#358 Defining Diabetes: Compression Low and Interstitial Fluid
Scott and Jenny Smith define diabetes terms
Defining Diabetes: Feeding Insulin. Scott and Jenny Smith, CDE define the terms that are at the center of your type 1 diabetes care.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
This episode of defining diabetes is brought to you by Omni pod, the tubeless insulin pump, and dexcom, makers of the dexcom g six continuous glucose monitor. Find out more at my Omni pod.com Ford slash juice box and dexcom.com Ford slash juice box on the pod we'll even send you a free no obligation demo. In this episode of defining diabetes, Jenny Smith and I will be defining compression low and interstitial fluid. Now you know Jenny, she's in all the pro tip episodes and defining diabetes and ask Scott and Jenny. She's also a person who's been living with Type One Diabetes for over 30 years. Jenny holds a bachelor's degree in human nutrition and biology from the University of Wisconsin. She is a registered and licensed dietitian, a certified diabetes educator and a certified trainer on most makes and models of insulin pumps, and continuous glucose monitoring systems. Jenny services are for hire, check her out at integrated diabetes.com.
We're gonna get started in just a moment. But before we do, please remember that nothing you hear on the Juicebox Podcast should be considered advice medical more. Otherwise, please always consult a physician before making any changes to your health care plan. or becoming bold with insulin.
Do you have an absolutely spectacular endocrinologist certified diabetes educator diabetes, nutritionist you know anybody who's helping you with type one? You have one like that, that you'd love to share with other people? Or are you looking for one that fits that description? Check out juicebox docs.com. If you do JUEBOXD OCS, it's a place where I'm collecting an amazing list of fantastic support for people with type one diabetes, it's absolutely free. If you have somebody great to add, check it out. If you're looking for somebody, check it out.
So this one is Dexcom specific, although you might tell me it's more than Dexcom specific. Okay. Compression low. So if you use a if you use a Dexcom, for sure. And does it work that way for other devices, too?
Jennifer Smith, CDE 2:50
Oh, for like libri. And for Medtronic, yes. Okay. I mean, essentially, because they're all reading the same interstitial glucose from the fluid. So really, when you compress that site, regardless of the sensor brand, what it is right, you get the same impact of the same issue.
Scott Benner 3:11
Okay, so here's, here it is, if you're wearing a glucose monitor, and your blood sugar is just cruising along super stable, and then all the sudden it drops so drastically that it seems abnormal, and you panic. And you're like, Oh, I'm dying.
Jennifer Smith, CDE 3:30
I feel like it looks like a cliff die. That's how I kind of describe it to people. Like you're sitting on the edge of this beautiful cliff. And all of a sudden, like, like right over the edge it going. You're like,
Scott Benner 3:41
supposed to do that. And I Can you see them? I can see them now. Oh, yeah. Yeah, like you look at the graph, you're like, Oh, she's not really low. But But here's what could happen. You could have a glucose monitor early on, see that low, eat a bunch of food, and then 10 minutes later be significantly higher and think I don't understand what happened. I was I've been 110. Then suddenly, I was 55. And I took in enough cars. Why am I 200? All the sudden, right? So here's what happens. A continuous glucose monitor is reading interstitial fluid. And I have to say, we do this all the time. And I'm not a fan of it. Really. I say that. Like I say that, like I know what the hell I'm talking about. Okay, but interstitial fluid. I'm gonna tell Jenny like, what is it? Exactly, because I say it because I know what the function is in my life with diabetes, but I couldn't define those words. I don't believe.
Jennifer Smith, CDE 4:40
Yeah, I mean, in layman's terms, essentially, interstitial fluid is just the fluid between all those cells and everything within the body. So you know, you've got glucose in the bloodstream, and then glucose moves out of the bloodstream in through your interstitial fluid. into the cells in order to be utilized, right. So it's like this pass through effect, which is often the reason then outside of even, of compression mo issue. It's also the reason that there's lag that's visible in all the CGM systems because glucose, blood glucose is your first like real time right now value, right? And anytime that glucose is moving out and into your interstitial fluid, to see glucose levels change there, they have to first come out of the bloodstream, if that makes sense, right. So there's a lag time essentially. And a big part of the leg is often when glucose levels are changing very rapidly in the bloodstream, or around food or quick activity or whatnot. But even so then with compression low, there's still time that it takes for that change in glucose to happen from blood glucose to interstitial fluid glucose. So compression lows are very visible, like you said, you can you can almost 100% kick them out, because that you're coasting along quite nice. And all of a sudden, it just falls down. Yeah, that's not how fast blood sugar changes,
Scott Benner 6:25
it could fall that fast. If an hour earlier, you gave yourself a big bolus and forgot to eat and then there would be a moment in that drop where you were falling like that, but you don't just go from stable to like, floor falls out from under you. That's, that would be uncommon. So this, so this episode just turned into defining diabetes, interstitial fluid, and compression. Lo I just decided, as we were talking, I'm looking online. And you know, obviously, what you said is 100% is what I'm seeing here. interstitial fluid is a thin layer of fluid which surrounds the body cells. interstitial fluid becomes useful has become useful recently in the monitoring of glucose levels with people with diabetes. And let me thank diabetes.co.uk for having great see SEO and popping up in my Google search. So interstitial fluid, as Jenny's described is carrying glucose that your your glucose monitor is monitoring,
measuring, right, thank you,
when you roll over, or sit down, or push really hard on your sensor, and by the way, I'm wearing one right now. So I'm pushing very hard on mine, right now I get to wear one for 10 days for the very first time in my life. And you do that that compression of the sensor into your body is dispersing the interstitial fluid away from the sensor wire. So your blood sugar, interestingly enough, right around the wire is being read accurately as 50, all of a sudden, because you've pushed most of the glucose away from the wire that's doing the measurement. But your body, your glucose in your body hasn't changed. It's just literally changed around where you're pushing on it. That's a compression low a low that shows up because you're laying on pushing on sitting on whatever, your sensor, and what the first number of times it happens to you. I can speak. You know, from my experience with Arden, it'll flip you out, then, but then, like Jenny said earlier, the first thing you can do is look at that graph. And eventually, you'll see what that curve looks like for a compression low. And then it takes How long do you think how many cycles of the CGM before it starts figuring things out again, and the food comes back?
Jennifer Smith, CDE 8:44
You know, I think that's, there's probably a variance, but it's also a very quick turnaround. In fact, I was gonna mention to from the data point, visual, you know, each little.is supposed to represent like a five minute interval, right? Well, when that glucose has fallen off the cliff or nosedived, there's, there are less dots, it becomes less accurate with the number of dots and the like the fluidity of the dots and the movement. So you'll also see as soon as the compression low writes itself, either you move in your own sleep, or mom or dad wake you up because they got the alert and they wake you up and have you roll over whatever. It typically writes itself. Fast after that, and all of a sudden, you'll see almost like, you know, a rocket ship has shot the blood sugar back up to kind of where it had found a look on the graph. Yeah, it's how it'll look on the graph. And you'll also see those dots become a lot more stable and normal. I got a long it takes I think it depends on how soon the compression lowers address, right. You know, for an adult on their own. Maybe they didn't even hear the alert or maybe it took a while for them to hear the alert. And so it takes them a while to move enough. And so then that low might look longer than a typical up down.
Scott Benner 10:15
I find myself wondering sometimes does Arden's phone beep and just that beeping stirs are sleeping off that she turns over, because there's times I'm not woken by it, but in the morning, you'll come and go, What happened here? You know, where it's like steady, steady, steady, 50. back up to the where it was steady, steady, steady, and nobody woke up. But there are also other times where if she's, if she's, I guess sleeping harder and doesn't roll off of it. I have to make my way across the house. And I the words aren't in rollover, you're laying on your sensor have come out of my mouth a number of times in my life. Yes, Arden rollover, you're laying on your sensor, just enough to I'm trying to put it indoors subconscious or, you know, whatever it is when you're saying, like, please stay on this side or something. But isn't it interesting? Arden Where's her sensor? In the same basic two areas, she's on her hip, left to right, left to right. And because you get 10 days in between, we just bounce back and forth. It doesn't you know what I mean?
Jennifer Smith, CDE 11:11
And the likelihood that you're going to hit exactly the same place right on that side after 10 days of not being I mean, it's like a million to one we don't live
Scott Benner 11:21
it around still a little bit. But my point was, is that with like compression was don't happen to us very often, because we have good spots. But if you move it more towards your hip bone or something like that, I guess it just changes how you sleep on iOS, sometimes I just wonder, does she sleep differently? Sometimes and not others, but it's got to be more about the the positioning of the of the sensor. So that's why like stomach sleepers, if you wear it on your stomach, you might you might be getting that, you know, side sleepers on your hips, like there's ways around it. But it's one of those things that you just hear people talk all the time, like, Oh, that's a compression low and people who no say it, like, that's just a compression low, right to the person who didn't know, they were like, I thought I was dying, just so you know. So in the beginning, and probably we should say you should still test them. But like, if you see a 50, you do a finger stick and you're 108 that's what's going on. And don't calibrate your meter or your your glucose monitor. And they're like, if you're keep that in mind if you're 100 Nate, and suddenly it says 50 do not calibrate it. Because it really, really, it really believes it's 50 because it's reading that dispersed fluid and you will mess it up in that situation. So, you know, test when you're not sure. But I think it's fair to say that after a number of years with diabetes, you'll you'll know the difference. And by the way, if it's not a compression low, it won't take long for you to figure it out. Right, you know, because you'll keep dropping most likely. Right, Jennifer? We're just too good at this to be perfect. I think we could probably do this while riding on a bus. reading a newspaper like we could be sure we those two dolls in the Muppets we could be up in the rafters like making fun of the people on stage and at the same time telling people what a protein rises.
Jennifer Smith, CDE 13:11
That would actually be really humorous like skit to do.
Scott Benner 13:16
Wow, these people have found a way to make diabetes even more exciting than it is now. Friends, it's time to get yourself a free, no obligation demo of the Omni pod sent over to the house. Okay, let's talk about the Omni pod tubeless insulin pump, besides being absolutely spectacular, is the insulin pump that my daughter who is about to turn 16 has been wearing every day since she was four years old. That's a long time. Every day on the pod comes through exactly the way we expect it to. And in a myriad of ways, by being unobtrusive by being tubeless by helping us with extended boluses Temp Basal rates. And just being what's the word I want really just it's there, it's solid. You don't mean like it does. It does what I think it's going to do when it's going to do it, I get what I expect. And what I expect is a quality insulin pump. That gives me the delivery and the wearability for my daughter that we need. And that means that she can stay attached to her insulin, when she's playing sports without being obtrusive, while she's taking a shower, sleeping, running around in the backyard jumping on the trampoline, riding a bike, swimming, all of the things that your body still needs insulin for. You know when you hear people saying oh, I disconnect for that? Well, they don't have insulin during that time, and that's very likely gonna cause a high blood sugar. Now I understand that tube pumps need to be done. Connected sometimes. But the Omni pod never needs to be disconnected. It's tubeless. Wonderful. And you don't have to take my word for it. Because on the pod will be thrilled, happy, elated, delighted to send you a free, no obligation demo that you can try on yourself. Find out if what I just said is true. But you notice, but still try my on the pod.com forward slash juice box. Check it out, get the demo, decide what you want to do. If you want to keep going with Omni pod, it'll be easy. And if you don't, no harm, no foul. You were just trying. That's why they call it no obligation. Now I have an obligation to tell you about the dexcom g six continuous glucose monitor. This obligation is both business oriented because their advertisers and moral because I think everyone should know about the Dexcom g six continuous glucose monitor. Here's why. I'm gonna use an example from this morning. Arden wakes up her blood sugar is 106 I see it on her Dexcom nice and steady. I hear her moving around upstairs. No big deal. She's getting her facewash getting dressed, getting ready to actually go out right now. All of a sudden or blood sugar diagonal up starts moving up. 106 turns into 115 turns into 118 all of a sudden 125 Well,
we bolus right we're trying to stop that rise before it happens. Arden is trying to go out she's trying to do things she needs to eat. She doesn't need to walk into this day. 5060 7080 points higher than she needs to. But imagine had she woken up and tested her blood sugar with a meter boom, she would have saw 106 and thought, Hey, I'm doing great. And then she never would have seen anything that happened next. And then a half an hour 40 minutes later when she's sitting down to eat and tests again. You know in a world without a CGM. Who knows what she is to 25 now suddenly, the first meal is in jeopardy. It puts the rest of the day in question. You're looking at roller coaster going up and down and up and down are skipping a meal. Instead, beep beep Arden's blood sugar hits 120 she gets a little insulin right back to where we need to be ready for that meal ready for the day. That uniquely happened because Arden has a dexcom g six continuous glucose monitor. Now that's just one example. Imagine all of the other ways that technology can be used for you. Imagine that the way I found out about it wasn't because I was bugging Arden while she was getting dressed. It's because it popped up on my iPhone. Because the dexcom g six has Sharon follow. And that works on Android and iPhone. So Arden CGM told her app or app, put it up in the cloud, it came back down on my phone, just like that we averted a high blood sugar, burden the problem at a meal, save the day Dexcom g six is gonna save more than one day for you. That's for certain. Find out how you can get a dexcom@dexcom.com forward slash juice box. There are links to Dexcom Omni pod and the other sponsors at Juicebox podcast.com. If you can't remember them, they're also right there. in the show notes of your podcast player, you can click on them right there, like click Like with your finger. But very much appreciate when you support the sponsors because it supports the podcast, whether it's on the pod Dexcom the Contour Next One blood glucose meter or touched by type one. When you check out the links. You're telling those sponsors, I listen to the Juicebox Podcast I heard about you there. They keep sponsoring you keep getting the podcast for free. Seems like a good deal. Alright, a little bit of music, and we're out of here. Do I have any announcements here, maybe one Hold tight. You can find the rest of the defining diabetes series as well as ask Scott and Jenny and the diabetes pro tip episodes at diabetes pro tip.com. You can find them too at Juicebox podcast.com. But you know diabetes pro tips pretty easy to understand no s after the P so just the P no si p.com diabetes pro tip.com. Also, if you have a great doctor or need one for type one diabetes, check out juice box docs.com do cs juicebox Doc's calm, an ever growing list of type one diabetes, health care professionals that listeners that the podcast have recommended. Let me give you a couple of examples. For instance, right there in Australia, Rachel Baker, Rn NCD. He does some amazing work. How about up in Canada, Dr. Jeremy Gilbert, over in Ontario, that's Toronto. You understand Toronto, Ontario, right? Like Canada does their places weird? I mean compared to how we do it. How about Melissa and Tony Nik in Fairfax, Virginia, alfonzo, Armstead, Nashville, Tennessee, and many, many, many more. And people put in effort when they send in their doctors to give real examples of why, for instance, someone wrote in that Elizabeth Harris in Chapel Hill, North Carolina, she said about Elizabeth, I've worked with Dr. Harris for close to a decade and she's taking care of me through many different stages of my diabetes. From the disengaged teenager to the engaged with struggling young adult to well controlled diabetic goes online, check it out, juice box, Doc's calm. It's not a pay service. None of the doctors are paying me to be there. It's just me trying to take your good experiences, and putting them in one place so somebody else can get the advantage of what you've learned about your doctor. Thank you so much for listening. coming up soon on the podcast. There'll be another after dark episode. Another pro tip is coming with Jenny about pregnancy and type one diabetes and of course, tons and tons and tons of interviews and conversations with people just like you. I'll see you soon.
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#357 Just Smile and Wave
Owning change in type 1 diabetes
Katie is a mother of four who is on the show to talk about how she took control of her daughters switch from MDI to pumping. I love her attitude about type 1 diabetes!
App is free & already on your iPhone ⤴
You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Pandora - Spotify - Amazon Alexa - Google Podcasts - iHeart Radio - Radio Public or their favorite podcast app.
Check out the Diabetes Pro Tip episodes and Juicebox Docs
+ Click for EPISODE TRANSCRIPT
DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello everybody. This episode of The Juicebox Podcast is sponsored by Omni pod and Dexcom Dexcom. Of course makers of the G six continuous glucose monitor and Omni pod makes a tubeless insulin pump that I think is second to none. If you'd like to try a free, no obligation demo of the Omni pod, you can do that today, very simply by going to my Omni pod.com forward slash juice box. If you want to learn more about the Dexcom g six continuous glucose monitor dexcom.com forward slash juice box.
You're listening to Episode 357 of the Juicebox Podcast it's going to be called smile and wave. In this episode, I'll be speaking with Katie. She's got like 400 kids or something like that. And one of them has type one diabetes. Katie came on today to talk about what it was like to go from MDI, to a pump. And some of the things that she experienced along the way. This episode becomes very Guinea. I very much like Katie and I and I like chatting with her. Turns out that I've spoken to her before and really didn't remember before we recorded this, so that was a little embarrassing. As you're listening, if you'll do me the favor of remembering that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. And please, of course, always consult a physician before making any changes to your health care plan or becoming bold with insulin. I would appreciate that if you you know, would remember that. Alright, let's jump right in. Katie is really delightful. I quite enjoyed talking to her.
Katie 2:11
My name is Katie and I have four children and they are 14 1311. And then four, and she is our type one. The four year old, the four year old. Now when you thought to come
Scott Benner 2:25
on and be like right away, I'm gonna get made fun of for having four kids. That was it. Yeah, yeah. Yeah. And that's why I'm not gonna do it. Because it seems like that's the way I would go. And but but my God, let me just ask this then. All with the same Dad.
Unknown Speaker 2:42
Yes. All with the same dad. So then the four
Scott Benner 2:44
year old was a I don't like to say this where it's gonna be recorded. But after a dinner with a couple of drinks on a Friday night, something like that kind of a situation. I guess
Katie 2:54
we had we have the older three that are very close in age. And then somewhere in the in between the left the 11 year old and the four year old almost five. We did have two foster children that we had for a little while and then they were placed with an aunt and so that middle area was filled with six other kids. And now
Scott Benner 3:16
you get somebody back on your team because I guess the other three are gonna overpower you. But you have are the older three or do you have four girls?
Katie 3:25
No. The second one is a boy but yes, three girls one boy. Oh,
Scott Benner 3:29
yeah, that's good. Yeah, terrible. Um, so yeah, I hope that doesn't sound sexist at all. But that's gonna be horrible.
Unknown Speaker 3:37
Yeah, again. Oh, sure.
