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Scott Benner 0:00
Hello friends and welcome to Episode 183 of the Juicebox Podcast. Today's episode is sponsored by Dexcom Omni pod and dancing for diabetes. Today's episode of course is episode number 183. It's with Mandy who is the mom of a little girl who has type one diabetes. This episode is sectional, not like a sofa. But it happens in sections. There's like the beginning section, the middle section and the end each uniquely interesting. Each unto itself. I had trouble much trouble choosing the name for today's episode, I've written down eight option, wrong hospital right diagnosis, don't trade 29 days. The first lie we told ourselves insulin, I need more insulin. Everyone sit down. Let's figure this out. But I couldn't decide what to call.

Unknown Speaker 0:54
I still don't know.

Scott Benner 0:56
I'll surprise myself when I type it into the you know, the type thing? Right? Put the words. Two last things. One, please remember that nothing you hear on the Juicebox Podcast should ever be considered advice, medical or otherwise. And two tickets have just gone on sale for dancing for diabetes. Big Show in Orlando. The shows coming up on November 10. It's at the Bob Carr theater in Orlando. Those of you who know it know it's a beautiful facility can get your tickets now good at dancing the number four diabetes.com

Unknown Speaker 1:35
Hello. Hello, can

Scott Benner 1:38
you hear me? You're so clear. Two days in a row. Everybody's been clear. So exciting.

Mandy 1:45
And I don't have my video on I don't think right?

Scott Benner 1:47
You should know okay, because it just eats up bandwidth. All right. So I tried last week with someone three different times and every connection they had was terrible. Then I got into a panic and the person I did yesterday was so crystal clear like you are like with this exciting. One less thing to think about.

Unknown Speaker 2:09
That's right.

Scott Benner 2:09
Look at your picture. You have like a whole family full of people.

Unknown Speaker 2:12
I do I do. She's the youngest. Kayla's our youngest. She right in front and that image? That's right. Oh, wow.

Scott Benner 2:18
Okay. All right. Um, okay. So Maddie, I think that this is going to be interesting. We are going to be battling a little bit with Arden's taking a quiz right now. And her blood sugar's the tiniest bit low. So I'm going to be doing that at the same time.

Unknown Speaker 2:33
No problem.

Mandy 2:37
I'm Mandy, and my husband is Paul. And we have three girls. And they are 1311, an eight, and our eight year old Kayla is the one that has type one diabetes, and she was diagnosed. She was diagnosed when she was five and a half.

Scott Benner 2:52
You guys started with just like a meter and pens and stuff like that, right?

Mandy 2:57
Yeah, she was in the beginning of kindergarten. And when we went to after that, when we left the hospital, we left with injections, and really no conversation of any other options at that point. So

Scott Benner 3:09
it's interesting is like no one mentioned to you there are these things that pump insulin or like none of that really happened. No, any type one in the family, endocrine issues, anything like that, that makes us less like, oh, how did that happen?

Mandy 3:24
Actually, Kayla joined our family through adoption. And we had some medical history and type one was in that. So we we didn't know that there was a possibility. I was not familiar with the odds of that of as far as whether or not that made her very likely to get it or just somewhat likely. So when she was about three, I actually remember talking to the pediatrician about it and her saying, you know, it's something we definitely need to watch for. And so I think in my head, once we had that conversation, it was like on her plate to remember that we needed to watch for it and I don't you know, and so for me, when signs and symptoms started to appear, it did not. It did not cross my mind until actually the day that she was going to the doctor, because she had been having she'd been wetting her bed at night multiple times. Some nights she would she actually would bed hop. She'd wet her bed, and she decided I'm not sleeping in this. And so she'd go climb into bed with one of her sisters are us and then she'd wet that bed. And it was it was one of those things where she hadn't been out of pull ups for more than probably six months at night. So I just thought, Oh, that's weird. Why is she wetting the bed again? And then, after about a week of changing sheets and doing multiple loads of laundry, I kind of had this moment where I was getting really frustrated with her and thinking like what is going on and then I just had this moment where I went, something's not right. This isn't normal. I should call the doctor and I really thought she must have like a UTI or something like that. Sure. And so I called the doctor and scheduled for her to go in for a year analysis after school. And that day at school, she had an accident at school. And I just thought, This is so weird. And so I was at lunch with a friend that day, and I was just kind of telling her what was going on. And in that conversation, in the back of my mind, I went, I wonder if this is diabetes? And I remember dismissing it and thinking, no way. It's not. And so it can't be that. And then so when we went when my husband took her to the doctor after school, you know, she did her urine test, and they left waiting for, you know, thinking we'll just get the results when we get them. And so the nurse, let them go. And while they were driving home, the doctor called me and said, is Paul home with the girls yet? And I said, No. And she said, I think I needed to turn around. She said, I need him to turn around. And can you call him? And I was like, Yeah, why? And she said, Well, we found glucose in her urine. And I needed to come back. And I just at that moment, I knew, and I was like, okay, and actually, I didn't know, I would say that my thought was like it could be I didn't realize that. The only way that happened, usually was with type one. So we creeped into your head, but it didn't like flip a light switch for now.

Scott Benner 6:24
And now and we're having lunch with your friend Vic, did you verbalize your? Your thought? Or it just kind of popped into your head?

Mandy 6:30
It just went through my head and never came out of my mouth? Yeah, I just thought, Oh, wait a minute. Now that I'm talking about this, I guess, I think that could be diabetes. So so it was actually a comedy of errors from that point. She they called my husband, they turned around, they went back. And they they did a finger prick. And I guess Of course I'm not there. So I'm at home like googling, you know, glucose and urine and trying to like, you know, put my wrap my mind around the options. And I guess when they checked her sugar the first time, she's actually low. And the doctor I now know this, you know, after she called me explained what happened, it was low. And so that panic them too, because now that she has glucose in the urine, but her sugar is low. So they had a cookie at the office. So they gave her a cookie and waited a little bit of time and tested her again. And I guess her sugar at that point came up to about like 90 days after the cookie. And so the doctor called me as Paul was driving home and said, Lindsay said, Our she said, You know, this is what I want you to do. She said I wanted to come home, this is really weird. It's it's a little weird that she was low. But our I don't trust our machine. Which that's, that's reassuring. And so she said, She's a great doctor, and she said, but I, I feel like this is I feel like this is you know, you're gonna need to go to the emergency room. But here's what I want you to do. She said I want you to when she gets home, I want you to feed her a normal meal. But I also want you to give her like to have like Gatorade or apple juice or something like that. And I said, Yeah, I have that. And so she said, Okay, I want you to give her a normal meal, but also give her make sure she has a drink that has high sugar and and then I want you to get packed and I want you to take her to the ER, she said I'm going to call ahead and let them know you're coming. I know somebody's over there. And I just I just want them to have a heads up and I was like, Okay, so that's what we did. And I packed up and I took her to the ER, and it was so funny because the ER acted like, they had no idea we were coming. And so I kept thinking that's weird. But then they tested our sugar pretty soon after we got you know, back to a room and she was 609. And so they were like, okay, you know, she has diabetes. Actually, they didn't even tell me that that moment. They just said, we need to admit her. And we will, we'll be back, you know, kind of thing. So it wasn't until we got admitted and up to the pediatric unit that I think I finally asked the doctor. So does she have type one diabetes? And they said yes. And I said for sure. And they said yes. And so what's funny about that story, though, is that the pediatrician had called the Children's Hospital an hour away. And that's who she had warned we were coming to the wrong hospital. We went to the wrong hospital. I either I either she forgot to mention that. Or I was just, you know, in my own state of shock and trying to figure things out, but I didn't hear that part. And so when I called her from the hospital, I said, well, we're here and here's her sugar, and they're admitting us and she's like, that's so weird. Where are you? And I said, I met, you know, therapists at a hospital and she said, Oh, I wanted you to go to St. P and I was like, Oh,

Scott Benner 9:56
well you're allowed Layla was an older and she'd be like, I can't believe all the people Could have adopted me these people got me.

