Scott Benner 1/26/24 Scott Benner 1/26/24

#1116 Southern Lobster Ears

Melanie's eleven year old son has type 1 diabetes.

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Scott Benner 0:00
Hello friends, and welcome to episode 1116 of the Juicebox Podcast.

Melanie's son Shepard was diagnosed with type one diabetes when he was 11 years old. Today we're going to speak about that and the struggles that Melanie has experienced since the diagnosis. Nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code juice box at checkout. That's juice box at checkout to save 40% at cozy earth.com. If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes, but everybody is welcome type one type two gestational loved ones. It doesn't matter to me. If you're impacted by diabetes, and you're looking for support, comfort or community check out Juicebox Podcast type one diabetes on Facebook

this episode of The Juicebox Podcast is sponsored by ag one drink ag one.com/juice box. head there now to learn more about ag one. It's vegan friendly, gluten free, dairy free, non GMO, no sugar added no artificial sweeteners. And when you make your first order with my link, you're gonna get a G one and a welcome kit that includes a shaker scoop and canister. You're also going to get five free travel packs and a year supply of vitamin D with that first order at drink a G one.com/juice box. This show is sponsored today by the glucagon that my daughter carries G voc hypo Penn. Find out more at G voc glucagon.com. Forward slash juicebox.

Melanie 2:16
My name is Melanie, I have two boys 115 one is 11. And my 11 year old is a type one diabetic. He was diagnosed in May of 2020 when things were super crazy. So we have come this far. And here we are. Was he about eight at that point? Yes. Yes. As a matter of fact, it was three days prior to his eighth birthday.

Scott Benner 2:50
Did he have his birthday in the hospital? No,

Melanie 2:53
we got out. And he spent the night at home. And I remember I woke him up. You know the next morning on his birthday at home. Thank goodness. So that was nice.

Scott Benner 3:04
Yeah. Oh, that is nice. Actually, did you have to consider that at the hospital? Do you have to ask them, hey, get us out of here. It's his birthday, or did it just work out?

Melanie 3:13
You know, I'll be honest with you, when he was diagnosed, it wasn't until several months later that I realized I was probably in such shock that I just I was just doing whatever they said the fact that wherever his he was going to be on his birthday was kind of they were in charge of that. And I didn't I don't remember talking about that at all. I just remember it was going to be what it was going to be. I mean, if you think about that time, it was traumatic anyway, going into the hospital because we were kind of in the thick of COVID. And that it was only me we literally to tag team for my husband and I had to spend the night I think we slept over only two nights. So we had to literally leave him in his hospital room alone. So one of us could go down, you know, to the sign in desk or whatever and trade off the little badge we had to have or whatever. So I was just doing whatever was necessary at the point, you know, no,

Scott Benner 4:17
I understand and even like, now that all makes sense to me, okay. Was it was it a complete surprise or do you have diabetes in your family?

Melanie 4:27
It was a total shock and complete surprise, no diabetes in our family that I know of? No auto immune and now I have some auto immune that had married and but not none of my blood relatives. So yeah, I mean, we literally had no idea and it's kind of funny. Looking back I as impatient as I am sometimes with some of the comments and things people make because They don't understand type one diabetes. I also am super patient because I mean the day he was diagnosed, I remember thinking like, Oh, this is all our fault. We he's been drinking too much Root Beer this week.

Scott Benner 5:16
I found the root beer level that gives you type one diabetes. I'm

Melanie 5:19
you know, so I, I was, you know, I was there I was part of that just blissfully ignorant, not ignorant in a bad way ignorant in the sense of the word right that I just didn't really understand. Oh, at that point, you

Scott Benner 5:34
beat yourself up about it, or were you able to get past it? Well,

Melanie 5:38
it's a good question. I will say, I think the people that took us into the hospital, it was funny. Because before we really realized what was happening, they said, I hope that you are good at math. You know, welcome to type one diabetes, I hope you're good at math. And, you know, also, I hope you understand that people are going to come at you with all sorts of things that they believe are going to be helpful, they're going to be hurtful. People don't understand this. Like, they told me that stuff that was really, that was really helpful to me. But it's still, it's still, it still bothers me sometimes. And I still, I've gotten better, let's just say that I've gotten better. Listen,

Scott Benner 6:22
if you really stop and think the sum total of things that any of us really understand is probably like, around five. I mean, honestly, Mary, if you and I went off on a different direction here. And I said, let's talk about how they clean wastewater for drinking water. Tell me all about that process. You'd say, I don't know, I turned on the faucet and the clean water comes out. How does that how does how does the financial system work? You know, like it just nobody does? Right? Not my way. Exactly. And why would it be you're busy doing the thing you're doing give a limited amount of time. It's, I don't think we think about ourselves that way. That you know, you go to elementary school to learn basics, you go to middle school to get socialized, you go to high school to try to figure out something you're good at, you might go to college to hone in on or go out into the world and get a job or you make a baby or whatever you do. And those are really the things you know about. And then the rest of what you know is from what you hear, like adults in your life, bantering back and forth. And then we all get 25 years old and go, Oh my God, my parents are morons, I've been listening to them. Right that if you're really thoughtful, you have an existential moment where you go, I don't know anything about anything. You spend the rest of your life trying to figure it out. So yeah, anyway, I'm glad you didn't beat yourself up terribly. How long? Do you think the symptoms were going on before you made it to the hospital?

Melanie 7:44
You know, he was complaining with a stomach ache for probably two weeks. And it was COVID. So of course, we were doing do it yourself projects around the house, right? I mean, isn't that but so what happened is, we had kicked him out of his room, we were repainting region, the flooring and his room, all this stuff. So he was sleeping in the guest room. And this was probably like, a couple of days into when he was really complaining about his stomach and I was really noticing. And, and, and just kind of wondering, like, what's going on? Like, understanding finally like, okay, something's not right. Because he doesn't usually complain, you know? Also, I have to say this, this is my child that is the camel of the family, right? Like, he wakes up in the morning. He gets dressed, he brushes his teeth, he eats his breakfast, he does all the things that you do. He gets his things together. He goes out to the bus stop, he gets to school, and then he goes to the restroom. Okay, this is this is he just doesn't go that often. Okay, so I have him in the guest room. And I'm now I'm understanding finally something is not right with Him. And so I sleep with him in the guest room. And I notice he gets up in the middle of the night and goes to the bathroom. And I'm like, okay, that's really strange. So then night to asleep with him in the guest room. He gets up in the middle of the night and goes to the bathroom. And I'm still not really sure what experience it was in my life that I said that minute. Okay, this is diabetes, I gotta call his doctor in the morning. Like, it's still not really understanding what the new about diabetes but just understanding that that was a symptom. And so when I woke up in the morning, I immediately he you know, he's still asleep. I'm googling all the symptoms, and, you know, he's got all of them, but one of them that was unusual is the Freedy breath. And he came downstairs and he sits by me on the couch and I say, you know, Shepherd, give me a Breathe on me and I'm expecting, you know, Kid morning or whatever right and, and it just smelled just like a pack of juicy fruit. I couldn't believe it. It was surreal, you know. And I knew then and I called his pediatrician. We didn't go we didn't couldn't get an appointment. So later in the afternoon, and so, all day long, we're super, especially him. He's super active. So we have gone on a bike ride, and then we came home and we were, you know, at the swimming pool, he was swimming, we were waiting, we had a three o'clock appointment. And, you know, he's being super active. But in the meantime, he's also drinking that root beer. So I think they said his activity level probably really helped him where he was, but we get there and his pediatrician were both my boys pediatrician, I just adore her. And she just looked right at me. And the way she said it was, he's insulin dependent diabetic. That was the word she used. And I still didn't fully understand what that meant. Yeah, say

Scott Benner 10:59
what did that mean to you when the words came out?

Melanie 11:01
Well, I'll be honest, I think the first thing and that's when the shock really started because I had been looking at the symptoms within as I just said, then we were busy all day, I was just like, oh, well, it's gonna be what it's gonna be. We're gonna find out, we're gonna get to the bottom of this, you know? I think I thought, okay, he can't ever have a root beer can you know he can? You can't have sugar anymore, I think is what I thought.

Scott Benner 11:22
I thought I'm gonna save so much money on repair.

Melanie 11:28
Yeah, I believe that's what I thought. And before we

Scott Benner 11:31
move on, Melanie, I have to tell you that I've made a mistake in the first 30 minutes and I want to clear it up. Nobody else knows about it yet, but me, but I'm going to share it with everybody. Because if I have to know this, everyone has to know this. Right? I Googled how often do camels pee based on something you said. And I was, I was faced with this sentence. They are so good at retaining moisture that their urine has the consistency of syrup. And now I'm never gonna be able to get that in my head. So that's your fault. And I needed you to live with it as well. Oh, my

Melanie 12:00
goodness, no, I don't know if I should say that about my child. Or like, what a visual.

Scott Benner 12:07
Camels urinating frequently in their pee is very concentrated. Oh, FYI, their droppings are also very dry. Yeah, well, thank you for that. Let me just click off this. And let's see, oh, my goodness, I got actually like, I felt weird. When I read the sentence. I was like syrup. Oh, my God. No, no. Anyway, now that you've been torched, you've been tortured with that. Now we can all live. Actually, I guess there's a lot of people as they did now, y'all know. So it's my take

Melanie 12:33
me a minute to move on from that.

Scott Benner 12:34
I'm telling you. I got warm. Ma, I have a question. Yes. How old are you? Well, that's not only is that a problem, the answer? The answer,

Melanie 12:49
which is funny. I've had a lot of conversations about this because I'm going to be 49 this year. So I'm getting to a big, you know, milestone. Okay. I'm 48 right now,

Scott Benner 12:58
but you're my age is what I was getting it. Okay. And geographically. Are you more north, south, east, west, northeast southwest?

Melanie 13:08
Um, um, southeast. I'm in Georgia. Okay.

Scott Benner 13:11
So this is like, this is just a question. It's not a indictment. I have a serious question. Because my children now reside in Georgia a lot of the times. I understand that, yep. What happens when you get to a certain point going south, that no one drinks a diet drink anymore? Or a no sugar drink? There's very difficult to find.

Melanie 13:34
You know what, I don't know if I'm the right person to ask that too. Because now I will say this. I grew up in North Alabama, and we did not drink diet drinks. I mean, drank all the cokes and they're all called cokes to no matter what it was. Right? You know how that works? Yeah,

Scott Benner 13:53
like tissue like Kleenex like that idea. Exactly. Exactly. But

Melanie 13:59
I mean, I've in my adult life, and of course now, we only have diet trends. Now restaurants, is that what you're referring to like you go to a restaurant and you get Diet Coke or Coke Zero pretty much or Diet Pepsi side

Scott Benner 14:11
of the road gas stations, convenience stores, they're sweet tea, there's regular soda. Juice, it's hard to find something that doesn't have sugar in it. Like, I mean, I guess once you're in the grocery store, you can accomplish it. But I mean, like out in the light Grab and Go world. It's just very difficult unless I'm stopping at the same places over and over again. But I mean, I guess my bigger question is like, soda. I'm not again, I'm so sorry. I'm not talking to you. I'm really trying to understand, ya know, in my wildest mind, I can't imagine giving somebody soda but the world does it like don't get me wrong. I understand that everybody drinks soda and I'm not trying to come off like some like health nut because that's pretty obvious. I'm not that but but my point is, is that it's just It's such a weird idea. I don't know what happened as I was growing up with the idea of empty calories stuck with me really hard, but I don't think that happens to everybody. Today's episode is sponsored by ag one and I drink ag one every morning. I originally heard about ag one on a different podcast. I had been using other drinks and not enjoying them. So I decided to try each one and loved it. I was using it every day when they approached me and I was like, wait, you want to sponsor my podcast? I heard about this on another podcast. Alright, cool. So here we are. When you use my link, drink, ag one.com/juice box. Your first order will include a welcome kit. That's an ag one shaker scooping canister, the Ag one itself five free travel packs, and a year supply of vitamin D. I drink as you want in the morning before I start my day at one makes me feel like I'm giving my body the nutrients that it needs to get through a hard day of podcasting. I'm just kidding. It's not that hard to podcast but still, I feel great when I drink age one. Ag one is my foundational nutritional supplement. It helps me start my day. It helps me to support my immune system and I think you're going to enjoy it. So if you want to take ownership of your health, it starts with ag one drink ag one and get a free one year supply of vitamin D and five free ag one travel packs with your first purchase. Go to my link drink ag one.com/juice box that's drink ag one.com/juice box check it out. If you take insulin or sulfonylureas you are at risk for your blood sugar going too low. You need a safety net when it matters most. Be ready with G voc hypo pen. My daughter carries G voc hypo pen everywhere she goes because it's a ready to use rescue pen for treating very low blood sugar and people with diabetes ages two and above that I trust low blood sugar emergencies can happen unexpectedly and they demand quick action. Luckily G voc hypo pen can be administered in two simple steps even by yourself and certain situations. Show those around you where you storage evoke hypo pen and how to use it. They need to know how to use Chivo Capo pen before an emergency situation happens. Learn more about why G voc hypo pen is in Ardens diabetes toolkit at G voc glucagon.com/juicebox. G voc shouldn't be used if you have a tumor in the gland on the top of your kidneys called a pheochromocytoma. Or if you have a tumor in your pancreas called an insulinoma visit G voc glucagon.com/risk For safety information.

Melanie 17:47
I will say I know where you're hitting this if you're not out of bounds or like crazy, like I will say I grew up around a lot of that, you know, but once I guess to me, that was a Northern Alabama thing once I kind of moved away and grew up whatever. I also same thing like don't Why would you drink? You're at the time I thought it was calories. Now of course I think of it as carbs. Right? But you know, why would you drink your calories save those to eat?

Scott Benner 18:23
Like, listen, it goes without saying you would make a massive change in your life. If you just stopped drinking soda. Like it would just be such a massive change for your health. And I don't know that people know that people carrying extra weight, you'd probably lose 10 pounds in two weeks. Automatic Yeah, it's just like that kind of stuff. And right anyway, so like you're a lovely lady, and you're very thoughtful and everything and you're like my kid drinks root beer and root beer and root beer. And that always threw me off like

Melanie 18:52
so no, it's a joke. It's a joke we have actually because in the summer, especially, we have a boat, we have a swimming pool. So we're you know, always outside by the pool. You know, we always have a cooler packed or whatever. And for the most part, to be honest, we drink water. My son has always liked beverages like that. So when we're at the pool or on the boat or something a root beer is like that would have been a treat. And that is just a funny joke that we have. When I look back at his diagnosis story. I'm doing air quotes. Because my husband had just bought him root beer. It was not something that we usually kept around. Okay. And so the fact that he had had that was literally Wow, that was my first thing. Oh my goodness, we've been drinking root beer all week.

Scott Benner 19:42
Like this thing that he doesn't Oh, I see. Gotcha. Yeah. So

Melanie 19:45
like it wasn't really a normal thing. It was kind of a treat. And I mean, it was just literally he had had one like, right before we went to the doctor right

Scott Benner 19:57
now, by the way now it's hilarious.

Melanie 20:02
So just so you understand now, I mean, now I've outed myself. I grew up drinking that sort of stuff. But I didn't raise my kids with that. And it's so funny too, because I also had that whole thing of, and I don't know if this is just my age of mom world or what it is, I don't know, I don't have littles anymore. But I also grew up with that idea of like, don't, don't give them juice, right. Like, have them eat the fruit don't drink the fruit, right, like, Yeah, and so now we got juice boxes in every corner of the house, right? I used to never give them juice. So

Scott Benner 20:32
I hear that so often from people like we never drank juice, but now it's everywhere. And yes, yeah, yeah, I know. I watch art and drink a juice box when she has to. And it. It's like she's taking. It's like she's taking a supplement or a pill that she doesn't want to take. But she just but she knows it works. And so she does it. But I would imagine that if diabetes disappeared tomorrow, you would never see Arden drink juice again her entire life. Yeah, so

Melanie 21:03
well, and the funny thing about it is though, I mean, like, I do think he gets sick of it. Right? I mean, especially those middle of the night ones are whatever. But Shepherd loves my type one diabetic, his name is shepherd, and he loves sweet things and sweet drinks. And I don't know, if I had given him juice as a child, he probably would have loved it. But the funny thing like talking about all this along that line, it's another memory for me. Actually, when I was pregnant, you know, you have to do those glucose tests. And, you know, I'm drinking the drink, and I'm drinking it. And it's just awful. I mean, it's just terrible. And I think you have to drink it and like, they like time yourself. I don't remember. It's been a long time. Yeah. I remember looking at the nurse and like, gosh, that drink. It's just so terrible. Is that the flavor I chose or it's just has such this distinct flavor. I can't put my I can't put my finger on it. She was like It's sugar. It's like, oh, oh, yeah, I'm not. I'm not used to drinking that.

Scott Benner 22:05
Sugar. I'm gonna shut me off. I mentioned it on a recent podcast. I was somewhere where they had what they call Mexican coke. So made with real cane sugar. Still, I guess that's still How It's Made in Mexico. And I was like, I'm gonna try this. And I could, I couldn't choke it down. And I'm just like, there's so much so much sugar. And this is what it felt like to me. Hey, before we move on, there's a famous artist named Shephard. Shepard Fairey very. I'm not sure how he says his last name FA Irey. But he has type one diabetes, too. It's not a thing that he like. I hear Him say out loud very often, but he definitely has type one.

Melanie 22:43
Last name again. Of course. I have to look him up now. I mean, F A

Scott Benner 22:46
IREYU. Wow. Okay. Anyway, cool.

Melanie 22:55
Yeah, yeah. Yeah, I always like to share things like that. With Shepard. It's nice to have just two examples, you know, just move on to succeed. Do your thing.

Scott Benner 23:07
You I, you're always like, you're always trying to model like positivity and success to your kids anyway. But I take your point, like, I've done it. I've been like art and stop. Look, this is the Olympics. See that man skiing across the screen? That's Chris Freeman. He's been on my podcast. He has type one diabetes. He's in the Olympics. Like and then. And then she goes, Yeah, I mean, okay. And then she one time she was interested by something like that, but I still did it like Chris Rutan was on like, something called, like, I don't know, one of those gladiator TV shows. And I was like, watch this. And like, That guy's got type one, you know. So definitely,

Melanie 23:41
I need to find like, a professional like a bass fit my my type one shepherd. He loves fishing. I mean, that's his. That's his goal. That's his sport, mass fishing. He loves it. So I need to Google that. Now that we're talking about that. Yeah,

Scott Benner 23:57
there was somebody on Oh, now I get confused as to whether or not this is something I've recorded or something you've heard. But somebody was on recently, whose husband was like, like, I started to make, I started a mocker. I shouldn't have, but he like he fished in college. And I was like, wait, you fished in college, like people play baseball in college like that same idea. But he doesn't. It's a professional sport, which I was completely unaware of.

Melanie 24:24
And anyway, well, and I have to learn more about it. I mean, now, you know, this is just a blossoming thing. We tried the soccer. We tried the swimming, he likes swimming. You know, he's, he's tried a lot of sports. Like I said, he's really active anyway, but we live on like a little fishing lake. And he just would rather be fishing than anything. And it finally was like, just I just had to like, knock myself over the head and be like, this is his sport. This is his thing. Like just let him go fish. He's out and he's being active. He's, he loves it. This. This is the thing he's passionate about. And so I got to learn more about it. I think locally here. or you can't really get into it like on a team or anything until your middle school, but I think some of the high schools around might even have bass fishing team. So I got to figure it all out. It's a

Scott Benner 25:09
thing I didn't know about that, obviously. So, okay, so you leave the hospital, so only three years ago, it's during COVID. They give you a pen that they talk to you about glucose monitors, like, What's the sum total of what you understand that you're trying to accomplish? We

Melanie 25:24
get a pin. And that we get told that we will not be receiving Dex comms pumps or anything like that for at least a year. Right? It's this mentality that I hear people talking about, oh, well, you have to learn how to do it the manual way, you have to really learn the math, you have to really understand it. So I'm accepting this at this point, we're still in the hospital. Right? And you have to keep in mind too, I'm here going to the classes as as we do, they take the teachers, you know, the survival skills, basically. And my husband can't come. So I'm having to learn it for for both of us. And his only choice is to just read the manual, basically. Yeah. So that was really stressful. I learned the basics, and went home, just really was trying to depend a lot on free snacks. And, you know, how am I going to survive this, trying to teach my husband everything that I kind of, you'd have sometimes you just pick up things in the classroom that you can't get from the book or whatever. We're trying to learn all this together. Finally, I think it might have been like, two months later, wasn't too long. I finally broke into I was like, we're getting a Dexcom like this is this is crazy. Yeah, I remember now it was like right around, because he was diagnosed in May. And it was like the end of June, we get the Dexcom. So that was great. And that just changes the way you treat, honestly. I mean, it's hard to be really aggressive, in my opinion, or bold, let's call it bold and bright. It's hard to be bold. When your finger pricking all the time because you're not, you know, you got an eight year old kid, they're not wanting to fingerprick all the time. So we start this new management strategy. I learned a ton of that, from listening to your podcast, thank you so much for everything that you do. I it just, it changed everything for me. I mean, it really turned on a light bulb and made me you know, go back to that conversation where we were talking about the birthday and the hospital and all that. And I was like, whatever it takes guide me Tell me, I don't know, this is this whole new world I don't understand. Well, then I started listening to your podcast. And it makes me realize like, yeah, there was a whole new world that those guys didn't even understand. Right. So now I'm gonna go up to like this. Maybe they understood it, but they certainly weren't putting it on me at that point. Let's just say that, right? You know, I go up to this next level of this, this treatment. And I'm being a little more bold and doing things like splitting boluses for, you know, Paddy, or high protein meals and things. And then I realized I really needed a pump. So we started pushing for that. So then by October, we get the dash, he starts the Omnipod Dash. And I'll never forget, we had traveled to Savannah for a soccer tournament. We're big talker, his older brothers, huge soccer player. So anyway, but we were there for shepherd for a soccer tournament. That was when he still played and we got some really crazy lows at the time, because, you know, we still didn't understand activity in the pump and, you know, lower and do in lower Temp Basal and stuff like that. So we just learned just by jumping right into it, you know, there's

Scott Benner 28:38
no better way than it's, it's upsetting in the moment. And I understand why people might not want to do that. But having the experiences so that you can see them happen is basically the best way to figure it out. Yes, yeah. It

Melanie 28:53
really is. It's It was scary. At some time, you know, but yeah, you learn so much like, I'll never forget dosing him for a milkshake. You know, and you get these milkshakes at these places. And they're, like, 100 carbs or something just crazy scary, and I just boomed us at all at front. It's like, eight o'clock at night. I'm just, I'm like such a little type one baby at this point, right? I have no idea what I'm doing, you know, when he drinks it down, but of course, it's hitting real slow, right. And so he's going I'll just hit night. That night was terrifying. And I learned a lot. I mean, I realize, yeah, I immediately was like, wow, this is what I could have done a lot differently. You know? So yeah, yeah. Just jumping right in. That's

Scott Benner 29:45
the moment right where you think like, well, there's the number, and it's really impressive. Melanie, you made the first leap. You were like, well, this is way more insulin than we usually use. But if that's what the number says, then that's what the number says. And and you Did that which is laudable because most people are like, add nama to that. And then they end up getting very high and that fear stays with them. So you, you know, you caused yourself a problem, and then you figured out how to fix it. So you learned how to Bolus for the milkshake. And you learned how to deal with probably, I would say a stubborn low that probably lasted hours, right?

