#371 Diabetes Pro Tip: Explaining Type 1

Explaining Type 1 Diabetes to friends, coaches, employers and more

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

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

Scott Benner 0:00
Hello, everyone. Welcome to Episode 371 of the Juicebox Podcast. Today's show is a diabetes pro tip episode, mostly sort of, you'll see what I mean in one second.

The pro tip series that exists inside of the Juicebox Podcast is mainly about management of type one diabetes. There's also some informative stuff like what can you do when you go to the emergency room to make your experience easier. And today, I'm going to be filling a need that's been presented to me by the listeners. So I don't know if this episode is for them to get ideas from, or for them to share, or maybe both. But in this episode of the Juicebox Podcast, I, along with Jenny Smith, Jenny, of course has had Type One Diabetes for 32 years. She's a certified diabetes educator and an all around amazing person. And me, Scott, who's you know, just the host of the podcast, and the parent of a child with Type One Diabetes. So this episode is for people who need to understand Type One Diabetes more, or for those of you with type one who struggle to talk to those people about what type one diabetes is. See, if you're like the school nurse, or a teacher, maybe my boss, friend, neighbor, somebody wants to have my kid over for a sleep over this episode is for you to try to understand better what type one diabetes is and what your role in it can be. And if you're a person living with type one or the parent of someone living with type one, and you're struggling for how to talk to people about it, this will be beneficial for you as well. This episode of the podcast does not have any ads. But I do want to let you know that the Juicebox Podcast is proudly sponsored by dexcom, makers of the G six continuous glucose monitor and Omni pod, the world's only to boost insulin pump. That greatest blood glucose meter in the world in my opinion, the Contour Next One blood glucose meter. We're also sponsored by g Volk, glucagon, Lily's chocolates touched by type one, and the T one D exchange. There are links to all of the sponsors in the show notes of your podcast player. And at Juicebox podcast.com. When you support the sponsors, you're supporting the show, but like I said, there's no ads in this episode because I don't know you're gonna give this what to your kids, you know, baseball coach, and what's he gonna do by an insulin pump. Having said that, dexcom.com forward slash juice box my omnipod.com forward slash juice box Contour Next one.com forward slash juice box touched by type one.org g Volk glucagon.com, forward slash juice box. And if you'd like to get involved in some amazing Type One Diabetes Research, T one d exchange.org. Ford slash juice box. Last thing before we start, 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. or becoming bold with insulin. And a huge welcome to those of you who don't usually listen to a type one diabetes podcast, those of you who care enough to try to learn a little more about type one so that you can be a better support system for the people you know, and love living with Type One Diabetes. This means a lot to them. I'm sure they're really, really excited that you that you took the time. So I hope we can make this informative and fun for you. I think we have let's get started. I want to jump right into this because this has been interesting since I brought this up to you the other day, I I sat down myself and I thought who in my time Have I spent have I had to describe diabetes to you know, when I started kind of making a list and then a lot of people a lot of people and and then I went online and I said you know into the private Facebook group for the podcast and I said Hey guys, Jenny and I are going to do this thing. Who do you wish you know, we could talk to and here's how the list came back. grandparents, teachers, parents, babysitters, somebody who might have my kid for a sleep over my child's friend's parents, a coach of a team spouses or significant others, co parents, roommates, extended family school nurse co workers bosses bus drivers and and what and family of adults with type one. So people who are diagnosed as adults who then are around other adults who never get Getting it. And then very much at the end of the list, someone said, Oh, I wish you could explain to chaperones and I started thinking,

everyone should have just answered with the same word, it should have said, people, because this is just, this is like everything else around diabetes like you like, oh, explain it specifically to a coach. So what I'm going to tell you is, I think we're going to have a conversation, that, whether you're one of the people I listed, or just a person who knows somebody with Type One Diabetes, when you're done, I'd like you to understand the basics of type one better, maybe a little bit of terminology. So things are happening, and maybe more so the mind of the person with type one, what's happening to them, and how you could be supportive of them. I think that's the goal here like not to speak to like, like there was there. In the beginning, I thought, oh, we'll do a couple of minutes talking to grandparents. And then a few minutes talk, and I'm like, No, no, it's all the same thing. Really. Right.

Jennifer Smith, CDE 5:59
Yeah, it is. And I it's really funny, you bring this topic up, because it's actually we do a monthly newsletter, and my my article last month was sharing your diabetes. Okay? And it was kind of along this same line, it was, how do you talk to other people about your diabetes and give them the baseline of what you need them to really know. Without, like a textbook, that's like 4000 pages long, overwhelming, it's overwhelming. And I some of the big points were one, set a time to discuss specifically diabetes, with these people, or this person, or this coach or whoever it is, I like your term, just people in general, right? Pick the person. You need them to know this, this and this, these are the important facts. Because it's a lot easier if you've set a time for it, than if you go to the coach at the end of practice. You're like, Hey, can you just take five minutes with me, I really want to talk to you about you know, Billy's like type one diabetes, and the coaches got, like, you know, soccer balls over there hungry and trying to get home. So to go

Scott Benner 7:15
home and get yelled at. There's a lot going on in my life right now.

Jennifer Smith, CDE 7:18
Right, right. So setting up a time and, again, the timeline of what are the important things you want these people to know? Like you said, the basics.

Scott Benner 7:27
Let me add this to that. The other things that people came back in their, in their responses very overwhelmingly was, I want this episode to be something I can text to somebody like a link and say, Please, can you listen to this and understand diabetes? Because many of the people who came into speak said, Look, I'm not very good at describing it. Like I can take care of myself. But when I start, there was an overwhelming feeling of when I start to explain it to somebody else, I either get frazzled or too detailed. You and Jenny do it. And I'm like, Alright, well, we'll do it. So Jenny's after you listen to this episode, and you decide you really want to help a person you love with Type One Diabetes, or someone who's in your class, or because there was one very specific woman who said, I'm a college professor, I wish I could explain it to my students. better, right. And so whoever you are, in this scenario, here's what I can promise you, Jenny, and I will not make this boring. And we will not make it overly, like taxing. It won't be so technical, you won't understand. And it should be a good runway up to you having that conversation that we just spoke about with this person in your life who has type one diabetes. So that's my overarching goal, Jenny, don't mess it up. Okay. Okay. I'm talking to myself. I don't want to mess it up. Do we start with? Well, we usually talk about diabetes in such a specific way. But why don't we start with just a really simple description of Type One Diabetes? You want to go?

Jennifer Smith, CDE 8:56
Yeah, absolutely. I mean, Type One Diabetes is the body's inability to create insulin, or to put it out into the body. And so without it, your blood sugar gets too high. So type one diabetes is a deficiency of insulin, it's specifically an autoimmune disorder, which means the person did nothing to cause type one diabetes. It's not because they sat in a hole hose for, you know, three years or whatever. So and I think that's a, that's an important one to put out there. And just the simple explanation, because there is a lot of misunderstanding around just the term diabetes. Sure. So

Scott Benner 9:37
yeah, and it is a lesson it's a genetic issue, right. It's an autoimmune disease. You know, you can use an example my daughter was two years old when she was diagnosed, she weighed 19 pounds and I you know, Federer, the same stuff, all of us feed our kids. And and her body just was like, you know, got confused one day, I mean, that's even that right for these people listening, I don't know exactly what triggered my daughter's type one onset, what I can tell you is that testing can prove that you have markers, that that make you more likely to get diabetes. I don't know if my daughter had them, obviously, because no one ever checked her. But she got sick. And, you know, it's always been my belief that her immune system got confused. And instead of killing her virus, Winton killed her pancreas for the lack of a better term. And I want people to understand, too, that the advent of insulin is still fairly new 1921 one, right. So, for context, if my daughter's pancreas would have crapped out in 1919, she would have died in a couple of weeks, right? That's correct. Okay. The insulin is the only thing keeping people with type one diabetes alive. Otherwise, the first time your blood sugar starts heading up, it will just keep going up and never stop. That's right, right. And you'll slip into a coma and die. Okay, I told you, this wasn't gonna be too technical. So so people are getting this insulin in, in a ton of different ways. And so I think that would be important, what are the different ways people get insulin,

Jennifer Smith, CDE 11:14
initially, and some people even long term after diagnosis continue to take injections. So the age old, you get a little like bottle or what we call a vial of insulin, they now come thankfully, and easily dispensing pens. And you dose it through the course of the day based on many factors. There's other ways such as an insulin pump, that you could take your insulin, kind of a fancy little page or size device that sort of drips it into the body through a tube, or if you're using a tubeless, one like Omni pod, then that would be another way to do it. So essentially, an injection or a pump, those are two ways to get in the body. Now there is one other way. I mean, if we wanted to be truthful about it, there's also an inhalable insulin called a frezza. So that's another way to use

Scott Benner 12:03
it, most people inject insulin correct. And so inject like Jenny said, with a pen, which really is just a very fancy syringe, you might see someone do it with a syringe, you might see someone wearing a device on their body, or carrying a device that's connected to their body with a tube, there's different ways. But in the end, you need to get that insulin under your skin, right. And this could happen for a number of reasons it could happen because you're eating, it could happen because your blood sugar just went up on its own, and you need to bring it back down. When it needs to happen, it needs to happen. And I want people to understand that asking a person with Type One Diabetes to go into the bathroom, and extensively hide while they're injecting is not the right thing to do. So if please, there's, throughout this, I'm going to tell you say things like, please don't ever say this, here's one of them, people around here might be uncomfortable with your diabetes, you can't do that to a person. Yeah, if they're uncomfortable, they can leave, I need to give myself this insulin. So my blood sugar doesn't go up really high. And don't get me wrong, like not getting the insulin is not going to you know, it's not going to kill you in the moment if your blood sugar is going higher, but here are a lot of things that could happen. They're thinking could become cloudy, right? Right, they could become agitated. So if you're a teacher, you don't want your kids blood sugar high, because they're gonna have trouble concentrating, thinking, they're not going to learn norming performing in all kinds of different ways. Same thing with sports, your blood sugar gets too high, you slow down your body has a difficult time, you know, I can see it my daughter's foot speed. If my daughter's blood sugar gets over a certain number high where it doesn't belong. I can literally see her slow down while she's running, she just can't go as fast.

Jennifer Smith, CDE 13:56
Right?

It would be the same thing too. I think in like a corporate world type of setting where someone may feel like it wouldn't be acceptable in order to use their insulin or to respond to their pump, telling them to take the insulin or whatnot. And the same thing if they're being asked to present or to discuss something that's very, very important. They may not have the ability to do that in if their blood sugar is not in the right place. Yeah.

Scott Benner 14:25
So you need to give people the freedom to do what they need to do. If you want them to be themselves, or be able to do the thing you're asking them to do or hope that they can do. They need to be able to take their insulin and feel comfortable about it. It's difficult to have. This is a lifelong disease like it's not going to it's not going to get cured anytime soon. It's not going to it's not going to go away. It's not going to one person said make sure people understand it doesn't just transform into type two diabetes, like it's a progression from one to two right? Right, so having type two diabetes, completely different thing, right. And so this person, it's hard, it's really difficult. Like, I really want people to listen and think that every time you have a body function that puts pushes up your blood sugar. And so for people whose pancreas is work fine, could be adrenaline, stress, pain, so many different things can make your blood sugar try to go up, when that happens to you out there with a working pancreas, your pancreas just stops it, you don't even see it happen. Like if you were monitoring your blood sugar in real time, and you got some adrenaline like it might blip for a second, but it would come right back. A person who doesn't have that their blood sugar is going to shoot up and keep going or get too high and stay there. And then they need to put that insulin in into their body, to bring it back down again. It's just it's 24 hours a day and to have somebody make it more difficult for you is, is kind of terrible.

Jennifer Smith, CDE 15:57
And I think in terms of even bringing up the technology that is available, such as an insulin pump in terms of delivery, I know that there's also the misconception even in our day and age right now. Oh, you've got a pump. It takes care of it all. Yeah. And that's a that's not true. 100% not true at all, there is so much that the person with diabetes has to interact with in order for that technology to do what it needs to do for them. So just because they're connected to these devices, can be helpful. But it's not doing anything without their interaction with it.

Scott Benner 16:36
Yeah. And it's, it's easy for people who don't understand to make an assumption, like, Oh, they got the machine, the machine fixes it. Right, right, or something like that. And I want to be really clear for everyone listening, like, I'm not coming down on you, there are plenty of disease states that I don't understand in any meaningful way. But what that does is it stops me from, you know, saying things about it that I don't understand. And like, there's a ton of different things. You might think, Oh, this is helpful. Like, if you find yourself with a parent of a child with type one, and they've just been diagnosed, and you think, Oh, this parents so smart, or look how well they're handling it. It's not right to say to them something to the effect of you know, well, God gave the child with Type One Diabetes to the right person, because you can really handle it. Right. Really think about that sentence. But you know, when you're in it, because it happens to a lot of people. No one's lucky that their kids got diabetes. Nope. No adult feels lucky. No one walks around going, thank God, I'm a head screwed on straight kind of person. And I'm the one who got type one cuz Jimmy up the street hot mess. And if he would have got it, it would have been way worse for him. It's bad for everybody. Okay, it's just that's a, so be careful how you speak to people. Right? I think I think about a person who's been on this podcast before who had a child who passed away and I asked like, what's the right thing for someone to say to you? And she's like, there is no right thing for someone to say to you. And and, you know, anything you do is just going to, it's not going to make anything better. Unless you offer like sincere, simple support. Hey, if there's anything you need, I don't know what to do. But if you tell me I'll do it for you that works with this as well. You know,

Jennifer Smith, CDE 18:18
I think it's I think it's along the same line as offering up information about your neighbors, Grandma, who is something Something happened because they had diabetes, I same thing. It's like, don't, don't offer up in terms of like a connecting point. You know, if sure if you've got a cousin who has type one or you know, an uncle who had type one, and you have a little bit of understanding that might even further your discussion in terms of what the person with type one talking to you could put back into the conversation. But unless you've really lived with it, or you have taken care of somebody with type one, please don't. Yes. Tell them about your neighbors, uncle's friends,

Scott Benner 19:04
Jenny's politely saying don't look at somebody go diabetes. Oh, where have I heard diabetes from my grandmother? Oh, you know what? Oh, my grandmother had diabetes. They cut her leg off. That's not a good thing to say to somebody don't do. Yeah, right. And just Yeah, don't don't do that. Okay, so keep keep those thoughts inside. Because that's not helpful. And it might have nothing to do with the person you're talking about your grandmother's situation, very well could be a ton different than this person situation. And that's important to understand, too, is that in this day and age right now, I know this sounds kind of strange. But this is the best time in the in the history of the world to be diagnosed with Type One Diabetes. So people have a much greater chance of staving off, what could be long term complications, and they have a much better chance of managing day to day in the moment in a way that won't impact their lives too badly. Now, I feel strange saying this because on one hand, what I'm telling you is that These people need some leniency, they need some understanding, they need a little space because they're making decisions about how their bodies, you know, working. And at the same time, I want to tell you if they can do anything, and so don't limit them. You know, and that's hard to do too, because you might not feel like you're eliminating them, you may feel like you're protecting them. And correct, they don't need that. And if they do need that, they'll they'll ask, they'll ask you for it.

Jennifer Smith, CDE 20:27
Yes. Right, exactly. Which is part of this, you know, the purpose of this is understanding, if they're having a conversation with you about what you need to know, the reason is, because a lot of times they want you to know what to do in case they need help, right? Some understanding about this is diabetes, this is what you know, might see me carrying such as the devices, this is I might make some noise, my products might be bet tie, or whatever, you know, but in case of this, this and this, these are the things that you could do to help me and this is how to help me right?

Scott Benner 21:03
Because they may at some point need that help. Right? And so you understanding like say you're a teacher, you understanding like signs of visible signs of hypoglycemia, okay, so low blood sugar, and I'm going to read your list which I'm not a big list reader on the podcast, but this person could feel shaky, be nervous or anxious. They could be sweating, have chills, feel clammy, irritable, impatient, confused, their heartbeat might pick up, they could feel lightheaded or dizzy, voraciously, hungry, nauseous, their skin sometimes can get pale, they'll look tired or could feel tired, they could end up feeling weak, their vision could get blurred or impaired. My daughter talks about her mouth gets tingly and numb if her blood sugar gets too low headaches, trouble coordinating themselves, clumsiness I'm this is coming right from the A's website, the American Diabetes Association associations website. in their sleep, they can have nightmares or crying their sleep. And if their blood sugar gets too low, they can and if it gets low enough, we'll have a seizure. And so they'd like to know if they're not making sense when they're talking so that they can take in some carbohydrates of some kind to bring their blood sugar back up. And so you being a person around them, like like a coach. And you have to figure out the line, right? Because these things while they can happen, may very well not happen. So think of the other side of it. You know? You've got a little girl on your soccer team and she's running around and every three seconds you're jogging next to her going, Becky, do you feel okay? All right, Becky, Are you dizzy? You don't feel clammy? Do you? Hey, Becky, Becky, Becky, Becky, you're ruining Becky's life when you do that, okay? Don't Don't do that. But at the same time, you could look over once in a while and visually, just, you know,

Jennifer Smith, CDE 23:00
evaluate the performance. If you're the coach, you know, how your kids usually perform or do things, you know, how they interact with their other teammates and whatnot. So yeah, it may not be

Scott Benner 23:12
at all, a strange thing to say, like, Look, we have a two hour practice. Everyone sits down, you know, halfway through and drinks water. I'd really like it. If Becky tested her blood sugar, then, you know, because I don't maybe you don't feel comfortable as the coach like you don't want to be on the hook for like seeing if this kids about the fall over or not right? I get that. So talk to the parents and say, Look, can we just coordinate a blood sugar check, you know, at some point, you know, for safety, and then make it normal. Don't call attention to it don't like it's happening. And everyone doesn't have to stare and people are going to stare in the beginning. But you got to just give the kid the the space to let it happen because everyone will get used to it. And I guess that's what I want to bring up with them. When my daughter was very little the first day of school. I'd go in and it's and I would give a talk like to the kids like five minutes on the literally the first day. Hi this is Arden. Arden has type one diabetes, her pancreas doesn't make insulin. Once in a while you're going to see Arden pull out this thing and give herself insulin with it her controller for her pump. Hey, you know what Arden is just like the rest of you. She doesn't need, you know, she doesn't need you to check on her constantly. But if she looks like she's busy, she's not making sense. It would be nice to tell your teacher, right? But it still didn't stop this one little girl from mothering her. And so she came home one day and she's like, this kid will not leave me alone. Like like and she goes it seems really sweet. But she won't stop I need this kid. Stop back off. Do you Yeah, like leave me alone. So that there's there's a balance in there somewhere where you can be supportive and understand Ending without being a burden to them or making them feel different. Or look that. And this is very important. Like it really goes

Jennifer Smith, CDE 25:10
across the board and what you're saying to not just the little kid component, but the teacher or the coach, like you said like bugging, bugging, bugging, are you okay? Do you feel okay, do you need some more juice? You know, that kind of thing? Or even goes cross crosses over into spouses, significant others? Yeah, you know, especially and I would expect that later in marriage, or later in partnership, you've had enough visualization to not be like bugging, bugging, but in newer relationships, I think an upfront important talk when you know that it's going a little bit further than just let's go out and get a drink or whatever, right? I mean, it's important to bring up this is how you could help me. Don't bother me, though. You know, don't, don't tell me not to have the potatoes with my dinner when we go out for dinner. Because Oh, my goodness, they have carbohydrate, in my usual how the potato

Scott Benner 26:01
makes your blood sugar go up? Thanks. That's what I want you thinking about right now? unless the person says, Look, I have trouble saying no to potatoes. So if you could like if they want it, that's different, right? It's could

Jennifer Smith, CDE 26:13
you remind me not to do exact Yes,

Scott Benner 26:15
when I see the french fries, if you could just go Hey, you told me last time, I shouldn't get french fries to bring it up. I don't think anything that we've said in the last couple of minutes about kids and coaches and teachers doesn't specifically apply to adults in adult situations, either. It's correct. It's all exactly the same. It's why I didn't want to break these up into like, okay, now, here's 10 minutes for your boss. If someone's working for you, and they have type one diabetes, they're going to have some needs. And the most important thing is to support them and not make them feel awkward or odd about it. And I'll tell you why. As a person who I'm hoping cares about other people who have type one, you know, you could create a, an eating disorder by telling someone, don't don't use your insulin here, because what you're saying to them is don't eat right now. And then they start associating the awkwardness of giving themselves the insulin with eating, and then they'll stop eating. And I know that sounds like oh, that won't happen, that happens a lot,

Jennifer Smith, CDE 27:12
or hide their eating right, or in an effort to not like show others. I mean, there there is, it's I mean, it's a whole nother broad topic in terms of diabetes, the eating disorders that are associated with diabetes. I mean, food is a huge part of diabetes management it is. And so it's not odd, that it can become an issue. But it certainly is something that in terms of being supportive for another person who has diabetes, you don't want to push the envelope that way.