Mandy 10:03
I know. But you know what's crazy is if we had gone to St. Pete we found out later that they wouldn't have admitted us, because she was not in. What is it D? Yeah, she was one. That's what they want. And so they would have literally given us an on, they would have given us what we needed to go home, right and then start things. And so instead, we ended up staying in the hospital for three days and got all of our training and everything while we were there.

Scott Benner 10:33
That ends up being lucky for sure. Because, yeah, I don't like the idea of just being like, hey, okay, well, you have diabetes. Here's your stuff, and we'll see you

Mandy 10:40
later. Oh, I can't imagine

Scott Benner 10:42
we don't have any beds for this. And yeah, we spent three days in the hospital I think. Okay, and and that was, that was just enough to panic me and teach me nothing.

Unknown Speaker 10:53
Yeah, that's actually somewhat familiar to Yeah,

Scott Benner 10:56
I felt pretty firmly sure I was gonna kill her by the third day. I was like, Okay. It's just been explained to me that I'm I'm outmatched. Yeah, well, okay, so, jeez, that's a lot. You're gonna do, let me just type something into my browser, my Omni pod.com Ford slash juice box quest, a free demo kit. There's a handsome man holding a book and smiling. boy do I scroll down it says, Hey, you like freedom? Don't you try a pod for free to experience how literally it can truly be. Actually, that works liberating, which now makes more sense. Try a pod for free to experience how liberating it can truly be. I do not practice these ads. If you're considering insulin pump therapy, it goes on to say the best way to understand the comfort and convenience the Omni pod system offers is to try it firsthand. I could not agree more. So get a free demo kit, which includes a sample nonfunctioning pod and see what you think there's no obligation to buy. It says here that you can wear a non functioning pod to see how it feels, you can find the area on the body that works best for you. And you can feel the freedom you could have with the Omni pod system. That's it. And there's this adorable little kid here playing with the toy dinosaur. Request my free demo kit. What do I have to do? First Name, Scott. Easy. Last name. Better. I know this easy zip code. I know my zip code, it's five digits. Then an email address, which I also know, I'll use my Arden's day email address, and a phone number. Okay, and then click the big red thing that says request your demo. That's it. Listen, please go to Miami pod.com forward slash juice box. Or if you want to help out the podcast, find the links at Juicebox podcast.com. Or in your podcast player. Because when you make the clicking on those links, you know, Omnipod knows she came from here? You're gonna do it. You should. There's ways people do things. And the minute you disrupt them with, not what they're expecting stuff does get thrown into upheaval. Yeah. And you see at the doctor's office, like the doctor's office is accustomed to things going in a certain way. And then the minute it doesn't kind of work out, right. Everybody gets nuts. Like I mean, you know, like, it really is, do you ever call someone on the phone like a customer service person? And if you if you get chatty with them, and don't let them go through their script the way they're supposed to? inevitably at the end, nothing works out the way it's supposed to for you. Right, because they're on autopilot, and then you start interjecting different information that they're not accustomed to dealing with. I think that happened to you. Maybe maybe twice, by the way.

Mandy 13:40
Yeah. Yeah. So that was our that was our entry into this world.

Scott Benner 13:45
Okay. And you and I are talking because, yeah, this this poor podcast needs to come out more frequently than once a week because I I'm so slow to get to people. But you and I spoke originally back at the beginning of 2017. This is all free people out when they end up listening to it, like in the spring of 2018 or something, right? But um, but you were just like, like, Hey, I'm I think I'm I found the podcast, and we're getting a pump. And I think it's great. And you were just like, do you have any ideas of things I should know or wonder about prior to going in for this pump class. And I much like I usually do email back and say, I really don't want to type all that out. So I'd be well, I'd be willing to talk to you on the phone. But I there's no way I'm going to type any of this out. Right? Because I'm lazy and my typing skills are not great. For a person who wrote a book. I don't type well. Look sort of fascinates you. Yeah, it definitely is. I was much better during that that period of time I was writing but now I I look down again. I'm like, Oh, I'm not as good at this as I was. Oh, so we had this really nice conversation when I thought well, and you know, Time passed. I must have mentioned during the conversation that this would be interesting like hearing about the transition from you know, because you were really going to Do it from needles and meter to a pump in a glucose monitor. And you did end up with a dexcom and an omni pod, right?

Mandy 15:07
Yes, I did. Yes, I did. Yes. After we spoke really your podcast, it was so enlightening. I don't even remember. Like, you know, the process of my brain going like me, maybe there's a type one diabetes podcast out there. I should try to find and but I did, and I found yours. And it was, it was one of those moments where I just I realized that there was this whole other side. That I can't say I was, I definitely understood that there were pumps out there. And there have been some conversations between my endocrinologist and AI about a pump at some point. But the CGM for some reason that was nothing that that was not ever mentioned, or on my radar, to be honest, the only thing I had been hearing about or diabetic alert dogs and I was thinking, well, we need to get one of those because that would be fabulous for something to be able to notify us of her sugar, either rising or dropping and, and so when I found the podcast, and I started listening, it kind of felt like a foreign language for, you know, several episodes, because I'm thinking I've just not ever, these are mind blowing concepts. And there's actually a device out there that could do what I felt like sounded like what a dog would do. And it sounded maybe more manageable. I think Kayla would still like a dog at some point. But for right now, it was just like, wait, we could do this.

Scott Benner 16:32
I have to say this. And I don't know why Dexcom doesn't use this in their marketing materials. But the Dexcom does not crap in your yard.

Unknown Speaker 16:42
Dancing for diabetes, dancing. Number four diabetes.com. type it into a browser dancing for diabetes. By

Unknown Speaker 17:02
really huge upgrade, really edge upgrade.

Unknown Speaker 17:04
Yes. Very true. Yeah,

Scott Benner 17:06
no, I, I do think that that's I struggle with the idea that there should be an entry episode maybe. But I've watched over the years blogs struggle with that idea too. Like there should be like, hey, if this is your first time, or here's some definitions, but it's so dry and boring. And like, I just think that when people listen, if they really want the information they'll listen through and they'll figure it out. If Yeah, you know what I mean. And maybe that's the best way to reach the people who are ready for it is kind of my expectation at this point.

Mandy 17:38
Well, and I think it's true, my personality is definitely one to like, be an information gatherer first and kind of think through all the options and think about the things that could go right and things that could go wrong and play out the scenarios. And that's what happened by listening to real people tell their stories, you saw a lot of variations by listening to the podcast of, I don't know, it just it allowed me to just kind of quickly, I felt like, get a bunch of information and play out some scenarios. And it really piqued my interest. And I went to my husband, I was like, Okay, I know what we need to do. He was like, okay,

Unknown Speaker 18:19
so it's gonna cost them Yes, exactly. Exactly.

