Scott Benner 6/22/20 Scott Benner 6/22/20

#348 Navigating Bureaucracies with Type 1

Melissa is a teacher and a T1 mom

Melissa is a teacher and a T1 mom whose daughter was heading to school for the first time with type 1 diabetes. She was looking for someone to talk through what to expect and was kind enough to allow that conversation to be recorded.

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

Scott Benner 0:00
Hello, everybody, and welcome to Episode 348 of the Juicebox Podcast. Today's show is sponsored by touched by type one. And the Contour Next One blood glucose meter. I'd like you to go to Contour Next one.com Check it out, really look into what this little meter does. I love it. Arden's been using it forever. It's fantastic Contour Next one.com, you may be eligible for a free meter, you'll find out there. And of course touched by type one, the greatest organization in the world, my opinion, touched by type one.org go see what they're doing for people living with Type One Diabetes. Okay, this episode's gonna take a tiny bit of explaining. It was recorded in August of 2019, with the intention of putting it right out for the beginning of the school year. And then that didn't work out right away. I wanted it out because it's really good. But I couldn't make the timing work. Then I thought, oh, I'll just sit on it. Like, I guess my idea was to put it out like midway through the school year. And then people could have some time to, you know, ruminate over the ideas before they went back to school. And then the coronavirus happened. And I sat on it again, because I thought Are people going back to school, I don't even know. And now I wish I didn't do any of that. Because as I listened back to edit this, it's so much more about advocating for yourself than it is about school. In the middle of the episode, we go off of school for a minute and talk about looping. And when we do that, you're going to hear my initial thoughts about looping, which are of course, now almost a year old. I think you should find the other looping episodes. If you find that part interesting. Nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please always consult a physician before making any changes to your health care plan. or becoming bold with insulin. I'm excited because I don't really remember why we're doing this. And I love those.

Melissa 2:02
Why originally wrote in about how the school I'm a teacher, myself, and how the schools vary in the level of care that across, you know, even the county where I live and across the nation, I'm sure across the state. So I just think it's really interesting how there's like a streamline way of how they handle diabetes in school.

Scott Benner 2:25
Cool. Listen, you've just done the entire setup for the show. Thank you.

Unknown Speaker 2:29
Yay, you're welcome.

Melissa 2:32
My name is Melissa cat. I have a seven year old type one who was diagnosed when she was four. We luckily caught it before it became too extreme, I guess you could say we actually would never were admitted to the hospital. We were just given a syringe and a vial of insulin and taught you know, a binder of stuff five hours and sent on our way. So we learned a lot. I learned a lot on my own. And here we are two and a half years later doing you know pretty well, I would say it's amazing. Yeah.

Scott Benner 3:13
Let me orient my brain. So tell me, tell me one more time your daughter was seven.

Melissa 3:18
Right? She is 774. Yeah, at the time

Scott Benner 3:22
for seven, three years. And her name is

Unknown Speaker 3:25
Chloe. Chloe. All right.

Scott Benner 3:28
Interesting that they, too, they never admitted you at all?

Unknown Speaker 3:33
No.

Scott Benner 3:34
Tell me about the process of the teaching? Did they literally send you home right away? Or did they sit you in a room for a while.

Melissa 3:40
They sat in a room for a while. So we went to the pediatrician for what I thought was a UTI. My mom suggested that I test for diabetes, because she kind of did a little internet research and some of her symptoms led to that. Thank god she mentioned that because I don't think I would have ever asked the pediatrician I course better or had her drink an entire juice box before going in so that she would go to the bathroom and God in there, tested her blood sugar. And she was forced 68 the pediatrician at the time kind of just looked at me got up and said I need to call Children's Hospital. We're close to Los Angeles. So he said I need to call Children's Hospital. I'll be right back. He laughed. I kind of sat there for a few minutes not really understanding what was going on. I ended up getting up and leaving. I took both my girls and we left. We went about her day he called me and said where are you? And I said I'm going to the mall. And he said well, you need to go get blood work done. So we stopped at a hospital got some blood work done. I just didn't understand the severity of what was going on at that point and no one was really saying anything. So um, he was trying to get us in to children's hospital because he had no ketones. And they weren't super worried about her. They It was a Monday. They couldn't see us until Thursday morning of that week. So Thursday morning at 5am. We drove in, sat in a small room for about five hours with a diabetes educator who herself was also type one. And, and she literally went through a binder of information. And like, I think the first thing she did, though, was really hand me a syringe in a vial of insulin and said, Here you go, you got to do this. And I was like, What?

Scott Benner 5:32
So now I have to ask the question that I'm imagining everyone listening is thinking, you're in the the office. The blood sugar comes back, the doctor doesn't communicate well says I have to call Children's Hospital leaves the room, and you literally pick up and walk out at some point before he comes back.

Melissa 5:53
Yeah, I just I didn't I, I, I he didn't say I needed to hang out. I I honestly did not understand what was going on. You know what I mean? I mean, he said he had a called Children's Hospital. But I didn't. I don't know. I guess it just didn't register to me. Like I said, the severity of it. I mean, she seemed, I don't know, I just really didn't get it. And the ironic part is, I had a friend from high school who I knew her daughter was type one. And I know she had gone through a lot just with finding out of that. And I, I just I don't know, I guess it just didn't resonate. I think maybe I was in denial. I don't know, I really don't know. I don't

Scott Benner 6:29
know what I was thinking. I can't I can't decide. Obviously, I wasn't there. But I can't decide if you just like disconnected his statement from you. Like you're like, oh, that he's got phone calls to make. We're done. I gotta go. Or Yeah. Or if you were just like, Okay, this is terrible. And let's get out of here. Like, I

Melissa 6:47
know, I don't, I feel like I don't think if I don't feel like in my heart, I felt like it was really a terrible thing. I just thought, Oh, she has type one diabetes, and now she's, you know, going to need eat differently, or I just didn't. I didn't understand it. Um, and yeah, I don't know. I think

if I was scared, I would have stayed. Yeah.

Scott Benner 7:09
No, I'm not trying to paint you as like, you're like, yeah, better things to do than this? No, I'm not saying that. It's just amazing that, that he wasn't able to,

Melissa 7:20
I don't know to impart upon you what was happening Exactly. Like, do you think it took him by surprise? Yes, he was actually my pediatrician too. And to be honest, when the number came up on the meter at the office, I could tell by his face that he was you know, disappointed or Yeah, concerned. And I had my oldest daughter Avery in there who is definitely was was really worried and kind of freaking out herself about even just the finger stick, you know, and, and so I just think it was an overwhelming thing. And he had said to me, it's presenting itself as type one. Diabetes, he didn't actually say, this is type one diabetes. Um, so I just kind of felt like there would have been a I don't know, I don't know what I

Scott Benner 8:06
guess I've recorded about 300 of these. And you have finally said something completely different than anyone else has ever said. I usually people stories are fairly keto, simple. Yeah,

Melissa 8:16
I get it. I get it. And you know what, and that's what I kind of feel like, I am, yeah, I had that. I left I got blood work. You know, the Children's Hospital wouldn't, you know, couldn't see us. I have a neighbor, ironically, who also has a type one daughter who was a little bit older. I rarely see her because she's a nurse. She works at night and sleeps during the day. And so I happened to run into her The next morning, and I said, Hey, can I talk to you? And she said, yeah. And I said, well, the doctor said that, you know, Chloe is presenting with type one. And she said, What do you mean? And she's like, Can I come in and have, you know, a cup of coffee could be talk and from that, that's when I think it all kind of hit me. You know, she just because she cried immediately and said, I'm so sorry, you're going through this and you're like, why? Yeah, that's good. Totally. And she just said, you know, things can go from bad to worse really quickly. And so I mean, the the pediatrician and said, you know, to feed her low carb stuff to not give her anything that you know, so I was giving her low carb meals. I mean, he had given me some pieces of advice. He was really frustrated with children's. He didn't understand why they weren't weren't able to see us, but I don't think they felt like she was as high of a risk. I don't know. I don't really know what they're,

Scott Benner 9:35
and I realized that's a busy part of the country, but in my mind, hey, we're diagnosing someone with Type One Diabetes, they go right to some sort of informative care situation Right, right. Or even presenting with any you know, in the moment health risks, but not to say that a for something blood sugar is not a health risk, obviously, but right. That's fascinating. What she honeymooning or was it Yes, she was so she'd bounce. Yeah. In the beginning,

Unknown Speaker 10:01
yeah, you know, we got there they tested her at Children's Hospital they tested her she was at and they looked at me and they said, Did you give her insulin? And I was like, No I don't even have insulin. No I didn't and then so then that at that moment, I thought, Is this a dream? Like did they diagnose something that isn't real you know and so unfortunately they said no, she does have it you know and and then from that moment on she they gave us pretty I mean, I feel like they should have told me I needed to bring sugar you know with me to the hospital because I live about I mean, about an hour from children's hospital but you know, you know, LA traffic Yeah, could be three hours so i i really all I was thinking was they're gonna put me in a car for three hours and not let me have any sort of sugar to like, you know, help her because she crashed the first insulin dose she crashed pretty hard she didn't really need in fact we didn't even end up needing long acting for you know, a few months so well that's a tough time I mean, the honeymoon time is is crazy. There's a lot here to unpack and and I know this is what we're really good at. I know so I just think it's I get your your cuz you have hindsight frustration right now you know more about diabetes. So you right, look back on that moment and think like, how is this possible? This is what you said to me or send right home like that's, you know, count your carbs put in your insulin. Right? No, possibly it might not be necessary all the time. And I don't even know how you would, how you would communicate that if that was the case. Like that's why honeymooning is such a crazy, you know, like time, you know, just to need insulin so badly one day, and four hours later at the next meal not needed is is is maddening. It's very much as it is. And I remember reading somewhere that someone said that it's almost better when they're not honeymooning. So at least you know what they need, you know, like, you kind of can guess what they need. You're not, you know, though,

Scott Benner 12:06
yeah, there's a lot more consistency that comes when the pancreas just gives up. Yep, yeah. And stops and stops making random insulin. Okay, so, so, so she's not a school aged kid yet at that point? Not yet. Right? Nope. And so how long between diagnosis and kindergarten?

Melissa 12:23
Luckily, the summer she was diagnosed in February, she started kindergarten in August of that same year, so I have this summer to really get my act together.

Scott Benner 12:33
Did you and how much of your act Did you get together in that time? Like what was your What was your like? Like, I guess I should ask real quickly. Are you using MDI still

Melissa 12:42
know you know, we're looping. We've been looping since May. But I requested a CGM. With the after the first meeting at Children's Hospital, we had a dex calm within a month of being diagnosed. Gotcha. Luckily, so that was amazing. I actually, thank God for that. And then we were MDI for about six months after that, and then we got the Animus pump before she started Kindle. That was my goal was to get her on a pump, at least for kindergarten. And then of course, months later, we find out animus is no longer so we are now using the Omni pod.

Scott Benner 13:19
Gotcha. It's funny, I had the same exact feeling like Arden was diagnosed when she was two. But in the run up to kindergarten, I thought I can't send her to school with needles. Well, I don't know why I thought that at the time. It's just how it struck me. I was like, I'm not letting some like random nurse like poke my kid with a needle. Totally. Yeah. And it's funny. Now I look back. I know those people because they live in my town. And they, you know, it's, I probably would have been fine. I'm sure it would have been fine. Yeah. Yeah. But in the moment, I just thought, well, this is not okay. Like, I just, I don't want her to have to let someone else give her a shot. And, and so we we went to the Omni pod. You know, when Arden was like for getting like, ready for when she was five and going off to school. But um, so she gets to kindergarten, your daughter gets to kindergarten, right? And is the is the integration as seamless as you were hoping.

Melissa 14:08
Um, you know what, I think that was a little I was a little naive in that part too. I myself actually teach kindergarten. And, and I we have a really great school. I didn't initially have a 504 I just kind of went in thinking like, oh, everyone's going to take really good care of her and they've got a plan that this she's not the first type one and get an amazing kindergarten teacher who followed her on jacks. I did request that the health tech follow her also i think that you know, I am in the middle of teaching, I can't stop and like say, hey, she's dropping fast, you need to do something. So, um, it was seamless until about January, everything seemed to be working just fine. And then they just I might our health texts, we don't have nurses at our site. We actually have a One nurse for about 4500 students in the district where my kids go to school, and she oversees the health tax. And the health check at our site is amazing, is very great at communicating and very great listening to what I want to do and what I think we should do with her. Um, but you know, the nurse always wants to make a call. And it's just it.

Scott Benner 15:30
For those of you who are wondering why I have recently switched from Skype to zoom to record my podcasts, this is one of those reasons. Anyway, good time for the Contour Next one.com conversation. Contour. Next One blood glucose meter, huh, Wait, are you here. First of all, the web address contour co NTOUR. Any XT, one, O and e Contour Next one.com. When you get there, what you're going to see is a lighthouse. It's got some lights coming out of it, some are green, some are red, or some are yellow. That's a little bit of a sly send up for one of the systems within the meter to help you know where your blood sugar's falling visually, you know, for in the middle of the night where red might make more sense to you, or green may make you feel comfortable. If you can't really wrap your head around the numbers in the moment. Anyway, that's a tiny part of this meter. biggest part of this meter. It's crazy accurate. That's why I love it the most. If you took away everything else that it was, and it was this accurate, I'd still be down like you could make this accuracy in a shoe. We pretend there was a shoe that was a meter but it was as accurate as the Contour. Next One, I'd carry the shoe around, just use the meter. Luckily, you don't have to do that, of course, because the Contour Next One is small, handheld, beautiful, bright light, nice, easy to read display. And test trips that actually you can go back twice, you know, if you have to to get blood, if you missed the first time don't get enough, you don't waste the test trip. Second Chance, saves a lot of money on test trips. Anyway, I love this thing, it's actually got an app with it that works for the we got that iPhone or the Android. If you guys are interested in seeing your numbers from your blood glucose meter like that, it can be really helpful. But all this is explained at Contour Next one.com you can also see the meter there, it's ardens meters been using it for quite some time now. Anyway, give them a check. Contour Next one.com. While you're on the internet, getting yourself a state of the art blood glucose meter, please check out touched by type one.org beautiful organization, I'm gonna do it right now touched by it'd be nice if I could type touched by type one.org beautiful mission to elevate awareness of Type One Diabetes to raise funds to find a cure and to inspire those with diabetes to thrive, that ought to be enough for you to check out more. They have amazing programs, awareness, annual conferences, they do this beautiful bowling program, they have a dance program called dancing for diabetes, which is just wonderful, they send these boxes out to people who have been newly diagnosed, check that out. It's really a terrific word. Really, really, really, I can't say really enough because I mean, every really I say so I should just say it for the rest of the podcast. But I won't touch by type one.org there are links in your show notes. And at Juicebox podcast.com. We're touched by type one. And of course the Contour Next One blood glucose meter. Okay. But also, I want to tell you here, this isn't an ad though. So let me find what I want to tell you. And then before the podcast gets going again, and then I'll kill the music, and make talky with you and tell you ready. So up until this point, we're just learning about Melissa and her daughter story. But soon we're going to talk about really detailed stuff about advocating for yourself in school, then we trend away for a little while and talk about loop. And then we come back and kind of double down on the school stuff. I actually like the second part of the school conversation, because it really feels like it catches a rhythm. And I mean, the whole thing is great. Don't get me wrong. What I'm trying to say is that in the middle, when we stopped to talk about loop, you're going to be hearing my reactions from a year ago. And they're not the same now. So if you're interested in more, go to Juicebox podcast.com. Scroll down to where it says algorithm pumping and you can use an arrow to move around there to see all the episodes that we've done about looping at this point. We me, I guess in the people I've had on that sounds strange but let's get back to it right now. We get Melissa back on Skype and keep going. Did that dog sit on your phone or something? What happened?

Melissa 19:44
So sorry, no, it was me getting another call and I tried to like cancel it but it didn't work. So it couldn't be my But anyways, so sorry.

Scott Benner 19:55
No, no, don't be sorry. So you were saying that the nurse was good. Was she overreacting like, like wanting to do too much in the moment? Or

Melissa 20:04
I just think that, you know, my approach to type one was kind of a lot of what you, you know, like, I didn't want to give her 15 cards, if she's, you know, just gradually going down, you know, I, and I didn't want to always give her as much insulin as the pump was recommending if I knew he was dropping, you know, and there were just certain things, she would question my decision, because I think she was very black and white, where it says you need to do 1.1 unit, I want to do 1.1 units, but I was like, well, but she needs a little bit more, or she needs a little bit less. Yeah.

Scott Benner 20:36
And so she's following the orders. The again, it's right. It's interesting, isn't it? Like you said, 15 carbs a second ago, like, Doctor says, Hey, if you get low 15 carbs, 15 minutes, right, you know, check again, which was really spectacularly good advice. A long time ago for people to know this technology. Because you know, what, if I'm what if I am on my way to passing out I guess the measure was 15 carbs might be enough to save your life if your blood sugar is falling really far. And check again to really give it time to like work. But you can see so much more now with your decks calm, and you can make more fine decisions with your pump. And it's a different world. But the the orders still get written like that from the doctors. And then I can see the nurse at school thinking, look, this becomes a legal issue. At some point, like the doctor wrote this, I'm supposed to do what the doctor said, right? And then you're stepping in and being like, no, use more, use less don't do right. And that makes them nervous. So how did you get her? Or did you not get that? I'm assuming her but I shouldn't? Yeah, I know,

Melissa 21:36
it is a her and you know what, I think over time, he trusted me as a parent to make good, you know, like, I wasn't being radical. I wasn't like, Oh, she's 59 just let her ride it out, you know, I light incense

Scott Benner 21:49
and have a drink olive oil.

