#170 Just Another Tuesday with Type 1 Diabetes

Sugar Rush...

Erin shares her thoughts on T1D management, anxiety, depression and the rest. It's just another Tuesday with type 1 diabetes. (Scroll to bottom to see Arden's dress).

Sugar Rush Survivors - Erin's Blog

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

Scott Benner 0:00
You've chosen today to listen to Episode 170 of the Juicebox Podcast and allow me to say, I think you've made a wise decision. Today I'm speaking with Aaron and her conversation is filled with story with management ideas. It's got the fields, she talks about everything from diagnosis to depression, anxiety, everything, everything you can think of wrapped around Type One Diabetes gets involved in this episode, somehow or someway, and it pays off right until the last moment, some of the biggest topics don't come up until after it's been on for an hour. I was even stunned when I went back and read it. I was like, Man, this thing pays off. So I hope you enjoy it. Before we get going, let me ask you two questions. Do you have your Omni pod? Do you have your Dexcom g six continuous glucose monitor? Have you clicked on the links in the show notes? Why not? If you haven't Dexcom is a proud sponsor of the Juicebox Podcast. They've never actually said they were a proud sponsor, but I'm assuming they are. And let's just say right now that on the pod is a proud sponsor as well, and that I've actually heard them say, so pay for what I just said was absolutely true. Nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making changes to your health care plan. And my dentist office is calling so this is going great.

You're having a rocky morning.

Unknown Speaker 1:32
Um, it's just a Tuesday.

Unknown Speaker 1:38
Oh my gosh. So

Scott Benner 1:39
you What did you do? You went you took you went to school and forgot? The dexcom receiver, what

Unknown Speaker 1:44
did you what was what? Yeah.

Erin 1:46
So normally, I asked my son to be five. I asked him to pack his sling bag with his kit, and XCOM and his water bottle. And I was in the moment, I was asking him to do a couple of other things to you know, put on shoes, and all this stuff and the other. And so I had all of the stuff. And I thought okay, well, I'll just put it in the sling bag today. We've been pretty adamant lately, especially about just getting him used to, you know, this is what you need to have with you. It's your responsibility to put it in the bag and make sure you have it with you. I should have just done that.

Scott Benner 2:29
For five years doing pretty well, though.

Erin 2:31
He is yes, we're just we're trying to get him. Yeah, you know, get them there. So I put in the kit and the water bottle in the bag. And I sat down the Dexcom we have the phone, we sat down with the Dexcom phone. And it was just time to go. We all went out to the car. My five year old son, my two year old daughter and myself. And it wasn't until I was driving on the way back home. And I always check you know, to make sure that the the shares

Scott Benner 3:03
working and you can see

Erin 3:05
that comes on is peered I'm getting numbers. And I didn't see the numbers on the way back home. And I thought oh, boy, I think I forgot it.

Scott Benner 3:14
So which version of Dexcom are you using? Is it the?

Unknown Speaker 3:18
We're on the G 5g five?

Scott Benner 3:20
But he needs the receiver.

Erin 3:22
He's not No he doesn't it? It's not the receiver. It's a it's an old iPhone. Oh, okay. I

Scott Benner 3:28
was gonna say I was like that, that didn't make that say for a second. But that's great. Let's say you're like, Oh, where's the numbers? And the numbers have been gone forever?

Unknown Speaker 3:35
Yes. Well, we should

Scott Benner 3:36
know he's not at least you know, he's not addicted to a cell phone. I five, five years old because my daughter would never leave the house without her cell phone. Oh, gosh. Well, it's

Erin 3:45
what's good about it is it made it can't do anything. We don't it can't make calls. You know, we've got it set up right now. We only just recently made it so that we can send him a text. But he doesn't even know that yet. Because, you know, he's not even he's learning his his letters and numbers. You know, he's learning how to write sentences. He doesn't know how to text yet.

Unknown Speaker 4:10
So well, that's cool. So

Scott Benner 4:11
so I was gonna say that. So of course he doesn't want the phone doesn't do anything. And right. If it did something he wouldn't, he wouldn't

Erin 4:20
know if it is boring.

Scott Benner 4:23
So we obviously started and not really started so Introduce yourself for just real quickly. We'll keep going.

Erin 4:30
Sure. I am Aaron Showalter. I have been a type one mom since December 27 2013. And my son was diagnosed when he was 21 months old. Yeah, he's now five. So it's been you know, a rocky couple of years but we're here and Yeah,

Scott Benner 4:55
well, so. Yeah, I Sharon reached out and she was like you don't have enough people on who have really little kids. with diabetes, and I was like, you're right. And so, so she came on, and I think it's a, I think it's gonna be interesting. So let me just we'll start off, you know, with a couple of questions that get us rolling. So, any reason to think your kid was gonna have diabetes? Was it in the family, your husband? Has it? Grandmother? Nothing like anything like that? No, absolutely not. We

Erin 5:19
have no family history of it whatsoever.

Scott Benner 5:22
So you just, you're just there. And he is he? Is he your oldest?

Erin 5:27
Yes, he's my first. Okay. So

Scott Benner 5:28
your first your first kid, 21 months old, you're probably pretty excited. Coming up on the second birthday. haven't killed him, right. So you're like, doing it, you know, paying your bills, things are happening like this. We made a family. And

Erin 5:46
we really didn't know until I guess around Thanksgiving, I kind of started to realize that there wasn't something something just wasn't quite right. I had absolutely no idea what you know, I have, I have no medical background. This certainly wasn't anything that we were looking for. And in really little kids, it's really hard to tell because they can't tell you how they feel. So looking back on it now, I can look back on the photographs from Halloween from that year. And I can see that he was thin and gaunt and pale and had the dark circles under his eyes. And my husband is very tall and thin. And we just kind of assumed that well, you know, he's growing up and not growing out and he's going to be tall, like his daddy. And I went on we went through Halloween and Thanksgiving. Christmas preparations. And it was just really, you know, story that I'm sure you've heard time and time and time again. But with a with a really little kid. What happened was we were he was being through his diapers at night. We thought we had a diaper problem. So we were looking for industrial strength. super absorbent diapers on Amazon. And you know, it's still happening. He was being through the diaper through his PJ's through the peach in the mattress pad and everything. Anything he was close to. Yeah. Yes, exactly.

Scott Benner 7:19
That's fun. Isn't it interesting that you're because I don't why wouldn't it but you like wow, they the diaper doesn't hold the urine.

Unknown Speaker 7:25
Right?

Scott Benner 7:26
We need better diapers? Yes. makes total sense. It really genuinely does make sense. When did you by the way? Did you find industrial strength diapers at any

Erin 7:37
point? I think we switched brands a couple of times funny. Yeah.

Scott Benner 7:45
So did you did he gets sick? Or I mean, what pushed you over the edge and made you go?

Erin 7:50
There's something wrong? Well, no, not really, it was just kind of a collection of things. He would drink a nine ounce bottle of water and immediately ask for more. Those two things together were just something just wasn't quite right. And he was, you know, we would go for walks just the two of us. And he would be so excited. And we'd head down the block, and then halfway down the block, he would just want to sit down. And I was getting so frustrated. And I feel really guilty about it. Now I know that it shouldn't. But there it is. It's just there. You know, and I thought, Oh, come on, you know, we're out for a walk, let's have a nice walk. But he would just shut down. And you know, now I know that was because his little body just couldn't go anymore.

Scott Benner 8:35
And you're stuck thinking, Hmm, I made a baby. And it's lazy. This isn't how I saw this going at all. I thought maybe some sports or something would happen. We I could be that mom, I can watch a game on Saturdays, but this kid walk up the street.

Erin 8:50
And it wasn't even just just a human sitting down. It was I mean, it would be like a full blown meltdown. And of course, you know, I'm thinking, Well, you know, we're coming up on on the terrible twos. And this must be what happens. But there was still something that just, you know, I saw my friends children. And I saw their tantrums and they're just there was something a little bit different about this. And I really didn't know what but the thing that really made me question what was going on was, there was the smell on his breath. And I've since learned that not everybody can smell it. And over Thanksgiving, I was asking my husband to smell my son's breath and my mom does smell his breath. And nobody else could smell this weird smell. And I couldn't even I couldn't describe it to it. The only way that I could describe it, then was snow plasticky.