Mandy 18:22
To the bed, probably his first question. But, you know, he, he has like, okay, and sure enough, I was having a, you know, she was having her three month appointment with the endocrinologist coming up. And so we went in and, and I started asking questions, and she said, Well, the first step for us is to do so I definitely think that, you know, you guys are great candidates for both pieces of, you know, the both devices and the but the way we do it is you have to go to a class first. And so that was really what then made me start thinking, Well, is there a right way to do this? Do we do the Dexcom first, or do we do the pump First, we do them at the same time and be super overwhelmed. I mean, you know, that's what I was thinking and you kind of help say, helped me realize like, just just start the process just well, however it ends up you'll be happy, whichever comes first, which if it happens at the same time, you'll you can do it. And that was very encouraging. And so the class was great. They had vendors there from all the different pump companies. And they had Dexcom there. And so we all five of us went to the class and that was good for my husband a lot of like the terminology I was already familiar with thanks to the podcast, but for him it was it was like really him hearing it for the first time and so he left excited and Kayla seemed excited. We got to the rep locally for Omni pod is also type one. So she was wearing her she was wearing her Omni pod and so Kayla was you know, intrigued by that with the sticker and whatever she had. And so we took the sample and I had heard you mentioned you know, on the ad to order your free sample so you can just wear one and I We all happen so fast that I didn't get to that point and set that we were just at the class and she had them. So we came home with that and put it on her. And that was, that was great, because I would encourage any parent who's thinking about it for that to be, you know, something they do, because we wanted to know if she would, how she would react to it. And she forgot about it quickly. And, and really was like, Yeah, it's great. I think I think it's gonna work. And so we then put in our prescriptions, and the Dexcom got approved quickly and pumped, took longer. So it was April that we went to the class and we got our Dexcom. The end of May. And

Scott Benner 20:41
what that is quick, yeah, that's great. And yeah, it was great. But then you got but then you started getting data feedback without the Oh, like, manipulate the insulin as well as you could with the pump. Does it make you crazy? At first?

Mandy 20:53
incredibly frustrating. Yes, that was, I would say that was it was a downside and an upside because it actually made us, you know, just that much more eager to get the pump. We thought, okay, that's okay, now we can see what's going on. And it's insane. And we can't wait to think that the pump is going to be able to allow us to fine tune, you know, her doses and hopefully get this under control better. Yeah. And so. So then, yes, we were frustrated waiting for the pump waiting for the pump. But

Scott Benner 21:24
it's like I have good news. I have bad news. The good news is we did the right thing ordering this pump. The bad news is we're really not very good at this. Yeah, yeah, exactly. Because they because when they put you in that situation, where it's like, well, you put some insulin in and then you test Three hours later. And you go, oh, wow, look, she's 180 we didn't do bad. And then you get the dexcom. And you realize that her blood sugar went to like 300, it sat there. And then it came out at 250. And it slowly drifted down. And by the time the three or four hours went by, you were at 180 thinking, Oh, we only missed by a little bit. But yeah, not the truth.

Mandy 22:01
No, it's not. And I did, I felt very, I kind of felt angry, because I felt a little deceived. You know, like, why is this the Why is this? What we've been instructed to do? It's, it's not the most effective way. So yeah,

Scott Benner 22:14
it will mean the answer ends up being that I don't think they, they, they just don't go about it the right way. I mean, in my opinion, it all starts it ends, it starts and ends with understanding how to use the insulin. That's why it sounds so simple and probably annoying to hear. But you have to understand, when the insulin starts working, how it starts working, how to balance it against the carbs, you know how to stretch it out when you need to how to Pre-Bolus when you need to, if you if you don't do those things, it's just a I don't know, it's just a crapshoot laughs crap twice in one episode, I don't think I've ever said it before. And I also can't get the thought out of my head that I have to slip in at some point, the Omnipod will never pee on your carpet, but it just it just, you know, it's like, it's just such a simple concept, then they give you this thing that doesn't work the way you're coming in from the outside with a simple expectation of like, hey, insulin brings your blood sugar down. So it makes sense that you put it in and it starts to bring your blood sugar down, but doesn't work that way. But no one tells you that no one, no one goes, Hey, you're going to inject this, it's probably not going to do anything for 1520 minutes, some people a half hour, some people longer some people shorter, you know, yeah, there's three different, you know, main brands of insulin, and they all work sort of differently in different people. And no one says any of that to you.

Mandy 23:38
Right? It's and, and with the Dexcom I felt like not only did we not feel like we could, you know, fine tune doses because of using injections, our pens, our whole unit pens, so, you know, we were okay, well, should we give two or three, you know, I mean, we couldn't do 2.3 work we would want to and then also, because you're still using injections, we would want to maybe we would want to correct when we would see the Dexcom showing us something was making her going higher than we if we missed it, you know, but then that meant, you know, sticking her again. And so because she was not used to we didn't want her to feel like the Dexcom was suddenly you know, a bad thing because it meant that I got you know, seven shots a day instead of four. I was getting you know,

Scott Benner 24:29
this thing you said was gonna make things better is getting me stuck with this needle. Yeah,

Mandy 24:32
right. Yeah, yeah. And so the pump we knew would eliminate that once we got it. But one of the you know, one of the things I would tell parents that are making the transition is, you know, we well, one good thing was that we were headed into summer, which for us, we felt like hey, this is a great time to, to kind of go down this path because we're going to have a learning curve that we're going to have to go through and my husband is a teacher, actually at Kayla's school. which works out very well. But we were like, okay, it's gonna be summer. And so that was a plus timing wise for us. But because we didn't get that we ended up go ahead and tell you we didn't get the pot on the pot until a week and a half before school started. So what we, what we thought would be a wonderful transition said we spent the whole summer at the beach in the pool watching her sugar go, you know, nuts. But we did take we did one thing that ended up being in hindsight being a good thing was that we waited for a Saturday even though I think we got the Dexcom like during a weekday, we waited until a Saturday and we just kind of cleared our calendar. And we, we just allowed as many hours as needed to set everything up. And it was definitely being about a four hour process, which I'm going to say is probably pretty long, because there was probably things that were happening in our household during that time. But, you know, it takes a little while to get all of your smartphones hooked up the way you want, and just do everything. But so we just we kind of took all that pressure away by just having an open day to do it. And one thing we had done also was I had pre screened this some YouTube videos, because I wanted to understand what we were about to do. And I will say that that ended up being really helpful for me, even though it kind of scared me because I did see some videos of kids crying, you know, when they got it done to them. And I thought oh boy like this maybe what advice? What are we getting ourselves into? Yeah.

Scott Benner 26:36
What a benefit. I didn't realize. Yeah, exactly.

Mandy 26:38
But I was able to go ahead. And then I found the ones of kids about her age that were doing it and weren't crying. And those are the ones I showed her. Because I felt like if I didn't want her, I wanted her she was nervous. I could tell she was nervous. And I was nervous trying not to show it but she was showing her nerves a little and so watching those videos and familiarizing myself with it. And her was a huge plus, I think because then when we all like, you know, gathered around to do it, I was the one to do it. Because I told my husband I said, if I do if I don't do it, and it hurts her, then I don't know if I'll ever be able to do it. But if I do it, and it hurts her then well too late. I mean, I already did it, you know, but if you know so that was Yeah, so that was my that was my process of thinking on that and it worked out she she actually did great with it. She actually looked at me afterwards like oh, okay, that was it. That wasn't nearly what I expected or whatever. So yeah, that was a plus.

Scott Benner 27:39
I think most of that crying is anxiety.

Unknown Speaker 27:41
Like Yeah, what's

Scott Benner 27:42
the what's good what's about to happen feeling especially with you know, and then then it the one thing about the pod too Is it with self insert so it clicks Wow, there's a there's an audible payoff at the end and almost I guess almost like reinforces the idea that like Oh see something was gonna happen. So you're all you're all ginned up and like tight, then you hear this click. Yeah, but nothing really happened.

Mandy 28:08
Right? Oh, he's still she's still dropped, jumps at the click, even though you know, she continually says like, no, it's fine. I didn't hurt you know, only one time and dad did it. I will say he didn't pinch up the skin well enough around it. And she looked at me like he's never doing that again.

Scott Benner 28:28
That job but my wife messed up one time putting a dexcom sensor on and Arden like talks about her like she's completely inept human. We don't let that woman near me with that stuff. And I'm like, I gotcha. But yeah, just it's it's ridiculous. My wife's fine at it, you know?

Unknown Speaker 28:45
All right.