Scott Benner 27:42
And I know that people listening right now don't know us. And they are like, it's 2020. Like, everybody seems super sensitive and social justice II and everything. We're not like that. Like, I'm not saying that at all. Like, I you can hear my terrible accent, I'm from the northeast, I'm good with like, Hey, get up, you'll be fine. I'm good with that I really am. But what I'm saying is, there's a real opportunity to mold a person in a positive way, or a negative way. And that goes for everybody I understand. But around this specifically, it does not take long to make someone feel different in a bad way. You know, and it'll stick with them, especially you teachers, who, you know, hear an alarm and are annoyed because you're trying to teach and it's alarming. Try to keep in mind that when that's happening, the student whose blood sugar is falling, who's now scared that they're going to pass out or die or something like that. They don't want this to be happening either. Correct. And you can't say let me just finish this lesson. Or they need to address because we've talked about high blood sugars, but low blood sugars are more immediate, immediate, yes. Right. You can't just ignore because a blood sugar that's falling could be falling quickly. And one of those issues could pop up out of nowhere. So if this kid's wearing a monitor that tells them like, Hey, your blood sugar is getting low, or they say I feel dizzy, I need to test or you know, like, you can't just say okay, well wait till after recess is over. Or as soon as I get done explaining this math problem, like they need to do it now. Which is another great reason to normalize it, let them take their meter out at their desk and check their blood sugar. It's not going to hurt anybody. And and they'll have an answer immediately about what to do next. But the five minutes you want them to wait could end up being much too much time for them. Yeah,

Jennifer Smith, CDE 29:34
yeah, absolutely. I mean, in terms of you know, even that also acknowledging what they're using to treat a low blood sugar is, is something that you also don't want to form any, like, wrong feelings about someone might use, you know, in terms of carbohydrate, it's just simple sugar that we really want to use to treat. So simple in terms of it could be juicy It could be Skittles, it could be something that we call glucose tablets. It could be honey in there multiple things. And everybody seems to have a preference for what is great for them and even flavor preferences. So just because the kid in your class is using like Skittles, and you're thinking, oh my goodness, Skittles, why are they so unhealthy? Right?

Scott Benner 30:23
Yeah, you don't understand what you're talking about, which is a good is a great example of keeping your mouth shut in that situation. Like, they're not eating Skittles. Because you're, here's what's gonna happen to you, you don't know what you're talking about, the kid takes Skittles, and you think in your head, this is why they have diabetes, look how they eat, no, they need sugar to go into their body so quickly, that it can literally fight off this extra insulin and stop from making them too low. So know what you don't know, I think is important. And if you want to know find out more, but don't say silly things to people that, you know, it's not there. It's not their preference to have diabetes, the kids not looking for Skittles, you know, like, an adult doesn't want to get up in the middle of a business meeting and bang a Gatorade back. They're not like, Oh, you know, what I want to do today in front of 30 people who I'm trying to get to take me seriously. And that's the other thing too, is that you have to understand that adults often are hiding their diabetes at work, because they don't want you to judge them and like and lose out on on professional opportunities. Correct?

Jennifer Smith, CDE 31:25
Yeah, promotion and those types of things. And I think that's also in terms of people with diabetes. As I mentioned, initially, you have to really know, who do you need to share your diabetes with who is really important as an adult, it might be your boss, it might be the co workers at the team members that you work with, as a child, it might be you know, your teachers, and hopefully your parents will help with that. Even some of your really good friends. I mean, I remember as a kid, when I was diagnosed, it was really helpful to have some of my really good friends know a lot, you know, in terms of like, their understanding language, teaching them things about why I was you know, doing a finger stick and all of that, but I think it comes down to defining who do you need to share with and what applies to this situation? You know, you're probably not going to teach your soccer coach about carbohydrate counting. I mean, that's, that's not purposeful. But you're gonna teach them things like hypo awareness and you know what to do in case who to call emergency contact to there are defined pieces, I think to teach everybody

Scott Benner 32:37
Yeah. And so it's also important to understand the diabetes is mostly an invisible disease meaning that the people around you unless you're having a struggle, aren't ever going to see it. As a matter of fact, I pulled this up here just to so that people can have a an idea. Former Chicago Bears quarterback Jay Cutler has type one diabetes. Bret Michaels has it Nick Jonas has it and rice the author has it. Mary Tyler Moore, my close friend of mine coaches for the Philadelphia Phillies Sam fold he has he used to play for the Oakland A's he was in centerfield had type one diabetes. There are plenty of people. The Justice Sonia Sotomayor, right. Right has type one. So you

Jennifer Smith, CDE 33:22
can do was a baseball player?

Unknown Speaker 33:26
Atlanta.

Scott Benner 33:28
Oh, yeah. There's a guy Well, there's a guy pitching for the cubs. He's been on the show before Brandon Morrow he has it. I think the tight end of the Ravens has it. There's, there's nothing you can't do with Type One Diabetes. there's a there's a guy that I know really well, who's a four time Olympian who has it, right. So and, and the point is, is that you look at those people, and I don't tell you they have type one diabetes, and you're never going to know these people are doesn't mean it's easier for them. They don't have the easy diabetes, because you don't notice it. They work very, very hard at their health. I know it's hard to imagine, but I the best I can say is imagine that you had to think Breathe in, breathe out, breathe in, breathe out, or you wouldn't breathe. Like that's what it feels like having type one. I'm going to eat something I need insulin, it has to be this much. Not that much. I don't want to get too high. I don't want to get too low. I can't have a bunch of insulin in me when I go for a run later because I might get low then it is like constant kind of tapping on the back of your head. You know, I call

Jennifer Smith, CDE 34:31
it diabetes inner monologue. Okay, let's see

Scott Benner 34:34
Jenny. Jenny's had type one for 31 years now. 3232 Okay, regulations. And, and she can tell you that you Jenny's really, really good at managing her diabetes, but that doesn't make it No, of course, but that doesn't make it not in her mind. And and so it's there,

Jennifer Smith, CDE 34:55
right and then everyday conscious effort.

Scott Benner 34:57
Yes. It's so if you're a nice That so that you'd hear that and so that if you are the spouse of a person who has type one, or your child has type one, but your spouse takes care of most of the management, you may not understand what's going into it on an emotional and physical and maybe sometimes lack of sleep level, it's really hard. It's incredibly hard to do well, it's also incredibly hard to do poorly. So if you're really great at managing or terrible at managing, that that comes with different struggles, people who are great at it understand, you know, the timing and how to take care of things in a way that maybe some people don't get to understand. But the people who are struggling, are aware every moment of the day that they're probably on their way to complications that are serious, because they can't figure it out, or because no one will help them. It's constantly in their head. Now, if you're co parenting, I can't tell you how many people come to me and say, can you please find a way to talk to people who are like a divorced spouse? Or, you know, a step parent or somebody who's not for the lack of a better term in the fight constantly? Right? They only see, oh, look, he's fine. Yeah, this isn't that hard, or his blood sugar just went up for seven hours, that was no big deal. It is a big deal. And and, either, you know, I, I don't normally get preachy, but either figure it out, and help or get out of the way. But don't let your ego stand in the way of someone managing their health, which happens a lot. It may not be happening to you person listening right now. But it happens a lot more than you might want to think. Right? You know? Anyway, I didn't mean to get like that. I just, I don't know if you saw the notes from like my X, you know, my kids blood sugar's terrific for a week and then they go to my exes for the weekend and his blood sugar's 300, all weekend long. so incredibly unhealthy. And, and I

Jennifer Smith, CDE 37:05
see the same thing with you know, as good as family caregivers could be like, you do the best that you can as parents, and then you have a weekend away, and you're like, Yay, we've got a weekend away. But even in terms of those parents that weekend away, is not free of diabetes thought, right? You know, their thought has gone into prepping whoever the caregiver is prepping their child for they may not know this. So you know, text me if something comes up, or you know, the grandparents or caregivers or godparents or whoever there are, that's taking care of them thinking, well, can't they just have a little of this? Or Can't we just give this to them, and we don't have to really worry about it, everything, everything is considered in diabetes. And as you said, you know, that couple of days that they're running now at 300, because you didn't follow the set of directions that you were given. That's making a difference in that person or that child's life. Yeah,

Scott Benner 38:04
no, and, and so that people can understand when your blood sugar is high, There's too much sugar in your blood and no way to release it, the insulin is what releases it, we're not going to get into super technical stuff. But when you hear later, you know, when you turn on the news, and some guy died of complications of type one diabetes, now, you know, what they really died from was a heart attack or a stroke, or an aneurysm or something that comes from too much for the lack of a better term sugar scrubbing away, you know, in the inside of your body, is it going to happen today, if a kid's blood sugar goes up to 300 watts, because you messed up the insulin? No. But if it keeps happening, it will happen very likely one day. And so you're making a decision today on Sunday to maybe save someone's life 30 years from now, but that's, that's worth understanding, you know, and just because it's going to be later doesn't make it not super important. And don't forget to you're helping them be clear minded, you know, thoughtful, being able to learn or perform like a lot goes wrong inside of the functioning of your body when your blood sugar's high. It just, it's just very important. And the people who love you and are hoping you'll understand are, they don't know how to explain it to you. So they asked us to make this. I will tell you, Jenny brought something up a minute ago that I wanted to kind of like add on to if there was a super simple way to make it, okay. Everyone with diabetes would be doing it already. And you wouldn't have to worry about it. There's no shortcut to it. So if you're having a pool party, I think you really need to try to understand how terrible it is to not invite one kid because you're scared or you don't understand or you just don't want the hassle. Like, just find some time talk to the parent come up with a simple plan that everybody can deal with because that kids sitting at home and they're thinking I'm not at this pool party right now. I'm not gonna sleep over right now, because I'm a problem. That's how it feels to them. Right? I'm broken, and nobody wants me around. And you can't you can't be a part of making people feel that way.

Jennifer Smith, CDE 40:11
No. And if you don't know, like you said, it's, it's ask, you know, a lot of the kids that I work with, that's one of the big things I bring up with parents, you know, it's, if there's going to be asleep over something they've been asked to, again, defining a time to sit down with those parents, or even the good, the good friend's parents, and make sure that they have a basic baseline kind of understanding. But I think it also takes from the standpoint of not not being the parent with a kid with type one or not being you know, the employer who has type one or any experience with it, it takes asking, really just I mean, don't be afraid to ask any question is a really good question. As long as it's not, I guess derogatory, or, you know, it doesn't come out as well, should you really be doing that? You know, I don't know very much about this. But should you be doing that

Scott Benner 41:03
I know, a lot of people have type one diabetes, don't ask them if they should be eating something that doesn't sit well with them, you know, they'll, they'll, they can eat anything they want if they know how to use the insulin to manage it. And and so in the end, it's just that idea of us being supportive. And like Jenny said, if you don't understand, try to find out and understand that when you go to find out, it's very possible that the person you're going to ask them mother of a kid who's had diabetes for six weeks, she might not understand yet, either, you know, and so her her instructions might seem like a lot, or Babli, like, or I've babbled a lot of people when my kid first had diabetes, I'm like, Listen, you don't understand, she can't get highs, you can't get low and you start rambling. And before you know it, you're like, Oh, great. I'm the crazy person in the room.

Jennifer Smith, CDE 41:51
You get the glazed over eyes. And they're just like,

Scott Benner 41:54
I always imagined, somewhere between like, I'm so glad this didn't happen to me, and why won't they shut up, but they won't shut up because they're scared, right? Because this stuff as much as it seems like, you can make it seem mathematical. Diabetes is not like I take a pill every morning. And I'm okay. It's very fluid, it changes pretty consistently, depending on a ton of factors. And the people who really understand it, or the people who are living with it, are just sort of struggling moment to moment, because they don't know what's going to happen next, it feels like you're running for your life in a disaster movie. And you know, you're like a bridge collapses underneath of you, and you pull yourself up on the bank. And then as soon as that's happening, a zombie bites your leg and a building falls on your wife, you know, like, you're just like, wait, when is this gonna slow down? You know? And at the same time, I know, I just said that. And it's true. This is gonna sound crazy. Don't treat people like they're running through a disaster movie, because they're trying to find some normalcy. And you could be a big help in that.

Jennifer Smith, CDE 42:59
And I think sometimes, within that understanding, let's say you're the teacher, or you're the boss, or you're the coach, and you've, you've been schooled, right, somebody sat down with you, and they've given you information. They're like, this is the plan of action. And then next year, they come to you, and they're like, Okay, do you understand everything? And you're like, yeah, yeah, yeah, I got it, you gave me this whole, like, you know, hour long, entire, you know, information session, you're like, Okay, but this year, this is a little different, right? This is what we're experiencing now. So know that, like, with Type One Diabetes, also kind of, it's a little bit more fluid. There's, there's change that ends up happening, you know, last year, to juice boxes at the middle session of a soccer match, might no longer need to be there. This year, the reaction is a little bit different. So, you know, also continue to ask questions along the way to say, Well, does anybody anything changed for you? Or you know, is it is it still the same? Do we need to consider anything different? I think that's why in the beginning of the year for kids, especially, there's always a there's a point at which you need to go in and you need to reestablish that care plan for this year, what's going what needs to be different, what needs to change? Because Because life changing, right?

Scott Benner 44:13
And and seriously, because your grandmother or your aunt or your uncle has type two diabetes, you don't understand type one at all. There's nothing about that. That translates over to this in any meaningful caregiving kind of a way. I remember just recently we were having a conversation before a school year. And one of the teachers, you know, my daughter's information about her blood sugar is on her cell phone, right, which is really cool. And so the teachers like, well, we take the cell phones away at the beginning of the class, and I laughed, and I was like, that's fine Arden's not going to be giving you her cell phone, she needs it, you know, make life and death decisions. And she's very good with their cell phone. She's not going to abuse it and everything like that. She was well what do I tell the other kids? And I said, I swear I said this in a roomful of about 10 teachers that tells me them if they want to get a lifelong incurable disease, then they can keep their cell phone on them too. Otherwise, they should shut up and like, and you have to have the nerve to do that, like you should turn to 20 other kids and go, listen, her situation is different than yours. I don't even care if you but just stop, you know, like it's a it's a big deal. Imagine wanting to use someone's diabetes as an excuse to keep your cell phone or to be a malcontent for a second, and then you as an adult, don't just shut that down right away. Instead, you're like, Oh, well, you know, Kim does have a good point. It's not fair. Of course, it's not fair. It's also not fair that my daughter's carrying a juice box with her and like, something called glucagon in case she passes out to somebody can stick it in their leg. It's not fair either, you know. So just think I'll tell you a common sense, is, is a huge help with diabetes. It really is, and and especially about being around them. But let's look what I think everybody understands. Now, hopefully, why don't we drill down a little bit more about how in a situation whether you're a teacher or grandparent who's babysitting or something like that, or a, you know, a boss who's trying to, you know, keep somebody healthy? Like, let's give them more nuts and bolts of what goes on in the day of a person with type one diabetes, and how they may be able to be helpful in those situations. So, I mean, but before we do that, Jenny, I'm sorry. Can you explain to people what it feels like to be high and what it feels like to be low? for you personally, it's gonna be different for some people. But

Jennifer Smith, CDE 46:35
yeah, so lows. As I said just a bit ago, low symptoms for the person can change through the course of life with type one, too. So my lows now, I feel as though I have like these racing thoughts. I feel like things are going really like exponentially fast. But I feel like I'm moving through mud. Like, I feel like I just can't get there. Even though everything in my brain feels fast. I feel like I'm just moving at like a snail's pace. It feels horrible. I also, for a long time, it started in college, and I didn't have this symptom before, but kind of like you mentioned that like nom, with Arden, I have like this numb, tingly tongue kind of feeling for low blood sugars. And I've never thankfully knock on wood. I've never gotten to the point of needing glucagon, I've never had to use it in my 32 years of life. Nobody's had to give it to me. I have had to have assistance for treating a low. But um, you know, sometimes I've, I've, like started talking kind of weird, like, not really what the whole conversation was about or like mumbling and sort of rambling. And my husband said, like, your blood sugar's kinda low. And this was before CGM, like we were married early on. Yeah. You know, he knew some of the things to watch for. So I mean, those are my lows. Now, when I was younger, I definitely was shaky. I mean, it was very visibly, my blood sugar was low. And again, that was a time when there were no continuous monitors and pumps were not really beneficial. So but highs, highs, I get really, like tired, and really kind of, like more annoyed, I don't get annoyed, I don't get that like, irritated angriness with lows like many people can get, I get that more when I'm high. And I feel like I just can't put a lot of really good, like thoughts together consistently, I feel slow, so hard to put the

Scott Benner 48:52
effort in for anything. And it's not something that you can just fight through. It's not like that. It's not, it's not like I didn't get enough sleep last night, but I need to be at work. It's an absolutely physiological issue that is limiting you. So for people listening, it's sugar, glucose is the is the energy your brain runs off of. And having the right amount of it is perfect. Having too little of it, you know, is goes the way we've discussed and having too much of it does something to your body with a working pancreas just keeps you in a great range all the time. So you don't experience all these things. But a person who maybe could do something so simple as Hmm, let's see. Let's say you have a kid in your class who says I have to give myself my insulin right now because I'm eating in 10 minutes. And you say no, no, we're gonna finish this first. Don't do that. I don't want you giving yourself insulin in front of all these people. Well, you've now missed time, their insulin with the impact that the food's going to have on their body, which will very likely drive their blood sugar higher and cause what Jenny just described. Similarly, if they say I put my insulin in 10 minutes ago I know you want to talk for five more minutes, but I have to start eating now. You can't say no, because then their blood sugar could go the wrong way the the insulin will continue to pull the sugar out of their blood, it doesn't know how to stop like a, like a healthy body does,

Jennifer Smith, CDE 50:14
it's expecting there to be food there to work with.