Scott Benner 9:42
Yeah, I told Kelly metallic when I told her

Erin 9:44
Yeah, yeah, I've heard a lot of people say that to you. So it didn't click until I started. I mean being a 21st century parent. What do you do? Dr. Google. I started typing in symptoms and it didn't click until somebody online I mentioned that it smelled like fingernail polish like acetone. That's what it really smelled like to me. Well,

Scott Benner 10:06
it's funny because I said to Kelly I was like, it's like metallic or maybe it's fruity. Right? And then she was like, oh, it just right right there. And Kelly was like, she's diabetes. And I was like, really? And we weren't a couple years ago. We were a decade ago. The we you know, we were we were on vacation. In like a rental house. It didn't even have Wi Fi I took I took my sister in law's laptop because not even everybody had a computer at this point. Right. hanging over a deck stealing Wi Fi. From a house next door typing in signs and symptoms type one diabetes.

Unknown Speaker 10:40
Oh, wow.

Scott Benner 10:41
That's that's really something so you guys,

Erin 10:42
How far away are you from medical care?

Scott Benner 10:47
wasn't bad. We it was but it was like one o'clock in the morning. So I called I called a friend of mine who was my is our pediatrician. He actually went online and found me a hospital ago though.

Unknown Speaker 10:57
Wow. Yeah.

Unknown Speaker 10:58
But are you far?

Erin 11:01
No, we're not we're, we're right in town.

Scott Benner 11:05
To see ever are you?

Are you out west? No, we're in the south right now. Yeah, this Africa since it because I'm hearing like, I'm hearing your Southern?

Unknown Speaker 11:13
Oh, it's not Southern to you a little

Scott Benner 11:16
bit. Yeah. And but at the same time, our times difference was that I thought maybe like maybe she's more or less than I think in a transplant. But okay.

Erin 11:23
So that's really interesting, because most most people don't hear the southern that's interesting, cuz I've been here, like pretty much all my life. But

Scott Benner 11:31
it's not. It's not strong years. It's phrasing next time you say something I'll get? I'll put it out to make you feel really, really self conscious about?

Erin 11:41
No, it's okay. I'll feel more at home. I've kind of felt out of place for a while.

Scott Benner 11:46
So okay, so, so we're at the hospital now.

Unknown Speaker 11:50
And, oh, no.

Erin 11:54
Christmas happened. And we're opening presents, and he would open a present. And then he didn't want to have anything else to do with it. And it's just not normal, you know, for a little kid not to get excited

Scott Benner 12:09
about all of those just like the walks he just he kind of couldn't keep it going.

Erin 12:12
Yeah, very long, right? Yes, exactly. So that was the 25th. The next day, you know, I was I was googling, I think, probably that night and the next morning and found, you know, all this kept popping up. And I call her pediatrician. And I said, I think that I need to have my son in to get checked out for type one diabetes. And I told my husband after I called her pediatrician. And he had a little upset with me, he's very analytical. And he didn't want my guessing to influence, you know, what, what the diagnosis might be. But I was like, I can't fool a blood test.

Scott Benner 12:58
Right, right. I mean, what if you called the Doctor off and said, Listen, I think my kid can fly, but I need him to test. It's not like doctors gonna go Wow, you're ready, Ken. That's amazing. Yeah, I hear what your husband saying though. I think that sometimes when you're like, you know, I think of it more like when you're on on the phone with customer service, like sometimes you don't know, lead them the wrong way. Because they get out of there. They get out of their path that they usually use, and then

Erin 13:19
they get and I and I completely understand and I understand where he was coming from. And yeah. And the

Scott Benner 13:27
doctor say to the doctor, like, Oh, you,

Unknown Speaker 13:31
the kid doesn't have

Erin 13:32
diabetes who are and I'm really glad that that was not our story, because I've heard that story from so many, many people. We went in, we saw our favorite nurse there. And I told him what I thought might be going on. And he went and got their blood sugar, Escott their, their their glucose kit, and check his blood sugar, and the blood kind of drained from his face. He went to get another test trip. He said I just needed to make sure he was very calm about it and came back and checked his blood sugar again. And he showed me the result. And it just said hi. And you know, it was over 600 it was higher than their meter could read. So they set up for us to go up to our nearest Children's Hospital. And we went home and packed a bag and went up there

Unknown Speaker 14:27
still Christmas Day.

Erin 14:29
This is the two days after December 27.

Scott Benner 14:32
I've come to realize that I think that everybody says that they're diagnosed on vacation or on Christmas or something like that. But I think what really happens is, stuff's going on for a while. And when your life slows down, you can actually pay attention to it.

Erin 14:45
That is exactly what happened.

Scott Benner 14:46
Yes. So it's not that everybody's magically diagnosed on Christmas. It's, we're on vacation because vacations a big one. You know, we figured it out on vacation. You hear that constantly. I think it's just you know, you slow down enough to really start putting the pieces together.

Erin 14:59
Saying Exactly, yes, there's been so much lead up to the holidays that, you know, yes, I think there might be something going on. But I need to focus on this.

Scott Benner 15:08
They consider him to be in decay when he got to the hospital or no,

Erin 15:11
no, actually, thank goodness, he wasn't. I don't even remember what the number was. Yeah, and the we didn't, we weren't given any sort of instructions on the way up there. So he's upset and you know, he's in the backseat. And in his little car seat, he has a bottle of water and a bag of pretzels.

Scott Benner 15:34
a lollipop and five pounds of sugar. Just started eating, he was very hungry.

Erin 15:39
I mean, we didn't know any better. You know, we we knew that we had an upset toddler. And we were going to something that was going to be pretty scary for all of us. And we kind of needed some calm and we kept feeding him pretzels. I think that's interesting. Yeah, considering Phil other things, but because that

Scott Benner 15:57
ride is so you know, I've described

Erin 16:01
it for us, it was about an hour and a half, two hour ride.

Scott Benner 16:05
Wow. And that whole time, you're just sitting in the quiet together thinking,

Erin 16:08
all of the things that you're thinking, or be facing? Yes, exactly.

Scott Benner 16:14
What it said a couple years ago, what what's the what's the so you're in a children's hospital? What's the play when they come out? Are they? Are they giving you you know, talking about insulin pump? Or are they just giving you a pen? Do they talk about glucose monitors, like how does it how does that conversation go? Once he's in and they get him stabilized? And everything? What's it sound like?

Erin 16:35
Do you remember everything? I know, that's part of it. It's such a blur, it was four days. Of course, we're you know, sleep deprived as everybody is at diagnosis, and just worried as all get out. I have to say, I'm really, really grateful for our children's hospital and for the training that we've received. I've talked with a lot of parents, and then who I don't think got the level of training that we got, which really scares me. And this and this is a whole other topic of conversation. I've talked with adults who have been diagnosed with type one, and they get ridiculously low amounts of information. It's It's frightening. It is shocking

Scott Benner 17:23
that people out here they just gave me insulin needles. They're like, Well, here you go

Unknown Speaker 17:27
and collapse in two weeks. Yeah. Do you then hopefully, yeah,

Scott Benner 17:31
that I've heard I've heard stories that are the people would have been better off on their own. Like, if they just had access to the medication on their own and Google, they could have figured out better. Right, but yeah, so you get so you got good direction. And but you know, at first, I can go back for a second. So I hear like, you're, it's it's a confusing time. And so even asking you a specific question about what happened in the hospital, you're not gonna be able to come up with a specific answer. Like, it's, it's interesting. I remember feeling exactly the same way, just really like someone whacking me in the head with a bat. And I was just trying to pull myself together the whole time.

Erin 18:03
And do a bunch of math problems at the same time.

Scott Benner 18:05
Yeah, yeah, you were back at school, all of a sudden to

Erin 18:08
math is not my strong suit. So when I learned that my son's life was going to depend on me doing equations all day, and that was, I had a big laugh about that. This is, this is ridiculous, God.

Scott Benner 18:25
I'm not doing this. Well, do you? Do you still do you lean on the math now? Because I don't I pay no attention to I feel kind of guilty that I don't.

Erin 18:36
We have a pump, we've got an anonymous pump, which again, that's another conversation. Right? So he was on a pump, excuse me about seven months after diagnosis. Okay. So for those first seven months, yes, we had the notebook and doing the equations all day and trying to figure out how to dose him afterwards after he ate. Because he's not even do yeah. And I can't guarantee that he's going to eat everything. And I literally cried over spilled milk. After measuring it out,

Unknown Speaker 19:14
I measured that.

Erin 19:16
I measured it out. It got filled on the table, he had already had some how on earth do I measure the volume that's on the table that you know?

