#303 Do Hard Things

For Adam and Alec

Anne speaks to Scott about her sons Adam and Alec, living with tragedy, type 1 diabetes and so much more.

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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
Hello, everyone, welcome to Episode 303 of the Juicebox Podcast. Today's episode is titled do hard things. And it's with an you're gonna get to know and in a second. Today's episode is a little, a little different than some of the other ones, in that it will handle the idea of tragedy, and we'll be having conversations about loss. Maybe you don't listen with your kids, maybe you want to, you should probably make that decision.

I don't even know how to talk about this. So let me do this. There's not going to be ads the way you think about it in this episode, I just can't i can't bring myself to put them in. But I do need to mention the sponsor. So this episode of The Juicebox Podcast is sponsored by Omni pod makers of the only tubeless insulin pump in the world. It is the insulin pump that my daughter has been using since she was four years old. And she is 15. It is wonderful. And on the pod would be thrilled to send you a free no obligation demo of the Omni pod right now, all you have to do is go to my Omni pod.com forward slash juice box and get that going, they'll ship it right to your house, you can try it on and wear it and see what you think. The show is also sponsored by the dexcom g six continuous glucose monitor Arden has been wearing the dexcom forever and ever. And we use the data that comes back from Dexcom for so many things. Just a few of them are insulin dosing, understanding when to eat how to eat seeing the speed and direction of your blood sugar. Knowing if you're falling it has predictive low alerts, it'll tell you that in the future, I expect your blood sugar to be under 55. It also has a share feature. So that the people who love you can see your blood sugar when you're not with them. So whether that's your child, or your sister, or somebody else that you care about, the user can share their data with up to 10 people. It's amazing. podcast is also sponsored by the Contour Next One blood glucose meter, this is ardens glucose meter, which is absolutely spectacular top of the world for accuracy. very portable without being too small. test strips allow you to take a second shot just in case you you know you go in for blood and don't quite get it the first time without ruining the test strips, you save money there. And there's a wonderful app you can get for your Android or iPhone, that pairs to the meter with Bluetooth to give you even more information to help you make good decisions. You can take a look at that at Contour Next one.com. And of course the podcast is sponsored by touched by type one. I'll tell you more about all the sponsors next week. But for now, check them out at touched by type one.org. It's dancing for diabetes, they changed their name, and you really should go check them out. I want to take one brief second to thank the good people who sponsor this podcast. Because without them, you wouldn't get stories like this.

Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. And to always consult a physician before becoming bold with insulin or making any changes to your health care plan.

I'm not sure how long this is gonna go before you make me cry, but let's find out together but I'm hoping, hoping No.

Unknown Speaker 3:47
Well, if I can get through it without crying.

Scott Benner 3:49
Hundred percent think we're both crying. But so just so you can so that you can be aware of what I'm waiting for. I'm really, I don't even know what to say about how how amazed I am that you are doing this. I usually start the shows by having people just introduce themselves.

Anne 4:07
Okay, my name is Anne.

Scott Benner 4:11
Okay, listen. So and I received an email from you. Probably going back to the summer of 2019 I think. And I'm, you know, your email started off so much like everyone else's. And you know, I'm sitting somewhere, you know, doing something and like, Oh, I get a note, I look at it, I start reading it. I'm like, Oh, this is a nice note. It's gonna be about a nice thing. And it was about a really nice thing, right up until it sort of wasn't and then my wife looked over at me and said, Are you okay? And I said, I just got an email. I don't know how to respond to it. So I guess let's start like this.

Unknown Speaker 4:59
You're mad

Unknown Speaker 5:01
I am okay.

Scott Benner 5:03
You have children,

Anne 5:05
three amazing boys, the youngest of which was diagnosed with Type One Diabetes in 2013.

Scott Benner 5:13
And that's Adam. Adam. Yes. So Adam was diagnosed in 2013. How old was he then?

Anne 5:19
He was eight years old.

Scott Benner 5:21
Okay. So why don't we just talk about his diagnosis? How did it go?

Anne 5:28
Sure. Well, we looking back on it. We think that it had maybe been going on for a while there were many. I mean, as is very commonly the story that were signs that in hindsight, we thought, Hmm, I wonder how long this had been going on. The weekend that we took him, the Monday that we took him to the doctor followed a weekend in which he had run in a parade. The there's a community prayed that we have the run was kind of a kickoff to the parade. And we would always have the boys run. It's about a mile run. And so all the boys did it. We met them at the finish line. And when Adam got to the finish line, he did the one bless his heart. But he couldn't he kind of he didn't collapse. He just sat down and he had a really hard time getting up.

Scott Benner 6:24
So then your other two sons?

Anne 6:26
Oh, yes. Well, the others two were just, you know, excited. They want to go see the parade. And Adam was just, he couldn't get up. So my husband and I looked at each other. My husband actually hoisted him onto his shoulders and ended up carrying him to our next point. But Adam was, yeah, we just it didn't we knew that it something didn't seem right. And so that was a Saturday, Monday, my husband, and I had decided that we were going to take him in just for a checkup. And our amazing pediatrician, I think, listened to some of the things that had been going on and immediately had him did a did a urine test to detected sugar in the urine, and at that very moment diagnosed him with Type One Diabetes.

Scott Benner 7:16
Prior to that, how long do you think you were seeing symptoms?

Anne 7:20
Well, it's really funny, because so at this was Adam second grade year, and earlier in the year, I want to say the fall, the his teacher had asked me, he said, is Adam getting enough sleep? He seems really tired. And, you know, I thought, wow. And apparently the teacher at one point had a conversation with Adam and Adam said, at the time, all three boys were sharing a room, or we had four bedrooms in the house. The boys shared one of the downstairs bedrooms, we had one of the downstairs bedrooms, and the upstairs we were using for a guest room in an office. And Adam told the teacher he said, Yeah, my brother's kicked me up talking at night. And as soon as so the teacher relayed this to me, and I immediately, I mean, within a very short time following that conversation, we ended up doing away with the guest room in the office, moved both of those things to another location and had each of the boys had their own rooms. So which I just thought was interesting. There was there were also a few instances of at Adam having that year, some unexplained stomach pain. And I don't know whether that was related to the the type one or not, but we took him in a few times. It's the point where he was literally crying and doubling over and vomiting. He was diagnosed and we took him to the ER at one point with constipation. And I don't know whether that was a sign or whether that was, I

Scott Benner 8:57
don't know, hard to look back and figure it out as it.

Anne 8:59
It is, it is, but it was early on in his second grade year that I think, you know, as far as our look back, when we kind of realized that probably was happening for a while longer. Wow,

Scott Benner 9:09
that's a that's crazy. So how did the the first couple of you know days and weeks go every year diagnosed? How did you find the transition?

Anne 9:21
Ah, we were in shock.

His diagnosis day, of course, was what we used to think of as the worst day of our lives. It was towards he was diagnosed in May. And it was towards the end of his second grade year. And so in my mind, I thought, okay, I'm, I thought I would go to his school every day because the school wasn't going to do any of his shots. So I thought I'll go to school every day and at lunch or you know, just be on call. I didn't live very far away and it was would have been easy for me to just pop up and do all the shots and so, and I you know, we thought okay, over the summer, we'll kind have transitioned him into doing this on his own. We had an amazing school nurse, who, at one point had bribed Adam

to do his shots on his own, unbeknownst to me,

he ended up actually within, I want to say the first week back to school following the diagnosis, he ended up giving himself his own shots. And learning how to do it much more quickly than I had anticipated. And, you know, bless his heart, he just, he stepped up, and he did what he needed to do. And so, you know, that that, obviously, it was a time of shock, I guess, to a little bit, but we transitioned fairly, fairly well, as far as you know, getting him to do the basics on his own.

Scott Benner 10:55
It's interesting, isn't it, that a person who's a little disassociated from the whole thing is he, it's a much easier path for them to say, Look, just give yourself the shot. And you're probably trying to protect him from whatever it is you're scared of, in your mind, or, you know, like, make him grow up too fast, or blah, blah, whatever it is, we try to protect our kids from, I guess, it's very cool that a nurse was able to just say, look, you know, you're probably gonna have to do this. So let's do it.

Anne 11:21
Yeah, yeah. Yeah, we greatly appreciate it that support right? Did you

Unknown Speaker 11:25
guys have

Scott Benner 11:28
Did you transition to a pump at any point, or glucose monitoring or anything like that.

Anne 11:34
Um, the glucose monitor and pump actually did not happen until after I started listening to your podcast in 2016. We had ordered a dex calm in following the highest agency that I'd ever we'd ever had with him in I want to say it was December of 2015. And we, we didn't have great support from his provider, the providers office is actually two hours away, where it was two hours away from the community that we were living in at the time. And so there wasn't a really, there wasn't great support there. They had briefly they had mentioned to it following the the one visit that we gone into where they told us the Adams agency, December of 2015, ish was, I think, 9.5. And I remember feeling shocked when I heard that

Scott Benner 12:33
was that a jump up had been lower, and it jumped on you.

Anne 12:36
It had jumped, it had jumped and there were, I think a few things that had led up to the jump. But yeah, it had jumped it was higher than it ever been. And it was kind of an afterthought. It wasn't even the provider herself. It was a one of the the nurse that was kind of checking us out of that appointment. She mentioned kind of as an afterthought, she's like, Well, you know, there is, you know, this continuous glucose monitor that you could try. And I just said, We I'm willing to do anything at this point. And so we ordered the dexcom, they shipped it to us. And I remember thinking at the time, I wish I had read so much more. I mean, again, hindsight, but I remember thinking at the time, gosh, this is gonna be something that actually sticks up, I'm him, it goes into his body, I don't want to, I didn't feel comfortable. Going through the process of putting it on him myself. I and so I, we received it in December of 2015. I waited until April of 2016 when I knew I could get an appointment and drive across the mountains without, you know, worrying about snow and that roads. I waited until I could get an appointment at at the Children's Hospital to be able to do a class to learn how to do it with someone else right there holding my hand.

So I had gold sitting

on a shelf for five months.

Scott Benner 14:01
You know, there's been a number of people on here who have talked about their insulin pumps being in drawers or their CGM still in the boxes. I don't think that's incredibly uncommon. Yeah. But you look back and you think, well, geez, get out. I'm interested. I'm interested in through this first number of years, where you feel like you're doing it's a very common thing for people. They feel like they're doing well, right, because people are taking their shots. They're counting their carbs, and but they're not having the results they're looking for. But they don't feel like I can't. I always have trouble making sense of that feeling of Oh, we were doing great. And like I was talking to somebody the other day who said, you know, my eight one sees nine but my doctor always tells me I'm doing great and I wonder like there's a disconnect there for me, but I do think they're doing great in one respect. I don't know why the sentence isn't usually Hey, you're doing great you're doing the things you were asking you to do and everything but here's the What we could try to do blah, blah, blah to move forward? Like, wonder why that part never comes, you know?

Anne 15:06
Yeah, the parts that always seem to come up in the visits with Aaron p would be, you know, meeting with her looking back, okay, six weeks ago from today at 415. Why do you think we have this spike? And I, you know, I just

Unknown Speaker 15:22
I don't know.

Anne 15:24
Yeah, um, yeah, I

Scott Benner 15:27
think it's too retrospective. Maybe Maybe it's they just don't have enough? I don't know, they're not able to make that. That moment to moment decision.

Unknown Speaker 15:35
Right. Right.

Scott Benner 15:36
All right. All right. And have we have we gotten to the part where we're gonna start talking about why you're on the podcast? I think? I think we have, I think we are. So you find the you find the podcast you give? I'm assuming that gives you kind of the courage to put the Dexcom on him. Can you tell me a little bit about that?

Anne 15:56
Yes. So I had taken the boys during our spring break, to visit my brother in Nebraska. And my sister in law kept, kept saying, I heard on this podcast, and she would go in and tell me something kind of fun. And she kept saying that over and over and over and I was fine. Like, okay, Jessica, what's the deal with your podcasts? And she showed me how to look at podcasts on my phone. And so it was that spring break trip where I'm like, Hi, I wonder if there's any podcasts on type one diabetes. And I immediately found yours just as the first podcast that I set up on my phone. I listened to dozens of hours. And this was beginning to mid April. And I knew I had the Dexcom sitting on our home. I knew that we had an appointment at the end of April to go to the Children's Hospital.

Take a class and help get that set up.

Unknown Speaker 16:49
We

Anne 16:52
Yeah, I mean, we got it set up. I got him set up with the Dexcom

continued to listen to your podcast.

I guess. Sorry. I'm getting teary already thinking about

Scott Benner 17:06
I'm, I feel like I'm gonna vomit if it makes you feel any better. So I've never been nervous making this podcast one time. So I'll help you a little bit. So you, you Adams at once. He was like up in the nines there. And you got some you listen to podcasts for a while you started getting as a one t coming down. And it was really a turnaround for him. His health was was moving in the right direction. And you felt excited about it. And And And how long did did you have that feeling? Like how long were you able to live in that that space?

Unknown Speaker 17:43
so

Anne 17:45
late April of 2016, we got him set up with the decks calm. And for the next several months, we had the most success that we had ever had. Since the time of its diagnosis. I came to be able to figure out things that you would talk about on your podcast like oh, when he's playing competitive sports, his adrenaline is skyrocketing, and hence his blood sugar's would tend to go up too, I'd start identifying things like that I started playing with his basal insulin, you know, being able to just make tweaks to give him the best shot for success. We actually ordered an omni pod as well, that came in late October. And so he had been using both the Dexcom and the Omnipod for

about two months.

And we had his next follow up into appointment on December 19th, which was the first day of Christmas break. We lived 30 minutes away from the office where we were going to be seen by the doctor is actually a telemed appointment because the doctor was in a children's hospital in Seattle.

So on December 19 we

got in the car. It was supposed to just be Adam and myself. But I worked in the community that the appointment was in and so the plan was Adams going to spend the day with his cousins. And my middle son Alec had begged and begged and begged to come with us. He the cousin Dave, the cousins are very close. I relented, I let Adam or Alec come with us as well. So I had Alec and Adam in the car with me. We were in route to his endo appointment. I was very excited. I knew that his a Wednesday we had had it checked in September it had dropped I was looking forward to seeing yet another job now that he was on both the Dexcom and the Omni pod, we are having great success. We did not make it to the appointment. The last thing that I remember is, we were driving and my car all of a sudden was not going straight. One of the boys asked me something. I have no memory of anything until I woke up in the hospital. I don't even know what day of the week it was. And I remember somebody telling me that we'd been in an accident, and the boys had not made it.

Scott Benner 20:36
Sorry. Um, how long? Was it between the accident when you woke up?

Anne 20:44
And the accident took place on a Monday and I don't, I have no memory of being in the accident. I have no memory of being picked up by an ambulance and being taken to the hospital. I think that my family said that they had tried to tell me several times I you know, obviously they had me pretty well medicated.

I think it was

the next day. I honestly don't know, I honestly don't know how long it was. That's just the first memory that I have. After the boys mark with me

Scott Benner 21:19
anymore. What were your injuries, like?

Anne 21:28
The I had fractures basically from head to toe, but they were all able to heal on their own, they didn't have to have surgery or anything like that I had a brain bleed, and

just very sore.

I was in the hospital for about a week, a little over a week. But everything, you know, everything healed up. And there was some nerve damage to my face. I still the left side of my face is still a little bit numb. But

nothing in compared to you know,

Scott Benner 22:04
I? I don't know how to talk about it with you. I I feel like what, what happened to you is probably I mean, it's got to be one of the worst things that could happen to a person, right? I don't, I can't as a person who has children, I I'm hard pressed to imagine something worse. I don't know, how you sent me that email or, or how you found the courage to come on and want to talk about this, I thought that it was a beautiful idea to talk about Adam and Alec a little bit and, you know, try to try to remember and give perspective to to that sort of thing. So I'd like to do as much of that as you're comfortable with. And if you can't answer a question, just say pass, and and it will keep going. I guess it's been it's been over three years now. Is that right?

Anne 23:01
Yes. It was three years this past December?

Scott Benner 23:04
Does it has it so far lessened in? In in? I'm assuming how painful it is? Does that get better?

Anne 23:16
Um, do you know grief, I think is just a very interesting thing.

Unknown Speaker 23:23
Um,

Anne 23:25
I cry just about every day still. Not to the point where I can't function. I, you know, I I'm fortunate I have a job that I really love. It's good to be able to throw my mental energies into something that I'm passionate about and that I enjoy doing. But, you know, has it lessened? In a way it seems like it was still just yesterday that this happened. There are moments where I just feel overcome. And I think the day that I sent you that email I just was having a moment and I but I just was overwhelmingly grateful as I was thinking about it. I thought you know, Adam, we struggled with managing his diabetes, you know, up until April of 2016, I guess. But I just so so, so grateful for the information that I was able to get through your podcast that I felt helped us give him the best chance at living in the best way possible for what we had no idea at the time would be his last few months of life. So does it get easier? No has it lessened? I feel like I'm moving forward without as much shock maybe not as much in a fog. But there are still moments where you know, I think and I think any parent who's lost a child would say you know and I anticipate this is going to be going on for the rest of my life. Where you just, you're overcome, you're overcome. How could this happen?

Scott Benner 25:06
You know, my son leaves for college. And for weeks and weeks after he leaves my wife and I will kind of comment to each other. It's hard to put into words, right. But the, the house feels different. I guess it's the way people put it. But there's there's a palatable sometimes it feels like air pressure to me, or I don't know how to describe how being in a space where he is, or has been recently feels different than being in a space where he hasn't been recently. And and it's I'm assuming that's as close as I can come to understanding what you're saying. You know, can I ask your you have a son, a third son? Who's with you still?

Anne 25:56
Yes, Andy, was not in the car at the time. And I think the only reason that he didn't come today is because he had basketball practice that day. He is now he was 15. When our accident happened, he's now 18. And he's a senior in high school. And so he will be going off to college. In a number of months,

Scott Benner 26:16
with you tied to his belt, I'm assuming

Unknown Speaker 26:19
a three foot rope, right?

Unknown Speaker 26:22
That lady behind you, Andy? Oh, it's my mom. And

Scott Benner 26:26
she'll be in class today. Yeah, how? I guess, you know, how did it impact him?

Anne 26:37
Andy is the most even keeled child, I think that exists. He obviously it, you know, going from a crazy, fun house full of energy to being the only one. It difficult, difficult for him, obviously. But he is the one that I feel like it's a strength, in a way it gives me strength.

You know, it, he's.

And I think I look back on it too. And I think, gosh, you know, the first couple years especially, I was so wrapped up in my own grief, it took me a while to realize I've, I need to be more present for him. I didn't really know how to do that. He has been nothing but gracious in dealing with my shortcomings through that whole process. But he is continuing on. And he knows that both of his brothers have left a legacy. And he is very intentional about wanting to live to honor those legacies. And so I just I couldn't be prouder of who he is, and who he's become. It's, you know, something that has happened to him. But he's written you know, in some of his personal statements for college essays and things like that, that it's not something that defines him. It's it's always going to be a part of his story, but it's not. He's he's not victimized. He obviously is going to be living with a big gaping hole for the rest of his life. But it's not anything that defines him.

Scott Benner 28:25
So the three of you are supporting each other. Because each of you has a different tragedy. Really, it's it's as I'm sitting here thinking about it. He lost his brothers and then contact with you for a while probably. There's just an overall change in what his life is. But then at the same time, you're dealing with losing Adam and Alec, and you're dealing with I'm assuming surviving an accident that they were lost in. But that's got to be has to weigh on you as well. Does it not?

Anne 28:59
Yeah, yeah, absolutely does.

Scott Benner 29:03
Yeah. I don't know if there's more to that question. It just it's occurring to me, as you're talking that, you know, that's got to be the next thought, which is, you know, I mean, it's survivor's guilt, right. Like, it's why me, why them not me, you know, etc. Like that? Probably, yes. That's a question that plagues me has plagued me every day for the last three plus years. It's just random. Do you seek have you in the past or are you now do you talk to somebody? Or do you kind of go back to your family for that support? How do you handle that?

Unknown Speaker 29:32
Yeah, I

Anne 29:36
did do some counseling for the first two years.

You know,

I think that that kind of ran its course I have some amazing friends who continue to be just a wonderful support.

Scott Benner 29:56
Can I ask you, before you tell me about your journal. Is it just honestly, something that no one else can really understand? Except someone who's been through it? Yes. Is that what you found through the counseling? That's kind of what I got in your paws, like, what am I talk to a therapist about? You know, you know, because I find myself in the same situation right now, like, I have nothing contextually, to compare to what you're talking about nothing. And so I would think that, trying to have that conversation with people who don't have that context, must feel frustrating and fruitless. And, you know, it's lovely to think that everything in world in the world can be can be explained away or gotten through or coped with, but I mean, I don't know, like, I I follow. I don't know if you've ever heard the episode with a woman named Linda hopper who came on years ago? And yes, and her her son passed away at school from, you know, and I follow her on Facebook still. And she's very proactive about remembering her son. And at the same time, I just feel like this is this is something that fundamentally changes your perspective on life. And I don't see anything else that could bend you back to where you were before? I don't and I can't tell that that's a bad thing. Or not? I don't actually think it is. I think it's maybe sad, right from the outside. But for you, I'm assuming you're not looking to forget your kids. And isn't that what Feeling better? Feels like?