Scott Benner 50:16
Yes, and when that foods not there, they can get awfully low and all the way up to like, I don't want to, like, you know, I don't want to make you feel like I'm trying to be dramatic, but you could kill them. And you know, anywhere from shaky to not making sense to angry to seizures to passing out to dying, like if you take too much of that sugar out of their blood. That's like taking electricity away from a light bulb, and you can't turn it back on again, by putting the sugar back in after it's off. So it's really important. And at the same time super important not to make people feel like pariah and and not to give them long term, serious psychological issues around this thing that they you know, I'm gonna say this, but I don't think it matters. They have nothing to do with getting it. But even if they did, why would you? Why would you want to make them feel that way? You know, and I think that's important. And I don't think any of the people listening to this want that. You just don't know what they're talking about. And then you make assumptions. You know, I don't know if a lot of the things that we think are is anecdotal, you know, we kind of went over like, oh, diabetes, that keys off. My grandmother had diabetes, I understand diabetes, I live with my grandmother for three years. No, that's different. That's probably type two diabetes. And your grandmother probably took a couple of medications and, you know, different thing. But the person who says that? I don't think they say that out of malice. I also don't think the person who tells you, you're so strong. Thank God, this happened to you. And not me. I don't even think I don't think that person means that with mouse. No, you know,

Jennifer Smith, CDE 51:51
they're in any conversation, we're always trying to find a connecting piece, you know, I mean, communication is that it's a given a take between two people or six people or whatever. But if you're in the, if you're the person that doesn't know, then ask more than talking. Yes. Right. It's, it's always, well, goodness, I, you know, I didn't know that you had type one diabetes, tell me what that's like. I mean, that's a very easy, simple, you know, and if the person really doesn't want or need to share with you, maybe they would just say, Well, you know, I manage it, and it's okay. But if they're, if you're sharing with them for a reason, then continue to really be more the ask the questions. But don't share too much. Unless you truly have some experience to share. I feel

Scott Benner 52:38
like before we go over nuts and bolts like management ideas that people will have to intersect with, I think what we should really be saying here is, in case you haven't been paying attention for the last 49 minutes, this is about communication. And most people are terrible communicators. And it's because they don't listen enough, and they interject their thoughts. And and it's a very human thing to feel like, you know, but you don't like I could sit here for the rest of my life and make a list of things I don't understand. You know, but I'll tell you what, put me in a situation where one of those things, I probably puff up a little bit start reaching into my common sense, or, you know, a little bit of my anecdotal information I have, and I start saying, No, no, I know what's up here. You know, it's, it's like talking about, I know, we're recording this during Corona. But like, it's, it's that thing, when people step up, they go, Oh, no, no, you know, what you have to do you have to do this. How do you know that? Right? Is it because you're a Harvard researcher? Or is it because you heard a guy say a thing, and now two people said it, you're like, Oh, that must be true. And that's just how our brains operate. And it's very valuable day to day. It's not very valuable when you're trying to talk to somebody about something important like this, that you don't understand. And they very well may be struggling with as well. Right now. So anyway, All right, I'll start you jump in. Okay, I'll do breakfast, you do lunch, and we'll go from there. My daughter gets up in the morning. And if we're lucky, her blood sugar's been stable overnight. But if she's been low overnight, we may have had to take away some insulin, or give her food, she could wake up a little higher. Because of that, it could throw off the timing of her eating, she might end up being late for school because of that. She may end up being a little rundown. You can wake up if you have a bunch of low blood sugars overnight, you wake up with, but people some people call a low blood sugar hangover. Yeah, right. And so that could be that. So you got to give these people a chance to get their lives moving. And then they've got to get to work. And what if I get myself insolence or on time and I have to get my car then and drive to work and now I'm scared I could get low while I'm driving like these poor people or you're just eating, you got a pancreas, it works. You get up you make some eggs, you throw them in your face, you run out the door, and it's all good. People with diabetes are already 45 decisions into life and it's 730 and they haven't been in the shower yet. So they so they get that together. My daughter, you know, heads off to school and, you know, half an hour, 45 minutes later, she needs to know what her blood sugar's doing. So she's gonna have to look. So you see, my daughter looked down at her phone in the first in first class, she's not ignoring you, she's making sure that her blood sugar doesn't get out of whack. And then she's got to start thinking about like, Oh, I'm getting low, and I have gym two hours from now. And, and lunch is going to be in three hours. And, you know, I have to give myself insulin during social studies so that it's working for, you know, all that stuff, right. And they have to count their carbohydrates and their food. So I'm going to ask Jenny to explain like, what what they're doing, they're around their meals.

Jennifer Smith, CDE 55:41
Yeah. So I mean, carbohydrates are, it's just a big word for sugar, right? I mean, all all carbohydrate foods, like starchy foods, fruit, even vegetables have some kind of carbohydrate or sugar in and when we take insulin, insulin is meant primarily to cover the impact of carbohydrates. So timing is really important around that in terms of like you said, she might need to take her insulin in social studies so that by the time she gets to lunch, the insulin is already there, the way that our insulin today works, it's meant to meet with food in the system. But our insulin has to actually do what we call peaking, kind of get in get working get circulating in order for food, carbohydrates was which digest really fast. Once they start, you know, getting into the stomach, that insulin has to meet it at the right time. And so when we count our carbohydrates, it's a certain amount that goes along with a certain amount of insulin, so that our blood sugar doesn't get too high after that might involve looking at a food label that might involve looking up information on your phone. So that maybe you're you know, visiting an app that's got a calorie or a carb counter in it, you may see somebody again on their phone or their device looking something up, and I guarantee with diabetes and fits around a mealtime, it's not that they're ignoring you or trying to be rude, it's likely that they're looking for information, or maybe that they're telling their pump to do something important. Coming into that meal time.

Scott Benner 57:13
And if you stand in their way of doing that, then most people to feel like they fit in Next time won't do it, then you'll make their insulin late and they're going and their blood sugar's gonna be higher. Not everybody is me, I don't care what people think I would just do whatever, you know, and I've raised my daughter that way. I'm like, Oh, don't worry about them just do what you need to do. But But you have to understand that many, many people can't overcome social pressure. And so you pressure them even on the way you don't understand, you may send them in another direction. So they count all these carbs that give themselves their insulin. Now they're not sure if it's going to work, their blood sugar might go up and might go down. Now they might have to have their meter out to check their you know, they might have to poke a hole in their finger, make some blood come out, check it with a test trip, some people might be wearing a glucose monitor that's feeding their, their blood sugar live to them on their cell phone, there's a lot of gear they have. It's not, you can't restrict their access to their gear is is a big thing. Because I've seen people say like, Oh, just leave your bag here. Like I need that bag. I can't just leave it here. And that might mean if you're a teacher, that at recess for this year, you're gonna be wearing some kids bag over your shoulder at recess, and just I know it sucks, but just do it. And that's it. For for, for I was good place.

Jennifer Smith, CDE 58:29
Oh, I was gonna say along with that, like in terms of like, Oh, you have to leave your bag here, whatnot, I've worked with quite a number of adults, especially who are government employees weren't allowed to run their phones aren't allowed to have certain devices like a phone or whatnot within their government building. And I think the important thing, I mean, if you are certainly, you know, within the realm of being an employer, for people with type one I policies need to change then that's the biggest thing that I can say, because while the device itself might have pieces that you don't want within the building, you're really restricting their ability to have a healthy life in terms of also what you're asking them to do performance wise on the job, things change. And that

Scott Benner 59:11
goes right to what I was gonna say with like school nurses, like, I know you've been a school nurse for 25 years and no kid has ever died from type one diabetes, except the way that you took care of it 15 years ago is not the way people take care of it anymore. It's much more fluid. It's It's It's better. It just it really is and and saying to somebody Oh, it's okay. Or I'd rather their blood sugar be high than low? No, you wouldn't rather their blood sugar behind them low you'd rather the blood sugar be normal normal than either of those things. Stop finding either ores in your head, I don't want to go down the wrong road away from away from diabetes, but everything's not black, white. It's not this or that. There's all kinds of other options and gray areas and just because your brain picks I'd rather be high than library Rather than behind the load that doesn't make you right. And that doesn't mean that's the only option. There are a ton of options. Kids having to leave class, to go to the nurse to do diabetes related things. That's bad. Okay, I know you think it's Oh, they need to be around me. So they do it right, you need to everybody needs to teach them how to handle it on their own, because lose losing five or 10 minutes of math when you're too, you know, in second grade is one thing, but losing 10 minutes of advanced trigonometry is another thing, you know, like, or

Jennifer Smith, CDE 1:00:31
may miss the whole concept.

Scott Benner 1:00:32
Yes, and it's gone. And and, and if you learned how to manage on your own in the moment, you can just kind of find a need meet the need, keep going instead of wait till the needs a problem, go to the nurse spend a half an hour getting out of the problem going back much better to be proactive than reactive. And the going to the nurse thing all the time is reactive, it's waiting for a problem. These things can can be done in classrooms. It technology's amazing. My daughter has been managing her blood sugar through text messages with me for a decade. Right and, and she does no lie. Since the last day of second grade, my daughter who was a junior in high school has not been to the nurse's office for anything diabetes related in all that time.

Jennifer Smith, CDE 1:01:20
Well, and even in terms of like safety, too, you know, I know that there are a number of schools and families that have worked with Well, they have to send my child to treat the low blood sugar to the nurse's station, it's down three levels and across the building and whatnot. And like, blood sugar is low, they need to treat it in class. Now, there's no reason that you're sending a kid whose blood sugar is dropping, you know, for a five minute walk through the halls in order to go suck some juice down in a nurse so they can watch and make sure they drink the whole box. That's ridiculous. Like

Scott Benner 1:01:50
they're like, well, we'll send a kid with him like, Oh, great. So there'll be another eight year old there, because I'm always putting eight year olds in charge of important things. You know, hey, listen, you just go with Jenny. And if she passes out, you know what to do your aid. Exactly. 20 year old wouldn't know what to do, we'd be like, oh, what happened? Jenny fell over, we left her there. And she died. Like, you know, like, they just don't put kids in charge of stuff. It's weird. Like I get if it's a little like, Oh, she just wants to have somebody to go down with and it's all nice. But the nurse's office is for emergencies. And here's the crazy thing. Having Type One Diabetes is not an emergency, it's just a, it's just an extra thing you do during the day. So stop treating them like they're sick, Trump's stop treating them like they're broken. They're, they're just they're not, you know, and so and so listen, they're gonna have to get on the bus, or you're gonna have to drive home from work. And you're still thinking about your blood sugar. And so if someone comes to you and says, Look, I need you to watch my kid tonight for a couple of hours, or you're the babysitter, or a grandparent, it's very doable, someone's gonna say to you look, eight o'clock, test their blood sugar, you know, text me the number, I'll help you do what you do. If you know if the numbers in this range, that's cool, give him this much insulin, let him eat this snack, you know, and here's what the snack is. Just follow the instructions, the person giving you the instructions is fairly confident that they're that they're right. And questioning them all the time is bizarre, you have any idea how many school nurses fight with parents, like I've been taking care of this kid for 10 years. And you want to tell me how to do it now because that's how we've always done it here. Very strange way to come at something. I get that you don't want to get into a long conversation with a family who maybe doesn't understand and maybe least common denominator, it might make it easy for people who don't know, but instead of doing that to them, like what if you said to them, Hey, I think there's a way we could do this that your kid could be healthier or you know, that kind of thing. And, and I want to say to I'd like to give Jenny a chance here to talk about what it would feel like if her spouse had those kind of like anecdotal thoughts and was leaning on her all the time. First of all, I'd be dead. She'd bury him somewhere. It's over. She wouldn't take it. But But like, what would it be like for another adult who you respect in all other things, to suddenly have thoughts about your health that that aren't warranted or founded?

Jennifer Smith, CDE 1:04:21
It would be it would, it would feel horrible. I mean, this fact that somebody that like you said you care so much about and that you have a lot of good rapport and almost every other thing that you talk about and live with and decide about together. I mean, it would make you feel kind of countered, honestly, in terms of what you've been doing and also like visually how you feel like they're now seeing you. Like is it all about this is this all they see now is a really gosh, they're they're really worried about this or they feel like they don't have any, there's no confidence there. And what I in what I'm able to do for myself, you know, I've been managing this for 30 some years. They feel like I can't do it anymore, that they're constantly asking like, are you okay? Or did you just check your blood sugar before bed tonight? Because, you know, I heard your ducks come later

Scott Benner 1:05:13
today, feeling like feeling like someone looks at you and sees diabetes, not you is is is kind of crushing, you know, and that's another great little tool you're looking for a tip don't lead with how's your blood sugar every time you see somebody, something else first, how's the day? Isn't it sunny out, blah, blah, blah. Like even if you're the school nurse like just walking in there. It's a drudgery for kids, right to do that.

Jennifer Smith, CDE 1:05:36
Like it's very rare for my husband to actually like, ask, even if he hears like my Dexcom making a noise or something. It's very rare for him to ask I he does have the follow app on his phone. And even with that, he never I think it was maybe a month ago that he texted me to ask, you know, I've gotten these like urgent, low alerts. He's like, you know, and I've gotten a couple of them like, are you okay? It's kind of all he asked, or, you know, and I was like, yep, it's the sensor. That's totally off. I was like, I just restarted it this morning. Yeah, I actually texted him a picture of like, my actual, like, finger stick. I'm like, I'm like, 92. Totally fine. He's like, okay, I just wanted to make sure that he's like, cuz I keep getting them. And I just want to make sure that everything was okay. But other than that, usually it's not, you know, it's not even something I do.

Scott Benner 1:06:31
But it wouldn't be pleasant if if he was constantly.

Jennifer Smith, CDE 1:06:34
No, in fact, usually my my late native work, in which he doesn't work, he usually makes dinner, and he'll actually usually text me and ask, you know, hey, I was gonna make this this evening, you know? This is how much carbs in it, because you know, is that I need to Pre-Bolus or he'll have measured something for me. And this is how much was in it? Or, you know, when do you think you're going to be done, because he knows that the Pre-Bolus component is really important. So those kinds of pieces are really helpful. They're not, like, annoying to give example. It's

Scott Benner 1:07:08
a good example of him. Like, look, what are we saying, Listen, talk, ask questions, be empathetic, do things that are actually helpful, not that you think are helpful, right? I learned that from being married, by the way, that the things that I think my wife wants aren't necessarily the things that she wants. And that you know, and that I would be much more helpful if I did the things that would actually be beneficial to her and not the things that I feel would be beneficial, right. So listen, talk, ask questions, let them talk, realize it's hard for them as well. And like Jenny said, at the beginning, set a time to sit down and talk about this. And if you don't understand, keep asking and understand that things could continue to kind of morph and grow and change and that what you know, today to be true, very well may not be true a year from now. Right? You know, you've no idea how things evolve and change hormones and kids are huge stress is, is can sometimes be hard on your on your diabetes, but I really do want to make sure that no one leaves this feeling like oh, well, people with type one diabetes, I shouldn't hire them. I shouldn't put them on my kids baseball team. It's not the case. With with good support and understanding. I mean, this Okay, you guys are listening. Because somebody sent you this episode, you don't know this podcast, you don't know me. I've met thousands of people with type one diabetes in my life. And overall, some of the kindest, smartest tuned in people that I've ever met in my life, like, imagine how tuned in you are when you have to understand the inner workings of your body constantly. You want these people on your side, like they're, they're great teammates, they're there. They're great coworkers, there's just a little bit that they need you to understand. And then you'll find a rhythm. That's the other thing is like, this isn't forever, you'll find a rhythm together, whether you're, you know, you know, the parent of a friend of a kid or something like that, or whoever you are, in this scenario, you do this more times, it won't be a thing anymore, you'll just you'll have it, you know, and it's worth doing because you're going to get to know some great people who otherwise may be marginalized. And I don't know, just think about it, like you've an opportunity to put in a little bit of effort to figure something out. And keep a kid from being the kid who's not invited to a birthday party, or a person who loses a job that they're completely qualified for, because they got low at work, and nobody knew how to help them that made all of you nervous, you know, right, that that sort of thing. I want to say to that, if you really want to dig in more, there are episodes of the podcast called defining diabetes. And they're very short and they they define very specific things. So like if we set a word here, like Bolus or Pre-Bolus, that you didn't understand, it will explain that to you very simply. And if you really want to dig down deep and understand what people Thinking about when they're managing their blood sugars. There's an entire series of episodes called diabetes pro tip. Right? So it's diabetes pro tip Pre-Bolus diabetes pro tip something, there's maybe 20 of them by now, if you really want to understand what people with type one diabetes are thinking about, those episodes will take you well inside. And same thing for people listening who are like, I can't make anybody understand Pre-Bolus sing like just you could send them one of those. So

Jennifer Smith, CDE 1:10:27
yeah, I was actually going to mention that too. So yay.

Scott Benner 1:10:30
Thank you very much. And this is the first episode that Jenny and I recorded with a new microphone. And I have held in my excitement about how good she sounds the entire time we were doing this. So for regular listeners to the podcast, you they're all right now going like Jenny sounds so much better. And for everybody else, they're like, Huh, I didn't know that was a big deal.

Jennifer Smith, CDE 1:10:49
I asked Scott, if it was actually gonna get rid of my Wisconsin accent. And he's like, Yeah, probably not. Not. No, it'd be so much clearer.

Scott Benner 1:10:55
You talked earlier about the night, your husband when you work late, your husband cooks. And there were four words that if I hadn't spoken to you so much, I don't know that I would have known what you were saying.

Jennifer Smith, CDE 1:11:05
Oh, really?

Scott Benner 1:11:06
No, that's right. I said water a couple of times in here. So everybody who's not from Philly is like, What is wrong with this guy, thinking I'm having a stroke, probably. Anyway, I really hope this was valuable. I know, it's not possible for us to cover everything. But the goal was for you to be the person who's in some way supporting someone with Type One Diabetes, or once to understand better. And I hope that by listening to this, you have a better understanding, I think you will.

Jennifer Smith, CDE 1:11:34
And also know that you are really important in terms of the person's like feelings about things and that that background support piece, you're a really important part of that as long as you understand things in the way that you need in order to provide that support. So

Scott Benner 1:11:52
I think that in the last thing, I think I want to say is that as my dog barks, that you don't want to separate yourself from a person's life because you're scared of their thing. Like that hurts like it might because I talked about co parenting earlier and spouses who aren't as involved, I believe, sometimes they just don't want to mess up. So they step back, but you end up alienating the person with diabetes and stranding the person who's trying to help them. And and I know, it's a lot to figure out, but you could like Trust me, I know, as you're listening, you don't know me. But I'm, there's nothing special about me and I understand diabetes really well. And everything I know about it. And Jenny knows about it, we put into those pro tip episodes. So if you're just a dad or a mom, or you know who's like, I don't want to get involved, because I'll mess it up. You know, you're doing other things that I think you don't mean to be doing in your relationships. And if you understood it better, I think you could do better, but hell yeah, I really would. Anyway, I could keep talking about this forever. So let's just stop. Jenny, thank you very much for doing this with me. Of course. This is usually the place where I thank the sponsors and the guests, but instead, thank you for listening. Thank you for wanting to know more about type one diabetes, for spending the time to try to learn. If you have more questions, you can look for episodes of the show called defining diabetes, or other diabetes pro tip episodes. Just look right there in your podcast player and check it out. If you're looking for a place to pick around even a little further, there's a blog at Juicebox podcast.com. Thanks so much to Omni pod Dexcom touched by type one, the Contour Next One blood glucose meter. Lily's chocolates, g vote glucagon T one D exchange. I think that's it. That's all the sponsors we have. It's a lot of sponsors. Thank you for being sponsors. Seriously. Get a free no obligation demo of the AMI pod to blend in so tubulin tubeless insulin pump at my omnipod.com forward slash juice box. Their demo is absolutely free and has zero obligation. Learn more about the Dexcom g six continuous glucose monitor@dexcom.com forward slash juice box. Get what I think is the best blood glucose meter on the planet at Contour Next one.com forward slash juice box. lend your voice to insanely incredible Diabetes Research. T one d exchange.org. forward slash juice box. You want to pre mixed pre filled glucagon. It even comes in a hypo pen. It's amazing Jeeva glucagon.com forward slash juice box no more mixing up your glucagon payable and Lily's chocolates. Make some great chocolate with far less sugar in it than you expect. Their ads will begin in the second half of 2020 and they will be accompanied by a savings coupon so you can try some lilies and save some money. That's coming soon. Check out my absolutely favorite diabetes organization at touched by type one.org. I know this episode didn't quite fit in with the other diabetes pro tip episodes, but I do think this is the place to put it. As I think about everyone learning about their type one, at some point part of it becomes talking to other people about type one diabetes. So this is where this belongs. Thanks so much for listening. I'll see you soon.

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#370 Wee In a Cup

That's Australian for Pee

Allison is the mother of a young type 1 and she's brought a few diabetes topics to talk about.

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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 0:02
Hello and welcome to Episode 370 of the Juicebox Podcast. Today's episode is with Tiff and TIFF is from Australia. Tiff has so much what I call good energy. It may actually be more than a person is allowed to have inside of them. But she has trouble holding it all in a lot of it comes out while she's while she's talking, which was just 100% delightful. This was one of those conversations where because of the timezone change, I think it was the middle of the night while TIFF was recording and I was early in the morning. It's I don't know how to describe it exactly. But she's terrific. And this episode is a massive amount of fun. Her accent if you aren't from Australia, it'll take a few minutes, but you'll settle into it and start hearing her really well. I mean, you got used to my accent. 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. or becoming bold with insulin. I don't think there's much left to say except maybe perhaps Gird your loins. This is TIFF.