Scott Benner 19:27
And now you know, right? It doesn't matter at all. Like it just it's sort of meaningless at this point. Like it's just more so. So let me let me let me ask you a bunch because I think this is where like, the real value in your conversation ends up being so talk about having a 21 month old probably weighs I'm guessing around 20 or 25 pounds, probably not that not that bag, right? Using injections, and a meter. So what were your days like? Were they just like, like you're saying, just measure the food. See how much of it he eats figure how much of it he, you know, he actually gives him some insulin. Were you even trying to keep his blood sugar? Like from spiking? Are you just like, was it just constantly like a like a dam with cracks in it, you just kept putting your fingers in the holes? Like, what does that feel? Like? What was your goal, I

Unknown Speaker 20:16
guess?

Erin 20:18
To keep them alive, really. I mean, it's we started having some issues with him not wanting to eat. And I had to back off a lot. Because I was so anxious about getting it right and doing the math, right. And figuring out beforehand, how much is this portion? And trying to get him to eat nice round numbers have it and you know, please, can you eat just half or three quarters of it so that I can do the math? And all within a 30 minute timeframe, which is became really a battle between us. And it shouldn't have been?

Scott Benner 21:14
Well, you had that rusher, right? Like if he doesn't, first of all I need to it needs to be equal amounts so that I can do the math. And then it needs to be fast enough so I can put the insulin in. Yeah. Because what happens when when it took longer? How far did his blood sugar shoot up?

Erin 21:29
Oh, gosh, in those first months, and I would say until we got the Dexcom you know, like seven or eight months later? And it was easily he would go into the 400.

Scott Benner 21:39
Yeah, and this is almost every meal. Almost. Yeah. So you spent all day. Big number trying to get the big number back down. Yes. Time to eat big number, boom, boom, go to sleep. Oh, my Yeah. Well, that sounds

Erin 21:54
intense. And constantly worrying in between? Because, you know, not knowing Yeah. And he can't tell me how he feels. He can't say whether he feels low, or they feel high. And you know, not that he wouldn't even know what that felt like in the first place. Yeah. How

Scott Benner 22:07
often? Were you testing in that time?

Erin 22:09
Oh, gosh, at least 10 times a day. And I have to say that. Because of my anxiety about it. It was probably a lot more than that.

Scott Benner 22:20
No, I think 10 was my number. For sure. Yeah. in that space. And so talk about a little bit about the so this is this is multifaceted, right? So you're sitting there thinking is your first kid, first of all, I mean, you know, my first child was two, I was still just like, every day, I was like, I can't believe I've been lost this kid like, you know, like, he's here every day. Like, I've never left them somewhere or like, you know, like, you're still you're still having very minor, you know, celebrations, and so and so but you get you lose all that. First of all, I think that's not, that's not talked about enough. All this joy that you were looking forward to and expecting it just doesn't exist anymore. Now you're just an untrained, anxiety ridden? Nurse. Right? With

Unknown Speaker 23:07
a very good description. Right? Just

Scott Benner 23:09
you just like, Oh, my God, yeah. all day, every day, all day long is that I felt exactly like you did. And I want I want to say for a second that if for people who really do listen to the podcast, I think it's really important to know that what Aaron's describing is exactly how I was, I just, I would stare at Arden and just look for like a sign on her face or circles under her eyes or I don't know what the hell I was even looking for just something that would tell me what her blood sugar was. And you know, am I supposed to be it my whole life was like that. I talked about it here very briefly, but there was a time in my life. Where if you just randomly said to me Hey, Scott, an hour from now tell me when it's been an hour. I could do it. I could do it like down to 10 seconds. Because I was always thinking like that like, okay, in an hour, I'll test and an hour, I'll do this an hour, I'll do that. It got so like, like, the weight of it was so incredible that my anxiety was it was absolutely through the roof. Like, it was crazy. And I'm such a mellow person, you know, and so I just and there was no like, somebody didn't come along seven months later, go, Hey, here's a glucose monitor. This is all gonna be better for you. It just went on and on and on. And I don't know. I mean, this conversation makes you think about everybody who doesn't have the insurance or the money to have I think Scott I think about that every single day. And I wish

Erin 24:35
that at diagnosis if if the person wanted it, I wish they could have a dexcom we would give up the pump before we gave up the dexcom Well, you're gonna be we love the pump. I mean, the sump pump is a really great tool. Yes,

Scott Benner 24:50
intent are amazing. If you if you had to choose I'm sure. This is a fairly common sentiment that if you had to choose just knowing Which way your blood sugar is going? how fast it's going is such an incredible

Erin 25:04
support system to be perfect. It's like me can do something about it.

Scott Benner 25:08
Yeah, right. Yeah. And so so you spent that so i cuz I hear from people a lot are like, hey, my kids, little I have injections, I want to listen to the podcast, I want to do what you're doing. But I don't know how to like, you know, we've tried a couple of times to have people on who talked about MDI and how they do it. In the end, I think what it always came down to was if you're willing to test enough and, and live in the uncertainty, it's probably doable. But these couple of leaps to make with little kids. And the one the one is, are they going to eat? Like, how do you Pre-Bolus a little kid and then have them look at their lunch and just go harmony in that?

Erin 25:47
Yeah, exactly.

Scott Benner 25:48
I still ask Arden at lunchtime when she'll and she's gonna text me in about 10 minutes. I still, the thing I still say to her first is Are you hungry? Yeah. You know, I have currently the same thing. Yeah. Because I need to know, like, I mean, if you're, if you're ravenous, then I'm going to Bolus one way. If you're not, it's going to be another way. You know, but I can't. I can't not Pre-Bolus because it leads to the ruination of a day, like just like you. Yeah, it just one time eating food without putting the without balancing the timing of the insulin with the timing of the food. And you're just shot. It's over. And so and so you live like that for seven months, when you got the dexcom What was the most impactful thing like first like when you could see what was happening? What was the first thing you thought to change? When I think about our insulin pump, just now I sit and I think on the pot, what would I say about it? First thing that pops to my mind is that it's easy. It's easy to change. It's easy to use, it's easy to hide, it's easy to swim with, it's easy to take a shower with, it's easy. And that ends up being long term in your life maybe more important than anything else. Because at some point in your life, but type one diabetes, your goal is to just not think about it. Yesterday, Arden needed a pod change. You know, it's time to change your pod right after school and she had a friend over and they were doing homework. We were in the kitchen, she came around the other side of the island, filled the pod, pushed a button, stuck it on, pushed another button, went back and sat down with our friend. That was easy. Later she needed insulin. She pushed another button. Easy. It's not attached to anything. You don't get caught on doorknobs. That's easy. Seems like a small thing right now. But when you're walking through the house with YouTube pump and the tubing gets caught on a doorknob and rips your set out, you'll think I wish that didn't happen. And you'll probably curse a little bit. But if you want your life to be easier with Type One Diabetes, I really think you should try the Omni pod insulin management system. You go to my Omni pod.com forward slash juicebox or click on the link in your show notes. And on the pod, we'll be happy to send you out a free no obligation demo pod. So you can try it for yourself. Even that's easy, you just fill in the tiniest bit of information, and it shows up at your house. Hey, you know what, I'm going to put a picture of Arden in that red dress on this episode's webpage back at Juicebox podcast.com. My omnipod.com forward slash juicebox. So when you got that Dexcom and saw the data, what was the first thing you thought to change leap?

Erin 28:36
I was I was literally afraid to go to sleep I still am sometimes. And of course that leads to a whole host of other things that you know, I mean with with the anxiety and I do want to kind of go back to that in just a little bit because I really don't think that's talked about enough with caregivers and the the anxiety and the depression. So, but when we first got the Dexcom just that burden was released of not knowing. Because I would check his finger, we were going to be going out for a walk, for example, and I would check his finger before we go. We're going out for a walk and five minutes into the walk. I would start thinking what's it doing now he's exercising, and it doesn't take much for a little kid. You know, for his it doesn't take much for anybody with type one for the blood sugar to go down quickly. But you know, I'm walking beside my son and his little legs are going three times as fast as mine are just to try to keep up with me. And I don't know what his blood sugar is doing now. Is it steady? Is it going down? What and just the not knowing was excruciating. Right? And getting the dexcom for me, at least it was you know, it is a fantastic tool for him. And it's a fantastic tool for our family. Because at least we have an idea of what's going on.

Scott Benner 30:00
The first two, the first impact that made on you was just the knowing and then you felt like maybe I could sleep a little bit because at that point seven months in without sleeping, you get a little weird.