Anne 31:44
Yeah, and that's funny, because I, I've always thought, I mean, since this happened, I don't want to feel better. You know, it's not even anything that I can really say, I need to make, I need to be able to make sense of this. There's, there's nothing to be made sense of. I, you know, that that that was part of what I kind of thought as I was going through the counseling is, you know, what, what is the point? I just need to be able to put one foot in front of the other. I want to live well, I want to live in such a way that honors their memories. That would honor them that would make them proud. But really there? You're absolutely right. It's possible to for I think, to understand this, I mean, you you think somebody that this has never happened to, you know, you think oh, this is the worst thing imaginable. And it is. You know, I I think that sometimes, you know, people will look at me, and they'll be like, Oh, you're so strong are so courageous. And I don't have a choice. I mean, I. But I think it's, I have come to know, more parents than I would like to know, who have experienced this type of thing. And I think there's just an instant bond that you have with people who have also lost a child or lost children. There's just you relate to them on a just a level that, you know, people other people are not going to be able to understand. Other people can sympathize.

Scott Benner 33:27
Go ahead. Does it feel like you're parenting their memories?

Anne 33:33
That's a great question.

Scott Benner 33:35
You know, you mean, like, I guess, from my perspective, I feel like I'm really connected parent, I really enjoy having children. And so when they're with me, or they're not with me, I'm always in some sort of a fluctuation of helping them or watching them for what they need next, and trying to figure out how to help that. Or, you know, and no matter what that means, if it's just listening or being there saying something or actually interjecting, like whatever it ends up being, I feel like that keeps happening. And when Cole went to college, I thought maybe that would happen less, but it doesn't. And I can't imagine I'm going to feel any differently when he moves out. Or that I would feel any differently if he passed away. I can't imagine that I would feel any differently about that. And it just feels like that's what you should be doing right like shepherding their, their legacy and, and still being parents to them. I don't know what else my life is for at this point. It's a very strange thing. I enjoy the things that I enjoy very much. But I don't know how I would feel if you could somehow flip a switch. Take me Take me being my kids parents away from me, but leave me the memory of my kids. I'm not sure what I would do with that. So I think that whatever, get your one foot in front of the next one is valuable. I think that you should 100% live a really long life with as much happiness as you can find. And be a terrific parent to Andy and, and I'm assuming your husband's together.

Unknown Speaker 35:23
Yeah, and

Scott Benner 35:24
and be, you know, be in that love in that relationship and all that other stuff but I mean, I would think that there'd be a way to live well, even. But I don't think there'd be a way to live. Like forgetting. You know what I mean? Like I I've had a lot of terrible things happen to me that I don't think about anymore. But I don't think this one could be one of them. I'm By the way, not for nothing, but how much better this am I then your therapist was right.

Unknown Speaker 35:52
I was gonna say you should go into grief counseling or something.

Scott Benner 35:55
Like, I should at least get 40 bucks for this. I just found myself thinking. And I, by the way, and found a way to put a laugh in the middle of this episode, which really is a bigger skill.

Unknown Speaker 36:06
That was that was

Unknown Speaker 36:08
that was amazing. I'm gonna blow my nose now. There you go.

Scott Benner 36:13
Holy Christ. Um, okay, so. So I'm going to go back to your note for a second. I'm assuming that as the days and the weeks passed, and, and people feel like they want to help you. I want to ask first, before we get into what actually happened to you, you know, and how community and friends and family got around you. But for anybody in the situation on the other side of it, what do people say that they think is helpful? That really isn't? That'd be a couple sentences and stick in your craw. Right? Sure. So I guess everything happens for a reason. Is that one of them?

Unknown Speaker 36:58
That would be one.

Unknown Speaker 37:00
God must have needed them.

Scott Benner 37:02
They're in a better place.

Anne 37:04
They're in a better place. Yeah, yeah. I you know, and I, that's the other thing is that? You I probably said stupid stuff like that? I don't know. Yeah. to other people. before this happened to me. I don't know what I would have said or what came out of my mouth? Or? Um, you know, I think you

Scott Benner 37:29
at least it's not cancer. We all say that about diabetes. So, right, right. And what is that that's people in a moment, uncertain of what to do with really well intended people trying to very

Anne 37:42
well intended. Yeah, and that's what you just have to give grace. Because people are there, they're trying to make you feel better. They're trying to say something is inappropriate as it might be, they don't

recognize that and that's not their intent. And,

you know, this is taught me to give a lot of grace throughout the last three years, but, you know, I, I truly am appreciative of the way that our friends and our community family have just rallied around us and continue to rally around us. You know, so yeah, there are definitely some things that you don't want to say to

a grieving person.

Scott Benner 38:24
So what is the right thing to do? If I were to have met you in the weeks and months after that, what what is the right thing? To do have been do you think? It What? What's the best thing you could imagine what what happened to you that at least didn't make you think, Oh, don't say that? Because I'm assuming nothing makes you feel better right? Now, right

Anne 38:45
now, there's no nothing could be said to ease any of the pain.

Scott Benner 38:50
So it's a it's it's just probably the quiet right? A hug, like a my hand on the shoulder like glance like those kinds of things are probably the only thing people should even be and And who are they doing it for? Are they doing it for themselves? Or are they doing it for you? right?

Anne 39:06
Exactly.

Um, you know,

it was even hard to have we had so many people around us in the beginning and I just, you know, at the very beginning, when this happened, I was just in a lot of physical pain, it was sometimes hard to have too many people around. Just I just I have my memories are so foggy of those first few weeks and I think in part because I had a bad concussion. I was on some medication. I think it was making me a little loopy. I just the whole first month was just, I have very little memory of it. Honestly. I do remember a lot of people. We had a lot of meals. We had a lot of visitors and i i just i was on autopilot. But during that time, I think that probably the most helpful thing as I, as I look back on it, the most helpful thing was hearing memories of the boys, hearing what people remembered about them. And we had a number of you know, cards and letters and that I've saved to this day, and we'll probably never get rid of. I think one of the most meaningful things was Alex, fourth grade teacher

sent us a,

I don't know two or three pages of just memories she was she was a first year teacher, the year that she had him. And she had journaled very consistently throughout that first school year. And she sent us two or three pages of just memories of Alec. And I, you know, I think more than anything, you know, somebody asked me what, what, what's the most helpful? Tell me what you remember about my boys?

Scott Benner 41:01
Yeah. Because there's this. Like, right now, you're, you know, right now, everyone we know is right now somewhere else living a different life. Like even if it's for an hour, or either at work, or Walter at school, they're having these different interactions, they're making memories with other people. And if you stop and think about it, there's probably an infinite number of those memories out in the world that you're not aware of. And so and so for people to come tell them to you a story is, it sounds wonderful, like I, it's no different than when you haven't seen someone in a while and you're like, hey, what have you been up to? You're asking, like, you know, what have you been doing? While I haven't been in your physical space? You know, I'm interested, you know, and so, so when all those people come in, and offer those things, that's the comfort but not in the beginning. Right? Like, we're not looking for a heartfelt Alex story in the first week or something like that we're looking for the people need to realize that this is if they're going to be involved in your life still, which you hoped they would be. This is a this is a long haul situation. It's not, you know, do you find that people just wanted you to feel better? And, like, did you have that feeling? Or could you not even feel that from other people?

Anne 42:17
Oh, no, we felt the grief and the shock and the prayers and the love and I mean, we we felt, yeah, we felt everything. And we continue to feel that I think sometimes, now that we're so far removed, I think some people think, Oh, I shouldn't mention it. I'll make her sad. I'll make her cry. And that's really the complete opposite. I want to hear their names spoken. I want to hear what people remember about them. I want to hear the stories. I don't want them to go unmentioned at Christmas dinners and thanksgiving dinners and

Scott Benner 42:50
birthdays and even if you do cry that those tears come from, like it's a happy memory then right you're not thinking you're not in that moment thinking they're not here you're thinking this is a happy memory.

Anne 43:02
Exactly. There nobody's making me more sad.

Scott Benner 43:06
Is it fair to say no one could do that to like, add to your sadness, like it is what it is right?

Anne 43:13
It is fair to say that yes. So I

Scott Benner 43:16
have a couple of difficult questions before not that every one of these hasn't been a difficult but I have two difficult questions I don't know if I'll even before we kind of move on I want to hear about how how Adams family at school spoke about him but it feels to me like I don't I'm not really interested in digging into this because I don't think it's what we're talking about. But I feel like if I don't bring it up people listening are going to wonder but how did this has this or how has this affected your marriage relationship?

Unknown Speaker 43:46
Yeah. Um

Anne 43:51
Well, I there's there's no greater trial that I think a marriage can go through.

And that said,

you know, my husband has been amazingly supportive. He is the rock is has always been the rock of our family. We both it's it's hugely interesting to see how differently we process grief. I am very much always wanting to see pictures and videos and it's too painful for him to see them.

As far as our relationship goes,

you know, it's still I think we we understand each other in a way that

nobody else can.

it you know, we're not we have not been without art of without our trials. But we're, we're still hanging on will

have been married for 20 years this March.

You know, there are days when

I wonder how much longer it's going to be. But

Scott Benner 45:04
I will, the reason I asked is because it was happened to me early on, when, when I became a stay at home dad, and I had this little baby in front of me. And I just I recognized in my wife's eyes that you know, like, I never really thought of it prior to the baby right before the baby. Like, we were these two people who met each other and fell in love. We were like, the most important things to each other. And then as soon as the baby came, I realized that I was a guy she met that was her son, you know what I mean? Like, it's a, you know, I'm saying, and, and you see that, like, if it I always felt like, if I really screwed something up, I don't know, how she would, you know, forgive me now your thing was an accident, obviously. But it still takes a large amount of intellectual maturity, to remember that, I would think that that's, that's just how it occurs. To me, I think it's very, it's very cool. And, and, and it makes me feel good that you guys are together and that you're working and that you're realizing that like this whole thing is just a you know, it's another process and and you can't rush through it just like you can't rush through grief or, you know, you can't, you know, not to be ham fisted about it. But there are people who sometimes I get notes from all the time, they're like, I just started listening the podcast last week. And my blood sugar's aren't exactly where I want them. Yeah. And I was like, yeah, we've only been at it for a week, you know, like, it's gonna take more time. Like you have to live in it to see where it goes. I would think that that would be, you know, worth doing.

Unknown Speaker 46:44
I guess.

Anne 46:45
Yeah, yeah. We've found people ask us that a lot, actually. Because, you know, they. I, I don't know what, we know how many marriages survive after a tragedy like this. I don't know what the statistics are. But you know, they, you know, people will ask, say, Hey, you know, they don't have much of a chance now. Thanks. Yeah.

Scott Benner 47:07
Hey, listen, some of them do. Right? You could be those people. I, we all live like that. Like, you know, it's so funny. When isn't it great when you watch people get married, and they're all just like, so happy. And they're young. And I'm like, one into one into one. Every two marriages ends in divorce? Like, yeah, you know, and so. And that's from stuff like, he wants to watch Netflix, and I want to go dancing. Yeah. Oh, that's a lesser a lesser conversation. But but it would be it would be, it'd be silly to ignore it. And this conversation, like you're not unaware of your life. And, you know, I'm not unaware of being married. So I was, I was interested to know, and I wish you a ton of success. I hope it I hope it goes the right way. You know what I mean? Yeah, of course. So your note, which, with your permission, after you're not with me anymore, after you're off the recording, I'm gonna, if it's okay with you, I'm going to read your letter. Is that all right?

Unknown Speaker 48:07
Sure.

Scott Benner 48:08
But I can't do it while you're here. Just so you know, and I don't think you'd want me to and I just, it's not it'll be less ugly if I do it while you're not on the recording. So. But I wanted to get your I wanted to get your, your Okay, before I did that. So a number of months ago, when this letter came, some people might remember that I sort of very cryptically mentioned that we should try to do hard things. And that came from your letter. So I'd like you to tell me about that a little bit.

Anne 48:40
Yeah. So Adam was in sixth grade when the accident happened. And he had an amazing math teacher that year. Their class in November, December, he had been studying, I guess, learning how to plot x and y coordinates. And the teacher had given them I think it was intended to be kind of a fun, light hearted assignment. It was in the month of December, he asked them to plot a cartoon character

on a graph

with the information that they had learned from this assignment, or from the from the lesson. So Adam, there were a number of choices and that students had to go to the teacher and then get the information to plot based on the cartoon character that they wanted. So Adam, was he wanted Mario, he wanted to plot Mario and the teacher initially was reluctant to get into that he I don't think he thought that Adam couldn't do it, but he wanted it to be kind of something fun and quick, and you know, that wasn't going to be very time consuming. This one involved like quarter points or half points on the grid. So it wasn't just it wasn't as easy straightforward

character. So

Adam asked the teacher initially said no, he asked again, the teacher said no, he asked a third time. And the teacher was like, wow, Adam. Okay, here, do Mario. So Adam did Mario. A few months after the accident, the teacher had been reflecting on that interaction what had happened. And he put together they framed Adam's drawing, or the the final product that Adam had done the Mario, they framed that they framed the instructions that were very, very detailed, much more detailed compared to the other cartoon characters at the other students had done. And they had everybody sign it.

They presented

an amazing

while we it's now hanging on our front and center in our living room wall. It basically says do hard things. That's the the lesson is the teacher reflected on all of this that, you know, he saw Adam didn't just settle for a super easy cartoon character. He wanted the hard one, he did the hard one. And he did it well. And the teacher knew, of course of Adams challenges extra challenges with Type One Diabetes. What that presented and, you know, he, when he presented this to Arturo, and Andy and I, he basically said, you know, we're learning from Adams is going to be his legacy for our class. He didn't shy away from doing hard things, either with his diabetes and or with this Mario drawing, he knew what he wanted. He was determined. And the teacher just said, you know, remember that as you go through your high school years, as you go through life,

don't back away from doing what's hard.

Scott Benner 52:07
It's rewarding, I'm looking at it while you're talking. And the message is rewarding. And I mean, I to take it a little farther. I feel like you have to have to know somewhere in the back of your mind that, you know, none of your time is guaranteed. Like we all sit around talking about, like, oh, I'll make it till I'm 80. Or, you know, like Baba, Baba, you know, that everyone has that feeling. But the truth is that not everyone does. And you're not going to know who you are in that scenario ever. Right? So whether it's, you know, atoms years that he got, even at the end, where it maybe was just a few months of him feeling better, because his blood sugar's were, we're better off, right? Like, maybe that was, that was lovely, you know, it and it would have been terrific if that went on for 100 years. But it was terrific that it went on for as long as it did. And, you know, with all of us, either living as the parents of children with type one, or, or people living with type one themselves, I think you have to want for yourself, for however many days between one and a and a bazillion that you get, you know, you should want better for yourself. And it's not going to be easy. Right? Like it's it's not going to be easy, you have have an extra challenge every day. And yeah, some days, they're a lot worse than others. But I mean, I mean, unless you're not paying attention and pulled you already one foot in front of the other one, right? Like you just every day is not great every day is not what you want it to be. Doesn't make it not incredibly valuable, doesn't make it not beautiful, or worth doing or worth living or sharing with someone else, even if it's for your memories, or for what you might accomplish today, but you have to honor people like Adam, they don't have the chance anymore, right? So do it for them.

Unknown Speaker 53:59
Yeah,

Scott Benner 54:00
that's just how it occurs. To me, it's how it occurred to me when I read your note and I didn't know what you were gonna say like, I didn't know what I was gonna be able to say to you. I got incredibly nervous about 15 minutes before we were supposed to start talking. And I mean you I don't I haven't been nervous doing this podcast once. And you know, I just didn't want to I didn't want to I just felt like there's so much here. I wanted to make sure we unpacked it correctly. You know? Because at the end of your note, though, I mean not that all of it isn't absolutely uplifting and soul crushing to read on the on the other side like you don't mean like as I'm sitting and reading it, but when you got to the end, I don't know if you still do this or not. But you still listen to the podcast.

Anne 54:47
I do.

Unknown Speaker 54:49
Alright, right now I'm gonna hold on a second god dammit.

Unknown Speaker 54:54
I just well and you know,

Anne 54:56
it will this you know, this is very interesting and you know When, you know, in the three and a half years that we were working with Adam and helping him to manage his type one diabetes, you know, that I mean, it's it's adaptable it of course hard, it's very, very difficult. You know, and there were a number of sleepless nights, I can recall when I would be sitting down right outside his room, when we got the pump and I was playing with the, the basal rates and trying to figure out, okay, from two to three o'clock, his sugar is going high, or from you know, four to five, it's going low, and trying to trying to make those adjustments in those tweaks to just to make it just perfect. And, you know, it, obviously is hard. It's something you wish that was not a part of your life. But strangely enough, you know, I think after everything, I I grieved the diabetes, I grieved, not having that.

Unknown Speaker 56:00
And

Anne 56:03
I, I, I don't know that we're completely done with it. And I you know, we've I've thought about, you know, maybe fostering a child with with Type One Diabetes. I just, I feel like I have this knowledge I, I have some tools I obviously not perfect.

But I know what to do. And

Scott Benner 56:30
listen, I gotta tell you something. You're killing me. Okay. Aye. Aye. Aye. I'm just gonna for a second, because I don't know one other way to couch the conversation. I'm gonna, I'm gonna make it about me for a second, please. People who think that I do that already. Just shut up. We're doing something here. Okay. Um, I thought maybe the podcasts would help somebody. Right. Like, I thought maybe it could. I was hopeful that it would it started proving itself out that way. It does. Every day. I never thought it was going to help you. With that, you know what I mean? Like, like, it just, I could not have planned for that. It just would have been no way. Do you know, try to imagine, you know, five years ago, me thinking, I'm going to try to take my blog and you know, expand it into a podcast, because, you know, next year, some person's gonna find it, and then their son's gonna pass away, and then she's still gonna find connection to him through a podcast about diabetes. Like, like, there's no, there's no way to imagine that. And so when I was reading your note, that's the part that really, really got me like, I just was like, this is, how are you still listening? And then, when you explained it just now I'm like, Oh, that's how, you know, like, I couldn't I couldn't quite understand it in the note, but I 100% understand it. Well, while you're saying it. Diabetes sucks. But it was the thing you were doing with Adam, right? Like you had this connection to him through this thing that was different than with your other two sons and with anybody else in the world. It's a it's an it's so easy to bemoan it, I guess. And for 1000 good reasons. But you have a different perspective than most of us. And I mean, obviously, we don't wish that perspective on someone else. But it's still a viable perspective. And I've the closest I've ever come to it, I think I wrote about it years ago, was that as much as I hate sneaking into Arden's room and testing her blood sugar when she's asleep, you know, prior to CGM, for sure. I realized one day that I get to hold her hand every day. And I'm watching it get bigger and, and older. And it was a very small experience that most people don't have with their kids. And so I tried to find some sort of I don't know trade off in, you know, from beauty to annoyance, right. And, and I did I think it's one of the things I'm really grateful for I lift her hand up, I know what it feels like and how heavy it is, and, and how it's different from the day before. And you have all those connections to I just couldn't imagine that. It's, it's, it's lovely, actually. Well, no, dammit, hold on, and I'm rolling my nose again. All right, yeah, Muslim, we're up against an hour one of us is gonna have a stroke. So let's, but let's make sure. Let's make sure that um, nothing's left unsaid. There's nothing that you really wanted to say. You know, before before we start saying goodbye Right.

Anne 1:00:02
Yeah, you know, I,

I just my encouragement. I mean, I, I love meeting people who have connections with type one. My biggest encouragement to everybody in the type one community is, you know, keep doing the hard things and be grateful that you still get to do them. You know, like I said, I don't, I don't know that type one. I don't know, the we're completely done with it. And I don't know how we're, you know, in what way we might continue to be involved. But I'm just grateful, extremely grateful for the time that we had, I'm really grateful for what I learned through listening to hours and hours and hours of your podcast and how to help Adam live well. And in his last few months of life, I would give anything to be able to go through and have sleepless nights again, every night. I give anything. But I think, you know, Adam was definitely a, like his teacher pointed out, you know, he had this he left a legacy of doing hard things. And I hold on to that. And I continue to go through as a grieving parent and get up every day and do the hardest thing is going through life without them.

Scott Benner 1:01:41
Oh, is the strongest thing I've ever heard anyone say we can imagine. So I think that. I think that's wonderful. I hope everybody heard that. And it leaves them with a meaningful feeling that they don't escape. And you know, if you want to see, you know, the impact that how diabetes is always around while you're saying this beautiful thing. Arden's texted me. Hey, it's lunchtime. Oh, she's like, and I'm listening to you. And, and she's like, I'm not that hungry. So what should we do? And I was like, I think maybe we should do this and this and she's like, Okay, and then she, and then I asked you to have some juice earlier. And she didn't. And so her blood sugar hasn't gone up the way I wanted it to, but it hasn't gone down. So she's monitoring me in the text messages while you were saying these beautiful things. She says. She says, I never had the juice by the way. I knew I didn't need it. You should listen to me more often.

Unknown Speaker 1:02:51
And I'm going to tell you by the way, she didn't need the juice.

Scott Benner 1:02:55
But she just means is her blood sugar didn't get any lower than it was and so now she's just looking at her. She's just she won't stop like I'm about the texture just go eat Leave me alone.

Unknown Speaker 1:03:08
Oh my goodness. Yes. This remind me quite a bit of my text exchanges with Adam.