Scott Benner 28:46
But no, I hear that like Arden does the um, she wants people to be quiet when she puts it on because she counts clicks. It clicks is it's like click click, click and then it inserts Ardennes like in but it never really inserts on the same click.

Unknown Speaker 29:01
Like for the pod. Yeah, sometimes it's the fifth

Scott Benner 29:03
one, the sixth one the fourth. You never really know. And she just like she wants to hear them. I don't. I'm like why do you care? And then she then she flinches, and I inevitably did hurt and she is No.

Mandy 29:16
Yeah, that's exactly right. That's exactly how Kate was with the pod. Yeah.

Unknown Speaker 29:21
You know, and she's like, Yeah, I

Scott Benner 29:23
don't know. I was like, okay, so well. So okay, so you lied. So you you went in, you asked for your stuff. It took a little bit of time, but you got it. And then it's interesting because you got the CGM first. So guys, listen, this episode was obviously recorded a while ago so you hear me talking about Dexcom g five and calibrating and everything but today's today, and the Dexcom g six is available now and it doesn't need to be calibrated. It's also FDA approved so you can make insulin decisions without any finger sticks. This morning while I was editing the show art it asked me if I can make pancakes because this is her last day of summer vacation. So I made her three huge pancakes from scratch. actually use a simple recipe that's on my blog. But that's not the point. This isn't a cooking show. Anyway, I made her three big pancakes, put them on a plate, give her a little turkey bacon, she put a little syrup on the side took a drink left, we made a big Bolus. We did a Temp Basal increase. About 45 minutes later, blood sugar was like 110 diagonal up and we gave her more insulin, and it's still one den. How do I do that? I mean, you listen to this podcast, you know how I did it. I watched what the Dexcom was telling me. And I did it. While Arden wasn't with me, by the way, sure she was just upstairs. But I would have been just as comfortable doing that because the Dexcom share and follow features. If she was at school, or at a friend's house Dexcom share and follows available for Android and Apple products. There's no time left in the ad now to talk about how amazing it is to be able to see someone's blood sugar when they're not with you to see how fast it's moving and what direction it's going. But it's amazing. All you have to do to get started today is to go to dexcom.com forward slash juicebox. Or again, if you could use the links at Juicebox Podcast comm or in the show notes of your podcast app that would make me happier. But it would just make me happy if you tried the product. Back to the show. Isn't Mandy good? Should probably just call the episode Mandy. Before I get to that, I want to I want to just go backwards for a second and say that what you experienced like not understanding what a glucose monitor was, and no one telling you about it. That is I think quite literally next. coms biggest hurdle is that it's just it's it's one of those crazy things. I always liken it to TiVo, I don't know if you have a DVR right or not, right? But TiVo is an incredibly better version of a DVR, like it's just any any of your bank, whatever you have from your cable company is nice, I'm sure it's great. And it records your television and blah, blah, blah. TiVo is so much better. But how do you tell people about that? Like, how do you let them know there's a thing out there, when it's not something that everyone has, when it's not, you know, it's not intuitive to believe that there's even a thing that would tell you what your blood sugar is doing? Like, it's not something you would just know, when you're bringing brought in from the outside. And you know what I mean, like, and you don't know anything about diabetes a day before. So their biggest their biggest hurdle still is just people who live with Type One Diabetes, even just understanding what it is. And it I find that to be terribly tragic, like, yeah, it just really is like that. There's something like, forget the business of it or anything like that, that there's something that tells you how fast your blood sugar is moving, what direction it's going in? And it's not something people know about. That's sort of terrible.

Mandy 32:50
Yeah, trying to deal with it with static information, trying to make decisions based, you know, based on something that is a standalone number that Yeah, you have no idea like you said, the direction it's moving or what it's been doing. It feels like you're just it's like it's like you're dosing blind before and now it just feels like, I mean, are there still times where things go totally nuts? Yes. But it's been a huge, like emotional and, like mental relief. Once we once we felt figured out, we could trust the information. You know, I mean, that took a little bit of time, but then it was like, it changed our fatigue as caregivers immensely.

Scott Benner 33:34
I today, like just before you and I got on is a great example. Arden's at school, had her blood sugar is I think she was 104 going in the door at school, and it was nice and steady. But she was having she was having this, you know, the drift down where the the numbers moving, but the arrow never indicates that it's moving that fast, right? And I kept thinking, like, I it'll be okay, it'll be okay. And she got the ad and I went, Alright, you know what, I'm gonna shut her bazel off. But then I'm texting her and she's not answering. Like, this timing of this is gonna get messed up, because by the time I get her, the bazel is not gonna work. I know, right? But, but Okay, so, you know, I'm texting her texture. Finally, I get the text back. I'm trying to take a quiz. And I'm like, I don't care. Just, like, shut your bezel off. And I suffer an hour. I'm like, I'm gonna give this a shot. I said, but look for another tech soon, because we might have to put a little juice on this. And I waited and waited and went 80 and 76 and 72. And I was like, come on, come on. And right. As you and I were getting on about a half an hour ago, it was right at 70. I'm like, Oh, is this gonna work? And you and I were on for about 10 minutes when I was like, Alright, she needs like a little bit of juice. Because she went to 68. I was like, Yeah, right. So she drank a half a juice. She waited, and now it's holding at 68. And I can tell on the Dexcom the bend of the line, that it's coming back up again. Yeah, so not only did you know, Arden didn't have to go to a nursery Go, you know, like, drink a ton of stuff and have her blood sugar shoot back up again. But her blood sugar is gonna sit right around 70 for probably end up being like 40 minutes. And I can tell by the bend in the line for my experience, she's going to go back up to about 85 or 90 and sit there again. So we address this kind of drifting low blood sugar without creating a high. Yeah, all that comes from the information that I get back from the glucose monitor, and the the ability to shut off or bazel. And all these things that I find myself repeating over and over again, but I don't think anyone really appreciates until they get the stuff in their hands and they can try it. What was your experience? Once you had the gear, and you were trusting the information, because that is I don't know if you've ever heard me say this convoluted sentence on the podcast, but you have to make these decisions. You have to trust that what you know is going to happen is going to happen, which is not always easy to do in the beginning, I guess.

Mandy 36:00
No, it's not. And I think that, well, the first the first lie we told ourselves was okay, well, I'm like we're gonna set you know, we set the low, right? I mean, I think we, you know, we put it for at as far as an alarm, you know, for an alarm to go off. And but we, you know, I just thought, oh, man out of the gates, we are going to like, we're going to put the high, let's put, let's be a little realistic, and let's just put it at like 200. Well, for now, for the first I mean, within within, like 12 hours, you know, she's like, we're it's beeping, it's going off. And it was always because of the high. That's what we definitely, we kind of felt like we got it. So we would not feel as anxious about her going low. Because I think you know, as parents, that's what you're, that's what you're taught to be really scared of. and

Scott Benner 36:53
common sense tells you to be more scared of that in the boat.

Mandy 36:56
Right? Right. And it but it took it took listening to your podcast to realize that I needed to be just as concerned about the highs To be honest, and the long term things that would come come into play by just you know, her allowing these high blood sugars to continue. So we were obviously over ambitious at how well we thought we were going to control things once we could see it. Because that's when we realized that, you know, the pump was going to come into play, hopefully with the highs. But so we took the we just removed the alarm for the high for a while, like we just didn't even want to know, we didn't want to be going off because it was going off all the time. But yeah, I think that for us, it was once we learned to trust it, I first I think my husband thought I might I think he thought the same for himself honestly, that we might become a little obsessed with watching her numbers. But I would say that it took about a week before, you know, we might we were still you know, testing her here and there, not just that the calibrating times but testing her periodically, just to kind of see how accurate the Dexcom was. And we, you know, took about a week for us to realize like, okay, you know, we it's it's right, it's accurate, and at least within, you know, a small margin of error. And so, yeah, it didn't take long for that trust. And for us to realize that because we trusted it. We weren't, you know, stocking the app and trying to see, you know, where is she? Where is she? Where is she? And we really just started to let it tell us and use it as use it as information instead of using it to like, you know, just totally dominate our life.