Melanie 30:19
Yeah, I don't know if I even knew what that was really, at the time, right, like, but now

Scott Benner 30:25
looking back, you see, like, oh, there's too much insulin in there, it was holding low. So when we were, we were trying to bring the blood sugar up, we couldn't because we were just really, half, you know, feeding the insulin that was already in there that didn't have anything to do. But I mean, like, all of that stuff is so valuable. Because it's hard for somebody just to explain it to you. You know, when you're when you're diagnosed, like no one's going to explain that to you. No one

Melanie 30:48
No, it's just it's too much they, and they know, that's what I was like, in the hospital. I felt like they just don't put that all on you. Because how can you and it was just it all it was for us was sheer terror. I mean, I remember Shepard, just like, literally, he was like, our oldest son had already gone to bed and he got in late. By the time this really started turning disastrous, right. And he, he looked at me and my husband and just was like, can you get jack in here too? I mean, you know, they say one of the symptoms of like, a really low low is like this feeling of like, just dread. And I mean, you could just see it, he was just like, oh, no, like, this is awful. I've got it. I need my brother in here to like, we all have to be here together right now. And it was really sad and, and terrifying. But I mean, we learned, we learned a lot. You know,

Scott Benner 31:35
I watched art and deal with a low blood sugar the other day, so she's home from college now for probably coming up on two months. And now the quality of food, no disrespect to Georgia, but the quality of food is better. And as far as nutrition goes and cooking methods, you don't have to fry everything Georgia, there's, that's I'm just gonna say it. And, and so her insulin needs have gone down fairly significantly. I've stabilized or a one C and her variabilities. And she's like we made I made some changes to her settings. But she's still like, once in a while. They went out to lunch, my what day. Those people, my wife and my wife and my daughter went out for lunch. And Arden was aggressive. Like she was at school. Yeah. And about two hours later, maybe two and a half hours later. She's like, I'm getting low. And I was like, yeah, she was Yeah, I don't know why. And then she went back and looked at everything she did. She's like, I did everything the way I would have. And I was like, Yeah, I think maybe the food's just different here. And so you know, it can be you can find it. I'm sure I could find the same food in Georgia. But it seems that every time I go there, somebody's giving me a Ben Yeah, and putting nine pounds of like powdered sugar on top of it to the point where I can't even see the bank. I'm like, where is it under there? You know, and, and, you know, that kind of stuff. So anyway, so I watched your handle the low. And it was, it was protracted. It took a while for to fix it. And yeah, there's that like, far away? Look, you don't I mean, the numbers, okay, but they're not okay yet. And I did not get involved. Like, I just like, I watched her she was doing it. And I thought, but she handled this when she was at school, she can do this here to just left her alone.

Melanie 33:22
I try. I try not to go there. Because I'm just naturally a very anxious person, which has made this whole thing very difficult. But I try not to think about him going away and doing it on his own. But I also think like, there has got to come a time in his life where I don't, because I do that. I'll watch him. Like you were saying they have a look, I'll be better than me. I'm like, are you okay? You're coming up? Are you feeling better? You know, like, what do you need more? Like, do we need to prick your finger? What's this timing? And I think, Gosh, this is this has to be so annoying to him. For me it just be after him on this, you know, but it's kind of a real thing. Sometimes, especially, you know, when you throw activity in. For us, summer is so hard because we are so active. We have company at our house all the time. And, you know, it's like a vacation. You know, you're just you're you're not eating right, you're you're doing different activity, you're going to bed at different times, right? Like everything's just kind of wild. And that's, to me, that's just makes diabetes a little harder, right? It's a little more of a challenge. I mean, even your pump settings and stuff are timed. You know, so yeah,

Scott Benner 34:34
right. Yeah. And then you start leaving that back clock is set up for you. You don't really think about it that way. But it is it's set up to match what normally quote unquote, happens to you. And then you move normally three hours later when your Basal is 20% lower, because you're usually sleeping and problems. So and then people then people like me say things to you like well, there's a lot of variables and you Yeah, thanks If I did notice,

Melanie 35:03
well, and it's funny, because I don't know why I'm the way I am. Okay. We

Scott Benner 35:09
wait, Melanie, what does that mean? Go deeper on that.

Melanie 35:13
Let's go. Let's go. I guess what I was about to say is things like, like if he sleeps later, because our ratio changes for breakfast, he has a lower ratio or higher. Anyway, the number is lower. He's one to seven for breakfast right now. And then he pops over to one to nine, at like, I think it's like, was 10 o'clock when we were in school. And then when we got into summer, eventually changed it on his pump to 11. But I can't tell you how many weeks I went of like, oh, no, let me just figure this out and manually override the pump for the right, right? I just for I hear all of you guys, I'm wish that my mind works that way better, where I could set up like these different, like, or change the settings? I just would almost because I guess I just feel like, Oh, it's just gonna change back in a minute. Anyway, I'm just gonna work through this, you know.

Scott Benner 36:05
So first of all, this is such a common problem, right? You get your setting set. And then you think, well, that's done. And you don't think about that anymore. So now all of a sudden, I don't know, like, you know, you're not getting the same result at a meal that you're used to be terrific at. And instead of just thinking, Oh, I might not be using the correct amount of insulin because maybe the kids put on three pounds or grown an inch or something like that, or it's been very sedentary this week. And usually he's very active. And like all that stuff. Like yeah, it's it's hard to keep that in mind in the moment. Also, I want to just kind of throw this in here because you said something. When when you're talking about your settings, or you said you were like higher or lower, I don't know, which is at higher or lower it. It helps me immensely to talk about it as weaker and stronger. Yes, that those words helped me a lot when you're thinking about carb ratios. correction factors. Basal insulin, I'm making my Basal Yeah, I'm making it stronger. I'm making it weaker that so

Melanie 37:02
yeah, so like his breakfast is stronger, right? Yes, yeah. Agreed,

Scott Benner 37:08
right? No, it's just so much easier. More aggressive, less aggressive, whatever the word is work for you. Yes, but yeah, higher and lower is meaningless.

Melanie 37:17
Yeah. To me, it doesn't fit right. To me. Yeah. Well,

Scott Benner 37:21
yeah. Especially because when you like using your insulin to carb ratio for an example, if your insulin to carb ratio was 100, and then you make it, I don't know, 90. There's a, you lowered your carb ratio, which makes it feel like because of the words being used, that you've somehow made less than two, right? But you've made it stronger, because now one unit, instead of covering 100 carbs now covers only 90 carbs. Exactly.

Melanie 37:51
So you understand why I get confused. It's like opposite Kinda,

Scott Benner 37:55
yeah. That's why the words help there. So anyway, thank you. Thank you weaker and stronger, aggressive, less aggressive, whatever you want, no matter what. Alright, Molly, so things are rocking along, you're figuring things out, got them out, you're being active. You're not scared, which is pretty crazy. Why aren't you scared? Oh, I'm

Melanie 38:15
scared.

Scott Benner 38:15
But why aren't you buying this fear stopping you? From playing soccer from trying things from bolusing for a milk show? Well,

Melanie 38:22
first of all, I had decided early on as far as activity and the things they were going to do this was not going to change our life. It's not I mean, period. Can we be as as free and spontaneous as we were before, unfortunately, now, and that hurt me? I mean, that hurt me like to the core, that part of it. I mean, I definitely went to therapy, let's just say that I grieved that loss. But I was like that is for because he was so young. Let's say that. That was for me my burden to bear. I was going to figure out how he would never really realize right, like, I'm like, he's young enough that he is going to this is going to be His way of life. Right? You know, he might remember before diabetes some. But if we do this, right, and we and we start off on the right foot, and we're doing this from a health conscious standpoint of like, this is what you do to be healthy, then I'm going to figure out what the this is. We're going to learn to do it. And you're going to just keep doing your thing. And that's I don't know that's just how I decided I

Scott Benner 39:37
was going to deal with was that you being stubborn at first like this isn't going to change anything or was that you being hopeful? You know,

Melanie 39:43
I think it was probably hopeful. Okay, because down deep there I believe there was a voice telling me that everything was changed. Oh, okay, if that makes sense. Like I mean, I struggled with This I mean, like I said, I think I was in shock at first. And it was weird. I felt, I felt very unsupported. when this first happened and very misunderstood when he was diagnosed, are the best words I could use. And it was not for lack of a wonderful community of friends, family and all that none of that they were all awesome. I just I think I felt isolated because, and I think most of the people who are listening to this will understand it is sort of misunderstood. And it's a lot of ways of learning this new way of life that you realize nobody else has to deal with. You know, it just it felt very isolating to me, but I wanted everything to stay the same. So hard, you know, like, I was working so hard to make everything stay the same. I don't even remember what the point of this was because I started getting a little emotional. Yeah,

Scott Benner 40:57
I hear you, you're fine. So you just were fighting something that felt like it couldn't be fought, but you were gonna fight it anyway. Yeah, try to will it back into where you wanted it to be? Right, like,

Melanie 41:10
I was gonna man handle this diabetes, right to be to fit us. We weren't going to conform to it. I mean, obviously, we got to have the insulin, right. So like, we do that. And we, anyway, I just, I wanted it to be good. And I want him to be healthy. You

Scott Benner 41:28
You went to therapy for that? Yes. Yeah. What did they help you with?

Melanie 41:33
I think in any therapy situation, this is just my opinion, of course, I think just talking about it was what I really needed. Because to take it a step further, you know, talking about it to my friends, was something that I did at first, a little. But I got to the point that I felt like this broken, sad record, right over and over with the same things that I also I didn't like, I felt like, I didn't want to tell anybody about it, because I felt like nobody was really understanding. So anyway, that therapy, I think just helped me to have somebody to just unload just week after week of all the things that I hate about this, right that I I just generally am a positive person. And I felt like it. It just turned me into this. Like I only had negative things to say, yeah. And I didn't like that direction. And so it socially, I am a very social and outgoing person socially. I was starting to retreat. And then it was kind of compounding things, right? Like, then I really I wasn't talking to anybody. My husband understood and I can talk to him. I don't want to gloss over that we had each other of course, but it just wasn't the same. I don't know. So that therapy, that's I think that's how it helped me because I just went and just complained, complained and complained and got it all out. You know,

Scott Benner 43:10
I'm gonna sound like I have a rawhide wallet, that I made myself with a peace sign on it. But it's all mindset. Yeah, everything's mindset. Like like the idea, the idea that you're going to manhandle diabetes, like, I love that, like the feeling like I've got this, I'll knock it over, I'll run through it, whatever, you know, blah, blah, blah. But then once you realize you can't physically change the nature of not making your own insulin, you know, like, yeah, then you recognize there is still a completely normal life. And it's up to you not to fight against that in your mind. Right? That really is what ends up being like, I've talked to so many people who have issues that they're trying to get past, a lovely woman just last week on the podcast, who's blind, someone who's in you know, a wheelchair, then, you know, like, all these everything in between. People have had like cancer over and over again, or have lost children to horrible accidents or like, by the way, I didn't think any of this was going to happen when I started making a podcast. But now I've had all these experiences talking to these people. And I'll tell you, the ones that do well, are the ones that don't fight the reality. Yeah, that's it. They don't fight the reality. They say this is it. And so I'm gonna live very well here where I am. And that's, I don't know, it just it seems like it's mindset to me. And that's where if you're not careful, and you're just talking too quickly, or being flippant, you would say something like, I mean, there's a phrase I use in my personal life that I don't think I use in the podcast very often, but sometimes I look at people and I say, Oh, they want to be upset. Uh huh. Yeah, yeah. And it's not that they want to be upset. It's that it's their inclination to get sucked into that void. And so they kind of they almost like throw They're hands up and they, and they become a part of it. They're just like, I'm gonna dive in and be miserable along with this miserable situation. I could we could all do that everyone listening could just say, I have type one diabetes, my kid has it. They can't XYZ or these things are harder because of this. I'm always worried. This is the possibility insulin could kill me like you can you can run through all those things and make yourself go Oh, yeah. Wow, this is terrible. Right, right. Or you could look up and see Chris Freeman skating along and the other skiing along in the Olympics. They go that guy's got like, what appears to be 3% body fat? He looks like a for sure. Yeah, yeah. Like, apparently, this is all doable? Well,

Melanie 45:39
and I think that what you're describing is what was almost the worst thing was that what was happening to me, because I've always had that Sunny, I mean, are just that sort of outlook of like, you can just decide, you know, you just decide to wake up happy, decide you're gonna have a good day. Like, it's how you react to situations and blah, blah, blah, and all the things right about mindset, okay. But I was just falling into this D. Like I said, he was like, weird, it was like, one thing would lead to another, like, I wasn't even doing it on purpose. Like, like I was saying, like withdrawing from my friends or, you know, stopping talking about it, or whatever, it just, it just kind of started happening. And one thing led to another and I was like, this is getting dark. Like, I've got to get out of this like this. And, and so, all that to say, then I was having these really negative feelings about myself, almost judging myself, right? Like of like, God, how are you letting yourself get this way? Like, you know, get over it, let's move on, let's do this. But there was a part of me that just couldn't move on the way I have been accustomed to do with other challenges in my life, you know, you're

Scott Benner 46:52
stuck like something and not you consciously but something in you wants to be in that space. That's right, right. And maybe it's, maybe it's sadness, maybe it's depression, maybe it's just that feeling of loss, that it's hard to get past. But the truth is, this is terrible. Like, I'm just gonna, like preface this by saying unless you have some sort of mental illness, that is that is stopping you, everyone else, there is a conscious decision to be made. And so at some point, you have to say, I am no longer going to respond to these influences the way I am, I'm going to respond to them differently. And trust me, I know better than anybody. Because, I mean, there I was, I was a stay at home dad, my two year old daughter had type one diabetes, we're in the hospital, everything's going crazy. And all I can think is, oh, we're gonna go home, my wife's gonna go back to work. Like, this is going to be on me. And you know, if you listen to podcast long enough, you know, my brain, my wife puts it in my brain works backwards from now, whenever I hear I think, no first, and then I find a way to it. And like, whereas you might have been like, we can do it. I'm like, this isn't gonna work. And then, and then I try to find reasons why I'm wrong about that. It's just my thought process. But somehow on the other side of it, I am an eternally hopeful person. Like I wake up every morning, like yesterday did not happen. So yeah, I started fresh, right? I think that I mean, my mom's passing has helped me with this and watching her life, like completely unfold and and finish that, you know, it's a t shirt at this. It's a t shirt slogan, but life is today. Like, what happened yesterday is gone, and it doesn't exist. And you have no idea what's going to happen tomorrow. Like, this is life right here. So are you gonna sit around and bemoan it? Or are you going to live it? And I think that's the decision really. Right.

Melanie 48:51
Well, and you mentioned your mom, I think that was a piece of it. For me. I think it brought back a lot of grief. My mom passed away. 12 years ago, she was a nurse. And you know, when stuff like this happen, I mean, even my friends growing up, you know, they always call my mom Hey, advice, this or that, or whatever. And for me, it would have been great just as to have my mom, you know,

Scott Benner 49:13
also, yeah, sure. Now, this is happening. It's one sort of a loss. It's a loss of when your son's diagnosed, it's the loss of what you think life is going to be or almost what it was supposed to be, right. Yeah, yeah, that's right. And then and then there's like, some, like, little bit of your brain that it's like, here, this would be a great time to screw with Melanie. Remember, your mom died? Like, why?

Melanie 49:35
Exactly. Wouldn't it be nice if you had her here now? Huh? Yeah, well, too bad little girl. She's gone. Yeah, kind of like

Scott Benner 49:41
now you're eight years old and you just skinned your knee and nobody's coming to help you. Yeah, except somebody gave you a baby and it has the skin needs to now you're laying on the ground with your dad. You're like, oh, I don't know what to do. And it's

Melanie 49:52
funny you were saying this was a this was another diagnosis store like thing for me. You know you're in the hospital. They come in at two am they pick his finger? They give him a juice. You know, I kind of rouse a little I'm like, oh, yeah, you know, when you're in the hospital, they do the rounds, they come check on me, right everybody, I'm not thinking diabetes at all. Because I know nothing, you know? And, you know, I go to class the next day, and they're like, yeah, and you're gonna want to set your alarm and you're going to check his blood sugar every, you know, night at, like, around 2am. And I'm like, oh, oh, like, that was on purpose. Like, I have to do that now every night.

Scott Benner 50:30
Like I normally sleep at that time.

Melanie 50:35
Be true. Are you joking?

Scott Benner 50:37
To tell the diabetes to just like, you know, calm down overnight, or something? Or could it take a break? Doesn't it sleep? I know. That's that realization. Yeah. And then and then you do the thing. You do that, like everybody talks? Like, it's always the parents, right? They're like, well, I just won't sleep anymore. And then they actually try. I tried it for years. Like, I just want sleep. Yeah, it didn't work out. Well.

Melanie 51:02
I mean, the thinking just goes downhill with no sleep, right? Like, the days become a little less productive. So I will say this Omni pod five, we started it in May of last year, what's this year, so May of 2022? Like, I mean, literally, they were just rolling it out. I feel like I told my endocrinologist that it was released, right? Like it was, it was amazing. We jumped right on board. I was so excited for it. In the first round, you know, we all just got new PDFs and had to like, reset, reset everything or whatever. But the first round, I'll just never forget. It was literally first pod, no learning No, nothing. Boom, we sleep all night, for like three nights in a row. And it's like, you know, those first nights of sleep you get after a newborn, I was like a new person, you know, getting all this wonderful rest. Oh, great hours, you know, you

Scott Benner 51:52
just I'll tell you, I say it as much as I can. Sleep is one of those things that drains away very slowly. You don't see it coming. You're a different person, you can't react the same your emotions are different. It throws your hormones off, it throws off everything about you. And you turn into a different person and don't realize it.

Melanie 52:14
Yeah, so true. I mean, hence the therapy. Like that was literally like, that's one of the things my therapist was like, I think you're having an identity crisis. Like, I don't think you know who you are anymore with this new situation. And I'm sure I mean, yeah. Okay. Yeah, I was like, that sounds right. Let's talk more about that. You know, because probably what you just said, The all of those things combined are just it's just not a great recipe some days, right? Like,

Scott Benner 52:40
you don't recognize that the person you are today, like take diabetes have an extra second, whoever you are, you're the Melanie you are. It is a slow transformation from that person who was born that went off to school, like you build slowly into a person. And then suddenly, someone rushes up to you and says, So many things are going to change, that you're not going to even see them happening. And you can't take time to assimilate. You can't take time to learn. You can't grieve there's nothing to do because if you don't do it right now, Sea Shepherd over there, he's gonna die. And you go, Oh, okay, so you're in a fight or flight mode? 24/7 constantly, and then two days into it. Somebody goes by the way, that'll be while you're supposed to be sleeping too. Yeah, yeah. So so yeah. Even in a war movie. They'll say, I'll take first watch you sleep like no. Like, they

Melanie 53:35
recognize that you can't I mean, the way there's like sleep deprivation training and right, like, it's

Scott Benner 53:40
makes people crazy thing, by the way. Yeah, you should look into what they do to Navy SEALs to train them in that in that buds progress. Yeah, they don't let them sleep for ever. And it's very few people that can can like still function in that situation? Right. Yeah. And it's certainly not Yeah, it's not me and Melanie, that's for sure. Oh, count us

Melanie 54:02
out. Yeah.

Scott Benner 54:05
Yeah, who's gonna row the boat? Not me.

Melanie 54:07
Well, and I feel, I think to again, identity, we're talking about identity and me, I am out could just go ahead and say it it because I feel like I try to find the strength in it. A lot of people look at it negatively or whatever. But I'm a little bit of a control freak. I mean, I like to have a little bit of a handle on things. Okay. And, number one, diabetes, I learned pretty quickly. Go ahead and just let that go. Because sometimes you're just going to have to react, you're not always going to be able to be ahead of things, right. The whole control thing was really hard. And then you go to school, then you go to school, okay. And then the nurses and the county nurses and the people all around are just like yeah, no, that's not no we can't we're not doing it the way you said because it's policy. Ah, I mean, that was a struggle for me. And I just am so grateful for all the ideas and things that are shared on our Facebook group in your podcast and all that, because that helped me get to where we are texting diabetes. Now, not

Scott Benner 55:15
only do you know you, you call it our Facebook group, and that almost made me cry for some reason. Oh my god, I'm so, so grateful you think about it that way? Well,

Melanie 55:26
I mean, it's always like the first thing on my feed. And I always get sucked into reading. I think even just reading what people are saying and reading the comments and things that people share it I've learned so much, of course, from the podcast as well. I mean, I remember especially the early days, just listening to the pro tips and all that, like, how how much I learned, but I do feel like it's ours.

Scott Benner 55:53
Filled up. I thought she thinks of it like it's ours. That's so wonderful. Yeah, like I I actually felt like, I accomplished something when you said that.

Melanie 56:01
Yeah, well, you have, I mean, put me sure in that, be sure that I don't get the

Scott Benner 56:06
feel that way, not only because I'm not a, I'm not mentally ill. So I don't spend a lot of time sitting around telling myself all the good things I've done. Because I think

Melanie 56:14
I'm proud of you. I just want to say that I'm proud of you, and for all the work that you've done, and you should be too because, you know, it's just a community and what I would find myself talking to like the school board, saying, like, look, there's a whole community of us that this is the way we do it. And it's right, because that's because each person, you have to understand each person that lives with this disease has to treat themselves individually, personally, and what they find is right, your policy doesn't dictate that right now. We're gonna have to learn to get along.

Scott Benner 56:47
What was that noise? Do you have a phone from 1984 in your house?

Melanie 56:51
No. I had the old fashioned ring on my.

Scott Benner 56:54
Okay. It's like, well, I'm at my grandmother's house. And it's 1978 I just heard that noise. I was like, exactly how it made me feel like I could I could picture where the phone hung on her wall with a 900 foot cord on it so she could walk around her entire house on the phone. Yeah. Oh my gosh, the way we live back then for sure. But I just listened. I just pulled up Arden's CGM while you were talking. And it was her birthday, two days ago. So we've been we've been to a couple of restaurants. And I'm looking at her last 24 hours. And she's been over 123 times. And under 70 ones in the last 24 hours. That's incredible. Yeah. And I look at the last six hours. It's astonishing, like she's, you know, was asleep. And in that time, I'll even go back 12 hours to like, I don't know, midnight. She had a rise that, I don't know, five or five in the morning. And the algorithm got ahead of it. I mean, this is loop, but it stopped her at like 120. She sat at 120 for an hour and a half. And then it just brought her right back down again. She's 86 Right now thinks she hasn't. She hasn't eaten yet today. She's been in the mid 80s for four and a half hours though. Like so. Yeah, there is a way other people do this. And yeah, yeah, please stop fighting me about it really would be.

Melanie 58:15
Right. Right. Like we have. I literally use your analogy in a Zoom meeting. You know, it was like our 504 meeting, and it was a zoom. I'm pretty sure it was your analogy about imagine Hi. You know, like a high blood sugar is picture what a piece of sugar looks like, how it's pointy, and you know, whatever. And it runs through your veins was that

Scott Benner 58:38
you said that? Yeah. So. So I literally looked at

Melanie 58:43
the people and I was like when Shepard is hot, because that was the problem. They wouldn't correct him. I mean, he would be at school, like over 300 all the time. I was losing my mind. Okay, like, yeah. And I was like, what does it mean to you when he has a high blood sugar? And they all just looked at me like, you know, I had lobsters coming out of my ears because they probably had never really thought about before. I mean, I wouldn't have either Okay, no, no worries people I get it but um, so I did that whole analogy it to me it means that there's like sugar inside his veins just like scraping away at his veins and it's not good. And I want to make that, that go away as soon as possible every single time. No exceptions. And you're gonna have to work with me on that. We got to work this out.

Scott Benner 59:25
Yeah, all of us here are dying at a certain rate. You my son is not dying faster because of this. Yeah, there's damage being done to his body. And I mean, there's damage being done to all of our bodies. That's part of being alive, but you need to speed it up. And by the way, there's a strong possibility I call this episode southern ear lobster. And I don't know why. But I think it would make people go What in the hell is that? And they'll have to wait a whole hour to hear it.

Melanie 59:54
So whatever it takes, yeah.