Melissa 21:51
Totally. I mean, I think I really honestly think she knew I had my act together. I mean, I, I really, because of my experience. In the beginning, I felt like I and I as an educator, too. I felt like I needed to read and hear everything, you know. And so I really did read and hear everything I went to diabetes conference, I, you know, we went to City of Hope and hurt. I mean, I just really engrossed myself with a lot of education on on it and how to treat it. And so I think I proved myself to her that I wasn't, you know, being. So she's kind of backed off to the point where she did didn't actually involve ourselves at all anymore, which is good and not good. You know? Um, well,

Scott Benner 22:31
before you move on, I want to say that what you just said is, I think a staple of working with the school, right? It's that you have to, you said prove yourself, I think that's like, I think you have to have a few experiences over and over again, where the nurse finally goes, Hey, you know what everything this person has said, is working out the way they said it was going to, because they don't know you. And they do know every other kid in the school, right? And a lot of those other kids have diabetes, too. And some of their parents don't know what they're talking about. And, and so they're not going to take just someone's word that they know better. And how else are you going to do that? You can't tell them. I mean, you can't sit down. And you know what I mean? Like, if I was a great artist, I couldn't sit down and explain to you I was a great artist, I'd have to paint something and let you see it. And so I think that's what this is, is that you just have to live together for a little while, build some trust, and then grow on it. But But what do you think happens in that moment? Where is it just this? Like, is it a parental defense? Is it like, what happens the first time you say to the nurse, look, it's point one, not point two, and she disagrees with you? Do you feel like oh my god, that woman is gonna kill my kid? Or like, what's that like, visceral feeling?

Melissa 23:43
You know, what I initially let her make I in the beginning, I was like, Okay, we'll do what you want to do. And then because I kind of knew the outcome wasn't going to be what she expected it to be, you know what I mean? And like I said, so the way that it works is that there's a nurse that oversees the health tech, and the health tech is someone I truly 100% trust and I think if she was making the call, I would have been more apt because I feel like she knows my kid really well, you know, she's the one in charge of her all school year. And but the nurses just kind of sporadically in and out of the school. And she has, you know, like I said 4500 different students to you know, oversee. And I so I did initially let her kind of make that call. I didn't like it and then other either her blood sugar was high or blood sugar was low, and I kind of you know, let her you know, like I said, I think over time she kind of said, Okay, I think she sir Come to the fact that like maybe I knew a little bit more about my kid health wise medically, then maybe she did textbook wise,

Scott Benner 24:48
it's interesting that you both were in the same situation. Initially, the nurse didn't know or trust you and you didn't trust her so

Melissa 24:54
well. And I think I mean, and and to be honest, I think that's what the And this is why it's like baffling to me because I feel like everyone's situation, I mean everyone's needs and what they want the school to be, and what you know, the kids are able to perform, and what they're willing to provide. And each family is really different. And I don't feel like I feel like school district that my daughter is at, they don't quite the lady who's overseas, the health nurses are, is not medically trained at all, she has no medical background, yet she makes some medical decisions that I feel are not smart and not, you know, safe. And so this hierarchy of like, Who's in charge of who is really weird, and I feel like the nurses that have everyone should be the one making any medical calls, not, you know, some district employee with an admin credential. And just because, you know, I don't know, it's just really weird and replate wasn't as full when they made the position. Like, right,

Unknown Speaker 25:57
I mean, yeah, right, right.

Melissa 26:00
Let me Oh, man, I don't know if that's, that's the, you know, issue that we're having now is that we have someone in charge who really doesn't know, diabetes, and then isn't really willing to work with us, like a couple of us, our parents in our district are trying to get them to write a diabetes Handbook, and kind of update the training that they're providing the health checks, as well as there's like, there's three individuals at each site that are supposed to be trained with diabetes care. And one of them is the health tech, which is they're great. They deal with it day to day. The second one is like a secretary, who, in my opinion, shouldn't be part of their job description, you know, when they're answering phone calls and helping parents and they should I mean, band aid? Yeah, I mean, cool. They scraped their knee, great, but not measuring carbs, and insulin and that stuff. And then the third one is admin, the principal up the site, which to me is like, is, you know, I don't know. So it's so crazy, I feel. And the health check at our school is amazing. She was there every day, all day, I would feel very comfortable. But when she's not there, she's at lunch, it's kind of like, Oh, God, please let this hour be great. Or let us have a good day. Or I always have someone locally as a backup, because it's scary. Not you know, to have someone in charge your kid that doesn't understand it,

Scott Benner 27:24
you know, so you're really explaining a situation that led me to, you know, texting with diabetes, like how to talk to Arden and eliminate other people from the circle. Right? And because what you're describing, if, from your perspective is simple, right? And it was my perspective to like my kids, there's, you know, she's, you know, using insulin, this is all could be very dangerous. You really all should really understand. But then I stopped them looked at it from their perspective. And I was like, Okay, this is a, this is a bureaucracy this this place, you don't mean like, and, yeah, totally. Yeah, they can't get they can't get the things right, sometimes that they need to get right around teaching kids. And now I'm asking them to make these medical plans. And I thought, What's more reasonable, that I'm going to fix the political and and, you know, social and hierarchy structure of a school? Or if I just look at this whole thing and think, how can I handle this and take them out of it? Because I do, because everything you're saying, to me? Seems seems very doable. It seems altruistic, I hope you get it accomplished. But by the time you get it accomplished, your kids gonna be in 11th grade. Right? I

Unknown Speaker 28:39
agree. So

Scott Benner 28:40
So I agree. I just one day, I was like, Okay, let me pretend these people aren't here. How would I do this? If Arden was just in that building? And I was like, okay, the best way to do this is to just remove other people from the scenario and hope and just put them in charge of, you know, holy crap, everything's wrong. Emergency Plan, handle it? Yes. Let's just make sure the school can knows how to keep her alive. And I'll do the management stuff remotely.

Melissa 29:08
Yeah. And you know, what, actually, so when she started, she's going into second grade. Now, the kindergarten year was really kind of a, like, oh, we'll see what we can do. Last year, I realized by the end of the year, she, I really should be just texting her, instead of texting the health tech, who then calls the classroom teacher who then sends her down to the nurse, and then all of this fat, you know, a lot of extra. And so this year, hopefully, we'll have the five before before school starts and or, you know, relatively within the first week, and that's one of the things that I want to request. But I also know that my daughter who's very responsible, and from the get goes, wanted to do a lot on her own. And she at times gets overwhelmed by how much you know, she gets feels the pressure of like, oh, if I give myself too much, you know, I could make myself go super low, or if I don't give enough, and I'll have to stop and do this again. So I just type walk, you know, our tightrope walk of what kind of responsibility? How much responsibility Do you give them? And how much you say like, Oh, well, they're, you know, I want them to still enjoy pool and be a kid.

Scott Benner 30:20
Yeah, but her then her, excuse me her only responsibility, then in my mind, the way you're setting that up is you have to tell her Look, your only responsibility in this is to read reread and be sure. I'll take care. I'll take care of everything. It's like Mommy will make all the decisions. And you only thing you need to do is make sure you're doing exactly what's in the text message. Take 20 seconds, stop what you're doing read this. Make sure you understand it double check it before you push the button. That's it.

Unknown Speaker 30:44
Yeah, no, you're right. Yeah. And

Scott Benner 30:46
then it'll, it'll grow from there at her pace.

Melissa 30:48
Yeah, absolutely. And you know what, and now the looping thing is helped a little bit more. Because we, you know, I've always was like, if I saw an arrow going up, I wanted to correct her immediately. I wanted to make sure I didn't get too crazy before, you know, it's just, you know, so hard. Yeah. And so now I feel like our, it's been better, it hasn't been seamless. But it's been better in controlling her numbers. It's not so crazy. And you know, after breakfast, or at recess, or whatever it may be. So I'm hoping that will help kind of cut back the amount of intervention she's gonna have to provide for herself during the day. That's a weird thing for me to talk about. Because you and I are talking in

Scott Benner 31:36
August of 2019. Right, right. It's the first week of August, no one's gonna hear this for like five or six months. Okay, and but next week, six days from now, I'm recording my follow up to our looping situation. And it's going to go up right away. So in real time, it'll be up next week. But so I don't want to say something to you. Now that will confuse people six months later, but just so if everybody keeps that in mind while they're listening, a closed loop system right now that the most is talking about is is not, it's not FDA approved. It's not even from a company, Melissa downloaded this code off of the Internet, and, and is using it to help her Dexcom her daughter's Dexcom talk to her on the pod it's making decisions. Now, this is the same code that tide pool is at this point, trying to move through the FDA to get it approved, so that you will be able to use the loop as an FDA approved algorithm on your cell phone, right?

Unknown Speaker 32:34
Yeah,

Scott Benner 32:36
we've been using it for a while now. And it? It's really interesting, because, because imagine you were married to the person who was the love of your life. And I don't know, 18 hours a day was absolutely spectacular. And everything was really happy. But every once in a while, randomly punched you in the face for no reason. Okay, like so. And so you're wandering through the living room, you're like, Hey, we're in love. This is great. Oh, my gosh, why did that happen? I've been assaulted. And then all of a sudden, it's over again. And you're so it's, it's looping is great. Here's what I've learned. You're my test. You're gonna be my test. You're going to get me right. Next week, Melissa. Okay.

Unknown Speaker 33:21
Yeah, I'm Mormon.

Scott Benner 33:21
Yeah. All right. When there's no food involved, I love the algorithm. It's amazing overnight. When Arden sleeps in, you know, when there's no active food nurse system, it's damn near perfect. If and here's the caveat, you get the 9000 settings correct that it requires to make those decisions. Getting those settings correct is mind numbing, and nearly impossible. It feels like once you get once you get them correct. It's amazing. Now here's the here's the problem. For all of you listening to the podcast to anybody who is, you know, being bold with instant thinking about stopping the arrows, like all the stuff that we talked about on the podcast, you are way better at handling a meal than the lupus. Because Because you're being flexible, right? You're seeing something, you're seeing an arrow jump up that you didn't expect, and your brain goes, Oh, we don't have enough insulin and you put in more insulin. The algorithm trusts the settings. So if you tell it This is 45 carbs, and you put the insulin in and the blood sugar goes up, the algorithm doesn't think anything of it. It goes Huh, doesn't matter. I put in the right amount of insulin for these carbs. This is going to be okay. Except that's not true. And it's not it's not a learning device. It doesn't like the next day go Oh, I remember this from yesterday. This time. I'll give it more. It watches it go up. It follows along with what the settings tell. It is right. And it's wrong. So what the loop can't do is it can't be flexible and it can't. It can't think about variables like like 45 carbs of this might not be equal to 45 carbs of that, that, yeah, that kind of stuff. It can't think that way. And it's so good outside of the food, that you start to trust it when you shouldn't trust it. Is that right? Am I right?

Melissa 35:15
No, I get it. Yeah.

Scott Benner 35:17
Okay. So amazing technology for anyone not listening to this podcast and having success. All those other people will try an algorithm whether it's going to be on the pod, you know, horizon, or if it's tide pool loop that you'll one day be able to use probably with any pump. And you know, I know for sure without a pod, because they have a an agreement with tide pools so hard to talk about his also specious at the moment. Yes, right. But all I'm telling you right now, closed loop pumping, is the future, we are all going to be doing it. It's amazing. If you listen to this podcast, it's going to be frustrating, and not at times, as good as you are. For all the other people that listen to this podcast, amazing leap. They'll have amazing leaps in their agencies and their successes and everything like that, because to Melissa's point, when it misses, and it will miss on the meal. And it goes up to 175 and sits there for three hours, it will eventually bring you back down, it might take six hours to go from 175 back to 80. But it will eventually get you back. Whereas, you know right now some people just see that 175 who don't think about it the way we all think about it. They're just like, okay, whatever, and let it ride there forever. Yeah. So it's gonna be an amazing leap for people who don't listen to this podcast. For people who do listen to the podcast, you're going to sleep way better, and be 300 times more frustrated at mealtime there. That's my experience with Lou.

Melissa 36:48
Yay. Yeah, I mean, I had a lot of the same similar. I mean, I'm still trying to figure out a little tricks to like when those mealtimes go wrong, you know, how do I trick it to, you know, make sure that they're giving enough infinite and I sometimes wonder if it's because I have a child, you know, because I know there's a lot of bloopers who are adults who have like, really amazing straight lines. And I'm thinking like, well, maybe it's, you know, maybe it's more than just food. Maybe it's like, reactions. I don't know, I overall it. I was really frustrated like you in the beginning. But I think overall, I feel like there's a lot of less thinking about stuff in between meals. And then there was before so it makes any sense.

Scott Benner 37:32
It does make sense to me that you'd be in that situation. And I'm gonna tell you for me, for as far along as I am with this. I don't think about diabetes at all. When when I'm doing it my way. Yeah, we've loop. I'm thinking about it more. But I've also slept through the night, more days in a row than I have since diabetes existed in our lives.

Melissa 37:54
Is that part of it is amazing, actually. So

Scott Benner 37:57
I'm trading one for the other. Yeah. And the reason that it took me so long, six months ago for you to hear my my follow up to my loop episode with Katie, is because I don't I didn't know how to talk to you about it. And you'll know it. I still am learning. I don't know. Everything I talked about in the podcast was like the culmination of years of effort, right? And then thinking and fixing things and going oh, this is where I do this and like so when I say something, you know, something to you guys at this point that sounds like like, like a T shirt slogan. Like he's like stop heroes. You know what I mean? Like, yeah, that was like six years of me figuring out how to do that and how to explain it to you guys in like two sentences. And so put put me into a completely new situation. I'm, I'm back in the learning process. I'm doing exactly what you're doing, trying to figure out how to fool it, how to like make it do what I want. Because here's the biggest problem with loop, right? It when it thinks you've put in enough insulin, but you haven't. And you go Oh, it needs more. When you put it in, it takes away all the bazel Hmm. So if your basal rate is three units an hour and you think you need three more units, you put the three units in as a bolus, it takes the bazel away and you're back to zero again. It's like, you're like your mother. And just Yeah, I know. I'm gonna curse so much when I talk about the loop on my own that episode. So it

Melissa 39:18
is it's I will tell you I felt like I'm a fairly intelligent person. And in the beginning with those settings there it was mind numbing how much I was thinking. I'm like, Is it the bazel? Is it the Max? You know, math being all God

Scott Benner 39:33
is is up here's my one fun thing. Why do an end? Why Why would an engineer look at a setting and say, Okay, what we'll do is when you make the number lower, it'll be stronger and when you make the number higher, it'll be weaker.

Unknown Speaker 39:45
You're absolutely right. Like

Scott Benner 39:46
I get how your math engineer mind thinks about it. But did you not think about everybody else when you made? No? Absolutely, like volume up is more down is yes.

Melissa 39:57
100% I am Yeah. I don't even know. And I feel like, um, I, you know, like I'm on the loop. There's like a new Facebook group for looping with kids. And I feel like a lot of parents want to know everyone's settings. Like, what's your settings? And? And yeah, and I feel like it's almost detrimental to like, look at someone go, Oh, that's a seven year old girl and I have a seven year old girl. Let me you know, type in their settings. It's like, No.

Scott Benner 40:25
I'll tell you right now the best piece of advice I got was from somebody who's on the podcast, who by now people would have heard, because I recorded her before you. But she told me to stop thinking of the the range as a range. She's like, Don't think of it as like, Oh, I want her to stay between 80 and 100. Think of 80 as when the bazel shuts off and 100 as when it turns on. And I was like, ooh, and that like light bulb? Me but so I will tell you that. There were three times I was gonna quit. First three, yeah, first three days. I was like, This is stupid. The second three days, Arden said to me, why are we doing this when we are so much better at it than this is? And I was like, Arden, I know you don't listen to the podcast, but right on kid. Yeah, great. We are way better at this than this loop thing is then the human.

Melissa 41:17
You know, we we make judgment calls on the fly like, oh, wow, we need to do this not? This is what you put in, you know?

Scott Benner 41:25
Yes. And I think that that's going to be an issue. You know, hopefully it won't be but that the expectations of people are way skewed on what this stuff is. Yeah, like they definitely think it's, you know, a miracle worker robot making like, you know, heavenly decisions. And and it just is not that. It's amazing. Because why? Because it shuts your bezel off when you're getting lower. Like and when you're getting and when you try to get high it Jacks your bazel up and it Jacks it up like crazy to like, yeah, that part is amazing how it works that I love around food. It's, it's I know, it's

Melissa 42:03
hard. It is hard. It I agree. I agree with everything you're saying I am. Yeah, it is definitely in it's so different than what you know other like what like you were describing and what you do, it's it is different. It's hard sometimes to have something work so well and then switch it completely and then have to learn something totally different. So

Unknown Speaker 42:25
yeah,

Scott Benner 42:26
I stuck with it because of the podcast. Because and because I believe that this is the way things will be done in the future for most people.

Unknown Speaker 42:35
And so will you stick with it?

Unknown Speaker 42:36
Yeah, yes. Okay.

Scott Benner 42:38
I got asleep. I'm almost 50 Let's get it

Unknown Speaker 42:40
right. Yeah, I get it. You know, I mean, like, I'm gonna Yeah, I can't,

Scott Benner 42:44
I can't, I can't like, I'm not gonna live forever sleeping the way I was sleeping before. And it by the way, it wasn't bad. Like, I don't want people to think like I was up all night. I was like, you know, it's just like, you know, one o'clock, you take a look maybe four o'clock. alarm, like that kind of stuff. But broken sleep is rot. It's worse. It's, I'd rather sleep for straight hours than six hours and get up twice. Yes, just I agree. And it's not get up to go to the bathroom getting up because that as long as you don't stub your toe, you don't. You don't really wake up. Yeah, I mean, we aren't getting up and making a decision about insulin or having that adrenaline rush of low blood sugar. That's difficult. You know what I mean? Yeah. So anyway, it's it's a it's, it's something I'm going to stay with, because I feel a responsibility to the people listening to this podcast, because I do believe that it's going to be an amazing improvement for most people living with diabetes and using insulin. Yeah. And because and because the sleeping part. And you know, for Arden as well, when she leaves for college, like this is just And plus, we don't know what it's going to be years from now. I mean, like, if it's this now if it's this good right now, coming from some well meaning people on the internet, yeah, right, then it's gonna, it's going to get amazingly

Melissa 44:03
better. Right. I and, and honestly, from the get go from the moment that we were diagnosed, I have felt that I have entered this type one world in a way that was less, you know, alarming, I think, than others only because I had a dexcom I had, you know, a pump. My experience wasn't you know, what people did 20 years ago, and I don't I look at it and go, Oh, my gosh, I feel so lucky that I did have the deck come to me with everything and still is everything. You know, without that I feel I feel like I could get rid of the pump and I could get rid of the looping and all of that. But if I didn't know her blood sugar, I would be anxious all the time. You know,

Scott Benner 44:42
no, I understand. I it's just, you know, the people who will tell you well before and all this stuff we all live to I'm like, Yeah, I get you, but this is better. So yeah, no, it's um, it just is it's it's having the information is better than not having the information. Okay, so, so we'll get away Actually, let's do this. All right here, I'm gonna say something and then pause, and then keep reading. Okay? If you guys would like to hear the conversation I had with Katy de Simone, go back to Episode 227. And if you want to hear the one I did as a follow up with Jenny Smith, you can go to Episode 252. Okay, Melissa, I'll fill that in later, when I actually know what episodes they are. I want to go back to the school thing a little bit, because you are in, you are in the exact same place I and most other parents find themselves in in this moment, you are scared, anxious, seeing people who are probably not really putting in nearly the effort to this diabetes thing that you need, looking for an answer, finding a lot of stone walls, what is it you're going to do?