Scott Benner 38:33
It's not a report card. It's it's helping you understand, but I have two thoughts for what you just said. So the first one is the concept that people are going to get overwhelmed with the data. And just, you know, I think that's largely kind of a misnomer. Like, it's, it's, it seems like it's a reasonable thing that's to worry about, I guess, like, I know, as a person who thinks of myself as somebody who puts information into this space. Like, initially, I was worried about that as well as like, oh God because but I realized that I was worried about it because I had found this group of people online who were insane. Right, and they were helicoptering with it and, and I was like, oh god, this is gonna happen to everybody. But then that wasn't the truth. Not everybody felt that way. But moreover, the people who began like that eventually stopped being like that, too. Because they went through the process that you're talking about. It's just like anything else new people have been around a little longer, like that's not the right way. You know, and, and it ends up I would never be concerned about that. It's not true. Even people who obsessively look at the numbers. I think that eventually it just it lessons for you. It goes away. I can't tell you how infrequently I look at Arden's butcher I look at it more during this podcast. So we can talk about it. Like you know we were just talking about Arden's right Little things like she's 76 right now. I can't tell you how happy I am with that. Right like I get it. Like that's, it's she's gonna keep drifting up, and I'm telling you, she's gonna get the 85 or 90 in about an hour or 15 minutes, I'm gonna have to Pre-Bolus or for lunch anyway, it's perfect. Yeah, but but my, my other thought was, is now you've got this high, this threshold, and it's going to tell you when you go above it. And in the beginning, you don't know what you're doing with the insulin you think you do. But you're really you really don't and neither does anyone else right away, you know. And so now all you're seeing is God, we miss so greatly that I can't even put this high thing on, it's gonna be all the time. But in the end, that becomes a lesson about Okay, well, obviously, we're not doing it quite right. So what was the first thing you figured out? When you realized you were had no ability to stop it from going over? 200? Like, what, what what was the next step you took? You guys have been listening for a while, you must know when the ads are coming. Right? This is one for dancing for diabetes. So it's really quick. I've already told you what Elizabeth is doing there with dancing for diabetes, just helping kids living with type one through dance. Well, she's also putting on a show in November, as she does every year. If you're in the Orlando area, they would love for you to come out. good at dancing for diabetes.com to find out more. That's it, dancing, the number four diabetes.com. What was the next step you

Mandy 41:21
took? We were taught early on that. Or we were told to wait and doser after her meals, because you don't know she's going to finish everything. And you know, she could be at that age. And honestly, yeah, I can see that in the very beginning. But after a while, you start to realize that your child's going to like what their appetite probably is going to be and what's realistic for them to eat, especially when you are in this situation, you're more hyper focused on, on, I guess judging that. And so I think for us, we realized our first change was okay, now we have the Dexcom. And we can feel comfortable dosing her ahead of her meals, because that's something you would talk a lot about. But that is was the first step for us to seeing an improvement. With the drastic highs, I would say that we and so that took a little time for us to make that realization that that's what we could, that's what we could start doing. Because if we you know, and then of course, there's times where we miss it as far as the the length of time but almost, or the food she ate we that's when we started to really try to understand her digestive tendencies, you know, as far as what kinds of foods hit her faster and all that. But we didn't even have any way to begin assessing that until we started to give her her bolus ahead of her meal and timing it. And so that was that was probably the first change that we got to make

Scott Benner 42:54
what's funny, because what you just said, echoes what we said five seconds ago because before diabetes or with your other kids, have you ever thought Oh, gosh, we have a real problem here. These kids don't eat. Right? Right, right. You've never thought that but the minute you bring the insulin in, it seems like a reasonable concern like oh gosh, what if they don't finish their lunch, and then you realize, sometimes you put a full plate in front of somebody and they don't finish their lunch. And now you go, Oh, god, this is a real concern. You've just reinforced your concern with more specious information. And so it's, I mean, I get that kids don't always finish their food, but there's like I tell people all the time, especially with little kids, there's got to be some amount that you're comfortable, they're always going to eat and and so it just Pre-Bolus that part if you can, and then and then you know if they keep eating just put the rest of the insulin and right away Don't don't don't wait around to go Oh, I wonder if diabetes won't work today. It's gonna work. You know, the foods gonna make your blood sugar up, get the rest of the insulin and it's a such as simple. You need those simple concepts like, like when I talk about, you know, because I think you air everyone airs on the side of caution so much, and they do it in so many aspects of diabetes. That's how they end up with high blood sugars. Well, we can't Pre-Bolus err on the side of caution. What if they don't eat? I don't want to use all the and some because what if I count the carbs wrong? err on the side of caution. But you know, that always leads to a high, you know, sure, once a month, it might be a low but are you really gonna trade 29 days of highs for the one time they're low? Right? You know, and and how do you make those decisions and we start talking about learning how to manipulate the insulin. The one thing, gosh, that I said that I have to be honest, I did not think was that impactful that I hear back from so many people in so many walks of life, that when you're learning how to use more insulin, just also bolus for the amount of juice box because you could always give the juice box to counterbalance the insulin like like it's a safety net for you when you're testing

Mandy 44:54
right. How much more when you're really you know, yeah, and when you're doing injections, that's another thing for us. We felt like our hands were more tied when we were doing injections. Because if we did give it to her up front, and we didn't think and she ate more than what we were expecting, then we immense met us giving her another injection after she ate, and whereas with the pump, that changes all of that, it's a whole different ballgame. And so yeah, it really was the see having the two go hand in hand, like I really, I just really get that now that they play off of each other. So well, they create together, they create, in my opinion, the the best case scenario to attack this.

Scott Benner 45:36
So it's funny because you hear adults a lot, say, Well, I'm tired of a pump, and they want to go on a pump break. And people do that right and injections, I'm doing just as well with injections. And they say that, but they never really tell you what that means. You know what I mean? Like, it's just like saying hello to somebody and say How you doing, I'm doing great, Bo, if you could follow him around for three days, you might find out that, you know, their wife's cheating on them. And they can't afford to get their car fixed. And Baba, they but they told you they were doing great. And so we never know what that means. And in this space, there are very few people who are willing to say, these are my results, you know what I mean? But we're always willing to say this is what I do. Now, I don't in any way, not respect the concept of burnout or just being tired. Or you might just want to do it for a while, maybe you are going to switch back to injections for a while because you're burned out as an adult. And it might lead to slightly higher blood sugars. And that's not the end of the world. I completely believe that. But the problem isn't. The problem is that sometimes people hear that and just think, Oh, I have the same Can you just there's no, unless you're willing to and I've only talked to a couple of people in 150 episodes who are willing to just inject every time you need to. And there are some people who are willing to do that, they're gonna be fine. But if you're not, you can't, you can't manipulate things without a pump, if you're not willing to inject all the time. And so right. That's the real honesty of it, you know, somebody who's now down to like I'm injecting before my meal. And then I wait three hours again, there is just unless they are magical, there's no way they're there. You know what I mean? That they're, they're a unicorn, yeah. Actual unicorn, there's no way that they're doing the same thing without multiple injections. Right. And so I think people get confused with that. And they go, okay, or this is good enough for this is, you know, once people set the expectation that this is just how it goes. And then they just accept it, though. My blood sugar went to 250, it only sat there for 45 minutes, and it came back down. Of course, it did get to 180. Before I had to bolt, I didn't check myself again. And then they got low later. Well, what like, like, you know, like, when you had your pump, you were doing it a completely different way that wasn't resulting in a high and it wasn't resulting in a low like that.