Scott Benner 1:03:15
I got one from her this morning. I'm just like, like Arden set this you know, I'm trying to get her to set like a decrease in her bazel and she's just doesn't answer me for 20 minutes then finally I get the what back just what? And, and I was like, if I didn't need to say it to her so badly. I would just say What do you mean? What? Like, I'm always like, just scroll up a little bit. Like, couldn't you just scroll and go Oh, look, he just said it right before I said what? She won't say what she makes me say it again. I think it's my punishment somehow. Oh, I want you to if you see fit, first of all, please accept my my love and admiration and and my good wishes and share them with Arturo. And if you feel like that's appropriate, and don't if you don't, but I just really I can't imagine that you said yes to this. I and I wouldn't want you to know why I asked. It was because I thought maybe it would be helpful for you to just be able to tell other people about Adam, and you're gonna tell a lot of people this way. So it just it just, I thought you'll say I think I even said my email, like please say no, if you don't want to do this, don't feel any pressure to do it in any timeframe. It could be years from now, like whenever you want or don't. And you weren't going to do it at first, but can you tell me as we're kind of saying goodbye? What changed your mind?

Anne 1:04:38
You know, I just thought what a way to honor Adam. And I think you know, any parent who has lost a child will we'll jump at the chance to honor their child's legacy to talk about their memories to hear their names and I you know, I i guess i I came into this phone call not really knowing what was gonna be said, Yeah, how it would go or what could be said, or you know what value that, that I would have. But, you know, I, and I don't know that there has been too much value, but I you know, I guess I keep going back to what I wouldn't give to go through the hard times all over again

of

Scott Benner 1:05:29
I believe there is value in it. And, and I we're gonna find out very quickly because I'm just putting this out, I can't stare at this in my folder. It'll just, I can't I'm not going to so I just I'm gonna it's going out right away so that I can I can sort of, you know, just let it move on to somebody else and see what, you know what they can take from it. I mean, I would, I would bet that that there's a lot of good that comes from you sharing this in, not just for you, and any cathartic feeling you might have experienced over the hour. But um, but for people who are going to hear it, I just I think the message is there like, right, like, What wouldn't you do to, to have those experiences still, even though five minutes earlier, they weren't the best experiences of your life. You describe the day he was diagnosis, the worst day of your life, right up until, you know, something else proved out to be more impactful on you. So yeah, that's really something else. Okay. And you're good. You want to tell a story, or I'm not trying to make you want to make sure you're good, right? How Yes, yeah. All right. Excellent. Um, I genuinely appreciate you doing this. Thank you very, very much,

Unknown Speaker 1:06:44
Stuart. Thanks, Scott. No, thank you.

Scott Benner 1:06:48
Okay, I just hung up with and I want to thank him for coming on the podcast and sharing her story. And of course, her memories of Adam and Alec and how her family has been impacted by it's hard to know what to say right? tragedy feels small, like not even like that's not enough. All right, ready? I'm going to going to read you the email that brought you this episode. All right, hold on. It's dated August 9 2019. It says hi, Scott. This is just the thank you email from a deeply grateful mom. No response is needed or expected. I started listening to your podcast in early 2016. My youngest son Adam was diagnosed with Type One Diabetes in 2013 at the age of eight. On the first day of Christmas break, in December of 2016. We had an endo appointment 30 miles away from my home. My middle son Alec 13 years old, had asked the night before to come with us and route the atoms into appointment that morning. Our color, our car lost control on an icy highway and neither of the boys made it. I miss them every single day. And I would give anything to be able to go back to sleepless nights Dexcom alarms, pod insertions, playing with temp basals toting juice boxes everywhere. And being a student of how to make the arrows stay straight. Listening to so many hours of your thoughts on type one management gave me a new surge of energy and hope for successfully managing type one with Adam. As I know you hear from so many. Putting your strategies into practice led to a two point drop in is a one see from my pre podcast days to his September into appointment. I remember feeling so excited to have as a one c rechecked again in December, I'm certain it would have been even lower. While we didn't get to do that, I'm so grateful for all I learned by listening to you being bold with insulin, manipulating basals. Finally figuring out that Adam's glucose would skyrocket due to adrenaline surges when he played club soccer and learning to make the right adjustments during those times. Your message fueled me with a new level of intentionally and determined

Unknown Speaker 1:09:20
Excuse me.

Scott Benner 1:09:23
Your message fueled me with a new level of intentionality and determination that helped me help Adam manage in the best possible way during his short time on Earth. Adams sixth grade class recognize that he left them with a legacy to do hard things. In every single podcast you offer hope and inspiration for people to be able to do hard things and to do them well. Thank you from the bottom of my heart for utilizing your gift of conversation to share such valuable and battle tested insights. I still listen because it helps me feel close to Adam

Unknown Speaker 1:10:03
and Adam Smith

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Pandora - Spotify - Amazon Alexa - Google Play/Android - iHeart Radio -  Radio Public 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.

Scott Benner 0:00
Hello, everybody, welcome to Episode 302 of the Juicebox Podcast. Today's show is sponsored by touched by type one. And their mission is to elevate awareness of type one diabetes, raise funds to find a cure and inspire those with diabetes to thrive, you know touched by type one, they've just recently changed their name. They used to be dancing for diabetes, check them out at touched by type one.org. And if you're in the market for a blood glucose meter, I mean a really great blood glucose meter, head over to Contour Next one.com. See, if you're eligible for an absolutely free meter by clicking that button right at the top of the screen. And to get ardens Dexcom g six, you're gonna hear a lot about the Dexcom. And there's a great story at the end of this one. you'll, you'll see, I don't want to like spill the beans. But if you want to get a Dexcom g six continuous glucose monitor, find out more about it. Definitely head over to dexcom.com Ford slash juice box. There are links to all the sponsors right there in the show notes of your podcast player. Or of course, you can find them at Juicebox podcast.com. So much happened in this episode that I don't even know how to bundle it up and like a little descriptive nugget for you. I'm sorry. Just know that Stacy's gonna come on and talk about her daughter's diabetes. At some point, we're going to talk about looping, some algorithm based pumping, we're going to talk about a crazy, almost emergency slash emergency that Stacy's daughter had an epiphany, there's just it's hard to my notes here are just, I don't know how to make sense of them. Here's what I would tell you. I'd listened to the show. If I was you, I would listen to the whole thing straight through. And I think you're gonna enjoy it. Like I said, the story at the end is bananas. I'm gonna call this 1am I gonna call this one Hulk Hogan's dragon. And might for waxing waning and Hulk Hogan's dragon. No. No, it might just be Hulk Hogan's dragon. Now, or, I don't know, it's gonna be a game time decision, when I type it in. Just know this. Nothing you hear that Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. And a little a little tag here, let me say this, this will be one of a couple of episodes coming up in short order, where I start talking about looping a little bit, I want you to remember that this one and the next one for certain, I was nowhere near where I am now with algorithm based pumping. So you're gonna hear me still figuring things out and saying things that are a little seems like I'm confused. And I'm still getting to it, which I was when this happened. And I want you to hear the you know, the build from the last two looping episodes through this one and the next one you're going to hear, I want you to hear the whole thing that how it went for me. Also know that there's another version of the app that we're using now that we weren't using, then there gonna be some sort of issues that you hear me talk through that kind of don't exist to that degree anymore. And spoilers. Even though I'm going to sound completely confused, not so much in this episode is I'm going to sound in the next looping episode that you hear. But it all works out. Things are going really well. I just think there's a ton of value in you hearing the journey, so that you might know what to expect if the time comes when you make the decision to try an algorithm based pump. Alright, that's all I got for you. We don't put the ads up front. You'll hear them pretty soon, and then it's gonna be straight through shot right to the crazy story at the end.

Stacy 4:02
I'm Stacy Dylan, and I'm a mom of three. And I have type one diabetic named Riley, who's 14. And we randomly finally wholeheartedly bumped into the juice box, juice box podcast, and now we're forever believers.

Scott Benner 4:24
Well, that's excellent. How long ago was Riley diagnosed?

Stacy 4:28
So Robbie was diagnosed in 2007. She was just shy of her third birthday. And the day that it became most evident happened to be Valentine's Day. So she was diagnosed on the 15th. But the 14th was a really traumatic part day. So it's 1005 2007

Scott Benner 4:51
seven. Excuse me. I don't know I do that. Sometimes I can. I did the math off of Arden's birthday and I meant to do the math off of artists. diagnosis date. So you are just literally like a year and a few months behind us.

Stacy 5:04
just shy. And it's so funny because when we first started listening, I had to like, figure out how old she was art. And that is, because I hear you say things. And I'm like, Are you sure? Are you sure that's the age she is because I've got a girl that age. And that is not how it's going for us. So, and then it's just been interesting. I know, by the time this goes up, it will be a different time. But the stuff that I've been currently listening to, I'm definitely seeing changes in your day to day with Arden that are where we were before. So it's kind of interesting, the age and the body and how all that stuff works.

Scott Benner 5:42
Yeah, no kidding. There's, um, there's a year in there, where things make a giant shift. So you were it's, that's so interesting. So you're listening behind a little bit like you're finding the podcasts, and you're kind of just catching up. And on top of that, I record fairly far out into the future waffling. Right. So I'm talking about something that's happening. And it may be happened in January, you're not listening to it till June. But and in that short gap of time Arden went from like 13, a little kid to 14, not a little kid, and everything kind of shifts so quickly.

Stacy 6:18
Well, which is what what I'm so excited about. And you know, from the minute that we listened, which we'll probably get into, but we had like a serious major life transformation, which happened with the change of the way we were handling diabetes. And as we were sort of going through that stuff. I like excited to see like, okay, what's going on with them? How are they doing it, because it has been so close to us. And when we had just recently a couple of we were like, on the path on the path, and we had a couple of hiccups. And I was like, Okay, that's it, I need to talk to Scott. And instead of like trying to connect with him offline, I want to do it on the podcast, so that we can potentially help other teams, because I think a lot of the information that you give is great, but how does it work in each individual person's sort of makeup in life, and because our life is, you know, kind of the same equation, it's interesting to see how you might give advice, you know, pretty close to the range of the same kind of kid, you know, girl, tween teen body, changing all that kind of stuff.

Scott Benner 7:27
And of course, they see nothing you hear on the Juicebox Podcast, his advice, but I will discuss with you.

Stacy 7:34
Whatever you want from there. That's one of our funniest things around the house, we are often quoting that, we'll be saying something and then everyone will stop. And we'll say, but of course, this is not advice, please consult your physician.

Scott Benner 7:46
Well, you know what's funny, anyone who's ever spoken to me privately will know that I start the phone call by saying hi, you know, I'm happy to talk to you just please understand that, you know, I'm not an entity, I'm not a company, I'm a person. I'm not a doctor, if I say anything on this phone call, when I'm describing how my daughter's care goes, and you decide to put that into your life, and you or your kid dies, it's not my problem. And don't call me back or disclaimer on the pot.

Stacy 8:16
Well, but the thing is, is that it really is true. And one of the things that has hit me so hard from hearing and listening to other people's stories is that I truly believe the reason that we are in this sort of holding pattern of how they're training people to care for this disease is that they are doctors, and they're not willing to be bold, because they can't. And it really is detrimental to the long term health of someone if you don't really have all the information. So while you're not giving us advice, sharing your story, and giving a vehicle for others to share their story is just sort of monumental in the shift. So thank you for that.

Scott Benner 8:57
I appreciate you saying that. And you're very welcome. I would tell you that stuff happens behind the scenes, you'd be so amazed by like, there are people whose jobs it is to go around and talk to collections of doctors to try to talk them into giving people with diabetes, better advice. And and it does. Listen, I don't know if it does or doesn't, but I definitely you know, you hear me say it all the time. Like I definitely think some of it is fear. I think some of it is they don't want to be on the hook if it goes wrong. And I think some of it is they don't know. Or maybe a mixture of that. Or, you know, one thing for one doctrine one for different one. I definitely

Stacy 9:35
definitely. Yeah, it is a combo. It is a combo because there's no way that's the thing about diabetes. It's not ever one single thing. It's everything.

Scott Benner 9:43
Yeah. I mean, you hear the stories from people who, you know, get threatened, even, like, you know, hey, I you know, I corrected a 300 number. My doctor told me that we're gonna call typhus. I mean, I'm imagine that, you know, I would have been like I'm gonna call typhus on you. What do you think of that? Dancing for diabetes is now touched by type one, check them out at touched by type one.org. To find out why, all you got to do is scroll down a little bit, you'll see Elizabeth forest right there. She's the President and the founder of touched by type one, she's going to explain the whole thing to you.

Stacy 10:20
I can't even I can't even write. Well, you know, as I was driving late, of course, from my house with the barking dog to my office, so I could have a quiet place. I said to my husband. You know, the thing about doing this podcast today, as I remember the first email that we got after diagnosis from someone that we knew from someone but not really, and the words that were in that that email at the time, I said, you know, if I ever have an opportunity, and you know, of course, I pray I never do. But when that is presented to me, I will Forever and always share our story. From that very minute, even though I didn't really know what that meant. Because it is in sharing the stories of what your true life is dealing with type one that is helpful to other people good, bad or indifferent. I

Scott Benner 11:09
think it has to be I listen, I did something the other night that I was scared as I was doing it. And I still thought I don't know how in good conscience, I wouldn't have this conversation with this person, even though I don't know them. And their situation seems incredibly dire and a little scary. I just didn't know how to say no to them. It just seemed it seemed wrong. You know.

Stacy 11:31
I just gonna say and that's the thing is, you know, you you, you think about the people who are not able to make the changes and are just struggling along, which is again, what really pushed me to send the email to say, Okay, now I know what I want to talk about, because I try and share the story with other people. And what I hear back from them, sometimes I'm like, Well, I can see why you might not want to do this right, or I can see where you're at.

Unknown Speaker 11:57
And that's got to be challenging to be stuck.

Scott Benner 12:00
It is. Okay, so let's um, stick about where we want to jump in based on what you are thinking about saying I think we're gonna go with, explain to me what your days were like with diabetes, prior to finding the podcast. Let's jump right in and talk about the Contour. Next One blood glucose meter. This is the meter Arden has been using for a while now is beautiful, tiny, but not too small, you know, you can still hold it, it's got a light. So you can see while you're texting in the dark, it comes with a little guy got a little Bluetooth inside of there, which lets it talk to your phone. Now you can use the meter without the phone. But if you want to download the contour diabetes app, well, then you're going to add a ton of functionality. And it's going to be really simple to use. Because the meter is Bluetooth enabled, you're going to test on the meter, it's going to show up on the app, that's pretty easy. You'll be able to integrate your blood glucose meter with your smartphone app. This is going to help you simplify the management your diabetes, are you picking up what I'm putting down here? You ever go check him out Contour Next one.com. There's links in the show notes. I prefer if you clicked on that. But if you want to type it in the browser, I can't stop you. When you get there, there's going to be a little yellow thing at the top of the screen, I guess you'd call it a button. It says get a free Contour Next One meter, but there's like a little mark next to it, which I think means not everybody's eligible. But I don't know who is and who isn't. It's worth checking out. So let's not forget the Contour. Next One meter super accurate, easy to use. Nice, feels good in your hand. They've got an app that goes with it. And that app is available at the Google Play Store or at the App Store for iPhone. Contour Next one.com check it out. It really is the best meter Arden has ever used. And while we're talking about the best blood glucose meter Arden's ever used, might as well tell you about that greatest continuous glucose monitor on the face of this planet. That's the dexcom g six continuous glucose monitor. This one's easy. dexcom.com forward slash juice box there's links in the show notes. But anyway you get there. Yes, get there. Because when you do, what you're gonna find is that you can have glucose readings right on your smart device again, iPhone or Android. Not only that, but the Dexcom g six CGM is FDA permitted to make diabetes treatment decisions without a conformational fingerstick or calibration right there's like a little thing here says if you have glucose alerts and readings from the G six do not match that so you'll read it when you get there's a whole bunch going on. Okay, customizable alerts and alarms. That means find out when your blood sugar is rising and falling. you'll actually be able to see how fast it's moving and in what direction this is invaluable information to make decisions about your insulin. If you don't think that's true, wait till you hear the story at the end of this episode. Okay, well Dexcom is the only provider of CGM Systems that's indicated for children ages two years or older. And you can share your data with up to 10. followers. Really think about what that means for a second, you as an adult living with type one, or your child, as a younger person can be wearing the Dexcom g six CGM, that information from the Dexcom can go into your smartphone up to the internet world and come back down to 10 people up to 10 people of your choosing. Those are people who love you who can see the direction and speed and level of your blood sugar. I don't know what you're doing still listening, you should already be@dexcom.com forward slash juicebox. But you're probably torn right? You're like Scott said, there's a big story at the end. But I want to get to Dexcom. And I'm gonna grab Contour Next One meters a lot. I know what you're thinking, how do you decide? Let's get back to the show now and cruise right through to the end. uninterrupted.

Stacy 15:59
I was a late adopter to podcast and I the first podcast that I went to look for was a diabetic podcast because I thought well, what is something that I could benefit from in life that is every day every minute, so I looked for one, and I subscribed and then I never listened because I think I didn't know how and whatever. So for the next I guess, year and a half, we were in burnout mode. Riley is an amazing child, she is good grades well behaved. Everything that you could, you know, pray for a child and a type one diabetic child on top of that. But we were tired, you know, almost 11 years. And at that point, the day to day, she was solidly taking care of things with the pump herself. We have Dexcom cheese six, but it was just really mundane. And it was something that I feel like we weren't giving the right kind of energy to we were fighting. Every time there was a change needed to happen. It just it was just getting really I don't know how to say other than crappy just was. And I felt like that negativity was then putting negativity into her soul and spirit that type one already does. And then here I am shoving it in. And I felt like we were lost.

Scott Benner 17:25
Just chasing all the time never

Stacy 17:28
chasing and like, you know, you go we would go to our endo appointments. And we were rockstars like we do we you know, we have the information for them. You know, we're we're actively managing it her a one C was I want to say mostly between 7.5 and seven, eight. There was right when she started puberty we hit I think 8.1 for one appointment. But according to what they were telling us we were rocking it out. I felt like we weren't because of the fighting and the drama. And it just seemed like it could be easier. And but what they were telling us we were doing fine. I would say her average blood sugar was, you know, more felt like 170 was, you know, Alright, we're doing okay, and if we hit a 250 was like no big deal. Where now if we hit a 170 I'm like, what's going on? You know,

Scott Benner 18:26
Pre-Bolus we messed this up so badly. Let's figure it out.

Stacy 18:31
And it's just so funny, because, you know, I was with someone the other day and texting another TNT mom, and I was telling her to correct a 123. And she's like, you're correcting a 123? I'm like, yeah, cuz See that little dot right there. That one is above that one. And in a minute, that's going to be 136. And that was blowing her mind. Good for you.

Scott Benner 18:52
That's excellent. I love that. You guys are all sort of doing your own version of the podcast out in the real world. When you're talking to other people. It's

Stacy 19:00
Oh, and of course I mess it all up. And like for the longest time, I was listening to one of the podcasts and I was like, what are they even talking about? And it was injection. But the MDI, like, I didn't even know what that was. And like, there's so much diabetic stuff that I just, we don't pay attention to it in that way. And I think that's one of the things that the podcast is also brought is that the community of hearing other people's stories has been really what,

Scott Benner 19:29
what's helped us to, it's excellent, actually, you just made me figure something. So I am right now building a running list of definitions that Jenny and I are going to go over on the podcast. I just

Stacy 19:40
love her You guys are such a good

like frickin frac back and forth though. You know, she's able to keep it medical yet easy to understand. And it's just I when I heard those first Come on, I was like, well, this will be interesting and I listened to all of them even if I felt like they weren't like Exactly our, our jam and I've learned so much.

Scott Benner 20:03
I think even the ones that aren't like I tried really hard to say to people, I see this one is MDI, it's about injecting and maybe you don't check. But please listen to it anyway, just because it all builds into a direction. And it's hard to believe in the moment. Probably, it's also hard to believe that I planned anything out.

Stacy 20:22
funny, because they remember what you said, they're like,

Scott Benner 20:26
what are we talking about today? Please, you have no idea. We start talking to each other. I was like, What do you which one do you want to do today, we did them out of order, like whichever ones we felt like wherever we had space and time sometimes. And

Stacy 20:39
that's the authentic pneus of it, too. And what I really tried, when I'm sharing the story now with people is like, just listen to what people are doing, and then see how it fits in your life. And back to that, like, it's it's not advice, you aren't a doctor. But if you can hear what other people doing are doing and see how that might relate. And the small shifts in your realm can have huge results.

Scott Benner 21:02
So important to realize that, it's possible that if I lay out 10 ideas on the podcast, that you may only need six of them, right? Or that one of them may just be counterintuitive to your life or not work for you, it doesn't matter. I'm just telling you that I think if you wrap your head around these ideas, and some of them will help you and help you kind of in big way. So okay, so you're living prior with I think you're living within a one seat before the podcast that I think most people would be pretty thrilled with. Right? Right. And I obviously, it's so much better than what your doctor sees, generally speaking with the people who come into the practice that they don't even look at you and say, hey, maybe you could do a little better than a seven, five, because the person who came in before you had a nine, or a 10, or an 11. And they look at you, and they're like, Oh, this person doesn't, it's almost like being that I'm the kid in your family. And those people who are from bigger families will will get the feeling of this. Like, if you have a few brothers and sisters, and they struggle in school and you don't struggle, your parents ignore you, because they only they only have so much bandwidth to give to the idea of helping children with homework. And they're gonna give it to Billy who can't count the fingers on his hand. Right? Right. Not you who struggling to figure out algebra in seventh grade, you know, so

Stacy 22:20
I feel like there's like something in your chart that needs to ding and be like, okay, they're 10 years in, they're rocking it out. Let's let's put them on the advanced course now. Because quite frankly, I didn't even know there was an advanced course. Right. And so I wouldn't know to ask for it. And the things that we were struggling with, of more, you know, figuring out the tween teen thing and giving her freedom and me also being burnt out in my negativity, those were the things that we were working on, but really hidden inside that was that her blood sugar was high. But we didn't know that because of the charts that they're giving us and what they're, they're telling us.