Melissa 45:45
Um, you know, I, I don't know, I'm gonna do the best I can. I'm gonna rely heavily on the people I do trust. And, you know, kind of, I did a lot of pushback last year on on certain things. Like, for example, last summer, I asked, you know, someone change a pump site, if, you know, something happens to her, she rips it off, or Kenya was bent. And and I got, yes, the nurse will do it. And then later in the year, I found out from another type one. They said, No, it's not, we cannot do it. It's too involved. Um, and then I was, but I was never informed of that. So it's just a lot of like, misinformation and kind of what's told to one family isn't necessarily communicated all families. So I did a lot of like questions. I mean, I'm gonna push back on certain things like for that, for example, you know, and they basically when I did ask, Well, why are you saying that? You can do it, but then telling me telling another family No. And they had an old Medtronic pump. And I guess it was too involved for the nurse. They said it was too complicated for the nurse to change the Medtronic pump. But by Omnipod pump was pretty easy, and that they probably could do it that they needed me to contact a trainer to train the nurses. Well, when I contacted Omnipod, they said, We don't train school nurses, you know, which I can understand why. So I offered I could train. I mean, I've been doing this now for a year and a half. I'm pretty sure I know what I'm doing. I could teach them but I never got a response. So it's been a true battle. And I think at this point, like you mentioned, I think I am going to rely solely, not solely but mostly on my daughter and, and you know, take care of herself. He's super responsible, and I trust her more. In fact, I started teaching her how to change the pump. And and when I spoke to the school board in regards to this, about it, they you know, it's like How can a medical, you know, a nurse not feel comfortable yet my six year old is capable of doing it. It doesn't make any sense. Like it's too complicated for a nurse but yet my six year old could do it. I don't get it.

Scott Benner 48:01
does make sense. Let me just be a little more cynical. So here's the Okay, you live in Los Angeles, the weather the weather's beautiful. Nobody's day really gets going till around 1130 you're living a different kind of like wonderful life people. People who have never been in LA don't know. I swear to you, nothing happens to like 1112 o'clock. Yeah, right. Right. It's gorgeous. There, the weather's fine. There's no humidity, people are beautiful cars are beautiful. Everything's beautiful. Life is good. Let me give you a little more Philly New York about this, okay. They don't want to be responsible. They don't want liability. And as much as they try to shine up a school to make it look like a community thing. It's a political machine. Right. Okay. And so, my, I got to learn it early on my daughter's my son and daughters principle of their, their, were their kindergarten and first, second third, I think fourth fifth grade was, was, as I looked back on it, a politician. She smiled and waved and everything was okay. And I came to realize that if I would have walked into that building, and the whole building was on fire, and I would have found her and said, Oh, my God, the buildings on fire, she would have given me the same smile, the same wave and the same reassurance that everything's going to be okay. And we've got your kids best interest at heart calculate,

Unknown Speaker 49:19
right?

Scott Benner 49:20
So their job, because think about it. You just said like 4500 kids in that school or something like that, right? Oh my god. 4500 kids. Most of us believe our children are little princes and princesses and we want them treated very specifically. Well, if they start doing what you want, then they're going to have to start doing what everybody everyone and for some reason, they can't separate medical from Billy likes an Eastern sun on his face around two in the afternoon, right? Right. Like the difference between a real ask and a an a BS ask right? Hello. So they just don't do anything. Their job is to do nothing. And get you out of the building, and then get somebody else in there. And just as minimal as you can teach the kids this curriculum as best they can. And they're moving you along. They don't. They're not thinking about the things you're thinking about. And even when you describe them, they don't understand them. They don't. And if they understood them, they still might not care. Because they, they fall back on that we've had other kids with diabetes here. I actually had a woman say to me before, do you know how many kids with diabetes have been through the school? They're all still alive? And I was like, I was like,

Unknown Speaker 50:27
Oh, thank you. Is that the Mendoza

Scott Benner 50:29
line for this? Like, yeah, not dying. Wow, like that. That's the bar. And so I said, Well, what are their agencies? What were their blood sugar's during the day while they were here? How well were they able to think about the things you were teaching? Their blood sugar's 250? All the time, where they cloudy? Were they always worried about being the kid who, quote unquote, passed out at school one time? Like, like, what if we make their lives healthy? And good? Like, I think that's doable. And so when I put it on them like that, and I said, How about I just take care of this? And we keep you out of it? Oh, no, we have to be very involved, blah, blah, blah, blah, blah, because that's how they always did it. And then I said to them, you know, what, if I'm making the decisions, you don't have any legal liability, and they went, Okay, when do you want to start? And that was it. As soon as I took away their liability, they didn't care.

Melissa 51:15
Absolutely. And you know, what, this year's D, which is diabetes management plan that they gave me, I got in the mail at the end of the school year, it actually has somewhere on there, like parents are able to make, you know, decisions against the carbery. Things like that.

Unknown Speaker 51:31
You need Yep,

Melissa 51:32
yep. And so I mean, an AR endo is pretty awesome. He will I mean, and so that leaves me another I'm, we're going to end next week, and I am a little bit nervous about telling them about looping, because we've been only doing it since May. And we haven't seen him since then. And I don't know how he's gonna react or what he's gonna say or what he wants for us to do. But I know that and that was my decision I need to kind of make is like, how independent do I want Chloe, I don't necessarily want him to check the box. fully independent, even though you can do a lot, because I know them. They have zero responsibility and taking care of her. And so I need that kind of still where Yes, she's mostly independent, but they'll need some adults, you know, help. Okay.

Scott Benner 52:20
So I'm looking at a text message here from Christina, Christina. Nobody knows who you are. So don't worry, when I read this. She's trying to get the same thing set up at school, you know, where they make decisions. And they, they're out of it. She said she walked away from the windows office today on the medical plan stating that, quote, child self manages his diabetes with direction from parent through text messages while in class.

Unknown Speaker 52:44
I like it. That's perfect. And

Scott Benner 52:46
that is perfect. And when I and she's like, you know, she's like, well, now let's see what they do. You know, when I go in there, and here's the only thing I said to her, be direct, be nice. Remember that you're not asking permission. You're informing them. Right? You're not in there asking if it's okay. You're in there, letting them know that this is what's going to happen. And let's get it in, you know, we can I can do whatever you need to make it comfortable for you. You're not you're not asking permission to your kid. Right? Right. It's their health, right? You're, you're telling them what's going to happen. Imagine if your kid had, I don't know, cancer. And they needed an infusion of something every day at one o'clock in the afternoon. And they were like, and we're not comfortable with that. But you'd say I don't care. It's keeping them alive. And they'd go, Oh, you know what cancer? Yeah, I guess so. Because they think of that is more dire. Yep. And it's no more or less dire than what you're doing. But you write your thing doesn't like infuse them with fear. Like, Oh, right. Your kid will just get a little busy. That's okay.

Unknown Speaker 53:48
You get them a giant juice bar.

Scott Benner 53:52
They'll hang out with the nurse. It'll be fun. Yeah, except for the 45 minutes of math that she she doesn't get mad. Yeah. And then three years from now I think she's got a head injury because she can't add Yeah, I mean, like yeah, now Come on, but you're doing the right thing.

Unknown Speaker 54:06
I got it. I love it. I think you're gonna do well with it.

Melissa 54:09
Well, thanks I'm gonna try I mean every year is worth a try you know what I mean? And and I do I feel more of an obligation or I not an obligation or responsibility for those that are coming I just I feel like a lot of type one parents don't realize what they can ask for you know, from a school or what you know, the schools can do and should do you know, a lot of times they let the school direct them on what they're going to do like Whoa, I got the iPad to follow on a dex calm, other parents were like, what? They didn't tell us that they gave you an iPad and I said, Well, you need to go in there and say I want an iPad for the health tech. Follow my kid you know, and so it just things like that. I mean, it's just they're never gonna disclose more than they have to and offer more than they have to pay for and I get that phone today. Actually the

Scott Benner 54:56
feeling I have when I get in bed at night and I look over at Kelly and I think Would she be amenable to sex right now? And yes, and if she would be, she doesn't tell me that, right now I have to I have to ask because if I because she's trying to get to sleep, you know, like I get, it's a very similar situation like, and you're sitting over there thinking I do it. But if he doesn't say something,

Unknown Speaker 55:17
yeah, I'm gonna go right to bed.

Scott Benner 55:20
Everyone, here's the truth. Everyone's looking out for themselves, which is not a not a bad thing. And, and the school is doing the same, they're trying to limit their output of cash, their output of manpower, their output of responsibility, the minute they tell you, you're going to do something, that's the minute that when they don't do it, you can sue them. And so they're trying to stay out of actionable situations. totally understandable. And you and you want the whole world to know, which is beautiful, by the way, thank you. Thank you, for me, and for everybody else listening. But let me rain a little bit on that rainbow for you for a while. It's this is the struggle, it's always been the struggle, it's always going to be the struggle. And it will always be people like you who yell louder and make it in this moment, better for the people around. But in that same school district five years from now, someone else like us gonna come in, see the same thing. And it's going to start all over again. It's just it's a cycle. It's something's about society are so big, you can't fix them, you can only bump and nudge them into line. Do you know what I mean? Like, not see, I've done the thing here, where? unintentionally, I've brought it back to diabetes. But but it's diabetes is such a big idea that even with a great algorithm, or a dex calm or insulin pump, or all that stuff, you're still going to get low once in a while. I don't know where you're still gonna get high once we're out of nowhere, there's no perfecting it not right, not right now. And it's the situation at schools the same thing. You just, you're just gonna have to bump and nudge when things get out of whack, but mostly, just trust that the world's been spinning for a long time. And you're probably going to be okay, most of the time.

Unknown Speaker 57:05
Yeah, that's it. Yeah.

Scott Benner 57:08
I feel like I've dropped a lot of wisdom here, Melissa.

Melissa 57:10
Yeah, you did? You really did? Well, actually. I mean, I know, I really do feel like, you know, I think, you know, when it's when it's involving your child, you know, like the mama bear comes out in here, like, you will take great care of my child. Yeah. But I think, you know, in reality, you helped me answer a lot of like, uncertainty of what I was going to do with my child this year, as far as how much responsibility she was going to have. And I think, you know, I think it becomes clear that and I felt it this way last year, too, but, but I really do need to trust the people I trust the most to take care of her. And the rest of them that they say are qualified to take care of her. And you know,

Scott Benner 57:48
they're there to call 911. Totally, yeah.

Melissa 57:51
I don't even know if they know how to do glucagon. I mean, I really don't know. But let's hope that they don't. I don't hope I can get the nasal one so that no one has to mix the powder with a liquid because that probably is undoable for some of them. There's

Scott Benner 58:03
another one coming to that's not nasal. It's still injectable, but it's pre mixed. Oh, I think that's gonna be on the podcast in a few months. So

Unknown Speaker 58:11
okay, that's cool, too.

Scott Benner 58:12
But yeah, listen, here. Here it is. It's so funny. I, you and I just took this episode that I thought I was just gonna probably fall in line six months now. And now you made it something I'm gonna put out next month right before back. Oh, yay. Because because this is what people because you are trapped in the same trap that everyone gets trapped in. And somebody like me, who's so much farther down the path than you is that stuff, they're going luck. A lot of the stuff you're worried about is not going to be a problem. And a lot of the stuff you're concerned with isn't fixable. But here, here's the way to like negotiate through it without me self mental and by the way, without making the school hate you. Or, or turning you into the crazy mom, because that's what they're gonna think. Yeah, I heard I can still hear myself standing in that office saying, You don't understand what could happen to her. And I'm like, and I look back now and I'm like, Oh, they must have been there like and because they didn't understand. They must have thought, Oh, look, he's out of his mind. Isn't that sweet? You know, and so, and they're never gonna understand because they don't have diabetes.

Unknown Speaker 59:08
Right. Right. But

Melissa 59:10
no, absolutely. I feel like I said that. I feel like I have said that. You know, like, you're just not getting it. You know? So I agree. I haven't gone crazy yet, but I

Unknown Speaker 59:19
felt moments of it before you

Scott Benner 59:21
explain. No matter how accurate you are. The crazier you sound.

Unknown Speaker 59:25
Yeah. No, I get it.

Scott Benner 59:27
She has to have gummy bears with her at all times. Yeah, something like that. Yeah. Somebody with diabetes. Everyone else hears, hey, there's a lucky lady in the office. What time's lunch? They're in a different world. And so and so. Take them out of your diabetes. Well, like you know, leave them there for the things you need them for. And yeah, and don't get me wrong to some of you are listening right now. Going nurses. Excellent. And this is all Bollea. Sure if your nurse is excellent. You're not Melissa situation. Yeah. And good for you. You know what I mean? Like, yeah, do whatever you want to do. I'm telling you that for 18 hours a day Your kids at home with you. You're managing the way you're managing. If it's going really well, there's no reason to give that away while they're at school. That's all, you know. Yeah, no,

Melissa 1:00:09
that's the exact point. I mean, that is it hard to relinquish control, someone who doesn't quite know what they're doing? I am, and I am jealous of the people who have really great nurses who are, you know, working or even aids that are with their child all the time. You know, it's just not my world.

Scott Benner 1:00:25
You're lucky. Yeah, that's, that's an amazing someone else can come on and have in the past in the last year, somebody's been on news, like, my kids, you know, bah, bah, bah is amazing. I actually have had on a parent, and the person who aids the kid at the school like in like succeeding weeks, and, and it's an amazing story, when you have something like that. That's crazy. Cool. But most people don't. And by the way, your situation was said to go the other way, is about a million times better than a lot of other people's situation. Yeah.

Unknown Speaker 1:00:53
As

Scott Benner 1:00:54
you think it is. People out there right now are going like, wow, I wish Yeah, right. I

Melissa 1:00:58
get it. No, I get and you know what, I remember listening to one of your podcasts, that was someone who privately hired a type one college student, and you know what I'm talking about? And they went into the school and Yeah, kind of shadow the kid. And I thought that was so cool. But I also don't have that kind of money to have, you know, someone come in and do that. Yeah, totally. I thought that, but I thought what an amazing fix to what they're, you know, and they're capable of doing. And I just thought that was so smart to hire someone who is, you know, capable of taking care of their child at school. I mean, that is another example. Maybe they didn't really trust the system there too. So

Scott Benner 1:01:35
your gardener or your, your cool? Yeah,

Unknown Speaker 1:01:37
no, no, I

Unknown Speaker 1:01:40
got a giant yard, you know?

Scott Benner 1:01:43
Listen, I think everyone, so you're making the point that no matter what situation you're in, there are some tools at your disposal. Mm hmm. Some people can afford to, like, you know, hire someone to go to school with their kid, that's me if that if you can do that, you want to do that. That's amazing. But there are tools at your disposal to the mistake, the mistake I don't want anyone to make is to look at the system. And think I can't change the system, or stop because you're right, you can't change the system, although some people have made inroads, but it's an there was someone on from Texas A long time ago, who literally changed the way their entire school system handled diabetes. But, but it was an undertaking that, you know, it didn't happen, like with a phone call an email in time in time for your kid to go back to school. Right? So, um, and so I think you just have to, you know, you have to look at the course you're running and just run it like, you know, don't don't run into walls, don't scream and yell at people who aren't listening. Just do what works. You know what I mean? Like, yeah, I agree. Yeah, in the apocalypse, Melissa, when the zombies are coming for you. You don't stop and go, Well, they're gonna kill me because I don't have a stick with me. You look around for something else, and you keep fighting, right? So you're in that situation, like, it's not perfect. It's not perfect. But stopping is not really an option either.

Melissa 1:03:01
Totally. And it's not as bad as it could be. Like you said, it's not as that I mean, we really do have an amazing health tech that loves my child, like her own and that person. If she wasn't at that site, I'd be probably a lot more nervous. But she is there and she leaves for one hour and in that hour time have lunch, you know, I just have to hope and pray everything just kind of falls in line. And you know, and like I said train and probably talk a little bit more about what my daughter condition like she's hypo and aware. So that's, but thank God for the dexcom because I could be like, Hey, girl, you need your sugar, you know? Um,

Scott Benner 1:03:38
so yeah, well, Melissa, we are at the end. I know it probably seems unlike that because so easy to talk to me and everything. But I have and I have another call coming up, like in a couple minutes. So I have to jump. I will let you know when I'm putting this on. But like I said, I'm very much leaning towards the end of summer, early fall. So thank you so much for for sharing your story. And yeah, thanks for No, I really appreciate it. I really do. I'm sorry, I'm jumping so quick that usually a more

Unknown Speaker 1:04:04
No, no, no, don't worry. I get it. Thanks so much. All right. Have a good day.

Scott Benner 1:04:10
Well, thanks to Melissa for sharing her insights. I thought it spurred great conversation. I'm really sorry that I sat on this episode for so long, but I was trying to do the right thing. And we'll see what happens. Anyway, thanks again to Contour Next One that's a blood glucose meter you should know more about and of course the touch by type one. You can find them at touched by type one.org. And the Contour Next One, is it Contour Next one.com go there to find out if you're eligible for absolutely free meter today. Hey, who remembers Episode 53 Terry lives on a boat? Well, Terry is going to be back later this week on the podcast to do a follow up. It's a really terrific conversation a little longer than they are usually but I had such a good time and Terry did a companion blog article. To put on my blog to go with it. So, you know, look forward to that is what I'm saying. The way I got Terry back on, by the way, is by asking online for people's favorite old episodes, who do they want to hear from again? And Terry came up a lot. If you have other such thoughts about people you've heard on the show, before that you'd like to hear again, send me an email, let me know. Maybe it'll happen. Thank you so much for listening to the Juicebox Podcast for sharing the show with other people. And the wonderful reviews and the wonderful reviews that everyone's leaving on Apple podcasts through their podcast app. Really cool. Thank you. This show is about to have a milestone month, and about to run into a milestone. huge milestone for the rest of it. It is almost completely due to how much effort you guys put into sharing the show. I'm giving myself a tiny bit of credit for making the podcast. But I mean, seriously, I could be making the show and you guys don't share it and it just doesn't grow. So thank you so much. Have a great day. I'll see everybody soon. Wash your hands.

