37
Yeah, you know,
Scott Benner 1:03:38
so it's a bubble a little bit. Yeah, but but but but what you're saying is what you're seeing from those people is that maybe, overwhelmingly, are they just putting like a protective bubble around their children that you think is probably not good for their kids? You wouldn't want if it was you, I guess.
Monica 1:03:57
Yeah, I guess I just see a lot of people, I mean, people overreacting to what they see. And they like, just freak out and can't like, handle the fact that someone wouldn't know how to properly address their child or ask their child a question about diabetes. And I just feel like, you know, people are just curious and they don't mean harm.
Scott Benner 1:04:15
Yeah. And you don't
Monica 1:04:17
need to throw yourself a pity party all day. Well,
Scott Benner 1:04:20
I'll tell you, I'll tell you this. This makes me think of them. Everyone I know who graduates I buy them. A little handheld book. It's the it's a commencement speech called This is water. And it just it makes a couple of that's a couple little parables that talk about some things in life. But at one point it just it makes the kind of like the overreaching kind of like, idea that like, like Think of it this way, right? And I'm gonna put it into my own terms, but everybody's been driven past really fast by somebody in a car. And and when they go flying past you, they're driving dangerously and your first thought is Oh, you idiot. You know, you're gonna kill somebody. But what if that person just really needed to poo? Okay? And and have you never been in that situation, Monica, where you're driving a little quicker because you're like, I really got to get to the bathroom. Right? And so while while the truth is that most people driving quickly are just jerks who don't care about other people, some of those people have to go potty. Wouldn't your life be better? Monica, if you just assumed that everybody who drove past you fast? Had a bathroom emergency? Like, like, do you know? Do you see what i'm saying by that? Because like, because what's the value in you being angry all time at everyone, when you might see 100 people and 10 of them might have a really good reason for doing this thing they're doing. How do you know the person you're seeing right now doesn't have a really good reason. And Haven't you been in that position? And wouldn't it just be healthier for you to just assume the best of everybody? Yeah, because what do you really get out of assuming the worst except that makes you miserable? And you don't fix them or change anything? It just, you just get angry? Yeah, that's about as hippy as I get right there.
Monica 1:06:05
I mean, as my dad would say, he would say, you know what, assuming does, yeah, I'm not gonna repeat. You can't go after that one. I
Scott Benner 1:06:12
got the claim rating on iTunes. What most people don't understand. Because my unless you talk to me privately is I curse crazy in my regular life. And doing this podcast is an absolute exercise in me not cursing for now. Do you love the curse? No.
Unknown Speaker 1:06:32
And she got like, you don't I love it.
Unknown Speaker 1:06:34
I just really, like,
Monica 1:06:36
when I was a kid, I always just really wanted to curse. And then once I was kind of hit like adulthood, and it was loud. I was like, You didn't go? Look, it's not my thing.
Scott Benner 1:06:48
Well, good for you. Your parents have done a good job raising you. I my parents were a mess. Obviously.
Monica 1:06:53
I just think I don't do a good job at it.
Scott Benner 1:06:56
You think you could just you're a failure as a cursor.
Monica 1:06:59
I think I just looked throw the words in the wrong context.
Scott Benner 1:07:03
Then that could end up being the the name of this episode, Monica failed cursor. I don't know if that would make any sense to anybody. But, uh, but but so I talked a lot in this one. But I apologize for that. But I think that's okay. At the same time. Did you? Do you feel like you got out what you wanted to get out and do anything else you
Unknown Speaker 1:07:20
wanna talk about?
Monica 1:07:22
Um, I think the main thing, in my opinion is probably the mental health is that I think a lot of kids with diabetes should just really go see a therapist. It's really helpful.
Scott Benner 1:07:34
Yeah, how did? What do you think it did for you more than anything?
Monica 1:07:39
Um, I think it just gave me a different outlook on everything. I think I thought everything is hopeless. Being diabetic, I was like, I'm not gonna go anywhere. I don't know what to do with my life. And I don't know just give you like coping tools and kind of made you realize that like, I know, sounds really terrible, but like, my problems don't matter that much. Like, I need to take back and step back and see the rest of the world. Yeah,
Scott Benner 1:08:05
the world's a little bigger than you. Right. And yeah, and then that helps you not overblow things when you win. Yeah.
Monica 1:08:11
It's not out of proportion.
Scott Benner 1:08:14
Yeah. Well, good for you. I
Unknown Speaker 1:08:15
was really out of proportion.
Scott Benner 1:08:17
I think if people can afford therapy, or they are their insurance covers that, especially in this situation. It is it cannot be a bad idea. It absolutely, yeah. Hey, listen, we are pretty much done. But it's 1207 here. Now, if you remember back when I said it's 1121 and I was talking to Arden, it's 1207. I've been watching her blood sugar for the whole hour. We've never had an arrow that's gone diagonal Up, down, up. Nothing. It's always been stable. And she's been eating now. She's probably almost done eating but started eating 30 minutes ago, I'm gonna let you guess what her blood sugar is right now.
Monica 1:08:53
I'm gonna go for 110
Scott Benner 1:08:54
that's not a bad gas. But it's 88.
Monica 1:08:57
Okay, that's even
Scott Benner 1:08:58
better. Right? And that great. And, and, Monica, you and everyone listening are gonna get to this, because trust me, and I want you to hear this closely. If I can do it, and you don't know me, but trust me if I can do it. We are because I am bad at math. I don't do a good job paying attention to details. And it's there for you. Like if you just kind of listen to what everybody's saying on these episodes and think about it is timing and amount. And just kind of trying to create a tug of war between the insulin and the carbs were sort of neither side wins. And being bold. I think there's a I think there's a pathway to it for most people. So I really appreciate coming on talking today. Thank you so much.
Monica 1:09:45
Thank you for having me.
Unknown Speaker 1:09:46
You were delight fun. Monica, you were delightful. I'm
Scott Benner 1:09:48
glad you had fun and even if you're lying about I'm glad you lied about it. Thank you so much.
Monica 1:09:52
No, I'm not lying. I really did.
Scott Benner 1:09:57
Thank you, Monica, for being terrific and for giving your time to the Juicebox Podcast. Thank you on the pod next comment dancing for diabetes. Thank you so much for making this episode of the Juicebox Podcast possible. Hey guys, I get your emails and I see the results you're having. I'm incredibly proud of every one of you, the ones I hear from, and even the ones I don't. I know how hard you guys are fighting and how hard you're trying. It is incredibly heartwarming that you take the time to share these messages with me. For those of you who are not reaching the results you want just yet. Keep going. You will absolutely get there. Thank you again for listening to this episode, the Juicebox Podcast. There'll be one next week and every week. Subscribe today tell a friend. Oh, you know what, and let's say this one last time, one half of a million downloads.
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