Scott Benner 23:03
She was good. I'm gonna reference Facebook twice during our conversation today, one and just very vague, you know, generally speaking, I'm not gonna point to focus on something. But I saw a thread the other day where a mother said, I don't care if my kids blood sugar's high, they need to be respectful of me. And then a bunch of people jumped in and started agreeing with her that diabetes wasn't an excuse for poor behavior, which I don't think it is. But it's like no one in the thread understood that your brain becomes altered when your blood sugar is 300. Right? Right, that you're not having reasonable reactions to things, that you're that you're not in control of what you're saying, even though most of you seems completely reasonable, and you there's still, there's still pressures and implications that are coming from that high blood sugar that are changing your reactions to things. It could even be down to like facial text, you know, to when someone says something to you, maybe you let your dis you know, maybe somebody says something to your maybe you say something to your kid when their blood sugar's 300, that they disagree with you about that, mostly, they wouldn't, you know, make a face at you. But now you get the face because they can't hold the face and you get a copy or a sign or you know, you know, the big blown up cheeks or something like that. And now you're like, Hey, don't be disrespectful of me. And your diabetes isn't an excuse and blah, blah, blah, and it's just it's a, it's a bad idea.

Stacy 24:26
It's and then we're 20 minutes in a battle and I'm screaming at the top of my lungs, and you know, she already has it hard enough. And then when that stuff, we're just piling it on higher and deeper,

Scott Benner 24:39
knowing that that anger is probably pushing her blood sugar up and you could you could be getting her blood sugar down during that time, but instead you're just, it really is like for anyone who's married. It really is like when your spouse says something that doesn't matter in the in the bigger picture. And you can just go past it if you want to. But if you just there are times you think Hey, you know what? I'm going to pick a fight right here, right? And you do that. And then like three hours later you think why did I Why did I do that? was stupid you know, but but here we are now we've changed our relationship. we've ignored the real problem. And and we've been a little petulant, honestly, you know, because I'm tired, and you're my kid, and please listen to me, and I can't take this anymore. And, you know, blah, blah, blah. But, but so that my bigger problem was that then people kept coming in and reinforcing it. I don't take that for my kid when their blood sugar's high, like that kept happening. And I thought I wanted so badly to say, Hey, you guys, like, this is not an apples to apples conversation you're having like, this isn't a kid who just stood up in her bedroom and decided to go be in, you know, in a hole in your right ear. That's not what happened. But I stayed out of it. Because talking on Facebook is

Stacy 25:54
the beginning of the end, you're not going anywhere positive

Scott Benner 25:57
out of your mind, if you think you're going to jump into a lake of promise and talk them into not beating your flesh. So I was just like, you know, I'll do it here on the podcast instead.

Stacy 26:06
So I think that that really, though, I mean, is the core of it. For me, for those who I'm trying to share the story with that their teen has been, you know, 254 years. Right? And that personality, or who they are at that 250 has become so strong, that they don't even know that that's not them. And and how do you stick a pin in that and start fresh? I mean, and that probably somewhat leads to how we were able to do it, but like, I just don't even know where to like suggest to them to start on that? I do.

Scott Benner 26:43
Okay, good. basal insulin, right, so that their boluses work better so that they don't have high blood sugar. So that's not who their kid is anymore. But you're so like, you're talking about a 16 year old? Do you go in the night and you go in and you mess with their settings? And you just do it to them? Like, how do you physically do that? I see. So what happens when the kids sort of autonomous has an opinion in their brain that they're 35, and they don't need to listen to you anymore? And they've been 250 forever. So like, they're already there. They're there. They're borderline serial killers. And and now you're gonna go to try to talk them out of stabbing somebody. Right, right. And how do you not get stabbed to me in that conversation?

Stacy 27:30
And that there's two things on that, that make me think of actual, you know, I talked to you in my car when I'm driving along, and or your other podcast, folks? And I'm like, Oh, no, no, no, or Oh, good for you. And it's been like that from the beginning. So my kids make fun of me, because I'm always there, like, Who are you talking to them? I'm talking to Scott, we're working some stuff out here. But I remember there was a woman and her son had been diagnosed 10 months prior. And it was like, I think the second one that I listened to, and I just kept like saying to her, you don't know, I don't know, you don't know, wait until you're 10 years in. And literally something hit me. And I was like, Wait, what? I don't know. Like, it just opened up. And I was like, You know what, I need to listen to her because she's coming at this with a fresh set of eyes.

Scott Benner 28:23
And that was a huge wake up call to me that, you know, why was I getting so upset. And, you know, if someone out there is listening right now that's in the space with a team that's been high, that maybe they can just take a step back from it and look at it from a different direction. It's you can get stuck in a rut. And I'll tell you, it happens to me too in my life. But this podcast allows me to step back, right. Like, I get to have a wider view while I'm speaking to somebody and it's just as cliched as a thing to say. But, you know, if you hold your hand right in front of your face, you can't see as much of it as even hold it three feet away. And, you know, you just sometimes you get so super focused on what's right in front of your nose that you lose sight of the big picture. My kids yelling at me, I'm yelling at her. This is a problem. She doesn't listen, bla bla bla, well, move your hand away two more inches, maybe it's your budget, move it away two more inches, does she have her period? moving away further, she just failed a test at school and you don't know yet. and blah, blah, blah, blah, blah. Like, why is this really happening? Things are so infrequently happening for the reason you think it just it thing? And then how do you do that? How do you make that time in that space? When you're trying to live your life and you have two other kids? And I'm assuming you have a job and a husband who's probably bugging you for sex? That takes a lot to tell him? No. And then you have to like you know, eat and watch television and vacuum the floor and and right.

Stacy 29:46
Yeah, well, and I think too, one of the things that I've learned in my life over the last, you know, five, six years of really trying to just pause and stop and be more mindful and because I'm kind of a nut job is to to learn Listen, and when either something is presented to myself, or the universe or whatever it is, and how I actually came to listen to the podcast was I got a thing from iTunes or however you get podcasts that says, it's been 486 days since you've listened to the Juicebox Podcast, would you like to continue? And I was like, What? Oh, hey, I don't think I ever listened to that podcast. I think it's like a dad and his daughter or something. And so I played it that morning. And it was literally scary to me that I felt like divine intervention had been like, oh, that I was supposed to listen, because we had had, you know, three or four fights over the last couple of days that had gotten pretty hairy. And that was sort of what started it.

Scott Benner 30:53
Well, first of all, I don't think that was Jesus. I think that's an algorithm Apple built so that people do Arden's Bolus for lunch here real quick.

Unknown Speaker 31:01
Okay, perfect.

Scott Benner 31:03
Are you hungry? So Arden did standardized testing this morning, and then ended up and said, I have to run down and get something to eat. I'm so hungry. And they're going to give us a later lunch today. And I was like, Yeah, go ahead and get something so she runs down. Text me. Hey, Dad, all the food was going because they're prepping for lunch. But I was able to get pop tarts. I thought. That's great. And how do we you know, what are we going to do? Because she's obviously ravenous. Right? She's not gonna stare at the Pop Tarts for 15 minutes. So I did my like sideways best to Bolus without Pre-Bolus thing for pop tarts. And we did. Okay, she went from 90 to 180. But she's 180 now and she's getting ready to go to lunch. So I'm gonna have to make like a really aggressive bolus here. To that pop starts

Stacy 31:53
that pop tarts still sticking to you. Yeah, like

Scott Benner 31:58
in an hour and Arden's looping right now. So, you know, her bazel has been, you know, jacked way up, we put in extra carbs, you know, all that stuff. And it's still just holding her like this 180 line. And now I'm asking if she's hungry, and she's not answering.

Unknown Speaker 32:14
I'll try again.

Scott Benner 32:20
She's doing really good. With all this though. I switched her over to try excited about it. Oh, you're out of your mind. She's not excited about anything. She's 14. She thinks everything is stupid, except her like, you know, her friends that are bad dummy text chains, and, you know, whatever. She's watching on Netflix, and that's all she cares about. She's just like, Look, if it's easy, the only thing she has said so far about looping is why are we doing this? We were so good at it the other way? And I said No, I know. But, you know, I'm trying to see if we can't be really good at this. And if we could be really good at this as well. Maybe it's just another option? Or maybe honestly, you know, at the very least it has allowed me to sleep overnight a different way. So, you know,

Stacy 33:08
I mean, I can't even tell you when we we recently got on the tandem. T one or T two sorry. And with the bazel iq, I have had more actual nights of sleep ever. And you don't you don't realize how sleep deprived you still are and I am not a weaker upper. I I've never been a weaker upper. I always say that if I need to wake up whoever the algorithm or Jesus will wake me up. And and it's always worked because the very beginning they told me Oh, you're going to need to set an alarm at 2am and, and see what our blood sugar is. And I'm like, let me tell you people, diabetic or non diabetic. Seriously, if mama got to get up at 2am nobody's living everybody will be dead.

Scott Benner 33:56
So we're gonna have there's not gonna be anybody left. I'm just gonna be wandering the streets mumbling I had to kill them. It's not my dream. And you know, so never

Stacy 34:04
I've never and and it's one of those things when I go to the support groups or meet people and they're like, Oh, this that I was like, I must be the downright selfish mother ever.

Scott Benner 34:15
Did it cause you a problem or what did you do? Just leave the did you leave the blood sugar higher? Or how did you handle it?

Stacy 34:20
Well, I definitely think that you know if she woke up at a, you know, one at 210 we never even thought second time. That was fine, right? She wasn't high. That was medium radio. Well, you didn't think about it that way was like

kind of a beat. He described. Great, okay, I'm a beast. I'm

Scott Benner 34:42
so amazed that that's never by the way a kudos and it's never occurred to me to consider a 200 blood sugar medium, but now I do and forever Well think of it that.

Stacy 34:52
Well, the funny thing is, is that now we probably think of a 110 is medium, right? Like, not bad. Not good. It's fine like That's what else were we probably thought about that like a 210. And so we just I didn't, I really, truly would wake up if there was something I would wake up startled. And I'd be like, I have to go, you know, check in or with Dexcom. I got to look over at my phone and see what's going on. And then, okay, is this like, should I drag myself out of bed and go take care of that? Or she okay till the morning. But I never set an alarm to physically wake myself up. Gotcha. Hold on, I have to grab something to walk away from the microphone for a second.

Scott Benner 35:40
So this is sort of interesting. So I will everything I've done to try to break the pop caught the pop tart log jam is working. She's starting to come down now. So pleased about that. I think that the insulin we put in for lunch is going to work great. But I think what happened was because she's off scheduled today because of this test. Yep. She bought a mouse. She sent me a note that said, we're eating now. And then they probably jammed around in the hallway and center right down while she's walking now. Probably in the hall. It's noisy, and she doesn't recognize that on texting. And to what we're going to talk about going forward. She's okay. Are you hungry? Kind of. gotta be kidding me Bolus. What is that gonna mean? Let's think it's probably half of that. I was gonna tell her at so now I'm gonna say, Oh, God. The 34 Schorsch definitely going to eat that. And that 4050 some of those items go and 60 carbs. Oh, I was like, What are you talking about car you don't carb count. But now you are because of the looping but I didn't. So I I'm, I'm loopy for looping. where most people would go through and count the carbs. I just went through and counted my units and then turn them in to my head. So I looked at it and I thought, Okay. 123456789 and then we're going to myself, this is going to be 10. And then I had to think what do we have the carb ratio set at? It's like eight to one. And so I was like, Alright, 1080. So 80 and then she's like, she's not sure. So I made it 60 that was the plan brain Park, the people, the people, the people who are probably like, Oh my god, you idiot. Stop telling people you're looping.

Stacy 37:38
Yeah, you're giving us a bad rap.

Scott Benner 37:40
But so we'll see what happens here. And I'm just going to tell her, tell me if you eat everything. And that way, we'll do more if we have to. It's just it's this standardized testing just throws the whole day off.

Stacy 37:55
So we were 54 yesterday, and I'm trying to I'm texting 54 going down. And I'm like, What is going on? Looking at the timeframe. And then she finally texted like, sorry, I had to finish the last couple of questions. I was like, these are standardized tests. These are not your test. These are for the school. This is your blood sugar.

Scott Benner 38:19
Like money from the state. Yeah. Wait, I

Stacy 38:22
like you got to be kidding me. You stand up, you walk out you go get a juice box. Oh my god, drive me nuts.

Scott Benner 38:29
Arden does the same thing, though. She's, you know, well, I couldn't go to that. And I was like, Why can I try? So and she's being polite, honestly, more than anything else. And I'm like, yeah, there's me know what I don't care about.

Stacy 38:42
And, and it's hard because you know, that's the kid I want. I do want a kid that is respectful of others and doesn't want to cause a commotion and those kinds of things. And that's one thing we've had to really work with Riley is to be an advocate for herself. So that, you know, she doesn't get into a pickle because she's trying to be conscientious of others taking the test.

Scott Benner 39:03
Hey, so for those of you not looping, I just saw the Bolus pop up on my app that I'm following with which I know most of you are completely jealous about right now.

Stacy 39:10
But now that we were talking about someone's like, well, a story that we can do in a second but we just had a major overdose, accidental bolus and had to be in the ER and you know people ask start asking all these questions. What about this and couldn't you do that? And isn't there something I was like, Look, people back it up. Okay. We are using the best technology and the best practices. It was an accident. But you know, that is one thing that I've said forever. It's like when she puts it in cancer just be a thing and then I don't have to text her I don't have to bug her because I know she bolused I know she corrected I know she ate

Scott Benner 39:51
we always tandem and I know there's probably some features and functionalities I screw you say clarify sometimes or clarity ease Is the DAX app that has nothing to do with this. But what I was gonna say is that if you had on the pod, by the time this is out there, there'll be apps where parents can see when the bolus has happened,

Stacy 40:10
right? Cuz that I think is a huge component of like your relationship with Arden. You tell her what to do. And from what I hear she, you know, she does it. And, you know, the biggest fight that we had right before making the shift was, hey, Riley, do this, hey, Riley do that. And an hour, I would get busy cooking dinner, whatever. And I looked at and she's 310 going straight up. And I'm like, okay, like, really. So I told her, I'm gonna have to treat you like we did when you were eight. I'm not going to do everything. But when I want to do something, and I feel that you are not going to listen to me, I'm coming over to your body, I'm getting your pump. And I'm going to physically push the buttons. And if you don't want me in that space, you have to figure it out.

Scott Benner 40:55
Yeah, I like that idea, by the way. And I'm seeing that with the loop too. Because with PDM, you know, with the PDM for Omni pod, I could pick it up and it was separate from her. Right. But now it's I need your phone. And so if you don't want your phone taken from you for five seconds, you'll have to pay attention to what I'm doing so that later I can just say, Hey, we're gonna do this now. And you can do it and she is picking it up. This morning. This morning, I asked her to do like a little bolus, like a maintenance bolus with it. Which now people are like, wait, I have to maintenance bullets with the DIY, just trust me, but I will have talked about on the podcast by the time you hear this one. But I think that it's fair to say that these algorithms are going to change people's lives immensely. But it's not going to be what I think some people are expecting, which is, hey, this exists now. And I don't have to ever think about my diabetes again, it's not gonna be like that. Right? You know?

Stacy 41:53
And I think that you have to take little bits where you can write like, Okay, great. This is I'll take this, I'll take this. I'll take that.

Scott Benner 42:00
I'll tell you what, it's it's telling me a little bit and this is the second thing I was gonna say taking from from the internet, you know, and maybe maybe throwing shade on somebody without saying it's them or not, and I'm not I'm, you'll get it in a second. I think that it'll lead into what we're talking about. Prior to puberty. parents of children who are managing these incredibly flat Dexcom lines, doing an amazing job of it. I know they think that they understand it better than everyone else. And they listen you do you have a you have obviously an understanding of the timing events on that that a lot of people don't have. But there is an aspect of this game that you're not playing yet. And you don't realize it while 100% 100% for your Game of Thrones fans. You were okay in doing well in the war until that girl got that dragon and then you really didn't have a chance anymore. Okay, so like you know now there's a dragon like before it was you fighting on the ground with other people with swords right now that's what you're doing your kids nine you have a an incredibly flatline you figured out how to bolus like cereal, which I know how to do And trust me, it's exciting when you do it. Right, you know, and all that stuff. But then all of a sudden the cereal comes back. And it's got a World Wrestling Federation wrestler. It's got Hulk Hogan with it now it's the cereal and Hulk Hogan and Hulk Hogan has a dragon. And you're just like, a, I knew how to take care of the cereal. And so these people would have no perspective on that. But I really wish sometimes they would just listen when someone else says, Look, it's gonna get more difficult, because because then they say, Oh, no, it won't. I know what I'm doing. And they do. They're so good at it like

Stacy 43:50
amazing. That's like the parents that you tell to sleep when they're pregnant. Like, sleep all you can now Okay, and then after you're like, why didn't I sleep

Scott Benner 44:00
before? I could have slept that entire nine months away? It would have been a good idea.

Stacy 44:04
Right? And with Riley like she was such a good child. We took her to restaurants and I was like, totally side eyeing other parents like, get your kid to sit in the chair. Why are they kicking my booth like all this, like holdall dogging them out. And then I had my second child who was the kid that like, stands up backwards on the booth and lifts the bands to pay from the you know, cafe feed on the side and you're like, Lord, help me I thought I was a good mother. I had a good child.

Scott Benner 44:36
Just get like, I people when Cole was born. I remember, you know, becoming a stay at home dad in 2000, which was not exactly the norm in society at that point. And, you know, people were, you know, kind of looked at me like, Oh, this guy is gonna mess this up. And when I when I didn't, they were like, wow, you're really good at this. And I was like, I think it's not for me to take complete credit for the kids. Really. Easy to deal with, right? You know, and I've always maintained that, that if I look like a good dad to you, it's also because my kids are fairly reasonable compliant people. And even when they become, you know, when they, when they get on the other side of listening, if you press back, they, they react pretty well to that to, you know, they mean even now in the middle of Arden being a lady, like we had a thing yesterday where she kind of, you know, she kind of pushed back in the wrong time was like, hey, let's do to stop. And she didn't. And so I, you know, I'm one of those people, I think this is a parenting moment, this is the worst part of my job, but I have to stand my ground here and make sure she understands. And it was unpleasant by the time it was over. And then, you know, an hour later, we were making dinner and she was laughing. And that was the end of it.

Stacy 45:52
And I think that's part that's a challenge, when you really are starting to deal with the the teen aspect of it. Because you know, someone when she was in her fours and fives have that, you know, she never really had terrible twos. Well, she had terrible twos, but she was actually diabetic and we didn't know it with all the you know, I got all these willful child, the books and all this stuff and come to find out before little thing was just sick. But when we would do those things, we, you know, would give her the benefit of the doubt for a minute. And that was pre decks calm. So you didn't know, you know whether her blood sugar was high or low. And I hated the sticker just to find out. Right, right. But then, as we, you know, went into the teen years, I would again try to give her the benefit of the doubt. But I also felt that I had to stay strong as a mom, because, you know, you lay the groundwork here. And you know, one day she sat in the naughty spot for 13 minutes, because she was acting like her four year old brother at the time. And I was like, I'm not getting through with you at screaming. So how about you sit in the naughty spot while he sits in the naughty spot. And I'll set your timer for 13 minutes. And it was funny, but it worked too. That was a long time. And I said I have very simple rule. You know, you respect me, you respect others around you. And if I'm telling you to do something, I need you to do it. It's hard when when their blood sugar is off to stick with that. But you know,

Scott Benner 47:19
I think it's possible that everyone with kids just heard you say naughty spot and thought of timeout and every adult of like sexual crime just thought I don't think that's what that lady means.

Stacy 47:31
Well, you know, I would go to the parenting classes, and they would do this thing of timeout and this of like, dude, that's not working for me. And we so yes, we call it the naughty spot. And that is a different a different way I

Scott Benner 47:46
would not have thought of a timeout if you would have said, Hey, sit in the naughty spot. So anyway. Well, we want to get to something like I know we are hitting tangible things as we're going along. But you see, you had like a genuine question. Like you said that, you know, that right? Like Riley when she's not in the mood to kind of like, I don't know what you mean, like when you met, she's not in the mood to listen or to or to care.

Stacy 48:14
For us. We were in that place where she wasn't in the mood. She didn't care, whatever. And we had a bit of a hard change. So I had discovered your podcast about three weeks before Halloween. And can I can you hold on one second? Scott? I needed someone else because it's making the podcast making noise. Yeah, I didn't know. Thank you. Someone just brought me my phone that I had hidden the other room. Sorry,

Scott Benner 48:40
I'm gonna do something nice. Are you in charge there? Is it like your company?

Stacy 48:44
Now I am working at an amazing co working space. I was a member number one. So I have a little bit of clout. But um,

Scott Benner 48:52
so I just thought somebody was like trying to get brownie points for you. And they probably just walked out thinking, Oh, I messed up, but not so good.