Tiffany 1:26
I wrote these things to you and I never actually remember what I wrote because I'm sure I just write about going on a trip to Europe in America, but I just talk about, I didn't know what I was that I was going to talk about.

Scott Benner 1:38
So Tiffany, I'm not gonna answer you until after you introduce yourself. Go ahead.

Tiffany 1:43
Okay.

No worries.

Scott Benner 1:48
This episode of The Juicebox Podcast is sponsored by Omni pod makers of the tubeless insulin pump that my daughter has been wearing, since she was four years old. And by the dexcom g six continuous glucose monitor, find out more about the dexcom G six@dexcom.com forward slash juice box. And you can get a free no obligation demo of the Omni pod tubeless insulin pump sent right to your home by going to my Omni pod.com forward slash juice box. Would you like to help support Type One Diabetes Research and support the podcast at the same time? Well, the T one D exchange is looking for you if you're a United States citizen and have type one diabetes, or the parent of a child who is a United States citizen who has type one diabetes, go to T one d exchange.org. Ford slash juice box. I just did this the other day It took about seven minutes, I answered some fairly basic questions about Arden's type one diabetes. And now her information is being used to make advancements and improvements for people with type one. This is completely anonymous, 100% HIPAA compliant, and 1,000,000%. A great thing to do. T one d exchange.org. forward slash juicebox. Add your voice

Tiffany 3:13
on key on in Australia. I live in wangaratta. And I will I've got type one diabetes. But that's not all of me. I'm also a parent.

Scott Benner 3:23
Oh, very nice. How many kids?

Unknown Speaker 3:25
I've got two children.

Unknown Speaker 3:27
They're two and three. You're just getting started Good for you.

Scott Benner 3:31
I allowed their father to stay in the home. We're all together. You didn't tell us yet?

Unknown Speaker 3:37
Yeah, yeah, he's still there. Yeah.

Scott Benner 3:41
Well, he's on a short leash, let's just say that. I'm sure he'll do something incredibly wrong soon, you'll be very angry with him. But now.

Tiffany 3:50
daily, daily,

Scott Benner 3:51
daily, right. So tip, I'm going to I'm going to totally leave in what you said before you introduce yourself because because of our geography, and it is, you know, 10am where I'm at and midnight, where you are, it's been difficult, obviously, to get to get something set up. And more so than just the geography of us getting our timezone straight enough to make this recording. You and I have like going back and forth a number of times. And you know, like almost had it happen. It was supposed to be yesterday you It was so great. You sent me you sent me a message yesterday, you're like, is this happening in an hour or tomorrow? And I was like, well, it's supposed to happen in an hour. But if I'm being honest, I don't feel great. And if you want to do it tomorrow, we can do it tomorrow. So we're doing it today. So my point is, is we've gone back and forth a number of times. And then the first thing you said is I forget why I said I wanted to be on the podcast. And what I was going to tell you is that I forget why you're coming. Because it's gone back and forth. So many thoughts. So why don't we just pretend you're on because you have diabetes, and then we'll figure the rest of it out that sound okay. Yeah. So we'll dig down. You know, we'll start by by doing this. So, how old are you right now?

Tiffany 5:00
I'm, well actually it's my birthday. It was 15 minutes ago.

Scott Benner 5:06
petitions.

Unknown Speaker 5:08
I'm now 39 Happy birthday.

Tiffany 5:11
Yeah. Nearly 40 Oh my god. Thank you very much. Absolutely.

Scott Benner 5:16
That's exciting. It really is. So you're it's your birthday, you turned 39 years old. But how old? were you when you were diagnosed with type one?

Tiffany 5:24
I was 11. It was in. I think it was July. It was a diet. It was Earth Day in July. So I mean, if there's a day if it's I don't know if national thing or for the International thing. I've heard of it. Okay, yeah.

Scott Benner 5:40
So 2131 then we're gonna go 3230 330-435-3637 just 33. So 1828 28 years sounds like 28 years, right?

Tiffany 5:50
That's right. Yep. All right.

Scott Benner 5:52
And that that math works in Australia or in America or anywhere?

Tiffany 5:57
I think matters are pretty much the same a worldwide isn't it?

Scott Benner 6:01
I've heard it's pretty universal. Yeah. I mean, I haven't been everywhere at TIFF, but my understanding is that two plus two pretty much equals four everywhere. So 11 years old in Australia. You're outside, you're writing a wallaby. Your mom calls you what happens next?

Tiffany 6:21
Yeah, so, um, I was at school, I was probably that probably took about two weeks for it to develop. And we don't have Wallabies running around the Main Street. It's nothing like that. Although I did go to school in a very small town called queenscliff, which is on the coast of Victoria, down the bottom of Australia. And it was sorry, my cats running around. And, and I'd been drinking heaps and heaps of water. Like I hate water. Back when I was a kid. If you gave me what I'd be like, Hell, no, I want coke or cardio or orange juice. And so mom knew something was up because I was drinking water. And I hate water. And I was drinking an entire bottle of water for school that I was drinking an entire bottle of water before lunch at school. And I drink a whole whole bottle at lunchtime. And then I come as soon as I finish school, I'd go back to my Nana's house because my mom worked full time. Right. And on I would drink another entire bottle of water at my grandma's house. Yeah, and I guess I'd go to the toilet numerous times during the night.

Scott Benner 7:35
And it went on for about two weeks, weeks. And so I just want to before we move forward after the water drinking, I want to say that when your cat ran around just now if you would have just said Oh, I'm so sorry. My pet wallaby took my attention away. I really would have been delighted but that's okay. It's not. It's not up to you to make the comedy. So anyway, we so so okay, a ton of water drinking not normal for you. And that was enough to make your mom go. Something's wrong with her.

Tiffany 8:04
Yeah, but he had to wait till Friday because he wanted a long weekend and he didn't want to get time or have to have time off work. And he absolutely had to.

Scott Benner 8:11
Oh, okay.

Tiffany 8:13
He waited till Friday.

Scott Benner 8:15
to like, Look, there's something really wrong with her. But we cannot deal with it on a Wednesday. I just like you need to Did anyone pull you aside and grabbed me by the shoulders a good tip. Listen, honey, you need to not die until Friday when we can go to the doctor. And this wasn't because the doctor is on some Safari truck from your house. It's just that your parents fans just wanted to get to the weekend make it easier. I understand this.

Tiffany 8:39
Yeah. Cuz you know, you'd rather dealing with a problem on Friday and then have the weekend to deal with it as well. If in case it's a sickness, and then go to work on Monday and everything, everyone's all good.

Scott Benner 8:48
I like it. So So our plan is is to manage is to diagnose, treat, learn to manage and get back to life in about 72 hours. I like the I like the upside of this, but it's very, it's an energetic idea for you. They're like, we can get this done. So she you're off to the doctor, is it just as easy as like, hey, I've been drinking a lot of water and they say you have diabetes? Or how does that process go? Do you remember? Yeah.

Tiffany 9:14
So yeah, it was 1991. And I do quite distinctly remember because my mom would always be like, you're going to have to go to the toilet before we leave the house. So I went to the toilet. And we go to the doctors and I was pretty much we sat down didn't I don't even remember. I think I sat down. I just went straight into the doctor's room. And he said, Okay, I know you do away in a cup. And I said I just went to the toilet because my mom tells me I've got to and she says okay, well I've got this little machine here. She says, I've got to take some blood. Just put your finger out and I'm just like, okay, no worries. And that was my first blood test.

Scott Benner 9:49
Yeah. Well, and you've named the episode Wait a cup. So you're all set. I really, you guys do all the work. It's true. So he a little finger stick you You remember what you were? Do you remember the feeling in the room when it happened?

Tiffany 10:03
I was just sitting there going, what the hell? You know, maybe they got to do this so that they can see what's wrong with me, you know. And I can go back to I can go back to school because I was ready for school because it was birthday. And I had my beautiful picture that I'd drawn during the week that I wanted to take to school and display and show everyone I was dressed in green. Because it was, you know, this is gonna just be like, this will be over by 930 and I'll be at school, but can it all be good?

Scott Benner 10:32
Because in so in your life at this point, the only real like thing that's going on for you, it's just the, like, an incessant thirst. There's nothing else happening that's got you feel I don't feel well.

Tiffany 10:43
nigh and like, I mean, I've lost weight. But like, my dad tells me now that I had gone. Like I look like, I look very, very skinny and my little my face, he could feel the bones in my face. Um, which wasn't normal for me because I was chubby kid. I put

the weight back on straightaway after I got diagnosed anyway, but you know,

Scott Benner 11:04
listen, I just looked at myself in a reflection. I thought there are bones in your face. How would I even be able to tell that under my chin or my cheeks? No. So you were pretty gone. And it's funny. He he knew. It's funny, because I didn't know when I looked at Arden until until she put a couple of pounds back on. And then I looked at a picture from the week before and thought, Wow, how did I not recognize that? You know?

Tiffany 11:28
Yeah, yeah. Well, my mom, for the wife of her would never find anything like that, because my mom was too busy dealing with everything else.

Scott Benner 11:38
So she's just a busy. Do you have other siblings?

Tiffany 11:41
I've got one brother who's five years older than me.

Scott Benner 11:45
And he kept her busy.

Tiffany 11:48
Yeah, and he like key worked. So he was always he worked full time. My dad worked full time. My dad was an interstate truck driver. So I was basically, I'd go to work with my mom in the morning. And I'd go to school. And I'd say, Mom before I went to school, and then I'd see mom, when she picked me up after work, we'd go home had dinner, and I'd go to bed. So I saw my mom probably, I don't know, four or five, four hours a day.

Scott Benner 12:14
Your parents weren't looking for other stuff to do is what you're telling me?

Tiffany 12:17
No, I

Scott Benner 12:19
was busy enough. Right? So

Tiffany 12:21
yeah, that would kind of get in life.

Scott Benner 12:24
I understand. You start out 91 I'm assuming they gave you just was it needles or pens? or How did you start?

Tiffany 12:32
It was just um, just pin so No, it wasn't. It was in there. We had damn syringes. Okay, back then, and the big, lovely enqueuing vials. And to learn how to draw the intent out of the vial, so I could have my injections.

Scott Benner 12:50
So you're starting, you're starting at just at go, right? There's no, you have no knowledge about diabetes whatsoever. And so you're starting with just here's how you get out of the vial. Now you're gonna stick into your arm, you know, or your belly or wherever you're gonna put this did your parents become involved in, like the process of day to day management? Or was it pretty much on you right away?

Tiffany 13:12
Um, my mother. She was in shock. He didn't understand she did not like she couldn't deal with it. And so I went straight to hospital because as soon as the doctor took my reading, I think it was in the 30s. Like, in Australia, we use a different measurement as well.

So I was 32.5

millimeters per mega later or something. And he's desolated. So your measurement for lack, I think it might be about 500. I'd like

Scott Benner 13:45
to get my my graph up right now for this conversation. I have one that I like to use in this situation here. Let's see. But so you were you were plenty high enough. But but you really only saw the the thirst for a couple of weeks. Right?

Tiffany 14:03
Yeah, yeah, it happened pretty quickly. It wasn't something that

was going for months and months and months. Like some people.

Scott Benner 14:11
Yeah, yeah. Did you need insulin right away? Or was it were you in a honeymoon situation where it was kind of like, sometimes you needed it? Sometimes you didn't?

Tiffany 14:22
It was straightaway. I went from from going to into like, I couldn't not have insulin. Okay.

Scott Benner 14:30
Okay. Yeah. Okay. It's funny, because I talked to some people now who find it so early. You don't mean like so early? Yeah. They can't even use insulin properly for a while because even having any kind of basal insulin running ends up being too much. Central.

Unknown Speaker 14:45
Yeah.

Tiffany 14:49
I'm back in 1991. I don't think they even had the testing. I do remember at some point black I must have been in high school and my parents went and had their very first blood test to see Am I brah I should also mention my brother isn't my brother. He's actually adopted. So we are blood relatives, but we're not actually brother and sister. So I do refer to him a lot. And I grew up with him in the same house. calling my mom and dad mom and dad, but they just blood relative but but just blood. Not mom and dad, by parent teacher.

Scott Benner 15:27
All right, hold on. You got me on that one. I'm going to start over. So you have a mom and a dad in the house. Dad's a truck driver. Mom's there. Both of those people made you your dad. Yes. Okay. And then the your brother who was five years older than you? Was he a half brother from your father from your mother? nor my not at all? No. He's my mom's sister's fan. Mom's sister's son took him in by the dogs. Yes.

Tiffany 15:52
Yeah, essentially.

Scott Benner 15:56
Yeah. And he's still and he's a blood relatives still because he's your mom's sister son. Yeah. Okay. Thank God, we went through that, because your initial Expo explanation made me think that you had that that cat had had module and you were you're a rabbit at this point. And you didn't know what you were saying? Because you were like, he's my brother. But he's not my brother. But he's blood related. I was like, hold on a second. That doesn't make any sense. But I

Tiffany 16:21
found it to be interesting situation. But I I grew up knowing that he was my brother because he's my mom, mom, mom and dad, but he's also my cousin. So I like his brothers and sisters would visit us. But they the heath brothers and sisters. They're not mine. Because he's my cousin. But he's my brother because we grew up together. We got he was there before I was born. He was like the first. Yeah, he froze. Yeah, he's

Scott Benner 16:50
such a big smile on my face, because there's a part of me that wants to take those last 20 words and make them the title of the episode. But that won't happen. Don't worry, but I completely. Tiff. Oddly, I completely agree. I understand exactly what you're saying. And please keep in mind, it's late at night for TIFF. Okay, so. Okay, so you grew up having a brotherly sisterly feeling towards him because he was there. I have to ask, even though I almost I'm upset at myself for wanting to continue with us. But why did he live with you, but his other brothers and sisters remained back with his parents?

Tiffany 17:25
Um, well, he's mom was very young when Chad and so he had one son first. And he was I think 15 or so. And my grandfather made her give him up. And they've only just been reunited last year. So that was that he's net 45. And Mike, then she had my brother. And her partner at the time, was then killed tragically in a fire. I think I think that was the he's dead, hot. And I they've all got different dads. Anyway, something happened to him. And he wasn't led to keep him either, because my grandfather wouldn't let her and she wanted to have a life because she was she wasn't even 20. So she just went, you know,

Scott Benner 18:08
there's part of me that doesn't even want to talk about diabetes anymore. It's it's fascinating. Do you have any idea what kind of fire was in the home? Or was he a firefighter?

Tiffany 18:18
It was not within the home he had. He was fica. He was fica and he the fleet smoking? Tiffany?

Scott Benner 18:27
How many do you have? Like, do we even need to talk about the diabetes? Do you have like 1000 other great stories? Is this an Australian thing? I need to know the problem? Let's see you get caught on that like that. He got water all around you. It must make you a little crazy at some point. Like you know, because really, without a plane, you're stuck there. You can't try from Australia. Okay, how do you how did you find growing up with diabetes? Was it something that bothered you? Or were you pretty just kind of chill about it? What was your overall, you know, 11 to graduating from high school kind of experience. Okay, let's just take a quick break. Tiff has got like I said a ton of good energy and she has not yet begun to talk. So just need a second here. Right? Well, we'll collect ourselves and get ready to keep going. While we do that, let's talk about what I consider to be the gold standard of Type One Diabetes Care, dex calm, g six continuous glucose monitor and the Omni pod to boost insulin pump. Let's start with the Omni pod because it's easy. It's an insulin pump. It's tubeless it's small and compact, easy to hide below your clothing or you can wear out and let everybody see it if you want to. It's completely flexible. And flexibility is what you need when you're managing type one. You're going to have the flexibility to bave without Taking off your pump to swim to play sports with other people, if they ever let us do that, again, to go outside for a run to do everything that everyone does in life, except you get to do it without being connected to a bunch of tubing or having to take off your pump and watch your blood sugar shoot up because you don't have insulin. You just get to keep the Omni pod on. It's small, it's tubeless. It's easy. And they'll send you a free, no obligation demo. So you don't even have to take my word for it, you can try for yourself. My omnipod.com forward slash juice box, take you a couple of seconds to put in the information they need. And by they I mean on the pod and they'll send you off right in the mail and get you going with that free no obligation demo. It's well worth your time. Now the Dexcom g six continuous glucose monitor. This is another thing that I don't know how I don't know what I'd be doing without it. showing my daughter's blood sugar, speed and direction without a finger stick. That in itself is just stunning. Arden's sleeping right now it's early in the morning. Let me tell you something right now, her blood sugar is 101. As a matter of fact, I'm helping a young man named Joe right now and Joe's blood sugar's 111 and Arden's friend biani, her blood sugar 70, I can see all of that on my cell phone, right here holding it in my iPhone, if I had an Android, I could do the same thing. And you could as well, you could see the direction and speed of a loved one's blood sugar on your device. More importantly, you could share that information with up to 10 people say you're the one wearing it. And adult with Type One Diabetes, you just want. I don't know your partner to know that's doable as well. This thing is going to give you alerts and alarms that you get to decide on to let you know when your blood sugar's leaving the range that you've set ardens ranges from 70 to 120. She never gets too low or too high without us knowing that it's happening so that we can make good well considered decisions about insulin and carbohydrates to keep her from bouncing all over the place. So sure the Dexcom is great for safety and sure to wake you up in the middle of the night if you get low. But there's so much more than a little do. Find out more about those things@dexcom.com forward slash juice box. While you're there, go to my omnipod.com forward slash juice box. Get yourself a demo pod. And just why don't you just make it a trifecta T one d exchange.org. forward slash juice box. You can help improve knowledge of Type One Diabetes help accelerate the discovery and development of new treatments and generate evidence to support policy and insurance coverage changes that can and will help people living with Type One Diabetes. It's completely anonymous. totally safe. Hundred percent HIPAA compliant. T one d exchange.org. forward slash juicebox. All these links are in your show notes at Juicebox. podcast.com. Alright, Tiffany is about to take off like a rocket. So get ready. But how did you find growing up with diabetes?

Tiffany 23:16
Yeah, so yeah, my mom, he couldn't deal with it. She couldn't handle halfway through. I stayed in hospital until the Friday the next week. And my mom just couldn't deal with it. And I, I was in there the first day, so I'd been an emergency. And then I went up to the ward, and a nurse comes up like in emergency other kind of lab and emergency. But when I was in the ward, I distinctly remember a meal. And it must have been lunch and the nurse comes up. And she says, Well, I've got to give you insurance. And I said to her, really now because I don't like needles. And she says to me, Well, unfortunately, because you've got type one diabetes, you have to have needles before you have anything to eat, you're gonna have to a couple of times a day from now on. You know, it might be once it might be twice because back then there was only I don't even remember what was it called predefine. And something else? I don't know. I can't remember because it was just it wasn't that wasn't what I need to know, there was more important things to know the names of insurance, I just need to know, which was the cloudy one, which one was the clear one, cloudy with long acting, and clear was short acting. But then I didn't make them anyway, I had mixed atod which was a mixture of both of them. Anyway, that's fine.

Scott Benner 24:31
But that's the first time that's the first time someone said it to you like you they were there with your food and the nurse was like, hey, you're gonna get injections every time before you eat from now on and that you hadn't heard that prior to that moment?

Tiffany 24:43
No, no, because I'm they might be they must have given me an injection in emergency because otherwise I would have ended up I'm assuming like going back now and reading other people's stories. I should have ended up in ICU but I didn't. So obviously I wasn't in DK or I Was that they dealt with it differently back in 1991? I've got no idea.

Scott Benner 25:04
No, of course not. Yeah. I mean, who knows how why what happens happens, right?

Tiffany 25:08
Yeah, that I was on after after I left the hospital anyway, I was on mix the tide and I took two injections a day. But at this thinking conversation with the nurse and she's comes up. You've got to have an instrument before you can eight. And I'm like hell no. And she's like, well, I've got to do it too. Yeah. And I said, Okay, I said, you do your deal. I said, you can do this one. And then next one, I'm doing myself because you are not touching me ever again with a needle? And that was it.

Scott Benner 25:37
You wanted it in your control? Yes,

Tiffany 25:39
yes. And that was I took control of the needle. And because I knew if I did it, I could do it the way I liked. And no one else would hurt me with a needle.