Scott Benner 3:39
Oh, sure. Oh, geez. For like, probably I'm guessing a span of like, Where's it start right around? 13 it Where does it start? Where do ya where they start coming at you like demons around 13? Probably doesn't really until he got to think maybe ready every school college and then they probably picked up again in their early 20s. And then in their late 30s. And yeah,
Katie 4:04
it's gonna keep on coming. And the
Scott Benner 4:06
younger one was a girl too.
Katie 4:07
Yes, she's a girl.
Scott Benner 4:08
Yeah, the little people are not good at like stacking the deck in your favor. I can say
Katie 4:12
no, no. And she's a handful. So
Scott Benner 4:17
that's such a polite parenting word. Like I would love to be with you somewhere quietly privately where I said you tell me about that kid. You use a different Adjective.
Unknown Speaker 4:26
Not hateful Scott. I think she's trying to kill us.
Scott Benner 4:31
Yeah. All right. So listen. It so we're not going to just it's not that those first three children aren't important but we're going to skip right over them like they don't exist and go right to the four I'm
Katie 4:41
sure that's how they feel.
Scott Benner 4:45
So why don't we start with that right. Your when your youngest is born? How long until she was diagnosed what age
Katie 4:54
she was diagnosed at. Three like just turned three. Are you coming up on two years. We are about well, about a year and a half in a little over. Do you
Scott Benner 5:03
think? Do you think the other three? Now you had you had foster kids? So maybe this is a similar thing. I'm now in my mind equating foster children to diabetes only because it's like an extra thing to do that draws the draws attention away from other children. I guess that's the way I was thinking about it. Right. And so now, like, I'm gonna get a note from every person who's ever had a fault, they're gonna be like, they're not. And But anyway, you know what I mean? It's another thing to think about. Yeah, it takes attention away from your other kids. Do you see that with the other three? How do they feel about it is near as you can tell?
Katie 5:35
Um, I do. They don't say much. But I do think, I think especially with with our youngest of the group of three, that it, they feel a little bit of that, that we're constantly well seems constantly dealing with the younger one, and they are a little left, left out left behind.
Scott Benner 5:56
Do you think that would happen anyway? Without the diabetes, though?
Unknown Speaker 6:00
Probably. Yeah.
Scott Benner 6:01
Like, isn't that just sort of like a human? Yes. Like, I want my parents attention. I want it undivided. You know, it, nobody else counts. Even my siblings, that sort of thing. And
Katie 6:10
yeah, yeah. And this little one that came along? Yeah.
Scott Benner 6:14
Like it? Yeah, years later. And then you're just like, Oh, I didn't even think mom and dad had sex. Like, what is this? And you probably were at that age where they were probably looking at you. Like I said, nice people that bring the food into the house. Yeah. Yeah, I really do feel like that, that, you know, it's easy to point at the diabetes and say, oh, somebody is upset, because we're, we're paying more attention to that. But you know, I don't know, I never heard it too much from my son. But he would like, you know, once in a while do or say something that made you feel that way. And yet, it's possible that I have spent more weekends, like full solid weekends, 24 hours a day with my son, then most people who don't have kids who are running around playing sports like that do, right, you know, I've had a ton of personal quality time together. And yet still once in a while, it's like, oh, it's always hard. And I was like, right, how are you? out of your mind? I'm broke because of this baseball thing. Like, how could that be possible? Right? Like, yeah,
Unknown Speaker 7:11
our
Katie 7:12
our older ones play, especially our older two are real involved. We have a travel baseball for my son, and then club soccer for my oldest and it's, it's never stopped them from doing anything that yeah, that they were doing, or wanted to do. So.
Scott Benner 7:27
So I think I think the moral of the story, maybe is that kids just, you know, kind of rightfully so want the attention of their parents, right? Yeah, it doesn't really matter. What's taking it away at all feels completely criminal that it's happening. Yeah, but do you do? Is it in your mind? Do you try to not let it slide one way or the other? Or do you just do what you need to do with the diabetes?
Katie 7:48
We don't think about it. I don't. We just do what we need to do.
Scott Benner 7:53
Yeah, I feel like that's what we used to like, I think a lot of those things you spend your time worrying about and then you just look he looks super like suspect. That's a kid's word. Right suspect. Look suspect. Why do I say that? There were a lot of girls in my house last night. I must have heard that word at some point. But anyway, you look you look, you know, authentic. I think when you're trying to put attention in a place, right? You don't I mean, like everybody's got like a, an aunt or a grandparent who you know, like really doesn't like you that much. But they turn it on when they see you again. You're just like, This lady is playing the part of aunt that likes me. Why is the right a lot, a lot. A lot of 30 year olds laughing right now. I don't like my niece at all. And I do pretend to like her when I see her. Anyway, it's fine that you don't like her. She's probably nasty anyway. And those boys are dirty and they smell weird if it's a nephew, and yeah, I don't understand. Okay, so, here's why this one's gonna be fun. Katie, it's okay. It's because I don't remember why you're coming.
Unknown Speaker 8:50
I don't know.
Scott Benner 8:54
What? Why don't we look at that and see if we can figure it out. Everyone together, there must have been a good reason. Right? Okay.
Katie 9:01
I don't know.
Scott Benner 9:02
You don't know. Okay. So, at this point, I don't think it's any surprise to people that, you know, correspondence comes to me through email, through Facebook Messenger through through Instagram messenger. And I'm not great at keeping track of all of it. Right? Right. And it's easier if you email me because then I could just search you out and like, Look, but also when I when we get notes. I don't think much of it. Like I'm just like, Oh, this is cool. This person looks like they'd be good on the podcast and in and by the way, I've looked at people I thought, I don't know if they're gonna be good or not, I think Yeah, let's try and see what happens. Right? I've never turned anyone down. But I'm now seeing a note from you. Back to February of 2019. On Facebook, love the show helpful parents, new parents. Oh, maybe this was it. But I just left the windows office and I'm so frustrated and confused right now. Okay, I think this is going to be up because this happens to a lot of people. And your note was coherent. So I thought okay, so I thought, let me force this person into being on the podcast and explaining the situation. So when you sent me that note back there, do you remember that time?
Katie 10:08
Yes, I think so. Okay.
Scott Benner 10:10
Do you need me to remind you of what was happening to you back that I could do that right? You said February my, my daughter was diagnosed about nine months ago, at almost four years old. She's four and a half now. We got a dexcom, two months after diagnosis. And we've been on MDI, our last two agencies were five, three and five, one. We've used our own research, like books and the internet groups and everything, listening to all your podcasts to get from 14 and a half at diagnosis to nine A month later. 9.1 A month later, then 253 and five one after that. The question in my frustration is we recently got the Omni pod and we just walked out of the windows office to start the sailing trial. And I'm totally unsure of how I feel about it.
Katie 10:48
Ah, oh, when we started, yes,
Scott Benner 10:50
because they wanted you to set a target that was much higher than what you were accustomed to with MDI.
Katie 10:56
Right. Yes, that everything much. Yeah.
Scott Benner 11:01
And so you said, This is great. You should? Should I find a new endo or go rogue?
Katie 11:08
I don't know. I did not find a new endo.
Scott Benner 11:11
Well, I don't like naming the episodes are early on. But go rogue is a strong contender. That is what we did. Yes. Good for you. So I that is what I wanted to hear about. And here's why. In all seriousness, seriousness, not that I wasn't serious that I forgot why you were coming along. But now that I've refreshed my mind, this is a huge problem for people. You started an insulin pump. And tell me a little bit about what they what they set you up for and, and how that all went.
Katie 11:38
Um, we we were MDI for for a while, it took us a while to get we lived in Texas, and then we moved to Ohio, like, maybe three or four months after she was diagnosed. And so by the time we even got into a new endo, and, and got going with the pump, it was it was a while. And so we had figured out MDI really well, and we were getting, you know, a one c 5251 with with MDI, five, three, yeah. And so I had been so long, but I knew I knew we wanted the pump and what that would help us with so we went in and I guess we have like a CD that came in and looked at everything and started talking about how we would go about this and I just had a bad feeling that feeling Yeah. And just saying how we couldn't things we couldn't do or what we couldn't continue with or how things were not going to go it just telling us and it was kind of a Well, yes, we can like an our opinions. So we we went in for the sailing trial and she walked through all the settings and and how we were going to start and that you know be prepared she's gonna run a lot higher than you're used to giving us that that speech and we came home and like I I'm like for how long you know is a day two weeks a year? What are we just gonna run high for how long and just just really didn't set well but so that's when I you know, we did but we just listened through podcasts we read everything we could read and we went back I guess is we did sailing for like six days or something. Went back for the real influence start not at our way through the she set the the Omni pod how she wanted it. We said yes. Okay, great. And I don't think we even got to the parking lot before I took that thing and how to just did all the sessions.
Unknown Speaker 13:40
Yes, lower that higher.
Scott Benner 13:42
What was this guy thinking?
Katie 13:45
Right. And I still we change things all the time. But of course, but yeah.
Scott Benner 13:49
Okay. I apologize for a second. I have to walk down the hall and push a button on his phone. She's sleeping and I'll be right back. Okay. 45 seconds. you entertain the people anyway, you feel like it's good. Okay, do you want to sing just go nuts?
Unknown Speaker 14:02
No, no.
Scott Benner 14:06
I don't want to disappoint anybody that Katie completely chickened out and sat in total silence until I got back. That silence will give us time to talk about the dexcom g six continuous glucose monitor. My daughter has been wearing a dexcom for many generations now. And the G six is by far our favorite. No finger sticks, no calibration. It's lovely. And it gives you the information that you need to make great decisions about your insulin. What's your blood sugar? Which direction is it moving in? And how fast is it moving in that direction? Mm hmm. I know you're excited. That's crazy, right? The dexcom is at the core of how we manage our daughters type one diabetes. And I think you would find it to be incredibly impactful in your life. Some of the really exciting parts of Dexcom have to be experienced. And you can read more about them@dexcom.com forward slash juice box. But the one that I think is going to tickle your fancy is that you can share your blood sugar, or a child's blood sugar, or a friend's or assisters or a neighbor's. With up to 10 followers. You can do that with Android or iPhone. So just imagine that your friend goes on a trip to Madagascar. And you're here in wherever you live. Where do you live? Wisconsin, let's say you live in Wisconsin. And your friend says, Hey, check out my blood sugar. You know, if it gets too low, just throw me a text or call me or something like that. I'll be in Madagascar. No problem, you can do that. That crazy. So no matter where you are, at school, off on a trip down the block at a friend's house. Actually, you're going to hear Katy talk about how she handles it later with her daughter, and I love her system. So you'll you'll you'll hear more about that. Anyway. Dexcom you gotta check it out. dexcom.com forward slash juice box. It's the bee's knees. Omni pod is excited. They want to they're sitting around clamoring right now they're sitting in on the pod right now waiting for you to go to my Omni pod.com forward slash juice box. Because when you go there and you tell them hey, hi Omni pod, you'll type with your fingers. You don't really have to say any of this. You just thought a little form. But it's you know, basically, here's what you're saying. Please send me a free no obligation demo of the on the pod. So I can try it on and wear it or, you know, put it on my kid. See what they think. go for a swim with it. jog around the block, roll in the hay. I don't know what you do. But I think no matter what you're going to do, trying on the Omni pod in real life situations is going to give you a great feeling for whether or not you'd like to move forward with it as your insulin pump. My Omni pod.com forward slash juice box. Get that free, no obligation demo today. No Obligation means if you get it, you don't like it. No harm, no foul. Nobody cares. You're all good. They don't bug you afterwards. And if you want it, you just say hey, I'd love to keep going with this. I love the demo. Send me a real Omni pod. There are links at Juicebox podcast.com. And right there in your podcast player to all of the sponsors. Please support the podcast. Click on those links. We're going to get right back to Katie in just a moment really dig in and get going. But before we do, please allow me to remind you about diabetes pro tip calm. It's where all of the diabetes pro tip episodes from the podcast are housed in one place. In case you need to more simply revisit them or share them with someone else. Sometimes it's hard to tell somebody you know get your podcast app download find this episode. Diabetes pro tip.com. No es pro tip. All right, here comes Katie. My apologies. Did you recite their the preamble of the
Katie 18:11
Constitution or anything? No. But that that would have been a good idea. I didn't
Scott Benner 18:15
mean I just do that so that when I go back and edit I can amuse myself with what you did. or didn't do. Like she just sat perfectly quiet. I so Arden is there three days here of school she has off Wednesday, Thursday, Friday. The teachers call it professional development. I think they all go to like Atlantic City and drink. I'm not 100% certain
Katie 18:35
But no, we sit there and meeting. Oh, so you know
Scott Benner 18:39
these things? Because Yeah,
Katie 18:40
I was Yeah,
Scott Benner 18:42
we're a teacher. So professional development this week. And she's been she's been really tired the last week, she's like a lot of testing and things going on. So she's like, I'm gonna sleep in as much as I can. Right on. I thought I was doing a good job of holding her up. And then all of a sudden, about 10 minutes before we got on. She went from like 70 to like 66. And I was like, This is moving a little quickly. So I gave her a little juice and I tempt her way back. Because I didn't want it to. I didn't want to miss you know what I mean? Because you and right You and I were talking. So now I have like a 102 diagonal up and I got to turn all the time stuff back. Oh, so I I just had to do that. I apologize. Okay. Anyway, thank you. Okay, so you had a situation that I think most people go through and diagnosing why it happens. We can kind of all guess, you know, it's probably not that important. Like, why does your doctor do that like stone like, like, cuz this person came right out and said, Hey, listen, you're gonna be higher than you expect. wasn't just because of, you know, what you were used to your five one and your five three and all that stuff that was because they're like, I'm gonna push your settings up, but I'm not going to give you as much insulin as she needs. Right? And it's so that you can figure the whole thing out like, I think I understand that premise. But I don't understand not saying to somebody, hey, look, we're going to take this thing here, you know where you used to be at, I don't know, you were getting the equivalent of, you know, a half a unit an hour for bazel. But I'm going to knock it back down to a quarter. But in an hour or two after you get home, if she's high, why don't you move it up to like point three, five, and then wait a couple hours? And then if she still had to go to bed, and then get back to where you think you need to be it right, we'll set it here. And then you'll come back in a quarter of a year. And we'll look at it again. Right? That's exactly, absolutely senseless. And you were struck by it harshly enough that you were just like, I'm not doing that. But you have any idea how many people walk out there, into that parking lot, feel that hard that you feel and then just go along with it?
Katie 20:49
Yeah, we, we just we, I feel like we work too hard to, to get where you were and, and to just be getting something we were excited about that we wanted to that was gonna help even more and
Unknown Speaker 21:03
we just know,
Scott Benner 21:04
we just took this hill, I'm not walking back down it voluntarily.
Unknown Speaker 21:09
Right?
Scott Benner 21:10
I'm gonna stand up here with my flag and keep you off on my Hill. And it just really is. I think it's kind of it's suspect, Katie, that the doctor would do that, that they would, because did you make any noise in the room at all? Like, but we don't want to do that? Or what was that feeling? Like right there?
Katie 21:30
I did the first time. So we went in I don't know how many meetings of this before they actually give gave us a pump with insulin. But one of the first times I did kind of say no, we're why I you know, I asked why and told them we weren't going to do that. And basically, around around ended up just, again, nodding your head and saying, okay, you're right. Yes, I understand. And left and then just do what you'd want to do when you leave.
Scott Benner 21:57
Do you think that's what they want from you? Do you think they want to say, look, I told them how to be you know, quote, unquote, safe and safe right on them? Like, do you think they it has to be I cannot imagine why they would set these things. Like you said to give a kid less insulin than they're currently using. It has to just be covered there. I don't want to out where you live. But if I'm right, you're near one of the better children's hospitals in the country. Is that where you're going for your care?
Katie 22:27
No, we while we were in Houston, in Texas, we use Texas Children's when we were diagnosed, and then we moved. We're in Ohio now and we do not use a children's hospital. We just use a practice of pediatric endo practice. Yeah,
Scott Benner 22:41
I'm right about that Children's Hospital in Ohio, right? Yes, it's one of the better ones.
Yeah. Okay.
Okay. Why do you not use that versus the one you're using?
Unknown Speaker 22:51
It's just really close to our house.
Katie 22:54
We don't have to drive and park and all that so and I really like the the the end Oh, she's once we got over that she's been really really supportive since then. So cool.
Scott Benner 23:05
Yeah, well, and I think that's the next problem is that you also can't become adversarial than with them like you you don't want to start this process where you are now fighting with the end or you think of them as somebody who doesn't have your best interest at heart you really do have to kind of it's unfair, right? You have to see their side of it too.
Katie 23:22
And we you know, we smile and nod when we're there um, now we don't have to I was nervous when we went back Yeah, the first appointment after being on the pump to show her my to give her the PDM to see all this stuff we had changed. If how she would react to that, but her numbers were so good that she didn't she didn't say anything.
Scott Benner 23:43
Do you prep everybody before you go in the room? Do you have to hit him with him the Madagascar penguin thing you like just smile and wave boys? Yes like it just nod and smile. I wonder how much of life is being wasted by one person telling another person what to do when the other person has pre planned to ignore them must be so much of our waking like human hours are wasted on like oh today I'm going to explain this to a lucky young man who's going to benefit from my wisdom and and then that young man is my son who I've just told look if they tried to change your swing just go like oh yeah yeah, thank you. I can't believe I have the benefit of your beautiful and and then just walk away and you're doing it in the windows office My wife is clearly doing it around our I don't think she agrees with me about anything. She's like oh Scott, that's such a good idea. Oh, I should share that with those people on the podcast the the we were talking about I'm heading out kind of on the bits the talking you know it's talking time of year for diabetes like there's this Yeah, condense couple of months where I'll jump like from city to city and do this stuff. And and I sit around like I'd like to have something when I'm talking because people are trying to write like I wish I could bring like pads of paper with us that also made He had information at the bottom about how to like, subscribe to the podcast, like, it seems like a good idea. And then I looked into it and pads of paper were expensive. And I was like, well, I can't do that. And so we're looking through and I said, Well, here's a good idea. Like, I can get this eight and a half by 11. Like, it's from a printing company. They're incredibly inexpensive. And maybe I could set them up like worksheets for the talk, where you take notes on them and stuff like that. And I said, I think that would be a good idea. What do you think? And she says, Do you think people would take that home? And I'm like, who don't like me at all? Do you like, like you? Would I sit around like, you would never come out and hear me speak? Right? Just Oh, no, I don't think so. Having said that, she's seen me do it before and she seemed like she was unless she was just smiling. Oh, my God, Katie
Unknown Speaker 25:43
Weiland on.