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more juicebox

#1740 Bolus 4 - Potato Chips

#1739 Smooth Operator - Part 2

#1738 Smooth Operator - Part 1

#1737 Gesundheit

#1736 With Haven

#1735 To The Moon And Back - Part 2

#1734 Defining Diabetes: Priming

#1733 To The Moon And Back - Part 1

#1732 Squooshie Pushie

#1731 Medtronic for the Win

#1730 Fat Beagle

#1729 Cinderella Story - Part 2

#1728 ADA Standards of Care for 2026

#1727 Bolus 4 - Applesauce

#1726 Cinderella Story - Part 1

#1725 2026 Kickoff: Bloopers & Big News

#1724 Emma's Dad - Part 2

#1723 Emma's Dad - Part 1

#1722 DKA Has Been a Problem

#1721 Runny Eggs

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

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Scott Benner 6/19/20 Scott Benner 6/19/20

#347 Defining Diabetes: Bump and Nudge

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.

Check out the Diabetes Pro Tip episodes and Juicebox Docs

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
This episode of defining diabetes is brought to you by Dexcom Omni pod. The Contour Next One blood glucose meter and touched by type one. Please visit touched by type one.org dexcom.com forward slash juicebox. My omnipod.com forward slash juice box or Contour Next one.com. To find out more about the sponsors. In this episode of defining diabetes, Jenny Smith and I will be defining bump and nudge. 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's 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 or 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 if you know anybody who's helping you with type one, you have one like that, that you'd love to share with other people? Where are you looking for one that fits that description? Check out juice box docs.com. If you do JUICEBOXDOCS, 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. I want to do bump in nudge as a defining diabetes. And I actually want to do it later as an add on to the pro tip series. But for now, this is just a small definition. Listen, I don't pay any attention to what other people are saying in this space, which is sort of part of how I've come to say things in my own way. I don't know if I made this up or not. I feel like I put these two words together. Maybe you know, I don't know if I did or not I think I did. But when I first started saying oh, you can just kind of bump or nudge. To me in my mind. Somebody asked me this recently. They're like, I've always been dying to know when you say bump. Are you talking about insulin or food? And when you say nudge, are you talking about insulin or food? I was like, Oh, that's interesting.

Jennifer Smith, CDE 3:05
I know how I think of it. But yeah,

Scott Benner 3:08
I bump with insulin and nudge with food. What do you do?

Jennifer Smith, CDE 3:13
So it's kind of funny, I bump with food. And I know.

I kind of think of it the opposite way. But yeah,

Scott Benner 3:23
so it doesn't matter how it occurs to you. It's the idea of, you know, staying between the lines on the road, right? Just, you know, the the way you'll hear me if if you hear me in public talking about it, I'll just say, you know, when you're driving and you begin to drift and you touch the yellow line on the right, you don't yank the wheel back to the left, because then you end up swerving into the other lane, you just want to kind of bring the wheel back almost an imperceivable amount and bring yourself back in line again. Yep. And that's how I think about blood sugar. Say I see a 110 diagonal up, I want it to be 90. And, you know, the way that that made sense to me originally was what I noticed, you know, in the beginning, was that it took a much less insulin to stop 110 and bring it back to 90 than it did to stop 150 or 200. And then when I started using more and more insulin that started creating lows later, which then created a need to feed the insulin right. And, and I thought okay, well, I'll just keep bumping it back down again. And then, you know, I was like, Oh, why am I always treating with 15 carbs? Like who who did that to me, you know what person said 15 carbs 15 minutes, you know, and that was such a long time ago doesn't apply to now I have this technology and someone works differently. Blah, blah, blah. So I started I started doing this thing where like, I don't even know how to describe it. Like I put the juice box in Arden's mouth. And when I was like, That's enough, and I'd be I'd be like, that's it. It's over. She didn't want it anyway. So she was cool with not drinking more, right? To try to nudge you know, a blood sugar that's falling. Just Just get it back level again, right. You hear people talk about You know, I use for Skittles, or they know like, you know, but but most people, once they rip the package open, it's that feeling of like, well, there's 15 Skittles in here, and I'm not wasting, I'm gonna eat them all, I prefer to you throw away eight of the Skittles, you know, but and so this idea of bumping and nudging is an idea of how to keep stability, you know, with your blood sugar. Now, when I developed that, you know, for Arden and then shared it on the podcast, I didn't realize there was going to be more to it moving forward. And that's why there is, if you're listening to this, there is a pro tip somewhere about bumping and nudging, you should go find it. Because if you find yourself bumping and nudging too much, something's wrong somewhere, right? So it's a great tool for variable days, you know, when things aren't quite going right, but doesn't, you know, I think of it, I use it mostly still around Arden's period, because I have settings for Arden, that when she's not hormonal, it doesn't look like she has diabetes. And the minute hormones come into the picture, you know, there's needs that change for insulin, but I don't want to go make all like, I'm not gonna make a across the board changed all of her settings. So that four days later, when her hormones like settle back down, like I don't want to go back and forth. So I find myself bumping more nudging more in those uncertain times. I probably just talked way too much about it. But I do really want to think about I want to hear about how you use it in your life.

Jennifer Smith, CDE 6:48
No, that's the that's the same I and I think it goes back to making sure that for the most part, your settings are well set, because the variables are the place where you would expect to need the bump and nudge concept. You know, on the days, like you said, from a hormone standpoint, or I ended up spending, you know, six hours at the park today versus only being there for an hour, like on other days, right? Those days might be the ones where you use a little bit more bumping and or nudging, depending on what's going on. But overall, on your standard day to day, if settings are right, you really shouldn't need to be using that concept all the time. Yeah. And if you are, something's not quite right, or you're maybe not using the advantage of some of the smarter features on of your pump.

Scott Benner 7:44
So that you don't have to do that all the time. It's an interesting tool in that it's functional and diagnostic at the same time, you know, when you need it, it's a it's an amazing functional tool for type one diabetes. But if you need it too much, it is a red flag. It's a Hey, we're there's something going on here. And so bumping nudge to me is more of it started as a functional tool for me, it'd be it morphed into a diagnostic tool for me. And and it's just as simple as I find myself thinking, we're bumping a little too much lately. You know, what Arden might need a little more insulin, you know, we're not doing a little show or whatever. And Jenny has the exact opposite thought she thinks I'm pumping a lot lately. Maybe my insulin is too strong. And but it doesn't matter. However it makes sense in your head is what matters. And you can, by the way, make up two different words. I don't care. You know, I mean, off the top my head, and I don't know what they would be. But again, I'm sure you could type in bump synonym into Google and figure it out, make it your own thing. But I think that um, it's just it's very important because we watch blood sugar's move, and don't do anything about it thinking, This is my ratio, I did the right thing. This is right. And, and then what happens later is people say to me, Well, how do you know how much and that's the stuff I want to dig into into in a pro tip episode. So I'm going to leave this one here. It's a good definition for what bumping nudges if it sounds interesting to you go find the diabetes pro tip episodes. And I mean, personally, I wouldn't jump right to bump and nudge I'd listen to all of them but you'll get to it at some point. I genuinely believe Jenny By the way, I'm gonna leave this in this episode here that those episodes that you and I have done together. I think they move people's a one c point and a half. Like I think people are seeing like a point and a half out of it. I think I and then there's gonna be

Jennifer Smith, CDE 9:45
great to get some statistics just off of that, you know, even even a question or a survey to say hey, you know, for those of you who are listening to the pro tips, how much if any change Have you had in your a one See, that'd be great to collect,

Scott Benner 10:01
I'll say this out loud here, most people won't understand these words. But if the Helmsley foundation is listening, I and you want to find out if a podcast can actually make your health better, hit me up. I need a little help with the website in the data collection. And you know, a couple of dollars might not hurt that. Cuz I don't know how to do it on my own, that's for certain. Okay, so that was bumping and nudging. Hey, here's some quick contact information for the sponsors. If you're interested to get the dexcom g six continuous glucose monitor, you're going to want to go to dexcom.com Ford slash juice box, and hit the button that says get started with Dexcom g six, it's just that simple. If you get there and you want to read a little bit, definitely check into it. Zero finger sticks, customizable alarms, and alerts, smart device compatibility with Android and iPhone, the ability to share data, or data just depends on where you live in the country or the world. Although right now, some people are like it's data, or data, you're fighting with each other, but you're just fighting with a voice in your head. So don't do that. Anyway, no matter how you say you can share that data with up to 10. People, it's amazing, right? Your kid could be at school being tracked by their mother, father, grandmother, school nurse, maybe even have your neighbor follow along just to know in case of emergencies, you know, for people who like their neighbors, so all seven of you who like your neighbors, that's an option. Anyway, dexcom.com forward slash juice box, you're also going to want an omni pod tubeless insulin pump that you're going to get my Omni pod.com forward slash juice box. And on the pod has quite a little deal where they'll send you a free, no obligation demo of the Omni pod to your home so that you can wear it. While why I've worn it on the pod demo before. It's astonishing how quickly you forget you're wearing something. And you'll really get a feeling for what it's gonna be like to have a tubeless insulin pump, right, just this little device that's with you, and nothing else to clip to your belt or stuff in your bra or do anything like that. And there's no obligation. So I mean, if it doesn't cost anything and not holding you to it, you might as well give it a try my omnipod.com forward slash juice box Podcast course if you go to Contour Next one.com. There's a button at the top of the page to see if you're eligible for an absolutely free blood glucose meter. And I have to tell you, I've a little more context now because at the moment, I'm wearing a Dexcom Pro to get the feeling for it. You'll hear me talk about that later. But because I'm doing that I'm testing a lot. So not just with Arden, but I'm testing myself to get a feeling for you know where the CGM sitting with accuracy. And all that stuff that I've been telling you has been my experience about using the meter with my daughter goes double for me. Small, convenient, accurate. pocket size. It's great, the light works great at night. And trust me My eyes are don't I mean, not what they used to be Contour Next one.com. And of course, touched by type one, please, please, please go to touched by type one.org to check out the good work that these amazing people are doing. For children living with Type One Diabetes. And people with type one diabetes in general. They raise money to support a cure. They put on all these kinds of great programs to support the community, you can be part of it touched by type one.org. plays out, I'd like to remind you about a couple of other I don't want to call them bonuses, extras freebies, that the Juicebox Podcast offers. First one I mentioned at the top of the show juicebox Doc's calm it's my list of listeners, favorite practitioners, CD ease, endocrinologist, anybody who's helping you with your type one diabetes, these are people who are forward thinking, technology friendly, aren't going to give you a bunch of problems when you come in and show them a graph where you haven't been low, you know, in three months, maybe more than like 2% of the time and you're a one sees in the sixes or the fives you're gonna want somebody who celebrates that with you. Not yells at you. So if you don't have that kind of a doctor check out the list. If you do have that kind of doctor, add them to the list juicebox Doc's calm I'm going to talk right past the music Do you mind? me Get Ready? Mm hmm. In the call me one take Scott. Watch this. No, no, hold on. Don't worry. Got a little thing caught here. Hold on a second. I might be Hold on. Make a drink. You know what? I'm all clear. Okay.

Diabetes pro tip.com. You know, at this point that there are I don't even know how many 20 Pro Tip episodes with Jenny Smith and I, if you need to find them quickly, diabetes pro tip.com no s take off the last s for savings. There's actually no savings because the podcast is free. But you know what I mean? diabetes pro tip calm if you're looking to revisit or share those episodes do that. These defining diabetes episodes are also there. If you scroll down, I think ask Scott and Jenny is there as well. If it's not, I should put it there. And maybe I will. What else? Oh, the private Facebook group juice box discussion group. 3500 members strong at this point. absolutely free place for people to talk about their type one diabetes? Are you low carb, great. These people talk about with you? Are you like, Hey, I don't do low carb, no problem. The low carb people and I guard people don't even fight with each other. It's a utopia. Seriously, people are there talking about management ideas, sharing their successes, giving each other encouragement, thoughts, whatever you need. It's there. And it's a great place. Now if you're a jerk, don't show up there. If you're looking to do the normal, old, you know, Facebook, arguing with people thing, this is not the place for that this place is lovely. If you're the kind of person who could be lovely to juicebox discussion group on Facebook, find it do a little search. There might even be a link here in the show notes. Hmm, what else have I done? What have I done? That's from The Nightmare Before Christmas, you wouldn't be able to tell? Because I have a terrible singing voice. Oh, leave a great review for the podcast. If again, that'd be terrific. Right there in your Apple podcast app, five stars. I love this pocket. Actually just don't do that. Right, something thoughtful. It helps other people be able to trust that they should check out the show. So if you've had a great result from the podcast, and you'd like someone else to also have a great result. A wonderful review would help that along the way. Not only that, share the show with someone else. pimp it out. Be like, hey, this helped me here's how, here's how you check it out. That's how the show will grow. I felt like that was gonna rhyme in that it didn't wait. It did show and grow rhyme right. That's how the show will grow. That was weird. I thought it was gonna rhyme. It did rhyme and then I doubted if it rained. I don't even know what that says. Thanks so much for listening to this episode of the Juicebox Podcast. There of course will be many, many more. We're not like podcasts. It's like here's one and then wait four weeks. Here's another one. This one sounds terrible. But I'll let them listen to it. Anyway. That's not what you're getting here is the well run show. Understand. You come back. you subscribe. Are you subscribing? Do you? You've hit subscribe in your podcast app, right? Oh my god. Are you listening online? What do you mean like 150 years old? What are you doing? Get a podcast app on your phone and hit subscribe. People. I just had an imaginary argument with a person who doesn't exist. Yeah, I think it's time to stop this.

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more juicebox

#1740 Bolus 4 - Potato Chips

#1739 Smooth Operator - Part 2

#1738 Smooth Operator - Part 1

#1737 Gesundheit

#1736 With Haven

#1735 To The Moon And Back - Part 2

#1734 Defining Diabetes: Priming

#1733 To The Moon And Back - Part 1

#1732 Squooshie Pushie

#1731 Medtronic for the Win

#1730 Fat Beagle

#1729 Cinderella Story - Part 2

#1728 ADA Standards of Care for 2026

#1727 Bolus 4 - Applesauce

#1726 Cinderella Story - Part 1

#1725 2026 Kickoff: Bloopers & Big News

#1724 Emma's Dad - Part 2

#1723 Emma's Dad - Part 1

#1722 DKA Has Been a Problem

#1721 Runny Eggs

Donate

Scott Benner 6/17/20 Scott Benner 6/17/20

#346 Dumpster Fire

Ally from has T1D and a PhD

Allyson Hughes, PhD works at T1D Exchange, has Type 1 diabetes and a great laugh. In this episode we talk about insulin prices, Ally's research, sh*tty people and more random topics that led too this episode being called 'Dumpster Fire'. Warning: some bleeped cursing.

click > for Ally’s research, ‘Impact of Medicare Continuous Subcutaneous Insulin Infusion Policies in Patients With Type 1 Diabetes’.

Check out the Diabetes Pro Tip episodes and Juicebox Docs

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:03
Hello, everyone, and welcome to Episode 346 of the Juicebox Podcast. Today, I'm going to speak with Ali who works at T one D exchange. Ali has type one diabetes. And she's responsible for some very cool work around type one that we do eventually get to talk about, actually, if you want to see alley study, it's on Juicebox Podcast comm on the page for her episode. The reason I say we eventually get to it is because I was having a particularly odd week when I recorded with Allie. And I was in a bit of a mood, I guess. And this went everywhere. I find it incredibly interesting. I think it's funny, I think you're gonna laugh, I think you're gonna learn things if you stay till the end, I'm gonna say some crazy stuff. But it's a really entertaining episode. I'm proud of it actually. It's, it's good entertainment wrapped around type one diabetes, and I call it dumpster fire. I almost called it here and now and later. But anyway, 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 health care plan for becoming bold with insulin.

This episode of The Juicebox Podcast is sponsored by touched by type one, if you want to check out an organization doing wonderful things for people living with Type One Diabetes, all you have to do is go to touched by type one.org, you're going to get your fill of goodness. They just want you to know about them. And I want you to know how much I appreciate what they're doing. Touched by type one.org. Okay, buckle in, we're gonna get going. It's a longer episode very conversational, a lot of laughing some really good information, insight into things that I think and Alli thinks and stuff about the type one space in general, I think you're going to like this one. I had a lot of fun making it. And just now when I finished editing it, I thought I have never left so much sitting in editing a podcast before. So I hope you feel the same way. This is Ali. I maintain that if you told me this, you know the secret to life itself was at the end of a one hour podcast that I had to listen to. And the entire time I was listening, one of the people being interviewed was like clicking their lips together. So I'd be like, you know what, I don't need the whole secret to life. I'll be fine. Like, and so she'll say to me, sometimes you're up there editing for a while and I'm like, Yeah, the person and a lot. And so I i lovingly take the arms out. And not all of them. First of all, they make the person sound a little better. But yeah, but secondly, for the listener. And I don't know if it's just me like and you're from the northeast to like maybe you know, like the other day online, someone said, he talks so fast. And I thought, I know like 15 people that talk circles around me like you know, it's fine. And then you realize they're shorter from the south a little bit. And everybody's a little calmer and easier. But when I'm listening to something, pregnant pauses give my brain enough time to yell at me. So when when I'm listening and I hear silence my brains like shut off. This sucks. Yeah, yep. I just feel bad when I met I have no idea.

Allyson Hughes, PhD 3:41
Yeah, no, uh, I guess for me with like, my my background like I grew up in Ohio. I did my schooling like all my training in Texas. And then now I live in Boston for my job. And so like, I have these weird like accent things that I do where sometimes like Boston comes out. And sometimes Ohio or Texas comes out mostly road rage sort of thing, but can be anything but yeah, no, I really appreciate that.

Scott Benner 4:09
I mean, right now, there's just nowhere worse than Boston to dry. I mean, there's a few places Connecticut's a disaster.