Scott Benner 59:57
Good. Yeah. I mean, I those were words. No one's ever said to me in my life. They look never heard from

Melanie 1:00:03
the Christmas story. He looked at me like I had lobsters coming out of my ears. Is that the Maybe it's from the Christmas maybe a Christmas? Is

Scott Benner 1:00:09
that the? Is that the pellet gun Christmas movie? Oh yeah, you'll shoot your eye out. Right. So I'm gonna say something that's probably gonna shock some people and piss off some other people. I've never seen that movie. So. Oh, no. Okay. Okay, that's okay. Okay. I came to movies. A little later in my life. I love I love going to the movies, but I came to it a little later. I don't want to like bum you out. But I was really broke when I grew up. Like we didn't like pay to do things. You know, go to things like I've never seen Animal House. I don't think I've seen that either. Yeah, but other movies that like, are

Melanie 1:00:50
like just Givens like the Goonies or like,

Scott Benner 1:00:53
there's a good example. I've never seen that. Oh, what's the one where the dolls turned into a mad dolls after midnight? Chucky or a gremlin? Yeah, I've never seen that. Oh, so I've never seen all I've seen I saw jaws in a theater when I was five. And then somehow I saw meatballs in the theater. Oh, wow. Yeah. Which I think was inappropriate. And then for a long stretch until Star Wars came out. I didn't see any real movies. Well, the

Melanie 1:01:20
Christmas story I will say this about this particular one, you know, I think it plays like 24/7 around Christmas time on like TDs or something like that is when I finally saw it. And I don't think I ever really saw it or actually sat watched it until I was an adult. I think as a child. I don't know if it was because it was the theme with the shoot your eye out thing and that wasn't into guns. But I never really got into it. But as an adult, I could really appreciate it. It's good. It's

Scott Benner 1:01:47
classic. It had to be firm, but subtle. Flick says he saw some grizzly bears near Polanski's candy store. They looked at me as if I had lobsters crawling out of my ears. I could tell I was in imminent danger of overpaying overplaying my hand. So thank you. Yeah, I think it's from the Christmas story. But I don't I don't know what that is. Anyway. Yeah. My first movie was Grace. Oh, good one. Yeah. But I was really young.

Melanie 1:02:10
Well, and I'll say like, to your point, I mean, we didn't spend a lot of money doing that kind of thing. And you mentioned Greece, back in the day when everybody had VCRs. And you could like, we didn't even have a VCR. I remember for my birthday, I wanted to sleep over. How are we going to watch movies and stuff. We didn't even have a VCR. So my mom rented a VCR, for us to have for my birthday party.

Scott Benner 1:02:35
Oh, that's so nice. So here's one of the ways that I look back in hindsight. Now I know, my dad knew he was leaving us. And then he felt bad about it. So he started buying us things. And one of the things he bought would have been in let me I'm gonna do the math at about in 1983. He bought a VCR for us. And I'm gonna tell you that we were broke in a way that is hard to put into words, and a VCR back then, you know what it cost? I don't know. But I know it was a lot $1,000 Oh, my gosh, wow. In the early 80s, my dad probably didn't make $20,000 a year, you know. And so he bought this on a credit card, obviously. And it put it in the house. And then we would have to go to a pharmacy that was nowhere near our house. And they had a little room in the back where they rented tapes. And you had to give them they had the I think that there was like a deposit on everything you took out like, like every VHS tape was worth like 100 or $200 to them. So if you if you didn't return it, you'd be charged like this exorbitant number. Wow, to bring it back because they could bear they could they could only get a certain amount of them from the movie company. Yeah. And that's why you had to return it promptly. So other people could have it because they couldn't afford to have them in there. And be kind and rewind, yes. And rewind your tape so that other people don't have to like put in a tape. And it's not rewound yet, which is, you know, in a world now in a world now where you put your phone down watching live television, and then go to a computer and turn it back on and it knows exactly where you were. That must be a weird feeling for people to hear. Yeah, yeah, those things were incredibly like, I knew one person who had a VCR. And they to me were wealthy. And then when we got it, it was probably like, seen by the other people in my town is like the most white trash thing in the world that like our broke SS had a VCR. But oh, they didn't know that my dad was planning on leaving us and he was trying to be nice.

Melanie 1:04:40
He had a plan. Yeah, he's like, here's a man with a plan.

Scott Benner 1:04:42
Here's things. Maybe that'll make you feel better when I walk out. They didn't mean to bomb us out. I'm not bummed out. But I'm 50 By the way, actually, I'm 52 I just learned the other day. So don't worry, I'm okay. I'm just telling you. I'm just telling a story. Okay. All right, Molly. So Omnipod five has been good for you. That's yeah,

Melanie 1:05:02
you know, we've had a really, really good experience, I've missed the extended Bolus, that that was really hard for us, because we used it at school to overcome recess immediately after lunch. You know, we used it as tricks for, you know, different things or whatever witch that I really miss. And then when we reset it this time, I just, I was gonna be so thoughtful about it, and really pay attention and make sure the settings were tuned in and blah, blah, blah, and I just copied over my settings from the other. And his insulin needs, like his Basal rate, man, it has really gone up. So you know, reset, try number two with Omni pod Bob was, it took us a while to get dialed in. But we're there now. Thank goodness. So I'm happy again. Congratulations.

Scott Benner 1:05:51
And the, the control thing? Have you given some of it away? Or are you because it's I mean, you're going through an algorithm, you're basically saying, I'm gonna let it do things like, is that fighting with that part of your nature? No.

Melanie 1:06:05
Because when it comes to that, okay, like, I have no problem giving over to some body or something that I think is better at it than me. And I think, right, it was designed to do that. So I'm trusting like, please, please do this. This is sometimes incredibly hard. I don't I don't, I don't want to do this. You know, I want you to do it, if you can do it better. So yeah. Well,

Scott Benner 1:06:30
good for you. That's I mean, a big leap. It's not an easy thing for people to do. So it's very cool that you're able to do it. No other autoimmune stuffs popped up since then. No,

Melanie 1:06:42
good. I mean, of course, I have a fear. I think about it a lot now, especially at first, that was a little scary. But I've gotten past it. We did order the is it the trial net. And, you know, I wanted my son to do it. And my older son, and we thought about it for a while he was terrified. He didn't want to just do the fingerprick was something and and finally he broke down and just told me like I if it's coming, I don't think I want to know, and I just decided to respect that. Okay, no, good.

Scott Benner 1:07:14
Well, it's I mean, it's the right thing to do, right? You gotta to old enough, means 15. Right? Well,

Melanie 1:07:20
yeah, this was he was probably like, 13 at the time, but he's one of those wise old souls that he finally realized. Either he he really felt that way. Or he realized that if he said that I wouldn't I can prick his finger. I'm not sure. But either way. We haven't done it. That's

Scott Benner 1:07:35
more possible, perhaps just maybe he's pretty smart. I can trick this lady out of poking my finger. I maybe I could do that. Yeah. That'd be great. If you're giving them all this, like, old soul, like, credit, credit ads, he's just like, he's like, no, no, I don't want to I just don't want to do that.

Melanie 1:07:52
He's like, No, I'm just manipulative.

Scott Benner 1:07:56
Alright, do you think you'll move to Dexcom? Seven g7. When it's available to work with only part five?

Melanie 1:08:02
I suppose I'm hearing mixed reviews. But I'll be honest, I say that, but I haven't heard that much like a lot about it yet. Because I'm, I guess I'm kind of focused on our tools. Right. Yeah. I mean, what I'm really anxious about is the Enable for him to only carry one device, just his phone. Yeah. Which, I mean, who knows when that'll come? I thought I heard it was at the FDA. Now,

Scott Benner 1:08:27
normally, I don't know anything. So like, because I don't know. I don't work there, obviously. But I feel like on the pods close to iOS, or on the pod five, that's the vibe I'm getting is that there's things that happen in the background and all these companies like like the day you get something's not the day they figure it out. You don't I mean, so there's a lead up to it. And you can kind of see when they're doing things. I'm like, Oh, these are the things you do before this happens. Like, like, that's the way to like I've been around it long enough. Now that I know that as an example ducks comes like, hey, we'd like to come on and talk about the g7. I'm like, oh, okay, it's a year and a half away. Here it comes. Yeah. Like, like, they want to start this conversation now. And then, like, you can see how they plan things out. And so yeah,

Melanie 1:09:18
I definitely remember your first podcast about it. I got super excited about it. And I believe that that was before the Omnipod five, right. And so I'm excited for the idea of it. But now I'm locked into Omnipod five, right, so until Yeah, till that happens. I think

Scott Benner 1:09:33
of it like iPhone control for on the pod five Dexcom seven with Omni pod five. I think it's, I mean, you and I are talking now in July of 2023. So I'll like this is my guess. But there's I think this happens before the end of the calendar year. That's my guess. Now we'll find out when I put this out if I was really wrong or not, but and it's based on nothing someone said to me, it's just like I'm watching them do what they're doing. And I'm like, Oh, it seems like it's about six months away. That's how it feels to me. So we'll see if everything goes right, great. Yeah. Meanwhile, it shouldn't. I mean, it shouldn't be that much trouble, right?

Melanie 1:10:13
Well, and here's the thing. He is a person who is not a fan of this spa belt. He wears it. Sometimes he plays flag football, he'll wear it during that, obviously, he doesn't, you know, he swims a lot. He doesn't carry them. But when he's at school, he just wants to put it in his pocket. So here he is, you know, the kids today, don't even know what a button or a zipper is. I feel like at least mine anyway, everything's athletic, you know, pants and stuff. So here he is walking around with saggy pockets with, you know, all these devices. So it would just be nice if he only had to carry the phone. You know, you mean

Scott Benner 1:10:46
that four times a day when I'm wearing like sweatpants, and I go wear my headphones hat. And then I go back to the last place I was seated. And they're like sitting behind the chair or in the crevasse isn't like, Oh, nothing stays in my pants. like that idea. Yeah, yeah. Yeah. Kinda like that. I know what you're saying. All right. Melanie, is there anything that we haven't spoken about that you wanted to anything I missed? I don't think so. I did it. I mean, you did it. You did it. That's what I should have said. I do really appreciate you coming on and sharing all this with me. And it's a great conversation. So I can't

Melanie 1:11:21
cool talking to you. I mean, this is this is surreal. What a treat today. Thank you for having me. Not

Scott Benner 1:11:25
only tell people about that from it, why is it you're so excited to talk to me?

Melanie 1:11:29
I mean, cuz you taught me everything I ever needed to know about topics that they didn't teach me the hospital.

Scott Benner 1:11:35
I say you owe me. Is that what you're saying? A little. Maybe. So Arden says to me the other day. She goes, You know, if mom dies, and I'm like, where's this going?

Melanie 1:11:49
Okay, I'm listening. You're gonna

Scott Benner 1:11:52
have no trouble meeting a lady and I was like, You don't think so? And she started telling me about like, who she thinks I'll end up with and all this is very weird conversation. She was your wife sitting there? No, no, she wasn't with us. But don't worry. We told her about it. We got home. And so she's telling me the kind of part she's like, I think you're an add up with this kind of person. Blah, blah, blah. And she goes and if that doesn't work out, you are such a catch for some lady whose kid has diabetes or or or a woman but type one.

Melanie 1:12:19
I mean, seriously. Nailed it. Yep.

Scott Benner 1:12:23
She's like, you're not gonna have any trouble hooking a type one lady, that's for sure. So then, you know, we're laughing because it's silly. And then we go home to like, so yeah, try to imagine that my Arden and I have like the same exact personality for the most part. And Kelly and Cole sort of share a similar personality. And I our shenanigans are not like they're not Kelly's and Cole shenanigans. Like, like dig. So Cole's gone. He's off working. He's near you, actually. But we we come home to share this with Kelly. Like, we're like, I'm like, Hey, Cal Arden's decided what kind of lady I'm going to be with if you know you should die. And Kelly looks up like she's working. She looks up like what the hell is happening? Again, then we start joking back and forth. And she's like, what's wrong with you guys? And it's and she says things like, it's so much worse when you're together.

Melanie 1:13:21
Right? It just compounds Yeah,

Scott Benner 1:13:24
because everything I'm thinking, Arden's thinking

Melanie 1:13:28
about like just bouncing off of each other. It's gotta be

Scott Benner 1:13:30
absolutely horrible to be involved in if you're not her. I so like, it's yeah, anyway,

Melanie 1:13:38
I noticed kind of a twisted. I mean, a little bit crazy. That conversation

Scott Benner 1:13:43
were like setting each other up for jokes that Kelly doesn't see coming. But we're, we're just we don't even have to look at each other. Like I say something. I know what she's gonna say next. Like, you know, we can kind of, it's like talking. It's like me being here with a copy of myself. So I love it. Yeah, Kelly's like, by the time it's over, she's exhausted by us. She's like, I'm gonna I'm gonna go back to work now. Yeah, yeah, but I'm glad to know what kind of woman you'll marry if I die.

Melanie 1:14:07
Like, all right, good. I was worried about that. I could check that off the list. Exactly.

Scott Benner 1:14:11
And we're laughing and she's not amused like, just so that I'm being clear with everybody. She's not

Melanie 1:14:17
I mean, no, this is this is awkward. Yeah, one of those really strange conversation

Scott Benner 1:14:24
not awkward to get into art and I so anyway, hold on one second for me.

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Podcast if you're not already subscribed or following in your favorite audio app, please take the time now to do that it really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com

#1115 Lone Star

Nick's son was diagnosed 3 years ago in the middle of the pandemic.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, welcome to episode 1115 of the Juicebox Podcast.

Next son was diagnosed with type one diabetes in the middle of the pandemic. found during lunchtime at school shaking uncontrollably. He was rushed to the PICU where he was later diagnosed. Nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. Don't forget to save 40% off of your entire order at cozy earth.com. All you have to do is use the offer code juice box at checkout that's juice box at checkout to save 40% at cosy earth.com. When you place your first order for ag one with my link, you'll get five free travel packs and a free year supply of vitamin D. Drink ag one.com/juice box. If you're not already subscribed or following your favorite audio app, please take the time now to do that it really helps the show and get those automatic downloads set up so you never miss an episode.

This episode of The Juicebox Podcast is sponsored by the Dexcom G seven made for all types of diabetes Dexcom G seven can be used to manage type one, type two, and gestational diabetes, you're going to see the speed, direction and number of your blood sugar right on your receiver or smartphone device. dexcom.com/juice box. This episode of The Juicebox Podcast is sponsored by the continuous glucose monitor that my daughter wears the Dexcom G seven dexcom.com/juice box Get started today using this link. And you'll not only be doing something great for yourself, you'll be supporting the Juicebox Podcast.

Nick 2:16
My name is Nick and I am the father of a type one diabetic son. I also have a 16 year old daughter and a wife.

Scott Benner 2:25
How old is your son?

Nick 2:27
He is 13. He'll be 14 in August. When

Scott Benner 2:31
was he diagnosed?

Nick 2:33
may have three years ago may. Okay. 2019. Right in the pandemic,

Scott Benner 2:39
any other autoimmune in your family?

Nick 2:42
No, none that we're aware of? Like nothing. It's strange. I hear you ask that question a lot. And I'm like, I don't have anything. We get a couple brain tumors and my wife's family lives had there were 100. So I

Scott Benner 2:58
know nothing. Celiac thyroid, uneasy stomach after dinner like nothing. You can think of

Nick 3:05
ah, you know, I may have a touch in the last six months, like gluten sensitivity. I don't know if it just been almost 45 Or what it is. But I've kind of watched my Gluten seems to help. But as far as any diagnosis, family members or any other type one or thyroid or anything like that, there's nothing yet. So

Scott Benner 3:25
how did you end up finding out that your son had diabetes, what clued you into it?

Nick 3:31
We came home they were in home school at that time, or online school. And my wife and I have a small business with her family here in town and came home for lunch to get their lunch going because they were you know, each on their computers and our son had been you know, shows showed all the normal signs before looking back. But my wife came home about 15 minutes for I did got his lunch ready brought it upstairs as I was coming home to you know, make a quick sandwich. We're going back to the office and I just hear a scream and my wife come downstairs like there's something wrong. There's something really wrong. That's like, okay, she's gonna call him the doctor now go up there. And he was just kind of shaking and couldn't really talk and to sit I did. Something's wrong. Ended up you know, even though it's lunchtime, our doctor answered the phone, we ran over to his office. And it was only one like only one parent could go in at a time. So my wife ran him into the office and I'm course you know, in my car, googling what the heck this could be and coming up with some pretty bad stuff. And about 10 minutes later, she calls to get the car there have a room for him at the emergency room and I was like, Okay, that's great. But what is wrong? Like, why? What's going on? I know nothing right now. She just said they said something about diabetes. And I was like, What are you talking about? Like there's no way and she's like Nick it just, we gotta go there's already a room so we run across the street to the hospital and I Uh, sure enough, he was in DKA. And in not doing real well.

Scott Benner 5:05
Wow. So he was convulsing, not quite convulsing,

Nick 5:09
but he was shaking, he gets really shaky. And he was pale white, and couldn't really communicate well, I don't remember what his blood sugar is, it was pretty high. And they got IVs. And, um, you know, started bringing them down. And then he got transferred. They told us there's another child in the ER also with the same thing going on. And whichever one is worse, is going to go to the Children's Hospital about 30 minutes south first on an ambulance. And so I'm just kind of sitting in my car and I see the ambulance leave, and I call my wife. She's like, Nope, we're still here. So about an hour later, they take him and we're not allowed to go in the ambulance with him. And follow him there, dropped my wife off again. And then my son, and he was admitted and spent about three nights in the PICU. Wow.

Scott Benner 5:59
Yeah, that's, uh, that sounds like both of those kids weren't doing well.

Nick 6:04
No kidding. You know, but we managed to get through it. My wife would spend the days there and I'd spend the nights or vice versa, whatever we needed to do and got out of there and just started this new journey.

Scott Benner 6:18
When you said that can't be the her, is it because he was 11. And they said, diabetes. I

Nick 6:24
just, it never crossed my mind. It's a possibility. My dad's best friend was a type one. So I grew up around it. I knew a little bit. And he's actually been a huge resource and help the last three years, and I just it just never crossed my mind that that's what was going on that this could cause what was happening to him. I mean, obviously, uncontrolled blood sugars have great effects in your body. I had no clue. Yeah. And I just, you know, the first thing, honestly, there's no way like, there's something else, he's got a bad infection, there's something else going on, there's no way. Again, no family history at all. So it just kind of came out of the blue. You know, obviously, he picked up some bug. We think, early December, we were on a trip to DC. So when we first started noticing some signs, looking back, my wife, remember smelling his breath, and it was sweet. And he's a really good kid. And he would have to move the outbreaks and was looking just thin, you know, wetting the bed, all the common signs looking back that we just missed, and probably would have taken him to the doctor, at some point, but doctors weren't even seeing patients unless they were super sick that time. So that, you know, it kind of makes you question. You know, could we have caught this earlier? Probably could have. But in the current climate that time, there's no way I don't think we could have,

Scott Benner 7:45
how did they manage manage the education piece when you guys couldn't be in the hospital at the same time, we

Nick 7:53
were allowed. We did have a class at that hospital before we left. In all honesty, it wasn't very good and probably set his back years of trying to get this under control. Like we left the hospital and never even I never even gave him a shot. Never practice a shot. Nothing. They just kept saying here's all the gear you need. Here's all this, you know, pins. And we walked out with two suitcases with the supplies that I didn't need. With very little knowledge. In my opinion, I was not happy. We ended up changing doctors, that the first year after about six months of putting up with it. It just we were not a good fit. Or they weren't a good fit with us. And you know, we've walked out had no idea what we were doing basically, he was starving, hadn't eaten anything really in three days. You know, grabbing the hamburger across the parking lot. And like, Thank you need 10 units of insulin. I don't know what this kind of what the math turns out. I don't know how we do this. So I stuck him. And that's how we started and then I had to figure it out from there.

Scott Benner 8:56
Well, your wife, also she didn't get direction either. It wasn't just you. Oh, we

Nick 9:01
were together the whole time. Oh, God, like we didn't have to. We didn't feel like we had good education at all. We Yes, we count carbs. And our carb ratio was like 20 to one or something crazy like that, that time just didn't know anything. Like we kind of left in a in a fog. And there we go. Here's a number to call if you have any questions. Well, you know, we're checking blood sugar on his finger and it's going crazy. And we're calling and having to wait, you know, an hour and a half for an answer. Oh, you know, for them to call back. Like, why are you even calling because we don't feel comfortable giving him his insulin. We don't know what we're doing. Yeah, we'll just give it to him. Well, I mean, that's the right thing to do. I mean, we were scared. literally scared at this point.

Scott Benner 9:45
Also, so it was all the stuff that led me to call you is 90 minutes old now. So exactly.

Nick 9:51
Yes. Totally different. Pretty, pretty hot conversation with a doctor or PA few times before we decided we gotta find looking better? This isn't gonna work for us. It

Scott Benner 10:02
was was this, I don't want you to tell me where but was it an institution that otherwise you would have been trusting of?

Nick 10:08
I think so. Yeah. Yeah, I mean, they had, I've never dealt with them directly. But I can guarantee you with anybody, I've had three or four other families in our immediate area that we know that whose kids have also been diagnosed type one about the same time as my son within a year or two and all the same age, and we tell them, here's our experience there. I don't know, you know, just be careful. And here's kind of what we like now. And it's worked a whole lot better for us. So we ended up driving an hour and a half north now to see our endocrinologist and then they have a satellite office that will meet with a physician's assistant two or three times a year also. Just so we don't have to drive as far.

Scott Benner 10:51
Alright, so he's diagnosed now you guys don't have a ton of direction they give you pens. What kind of insulin

Nick 11:01
human log and whatever the longest. Lantus. Okay.

Scott Benner 11:06
Lantis de novo and Huber log novella. Yeah, one of the sorry, no, vlog, I apologize. And you don't know what you're doing? You're counting carbs. One unit covers 20 grams,

Nick 11:17
something like that? It was it was ridiculous. Yeah, it was it was on a.

Scott Benner 11:22
That doesn't sound right. For an 11 year old? Yeah, it's all?

Nick 11:27
No. So we obviously struggled for a while until we we ended up. Like I said, part of it too, was our insurance. Like I said, we have a small family company. So we didn't have the correct insurance to deal with an auto immune disease of a child at the time, we basically had catastrophic insurance and something happened to my wife or I, because you know, your kids are supposed to be healthy all the way through life. So we ended up just calling and saying, what's the cash price? We'll take it. I mean, until we get our insurance fixed, because we can't change it to the first year. Right. So we had, you know, that's the other side that we have to deal with all the time that just makes you want to pull your hair out. That's actually harder sometimes in trying to be your kids pancreas, dealing with

Scott Benner 12:10
the insurance company. Oh, absolutely. Yes. Yeah, no kidding. I, my sister all just called me this morning, that she got something from her doctor was no trouble. They gave it to her. A month later, she calls back and says, Hey, you know, I need to refill and the insurance company says now you can't have that. She gave it gave it to me 30 days ago, like Well, now, you know, yeah. Now you need this. It's like what what? Okay, she's trying to work today, you know, and instead she's on the phone with an insurance company. Like, you know, begging people, people who don't know what she's talking about, like, you know, just phone jockeys. And and it's just a, it's a never ending hellscape of and then once it's diabetes, it's insulin meters and pens, and you know, insulin pumps and CGM and you're having like a different argument over and over again. It's, it's maddening. It really is. Today's episode of the podcast is sponsored by Dexcom. And I'd like to take this opportunity to tell you a little bit about the continuous glucose monitor that my daughter wears the Dexcom G seven, the Dexcom G seven is small, it is accurate and it is easy to use and wear. Arden has been wearing a Dexcom g7 Since almost day one of when they came out, and she's having a fantastic experience with it. We love the G six but man is the g7 small, the profile so much closer to your body, the weight, you can't really feel it and that's coming from me. And I've worn one I've worn a G six I've worn a g7 I found both of the experiences to be lovely. But my gosh is that g7 Tiny and the accuracy has been fantastic Arden's Awan C's are right where we expect them to be. And we actually use the Dexcom clarity app to keep track of those things. That app is built right in to Arden's Dexcom G seven app on her iPhone. Oh, did you not know about that? You can use an iPhone or an Android device to see your Dexcom data. If you have a compatible phone, your Dexcom goes right to the Dexcom app. You don't have to carry the receiver. But if you don't want to use the phone, that's fine. Use the Dexcom. Receiver. It's up to you. Choice is yours with Dexcom dexcom.com/juicebox.