Unknown Speaker 25:47
Anyway,
Scott Benner 25:49
I actually I'm kind of going over that fertile soil, because I think it is. It's an actual, it's a diabetes tool. It, it really is for your own sanity, you really do have to be able to like look through them and go, Okay, what you're saying right now does not apply to us. And so I'm gonna just, I'm gonna let you feel good about this. And then I'm going to go home, and I'm gonna I'm gonna, you know, try to diagnosis on my own because your doctor really is giving you it's boy, it's boilerplate advice, right? Because I'm looking at the rest of your note here. You said, you said they want to set our target at 150 in a range from 100 to 200. And we're not supposed to correct until 300. And I don't know if I should just send it back and forget it. Well, look at that. At that time. You were like considering not pumping? Because yes, definitely. Wow, that's something and I'm assuming that there's an endo listening right now who's Okay, that's so we can make sure you understand the pump and everything, the pump pump, what was that the pump and everything? Did my lips get stuck together. But I think that you had a perspective that most people don't come in with, like you came in with all of your research and the podcasts and all those things. You don't, you don't you didn't need somebody to dumb it down. And to push it to the other side of the safety zone. So that nothing would go wrong, I find this. I find this reminiscent of when people say to me, Hey, what's wrong with my graph? And I'm like, Oh, you don't have enough bazel. And they're, and they say, but I can't turn my insulin up. I'm always getting low. And I'm like, Yeah, but you're getting low, because your Basal is not doing its job, and you're kind of putting in too much insulin to try to overcome the food. And then it all kind of like pulls up at once and drops below, like, believe it or not, if you had more bazel you'd use less meal and so on. And right, you wouldn't get low later. But that's a weird thought leader to make, you know, because if you're getting low, why would you put in more. And that's not always the situation like everybody who like that's not just an easy fix. But it's a good example. And I wonder if this isn't the same thing. Like, people end up messing up. But it's not because of where their settings are. It's because of how they use the insulin I think.
Unknown Speaker 28:03
Right? Yeah,
Scott Benner 28:04
did you So did you have any trouble switching to a pump after you decided to do it the way you want to
Katie 28:09
know it's been great. We love it.
Alright, and see what's gone down.
Scott Benner 28:14
And everybody Katie's been on the show today. We really want to appreciate it. She's done now because she's just told the whole story in a sense, Katie, you're there's you're not storytelling here at all. You're just like, no, it's great. Thank you. I don't remember.
Katie 28:27
Well, we went we went home and and I like I said, I was in the car. We got to the car, I fixed it. I mean, we've had, we've had to go in and play with it more and more. But we've learned I think, listening to your, your podcast, all the different tricks and reading with our timing and with our bezels we've been able to really, really get things to where where we want them. So like I said, we've actually improved on our timing range, our standard TV, everything. So that's really great. It's been great. Yes, I how I don't know, it's a bunch of trial and error. how we do it.
Scott Benner 29:08
And there's nothing wrong with that. And it's funny, it's because people don't have success, because that's the exact thing that you need to do. And it's the exact thing that they tell you not to do. They're like, go home, don't touch this. Come back in March, and we'll look at it again. Right and that's the 100% the backwards, ya know, when we when we were diagnosed, and we left the hospital, I remember
Katie 29:31
getting the basic what everybody gets advice. She ran really high and we'd call in those numbers and 200 to 250 300. And they're like, Oh, it looks great. Like, no, but I feel like it is I don't think so. Right But But I remember the RCD in the hospital. She did say one of the things she she they were teaching was, you should give insulin and wait before eating food. So that Pre-Bolus idea was there, which were like, Okay, give insulin, wait 15 minutes and eat. And I want to say the first week or second week, we're out of the hospital we had gone out to eat, and I can't remember his mac and cheese or pizza or something like that, that she was going to eat. And so I gave the insulin, we waited 15 minutes, 20 minutes. And that was the first time we had a serious low because we had no idea that you can't necessarily Pre-Bolus all foods the same time.
Scott Benner 30:34
We're that that macaroni and cheese would then go in and not really impact her right away. Well, exactly. Insulin was still working so quickly.
Katie 30:41
And it I mean, we were in the car driving home, and I want to say she was low 30s, high 20s when I checked her finger, and, and I'm thinking what, you know what happened? I don't understand. They did what they said. But But that was the the turning point for us. We're like, well, we need to you gave us enough information. They I think they feel like to not kill you. But in a way, that's what that's
Scott Benner 31:05
what you're like, we're gonna have to get one of those foster kids back, I think
Katie 31:10
you gave us enough information to just be dangerous. So we had to really,
Scott Benner 31:16
yeah, right? Because that that generalized look your Pre-Bolus 15 minutes before you have to get some isn't. It's not the whole idea. And no. And so they gave you, you know, we talked about this all the time, like they gave you the first sentence, but not the rest of the explanation. And now there's going to be some CD out there is thinking like now, that's why we don't tell anybody. But that can't be the answer, either. You know, the answer can't be all or nothing. Right? You know, and if you don't know enough about Pre-Bolus, to explain it to somebody, then don't. But if but don't tell them, it doesn't exist say look, there's this idea that I don't completely understand that we should all look into together and try to make better like, Look, it's just like anything else. If I was an auto mechanic, and I didn't know how to change a fuel pump, and I took your car and you were like, hey, my fuel pumps bad. I was like at school, give it to me, I'll fix it like that, right? That's wrong. Okay. So you can't if you're a CD who's really good at 95% of the stuff you do, and you don't understand 5% of it, and it's important to other people will figure it out. And then so that you can speak to people well,
Katie 32:17
right. Oh, and I go over carb counting and all of that it just mentioning, glycemic index at that point would probably be
Scott Benner 32:24
helpful, tiny bit helpful. Yeah. Or, and explain it in a way. And you know what to I think, I think that Jenny being on the show, is incredibly valuable. Because Yeah, Jenny is a CD. And she does take those big ideas. And I I'm gonna tell you right now that those episodes are not scripted. And they're not even, they're not even laid out in like bullet point form. Like, I tell her, she logs on, she's just gotten off the phone with somebody else. And I say, hey, Jenny, today, let's do this topic. And she goes, Okay, and I can watch her clear her face. And then I start talking to give her time to settle into it. And then she then I ask her a question. And she begins to answer. She doesn't have to say, oh, let me go check with a colleague, or I'm not 100% certain, or anything like that. And in the span of two or three minutes, she can roll through what glycemic index is, in a way, when you hear it, you go, Oh, I understand what that is. So why why is it possible for some people to do it and some people not to do it? It's not, it's not rocket science. I don't want to overuse a stupid phrase. But it's, it's the idea that some foods hit harder or hit longer or hit shorter. Right? I mean, there now I just explained it, Nate's and would
Katie 33:42
have been great to know right, then. Yeah.
Scott Benner 33:45
So I think the bigger problem is and not to joke about it. Not everyone's a great communicator, that that really sometimes begins to be the issues like you could be sitting across from the CD or a doctor or something. Anybody who really does 100% legit understand what they're saying, and they're just not very good at explaining it to you. Right? And you wonder if that wasn't your situation, if that person who said Pre-Bolus 15 minutes, had all those other thoughts in their head and just didn't, yet couldn't, didn't? Wouldn't shouldn't like whatever reason couldn't get it ran out of time. Yep. Oh, geez. Look at the time. Get out of here. Oh, by the way, don't eat macaroni and cheese or pizza. Why not good. I would have been nice even if you would have got that. Because you probably did you fall in that thing where like, Oh, this is working. And then you can write you got all like, I'm just gonna say cocksure, is not actually something that needs to be believed that that's a real word. Right? So you got all like fully yourself. I'll probably end up leaving it anyway. Just I'm not 100% sure. But you got awfully yourself and you're like, let's do this now. And right.
Katie 34:50
Yeah, we, you know, we were starting to figure things out. We're Pre-Bolus thing. Got the Dexcom you know, our lines are looking good. And then the
When South
Scott Benner 35:02
ardens, first of two seizures when she was really like, just diagnosed like, you know, she was still like two and a half years old. Definitely came from that. Like where I was just like, this is easy. Why do people make a big deal out of this? We should try Chinese food. Someone call 911. How does the right How does the glucagon work? Well, it seriously was like that. And it was really because things had gone so well. That it just felt like, Oh, this is easy. I did what they said. And it worked. Except back then. Imagine that her a once he was like eight and a half or nine. And I was still thinking like, I was doing terrific, because sort of that's what they told me it was okay. Right, you know, so I had a really good feeling, but I thought it was doing great. Now I look back in hindsight, I was doing terribly. I didn't understand any of it. And I should not have been in charge of giving it two and a half year old insulin for Chinese food. You
Katie 35:58
know, that's exactly how we felt. Really? What did we just do? And of course we correct and then the mac and cheese hits and now we're 400. And yeah,
Scott Benner 36:08
drinking juice on top of the macaroni and cheese. It's gonna hit in a little bit, and then you would listen. in a million years, would you have had the nerve to give her more insulin? effa. But not at that point. No. No. So you let it ride all the way up and sit there? Do you remember if you ever corrected it? Or did you just wait? Oh, I did.
Katie 36:25
Yeah. Well, we had a running around jumping on the trampoline. I'm like what it was, it was not budging. It took awhile. That moment, we're like, okay, yeah, we know nothing about this.
Scott Benner 36:35
Do you? Do you ever like I, you know, you know, when people put voices in the pets heads, like, you're like, Oh, my dog's thinking this right now, when kids are really little, you do the same thing. And there were times where I would look at art and think she's got to be looking at me thinking how did I get stuck with this? Yes, this guy is flat out gonna kill me. But I can't reach the doorknob. And I don't know how to drive the car. So I'm stuck hoping that he doesn't. Which is really parenting, you know, on every level just gets a little amped up around diabetes. So let me ask you a question here. As I look through our correspondence back then from February, I see that I came in with some classic advice, which of course was not advice even though we were not on the podcast. But I just said to you, I said my thoughts are simple. You're a one C and your standard deviation are spectacular. I would not change what you're doing. Do not think twice about what anyone thinks of you. Follow your heart on this. What they've done will jack up your blood sugar's excuse me what they've done will jack up your blood sugar's Have you bolusing constantly and cause lows. And then that was it. You kind of came back and thanked me for the response and everything. And then I think, yeah, so you still looked a little like, you looked a little dicey and your next response. So I said, Hey, listen, you'll you'll be fine, you'll be fine. They probably set those safe limits for everyone. And they'll probably be thrilled if he figured it out. And you don't need their help. And then I said, I'm here if you get stuck, but here's my question. Were they throat? Or did they look at you cross?
Katie 38:12
Oh, the first.
The first one bat. Okay, so Oh, I remember. We went back and saw there's two or three windows in the office. I'm not sure we typically just see the one. But I with the schedule. The next appointment was with a different endo that we normally see. And I don't think he had he'd never met us. just looked at the favors when we were out of there. Like it was a non issue. So
Unknown Speaker 38:39
Oh, really just a
Katie 38:42
different guy.
Scott Benner 38:44
You're You're cagey. Yes. But But when you got there were your numbers more like what you had prior to pumping by then?
Katie 38:53
Yes, we had dropped. I think at that point, we came in and dropped about a 4.9. And, and he gave us some he wanted to change the correction factor or something. And we smiled and nodded and said, Okay, no problem. And, and, and that was it. And we left. He didn't know us. We've never seen him since
Unknown Speaker 39:14
I went kind of avoided the situation.
Scott Benner 39:16
So I get this feeling sometimes, like I maybe I'm speaking out of school, but this is my interpretation. When Arden goes to the endo, you know, they come in the door. And there's this like tension, like because they're running from room to room doing this thing over and over again, where they're probably having experiences where they're mostly going, Oh my God, this person's like gonna die. You know, like, I can't I can't get through to them. And I don't know what to say about it. So this is nurses, when they come into our room. I see their shoulders relax, everything becomes friendly. They're sitting down there and we're sitting back in chairs instead of sitting in chairs, and we have this nice little conversation. How are things? Oh, they're good. What have you been up to? We change this art. had this happen her period really was tough in this month, but we fought back, you know, blah, blah, blah, then they usually look at me and they go, where do you expect her agency to be? And I go, and oh, no, I always get higher. Like, yeah, and then Arden goes, he always thinks it's gonna be higher. And then it comes in the room, they look at the paper and they go, alright, it's fine. You have any questions, any prescriptions? And then that's it. I always think like, I'm there, like, providing them like with a 15 minute like vacation from, from the whole thing. And I imagine what you said was similar. Like, the guy probably came in and looked at the papers. It's like, ooh, I don't have to
Katie 40:34
do anything. Like, right. Yeah, five minute appointment,
Scott Benner 40:38
either. Now, here's your scripts. I'll see you later.
Katie 40:40
Yeah, God, what do you do? And then we've been back a couple of times since I believe, and two or three times and they were back to the original lady, and she's very happy with, with how it's going and has no, no complaints. And so I think I figured out that we know what we're doing
Scott Benner 40:58
fairly safely. That's excellent. That's excellent. I've scrolled down to the last time you sent me something. And I realized you're not talking more than I thought we had. But, um, but there's something really interesting here that I would love for you to go over and tell people how you took care of it, but you had like incredible anxiety coming, like thinking of changing from MDI. Yes, and was that why was that first of all,
Katie 41:23
I just think we were comfortable. I just knew what I knew what I was doing. The poor kid was getting, you know, six 810 15 shots a day depending. But, but I knew what to expect. I knew what was going to happen. When I we, she was going to eat a certain meal, I knew how to dose for it. I knew when the timing of when she needed those shots, and it was just rolling. It was just working. And we're, we like you said for kids, it's busy, we travel a lot. We're always Out. Out and About we eat out a lot and it just it worked. And so I was I knew in the back of my mind how much more freedom we were going to have with this pump but to go in and mess up everything I knew and had worked so hard to learn. What made me really nervous. Yes.
Scott Benner 42:14
And so what you did was you tried to like educate yourself before doing it.
Katie 42:20
Yes. Before we I did everything I could to listen to anything any podcasts that had anything to do with it. I read anything I can find to learn learn I was trying to figure out you know, okay, exactly what put basal rate Do we need to run based off what she's getting? So I already knew that going in what what I wanted to set it with to start with and of course it was much higher than what they wanted to but like I said, we fixed that right away and then have made made adjustments you know, from that point, learning listening the pro tip series has helped a lot setting basal rates we probably test those out once every week or two two weeks or so just to make sure we're still where we need to be plus I find that especially if we test that night she will we have a lot less real flatline overnight normally, and I can sleep so yeah so so those are my favorite nights
Scott Benner 43:23
to stay good to stay ahead of it so that you can have those night's sleep by the way I think there's research out now that says lack of sleep is a precursor to Alzheimer's which has now got me worried well I'm gonna have that Yeah, well, I better I better Can I bank sleep like can I get extra now but but your point is if you keep ahead of those bezels and yeah, then you get all that it's like free time overnight right? Yeah, there's no you know for the most point and your your daughter's younger too so there's not a lot of there's not a ton of growth spurts going on yet like she's probably just growing pretty consistently and right. So this is a nice time like I always say like steel you're still you're able to see overnight definitely now it's this it's a third of the day where there's no food no activity you know and you can you can get great steady blood sugars that help offset when you do have a problem during the day and then when you do have something happened during the day you don't have to be like oh my god like you still think okay, well all right, I'll fix this and I'll get it back. But it's not the end of the world this spike isn't gonna take us to like a nine a one say it's gonna take us to a five and a half maybe. Right right. I listen.
Katie 44:34
No, we we have date I mean she's, she's in school now she's you know we have things happening today we we will spike every now and again and lose control but we do get it back and and even even those don't, they don't seem to affect the ANC much and they don't even our standard deviation is fine. And we do mess up like we miss a lot
Scott Benner 44:59
of course. No, yeah, I don't think that, um, I don't think anybody doesn't honestly I do. And Arden, you know, sometimes it's like, oh, once you say about insulin, I didn't do that, you know, like that that's still, that's still happens, it happens that it happens, everybody should probably expect it to happen. You should not get comfortable with it and then just let it go. But you should expect it to happen and you can't like freak out, you sort of have to keep going. I think this is you really did something kind of special here. Because you may not believe it, because it's just your life. I mean, you believe it because it happened to you. But this is such a common feeling for people. The idea of change in general, is difficult. The idea of changing from something that you really have a handle on that That to me is just like downright frightening. Like I used the word anxiety i would i would have been scared like when we move to a pump. I was excited because it's not like we were having some great success on MDI, you know, I right, you're doing you did with MDI, a million times better than I on my best day with MDI ever accomplished. rodden. So mean, you had that going? I was just like, Yeah, great. Let's try something else because this sucks. But it didn't suck as much as I sucked. Honestly. No, no, seriously. There's no no, you know, back then. I mean, we didn't have a CGM. We had a meter. God knows how accurate it was or wasn't. And I really wish people could like, feel like Arden's diabetes supplies. Were a vial of insulin, a couple of syringes, test strips, and this meter that was like an inch and a half long and an inch wide. Oh, that's what we carried with us. That was the whole entirety of it. Yeah, you know, and it Go ahead, go crazy. See what you can do. And what you could do was what you know what we did, which was count the carbs, put the insulin in weight a little bit, eat, weight, test, weight test, in jacked, put it around for a nap, ask her to go run around, you know, right? Pray that time would stand still. So the next meal wouldn't come up again, and want a snack?