Allyson Hughes, PhD 4:15
Yeah. Oh god, my husband drives for me. I'm gonna be real honest. He's like, he just like carts me around the city if I need it, because I just can't and I won't I think we moved here about a year ago and I think I've driven like eight times to see no joke, is

Scott Benner 4:29
he afraid you're gonna cost the family money? Like you're gonna murder somebody or get into it? Oh,

Allyson Hughes, PhD 4:34
yeah, he definitely has like control issues with driving and so they'll just get really anxious is like, Oh my God. And then you know, I've got it when I'm the passenger. I've got the death grip on the other. So yeah, we we should not ever be in the same vehicle together. We just make each other and

Scott Benner 4:49
I had to drive to Boston three times while my son was recruiting for God each time I dreaded it because it's not just a five and a half hour drive from where I live, but it's through Through Connecticut, where those people for some reason won't change a lane. And so they've been brainwashed their whole life growing up to think I just get in the lane and I stay there and I'm like, Alright, I'm not looking for you to be like, in a Formula One race car, but if you know, could you have a little bit you know, anyway, I probably shouldn't be allowed to drive either. Okay,

Allyson Hughes, PhD 5:18
no, yeah, I was just gonna say we drove to do the move we drove here from Texas. And, and I just was so angry at the end, you know, I was just ready to leave my husband and you know, and Indianapolis one of our stops, I was like, we're done.

Unknown Speaker 5:35
It's enough of you and the whole thing. The whole thing. So mistake, what do you mean the move?

Allyson Hughes, PhD 5:40
We've been together for like 11 years and I just was so angry at him, you know, cuz nobody in a relationship should ever be in that kind of situation. We It was

Scott Benner 5:47
so bad to our house down and rebuilt a house like we owe this tiny little junky house and with this goal of building a house, right. And as the construction started my, my, at the time, my, my son's kindergarten teacher, who he hadn't even had in years, you know, they mean just I bumped into her somewhere She goes, I see you're building a house, and I was like, she's got this long cigarette, and she's like, just old lady just drawing on this cigarette. Like she's seen life. 16 times. She's not afraid of cancer, nothing like that. She leans into miracle She goes, if you don't get divorced doing this, you'll be married forever. I was like, what she was one of the worst things. And then she just a drag on a cigarette and walked away from me. And I was like, you're the lady who taught my son kindergarten. How about that?

Unknown Speaker 6:41
Oh, god, that's terrifying. I was

Unknown Speaker 6:44
just like, Oh, great, because we already like got the loan. So

Unknown Speaker 6:48
Oh, my God, that's amazing.

Scott Benner 6:51
I love that she wasn't wrong. My wife and I had an argument about cabinets that I thought was gonna like end with the police arriving.

Unknown Speaker 6:57
Yeah, seriously. cabinets are a big thing.

Scott Benner 7:01
I didn't know at the time.

Unknown Speaker 7:05
Amazing.

Scott Benner 7:06
minutes little podcast now Please introduce yourself.

Allyson Hughes, PhD 7:10
So my name is Allie Hughes and I have had type one for 23 years. And by the time this airs, it's probably going to be 24 years.

Unknown Speaker 7:19
Is that a dig at me alley.

Allyson Hughes, PhD 7:22
I'm very close to my anniversary. It's in December. So we're filming in September. So

Scott Benner 7:28
I got I got I got, I got a lovely note from a guy the other day, and it was so nice. It just said, Hey, listen, if you've decided that my episode wasn't good, just let me know. And I typed it, I answered it back. I'm like, What are you talking about? Well, it's been months. And I was like, oh, and it's gonna be more months. So just, oh, it'll be a nice surprise for you when it comes out. You know, I just I have a very, I don't know if I've ever said on here. I'm sure I have at some point, but I'm not a well thought out person. And so I am soup. The minute I sold an ad on the podcast, I became like Uber responsible about it. And I thought I can't not have an episode ready. So I started recording ahead. And at this point, now, I probably could, I could probably stop recording right now. And the podcast could probably run for four more months. That's incredible. Yeah. And so I like that, because then I get it. Sometimes I'm like, Ooh, this episode. I was gonna put up three weeks from now. But it makes so much sense against the thing that came out last week. So I can sort of like play with it a little more I love. But the problem is it sucks for the people who record it. Then I'm like, hey, that'll be out in the spring. You know? The guy I told the other day, he's like, I'd like to come on the show. I'm like, I'm really interested in this. Do you have an ability to book in August? And he goes, it's September and I went, yeah, I mean, next year, can you book in August next year? So anyway,

Unknown Speaker 8:57
yeah.

Scott Benner 8:58
I felt what you were doing right there. So yeah, just screw you your episodes. I

Allyson Hughes, PhD 9:05
know, I talked to my mom before this. And she was like, Oh my gosh, when do I listen to it? I said 2020 the gas.

Scott Benner 9:15
So I played a couple things in life. Not most things. By the way. If you came up to me right now and wanted to buy a spaceship with me, I'd be like, Yeah, I would give that no thought whatsoever. I'm like, you think we could get a spaceship alley? That I wouldn't play it out at all. Anyway. All right. So you have what? How old? are you now? I'm 3131 diabetes for 24 years. Did you say? Yes. When you're seven years old? Yep. Okay. Seven years old. In Hold on a second. 2019 Now let's just call it 2020. For simplicity, was it around 96 it was 95. You were you were diagnosed the year before I was married.

Unknown Speaker 9:56
It's not incredible. No, it's mixed.

Scott Benner 10:00
This podcast is over. Never mind. I know you don't mind me that I'm old.

Allyson Hughes, PhD 10:04
No, I'm at the point Scott though when I talk about like old diabetes tech that I used to be on and used to use, I literally just start with I'm a dinosaur, and start giving examples of what I was using. It's, it's incredible to think how long it's been

Scott Benner 10:19
no. And you make a great point, honestly, because the other day someone asked me how long Arden has had type one. I said, Oh, just when she's two, she's 15. I was like, 13 years a little more. And that person whose kids only had diabetes for two years was Yeah, I was like, Oh my gosh, that's an incredible amount of time. And you just doubled Arden.

Unknown Speaker 10:37
Yeah, yeah. Yeah. What, um, what was your

Scott Benner 10:44
My biggest concern with having a kid that was diagnosed so young, I'll never forget when they were trying to be like, comforting at the hospital. They're like, hey, the long term effects of diabetes take 30 years to show up. And, and I was like, but she's too. Yeah. So you mean when she's 32? Like, and then that's stuck with me? Like, I thought, oh, when Arden's 32 she's gonna have problems. Uh huh. Right. And that, yeah, that was like, that wasn't nice to say to me, or was it? Or was it thoughtful? Like, I don't know. But did you ever worry about that?

Allyson Hughes, PhD 11:14
Honestly, I really didn't. There was kind of like this doom and gloom, like retinopathy message that was kind of pushed on me at different points. And really, like, I'm just like, growing up. I think my, my pediatric endo was he was more worried about scar tissue than any sort of complication, you know, because I was pumping.

Scott Benner 11:37
Yeah. So the here and now problems.

Allyson Hughes, PhD 11:39
Exactly, exactly. And I appreciated that because I didn't want to think about it either. You know,

Scott Benner 11:44
I have to be honest with you. I think that here and now takes care of later. Yeah, even like when I when people tell me like, Oh, it's I'm working so hard to get my UNC down. And, you know, I had somebody telling me yesterday on the phone, like, you know, I got it to this. Next thing I'm gonna do is get down, like, you have to stop thinking like that. I'm like, just use the tools. When you use the tools, your agency will just naturally come down. Yeah, right. Exactly. And I think yeah, I think long term, you know, problems are the same thing. Like, you know, some people are just going to have, you know, their bodies aren't going to handled as well as others. But for most of us, you know, most of us, I don't have diabetes, I now can hear Chris in my head. So Chris Snyder from tide pool tells me that when he tells me listen to the podcast, and I say something like, I have diabetes, he's like her, and like, suddenly, art and he like, he fills it in his head for me. So thank you, Chris. And for all the rest of you do that. And I don't mean it that way. I don't mean to assume but, but for everyone else, I'm just sort of I'm doing the Royal week, Chris, leave me alone. Okay. But for me, but for everyone else, you know, you do the right things, and it's going to work out probably so yeah. Yeah. not worry about I was just interested if you because you were I mean, when you were diagnosed the 2424 years ago, what? What are we talking about? Did you even have a meter?

Allyson Hughes, PhD 13:01
I have a meter I think I was lucky enough for it was like it was around the time that certain air quotes fast acting insulins had been introduced. And so I was I feel like I was kind of lucky at that to be diagnosed with that time, because it was right after kind of some of the Dark Ages sorts of things of doing much more guessing. Then I really, I really didn't have to worry about a lot of guessing. I mean, obviously now compared to what I do now, with with CGM and Lupin pumping, like, that's a lot. It's just a different game. But back then. I mean, it was, I think the biggest change was really like, the dietary restrictions. Like, I grew up in a really small community in Ohio. And so my parents, like, you know, it was before the diabetes online community, so it wasn't like, you know, searching on Facebook to find the best like endo. Like in Ohio Instead, it was like, who takes our insurance? And how fast can we get in, you know, sort of thing? How close are they? And so, when I went, it was like, it was like, I was on this like, awful, like exchange diet where I was really hungry. Like, all the time, it was a Greg good, it was just a lot of food restrictions. And, you know, not a lot of understanding of what your blood sugar should look like post meal, it was just kind of, I don't know, it was just kind of putting out fires as you went sort of approach instead of more planning. And it wasn't it wasn't my parents fault. They were doing the best they have with their resources and, and what was common at the time, I feel, you know, so looking back is just so much different than my approach now.

Scott Benner 14:40
No, of course. And so, when was the Let me ask you. I had an idea for a question. And then I had a different question popped in my head. Yeah, I don't know what to do. I'm gonna go with my gut. What juncture like what was the first big leap You're technology.

Allyson Hughes, PhD 15:02
So in high school, like freshman year, I got an insulin pump. And that was just like, this mind blowing thing. You know, I hate giving shots. You know, it's it's just one of those things that it just never works out for me. I just feel like, there's no precision, you know, it's like, oh, did I get the insulin? I don't know, I just always felt like me on long acting insulin is a nightmare. I just I was having like, severe lows. And, you know, just, it was like, right around the time that a specific fast acting was introduced, I don't want to drop names or anything. And the way it was marketed is that there would be no, like, peaks in dosing over the 24 hour period. But like, I ended up low, like, every morning because of it. And so yeah, it was just kind of, you know, when new influence were introduced, or when new tech was introduced, you know, how does this kind of like, okay, even though it's been approved by the FDA, it's like, you're still kind of a guinea pig, seeing what real world usage looks like. Yeah.

Scott Benner 16:07
So yeah, they can try it. And everybody exactly the same time that long ago, that was back when you could still take a sales rep to like, you know, Hawaii. Take a doctor to Hawaii. explain to them how well the insulin work. Oh, Dr. Jones, would you like to hear about our new insulin on Waikiki?

Unknown Speaker 16:27
It'd be

Allyson Hughes, PhD 16:29
the other dare one to get ahold of a sales rep. And let me tell you, I did not get a hold of one because I was like, Wait, are they being phased out of a specific company? I couldn't even get ahold of someone to start a conversation about a specific product. Yeah, I just I felt really old. I'm gonna be really honest. I'm imagining you like a young you

Scott Benner 16:49
and your doctor's office was like, hey, this works terrific. And you're like, Dr. Jones, that's an amazing tan you have and he's like, yes, yes. Just take the insulin.

Allyson Hughes, PhD 16:57
Just take it. Just take it. Yeah, that's, that's, you know, I think that's definitely sometimes what happens. And, I mean, it's definitely, you know, not a great situation. But, you know,

Scott Benner 17:08
listen, everything has, I don't mean to joke, I'm a fan of, I'm gonna, I don't know if people will be upset at me, but I liked it. pharmaceutical companies make things that save lives, you know, I'm happy if they, if they really try, okay, when they take their insulin and change the molecule molecule just enough so they can keep it on patent that I don't particularly enjoy. Okay, but when, when when they're really trying and they're doing things? I mean, listen, you know, without a lot of different things, forget insulin for a second your life, your life would be terrible. Yeah, you know, so I would my daughter would be boiling her urine if somebody didn't say to themselves,

Unknown Speaker 17:45
what imagine?

Scott Benner 17:46
Yeah, I wonder if we can make these meters better? I wonder if you know, and now that we did that, how are we going to make money off? It will overcharge for the test strips? And? No, I mean, listen, yeah, there's a balance, obviously. I don't think it's been struck incredibly well, right now, but at the same time, everybody has a part and everybody's doing something that's helpful. And you know, and people get to make money. And I mean, I'm for that I'd like to see you make a living. And I'd like to make one. Exactly. Right. So um, I don't think you should price gouge to the, to the tune of hundreds of percent over but

Unknown Speaker 18:23
yes, I also

Scott Benner 18:24
may, I'm sorry, I didn't know this was gonna go this way. But what are your like? Do you have thoughts on that? Like, because I think it's a slippery slope idea, right? Like, so I have a medication, and I make it. And I've decided this medication costs $5. For me to make and $10 for me to get to you and Mike, out of pocket after my r&d is, I don't know. $30 for this medication, but I charge you $300 for it.

Unknown Speaker 18:51
Yeah, so

Scott Benner 18:54
I'm just I'm sorry. I was like, I really was fumbling for my next thought. But that's an unfair amount of money for you, let's say right, or just in people in general. Yeah. Right. But it keeps you alive. So it should be I hear people say all the time, it should be free. And I think, well, if Okay, I hear that. Well, what else should be free then? Should my heart medication be free? Which I don't take? What if I did? How about my cholesterol? Like, where do we draw the line on what doesn't save someone's life? And then if everything's free, because it makes sense that you shouldn't have to pay for things that keep you alive? Then how does the company stay in business to make more of it for you? Uh, huh. Right, like and yeah. And what about all the people that work for the company and blah, blah, and like getting their families and like, oh, like there's a, I don't know, like, I find it such a strange conversation.

Allyson Hughes, PhD 19:44
Yeah, so yeah, so I guess like is a two part comment on that. So like, the first part is that when you see graphs that show like that 1200 percent increase, like from, you know, 2425 years ago to now that's literally when I started mining journey, I remember picking up insulin at the pharmacy, and that was around the time it was like 25 bucks a bottle. And it's, I'm on the same insulin now, as I was saving. Yeah, I look at that I know what works. And I'm a dinosaur and I do what I want. And so, um, you know, it's one of those things where like that graph, to me, it has a personal relevance, and it's really it reflects my journey on this, you know, diabetes journey, it's the price has gone up. But at the same time, I want to say as a second comment, I actually work with researchers at Eli Lilly, that's part of my collaborations that I do in my current role as a research scientist is I work with their researchers, and we, you know, work on projects involving fear of hypoglycemia and, and things of that nature and the cost of type one diabetes, not just financial, but really focusing on like psychosocial, like diabetes, distress and diabetes burden. And so like, I know, like, many people from that company that are really good people. And so I think it's a little, it's a little discouraging to me when I'm not going to name names, but when sometimes people come forward and really go after an attack, you know, insulin producing companies, it's like, they're good people, they're and they're doing really good research, and they're trying really hard and it's not their fault, you know, that the insulin price is so high. You know,

Scott Benner 21:28
I like to say that, you know, there, I'm sure there are a few people at the top who really, you know, report to shareholders, and they probably they're the ones in charge of making final decisions on stuff. Yeah, there are plenty of people at the middle and the bottom who are doing incredibly hard, I have to say, my wife is not involved, my wife is in the safety part of pharmaceuticals. So she does the stuff that you know, you would want people to be doing, making sure reports, get to the FDA make sure things are looked into properly, that things are set up properly. She oversees the idea of your safe. And I she worked from home yesterday, I watched her walk out of our bedroom at seven in the morning. And last night, no lie at 930. I said to her, don't you think you should stop? Wow. Right. And so she sat almost perfectly still for an entire day and to you know, 12 or 14 hours, working really hard to make sure things are safe for people. And then to hear someone come along and say, Well, you know, there's here's a way of pharmaceutical, if somebody could save some money, what if they, you know, just got rid of people? And I you know, like I'm like, Yeah, okay, well, you got to be careful which ones you want to get rid of, you know, yeah. And it's, there's some people out there doing really good work for you. There's no answer. It's Yeah, it's obviously we're not talking about benefit managers, and right, the politics and the insurance and all that stuff. And there's all these things that are artificially inflating prices so that everybody can get their piece of this money, which I you know, I think Moreover, so what's going on? But it's just, it's a strange thing. And it's interesting that you've got to see it all the way through because you actually have a memory of like, Oh, this is $5 or $25. And that was $400. Yeah. And I looked while you were talking, the median income in America has only gone up $6,000 from 95. Until now, there you go. Right. Yeah. So yeah, it definitely it's not like it's not like back in 95. Everybody was making $54,000 yours, a household, another making 3 million, and their insurance, more expensive or whatever. It's both Well, anyway, I'm so sorry. I don't know how we got all the way down this row.

Allyson Hughes, PhD 23:36
No, I just like one. One final thing is like, I think when it comes to co pays to like, you know, because of course my co pays have changed from the type of insurance and of course the price of insulin going up. But either way that, that I think right now I pay 80 bucks for three months of insulin. So like that 80 bucks could be like, I don't know, somewhat nice dinner in the Boston area for me and my husband, you know, and so I'd rather obviously spend it on that or, you know, some anything else really been a copay? You know,

Scott Benner 24:07
it's because it's medical. Like, yeah, like you and me. Yeah, there's a real feeling like, wow, like, my life shouldn't cost me money like that. Exactly. It should be exactly my dinner with it or whatever. Yeah, I hear you. Okay. Well, why did you come on the podcast? I forget.

Allyson Hughes, PhD 24:23
Ah, honestly, maybe I forget to I just thought it would be. I really liked the podcast, like I'm a big fan. And I just one day, be on the podcast and talk to you. So here we are. Let's dig

Scott Benner 24:34
in. Are you one of those kids who grew up around doctors and thought I'd like to help people like me?