Mandy 47:56
And moving to a for us seeing actually funny story about going on a pump break. But first, it's just funny. One of the things that we feel like has also been and maybe it's just our imagination, but I don't think so based on the story I'm about to tell you but going to, I didn't understand that the pump is utilized fast acting insulin on a constant drip to substitute for the lantis. We were using, I got in. I didn't totally understand that until I went to the class. And that seems to have been something that right away we noticed an improvement with and we only felt like because we knew we were still not doing a great job at the Bolus part. We were learning that that fast acting insulin dripping, you know, for the 24 hours that seemed to have a better effect on her than the lantis ever did.

Scott Benner 48:54
Yeah, like that. That's slow acting insulins an inexact science, it's amazing insulin, but it's an inexact science, it I don't know if anybody's ever talked to you about but you injected it crystallizes under your skin and like a rock, and then and then it basically melts away slowly.

Unknown Speaker 49:09
I wondered.

Scott Benner 49:12
And so there are times when your body absorbs it faster, it disintegrates quicker, you know, whatever it ends up being that's how you see like kind of lows with and then and then sort of at the end of the 24 hour period where people see highs because the companies that make this insulin can say all they want that it's real steady for 24 hours, but that's kind of BS. And so some people split their Atlanta so their level of error or their whatever the other one is, like they'll do half of it or you know, or figure out what the breakup is and do like every 12 hours. Wow. And try to try to keep it more consistent in their in their system. Interesting. Yeah, but nobody again, no one's gonna tell you that, you know, right.

Mandy 49:51
I'm actually getting notifications about Kayla right now.

Unknown Speaker 49:55
What are we looking at? I just

Mandy 49:56
don't know. I don't want to hang up on you by looking. Let's see. Are you still there? Oh, man, you're doing okay. All right, let's see, I just didn't know if I changing screens. So she's 77 diagonal down, but it's 1045. So she's actually about to get a visit from her dad to dose her for lunch. So he'll still, he'll take that into consideration. But it's lunchtime, but she has been at. Let's see, I always think it's a win for for 24 hours, we've not gone over 200 even like in a weird spike. Like for me, that's like, yes, that's been a good 24 hours. But yeah, for last 12 hours, or even six hours since breakfast or the early this morning. She's been under 120. And pretty steady. So that's, that's a good, I'll take that. That's it.

Scott Benner 50:46
And I don't, I don't want to boast my clairvoyant skills. But Arden's blood sugar is 95. So nice. Yeah. And so but that's a it's such a good point. By the way. two things. First of all, 77 diago, down right before lunch. huge win. Huge. Yeah, fantastic. And what I just did by telling you, I did this, I did this, I did this, and I expect her blood sugar to be 95 that two people should not be like, Oh, well, this guy is better at it than I am. What you should think is, I used to be terrible at this. But I've had enough experiences in these moments that I actually, I just know what to do. And it works out.

Mandy 51:23
Yeah. Well, and I think it's just a long time ago, I when I would hear you talk about a straight line, like, especially overnight, that's still a rare thing for us. But when it happens, or even if it happens for a couple hours in a row. Now that I actually see that happening, I wanted it to be true when I would hear you or one of your guests talk about it. But it's like, that gave me hope. But now it's a reality sometimes. And so it makes me feel like okay, I can't always make that happen. But it technically is achievable. Like there are times where I can I can hope and expect it to happen. You know, it's doable.

Scott Benner 52:01
All that you should take from the fact that it that you can accomplish that is that it's possible. Yeah. Because that possibility is enough for me, at least in my mind to stop me from going Oh, 200 nothing I can do about it. Right? That's all because there is something I can do. A person contacted me this morning, through Instagram, which by the way, people I do not like chatting through Instagram, but Okay, that's how you do it. And, and so, and she said, you know, what do I do about the dawn phenomenon? And she told me what she was doing, like, are you doing all the right stuff? And she's like, well, it's not working. I was like, well, more insulin. Like it's not really like, you can like stop searching for like, why like, Oh, it's the dawn phenomenon. No, your blood sugar is higher? Oh, no, it's Chinese food. No, there's a lot of carbs in that. Like, like, it's just all of this stuff is the same thing. If your blood sugar is high, you need more insulin. And if your blood sugar is low, you need it lessens when you had to time it better. It's not like some there's not some magical phenomenon. that's changing the nature of diabetes, there is something pushing your blood sugar up. But the The answer is still the same.

Unknown Speaker 53:07
Right? Right. Yeah,

Scott Benner 53:08
I need more insulin. And so it's it's not an even as I'm talking to this person, she listens. She'll know. It's gonna be hard and high. And like, she didn't do anything wrong. And I was being like, flippant when I was getting back from like, you just need more insulin. She laughed. She's like, I know, but like, what about this, and I'm like, you're not doing anything wrong. I said, the only thing I can't give you is like you're an adult. So there's no one helping you. So if you slept through an alarm, you know, that's, that's, that's the only X factor between me and her is that she's doing it herself. And I'm doing it for somebody. And then still, I sleep through alarms still aren't, are not a great 24 hours yesterday, except for the alarm. I didn't hear at 2am that, you know, let her be a little higher than I wanted her to be until we finally until my wife was like, are you hearing that? Like, what? Anything, which is terrible, because I am apparently as I'm waking up, rude and flippant when I answer people's questions. So my wife's always like, Why do you talk to me like that? I'm like, I don't know what I'm saying. Do you want to sleep?

Unknown Speaker 54:13
And? Yeah, yeah,

Scott Benner 54:16
that sounds right. Yeah, it's just um, you know, Kelly, and I had a pretty heated conversation yesterday, because we are still in this spot where the way I do this. It's not, it's not natural for her. Like she's more mathematical. And I was like, though, listen, people listen to the podcasts whose brains work more mathematically to but they get through it. And I said, I don't know how to explain it to you. Like, quickly. I only know how to talk about it like for an hour once a week till it starts making sense, like, you know, and I was like, maybe you should listen to the podcast. And then she looked at me like,

Unknown Speaker 54:50
I'd say that was not the right thing.

Scott Benner 54:52
She's like, You're an idiot. And I was like nine and then she's mad at me. But, but is it's still very difficult to There's there are concepts that we talk about here every week that I promise you, once you understand them, will lead to exactly what we're talking about.

Mandy 55:08
Right. And that's the nice thing. I mean, Paul, and I try to mean, we because we both are pretty equally involved in her care. I mean, on the school hours, even though I might get notifications, and he might text me something crazy going on, or he'll say, Have you seen her sugar, you know, or, you know, whatever, and in a good way or a bad way. And we communicate a lot. But he's, you know, he, we're kind of equal. But that doesn't mean that there's not times where he hears something a tip or information on something, he kind of follows or tracks and vice versa with me that we are somewhat still challenging each other. And I think the biggest thing is hearing you, I've heard you say so many times, like, you know, you can spend a lot of energy trying to figure out the why. But in the moment, like, it really doesn't matter, she either needs more insulin, or she needs more sugar, and you just kind of have to do that. And he and I have, that's a challenge for both of us is because both of us want. We like information, we want to think through things, we want to make the right decision, or keep ourselves from making the wrong decision next time. So we both tend to be over analytical. And so that's been a good challenge for both of us at moments one of us will look at the other be like right now, it really doesn't matter why. Right? The bottom line is this is we need to act and then maybe we'll figure it out. And I know that the devices have the ability to make a note of maybe what you did or something along the lines. But we haven't really gotten into that. Do you do that? Ever?

Unknown Speaker 56:37
I always look at that and think what a nice idea.