Scott Benner 25:49
I think that's a that's a sound, that sound idea and, and psychologically makes a lot of sense to like, you know, if somebody is going to do this, it needs to be me. I'll figure out a way to do it. It'll be best for me. And that way, nobody else can screw up and make it hurt. No.

Tiffany 26:04
Um, but yeah. And yeah, if I was in hospital for a week, and my mom would come in every day, he mother taking care of that he must have taken time off work, because I do know that she came in during the day. And she come in, and he'd always burst that bawling. And then one time, the nurse comes up and says, okay, so you'd met your mom needs to learn how to give you injections. And I'm like, no way.

Scott Benner 26:26
Listen, that lady to a point where she's not crying before we give her the needle, right?

Tiffany 26:32
He probably wasn't crying by the end, but he was just, he just was traumatized by the whole event. And so my mom's just like, Okay, I've got to do this. And I'm like, he's not touching me with a needle. And they talked me into it. And I'm just like, You know why? Because I, I was terrified. I would if I had to have bloods taken, I would look away. I'd stare at the wall and I'd sing songs to myself, I'd make up stories in my head, because I don't like even now, when I go to pathology. I just, I can't watch I look at the wall. I take my phone, I play by my phone while I do it, because I just don't want to see someone else sticking a needle in me. Because you

Scott Benner 27:09
don't have that reaction. Even now, like as an adult when you're doing it, though.

Tiffany 27:13
You know it but I'm fine. Because it's me doing it. So I know exactly. And I've got to look at what I'm doing. But other people Oh, even on TV. I can't handle watching other people. One person give another person an injection, but I can watch someone give themselves an injection. That's fine. Okay, that's interesting.

Scott Benner 27:28
No, right. Really is interesting. All right. So like, do you are you still injecting now or how do you handle like getting your insulin today?

Tiffany 27:37
Oh, yeah, I was I was injecting up until, um, my I was pregnant with my second, my little boy. And so I got my pump. Or he, I must have been four or five months pregnant with him. So I've had I've been pumping for two and a half years, maybe nearly three.

Scott Benner 27:56
That's crazy. So you injected for over 25 years? Yeah, I did. Yeah. And how did you? What about glucose monitors? Do you guys I know you? Yeah. You have one? Do you have it?

Tiffany 28:07
We thought Yep, we've got all different ones. We've got the same ones. As you guys have. We actually got the lab right before you guys did. So that's pretty cool. I saw that. Yeah.

Unknown Speaker 28:15
And you use what are you using?

Tiffany 28:18
I'm currently using I use a Medtronic pump. I've got the 640 or as you guys call it a 630. Okay. And I use the the meter that goes with it, which is a con context contour next link. Excellent.

Scott Benner 28:35
Okay. Yeah. And how do you like I mean, you're it's interesting because you did you did injection actually, you're really good person to talk about with us. So talk to about this because you injected for a really long time. Would you call your time injecting like successful for your health? You were pretty you were doing well.

Tiffany 28:53
Yeah. So before I fell pregnant with my first I was taking taking taking Lantus and Nova rapid. And on my, my, my hike bi one C was 5.9. No objections. Yeah, so I was pretty good. And I'd also just done a course called Daphne. I think you guys I'm sure you guys have it over there. It's dose judgment phenomena. That dose adjustment for normal eating. And, as in Australia is called audacity because we're in AWS, obviously. But it's the same thing. And it's a course that was developed in Germany, by doctors who saw the need to help diabetics to understand how to adjust their own each one rather than having to wait three months for every doctor's visit, to help their doctor to help them adjust the internet again. It's like how we came up with this practice and you used it really successfully. Can you describe it a little bit Yeah, so it's just, um, you know, knowing how to carb count correctly, it's a five day course. So you learn, like how to carb count correctly, you do seek day management. All the meals are provided while you do the course. And you just come into the air of the way you're doing the course every day. And they have snacks and meals. And I have regular food. I don't have like, you know, sugar free. It's like, you know, we have Tim Tams. And we've got, yes, Tim Tams. We've got, you know, jelly snakes, and anything you want to eat,

Scott Benner 30:34
biscuits, all different kinds of biscuits, but everything's got a carb count on it. So that we have to figure out how to do it without the assistance of the diabetes educator and the dietician who are running the course. Well, so people were so kind of frozen in the idea that I will live my life for these three months. And then any adjustments that have to be made to my insulin, or the way I'm managing things doesn't happen until I get back to the doctor again. And this and this was the idea of No, you could do this, you could make these adjustments on your own.

Tiffany 31:05
Yeah, well, I was already kind of doing it. But I didn't do it. I was obviously I was doing it really successfully. Because before I did all that mean, my fault, my height, Bo and C was also 5.9. I did it probably six months before I fell pregnant. Um, and I so I'd been doing that I hadn't been very successful job because I would have like major hypose and stuff, but never anything where I went unconscious, except like many years before that. But I did kind of like look at things and go, that doesn't look like you know, two portions that looks like it could be like a bit more or a bit less. And so I'd have a bit more a bit within keulen. That's and you have to

Scott Benner 31:44
I think personally, I mean, obviously you listen to the podcast, I think you have to make your adjustments like that. By the way Phil fell pregnant is such a wonderful phrase. Because here you might say that you fell ill but like that the idea of fell is like, you know, you've been overwhelmed by something unpleasant. And to say like, fell pregnant. It's just it delights me to no end. I really am.

Tiffany 32:10
Okay, I became pregnant.

Scott Benner 32:13
I just please, I'm not I'm not correcting you. I'm telling you. You're making me happy. I just every time you say it, I'm like that's I also enjoy. What is that? Something like you guys talk about going to the hospital. But you don't say go to the hospital. You say?

Tiffany 32:29
No. Yeah.

Scott Benner 32:29
Yeah. Isn't that funny? You don't even know what you say. It's hilarious. Oh, anyway, fell pregnant. You've just made my whole day as I'm saying. So you're five nine. You're doing fantastic. You What made you take the course by the way, even though you were five nine? Did you just think I could do better at this or did something they made you do?

Tiffany 32:46
Um, because well, I before I did the Daphne course I had been I had the same the same endocrinologist. So the same endo for from the time I was diagnosed for 20 years. And then just before my 20 year anniversary, he says to me, oh, by the way, I'm going to move to Queensland. And you're going to be saying my ofada you've been because I sees our solder occasionally. And then he just popped in. He's gonna say this other guy called Adam. And I'm just like, wow. And so I had to make an appointment for a new guy. And back then as well I lived with, I'd have to drive 40 minutes to go see my doctor. And there were other doctors who were closer to me and I just thought you know what, stop him. I'm gonna find a new endo. But I never did. So I was just going to the GP I'd get new skin get prescriptions for more in killin the doctor might occasionally get me to do a high DPI one C and that would be and so I just got a walk in clinic and do it that way. So I didn't have an endo for about four years. And then I was in Melbourne by that point. And I moved to moved up the top end of that the top of Victoria to bend a little town called vanilla, which is the wind grad where I currently live. And I get there and I thought I need to find a doctor surgery and I found one and I go there and the donor GP says to me, Oh, you've got type one. He says okay, you can go see this guy called Robert. He's German, but he's really nice. And I'm like, okay, so I say Robert, and he's not actually a an endo. He's called a diabetes specialist because in Germany, every single doctor I don't know this is what I've heard. So I'm just I'm just is he sighs so it could be true could not I don't know. But apparently allegedly, every single doctor in Germany has to do an entire class two semester course unit or whatever on type one diabetes. So the Germans they've got something gone You know, they think and type one diabetes. We've got to do something about this obviously because I came up with a with some that me and you They decided, you know, we've got we've got to learn about type one diabetes. So they've got something going on there. And I go see him and he fantastic thing, and this is this guy's really good. And he says to me, you've got to do this course. And I'm like, do I have to do it? Because

Unknown Speaker 35:17
I feel like I'm doing all right.

Tiffany 35:20
It's fantastic. He says, but this call seriously how, like, you actually you actually know the carbs that you're eating? And I'm like, Yeah, kinda like the last time I saw a dietitian was probably like, I don't know, 10 years ago, but you know, whatever. And off I go to, to do this course. And that was like a turning point. I'm like, I have to understand how to look at a recipe. And like, I love biking. So now I get a recipe and I can figure out the carb count, I can divide it up and know exactly how many carbs in every single portion of like a slice or cupcakes or a cake. But just by weighing it now and I never used to do that uses go. I Yeah, that looks like you know, it could be 50 grams of carbs. But you know, whatever. Just, you know, just winging it.

Scott Benner 36:07
Have you actually with Daphne, have you actually improved on your five? Nine?

Tiffany 36:13
No, I haven't, say five nights really

Scott Benner 36:15
good. Like, I don't know how you're doing better than five nine. But But. But it gives you more comfort. Like you feel more kind of in control. You're not guessing you feel like that?

Tiffany 36:26
Yes, it gives me and then because I need the cause I was like, Huh, cuz I said I'm terrified of needles. So the pump freaked me out because I didn't want to have a needle inside me all the time. That's like, the only reason I was against getting a pump for so long. And get in on, you know, cruising along. And Mike Beyonce went up to bat was because I was pregnant, as I said, so it's 5.9. And then it went up. Because when you're pregnant, things happen. And things get harder to many Jen. I ended up at like, 6.2 by the time he was born.

Scott Benner 37:04
Well, it's not that's not a terrible I mean, that's not a terrible increase during a pregnancy for sure.

Unknown Speaker 37:09
Yeah, are they?

Scott Benner 37:11
So let me say something I cuz I'm gonna forget, because I am so just delighted, like listening to you. Like, I feel like this should just be your podcast, and I should just sit here. But I, but there's this one thing you brought up that I think bears like going over. So this happens to Arden a lot. You know, she used to obviously, she's had type one since she was two. And she'd go in and get her blood draws. And you know, she never flinched. And then one day, I don't know, she was like, eight, nine years old. And she was just up in the corner of the room, like, you know, like a cat trying to avoid water. And and, you know, trying to get away from the nurse who was like Arden, I don't understand what's going on. Like I've been drawing your blood for, you know, close to a decade like what what just happened, she just suddenly couldn't bring yourself to hold still for it. And she's gotten better over the years. But any time that comes up, even if it's at the dentist, you know, where I'm like look, Arden's going to be difficult to get numb, because she really does not like the needles, then the person will say, and this is I find this infuriating, and I try really hard to like educate them, like nicely away from it. They're like, but she has diabetes, she must be used to this. And I was like, why do you think getting stuck more makes a person who doesn't want to get stuck? Like just forget about that? You don't really forget about it because you do it more. Like if I said to you like there's I watch boxing some guys don't apparently mind if they get hit in the face, you hit me in the face once I'm very upset. And if you hit me in the face 50 times, I'm not going to be less upset by it. It's just a very strange idea to say to someone, but you should be used to this. And and so you have diabetes, you're not allowed to have a needle phobia, you're not allowed that, like that's just such an odd way of looking at it. And I think that does happen to a lot of people, they get that like, well, you're you have diabetes, so obviously you should just be okay with this. And you're not, you know, like it's just you're not, but it's it's really interesting about the pump idea that what you didn't like about a pump? was the idea that something would be inside of you constantly. How did you get over that?

Tiffany 39:21
I heard this thing called the eye port. Um, and I and also the Libra came out. So I I ordered a library online and it arrived and I put it on and it was like, I didn't like the sand that might because it goes could funk. The little sort of thing you got to use. And I didn't like that noise. So that was part of the problem with the pump as well because I knew you had to insert and using the little third thing is like good I don't have that noise. Anyway, I put the Libra on. I was like this is amazing. I like to sleep writing. So I'm looking I'm looking around like scanning myself constantly looking at my little meetup going. This is amazing. Oh lobby, why do not do this alien? I'm like, hang on, if I can do this, then that means maybe I can do a pump.

Scott Benner 40:07
And that's what that was your bridge to it then.

Tiffany 40:10
Yeah. And then I got this thing called an iPod because Medtronic do like free samples. Have you heard what an either an iPod on a human you

Scott Benner 40:18
know that you can inject without putting the needle in, right? Like it's this it's a port it's a port that you use, then you inject into the port instead of into your skin every time.

Tiffany 40:26
Yeah, so that was kind of like so I did the Brian in like, my date, my, my, What's the name? My diabetes guy, Rob. Rob, he says to me, sorry, I'm, I've just gone blank for a second. Then he says to me, I'm okay. Robert. He says, okay, Tiff. So, why don't you see how you go with this? And I'm like, okay, so he said, go visit my da next door. And so I go see her. He's also a type one diabetic. And she, she talks to me a little bit about it. And I'm just like, I'm terrified of the noise. And she's like, that's okay. She said, Oh, I'll show you how I'll do this one. And then you've got another one in the box. And you can do that later on if you want at home. So I put it he put in for me. And I didn't like the I 40 it was horrendous. It really irritated me. I just couldn't handle it. And then I figured out I don't like putting fights on my tummy. So that because that's where I put it. So I'm like, okay, that's that's a no go down. But anyway, and then I put the second one in. And I'm like, wasn't so bad. So I organized in Australia as well, you could have private health insurance to get pumps. So I organized by private health insurance. And my next visit. I said, Okay, yep, I'm ready to do this. And I said, oh, by the way, I'm also pregnant.

Unknown Speaker 41:45
I fell pregnant.

Tiffany 41:50
Completely didn't want to but anyway, they're only 17 months apart. I'm not planning anyway.

Scott Benner 41:58
I just won't let your children ever listen to this. I bet that's fine. What What happened? I we're gonna take a detour for a second. When did you go to a wedding and drink too much but what happened? Exactly like how did you stop defending your uterus from this falling into pregnancy?

Tiffany 42:19
I kid you forget you Don't you think it's like you? You know your tablet?

Scott Benner 42:27
It's that boy. Swear to God. I don't know what we're talking about. I'm having a great time.

Tiffany 42:32
And I'm, I'm very fertile, obviously. Because I yeah, I just I, before I had my first child, I had a miscarriage. And that didn't take very, very much effort. Either.

Unknown Speaker 42:44
Way to hold on the pregnancy or the miscarriage. What didn't take very much effort.

Tiffany 42:48
getting pregnant, getting pregnant in general.

Unknown Speaker 42:52
That's wonderful. You're wonderful. I'm so happy we're doing this.

Unknown Speaker 42:57
Hold on a second. I have to pull myself together. Give me

Scott Benner 43:01
Okay. All right. We're good. My favorite part so far is that Rob was German but it's okay. He's nice.

Tiffany 43:12
Oh, my JP was also Indian. He was amazing. And then he went and moved to bloody Melbourne did meet with family with him. So

Scott Benner 43:18
I love this guy tried to upgrade his life with no concern for you whatsoever.

Tiffany 43:23
It was like the best jPi ever had, because he he didn't try to try to take my diabetes away from him. You know, tell me that. You know, I'm silly because I'm doing this and that because what most of the JPEGs I ever saw did and yet anyway, he moved away.

Scott Benner 43:36
Yeah, but he gave you real freedom and and, and respect right. Not not freedom because he left you alone. But but like freedom and respect with your type one like he Yeah, yeah. I think that's it. That's really important. So yeah, so first curse him for leaving. Let's hope he felt he falls on something. Right?

Tiffany 43:57
Yeah. Anyway,

Scott Benner 43:58
anyway. Is your how involved or not involved? I want to get back you know what, hold on. Where do I want to go with this? I here's what here's what I'm gonna go with this. You're really interesting with like, I don't want it on my stomach. I don't like the way it clicks. I don't want to do that. Like that's real. That's sort of different stuff than you hear people talk about all the time. Do you have do you have that with other things? Like Are there other things in your life that like you don't like the way they feel or don't like they like when I go clothes shopping? If you watch me walk through a place with clothing. I'm touching everything constantly. Because if I don't like the way it feels, I wouldn't even care what it looked like.

Tiffany 44:40
Yeah, yeah. Yep, definitely. Yeah, that's me.

Scott Benner 44:42
Yeah. Have a little bit of that tactile thing going on. Because Because a port on your stomach's not okay, but you can put it somewhere else.

Unknown Speaker 44:49
Mm hmm. Yes. Okay. Interesting.

Scott Benner 44:52
You are very quirky. I like that. That's excellent. And but I think it's important to talk about because I don't think that for the people who that affects, I don't I think we talked about that quite enough, right? Like, yeah, that there's this great technology. But what if it just is in your head all the time where you can't take the clicking or the or the other stuff that comes with it, but you have been able to kind of overcome everything you found a way around most of your roadblocks, right?

Tiffany 45:18
Yeah, yeah. Yeah.

Scott Benner 45:20
And so would you tell other people to press on? Would you tell them to follow their heart? Like, where when something bothers them just give up? Or what do you think? What do you think ended up being the, I don't know the right path for you?

Tiffany 45:35
Well, it's more of a matter of just, you know, looking around, and just seeing what your options are like. So it took me 25 years, and then the Libra to go, I can do this thing now. Like, before, then it was it terrified the hell out of me. Um, and then yeah, the Libra was the turning point. It's just a matter of just, you know, seeing what's happening, keeping up with what's what's going on with the diabetes industry, the map for the companies that manage what we have to do what we can do to ourselves, and how we can manage our diabetes better. And they just might come up with something and you go, that's it. That's what's gonna help me to, you know, get control of my diabetes. Like, I don't think I've actually experienced burnout. Like I look back and I'm like, is that when I was in high school, I kind of went in whatever. But I still took my insulin and never stopped because I remembered what it felt like to constantly be thirsty, and to just feel disgusting all the time, from when I was 11. And I was just like, I don't want to do that again. That's interesting. I want to feel disgusting. And I've always had glasses. And I'm like, I don't want my eyesight to suffer. Because I can't say enough as it is like, I can drive. But if my eyesight gets worse, then I can't drive. I don't want to not Dr. Right, you might not be able to see.

Scott Benner 46:51
Yeah, I think that what you what I just took out of what you just said was that when you knew what it was like to feel, well, you knew what it was like to feel sick. And you were just trying to avoid feeling sick again, where I think that there's a possibility that when we diagnose young kids now and tell people like oh, it's okay, if your blood sugar's like 220 or, you know, 300 spikes fine. You are teaching that person's body to be to feel normal at that range. And there and that's, you know, that can be dangerous in itself to give you a normal feeling at a 250 blood sugar. Yeah, you know, is is a recipe for like a long term disaster really. So

Tiffany 47:31
yeah, yeah. Because I remember as a teenager having like my, my endo, he was quite old. Well, I thought he was old. Because he was bald.

He probably wasn't that

Scott Benner 47:44
old when you're a child. I agree with that. Yeah, that's fine. That's absolutely fine.

Tiffany 47:49
And he he would we would have arguments when I was in high school about my about what I was doing and how I was managing and stuff. And I remember like storming out of his office like this is asked my mom to stop coming. Like I didn't even know I my mother kept coming. Because, you know, she had no say in what was going on, because she didn't want to be involved. But she would always come to doctor's appointments. Anyway, so we would have arguments as soon as she stopped coming, it was like, This is my, this is my job. Now my mom is not here. That means I can tell him often I can tell him that he's been silly. And he's telling me that, you know, what he wants me to do is impossible. And like, you know, my HPA once they would be like in the sevens and he'd be like, you can do better than this. And I'm like, Look, this is what I've got to work with. If I can't do it with this, then I can't do it. Okay, I'm doing the best I can. Right.

Scott Benner 48:37
And by the way, did you notice my mom is not any help whatsoever? And so you know, I'm so I'm interested, if you've ever had a conversation with your mom about this, do you have any idea why she was disconnected from it? Or why she couldn't kind of dive in? Or did she? Did she fall asleep smoking in the fire? And you don't know, right? More? I don't know.

Tiffany 48:58
I've never actually spoken to her about it. But I just, I don't want to because when she asked me like he's he's got type two now he was diagnosed few years ago. And he says to me, also has the diabetes going and I'm like, good. He says, if you had any hypose and I'm like, I'm I'm thinking in my head Well, yeah, I had one yesterday but I'm not going to tell you that because you're going to freak out and I decide to are not so good. You know, I'm just you know, cruising along because if I tell her I've had a hypo even if it's only like, you know, a 3.9 or you know, like it just I'm just like 33.1 we should probably be like on I 55 5055 or so yeah. Yeah, he'd be like, oh my god you like I you I kind of like, you know, this is this happens man.