Allyson Hughes, PhD 24:41
Oh, yeah, I did. Um, I kind of went through this whole thing where I was like, you know, I've really wanted to help people with diabetes. And first I was like, Oh, I should go into health care. And, you know, from some perspective, maybe as a nurse You know, kind of go through that whole thing. And then I was like, You know what, I really tried nursing and I really hated it, to be honest. Like, it just wasn't. I just, you know, it's I, you know, I know love nurses, I think they're fantastic. I don't, I just, it just didn't make me happy. Like, I've always been a person where I'm like, whatever I'm dedicating, you know, any hours of my day to I want it to bring me joy, and it just didn't bring me joy. So then I was like, Okay, I'm gonna go ahead and try a few other things. And in the middle of that, I took a bunch of psychology courses as an undergrad, and I loved it. And so that just led to like, a Bachelor's in psychology, where I started doing like, grant funded research, and then a clinical psychology Master's. And then I didn't stop there, because that would make sense. I just was like, I'm gonna keep going. Yes. PhD in health psychology last year. So yeah, I just was like, I'm gonna go, I'm gonna go for it. And it was really, I just, I really fell in love with like, data, and not only my own data, but just like, being able to harness other people's data, which is why I love tide pool. You know why? You know, we can just use this data that we're already generating to make a big difference. Um, yeah.

Scott Benner 26:23
Let me ask you, are you like a school geek? Like if I if there were more degrees, and you didn't have bills, would you just stay in school?

Allyson Hughes, PhD 26:30
Oh, and my husband and I have this agreement where I'm not allowed to get any more degree. He said, he's done with the PhD. He's like, this is it? This has to be done.

Scott Benner 26:42
Looks like it. Let's do what you'll do after you. Maybe ignore him. Okay. Now, if he didn't exist for a second seriously, and there was like, yeah, would you keep going,

Allyson Hughes, PhD 26:53
um, I think I'd probably think about some certifications, like, additional certifications, but I wouldn't get any more degrees. I just, I'm done. My brain is done.

Scott Benner 27:03
My wife, my wife loves being in school.

Allyson Hughes, PhD 27:07
It's so much fun. But at the same time, it's so draining for a while there I was, I was on a very large grant. And part of the grant was teaching like professional development courses. And like, I had a stats boot camp I taught, it was awful, where it was just like, and these pork this poor students, but come straight out of high school, and then it's like that Monday, following graduation, they had a week long boot camp with me learning statistics. And you know, so I, it was it was intense. And so like, you do that, and then you're supposed to be doing your coursework and your research and having a life. I mean, it's a very draining experience.

Scott Benner 27:50
My son is so good at math, and freaks me out, because he's also not a person who enjoys being a student. He's interesting. He's a blend of my wife and I, he's really good at being a student and doesn't like it. So I didn't like it. And she was good at it. But he's taking some time, what's the degree he said, He's, he's like, I'm gonna declare this year. And I'm like, all right. And I'm like, what do you what do you what do you think? And he goes, quantitative economics. Oh, wow. I was like, what does that mean? I say, you know what, never mind. I'll just keep sending the checks. You go ahead and take the quantitative economics course. But he's like one of those people, like you put math in front of them, and he's getting real joy out of it. But he just, he's good at it. And I so I think it's interesting to watch because I had to work so hard, like understanding everything I never enjoyed, like you just spoke about going to school, you said it was so much fun. I didn't have so much fun at school once. Maybe Maybe once I saw three things at school, that that delighted me over 12 years, and one of them was a girl fight. Oh, wasn't anything academic. It's funny, not to go too far off the rails. But I think there we were. We were out the other night with my daughter and a bunch of her friends and they said all they saw these girls get into a fight. And they just scribe It was like, You call that fight was like a world done to you people. One day after a long day of high school, I was sitting on the bus, exhausted in my face, plastered against the dirty window hoping to get 20 minutes of sleep on the way home before I had to go to work. You know, I hear all this screaming and yelling and I look out the window is a beautiful piece of grass around the bus. That's all really old, hundreds of year old trees like you know, you couldn't get your arms even halfway around them. And I look installa one girl with a handful of other girls here bashing her face off of the tree. And I was like and that's how people fought in the 80s. So I just like they're like, somebody slaps somebody in it. Everybody got really upset and they stopped and I was like, Oh, you guys would not have made it when I was growing up. Someone would have murdered you. But it was just anyway. So you are doing are you? So I guess let's ask like, are you? This is interesting because you said you had a grant for a while. And it's interesting to get somebody to kind of like bankroll you while you're doing stuff. Right until you get a job. Yeah, sort of the idea.

Allyson Hughes, PhD 30:21
Yeah. So yeah, basically, like what happens is like, in grad school, like, you'll have like a mentor who's often like an assistant professor or a tenured professor who's really like put their time in and they already have a grant, were there only one person, so they need to hire like students to carry some of the workload. And so that's what happens is a lot of people end up working part time or full time under grants. And that's just, that's how you pay the bills. You know, I mean, they don't pay that much. I'll tell you, it's laughable how much you get paid in most grad programs. But it's, I mean, it's still, it's still money, so it works out.

Scott Benner 31:06
Take a pause here for a second. I'm gonna do our lunch Bolus weather. Yeah, go for it. blood sugar. 70. I've asked her if she's hungry. She says don't want the sandwich. I say okay. So we are going to Bolus hold on a second what's in there, there's a pepper, and ranch dressing. Grapes. Let's call that 15. Chips. Let's go 30. I remember to cookies. I don't know how many carbs are in those. So now we're up to 45. And let's call the whole thing. 55 carbs. 20 carbs. This might not make sense for a second two hours. And what I say 55. Thank you. 35.

All right. Yeah, yes. All right. Come on, I can't really describe why I did that yet. But 2020 carbs, two hours, and 35 carbs over three hours. And I'm sorry, if I'm not able to explain that. But maybe by the time I edit this and put it out, I will be able to explain it. And then I'll just pause here and future Scott will come in and explain it to you. Hey, present day Scott here. Arden is using the loop, which is a DIY closed loop system. And I was spacing out her boluses to keep bazel insulin on. Now that's even changed since then, when this was recorded, we used a version of the loop algorithm that would kind of take too much bazel away for us during boluses. And so I would pick different absorption times telling the loop that some carbs would have an impact over two hours, while some carbs would have an impact over three hours, which would keep it it kind of folded into keeping her bazelon a little longer. The newest version of the loop, I don't have to do that as much, I usually just pick about three hours, three to four hours for the food, and it kind of keeps up on its own. If you're interested in finding out more, just go to Juicebox podcast.com to get a list of algorithm based episodes. So as you scroll down, what you'll see first is recent episodes. And then you'll see a little banner for diabetes pro tip.com. You'll see the sponsors. then underneath that algorithm pumping, that's a grouping of podcasts that are just about Arden's loop experience and other people's loop experiences. If you keep scrolling, you'll find the defining diabetes series adult topics for after dark. It's really kind of nice to check out the website sometime. I put a little bit of effort into it. I mean, I'm not like you know, I don't know JavaScript or anything like that, but I do okay. All right. Let's get back to the conversation. Anyway, Arden's getting 55 carbs for her lunch. And I and I wait a minute. I didn't send a sandwich.

Unknown Speaker 34:10
I sent

Scott Benner 34:14
sporky I sent a bit

Unknown Speaker 34:17
right. She didn't open the bag. No lunch.

Scott Benner 34:21
No, please. Are you kidding? She's still. She's still in class.

Allyson Hughes, PhD 34:24
Okay, okay. Wait a second. It's early. I was like, Okay, that makes more sense.

Scott Benner 34:30
Yeah, we, um, we we bolus like ninjas. She's probably like in in math right now. Uh huh. So I'll have a little that's not a help. Helpful statement at all. Is it? Um, okay, so Okay. Go with Bolus cheese. Wow, it's fine. It took a couple of seconds rollover. But now she's typing something yesterday was daughter's day you see on Facebook, everybody was their daughter's. Yep. By the end of the night I was sending art in the worst photos I had of her I was texting her my Can I put this up on Facebook, like her face, her eyes are closed, or it looks like she got punched in the mouth like it's up in between picture. She's like, No, no, I'm like, I really want a bad picture of you to put up on Facebook. So she's like, you can use these. We negotiated for hours. And we finally came, we settled on one silly picture, which wasn't really that silly. She had passed out on a countertop doing her homework, and I took it. And then two photos that she thought she looked terrific. And wow, I put them on my Facebook and I said, I don't know why the Russians want all of these pictures of our daughters. But here's ours.

Unknown Speaker 35:45
Amazing.

Scott Benner 35:47
And then she just passed out in one of the photos and my wife's like people have texted me this morning. Is she mad about that? I'm like, No, no, she picked that one. There are far, far worse options.

Unknown Speaker 35:56
But there's always worse. Yeah, obviously.

Scott Benner 35:58
Okay, so you are doing so sorry. This one's This one's bipolar this episode. But so this one is to you're doing. Who do you work for right now? You have a job now, right?

Allyson Hughes, PhD 36:11
Yeah, yeah, I have a job. So I work for the TMD exchange. And I've been here I've been working for the company for I think about 16 months. I worked remotely while completing my dissertation in Texas and then made the move here. And

Scott Benner 36:31
how are the winters in Boston compared to Texas?

Allyson Hughes, PhD 36:34
I was told this last one was a mild one. But at one point it was negative 15 I mean, like I had to buy my dog sweaters. It's very I had to buy a coat just to come interview here. I didn't have a coat Scott like I didn't have I didn't have anything winter ready. And so when I came to interview here, I had to go to like Burlington Coat Factory in Texas and I found a giant coat on clearance and you know, packed it in my bag because it was like 20 degrees here at the time and I

Scott Benner 37:08
have a jacket I have never worn I took my son to see a school in Vermont in January yes so Exactly. ended up going to but I do on the jacket so I it's off putting the Boston's too close to the ocean. That's what yeah, that's what's wrong with it.

Allyson Hughes, PhD 37:26
Yeah, yeah, we just have like tourist season, which was a nightmare. It was just so many people. I'm not a big fan of you know, crowded transportation and and just like, you know, just you have no room on the sidewalk. I'm like, I'm just trying to walk to work. Please move, you know, is the thing.

Scott Benner 37:45
Stop looking for Fenway Park and get up? Yeah,

Allyson Hughes, PhD 37:48
yes, exactly. You're going the wrong direction. Get out of here.

Scott Benner 37:52
become quite a little healthcare pharma hub? Oh, yes. number of years there's they're poaching farm of people out of New Jersey pretty soon. We're just we're New Jersey is gonna lose its pharma capital of the world status. Oh, my God. Yeah. So you can have it? It's fun. Yeah. What do you do for a tea Wendy exchange.

Allyson Hughes, PhD 38:13
So I'm a research scientist. So that means anything from, like I said, collaborating on projects with companies like Eli Lilly with their researchers to doing like internally funded projects through the company. So sometimes, I'm just writing all day like today, once we're done here, I'm just going to be writing the rest of the day manuscripts with writing up our data to get it out so clinicians can read it, and people with diabetes can read it. Other times, it's it's a lot of project management, just like, you know, making sure everything's running smoothly. We have a longitudinal project right now with the new york marathon runners from the beyond type one team. And so we're getting their CGM data, we're getting like monthly surveys sold out by them. And so it's just it's a lot of moving parts that you have to always keep an eye on and make sure everything's running smoothly. So

Scott Benner 39:09
two things you would do, my wife would love each other, because her technical writing is so good. And she can explain really complicated things in really proper ways where my writing is more flowery and things like that. And too, that's why you love the podcast, isn't it? Yeah, yeah. Yeah. Because of how I talk about diabetes.

Allyson Hughes, PhD 39:30
I like that's like a major, a major part of it, like I, you know, with my psych background, and of course, my diabetes background. It's just like I love hearing about the experience of other people like someone who was diagnosed in the same year as me and maybe was even on the same devices is going to have a completely different time, a completely different outcome. And I just think that's so fascinating. That's that's part of why I got involved like I just, you know, I want to improve quality of life. I want to impact the devices that are coming out. And, you know, I just I think I'm in a really good position to be doing that. That's cool.

Scott Benner 40:07
Do you agree or disagree with me when I say that diabetes really isn't that variable between person to person?

Allyson Hughes, PhD 40:15
I think part of it's just really a mindset. I know so many people with diabetes now at this point where it's like, you know, I know genuinely like, what work my my cousin got diagnosed two years ago. And so he's nine. And so I know what works for him, definitely does not work for me, and vice versa. And so I think it's all the like, the lifestyle variable surrounding it. I'm really not answering your question, Scott. I'm kind of like,

Scott Benner 40:46
my secondary backup question. And I have a joke about your I have a joke about your cousin taking your thing in the family. So I'm going either direction when you're done.

Allyson Hughes, PhD 40:55
But like, it's, you know, it's the lifestyle factors. And so I really see it as you know, it's, it's the mindset, it's, some days with diabetes are gonna be awful. You know, where you're sick, and you're just like, Oh, god, what do I do now? I haven't been sick for a year, like anytime I get sick. It's always been a year since the last time I'm like, Oh, I don't I don't remember what how much insulin Do I need to take? You know, and just kind of winging it. So okay, I'm reading for your

Unknown Speaker 41:21
follow up question. If

Scott Benner 41:22
I scrub if I scrub the humanity out of my question, right. Ah, and, and just take it down to using insulin properly in all of those varied situations. There are, it's hard to say right, but there are a lot of right and wrong decisions in every mode. Yeah. And some people make the right decisions. And some people don't and some people get lucky. And some people, you know, No, you don't. I'm saying like there is not so what i what i brusque at, is it brusque? I don't know, I should not do it. I don't know I should, with the dumb words that I'm good with. But I'm brusque. I will look. Yeah, you really, thank you. Yeah, we're gonna go with brass for now. But what I what makes me upset is when somebody says, you know, oh, I ate this in my blood sugar shot up, but there's nothing you can do about it. And I think Well, no, there is there is something you could have done. Exactly. not know what that something is, which is fine. Yeah. But but it doesn't, it doesn't not exist. And yeah, and that part makes me upset because then it puts expectations in people's minds. That a 300 blood sugar, for example, is something that has to happen, it has to happen, because that's just diabetes. And that's the power of your podcast is like, you're doing what I'm doing just on a different level where it's, it's about science communication for me. And for you, it's more health communication, and you're giving people techniques. And so whether they're burnout or not, you know, you can move some of those factors, like, it doesn't matter where they're coming from, like they're hearing those techniques, and they can employ them if they want to, because I wonder about burnout, like the idea of being burned out on something. Yeah. Diabetes on anything, right. So like, I wonder if me maker make a broad statement. Okay. I can't believe I just said broad statement. And then the example that popped into my head was if the perfect woman to me showed up and wanted to have sex with me every day, and I would I burn out on that eventually. And then there's the part of me thinks, no, how would that happen? And then there's another part of me that thinks, well, but somebody divorced Farrah Fawcett majors in the 70s. And so like, right, so yeah, somebody got sick of her Jennifer Aniston is really cute. And guys leave her constantly. So like, like, so maybe, and vice versa. By the way, I think Angelina Jolie, like put Brad Pitt in a tin can and kicked him out of her house. And I'm straight as an arrow. And I at least hold Brad Pitt's hand and see what he had to offer. Like, you know what I mean? Like you're really handsome man. So I guess you can burn out on anything, but at the same time, do you burn out faster when there's things in the background that are making it difficult or always fighting? And she like me? Maybe Brad's a jackass, right? And so Angelina just couldn't take it anymore. Or maybe she was just really tired because she's so thin and she has um, a lot of energy. I don't know what it is. But but like so. But like, so there are other things that make it worse, like, like the what, but when the wheels are greased? How come some people don't burn out? Do you know what I mean? Like is that is that their psychology is the way their brains build? Is that their outlook? Is it a little conglomeration of all that, or did they just make all the right decisions, so they never bumped into the problems and without the problems? It was a pain in the ass, but it wasn't. It wasn't enough to grind them to a halt and make them Oh, yeah, I find all that fascinating.

Unknown Speaker 44:46
Yeah, I do too. Yeah,

Scott Benner 44:48
I really do. Like Yeah, how do you we said the same thing I should say. kinks. But I would love to so it's my best guess because I do not have it in need to go to 19 different colleges and can, you know, get degrees and do dissertations and things like that? It's easier for me to just narcissistically believe that I've come up with an answer and blurt it out. And then hopefully it helps most people that it runs into. I don't want to make you feel bad about all the school you went to you probably could have just done this tomorrow. But can you imagine? Like, it turns out, I could have gotten a podcast. No waste of my life. I don't think that I think you're I think what you're doing is amazing.

Unknown Speaker 45:29
But save me a lot of money. But um, yeah,

Scott Benner 45:32
yeah, no kidding. You would have had to buy a microphone. It's expensive. So. But, but so it's my my inclination is, the earlier you pick up the information, the less likely you are to have something grinds to a halt. Like, I just see it too often. Now. I can use examples from literally from yesterday and today because I now have so much contact with people with diabetes that I am never without a brand new observation. Yesterday, I spoke to a mom of a newly newly diagnosed child who found the podcast right away. And contacted me privately to say she's having a real problem. And she needed to speak with me. And I was like, Well, I do have laundry to fold today. So I can talk to you on the phone while I'm folding laundry. So she calls me and the irony, of course is that she's got the kids a one seat down to like 6.1. But she really wants it to be more like 5.60. See this graph here, this horrible problem here? I looked at it. I was like I said, this is the nicest graph I've ever seen in my life. Like great. Like, we're like, what are you upset about you? What do you see here where it went down to 68 for 15 minutes, and it came out? Oh my gosh, no, but but she wasn't crazy. She was just so far ahead. So soon, she was down to the fine tuning stuff already.

Unknown Speaker 46:51
Uh huh. Uh huh.

Scott Benner 46:52
Right. And I thought, oh my gosh. I didn't think it like this. But I thought because everyone's gonna take this wrong. But I thought, wow, the podcast got to her. And she's gonna skip over all the stuff. Like, we're all the bait, like, she's not gonna cry in the shower like I did. She'll get the cry in the shower for reasons other people cry in the shower. Not because they think they're gonna kill their kid with insulin. She'll get the cry in the shower, because she hates the guy she married or doesn't like her car, or whatever other people cry about, because the guy who won big brother shouldn't have won like that stuff we should be crying about, you know what I mean? Like, this is so cool. She's fast forwarded. And she's not the first person I've spoken to nearly this has happened to at the at the same time. I saw online this morning and interacted with people who are blaming their insulin pump for their blood, their blood sugar's Oh, and when you look at what happened, they went from MDI, to an insulin pump. And they don't have their insulin setup correctly in their pump. Mm hmm. And they leaped over the idea. All the things that make sense about what could be going wrong, and they just like this pump doesn't work. Uh huh. And I thought, Oh, my gosh, it's what the barrister said in the episode, like last year, when he said, Some people put a pencil in their pocket guy puts on his pocket, robs a bank. And some people look and say pencils, cause bank robbery. And then factly just saw what was like blatantly right in front of them. So I went back in and I said, Look, I'd love to explain this to you right now. But uh, here's an episode of the podcast you can listen to, it'll explain the whole thing. I have to go record with Allie. And, and I thought this will help them. And how do you? How do you get to people so that they have the information they need earlier? And because this is now my sticking point, we have now turned your episode into my episode? Because?