Scott Benner 56:42
Don't do it, because then I'm going to go back and look at it. But I got no time for that. I'm moving forward, always moving forward. I listen, here's how I drive on the highway. If there's space in front of me where there's no car, I put my car into it. That is my concept. I'm always going forward. I don't doubt that it would might be helpful for me to look back and say, Oh, look at this, but I just my brain just does not work that way. Like if I wish, if you were with me today when I was stopping, Arden's drift and adding stuff at the right time, and then when she didn't get back to me at right time, changing what I did, there's literally no conceivable rhyme or reason to what I'm doing other than I'm looking at that line and deciding what I think is right. And I think that, as difficult as that is, if you really want to live as kind of unencumbered as you can with diabetes, that needs to be how it eventually occurs to you. Because you can't, I mean, really think of what you're talking about here, like you really want to send kale out in the world where she's busy doing math and constantly, all day long for 24 hours for the rest of her life, like you need to get her into a place where she just sort of knows, you know, and that's gonna take time, it's gonna take an incredible amount of time. But I think it's, I think it's the most natural way. And, and beyond that, I hate to talk like this. But in 2020, these things are going to start making a lot more decisions for us. Right, so and so it is going to be even more important for you to understand the magic of it, because so much is going to happen between that algorithm and that pump, that you're not really going to know why it's doing what it's doing. But if you see what the line is doing, if you see how much insulin goes in at that moment and the timing of it, you'll that to me, is it I don't know. It's not magic. It's like art. Like it really sounds like Pixie that

Mandy 58:46
Yeah, I wanted it to be the other way though. I wanted it to be Oh, and a plus b equals C. And that was extremely. Like, frustrating for me for I spent way too much energy being frustrated over that trying to be nice. Yeah, like,

Scott Benner 59:02
yeah, see, when I tell people you can't expect a light switch fix for diabetes. That's what I'm saying. Like, there's no, it's not a pill. It's not like a you know, you hear people all the time like, I you know, I'm going to get my bezels right, I laugh at them like what a fool's errand, you're going to get your appraisals, right, what and then the kid's gonna grow three more pounds, or you're gonna lose 10 pounds or you're gonna get stressed out at work, or blah, blah, blah, or this is all about a million different things are going to happen in your bazel needs are going to change. Just set a bazel rate that's about right and bump it around once in a while with temporary Basil's Yeah. Because you're, it's, it's, it's this dream that you're going to put everything in this exact situation, you're going to learn how to count carbs. Exactly right. And then once you do that, this is all going to be easy, but that's never going to happen. Like not for now at least, you know,

Mandy 59:54
right. And you know what that reminds me of? A quote that I that really was kind of you know, mind altering for me going through this was, I really felt that way in the beginning, just very, like this is not easy just kind of focused on it being hard. And I started to realize until I until I heard this quote, I didn't realize this is what I was doing. But I heard a quote, that was something along the lines of hard doesn't always mean bad. Sometimes hard is just hard. And I had started to make diabetes bad in because it was hard. And so that just really shifted me to go, you know what, this isn't bad. It's just hard. And something's hard, sometimes hard. It's just hard. And so I need to stop looking for easy. And, you know, just start to realize what I do have control over and what I don't, but that, you know, it's hard. And

Scott Benner 1:00:50
was that quote about marriage when you read it?

Unknown Speaker 1:00:53
It can be applied to a lot of things, it's certainly

Unknown Speaker 1:00:55
good.

Scott Benner 1:00:56
It's a very thoughtful way to think about it, like just because it's not. Listen, this is this is I'm gonna I don't I sound like a broken record at some point. But nothing is guaranteed in life. There's another thing that helps you like we all have this expectation like that you grow up, your parents take care of things. And some people don't have that situation. So life gets harder for them earlier. So when something gets hard back, they expect it. I grew up, I'm adopted. I don't know if you know that. So I'm adopted. I'm adopted. I was adopted right as I was born by people who divorced when I was 13. On my 13th birthday, my dad left my mom, like literally Wow, dinner for my birthday, he took a shower, and he left. My life got very hard right then and there. And, and so I'm accustomed to things not going well. We grew up without money. We grew up without a dad, we grew up, my mom didn't drive a car. You know what I mean? Like, like, we were like, things were hard. So I expect life not to be easy. And when it isn't, and when it isn't easy. I'm not thwarted by it. I don't go Oh, this is it. I was promised that, you know, I rose garden, I got a bunch of weeds. I just Okay, I'll let me get these weeds out of here. So we can plant some flowers. And and, and I think that some people don't have that some people just grow up in great situations where things are taken care of. For them, they have this really wonderful pie in the sky expectation that life is just going to go like that. And then can you imagine if you have that expectation, and then not only does it suddenly not go like that, but it's this. It's diabetes. It's not just like, my dog peed on my carpet. I just bought it. Like, it's like, it's this, you know? And then you

Mandy 1:02:33
put the lifelong sentence of hard, right? And then you

Scott Benner 1:02:35
form an adversarial relationship with diabetes. Yeah. And and I'm telling you that when my daughter got diabetes, I was just like, yeah, that figures. This was always gonna happen, wasn't it? Like, like, you don't mean like, when I was, you know, 15 years old, and my mom was like, couldn't pay the bills. I didn't go Oh, God, we're gonna die. I'm like, Alright, everyone Sit down. Let's figure this out. I don't know what that is. Maybe I'm just lucky that my life went like this. And then dovetailed into diabetes, because I am, I always say in a very specifically, in specific way, when the zombies come, Mandy, you come get me because we're going to live through it. Because Because I literally, like, just zombies. They're not gonna leave me on my birthday. Are they? Like, you know, like, it's just, I think sometimes it is just your perspective. And that's why I don't talk about perspective so much on here, because I think it's a huge part of it's a huge power. Yeah. And how do you end up handling things because

Mandy 1:03:38
of it? attitude, it's really true, that attitude, attitude can be everything. It really can. And that goes with the fear, too. I mean, for me, I think our fear of making the transition from injections to you know, technology and devices was, wasn't so much about the concern of being overwhelmed by the information or, you know, which like you said, you hear a lot. It was just, we, we get comfortable and familiar are things that are familiar when life when things are hard, anything that at least feels stable, or consistent starts to it starts to make it seem like oh, it's easier this way. But that doesn't mean it's better this way. And that was like a huge shift to be like, well, there could be something better, but I have to not be afraid of learning something new and leaving our little current way of doing things. Because I don't think it's, I just I don't think it's where it's working well enough to keep her. I don't wanna say alive, but you know what I'm saying like it's working well enough to do that. But I don't think it's going to give her her best life or her best chance at this. And so that was the fear I had to go from. Well, I'll tell

Scott Benner 1:04:52
you it's so two things I think to say first of all, I just went on my little rant, but I want to say to people that I get if you maybe you grew up really you know horribly, and this was just the straw that broke the camel's back. Like, I'm not saying that if you're not dealing with it, well, you're somehow you're somehow just doing something wrong, everyone's different. But it's just an over, you know, it's an overarching idea. But just you know, sometimes you're, it's, it is about your perspective. And there are, listen, you could have grown up terribly and then gotten diabetes, and I can see that being overwhelming. But we also, you know, for Americans, at least, you know, there's this expectation, things are going to go well, you're going to grow up, buy a house, get a car, go to college, like you'll get a job, it'll be fine. Some pretty girl talk to you, you'll have babies, like everyone thinks that most of the rest of the planet doesn't think that, you know, like most of the rest of the planet struggles. I saw some video last night of some bombing in Syria, every buildings made out of cinder blocks. Like they all just live in cinderblock squares, you know, and people are dropping bombs on them. So if you gave one of those people diabetes, they probably just be like, Yeah, well, I guess it only like, it just it's it will make it much harder. But it's your it's your expectation of what life means that, that changes, how you accept that stuff when it happens. And so if you can manipulate that inside yourself, your expectation for things, I can't I'm not trying to say like, like, set the bar really low. And you'll never be disappointed. But I have to say that is probably one of my personal mantra. It's like, don't, don't expect too much. And you'll never be let down. And then anything, anything over that is just great. You know? Great. So,