Unknown Speaker 30:11
Yeah.

Scott Benner 30:13
You start losing who you are, you, you, you, you know, a lot. So last night's good. A good example for around here i got i get sick in an interesting way. I don't feel well, then I fall asleep. And when I wake up the next morning, I'm okay. And so I really don't get sick very often. And so last night, I'm trying to do some things around the house, I'm folding laundry, I'm making dinner, I'm kind of bouncing back and forth between the kitchen upstairs. And finally around seven o'clock, I'm out in the kitchen. I'm like, I'm thinking I'm going to eat now. And I just didn't feel well. And I thought my legs hurt and my feet hurt. Everything was aching. I was like, Oh my god, I'm getting sick. And so I kept pushed on a little more. And then I said to Kelly, I'm like, Listen, I something's I gotta go to sleep, you know. So I just, I just, you know, Kelly took care of things. And I just passed out. And but before I did that, I was still working on Arden's blood sugar a little bit. And I had a site that I should have bailed on sooner. And it was one of those sites where I couldn't tell if it was the pump or if it was her. And like I stuck with it too long. Yeah, so I'm there trying to figure out the food. I'm I'm starting to not feel good. It's later at night. And somebody said something to me. And I really did like snapped at people. Yeah. And Kelly came out to the kitchen. She kind of joked with me, I think to diffuse it a little bit. But I was like, trying like, like I was like I'm trying, you know, all the things that I usually am so good at about like being real fluid about the blood sugar and the insulin, all that stuff that I'm good at. As soon as I didn't feel good. And I was a little tired. I lost my ability to do it like a person. Yeah, you know, and and that's just one day. If you're living like that for seven months for two years, you know, for 10 years. That's just now you're just surviving. Now you're just now Your days are just not dying. You're not driving at this point, you know? Yeah. Um, so you were at that spot in just seven months. You were you were pretty shot.

Unknown Speaker 32:07
Yeah, yeah.

Scott Benner 32:09
Yeah. Well, I'm sorry. Because that sucks. It really does. I did it for two. I want to say the first two years. That's how I felt like the way you're the way you're talking. And then we got a pump, pump made things that they only made things a lot easier. And yeah, and I got her blood or you wouldn't see the move. That was the first time I got her a one C to move. Right? Because I was doing like eight and a half 981 C's for the first two years. Is that where you are in this for seven months? Do you or do you mind saying oh, gosh, I

Erin 32:37
don't remember. I think when he was diagnosed it was it was really high. It was like 12 Yeah. When we went back for the first time, I think it was in the nine.

Scott Benner 32:53
That just sounds right to be perfectly honest. Because you're, you're you're giving insulin after food. I think nines about the best you can hope for that situation. Do you perfect. Yes. Yeah.

Erin 33:02
Yes. So right. It really It wasn't until I think it was a little after we got the pump. And we kind of got our, our footing with all of that. I think we got the pump first. And then maybe like a month later, we got the the dexcom. And then we started to try bolusing beforehand, and just, you know, talking with him a lot more. And just opening up to all of that communication. You know that? Yes, you can have this, but I need to know that you're going to eat at least half. So I think that we probably started with, you know, bolusing for half beforehand, and then waiting to see if he would finish it and then bolusing the other half afterwards. But yes, the the getting the pump made things a lot better also. So when he was

Scott Benner 33:56
good, No, I was just gonna say that I I found my nerve with the Pre-Bolus thing early on, but something that I now consider to be the juice box theory, which was if I can Bolus for a juice box, then if I if she doesn't need a quick juice box will fit. Yeah, exactly. So and so I always think that way, even when I'm working on high numbers still today, if I look, if I look at a number that's stuck at like 180, let's say it's, I can't get it to move. And I think a unit is what she really needs to get this 180 down. There are times where I'll just bolts two units. And then because if we go low, we can bail out with some fast acting sugar. But if I if you kind of like you know nickel and dime the high blood sugar, it takes forever to come down. You know, and so you have and then what you realize if you do it a couple of times, wow, I thought I needed a unit. I really did you I did like need like 1.5 or 1.7. I never would have done that this that's how this blood sugar would have stayed at 180 all day. Yeah, you know, so and so. It's funny. It's something I've said in the podcast a number of times, but until I saw it Online, someone say oh, I, it's it's funny because I'm aware of myself being myself. But you don't realize it when you get outside out into the public. Like some people don't really know. I'm Scott, or they're just like, I listened to this podcast and this guy said this thing, you know, and I saw this woman say, it all changed for me when I realized I could just over Bolus for the, the amount of a juice box and then save it. save myself later if I needed to. Right I thought, wow, that's I said that. And this woman's talking like, this was like the, the combination of like, how, how it all worked out for and I realized that I stopped and thought about it. And I thought wow, that is really was such a big part of how I did it back then. I just wasn't thinking about telling it to somebody else at the time when I was doing it, you know? But yeah, I always think that like just until are you doing that more because you're he's five now and you've been through all this stuff? Is your a onesies? Are your blood sugar's Do you ride the roller coaster the way you used to? Or have you figured it out? Are you still, um,

Erin 36:00
I certainly wouldn't say that we figured it out, we have gotten to a point where we're able to not have as much of a roller coaster. And we're talking with him about what he eats when he eats. If his blood sugar is high, then we'll Bolus and we'll wait a little bit longer, sort of Pre-Bolus. And then maybe also suggest that you eat his proteins before he has carbs. And vice versa, you know, if his blood sugar is low, then Okay, we'll, I'll give maybe two gummies any fruit snacks that are his low treatment of choice? So

Scott Benner 36:41
if you throw that on, and then

Erin 36:44
yes, just you know, have maybe two of those will dose you for for your meal. And this is what we're having? Are you going to eat all of it? And that really has been that communication has been really key for us. And, you know, because in the middle of the meal if he says, Ah, you know, I really I don't think I want all this like, well, I asked you beforehand, you said that you would. So got to eat it. Okay,

Scott Benner 37:10
well, so do you. So when you get to that spot, like when he's like halfway through and he gets full? I mean, I think I've heard enough of what you said earlier, like when you tell him he's got to keep eating, that breaks your heart, right? You're not you don't want to tell him that you'd like to be able to tell him like Well, okay, stop eating if you're not hungry. But so do you ever consider just like shutting his bazel off for an hour to try to catch it that way? Like to trade the the Bolus for bazel? Kind of an idea? Are you not to that point, because that because that's what I would do if if, halfway through. And I if I gave her eight units for something, and she ate half of the food, and they might shut her bazel off for an hour. If she told me she wanted to stop eating and see what happens. Oh, God, me like, but that's

Erin 37:58
what we do. We do sometimes, but it's usually only when it seems like he's getting sick. Okay. Most of the time. He's, he's okay, eating whatever it is. there really hasn't hadn't been that many times when he's that, you know, halfway through a meal that I really don't want to finish it. And I'm not I'm certainly not going to force feed him.

Scott Benner 38:23
I just

Erin 38:25
said yes, I mean, we we have done that on occasion.

Scott Benner 38:28
Because that really ends up being first of all, I think that food ends up needing more insulin than you always think, you know, because people are so stuck and you know, I'll say it a million times I don't count carbs. I just look and I think this takes about this much. And let's get you know, get the insulin going ahead of the food. Add the food I heard somebody say online the other day the food works so much faster than the insulin I was like it's such a simple and yet powerful. Yeah, actually I have to do Arden's insulin right now hold on a second she pre long I had to say hello. So she was stuck. I put a new pump on at 930 she runs up to 170 we got it down she's 129 diagonal down right now. I believe that if I did nothing right now this 129 would continue on to at least 90 before level but I need a boss so I remember this morning putting a food in the bag and thinking this is like nine and a half years. So let's say 9.50 extend and then we're gonna do Hmm

Unknown Speaker 39:34
This is interesting, isn't it because

Erin 39:36
I think the last This is really interesting hearing somebody else do I think the

Scott Benner 39:39
last bolus is acting as a Pre-Bolus for me right now. I think she's gonna keep falling over the next 20 minutes. So extend Here we go. zero percent now and the rest over half an hour. So by the time she sits down by the time she sits down two thirds of the Insulin will be in the very first bit will be active. And I think she should be around at when she starts eating. Oh, and you and I are still going to be on when that happens. So that'll be interesting. We can we can check me. Of course now of course not. She's not answering. So now I have to go with okay and the question mark and then she's gonna be like, I have to answer you every time I saw something like that'll happen. More interesting as she gets older Eric, by the way. Oh, personalities coming.