Nick 14:27
Yes, I mean, we had to read our one year for Omnipod. Five now. So got the new prescription. It got kicked back something along the lines of it also had the intro kit on it and then need it prior authorization. And so they wouldn't even give us the pods because that was part of it.

Scott Benner 14:44
Yeah. And that was in the very first the very beginning of Omnipod. Five there was like an insurance. I don't remember exactly how it went anymore. But yeah, they would give you the intro kit but then you could but not the pods or something like that afterwards. And

Nick 14:57
yeah, so a year later, we're still having some issues with what's getting coated and it's been a fight and my wife just, I just say, Oh, it's six o'clock, it's time to here's a glass of wine, Go, just go try to relax. You're

Scott Benner 15:11
gonna say, here's a glass of wine, drink it, then we'll call the insurance company. Well,

Nick 15:16
I don't have to bail her out of jail.

Scott Benner 15:20
Well, how long does your son use injections for? And what was his experience like being diagnosed? Was it something that he went with? Or did he kind of fight against it how to all work?

Nick 15:32
I will say this, he has been awesome. Never really any downtimes he has learned to speak up and say, Hey, I don't need any more juice, or I don't need any more insulin, like y'all are wrong. I don't care what the number says, Just trust me. We learned pretty quick to communicate with him. And then let him kind of take charge of what he thinks he needs. Because we weren't doing it right. But we're still not doing it. Right. My opinion, we're still learning to this day, we have some room for improvement. I think the initial doctors that we had, they scared the heck out of my wife and me and my wife still gun shy on insulin sometimes. And just because, you know, they're sitting there telling you, there's 100 units of insulin in this thing, and it could kill your kid if you give him too much. You know, there's still that thought in the back of our minds that I think has hampered us early on. And we're just now coming over that bridge to like, okay, we can we can do better. Okay. My son Drew is been a rockstar doesn't let them bother it. He doesn't go where on it. Like, he doesn't go to school. He goes to a small school here in town. And the administration was like, Do you want to give a presentation on your first day? And he's like, No, I just want to be a kid. Like, I don't want anything special. I don't you know, he could, you know, he gets to have this phone at school and no one else does. And his sister does. This gets she gets an alarm. Outside of that. He's like, I don't want anything else. Like, I just want to be a kid and his friends don't care. He just goes and has a good time. They were lucky. They're real lucky. But yeah, he's had, he'll let us know. Because we were holding him back in certain areas, just because we didn't know what was going on. He was like, hey, you know, it's okay. I can have a friend over like, we can, you know, we can do things. Like oh, yeah, okay, you're ready for that? We may not be but you're ready for that. That's fine. Tell

Scott Benner 17:28
me a little bit about how everything gets so confused. Like the I don't really know what I'm doing. We don't feel like we're on firm footing. You know, you're down to listening to the kid tell you I don't need more juice right now. Like, so it starts off rocky at the hospital, I get that the end up with a doctor. That's not real great for you. And but now how long have you been with a better physician?

Nick 17:50
We're coming up on I guess two years now.

Scott Benner 17:53
Okay, that's fair, a fair amount of time that so yes. What? What happens? Is it just the fear? Do you think it was just someone saying to your wife, hey, this insulin, you gotta be careful. And then so she sort of can't use it the way it needs to be used? Or is it Poor direction?

Nick 18:10
No, I think, a combination, but the fear, I think is what's limited us the most. And like I said, we're overcoming that now. We lived in fear of insulin for too long, I found your podcast started listening about a year ago, and kind of started injecting some of the information you give out throughout the year, you know, just to see if some of this will work. And you know, and of course, the one time I say let's Pre-Bolus, early, whatever we did, we screwed it up. And it was you know, he shot down like, it just hit the floor. So we're doing better now. But it you know, it was a lot of trial and error trying to get get him down. I will say the the Omnipod five has helped make things better, because when he was just on the regular one, I was up all night, his Basal rates obviously weren't right. I didn't know what I was doing. And when I say I, if I slept through the night, once during a week, for two years, it was a miracle. I mean, I was up all night with him. So I think part of it was just pure exhaustion to distress. You know, you're in a pandemic, you don't know what to believe, trying to make sure. You know, he doesn't get it because at that time, we were afraid that you know, he'd end up in the ER, and you know, or worse. So we were locked down actually took him out of school for two years, hired a teacher to homeschool and basically, you know, online, his last two years of elementary school Wow. Which worked out great for him because he's very diligent. He got his work done by noon and was playing video games after lunch the rest of the day, so he's happy that

Scott Benner 19:47
I can maximize this time. I know what to do. Like Absolutely.

Nick 19:51
Like homeworks done Dad, let's get lunch and I get some video games to play. And we always know who was sick because they're like who you're playing with. Oh, so and so. Okay, even She said, because he's done that at school right now.

Scott Benner 20:01
Isn't it fascinating that the message is insulin is dangerous, but then there's no effort from them to make sure your settings are correct. Correct.

Nick 20:10
Every setting change was very incremental. We finally get to the point, I guess, about a year ago, we started. And my wife and I manage this together, we manage everything together and slowly have been trying to get, like I said, his had the competence to change the setting away from what a doctor said. And we're doing a lot better job.

Scott Benner 20:32
I just mean, I don't know, like, I don't know what I mean. I mean, it'd be like, if you bought a car for the first time, and someone said, listen, cars are great, but gasoline is very flammable. And then they just started pouring it in the glove box for you to store it there. They're like here, just, we can get two gallons. And here, maybe we could fill the seats like, well, like this insulin, it's so scary. If it's so damn scary. Why don't you make sure that the kid's Basal rates, right so that he's not low all night long? Or that his insulin to carb ratio is somewhere near? Correct. So you're not bouncing all around during the day? It's just, I don't know, I find that fascinating that someone in a position of power could say that I know enough to say that this is dangerous. I don't know enough to tell you how to use it. Like that's like, how is that the person in charge telling you? You know what I mean?

Nick 21:22
No, I know. And then we know we're with the head guy, or whatever. And go, Sure you're just too busy. Too busy talking to my son like he was for like in cartoon voices the whole time. And we just were like, this isn't right for us like that. My son's like, really, he's a doctor. So once we changed, it kind of changed the direction but it took it took a year or more for us to start trusting the process like okay, here's what we need to do. And understanding we were set back a year, easily

Scott Benner 21:51
they of course, contour next one.com/juice box, that's the link you'll use. To find out more about the contour next gen blood glucose meter, when you get there, there's a little bit at the top, you can click right on blood glucose monitoring, I'll do it with you go to meters, click on any of the meters or click on the Next Gen and you're gonna get more information. It's easy to use, and highly accurate. smartlight provides a simple understanding of your blood glucose levels. And of course, with Second Chance sampling technology, you can save money with fewer wasted test strips. As if all that wasn't enough, the contour next gen also has a compatible app for an easy way to share and see your blood glucose results. Contour next one.com/juicebox. And if you scroll down at that link, you're gonna see things like a Buy Now button, you could register your meter after you purchase it, or what is this? Download a coupon? Oh, receive a free contour next gen blood glucose meter, do tell contour next.com/juicebox head over there now get the same accurate and reliable meter that we use.

Nick 23:01
And you know, and also, you've said this a million times you trust the doctors like doctor said, it's this many carbs. And this is supposed to work and then his blood sugar sits at 300 for the rest of the day. What the heck are we doing wrong? Like why? Why can't we get this right? You start questioning every decision you do right now, you just want what's right for your kid, especially

Scott Benner 23:21
when the variables are unknown. Or you could be could have eaten something where you counted the carbs correctly, but the impact was greater than the carb count. And so now you're like, you roll past that in your head. You go now we count the carbs, right? That's not it. And then you move on to what else could it be? You don't even know what else it could be. And you're missing you know, you end up missing the the actual problem and also men who don't have children shouldn't be allowed to talk to kids.

Nick 23:48
Or know if you have kids or not. That's a good golden rule. I can I can stand behind that one for sure.

Scott Benner 23:54
It before guys have their own kids. They're not like, they're not terrific at it. You know, I just I just love that your son's sitting there. 1112 years old. You know, somebody's talking to him like Donald Duck and he's like, Oh my god, what is happening?

Nick 24:10
He's gonna wicked little sense of humor very dry. It's like, it's real funny. He'll be like, thirsty dead. This guy, Julian kind of quiet this guy like this as best we can do like, Okay, you're right.

Scott Benner 24:20
I've walked through a number of parking lots of my life with art and goes, Why do we come here? Like, they have the they have the prescription pad. I don't know what to tell you. I don't know where to get one of those. So

Nick 24:34
we kind of need this guy for a little bit at least a little bit longer.

Scott Benner 24:37
So in your, in your note to me. You said that you you kind of found the podcast first. So how did that happen? How did you find it and what did you start taking from it?

Nick 24:46
I was probably just desperately searching online for answers. Got a couple books, kind of skim through them. Nothing jumped out at me is making sense. I don't No, I can't remember exactly how I found your podcast. But when I came across it, I started listening. I drive a lot, usually hour and a half to project. So put a podcast on. And so once I found yours, it just a lot of what you were saying was making sense. I just liked the stories that people tell, you know, everyone has very similar stories in a lot of ways, same struggles, and it just felt like, okay, I can connect with this, I can see what's going on this little nugget here may help me out down the road. And it just, you know, and then I got on the Facebook group, and my wife does not listen to the podcast, but she's on the Facebook group as well, as long as another one. And in the north Texas area, that she knows a couple moms or is referred to that got her into a little private group up there. And it's just, it's just a good community for information because he's 13 he's getting ready 14, we're dealing with growth hormones, and you know, trying to do sports and have a normal life with him and that whole Beckham or a sister or anybody else, and just having as much information, or someone at least to call and say what the heck did we do wrong? Or what do we do here? Who do you call we're not happy with this or that? And it's just it's just a nice feeling of community that gives you a little bit of confidence that you're not the only one living this life of being your kids pancreas. Yeah,

Scott Benner 26:19
no kidding. So okay, what started to make sense when you were listening? Like what was the first thing that struck you is like, oh, that's inconsistent with what I'm doing, but makes more sense than what I'm doing.

Nick 26:31
First thing I remember is that our Basal rates were not right. I was trying to Okay, he's going down at two o'clock in the morning. So at two o'clock in the morning, I was adjusting his Basal rate. All that did was when I gave him juice, or whatever he was, you know, sugar tabs, whatever we were doing at the time. You know, an hour and a half later, he was skyrocketing up and I'm sitting there up all night long, you know, popping him with insulin trying to get him to come back down. You know, I learned like, okay, insulin takes more time. Basal rates, what happened 45 minutes or an hour ago with his Basal it's affecting him now. Yeah, I mean, that's the first thing that opened my eyes like, okay, we're trying way too hard to manage this. It'd be five minutes with basil when that was the wrong technique.

Scott Benner 27:14
Yeah, I in my head pictured as two different clock faces. And there's the impact, like what your blood sugar's doing, and there's what the insulin is doing. And I always wish there was a way to say it, like without pictures, but you can just, if you just turn that clock face back, the insulin clock face back so that it shows you, Hey, I know all everything is happening at two o'clock feels like this is where you should make the adjustment. But let's just move the clock face back for the insulin, and then say, oh, okay, one o'clock, one o'clock is when I should be trying or even 1230? Who knows? Right? However long it takes that insulin to work for you. I don't know, I tried a number of different ways to say that say it. But I think what I've come up with is that, you know, what's happening now is from what you did before, you know that that kind of thing is, is so important to understand, right? Because it's a, I don't know, again, if it was a shield and somebody was shooting at you. And the shield was really heavy. It took an hour and a half to pick up. You wouldn't know that you know, the first time you somebody pointed gun at you and you go home and pick up the shield and you couldn't get it done. But if I told you at noon, hey, someone's gonna come here at 130 and shoot it you start picking up the shield now. And then you know, you'd be okay. No one like a doctor's never going to tell you that again. Like oh, insolence very dangerous, but you don't want to bother to let me know how it works. It's fascinating, right? Like it? No, it's not right.

Nick 28:40
It's frustrating that you've kind of feel like that should be insulin 101.

Scott Benner 28:43
Yeah, the first day. Hi, this is how this works.

Nick 28:47
And how this works. Not you're gonna kill your kid with this. If you give them too much.

Scott Benner 28:50
Most of them are just so busy going like, well, let's inject into a banana or an orange. You didn't even get that, by the way. But But all that does is take visually the scariest part of it and make it more scary. Because by the way, like, you know, I get wanting to practice and all that's fine. But that's not the same as doing it to somebody. I gave Arden an injection last night. She hasn't had an injection like, I don't know, a year and a half. And I'm holding that needle going. I don't know what I'm doing. I haven't done this in forever. You know? Yeah. And at the same time, it's the insulin like the actual scary part is how the insulin works and that I don't even think forget, they don't teach it to you. I don't think they know either. Especially in a hospital setting, by the way.

Nick 29:32
Yeah. And you're already stressed out and you're just trying to, you know, learn as much as you can, and you have no idea what's going on and what what the future is going to look like. Right? Yeah. And then you throw in other factors. I mean, his first week back at real school, you know, it's hot. It's in Texas, it's August. And you know, first week went fine. I think it was like the Monday after that. They're school they can they the kids eat altogether. Like from seventh grade all the way to 12th grade. And I'm in about an hour and a half away, and I'm checking his Dexcom. And everything's looking good. And my wife said, Okay, we gave him five units for lunch. And I'm checking out at lunch. And between getting my check and getting to my car, his blood sugar was just falling off a cliff like double arrows straight down. My wife calls that I'm running a preschool now, because they don't have a nurse at our school or too small. And just like just call him so he's walking to the office. So I call them to Hey, buddy, what do you do? And he's like, Oh, I was playing football with all the juniors. Like, it's 104 degrees outside and it's I just ate real quick took all my insulin and now I'm playing. I was playing football. I was like, okay, that's why your blood sugar is dropping like a rock acid. Alright, drink some Gatorade, you know, stay on the phone with me to get their moms in the way. Yeah, and you know, they have a whole refrigerator, just a shell for him. He gets it. It's like, Alright, I need to check your finger. And you know, the administration's their wife's there, there's a lady to help to take care of them whose husband is type one as well. And because at this point, I think it's like 55 double arrows down. He's already had two or three Gatorades and juices just trying to stop this drop. And, you know, I'm in the car by myself. Just listening cannot be there to help. And, you know, he checks his finger and the five seconds go by and I hear like this. gasp I said, What number is it? He said it. But I'm like, There's no way he'd be you know, there's no way he's thick. So they get to glucagon. He goes, Oh, wait, I'm holding upside down, isn't it? Oh, good child. Now the room when he said six, like I was like, he shouldn't be standing. How's he at six?

Scott Benner 31:42
That's the story of how I had a small seizure and stroke of my own sitting in my car. Wow. Like

Nick 31:49
your number for sports from now on is now six. You realize that don't you?

Scott Benner 31:53
Wait, it goes six? Oh my God, that's six. No, and that helpless feeling? Nobody can? No one can describe it. Probably. I know it. You know it. A lot of people listening know that feeling. And it's in your wife's, you know, mad dashing across town. Try not to, you know, take out somebody's dog in a crosswalk. And. And that kid's just sitting there. You know, doesn't know what he's he just tried to play football. That's it? Yeah. He's trying

Nick 32:24
to hang out and be cool with the older kids. Yeah. So we're like, hey, well, then then that started that downward spiral of how you I want to play? Are you gonna play with your friends after? You know, during lunch? Yes. Okay, so we're gonna try to dose after lunch. We spent a year trying to figure out how to, we never got that right, we still still haven't got that right. Trying to dose him right, depending on his activity, then try to catch it up when he's in study hall afterwards. That if you have any tips on that, because it's eat, play hard for 30 minutes, and then go sit in or, you know, sit in a room for the rest of the day. We never got that right. Very rarely get that one. Right, what's happening

Scott Benner 33:04
is he's falling during the activity or after it, usually

Nick 33:07
pretty quickly, during he fall pretty fast. I mean, there were times when he has 90 carbs. And he's like, Hey, I'm gonna go play football or soccer. And we're like, just don't even dose we'll figure it out afterwards. Like I don't, it's 100 degrees, you don't need to go have a bunch of insulin ahead of time, at least in our opinion. And then you know, he'll go play and then text my wife for me afterwards, I got done playing like, All right, well, let's start guessing how much you need now, because you stayed kind of level for 1520 minutes, but you're getting ready to shoot back up? Yeah. That's that's been the one thing that we have not figured out the math yet

Scott Benner 33:44
on how to put just a small amount on for the activity and then get the rest going before the spike.

Nick 33:50
Yeah, absolutely. We get hit with the spike almost every day. So, you know, two hours later, we finally get them back down. And then it's time for basketball practice or golf or something else. Is

Scott Benner 34:03
it not? Is it not just as I mean, I guess, as I'm getting ready to say that, I guess it's not but I was gonna say is it not just as easy as bolusing during the, you know, towards the end of the activity, but he's doing something so you're he's not going to stop to remember to do that. I guess. No,

Nick 34:19
he's not going to stop honestly. Yeah. No, he's just not. Yeah. I mean, I guess if we point blank asked him to Yes, he would. But let him play this is that's 15 or 20 minutes of freedom throughout the day. Yeah, yeah. No, I

Scott Benner 34:34
hear what you're saying. And that's a 90 carbs for a lunch. Is it if that's a fair amount of insulin for him to I would imagine. Yes,

Nick 34:42
it is. I mean, he'll go anywhere from 60 to 9090. is probably pretty high that one day, you know he wanted we do not limit him on what he wants to eat and let him he needs to put on weight he needs to grow. honestly think that first year that we really didn't have control. All His blood sugars are way too high all the time. I don't think he got as much nutrition. That's what we've been told as he needed to, just because his blood sugars are too high, and he's a little bit behind in height. He's gonna be he's a late bloomer. Anyways, I was a late bloomer, my wife was my daughter, you know, very late. So, and he should be going into his freshman year. And because of his late birthday, he's just going into eighth grade. Now, we held him back a year. He's still one of the shorter kids, even though I'm fairly tall, both his grandfather's are very tall. But I was 99 pounds. five foot one my freshman year in high school, my junior year, I was six foot one, so I ended up growing late.

Scott Benner 35:44
Do they check his thyroid for you during the bloodwork?

Nick 35:48
Oh, yeah. Thyroid, they actually started scanning his hands to see his growth plates, I think, growth factor. They're a little worried about that. But I think he's slowly catching back up. But now his downloads have been fine. Okay. And then any issues everything in the correct range. We like his new doctor. He's very analytical look me. He spends a lot of time with you going over all the test results explaining everything where he is. He's he's kind of the mad scientist type. And we just kind of like, the way he addresses everything very point blank and goes throughout the entire chart. So we kind of know, why is this number this and this number is this. And then his PA is really good here in town. It really helps more with the car ratios. Okay, I think you can kick this up a bit more, try working on this.

Scott Benner 36:41
Do me one favor, go check the last lab work when you get a chance. And just make sure that it's T sh isn't just in range? Make sure it's below two below two right now? No, because if it's like three or four, they'll say it's in range. But that's very indicative of him needing a thyroid replacement. And that could be a reason for like slow growth. Meanwhile, this could all be wrong, but it's just worth looking at. Because they'll call like a three TSH in range. And optimal and range are two different things.

Nick 37:20
Absolutely, we'll do it. Yeah. Cool. So I appreciate it. Yeah, of course.

Scott Benner 37:25
I mean, the other thing about the activities, it's just sucks, like you could you know, you're using a pod FiVER, I would say you could use a, you know, maybe an extended Bolus, where it didn't, he didn't get anything upfront, but it started to go in, I don't know, over an hour. And that way as he's eating you, like, you know, thinking about an old extended Bolus, like you so many algorithms now. But, you know, if you ate at noon, and you said, Oh, this is 60 carbs, I'm going to extend the Bolus, give it to me over an hour. And I want 0% upfront. So basically, it would like you know, whatever that say you were one for 10. So you're gonna get six units, it would slowly give you six units over the hour. And that might get him past the, the activity. And that has already you know what I mean? Then have enough going so that it's it's active and starting to work as the spike comes around. That's just one of the ways I would think about it.

Nick 38:21
Yeah, not found going to manual during the day. If he's got a sticky Hi, and bumping up as basil pretty good. Gets him down better than just keep hitting him with boluses it just for whatever reason. Maybe I'm not hitting him hard enough. But without crashing him. I can usually get him down better. If we don't give him his insulin fast enough, or he just has a sticky high, which still happens too frequently. But that's on the five it seems to work best for us to get him down without just you know, the crash and catch situation all the time. Yeah,

Scott Benner 38:55
yeah. You don't want to be doing that if you don't have to for sure. No,

Nick 38:58
absolutely not.

Scott Benner 39:01
So but um, we've had five overnight. It's been great for you. You're sleeping again. Yes,

Nick 39:05
I'm sleeping again. Absolutely. I don't think we would not be sleeping without it. I mean, from almost the first week. It has been great. As far as the nighttimes go. And it took you know, a month or two for things to kind of settle out but we weren't that great before. So my expectation you didn't take much to impress me like I said, we were coming out of you know,

Scott Benner 39:33
shooting pretty low. Like my bar is not Hi, Scott. I would like to just sleep a couple of times a week. Oh my gosh. Oh, yeah.

Nick 39:43
Now we joke. If if I'm up all night is because I screwed something up with his meal for dinner or we just we screwed it up. It wasn't anything else. It wasn't a pot. It was something we did messed it up.

Scott Benner 39:56
Arden had Chinese food last night and for Get the first hour or so I was like, wow, her, her Bolus was really great. And then I kind of started working in the evening. And I just like, silence my phone, I was making the podcast. And when I when I was done, I looked up like what the hell happened to your blood sugar and she was downstairs like cooking, she was baking. And she's like, I don't know, I've been baking and like, it's not going well. And I'm like, Well, I'm like, you're way off here on your blood sugar, like your blood sugar is like almost 300 like 280 or something like that. I was like you did not. Then I looked, I'm like, this is the amount of carbs you did for that food? Because yeah, I'm like, that's not enough. So she's like, Well, I've been trying to push it back down. I'm like, I'm like, screw that. And we just injected a bunch like of insulin. So like, I did a quick calculation in my head. And I was like, Look, you're gonna have to inject some, like, let's get ahead of this. You know, and so she did. And she came back down really nicely. But I think she missed. She missed those carbs by my gosh, a lot, maybe 20. And that was enough to really cause a problem. And that funny, like just just missing it by 20 carbs. And it feels like you didn't even give yourself insulin. So it

Nick 41:10
looks sure it's like looks like it. Yeah. On the graph, right. Yeah. And then, you know, the other thing is, don't look at the arrows. Look at the graph. We've learned that from your podcasts as well. The arrows will scare you. But if you look at the graph and see the numbers, you can you can kind of tell he's leveling out. We don't need to panic right now. Yeah. Because I mean, we'd be panicking. It'd be you know, whatever. 122 straight down and giving him juice and then literally the next reading the minute laters, like 121, straight down like the arrows dead straight down, but he only went down to one and we just, you know, now we're giving corrections. So we've learned to look at the graph, trust our son, he says he needs it or he doesn't need it. Right now. He's just struggling with a very active 13 year old boy, right? Even last last night, just you know, he was invited by a friend of mine to go play in a golf tournament. So his son and I drew this son, and him and Drew and I went and played golf and got back afterwards and a meal that we've nailed. When the few that we hit every time. He was tanking afterwards, I'd be just four units. Like what is going on? Yeah, the walking and I, yeah, we're in a cart now. I don't walk into it was 101 at seven o'clock last night.