Scott Benner 49:45
You know what I'm trying to figure out because when we look at your like tactile stuff, like I don't like the way it sounds. I don't like the way it looks right. Because imagine like you said, I can't watch someone else. give someone else a needle, even on television, which by the way TIFF is regular Because you're not, right, because you're not actually there. And it's not really happening. And it's all fake and everything. But but because it gives you that feeling. My question is, I wonder if your mom doesn't have something similar? And I wonder if right if watching it happened to you didn't put her into a tailspin the way it does when you're watching an old rerun of er on Netflix. And so that's what I'm trying to. That's what I wonder. And please, I don't want you to, you know, I'm sure your mother's an older person. Now, you don't need to have an argument with her. But I was really interested to know if maybe that wasn't it, right. Maybe she didn't have her own kind of like issues and that was something she couldn't overcome. It's interesting.

Tiffany 50:39
Yeah, it is. It is actually that I've never thought of that, that that that does actually make sense. why he's so like, Yeah, he did. He was so disinterested in the whole thing. And oh, my goodness, the blood test machine when I was first diagnosed, yeah.

Scott Benner 50:55
Yeah, because TIF because by your explanation, she wasn't disinterested, and she's still not disinterested now because she's worried for you. You haven't? Yeah. Have you TIF like, how's the diabetes? You haven't been low? Have you? I'm worried that you're okay. So yeah, I mean, I've heard Listen, I've interviewed people who have we've outright set it sometimes. And sometimes it's gone unsaid rifle. Ooh, your parents just didn't care. And like, where they were just like, huh? Well, that's for you to worry about. Not me. Like that. Kind of. Yeah. Your mom wasn't there. Like she tried to come to the appointments. Right? Yeah. And, and she still cares now. I mean, how old is she now?

Tiffany 51:31
Um,

Scott Benner 51:35
she's still asking. She's asking you. So I think this is a I think if we dig down that's what's going on here. Does your dad have any going on? Does he Yeah, my

Tiffany 51:45
dad's cool. He he says to me, How you going with everything outside? Oh, yeah. So like I can I can be more open with my diabetes and with my dad because he's pleased with like, you know, these things happen. Whereas my mom's always about the, the other stuff. Just like my mom or dad, you know, like if I yeah, mom's mom's like, you know, if I had a car accident, maybe like, Oh, my God, the car and my dad to be like you okay? The car? Yeah. Yeah. Like you have to be like, you know, if you got your insurance up to date. What's that? My my

Scott Benner 52:17
mom, my arms falling off. Yes, yes. But have we told Allstate?

Unknown Speaker 52:22
Exactly, exactly. That's wonderful.

Scott Benner 52:24
Well, I think that I was just speaking, you know, it's so funny. I was just speaking about a mother's love yesterday on a phone call within Australia. It wasn't for this podcast, Australia would just be a place on a map to me. But instead it's not because this podcast is incredibly popular in Australia. So so I'm on the phone with a an Australian who lives in America. And we're talking about something. And we were talking about, like kind of the anxiety she was feeling around her kids blood sugar. So I was like, see that's like that moms. That's a that's that thing that's so wonderful. And yet sometimes it won't shut off. Like a mother's love like, right, like, like, you know, like, it's wonderful. Because there and it's so present even throughout your life. As you get older, your mom still feels that way about you. But at the same time, there's always this line where they don't seem to be able to like stop sometimes. And I was telling her that we were we had gone this past weekend, a few states away to watch my son play baseball. And it was the end. He's in college, but it was the day before a holiday. So he said can I just come home for the night. And then I'll go back to school the next day. And we thought that was great. We hadn't been around. He hadn't slept in the house in months. And we're like, that'd be wonderful. So you know, the kid poor kid gets up at 6am gets on a bus takes a two hour bus ride plays two baseball games, think gets in our car and is taking a two hour ride home. And he falls asleep. And his head is tilted to the side. And my wife says in the backseat, you know and she goes his head. And I'm like Kelly, he's 19 he's a strong as an ox, like he's fine like you like they just leave him there. He's asleep and he looks fine. And he's fine. Well, 15 minutes later, I see your hand come up from the backseat. I'm like, What are you doing? I'm trying to drive. Just his head can't stay like this. I'm like, Kelly, he's fine. Leave him alone. Right? But she couldn't have she could not overcome the feeling that that kid was uncomfortable. Like, yeah, you know? And so she starts nudging his head up and he wakes up he's like, what's what's happening? And I looked at her I went I told you to leave him alone. And so but there's something about I'm not kidding. Like I think there's something connected from women probably straight from your you know, straight from the moment you have them inside you until apparently till the very very end of their life for a lot of moms. She couldn't see him be uncomfortable. And I was like, He's fine. She she could and she's a bright person. It's not like she was confused by it. She just couldn't overwhelm that. So I'm interested very much in what was so powerful in your mom's had that she couldn't overwhelm To come help you with your diabetes, and I bet you it was something pretty strong. So that's Yeah, yeah, I could be 100% wrong. I'm just the guy on a podcast so I might be 100% wrong, but it seems that way as we're talking about.

Tiffany 55:12
Yeah, now he's he's very he Yeah, he's loving and stuff and he does he does worry a lot. Since I've also like, you know, the only blood like being a child by blood that she's

Scott Benner 55:26
gonna hold on to you. Yeah, your dad still just a guy she met like you're Yeah, you're her family right now. I understand. Yeah,

Unknown Speaker 55:32
exactly.

Scott Benner 55:36
Okay, so overall in, in Australia, what is it like? Like you have private insurance, which I'm still even through a number of episodes trying to understand a little bit. But but yet things don't cost a ton of money, though, right?

Tiffany 55:52
No, it's pretty good. We've got this game code ndss National Diabetes service game, and it's, it's funded by the government through taxes, and we pay quite a substantial amount less for supplies. And then if you've also got health care card, so if you're on a low income, or you or you're under certain age, you also get a discount an extra discount again on top. But that's nothing to do with private health. private health is only needed for pumps. But cgms full cost no matter what, except they've just changed government funding again for CGM. And now people who are women who are in preconception for six months, they can get CGM for free. women who are pregnant can get CGM for free. And when they're breastfeeding up until the baby is six months old from the due date for free j for it's free CGM and I can get anyone they want. Libra is still not on the cards though. I don't know why but everything else is subsidized. Now. Also if children are under 21 years old, they get free CGM. And anyone who is hyper went away This is only new, this whole this pregnancy one and the hyper one awareness. So if you're hyper aware, you have to have a healthcare card. But your hypo unawareness has to be very severe. And you have to had been hospitalized within the last 12 months. And you will also receive free funding CGM. Gotcha. So

Scott Benner 57:39
I think it sounds to me if I can have if I can have it six months, you call it preconception, which was fantastic. So six months before you're pregnant, right? Plus the nine months you're pregnant, six months, you're breastfeeding. If you just have a baby every 21 months, you can have CGM for free for the rest of your life.

Tiffany 57:57
Exactly. Yeah. But you've got you've got to be a woman that's gonna be thing like there are lots of men who are very upset about this. Now, the aim is that everyone gets sick in funding. But my issue like I could, up until they change, the legislature changed the legislation again, I was actually eligible to get free CGM, because I'm a low income earner. And I have had episodes I look but I haven't been hospitalized. I have episodes where I've been. I've been had a bad hypo. But that was last one was when I was pregnant with my first Hello was and she's three now. So I haven't been hospitalized. I've had an ambulance cold out. But I haven't been hospitalized because of a hypo. Which means I'm no longer eligible. What My issue is, I would like it if they could say instead of people getting free CGM, if everyone, anyone who wants can get a CGM at like half price or a quarter price, because that's how we do medications. Like it's not fair for one one Pacific group to get it for free. Why don't we all just get everyone just pays a little bit if everyone pays a little bit, then everyone the funding goes further. And everyone benefits rather than just these tiny little groups,

Scott Benner 59:12
right? Yeah, I listen that I look at college the way colleges paid for an American I think the same thing, like how can my son be in a class with a kid who's paying, you know, a few thousand dollars a year to go to the same school that other people are paying 10s of thousands of dollars? Like what if we all just kind of like found the middle ground, you know, exactly right. And that really would be valuable and especially for medical stuff. To say that you have to be sickly to get something that could be used preventatively Yeah, it just thinks you don't even you know,

Tiffany 59:45
yep, with with the this whole new hype, I want to win this thing and having to be hospitalized. This makes a lot of people there's quite a few people who have written on Facebook groups about the fact that this means that people are going to run Specifically low, get low, so they can pick you have to have a hospital visit before they're gonna run low. They're gonna get the ambulance come to their house, they're going to go to hospital. So they're gonna cause more strain in the healthcare system. And then free CGM because they want to say free CGM. That's it,

Scott Benner 1:00:16
and that stents gonna go wrong for somebody and somebody is gonna end up hurt. And exactly, yep, you're putting people in a very weird position.

Tiffany 1:00:23
And I also read a fantastic comment. It said, it's like bolting the doors to the table after the horse is left. And I'm like, that's, that's a really good analogy, because, like, wouldn't it be better off because like, my partner, he works away, half awake. And so I'm basically a single mom at home with two children by myself. Yeah. And it freaks me out like I've got, I can get a CGM occasionally when I can afford it, but most of the time, I'm just running off doing bgl. I don't have the CGM. Yeah. So it freaks me out that one day, my two and three year olds who have no idea how to use my phone, because I don't like them using it. And I don't want to teach them, you know, screentime stuff that they need to use my phone to play with games, you know, and they're gonna come, they're gonna wake up and come into my bedroom, and mommy's not gonna be white.

Scott Benner 1:01:14
And then they're not gonna know what to do and

Tiffany 1:01:16
fix me up, of course, and then because my partner at home, like, my parents live three hours away, they leave back in Melbourne, which is three hours from wangaratta. And they're not going to know, Nick not gonna know, because he's at work, like in an hour and a half away in New South Wales. Um, which is a sight above Victoria. And I'm going to be at home with these two children, and no one knows. And it freaks the hell out of me. So I'm hoping I've got a dog. I've got an appointment, say my, my D in a couple of weeks, and I'm thinking, oh, maybe, maybe just maybe they can like wrangle the paperwork so that I can just get it when I have to.

Unknown Speaker 1:01:53
Yeah, it's, I want to

Tiffany 1:01:54
do that thing. The other reason I do not want it, I would rather not have a CGM, because I don't like having the SAT to me. I think they're bulky. But you know, it's fantastic work. As I said, earlier, I was in hospital last week. And I, my friend who just had a baby, she's breastfeeding, I messaged her, and I said, I need your help, can you please help me and she came around to my place. And she gave me three of shgs because she got them for free. cuz she's breastfeeding shoes. And I'm like, I only wanted one. I didn't want three. And he's like to take him, okay. He says, Don't worry, he forgot them for six months, you can have a couple I doesn't bother me. Like, you are a lifesaver.

Scott Benner 1:02:32
And that's wonderful for to do. And at the same time, it does illustrate like this weird dance that that these rules push people into having, you know, she's breastfeeding. So she gets some so she gives some to you because you're scared. And you can't get them because you haven't had a hypo that put you in the hospital. But at some point she's going to run out. And then you know, it's just, I don't know, the idea of medical insurance. Everywhere I hear the conversation. It's just very fun. Yeah.

Tiffany 1:03:02
And anyway, but my da, she's really cool. She just had it. And we've got an election coming up soon. And she just spoke to the local federal Member of Parliament who's up for who's up for a nomination. And he said, This is what I want to do. And he just he told you what I just did about having everyone pay a smaller cost, a smaller cost amount. And then everyone can benefit rather than just having these tiny groups that don't necessarily like it's not, it's going to benefit them, but wouldn't be better if everyone had a little bit. Right.

Scott Benner 1:03:33
Yeah. Yeah. I mean, and no, and I understand there are going to always be people who can't afford it at all, and that's fine. But there's, you know, listen, free is nice, but if you even could throw in 20 or $50 towards it, and that would keep somebody like you from having to pay like you know, 75% could get you down to 50%. Like there's got to be a way where everybody sort of shoulders the burden a little bit,

Tiffany 1:03:58
I think come back and get subscriptions. But I think a box of a one box of five in light sensors from Medtronic is $250. But I might be wrong. No, it's more. It's more because the libri senses off $95 Ah, Australian over here. And the actually know what, I'll look it up. I'll go to the Medtronic website. Give me a second. Look it up. Yeah, it's ridiculous. If everyone just pays a little bit we'd all be better off.

Scott Benner 1:04:35
Yeah, as much as you can. Right? Like, I mean, until it's not a burden and so that everybody's covered it's just at some point they're going to stop treating this technology like it's a nice to have and they're gonna realize that for the people who want it it's it's imperative.

Tiffany 1:04:51
Yeah, but my baby for $350 for one book. Oh

Unknown Speaker 1:04:56
my gosh.

Scott Benner 1:04:59
Yeah. It's ridiculous. I'm like, you know, just make it benefit, everyone gets benefit everyone rather than just going, Hey, you know, if you're under 18, if you're under 21, and then hang on, you know what, when you turn 21, you don't have Type One Diabetes anymore, because you don't need a gym. So you know, we're just going to take them away from you, goodbye, once you go to go to, you know, college, university, whatever. Until very recently in America, people like on Medicare would lose, you know, would lose it when they needed it most when they hit like 65 years old, like we really start needing this stuff like really badly, then they're like, Oh, you can't have it anymore. Because you switched insurances, you went from like your private to this, but they've gotten that finally figured out, but it's just such an interesting idea that, you know, certain ages need it more than others. Like, it just doesn't, it doesn't make any sense to be perfect NIH,

Tiffany 1:05:46
NIH, and like the people who are retired like this, you still got type one diabetes, when you retire, like it doesn't go away? How the hell am I gonna afford to pay $375 for one box of fences? Like even the subscriptions like the subscriptions are significantly discounted, but I still end up paying like $250 every four weeks coming out of your bank account

Scott Benner 1:06:07
out of money? Yeah, no, it's a lot of money, even in Australia, where all you really have to pay for is like snake venom, and, like repellent and stuff like that. And, you know, whatever it is, I mean, whatever it is, you keep your like, grass hut, like clean with like, so. I know. That's not what your life is like. But anyway, like, we are up on an hour, I am going to resist the urge to to go back and let's do exactly how you described your cousin brother. And used you kind of Oh, no, no, but you were fantastic. I really appreciate you doing this. And I know how hard it was for us to get this together and and do this, but I appreciate that you stayed steadfast. And we got to this point, I really am. Okay, I was really excited to have you on and i think i think i was right.

Tiffany 1:06:57
I can always do it again. Cuz like I've got more stories I've got when I went to America and Europe back in 2007. And my each one got stolen in New York.

Scott Benner 1:07:06
And wait. And then during the during the, during the theft. The person who stolen from you pulled out a knife and you said that's not a knife. This is a knife. You pulled out a larger knife. And then what happened after that?

Tiffany 1:07:20
Oh, no, I didn't even realize until like the next day because I was too buggered.

Unknown Speaker 1:07:26
Wait a minute, you were drunk when you

Tiffany 1:07:28
lost insulin. I know I was buggered. I was tired. I've been on a flight. However many hours

time zones and all that stuff. Yeah.

Scott Benner 1:07:42
Somebody just lifted it off of you. Alright, we're gonna find out this one thing. Hold on. So you're, you get to America. And of course, someone steals from you immediately. Yeah. And but

Tiffany 1:07:55
the funny thing was that I went to I went to America, I was doing a summer camp in what's it called Code Camp salaat. I'm, like, now forgotten what the name of what was called. Anyway, it's almost like the border of New Jersey, New York and Pennsylvania, somewhere around that area anyway, late to there. So like something or I can't, like stop what I think the cat like that was the area. And the camp I was that was called B'nai brith pillman camp, which is a Jewish camp. Anyway, so I had to go to America, I go to LA to do my training for a day. Then I get another point. And I go and I fly to get to New York. And then we live in New York. And it's like, midnight, and I get off the bus. And I remember picking up my little bag, my little, my little refrigerated bag that had my insulin in it out of the box. And I went inside to the to the reception area to book to get my room. And that's the last time I remember having my little bag. I can't remember what happened to it after that. So it's possible you lost it and you're telling me this. It's possible.

Scott Benner 1:09:02
It definitely started because

Tiffany 1:09:04
as soon as I realized I went down to the reception area, and I said, Did you see this bag and I described it and I get in like I had a picture of it. I gave him the picture. And they're like, No, we didn't see it. I was like, Oh my god, did

Scott Benner 1:09:19
you replace your How did you replace your insulin being here?

Tiffany 1:09:23
I rang up my insurance company. And they don't replace they replace the cost in Australian dollars, not American dollars. And of course, I bought them. They cost me $35 for a box, five boxes of five pins for 25 pins. But I had I must have got a couple of scripts because I had more than that. Yeah, so I had Yeah, was in 2006. Um, I was 27 back then, um, wow. 12 years those in America. Um, I had I must have had two scripts. So I had like $70 worth of insurance. And that's what I replaced. And my I had done medical leave padlets I had to take as well at the time, which I still do take for blood pressure, like stupid. I, anyway, they replaced the cost of that. And that was easy and obvious, like how the hell am I gonna pay for more insurance in America, and I, my insurance company, I was on the team on the phone with my insurance company trying to figure it out. They wouldn't help me. And so I ended up having to, like ration how much I would eat, and be very, like, that would have been like the worst control of my life. I was away for like five months. Well, um, and I had to, I had to buy syringes. That's the other thing Australia, we get syringes supplied for free, any kind of that we have to pay fingerprints. But apart from that, like, we don't we get, we get in. And pump supplies, you do have to pay for all your consumables for the pump, but we don't have to pay we don't have to pay for for needle tips. And we don't have to pay for syringes.

Scott Benner 1:11:04
Yeah, some stuffs covered and some stuff

Tiffany 1:11:06
to buy a box of syringes. And I was just like, this is gonna kill me. Luckily, like at the camp though, there was a doctor, because we had a, it was a big camp. So obviously, there's an infirmary and the doctor and stuff. And the doctor, I didn't have to pay and say, doctor because the doctor was there. So he gave me a prescription for insulin. And I take a day off work and go to the chemist and I bawled my eyes out like that whole day, it was horrible, just trying to figure out like how I was going to pay for this stuff. And figuring out I needed, I couldn't buy pens anymore, I cut to get disposable syringes, and I had to get vials of each one because it was cheaper than buying pens. Well, I think that that Oh,

Unknown Speaker 1:11:51
yeah, really

Scott Benner 1:11:52
highlights just the stress and the pressure that people with type one feel when they can't afford whatever it is they can't afford that they need for their health. It's a very omnipresent feeling. That just is it's overwhelming, you know, like this, the thing that keeps me alive, and now I suddenly can't afford it, and nobody's helping. And what do I do? And you know,

Tiffany 1:12:14
I like, luckily, like, because I had a really good job before I left and I quit my job because they said they would only hold my position for three months. And I'm like, but I'm gonna be gone for five months, I'm going to America and I'm going to Europe. I'm going to go to New Zealand before I come home, and they're like, Oh, nice, sorry. And I'm like, Well, if you're not going to hold the position for me, I said, Well, I don't want to work for you guys anymore. So I quit. And

Unknown Speaker 1:12:36
I'm like,

Tiffany 1:12:38
Yes, I had all this money like so I bought I got a credit card. And luckily, I got the credit card before I went to America, and you know, pay for my trip and everything. And I had money to fall back on for when I came home. That money ended up being used to buy insurance in America. And so I didn't really have much spending money. So I spent the whole trip like feeling so sorry for myself and having to go to TJ Maxx and like, you know, I want to actually like have something nice that I want to bring back souvenirs,

Scott Benner 1:13:06
right? Not just what you could get for the max for the minimum right, which is Yeah, I understand you're saying no. Oh my gosh. All right. This is it. I have to go you've exhausted me. Actually, I actually do have to go but I really appreciate this and let me just say goodbye. And I'm gonna starting the recording back up real quick because I'm gonna do Arden's lunch Bolus, Wallah Tiffany's on with me, so. Alright, so Arden a little while ago was like, I'm gonna go get a bagel with a friend of mine at school, so I think they split a bagel. I've never seen the bagel before. I did. I did my love

Unknown Speaker 1:13:47
bagel. I love

Scott Benner 1:13:48
bagel like bread, right? And so she's like, she's 179 right now. And I've got her coming back down. We've been bolusing trying to you know, we missed on the bagel bolus, the initial one. Yeah. And we've been bolusing trying to get it back down. So but now we're getting ready for lunch. So now she's got to go to lunch. So we're gonna reset attempt bazel increase of 95% for

Tiffany 1:14:14
we don't have bagels in Australia and nowhere near as good as the bagels I had in New York. And when I had a camp Oh my god, they were amazing with lox, and cream cheese.