Mandy 1:06:35
yeah, and I don't want to come off. Like I mean, it took me about two years, I would say till when I started to have that shift in my attitude. I mean, the first two years, I felt like this was very unfair. There are things for her she's had other medical challenges and things like that, that have been that consumed too much of her for several years. And so when this happened, I really felt like well, like, you've got to be kidding me. Like This can't be happening to I, I did have the feeling like, well, surely nothing else could come along. And that would be harder than what we've already been through. And then this happened. It's so it, it put me in a tailspin. As far as emotionally, I was a wreck for a while, at least internally. I was definitely probably more wreck than what I showed on the outside, but I just I felt like this was a bad hand that she got down and it wasn't fair. And all of a sudden it's your

Scott Benner 1:07:31
hand too. Yeah, yeah, please. Same thing crying in the shower. Like my wife would come home like, you know, after a late night at work with like food. I'm like, don't break from that house. Like I feel like it's just like, why would you bring food into here and like go just shaking the whole time. First two years really bad for me. More recently, I haven't really talked about it yet too much on the podcast. But Arden had to start taking Synthroid or thyroid and I cried about that. I was like, how could she another thing like how could another thing have happened? But then I went and found a bunch of people who have thyroid issues and diabetes, and they're doing good.

Mandy 1:08:06
So you know, Kayla has celiac on top of it, too. And I've heard a couple of your podcasts where celiac has entered the picture. And that's my pediatrician, I think was she was like, I know you can handle this if anyone can. But I'm still scared to tell you what I'm about to tell you enough. Like

Scott Benner 1:08:21
but I think they also found out recently are lactose intolerant, which we didn't

Unknown Speaker 1:08:25
Oh, good.

Mandy 1:08:26
Yeah, there you go. Yeah. Yay, that put Yeah, the celiac Honestly, I was like, okay, like, you know, at that, okay, we can do this, you know,

Scott Benner 1:08:36
we can do this such a girl like such a good attitude like last literally last night. She's like, I'm gonna have ice cream and I was like, okay, and she I said, you know, you take the lactaid and she's like, Yeah, she was already doing it. She takes it and she starts eating the ice cream and she goes well either this is gonna be okay or I'm gonna have diarrhea and she just said it like so matter of factly I was like, Well good for you. And sorry about all this but but yeah, like really just like, you know, a good soul I guess and and i think that's just something you have to tend to on your own you really do have to keep your that part of you alive or this all can really eat you up pretty quickly.

Mandy 1:09:15
Right? Yeah, since the humors good which if we have time I want to tell you the our involuntary break from the Omni pod.

Unknown Speaker 1:09:23
Well, man

Scott Benner 1:09:24
What happened? We're a little over an hour go ahead and tell them we'll go out on this walk god

Mandy 1:09:28
okay. So we you know, here we've adjusted to having the pump now to since beginning of August and we went on a winter break vacation to go out skiing and I had done you know, some research about you know, cold weather and insulin and you know, just anything that and skiing, you know, all this and I'm thinking but this is good. We've got our pump, we've got her Dexcom You know, we've got this we can do this and because of the holidays and the way her insurance works Long story short is that they did not get the paperwork processed for her next renewal of her pumps in time for us to get the shipment before we left for vacation. And, yeah, so

Unknown Speaker 1:10:12
with pens again, that's great.

Mandy 1:10:14
Yes. Yes. And so I thought to myself, okay, well, we'll do a little pump break, not what I had planned at all. But we can roll with this. And honestly, I thought I was if one of the two devices were going to go, it was the pump because I thought I just can't imagine though what we what it would have been like to not have her Dexcom working and us out there skiing and doing things that you know, her body's not used to doing. So if one of the two had to go the the pump, but she she handled it great. And at first, she was kind of like yay, injections again. I mean, you know, it was almost like a little nostalgic, you know, like, okay, we'll

Unknown Speaker 1:10:49
do Yeah, what

Mandy 1:10:50
do you have again, and it was funny how quickly, you know, it was good for us to realize that we hadn't forgotten all that. It's like riding a bike, you just go back to it. But you quickly realize that this is not our preferred method like purse sugars were very hard to manage. Because on top of it, we had anxiety and excitement and travel and weird sleep routines and skiing, you know, cold weather, all those factors that we're not used to having on a regular basis we had for a week. But we managed and then it was the icing on the cake, though, was with two days left. We knew her transmitter was going to probably expire while we were gone. So we packed her backup transmitter to change out. And sure enough, with two days left in the trip, you know, it happened and so we changed out the transmitter and our phone kept saying it couldn't pair with it and it couldn't find it and to re enter the number and we're going What is going on? Well sure enough, I mean, after multiple attempts and Dexcom being great, they have a great I love that they can call them any time and say we need help. And they really tried to walk us through it and finally it was like Yeah, you got a bad transmitter. I mean we don't know what to tell you and so for the last 48 hours we took that off and she was on a meter and on on on injections for a couple days until we got back to town and then all the new stuff arrived and we got her back up and running but it was not at all my plan you know and but we rolled with it. So

Scott Benner 1:12:20
I if you go back about 20 episodes right now you'll see one where we're at the Adele concert and Arden's PD have just fries

Unknown Speaker 1:12:30
no like

Scott Benner 1:12:30
now really bright this second

Unknown Speaker 1:12:33
Yeah, not at home

Scott Benner 1:12:33
or not you know about about work. You know, listen, we just the timeline will be all messed up. But is he had just had a terrible car accident. Her blood sugar got really low. If you've heard about that in the community. A 17 year old girl coming home from high school crashed her car. They think she may have been going up to 100 miles an hour that man thrown from the car really direly injured. And I remember just talking to her mom on the phone, and I remember thinking like and I said to her, oh my god, it's so random. Had she just been in science class, she would have just passed out.

Unknown Speaker 1:13:05
Like, you know, like,

Scott Benner 1:13:06
yeah, like, yeah, and that freakin PDM could have. I mean, I had it for years. It could have went bad at anytime it really, I left my home drove into a city was in a concert. That's the moment like, you know,

Unknown Speaker 1:13:19
that's how I felt. I'm like, really? Like, anything? Yeah, I

Scott Benner 1:13:22
get these transmitters all the time. They always work the one bed when I get.

Unknown Speaker 1:13:26
I'm skiing. Like Yeah, I hear you. I really do. Well,

Scott Benner 1:13:31
you were really delightful. Thank you so much for coming.

Mandy 1:13:33
Thanks for having me. I hope it's hope it's helpful to somebody like the rest of them for me.

Scott Benner 1:13:39
Thank you very much for listening to Episode 183 of the Juicebox Podcast. I cannot thank you enough for tuning in every week. Please tell a friend about the show if you think they would enjoy it.

Unknown Speaker 1:13:51
That's it.

Scott Benner 1:13:52
Well, I mean, that's it except for to say thank you to dancing for diabetes. Don't forget in November, they're having their big show. On the pod, the tubeless insulin pump that Arden's been using since she was four years old. And of course the dexcom g six continuous glucose monitor links for all of these wonderful things are available in your show notes right there in your podcast app, or of course at Juicebox podcast.com. I hope everyone had a wonderful summer. I hope you guys have a ton of luck sending the kids back to school. There's a whole bunch of 504 information on my blog if you need it at Arden. Stay calm. Otherwise, I am very excited to keep bringing you the show every week. I have a lot planned for the rest of the year. And I can't wait to get going. I need to send my own kid back to school so I can get some stuff accomplished.

Unknown Speaker 1:14:39
I'll see you next week.