Scott Benner 42:31
Scott, why am I working so hard if I have to walk during golf?

Nick 42:36
Absolutely. You know, and we took the best golfer in town with those invited us and so, you know, us sounds like we got second place. It's like, you realize we use like we have to use one of each of our shots and we only use one of each of our shots and he he shot the other ones. And that's what we got second place. If there was any other person on this team, he would have got first place but he had to use our three shots. That's why we lost. Do

Scott Benner 43:00
you do you notice like there's your son drop with golf usually

Nick 43:05
drop out when he played for school. He did great in they have to walk actually, they can use a push cart. So he has to walk nine holes that was easy to manage like it he was freed as an arrow. He'd start dropping a little bit, drink a little Gatorade or some goldfish and he'd come right back level. Never had any issues. Basketball was a whole nother story. Luckily, I was able to coach him and we'll be able to coach him next year. practices you know, it'd be five or six minutes I'm cheering him up some more. It's funny the first game and every game honestly. His adrenaline's just spikes him like to the through the roof. Yeah. Like the head coach would be like, hey, you know, how's your doing in the game? Don't you take them out? Like this blood sugar's 350? Leave a man like he's just he's so amped up. We can't I'm giving him insulin during games.

Scott Benner 43:58
Yeah, now it's interesting. How you that does the adrenaline hit him every time.

Nick 44:04
Every game? Yeah, I mean, second he goes in. He's going straight up.

Scott Benner 44:08
Have you tried to give him a little bit for the adrenaline before before he plays?

Nick 44:13
Ah, no. Because second is done. It comes straight back down.

Scott Benner 44:18
Yeah, you gotta eat you gotta eat at the end. But you can mitigate the adrenaline a little bit if you if you Bolus for it. We actually learned that during basketball. So yeah, we figured it out. When Arden was little she played in like a little rec league. And and we were very early on with diabetes still, like, by the way, in my mind early on meant like five or six years into it. I still didn't really know what I was doing completely. And one day, my wife and I were like sitting in the stands and I'm like, Man, some days we come to this game and our blood sugar is super stable. And other games we, you know, come to shoots way up and it took us a while to figure out that Arden was pretty competitive. But then, but that she didn't see all the other girls as a threat, just some of them. So when she got to a game where she thought, like, wow, we're really gonna have to play if we want to win, she'd get the adrenaline bump. And if she saw like a bunch of cream puffs when she got there, she was like all she coasted through it. It's very interesting to figure out. So we started. It's actually kind of one of the tenants of the podcast came from this, which is people always ask, well, you know how to like when I'm first trying to learn about how much insulin I can use, and I'm trying to use extra, I don't, I never know how much extra I can safely use. And I used to say, well Bolus for a juice box. And if you need it, then great. And if you don't, then the juice boxes, basically just Pre-Bolus. And so we started doing that with the with the basketball. If we thought this was a game where she might jump up, we gave her an insulin and amount of insulin that a juice box could cover. And then if the adrenaline came, then great, then the adrenaline and the insulin fought with each other. And if the adrenaline didn't come, then she would drink the juice. And we basically just Pre-Bolus for a juice. And then we learned that after basketball that was bolused for you did have to get the food pretty quickly afterwards. You didn't have you didn't have a long time before the adrenaline went away. And a little too much of that insulin was still leftover, if that all makes sense.

Nick 46:20
That makes total sense. Yeah. Your daughter sounds like my daughter when it comes to sports. She hates the practice, only stepped up for the big games or when it matters, and then just kind of lollygag around the other times, like maddening sometimes.

Scott Benner 46:37
Yeah, yeah, Arden played pretty competitively. For softball she was when she was 12. They were two wins away from going literally to the Little League World Series. And they were in they were in Connecticut playing in like a regional championship and, and you could tell it like, it hit her heart and you had to hit back. And there was no, there's no perfect answer for some of these things. Adrenaline is one of them. Like if you're going to fight it off so that you don't have a high blood sugar. So you can perform. You just have to be ready on the backside to catch it. Like that's yeah, that's what we found. I wish there was a better answer than that. But there just isn't

Nick 47:15
really. Yeah, that's just part of you having to manage it day by day. Yeah. 100%. Yeah. But I think he he's had a good attitude. I'm praying that it stays. I know you asked it earlier, but he's had a really good attitude throughout this whole thing. And I think that's important. He's probably had a better attitude. My wife and I had, you know, you want him to have a good attitude. I'm glad he does. So he just wants to be a normal kid. He does what he has to do. We're thankful that my daughter was not the one type one because we'd be you know, she'd forget or not care or not want to do it. And he's a great kid, but she just a free spirit and a lot of ways, right? He's our diligent when like, Hey, Dad, it's school nights. 1030 I'm gonna go to bed now. You've got to tell me. She'd stay up to one the morning.

Scott Benner 48:04
How come no one's mentioned sleep. It's too. I'm getting tired.

Nick 48:08
Well, you still have to wake up and go to school, honey. I'm fine.

Scott Benner 48:12
Tell Tell me this. You find the podcast, you find it valuable. You said but your wife doesn't listen to it. Does she? Like what's that? Like? Because you use the phrase in your intake letter that is a it's something that goes through my head constantly. Like what did you say? You said? I'm finding it here. Oh, hold on a second. am I struggling found the podcast. It made sense to me. However, it took me time to convince my wife Oh, to trust that I learned something from some guy on the internet. Yeah, like that's exactly. By the way. That's my level of common sense, too. I wouldn't listen to me if I was in a reverse situation. I'd be like, I am not making a decision about this. Based on some story a guy told on a podcast. How do you get that to her? How do you say look, I heard this thing I did it. It worked. Like how do you make her kind of believe it? Especially if she doesn't listen to it?

Nick 49:03
Slowly over time, okay. And then something I'll say and then maybe one of the doctors or somebody else we know will mention the same thing. I think it just has to be reinforced by another source. Other than other than media or you know, or voting you. Please don't take it personal. Please. I just she wants everything verified and doesn't want to make a mistake. And it just that's why it's gonna go a little slower. I think in the last three or four months, it's we just realized okay, it's time we really got to get on top of this. You know, he's at school now. No more excuses. We really got to make sure he has the best care we can give them and what we were doing is not working. You know? He still has a once he's under seven and sometimes I don't know how. I just don't he sits right about 697 all the time. Our goal is to get him down closer to the lower sixes by the end of this year,

Scott Benner 50:04
did you find that you were just hoping, like, maybe this will just get better?

Nick 50:09
Did you ever have no, I knew it wouldn't get better, okay? My only thinking along those lines is that I keep hearing once he gets in this early 20s, it'll be easier to I keep getting told that, you know, his body's not changing all the times, hormones aren't quite as crazy. So that's the only knowledge I've heard. Other than that, I just hear, hey, the next three to six years are going to be hell, like, you know, once you get something going for a week or two, it's going to change. So just hang on.

Scott Benner 50:35
I don't know, it's, it's a, I get the sentiment, I understand the messaging, I wonder if people can take it a little farther and realize that if you wait seven years for something to regulate, which is a word that is meaningless, but what you're gonna do is you're gonna build bad habits in the seven years, it's not going to matter once you get there anyway, because you're going to start accepting it, like just oh, this is what it does. And, you know, you just keep accepting failure and accepting things you don't want to go it, but it'll be better in the future in the future. And I think he gets to the future, and you don't even know how to manage it anymore. I it just sucks. But it's a, it's a thing you have to dive into, you have to understand it. And once you get the basics down, like the real understanding of how insulin works, and what the different variables are, with the situations are, I think it translates to everything age, you know, hormones, weight, the whole thing, it just takes time. And it's hard to, it's hard to, to give that much time and attention to something that it doesn't feel like you're really understanding or getting any better at and it's so hard to explain to people but really like, time and effort is that's all it is. You just keep putting in the effort and the time and eventually it starts to make sense to you. And before you know it, you don't really remember that part anymore. It's just, you know, hard to hard to believe that in the in the moment, I think.

Nick 52:03
Yeah, definitely. When you're living in the moment, it's hard to see the big picture sometimes. Yeah, you got to step back and just okay, hey, we need to reevaluate. Let's just kind of put it on the table and pick one or two things that we can try and see if we can do better and get better results. I think we got his Basal rates a lot better now. Definitely use like his weight as a factors and how we calculated it. I know it's not supposed to change what's going on with the Omnipod five, but when he goes to manual mode, you know, it's definitely way higher than it was before. And he's at point seven, five an hour now. And he weighs about 80 pounds. I think it was at point five before for the last year. So

Scott Benner 52:43
yeah, that seems that seems like it might have been too low. Yeah,

Nick 52:46
I think it was definitely low. So we've adjusted that it's made an improvement. And just I'm not waiting as long to give corrections. We used to wait to the alarm went off the alarm was way too high. And so now I look down like hey, you're 180 Now let's do a correction. And it's not wait to 250 or whenever the alarm is supposed to go off. Yeah. And that's helped me too. So I think it's just going to be incremental. Okay, let's see what we can get away with. Alright, 180 was fine. Let's try out 160. Let's see then. Yeah, and use the rest of the summer to really kind of get it nailed down. That's where he gets back to school.

Scott Benner 53:19
That's the key. If you move that low alarm to 140 his day once, he'll be more like six. Now

Nick 53:24
I think the problem is right now. If he's eating he's over 140 all the time. Like he's never not over 140

Scott Benner 53:33
Is that are you Pre-Bolus eating the meals?

Nick 53:36
doing a better job now than it was even two months ago? Okay, yes. So we're still probably not quite enough. I've heard on the pod five, you don't Pre-Bolus quite as much before this, but a lot of people I think I've heard that once or twice before? I'm not sure.

Scott Benner 53:51
You know, I've heard people say that too. And I have to be honest with you. I don't understand why that would matter. I'm not I'm not I'm not I'm not sure about the I honestly, that I'm out of my depth on that right there. But it doesn't make a lot of sense to me. We're getting

Nick 54:06
a slightly more aggressive on Pre-Bolus thing. We're now probably about 10 minutes before, sometimes a little bit more than that. I've noticed sometimes that when we Pre-Bolus that we don't have to give them quite as much insulin either. Yeah.

Scott Benner 54:21
Because well, when you're when you don't allow the blood sugar to jump up, then you don't need extra insulin to fight the high. So yeah, I mean, listen, rule of thumb, I don't know, but 10 minutes seems short to me. So you're looking for a Pre-Bolus that, that if it's some sort of a regular food, meaning you're not like I don't know, having like a giant glass of like a Slurpee or something like that, like something reasonable, you know? Yep. I would say that your Pre-Bolus should hold you wherever you are. For at least the first 45 minutes. I you know, a good a good Pre-Bolus You're not going to see us bike in the first 45 minutes or an hour, and and then if you see one after that, and it goes up and never comes back, then I think you didn't have enough insulin. If, you know, if you Pre-Bolus 10 minutes you go up and crash back down, then that sounds more like the Pre-Bolus wasn't long enough. Like there's actually there's a person, some person on line who made a list of things I've said about Pre-Bolus. And I should find it because I read it. I was like, This is great. What is this? And and I asked, I said, Where'd you get this from? She goes, it's all things you've said, I just put it like, in this little like, you know, graphic and I was like, oh, I should quote myself more often. I'm like, I think this is right. But it's, there's, there's a place, right? I mean, I don't think I talked about this nearly enough in the podcast anymore. But, uh, Pre-Bolus is, if you've heard me say this, I guess you could stop me. But it's like a tug of war. And so like, if you think of a classic, like schoolyard tug of war, there's a rope. And there's a team on the left and him on the right. And we all go and both teams pull the you know, the goal is for one of the teams to yank the rope to the other side. But a Pre-Bolus is very similar. You have insulin on one side, you have the food on the other side of the rope. And, but the goal is different, we don't want one side to win, we want the flag in the middle of the rope to stay in the center. So if you think about that flag in the middle of that rope as a steady line, and then instead of thinking of them pulling left and right, kind of turn it in your head so that you know, in the insolence pulling down and the foods pulling up. Like when you see a stable line that has active food and insulin in it, that's what you're seeing, you're seeing the insulin is pulling, you're seeing that the food is pulling, but that neither can overpower one another. So as you move forward in that timeline, that middle, that rope just stays on the same plane as it began on. And then eventually, the insulin wears off as the food impact is wearing off, and everybody drops the rope and we just keep going into the future. So no one can win. Like, that's what you're trying to do with a Pre-Bolus you're trying to set up a fight that no one can win. And that kind of ends at the same time, meaning the insulin surge starts to, you know, go away, as the impact of the carbs goes away. That's a stable line during food. That's all that is. If you don't have that, then you're gonna get all the things that you've described.

Nick 57:35
Does that make sense? Absolutely. 100% Yeah,

Scott Benner 57:38
that's it. It's it's a, it's a tug of war that you don't want anybody to win. But you still have to fight it, you still have to play it out. So instead of yelling, Go, and everyone starts pulling, you tell the insulin, it's allowed to pull first, because it doesn't pull it full power. As soon as you yell go. So you say insulin start pulling, and it pulls the little bit on the rope and doesn't really move it, then the rope starts to move a little bit, a little more. And then just as it starts to get its power up, and it's really starting to yank that rope and you think, Oh, if they're gonna win, they're gonna yank it over to the side. That's when the food comes in and starts pulling back again, the food doesn't usually need some foods don't need as much time to start pulling. So you let the insulin start pulling first. And then you say, okay, carbs. It's about to get, you know, off balance here, you start pulling now. And that's sort of it. I mean, to me, that's what a good Pre-Bolus is. No,

Nick 58:34
it makes 100%. And I appreciate you saying again, I've heard you say that before, but I think especially the way our talk is going today, it's been more technical and less storytelling. And I think that's important, too. I think it just a good reminder. Here's what we need to do.

Scott Benner 58:50
Yeah, well, for me, for me that good. It's funny, I've heard you say things throughout the episode. And I can have like, if I'm not paying attention, my tendency will be well, that's there already. I did an episode about the math of your Basal insulin. Except everyone doesn't hear that. You don't I mean, so like as as you kind of keep the podcast alive. If the thirst stuff back in once in a while, remind people like go check, like, in the end, like, you know, if I kept saying the same thing over and over again every day, nobody would listen. Oddly, but if I forget to say it every once in a while, then it doesn't help anybody. So, like a weird balance. No,

Nick 59:27
no, I appreciate both sides, your podcast. I mean, especially when you try to make someone's mom blush with some crude joke. I laugh every time it's not gonna work that into my conversation.

Scott Benner 59:41
Yeah, you can't do that at your job. But I'm allowed to know.

Nick 59:46
I can't my wife was slapped me upside the head.

Scott Benner 59:51
Things need to stay light. Nikkor I don't I don't understand how you keep listening. Like, seriously, like,

Nick 59:57
I know you're 100% Correct. It needs to Have? Yes, it can't just be technical all the time, like no one would listen, you need to have some some humanity behind it.

Scott Benner 1:00:06
There's a massive diabetes organization who has had a podcast for ever before they knew they were called podcasts. Do you know what I mean? Like they were putting audio on the internet, right? Yeah. And it took them. I think my, I think what I heard recently, if I'm right, it took them like 12 or 15 years to reach a million downloads. I don't I've never listened to it. But I'm gonna guess they know what they're talking about. Right? They must send on doctors and all that stuff. 12 or 15 years to get to a million downloads. And at the moment, I'm doing a million downloads every 60 days. That's incredible. Right? And so what's the difference? I don't know. Because I haven't heard their content. But what I'm gonna guess is they're things not fun to listen to. No, it's boring. Yeah, I'm gonna guess. And so again, you could have the secret to life, but nobody listens to it on is it? If a tree falls in the woods, and nobody hears it? Did you know Did it make a sound? You know, so that's the thing, like, and that's what, that's what happens a lot in this space. To people's like, well, this is good information, like great, I put it down somewhere Great. Nobody heard it. Nobody's drawn to it, the person that somebody did hear it, they weren't, they didn't think to tell somebody else about it. You might as well not have done it. And I mean, I'm happy for anybody that's trying to help anybody. But if you make something for 15 years, and it takes, it takes that long to get a million extensively, no one's listening to it. Like you should be able to reach that number much more quickly. And

Nick 1:01:51
and I think that they're probably spending 1000s 10s of $1,000 a month on marketing or more than a dime. Yeah, I'm,

Scott Benner 1:01:58
you know, quite certain that that's a thing like that. There may be getting, if I use 12 years, they're getting at three, they're getting at 3000 a month, if I use 15 years, because I can't remember what the number is, I heard they're getting 66,000 a month. So now you're talking about a month to reach what this show does in a day. And it's just you're not going to anyway, I bring that up. Because if you gotta say stupid shit, and be funny and have fun, or no one's gonna listen. And then nobody gets helped. And then a bunch of academics just sit around and go, I don't know what's wrong with these people. We told them, You told them nobody listened. You're in a doctor's office saying something in a way that is completely impossible for people to pick up or put into practice. Like, just because you said it out loud doesn't mean you help them. Like that's not. You don't I mean? Like, because that's the case, Nick, you're a parent, it would just, uh, why don't you just carve out six hours today? Sit down, tell your kids all the rules of life and then give up because that thing you told them? They got it now? Anyway, I don't know why I get upset about that. I think it's because of the beginning of your conversation and how poorly you were. Were led in the beginning made me upset for you. Well,

Nick 1:03:16
in the funny thing is they have a million downloads, and probably most people turned it off after five minutes.

Scott Benner 1:03:22
Very possibly. It mean, yeah, that counts.

Nick 1:03:26
I don't know how y'all industry count downloads. But if you just click on it, listen to it for five minutes. Does that count? I mean, I can't tell you how many I clicked on. And like not as this guy is not for me, or this girl is not gonna work, or just this isn't the right message I'm looking for and never went back. I'm

Scott Benner 1:03:41
saying downloads, they're not that you're 100%. Right. They're not the full measure. The full measure is, is engagement. You know, the full the full measure is that your wife doesn't want to listen to the podcast, but she's still in the Facebook group. That

Nick 1:03:56
Oh, yes. You're telling me stories in the Facebook. Hey, you know, you know, whatever story is that catches her eye. And, you know, we'll have a conversation about that, that helps in our management of our son. It just she doesn't like to sit down and listen to podcast when she ever has her free time. It's not her thing. Yeah, totally fine. But I think this has helped get us on the right track. Without it. We'd still be stuck. You know, same thing we were doing two or three years ago even with a good doctor. Yeah, because we were scared like I didn't you know, I had no idea. And there was no no one explained it and I think getting past that barrier was the first step or realizing there was a barrier there and then going okay, we got to get past this barrier. This isn't gonna work. I you know, I kind of get tongue tied on it, but it's just you look back and you just can't even why did I do that? Right I could have done so much better. Yeah, yeah, second guess a bunch.

Scott Benner 1:04:54
100% I'm gonna finish up what you said here because i Something popped into my head but I Um, as far as reaching people with your ability to help them, whether it's you know, a person making a podcast or a doctor or something like that, it's engagement. Like if you want to really measure if you're helping people see how engaged they are, right, so I put a post up yesterday, I have an idea for a new series, Jenny and I are going to do it together. And you know, Jenny and I are going to kind of build a syllabus on one side. And then we wanted to have listeners input on the other side, and we were going to use those things to feed each other while we're recording. It's all kind of boring right now, don't worry about it. But I put a post up online. And I asked a simple question, with three examples of my question. And today, it is not quite 24 hours later, and that post has 189 responses. And they're not just one word, they're well thought out. paragraphs from people like Like, like, really, like well thought out responses. And if you can't, if you can't elicit that kind of response, no one's really listening. Like, that's just how that works. Like you can get, like you said, you can count your download. But if that person isn't willing to speak up and help, or if I mean, even advertising, if you put up an ad and nobody clicks on it, no, then I don't care how many downloads you have, what you don't have is engagement, you haven't really, I don't want to say the same word again. But you have not found a way to engage those listeners in a way that makes this meaning for the for them. And to translate that to doctors, it's the same thing, you ask a question, and you don't get a response. If you're not having a real dialogue during the the, you know, the meeting that you're having with your patient, you're not really connecting with them. And therefore I don't care if you have a download, which is a doctor's visit, you know, in this case, you're not really going to make a dent in their life, like, and that's just the truth, like, the problem is communication, whether it's at your doctor's office, or somebody trying to make a thing online, if you're not a good communicator, you don't know how to keep people's attention, you don't know how to give them value for their time, you're not really helping them. And then those numbers are meaningless here. It's just wasted time, in my opinion. Well,

Nick 1:07:15
I think what helps you out too, is you come across as having good energy, even though it's on a audio platform, you can just feel it when you listen to you. When you talk to somebody, you're engaged you, you're listening to what we're saying, you have good energy, I don't know how to describe it. That's nice. I'm interested in people and people feed off of energy. I mean, you'll watch one news cast over another because that newscaster has gotten better energy, they you just oh, that's got personality. They're not just sitting there reading from a script that oh, you know, got Marcus down today, and there's a fire on Elm Street. It's, they have a personality, there's some energy there.

Scott Benner 1:07:50
I really love listening to people, I like hear what they have to say, I have a very big interest in this space moving in the right direction, because there's going to be a day I can't help my daughter. And I know for sure she's going to like at the moment, she's going to end up with a doctor who if she's lucky, has a you know, a 10 Gentle understanding of diabetes. And so I'm trying to build a world where that's not true anymore. And you know, it's, and it's my job on top of that, like I'm a I'm a I grew up a blue collar person, like, this is my job, I do my job. You know, like, I happen to like it and actually be interested in it. But even on the days when I like, sit here and like I just edited myself the other day when I was sick, like when I had COVID and I was listening to an episode where I had COVID. And you can't tell like, I still love my job. And I still wanted to have that conversation with that person that day. I don't know. That's the kind of energy we need from doctors, not them doing Donald Duck voices for your kid, for Christ's sake. shake my head every time. Like I gotta tell you, it makes me want to curse. It's infuriating.

Nick 1:08:58
It's insulting to some extent. I mean, it just really is like, yeah, I just don't know. Don't do that. I mean, he was old enough. I know it was a children's hospital. But yeah, I just said we we were done. We should have been done on day one with with that group actually ran into a guy now who's on the board of that hospital and he's okay. How's your experience? Go? You got 10 minutes. And he's just staring at me. I was like, his eyes got real big. I said, Let me tell you about my experience. That's I don't I don't know if it went anywhere. Not but I said, here's here's our experience and why we're not at your hospital anymore. Not even doing won't come back. Oh, that's interesting.

Scott Benner 1:09:35
I mean, good. Good for you. Good for you, by the way for telling them. It

Nick 1:09:40
can't get any better if you don't know. I mean, it's one of my employees. You know, hey, we can do this better. If I had no clue. Yeah, I can't make it better.

Scott Benner 1:09:49
million percent. Good for you, man. That's excellent. All right. Is there anything we haven't talked about that we should have?

Nick 1:09:53
I think we're doing good. I just said I know I'm not the most interesting stories, but I really think you helped me out thinking through some of the issues we were having with Drew, and his blood sugar, and I really appreciate your time. I really do. I know you got a lot going on.

Scott Benner 1:10:09
I gotta make this podcast man. I don't have a lot going on until trust me recording a podcast every day is one of the most important things I do. The whole thing falls apart. So don't thank me for Don't thank me for doing it. I appreciate it. And don't knock yourself like you. You were very engaging did a great job telling your story like it's Yeah, I know. You're but you're thinking like I didn't tell a story of like doing heroin and being like,

Nick 1:10:32
Man, I'm sorry. I'm pretty, pretty lame when it comes to that.