Unknown Speaker 47:11
Like,
Scott Benner 47:12
you've maybe no idea how many times in my life, I've thought in my head or mumbled out loud. Oh, god, she's gonna eat again. Oh, she's hungry. And you look at the clock and you go, Oh, of course she is. I'm hungry, too. It's noon. It's five, you know, but it just felt like, Oh, dear god, it's time to eat again, like this can't just keep happening over right over can it like, it has to stop at some point. And it didn't, you know,
Katie 47:39
and I think when when she was diagnosed, so young, I the anxiety hit right then that oh my gosh, she's gonna have all these complications, who, you know, diabetes her whole entire life basically. And so that fear of high numbers almost like setting right away and so that we, you know, I'd see anything over 120 and I'm freaking out. And we got to get this down. And so I think that kind of drove the that in, almost killing her with mac and cheese to to get on the get on the research and start listening and finding you and and figuring out what what we could do to get a handle on this. I still thinks we have moments of honeymoon, like spurts of days when usually kind of comes in twos or threes, when her pancreas decides to work, and we fight lows, but a lot randomly, but they and then it passes and we're back to the old old settings. But I think one of the main tips we got early on in the podcast when when we started listening was you know, we could catch a falling blood sugar so easily. Then sit and stare at that, that high number for all night. And so once we learned and we're comfortable with like, hey, juice works, or these jelly beans will work. Then we really that's when we could could kind of go in and hone in on all those numbers. And if it was too much, it was too much and we fixed it. Yeah. And
Scott Benner 49:08
and she's fine. That's excellent. That happened to us last night really Arden like because the the girls don't have school the rest of the week. It started with Hey, Bella's gonna come home with me after school. And I was like, Yeah, sure. Bella, come home. And then I went upstairs to work on my presentation for this weekend. I'm doing a you know, by the time this comes up, it'll have been six months ago. But I basically am going to do my jdrf talk with an extended q&a locally. So like this free thing for people and we've got like 50 people coming already, just from the podcast, just saying out loud on the podcast, which was really cool. And so I'm putting my presentation together and everything. And I see a car pull up. And now Nadia is here. And so I'm like, Okay, I see where this is going. And then I hear some I hear this Bang, bang, bang, bang, bang, bang, bang, loudness and I'm like that sounds like so like I can tell her friends as they're coming in. Right. So now. Now in my mind, I'm going art in art. Didn't I brought Bella home I saw Daniel, or Nadia come in, so I can hear Sandra. And then sure enough, Olivia came in. I was like, Yeah, they're all here now. And so like, everyone's here, which now means we're on the hook for dinner. Like, I knew that. I'm like, oh, we're gonna have to feed these girls. So I get the call from downstairs, like, you know, um, you know, can you come down, I come down and Kelly's down there. And she's like, we're trying to figure out what to get the girls to eat. And I was like, and she goes, it's between pizza and Chinese. And I said, well, Chinese is more expensive. So get pizza. But somebody was like, buying all these girls, Chinese takeout is gonna cost like $200. And pizza will be 35 bucks. So we're a pizza. I've made the decision for everybody. Congratulations. And the girls are just nodding like, they really don't care. That's the key. By the way, for any of you people out there. You knew parents are like all into giving kids choices. They don't care. It sounds like it's a pizza. And then it comes home. And we bolused heavily heavily for it. And because there were fries, and there were a pizza, I saw broccoli was there. And I'm like, Oh, good. There's some vegetables. And then, you know, like, there was a cheese steak. And people were cutting up in a little sliver. So I'm like, I don't know what's happening. So I was like, really aggressive with that. And maybe like, an hour later, she was just bright it like 73. And I was like, This is not gonna hold. Like, I know, it's not gonna hold right. They said the minute it tried to drift down, I had seen these, um, they must have gone to the grocery store all of them together, there was a big bucket of eclairs in the, like, little miniature eclairs this one a lot. Two of these girls have their period right now. Just I won't say which ones. And.
Unknown Speaker 51:39
And so, thank you,
Scott Benner 51:40
you think and I was like, so I see what's happening here. Right? So I just texted our nose a crunchy grab a couple of those eclairs because they're a little tiny ones. And, and she's like, okay, she ate them. And I think maybe 20 minutes later, when I didn't see it move the way I wanted it to off of the food. We like say, hey, kill the bazel for like a little while, you know, and let's see what we can do here like turn insulin off for a little bit. So she did write and then we caught it. And it was good. And like it never got low, but it's what you were talking about. Like I'd rather stop a low than a high like I was just like, obviously too aggressive. But right, not that over. And crazy. Like with all that spread of food out there had just eaten six more bites of something else. I would have been Right. Right. You know what I mean? Like so I'd rather play in that pool than the one that the one that that has a 250 or 300 all the time and scampering around giving extra insulin and all that.
Katie 52:41
Right. And we definitely have a carve like that I'm like, type out a little more than I think it is just just to be safe. Yeah. And then we'll we'll fix that if we need it. And it's it. We've had to convince the the, I guess, nurse, or whoever's at our school, we're working with her that that is definitely the better way to go. Then. He always wants to back off on Infinite like, No, no, add a few more. Add another half unit to that, oh,
Scott Benner 53:07
I hear what you're saying. But I'm just gonna reach over here with my foot and stomp on your foot right on the gas pedal. And there we go. Keep going. No.
Katie 53:14
Don't you don't want to go down that road. Yeah,
Scott Benner 53:16
if we're gonna get low, I'm gonna make her low, it isn't gonna happen by mistake. Right? And actually to, it's funny, because I'm now thinking about my presentation. That is really something that I talked about when you know, when I only have an hour to take a person who's never heard me before and put them in the head of the podcast, like, there are certain things that I that I hit on. And one of them one of them is I'm just like, you have to be aggressive like you You, you need to punch first. Like, you know, because at least what happens next, you know, you did, right, right. It was kind of put into boxing terms. I'm like, you know, if you get into a fight, and you curl up into a defensive position, you put the other person in charge, like you're putting the you're putting the insulin and the food and the carbs in charge. Like it's making the decisions, like at least if you swing with that with that bolus, and you hit first and you're wrong. And you get lower, you know, you cause that like you have cause and effect I did this and that happened. So now I know how to fix it, which is what I did last night with Eclipse I was like Oh, I know what I did wrong. I'll just add this that will fix that. But had I backed off or been like you know erred on the side of caution. then all the sudden that arrows going up the blood sugar's jumping up. I don't know why. Like Like I have no idea why I don't know how do I how much more
Katie 54:35
when people ask that ask us all the time we're like well, how did you know more to correct with them? Like I
Scott Benner 54:39
don't know. Do you actually say I don't know more insulin because I
Katie 54:43
don't know. Yes more a lot more.
two arrows up not good.
Scott Benner 54:47
Yeah, yeah, right. I see you Katie. You are like my Luke Skywalker in this situation. I'm Yoda. So you you really are talking the way I talk about it. You're like, I don't know. You're two hours bad.
Katie 55:00
We moved. So we were living in Houston, we saw the end of one time and moved and then didn't see anyone for six months. So your podcast was how we learned to take care of diabetes. So
Scott Benner 55:11
I'm both grateful and sorry, that's Yeah,
Katie 55:14
we you know, there was okay. My husband's like, you want to do what from you heard it on? A what?
Unknown Speaker 55:21
Like, yeah, I think it's gonna work. Yes, kid.
Scott Benner 55:26
You, she was probably like, he looks so stable when I married you. I didn't really like what was coming, but you're not in charge of the kids.
Katie 55:34
The podcast guy says, To
Scott Benner 55:37
do this, listen, I don't know if you realize this or not, sweetie. But that man had to buy a microphone and have a computer to get these thoughts to me. So it was he's really all in on it. Yeah, at that point, when you were listening to the podcast, I was on a $200 microphone. So the my entire in on the podcast was $400. So it cost me $400 to tell you how I use insulin at that time. But my point is I had no, like, I could have been a lunatic.
Unknown Speaker 56:06
Right, right. And we had juice boxes. I was ready.
Scott Benner 56:10
You really are. This is the greatest thing ever. Now I realize why you're on the podcast. Because as I look through our notes at the end, we ended up speaking back then on the phone. Yeah, so something happened on that phone call. And by the way, I don't want to seem bizarre about this, because I really am not. But I do really talk to a lot of people. And so I'm not gonna lie to you this morning. I looked at I was like, Katie, Katie, Katie, don't remember. And I tried really hard I as Katie was getting online. I'm like, Hey, where did you reach out to me at first? She told me I was like, oh, maybe I can find it there. And I started looking. But these conversations, like yours in mind. I'm sitting here now even though I don't fully recollect it. I believe that I must have had such a good time talking to you on the phone that I The last thing I must have said to you was you should come on the podcast?
Katie 56:59
I think so. But
Scott Benner 57:01
yeah. So and I was right, because you're delightful. And this is a good episode. I can tell. I've been doing this a while. Trust me by 53 minutes in when they're not going right. I'm like, Oh, I have to edit the hell out of that one. But, but But no, seriously, that's never happened. And I'm actually I'll probably edit that out because I don't want people to think that happened. But But nevertheless, it really is. It's very big to me. You're like the regular. You're like the regular version of Jenny to me. And I'll tell you why. Because when I first had Jenny on the show, and she was just on as a guest, when I got off, I thought, Oh, I love the way she talks about this. And you know, you could say that that's ego because she talks about it the way I do. And I just liked it. Because she because she was saying what I was saying. But I like I love your attitude. Like just now when you said that you're like two hours up? Oh, it's almost like, I wish you could hear it my head. It's not even like words. I just hear the I see the arrows in my brain was and I'm like, Oh yeah, insulin, how much? How much? I don't know more.
Unknown Speaker 58:08
What a lot more. Oh, a lot more.
Scott Benner 58:11
It's moving really quickly. Do it again. You have no idea how many times is Arden is bigger now. So she uses more insulin than right in the past. The other day I saw them. I was like, I got a diagonal up. She got a diagonal up arrow. And I was like, I texted him like, Hey, you got to put in this much insulin. And she's like, Alright, I did it. She put it in. And five minutes later, the change that happened with the with the number I was like, Ooh, that wasn't enough.
Katie 58:36
Okay. 20 point jump.
Scott Benner 58:38
Yeah. So I texted her back. And I was like, you know, do do more. And here's how much more and she goes, the other bowl is still going in. I was like, Well, when I get done, put this in, right. And she's like, you're a pain. I'm like, I'm not a pain. It's not me that ate the muffin. But I don't say any of that. I just oh yes. I'm a pain, sweetie. I'm so sorry. And you know, like apologize. And, and there's more put more in. And then she's like, she actually said to me, she goes, this seems like a lot. And I went it is. And if we're wrong. We'll we'll try to trade off for bazel later. Right, you know, and that's it.
Katie 59:11
Well, she our little one. She runs around the neighborhood with the friends and the phone and we see stuff like that. We're like, oh, what's going up, come back? Well, bola third. She runs back off. And we've had to do that five minutes later call her back. She's like, ah,
Scott Benner 59:25
I just went back here.
Katie 59:27
Yes, we, you know, but with dexcom she, you know, she can run off she goes off with we can't text her. She can't really read but we can call her and, and we can get she'll do what she needs to do. We've also taken that aspect and put it to work.
Scott Benner 59:44
It would just look her in the face and be like, and he's learned to read pretty quick here.
Katie 59:47
Yeah. I send a red.at scale.
Scott Benner 59:52
You guys do stuff like that? Yes. Oh, that's brilliant.
Katie 59:56
Code. Yeah,
Scott Benner 59:57
yeah. red.is Skittles. Yep. So Do you use that in a moment when you're like, Oh crap, she's gonna die before I get to her.
Katie 1:00:05
yet. We'll call in that situation.
Scott Benner 1:00:08
Hi, sweetie. Yeah. Tell Billy to be quiet. I want to say something really important right now. Drink the entire juice shut your bazel off all the Skittles. Mommy's running towards you right now.
Katie 1:00:18
Well, we'll send one of the older kids with a Capri Sun. We're like a meter out in the middle of the road.
Scott Benner 1:00:23
there and drink. That's brilliant. Your children are like carrier pigeons
Unknown Speaker 1:00:25
for dying.
Katie 1:00:26
Yes. Yes. They don't love it. But you know, they don't love it. Work. Do you love
Unknown Speaker 1:00:32
paying for their clothes and boarding and food? No.
Unknown Speaker 1:00:36
Take the damn Capri Sun run up the stream.
Unknown Speaker 1:00:38
Yes, go. You know what?
Scott Benner 1:00:39
That's a lot easier than going to work and buying mashed potatoes and making them and then watching you not eat all of them.
Unknown Speaker 1:00:47
Exactly. Is
Unknown Speaker 1:00:48
that to make a person murderous, just in case right in your shoes. You decide you don't like? Yeah. Oh,
Scott Benner 1:00:53
my feet got bigger again. I'm like you are lying. You don't like them now that you got them home. You know, you can't cop to it. You're like, I know what's happening. They're horrible.
Unknown Speaker 1:01:04
Yes.
Unknown Speaker 1:01:05
Okay, you and I get along great. Yeah, this is nice. Did you come see me when I was in the law? I spoke there two years ago.
Katie 1:01:13
in Cincinnati. It wasn't either. Yes, we had just moved here. And so that was that was kind of how we learned
Unknown Speaker 1:01:22
that how you learned about the podcast? Uh, yeah, I think so.
Scott Benner 1:01:26
Wow. Look at you. I love that you kind of don't know your life.
Katie 1:01:29
I know. It's a blur, though.
Scott Benner 1:01:31
I've never I've never said this to anybody. Like I've never been overtly like sexual at all on the podcast with anybody because I'm married. And so you, but it's hot. A little bit how you don't know what's exactly happening? I don't know how to put that another
Unknown Speaker 1:01:44
20 Kids What's going on?
Scott Benner 1:01:47
Okay, you know what it is? I realize it now. You seem like you have a drink and a half and you
Unknown Speaker 1:01:53
and I don't drink.
Unknown Speaker 1:01:55
But you don't mean like you're it's like you've given up just a little bit?
Katie 1:02:00
Yeah, yeah. Well, cuz it's either that or I don't know what, but not good.
Scott Benner 1:02:05
No, I really believe I do believe that. It's very healthy. I mean, not not the not the drinking. But the that that kind of feeling like, you just have to let some of it go. Like, I like that you don't have recollection on everything. Like I seriously mean that I'm similar in that I, I don't hold on to things, like too tightly. And no, if you occasionally when you guys are listening this you have no idea that it's not easy for me to like, sit down and really go Oh, alright, that is what happened. Here's what happened next. My brain really is a little more like freewheeling and right? I'm impressed with myself when I when I can tell a story. When I get done. I'm like, Okay, this is what happened. I didn't even have to make up. I didn't even make up anything there at all.
Katie 1:02:47
Oh, that kind of is bad. In the middle. You know, you get done with a meal that you've made all these adjustments. And it worked out really well. And like know, how much did I give there for that? Like, I don't even know
Unknown Speaker 1:02:57
that I ordered?
Scott Benner 1:02:58
Pardon? So like that. Like, sometimes I'll just be like, Hey, what's it asking for? And she'll put it in and then five minutes later big how much when she was I didn't look? Right. Like you didn't even see it when you push the button. She knows I did. But I don't remember, like, okay, and to me a little bit. That's a comfortable, healthy sort of vibe around diabetes. Like you're not constantly running around with numbers in your head all the time. And you know, it's one of the biggest thing, right? Like, it's from this presentation that I'll start giving, you know, all over the place. I'm going to tell people like, everything I just said probably seems incredibly complex and time consuming to you. But it really only is not. It's not Yeah, no, in the beginning, maybe a little bit but then boom, right? Although in fairness, you and I appear to be the same person. So it's possible. You're just like, wow, I found my doppelganger who already understands diabetes. I'll just write do what he's doing.
Katie 1:03:55
more insulin. That's all I need. I don't need a number.
Scott Benner 1:03:59
By the way to tell your husband I agree with them. Yeah, you're insane to listen to me.
Katie 1:04:06
Well, on the school nurse, it's funny because the pump I guess, has a carb ratio in it. And she I have to send her the number of carbs in the lunch or whatever to put in and I have no idea. I just know how many units the lunch will take. And so I'm having to do calculations now going okay, well, I would give it this many units. How many carbs is that? So I can send the lady how many carbs to put in to the pump? I
Scott Benner 1:04:29
don't know how to think of it that way.
Katie 1:04:30
Oh, my God. Oh, no. Just give her two years.
Unknown Speaker 1:04:35
Yes,
Scott Benner 1:04:36
please. Stop. I'll tell you that is that it really is it's heartwarming to me. I want you to listen, all of you do what Katie's doing, if you can? Yes, she's exactly picked up what I've put down into use the 70s vernacular. I really am like super, like it's embarrassing. After talking to you for this That I didn't remember talking to you before. Like, I feel badly about that. And now that it's happening, but really, really amazing like how you did this is astonishing. And can I ask what your daughter's one sees right now?
Katie 1:05:14
Um, we just went in October and she was 4.8.
Scott Benner 1:05:19
Jesus with that one. Do you let her eat or she she's,
Unknown Speaker 1:05:22
he eats all the time.
Scott Benner 1:05:24
Yeah. And no, no restrictions to her.
Katie 1:05:27
No no restrictions and she eats this on Fridays at school, they have a they call it a snack cart, it is a dessert bar. Why they have the dessert bar feel like she she has her popsicle with lunch every every Friday at school, she eats IV nothing but carbs. I feel like but she's you know, we are she's good about ordering of foods, you know, eat the protein first. And, and so that's kind of been ingrained in us. We don't have to tell her to she just does it. You know, but just influent we just keep it Keep it coming.
Scott Benner 1:06:06
That's really seriously your this is very, it's I mean, we joke around a lot in this hour. But this is incredibly amendable. Like I that you've picked this all up this quickly, and put it into play. And came overcame the anxiety of the switch from MDI, to pumping. And, you know, share this with everybody. I think this is really cool. Because I think you know what I'm what I'm gonna say to the people listening is is that, like Katie's vibe is the goal. You know what I mean? Like if you can get somewhere near this, this is going to be a healthy way to roll through life with type one.
Katie 1:06:37
Right? And it doesn't it does not take time. I mean, it did at first like you said, but we don't think about it. We glance on my phone send attacks give her a call whatever we need to do and yeah, I don't think I don't think she has any idea that her life is much different. With with diabetes, she eats with Pre-Bolus She doesn't even know what I mean. I just run in hit her whenever I need. I know it's about 20 minutes before we're going to eat. I don't think she even is aware of of the inconvenience this could be to her she has no idea.
Scott Benner 1:07:10
You're like diabetes Wonder Woman.
Katie 1:07:11
No. But like I said, we miss we screw up Don't get me wrong. I mean, I don't know how you
Scott Benner 1:07:17
wouldn't make it such a Yeah, it's such an up in the air thing that you know, every once in a while. You just Yeah, right. Yeah. But oh my god, seriously. So I look I'm I'm gonna go because if I don't, I'm gonna I'm gonna ask you to leave your husband and come meet me somewhere. Right? Really like Katie and I, you know what would end up happening right is like two weeks into it. We'd be so similar that we'd get nothing accomplished have no ability to make money and have to like leave.