Scott Benner 1:14:23
We Yeah, I don't I don't understand how anyone, once they've had a bagel or bread near New York City, goes anywhere else and doesn't hold on a second.

Tiffany 1:14:35
It was anything about New York City with the bagels. I don't like New York City. It's not my favorite place at all. I could think of I would rather go to Pennsylvania and go to Philadelphia. I like Philadelphia,

Scott Benner 1:14:45
Philly. Yeah, that's a good place. Let's see. I'm going to do a 12 unit bolus extended 50%. Now and the rest over an hour, I have a lot of insulin going. So I'm trying to figure out how I can try to figure out how Not to mess this up basically.

Tiffany 1:15:01
Sorry, I'm distracting you from Well, you're

Scott Benner 1:15:03
not I could do this in my sleep. But your pandologic No, no, it's wait. So let's go over everything. First of all, if you're not from the east coast, you've never been to the east coast, whatever. Someone's giving you a breakfast and calling a bagel is not a bagel, and I'm sorry for you. The pizza crust you get is not good. And anything really that's like bread or flour you're being lied to by the people who are giving it to. There's a pizza place in New York City that also has a location in Florida. And they truck water from New York to Florida just to make the dough.

Tiffany 1:15:38
Oh, wow, that's insane. How cool

Scott Benner 1:15:41
are truck full of water drives from New York to Florida. And that's how they make decent pizza in Florida. Wow. And the rest of you? I don't know what you're doing Pizza Hut or something.

Tiffany 1:15:53
If I go to Florida to go, then you could go to Disney World. I am not going to eat pizza there. I would rather eat it in New York.

Scott Benner 1:16:00
Yes. I mean, you might find someone who can figure out how to make it. But the odds are, it's just a pale reproduction of something and just yeah, nearly as good at a bagel once in Indian apalis. Yes, I was getting ready to get on a plane in Indianapolis and I was leaving my hotel and they're like here, we're going to work July. I said, Well, I'd like to eat light because I'm getting on a plane. And they gave me this bagel. And I started eating and I said Can I just get some fruit instead? And she's like, you don't like the bagel? And I said, oh you poor dear. This is not a bagel. I don't even know what this is. You know, I was like, but this is terrible. And please stop eating this. Get on the plane with me. I said you flew into where I'm going. got off the plane in the terminal. But a terminal like a like an airport bagel. It would be the best bagel you ever had to get back on the plane to fly back to Indianapolis. Anyway. Tip Thank you so much. We're all good. I got Ardennes Bolus, and we did a Temp Basal increase 95% for an hour we Bolus 12 units extended did 50% now and 50% over another hour. And I think this is gonna do it. So well. We'll say Good work. Thank you. I'm now going to go get on with the rest of my life and you're gonna go to bed because it is now 120 in the morning where you're at. Is that correct?

Tiffany 1:17:19
Yes, that is correct. Yep.

Scott Benner 1:17:20
Thank you very much for staying up so late to do this. I really

Tiffany 1:17:23
thank you. It wasn't good. It was good. having a chat. Thanks for comfort finally happened after all the stumbles we had,

Scott Benner 1:17:30
seriously might have taken a year to get you on here. So thanks again. I'm gonna say goodbye privately real quick. Hey, hold on till the very end. I have an update email here from Tiffany if you're interested, but it'll be after everything that's coming right now. Huge thanks to me for not doing any bad Australian accents during this episode. And to Dexcom on the pod and T one D exchange for sponsoring this episode. Please go to my Omni pod.com Ford slash juice box to get your free no obligation demo of the Omni pod tubeless insulin pump sent directly to you and learn more about the dexcom g six continuous glucose monitor. I genuinely think that it is at the core of every decision I make. And that you would really love to know more about the dexcom g six dexcom.com Ford slash juice box. You too can help with Type One Diabetes Research while supporting the podcast. You can do a great thing for people living with type one and support your favorite podcast. I'm assuming this is your favorite podcast. Let's just let me believe that it is okay. Anyway, T one d exchange.org. forward slash juicebox. You need to be a US citizen. answer a couple of quick questions make sure you're eligible. As soon as that happens, there's a seven minutes It took me to answer the questions they wanted. There was nothing insanely private. It was about like what insulin do you use? You know what what shape are you when when you were diagnosed stuff like that this information they use to do all kinds of great things in the world. As a matter of fact, some things that you don't realize happened in the world. Medicare covering CGM, that that came from this research, certain test trips being covered by insurance companies that came from here. So they're changing how insurance covers supplies. They're changing how you know, entities see technology. There's a lot going on here. It's a tiniest bit from you. And it has huge and wonderful ripples throughout the world with Type One Diabetes. I did it as a matter of fact, on the first day that my link became available 100 people did it. But that he Wendy exchange needs thousands. So if you can take the time, it really will just take a couple of minutes you can do it right from your cell phone or a computer. The interface is very clean and easy to use. It's nothing about it as a is cumbersome at all. If you can take that time. I think a lot of goodwill come from it. So that's pretty much it. I hope you give it a shot, T one d exchange.org. forward slash juicebox. Alright, just from editing this, I feel the same kind of rush I got when I was talking to tip. She was just amazing. I hope you had a good time today. I'll be back next week with more of the Juicebox Podcast. Thanks so much for listening, everybody. Thank you for telling other people about the show and supporting the sponsors and all the great stuff that you guys do. Seriously. Oh, don't forget to there's like 10 more days left, you can enter the giveaway, celebrating 2 million downloads of the Juicebox Podcast go to juice box. There's nothing to do by the way you just enter you don't have to do anything to enter Juicebox podcast.com. Up at the top it says 2 million. Click on it. There's some talky talk there for me a list of the swag from the giveaway Juicebox Podcast sweatshirt on the pod t shirts, Lily's chocolate gift pack 30 minute consultation with Jenny Smith CDE for free, tons of Dexcom swag tons of touch by type on swag. And it looks like there's just about those close to 2000 entries. So I mean, there's nothing to do he just click on the thing to enter. And that's it. Not keeping your name not keeping your email address. I don't get anything out of this. I'm just trying to give some stuff away and say Hey, thanks for downloading the show and sharing it with people. So if you want to take a shot at some of that, goodness, head over there now Juicebox podcast.com 2 million, little clicky clicky. At the top of the screen, there's a whole bunch of links up there actually. Diabetes pro tip link. The best endocrinologist link is the juice box docs. There's lists of the episodes. Oh, there's a link here to the free pie. Free par The free private Facebook group. Why did it take me three times to say private that was weird signs and symptoms of type one diabetes. Oh, the new BG conversion chart for those of you overseas, right. And I've got something exciting coming soon to go with that conversion chart, but it's not quite ready yet. Anyway, so pretty damn nice podcast. And I think the blog that associates itself to it is also pretty well done. If I do have to say so myself, which I'm gonna have to because there's no one else here. And no one else gives us. Except for me, because I put all this work into making it anyway. Goodbye. Hello. I almost forgot the email. Wait one second. She's home. Sorry.

Tiffany, Tiffany wrote, hey, Scott loving listening to all the stories from everyone you have on the show. I was just wondering if there was a scheduled date for my recording to go out. Tiffany, you're delightful. This by the way is back in March. It's August. Now Tiffany recorded this in January. And it took us a year so it's gonna take about two years for Tiffany to get on the podcast and total but anyway. Oh, there's been some updates to the CGM subsidy in Australia on first March 2020. It was updated to now include those who have access to those receiving assisted benefits from the government for low income pensioners. Low income and slash pensioners um

Unknown Speaker 1:23:17
Why am I being texted?

Scott Benner 1:23:21
People leave me alone. I'm trying to do something here. Oh, geez. Now I have to start over March 1. Updates now include those who have access to wait, what is Tiffany? What are you trying to Tiffany reading you is like talking to you. It's absolutely delightful. March 1 2020. It was updated to now include people who have access to those receiving assisted benefits. Alright, Tiffany, Elizabeth here. It seems like it seems like people who receive assisted benefits assistance benefits from the government in Australia for low income people or people on pensions. She says this means since I'm a stay at home parent, I can now access it too. Oh, she's excited happy dance. I just received her email to she just received an email today telling her the application was successful. And now she just has to wait for the CD to train her. She's going to be using Dexcom g five. Also g six has passed and should hopefully be available mid year in Australia. Okay. I hope you all got that. I'm now exhausted. Tiffany I love you. I I think I want to start a podcast. It's just me and you. We're not even gonna talk about anything. We're just gonna talk. I'm now really leaving for real. This is over. Goodbye.

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#369 Ask Scott And Jenny: Chapter Fourteen

Answers to Your Diabetes Questions…

Ask Scott and Jenny, Answers to Your Diabetes Questions

• Any helpful tips on sleepovers?

• What to do and consider when relocating? Tips on finding a new doctor.

• What other specialists do diabetics need to visit?

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

+ Click for EPISODE TRANSCRIPT

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

Scott Benner 0:02
Hello, everyone, welcome to Episode 369 of the Juicebox Podcast today on Ask Scott and Jenny. And these are questions that Jenny and I did our best to answer that came directly from you. Today we'll be talking about sleep overs, relocating, finding new doctors, blind management, which is the idea of being able to manage Type One Diabetes without being with the person that you're helping. And what are those other doctors that people with type one diabetes need to visit? Now you guys know Jenny, by now, Jenny has had Type One Diabetes for over 30 years. She's a certified diabetes educator and a lot of other cool things. But mostly, she's the first you know, from the pro tip series from ask Scott and Jenny, of course, and defining diabetes. Jenny really is just the cat's pajamas when it comes to type one and a couple of other things. Please remember, while you're listening 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. If you hold on for just one second, after the music, I have something for you.

So today's show doesn't have a sponsor in the classic sense, meaning that no one has you know, paid a fee to put an ad on the podcast today. What I do have, however, is an opportunity, one for you. And one for me. One for everybody living with Type One Diabetes, actually, but let me explain a little bit to you. If you remember back a number of weeks ago, maybe it's months now, the CEO of T one D exchange came on. It's a nonprofit that does data driven stuff to help people with type one diabetes. Anyway, after that episode, I maintained a relationship with T Wendy exchange, we're talking back and forth about a couple of things. And they asked me if I'd be interested in helping them gain participants for the T one D exchange registry. So see the T one D exchange registry is a research study conducted over time for individuals with Type One Diabetes and their supporters for like the parents of somebody with type one as well. The participants are volunteers that provide their data for research by just answering these questions in an annual survey. Once you're enrolled, registry, participants have the opportunity to sign up for other studies on various topics related to type one diabetes. The goal here is to improve knowledge of type one diabetes, help accelerate the discovery and development of new treatments, or to generate evidence that supports policy and insurance coverage changes that help people living with type one. So if you're not just paying for me to tell you this, how does this work? This is important for me to tell you, I want you to understand this.

Every one of you that goes to the link, T one d exchange.org. forward slash juicebox enters the registry, answers a couple of questions to see if you're eligible. And it's really just about having diabetes, couple other things. And then complete the questionnaire, which I've done already took me about seven minutes, I actually did it live. And I recorded it. So it's at the end of this episode. So you can hear took me about seven minutes. The questions are very basic and completely anonymous, your information will never be attached to the answers, they will never know that you. Let's say your name, for instance, is john. And john, your information, the answers to your questions will never be attached to your name. It's taken very, very, very seriously. HIPAA regulations are followed to, you know, the nth degree. Anyway, this information impacts all kinds of things. For instance, you know how Medicare started covering cgms. They used the data that the T one D exchange was able to pull together to show how important that was. And it helped move that legislation forward. It's helped coverage for test trips, it's helped to show that Dexcom can work without finger sticks, all of this different stuff. But but here ends up being the real problem. The more data that they have, the better. They can do their job. And the T one D exchange is having trouble getting enough people to do it. That's why they came to me they thought that this podcast could reach more people. It's not a situation where people don't want to do it. It's that they don't know it exists. So they don't know how to do it. So they don't just need 25 of you to do this. They don't just need 100 of you to do this. They need thousands of you to do this and it's super simple. Again, you'll see at the end, but you go online, the website is really clean. It's very intuitive. It's easy to get through a couple quick questions. Am I okay to do this? Yes, comes back immediately through your email, you keep going, right there on the web page, answer the questions, I go over every question. So you know them. And then that's it. And then annually, so yearly, you'll be asked to kind of update your answers to some things and maybe ask different questions. I put a lot more information at the end of the episode, so you can understand this. But that's it. It's super simple, and incredibly valuable for people living with type one. So if you've been looking for a way to support people with type one diabetes, and if you'd like to support the podcast, this is going to do that, you know, with one one effort two birds, one stone, think of it any way you want to, you're going to help people with type one, you're going to help yourself, you're going to help your child, you're going to help the future with type one diabetes, and you're going to help support the podcast. T one D exchange wants you to know that the purpose of the study is to collect the information from individuals with type one diabetes, and parents of children with T one D to learn more about the management of type one diabetes, how it may change over time, and how different management approaches relate to glycaemic outcomes, acute complications and the use of health services at this time, there is no end date in sight for the registry. T Wendy exchanged hopes to follow a large group of people with type one diabetes over many years, so they can get a very firm grasp of what all this data means. Anyway, I think the people listening to this podcast fit perfectly into this idea. And I know we can reach a lot of people. So if that sounds good to you, and you can spare a few minutes, T one d exchange.org. forward slash juicebox. Links near show notes and links at Juicebox podcast.com. us residents only. Oh my god. Hi.

Unknown Speaker 7:00
Hi.

Scott Benner 7:02
When you texted I was like leisurely. Just you know,

Jennifer Smith, CDE 7:05
like getting a cup of coffee or no tea. Don't drink coffee. Tea. Yeah, I was.

Scott Benner 7:10
I had a Arden's blood sugar got low on me at 4am Oh, no, just two seconds. I got up and I fixed it. But I I stayed awake to make sure. And then the dogs barked. And then before I knew it, it was 630 to get out. I hadn't been up yet. And Kelly let me sleep. So I just like 10 minutes ago, my eyes was like, Huh, it's morning. Funny, I don't sleep in ever. I never get to sleep in. So I was like,

Jennifer Smith, CDE 7:43
well, that's a long sleep. And it was.

Scott Benner 7:45
And so I was like, Okay, cool. Like, I'm gonna go set up and get ready. I'll take a shower. And then you're like, I'm ready. Lady, what's going on? All right, Jenny, let's actually get to the questions here, shall we? Get Megan Megan goes, I've heard Jenny talk about when she was little. This is about little tiny Jenny Oh, and did sleep overs. I've never let my daughter go to someone else's house overnight. She's nine years old. Any helpful hints? She doesn't wake up to her phone alarms. So it would have to be me calling in other parents when she needs something. Well, I know what I do. So you're in a different position. You're, you're not little Jenny anymore. But like, let's talk about that for a second back in the day. Like why was it easier when people knew less about diabetes? Like and I mean about the data and what was actually happening? Because

Jennifer Smith, CDE 8:37
Yeah, I mean, did you because nobody could follow anything. I mean, there was there was literally no continuous glucose monitor. And while there were pumps, they were they were nothing. So I didn't I didn't have one. I was only on daily injections. I mean, this lipo was first that I had, it wasn't like some random person down the block that was like, Hey, I met Jenny at the playground. Let's have her come sleep over. You know, I mean, these sleep overs were with good friends that knew that I had diabetes. I mean, they didn't know much about the management of it. But you know, what my parents essentially my mom really did. And she was like, the order keeper in our house. Was she just kind of hyped up a plan, right, she was, she called the parent ahead of time. She knew kind of like what kind of snacks and things what we were going to be doing, whether it be like playing outside or whatnot before or if it was just an evening kind of thing where we'd be watching movies and then talking all night or whatever it was, you know, and she essentially just gave a guideline for Jenny needs to check her blood sugar at these times. Again, we had no continuous monitor just so I had to do a finger stick right and you know, has to have a snack at this time because actually at the time of doing sleep overs, and even In through high school, the insulin that I was on required very regular meals and snacks, I didn't have the option of using a human log because it wasn't available or a nova log because it wasn't available. There was no rapid there was our right, which was longer acting. So I had very time two types of things. So I always had an evening snack plan. And it was just that my mom had to make a consideration for what that was going to be at the friend's house. Now compared to what I usually had at home,

Scott Benner 10:31
did you deal with the lows, the way people deal with lows now on that insulin.

Jennifer Smith, CDE 10:37
Um, only if you didn't eat only if you didn't eat correct, because on regular insulin, you usually mixed it in a syringe with an intermediate acting insulin, which was cloudy, right? And that had about a 12 to maybe 16 ish hour impacts, you took that kind of insulin with the our insulin every 12 hours morning, you didn't take any insulin at lunchtime, because the cloudy insulin was supposed to peak in action. And so the lunchtime met the peak of that insulin, so you didn't take insulin to cover lunch. But again, meals were also very structured, like I had a certain amount of fruit and vegetable and protein and fat. And, you know, everything at the meal was very sort of sketchy, you know, a schedule that was regimented. So I think that might have actually made it a little bit. A little simpler. I would say

Scott Benner 11:28
I'm honestly, I'm thinking your mom's real concern was eating at certain times, right testing to make sure we're not way crazy off one way or the other, and, and maybe having to adjust the insulin a little more aggressively for party foods that you didn't eat every day.

Jennifer Smith, CDE 11:47
Right? Right. And potentially knowing that, you know, the next morning, I mean, the call was always this Jenny's blood sugar. It wasn't that the parent of the house figured out what to do. It was that they called my mom and they were like, this is Jenny's blood sugar, and that we did the math, and we figured it out. You know, we knew how much to take them in. Because we did have a correction. Yeah, you know, to be able to add in. But as far as overnight, I believe I remember the parents at night, waking me up in some cases, but I can definitely say not all the time to test. I mean, that was a, that was a thing that my parents did do at home. But I'm quite sure that my mom didn't have them doing that all the time with,

Scott Benner 12:33
it'll be okay. It's usually Okay, that kind of thing.

Jennifer Smith, CDE 12:35
And she went with that, because she knew the kinds of things I was going to be snacking on at a party in the evening, were likely actually just going to drive my blood sugar higher than we would want them anyway. Yeah. And we just left him sit there. So you know, we didn't know really,

Scott Benner 12:48
so. So I think the two things here that make your experience different than Megan's question is the type of insulin right that we use now versus back then. Right? And that your mom had things pretty well structured, right? Yeah. She wasn't like, things weren't a mess at your house for your diabetes. Your mom was like, well, we'll just roll the dice and let her go. You're like, shoot, right? She had a plan? I think it sounds to me, How old is your mom?

Jennifer Smith, CDE 13:21
Um, my mom is

Scott Benner 13:22

70. How would she do on one of these interviews? Do you think I just thought it might be. might be interesting to talk to your mom one day. But, but you'll decide if that's a good idea or not. I don't I don't need to know. But But my thought was, is that she was she was more like us, the people listening to this podcast, probably. But back then. She really, like dug through it. It wasn't just as easy as you know, like, blah, blah. Like, I know, I had friends who had diabetes, you know, that long ago. And it was just sort of like, Hey, this is what they told me to do. And this is what I do. Right? They weren't looking at it any farther than that. Right? And so

Jennifer Smith, CDE 13:59
today's technology has brought in the ability to see so much more. I mean, I mean, even my mom says, today, gosh, I wish that I had had this type of visual information. When you were little right. The things that we could have done differently is kind of, and I'm like, you know what, Mom, I'm alive. I am complication free. You did a really good job with what you had. And that is what it is, you know. But in today's world with the technology we have, you kind of have to take it and say, What do you know about the people where you're sending your child's sleep over?