Scott Benner 1:10:36
story. Yeah, his DKA didn't happen on a speedboat. Is that what you're worried about? Don't worry. They all good

Nick 1:10:42
one. No, no, it didn't. The only thing that he was eating a hot dog when this happened, and he will never eat a hot dog again, as far as he concerned like he would I don't want a hot dog. It just makes me think that day. And I

Scott Benner 1:10:55
had KFC, like a chicken tender the day my appendix burst. And I for years if I smelled it, like I was scared. Like, I believe it was weird. The way my brain put that together was like, I think the chicken tender tried to kill us, which is obviously not what happened. But it scares the hell out of me. I was just I was out one day doing a bunch of stuff. You know, I was a young, my heavyset young father. I wasn't that young. But my kid was young. And we were out running around trying to get ready to go on this trip. And he's like, I'm hungry. And I'm like, Oh, we pulled into a drive thru. And I got him like these little chicken tenders. I gave them to him. And I had one. And like, six hours later, I'm in a hospital. And I don't know, man, that that smell of that chicken scares the crap out of me for years after that. So I understand your kid doesn't want a hot dog? That's for sure. No, it

Nick 1:11:46
does not at all. Yeah,

Scott Benner 1:11:48
the only thing I'm upset with you about is you did not say anything that it's going to make it easy for me to find a title. That's, that's on you. I

Nick 1:11:56
know, I thought about that. And I'm sorry. I'm just you know, I'm trying to stick up for a couple of the debt. You know, you have like, 90% Mom's on here. And every once awhile, we'll get a dad on here. So

Scott Benner 1:12:08
I appreciate that very much. I wish more men would come on to be perfectly honest with you. They're all in they always seem to lean more emotionally available, I think as probably like a polite way of saying it. But, but um, every once in a while, like you get a guy on. He's like a real like, man's man. I'm like, This is excellent. They just like, they're not worried about what people think. And you know, they're just like saying, what they what they're getting at, I love that I can't think of the guy's name. Did out glass replacement on vehicles. I know he's gonna you'll be upset if he hears this. And I can't remember his name. But I love that episode, like so. You know, that's the kind of stuff um, I hope I hope more guys like you reach out. So I appreciate it very much.

Nick 1:12:48
No, and I know they listen. And I encourage them to reach out and it's for the betterment their own kids for themselves. And without listening to you. I don't know where we'd be right now. I really appreciate it.

Scott Benner 1:13:01
I hear what you're saying, Nick. I'm terrific. Well, we'll leave it at that. Yeah, absolutely,

Nick 1:13:05
my friend. All right, hold

Scott Benner 1:13:06
on one second for me. Sure, thanks.

A huge thanks to Dexcom for being longtime sponsors of the Juicebox Podcast. dexcom.com/juice box head over there now get started today. Arden started using a contour meter because of its accuracy, but she continues to use it because it's adorable and trustworthy. If you have diabetes, you want the contour next gen blood glucose meter, there's already so many decisions. Let me take this one off your plate contour next one.com/juicebox If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes

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#1114 Future Nurse

Kayla's daughter was diagnosed with type 1 diabtes just before her tenth birthday.

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Scott Benner 0:00
Hello friends, welcome to episode 1114 of the Juicebox Podcast

Kayla's daughter had an A one C of over 13 and a blood glucose over 1000 when she was diagnosed with type one diabetes, now Zoey is home and inquisitive about what happened to her at the hospital and dreaming of being a nurse and her mom is on the Juicebox Podcast. Please don't forget that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin. Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code juice box at checkout that's juice box at checkout to save 40% at cozy earth.com When you place your first order for ag one with my link you'll get five free travel packs and a free year supply of vitamin D. Drink ag one.com/juice box

this episode of The Juicebox Podcast is sponsored by the insulin pump that my daughter wears Omni pod learn more and get started today with the Omni pod dash or the Omni pod five at my link Omni pod.com/juice box. This show is sponsored today by the glucagon that my daughter carries. G voc hypo Penn. Find out more at G voc glucagon.com. Forward slash juicebox

Kayla 2:02
I am Kayla I am from the Midwest. I don't know what else you want to know and how you want me to introduce myself.

Scott Benner 2:08
Oh, that you're Kayla's? Good. That's a good start. Do you have type one diabetes? Or are you the parent of someone with type one?

Kayla 2:16
I am the parent of someone with type one drew me to go over her diagnosis or Kayla

Scott Benner 2:21
you don't have to ask me every time before you talk. It's okay. So how old is your daughter?

Kayla 2:30
It is my daughter My middle child actually. She was diagnosed January 10 of last year that was 20 days before her 10th birthday,

Scott Benner 2:40
Jen 10 I'm sorry. 2022. Right.

Kayla 2:44
2022 Yep.

Scott Benner 2:45
Okay, I'm sorry, right before her birthday. Right before her 10th birthday. Okay. And she's your middle. So you have older younger, how much older? How much younger? Um,

Kayla 2:54
yep, her brother is 12 going on? 13. And then the youngest, it will be nine this fall. Okay. So she's literally right there in

Scott Benner 3:03
the middle. Neither of those kids have diabetes? No, they

Kayla 3:07
know they do not. Thank goodness. That's been a paranor of mine ever since she got diagnosed. And I bet.

Scott Benner 3:14
Yeah. How about other autoimmune issues in your family?

Kayla 3:18
Not with my kids. And my husband has an autoimmune disorder. He has psoriasis and distant family on his side. Come to find out there is a couple of type one diabetics, which we did not know about until after our daughter got diagnosed.

Scott Benner 3:33
Wow. Do you know like how far back in his family? I

Kayla 3:36
would say they probably fourth cousins were kids. Gotcha. Then we're in there so well,

Scott Benner 3:43
okay. And how did you find out afterwards, you start asking around with the family? Yes,

Kayla 3:48
we started asking around and stuff with the family and whatnot. And one of them actually reached out to me while she was in the hospital and to offer support and stuff. And if we had any questions and things like that her daughter had got diagnosed, I think a couple years before ours. She's 16 or so now. So she would have been diagnosed as a teenager.

Scott Benner 4:07
No one ever comes up to you prior and says, Hey, before you make a bunch. We just wanted to let you know that. Yeah, no, no, everybody's like, it'll be fine. It'll be fine. It'll be fine. I don't know what that means. But okay, so Well, that's interesting. So you had somebody reached out who I'm assuming you're not like, very close to right?

Kayla 4:26
Um, no, it's, you know, the ones that reached out we see him at you know, that twice a year of family dinners type of thing. So

Scott Benner 4:33
Was that helpful hearing from someone?

Kayla 4:37
It was she she offered a lot of support, and I actually did reach out to her when I was setting up my daughter's Dexcom for the first time she helped me over the phone with that and whatnot. She's been pretty helpful.

Scott Benner 4:48
Nice. That's great. Okay, so how did your wife because this was obviously surprise to your family? Yes. How did it present? You

Kayla 4:57
know, looking back part of her diagnosis, there were signs that, you know, you just don't really correlate with, you never really think your kid's gonna have type one diabetes, but right before she got diagnosed so that Saturday, she played point in a basketball tournament, she had a couple games, and I helped coach and she kept coming up to me and say, Hey, I'm like, I seem extra thirsty. And I'm like, Oh, you're just playing hard game, just drink some more water, you'll be fine. And that sounds terrible, but and then I remember her hair being staticky. And I'm not sure if that has anything to do with it. But I just remember her hair being she staticky. And then that Sunday, she started vomiting and stuff. And then I was like, Oh, it's just the stomach flu at that point, you know, you still don't register the type of diabetes aspect.

Scott Benner 5:39
Sure. Yeah. No reason to.

Kayla 5:42
Yeah. And then that night, she got the bomb, and it got progressively worse and more like, forceful. And so we did the whole, like woods and all of that she's wasn't keeping anything down. And I told myself in the morning, if she still wasn't getting any better, I would take her in. Well, we ended up falling asleep for a little bit and woke up about I guess about six in the morning. She felt going to the bathroom and her face just she woke up her face was sunken in. And I was like, Well, this is not a normal. Flu. Yeah. And then she asked me, so she felt going to the bathroom. And my son was going over to school. So that was fine. I think my youngest was home, my youngest was home sick, and I can't for the life of me remember why it was a cold or something at that point you there's some details that you just don't remember. So I remember calling my mom to come get my youngest. And my daughter looked at me and asked me and she must have felt different. She looked at me and she asked me she goes, am I going to live? And I was like, Oh, crap that gets you you know. Wow, really? And she did. Like it must have felt different to her to kill like not

Scott Benner 6:49
ironically, or she wasn't trying to be funny or anything. She had a real concern for herself.

Kayla 6:54
No, yeah. Cuz she usually all of my kids can usually handle sicknesses like champs Wow. And so it just, I've always wanted it to feel different to her somehow. And so we took her into the emergency room, and within five minutes that nurses like, has she ever had any blood sugar issues? And I said, No, he took her blood sugar on she, she max out their thing. I mean, he couldn't even get a number. He said she has diabetes. My husband was at work. And of course, I call him and he came. And so her actual stats at diagnosis, she had an agency of 13.2. And her blood sugar was 1121. Holy Hell, her ketones were slightly above six, but she got transported via ambulance down to Children's Mercy in Kansas City. She was in the PICU for overnight there and stuff, they still they brought her blood sugar's down. And you know, we got to go home Thursday evening. So she went there in there Monday, we got to come Thursday evening, it was just a whirlwind. After that, you know, that four days are learning, they throw these binders at you and say, here's a four hour Crash Course crash course on type one diabetes, you know, and it was just crazy. No, I

Scott Benner 7:59
just talk today to a doctor. I'm gonna do a speaking event later this year. And I was speaking to a doctor at a hospital where it's going to be at. And we talked about that very thing about how impossible it really is to hear what's being said to you in a moment like that. And like, maybe you even hear it and you're nodding along with it, but you can't recall it later. You know, you don't mean like, it's just, it's the worst. It's the worst situation because they have to tell you something. And at the same time, you're gonna have very little ability to recollect it when you need it later, when she was right, hmm. like to ask, Am I going to live? She

Kayla 8:37
was and you know, when she woke up the next morning, I just looked at her I knew something was different than her to ask me that that just kind of verified what I was feeling in that moment, too. And it was just, it was not good. But and then of course, you know, at that point, we went down to Casey with her and stayed there. And my mom kept my other two kids and they were worried and you know, see, I've everybody worried. And yeah, it's just and then, you know, before we leave the hospital, you know, we're like, how do we know if we're doing this? Right? They're like, Oh, well, if you're not doing it, right, you'll be back here and it'll be IndieCade. And that's comforting. That's Thank you.

Scott Benner 9:17
Which Kansas City was this? Isn't there to Kansas

Kayla 9:20
City, Missouri. Okay. But you know, honestly, they were great. The nutritionist? Well, the diabetes nutritionist or whatever, the one that gave us the for our course, she was great. And my daughter even my daughter wants to be a nurse when she gets older. She's always been adamant about that. So she was even asking them questions and things like that. No, what are you doing and all of that. So I'm not I'm a note taker, even though when I listen to your podcast, I have a notebook. I'm a note taker. And so luckily, we've never been back in the hospital yet. But, you know, you leave the hospital with his information and stuff and then you start listening to your podcast and And, you know, you leave the hospital at the target blood sugar 150. And then you listen to these podcasts and stuff and you're like, 150 is not okay. And so I've been, I've been more strict with things like that after I started listening to your podcast and stuff, and it's just, yeah, cuz I remember, she got released Thursday, I used Friday to kind of get everything gathered and whatnot. And then I was dealing with some things on the family side, you know, back home that I probably can't discuss. But then she went back to school that following Monday, because she's very adamant about school and sports and her extracurriculars. And so, that Friday, I already have already set up a fiber for meeting and everything with the school. But that Monday, you know, you're still clueless because she's had diabetes for that, you know, about for a week. Yeah. And so I dropped her off at school and her blood sugar's in at 383. I'm like, This can't be okay. I'm like, do I get more insulin? Or what do I do? You know, I just, and But thankfully, we got everything ironed out and stuff. And I've learned a lot listening to these podcasts. And, and honestly, I've probably managed it off of more of this than what the doctors even told me. I go into endo quaintness. And he's like, Do you have any questions? And I'm like, No. And he's like, Well, I'm looking at our charts and everything, because I have nothing, because I really have nothing to say to you.

Scott Benner 11:25
Okay, can I buy $40? Back then, please? Yeah,

Kayla 11:29
yes, exactly. I'm just like, why am I here that every format, but you're

Scott Benner 11:34
not going to offer anything. I would like to suggest you just send me the prescriptions, and I'll take care of the rest. That's Yes. No, that's I mean, it's great that you found a rhythm already in a year, did she adjust well to it, or what was the first couple of months like for her, she

Kayla 11:50
jumped right back into things. So like I said, she went back to school that following Monday, and then she went back to basketball two weeks after diagnosis. And then we were already on the Dexcom, like, a weekend. So that made me feel more comfortable with things like that. She already went back to math team for StuCo meetings, she was super secretary at that time, she went back to attending the youth group every other Wednesday night. We also had her birthday party, January 30. And she was gathered under table with her friends, you know, letting them practice taking her blood sugar. And, um, just as she gives herself her shots and stuff, and so I think she adjusted? Well. I mean, I noticed towards the end of this school year, she got significantly more stressed out with having to leave the classroom to take corrections when needed, because she doesn't like to do her shots in front of anybody. Okay, so we did have kind of an issue with that she's so afraid of missing out on something. And so that's kind of an issue that I think we're still gonna be working into on the next school year, to be honest. Because she won't do a pump. I don't she tried the Omnipod doesn't like the bulkiness of it. And we haven't tried the T slim. But if she doesn't like the bulkiness of the Omnipod. She's not gonna like the T splines. So

Scott Benner 13:05
yeah, well, I mean, if she's willing to do all the injections, I don't see what the problem is. What's the thing that happens in school, you say she doesn't want to miss out or she doesn't like doing it around people.

Kayla 13:14
She doesn't. Both of them, she doesn't like taking the shots in front of other students. And she doesn't like leaving the classroom, she's afraid she's gonna miss out on instruction or something. So that's when she has to take a correction. That's almost kind of an issue. So I noticed she'll kind of ignore my text for a little while because we we text in school and stuff. I've got the nurse on her message thread. And so we all kind of are on the same thread. You know, it's we're all on communication and stuff. And and so I've

Scott Benner 13:44
how does that how does that manifest as an issue? Does she ignore texts that she just slow walk going to the nurse or how does that happen? She

Kayla 13:53
doesn't ignore them essentially, she'll eventually message me back if it's I know she doesn't ever ignore low. But when she starts to run a little bit high, and see I've got my Dexcom, I've got our Dexcom alert set from 75 to 140. And if she starts to run a little bit high on Messenger, you need to take your correction, and I'll let it go for a little while, depending on how high she's getting. But there's been a couple of times where I've had to call the school and say Hey, can you go pulls away? And but then she'll typically message me if she's in the middle of a test or something. I'll kind of let it slide for a little bit. But usually she tries to finish what she's doing before she leaves the classroom to correct Yeah. And I've told her I said, That's okay. Sometimes I said, but sometimes it's, it's not. And she's going into the middle school next year, which is our elementary, middle school is separated. And so I don't know if it's gonna be more of an issue or less of an issue going into next year. It's gonna be a whole new ballgame, essentially.

Scott Benner 14:50
And in that scenario, like she wasn't comforted by the idea of pushing a button on her pump and not having to leave the room.

Kayla 14:58
She was and we've talked to about it. And I had almost got her convinced to try the Omnipod again this summer simply because she wouldn't feel like she had to leave the classroom and stuff. Right. She just I don't know what it is. She just doesn't. Doesn't want that other thing on her body. I don't know.

Scott Benner 15:16
I mean, fair enough, you know? I'm sure she will, if she, you know, decides differently. I'm sure she'll let you know.

Kayla 15:26
Yeah, but see when she's at friend's houses or grandparents or something. I mean, she does it. She does it all without complaining. It's just school. She did not like to leave the classroom. Yeah,

Scott Benner 15:35
both interesting. I would have like given anything to leave my classroom.

Kayla 15:42
She is very particular about trying to get those straight A's and

Scott Benner 15:47
Yeah, well, very nice. Good for her. All right. Well, then, I mean, it's not that big of an issue. I would imagine her it sounds like her management is going well, right. Yeah,

Kayla 15:54
it's going it's gone. Well, so a month after her diagnosis. So by her first appointment, we went to her appointment there endo three months after diagnosis. He was like, you know, he goes I'm sure because I don't think you've probably experienced illness and stuff yet. And I was like, Oh, heck one month after diagnosis. I said all three of our kids went through influenza A the stomach flu and upper respiratory. All within a month. So I was like, we've got that down pat. I know influenza A and upper respiratory ease for ketones tend to run higher. She needs more insulin, stomach flu. She needs less. And I'm like, we've got it. We've got it down.

Scott Benner 16:30
Yeah. Little trial by fire. You got a little bit of everything there in the beginning. Yes, we did. How about how about a honeymoon? Was there any honeymoon to speak of? I mean, doesn't sound like it with what our blood sugar was when you found out but

Kayla 16:43
you know, I? I still don't know. And I've asked myself that, you know, a few times like she honeymooning, or I honestly still can't tell you if she ever honeymoon because I don't ever feel like there's been a flipping point where she's required more or we're not right, because she's still just on. She left the hospital on nine units of insulin a day for her basic bar. And she's still only on 14 units. And it's fluctuated a little bit. Yeah, but but not a lot.

Scott Benner 17:13
She's 10. She doesn't get her period yet. I imagine. No,

Kayla 17:16
no. Nope. And I'm not not looking forward to that. No,

Scott Benner 17:20
trust me. There's a number of reasons you wouldn't want to look forward to that. Some of them you've lived through and are aware of how she looks just like you by the way. I'm sorry to stalk you online. But you and she looks so similar. It's it's really something do you Yes. You see that?

Kayla 17:39
Yeah, I get I get to I see. I personally think she looks more like her dad. But I do get told a lot that she looks like me. So

Scott Benner 17:45
your son looks like your husband. And, and the little ones a mix.

Kayla 17:50
Like him too. But we will stay out of

Scott Benner 17:55
the little one seems like a mix. But the daughter that we're talking, she's got your nose and your eyes and your mouth and like everything. So yeah, that's crazy. Yeah. Very cool. Is that your husband's hair color that they have. So,

Kayla 18:09
so No, his is more of like a dirty blonde. And so, back when I was pregnant with my son, he got reconnected with his biological father and we walked into that family reunion and there were redheads everywhere. And I looked at him I was like, oh, no, and not that there's anything wrong with redheads. But I never suspected that we would have a redheaded child. And I know, there's redheads on my side of the family. But I ended up with two redheads so

Scott Benner 18:36
adorable. Don't worry about that. Yeah, so Okay, so what makes you want to come on the podcast? What? What made you reach out? So

Kayla 18:43
basically, the podcast is just helped me a lot and whatnot. And I just, I just wanted to reach out and let you guys know that and stuff. And it's really honestly like even her illnesses in her first month after diagnosis. I mean, I specifically look for episodes on illness in your podcast and listen to them. And I just

Scott Benner 19:02
Well, you're a good person to ask, Hey, I didn't mean to cut you off. But no, you're fine. Yeah, we do this thing in the Facebook group, right? People ask questions. And there's a group of experts in the Facebook group, which means these are people who are interested in helping and have an understanding of like, what's inside of the podcast when there's so many episodes. It's kind of hard to keep all straight. And they come in and they answer questions like people say like, I have a question about this. They'll say there's an episode about that right here. And so you were doing that you're using the podcast when you have questions. I'm very interested in how that worked for you like you just did you go online, dig them up? Did you ask it and Facebook then how do you find them and then how did you put them into practice? In 2015, I needed support to start making this podcast and Omni pod was there. They bought my first ad in a year when the entire podcast got as many downloads as it probably got today, um, the pod was there to support the show. And they have been every year for nine seasons, I want to thank them very much. And I want to ask you to check them out at Omni pod.com/juice box. If you'd like to wear the same insulin pump that Arden does, all you have to do is go to Omni pod.com/juice box. That's it, head over now and get started today. And you'll be wearing the same tubeless insulin pump that Arden has been wearing since she was four years old.

Kayla 20:32
So I would just go on the Juicebox Podcast, Facebook group, the Facebook group, and hit search and I would type in like a keynote of what I wanted to search, I would just go and start going through the threads and finding an episode. And that would go to the episode and listen to it. So even so I knew there was one day a birthday party was coming up with like a bounce house and cake and all of that as like I'm gonna go find an episode on like jumping and things like that. So I actually listened to like the trampoline episode, the variable. And I applied that to the bounce house. And we've been and I've just I've listened to all the variable kind of episodes and because we do a lot of like hiking and stuff on vacations, and I've noticed even with sunburns, she spikes a little bit. When we vacation. I've got family back in Wyoming when we went out that way, and it's a little bit high of a higher altitude. I noticed her diabetes actually did supremely wonderful on vacation. And I don't know what it was, I can't tell you. But it was the best time that her diabetes acted was when we were up in the mountains at my uncle's cabin, She even ate full fledged spaghetti and I was like she is gonna spike. You know, and she she was wonderful. So I don't know if that's got anything to do with anything. But yeah,

Scott Benner 21:43
at elevations people report needing less insulin. So if you had great outcomes, my guess would be that she was getting more efficacy out of the insulin she had going, which might indicate that what she has when you're home might not be quite enough. So that makes sense. Do you think she ever thought of it that way? But yeah, that's why I'm here kill. You tell the story. And then I think of it a different way. You understand? I never thought of it that way. Yeah. So that that would be my

Kayla 22:15
She did great on vacation. So yeah, that that makes sense, actually,

Scott Benner 22:20
was she and I don't because I My first guest would have been had you not mentioned the elevation. My first guest would have been well, maybe she was more active on vacation. But she plays basketball. So she already is pretty active. So that's what made me go past that and think about the elevation instead.

Kayla 22:33
Yeah, cuz she plays basketball, soccer and, and all of that. So yeah,

Scott Benner 22:38
so it's not it's not a lack of, it's not lack of hydration. It's not a lack of running around. She's doing those things. Yeah. So my thought would be if at elevations, you get more bang for your buck from your insulin, because what you usually hear is the people who live at elevation use less insulin. But in that case, then what you learned was your insulin was more powerful, but you weren't having lows, you were having better outcomes. So then I think well, maybe, maybe then maybe some of your settings need to be adjusted. I never thought of that. That's how my brain works on that one. Anyway, let's get back to how great the podcast is. My gosh, bing, bing. I'm gonna get incredibly serious here for a second. I apologize up front, because you just got done working right. You worked like a full day. And now you're doing this in your car. Yes, I

Kayla 23:29
work Monday through Friday, eight to five. Oh,

Scott Benner 23:31
well, thank you. I appreciate you very much. sitting in your car for work and making a podcast with me. I am not having a great week, my mom has passed away. And, and please, it's not why I'm telling you that I'm telling you that because I've not had a great week. And I didn't record a whole lot this week. Only when I needed to. And just to hear somebody talk about this thing that I made and how it was like accessible and valuable, made me feel good. And I haven't felt good in a couple of days. So I appreciate that very much.