Unknown Speaker 1:07:46
What we do yesterday
Scott Benner 1:07:48
would just be a complete disaster. Like, like five seconds. Yeah. Oh, my God, my wife so counterbalances all of my stupidity
Katie 1:07:57
got on someone different.
Scott Benner 1:07:59
Oh, my God. Absolutely. Katie, seriously, I really appreciate you doing this. Thank you so very much.
Katie 1:08:03
Well, thank you. And thank your your wife and Arden and just for put it letting I mean, everything being put out there. It really helps other people. So I appreciate them for
for letting you put their life out there.
Scott Benner 1:08:18
How do you How did you know that? Maybe they're maybe they're locked in a closet.
Unknown Speaker 1:08:22
I can tell.
Scott Benner 1:08:24
Maybe they don't really exist. Maybe I'm just really good at making up what diabetes is like,
Katie 1:08:28
in our whole Yeah, we base our whole
Unknown Speaker 1:08:32
medical care off.
Scott Benner 1:08:34
By the way, I that would be a fantastic review for the podcast.
Unknown Speaker 1:08:40
Yeah, I'd appreciate that. If that popped up online somewhere.
Unknown Speaker 1:08:43
I believe that.
Scott Benner 1:08:46
Doctors Hmm, I just listened to this guy. I random met on the
Unknown Speaker 1:08:50
internet. Don't need an endo. Never said eyes on him before.
Scott Benner 1:08:54
He might not even be real. It's hard to tell. He says he has a daughter. But you know, he doesn't really share pictures ever. She might not exist. But trust me, she's here. I can feel the anxiety in my spine from her being alive every day. Yes. All right. All right. Well, thank you. Thank you. I really appreciate you huge thanks to Katie for being a good sport and sharing a very real story about what it's like to move to an insulin pump. Thanks also to Dexcom makers to the G six continuous glucose monitor. And of course ardens insulin pump the Omni pod, get your free no obligation demo of that wonderful tubeless insulin pump today at my Omni pod.com forward slash juice box. The diabetes pro tip episodes or a diabetes pro tip comm are right there in the feed of your podcast player. Thanks so much for listening. I'll see you soon.
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#356 Dan is a Mensch
Dan is a T1D father and podcaster
Dan is the father of a T1D who wants to help people living with type 1 diabetes.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:05
Hello, everybody, welcome to Episode 356 of the Juicebox Podcast. On today's show, I'll be speaking with Dan. Now Dan is the father of a child with Type One Diabetes. Dan is also a fellow podcaster. He is a very popular podcast and he's good at talking. So there's two people here. What am I trying to say? They're gonna be a lot of words spoken in the next hour and 20 minutes or so however long This episode is. I had a great time I was in a mindset when I recorded this about thinking about helping people. So the podcast sort of follows that vein a little bit. It's also just a terrific conversation about what Dan has learned about Type One Diabetes so far. I'll ask that you please remember 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 healthcare plan, or becoming bold with insulin. As the episode starts up, it's interesting that it was recorded just a few months before the Coronavirus COVID-19 hit. So there's a story about what it's like to have your kids at home during a school strike. kind of feels quaint at this point.
This episode of The Juicebox Podcast is sponsored by the Contour Next One blood glucose meter and touched by type one. If you take a moment to visit touched by type one.org, you'll see programs, awareness campaigns, and ways for you to get involved. Touched by type one has programs and services for those living with a daily reality of type one diabetes. They offer supportive community with many interactive programs and creative resources designed to empower people with type one to thrive. Touched by type one.org.
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Dan Libenson 3:52
How are you? I'm good. We're at the end of the second week of a school strike here in Chicago and I have two teenagers walking around upstairs. So hopefully, we won't be making too much of a racket
Scott Benner 4:04
out of their minds.
Dan Libenson 4:06
They're very happy. I'm out of my mind.
Scott Benner 4:09
I was me get this right, in fourth or fifth grade. And my school went on strike. And it ended up being the longest teacher strike in the history of Pennsylvania. And we were out for a little over three months. Wow. We came back watched. My God filmstrips of was that he was like I can't believe I can't think of this as a big kind of Persian guy with a sword. No shirt would like go into a cave and take jewels and stuff like these were very popular like television movies back. I can't think of it. I don't remember that. And I think not Alibaba, something very close. Right. Okay, we'd watch that. We watch those for two days. And then no lie. It was summer. Kisch
Dan Libenson 5:01
and how do you think that impacted your life?
Scott Benner 5:04
I know exactly how it has actually. Yeah, I am an incredibly big fan of the television show mash because of it. Interesting. That's the only thing I know that came of it. Although I've never seen my parents happier than the day the the strike was announced this ending, they genuinely look deleted when, when they realize what you're doing. I mean, three months was it through people's lives out of whack? You know?
Dan Libenson 5:28
Yeah, well, I work at home. So it's, it's like every day is take your child to work day.
Scott Benner 5:33
I'm just telling you, I can. I just recently did it. I watched every episode of mash while I was while I was, you know, cooking and doing things like that. But I know almost every word of every episode, like as soon as it starts, I'm like, Oh, this is the one where because they ran ad nauseum on television. And at some point we got, we were just we were out of things to do kids even stop playing with each other. It was just like, we were like, Oh my god, this is never gonna end we all just sort of reverted back into our houses and watch TV.
Dan Libenson 6:02
So anyway, the fascinating social experiment, I hope, I hope we won't have to experience it here.
Scott Benner 6:10
Your children will only Excel as high as podcaster. One day, apparently, if they stay out of school too
Dan Libenson 6:15
long. Well, that way we recently were doing six word biographies. And I came up with too much school now a podcaster.
Scott Benner 6:23
That'd be get bored. Right. Anyway, so then I, I did something that I do every once in a while on purpose. I did not go back and look at our correspondence because I thought you're talking. You know, not I don't know if you're doing it for a living or not, but I figured you and I could find something to talk about. So
Dan Libenson 6:40
yeah, I do it for a living probably like you do.
Scott Benner 6:42
Yeah. Right. Which is to say that if one advertiser pulls out, I better go get a job. Are you so first let's start slow, right? Yep. What's your connection to well introduce yourself? And what's your connection to type one?
Dan Libenson 6:56
Yeah, so I'm Dan leaping thin. I, my son Sam was diagnosed about five years ago when he was 11. And I started listening to your podcast, and I remember thinking, I think Arden and Sam are around the same age. And I remember you saying that, you know, it's been nine years or something like that. And I thought that was an eternity. And, you know, I, I was never gonna figure it all out. And you know, so then I was thinking, here I am five years later, and more or less figured it out. So I thought that would be an interesting conversation between us. It certainly would be
Scott Benner 7:31
okay, so what's your son's name? Are we gonna say? Yeah, his name is Sam, Sam, or Dan.
Dan Libenson 7:37
Sam, Sam, Sam and Dan.
Scott Benner 7:39
I knew you were Dan. I just thought I caught my ear a little bit. Okay. So for instance, when I tell people my son's name is Cole, a surprising number of them say, Paul, that's a thing that happens. So okay, so Sam's diagnosed, tell me again, what age
Dan Libenson 7:53
he was 11
Scott Benner 7:54
and five years ago, so 20?
Dan Libenson 7:57
Yeah. 14, or I guess almost at this point almost six years ago, so 20 2014 2014.
Scott Benner 8:05
Okay, so alright, so he's, and how old is he today?
Dan Libenson 8:09
yet? Now? He is 16. Almost 17.
Scott Benner 8:12
Okay, yeah, and Arden's 15. She'll be 16 in the summer. So she's probably a good year, year and a half younger than he is. Alright, cool. So first question, always, huge surprise out of left field, or were you one of the families who's like, Oh, we got Sam, we
Dan Libenson 8:30
know, total total surprise. There's nobody that we know of in our family that has ever been type one. And what's interesting is that our closest friends daughter was diagnosed with type one about a year before so we were familiar with it. But the idea that two different kids in two close families are going to be diagnosed a year from one another was shocking. So it was like a double shock.
Scott Benner 8:57
Are you in the suburbs of Chicago? Are you in the city?
Dan Libenson 9:00
We are in the city in the Southside near the University of Chicago. Okay,
Scott Benner 9:04
yeah. And so now you know, two people, one of them is your son. Other kids, you have another son obviously. have a daughter, daughter. Oh, yeah. two teenagers upstairs not to boy. Yes, that's right. Yep. And so what, what happens first, like, especially in a big city like that, I'm interested in the diagnosis in a place where my imagination tells me the healthcare should be pretty top notch.
Dan Libenson 9:29
Yeah, well, first of all, the interesting little story it was kind of a legendary story in the hospitals slightly not exactly what what actually happened, but the story that was going around was that Sam's little friend diagnosed him because what happened was that he had been going to the bathroom a lot and thirsty and everything and and you know, because we have these friends who had just recently been diagnosed with type one I had in my head that it could be we should test this blood sugar, who knows? And so we went over to their house for dinner and said, Can we borrow your your blood glucose meter just to test this blood? And, and, and we tested his blood and I think it was something like 495. And we were like, the truth is that we we should have just gone right to the hospital. We didn't really know that much at that time. So we were like, I will go in the morning. So we, I think we were the meter and testing them again in the morning, and it was still high. And so we headed for the hospital and we live right near the University of Chicago. So yeah, it's a top notch. Hospital, there's a children's hospital, there's a world famous, you know, group of endocrinologist. Later, I want to discuss that even though you're in a place with worldfamous endocrinologists. It's one thing that they kind of understand the underlying way the disease works, but it's another thing whether they actually know how to help you manage it. But yeah, I mean, I think that now it's kind of faded into memory. But I think, you know, this sort of team of doctors descended on him and tested all kinds of things. And, you know, pretty quickly came back and said, Yes, type one,
Scott Benner 11:06
what happened in his life that made you think to ask for the meter.
Dan Libenson 11:11
Gay was he was going to the bathroom all the time. And subsequently, he said that he was thirsty all the time, I don't think we realized that he was thirsty all the time. But I think we were noticing that he was going to the bathroom all the time. And I think that it was just that we had this friend who had been diagnosed a year before. So it was on our minds. I think if we didn't know about her, it probably would have taken a lot longer until we had done something because it hadn't risen to the level that we have to something happened. And we have to get medical attention. It was just kind of like, well, we go to these folks house every week. And you know, so when we're there next time, let's get out the blood glucose meter and just see
Scott Benner 11:49
Yeah, no kidding. And so he wasn't really complaining about other things. He wasn't experiencing headaches or dizziness, or he wasn't that far into it, I guess.
Dan Libenson 11:57
I guess. I mean, not that I recall. It's, you know, in retrospect, it's like, maybe he was I don't really remember, it certainly hadn't risen to the level of, of a concern. And he wasn't having, you know, any kind of DK symptoms that we knew of, how did he react? He was pretty cool about it. I mean, he, he kind of, I don't know if it was that he's just pretty cool kid or he was at a particular age, but he was just kind of like, Okay, well, and or that he had a really close friend, but he was like, you know, alright, I'll do I'll do this stuff. But the thing that he was horrified by was that I was going to come over to school every day. Until, you know, we figured it all out to you know, test his blood sugar and give him insulin. I mean, this was before we had the pump and, and, you know, he that was horrifying to him that his dad was gonna come to school every day. That was that was the biggest concern.
Scott Benner 12:47
Well, it probably took him years to set up the backstory that you were a foreign correspondent and didn't come home. And, you know, he probably had a whole big thing worked up that you then all of a sudden, like, oh, here's Dan. Sorry. I know, he's, I know, I said he was playing for the bowls 20 years ago, but this is where I get that, like, Arden's good with the, the me being there when I'm there very, very infrequently at school. I mean, I think it's obvious, but you know, not often at all, but I happened to be there yesterday, and we just kind of we were walking down the hall laughing and talking and we went did what we were going to do and head it back again. She was uh, she put an insulin pump site in and it hurt a little going in. And she mentioned it, she goes, that didn't that wasn't good. I was like, okay, but it worked really well for like a day and a half. So we didn't think anything of it. And she's bolusing for lunch. And she said she she bolus then she left her room, she went to her locker and she's standing in our locker getting our stuff together. And our pod just, you know, errors in the middle of the Bolus. So she's like, she sends me a text. My pod just aired. I'm really hungry. I want to eat. And I was like, Okay, so I've said this before me. We live literally across the street from the school. So we don't leave a lot of supplies at the school. I'm home working usually. And so you know, I just I said, I'm right. I'm on my way. So just go to the front office, and I walked in the front office just as she did. And she's got her hand over the pod trying to muffle the beeping. Uh huh. And she's just like, Hey, take my bag, because I'm not taking my hand off of this. It's really loud. It's under my pants, and I can't get it off right now. And, you know, I need to get somewhere and take care of it. So Fine. Like we went and did it. But we're walking through the hallway. She's got her hand, like, awkwardly on her thigh. And you know, we're walking and talking about something completely different other than diabetes, and she's laughing and I'm laughing and I just thought, well, this is incredibly normal to us. You know, like there's no real weirdness about this at all. We went in, did what we did, and she was back on our way again, and and I was home, I was home. 14 minutes after I left my house. It was really a it's really interesting how little it impacted my psychological feelings about the day and I think for her too, so
Dan Libenson 14:59
yeah, it's Like at a certain point, it's like you know, the Navy SEALs or something where you just, you know, your drill and you go right in, you're you're in, you're out, it's fine in those in those early years, or those early days, especially when a kid you know, you're 11 it's just the idea that your parents gonna show up is horrifying. Now, as a junior in high school, it's fine. And also, we've finally learned to leave a box of stuff there.
Scott Benner 15:25
If I lived five minutes farther away, or where I wasn't working from home, we would just pile this stuff up in there. But it was, it was good too, because it was weird timing, like it was before meals, and then we had to do some kind of, you know, some juice box math about how much insulin to put in, because now there wasn't going to be a Pre-Bolus and she's gonna have to eat faster. And like, you know, we kind of handled all that stuff along the way. You said that thing about the, the navy seals and it made me picture in my head, like, you know, 12 Navy SEALs sitting around eating pizza drinking beer with a like a little tire on underneath them that says, eight minutes since they killed somebody like me like they're back home now. And just like back to their lives, and you know, an hour hours before that they were surfacing in the surf, you know, with their night vision on another.
Dan Libenson 16:08
Hey, this is this is like the opposite where you've saved them, buddy. Yeah, exactly. It's my mind. It's like the fire department. Yeah,
Scott Benner 16:15
yeah. We're talking what's going on in the world right now made me think of going to get somebody instead of going to help somebody but right. Anyway, so he's leaves the hospital with pens, pump. How did that go?
Dan Libenson 16:29
Yeah, no, he. So I think I think that because we have these friends that had had been diagnosed a year before. So they kind of had been through the whole series. And by the time Sam was diagnosed, they already had a pump and a dexcom. And so right away, we went in knowing that we should ask for, for pens, not just, you know, vials of insulin and syringes. And so we came out with pens. And then I think very, very quickly, within maybe a month, maybe two, we had him on a pump and a dexcom. And that was only because we had these friends who knew exactly what we should ask for, had gone to the same hospital, the same endocrinology practice and knew exactly which doctor is free in these days, prescribing The, the pump, and you know exactly what we need to do and everything. So we, so we kind of had this whole, you know, again, it was kind of like the navy seals, you know, we had this hole, we knew exactly what to do. And, and that's one of the things that's really stuck with me all along, it's that we were so lucky that we had these friends that also right, if they had been diagnosed, you know, five years ago, they might have forgotten the whole process. And so but because it was so fresh, they could tell us exactly what to do. And we just, we called it a copy paste, we just did exactly what they did on everything. And it made the process so much smoother and so much easier for Sam and as importantly for us that for it's kind of stuck in, in my mind, and it's annoyed me and my wife ever since that, that other people don't have that same experience. And it's been frustrating to try to figure out how to give people that experience.
Scott Benner 18:10
Well, what you just said made me consider like, my first thought was, you know, every institution should have an advocate like a third party who comes in chats with you and explain stuff to you and, and try to point you in a direction that they feel like you're comfortable with. And then I thought, why is this? Why isn't the staff the advocate? And that like? So there's a disconnect there somehow like, but I just think it's, you know, you had that one person? Why couldn't that one person just exist in a often a side office, you know, doing something else and waiting for somebody to be diagnosed with type one? That seems strange?
Dan Libenson 18:41
Yeah, I've been thinking about that. I think it has to do with liability, because it might also have to do with experience, you know, that people don't quite know, the staff doesn't quite know, what people are thinking or what they need, or something it's so hard to believe. I mean, I think I have a lot of experience, they know that, that I think that because we've tried to even get the hospital to start a program where you know, a newly diagnosed person, a family, you know, obviously if they only if they agree to it if they sign whatever, HIPAA waivers or whatever, but that a family could come in and and help them you know, and that we could come in, or our son could come in and just give them some tips and tell them that they're not alone and everything, by the way, that that for me that Juicebox Podcast did in those early years, but that we could do that in person, and they've been very slow or really not at all able to to make that happen. And they haven't really said why. But I suspect that it has to do with liability issues and and and they're not necessarily wrong in that right. Because I think about the advice that I give people when there's a rare opportunity for me to give somebody advice and I know everything on the Juicebox Podcast is not medical advice or otherwise. But you know, and that's that's also true when I talk to people independently, but you know, I have always kinds of specific tips on how to figure out the bazel. And how to figure out the bullets and all of that stuff. And I think that if some random parent came in and gave somebody that advice under the auspices of the hospital, and then something went wrong, there's going to be liability issues. So so I kind of get why they don't do it. But on the other hand, if there seems to be like there should be some, some middle ground or something, some way to get advice.
Scott Benner 20:24
Well, I think that I mean, you hit on a lot of good points, like I do think it's, it's the idea that they don't want to be culpable on a like bad decisions to get made. I think that if all you need to know is that there are a lot of medical institutions around the country and probably, you know, around the world who, when you're, somebody there will tell you, hey, you should listen to this podcast. Yeah. Right. It's their way of saying, I know, you're gonna hear what you need to hear there. And yet, I'm not telling it to you, but you But then again, they if they direct you to it even like, like how does, it's all just sort of posturing and bullshit, if I'm being in my downline, I'm gonna have to beat that, which is actually to do while we're editing. But that's what it is really, right. It's just, it's, it's the idea that everything so confusing, that you can't give anybody targeted advice. But I don't believe that's true. I think if people understand the basic stuff, like the core value stuff, then they can build out from it. I think where the institutions fall short, maybe where the podcast doesn't. And, interestingly enough, the podcast was only able to find its way because I wasn't rushed, right, like I was taking my time kind of building out a narrative is that there are these core things like as much as we like to say, your diabetes may vary, and it's definitely going to be different for you than it is for him. There are some basic concepts that are not different for everybody, they are all exactly the same, and why not start them with those at the very least, you read?