Stacy 49:00
So let's see what we're saying. Oh, so we

I started listening to your podcast about three weeks before Halloween. And I was like, super excited because you know, there was all these fresh ideas. And so I kept saying the guy on the podcast Says the guy on the podcast says which I think someone in one of the podcasts even said that. And so we started talking about it around the house is this concept. And I got a lot of eye rolls and my husband was like, What are you talking about? I'm like, well, you're on a need to know basis. Once we figure it out. We'll share it with you. So read along, and we just kind of were floating these ideas. But then sadly, on November 8, my parents were involved in a big wildfire that we had inherited California and the campfire and my my mom, my grandparents and my uncle all lost their houses. And it was you know, a pretty, you know, stick a stake in it traumatic day and the next day, we We went to go get our new pump and get trained on it and get it up and running. Are you getting the helicopter sound all of a sudden? Okay, good. And we also had just gotten the G six in the mail. So it was one of those days where it's like a whole bunch of stuff was happening, we didn't really know what was happening with their houses at the time, and where we get our diabetic care as a couple of towns over on a freeway with traffic. And for some reason, I made an appointment at 930 in the morning. So we're literally no sleep, I hadn't slept the night before we're jamming over there were in stopped traffic. And it was as if we weren't really driving, and we were floating. And we had this conversation where she basically said, You're constantly disappointed in me, and everything I do. And it cut me to the core of like, I am so not disappointed in you. I'm disappointed in the diabetes. And when we do stuff, and it doesn't work. And I'm frustrated, and I'm tired, but never for a second, am I disappointed in you. And it was a it was one of those moments where I feel so blessed and sad that you know, it had to take all of these other, you know, crappy things to put it there. But we were able to have a connection where we made a choice that we were going to take everything that we knew about caring for type one diabetes and throw it out the window, and we were going to arrive to that appointment with a diabetic educator 100% fresh, and we were going to go about it a new way. And I wouldn't want anyone to have to have to go through what we did to have to be in that space. But what I really want to do is like figure out a way for people who are trapped to put a pin in it and start fresh.

Scott Benner 51:52
Because that is what absolutely changed. Everything is just starting fresh of saying, okay, the guy in the podcast has been saying these things, we now have some two new technologies. Let's agree to not be mad at each other. Let's throw away that history of the fighting and whatnot and go from it from here. You just have to communicate honestly, it's such a It sounds so simple. But you know, if you're in any relationship, any personal relationship you're in is about communication, and about underneath understanding how the other person feels like, Look, you were coming at something in a completely earnest way. And still, she found it, like attacking. Totally, and you didn't mean that at all, because because she has a relationship with her diabetes that you can understand.

Stacy 52:41
And I have been told that many times, this is not your disease. And it's something that sometimes I have to be reminded of, because when I started caring for her, I it had to be my disease. She wasn't able to take care of herself. And as she is she you know, she wants the freedom and the flexibility. And that's the thing, you know, that's a little different. You know, like, I always joke with her and be like, well, Arden would do what Scott asked her to do.

Scott Benner 53:08
I don't care. I don't know who Arden is I don't care and you gotta shut up lady. So

Stacy 53:13
yeah, so she's been she's been pretty much handling things on a day to day basis. Since she started in sixth grade, we moved to a new community. And she started Middle School. And I had, you know, we call it Dexter, Dexter was, you know, giving me some data and that kind of things. But for the most part, she started taking care of everything in sixth grade. And when she needs help, she'll ask, but most of the time, she's taking care of it. And then I think what happened was she started really hitting the puberty and things went amiss. And then the eye rolls and the backtalk and all of that got all convoluted together. And the medium to high blood sugars really, you know, started pushing on it.

Scott Benner 54:04
Two weeks after we made the change. She came to me and was had a very serious look on her face. I was like, what what's going on? And she goes, You know what, I just wanted to thank you, because I hadn't realized how sick or unwell I was feeling in the two hundreds. It just seems like that's what it was. And now that I've broken out of that area and and more strongly in the 90s in the lower 100 I realized I didn't feel well there but I didn't know I'll tell her I'm really glad for That's amazing. And it's amazing that she that she had the wherewithal and and and to come to you and tell it to tell you without it being adversarial or like, you know, she very easily could have fought off. You know, that woman was right. I can't let her know that you know, like, right and she didn't feel that way. She just came and I said to Arden very recently that You know, there's just going to be things that affect how you feel sometimes. And isn't it funny, it's such a hard discussion to have. Because I think that I'm gonna sound like a, I don't know what I'm gonna sound like, I'm gonna sound like I was born in the 70s for a second, right? I think that every woman I've ever met who isn't currently premenstrual or having their period understands how horrible it is to have their period to be pre menstrual. I just wouldn't suggest that during those times, that you would suggest to them that they're having a reaction that isn't actually they mean to be happy. So when, when there are quite literally maybe two weeks of the month, where it's not good for your personal health to go up to your daughter and tell her Hey, you may be having a reaction right now that's not, you know, your real reaction, you have to find this sort of perfect moment for us to come up.

Stacy 55:57
Well, I think what we've tried to do in that area is that I think, you know, because my husband, when we first started dating, he started tracking my cycles. So when we went to have kids, he had like, all these data points that I was like, Why do you have this information? Like, ah, I just had to have a little bit of data. He's a lawyer, so he, you know, there's a there's a black and a white. And so he, he's very much like, yes, so you have your ears, your cycle is this long, and you have this and you skipped this month, I was like, I don't even know what you're talking about. But it has been sort of the thing that we try to do now Riley's also very tied to the moon, which I was like, I don't know what this is. But I'd been introduced to some, you know, hippie, dippie, Moon magic stuff and realize that she's very much tied in with that she's a very much drawn into how the moon is waxing and waning, and whatever. And so we've started tracking it. And instead of saying, This is the time that you're either not on your period, or on your period, or period is like taking it more to the moon and having equal, I don't know, wait to on off, whatever. And that because this comes all the time. Well, let's

Scott Benner 57:14
listen. There used to be it used to make my wife so angry. I would sometimes say to her, Hey, like she'd be leaving for work. And I'd say hey, like, did you you know, are you stocked up? And she's like, what am I going to get your period today? And she goes, how do you know? And I said, Well, two days ago, you were really nice to me. That always happens two days before you get your period. I and she's like, That's not true. And I'm like, Okay, oh, it's not true, whatever. And that's fine. We're up. Listen, and to your other point, a buddy of mine is a cop. And he's like, Look, I can't explain it. But on different like moons, people, people lose their minds.

Stacy 57:53
Now, and it's funny, because we'll look stuff up on the internet, she'll be having this day. And she's like, I don't know what I'm gonna do with my life. I don't know where I'm going. I'm like, you're 14 First of all, so let's not sweat it. But she'll just be saying this stuff. And so I used to get all like, hey, whatever the way I've got other stuff to do. And like, check your blood sugar.

Scott Benner 58:14
Blair now mommy's got her own level of crazy she's got to deal with I can't do your

Stacy 58:18
I'm trying to get in some rows and be alone. So now I just go online and see where we are. And so the last time this happened, I went on Instagram, and I pulled up these like, you know, I don't know what they're pretty little pictures with the quotes. There's a name for it. I'm losing my mind right now. And I showed it to her. And I was like, hey, look at this. And it was all the where the moon was. And because it was a blue wolf moon this over something horizon. Literally the words that she'd been saying to me were in this picture on Instagram. And I was like, You're weird kid. But I think you should look into this stuff that I think it would help you to know. Hey, I'm feeling this way because of and, you know, my blood sugar is, you know, one on one. It's not that okay, where's the moon? No, give yourself some clue.

Scott Benner 59:09
I have an artist telling me what she didn't eat. I didn't have the yogurt or the bagel. Alright, I hold on a second. All right. So let's think of what I did here. So by the way, she's 131 nice diagonal down. Okay, the yogurt. I didn't expect her to eat the bagel. I thought she would eat some off so she didn't so she ate cherries, grapes. Cookies. She had 3045 carbs for sure.

Unknown Speaker 59:48
Let's

Scott Benner 59:50
see what happens. Look for texts in an hour. All right. Go, I'm more of a roll your dice with my kids life kind of person. I'm like, Huh, let's see what happens. actually tell the food log, that you had

Unknown Speaker 1:00:12
3050 carbs

Scott Benner 1:00:16
instead of 60. So she's gonna go into where the loop log the food Instead, it was 60 carbs. And she's gonna tell it you know what, it wasn't 60 it was 50. And that was one of the things you were saying that that I think is going to be so helpful to see if you were like, spot on, or you are way off or that that calculation, I think, is what's going to be interesting. First of all, you're delightful. I'm still wrapping my head around most of this, I was given a reading assignment by Katie, she won't come back on the podcast. So I finished reading. But

Stacy 1:00:52
I was listening to that episode. And I was like, is he going to do it if you're not going to do it? That sounds so complicated. I can't imagine I can barely get on Skype to make get on the podcast like,

Scott Benner 1:01:03
I think so this is like future Scott talking about past Scott, which will be interesting, because I'll be if I stay with this looping thing, I'll be six months into it, by the time you hear me say this, but I think we're going to stay with it. And there's limitations to it, that we as people who are you know, bold with insulin don't see, I there's also pluses to it that you know, will help you. If you don't want to switch what I'm learning from it will help you as I start talking about different ways to, you know, be bold without the without the algorithm. But there's just a lot going on. This is a this is a moment where I'm absorbing, absorbing, absorbing, absorbing and trying to make sense of things. And

Stacy 1:01:45
I feel very grateful that you're doing it because I think, you know, like Arden said you guys were rocking it out in a particular rep to and is changed the way they've done things but because technology is changing, because things are doing, you know, different ways. And every company's handling it different. I feel like you would be a great person to check it out. Because you already have a way that you're doing it that has worked. So how can you give them feedback or give us feedback or evaluated in a way that others wouldn't be able to? It's exactly how I feel. In a similar sentence, I have thrown myself in front of a moving train for you.

Because Mike, and the test rat that has to live with your madness while you're becoming the mad scientist people

Scott Benner 1:02:29
look at me now in the house, they go, what should we do here? And I'm like, I don't know, give me a second. And I'm standing there like, you know, rubbing my my temples going. But I'm getting it like it's just it's so I think that the people who loop now that are obviously more technically based people because they were willing to leap into this right when it was like when it was nothing. And even when I talked to some of them, it's interesting. Like, they'll know these, these directions are very simple. I said, there's simple for you. Like, right, like, I'm like, I'm almost like an idiot. Like you have to like it's not simple for me. I tell her I'm reading things. And when I get bored, I skip ahead. That's right, right. Like most people, like this part's boring, I don't care. And they just randomly jump ahead for sentences. Like, I've done that, or you use descriptions of things that I don't use, and I go, I don't know what that means. And I move on. I said, you're a person who would see a word you didn't understand and define it and keep reading. I skip over it and let my brain filled it as best as I can. Because I don't think the way you think, which is why you're a scientific person. And I am not. And I said and I said you can't be mad at me about this. Because somehow the goofy way my brain works is how this whole bold with insulin thing came about and and now you're forced to like, So Katie told me and she made it public by having she wrote a giant blog post about it. There are so many of you if you're listening to this podcast right now, who managed insulin the way I do that she had to write direction for how to leave my method and go to looping.

Stacy 1:04:07
Right? Well, because I think it's the thing is, is that when I had the aha moment, and I literally heard myself saying, Why can't you listen to this woman who's only 10 months in? And why? because at first I often said this guy is crazy. And, and his daughter must be like stellar because she's paying attention. And all the things that I was giving me excuses as why it wouldn't work for us. And when I had that aha moment to go with it. I can't let that go now like this is I have been shown the information I've drank the kool aid, and I could see how that would be then hard to say, Okay, now you're going to throw all that away and you're going to go this direction and you're going to let the technology help you make these decisions. I visited I gave a talk this weekend. And while I was giving it I thought to myself, yeah, I should be doing this. This is

Scott Benner 1:05:00
But I still believe that these algorithms are, how the future is going to come. And I need to hold true to my word that I think that when leaps are made in management, you need to leap along with them. Or you'll end up being the person using regular mph when people found novolog. And I don't want, I don't want my daughter's care to get stuck in the past. Because when we talked about earlier, why don't doctors tell you? Those are doctors who learned diabetes with a meter. Right? You're walking in there with a glucose monitor, and a pump. And they're like, yeah, just count your carbs, put in the insulin, wait three hours and test. And you're thinking, Well, that doesn't make any sense. But that's what they learned and they got stuck there. I'm not going to get stuck. If that ends up not being right for us. Then God bless, whatever. I'll let it go. But I'm going to understand it before I say no to it. Right. And that's a perfect segue to what just happened to us. With our er situation. We say one thing before you Yeah, sorry. Okay. So again, this is going to be months ago now. But if you go back to an interview I did, which will go up next week, but be up for months. By the time you hear this. with Amy from insulin. She gives this she just gets very honest at one point, and tells me that when she started listening to the podcast, she thought I was a lunatic. Just like like you just described, right?

Stacy 1:06:23
Crazy, not quite Luna.

Scott Benner 1:06:25
But, and she said that I made her angry. Mm hmm. And then she told me that she realized after some time, she wasn't mad at me. She was mad at herself. 100%. And I thought, that's so amazing. And it's nice to hear for her that she made the leap. It makes me sad that my wife will never make the same admission, but that's fine. But it was just I don't mean around diabetes. I've been around everything. Yeah, right. Yeah. But but but the point is, is that she had the I think that shows a real core of character. Because I think there are a lot of times that we ignore things that make us examine ourselves. And she did she I mean, at first she had the reaction she had, and then she stepped back and said, You know what? Why Am I mad at this guy? Like for having a better a one c than my I do? Like, why don't I just let it go and figure out why. How did he do that? And I say that all the time. You'll hear me say it in social media. And when I'm talking when you see someone doing better than you. Don't be mad at them. think, wow, that's possible. And let me find out how they did it. There are plenty of people in the world who do a lot of things that I can't do. And I copy them, because they're having more luck than I am. So anyway.

Unknown Speaker 1:07:37
Well, I definitely

Scott Benner 1:07:37
think that that was the thing too is that I was thinking how can you know at 10 months? You You don't you have no idea? How can you know? And that was really me thinking why didn't I listen to this podcast sooner? Why do I have to be 11 years in instead of 10 years in? How did we not know that a seven seven wasn't a rock star a one c? Like how did I not know that? How did they get this far, one of the saddest moments I think I've ever had on the podcast. And I won't give the person's name Exactly. But they figured they found the podcast and it was too late for their health. And I just I I don't even know how I kept talking to them. Because I felt like a failure for not starting the podcast sooner. And I Meanwhile, I didn't know what I knew that I couldn't. And it was completely ridiculous. It's just it's the timing of life. It's something that no one's in control of like, you know, I mean, if I go have a car accident today, it's not like, you know, in hindsight, I can look back and go, if I just would have left the house Five minutes later, that wouldn't happen. But that's not how things work. So

Stacy 1:08:41
right. And I think the thing to have beating yourself up, you know, for me, it was like, Okay, I'm going to have a second with this. And then I'm going to move on. Okay, great. It sucks that we didn't know about it earlier. But uh, well, now we do. We're going to throw everything out. We're going to start fresh, and let's see where we get.

Scott Benner 1:08:56
That's excellent. Okay, so you alluded to and explained a little bit earlier that you guys had a confusion with a bolus that ended up in the ER, so I would love to hear about that. And we aren't in that we are in an hour. So this is probably the last thing we're going to talk about. But go ahead. Okay,

Stacy 1:09:11
perfect. So we were just coming off the high not from blood sugar, but excitedness we, I'm part of the jdrf Bay Area Planning Committee for our 2019 Gala. And we had that on Saturday. And so the girls my other daughter, Bailey and Riley and I were heavily involved in designing the event and you know, world win on Saturday, super excited Sunday. We tried to like keep it mellow, but we were exhausted. So other stuff to do. We roll into Monday standardized testing, schedules, different everything's off. So Riley is exhausted and left her phone at home, which she's has not done and I don't even know how long so she called me from the school office and said, Hey, I forgot my phone at home. But you know, now I've got my Blood Sugar readouts on the pump. So I don't need the phone, I'm okay. But you won't have shares. So you'll have to just trust me that I've got it handled today. And everything in my beings like, Okay, that sounds great. So, and I do totally trust her eye, you know? So I was like, Okay, fine. Let me know if you need anything. And so I went into a meeting and the school number came up again, I was like, Okay, great. Now the middle child is got something going because the diabetic has settled herself. And now the middle child is going to become a problem. And the voice on the phone was not my middle child, it was one of Riley's friends and she said, I'm talking to you, because Riley's freaking out, she accidentally gave herself too much insulin. And so I was like, Okay, my daughter can be a little heady and get a little excited. So I said, Okay, Gabby, thanks for calling. Do you know how much can you ask her how much she gave. And she said, Hold on. And so then it's like a little little bush collection. She gave 20 units instead of 20 carbs,

Scott Benner 1:11:08
Oh, my gosh,

Stacy 1:11:09
the entire time other than the moment we were diagnosed, I have never had a stomach drop to the way that that was. And the meeting that I was in, I literally got off the phone and said, I need to leave, there's been an emergency, I've got to go. And I then got in the car and I took a second. And I said, Okay, we've been owning insulin, we are bold with insulin. We'll figure out how to handle this. Because we are in charge of the insulin right now. I am not going to let the insulin be in charge of us. And it's going to be fine. But it took everything in my being to be like, Okay, I'm not going to panic.

Scott Benner 1:11:47
drive off the Golden Gate Bridge.

Stacy 1:11:50
Exactly. So I'm not going to say I didn't break any traffic laws. I happen to have the meeting about four minutes from her school, which is closer than I would have usually been. I got there and just very, you know, okay, let's handle this. How many juice boxes have you had, at this point? Let's get in the car. Let's start driving. And so we were doing our backwards math of figuring out how much carbs Do we need to now eat or drink to cover it. And I was like, okay, you're gonna have to drink about eight juice boxes, which I had just gone to the supermarket, after I dropped her off at school, picked up juice boxes, took them back and put them in the office and had them in my car. Never would have had eight juice boxes with us, because we just wouldn't have. So that was the universe prepping us for the emergency. And the thing that I was worried that she's going to start to feel sick to her stomach drinking this much. So it's trying to like go through what do we do? How do we do it. And in the end, you know, we ended up turning into the emergency parking lot at a 43 double arrows down, which was the scariest that I've ever, you know, felt in that situation. But I kept just telling myself, we're very close to covering this we're very close, I just need the juice boxes to kick in. The last one is just getting in there, the insulins ahead of it, like running through all of the sort of like things that you're talking about. backwards. backwards. Right. And, and just you know, and the backwards thing, one of the things you'd explained about you know, when Arden's playing sports and you're like, should I give, should I not what should I do, and just thinking about the concept of, I'll give and if we're, if I'm off will drink the juice box, like owning the insulin versus letting it own you. And I just kept trying to repeat that into my head to get us through like the emergency part of it. And then once we were in the emergency room, and finally back with the doctors after I had to jump the line and scare a lady that was trying to get a cast on her leg and she was broken and you know, all this stuff, you're fine move. Yeah. Later, I went out and found her and apologize. And she's like, Well, my foot was already broken. Another 10 minutes wasn't going to do me anything but you were coming in hot. So I figured we could let you do what you needed to do. But once we got in, you know, it was so interesting to talk to the doctors and some of the technology we were showing them they had never seen before. And you know, they were talking about how they were going to talk to another see if they could get our endocrinologist because of course, the hospital that we needed to go to is not in our network, we had to go to a hospital that we were not familiar with, but is in our town. Right? Because I was like, you know what I I know my calculations and 45 minutes of that insulin when it's going to hit if I take the 15 to 24 minutes to get to the other hospital. We could be in a different situation and i'm not i'm not going to risk that. But it was interesting to play with them in the sense of it being a team versus You know, hearing what they said, and I just kept thinking in my head of the different things, you know, and not specifically like, What did they say on the podcast, but it has become so much part of my daily experience and how I train myself and ways of thinking of things. It's like, yes, you are the ER doctor. And yes, you have information. I am also the mother of a type one diabetic, and I've been caring for her for this long. And I know how we're managing things. So we're going to talk this information out and hear each other and come up with a plan. But, you know, sometimes that's hard to because we've just now gone through an emergency situation. And I was like, I don't want to see a 500 blood sugar. I understand that we might have a big spike, but we need to calculate this. And not just shove

this emergency stuff into her.

Scott Benner 1:15:56
Stacy, I'm dying to know what happened. How did it work out? Like, what did you did the juice boxes work? Did she have to get an IV drip? Like, how low did she get?

Stacy 1:16:04
So it went with the last number that we saw was the 43 double arrows down. It took us about 10 minutes to get people to listen to us checked in and into the back. By then. She was no longer and during that whole time of the 10 minutes, it was just ello w double arrows down. So I don't

Scott Benner 1:16:27
know, I have a couple questions. Did you test your finger stick during then? And did you shut her bezel off?

Stacy 1:16:32
So we um, we took off the pump because she's on the satellite or like that thing's gone for a minute. So she has the T slim too. So it it would have shut off automatically because she was headed down based on its algorithm. But when in doubt we unplug because I just don't want anything like us to mess it up at that point. So we had she had tested at school when the incident first happened. And she was spot on with Dexter of what it said that she was. As we were driving we were 9167 43 doublers down. So the hospital tested when we arrived. And what it said 43 double arrows down. They got a 58.