Kayla 24:02
Well, that's that's good because they're, you know, I've I've even reached out. So I used to work with this guy and their kid was diagnosed with type one diabetes actually a couple months before Zoey. And I reached out to her and I was like hey, there's this wonder I don't know if she listens or not sickbay there's just wonderful podcasts and stuff and you know, I went into not my first endo appointment but my second endo appointment and I did have some issues with the school, which I can get into that a little bit later. But I went into that endo appointment and I said hey, I'm like this is what I need on my papers to give the school I said I want corrections above so I think that point they were still saying don't correct until you're oh my gosh, I want to say I was like 175 or something like that. I was like I want corrections on the paper I want to stay stayed above 140 And I said I want it to stay this and this you know because according to this papers it was like give 15 grams of sugar for are low. Well, obviously 15 grams is way too much, in most cases, to be honest. Right? And so the school is wanting to give her so many like 1015 Skittles, and that would shoot her to the stratosphere. And so I mean, I, I literally probably about every concept I apply, I have learned from the podcast versus the doctor's office. Oh, so thank

Scott Benner 25:23
you. That's really great. Yes. I mean, I'm not gonna lie to you. I needed that. That's good. Thank you. I appreciate that very much. So I felt weird about oh, I'm sorry, you have something else to say? No, you're

Kayla 25:35
fine. I was even going to say she ended up towards the end of last year. She ended up having to go to KU. It's in Kansas City as well, to gets she had a camera boys called he, he may angioma. Might have to correct me if I'm wrong, but she had a tumor of blood vessels in our hand. And so when we went to the doctor here, where I'm from versus a smaller town, he's like, I don't, because I can't tell you what that mess in her hand is because I'm gonna send you on those specialists. Well, that's when we got transferred to ku bazille. He was sitting there and he said, The wants to make sure it's not, you know, double check and see if it's cancerous and stuff like that while we're walking out. And my Dexcom starts beeping and she's angled up. And I could tell she was stressed about what the doctor said. We get in the van and she starts crying. I'm like, he should not have said cancerous in front of her. I just but it turned out she just got sclerotherapy. It wasn't cancerous or anything like that. And she's all good now. But so that was my first they kind of put her to sleep for it and everything. And Katie was great about it too. But she's not the only type one diabetic they've dealt with, obviously. So that's, that's clear and good. But I actually you got an episode on something about emergency room visits and kind of things like that. I listened to that before specifically went into that appointment.

Scott Benner 26:55
I love you, you're the best. Thank you. By the way, everyone listening should listen to the podcast the week here with us. It's a by the way also, I thought you said Chuck man, Joan a minute ago and I was like, That can't be right.

Kayla 27:06
He managed him angioma it's like a tumor of blood vessels. Okay, so what they did was they just went and they injected her with this huge needle of stuff to basically kill off the shrink the blood vessels and her tumor. sounds really weird and kind of gross. No, that's

Scott Benner 27:22
amazing that she She did great

Kayla 27:25
and KU gave me updates every so often ever blood sugar why she was put this you know, put asleep and things like that. So and then actually while I was sitting in the waiting room for that, because I switched jobs to I worked in insurance before this, what I do now and so I'm sitting there in the waiting room, you know, still paranoid about her, but so comfortable. And my new boss is like, you know, he goes I need a picture of your driver's license and stuff like that to get you started. And I'm like, okay, cred you know, I just had a lot going on and I started a new job and all of that as well. So

Scott Benner 28:00
I'm just fascinated that I know who Chuck man God is but I don't know any of his music. How is that possible? How would I know a person's name but not their work? Is that a name? You know? It's not it's not you live in the military. I don't know what gets you people you get you can eat seafood there Right? Like it has we do have safe. Well, where would you get it from? It doesn't make any sense to me. It's too far from the coasts at

Kayla 28:26
the restaurant or the store. I'm sure it's not fresh. I don't eat seafood. I can't stand seafood. My husband loves it.

Scott Benner 28:31
I'm gonna guess it's because you've been buying it in the middle of the country. You really should just go west or east and then get some for yourself anyway. I'm just not sure what makes it to you as well. Um,

Kayla 28:40
so the only seafood I've ever tried is dishing out a farm pond and you know, skin and crop in for I ended up.

Scott Benner 28:45
I don't mean like fish out of a pond. No, no. What is this? What

Kayla 28:50
is this? Oh, yeah, no, my husband likes crab and all of that. And

Scott Benner 28:53
we gotta get we gotta get you guys to a coast. Okay. Is there? I know how everybody works. All we need is a basketball tournament in Maryland, and you'll be all set. And I said go to Maryland have some seafood, you'd say I can't do I can't afford it. And if I said oh, those there's a basketball term for your daughter. Yeah. Oh, yeah, we should definitely go. I've been to some places because of baseball. And I get there and I'm just like, Where the hell are we? Like, where are we? Why are we here? Why are we doing this? Oh my gosh,

Kayla 29:26
I I feel that we live in a small town. And so we have to travel a lot for you know, my son's in football, basketball and track. My daughter this upcoming year, she'll have more sports opportunities. So she's done. She's already had basketball and volleyball camp this summer. She'll be in soccer and all of that so we actually have to travel quite a ways I remember leaving work at five o'clock and making it to his track me like right as he's running his last event or something. Yeah, and I mean, they're over an hour away just to go to the sports events. Like how me crazy I'm gonna

Scott Benner 29:57
give I'm gonna give everybody a great piece of advice. Give me two minutes. Okay. If you take insulin or sulfonylureas you are at risk for your blood sugar going too low. You need a safety net when it matters most be ready with G voc hypo pen. My daughter carries G voc hypo pen everywhere she goes because it's a ready to use rescue pen for treating very low blood sugar and people with diabetes ages two and above that I trust. Low blood sugar emergencies can happen unexpectedly and they demand quick action. Luckily jeuveau Capo pen can be administered in two simple steps even by yourself in certain situations. Show those around you where you storage EVO Capo pen and how to use it. They need to know how to use Chivo Capo pen before an emergency situation happens. Learn more about why G vo Capo pen is in Ardens diabetes toolkit at G voc glucagon.com/juicebox. G voc shouldn't be used if you have a tumor in the gland on the top of your kidneys called a pheochromocytoma. Or if you have a tumor in your pancreas called an insulinoma. Visit G voc glucagon.com/risk For safety information. And if you if your kids already older, you probably got ripped off like this and you don't know it. So one year we're told we have to go to Atlanta, Atlanta, yes. And there's a baseball tournament there you have to go there because all the college scouts are going to be there and bla bla bla bla bla, and you have to use this specific hotel. So we all go to the hotel, which I'm going to tell you seemed really overpriced for what it was. And it was dirty like to the point where when Colin I got there, the first thing we did before we unpacked was went back out and bought cleaning supplies and came back and we cleaned the bathroom ourself before we even unpacked our clothes, like that was the condition of the room. And these are the two boys, you know what I mean? Like, we're like, I'm not getting in that tub. So that's the level the room. And then the next year, we head back and they tell us again, we have to go to this hotel. It's for team unity that I said, and I was like, this is both. So I looked into it more. And what I learned was that the baseball team was getting a cut of the hotel rooms. So they forced us to go to the same place so that they could get a cut. And then they would say if you don't use that hotel, your kids might not play like they literally strong armed you like that. So we went down there and Cole and I went to this much nicer hotel for less money. Cole played by the way that wasn't a problem. It was all all BS. And I'm going to count on my fingers. I apologize. 1718 1920 27 years later, my son ends up moving to Atlanta for a job. And we go to visit him. I randomly pick a hotel online, and I walk in and I go, Oh, this is the hotel that Coleman I went to the second year when we refuse to go to the crappy hotel. It was just such a weird moment. Like I walked into the lobby and I was like, I've been here before. And then I had this whole like baseball memory thing. And then it made me think of how they ripped us off of the hotel room, which is why you're now getting told that story. So anyway, they're always photograph. Don't worry, and I'll go over it again. You're either a player or a check. If you don't know which one you are, you're check. That's it. 100% Don't ever like Go with your gut constantly. If you think we're being taken advantage of you are being taken advantage of. So yeah, I agree. That's it anyway, basketball. Hmm, is she going to be tall enough? Can we get some college money out of this? Or is this just a fun thing?

Kayla 33:49
Now, you know, I think this is just a fun thing. She she's always had her. Her heart set on becoming a nurse and then she wants to do like selling and stuff on the side. She's She's it sounds really odd, but she loves painting and stuff too. She's actually a really good artist. Which I've got a picture obviously I can't show you right now. Maybe I can send it to you or something. But she's got this picture. She's painted. That looks really good. But yeah, she's she's always been adamant out. She wants to be a nurse and she's sticking to her guns on that so far. So I guess we'll see what happens in the future. But

Scott Benner 34:26
I was pretty sure my daughter was going to be a pre law student and in stead she's an art school. So you never know what happens, I guess. Yeah, you don't? Yeah, no, it's still I felt good for her. Yeah, and by the way, doesn't mean she couldn't play a little softball in college. And even like, Don't disregard like a nice d3. Whereas we're a shorter white girl could get on the court a little bit and still make a little money. A little money for school. Nothing wrong with that. Nothing wrong with that. Tell her get out there make some money. I

Kayla 34:57
keep I keep telling her you know she just played elementary Basketball. She's just going into middle school. I keep telling him like you need to be more aggressive. Don't be afraid to you know, get in there and just get at it. You know, I remember playing basketball back in eighth grade, I have a girl pulling my hair. I'm not telling you to pull anybody's hair, but definitely

Scott Benner 35:12
a girl. Yeah, definitely give her a little bit aside when she goes for the ball a little slower.

Kayla 35:17
She's too nice. And I just think that's where she's not gonna succeed in, in sports.

Scott Benner 35:23
I honestly, it takes us like two more years. And then that all goes away. Like I know, like, the girls were still worried about each other back then, like I watched it too with Arden played a lot of softballs a young person. And when they were younger, if somebody was like, I don't know, like, not get hurt badly. But you know, something would happen. All the girls would almost stop like a bunch of little moms. They're like, are you alright? And then they hit a certain age. And when that happened, they were like, keep going. She's hurt. So it goes away pretty quickly. That nice thing, although I'm waiting for it to come back with Kelly, I think it will. She's almost 50 But I think she's got a nice back up anytime now. What do you think? Are you Yeah.

Kayla 36:11
I don't know. Now my youngest, she's, I wouldn't have to worry about her. You know, being aggressive in sports. She's, she's like a mixture of it all. I don't even know what she is yet.

Scott Benner 36:23
So, so tell me, tell me a little bit about your goals. So I know where you're, I know what your your range is, which is terrific that you're keeping on CGM, by the way using a Dexcom or a libre Dexcom

Kayla 36:33
G six, she actually tried the g7. But she kept losing data signal. She's got a habit of leaving her phone in like one room and trying to go throughout the house, while her range isn't as far with the g7. Right. So she went back to the G six for the moment. I mean, I told her I said eventually, I'm pretty sure they're probably going to stop producing the G six. So you're gonna have to do the g7. At some

Scott Benner 36:54
point, I would imagine I don't think right away. I mean, obviously, they have their business arrangements with a lot of these like tandem and Omnipod. But tandem and Omni pod are like, this will be a little little incongruous with actual time, but you're starting to see them talk about G seven for Omni pod five G seven for control IQ, like they're obviously working on it and getting pretty close to bring it out. I have to tell you Arden's been using G seven for a couple of months now. And I haven't seen any disconnects, like so I don't know if that just means that Arden is like tied to her phone differently. But I haven't had a problem with it. Like she's been at college and home ball. She's using it so far. And I haven't seen anything like that. So I don't know, like how it goes. I also don't know that they don't find too in the them a little bit after they're out in the world. Like this is my supposition. I don't know anything. But I think sometimes, once they get out in the world devices, not just saying CGM and they see they get the return date on what's happening. They do have the ability to adjust them a little bit. So I always think that to maybe, you know,

Kayla 38:06
it's common. Yeah. And, and she actually mentioned that she goes, I think I might want to wait a few months to try it again and see if they make any changes. It's like, okay,

Scott Benner 38:14
I mean, it's much smaller, super easy to put on, like the warmup period thing is, what 30 minutes, and sometimes it doesn't even last 30 minutes. You can I don't know if you got to use it enough to do the overlapping. But that's amazing. You know, I told Arden about that upfront. And she's like, I'm not doing that everything I tell her. She said she's not doing by the way case, you're wondering what you're in for the last 10 years. But now that she's home, I'm like, Look, just try it. I'm like you're on like the g7 is going to run out in like six hours, like put the other one on now. And just leave it on for a couple of hours. And then whenever you think about it, just go in the app and switch it over, and then tear the old one off and throw it away. A there's no warm up because the warm up happened while you were still getting data from the old, the old one. And it's also soaked in a little bit. So it's more accurate when you turn it on. It's fantastic. Like what a what a what a great little improvement, you know, really cool, actually. So you shall get there. She thought a pump was too bulky or she didn't want to wear two things.

Kayla 39:14
She thought the Omnipod was too bulky. Okay, and she's had a couple of instances where the Dexcom has ripped off. So one time her and her brother were actually wrestling around in the front yard and he accidentally ripped it off, which it hasn't hurt her when it's ripped off, I guess. But she read houses a lot. So and I don't know if that's part of it. Maybe.

Scott Benner 39:34
And she it's new to her as well. I mean, honestly, at some point when you show her, if you put this on and this on, it's going to make decisions about your insulin for you and we're not going to like we won't that when your blood sugar starts going up the pump will bring it back down again. But that might change your mind a little bit. So and

Kayla 39:52
I predict, you know, going into this school year where she's had a lot more sporting events, you know, without me and things like that. I'm pretty that she'll eventually come to a point where she's gonna come to me and say, hey, I want to do the pump. Yeah, cuz she's gonna realize it's a lot easier when she's out of those games and things like that and practices and stuff to manage with the pump versus, you know, the shots still

Scott Benner 40:13
nothing wrong with it happening in her time. You know, let her let her come to it on her own. I think it'll be easier in general, if it's a decision she makes herself.

Kayla 40:23
She's taught her friends how to give her shots. Her brother and sister she taught how to give her a shot. Yeah, well, it's like you're more brave than I am.

Scott Benner 40:32
Oh, you just don't think you'd there's some people you wouldn't let stick you with the needle? I

Kayla 40:37
would. There's no way. No way in. Heck, I would let my eight year old child shoved me with needles. So she's a lot more brave than I am.

Scott Benner 40:47
Where she just hasn't been through enough to know not to trust those kids yet. That's very cool. So I got them, sir. Nope,

Kayla 40:56
you're fine. I was gonna say I remember the first time she stayed the night anywhere because she's usually the kid where her and her friends. I mean, during the summer, they're always at each other's houses. And so the first time she ever stayed the night, so that actually that summer, she really didn't stay the night, much of anywhere, which I think probably got to her a little bit. So the first time she actually did say that I was at her friend's house who doesn't go to our school anymore. She's goes to a different school now with her with a family that they live with. She stayed the night there. And I trust this couple. I mean, they've got a ton of kids. Plus, they're raising these other three kids now. Both their parents died in car crashes a year apart. My daughter was really close to that family and so that those were terrible funerals. And that was just a terrible time. Yeah. Her friend was in the accidents as well. And there was one point all we knew was that she had a brain bleed and they ended up messaging and FaceTiming every day while she was in the hospital and that friend did the same for her when Zoey was in the hospital and it's just been a lot. I remember I went to pick up Zoey the next morning and she actually called me Zoey started beeping lo about it was about three in the morning. And I waited. I told myself I was like I'm gonna wait five minutes and then see, well, she ended up she texted me she goes I'm on my way to her. Now she goes, I've got this. It's like okay, perfect, you know, and she straightens out and everything and the next morning I go to pick Zoey up and and she had corrected it with an applesauce pouch because Zoey is a very hard sleeper. I mean, I tell her to open her mouth and all I do is pour some stuff in our mouth and she swallows. It sounds terrible. And I'm like you need to learn how to wake up when you move out which is gonna be a while but she's like, I went to take Zoe's blood sugar just see what she actually was. And she goes I couldn't get any blood to come out. She goes some squeezing on her finger then she's like I finally just said screw it and just went to go open the applesauce Pasha but some of them out. But she goes, then some squirted all over her arm. She goes, then I think she because at that point, so we just shut up and woke up. And she goes, I had to do it all around, because I don't know how you do it.

Scott Benner 43:06
Well, to alleviate one of your possible concerns. i The only thing I was worried about when Arden left for college was that she wouldn't get up in the middle of the night if she had to. And I mean, I was like really concerned. And it was never a problem is really Yeah, absolutely fantastic one she knew it was her job to do. She just did it. And to show that it's a semi conscious decision that she made. When she can't, when she comes home for a break, she gets home and the first thing she says to me is like, you know, you're gonna have to like wake up in the middle of the night, if I get low. Like, like, I'm here, I'm home to rest, like I'm here to sleep. I'm not here to like, I'm not taking care of myself in the middle of the night. So it's, and I'm not going to tell you there weren't a handful of times where I didn't have to wake her up, like there were. But there were more times where I was I would text and say like, Hey, I you know, I don't know if you see your low and because I took care of it already. Like and it was like three, four o'clock in the morning a couple of times. So she was getting up and taking care of herself. And it was really kind of heartwarming. And at the same time, if I'm being completely honest, I'm telling the full picture. I also felt bad, because what it feels like to me is that she made that the same decision that we all make, you know, his parents, like I'm not going to I'm not going to sleep as well because of this and I'm just going to be okay with that. So I feel bad that that she had to do that and that obviously that's going to be her life. But I mean, I don't want to say it is what it is but there's no getting around it and so yeah,

Kayla 44:48
and that's that's one of my worries when she gets older and obviously it's inevitable she's gonna move about that's always been in the back of my mind. And there's you know, there's other things when your kids get older too that are in the back of your mind on how gonna affect their future and all of that, but I try not dwell on it anymore.

Scott Benner 45:04
It's good advice. But

Kayla 45:07
I'm like, you know, we're just learning to live with it. And honestly, it hasn't held her back at all, except there was one instance after volleyball camp just a few weeks ago, all of the girls up and decided to go to one of the grandparents house to have a pool party. Well, I was at work. And so my mom, the kids, my mom was supposed to go get her from volleyball camp and stuff. And so I didn't find out anything about this. And so I went to pick her up from my parents house, you know, after work and everything and, and then she seemingly breaks down and starts crying. And I was like, what, what's the matter? Then she comes out and tells me that all the girls decided to do is swim party at her grandparents house. And she? Well, for one, she's like, I didn't have my swimsuit with me. And I was like, well, we would have figured that out. Like, I'm sure grandma's got some, you know, and then she goes, I didn't think you'd let me go. Said what? And she goes, I didn't think you'd let me go. And at that point, I was like, I'm like, we would have Grimm. And I would have figured it out for you to go on it. You know, like, I don't want you to ever feel like you can't go participate in those things. Just, you know, because of your diabetes. I said, that's not the case. And that's the first time she was ever approached with a situation like that, where it's been a spur of the moment type of thing. Yeah. So she was actually really upset about that. She was the only volleyball girl that didn't go and I said that stuff comes up in the future. I said, message me your grandma. I said, we will figure it out. I said, I really I said, diabetes should not hold you back from that

Scott Benner 46:40
it has that happened again, as she handled it differently. Nothing has

Kayla 46:44
happened again since and I think after I told her that she she was better and everything. But part of me has that mom guilt to like, what have I done to make my daughter feel like I would say no. Oh,

Scott Benner 46:55
no, I was gonna say that's where I was headed next, Kayla, like, but it's not that not that you should feel like, Oh, what have I done that made her think that? I just thought, but that is in the back of her mind. Like when that came up. And everybody else is like, oh, yeah, she's thinking, Oh, I have diabetes. We're not ready for that. We're not prepared. I probably can't do it. And I know that it's it's an unbearable thing. Like as a parent to watch happen. I listened the other night. Arden had her period and her blood sugar's were, like, difficult. And somebody got food. And I know she was hungry. And somebody said, Hey, I'm gonna order I forgot what they were ordering something and Arden's like, No, I'm okay. But I knew she was hungry. And so I said, are you just not eating because your blood sugar? And she's like, Yeah, like, she's like, my blood sugar is too high. I can't eat right now. And I was like, Okay, I said, Well, we could push it really hard, and, you know, order some food and just, you know, bring it in. And then she was just like, now it's okay. But that's not what she meant. She didn't mean it was okay. She meant now this is socks, and I just don't want to think about it. So it was I know what you mean. sucks.

Kayla 48:01
Yeah. And I've ran into that situation with her a few times, too. And one was actually she wasn't high or anything. She's actually running really great numbers. Is that a birthday party yesterday? And I mean, they're obviously there was cupcakes and whatnot. And I said, I asked her, I said, Are we destined for a cupcake? And she goes, No, she goes, I don't, I don't want one. About 10 minutes pass. And I was like, I'm not trying to pressure you as a diabetic to eat a cupcake. I said that I see the look, you're given these cupcakes. I said, Are we dosing for a cupcake? She's like, No, I'll be fine. As like, that's like, that's not you know, like, I can tell that's not the answer you're wanting to give me and I said what about half of it? I said again, I'm not pressuring you. And she goes, I said, if you want I said we can just do I was like I told her I said, if you want we can just do a crap ton of insulin right now instead, and as you start to go down, you can nibble on your cupcake. She's like, Yeah, we'll do that. So I push I think it was like three and a half units of insulin with what her ratios are. And as she started to go look she's playing outside to I mean, they live kind of they've got like a ditch with some woods on the back of their property that my kids go plan and so she's down there playing everything and then I messaged her and like alright your angle Danna come up and have a few bites you come up have a few bites and she level out and then she'd go play again and I mean, it took maybe it taken you know, 45 minutes an hour to eat her whole cupcake but eventually she did and her numbers ran perfectly but so I could tell she wanted that cupcake. She just didn't want to end up going high or anything. I'm like there's ways we can do this. So you don't go high. You just may not be able to shove it on your mouth like these other kids.

Scott Benner 49:49
These monsters that are just like and then running away. You don't and better to eat it. Honestly better to eat it a little more slowly to begin with. Right like yeah, We all should probably be doing that. So Oh, good. I'm glad. I'm glad she didn't just keep saying no, it's it's good to know that she did. She's like, Oh, I work with us. And it was nice of you to stick with it too, and to notice how she felt, and not to just go, okay, she doesn't want it, then never think about it again. Look at you, you're good mom, Kayla. I,

Kayla 50:20
I try sometimes the kids try my patients. But I do try.

Scott Benner 50:24
Oh, there's a ditch behind your friend's house, you can push them into if there's a problem.

Kayla 50:30
You know, there's, if I would have seen this board to begin with, I think there was like an old flimsy two by four that was laying across the ditch to connect to properties. And the kids would cross out all the time. And my husband's for anyone that lives on the property. He's like, I built them an actual bridge, you know, so they wouldn't have to cross that two by four. And then I saw the board. I'm like, if I would have known they were crossing that, like, they wouldn't ever been allowed to cross that to begin with them. Like they're lucky, nobody ended up hurt.

Scott Benner 50:59
There is a creek that ran behind where I lived when I was younger. And we had to, like get over it to basically avoid a 15 minute walk to somewhere. And you know, in my mind's eye, this creek was running like, it was a lot of water. And it was deep. And we would like jump from logs to rocks. And like, you know, this whole thing. And I went back as an adult. And I looked down there and I was like, I is this even like a trickle, like what's going through here. But in my mind's eye, it was just a river that ran through there. So anyway, it's a it's fun when you're a little doing stuff like that I'd rather run across the board tooth, and then the bridge probably, you know, like, gosh, well, do you you said earlier, you were concerned about your other kids? Have you done trial net or anything like that, to look into whether they have markers,

Kayla 51:50
you know, I I get paranoid about them. And maybe it's I've never had anxiety before, but I think I have anxiety now. And so if I noticed the kids drink in, like an extra amount of water or something or like, one day, I'm picking Connor from basketball practice, and it was actually a football practice. And he's like, he's like, I was super thirsty today at practice. He goes, I drink more than usual. I was like, let me see the bottom of your feet, make sure his feet weren't dry and stuff like that. And he's like, mom. And so some of the signs. And I've got the trial that actually for both of my kids sitting at home, and I've had them sitting at home for about six months, and I can't bring myself to do it. And I don't know. It's like, you know, if I don't know, is that better than if I do know if they have it? You know, I don't? I don't know what to do in that instance. I don't know what I want to do yet. So I have these kids sitting at home that I've done nothing with yet. Because I don't know what decision to make, I guess. I

Scott Benner 52:50
think that's a fairly reasonable response. And it's only you're only a year into it as well. So yeah.