Dan Libenson 21:52
Yeah, and there's some some things that I think also just require a little bit more time to spend with somebody, then the endo office really, I think, is able to write, they just have a lot of patience, and they don't have that amount of time. And, and one thing that as a parent volunteer, you're happy to do is, you know, I'm not I'm not meeting with all the patients, I'm just meeting with some of them. And I could spend a lot more time counseling them and emailing them and going back and forth with them. And like, so for example, there was one family that we know, that was diagnosed relatively recently, and we really tried to do what our friends had done for us. And we really pushed them to get on a pump quickly. And they did. And then, you know, I checked in with them a couple months later, you know, how are things going, and they were expressing a lot of frustration that he was still always over 300, or whatever. And, you know, they had an endo appointment coming up in a couple of weeks. And then they would, you know, ask them what to do, and they would make some adjustments, but, you know, they were being so conservative. And I said, Well, just double the amount of insulin that you're using, it's still not going to, you know, it's going to go maybe to 200, you know, you're not going to go low, don't worry about it, like at this level, if you use twice as much insulin as you're using, my prediction is that you're just going to float around 200 rather than 300. So try it, but nothing, you know, and you're on the Dexcom. So you're gonna see if something's going wrong, you know, like, why not just fool around with it. And they had no capacity to do that, you know, nobody had told them, you could do that they had sort of put the fear of God into them, you know, that a little mistake was could be disastrous. And I'm like, you know, a big mistake could be disastrous, but if you're just adding a little bit more insulin to sort of see what happens, and you're, you're we're talking about 300, and you're having another unit, like nothing bad is gonna happen, and you're gonna start to get some experience and, and people just have no, nobody tells them that and nobody coaches them through that. It's fascinating to watch people. So I talked to a fair amount of people privately. And I'll tell you, going back to what you said,
Scott Benner 23:52
a minute ago, when I speak to you privately, if I ever speak to you privately, the first thing I'm going to say to you is, look, I'm not a doctor, this isn't advice. I know, you've heard the podcast, and I might seem like an entity to you, but I am a person. I'm just a father of a kid with Type One Diabetes, you know, maybe no differently than you are. If I in the course of sharing any of my personal narrative here with you on the phone today, say something that you misunderstand or that leads to like, you know, the injury or death of somebody, it's not my fault. We are we okay with that, which is a weird way to start a phone call with the person you've never met before. You know, but but in order to sit down and really talk to them and share kind of the breadth of what they need to understand, you're going to have to say a lot. And a lot can get confusing sometimes. Which is why I always tell them look, just please don't let's not go into detail here. You know, if your blood sugar's high, you probably need more insulin. You know, this episode of the podcast will probably cover that, you know, try this go there. Listen to this, you know, be a little more aggressive. Trust yourself more like very common ideas. It's so funny when you were just talking You were you were mimicking, like I could think of episodes of the podcast that you were mimicking while you were talking. And I felt incredibly proud. I was, I thought, this is really nice. Like, I'm certain you could have come and maybe you did come to what you just said completely on your own. But there was like certain phrasing you use where I was like, oh, I've said those words. I was like, that's really cool. That it that it found you in Chicago, you know, yeah, like, and that it's, and that you're trying to find other people with it. The best I can tell you is that, I don't know if there's a way to cover people one on one, because there's always a concern that pops into people's minds, that stops them from saying fully what they mean to say, or the staffs not trained, as well as it could be, where they don't live with diabetes or have it. And so they never know the right things to say, I think at this point, you can put me in a situation with a person. And I sort of instinctively Remember to say the things that need to be said. And that's difficult sometimes, because sometimes if you leave out one certain little part, everything else does get messed up. And then you run into what you were talking about, where people's confidence is just very low. And they don't want to make any adjustments even when they are incredibly common sense adjustments. I mean, honestly, your blood sugar's 300. I wish it was lower insulin makes your blood sugar go down. Try more insulin wasn't the first thing they did.
Dan Libenson 26:21
Yeah, but but I think what they're afraid of is that if I if my insulin is, like, I understand that if my blood sugar is too high, I should try more insulin, but the fear is, but what if I have too much, and and i think that the explanation is initially, so just have a little, which is definitely going to be less than any amount that would cause a disaster, especially if you have a dexcom. And you can actually watch it happening. Yeah, so so it's like, yeah, you know, if you're at 300, if my son is at 300, you know, stable, right, I'm gonna give him like, four or five units to get it to get him down to 100. But you new newly diagnosed person, just give two units and see what happens, right? That is not going to go low. And that is only going to start to give you a little bit of experience seeing what insulin does, but people have been made to be afraid of even that, and that that's the part that, that I feel like I'm trying to break through to folks and say, you know, yeah, don't do things that, you know, yes, I should give the whole caveat that you just did about right, I find anything bad happens, and I don't want to be responsible. But I'm trying to give you advice that almost certainly can't even make anything truly bad happen. It's just so so it's just to get you away from the fear of giving a little bit more and seeing what happens or playing with the basal rate a little bit on your pump, you know, and not waiting three months until your next endo appointment.
Scott Benner 27:46
I have to tell you the amount of times that I hear the the like the the analysts that that don't like the Oh my god, I can't believe I didn't think of that sound and the silence and people's conversations is, is fascinating. I spoke to somebody yesterday, who I've been talking to on and off for a really long time. And they contacted me there was like, hey, my, my, you know, we're using way too much bolus insulin, hardly any basal insulin. And when I, you know, I said, Is it this? No, is it that no. And I went to the third thing, she says, Oh, that's probably it. And then you could hear her voice she went, Okay. I should have known that. Like, you don't mean like, like that moment where it's just like, how did they not see it? But I think that when you're in it, it's hard to say? Yeah, I think and that's for most people like like there it for most people. And I really mean this, and I say it every once in a while, but you're living your life, you're doing things and those things are, you know, from emptying the wastepaper basket in the bathroom to dusting something that needs to be dusted grocery shopping, going to work, cutting your lawn, you know, getting the mail, paying your bills, all these crazy amounts of things that you do. And you really do need to step back from diabetes, let everything else go away and look at it. I don't think most people have that kind of time. You know, like, I think that's, that's just the truth about life. Like, there's not a ton of time for stuff. And now all of a sudden, you're putting in this thing that kind of needs you to be, you know, a little retrospective, a little a little, a little forward looking, you know, and you got to make a leap, you got to go against what the doctor might have told you for a second in your head so you can find the answer. I don't know who's got that kind of time. You know?
Dan Libenson 29:30
Yeah. Well, so one of the things that inspired me to reach out to you too, was that this this other family that that we sort of casually knew, I mean, we we didn't really know them very well, but they were basically friends of friends and their son was diagnosed and his and at first, we immediately reached out and said, anything that we can do? Well, we'd be happy to and they were reluctant. They didn't want to impose on our time. The kid was kind of concerned, you know, didn't didn't really you know, what the kid I think was also around 11 Hundred 12 or actually maybe even 14 and Clint was very self conscious about it didn't really want to be overly involved. And so there was a while where we just kind of reached out every once in a while and said, How you doing, but at a certain point, they got in touch with me and said, it's just not going well, you know, we're he's constantly super high and we can't figure it out. And and I said, Well, let me sit down with you and try to figure it out. And then by the way, like, there, I'm sure you know that most of what I know, I've gotten from the Juicebox Podcast and from our friends, that that were a year ahead of us, you know, that very little actual practical understanding of how to manage and how to do pump settings and everything have I actually gotten from the office? So I wonder if what I've got comes directly from the Juicebox Podcast, or I've sort of made it up based on that. But I ended up figuring out what was kind of a three step process that worked. And I was so excited that, you know, I had helped somebody that I kind of wanted to have a conversation with you about what it looks like when you can actually help somebody, and how we might be able to amplify that in the world. So I don't know if I mean, so here's here's I don't know if this is this is definitely should have the caveat of anything you hear in the Juicebox Podcast is not device, medical or otherwise. But I'm curious what you think about this three step process that I came up with, and whether it's something that you've been advocating as well. So okay, so the first step I said was, at night, get find a basal rate that keeps you stable at night, right, because at night, you're not doing anything, so so if you can stay stable at night, at any number at 400 to 300, it doesn't matter, as long as you're staying stable at night, you have a decent place to start in terms of the basal rate, and just set that basal rate for the whole day, you know, obviously, you're gonna have to change it down the road in the daytime. But like, that's a basic beginning point for a basal rate at the point at which you have that stable basal rate, now play around with a correction factor to try to bring it down from that stable number. So let's say it's 300. At night, you know, figure out well, if I get one unit, where does that take me, ideally, it should still be stable, because you've got the basal rate, right. And over time, you can figure out what the correction factor needs to be in order to you know, and and you know, what amount of what number BG is going to go down based on how much insulin you give. So now you've got those two variables. And then the third one, once you have those two figured out, it's just to figure out the mealtime bolus. And again, you do that through experimentation, trial and error, just just keep changing the numbers and see, at what point you kind of get back to stable within two or three hours, whatever your your goal is, you know, and then you pretty much have it. And the problem with doing that through the endo is that they're only doing it every three months, they're doing it, they're they're moving all the variables at the same time, they're trying to make their best guess on how to change things. And that's not how you can really get get these adjustments really quickly, you have to change them every week, or every few days. And if you have no no basis, no methodology for knowing how to even go about the process of figuring that out, then you can't do it. So you know that that was and so I kind of coached this family through that process. And within not very long at all, like two weeks, they were from a situation where they were, you know, at 300, you know, 300 to 400, that would be a normal blood sugar at all times, to a situation where they're now, you know, between 100 and 200, or something like that. And that's within a couple of weeks. And you know, this was months and months and months after having been diagnosed. So the end is we're working on this, you know, for a long time, though, I'm not saying you know, we're better than the windows, but I'm saying that there's a there's a way of coaching somebody through this, that I think it's really beyond the capacity of the windows. And I understand that it's in terms of liability, problematic. But yet hear all these people going around without a real understanding of how to manage diabetes, and they kind of never will get it?
Scott Benner 34:04
Well, I think first of all, just your willingness and desire to be helpful to other people is really, it's lovely to see. And I think that the idea of liability is interesting because you know, what, did you really tell them? You told them you probably need more insulin to bring their blood sugar down. Here's a good place to start. I think here's what here's what worked for me and and then it works for them and then you were uncomfortable saying that you knew better than the endocrinologist but you didn't miss story. So it's it's, it's we all get caught on trying to think of what the word I want but it's it's you know, you didn't want to say and you're not the only one by the way everyone comes on here and says something about their doctor and then goes but I love my doctor. They always start with I love my doctor. It's like you know, it's it's like saying, you know My wife's a lovely woman, I, you know, now, you know, she does sleep with a couple of guys behind my back. But you know, she's so nice to the kid. You know, like, I don't like, we're always like qualifying, I guess like, and I get that like I don't. I mean, I've said on here a number of times, you know, my Enders are terrific. I mean, meanwhile, they're really great people, but I mean, I really only see them for about an hour a year. So I don't know how terrific they are, aren't you? I mean, like they, they're good to me. They, we don't go in there and have problems. I don't know what would happen if I walked in there. And I was like, hey, my blood sugar's 400. I don't know what to do. Maybe I wouldn't think they were terrific. Maybe? Maybe that would be unfair, I don't know.
Dan Libenson 35:38
Well, think about it this way. Like if you have if you have if you need a psychiatrist or something you go every week, or more often than every week to try to get that dealt with. Whereas this is just as threatening as that. And just as, as just as curable is that if not more so? And what would it look like if the health healthcare system allowed you to go every week to a diabetes educator or some or someone until you kind of had a good understanding of it and really got how to do it on your own? Like, why is the system set up that you go every three months? It's crazy. And it's not, it's not a recipe for really learning how to manage a totally manageable disease on your own?
Scott Benner 36:20
Well, I just had a conversation with somebody a few days ago, and I'm pretty sure I can't tell you who it is. So let's just say it's a person that I tangentially do business with through the podcast, and that they're in the position perhaps, of helping people and trying to figure out how to help more people. And we had this exact conversation. So hold on one second. Artemis texted me. She's at one diagonal down. She had a big muffin this morning. And we we killed it. And we killed a little bit of a spike pretty easily. Wait, hold on. But the end of the the end of the attack is a is not going away. Yep. So she's gonna take a little sugar. And I said, Do you have a couple like candies with the inches? I don't know, do I? She's asking me and I'm like, I don't know, look, and she goes, Oh, I do.
Dan Libenson 37:16
And maybe we maybe we should talk about teenager executive functioning later in the conversation.
Scott Benner 37:21
So anyway, I'm talking to this person. And they are asking me my story about you know, how to, you know, how have I seen the podcast grown, what have I seen it through for people because I think I wear a couple of different hats. And it's like, I'm the, the nice guy that comes on and like talks to you, and I am the person who understands how to do this stuff. And I also put out episodes in ways where I think they're, you know, poignant times based on other ones trying to build a narrative, there's a lot, I'm doing probably that I do a good job of coming off, like, I'm not doing like, I'm like, Oh, I'm just silly me making this silly podcast, you know, but, but at the same time, you know, I feel like, I've built a way to help people. Yep, that that didn't exist in the past. Yeah. And so. So this person is trying to say, how do we help more people? And I'm like, Man, that's my as like, the underlying question behind every day of my life, like, you know, if it reaches, you know, if the podcast reaches 5000 people today, I always wonder, like, Why couldn't it reach like 50,000 people and not for the podcast, although that would be nice. I'm talking about like, you know, if it's really working for a large portion of the people who are listening, I wish it could reach more people. Yep. And if it could, how, and then they started talking about that they had a network and that maybe they could be pushing out the podcast to the network. And then if they did that, which episodes would you want to send? And, and we like having that whole conversation. So that thing you're thinking about? It is very cool. You're thinking about it? I'm thinking about it, too? I'm sure other people are as well. Like, how do you give somebody like what in the end becomes like a, you know, like a card hanging on their refrigerator? That's just like, you know, this, this, this, this and this? Have you done these things today? These are the things to do until it becomes commonplace. But do those steps need greater explanation? And I believe they do.
Dan Libenson 39:17
Because when you got an handholding,
Scott Benner 39:19
of course, yeah. And they need to be able to come back to it or walk away from it. That whole thing, let me grab a drink. And so what you said a while ago about, you know, get your overnight bazel. Right. I agree with and I think that's a great place to start. I also think that you said something about doesn't matter if it's three or 400. There I take exception a little bit, like I'm only
Dan Libenson 39:39
talking about for a week or two.
Scott Benner 39:40
I know you are. And I didn't mean it like that. I meant that what if someone gets it stable at 400 and then decides I'm going to go to insulin to carb ratio now and doesn't follow through on the first step you gave him which was get it right, then get it down, then go to insulin to carb ratio because if they do that, then take that second step without The first step being complete it, they'll get thrown into a tailspin, they won't understand anything that's happening in front of them. And so you need somebody to keep checking in like, you'd need a, you know, if that then this flowchart that's foolproof. And the problem is that nothing's foolproof because in the end, the user is the biggest linchpin. And the biggest will it well, and that's, I didn't say that. I don't know what you're saying. But yes, yes, sometimes we are the problem. Like I'm the problem in my house, when I don't get something fixed. Because I look at something that I skipped over the biggest part, if you listen to the pharmaceutical companies, I'll tell you, one of the biggest problems they have with medications are that people don't take them. Mm hmm. You know, psychologic, psychotropic drugs like, you know, stuff that helps you with depression, or I might just use the wrong word there. But your depression drugs, the biggest problem with depression drugs are people who are depressed take them, they stopped feeling depressed. And their first consideration after they don't feel depressed anymore is, oh, I don't need the medicine anymore. Right, skipping over the idea that the medication is really probably the reason they don't feel depressed anymore. And so when you can't trust the user, then how do you know what's happening. And so, for me, the best I've come up with so far, is that the podcast exists in the world. And if you hear it, the way it's delivered, and you follow through on it the way I think it's, and I'm going to use the word manipulating, but I don't mean manipulating, but in the way that it's manipulating you to follow through and the way that is directing you. If that happens to hit you, right, then most of my correspondence tells me, your agency is going to drop a couple of points, it's going to get down into the sixes, you can make it lower if you want, you're going to have these tools at your disposal that work for you. And you'll just kind of effortlessly know how to use them at some point. And then you'll go off on your way. I have not found a better way yet. If there is a better way. I don't know it. But I would just tell you that this podcast didn't exist five years ago. Yeah. And that five years ago, what happened to people was they just decided that a high blood sugar was the best they could do. And they move on. And then there was actually a support system built in the community to tell you that that's okay. Yep. And that's going away now. And I have to tell you, I feel good about that. I don't want people running around shaming others and going you you can't have a 300 blood sugar that's wrong. I want them coming in and going, Hey, I think I know how you could probably get that a little closer to where you want it to be. And I'm seeing that. And and but I'm incredibly proud of that I might be prouder of the shift in how people talk to each other than I am in the shift of their a one season their lesser variability. So
Dan Libenson 42:46
yeah, and I think you should be because I mean, as I think about right, I mean, the only reason that I was able to counsel these folks was because I had been counseled by you. And and I think it's really interesting to think about it right. I'm biased, because I'm also a podcaster. But I think that it's fascinating to think about the power of whether it's a podcast, or a blog, or the internet, or, or all these tools that we now have, which is basically now allowing regular people, I mean, even even the what's it called the software that, you know, creates the the closed loop system that people regular people put together. Oh, yeah. Whoops. So so all these things, right? So so the technology is allowed people to create all these, all these ways of basically sharing things with one another. And on the one hand, that's really great. And I'm thrilled, and you should be proud. And it's so wonderful that we have this capacity, but but basically what it's giving us is the capacity to go around the medical system, the healthcare system, as opposed to somehow the healthcare system being able to actually, you know, care for people properly, because I worry about the people, right, because I'm frustrated, like you about my podcasts, right? I know, for every person who listens, there's 10 people who I know would love it, but haven't heard about it. Like what about all the people that are diagnosed with with type one that don't listen to podcasts, they don't ever hear about it, because in their community, there isn't a first person who you know, I'm in my community, I'm always telling people listen to the Juicebox Podcast, but what about in a place where there isn't somebody like that, you know, and, and it's like, I've heard you talk about also that we're all essentially running a warehouse in our homes for the healthcare, you know, for the diabetes to play industry, you know, for our insurance, you know, that we all have a huge stockpile of stuff, you know, like the whole system is, is broken. And I think that we're all finding these ways of doing our best to try to help one another. But it's frustrating because, you know, the the, to some extent, the folks who are really in a position to to make those tools more widely available, don't or can't do it. And you know, I don't know exactly, again, if it's because of their concerns about liability or just their sense that that's not how we do things. But I wonder how we can break through that?