Allyson Hughes, PhD 48:47
Because I can just interview it's fine. Well, well, so my,

Scott Benner 48:51
my, the problem I'm having right now, Allie, is that I know what this podcast does. I know how it works. And I am slowly infiltrating the adult world with it, I guess is the best way to say like, yeah, I tried really hard to get through to a D and tell them how important it was. And they kind of listened to me for a little bit and then didn't, and I think we'll do I have to go to AD myself and set and do I have to pay for a stand and stand and talk to doctors and tell them this. But what happens is like maybe that's what I have to do. I have a children's hospital who's considering having me up to train their staff on how I talk to people about diabetes, that would be a big leap for me. But I can't I come almost 48 You know, I'm saying like my dumb jokes, people are gonna get sick of eventually, and I'm going to run out of things about diabetes to talk about probably the next few years. And so how do I how do I keep helping people? were more importantly, how do you get to them so they don't need this podcast anymore?

Allyson Hughes, PhD 49:58
Yeah, I think I think that's a major problem with with the devices with, you know, the other existing education that's out there is like, the people that, you know, we need to engage with whether it's as clinicians, as researchers, as a speakers, you know what, whatever hat you're wearing, it's like, those are not the people that are coming to AD. And those are not the people that are even getting online to go into the fold with insolent Facebook group, it's like, those are just people that it's just really hard to even make a connection with, because you have to really be face to face with them. And so that's something I struggle with, with my research. And with what I do as well, it's like, how can I get this message out properly? How can I have the most meaningful impact? It's like, I have a lot to say, and I want to tell everyone about these findings. But it's like, you know, I recently had a paper published where I was talking about research that I had showing how detrimental it is, for people on Medicare to be using insulin pumps, because the Medicare policies are just really delaying them getting their sites on time, and they end up in the doctor's office very, very often to get forms filled out, it's a pain for the doc, it's a pain for the person. And I was like, I am like, do I have to go to CMS headquarters? You know, do I have to go to DC, wherever they're located, and just deliver this to them? Like, I feel the same with him with my research. It's like, how can we get the message out there? And what's best practice? And of course, best use for your time, Scott, as used for my time. It's like, I think that's always the struggle. And I don't think there's a good answer. I wish I had that answer. I think maybe you and I would be millionaires, then if we could figure out the best way to market. You know, what we do and, and your message with Arden and your podcasts, because people out there like, there are some that just will continue to be like, this is diabetes at or this is my pumps problem, or this is an insulin problem. And I I just they just don't want to tweak what they're doing. You know,

Scott Benner 52:01
I do see that. You know, when I go speak somewhere, it's interesting, because, and I, you know, stand in front of 300 400 500 600 people, and some people hear it right away. And they're like, oh, my god, yes. Right, because they're in the right spot. So they're ready to hear it. And and those are the people you get a note from two weeks later, who started talking about like, my clarity report says my agency's dropping like a point and a half like those think they heard it, it made sense when they brushed on some people, I'm assuming it goes right over their head. And that never comes back to them. But I see a lot of people who come back around, and you hear from them six months later, like I heard you speak somewhere in November, and you're like, wow, summer now you know. And it's making sense. I started listening to podcasts and look what's happening to me. So I think if you can speak to them, it can make sense. But what happens to the people who get all that sort of scared information up front? And then they hear the right thing once they think that's the wrong thing. You know, do you mean Yeah, and so on. And so that means you have to reach the doctors. And I'm going to do something here I don't normally do. I'm going to tell a story from I, there's a private Facebook group for Juicebox Podcast listeners where people talk and it's like 1000 people in there now. So woman told a story today, I'm actually going to have her daughter on the show, because her 16 year old daughter went to their appointment with this insane a one say it's like 5.6 or something like that. And the doctor doctor just comes into the room and begins to admonish her over her below. She's having a and so the girls like, like in her mind thinking. I don't know what he's talking about. I don't have lows. Mm hmm. He's actually just saw the ANC number and began to yell at her over it not using canned responses that he expected from the ANC number. And so he starts opening up a reports and then slowly, it hits him. And then he looks up doesn't apologize, but says you're not low. How are you doing this? Yeah, so she starts telling him about bumping and nudging and Pre-Bolus Singh and the Juicebox Podcast and explains this whole thing to him and hidden his, you know, to his credit, and we'll hear her story at some point really longer. I'm gonna be up before yours, so I can kind of talk about Okay, is that um, he said, okay, explain this to me, and then said, Hey, with your next appointment, you're supposed to see this, you know, the practitioner next time, but you come back to me, I want you to do that. Also, would you be considered helping other people in the practice? We have a mentor program, like this guy saw it right away. Wow. Right. But But will he walked into the next room and say 15 carbs. 15 minutes to somebody? Right, right. Right. Right. Right. Because I think you will. I think he's happy that it worked out for that girl but still believes that it won't work for most people, where what I'm seeing is, it actually just works for anybody who hears the word Information and once it? Uh huh. Right. So, I don't know, I think what you're doing is so cool. And at the same time, I can see the sadness in it. Like, I feel like, like, what do you do when you have that information? When you can say to the Medicare Look, if you just made these changes to your system, you'd make people so much healthier? Yeah. Yeah, I think just drink. I mean, how do you hear?

Allyson Hughes, PhD 55:22
Um, honestly, you know, having a glass of wine now, and again, definitely helps. Um, but, you know, it's, it's really, I have a great support system at work. My team is fantastic. You know, I really believe in just like, work life balance. I've just been like, okay, I, I can't, I can't focus on this all the time. You know, I can't always be charging around trying to, you know, improve, you know, oh, my God, government policy, you know, I have to take a step back and catch my breath. And, and, you know, right now that specific papers been out since like, March, and I'm at the point where I'm, like, you know, how can I keep promoting that paper? And is it time to, you know, I've put it down for a couple months, and I'm like, maybe it's time to pick it up again, and start pushing a little harder with it. You know, it's really about balance and really taking care of your own mental health. Because, you know, I can't I can't just be on call all the time to to try to fix these problems. Do you

Scott Benner 56:20
own it? Because my SEO on my blog is really strong. I'll put it up for if you want to see when people Google Medicare and insulin pumps, they'll get they'll end up on my my site if they do it. Yeah, yeah, I'm not lying. My SEO is like, I'm, like Jedi level. That's awesome. And you don't know why it is. Why? Because the listener of this podcast, who reached out to me once and said, I think you saved my life. I don't know how to do something for you. But if you give me the keys to your website, an SEO person, I can turn it up.

Unknown Speaker 56:52
Oh, wow. That's amazing. He said,

Scott Benner 56:54
Sure. Here's my password. It's not also my Mac card pin, I promise. And it's, but

Allyson Hughes, PhD 57:02
here's my social Yeah.

Scott Benner 57:04
They were like this. I'm sorry. I can't do more for you that she said in here. And she, she judged up my my website for me. All the all the graphics that you see me using now that are all nicer and everything. Yeah, it's from the mom of a 16 year old boy who's a graphic designer who wanted to find a way to give back to the podcast.

Unknown Speaker 57:21
That's amazing. So

Scott Benner 57:22
what we need is somebody who works in the government who can take your gun and walk it up to somebody and say, and by the way, at this point, I believe someone listening has that power. So

Unknown Speaker 57:31
Oh, I'm sure

Scott Benner 57:32
it's a it's that because that sort of thing is insane. Like that's just process like just changing process. And people's lives just genuinely get easier. And you know, it's no one's fault. When they set it up. Initially, they started with whatever the rules were at the time, and they built onto them the best they could. And this is the mess that it came to. Yeah, I mean, it's Yeah, you just need somebody to scrub it clean and start over again.

Allyson Hughes, PhD 57:58
Yeah, yeah, exactly. It's totally best of intentions. And on paper, it looks fine. But when you think about just everything that it that it impacts, it's just it's not worth it. So it definitely needs to be overhauled.

Scott Benner 58:12
Do you offer a fix? In the paper?

Allyson Hughes, PhD 58:15
I kind of dance around that a little bit. I gave a few suggestions. But if you want I can I can send the paper to you. And I'd love to get your opinion on it. And

Scott Benner 58:27
I would love to have my wife read it and explain it to me. Yeah.

Allyson Hughes, PhD 58:33
I can just imagine that like storytime at your house.

Scott Benner 58:36
This is this is the kind of stuff like I'm like, Hey, could you read this and it should like sit down for 15 minutes and explain the whole thing to me. She She hates her job is I watch her read things. As she's reading them. I'm like, Oh my god, this is why you're good at your job. And she's like, why I'm like, because who else would want to do this? There's other people who could be good if they're just smart enough not to do this for a living I think like like this massive amounts of information that I see her take in. And then she has to make sense of it and clarify it for people. Yeah. And it's very, it's very cool that she can do it. Trust me, all of you who use medication or devices or anything like that in the world. You want a lot more people like my wife and like Allie out there fighting for you. It's a It's not easy what they do. Do you have a couple minutes to stick with me? I know we were only supposed to go to 11. But yeah, of course I've got time because I I'm not even sure what we did for the first 20 minutes. So

Allyson Hughes, PhD 59:30
I think we were just chit chatting. And then I was like, Oh my god, we're recording.

Scott Benner 59:36
That's it. That's the goal. That's why people are hired this great conversation with this girl named Allie today on the Juicebox Podcast. It's like she didn't know she was being recorded for a while so it's fine.

Unknown Speaker 59:46
Oh, Daddy. Yeah, I do. I'm ready. Now. I might

Scott Benner 59:50
even leave in the part about your road rage and the driving and everything.

Unknown Speaker 59:53
Oh, geez. That's fine. I don't care.

Unknown Speaker 59:57
I have no shame. There was a moment

Scott Benner 59:59
there was A moment when I was like, I wonder if I could get her to admit she doesn't like her husband or something like now let that go. I'll tell you what I, one of the questions to get into the private group is, what's your favorite episode? And people are varied in what they respond, but so many people love when that one girl through her family under the bus. Oh, yeah. We're just like, I love when that girl was like, I'm the favorite. That has nothing to do with diabetes, like I know. But isn't it great? The way she did it? She was just like, I know, my siblings aren't my parents favorite? I was like, This is great. Anyway,

Allyson Hughes, PhD 1:00:33
and that's why the podcast is great is because and that's why you're great is because you can get people to really open up and, and she says something that maybe she wouldn't tell anybody else, you know, but like, she just, she was real. And I think that's why this is so valuable, is it's real people. I honestly think it's

Scott Benner 1:00:53
one of my only, like, pure superpowers is that people get incredibly comfortable around me for some reason and start up, they absolutely shouldn't say, so I caused a major fight between my mother and father in law one Christmas night. Oh, my God, it wasn't my fault. I was just talking about how I felt about the holidays. And I started so long ago, it doesn't matter, and they're not gonna listen to us. And so I it was Christmas night at Christmas was over. And I had like a young son and I was in my, like, maybe early 30 ish, like, and I said to my father in law at the end of the night. You know, I hate to say it, but Christmas just didn't feel magical to me this year. I'm like, I guess this is just what happens, you know, as you get older, and I felt like I was going through the motions of Christmas. And he started talking about how he felt, which is not very common in my wife's family. And it got to something that I think rubbed my mother in law the wrong way. And then they started arguing, and I stepped back and I was like, they're having a private moment. My wife looked at me, he's like, Can we just walk out in the middle of this? And I was like, I don't know. And when it ended, and he got pinned down by his wife and didn't know how to answer, he blamed me. Like, he turned to me. And he's like, this is your fault. I'm like, Yo, I just said how I felt about Christmas. And he's like, well, I don't like and you could see on his face he was like, I don't know why I started saying that. And I thought I know I man cuz you got trapped by my soup. You opened up, only doesn't work on my wife works on everyone else in the world. But I do. I listen, I don't want to get I was about to say I don't want to give the secret away. Because I like doing this podcast. I don't want somebody to do it better than me. But no one's gonna do it better than me. So I can just say what I want to say. I think that this can't be school. Right? It has to be not because Nope, there aren't enough people like you who are just like, please tell me more things. I don't know. Like, like, you know, like, most people are just like a medicine. I hate Yeah. It's what it tastes like. Right? So, you know, some people are like, I don't understand why the podcast episodes. You know, I always joke about I don't name them anything. But the truth is, I don't name them anything, because they're about so much. Yeah. And if I pigeonhole an episode within title, and somebody comes along, as Oh, I already understand that they're gonna miss out on the other things that happen in that episode. Exactly. So now, you all know for 300 episodes, I've been joking and saying, I just make up silly names. But the truth is, I want you to listen to the episode because I know what's in it.

Allyson Hughes, PhD 1:03:28
Yeah, right. It works. Obviously, I also

Scott Benner 1:03:31
do a thing where I trick you into listening to the end by picking something that said towards the end of the episode to put in the title so that you'll listen to find out what it is. I'm a diabolical podcast, maniacal genius. No place. But But the truth is, and I'm not kidding, is that I think that even your episode right now, which as we're recording, it feels like a dumpster fire that's not about anything isn't. Right, right? Because it feels like we were like kinetically going all over the place.

Unknown Speaker 1:03:59
I know,

Scott Benner 1:04:00
there's so much in here. And if I pick what I think is the main focus of what you said, like imagine if I said, magic, the title of this episode is Allie thinks Medicare could be reformed for users, you know, who would listen to it? Maybe, maybe not even you, right? Like, you might be like, boring not doing that.

Allyson Hughes, PhD 1:04:22
No, just name it dumpster fire, and that will just make my life that would be hysterical. And people will listen because they're like, oh, I'll use a dumpster.

Scott Benner 1:04:32
dumpster fire. Very possibly could be the episode title. I was gonna say Ellie had road rage. But you admitted to that too early in the episode, so it might not keep people's attention the entire time.

Allyson Hughes, PhD 1:04:42
Yeah, we can't give all the secrets away right away. I've given them all away. Now. By

Scott Benner 1:04:45
the way. Let me just say this alley. I've never said this out loud, but I'm in the right mood for it today. All of you who have a podcast who keep ripping my ideas off you keep going. I have better ideas six months ahead of when you're ripping me I'll change this whole format before you can even Fs rip off what I'm doing. So go ahead and try, go get your broke ass CD and to talk about insulin ain't gonna be as good as Jenny Smith. And I already did it. So suck it. There. That's, that's gonna be one big beep when the podcast comes out just so you know. Yeah,

Unknown Speaker 1:05:19
but that's it.

Scott Benner 1:05:20
alley. Now you. You are the only one who knows how I feel about that.

Unknown Speaker 1:05:25
I can appreciate that. I come

Scott Benner 1:05:27
up with this thing. I help people with it and someone else comes along goes, Hey, that guy's getting ads on his podcast. Let's take what he's doing and do it here. And by the way, time honored tradition and blogging, ripping people off and everything I get it, but have your own idea. Like and be to be again to go back and forth between humor and seriousness. Maybe your idea would be better than mine. And or maybe it would be different and you could help a different group of people. Like stop just taking what I do and doing it again. That doesn't help. Like that doesn't help anybody. I do this podcast to help people I know that probably is hard to believe because I probably seem like an idiot to most people or at least a jackass, right? I only do this because I don't want people to feel the way I felt like I that that to me, it's not necessary. And it impacts your life poorly in ways you don't even think about. And I don't think you should have to feel like that. And if there's a way not to, I would like you to know it. And so I'm doing it the best way I can do but when you come along and go I have a podcast too. And I wish more people listened to it. Like they listen to his I'll just do what he's doing or steal his guests or whatever else you think is going to help you. I've already done it. Like they don't do you know what I mean? Like like like like, what the other day like this stand up special. Dave Chappelle stand up special came out? Yeah, I watched it. If you go do Dave Chappelle stand up special. And rerecord every word of it. I don't need to watch yours. I already saw it done. Go. But you might have brilliance and you go find it. I hate that. It's not that they rip me. It's nice that they think the podcast is good. And I know I mean, like people will come back and be like, oh, flattery form of compliment like, whatever. Just, I work hard at this. Have your own goddamn idea. That's all I'm saying alley. I don't know. Let's

Allyson Hughes, PhD 1:07:14
call it let's just call it Scott's podcast rage and like that what it just like Don't even mention that I'm in the episode just like this is just

Scott Benner 1:07:24
like this girl's talking about Medicare. I'd never even heard though, Scott. I know. I don't know what happened. And I'm not even you know what the truth is? I'm not even. I'm not even upset. Like I'm trying. Yeah, I'm even just trying to be entertaining here. And upset in the way you think of like the listener. The way they might define my anger is not how I feel the way I feel it is as disappointment. Yeah, no, you know, like, I really wish you have this voice. You have found a an audience. And if your audience is different than mine, don't give them what I'm doing. Give them what you're doing. And by the way, if you think you're just trying to steal my audience, I don't think that works. Like do you mean like blackish has an audience you can't you can't go get a different black family and think, oh, I'll steal blackish his audience is too late. People are in for blackish they're you know, they're they're bought and sold. Now they're, they're ready for it. You're not going to steal one of my podcast listeners by having on somebody who I've already interviewed. Like, doesn't that make sense? Like why would I look at your podcast and go oh, you have on that person Scott head on? I've already heard that person on Scott. So why would I What do you think the person has something new to say? They don't. Ollie has said 19 things on this podcast. She could never say to another person. And Allie tell people why that is.

Unknown Speaker 1:08:41
Oh, I what you just said it

Scott Benner 1:08:44
might be helpful for god sakes.