Kayla 52:57
And then part of me is like, you know, if the kids know what those tests are for, and if they asked for the results, and if I'm like, Yeah, you know, you tested negative for all the markers, but if I don't tell them, then they're gonna know like, well, oh, my gosh, I'm worrying. I tested positive for markers. And I don't want to lie. So I mean, there's that other aspect. And maybe I'm overthinking the trial on that. And all of that I have no idea

Scott Benner 53:18
does sound like you're thinking of a little bit, but I understand why I understand what you are. I mean, what I would say is, if your kids have markers for type one diabetes, then they're going to get type one diabetes at some point? Very likely. Yes. And that doesn't change anything, does it? What does it tell? I?

Kayla 53:42
I don't know. Because on one hand, you know, you worry about if your kid's gonna end up with it or not. But yet on the other hand, if you know your kid's gonna end up with it, maybe you worry a little bit more about when it's gonna happen. I don't know, oh, you're worried no idea. You're

Scott Benner 53:54
worried worry that would come with an actual confirmation would be worse than the worry you have worrying about what may or may not happen. Yeah, maybe

Kayla 54:03
I don't know. And there's been there's been times where, like, I'm telling you, I'm so paranoid with the other kids getting it that the other kids like they started vomiting or I think something's happening. I have taken my other kids blood sugars. Sure. And there was yeah, it's been crazy because, you know, looking back on Zoey, before her diagnosis, and honestly, probably at least a couple months before I noticed she had been getting more more moody than what she normally issues normally not my movie child and I was attributing it to you know, a girl getting older or starting to go through puberty and things like that. Then I noticed her start drinking more. She has never been my kid to wet the bed and there was a couple times where she went to bed at night and she is probably going to be so mad at me for saying that. But and then I noticed she I thought she just wasn't gaining weight. And I'm like, Well, maybe she's just getting taller and stuff. And then there was, oh, gosh, it was a few days before her actual DKA. She'd come up to me and she goes, Mom, because my feet are really dry and I'm looking, I'm like, they're starting to crack. I'm like, What the heck, you know, and, and you still don't put two and two together at that point. Or maybe I just didn't, because I never thought, you know, your people who don't experience type one diabetes are very uneducated on the signs and symptoms, and just educated and uneducated in general, as type one diabetes. And so just putting all of those together, you know, you feel really, I feel the mom guilt very badly. Oh, boy. And I mean,

Scott Benner 55:45
you know, you did get her to the hospital, and she was okay. Right? Like, how would you like know, to look for something like that? I don't know. I understand. You feel that way? I would hope that in time you wouldn't anymore. So I mean, I'm not trying to talk you out of the way you feel I felt the same way you did. But it does go away if you let it, I guess is the is the point. Yeah. And Kayla episode 156 is called worry is a waste of imagination. Did you not hear that one?

Kayla 56:17
No, I listened to your episode on mom yelled, but not that one. Maybe I need to listen to that one. Because?

Scott Benner 56:23
Because the truth is, if there's something to worry about, or not, just worrying about it without knowing is. It really is you're just imagining something bad. It's not. It's not based on anything, at least if you're going to worry, let it be about something real. Because then you're sure Yeah, because then maybe a you've got a good chance that you won't have to worry about anything. And if you do have to worry, at least your worry will be targeted and maybe valuable. Like maybe you would go to T sealed and ask them about you know, that medication that stretches out the onset of type one. Like maybe your kids would do that. And put it off for a while. Like, that would be pretty cool. You know, like, I don't know. Yeah. I get what you're saying. Don't get me wrong. But Don't torture yourself. It's a short life. Okay.

Kayla 57:14
Yeah, yeah. Oh, I think I'll get over the mom kill eventually. But I'm, it's been about a year and a half since diagnosis. Maybe I should be over it already. I have no idea. But it's there. And I think the hardest part of her diagnosis, honestly, as far as getting everything up and going and not necessarily squared away, but just trying to adapt to our new lifestyle, essentially was with school because she wanted to go. I mean, she was right back in school that following Monday, and, and the only other type one diabetic in our school. She was in high school, she just graduated this year, and she was on an insulin pump. And I think she made sure diabetes differently then, then we manage my daughter, my daughter were more strict and things like that. So in the elementary, they really had no experience and and I'm not going to say names and go into situation entirely because I think if they heard this certain administration would just go off the deep end. But but it was really rough in the beginning. There was one point I had, I had someone I said, we changed those lunch ratios for lunch and actually the endocrinologist day because that was still the point where within a month of her diagnosis, we're still going to the endo for guidance and stuff. After a month i i haven't asked the endo for guidance on any of her dosages after a month and for diagnosis, because they just they played it too safe, I guess you could say. But um, I mean, I had one of the staff yelling at me, like why are you changing this? And I mean, they're not educated in type one diabetes whatsoever. And I mean, yelling at me in front of Zoey, I'm just like, how is this okay? And I finally got it somewhere. And then the whole texting diabetes saying and and see the nurse man so we were all in it and, and this and I had to fight to get that I had to fight to get basically Zoey to be able to kind of self manage at school and stuff. Because they they were not okay with it. And I finally had to just gather an email together to everybody involved in the superintendent and stuff and I had to attach like a copy of the Missouri statute that says she has a right to dose and carry anywhere anytime in a school setting. And I had to resume at one point I had contacted the Children's Mercy social worker and I explained everything that was going on to her and she goes honestly, she goes if you have any further issues, she goes I would. She goes I would take it. Take it farther up the line. Yeah, she's like, I would contact the ADA and all of that. And so it got pretty hairy for a while. But ever since ever since that email I sent them. I was professional in it and stuff. Ever since that email I sent them. Things have been pretty good. Good. So we'll see how next year goes, but But yeah, it was very, very rough in the beginning with the school. But

Scott Benner 1:00:21
it was a big deal. When Arden was younger, one of our outgoing governors signed this bill, like literally on like, the last day, you know, when they just, you know, when they do all this stuff on the last day, they think wasn't going to be good for them getting reelected. But once they're done, they're just like, they sit through everything. So they made it okay for kids to give themselves insulin in New Jersey in their classroom. That was a long time ago already. But it was amazing how resistant they were the school was like, no, no, it has to be in the nurse's office and they talk to you about it. Like it was like, there was like a real reason. And I couldn't wrap my head around it. I then that that governor, he signed that bill. And then I found out about it. And I was like Orton to the software and some of the room now and they were like, okay, it was just like that, like, okay, so there was no real reason not to do it. Other than we were just doing what we were told, like, I gotcha, and

Kayla 1:01:11
see the reasons I was told why they didn't want her to carry her own supplies, and not even her own emergency pen. And was what if other kids getting her stuff?

Scott Benner 1:01:21
Oh, I would say those kids should keep their hands off. It's not theirs. But

Kayla 1:01:26
that's exactly what I said. And and I had to fight to get, you know, for the way to be able to text me for guidance and things like that. And I said, Look, I said none of you are experiencing type one diabetes. I said Zoey, and I have it pretty fine soon to what works for her. I said, I'm not asking for you to allow us to be on our phones to message every I said, you know, Tom, Dick and Harry. I'm like, it's literally strictly for diabetes, LA. And then they had come back with well, you know, what, if another student sees on a film, they're gonna think they can get on theirs or have special treatment? I said, Wait a minute. Yeah. I said, I don't care about the other kids. And I said, I know for a fact there's other kids in that classroom that get special treatment. So you don't even go down that road with me.

Scott Benner 1:02:10
I actually told a person one time I said, you tell those kids, if they'd like to get an incurable disease, they can have their phone to. Yeah, they think it's worth all that or otherwise, you'd be an adult and manage the situation. Like I yeah, my daughter is going to be unwell or less well, because you're worried that a kid in her class is going to look at Instagram. And that's not something you can deal with. Like, try harder. You know? I actually that reminds me one time when Arden was in middle school, she came home like very earnestly, and she goes, Dad, at the end of the day today, we were having this conversation about something. And I'm like, right, and she was it was the end of the day. And I'm like, okay, and she goes, so I looked at Instagram on my phone. And she's like, I'm so sorry. I was like, because we told her the phone is just for diabetes. It was sorry. It was like it was the end of the day. Right? And Susie, I said don't worry about it's fine. She was but it was on their Wi Fi. I'm like so okay, don't oh my god, don't worry about it's gonna be alright. So she took it seriously. We told her like the phone is for this. It's not for that other stuff. And you know, the other kids are going to be complaining and she's she said she heard it a couple of times. Like what's not fair. Norton was like, fair, nothing about this this fair? Yes, exactly. Gosh. Well, it sounds like you work through it. Okay, though. Yeah,

Kayla 1:03:35
we've we've worked through the school issues. I think for the most part, it was really rough in the beginning. And I say I had a lot of a lot of issues with them and stuff, but I think we've ironed them out and whatnot. And I know one of the arguments about Zoey self managing was She's a kid and they don't think she should have to take on that kind of responsibility. And I I told them I said, you know, she is a kid but she's a kid with type one diabetes is it in this is, um, like, it does suck if I could take it from her, I would have said but this is her life. Now this is our life. And if she doesn't learn how to manage it now, so she's never like, I want her to manage it. So she grows up to be healthy and doesn't have all these complications and, and things like that. I'm like, I like I can't help that you feel that she didn't have to have that responsibility. I'm like that. She does. I mean, point blank. I can't take it from her

Scott Benner 1:04:24
right. Also in a world where the truth is that really well, like educated people only are able to about halfway give you good information when they're helping you with your diabetes like no offense to anyone. It's a great it's a great job. And I think it's a it's wonderful that people do it. But you know, somebody who's a nurse at a school is not prepared to take care of like diabetes beyond you know that there are medical people and you can give them a checklist and they can follow it and everything which is terrific. I mean, it's amazing. But if you're looking for them for like deeper understanding, it's likely not going to come from them. And now you're, you're saying they're the end all be all. And I don't know how that goes, you know? And

Kayla 1:05:05
you know, I remember what one of the comments that really got me the most what kind of reached that crescendo of me emailing and finally getting what I want, you know, the texting, texting diabetes and then her being able to self manage kind of anywhere, anytime, which I wasn't asking for anything. I don't feel like crazy That was crazy. You know, I was I had got a phone call from when the administration that just that said, you know I just with the school nurse and everything she gets like, I think she just feels like you know, you're kind of taking that control away from her. I said what control she's my kid. I'm like I get you guys are early get really responsible for why she's in school and stuff. I said, but I'm not asking to keep anybody out of the loop. I said, I'm not saying she can't go to you guys at all. I'm like, I literally just want to be able to manage this in the best way possible for her. So she doesn't have the higher blood sugars and things like that. And there's there's been so much other stuff with this at the beginning, but way too much to get into. But yeah, and I think it's all good now. And we've kind of reached that crescendo. And you

Scott Benner 1:06:13
may, you may have had a very similar situation than I did when Arden went into high school. And I sat in a little conference room and the nurses like, well, this isn't how we do it. And I was like, oh, that's something I'm like, it's how we do it. So am I worried about you? Meeting? So is this meeting about how you feel? I'm like, we're not worried about you.

Kayla 1:06:37
Yeah, fantastic. And then, you know, it got to the point where is that we come home and she's like, I'm not comfortable making decisions at school on my own. And because I feel like I'm gonna be judged for it. And I was like, Well, great. I mean, I didn't really know how to respond to her at that point or handle that. But I mean, we finally talked it out.

Scott Benner 1:06:54
She thought she'd be judged by the school and the nurses, the school

Kayla 1:06:58
just she thought that she would make a decision that they thought was wrong. And I guess essentially hold it against her or something. I don't know, you should

Scott Benner 1:07:07
always hang out with Audra for a couple hours. She wouldn't think I got any more.

Kayla 1:07:14
I've always told her I'm like, Look, if you end up getting yourself too much in Flint, I said you have sugar. If you end up giving yourself not enough insulin. I said you have insulin to give. I'm like, Well, you know what? Episode is gonna go wrong.

Scott Benner 1:07:26
Episode Three clearly says texting is. I still think like, if you're parenting a child with diabetes, texting is the absolute wrong son Aang song on song, where did that word go? It got caught my throat unsung. There we go. I'm not going to try to say the fourth time because I got it the last time and I'm good with it. But it's technology that you can't ignore. It's very valuable. It takes away the waiting in between it allows the immediacy for treatment. It allows for a kid to say hey, I'm not sure about this, or for you to say hey, what are you doing? And like just, you can have a 32nd Texting conversation that eliminates so many problems and really doesn't interfere with their day. And yeah, I think it's just the way to go, honestly. So

Kayla 1:08:15
yep. And I listened to your episodes on that. And I listened to probably about every single episode I can find on on people's issues with school and five, a four and all of that. And I've kind of implemented all that from the juice box plus the research I've done with you know, like the ATA and you know, Missouri statutes and I just threw all that at the school. And I was like, Here you go. I'm like, I am not asking for anything nobody has asked for before. Yeah, I said, so.

Scott Benner 1:08:41
We're not doing anything crazy here. I mean, you've said it a couple of times. We're not doing anything crazy here. Just try to think outside of the box for half us I hate that term, because it sounds douchey. But, but like just try just just try to think outside of the box for two seconds here. And like, we have a thing it's going to work. Like it's going to work so much better than the thing you want to do. And isn't her health like in general, like not just her health by the way day to day, but her expectations for her health and our expectations for autonomy and all those other things that you don't realize you're building as you're going like you if you teach her? It's not on me it's on somebody else. That's how she grows up thinking and if you teach her well I'm busy at school today so with 200 blood sugars, okay, well then that's how she's going to manage her health moving forward like it that'd be a hard a hard thing to break later as a bad habit. Yep.

Kayla 1:09:38
And and that's, you know, what I told the school to I said, I'm trying to create good healthy habits now and her to manage it now. Yeah, I said, and honestly, she is my most strong willed child. But she's she's done pretty fabulous with this. I mean, we don't sounds terrific. We don't let it hold us back and we're about to go in a couple of weeks on on the river float down south for about six to seven hours. And last summer, we went to Michael's cabin in the mountains, it's completely off the grid, no cell phone service for anything, we were up there for three days. And I mean, it's, we don't let it hold us back. But I mean, we do have some things to work there still and stuff. I mean, I'm sure there's things that haven't come up yet and just the major a year and a half that we've been dealing with this, but they will,

Scott Benner 1:10:23
they'll come up and then you apply this, this way of thinking to those things. And you'll be surprised how well they work out. You know, just be got common sense. Put yourself in your health first, that that really is the way to get to it, honestly, and this thing, you know, I want to cut, we're kind of we have to wrap up here in a second. But like, the way you pass, you probably have to pay or go home or something. But

Kayla 1:10:48
I'm still staring at all of I work at a agricultural equipment company, a John Deere dealership, essentially, and some ended. So you're saying all of these combined for the last.

Scott Benner 1:10:58
But um, you talked earlier about like, you didn't think you were a person who had anxiety, but now you feel like that. And I don't know, like anxiety to me, I'm not discounting anyone's anxiety for certain, but it feels like a word that gets thrown out around a lot lately. And you know, I mean, if there's something you're worried about, then I think you should try to eliminate that worry and see if that feeling doesn't change for you as well. I just I didn't want to get off without mentioning that. So I mean, if there's a thing you're worried about, stop worrying about it. I don't mean just like magically stop worrying about like, find a way not to worry about it, like prove it to your site. You

Kayla 1:11:36
know, my husband's pretty much told me the same thing. It was like what's gonna happen is gonna happen. And I think I'm most honestly worried about my other two kids getting it. And I know, there's families out there with multiple type ones. And I don't know how they do

Scott Benner 1:11:47
it. Yeah, that they do it, because that's what they got to do. And you would too if Yeah, yeah, same thing. Same way. Everybody does everything. You know, just get up in the morning and don't give up. It's pretty much it. Yeah, like you and I are married, so I can tell you just to calm them down. But your husband can say that. And if I went downstairs and said that to the lady downstairs, you wouldn't get the podcast anymore, because I'd be dead. But yeah, here we are. And it's good advice. Yeah, I could use that advice given to me sometimes, too. By the way, I thought I wasn't saying because you're a lady. Sometimes you just, you know, you get a little wound up in something. And it's hard to, it's hard to get away from and then the one person you count on to help you is the one person who you push back on when they when they try to help you. So life's weird. I don't want to, I don't want to get too deep. It

Kayla 1:12:37
is and I probably do just need to calm down and stop worrying about you know, what could happen in the future. And I've never been that tight. But I mean, it's, I'm working on it. Let's just say that.

Scott Benner 1:12:49
Honestly, being serious, like you're aware of it. I think that's a big deal. Yeah, yeah. You don't I mean, you're not just telling like you're not telling me like I'm upset. I don't I like it's not unfocused, your your response to it, you know what's happening. So anyway, I say, here's what I do. I'd give the kids a trial, nothing. It's very likely going to come back that they don't have markers, and then you'll be okay. And if it comes back that doesn't have markers light on for a while. That's fine. You can do whatever you want. You're an adult.

Kayla 1:13:21
That is sure. I mean, as a parent, I guess we can't say that we've never lied to our kids. And

Scott Benner 1:13:26
it's not really lying. Is it? Like I'm being silly. I know, I brought this up earlier and I bumped everybody out. I'm gonna do it one more time. Okay. So people are gonna hear this some six months after this happened. So try while you're listening not to feel bad, please, please. But my mom like you've, if you listen to this podcast, like my mom got cancer, she had a significant surgery that removed it. She did chemo and rehab for a year, she was pronounced cancer free. She moved out to Wisconsin to live with my brother. And maybe about six months later, her cancer markers started to creep up again. And we did exactly what we were supposed to do. But there's no doubt like, you know, going through chemo like slowed her down a little bit. So you know, her memory wasn't as good. She's tired a little more often, like those sorts of things. And we could get her to the doctor and be like, Oh, it's a heart doctor appointment mom, she'd like a heart doctor appointment. And you know, like, and even if the doctor said right in front of her, like, you know, it's not like she's listening with the same year. She was 30 years before that. So when we took her back and the markers went up, we asked the doctor Well, what what are you going to do? And he goes, Well, right now we can't do anything except check the markers again in 30 days. And they did they went up again. So they gave her a CT scan. And the scan came back clean. So we there was nothing for us to really do in the moment. And anyway, we never told my mom that they were checking on her cancer. We never did and for the last six months for life, she got blood tests where they track the markers. And the CT scan that showed that my mom's cancer return pretty significantly arrived a couple of days after she had a stroke, and just a day or two before she passed away. And I have to tell you, I'm not just happy that she didn't know, I'm proud that she didn't know. Like, I'm happy that my mom lived the last year of her life thinking she beat cancer, and it never came back. And I'm not saying don't lie to your kids for 20 years about they have markers for type one. But if they do that, on your time, when you're able to articulate it well, in a setting that is controlled, that is right for them, you'd be able to tell them that you don't I mean, like, yeah, it's not lying. It's just good management of relationships, I think. I don't know. I'm sure people

Kayla 1:15:55
think I think my son could handle the news. But I know my youngest one 100% would not not be able to handle it yet. There's around the time of her diagnosis. Within that year or two, there was just so much death within the community. I just, she's still right. She was still worried over her sister's diabetes. And I just have to reassure her, like, you know, everything is handled. I mean, you know,

Scott Benner 1:16:20
it's She's little, like seven, right?

Kayla 1:16:23
So she's a, she'll be nine, okay, in August.

Scott Benner 1:16:26
Listen, if my if I had your situation, and my eight year old's numbers came back, and she had a marker for type one diabetes, and he told me Look, it's possible that she could get it and it's possible she won't get it. I would not pull her aside and tell her that. I just wouldn't. I'd be like, Alright, listen, we know now to pay attention a little more. I'm not gonna burden a nine year old with this an eight year old with it, right? If it came back, she had four markers, and they were like, Look, she's gonna get diabetes the next time she sneezes, then I'm like, You know what, then I might start talking to her about a little bit and even not even talking directly right away, but just prepping her in ways that she might not even see coming. I don't know, there's a way to do it as but I'm saying you can do it. Yeah, I've been talking to you for an hour, you're a bright lady, you'll figure it out. It's better than you wander around worried all the time about something that probably isn't going to happen. makes me upset. Plus, I imagine you're not able to tell you.

Kayla 1:17:23
I can only imagine what goes through his head.

Scott Benner 1:17:25
You don't have to imagine we would tell you if you asked like we were not smart enough to keep it to ourselves. So

Kayla 1:17:30
it kills us women want the truth or what you guys are thinking or not. I

Scott Benner 1:17:35
don't imagine you do if you could hear inside of my head, Kayla, I still sound like I'm like 16 years old. Like, where do you the other day here? Let we're gonna end here, right? I've been married for like 26 years, like a really, really long time. And my wife comes upstairs, and we're gonna go out like she's been working all day. And I guess if I'm being honest, she was wearing like a sports bra. And we're gonna go out so she comes out to put a real bra on. And she does it in my office while we're talking but under her shirt, and all I could think was Would it kill her to take that off while she's putting that bra on? Like, why is she wearing the shirt? While this is happening? Like I was 15 is what I was thinking. I've seen my wife's boobs so many times, Kayla. And I swear to you, we're sitting there talking about where to go to dinner, all I could think was like, I wonder why she's like, why wouldn't she just take that shirt off to do that? Anyway, so we're thinking something along those lines, in case you're wondering.

Kayla 1:18:35
Yeah, my husband the same way we've actually I'll be 30 for July 2, but we've been together since I was 16. So it's been quite some time for us to and there's moments where I'm like just to see have to you know do that every time I do the dishes or just pushes the buttons on purpose and I think you probably know what I'm talking about.

Scott Benner 1:18:56
I actually my wife came out of the shower one day and I could hear the little voice in my head Goobies I don't know what to tell you. It's how it works. I'm sorry. I get act like it doesn't you give tell people like oh, I listen to this guy. He's really good at diabetes seems really smart. But I sort of got like, that's a she. I was like, Oh, this is it? This is it. I don't I'm sorry. I apologize. I feel dumb saying it. I'm not gonna lie to you. But it's the absolute truth.

Kayla 1:19:24
So no, I'm my husband's the same way. So yeah, that's something kids.

Scott Benner 1:19:30
Yeah. Don't ask us what we're thinking if that's not what you want to hear. Yeah,

Kayla 1:19:34
I've learned that already. I think. And

Scott Benner 1:19:37
by the way, the minute it's not like that, the minute it's not like that, she'll be like, Why don't you Why don't you're interested in seeing this and I'm like, oh, okay, like I can't possibly win. So, you know, I just know you guys can't I just I'm playing the game till she decides to smother me with a pillow. That's all which I'm assuming this the decision has been made. She just doesn't have the nerve to do it yet. But it's It's one day I fully expect that's how I go out just

Kayla 1:20:02
expecting it right now. That's why she hasn't done it yet.

Scott Benner 1:20:05
I guess I should have recorded here. If anybody hears I died my sleep call a cop. That's not what happened. It's not what happened. It needs to be investigated. Okay. Thank you. All right, Kelly, you were delightful. I appreciate you doing this very much. Thank you. I really do appreciate you taking the time. Yep,

Kayla 1:20:21
not a problem. Thank you. Oh, hold

Scott Benner 1:20:23
on one second.

If you'd like to wear the same insulin pump that Arden does, all you have to do is go to Omni pod.com/juice box. That's it. Head over now and get started today. And you'll be wearing the same tubeless insulin pump that Arden has been wearing since she was four years old. A huge thank you to one of today's sponsors, G voc glucagon. Find out more about Chivo Capo pen at G Vogue glucagon.com forward slash juice box. you spell that GVOKEGL You see ag o n.com forward slash juice box

if you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes, but everybody is welcome. Type one type two gestational loved ones. It doesn't matter to me. If you're impacted by diabetes, and you're looking for support, comfort or community check out Juicebox Podcast type one diabetes on Facebook. Thank you so much for listening. I'll be back soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com