Scott Benner 45:03
Yeah, there's a ton of like, you know, sayings around change, right? And how it happens. And all I can tell you is what I've seen. The podcast accomplish, right isn't just the podcast, it's, it's the blog. So So this goes back to 2007. And in 2007. Diabetes, blogging was very much in my opinion about telling people look, this is what happens to me. Some of it's not good, you shouldn't feel self conscious about it, we're not alone. Amazing message, really fantastic message. Some people have a lot of success with that message. And that is with six, excuse me, a lot of people there are some people have a lot of success delivering that message. And therefore they get stuck in that being their quote, unquote, business, they're in the business of delivering this card, excuse me, this stuff is hard. And I'm not always great at it, you don't always have to be great at it, there's a very uplifting, beautiful, psychological way of coming at it. And before, tech decks calm or, you know, reliable pumps, and all the things that kind of exists now, that maybe was the best you could hope for. And it was probably what that segment of time needed. As far as a message went, the problem is, is that when some people started making money with delivering that message, that was their brand, so they stayed into it. And then the technology changed. And people like me came in and had a different experience living with diabetes, or loving somebody living with diabetes. And even that, look what I just felt like I had to say, I know I don't have diabetes, everyone listening to the show knows I don't have diabetes, but I still feel compelled to make sure you know, I'm not talking about myself, because there are some old time bloggers who exist, who because of their writings, I know that pisses them off. And then if I go find a 30 year old who's had diabetes for three days and talk to them, they don't care if I talk like that they understand I'm trying to get out of message. And I'm trying to do it quickly. And I think that's also important, I think that the writing I used to see would go on for six and 700 words. And when you really read of it, when you really read it, two thirds of it was just apologizing for itself. You don't I mean, we're saying, you know, they knew some of those people knew they needed more insulin, but they spent more time explaining that they shouldn't be telling you that and making you scared of the idea through that explanation that they never got around to telling you how to do it. I still saw one, there's a person who was absolutely lovely. The other day, I saw them post something about their health. And I'm like, my God, this person's first thought when they reach two people is still let me say something scary about diabetes, and then say it's gonna be okay. Like, you must know more about it than this by now. How is it that this is still your explanation, and then you're catching me on a day where I was already a little irritated, because I see a lot of people setting up false narratives, so that they can write about them. I don't know if they know they're false narratives or if that's their experience. But today, it's 2019. It's almost 2020. And the people who are coming into having diabetes right now, don't think like that anymore. And and it's, it's lovely that they don't have to think that way that they have this different technology. But these are the people who are going to start the flood of how things are spoken about in the future, I do my best to stick with the time I really try to move along, because I think it's best for my daughter. And, and hopefully I can continue to do that here. But if not, then some of these other people have come in God willing, some of them will realize that this is not about getting likes on their Instagram picture and figure out a way to really help people and keep this moving, or else this will die out. And then this ability to help people circumvent this system that changes much too slowly. It could disappear along with it. And I'm not saying I'm the only one doing it. Well you know, and I guess it's wrong of me to say that I think I'm doing it well, I think I am but but I'm sure there are other people doing it well too, or or serving segments of problems that I don't get to. But the other people who are just like look how pretty I am I have diabetes to like my picture. That's great. doesn't help anybody? Mm hmm. Like No, I mean, okay, it'll help them feel more comfortable showing you their pump. That's great. Now what do something else if you've got all this influence? What are you going to do with it? And then they end up disappearing. I'll tell you right now, if you're listening to this right now and you have a lot of influence on a platform like Instagram,
wait 12 months and tell me if you still do because if you're not actively trying to help people, then someone else will just come on whose butt looks better with an insulin pump on it, and then you'll be going, huh? So
Dan Libenson 50:08
Right, right, because I mean, the truth is that, that although I'm expressing frustration at the healthcare industry and in the doctor's office is, the truth is that in our time's right, people who are diagnosed with diabetes, I assume all of them come home and Google, you know, just diagnosed with Type One Diabetes, what should I do, right, and if the first thing that came up was the Juicebox, Podcast, then it would be a different world, you know, then it would be fine. I mean, then, you know, I'd still rather that the doctor told you about it. But if you can find it immediately, and you can sort of figure out or connect with the community very quickly. And, and that helps you then great, but if, like you say, the first things that you come up with are people with, you know, bedazzled Omni pods, that's not gonna serve that, that need
Scott Benner 50:55
the the, the x, the example I use in private company is always one that I don't think I could use here. But there's a person who has a spectacular looking, I don't know how to say it, buttocks, and they don't appear to care to cover it that much. And then everyone's like, their diabetes influence on like, that's a person with a great, but who happens to have diabetes, but I see what you think is going on here. That's not what's happening. And some people see it. As a matter of fact, a lot of people say it. But there are also places where they're scared to ignore it, because they think the likes are influence. I hate the word influence. I'm not an influencer, I would never want to be called an influencer. I'm not trying to be an influencer. I am saying what I'm saying, you can do whatever you want with it. It doesn't matter. You could take it, leave it anywhere in between those ideas, do what you did hear some stuff and make an amalgam of it for yourself. As a matter of fact, that's my expectation, like, I hope. I don't imagine that there are people out there. Beyond in the beginning, writing down, Scott said this, and this and this. And now I'm going to follow these steps. I'm hoping that it's opening their minds to a different way to use their insulin, and then they can make that work in their own lives.
Dan Libenson 52:12
Well, I'm curious what you think about in the connection of the bedazzled Omni pods and all of that, you know, stuff about people displaying them proudly. I mean, there is that is a segue to something that I've been thinking about a lot lately. And, and I mean, I imagine maybe you are and also when I wrote you read, I was saying, like read, I listened to the Juicebox Podcast religiously for the first two years. And then once I figured it out, I listened to it occasionally for just kind of to feel a sense of connection, I listened to it when there's a specific guest from Dexcom, or from Omnipod on, but I listened to it less. But now, it's on my mind again, in a new way, because I'm getting ready for the time when Sam's gonna go off to college. And so there's this new concern. That is not I've just been diagnosed with type one, what do I do, but I've, I'm now getting close to the point where, you know, he's gonna fly away from the nest, and have I set him up to be able to do this on his own. Right. I feel like I've become masterful at managing his diabetes, but he has not become masterful at managing his diabetes. And I think there are two elements of that right one, the one that that the influencers, you know, as positive for is that I do think that Sam and, and our friend who was diagnosed a year before him, they don't have any shame at all about having diabetes, they don't have they're not embarrassed for their Omnipod to show. They're both dancers, and they're these amazing pictures of them in performances with their omnipods obviously clear, you know, and and that's amazing. And then I met this other kid recently, who was recently diagnosed and he is just trying to hide it and he's really nervous about anybody finding out that he has diabetes and and we keep telling him Don't worry, nobody's gonna care it gets these days are so accepting, but but he's intensely focused on that. So if that had been a kid that was just about to go to college, that would be a serious problem, because he would probably not manage it well, because he's trying to hide it. So at least that problem is not Sam's. But Sam's problem is that he is that he's pretty good at managing it on his own. But for example, he, like most teenagers is a very heavy sleeper, and I have this worry that, you know, he's going to be off in college on his own, and he's going to go low at night, and he's not going to not going to hear it, and how do I set him up to be ready to go off to college on his own in light of that, you know, and then in general, you know, does he understand well enough how to manage it when he's awake, so that he'll still have a relatively low A when See, I'm a little worried about that. I'm a little less I think he has a basic sense of it. But But I but I'm still wondering, you know, how can I get him or what what should I be doing over the next year, year and a half to to fully get him to understand how to manage all these elements on his own, where the fact is that he's actually not all that interested in it.
Scott Benner 55:00
Yeah, which I think is normal. I have two two thoughts. My first one was, and I just want to make sure I was clear about, I do think it's really important that somebody is out there showing themselves with their pumps in their cgms. And then because it has that great effect on other people, like, I'm not hiding, you don't need to hide, it's a good feeling, right? I'm saying once you have all these people following you, maybe do something more with it than that, you know, like, yeah, that was, that was my first thought there. My second thought is bigger on the idea of passing, we always talk about passing care, right? Like, because it's funny, you learned a particular skill, you learned how to be the father of a kid with Type One Diabetes, right? That's what you know how to do. You don't know how to have type one diabetes. Right? Right. And, and your son is and my daughter and everyone else who's born, you know, diagnosed prior to leaving home is going to go from being a person who's managed off into being a person who's managing right there, their jobs are going to change. And in this segment of life that says, I don't, you know, I sleep tight, and I don't wake up. And because they don't have, you know, why do you pop up? And, and your son doesn't, why do I wake up and Arden doesn't? Well, I have the parenting thing, right? Like, I've, it's my responsibility not to let everybody die. Like that's that that's how it feels inside, have a baby, see how it feels, it's terrible. You know, like, you're immediately like, Okay, well, I'll just eat whatever and get cancer and die. But as long as the kids are okay, everything will be fine. And I'll just leave them to my brother. And, like, even me, like, it's, you go right into, like this defensive of life mode. Right? They don't have that they don't know to be scared, they didn't have the years, my daughter wasn't, was wasn't 30 The day I thought I lost her in a Macy's, you know, you know what I mean? Like, like, if she was there, She'd wake up and that alarm went off to like, like that kind of feeling. So they don't have that part. So I always maintain, you hear me say that, I think being around it is is a lot of a lesson, and that they're going to transition away. And then they're going to have their own experiences that aren't with us. And then they're going to figure out how to manage them. Now, here's the funny thing we never talked about much like,
much like side effects of diabetes that we don't talk about and side effects of insulin, everybody kind of keeps quiet. And nobody says the stuff they don't want to talk about. The truth is this. Every person isn't a shining example of perfection. Right? And, and as a matter of fact, probably no one is, but we're all different varying degrees of it, you know, like some people end up being more responsible than other people, some people end up, you know, being less, some people work really hard. Some people don't work very hard at all. Some people care about their health, some people don't, some people are somewhere in the middle, you know, like, like, we all end up being different people. But all of us who have kids with type one diabetes are trying to figure out how to turn each and every one of them into a guest that you've heard on the show, who just went out into the world was like, I'm gonna take care of this and just did a perfect job of it. And it's been going along great for 10 years, that's not going to be all of our kids. And so because I think that's impossible to create, I think it's most important to look at your child and think, alright, this is who they are. And this is the kind of help they're going to need getting through. And I take very seriously the idea that I don't believe there's a cutoff date for when your kid just doesn't need your help anymore with diabetes. I saw someone the other day who again, thinks of themselves as an influencer in this space, you know, showing off their kids to 20 blood sugar, and saying, oh, they're taking care of it on their own. They're learning and I thought, you've been posting that for three years now. Like, I don't think they're learning you don't mean or it's just it's the same story for for years and years and years. And that person's decided to take the tactic of kids need to learn, they'll figure it out. And that's what I'm going to promote. And I've heard people promote the, my kid was diagnosed years ago, we didn't have all this technology. And look, they're fine. And then that's the idea they promote. Here's the idea I'm promoting, figure out who your kid is, and support them in a way that is reasonable to what their needs are. And that that might go on beyond when they leave to go to college. That's it. Like, that's it. There are some things I haven't heard from my son twice about, and there are some things he still needs help with. And so I sit back until you need something and then I don't do anything differently now than I did then, you know, I'm like, hey, you're right with us. And, you know, have you considered this? And he goes on, it's a good idea. And that's it because he wants the ones that help. He doesn't want to ask for the help. He doesn't. He doesn't want to feel like he needs to he can't make them feel like they need to help. You can't. You can't do that thing where you martyr yourself. You know, you can always be like, ah, I'll take care of it. Yep, I'll tell you, not like It's all the dramas got to go away, you just got to just got to do the things you need to do. You don't I mean, it's like tending to field, it, I mean, nothing sexy about getting a tomato to grow. But if you just do all the things you're supposed to do pops right out of the ground.
Dan Libenson 1:00:14
Right. I mean, I think that there are probably two dimensions of it. Right? The one is the the not dying part. And then the other is the excelling part. Right. And, and they're not dying, you know, it's like, so he went off to a camp for six weeks for debate this year. And actually, it wasn't too far from our house. So if there was an emergency, so that we could get there. But I did a lot of research and found this thing that is really meant for deaf people who have babies, you know, and the idea is that when the baby cries, the bed shakes, because it's like a big vibrating desk that goes under the mattress or under the pillow. Yeah. So So I got him that thing. And, you know, he really didn't want to use it. But he reluctantly, you know, we told them that he had to or he couldn't go to camp and and and and i think that he used I think that he used it. The truth is that the year before we had had to call the the dorm people at least twice during the summer because he was going low and and we were calling him and he wouldn't answer the phone. And so you know, we had to send them out to wake him up and do something. Whereas this year, we didn't have to do that at all. So I'm assuming that meant that the bed shaker worked. And so I'm kind of planning to send him off to college with his bed shaker. What's interesting is that when he came back from Camp, and we said, Hey, that bed shaker worked. So well. You know, maybe you should just use it all year. He was like, no way. And we were like, Well, why should I have to wake up when the alarm goes off? And he said, You're my parent. That's your job, you know, in a really sweet way. But you know, he meant it. And I kind of was like, Yeah, all right, I'm willing to do that. But, you know, there's this question of of Okay, the the not dying part is there? Am I gonna feel good sending him off to college somewhere far away? Knowing that at least he's gonna wake up in the middle of the night if he's going low? And, you know, is it has his executive functioning got good enough that he always makes sure that he leaves the house at least with, you know, a candy bag or something that so that again, if there's a emergency, he's able to handle it? Or, you know, and then yeah, we're Dan, will he find a different way? Yeah, you know, will he find some way?
Scott Benner 1:02:18
Yeah, his way. And I think that's, that's the hope, right? You just don't want him to, you don't want him to be shaken on the ground before he figures it out. And then there are probably some adults listening right now who were thinking, Man, you need something to go wrong, so that you can figure it out. You're like me, and some people will and some people won't. There are some people listening right now. We're just ultra, like, you know, type a super risky, you know, resilient, always like, I'm going to do the right thing. And they're just going to do the right thing, right out the door. And they're going to be some people have to bump into a bad moment to figure it out. and everywhere in between, like, I again, I think it's a bit of a i a lot of people ask me, and in my opinion, there's no answer right there the there is no answer to the idea of like, what do I need to do to get my kid ready, if you really want to know what you need to do. In the next year, every pump company in the world is going to have a closed loop system, figure out which one you like the best, I'm getting the on the pot horizon. And hopefully, and hopefully, that'll keep my daughter from having a crazy low while she's away until she can figure out diabetes. But you know what, some kid is going to get on that system. And it's going to make them lazy. And they're just going to think, oh, I don't have to pay attention to it. And some kids gonna see it as a great, so we're all incredibly different. If we were all the same, none of us would be able to get a job because we'd all be absolutely fantastic. You know, then there'd be every job interview would be a million people lined up who were all perfect, and that's just not who we are. So, you know, he can't shoot for someone else's idea of perfect. You have to figure out who you are and then make your stuff work within who you are. And I think that's got to be your focus moving forward. Now you'll find a way to do it the bed shaking things hilarious and brilliant, by the way, and it's cool that it got you through that moment. And, and if if your son ends up having a problem where he doesn't wake up forever, it might be something he might happily put under his mattress one day. And and maybe he won't maybe it'll just make a joke. You know, the first time he's with a girl and like my dad used to try to shake this bed with the thing, but look how we just shook it. Who knows and that's weird to think about Dan because he's your son, but that's gonna happen to when he leaves. By the way there'll be an after dark series coming up about sex and marijuana smoking. But But, but I think that it's just it's just a fool's a bit of a fool's errand to try to predict the future. And, and I and I, and I don't know which person My daughter is going to end up being I have absolutely no idea. The best I can do is bump and nudge her in the right direction, which is oddly how I think of parenting. Like I just if they get a little too far off. I'm like, oh, Over there, back here, I think my job is I've said this before, I think my job as a parent is to be able to repeat something a million times without sounding irritated by having to say it again, because they need to hear it a lot before it sinks into them. And so, you know, you start off with this great message, and then you get irritated, because you have to say at a time, but that was your job. And if you don't want to do that should not a kid because that's what's gonna end up happening, you know, they're gonna need to know things. And, you know, like you said, their executive functions not great until they get to a certain age. And then what if on top of that your kid has diabetes and their blood sugar's crazy, then their ability to think about things is even lesser. And you know, no one talks about that. No one talks about like, my blood sugar's 200, I'm probably a little altered. Right? You know, but she's hard to get along with, what a short temper on that one, like that kind of thing.
Meanwhile, I get notes from people all the time, one of the things they're most grateful for when their kids blood sugars become lower and stable, is the return of a personality that they remember before diabetes. Hmm. So I don't know, I think it's too much of I think diabetes is a completely like I said, in the beginning, it's a small thing, right, there's a couple of core truths about it. And then from there, there are a million leaves coming off of a million branches. And they all over time should be understood, the more of it, you understand, I think the better chance you have of being going in the direction that you want to go. So a lot of weird metaphors in there. But But I don't think it's something you can learn all at once, I think you can get the basics down at once, I think there are some things people can tell you that will be helpful, then it's up to you to how much you care about it. It's up to finding out how much time you have in your life to see how you can implement it, you know, are you going to end up being you know, I don't know if you saw this week, but I put up an episode with an adult type one who drinks a lot and came out and came on and talked about it. Because it just occurred to me one day, some people drink more than other people, those people have type one, diabetes two. So when I get off here with you, I'll be responding to an email from a guy in his mid 20s, who said, I smoke a lot of pot and I have type one. And I was like, great, come on, and tell me about it. Because one of your kids is going to go off and smoke a lot of pot enough type one. So they should have some basic idea of what to do about it. Like, I don't buy into the idea that you, you lie to people about what exists in the world, because then they won't get to it, I think they need to know what you know, I think that there'll be some people who hear the drinking episode and hear a funny story about a woman who drinks a lot. And I think there'll be some people who hear it and go, I'm really glad to understand this, because I drink the way this person does. And I'm gonna have to figure that out.