Unknown Speaker 40:35
I'm not ready for this.

Scott Benner 40:37
Yeah, we have a boy so he might just be an idiot instead of a pain in the butt. If you're lucky.

Unknown Speaker 40:46
Because here we are currently

Erin 40:48
sure did trending up for some reason.

Scott Benner 40:50
Now see, now what do you That's interesting. So he's at school is five you can't text? Well, you could text with him, but

Erin 40:57
I text. Good grief. Okay, yeah.

Scott Benner 41:00
So what do you want to do here? So tell me what what's happened. His blood sugar is what? You know, there's some things in life you just don't think can get better. Pizza? Ice cream, right? You just think of pizza and ice cream. You think pizza is perfect. Ice cream is fantastic. You know those days when there's no humidity, and it's like in the 70s. You walk around, there's some nice sun, but it's not too strong. And you think why can't the weather be like this every day? It's perfect. You know what else used to be like that? I thought Dexcom I used to think this thing is fantastic. He couldn't get any better. It couldn't get any sweeter. It couldn't get any warmer. But then it did. And the Dexcom g six, it arrived like a sunny day. It washed over me like that feeling you get when the salt of the pizza hits you. When the sweetness of the ice cream melts in your mouth. Next calm JSX is new. It is way improved. And I didn't think that was possible. But it is it is better than the last model. It is more accurate. It works right away on day one without any kind of like, Oh, you know, sometimes people say whether g five like it, I don't really completely trust it on the first day, boom, right away. Auto insertion. it's painless auto insertion, I mean, legit, painless auto insertion. And it takes two seconds, you just, I don't even know you put the inserter thing on, stick it to yourself, you push the button, it's over. And then magically, the number pops up. And that's your blood sugar. Somehow Dexcom made ice cream sweeter, they made a warm, beautiful day feel better. And now all you need to do to enjoy those things. Go to dexcom.com forward slash juicebox.

Erin 42:56
So we have the Dexcom connected to my phone. I have a Pebble watch, which I wish that they were going to still make those but they don't. And my husband set up a Raspberry Pi display. Excuse me for our kitchen counter. Okay, cool. So, while we've been talking, I've been glancing at the Raspberry Pi. And I shouldn't have been glancing at my texts from the school nurse. So she and I text all day long. His classroom is literally right across the hall from her office. And which I'm extremely grateful for that he doesn't have to wander all around the school. She goes in to his classroom they the kindergarten class just eats there in the classroom. And she'll go in and check his blood sugar text me what his blood sugar was. And for snack and lunch and afternoon snack. Text me or how much she's giving. And if there any if there's any sort of change that I suggest and I'll send her you know that whatever changes and she's in the taxi you come back she said 135 before snack 18 carbs point nine units. milkshake is a hit. I sent the was it called the fair life milk shake. A little little one in the in the bottle. Okay, next complete four minute snack. I think that's a record. So he's trending up now. We haven't had this milkshake in a while. And I honestly did not remember what it does, but I think it's a if he drank it pretty quickly, it's

Scott Benner 44:44
gonna hit a little fast. And so so did she was it because you weren't responding to her texts or does she not Pre-Bolus and does she do it after he eats still?

Erin 44:53
No she she Pre-Bolus is that there's not usually much of a Pre-Bolus There's not a whole lot of time between the when she gets the insulin and when he starts eating the snack.

Scott Benner 45:05
How positive Are you of when that snacks gonna happen? Like was like 135 and a milkshake coming? I mean, you could have Pre-Bolus. And he could have started drinking that milkshake when he was 90 and you would have been still really kind of golden, I think.

Erin 45:24
Right? Yeah.

Scott Benner 45:26
But is it does it? Does it always happen at the same time the snack

Erin 45:30
around the same time? They're they're usually not usually they're there sometimes, you know, program that happens at school that delays the snack.

Scott Benner 45:39
So is that something you're comfortable doing at home? But you haven't you can't translate to school just quite yet like the at home At home at a 135 at home. If he was going to have waited waited, you would have like gotten his butcher going, going to write it down. And then you would have liked to introduce the milkshake at that point.

Erin 45:56
Yes, we would have waited, I would say maybe 10 minutes, or actually it was it winds up being a little bit longer. Because usually what we do is I give him the insulin, and we set a timer. And then I asked him to go to a party and wash his hands. And so that's, you know, kind of a Slowpoke. I love him. But he is.

Scott Benner 46:17
But that's good. Because it gives you time and he doesn't feel like he's being restricted to that one.

Erin 46:20
Yes, it just kind of build it in.

Scott Benner 46:23
Yeah, that's fine. That's really good. I love the way you think about that. Because if you if you give it a little consideration ahead of time, then it's not a situation where he's sitting there staring at this milkshake going. Well, yeah, I can't believe I have to wait for me to work because that sucks, right? You know, and that's where you cause conflicts with food, too. Yeah, well, and so if you can just give it that kind of consideration, I do try to do that as well. And I think that I do it more than I talk about probably. But you know, just the idea of getting things going in the right direction before because you don't know how it's been a while since we talked about on the podcast. But this whole thing, at its very basic level is the balancing of, of the insulin in the carbs, right like so. I think of it as a tug of war between the carbs and the insulin. And you don't want either side to pull first. Because if you do, then their momentum is going to win, you're never going to, you know, if you if you get into a tug of war match, and you let the other side pull first, even for just a couple of seconds, they're gonna yank you off center, and you're going to spend the whole time fighting hopefully to get back, but you're probably going to get pulled on your button to lose, right. And if you dump if you have nine more people run behind you start pulling, all you're going to do is yank them over and you're going to end up being 20 feet farther, the new one to be back again. And, and so you can't just need to start equally, you need and the way that happens at the moment with the way insulin works is you have to get the insulin in and get it active. So that when the food starts working, that tug of war happens and both are pulling at the same time. And it's it's I guess easier said than done maybe much more easy with a dexcom CGM being able to look at the data. Exactly. Yeah, I mean, I don't know how you would I don't know how you are helpless that honestly, it's, it's, um, it's, it's it but at the same time, you could, because you're thinking about it in a five year old, right, like in a person who might stop eating who but but people who are a little older have a little more body size adults, we use that you'll see in a couple of years that you won't even care about the data that's on your Dexcom as much because you'll you'll you know how to expect what it's doing. Which is an interesting thing. Like you'll eventually just know what's happening, like, and so because everything you heard me do with Arden's Pre-Bolus isn't based on anything, except except my knowledge of this like, right, it's not like I used math or or, you know, science or anything I just looked and I said, Okay, this is what's happening. I know what I did, here's what I expect to continue to happen. If I do this with the new Bolus, I expect it to do that. And then I have to trust the time and she's actually going to go sit down, eat, maybe with a five year old, that would be scary with a 13 year old, it's not as scary. If it was a doll, it's not as scary. There's plenty of people out in the world, who are doing things like this with with pens and nothing else. But they're also comfortable in that in that space. It's almost like I always tell people when you're negotiating for something that you know, whoever after after an ask is made whoever speaks first loses. So if I say to you, I want to pay $1,000 less for this car. And you're the salesperson, if you speak first you're going to say okay, if I speak first I'm giving up. And so and so that's kind of a basic kind of concept of that. And I think the same thing, sort of about all this, like you know you have it, how do you not speak first in that situation? You have to be really comfortable in the in the uncomfortable silence. And so if you can be uncomfortable and then not knowing what your blood sugar's about to do, you can still do these things. Okay, you tested 135 and didn't have a CGM and you thought I'm going to eat 10 minutes from now i'm going to give myself my insulin now nine times out of 1099 times out of 100, that's going to be okay. And so that's the other side of it, which is you can't let the data you can't let your knowledge of what might happen once this month stop you from doing it the other 29 days. And I think that you and people who are newer to it can get stuck in that spot a little bit like,

Unknown Speaker 50:29
I can do that. You know, I'm

Scott Benner 50:30
saying designer, that was a long way to say that, but, but I wonder if that makes sense is like sometimes, you know, I don't know if you you know, I don't know what there's a million different ways to say you walk out your back door 100 times you never trip and the one time you trip, you now know you might trip on that step. It doesn't stop you from walking outside ever again. Right? But But sometimes you see one bad low, and then everyone backs off. And I'm like, No, don't back off. Assume there might be one bad low every hundred days. Right? You just built build in your plan for that. Don't let that make you comfortable with higher blood sugars to begin with. Not that you're doing that right now. But it just made me think of that. So and this podcast is nothing but a stream of consciousness. So

Erin 51:12
that's okay. You're gonna

Scott Benner 51:13
say things when they come up. But yeah, I think that there's, there's a million there's I listen, that sounds perfect. For me. I think what I get out of it is amazing. But I do see where sometimes it scares people. And and that's where you have to have the nerve to live in the silence a little bit like,

Erin 51:28
you think that it scares people because of how much data it is?