Allyson Hughes, PhD 1:08:48
I can't stop you just have this whole like, diatribe thing that you just did. You just went off on your little manifesto here. And then like, I'm just laughing my face hurts from smiling. Like it's I mean, your

Scott Benner 1:08:59
words for you that now like Allie said what she said because I made her say it. I'm the puppet master. That's if you have Allie on your podcast. It's gonna be some research girl talking about Medicaid. No one's gonna listen. Just Just turn your podcasts off. I want already

Unknown Speaker 1:09:16
let it go. Oh my god. I love

Scott Benner 1:09:19
it. Oh my god. Now Now I can't wait for the review. Scott is an egomaniac. He has an incredible hunger inside of him. One guy said once he said he was adopted that's obviously because he wasn't loved as a child. That one was my favorite one. By the way. Whichever one of you said that. Brilliant. I'll bleep out later. Yeah. Somebody said but by the way, brilliant armchair psychology like right? I LOVE IT guy mentioned he was adopted one time that's where this sickness comes from. Okay. And then the one that hurts is the narcissism one because you you There's gonna be so many beliefs This was but whatever mother's called me narcissistic, okay. You like want to come watch my life for a week and see how much of my free time goes to the idea of other people's health? Yeah, I swear I'm not like I feel like I'm saying now Hey, I make donations to charities, I want you to all know who they are. Because I don't want you to know that. But you call me a narcissist. You come here, you'd apologize. Because I put a ton of who I am into making sure other people are okay. And that and they, when it's over. They say thank you. And I am as uncomfortable with that. Thank you as you could possibly imagine, because I don't even think they should have to say thank you for it. So I just I'm like, no, it's my pleasure. Like, if you ever see me respond to people online, I just put blue hearts on things. People are yours.

Allyson Hughes, PhD 1:10:48
You're so nice online. But

Scott Benner 1:10:51
I'm nice in person. But my point my point is, even when you listen, again, someone will twist this around. But it's weird to have someone tell you that you save their life. Yeah, when you don't feel like you did. Do you know what I mean? So it, it's and it happens a lot. And I try not to become callous to it. I want to feel it from each person, because it's their experience. And the moment it's happening to them. And I don't like imagine if it happened to you. But you were like the 5,000th person, they would send me the thing. And I was like, Yeah, whatever. That's great. Good luck, you know, like, I don't, so I don't want to become so I end up feeling it. So I allow myself to feel it. But then I also feel the people who are struggling. And when I tell you I woke up this morning at 3am to give Arden a little bit of insulin. And I got back to bed and I saw a message just on the screen of my phone. And I knew who it was from it was from one of you listening one of you ruined two hours of my sleep. Okay. And I'm just kidding. I mean, they did. But it's not that I don't want them to feel bad about it. And they and I just I knew the problem they were having. And when I saw their name, I started thinking about how to help them. And then I couldn't go back to sleep. Yeah, because somewhere there's a person with a blood sugar that is way too high and variable and doesn't need to be that way. And I had not figured out a way to say what needed to be said to this person yet. And I know, I know, I can say something to them. Or somebody could say something to them that would help them. So anyway, when that's the life you lead, you know, and then you see online somewhere that someone took your goddamn gas, stealing your makes me upset. Okay, and just for a second because then my narcissism kicks in I go doesn't matter, I'll do it way better than they will. And everybody will just realize that my podcast is better anyway. They're really just helping me. But anyway, there's a moment in there where you're like, You got to be kidding me. Like imagine, you show up at a dance and a dress and three other girls are wearing it. That's what it feels like for a second because they saw it on your Instagram three weeks ago.

Allyson Hughes, PhD 1:12:54
It happens in research, believe it or not, where you'll have a full, you'll have a full research project, you're writing up the manuscript to get published in a very, it can be very difficult to be published. Sometimes it takes people years to get one paper published. And you'll write everything up. And then all of a sudden, you've realized someone's already done your project. And they've already published it.

Scott Benner 1:13:17
Because they knew you were doing and they got ahead of you.

Allyson Hughes, PhD 1:13:20
That can be part of it. That's that can happen at conferences, research conferences. I've been plagiarized before.

Scott Benner 1:13:25
I'm going to tell you right now I know. I know, people whose blogs get ripped off word for word. And it's hard. They put so much effort into them. I was at a thing one time where I thought I was with contemporaries. And everybody was talking about what they were getting ready to do next. And this was like two years ago, and I started talking about my plan to have Jenny on and to break down the the tenants of the podcast. Yeah, Jenny. Yep. And then somebody did it on their podcast first with Oh, and and I just did it better and crushed them. So I can picture your face right now in that room actually took my idea. I can't even use social media anymore to look for guests. Is anyone surprised? Yep. Anyway, reach two will show up on another podcast. Yeah, just have your own idea. It's not that hard. And if it's that hard, you shouldn't be doing it, by the way. Yeah, you know, I mean, but but the world's like this. Like it's not. It's not uncommon, like you just said like, it's in your wallets in everyone's world. Like there's, there are some people who innovate things. And there are some people were like, Oh, I didn't know I can make money doing that. And, I mean, think about that, that shows Shark Tank, right? Where, yes, I'm gonna come on with a great idea. And someone will say, Hey, I love your idea, but I can't invest in it because we're not going to be able to protect it. Someone's going to knock it off. Right? And you're just like, oh, that's that's a thing. Okay. You know, like, that sucks. Like, this guy had this great idea. It's so revolutionary, and now and now someone else is just going to come along and steal it from him. You know, and I'm just so good. I'm sorry.

Allyson Hughes, PhD 1:14:59
No, I was just gonna say I think in the the fields that we're in, like I said, like communication, you know, on some level, we're trying to get the word out there. And I think that's just naturally what you want to do is communicate. Right? And you can even do that because someone could take it.

Scott Benner 1:15:15
Yeah, neither. There's, I've said things on this podcast that were not said on record on the internet prior to me saying it. I know that like you can you can, you can, you know, empirically tell these things. And someone will come along, say it a year later, and then I'll hear from the grapevine like, oh, Scott's got my idea. And I'm, like, Scott said that thing a year before you said it. Wow. Like, are you kidding me. And so they'll even take your idea, and then try to end around you on it and make it seem like it was there. So it's like, just awful in the end, like, if you're helping people just go help them. And I guess in the end, if I'm being serious for a second, the part of me the nice part of me that puts blue hearts up on things that is very thrilled for your success. If someone else, I guess, can take my idea and reach someone that I can't reach with it, and do as good of a job as I'm doing with it, then I'm happy. I'm happy that it's reaching someone else. And I genuinely mean that I can't reach everybody. I'm not a maniacal lunatic. I don't think that everyone with diabetes on the planet should be listening to that. Wait a minute, let me take that back. I'm not a maniacal lunatic period. I probably do think most people with type one diabetes should be listening to this podcast, but I don't imagine that they will. Or that, you know, I'm everyone's cup of tea. There are plenty of people who will listen to me and think, you know, I don't like this guy's delivery. Or, you know, his jokes aren't funny to me, or I hate his voice, whatever. I mean, that's understandable. I'm not for everybody. Nobody's for everybody.

Allyson Hughes, PhD 1:16:41
I mean, the thing is, it's I was gonna say this earlier, when you were, like I said, on your tirade, but I think something to think about his like, even if they reach one additional person, and it's not just, if it's just one additional person, is it worth it, then is it okay? Not really. But it's one person that they're at least making a difference. And even though it's your ideas, I don't know, I'm just that's the way I think about it. You're still having an impact? Yeah.

Scott Benner 1:17:09
Yeah. Great. Well, listen, and I would have to say, I have recently heard someone take something I did and redo it, it would have been nice at the beginning, if they said, you know, where I got this idea from, from Scott on the Juicebox Podcast, and then I would say, okay, that's attribution. that I that I don't I wouldn't have an issue with that. If you said, Look, I heard this idea on another show. And I think it's great. And I want to share it with you guys. To me, that's attribution. And then it's fine. But to say what I say word for word, and then not say where you heard it from, that I don't particularly enjoy.

Allyson Hughes, PhD 1:17:44
I can't believe that it's word for word.

Scott Benner 1:17:46
That's what kills me if it's like an interpretation that this Wow, just there. It's, it's again, it's fine. And maybe that. You know what, let's be liberal for a second, because I just heard you be liberal and say, like, I don't know why I feel that way. I know why you feel that way. You're bleeding heart liberal, like, Oh, yeah. And so it's fine. And so I and I feel that way, too. It would be great if one more person, right? Like I've said it on here before, it's completely inappropriate as a an explanation. But in my mind, when I don't, when I get a note from someone, I think, Oh, God, I wish it was 10 more notes or 100. More notes, not because I want the notes, but because it would mean it would reach more people. When it absolutely feels to me like the last scene of Schindler's List where Oscar Schindler realizes he still has a cufflink that he owns and he could see him think like, if I could have sold this, I could have saved more people. And I know that's not an apples to apples comparison. But I feel that badly. Like is what I'm trying to tell you. Like when I feel it. I feel that badly. I feel like how is it not possible that I can't be better at this podcasting thing to reach more people. So more 16 year old girls are in their endos offices with 5.681, CS schooling, an endo who's been doing it for 30 years. Like, like, I want more people to have that experience. And I don't care how they have it. But then the other problem is, too is how much of what I do here is me. Like, I don't know that I'm not. I can't make that determination. But right. Is it possible that the message without the messenger isn't the same? Like I don't know?

Allyson Hughes, PhD 1:19:25
Why, I mean, you bring such a unique perspective to this, you know, it's, it's gonna be different than hearing it for me for sure.

Scott Benner 1:19:34
I think the one thing that helps is the idea of like, stripping out um, I don't know what the word is, but you have type one diabetes. So there are pressures and anxieties and unpleasantries about diabetes that I don't feel. Yeah, so I can say things in a more nuts and bolts way because I'm not burdened with how I feel about them when they happen. Yeah, if that makes sense, and I think one a person with because you know, the first One of the interesting things that people always assume about the podcast when I, when I talked to them outside of it, where people are talking about like maybe buying an ad or something, and they go, who you just talking to parents of kids, right? And I was like, No, no, not at all. You know, like, there's just as many adults living with type one who listen to this, and somebody said, Well, why would they listened to you? And I said, Well, I mean, at this point, I've got a track record, it works, you know. And so if an adult comes up to another adult and says, Hey, you should try out this podcast, it's going to be weird, because it's going to be a guy who doesn't have type one diabetes, giving you rock solid information about how to take care of your type one diabetes. That's a an endorsement and a half. Yeah, you know, but it is the assumption right away that, that I'm only talking to people who have who are parents, but because I'm a parent, but I don't know like, right. I don't know, like this is turned into a therapy session. Really?

Unknown Speaker 1:20:52
That's fine. I apologize. I'll send you my bill.

Scott Benner 1:20:56
It's fine. You know, what we learned is you're good at making people say things they don't want to say either, because I hold in that stuff about what other people offer me all the time. It did pile up this week, though. It happened three times this week. And on the third time, I was cooking dinner and my wife saw something in front of my face, and I went, why would you show me that? I'm making dinner. And then and then we just I was like, ah, all right. I felt so defeated for a second. I was just like, what am I gonna let him do it? Whatever. You know what I mean? let her rip me off. Just do whatever. It's fine. Like, but it's let me just say this to the people who rip me off.

And ready, ready? Mm hmm. I know. Okay.

Fat farts Never making it the podcast. Yeah, like,

Unknown Speaker 1:21:56
but it might be it might be. It might be interesting to hear. Let me say this to be.

Scott Benner 1:22:01
But yeah, so anyway, Ellie, you now know everything I've never told anyone else. NATO. And they should be wondering right now how I know that. You want to know how I know that. Because the people are giving like you that much. I want just kidding. All this is

Allyson Hughes, PhD 1:22:24
your evil genius. laughs Yeah.

Oh my God, that's amazing. I was gonna say there's like that thing. And like, I mean, take from it what you will with like imitation is the sincerest form of flattery. And it's like, yeah, maybe, you know, but even then it's like they're getting paid to do your work. They

Scott Benner 1:22:42
aren't they aren't. They aren't taking money for a lot of them. Yeah, they're trying. I say it's sometimes out here. And I know it sounds like I'm, I'm, I'm angry. And now at this point, there'd be no way for me to think that I am. But there are a lot of people in the diabetes space who purport to be doing things because they're trying to help people. And yeah, they are just doing it for money. I know a person who does something really well. who wishes to God, they didn't have to do it. They hate doing it. And they only do it for money. Wow. Right? They hate doing it. They don't take any joy in it. They don't. They just they don't care anymore. They don't want to be away from it. And they can't because it pays their bills. Uh huh. So I don't feel like the one thing I always hope people can take from the fact that my wife is in the pharmaceutical industry. And we, you know, we're not, we're not wealthy people, but we are not scraping by Okay, wait, is that I don't, this is nice for me. And it, it definitely helps the money I make helps. But it is not a necessity in our life. I am doing this. This takes a lot of my time and a lot of my effort. And I am not compensated dollar for dollar for my hours. So so you know, as long as I'm here, I care. Because

Allyson Hughes, PhD 1:23:56
Yeah. And it's evident on my end, like I see how much hard work you're doing. Like I see it on Facebook. Like, I see that you're always connected. And I know you're a team of one, you know, like this is all you and and so I think the people that are closer to it and have been listening for a long time. I think they get that and I think they appreciate that. I hope so

Scott Benner 1:24:17
I know people don't there are a lot of people who listen, who don't realize that everything that happens on this podcast is me. Like I don't have another person helping me. But yeah, sometimes I'll get a note and the note is so interesting. It's it's written, it's like, Hi. I don't know if the guy I don't know if the host knows this. And I'm like, Wait, do you think you're writing a different person than the host? I was like, that's, that's fascinating. It's like, it's just me, like, like, I can't even get Arden to do an ad for me like, Hey, could you sit down and say this and she's like, leave me alone. And I'm like, Oh my god, I can't get anything. But I appreciate that. I really do. You're very you're very nice to listen to me rant and rave. I You caught me in a bad week. Like I said I

Unknown Speaker 1:24:57
anytime Yeah, fine.

Scott Benner 1:24:59
I made it. through the first two is the third one that got me. I was like, you've got to be kidding me. Yeah, I just can't Oh,

Unknown Speaker 1:25:07
my gosh. Anyway,

Allyson Hughes, PhD 1:25:09
that's really hard though. That's really really hard. A lot of time in.

Scott Benner 1:25:12
See, this is how I know you and I aren't married. You've heard me. I've heard me complain, and you're still being nice to meet you. We're ready to leave your husband because you drove across the country with me. You're like, this guy's been bitching for 15 minutes. I have compassion for him. Oh, yeah. uproot his life for you. And you're like, get out of the car.

Allyson Hughes, PhD 1:25:33
He's such a good person. I really don't deserve him. I mean, what can I say?

Unknown Speaker 1:25:40
He knows the problem.

Scott Benner 1:25:43
That's great. I just as I'm airing all my laundry here to let me get this thing out. Those of you who backstab me and think you don't know that I know, I know. I'm just too nice to say anything. Okay?

Unknown Speaker 1:25:55
Like, that's all

Scott Benner 1:25:56
you had. Ellie, you would be mesmerized by what goes on.

Allyson Hughes, PhD 1:26:00
People are awful. I, the online can. I mean, there's so much that's good about the diabetes online community and just online communities in general. But it can get very, very ugly. Everyone thinks they have to say their opinion. And everyone thinks that their nasty opinion is valued. And, you know, it just it just gives another type of media for backbiting sorts of things. It's awful. So all the

Scott Benner 1:26:24
people who wish I would come out and speak in their area, there are two places in the country that I will not be speaking that I was going to be speaking, because somebody who wanted that slot, took it from me, ah, by using their friends Endor money and influence to get me moved out of them. Because they wanted them instead of me. And it wasn't that they wanted a spot. They wanted my spot. Wow. So I'll be back. I'll just come the following year, and I'll smile, you'll never know what happened to me. But those people do that and think that no one knows. And they don't realize that I know.

Allyson Hughes, PhD 1:27:01
Yeah, it's, um, we say this all the time at work. It's like diabetes is a small community. And research is a small community. And you're always it's like any field, you're always running into the same people. You know, you get very close over the years, and it's like, Don't burn any bridges. Don't do anything that you that you shouldn't be doing. That's so frustrating. Sorry, Scott.

Scott Benner 1:27:22
I'll tell you what, we're gonna do this. Really, this will absolutely make all the listeners upset. I'm gonna stop the recording, and then tell you the story of why I won't be in some of those places. Oh, can't wait. Well, we get to know. Ladies and gentlemen, this was ali ali does really good work at t Wendy exchange. You wouldn't know that from this podcast. But what's the web address versus they check out? It's strange that is it work? Or? Yes, it's org. Yeah. All right. So I'll put it in the show notes. And you should go check out what they're doing because they're taking diabetes data and doing really cool things with it and trying to help you and everyone else. I will say goodbye. I'm pushing stop. Huge thanks to Alli for coming on the show and putting up with my shenanigans. Thanks also, to who? Well me, I'm just getting touched by type one.org. Please, please, please check out touched by type one.org. Wonderful, wonderful organization, helping people with type one diabetes, you need to know about them. And of course, T one B exchange is where Ali works. And double Of course, if you're interested in alley study, go to Juicebox podcast.com. Find her episode, Episode 346. I think I said at the beginning, and you'll be able to check out Ali's hard work. It's really impressive. I want to share this one last little thing with you two things, actually. First of all, I know I said a lot of stuff at the end of the podcast. 99% of the people I've met in this space are not like that. Honestly, 99.9% of them probably are just wonderful people, but the ones who aren't. They're a special breed. Anyway, what was the other thing I want to say to you? Oh my gosh. I'm sitting outside of my dentist office one day having just had my teeth cleaned. And I received a text from Allie has panicked. I didn't do a very good job on the podcast. She says we need to re record it. And I of course, told Allie and she's hearing this for the first time right now. She did a fantastic job and it was terrific. Everybody thinks they didn't do a good enough job when they were finished. But here's the truth. It had been long enough since Sally and I recorded that I didn't remember any of what we said. As a matter of fact, as I edited the show today and heard everything that went on I was like, Huh, I don't remember any of this was really good. I'm glad I didn't let her re record it. Because this is excellent. She's doing good work. You know about it now. People talked about how they feel about things. It's an honest conversation. I think that's all we can ask for. So hope everybody's well have a great week. I'm gonna put out a defining diabetes in a couple of days. So look for that. And thanks so much for listening. The podcast is about to have a monumental month and it's very exciting and humbling and I really appreciate it. I will talk to you all soon.