Dan Libenson 1:07:49
Yeah, so it's also that, you know, you think about diabetes as being something unique. But if your kid doesn't have diabetes, as you raise them, right, they don't drink throughout their childhood throughout their teenage years, right, you keep that you keep them in terms of alcohol, you keep them in a good place, and then you know, when they go off to college, some of them are going to start drinking a lot and, and some of those are going to drink forever, but most of them will not, you know, will will moderate it after a while. And so you kind of there's this period of time, where you know, you've been working so hard to manage them in a very particular way. And then they're gonna go off for a while and you know it and do their own thing. Like I think about that metaphor that you use a lot, you know, about the the idea of the the sugar in your blood, you know, being like sandpaper, right, and doing bad things in there. And so you work so hard to get a low a one c throughout their childhood, because that's your job as a parent, but then they're gonna go off for a few years, and they're a one c might be higher, and how do you feel about that right to you like, well, that's, that's just part of growing up, and there's going to be this period of time when that might happen. And I've done them a real goodness as a parent by making sure that that was the first time in their life when that happened, as opposed to it was the 11th out of, you know, the 11th year in a row where that happened. And, and they're gonna have to go through that period where, you know, and hopefully it's gonna be short, and so won't have that kind of damage. And then then then they'll get to be more of an adult, and they'll have that executive functioning again, and they'll, they'll be able to ask for that advice or ask you what you know, you know, and and that's true of any element of of a child who's going off to college. So, you know, it's, it's, it's stressful, but it's also the same kind of stress in some ways that anybody feels 100% art is
Scott Benner 1:09:33
going to get a slightly tailored, different talk than my son did. But it's, it's going to be the same idea when when my son left for school the night before he left, I pulled him into a room and I said, I don't think I need to tell you any of this, but I'm going to anyway. And then I sat down I'm starting to curse and I'll be put out later I said there are a few things in life that are unfolding. And he said what I said once you can't so I just Just went over those things and some of them were not good. I said, you know, you can't get a person pregnant because you can't, that doesn't go backwards. You can't kill a person. And I don't think you're gonna go out there and murder somebody, but you can't hit someone with your car, you can't like, there's a thing if that happens to you, even if it's by mistake, it'll stick with you for the rest of your life. Even if you're not injured. The idea of you hurting another person will will alter your life in a way you can't imagine right now. You don't I went through a couple of things. And one of them for me for Arden is going to be her health. Like if you send your health down a path that you can't get back off of. It's going to alter everything. And what's the point? Again, that's what I said to my son. I'm like, what's the point? Man? I was like everything you've done for these first 18 years? What's the point now of going and doing one silly thing, the messes that up? Sure, it's not going to happen to most people, most people aren't going to hit someone with their car, most people aren't going to buy all these things that we talked about, right? I'm like, but if you are the person that that happens to, that's it, you can't go backwards. That's who you are now. And that's where you move forward from and maybe, in some cases, you won't be able to move forward from that. Maybe that'll be where your life ends without one stupid mistake. I said, so there's just these few things, if you avoid them, you just have such a better chance. You don't I mean, like, so why not just about these few things. And to me, one of them for Arden is going to have to be, you know, you you have to avoid the desire to ignore your diabetes. And that's going to be one of the things I'm going to say to Ariel, whether she does it or not, is another thing, but I'm releasing myself of guilt. By the way, Dan, I gave him that talk. If he goes out and get some girl pregnant, I'm gonna go like, Oh, I told you not to do that. And so and there are ways around it my friend. But you know, it just to me, there's only so I was gonna say there's only so much you can control. But what the truth is, is there's none of it that you control. Yeah, like the best you can do is, is just put them in the mindset that you think they're going to need to make that thing work. And then give them the ability to know that you're still here, and you're happy to help whenever they need it. That's that's basically what I did. So that it'll the kid will work out or it won't work out Arden will or she won't she'll take her diabetes seriously, or she won't. If she doesn't, I'll support her and try to help her do it. And, you know, hopefully it won't turn into a situation where I'm the equivalent of a parent of a drug user, like where I'm just constantly saving their life over and over again. And that's my, my toiling demise. Like, I hope that's not my situation, but it's somebody. Right, you know, I just got reached out to the other day and said, Can you talk about, you know, hardcore drug use and how it affects people have type one diabetes, I was like, I will look for somebody to look into that and see if I can't find somebody to talk to about it. That's a real, you know, just think whatever the whatever the percentage of the population who are alcoholics or addicted to hard drugs, you know, whatever that percentage of the population is, that's the same percentage of the diabetes population has that issue. Right? And, you know, no one's no one's talking to them about their blood sugar's at all probably, you know, I don't know. And, and those people are someone's children. Right, so
Dan Libenson 1:13:25
I can see some promising spin off series from the Juicebox Podcast.
Scott Benner 1:13:29
As long as it's not you, Dan, don't steal my ideas. Okay. You should
Dan Libenson 1:13:33
be all these people are gonna work for you.
Scott Benner 1:13:34
We're way over an hour. I have a I have a question. You have a podcast? And so when did so when did you start your podcast? What? What got you to start it?
Dan Libenson 1:13:44
I started it in 2016.
And the truth is that we I wanted to write a book. Our podcast is about thinking differently, thinking more creatively about the future of Judaism, and ultimately about religion and wisdom traditions in general. And Netflix didn't scoop and then try to get that from me. Not yet. But But there were there was that podcast company, right that Netflix did a show about. So you know, it could always happen. And anyway, I wanted to write a book about it, but I felt like we need to do more research and and and ended up saying let's do the research in the form of the podcast, I never really thought that it was going to get a lot of listeners. So that was a that was an exciting surprise. So then it became a thing in and of itself, but it started off as a research project.
Scott Benner 1:14:32
That's amazing. Good for any, you're doing incredibly well with it. That's I don't want to ask you how many listeners you have. Because that's private, but I love that your that your that happened. And I think it talks about I mean, it kind of shines a light on what we've been saying the whole time, right? Like you started off by saying I want to write a book, but instead I'll do this because it needs more air right I need to step back farther. I need to see more research need to understand more ideas, and then all the thing all of a sudden the thing you found Through into its own thing probably makes the idea of a book feel a little unnecessary at times.
Dan Libenson 1:15:04
Yeah. And I think it's actually very similar to you know, I was griping about the doctors in the healthcare industry. But but essentially right, in some ways, the pod, your podcast and other endeavors are kind of going around that. And ultimately, giving people a path to get the information that they need, outside of those institutions. And functionally, that's what I'm doing, in my case, in the case of Judaism, but there are all kinds of ways in which the internet is making new pathways available to people. And, you know, I think including me, it's uh, you know, the, you still have a desire to gripe at the old system and why why don't they figure it out? And why don't they change, but the truth is, is that I think that those of us who are just kind of going forward in a different way, are sort of solving that problem in a new way on our own. You know, the frustrating part for me, and I think the frustrating part for you is just like that, I know, it's not that I right, like you said earlier, it's not for my ego. And it's not for at higher advertising rates. But it's that I know that there are people out there that need this information. And because I'm a one person, two person operation, you know, without a lot of money, I don't have a marketing budget. And I don't have a way to make sure that the word is out, if I if I had a way to make if I knew, for example, that every single person who was diagnosed with diabetes came out with a subscription to the Juicebox Podcast, I don't think I would really care what was going on in the endo office. But because I know that there are all these people that are going out, and it never hear about it for 10 years, more I worry about you know, then then, then I worry that there are people who could manage their diabetes so much better. And in my case, the people could have so much of a richer, richer internal life or richer spiritual life, whatever you want to call it, and and just never heard about the new way of getting that. And instead, they go to the old way, like a synagogue, and in my case, or an endo office in your case, and they get and I know what information they're getting there. And it's not the information that they really need are one. And that's, that's frustrating. So, you know, part of it is that I think, and I'm sure that what we're doing in on the internet is, is eventually going to grow up, like we were talking about a kid growing up and going to college, like, our work is going to grow up and go to college. And they're going to be all kinds of new ways that people connect with this stuff. And we just happen to be living through this early stage of it, where it's all new, and it's the Wild West. And on the one hand, that's so exciting and awesome. And the other hand, it's, it's frustrating, because you know that that's where the really good stuff is happening. But But not everybody knows about it. And that's just like you, like you're saying about the kid going to college like it is what it is. That's just, that's just what we have to deal with. Right now. I have
Scott Benner 1:17:46
to say that I understand your frustration, and you know, I've said it already here. But it's it's palpable. You know, like the idea that you can't you feel like you have this this stuff, whatever you want to call it, it's an idea. And it could you've seen it be helpful, and you'd like it to help more people. And like you said, I don't have a, I, this is just me, like this podcast is me. And so I have to grow it and believe in it, and then adjust it where it's not right, and then let it grow. And if it's the right tool, it'll make it like I hate to say it like that. But yeah, I definitely feel like that, like if this podcast is what I think it is, and I tend to do it properly, then it will continue to grow. And it will continue to help people and it will find more people. And if it doesn't, then I will take that as an indication that either it wasn't the right vehicle, or I wasn't the right driver, or maybe a combination of those ideas. And that somebody else hopefully will come along and pick up the mantle and move it forward from here. I certainly am standing here, you know, on the backs of a lot of really brilliant people, some of whom you may have sound like I trashed earlier, but I wasn't they just they were people who got caught in a space and they stayed there. I saw what they did. And I thought I don't want to just do that. I've told that story here before. I'm like, I don't want my blog that just be this thing that makes other people feel like oh, yeah, diabetes sucks. That guy agrees with me. I don't want like, it's got to help people. How can I do that? And then I step through those ideas. The podcast exists because I saw blogging going away. I had 2 million clicks a year. And then all of a sudden, one year I had a million and a half and I was like, Oh, I don't think I'm doing anything different. What's going on? So I started asking friends I had who were doing it, they were all seeing it slipping. And I thought all right. I'm not gonna stand here on the Titanic till it's just me and, you know, Leo on the headboard. Like I'm getting out now, you know, so I didn't bail on my blog. I use my blog, I think in a really good way still, but I'm like, how do I build on this and make it something else. And then I follow the only skill I had and which is being able to endlessly talk So I just saw, I'm like, Well, let me try this. And it caught on. I've seen other people launch podcasts that don't catch on. And they're about the same idea. There are other people who launch diabetes podcast, and they don't get four people listen to them. And then that's the end of it. And so I don't take that as an indication that I'm better than they are. It's just that whatever this is, and whatever, I am all mixed together. People seem to be enjoying. And so that's it. I'll try to make it bigger. And it'll get as big as I can. And I don't mean big as in successful I mean, big is in reach. Yeah. And I'll tell you, I've never said this on this podcast. And but there's something about having you on here that makes me say this, it's almost I think, inappropriate, I never know. But I always relate how I feel about the podcast to the last scene of Schindler's List. I'm not making this up. Because you're here, there's a moment in, in the movie, which I don't know if it's based on real fact or not. But I think he recognizes Schindler does that he, he has a piece of jewelry leftover he didn't realize he had. And you can see over his face the wash of like, I wonder what I could have done with the money I could have gotten for this. And the sadness on his face about about things left, you know, to the devices of the world that he felt he could have intervened with, and these are not an apples to apples feeling. Of course, I don't mean that in any way. But when I get a note back from somebody, and it talks about the change in their life, I feel good about the note. And then I wonder what I did wrong? And why then that one note wasn't five minutes. You know, like, yeah, it just hits me that way.
Dan Libenson 1:21:47
Yeah. Well, and the one thing that I would sort of add to that, and is that I know that not everybody feels this way. And not everybody has to feel this way. And if your kid is diagnosed with diabetes, and all you want to focus on is your own kid, I think that's totally legitimate. But I think that a lot of us are desperate to help other people. And like, I've actually thought about, you know, not really, but I've thought about, you know, maybe, maybe I should become a clinical diabetes educator, like I, I'm really good at this, you know, like, but I love my career, you know, I don't want to change what I'm doing only because I happen to know that I would be really good at this. But the question is, is there more that I can do as someone who doesn't have a diabetes podcast? Is there something more that I could do to help a few people? And that's, to me, that would be the next step beyond the podcast, you know, for you, I mean, not that you have to do it, or that somebody inspired could say, Okay, how do I now make a way for all the people who feel grateful to this podcast for the help that it's given them and kind of pay it forward? in light of the fact that I know that the healthcare organizations or doctors are not really making that something that's easy to do? So is there some kind of way could we be like community organizing on our own in each city, so that, you know, somehow, you know, I don't know, we have someone stationed outside the hospital that watches when somebody leaves? And oh, so that they can follow them? Either? That's pretty creepy. But you know, how do you get that information? But like, how do you at least kind of make it clear that some, some volunteer whose advice is not medical or otherwise, it's going to show up at your house and sit with you for as long as you need it, hold your hands to help you understand that it's actually totally manageable, and coach you through the process of managing it. So that so that, you know, which is which again, I think it's something that's totally doable in a matter of weeks. And instead, people spend years, you know, not really able to manage, they're not getting good results. And, and, you know, that's the part where I feel like, you know, how, how is there more that I can do and all the other listeners of the podcast? How is there more that that we can do to amplify what you're doing, beyond just the audience for a podcast, even it can grow to be as big as it can be, there's still always going to be more people that, you know, don't listen to podcasts? I think so I
Scott Benner 1:24:09
think that question really boils down to like scalability, right? Like, how do you scale the podcast to reach more people? And and so that it works when you get to them? And that's a tough question to answer. You know, like I at the moment, you know, what I'm doing in the next six months to address what you said initially, is that I am
Unknown Speaker 1:24:30
I'm taking
Scott Benner 1:24:32
offers to speak at jdrf events in cities that people don't get excited to go to very often. So and I don't mean any, you know, there's some bigger cities and you'll see people in the in the space like, Oh, I'm speaking at this one. It's a you know, a huge event 600 people at it, and instead I've made myself available to the rest of them and I and I am it makes you sad when you get the initial phone call and they're like, Look, you probably wouldn't be interested in coming here. That's how they Start, I'm like, I don't know, why are there people there who have diabetes, I'm like, yeah, I'm like, I'm plenty interested, you know, and so I'm going to go do some of them. And then I'm going to do some larger ones to try to build up the idea that you know, so other people can see me my visibility so that I can go find other ones. And I'm going to do as many as I can't, I think at this point, I've put more on my calendar than I should have, I think I'm going to go speak like eight or nine times the next six months. But that's more than I should be doing. For my own. You know, it's not a money making endeavor. It's not like a business, it's, it's a time, it's a time suck, to be perfectly honest, you know, and, but you go out and you reach 2345 600 people, most of them are newly diagnosed, and then you have this real opportunity to put them on the path that exists today, instead of the path from 2008 that someone's probably going to tell them about yet. So I figure, I figure if I can go start those little bonfires in enough corners of the country, then they'll spread. And then one day, I'll just get on here, and rant and rave for two and a half hours about everything I hate. And that'll be the last episode of the podcast, and that'll be it. And so, and I will have done my thing I said to somebody recently, I hope one person shows up at my funeral and says, that guy helped me be healthier. Like, that's really what I'm, that's kind of how I feel about it. And so it gets lost for some people. Because I, I get through this podcast with a lot of sarcasm and humor, and some of its darker. And I think that maybe some people wouldn't believe that about me. But I really just want people to be healthier. You know, I really I want parents not to cry in the shower. I want I want kids to be able to go off to college without having to think too much about it. You know, I want 35 year old people to not wonder when their eyes are gonna start needing tending to like, that's just the kind of stuff I want. And I figure if I grow it here, and maybe I'll understand that enough to help my own daughter, but that's pretty much it. You know, it's not all that altruistic. It didn't start that way. At least. You know, this whole thing started with me trying to figure out how to help my daughter. Yep. And so that's it, man. I don't know. Yeah, I, I very much appreciate it talking to you. And we've gone way over an hour. But that's fine. If you wouldn't mind, could I, after we say goodbye on the podcast here. Could I talk to you for a second? Probably? Yeah, that'd be great. Yeah. Did I leave anything out that you want. And by the way, if you want to help in your own community, I'll come out and speak in Chicago. You know, like, get some people together. And we'll put we'll put people in motion and then maybe we'll create more of you. And that'll be more people that reach more people. And you can feel good about that. You know?
Dan Libenson 1:27:47
Alright, well, thanks for that. I'll look into what I can make happen. So I'm sorry. Did we not go over? I'm sure we didn't know. I think that was that was it? I think nothing jumped out at me. I think we talked about the main thing. Yeah. Dan, what's the name of your podcast? It's called Judaism unbound.
Scott Benner 1:28:02
I can get all the places where podcasts are podcast.
Dan Libenson 1:28:05
Yep. And if you just search for Judaism, it's usually the first one that pops up. All right.
Scott Benner 1:28:09
Well, thank you so much for doing this.
Dan Libenson 1:28:11
Thank you for having me. Thank you for everything that you're doing.
Scott Benner 1:28:15
Huge thanks to the Contour Next One blood glucose meter and touched by type one for sponsoring this episode of the Juicebox Podcast. Go to Contour Next one.com forward slash juicebox. were touched by type one.org. To visit the sponsors. There's also links in your show notes and available at Juicebox podcast.com. And huge thanks to Dan for coming on and going I thought toe to toe with me because I was super talky during this episode. And when I gave him a chance to talk, he came right back. It was a very well thought out great at delivering his thoughts. I really appreciated him being on Dan's podcast Judaism unbound is available everywhere the podcasts are available, and I have never heard it. So I can't tell you anything about it. But I can tell you it's incredibly popular. That sounds interesting to you, Judaism unbound. Thank you very much for listening to the Juicebox Podcast supporting the show with listener reviews at Apple podcasts by sharing with other people. I very much appreciate it. We'll be back later this week, whose way It's me. I'll be back later this week with more episodes. Thanks so much for listening.
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