Scott Benner 51:33
Well, I'm not sure that's that way. For some people. I just mean, like, once you've seen a low happen in front of you, I wonder, then some people are just like, Okay, I'm just gonna, I'll err on the side of caution. Again, I'm saying, once you've learned how to balance the insulin, you're and you're bold about it. If you get one low, like truth allow, but but don't let that change what you did, because you had one low in hundreds, if not thousands of diabetes decisions over the last month, one time you got like, Don't Don't make your decisions off of that make your decisions on other stuff.

Erin 52:06
I definitely agree that having the dexcom has made me able to be more bold about especially at night about dosing insulin and to bring down an impending high or a high and, you know, trying to make the decision whether to Bolus or set an increase. And that definitely has helped. And actually, right now I'm texting his nurse to set an increase on his pump

Scott Benner 52:33
for his tablet like a Temp Basal increase. Yes, like a half hour an hour. What will you do?

Erin 52:38
I'm probably going to do half an hour.

Scott Benner 52:42
Just because the milkshake got a little ahead of you know, yeah,

Unknown Speaker 52:45
that's very good.

Unknown Speaker 52:46
That's excellent. Or straight up.

Scott Benner 52:49
See now, I'll tell you, little kids obviously different. I mean, the way you think about it, the minute Arden after food, if she's 130. And heading up, eyeball is more. That's when I start that's when I start thinking about stopping the arrow. Because Because, you know, and and will that bite me in the butt. Sometimes every once in a while. I'll see like, one hour straight up, and I'm like, ah, more insulin. And then five minutes later, it levels off and I go, ooh, oh. Oops. Well, no, no, I just did I'll just trade out the bazel. Like, so I don't bolus enough that I can't get out of it didn't really mean so like, say I put in another young like 135 straight up what has happened, another unit, where most people are like, really? And I'm like, Yes. And then it goes to 138. It levels right off. And I'm like, ooh, I wonder if that would have just happened anyway, without the bullets it would have. But Arden's basal rate is 1.5 or 1.15 for an hour. So right now I'm just going to shut off for an hour. Do you have any idea how many how often 20 minutes later, I have to turn it back on again. Like Like it's it's that it happens more frequently. I think for the most part, people are using less insulin than they need to be. And so once you start using more, you'll be surprised how often nothing bad actually happens. Then you go Oh gosh, this is the amount of insulin I supposed to be using. Right. I'm airing airing erring on the side of caution. I should be that I need this since one here. But like right now, so she's it's one. Let me take a look here. So I told you I thought she was gonna continue to drift down off of the bullets that I gave her an hour ago. That was an 1123 it is 13 minutes later. She's four minutes away from eating and her blood sugar's now 111 diagonal down. And so 13 minutes in is half so nine and a half units. So basically four and a quarter of the units are in her now. And they're going to start activating soon. You know, they're going to start actually working soon but I've got the bullets from from getting the 160 or the 170 down to where it is. Now I've got these 15, you know, this half of this 4.2 is in it starting to work. In the next five or seven minutes, the rest of the other 4.2 is going to be in, she'll start eating, the first 4.2 is going to start working, she'll put in more food, the other 4.2 will start working. And by noon, she's going to be at five. And that's and, and it's not magic, right, and I'm not a guru, it's just, it's just, it's just, you just have to pay attention to it, like, you know, look and see, I did this, this happened, if I would have done this, I bet that would have happened, and then just sort of go with that it's just a very basic, it really is a basic formula. It's, it's if if that then this if then you know, and that's pretty much it. Like there's, there's not a lot to it. If you can see it, obviously, and if you can trust a little bit and and I think that's the best advice I got

Erin 55:58
on mobile learning to trust the Dexcom more, it's taken me it feels to me, like forever to get here to be able to trust it. But

Scott Benner 56:06
you have to I say to people all the time, you have to be able to believe that what you know is going to happen is going to happen. Right? And it's a it's a it's a BS kind of statement. But but it but it's true. Like, you know, I do this, she eats this, she goes up. The next time I do that I can't go well, what if it doesn't happen this time? You can't do that. You have to say it's going to happen. And the one time it doesn't happen, you go Hmm, I didn't happen. But I think that, but that's very infrequently. You know, once you just have to learn historically, like, I know this is going to happen. And then but then the next step, like you said, is trusting yourself and actually doing it then. Right. So and you're getting to that spot. So what what do you consider, like after he eats? What's a blood sugar that you're now like? I've really botched this? Because before you were at 400 going, you know when he was first, you know when he was first tournament? What does that number for you now where you go, Oh, I wish this would have went better.

Erin 57:06
Now it's a lot more about the direction and speed, I guess. So we have his Dexcom parameters, at least, we've actually got it set a couple of different ways, like on my phone and the Raspberry Pi are set at slightly different levels. Because when grandmothers come to watch him, we need for the low alert to be at 100. So to give them a little bit more time to check just because they're not as familiar with everything. So but on my phone, I've got things set, the low is at the highest 170. And I'm I'm constantly looking at it before then. And just kind of judging Okay, you know, he's at 150. Is it? Are we going up quickly? Or is it leveling out? Whatever? And then, you know, from there trying to decide what to do next.

Scott Benner 58:03
Do you? Could I at some point talk you into on the weekends changing the 170 to 130 or 140? Yeah, I think we could probably do that pretty soon. Because Because here's the thing, and I know you're not doing this, but if you give it You're giving me the opportunity to say it out loud. Nothing makes me crazier than to see people say, Oh, I have the high level on my Dexcom set it for 100. Because I don't want that thing beeping all the time.

Unknown Speaker 58:29
Oh, gosh.

Scott Benner 58:30
I'm just like, Oh, wait, why'd I The other day I saw it. I found myself thinking Imagine if you had a I don't know a problem in your house with carbon monoxide. And you had a carbon monoxide alarm that you could either have it go off when it you know now when you can do something about it or later when you're going to pass out and die in your house. And you think well, I don't want to hear all that beeping. And so so you know, your problem is you have a carbon monoxide problem your house you need to you need to fix it, fix it, like maybe your fingers dirty or whatever it ends up being to say that you have an alarm that's meant to tell you something that you don't want to tell you something right even ignore is insane. And so and so what people do is they use Well, I use my Dexcom for Lowe's. And and I'm like, Yeah, but you get the lows. Because of the highs. I heard somebody say it the other day, it made so much sense highs cause lows, because eventually you dump on this insane amount of insulin and you get low. So never get high never have to use all that insulin. Right? And so when when your blood sugar's 121 30, you go, Oh, let me just bump a little bit here and it comes right back again. But if you wait until it's at, you know, 250 you're already in the fight. And for you, I think 170 puts you into the fight too, because of how little he is, though. Right? And so if you, you know, not that you'd want to, and I think this, I think that when you react at a lower number, people might think that that sounds like a lot of work. I think it's less work.

Erin 1:00:00
I agree and I yes. And I think it's it's taken us a while to sort of step down. I don't even know what the what the phrase is for that. But to realize that, yeah, that we can go ahead and act a little more quickly at a at a lower number with less. What do you how do you balance though? The exercise? Because he has, you know, recess some days he has PE and then he'll have a second recess?

Scott Benner 1:00:27
Yeah, yeah. I mean, it's, it's easier now that she's older, obviously. But I've also put a lot of effort in the past and the like going in, in the summertime before the year and going, look, please don't give me Jim right after right before lunch, you know, like, or something like that what she had last year, we were Pre-Bolus. And while she was out, she had recess before lunch last year. So we were pretty ballsy while she was outside. But she doesn't have any more. It's funny, I mean, to say something completely, that's gonna sound ridiculous. But I don't really think about the exercise that much anymore. I just, I just continue to do what we're doing, then. And so if you need less insulin, or more carbs, or whatever it is, we just keep going. I mean, it's recess at school, she's not climbing a mountain, you don't mean like she's outside running around throwing frisbees at a target or something silly like that for gym class. But if you have a kid who just a little bit of exercise makes them come down, yeah, then you need to, I would set up a Temp Basal, you know, the 40 a half hour or hour, but however, your insulin works for you, prior prior to bring his bazel down so that he doesn't have a ton of active bazel while he's a gym,

Unknown Speaker 1:01:39
or a reasonable.