Scott Benner 1:17:22
Nice. So that meant they they the carbs are starting to work. Yeah, in my mind. That's what that means.

Stacy 1:17:28
Exactly. So her blood sugar was up and we weren't getting the at that point. We were the dots were basically flatlined. And I think that's because it was so low. It was like it couldn't give us any information. But it was giving us the dots across. By the time we got in the back. I think the last juice box because what I was also afraid of I didn't want her to throw up because of having so much juice in her stomach. So we were trying to take it slow. That used to stay in there because it would like if it comes out it stops working right? because let me tell you the math is hard enough when you don't throw up but then

Scott Benner 1:18:06
you would have been like, right, that's enough, sweetie, we're heading for the bridge together. Nevermind. Like now that's the math I'm not gonna dig through the vomit. Okay, like, Oh, my God.

Stacy 1:18:14
And then. So once we were back, actually in emergency, we can see the dots starting to trend up. And so through our calculations with the doctor and figuring it out, we were basically one juicebox short. But at that point, she was way too nauseous to get it down. So they went ahead and gave her one push of the dextrose, which was about 25 carbs through an IV through an IV Yep. And they do a tiny bit of sailing with that. But it's mostly just the sugar. And then of course that killed Dexcom it was like what just happened. So it came up with a sensor error, which at first it took us a second to realize what that was. And then when it came back on, she was 78. And it was only an arrow diagonal up, which we were so excited about because, you know, as much as we want her to be safe at the same time I don't she gets she's now so sensitive to a high blood sugar. I just didn't want to shove her into this upper realm. So then she had to eat some hospital tuna for lunch and show that she could eat and keep a meal down.

And then we got to go home.

Scott Benner 1:19:45
So I went I want to say something before I asked my questions. So since then, have you set a limit on her boluses so that they can't go to a certain number without telling her Hey, you're trying to go over your Bolus limit.

Stacy 1:19:58
So interesting. Yeah. Of course, you know, you everyone's like, well, what? How could she do that? It's like, well, we figured out the math when we got the pump. And at first we were going to put it I think 12 units was what we were going to put the high at. And she's like, Yeah, but what about when we go to claim jumper and I eat 140 cars?

Scott Benner 1:20:19
Think would be the time we would get the the the message, and then we would override it? And yeah,

Stacy 1:20:25
yeah, so we have since changed it. But the thing that's interesting is, again, we're still you know, getting used to, we've only been on this pump since November. And in the grand scheme of things, that's still a short period of time of knowing all of the trials and tribulations with the testing with the off schedule, with the being tired from, you know, partying till two o'clock in the morning. All of that stuff is what set up the perfect storm for this to happen. And I just keep looking at it have one of being the example to share with other people. So everyone can now drop their bolusing down. And I think also it was a great wake up call for Riley, just to remember that this is a fragile situation. And, you know, all of her friends have always rallied around her. But you know, they don't really, they're newer friends, because we've only lived in this community three years. And so they've never, you know, really seen an emergency situation, not that we've never had a low situation like this. But they really rallied around her and were supportive and, you know, tried to be good friends. And you know, one of the friends when she started to get really heady and freaking out said, Stop. Tell me what to do. Like, I'm here to help you. So stop getting upset. But I don't know what to do for you.

Scott Benner 1:21:48
Yeah, that's really cool. And even like, because you have an emergency before around these other people doesn't mean I mean, like I can think of times when Arden's in a room and there's girls in the house, and one of them's downstairs, and I look at them and put a juice box there. And I'm like, this has to go to Arden right now. Right? And then they leave they know not to stop, you know, in my classroom and have a discussion about a movie like they know what's going on. These people just didn't know it on. That's this girl stepped in and did the right thing. It's really cool. Yeah.

Stacy 1:22:14
And the thing is, is that, you know, they very much know when because funny, this specific girl, Riley had just been at her house recently, and they'd all been having fun. And the mom was having fun. And everyone was having fun. And I am like pounding away on the phone because I can just see her blood sugar spiking double arrows up and like she's clearly eaten. And by the time I picked her up, I was being that mom that maybe someone might call CPS on. And you know, and then the mom felt bad that it was her fault. So they had just been through a different situation with us. And, you know, really said we want to understand more so that we can be better friends,

Scott Benner 1:22:53
and understand the immediacy of it. Because there's no other like, in a life without diabetes. Most things don't happen in a space where it's like now right now do it right now, like a timing issue. You know what I mean? And, you know, when should we I don't know, soon I'm getting hungry. Like that's how most people talk about it. Or that's what I constantly am telling her when she's with her grandma, they'll be shopping it cold. And you know, I'm watching her blood sugar goes down. And I'm like, okay, Graham is excited because they found shorts that fit in seven colors, and they're trying to decide what to buy them. And Riley doesn't want to be disrespectful and say, Gigi now is when I go to the food court, not in 10 minutes, you know. And that's something that you know, is being an advocate for yourself as a team, when you're taking care of yourself. What you got to do. It's amazing. So okay, so we'll remind everybody that your pumps have safety limits, you can tell it Don't Don't let my bullets go above a certain amount, you can actually do that with your bazel too. Don't let my bazel rates go up too high. It'll tell you if you try to go over that limit, and then you can make a decision about what you want to do. But at least then because if that happened, she would have been like, Oh, I didn't mean 20 years I met 20 carbs, haha. And then that would have been the end of it. Can I ask a question though, about the 20 carbs? Had she given herself the insulin for 20 carbs like she meant to how much insulin would that have been about?

Stacy 1:24:15
Um, so I think her carb ratio is one to six.

Scott Benner 1:24:20
About Yeah, she meant to give herself a little over three units and she did 20

Stacy 1:24:24
Yes. And so on her new touchscreen as you're going in, you punch in carbs are units which was a finger mistake. And then she made the 14 year old mistake of when it says is this what you want to give just blowing through those. And here's again the universe of it. You know, kind of watching over had she not forgot her phone at home. When she checked her blood sugar when she finished snack and was going into her next period. She would have looked at her phone to get her blood sugar, but she couldn't look at her phone because it was at home. So She looked at the screen of the pump to see what her blood sugar was because it's straightaway on the pump screen when you look at it, and then she saw insulin on board. 19.5 was lucky. She saw that. Ah, wait, wait a minute. It's lucky she saw that. Yeah. Because had she not. And the sad thing is, is her school is in like one of those cell deadzones areas.

Scott Benner 1:25:24
So there's often little glitches of different things. So it could have been one of those situations where they also had the Wi Fi on lockdown, because they were doing testing and all that kind of stuff, it was the perfect storm, you have to look, sometimes you just have to look, I tell Arden that sometimes I'm like, Look, you know, I'm not always gonna, you know, I'm not going to be involved with you constantly. And we hear between, you know, 120 and 70. I know what's going on. But, you know, just not doesn't hurt you to just orient orient yourself sometimes about what your blood sugar is just look down, see what it is and go Okay, it's, you know, it's what it is. And I'm done. And that's, it's good, you know, just to give yourself an idea. They're, they're learning. I mean, obviously, she probably took a giant lesson out of this, I think for you. I want to say, and we're getting so far over an hour, but I need to tell you like you handled this so incredibly well.

Stacy 1:26:15
Well, I've been having, you know, a good coach and not advice from you and just really owning it. And not letting it own us. And, you know, through the whole process, I just kept reeling through all the things that my head, what do I know, what do I know?

Scott Benner 1:26:34
I have to tell you that if this podcast in any way helped you get through that I am really, I am very cool. totally dead. Very grateful that that's true. I think that's really amazing. There's no way there's no way that five years ago, I could have said to my wife, hey, I'm gonna start a podcast. Five years from now, it'll stop a girl named Riley from having a seizure at her school. 100% Yeah, it's just so cool.

Stacy 1:26:57
Yeah. And so you know, tell us that the rock star way that we were living our life wasn't that rock star and that there is a way for a type one diabetic to have the same a one C as a non diabetic, that was not I didn't think it was possible. I thought that because you're a diabetic, you'll never be able to have you know, the same numbers, that wasn't something that I ever understood. And not that we have to strive for that in a way that that's all we focus on. But knowing that it's even a possibility and

Scott Benner 1:27:32
and just being able to, you know, take a seven, seven and go to a six, four with very little effort in this in the grand scheme of things, just doing it a different way. And putting the energy and positivity. I love your attitude. I really do. And I'll share something with you here that's I spoke to a an adult with type one, three nights ago. And I'm not going to give any of her details away but has had diabetes her whole life mid 20s parent a one sees off the charts blood sugars in the high three hundreds of most of the time, and distraught when I started speaking to them. And I made tiny adjustments in my mind to her basal insulin, and explained how to Pre-Bolus and the very next day woke up in her blood sugar was in the 80s

Stacy 1:28:25
I mean, because it's a thing,

but the Pre-Bolus and the slight adjustments those are such huge things in the overall scheme that you know she was diagnosed Riley before you you don't Pre-Bolus a two year old, you got to see what they eat, but never did a flag come up for them to tell us. Now the time now you make the

Scott Benner 1:28:47
shift. Did you know what her doctor did when she went to the doctor for help? took her took her pump from her. And that's that's the part that just you know, makes me sad and makes you say okay, well we just have to keep sharing the message sharing the message so that people see that that's the norm right that it's okay to be in control that your endocrinologist isn't the end all be all love them. But you know, it's your life you have to take over just even think of any point during Riley's you know, incident. If you were just throwing your hands up in the air and yelled call 911. And I'll just see what happens. I'll put this in someone else's hands, it would have went terribly

Stacy 1:29:25
well, and I just feel like the whole 911 experience of what that would have done to her just as a kid would have been so much more catastrophic and and, you know, soul shaking for her, and they probably would have stabbed her with some glucagon that would have made her 600 you know, I just I felt like I was the person that needed to shepherd that and take her there and know what we know and use our best practices even though as an emergency situation.

And so good for you.

Scott Benner 1:29:57
I want to I'm gonna say goodbye to you and I'm ask you to hold on for one second because I want to ask you something that's not recorded. So I really appreciate you coming on and sharing this you were incredibly open. And thank you Riley too, for letting you share her story and tell her I'm really proud of her. I think that's amazing.

Stacy 1:30:17
Well, thank you and I hope I do her proud because she was the one who kept saying Have you emailed Scott yet? You need to get on that podcast.

Scott Benner 1:30:24
You definitely did. I'm already wondering how I can move this up in the schedule. huge thank you to Stacey for coming on telling her story sharing Riley's situation with us telling the crazy story of the ER at the end and everything in between really wonderful, open honest episode. Thank you. Thank you. Thank you so much, Stacy. While we're thanking people let's thank dex calm. Let's thank touched by type one and of course, the Contour Next One meter, and how can we best thank them by checking them out@dexcom.com forward slash juicebox touched by type one.org and Contour Next one.com. There of course links in the show notes. There are links at Juicebox podcast.com, where you can type them right into your browser. Please support the show by checking out the sponsors. And if you really loved it, why not leave a wonderful review on Apple podcasts.

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#301 Diabetes Pro Tip: Glucagon and Low BGs

Scott and Jenny Smith, CDE share insights on type 1 diabetes care

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 -  Radio Public or their favorite podcast app.

+ Click for EPISODE TRANSCRIPT

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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
Hello, everybody, welcome to Episode 301 of the Juicebox Podcast. Today in a pro tip episode, Jenny and I will talk about glucagon, emergency Lowe's, just you know, how they manage that kind of a scenario and what happens if you need glucagon and how do you use it? That kind of stuff? It's not a bummer. Don't worry, Jenny and I laughed more during this one than most of them. So we're gonna go over how to use the glucagon what glucagon is, what is it? Do the three different kinds that we could think of that are on the market? Pretty much it's a nuts the bolts glucagon extravaganza talking about low blood sugar somewhere else you're gonna talk about people having seizures, and hearing them laugh at the same time. I mean, who else is putting out diabetes content laughing about a seizure? It's not funny By the way, it's just the situation was funny. You'll see when you get to it Don't get upset. This episode of the podcast is sponsored by the Contour Next One blood glucose meter and the dexcom g six continuous glucose monitor hmm you can go to dexcom.com Ford slash juice box or Contour Next one.com To find out more about the sponsors and what they got going but trust me what they got going is some amazingly accurate blood sugar measuring tools. Arden uses both of these devices daily and they are exceptional dexcom.com forward slash juicebox Contour Next one.com take a look at both of them support the sponsor support the podcast last thing I'm going to be at the Dallas let's see how they build themselves type one nation summit northern Texas This is the greater Dallas in Greater Fort Worth slash Arlington chapter, big chapter. You're gonna be able to see me and I don't know if you know this Kyle Cochran guy's been a Ford he is a four time American Ninja Warrior. Warrior. Warrior I would not pronounce they are any? Well, any Well, I think I'm having a stroke people. This is the last episode of the podcast. Anyway, Kyle Cochran is gonna be there, I'm gonna be there, there's gonna be some other great resources. It's a really wonderful type one nation event, check them out, you can go to Juicebox podcast.com. Scroll to the bottom, click on events and there's a link right there to buy tickets. It's a great event, February 16. It's a Sunday, Please don't make me fly all the way to Dallas, and not see you. Alright, we're gonna get started. Just remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. And always consult a physician before making any changes to your health care plan, or becoming bold with insulin. And now, Jenny Smith, and I do the chit chat about the glucagon.

I liked your idea, a lot of doing a pro tips for glucagon. And I was wondering if we couldn't meld it together with like emergency situation ideas as well. Yeah, you know what I mean? So I just realized that what we'll talk about what we're talking about it? Yeah. I don't know how to start this. Honestly. I can tell you that. We buy glucagon religiously. I always have some, when it expires, we always get more. We've never used it. We've had opportunity to use it twice when Arden was little, and both times opted to try glucose gel instead. which worked. Here's the best place to tell the story, I guess. And I'm sure I've said it here before, so I'll encapsulate it a little bit. But, you know, when Arden was really newly diagnosed, she was probably like two and a half years old. And thinking back now knowing everything that I know, she was probably honeymooning still, right. And I had no one ever spoke those words to me ever. I didn't know that was a thing back then. And we got kind of ahead of ourselves one day and Kelly was getting ready to leave on a business trip. She was gonna go overseas. And it was like, six or seven hours before her car was gonna come to take her to the airport. And she's like, hey, I need another piece of luggage. Like, let's go to the mall, get a little piece of luggage looks like alright. So we get over to the mall, and it's a Sunday. And we're hungry while we're there. So we grab, you know, the worst thing in the world like mall, chocolate, Chinese food, just not just more food, more Chinese food. And I was just like, boom, I can have my carbs and I was like, pull up my insulin and the needle, bang go ahead and eat. I figured this out. And she ate the food. We ate we bought the bag we went home. Arden was super little so she fell asleep in the ride home during the ride home only like 15 minute ride. And I carried her into the house and put her in her crib. My wife's packing and my son's watching the football game and Everyone's living their life. And all of the sudden, it sounded like there was a wild animal trapped in the house. Right? There was like this grunting and grunting and grunting. And you know, it's like anytime like, I'm just like, What is that, and they start moving through the house towards the sound that's coming from Arden's room, and I get into a room and look in the crib, and she is having a seizure, you know, and I was just like, I did not 100% know what to do. So I picked her up, and I went through the house to where Kelly was. And we had just this kind of little area rug. And I said, I'm like, Arden's having a seizure. And so I put her on the floor, and I got out the glucagon. So the the red box, you know, it has the, it hasn't changed it forever. And this is the one Lily cells, right. And so the red box, I pop it open, and there's a needle in there, the needle needs to be put together, the needle has liquid in it, I know the liquid needs to be shot into the powder, that it has to be reconstituted and drawn back out. And I'm going to be 100% honest with you, I was so freaked out that I fumbled with that thing. And I was nowhere near getting it put together before Kelly was rubbing glucose gel into her cheek. Right? And I'm not embarrassed because I look back on that time. And I remember when they gave it to us, the nurse made such a big deal of saying, This is life saving glucagon. But don't worry, you'll never need it. And so when she said that, I was like, well, I'll never need it. No, I never, you know, and so good thing is

Jennifer Smith, CDE 6:44
that you knew where it was in the house, at least it wasn't like, you know, in the bottom of the dog's bed or something right, just giving me credit knew where it was. So he knew where it was.

Scott Benner 6:55
So So literally, during you know, the Kelly put the glucose in her cheek, she started to come out of it. I will tell you 100% of the the experience of watching art and have a seizure will never leave me I have never forgotten any of the details of it. She was blind, like she couldn't see anybody. She couldn't talk. But I don't think that meant that she wasn't aware of what was happening. Because there's a I've shared it on the podcast recently. But there's, um, you know, there's a video of her from a year or so later explaining how it felt to have a seizure. And so you even when you touched her, it scared the crap out of her when you touched her, you know? And and so I just never even figured out how to put it together. I had shown it to nurses, I had shown it to people like everything, but when the time came, I was like, not very helpful. Right? Anyway, glucose gel did work. And then we went to the hospital, we call 911. And we went to the hospital. And then you get to the hospital and then the hospital kind of treats you like, you don't really need to be here. Like, there's that kind of feeling. And then you realize like, Oh, it's over now. Okay, yeah, it's okay. So, later, while we're talking, I'll tell you about the second time our next seizure, people are gonna be like, why am I listen to this podcast when we happen to voice? It was in the beginning. So I guess, let's really start at the very beginning, right, like, what is glucagon? And what does it do when you inject it? I don't know where you are right now. But I'm on Contour Next one.com you gotta cut me a break. There's only so many ways to do these ads. Okay. I want you to know about this meter, I'm not messing around about it. Arden started using the Contour. Next One, like I told you before, like a year or so ago, maybe it's a little less a little more. I don't know, my grasp of time is uh, you know, I'm getting old. I don't really know how long ago it was. Here's what I do know, the damn thing is accurate. It's easy to carry around. The test trips are amazing, you can miss on your first try go back again without ruining the test. So you're not wasting test trips. Again, the accuracy this meter is just wonderful. So frequently matches with Ardennes Dexcom. It's amazing. And you can get a free Contour Next One meter at Contour Next one.com. So why not go see if you're eligible for it, it's only going to take you clicking on it to find out where the next time you find yourself at the end, just tell him Look, I'd like to use a more accurate meter than what I'm using. Now. Let's write me a prescription for this one. Get some test trips and get moving with the Contour. Next One. I'll tell you what the next one is next level. The Contour Next One is a highly accurate, easy to use meter. As unique smartlight feature it instantly shows you if your blood glucose is in target range, and that can help you make dosing decisions. Right like real management decisions. You know what else they have wonderful. The contour diabetes app that seamlessly connects via Bluetooth. Understand that you test with a meter boom it pops up magic, like on Your phone. And then this app is more than I can describe to you right now. But it's free, and you want to check it out. So whether or not you use my link found at Juicebox podcast.com, or in the show notes, or if you ask your doctor to get the meter, or whatever you end up doing, in the end, just make sure you click on Like, I'm just kidding. Just make sure you get the meter. It's really wonderful. It's gonna be a great addition to your diabetes toolkit. I cannot stress enough how much we're enjoying it. What is glucagon? And what does it do when you inject it?

Jennifer Smith, CDE 10:30
It's made by the body to begin with glucagon, right. And so in the human body, it's a piece of the glucose management system that your body has in place without diabetes in the picture, right. So you've got this management system of your body releases insulin, your body also releases glucagon, which enables the body to break down glycogen, which is stored form of glucose, right? And so you get this drip, drip, drip, drip, drip, drip drip of both. And that helps to keep things stable through the course of your life. So you know, in a person without diabetes, you've got blood sugars that might start dipping down your body releases a little bit of the glucagon, which enables the body to break down the glycogen into glucose, and it starts to navigate things back up, but it's a seamless system, right? I mean, nobody walking around on the street right now, right now, even the most highly educated biochemist, whatever is probably thinking, well, I wonder what my body is doing. But

Scott Benner 11:33
just one of those things that happens,

Jennifer Smith, CDE 11:35
it happens like breathing, you don't think about it, it happens. But in diabetes, we, we kind of have, like a faulty system, obviously, right? Our body isn't making insulin anymore. But we still do have this like drip drip drip of glucose into our system, or we wouldn't need bazel insulin, right? Yeah. glucagon, however, is, as you explained, well, it's an emergency, we know it as an emergency, we have to use this if this situation is here, right? A low blood sugar, treat a, you know, a friend, a child, a spouse, whoever it might be. So when we inject glucagon, it stimulates a very large amount of breakdown of the glycogen, the stored form of glucose, so that the glucose can get into the system, thus bringing the blood sugar up,

Scott Benner 12:29
it's stored in your liver, right?

Jennifer Smith, CDE 12:33
glycogen is stored in both liver and muscle cells

Scott Benner 12:36
themselves, okay? So in a functioning person who doesn't have type one diabetes, your body really is bumping and nudging on its own, it's giving you is giving you insulin, and then it's saying, Oh, this person needs a little more glucose. And so I'll release a little here, I'll release that. And that's happening constantly back and forth, back and forth all the time. So So when we're diagnosed with Type One Diabetes, when someone's diagnosed, we always I mean, for me at least, like, in my mind, what happened is Arden's pancreas stopped making insulin, but more happened in that right, but we just don't talk about the rest of it usually, like, you know what I mean, like, right in because you hear people say like, my pancreas is dead, but it's not that does Oh, no, it does way more things than

Jennifer Smith, CDE 13:24
that. Absolutely. Absolutely. It doesn't mean you've got more things in your pancreas than just the beta cells 100%. In fact, the the the glucagon actually is made in the alpha cells of the pancreas. So a completely like different little cell hanging out, you know, Lahti die here I am to do this thing, right. So, overall, our pancreas isn't dead. It's just a piece of it. That's nice.