Scott Benner 1:01:41
And, and I would try that first. There's been other things, you know, we had the one year where no matter what we did, it was just that time of day, where she was going to be lower. And so she would just get to the gym and like pop a couple of fruit snacks and go to gym. Right? You know, like, I think you just have to look at the specific situation. I think there's a big there's a big feeling that there are static answers to any of these questions. Okay, I think within the the community, everybody's like, tell me what to do. And I think it stems from the 15 carbs 15 minutes walk,

Erin 1:02:18
I was, I was gonna say exact same thing, which is

Scott Benner 1:02:20
his bowl. It just, it just, it just, it makes people think that there's rules for things. So when you add so when you ask me, What would I do for this, what I would do for this is keep your blood sugar and range. But But and but I would use the multitude of tools that I have to make that happen Temp Basal, a little bit of carbs. You know, just like thinking ahead a little bit about it, you know, and and these devices. The next upgrade you see to like I know about ami pod I know about Dexcom. And I don't know that we're allowed to speak specifically about everything. But there are going to be multiple bazel rate days coming up for people like it's not just going to be like you're going to be able to weekdays bazel rates and week that you'll be able to have a Monday base or a Tuesday off or you're going to be on Dexcom you're going to be able to set I want to have alarms here on at this time of day. And

Erin 1:03:18
that's what been one of the things Yes, that we've been we love that account. Absolutely.

Scott Benner 1:03:23
A little more user definable. Right. And so I really believe that that is coming. And so and once that comes stuff like that gets easier, because because then you get to say, you know, I know he has Jim on Tuesdays at 11. So on Tuesdays starting at nine, I want to know when is blood sugars this instead of this. And then when it gets to that I'm going to cut this bezel off for 50% for an hour or, or whatever, or you know, you know, I've had arting Chapa Jim and her blood sugar's at. And I go like, dude, you know what you're doing? And she's like, I don't know, we're playing, you know, this. I'm like, Okay, well, that sounds anaerobic. Shut your Basal off for a half hour.

Unknown Speaker 1:03:59
Yeah, you know,

Scott Benner 1:04:00
and just let's try to let's try to get lucky here. Like, like, I don't plan for disaster, I plan for success. And and so I just think that that's a in the end, once you've got the tools, right, you know how to use them. You can't plan for something to go wrong. Like if you just stop and think about your whole life. All the decisions you've made. You wouldn't own a home, you wouldn't have a car. If you plan for disaster. Nothing, nothing good. Whatever happened. Yeah, yeah, you let the fear stop you. Yeah, you just always be curled up with your hands up thinking somebody's gonna punch me in the head. I just want to cover my face. You need to want you need to want to get hit. You need like you need to run into it not not not shy away from it. So I think that my answer is I would just do what you've learned and make your good adjustments along the way. And you'll and maybe it'll go wrong one day, and then you'll and then you'll say, Oh, I did this. I should have done that. And then you're back to that that equation of I did this this happen. Next time I'll do this and before you know it, those experience As pile up in a way that you just start making these adjustments like mindlessly almost you don't even think about it anymore. You just like I talked through Arden's bolus because you were with me and we're recording the podcast but right, I never would have done that. Like I would have just, I would have just given to the bolus really quickly and told her do you think Yeah, and right now she's 102. And I'm still on a diagonal downtrend. So she's actually a little higher than I thought right now. But I can see the bend in the Dexcom line is starting to come around like it's gonna go off in a second. But as soon as it tries to level off, the rest of the Bolus is going to kick in. So my goal is I want her blood sugar to continue to go down over the next 10 minutes. You know, I think some people would hear well one of the two this is this is amazing, you know, and I'm saying no, because here's the thing you don't know. me get a drink. In Arden's bag today is a grab bag of Doritos. A full a full size banana, a half of a bagel, a giant bag of grapes, a carrot and yodels. You don't eat that stuff and have diabetes unless you are unless you are being bold with insulin. Okay, so you need to you need to like be you need to push to make that happen. I brokenhearted last night saw online, woman's kids poor kids graphs all over the place. You know, I don't know what to do. I don't know what to do. One person comes in and says just feed him low carbs. And he'll be fine. And I was like, oh, that wasn't what she was asking. You know, like, I

Erin 1:06:36
don't care. In fact, a big, big topic in our community.

Scott Benner 1:06:39
And I don't care if people want to do low carb. They absolutely can. But I agree. But don't be like, hey, let's wait. Don't forget, push it even like, Let's wait till she understands what she's doing here. And once she understands it, if she wants to do low carb, that's fine. But you're basically telling her, this isn't doable with insulin. But it is it's simply do I'm doing it right now in front of you. And so and so it's very doable. And if she if she learns the right steps, and and it and she doesn't want to do it, then she she should try low carb, but she wants to try look arbitrary anything else she wants to try?

Erin 1:07:15
I'll completely agree with with that statement. Yes.

Scott Benner 1:07:18
First understand how this works

Erin 1:07:20
exactly as we are. I think that low carb has been a good thing for a lot of people. But I really want to get to a point where if he wants to go out with his friends when he's 14, and they're going to go to a pizza place, then he knows how to handle it and can bolus appropriately. And if he later on decides that he wants to do low carb or either thing cool. Okay, good. Sorry. I just I saw that there was a little icon that was suddenly gone from my screen, that if he decides to go low carb later on, and it's his choice, then that's fine, too,

Scott Benner 1:08:02
right? But I always worry like, what if you don't teach somebody how to use insulin, and then you're able, you're controlling them because they're a kid. I mean, it's so easy to control a kid, right? Like, you just give them the food, they don't have a job, they don't have a car, they're pretty screwed about buying food on their own. So you don't see if you if you do it, then they'll do it. But what happens if they go to college, and they're just like, I'm not doing this. And now they have no tools and no perspective and no historical data to help them make these decisions. So if once you understand it, that's fine. The problem isn't that the problem is that nobody teaches you this stuff. Like, you know, nobody tells you, the insulin isn't like a light switch. They just give it to you, you know. And once you understand how to use it, then it's a different situation, you might still struggle with it. Or maybe you can't find the courage, like we talked a lot about that today, like the courage to just sort of do it. Maybe you're maybe you're the person who the anxiety ran you over or you got depressed and you can't dig your way out of it now, like I get all that maybe you need to do something drastic to level things out. I gotta tell you, I have some speaking engagements coming up, Aaron, I'm gonna be on low carb pretty soon. Because I need to get rid of a little bit of what I'm seeing here is a double chin. And so but but but you know, but so everybody's different. But overall, when you're just talking about people, we're just trying to figure it out who aren't burdened by these other billion things that could come up with diabetes. Right? Let's let's try to help those people first. You know, and we're way over an hour, but I want you to talk for a minute about you because you said you want to go back to it and I never I never did. Did you? Did you find yourself depressed after his diagnosis?

Erin 1:09:45
Yeah, absolutely. It really honestly. I didn't even know that I was depressed. And I have to say that it wasn't even until this past May That I kind of came to terms with, you know, I was having panic attacks. And I honestly didn't know what was going on. And it was a pressure that I put on myself for, you know, trying to do all of this, right and perfectly. And that's laughable because it's not perfect it is, as you have illustrated, it is doable. And you can have excellent numbers and eat the things that you want to eat and do the activities that you want to do. But it's not perfect. Right. Right. And it's not going to be perfect. It's never going to be perfect. Yes,

Scott Benner 1:10:47
absolutely. I I don't think I said, say this enough. So let me just be clear about this. Like it said, at the beginning of the podcast, I had a bad sight that i i bet on too long. And so in the last 24 hours, well, now it's been for the last year, like, everything's been fine now in the last three hours, but the 24 hours prior to that I didn't have Arden's blood sugar under 130 once, and we were always stuck at 150 or 180. And we were boasting like crazy and nothing was working. We so should have bailed on the pump sooner, and we didn't. But But, you know, it was an entire day where it just didn't go well. Right. And I don't I can't imagine if that happened. I didn't have the tools that I had. And then it happened again, the next day, how quickly it would, I would think to myself, well, I guess this is what it is. Right? Then you're still stuck with that feeling of I don't want this for my kid or myself. And then the anxiety starts to pile on because you don't know how to do it. And then you get depressed because it's not working. And it is something like when you're thinking about this stuff, like let's not like lose sight of what what it is you're considering as as, as a mother, you're, it's you're you're thinking about the short and long term health of your child. Like it's not just numbers, you know, so panic, how did the panic attacks kind of show themselves what what would happen?