Scott Benner 13:49
It's not purposeful function. Yeah. And, okay. So it's interesting, right, like, so how often do you think how often do you speak to someone who's needed to use glucagon in an emergency situation?

Jennifer Smith, CDE 14:05
Hmm. In if I had been doing this

one years ago,

likely more.

Mainly, because I think that with the influx of the technology that we have now, we've got alerts to actually tell us when things are dipping, before we would even get to the place of needing

Unknown Speaker 14:33
glucagon.

Jennifer Smith, CDE 14:34
Now, I mean, that doesn't mean that it isn't potentially, you know, necessary. We've got the standpoint of prolonged exercise, you know, where you've had, like, people who do like a whole entire Iron Man triathlon, and that's a huge depletion in your body's glycogen stores, even if you've been fueling along the way as you should be. That's a huge depletion. Your body has tapped into your stored glucose to fuel that long duration movement. So, I mean, if you have exercise like that, potentially, you're going to need something to boost glycogen out of the system to bring a low blood sugar up and or you've got too much insulin there to begin with, for whatever reason the dose was wrong or the dose was wrong along with a long, active active day or whatever the scenario, glucagon will potentially at some point be necessary. I knock on wood, I'm not really superstitious, but that's like my grandmother's thing to do. It's like knock on wood. Whatever works, right, but I mean, in 31, in plus years with diabetes, I've never had to be given glucagon. I haven't. I mean, my husband knows how to use it. My parents knew how to use it. My teachers at school, my girl scout leaders, I mean, everybody that I interacted, they all knew how to use glucagon. I went to sleep overs with the glucagon in my bag, I did. Never had to use it. Thankfully, in the amount of people that I now work with, I would say, it's not, it's not common to have had to use it, at least not. I mean, we may talk about this a little bit later, like different kinds of emergencies settings of use, but there is the benefit of also mini dosing. And some adults, especially the adults that I work with, are much more proactive in in trying to offset something they know is not working right, you know, and so, ability to micro dose a glucagon injection and offset a low that you don't pass out from and nobody needs to help you. You can help yourself, right.

Scott Benner 16:52
It's funny the way you put it, because I'm thinking back now, you know, Arden's very infrequently low, but she has like a crazy low once a year that just comes it appears to come out of nowhere, right? And we think back on one of those, you realize that without the sensing technology, like if she didn't have a dexcom those she would have seizures in those moments. Yeah. Right. Because it's, it's unexpected. First of all, it's not like I've done anything different that day than another day. I'm not standing around all day going, who this is gonna be the day never happens. It never happens. When you're like, something's gonna get squirrely today, right now that day, right? Oh, and so you know, you're it's one two o'clock in the morning, and you get the alarm, and you realize she's falling way faster than you would have any expectation for. So there's something, whatever it is pushing down on her blood sugar, and nothing to resist it in the other direction. And it's just falling and falling and falling. So we get, you know, we get an alarm go in, you give her I mean, for me, I give her juice first, because I find that works very quickly. Like it's it, the way I think of it is like let's get something in there working. While we do the rest, right? Then I look at things like they're like palatable quick. I always look for like a banana in that situation. Because it's not hard to eat a banana. It's sugary, right. And then you know, I'll roll back to another juice if I have to. But you'll see those, those crazy lows go like 70 6050. And they fall really quickly. And before you know it, you're treating it 50. And you would have treated sooner you just there was no time you're treating it 50 you're into the 30s. Now you're testing now you're doing the like, Okay,

Jennifer Smith, CDE 18:30
this number,

Scott Benner 18:31
let me double check this right. So you're, you finally have a second there's some food in. So now you hit a finger stick, and it says something like 30 or 26 or something ridiculous. And you're just like, okay, now I'm here waiting for her to either have a seizure or not. Like that is really what it feels like, like I've put the food in, it's in there, it's going to do something. And you know, and you're just, I don't know about everybody else, but I test and then I wait like, not long, you know, it's like four or five minutes later, you test again, and you're looking for just any sign of stability. Did the 38 stay at 38?

Jennifer Smith, CDE 19:08
Did he come to 40? Did it go to 40? Because

Scott Benner 19:10
if it was 40? I don't think she's gonna have a seizure. Right, like, and so I think everyone needs to know how to handle a moment like that. Yeah, you know what I mean? But I'm now now, you know, having seen that moment, a few times in my life. I see, as you're talking that without the sensing technology, she would have went from 50 to 30. And the, the alarm I would have gotten would have been the grunting and the right to see it would have been the seizure. Right. Right. And then and

Jennifer Smith, CDE 19:38
without. Yeah, and without this technology, I mean, I I think fully even to this point, I I still have symptoms for Lowe's. I do even with the technology that I have that alerts me and whatnot. I still know when I know usually even before my system is going to tell me I can tell where I am. What's your number when

Scott Benner 19:59
you know You're low.

Jennifer Smith, CDE 20:01
My number is usually in the 60s

Scott Benner 20:03
Arden's at 60. She knows Yeah.

Jennifer Smith, CDE 20:06
But you know, years ago when I was first diagnosed, in fact, a good a good case where my parents probably could have used glucagon, but didn't. It was the summer like several months after I was diagnosed, we were camping, had been out playing, you know, rafting in the pool at the beach, doing everything that you would normally do when you're on vacation, you know, and it was the evening and my dad was making popcorn at the fire. And we were all gonna sit around and whatever you do at play games, and it was time for me to check my blood sugar because it was like nighttime, right? It was bedtime almost. I sit down, I check my blood sugar. And my mom was like, that numbers not right. And I looked at the number. And I mean, I was the age that I knew numbers, and I knew where my numbers should technically be. And it was 26. You might either like those old like old meters that took like four minutes to test. You just swipe the blood off, stick it back in the machine, push another button, wait for it to actually give you a value. But yeah, 26 my mom's like, That's not right. She's like, Did you wash your you know, all the things I washed my hands again. And like, I tested again, my was like, How are you feeling? I'm like, I feel like I did like 30 minutes ago. I'm like, totally fine Mom, you know, she has to get it was like 25 it was like literally it hadn't moved. Mm hmm. I was like, like, my mom is the kind of person who's just like, oh my god, like, seriously, you know, and my dad was right there. And he's like, well just give her some juice. And my mom. My mom's like, this number isn't juice. This is like we got to do and he's like, give her the juice. She's talking. She's fine. She's answering questions. You know, I mean, I can remember this very vividly. Give her the juice. I drank the juice. You know, my mom's like, okay, let's check again. You know, like, all the thing is certainly, it started coming up. It was slow. And it's a painful Wait, it really is. But my main my mom was like, there. She was like that glucagon is gonna be here in 15 minutes if this juice that your dad wanted to give you is not working? I mean, and who knows? What was the accuracy of a machine like 30 years ago? You know, I mean, my blood sugar could have been 50. Who knows? But, again, I think you also have to judge those scenarios. Like, okay, she can take something into eat, she's talking, he's talking the person's, you know, with me? Can we actually like do the glucose gel? Can you do glucose tablets? Can? Is it safe to do something to chew? Should we just do some juice? I mean, but glucagon is always there, if you don't know. And you can't tell us the glucagon. It's, it's going to work for you. It's the only thing

Scott Benner 22:39
you have at that point to it, right? Because, you know, just as I describing Arden having a, you know, a bad low, she could still eat and reason and talk and all that stuff, right? And so that's fine. But when she was seizing, you couldn't have she couldn't have drank anything or eaten anything that wasn't happening, she was gone. You know what I mean? So she needed she, you know, perfect world situation, we would have used the glucagon in that scenario for certain. You know, it's just it's, and it's, listen, I have to say this, too. It's frightening. But if you think you're going to live a whole life with type one diabetes, and not get into a situation where you test and see a 26. And I think you're wrong. I think it's going to happen at some point I used to tell. It's funny, because you described how everyone in your life knew how to use glucagon. And I've done the same thing, right? You've explained to a million people that it never comes up. And I think that sort of builds a false narrative in those people's heads like, Oh, this diabetes isn't as bad as these people say, right? Because they showed us this emergency thing. We've never used it. It's a it's not a real concern, because it never happens. I do think that's one thing that happens, but But the other thing is that is that you have this kind of feeling of I don't know, like, like, it's it's never going to happen. But it could, it just really could happen. And and if it does, you can't be freaking out in that moment. because trust me, I freaked out once. And if Kelly wasn't there, I don't know what would have happened too hard, because I was like, not processing. Well. And then since then, you know, the second learn. Yeah, you know, storytime the second time Arden had a seizure. We were Disney. And we had spent the entire time day at a park. And we were coming coming back later and I was hot. We were walking. She was eating we were giving her insulin you know, the way we thought we should we were testing she didn't have a glucose meters long time ago. And we're we're within like visual sight of our hotel walking back through the park. And this popsicle salesman's walking on us. It's like 1030 at night. And I remember looking up and seeing this guy holding these giant popsicles thinking like, what devil sent you in my path. You know what I mean? You know, and so But the kids are like, Can we get those? And we're like, Yeah, of course. And we gave her some insulin for it and gave it to her right? Looking back now, I never would have given her insulin for a popsicle. And that's a scenario of knowing your blood sugar or not knowing your blood sugar. And so we you know, she eats the popsicle, we walk back to the hotel kids are again, exhausted, she goes to sleep. The about an hour later, the grunting sound happens. And I'm like, this time, I'm like, oh, there's no raccoon in the house. Arden's having a seizure. I know what this is. And so it was both comforting and hilarious and scary. All three, excuse me, not both, but all three. I went into the other room, goddaughter, sure enough, she was having a seizure, we went right for the glucose gel, because you're like, Well, we know this works. And take the cap off the glucose gel and go to squeeze some out, it won't come out. And in the panic, I just thought, I don't know what I thought. But just the little silver paper was still over the thing, the freshness seal, they squeezed it way too hard. The freshness seal did not come off. But it sprung a pinhole in the back corner of like the sealed part of the tube. So imagine icing tubing, and I'm squeezing it and I am writing in calligraphy all over the ceiling of the hotel room in this laser thin beam of glucose,

Jennifer Smith, CDE 26:23
right? Oh, no,

Scott Benner 26:25
we all look up, everyone laughs we spin the thing around and shoot the glucose gel under our mouth out of the pinhole and out of the thing rubbing her cheeks, she wakes back up again. She's fine. She's kind of looking at you like Yo, what's up, and we get we get her stable, make sure she's not falling, and we put her back to bed. The whole thing took like 15. And that was sort of the end of it. And she's never had one since then. You know, but we learned a lot in that in that time. Absolutely. So if you don't think that's gonna ever happen, I hope it doesn't happen to you. But to live like it can't happen. That's a mistake. And so back to my original point, when when I used to spend time before when I was younger going into school and saying, look, here's what you really need to understand about diabetes, and I would go over the stuff. But I would always end with I know you feel like we're sitting here today, getting ready for when it happens, because it's something we can prepare for. I'm like, but the secret about the diabetes in an emergency is you sort of can't prepare for it. Like, if you knew it was coming, you'd stop it. And that's always the weird part about this stuff is it always happens just when you would never expect it to happen, like because otherwise you'd be sitting around going, Oh, you know what's going on this afternoon. It's totally a seizure situation. Like no one thinks that way. And so I don't know, I just, I think it's incredibly important to be prepared.

Jennifer Smith, CDE 27:48
It is well and one additional to that, like preparation. Let's say you are prepared. You've done all of your homework, you know, you've got the glucagon, you know how you know to use it, your friends know how to use it or whatever. And I, I bring this in because it's something that I do discuss, especially with like older teens and like college students and anybody who does a lot of socializing within their job. I think it's, it's really important to know that there may be a point at which glucagon may not work. That's right with alcohol. Mm hmm. And I mean, there really is, there's a real reason it's not like the glucagon is like, Oh, I'm just not gonna work today.

Scott Benner 28:32
Like, you know, Jenny trust too much. She doesn't deserve for me to work.

Jennifer Smith, CDE 28:37
Right. Right, right. He she had beer and I would rather she has, like, you know, a Mai Tai or something. No, not at all. It's just, you know, it's the there are biological reasons, right? I mean, your liver again, your liver is like this phenomenal organ in your body. It really is. It's, it's fantastic. And it does a tremendous amount of stuff for you. One of them is and we kind of call it your body's detoxifier. Right? I mean, that's a really like nutshell term for the things it does. But the livers task of ridding the alcohol out of the system, which it sees as a toxin. It's going to do that first. Before it does that's its first thing that is its job, it's going to see a toxin is gonna be like this body doesn't need this, let's get rid of it.

And it takes

a while for your body to process that alcohol. So I think it's like one drink takes about an hour and a half to process out of the body. Okay. So in that time period, your liver isn't going to as he efficiently areas effectively check into what's happening with your blood sugar.

Scott Benner 29:45
Yeah, it's a task I really do. Right? It's not

Jennifer Smith, CDE 29:49
but in that if you give glucagon in that scenario, and now you're asking the liver to do another task, it's not a multitasker.

Scott Benner 30:01
doesn't already so are you? I feel like Jenny's saying that a liver is more like a guy, like you give it a thing to do when it does that thing until that thing's over, and then it moves on to something else. I know, this is a generalization, it's sexist. But, you know, I don't know that it's, I don't know that it's that wrong.

Jennifer Smith, CDE 30:20
Yeah, yeah. And drinking in and of itself can also, you know, do some crazy things just to blood sugar levels in general, right. So if it's got carbs, and if it doesn't have carbs, and it's pure alcohol, etc, you may not have been eating with the alcohol. So I mean, there are a host of other things that could go into a low blood sugar in terms of alcohol consumption. But one of the things, of course, is that the livers not doing that drip drip of glucose, right or glycogen to turn into glucose, etc. So your bazel, then that's dripping in the time period that it was beautifully tested, it should be working great. Your basals managing without the normal

Scott Benner 31:03
bukal. They're very important point.

Jennifer Smith, CDE 31:08
So if it's not doing that, then what happens you get a little blood sugar. Now when you take the glucagon, you're now telling your liver, like I said before, to do something to release this glycogen and to give you some extra glucose to bring the blood sugar up. And there's either a major delay or it doesn't, it doesn't do it. They're really in drinking some emergency, you know, if you're with it enough to know that your blood sugar's dropping, obviously, simple carb, you can do the juice you can do that is if you're with friends, college friends, a spouse, a significant other, whatever, they should know where the glucose gel is something safe. If it's not glucose gel, they should know where the honey is, if they don't know where the honey is, make sure it's cake frosting, something that can be squirted into the cheek can be rubbed in massaged in, it starts to absorb and it can bring the blood sugar up.

Scott Benner 32:00
We don't want to have to swallow it to make this process happen. We want it to absorb through the lining in your mouth back.

Jennifer Smith, CDE 32:07
Correct. Exactly. So that's one I think one in that like emergency time of potential Oh, get the glucagon out.

Scott Benner 32:17
Try some other stuff first. Right? stuff first,

Jennifer Smith, CDE 32:20
obviously even calling you know, emergency services, obviously, you're with somebody you really don't know what to do.

Call 911. Yeah. And it's so

Scott Benner 32:29
it's so interesting, because what you just said about, you know, when the liver stops making, you know, it stops dripping out this glucagon, this glucose, we always talk about, you know, you need your basal insulin setup, I'm always saying, right, it's like timing and amount, it's the right amount of insulin at the right time against carbs or body function. And you know, then we talk about body function being like stress or anxiety or pain, or, you know, all that or your liver and what you're doing, that's a body function that's causing your blood sugar to try to go up. And if all of a sudden, it's not trying to do that anymore. Now you're bezels too much. It's too much, right? It's actually off the topic,

Jennifer Smith, CDE 33:06
right? I mean, it's actually the reason that with alcohol, our standard of education that we say to do is for every alcoholic beverage to take your basal rate, if you're using a pump, that is take your basal insulin down by 40%, and set it to last duration, at least two hours for every drink consumed. If at the end of the night, you've had, you know, four drinks, that's eight hours worth of a decreased bazel.

Unknown Speaker 33:37
So

Scott Benner 33:39
right, so let me so now I have this question as we're having this conversation, and maybe I'm wrong. But this thing that we call glucagon that we inject inject in emergency situations, is it actually glucagon? Or is it something that makes your body produce glucagon? cliffhanger? You got to go check out the dexcom g six continuous glucose monitor. You have to if you don't have one, I can't even understand you. I really don't. At least looking into it. I don't understand. How would you? How would you hear all this stuff every week and not think to yourself, I need to see my blood sugar. I want to know what direction it's moving. And I want to know how fast it's going. I want to see my kids blood sugar while he's at school. I want to know what my daughter's blood sugar is at a sleep over. I want to know before I get low, I want to know before i get i three days ago, and by the way, let me say this first. These are my results and yours may vary. Okay. Three days ago, I started helping a person with a blood sugar that was completely out of whack. I'm talking about over 404 hours a day, that low and then when it sat steady, it was well over 250 it was a mess, right? And I was able to help that person make adjustments to their insulin just by seeing their Dexcom that's it took like two days. If I could do that in two days, imagine what you could do with the Dexcom for a lifetime. Please, really, really think about it. I hear all kinds of excuses from people, I don't want to, I don't want to hear it, beep, I don't want this, I don't want that. It's gonna beep to help you. And once you learn how to use your insulin, it's not going to beat that much. Because you're not going to be jumping out of range all the time, like you are now, that's a real tangible thing that could happen for you. dexcom.com forward slash juice box, the links in your show notes or Juicebox podcast.com, Please, I'm begging you just look into it.

Is it actually glucagon? Or is it something that makes your body produce glucagon?

Jennifer Smith, CDE 35:52
No, it I, I understand that it's glucagon.

Scott Benner 35:55
So glucagon makes your body make more glucagon,

Jennifer Smith, CDE 35:58
glucagon injected makes your liver release glycogen and transition it into glucose. Okay,

Scott Benner 36:05
so is this stuff that we're injecting helping bring up our blood sugar? Or is it just making that function happen?

Jennifer Smith, CDE 36:12
It's making the fun, right? It's the glue gun that you inject is telling your body to release the stored glucose and send it into the system. That's what raises the blood sugar.

Scott Benner 36:23
Gotcha. It seems like such a simple thing. But as we were talking, we're a half an hour into this. And I'm like, maybe I don't understand what's in the vial.

Jennifer Smith, CDE 36:32
Unless somebody else knows something else. I've all the years it is glucagon in the it's in that little vial. And it's not as very stable compound at all. I mean, that's why it's in that

Scott Benner 36:43
like the way it is

Jennifer Smith, CDE 36:44
pill form shift the way it is. That's why it expires so frequently. It's why you have to mix it and use it. I mentioned briefly before even using mini glucagon, a small portion of what you mix up, if you are, you know, alone, and you can use it yourself. That vial that you mix up, then it's only good for 24 hours. Yeah, kept in the refrigerator. So

Scott Benner 37:09
and so you're talking right now about the one that comes in the red box, the one that's made by Lilly. So I guess let's break them down a little bit because now there's suddenly on the market more glucagon it forever and ever it was the you got the red box, right. And so inside of that red box really is a vial like a glass smile. And it's got powder inside of it. Then there's a, a needle with and it's an inter muscular needle, it's not an under this, it's not under the skin, like little insolently looks like a all the way all the way in.

Jennifer Smith, CDE 37:40
And it's a pretty good sized needle. It's a hunk of

Scott Benner 37:42
a needle is what it is. And so you pull out the vial with the powder in it. You take the needle, and you inject the liquid, it's in the needle into the vial, then you kind of spin it together, you know, between your two hands. I know you can't see what I'm doing. But anyway, that Yeah, then it, it constitutes it, it mixes the powder with a liquid, then you have to draw it back into this syringe. And then you're supposed to stick that syringe like into the muscle in your butt, right? Or something like that. Or they

Jennifer Smith, CDE 38:08
usually say right into the body. Yeah, I mean, yeah, that's the easiest way checking

Scott Benner 38:13
that glucagon into the muscle. All right. Now that's one glucagon but since that's happened, another company made a nasal glucagon who made that? Do you remember?

Jennifer Smith, CDE 38:24
Um, gosh, I don't remember the name of the company. It's back semi is the name though of the okay. Nice. Oh, God.

Scott Benner 38:31
No, that's sort of like, you know, everyone, I think assumed it was like an aerosol, but it's more powdery. Right? Have you talked to anybody that's used it yet?

Jennifer Smith, CDE 38:41
I've not talked to anybody who used it. I have it myself. I did get a prescription for it. And part of the reason quite honestly, that I got a prescription for it is well, twofold. It's it's certainly much easier to use from all of the research and all the studies. The there's a significant decrease in accuracy of use, okay, or a significant increase in the accuracy of use with the back semi compared to the mixed injectable.

Scott Benner 39:11
Okay. Let me let me take it personally, I'm looking at it so it's actually also made by Lily. Oh, and it's so it looks like it comes in a thing that looks like you know, sailing you'd see it the tube, alien thing you'd spray in your nose, but I'm reading it here it is a powder, dry powder spray in a portable single use ready to use device now. I've only heard from a couple of people who have tried it and so far the people who've tried it have said to me that it burned their nose. So the inside of their nose I don't they didn't say about how well or not well it worked but Jenny's hearing that it works more that it works better than the this

Jennifer Smith, CDE 39:51
in terms of accuracy. It was from what I know it works the same as dosing but the accuracy if somebody else has to give it to you More accurately delivered. Okay,

Scott Benner 40:02
so in a panic situation, your friend is a little more able to stick something in your nose and squeeze it than it is to everything I just described and then stick it in your butt.

Jennifer Smith, CDE 40:12
Correct. Okay, correct. I mean, I guarantee you that, you know, when Arden was two and a half, if you had had something like this, taking it out of the bottle, sticking your nose and pushing it in, you would have had no trouble doing that, you would have been able to figure it out. And I, you know, a big part of having it in the house is because with little kids, you know, I, my seven year old is a smart kid. And while he would know to call 911, he would know to go to the neighbors if I was a home loan with them, and I wasn't right. This is something that I easily showed him in two minutes. And I was like, this is all you got to do and then run to the neighbors. That's that's all you gotta do.

Scott Benner 40:55
You know, you're gonna sleep soundly one day and wake up with a burning, burning in your nose and their front door wide open. Gonna be like mommy's down, and you'll be like, Nah, he's just sleeping. So now there's a third one on the market. And I just left Arden's appointment the other day, and I got our glucagon change to G Volk. So, g Volk, comes in a syringe still, but it is the I think the kind of the genius of what this company figured out is, is that it's, it's pre constituted, you don't have to mix. It's not a powder and illiquid. And it's incredibly stable. So my assumption, I'm making an assumption that you might, you know, maybe people who used to think, oh, one day, we're gonna make a closed loop system with glucagon in it, but we couldn't, because they couldn't figure out how to keep that glucagon stable long enough. I'm starting to think maybe that that might be the next step after these algorithms, you know, I mean, maybe it will be a dual chamber pump with an algorithm. And this, but I went with this one, and I will be 100% honest, why? There's two things. The nasal thing to me, seemed everything what Jenny just said, like, seems super easy to do, and all that stuff. As soon as I started hearing about the burning, I thought, okay, like, that makes sense. And I still was going to go with it. Until and again, this is being very honest, the makers of GE Vogue said, We'd like to come on the podcast and talk about the glucagon. So sometime in the future, you're gonna hear an interview with the CEO, and he's going to tell you why the company started and all this stuff. And it was super interesting and incredibly interesting life. I it's possible that when you listen to it, I mean, if you listen to this podcast enough, you might not be surprised by this, but I don't know exactly how much we're gonna talk about the glue gun, how much I'm just gonna be like, so what did you do after college? That's weird. And, you know, but but that, so I went with it. For two reasons. One, because it's stable. And you know, I don't have to it doesn't have to be metal. Yeah, the injection isn't intermuscular. It's just, it's just a normal like, little needle. And I thought, maybe I can use it for bumping, like doing glucagon. Like little bumps, too. And then and that wouldn't be possible with the nasal. Right.

Jennifer Smith, CDE 43:19
And there is I mean, there is a guide, certainly for using you're talking about like that mini dosing, kind of of glucagon. And there is a guide for it. In fact, it's, it's actually a guide that starts with, you know, a tiny, tiny amount for little people.

Scott Benner 43:34
And you talked about it on the pro tip about celiac illness. We talked about that, right? Yep. Yep. You people can check that out if they want to hear that, but and so incredibly, ironically, I guess, not long after you and I recorded the the illness pro tips, Episode ardyn got sick for a number of days. And unlike most people who are like, Oh, I got sick and my blood sugar went up, Arden gets second or blood sugar goes down. So there was this one time her blood sugar was you know, it was at 70. And I'm like, it's gonna hold it's gonna hold eat something. And then the food didn't do anything to her. And it kept drifting down. And I gave her more and more. And then there was this moment, you know, we're like, 45 minutes into this since she's now 55. And I'm like, Jesus, none of this food is touching her. And so I'm thinking to myself, what's next? Like, I have to do something right now. I walked up to her with a juice box. She goes like this. puts her hand up and she goes, if it's my time, it's my time. But I'm not drinking another juice. Girl super serious and trying to be funny at the same time. I said, Right on, okay, I hear what you're saying. She's like, seriously, if I drink another juice, I'm gonna throw up and I was like, gotcha. So I went downstairs. This is probably the first of all this is completely off label. But it's also why at the beginning of the episode, I tell you, this isn't I'm just telling you what I did. It's not medical advice. And I took my Old no red kid warm Lily and I mixed it up. I went back and listen to what you and I said to each other. This is me like, I'm like, I wonder what I'll do. You know, there's a podcast episode about this Hold on. Then but and I remembered and I drew up like I kind of spit balled it a little bit. It was off based off of weight, I remember that I drew up seven units. And I gave it to her. And it took a little while, but no lie, her blood sugar went back up, not too far. And it leveled out. It stayed there. And I was like, right on, I am definitely getting the gfo instead of the nasal stuff, because this might happen again. Now, that was my reasoning for going that way.

Jennifer Smith, CDE 45:39
The big question about the Evoque would really be the pen itself, how? How, how much is in the pan? Like how many? You know, what's the dosing because when you look at how much to give, it's, I think it's if you're over 50, in the doses, 15 units of mixed up glucagon. And that would be given kind of like we talked about before, and the other, the other episode, a certain amount of time. And then if it doesn't bring the blood sugar above 80, then you re dose with the double the amount. So just with the G Volk, my question would really be how, how much do you know that you're giving

right as a mini dose? Because

Scott Benner 46:20
I used to find out because you're 100%? Right. And and so I'm going to try it? I'm going to find out. And if it's not right, I'll switch to something else. I you know, yeah.

Jennifer Smith, CDE 46:28
Yeah, I pre mix that you don't have to do any of that extra stuff. That's really awesome.

Scott Benner 46:34
I think that as a replacement for the Lilly one, this one's a no brainer, right? Because you don't have to mix it up. And it's not this giant needle. But I think and this is not something the company said to me, my but my assumption is, the real excitement here is about the possibilities for dual chamber pumping, tested stable. And not only that, I think the bigger excitement and I think the CEO alludes to this, if I'm not mistaken, I'd have to go back and listen. But my assumption is, they figured out the science of making something liquid stable, which now means that science could get applied to other things. Sure. I'm guessing I'm guessing this is the very infancy of this company is what I'm thinking and run by nice people. So that's cool. Oh, okay. So we went over the three different kinds of glucagon. What and the when? Right, you're going to use glucagon when somebody can't physically take something in their mouth anymore? Right, right. When Arden had a seizure, we only use the gel and rub it into her cheeks. We were trying to get her to swallow it. If you try to get somebody having a seizure to smell something, you get them to aspirate. It's bad. Right? Right. Right. Right.

Jennifer Smith, CDE 47:49
They may be even a you know, something for, as we know, symptoms of low blood sugar, even if you're not passed out or having a seizure, you could be not together with it, right? I mean, many people complain about their spouse, significant other child child getting very violent, or very abusive, or whatnot. I mean, getting them to eat something is impossible, maybe impossible. So using glucagon, in a scenario, like that may be your only option.

Scott Benner 48:19
Yeah, you might be tackling a,

Jennifer Smith, CDE 48:21
you may be tackling that and holding them down.

Scott Benner 48:25
I'll tackle them that hand me the needle, it's gonna be a lot of fun.

Jennifer Smith, CDE 48:28
Right? Right. So

Scott Benner 48:30
well, that really is, you know, I've heard the stories too. And there's been people who've come on here and told them, but I've heard them privately two of the worst scenario ends up being when you're two adults, and one of us physically smaller than the other one. And the larger person, you know, becomes combative or angry. And I've heard I've heard about people throwing furniture and, you know, saying terrible things. And, you know, yeah, and everything in between. So

Jennifer Smith, CDE 48:58
and from a safety standpoint, you know, if the person is up and moving and in, let's call it like a violent sort of behavior, and you're not safe, just call 911. I mean, that's really, I mean, don't try to get close to them with a needle in China

Scott Benner 49:16
is not a good idea. It's such a bad television show, like you're just standing across from each other one guy's ranting and raving and holding a lamp and you've got a needle in your hand. Every bad movie I've ever seen in your life. Exactly. I think the goal would be not to get that low if you absolutely can. But like we said, these are emergencies. They don't happen on purpose. I think it's just very important to remember, like, you can't plan for an emergency. I mean, you can plan for what to do when it gets here, but you can't plan for when it's going to happen. Right? Right. So let's talk about since we're in this vein right now, and we're using a part time and we have a couple more minutes. Let's talk first about low symptoms. Some of the things you've heard people saying I will start with the one that Arden tells me What is happening? Why or why am I being treated buddy wants to reach you? Oh, you know what actually this is funny. It's um, Express Scripts I have to say okay to prescription glucagon prescription. I'll call them too funny to call them back in a little bit. But I know that's what that is. Now my wife has picked it up downstairs and she's busy listening to a recording. And she's trying to figure out why she's listening to a problem. So are we the other day? She She got a little low, right? And we were going right into our restaurant. So she went like quickly from like, 75 to 60. And I was like, hey, you're dropping, and she's like, Yeah, I know. And I was like, How do you know? And she said, My lips are numb. Mm hmm. And I was like, really? She goes, Yeah, she's like, that's the one that I like, that's my physical tell. She's like, my lips get numb. And she goes, and if you don't take care of it, she's like, I didn't realize before. So she told me a story. She said one time she was out with my wife. And this happened. And my wife gave her a drink to have. And she drank it and orange like, Oh, this tastes terrible. And my wife's like, really? And my wife tried it and said, Kelly's like, no, it seems fine. And Arden kept drinking a little while later, I think we were at a baseball game for my son and I was on the other side of the field. So I came back over eventually. And my wife said, Hey, Arden was low earlier, but we took care of it. She drank this. She said it tasted weird. And so I tasted it. I was like, I'm zone tastes fine, you know. And so it took Arden she said, it took her years to figure out that when that numbness comes, it's affecting, like her tongue in her mouth, too. She feels it on her lips. But she's like everything. Everything tastes weird. At that moment, I was like, Oh, no kidding. So I was wondering if that happened, anybody but what are some of the of like, what happens to you?

Jennifer Smith, CDE 51:51
So and I think that's, it's good to acknowledge symptoms and understand that there are many symptoms because they can also change over the years. Like I, you know, when I was younger, my symptoms were the classic like, I would get, like, visibly shaky, I could hold my hand out and I was like, visibly shaky, beyond just the internal symptom. It was there was a visible cue there too. In college, I also had something very similar to what Arden is describing. But it was more It was more like an internal mouth numbness. It wasn't really my my lips, it was more like an internal mouth like it almost like you know what it feels like to be numbed at the dentist. Like you feel like your whole mouth is thick, and like pudgy. That's what it felt like to me. Okay. Um,

Scott Benner 52:44
hello, now is there for you ate, like, after you brought your blood sugar back did it last?

Jennifer Smith, CDE 52:50
Ah, gosh, I mean, I would say it probably lasted a bit of time after my blood sugar was actually normal. Because I specifically remember it. Like in college, I was still on injection. And so I would often have that as I came into lunch, because they had pretty full mornings of like zooming around on campus and getting back and forth, the classes and whatnot. And so I would often have that at lunchtime. And I can say that, before I headed out into my next course of classes in the afternoon, I still had that feeling even though my blood sugar was already back off from having eaten. So I guess for a bit of time, it seemed to last. Whereas my symptoms now don't last after I've treated, they don't last long, unless it is, unless it's been a significant drop. That's happened very, very quickly. And it takes a while for the carbs to kind of start to make me feel better. My symptoms now are much more like this, like, feeling of everything rapidly moving. Like I feel like the world is spinning and moving. And my thoughts are fast. But I I feel like I'm walking through mud. I feel like I just I can't keep up with the way that my brain is thinking about things.

Scott Benner 54:24
So I wonder if we'll never know, obviously, but I wonder if your thoughts are at regular speed and your body is slowed down? Or if your thoughts are sped up and your body's that regular. I'm so interested in that. There's no way to know but because it's right, like you're one part of you is being fooled about something about something and it feels like it's like you feel like that might be what it is. Maybe it's like that maybe you feel like you're in slow motion. I don't know. Isn't it weird? It feels like if it makes me feel like you're in like a dream right? And you're like, kind of screaming like, you know what's going on, but you can't affect anything. Is it that kind of a feeling or no? Am I wrong?

Jennifer Smith, CDE 55:07
It's somewhat Yeah, the other one is kind of feeling like drunk. Like I get kind of tipsy. And I'm like, I've literally been like drunk maybe three times in my whole entire life feels like and but that's not every time but some of my lows feel. And I'm a I'm a very happy like, drunk person. Like, whenever Everything is fine and happy, I'm not an angry drunk. Ah. So I get kind of tip with a low blood sugar sort of like, Ah ha ha, that's funny when it really isn't funny at all.

Scott Benner 55:47
It's like I'm describing with Arden to like, because she's done that a couple of times. Like, you know, I'll be like, Arden get up you have to do some your blood sugar's low. And she'd be like, I'm just gonna die over here, like, but that's very jovial when she says it, like she's very like jokey about it. Like it's cold and

Unknown Speaker 56:02
funny and totally fine.

Scott Benner 56:04
Just be fine. But you know, yeah, I think it's interesting. So when people have you heard from other people like some of this stuff, because they are, before we go into that, let me ask you this one. When you wake up after you've been low for a while, and you didn't know, why are you so sweaty? Do you know? Why did they did well, though,

Jennifer Smith, CDE 56:23
it's an it's a body response to the low blood sugar. All of the physiologic like mechanisms that make it happen. I can't, too, but I do know, it's very, very common to wake up in a sweat.

Scott Benner 56:38
Yeah, like mad, like, change your clothes after you treat blood sugar, like, yep, take the sheets and wave them around for a while. Yeah.

Jennifer Smith, CDE 56:48
That's exactly right. Even kids. You know, I've heard some parents that comment to that, you know, an older child, obviously, wouldn't be wetting the bed anymore. With a low blood sugar may have mainly because they've not got the conscious, I guess, ability during that time period for their brain to wake them up to actually get up and go to the bathroom. Because they're low, you know, so But I mean, outright symptoms, you know, even blurred vision can be one of those sort of like a tipsy feeling on your feet. The shakiness in the hands, people talking kind of like, kind of like off the rocker sort of like, yeah,

Scott Benner 57:29
they don't make sense. Yeah, we're confused. Yep. And it, I guess it it's funny to like I, I've read, you know, back in the day, like all kinds of blog posts from people where they talk about being low, and everyone describes it like slightly differently, but I think it's situational, too. It's really interesting. There's somebody I keep thinking of having on just to describe below one time because this person's love was, like an amazing story to see if I can figure that out someday. Okay, treating things. Like let's so let's talk about it for like to finish up real quick. My blood sugar's falling, but I don't want to get high again. I'm ahead of it now. Like, you know, I know people know Arden's a juice box person, if you know if, if she's looking for a quick hit, if she's not hungry, juice boxes work for us, we use this very specific juice box. I think it's important to remember that you're not looking to drink so I found the smallest box I can with the most carbs in it, so that she's not having to like I I started helping Arden's friend the other day. Yeah, and you're gonna and she's doing great by the way. Oh, yeah. And but you know, if the first time was like, hey, I need you to drink some juice. She pulled out this juice box and it was huge. And I'm like yeah, you that's here. I sent her a link I was like get these like you're killing yourself you drinking eight ounces of juice to get 15 carbs. Yeah, I only want you to know the juice is medicine. It's not for fun like you don't even so juice boxes work I've talked to people who use jelly beans glucose tablets Skittles like so you're you're looking for something that's a real simple sugar that's getting absorbed in your mouth and then hitting your body quickly when you swallow it like that's it so what sometimes people say milk but I don't think milk is fast right?

Jennifer Smith, CDE 59:16
So that's Yeah, I mean ages ago that was one of the treatment things even on my list when I was little for low blood sugars it was milk right well when you consider like whole milk one there's fat there there's protein there and the body actually have to has to break down the milk sugar in order to get the glucose part out of it. Which is what actually brings your blood sugar up so I I don't ever recommend milk. I really don't I wouldn't. I don't think it's a I don't think it's a good low I mean obviously if you don't have anything else around have added drink your milk, but there are much better simple sugar things to carry along with you. Even dried fruit. And you know when I was little, my mom actually used to give me a little mini mini boxes of raisins. Okay. And then I had, at the end of the school year had these like, dead raisins sitting all over the bottom of my backpack that had to be like, they were disgusting. They were like, you know, full of dirt. And they were gross. But that was what worked. I mean, raisins were easy. They they worked well. They got the glucose tablets when I was little were horrid. They were horrid. I mean, if you think they're bad now, they were like, bad, bad years ago. I mean, now, the only ones and I don't even I don't I don't know if they're on backorder still, but the gluco lift brand is the only one that I love. They taste good. They don't come from a GMO glucose source. All the colors and the flavors come from natural fruit and fruit extract. So they're not artificial. You know, nail Lake number 70, or whatever it is. So but something simple. I like your juice box though. I actually have kind of the opposite. I look for the smallest juice box that has the least amount of carbon it because

Scott Benner 1:01:07
when I drink I

Jennifer Smith, CDE 1:01:09
either have I'm either I'm like half awake. If I ever do you have to treat a low overnight, which thankfully, I haven't had to do in a really long time. But I don't want at two o'clock in the morning to have to be completely fully conscious.

Scott Benner 1:01:21
I say to yourself, I really need this juice box,

Jennifer Smith, CDE 1:01:24
right? I mean,

and so the juice boxes I get are actually there. They're four ounces, and they're only eight grams of carbs apiece. Okay. Yeah. So you know, they work Nice,

Scott Benner 1:01:35
nice. I know, Arden also carries those little pouches or fruit snacks with her. And they always have like eight or nine fruit snacks in them, and it will sometimes texture and be like eat for two for snacks. So the other morning, we were heading to school and she was here, throw this out for me. And she gives me a package of open fruit snacks. I still have four in them, but they're hard as a rock, you know? And she's like, they're hard. And I was like, Okay, I'll get rid of them for you. And but yeah, she always has one of those. So in her bag, she has a juice, a small juice box and a small pack of fruit snacks. And she always has that weather. And yeah, and then there's juice boxes sort of spread around the school. So Martin's in high school, so she changes obviously, you know, Ross's Yeah, so there's, you know, in a closet somewhere, there's a couple of juices in each class. And then wherever she is, and she has to take one out and drink it from reverse. If she does, she just hits the closet and replenishes her purse. Yep, you know, I have to say that we don't you know, the beginning of the school year, it's not as it's not as intense when you're older. And you've done it for a while, we just take two bricks of juice boxes and spread them around like, you know, right rose petals at a at a wedding. We're just like, there are some here are some here, throw some there. And you're done. And then maybe once a year are they'll be like, hey, I need more juice boxes. So she might go through. I don't know, she might go through 1020 of them a year at school. But that's pretty much it.

Jennifer Smith, CDE 1:02:56
Yeah, pretty new. That's pretty minimal. That's actually pretty good. You know, when you when you get to be an adult with diabetes and have kids in your house,

you actually have to be

kind of good at hiding thing,

Scott Benner 1:03:09
or disappears.

Jennifer Smith, CDE 1:03:10
Or it or it disappears, like literally, I mean even I mean even my husband don't drink them or eat them. And he I mean, you know, he'll tell me if they're obviously not there anymore. But I mean, my kids if I have my glucose tablets out, they'd love them. So I hide them and so it's like it becomes really important like purses, by purses, I have like these internal like hidden packs, pockets and many of my purses because when they see an open purse on the table or the floor, they're like, oh, does mommy have any of her stuff in here? Like mommy stuff is for really important reason.

Scott Benner 1:03:44
reminded me that during during a family vacation once there was an argument, because we were we were in a moment where it was summertime. And we need help by the way we now because of Disney new hell like magical popsicles were right they give you a little bump, but they didn't make you go too high or anything like that. And for our net lease, and so we bought these box of popsicles like you know, you get to a shore house you go out and go shopping. And someone said Oh, I'm gonna have a popsicle and cozy Hey, you know, I just needed not to touch those. We've got them in case Arden gets slow, which prior to all the technology was going to happen like you were going to use those popsicles. And one of the parents said that's not fair to the other kids. And I remember Kelly going will tell them to get diabetes and then they can have all the popsicles they want to know but like for right now just don't touch the popsicles. But it actually caused it was like a like you know, that's that's not fair. Our Kelly's like, are we talking about fair because my kids are measuring fair. I think I win. Anyway, right. Do you feel like we did a good job here if you needed to? All right, cool. So I will so let me say goodbye let you get back to your business and Jenny's businesses she does this for a living at integrated diabetes.com this is not an ad. This is just me telling you that Jenny is the bomb diggity. Check her out at integrated diabetes.com there's also a link to her email address right there in the show notes look in your player right there. Thank you so much to Dexcom for sponsoring this episode. Don't forget to take a look at the Dexcom g six continuous glucose monitor today by going to dexcom.com Ford slash juice box or clicking on the links in your show notes. Were the ones you'll find at Juicebox podcast.com. And of course, you need to run out and get yourself a Contour Next One blood glucose meter Contour Next one.com

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