Erin 1:12:06
It was really random, I was on the way to pick up my daughter from her school, and driving in the car, and I drove past sign that showed the date. And I just I started crying. And it was there, the date has no relevance whatsoever. It sounds really, really weird coming from my mouth right now.

Unknown Speaker 1:12:30
And you were just like September 30.

Erin 1:12:35
May 9, I pulled up into the car line to pick up my daughter. And I couldn't stop crying. And I've you know, I've been realizing that you know, okay, this is this is not normal. And I was in the middle of texting my husband. And I'm going to say, you know, I think I need to go see a therapist. And it's just really weird. Some of the things of thoughts that cross your mind your mind anyway. And that will you know, I don't need to do that right now. I don't want to interrupt his day, he's going to worry. And you know, I can hold off. I'll just talk to him tonight. And one of my friends who was in the car, a couple of cars ahead of me got out of her car and came over to me and I rolled down my window and she just asked Are you okay? I had to say no. Sitting you're pretty sure I'm pretty sure I'm not Yeah, bawling my eyes out over I don't even know what may 9 obviously,

Unknown Speaker 1:13:37
night. Yeah,

Erin 1:13:39
exactly. And I you know, just really thank her for coming in, you know, trying to see how I was doing. And as soon as I rolled my window back up, I sent my husband the text, because I said okay, well, obviously, if people are getting out of their cars and carline is to ask him I'm doing I am not okay.

Scott Benner 1:13:59
I'm not holding this together nearly. And so what I did was how much value Did you find in Did you go to therapy at some point then?

Erin 1:14:08
I did. Yes. I went to my primary care doctor, I think maybe just a couple of days after that and described to him, you know what was going on. And he went ahead and prescribed Lexapro, which I'm not ashamed to admit, it's, I've gotten back to feeling like me. And from there, I found a therapist. And that has really helped. And just, I have to say that you talked about reaching out. And going through all of that. being diagnosed with depression. and communicating with the diabetes online community has all been part and parcel for me knowing I am not alone in this, which you had mentioned earlier, too, it is so incredibly powerful. Just knowing that there's somebody else out there who has dealt with this, and is dealing with this, and that you've done this for years now, and you are looking at her numbers, and you are being able to more finely tune what you're doing. And you're teaching her to do that. And you're passing that on. Knowing that you've been there where I am, is so, so powerful. And I want to I mean, that's the reason I wanted to come on the podcast in the first place, is to just let your listeners know that they are not alone. There is always somebody out there who is willing to listen, and who has experienced a very similar things. And who can relate. And dealing with all of this is enough. You know, the the constant highs and lows, the questioning, am I doing this right? What do we need to do next? All that is those decisions every single day. That's enough, no one should ever have to feel like they're alone, dealing with that on top of everything that they have to do.

Scott Benner 1:16:20
Well, I'm very glad you found the other people because it is it is easily the most important step to the whole thing. It just to see somebody doing it ahead of you. gives you the feeling like it's doable.

Unknown Speaker 1:16:33
Yeah, you know, so

Scott Benner 1:16:34
instead of this massive, uncountable number of uncertainties ahead, it's okay, here's a lot of stuff I have to overcome. But apparently it works. It happens for people, you know, so there's no reason to think it can't happen for me too.

Unknown Speaker 1:16:47
Yeah, exactly. Instead

Scott Benner 1:16:48
of the opposite, which is I'm never going to overcome any of this, this is all going to end in a giant trash fire. And I'm going to kill and I'm gonna kill my kid. Right. So, which is really probably the pressure that you were feeling, you know, and it's, it's, you know, it's overwhelming to think that you're just your one voice, but that this happens to so many people. And, you know, I'm gonna go out on a limb and say that at one point, I was overwhelmed as well. You know, nobody told me I didn't get a diagnosis or anything like that. But I know for sure that I was crying in the shower a lot. So that that probably isn't okay. And, and so I don't know, it's just, it's, it's really I have to thank you so much for sharing that because it I think it is the conversations like this are the ones that are the most valuable to people. Because, you know, not enough people are open enough about something like this. So

Erin 1:17:41
we really well, and I really, I really feel like that a lot of the caregiver situation is often overlooked, because we're so focused on trying to care for our kids. Yeah. That, you know, like they say, in the on the airlines, and you have to put your own oxygen mask on first. And it's really true. Because if, if I can't get my head together, in order to be there for my son to teach him, you know, what he needs to do and to help, you know, to manage his blood sugar day to day, then I'm not helping him.

Scott Benner 1:18:16
Yeah, it's, it's, it's being so incredibly like, focused today. But burning yourself out, then what was the point of that? Like, what was it's almost like the no carb? Like not eating carbs thing? Like, okay, sure. Today, it's okay. But what about tomorrow? Right, you know, and you have to plan. This is a this is a long term thing. You have to plan big. You don't I mean, you can't you can't just worry about today. You it's it's got to be, you know, whatever the it's a it's a What is it? It's a it's not a sprint, you know,

Erin 1:18:47
that whole marathon, not a sprint, right? So if we have a lot of things in the diabetic community,

Scott Benner 1:18:54
these things are all very helpful. And at the same time, I don't know if you know, I saw But well, let me say goodbye. First. I'll tell you one other thing that because we've been going on so long, I have to actually stop the recording. So

Erin 1:19:05
I there's one more thing I do want to do is that if you don't mind me plugging, I started after this diagnosis, depression. And I started up a blog called Sugar Rush survivors with a friend of mine, who was diagnosed in her 30s. And we just really want to be able to provide kind of a counterpoint of an adult dealing with type one and parent of a child with type one. And just the discussions that we've had together because we we came together, we didn't know each other before. We kind of bonded over type one. And we both learned a lot from talking to each other. She didn't have a pod or Dexcom before we started talking and I've learned from her how a lot of things feel because You know, my son wasn't able to tell me all of that. And so we want to be able to bring that sort of reaching out, you know that, just that saying that you know that you're not alone and being a being someplace where people can go to read, you know, what our experiences have been read linking to resources like your podcast, and just showing that there are other people out here dealing with this and Friday.

Scott Benner 1:20:32
That's excellent. I'll put links in the show notes to it so people can find it, maybe I can get you to write a blog post

Erin 1:20:38
for my blog middle, I would love to

Scott Benner 1:20:41
talk a little more about it. Well, thank you very much for coming on. And

Erin 1:20:45
thank you for having me.

Scott Benner 1:20:47
My pleasure. I'm gonna stop the recording. And then I'm gonna tell you one more. You can check out Aaron's blog at Sugar Rush survivor's calm, there is a link in the show notes and she is going to write a guest piece for ardens.com. Thank you so much to Dexcom and Omni pod for sponsoring the podcast. There are three very important things that bring you this podcast every week. Sponsorship that allows me the time to do it. And you guys sharing the show with other people so that it continues to grow. Guys, listen to you understand that what you're listening to today was probably recorded five months ago, right? At this point, the podcast is become so popular, I have a lot of episodes, what they call

Unknown Speaker 1:21:26
in the can.

Scott Benner 1:21:28
So I'm going to slow down on my recordings in the summer. Don't worry, the show will still happen every week. But I'm not going to record as many so I can make the time between when recordings happen and when they're aired less. But I'm going to pick right back up in the fall September October and be recording in earnest. So if you're thinking about being on the podcast, now's a great time to reach out and get that ball rolling so we can get you scheduled. Thank you so much for listening for sharing for the great reviews on iTunes. And I'll be back next week with another show. Do you want to find out what next week is on?

Unknown Speaker 1:22:03
Hold on.

Scott Benner 1:22:05
Let me luck. I think next week is going to be Sam. Yeah, I'm pretty sure it's gonna be Sam. Alright, that's it, I'm babbling. I do have a fantastic joke about a three legged pig but this thing's already an hour and 22 minutes long. It's gonna have to wait for another day.

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Arden is wearing am Omnipod and a Dexcom G6 in this photo. Her Bg is 86 and she is on her way to the formal. To learn more about these devices use the links just above this picture. 

The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!