Scott Benner 14:34
Right really going to do this thing that you're asking to do? Or will they not see it as being important? But I also think that if Megan has a CGM, if she has a dexcom and she has shared I mean, which I think at this point, they all share like there's not one that I don't think anybody's using one that they can't see on a phone or, or something like that remotely. So is the idea for me. I mean, here's how I did it. I think I thought, okay, I can't not let Arden spend the night at someone's house, right. And I've had two different experiences. I've had parents who lets you know what, I've had three different experiences. That's interesting. I've had parents who just listened to what I said, and didn't over or under think it. And that always went well. I had a guy who had struck him so hard. The Father, not the mother. He just stayed up all night long. He couldn't bring himself and go to sleep. When I got there in the morning to pick him up. He hugged me, and we did not know each other. And it was a I'm sorry, Your daughter has this hug. Oh, like it was like that.

Jennifer Smith, CDE 15:39
Like, I'm sorry that you stay up all night? Yes.

Scott Benner 15:41
He just assumed I think that I probably know, he probably looked at me. Like, that's why that guy looks so bad. But, yeah, I mean, I wouldn't be I wouldn't be okay either if I never slept, but no, he just, he cared so much. And he and he took it so seriously, that he couldn't bring himself to have a moment he slept through. And he just sat up. Sure. And I've had people this one woman comes to mind. Who, if something would go wrong, it was fine if it went right. But if something went wrong, if Arden's blood sugar got out of toe a little bit, she'd call me and say you have to come get her. And she made me pick it up at three o'clock in the morning, once. So I've had all the different experiences. So the people you're sending them to, are a big part of this AR because you don't know how they're going to react to being able to see the data. Right?

Jennifer Smith, CDE 16:37
And I think you may want to in that, in that sense, you may want to even start with the people who really, you've come to know them, well, you don't only know their child, but you've come to know the parents of the child, right? You've gotten comfortable with them, they see your strategy of management because you've interacted socially, hopefully again, at some point.

Unknown Speaker 16:59
What right.

Jennifer Smith, CDE 17:02
video now. Right, right. So, you know, I think once you get to know people, they have a comfort level, because they can see how you strategize. And they can see your comfort level with it. It's throwing a child into a setting where again, it's like, the parent of a kid who's kind of newer, to the group of kids your child hangs out with, and you're like, they're trying to get to know people. So they're going to have a party and whatever. Well, you know, what, maybe call the parent talk, see what their comfort level really is with everything. Because people I've learned people get a sense of comfort from what you exude. Right? They, they, they feel eventually what you're feeling about it. So if you're like, oh my goodness, wow. I mean, they're gonna be all like, anxious and like, ramped up

Scott Benner 17:53
to, every time I talked about school, I tell people do not come off as crazy, because they're just gonna think you're crazy. And that's going to be the end of it. Now, the person who made me come get Arden at three o'clock in the morning, let me say this. I was not surprised that she was the one that that happened with. She was a me person. And when it got hard for me, being her she didn't want to have anything to do with anymore, but her kid was popular and art and was trying to, you know, get along. Yeah. Interestingly enough, now I think Arden's popularity has changed a better way. Yeah. So I don't see Arden trying to, you know, make friends anymore. It's she's just comfortable with the people she's comfortable with now, which is really nice. But But this bigger idea. And Megan, you're lucky you answer the SS question here. Do you know, years ago before all this fun technology, I actually sat in Manhattan for 12 hours in a television studio in a chair, and a light would come on. And someone would say you're live in Indianapolis on CBS three news in 54321. And then I would talk about sleep overs. And I did it for Lilly. And then you'd sit back and say this one's a radio, you don't have to be on camera and you sit back and then you do a radio interview. I forget what they call them. But I did one one time for Lilly diabetes, when they were putting out this little book, it was like kids books or something like yeah, like the CoCo bucks. Yeah. And it was interesting, because I got to talk about sleep overs over and over again, it was a little more like, Listen, you really need to let your kids do this, because it's a weird thing to restrict. Now, having said that, I know people who think that sleep overs are weird, and would never let their children sleep in someone else's house. And I don't know that I can argue with that. Like, I mean, if that's your feeling then right on, but what I think is, is that if this is something your kid wants to do, and something you want them to do, having to restrict them because of diabetes is gonna have some sort of psychological impact. It might be a little But it's not a good thing moving forward, I was never allowed to go anywhere, which will later build into I shouldn't go places I'm scared like it could, it could pet right it could build, some people might not care. So I think if you've got the technology, the way I ended up eventually being good at letting art and go anywhere, was I would practice managing when she wasn't with me through Texas Rangers, right, and then we got so good at it, I don't need to be with Arden to help her with their blood sugar, right, then it becomes the overnight spot, then you have to have a person who's willing to take a phone call, and knows it's possible the phone's gonna ring overnight and will wake up and can take direction from you over the phone. Correct me though.

Jennifer Smith, CDE 20:44
And all kids too hard, a very different level of their own ability to manage, right? Some kids from early on, can wake up to their alarms, and they may not know how to treat it, but they wake up to it, they go shake their parent, they're like I'm low, or their parent is already in the kitchen getting themselves think or whatever. Some kids sleep through everything. And it's a good majority of kids who actually sleep through everything, you know, because they just kids have a very deep sleep, which is a good thing. But from the standpoint of alarms, especially when you're trying to communicate with your child at three o'clock in the morning, and they're, you know, six miles away. That's it's hard. So again, you have to have that communication piece with the parent, not necessarily saying hey, if to sit up all night and watch my child's blood sugar, but if I call you, I would hope that you're going to answer you know,

Scott Benner 21:38
two other things with technology that helped with that. One Find My iPhone for people with iPhones, if you don't know what find iPhone is it sends a piercing signal through another phone. So you know, you could send that. The other thing is to I would you know, after dexcom share was was you know, a thing. I put the the follow app on the parents phone, right? But only give them alarms for low extreme

Jennifer Smith, CDE 22:08
high or really

Scott Benner 22:10
percent right, I would put an extreme high or at 55. I said, Alright, listen, if this thing beeps you know, kind of deep and twice. Her blood sugar's too high. And if it beeps, like faster, I can't I said dumb and you'll see like, it actually sounds more panic the low beat Yeah, it feels like it's killing you, oh my god, you're low do something. Or my brain is, you know, you know, attributed that to the sound at this point. But and I said, you know, it'll be beep, beep, beep beep for really fast that's low. Low means do something right now don't wait, hi means we really should be getting her blood sugar down. And those were simple, like directions that I think they were able to understand. Yeah, maybe my

Jennifer Smith, CDE 22:55
mom, my mom went as far as all the sleepovers that I went to I always had my glue gun kit with me. I did. I mean, the parents again, were knowledgeable, good friend, parents. And they, they knew how to use it. They knew the purpose of it. So I just I brought it along. But again, never had to use it in those circumstances. Thankfully, the parents never had to try to read the directions at two o'clock in the morning. And

Scott Benner 23:22
it's a tough thing to look at another human being in the face, pull the thing out and go, if she has a seizure, what I need you to do, like, wait, what a second now. Yeah, and you're like, Oh, don't worry, that's not gonna happen. I used to say aren't had diabetes for five years, six years, eight years, that's never happened. We've never used one of these, I buy these and throw these away all the time, blah, blah, blah. Right. Having said that, if she should have a seizure, it's not a not a reassuring thing to say to another person. But it's a good thing. And so my point is, maybe have that this is how the glucagon works conversation, not at the drop off. But prior to that, so that you don't put them into shock. You know,

Jennifer Smith, CDE 24:02
and I think you'd actually just said something very appropriate. It's the prior to, it's the planning. Yeah, right. Most people don't have any plan for dropping their child off at a sleep over. Other than just saying, yes, you can go get everything ready, and they drop them off. Yeah, as a parent with diabetes, you already know that you have to have a plan for a plan and plan B for Plan C and whatever else. Yeah. So it's the plan ahead, the talk ahead, don't expect to spit everything out at the parent as you're dropping your child off at the curb and then be like, bye, bye.

Scott Benner 24:40
This is not something you should be yelling out the car window. I'm actually thinking we should add a couple other things to this. So parties, picnics, things that you don't go to because you don't you know, you don't like the parents. So you just I can't spend the afternoon over there with those drunks, you know, like gigs or whatever. Whenever you know, something you Won't be at. I think a lot of these ideas fit right along. And they're actually simpler because people are always going to be awake during them. The one thing that I know causes a hiccup is a pool party when you go in the pool, now you're not, you don't have a signal for your CGM anymore, right. And so I think still, one of my, one of my most valuable diabetes skills, is being able to blind manage diabetes, like not to have to be with the person or see exactly what's happening, to infer, from what I know about the situation or what I can see in the data. I think that's why I'm good at looking at someone's graph and being like, hey, blah, blah, blah, you know, do this and this and the way I think of it, the way I thought of it originally, when I realized I need to be better at this when I'm not with it, is I was always impressed by customer service people for computers. Like they're not looking at your computer, but they're walking you through the computer, right? Like they're like, you know, see that thing over there. Click on that,

Jennifer Smith, CDE 26:06
you know, the parts, they know where they are, they know where to poke it, they know exactly on a list of a drop down which one to write,

Scott Benner 26:12
right, like, in my mind, make yourself a marine that can take apart and put his gun back together, blindfolded. Like, like that sort of a thing with diabetes. Like I feel like I'm there now, which will help you in your own life too. But it definitely helps you when you lose the signal. And you can calmly say to yourself, okay, the signals last Arden's in the pool now, yeah, she's not gonna swim that long, she doesn't usually swim this long. So in about a half an hour, you know, she was 105 and a half an hour, if I haven't heard from her, I'm gonna send her a text and ask her to get back near the transmitter for a minute. And be okay with that. And not be sitting around your house, you know, scrolling on the walls in your own excrement because you've lost your mind. Billy's a nice boy. Like, you know what I mean? Like, like, try to hold it together is what I'm saying. And if you can't hold it together a nice phone call to the host parent who's willing to take that phone call or text just say, hey, I need you to have Arden test your blood sugar. Right? That's all

Jennifer Smith, CDE 27:12
and tell her to get out of the pool for five

Scott Benner 27:15
minutes, text me afterwards. That's, it's all very reasonable. In the end, as we're talking to Megan and talking to each other, and I'm recollecting all these things I've done throughout time with diabetes. In my mind, I feel like I'm like, I almost feel like I'm getting away with something or having a podcast, because is anything we've just said not common sense. Like, right? It's just that what happens to us around diabetes, is the fear literally knocks that common sense right out to you. Correct? Yeah. And then and you cling to I need rules, give me rules to follow, if I have rules, then nothing will happen to my kids not gonna have something happened to him, I don't want to happen. I don't think that's it. Like I don't, I think those rules are just there to make people give them like a, almost a false sense of calm, where what you really need to do is understand it, and is different than anything else in the world really. You know, also making keep in mind is your kids nine, now she's going to get a little older skin and want to go to a dance at the school, this is going to be the same, the same muscle you're going to use there, you're going to start sending her to parties, I hate to say this in the 1314 range, some little malcontent and your town is going to start drinking and think it's really super cool to bring alcohol to a party. And hopefully your kid won't be the one at 14 years old and artist that wants to try it right. But you know, by then I'd like to see you have a firm grasp on this. Because, you know, right, everything gets a little harder when they hit that, that age in there.

Jennifer Smith, CDE 28:50
And I think you brought up a point to before about, you know, it's your decision that you just don't agree with sleepovers at all has nothing to do with diabetes, then for the child who has siblings, those siblings also follow the same rules. So it's a little easier for that child to feel like has nothing to do with diabetes, it's just because mom and dad don't really agree with going to sleepovers. Whereas if your siblings are going to parties, and they're eight years old, and you're 12 years old, that's really that's not fair. It's not your call, and you're causing a problem that could be a problem later on for how that child continues to grow and feel about sharing about diabetes and being open about it and even managing it a little bit more on their own in an open way.

Scott Benner 29:36
Diabetes is already an already has the possibility of being an issue in your kid's life. You don't want to turn it into that cousin that you talk about behind their back. Where you know, I mean, where you're like, oh, yo, Patty's great. And then at home, everybody's like, Patti. So where am I? Right? You know, maybe like you, you know how it goes with family, right? Like because that's, you don't want your kid you don't want to be telling your kid. It's fun. This is manageable, you can have a normal life. And then, you know, three times a year be like, but you can't go because of this diabetes. It's not my fault. I'm not the one keeping you out of it. Because now you now know Nobody. Nobody likes Patti, and not therapy, and right, not gonna help you throughout your life.

Jennifer Smith, CDE 30:18
No, no, I mean, I can, I can remember only one. And as an adult now, well beyond my teen years, I still remember this one time that I was not allowed to go to do something. And it was in high school. And I know it had to do with diabetes. I do. Yeah. And I know, because my brother who's four years younger, so we were never in high school together, right. I finished I went to college, he started his freshman year, so we were never together. My senior year, our basketball team went to stay. And that meant that we wanted to travel with our team. And we wanted to go to state and watch them play a weekend tournament. Right? My mom wouldn't let me go. All my friends were going my known friends, good parents that my parents knew were going to be there. My mom wouldn't let me go. Yeah. And I knew the reason, despite her letting me go to a million other things, sleep away Girl Scout camp, sleep overs, all those things. But I was in high school. And she didn't want me to go out of town to sleep in a hotel, along with this like, and again, I think from a visual had she had some information technology wise, she would have been okay with it. But yeah, that was the one instance and I know it was diabetes, because my brother when he was in high school, they also at some point went to state, the varsity team, and my brother got to go

Scott Benner 31:46
could this has been a gender thing, as I'm asking was, was was your mom trying to keep Jenny pure another week? I don't know. Why, why did you really want to go to the basketball tournament?

Jennifer Smith, CDE 31:58
And that's the funny thing that was a really like, I was I still am pretty much like a follow the rules. There are many things that I don't, you know, follow strictly everything kind of go my, but I'm pretty much like the rule follower. And I was I growing up my brother was the one that pushed the buttons. He pushed the limits. He did not me. I was the firstborn and I did it. Like I was told I'd be home by 1130. I am home at 1120. I was told to be home at 1130. I I don't know if it was the gender component. Perhaps it was. I maybe don't

Scott Benner 32:33
I don't know, either. I'm just wondering. That's all

Jennifer Smith, CDE 32:35
anyway, that's the only one situation that I

Scott Benner 32:37
can remember if your mom was like, I'm just gonna pull this diabetes card out one time here to keep Jenny a virgin.

Jennifer Smith, CDE 32:47
Boyfriend at the point.

Scott Benner 32:49
Don't need one of those at a basketball tournament. Anyway, that's nice. Do we want to talk about relocating when you have type one, like literally moving somewhere else? Or do we want to talk about it or

Unknown Speaker 33:05
have you? Oh, I've done.

Scott Benner 33:07
Alright, here we go. MC pres what to do or what to consider when relocating, especially if you're the caregiver of a younger kid with type one, what should I do before leaving? And when I get to my new location? All right, Jenny, you married somebody in the military. All right.

Jennifer Smith, CDE 33:26
I did. My husband is a retired Marines.

Scott Benner 33:29
So he actually probably does know how to take a gun apart with his eyes closed. And what else can your husband do in the dark? And? And

Unknown Speaker 33:42
we'll go with guns.

Unknown Speaker 33:42
Yeah.

Scott Benner 33:45
We're just gonna talk about Jenny's husband's pistol for a couple more seconds. And then we're going to talk about reload. I'm just kidding. Go ahead. What do you do to read now that I've got her?

Jennifer Smith, CDE 33:52
Yeah, we've, we've relocated a lot. I mean, since we got married. We have moved many numerous times, within cities as well as out I mean, we grew, we moved. When I did my internship out to Colorado, that I took my first job and we moved down to Florida. Now we, that husband took a different job. So we moved up to Washington, DC. And then the area was very busy, and we wanted to be closer to family. So we moved back to Madison, Wisconsin to be closer to family when we wanted to have kids. So we've moved a lot. And in each instance I can say that prep ahead of time and so that this is a great question. I somebody is thinking ahead here, they're thinking I know I should be planning something, but what should it be right? I mean, as as the person myself with diabetes, I always very quickly established, who to go to write with whoever my insurance was. Once we got there who I could see I called a bunch Have people I called around to see, you know, as an endocrine practice for adults? Do you see a lot of type ones? Or are you mostly type twos and you just dabble in type ones, or, you know, you're only like, this friendly to this particular pump, and you don't want to help anybody with anybody, anything else? I. So I guess, in that it's asking questions, right? In within, again, kind of your network of provider availability, yeah. As the caregiver, those are some things that you can do ahead of time, that, you know, if you're, if you know that you're moving someplace, obviously, you've got a location that you're moving to, you're not just going to like live in your car on the street corner until you find a place. So you've either got an apartment, or a home that you're renting or a home that you're buying and your new location. You know, consider distance in a city, if the best provider is 20 miles across the city, but they're the best. And you've heard the, the greatest things and they've got openings, you have to kind of fit that into your I can do that. And in the moment to see the person every three months or every six months. So I can do that? Or do you want to be closer? Do you have a lot more issues that you need to discuss, but calling around as well, like I said, if you know, especially because insurance dictates a lot of what you can do. So if you know what your provider is going to allow in the new location, look at the network of providers on that plan. Yeah, start to pick out some even even you know, with so much social networking online and the diabetes online community, there's so many Facebook groups, especially available that can give you you know, parents of kids with type one, ask a guarantee, at least in some of the big major cities, and in most of the states, you're gonna find somebody who answers you back and says, Hey, I live in this city, and I see this person and they're really, really awesome.

Scott Benner 36:59
You know, mine when you do that, though, everybody, everybody grades differently, like they do. What is awesome mean? Like, you know, in the back of someone's head, awesome could mean you know, I come in there with an 8.1. And they don't give me a hassle. I like that. It's awesome, which probably isn't is a good thing. I'm just saying that people's expectations are varying. But I do think it's a valuable way I just used my breach to try to find a an endo, for a girl in New York City. Yeah, you know, and I'm wondering as we're talking, if you don't, I wonder if you couldn't set up a short conversation, not an interview, you wouldn't call it an interview to the doctor, because they wouldn't like that. Right there. God complex would definitely not like that. But um, but you know, I conversation where you say, look, this is how I manage? Would that be okay with you? You know, like, would you be open to helping me on this path, because I don't want to take all the effort of coming to the PAC practice sitting down explaining to you what I do, and having you say, you can't do it like this, or, you know, I just don't waste your time or my time. I wonder if that's not valuable?

Jennifer Smith, CDE 38:04
I think that's kind of the it's sort of a more in depth. thing to do, I think more the tip of the iceberg for for filtering. Yeah, which is kind of what you're doing is calling the providers that you can see, you know, on your plan or whatever, and assessing, most likely you're going to get in contact with their nurse that helps them rather than the actual practitioner and ask ask them Yeah, right, you know, have a line of questions that are essentially, I use this kind of product, I use this kind of continuous monitor this kind of, you know, I use this software. Does your offer, is your office, you know, kind of allowable for these types of things. Do you use these? Would you allow me to bring in reports, if you can't physically see them? How much time will you spend with me? I've got a lot of questions. I've got other things besides diabetes, maybe they've got celiac as well. Or maybe they've right can you work with them?

Scott Benner 39:03
how flexible would you be if I said, you look, I you know, I don't wait three hours to correct the high. You know, because there's a there's some places who'd know, I'm starting to believe they know so little about it. In regard in terms of like, looking at the data and making a decision, they need to know when things happen, because that's how they think about it. I'm starting to think now that's what it's about. It's not about I don't want you correcting a high probably in the back of their mind. They're like, geez, get this blood sugar down. But if you did, then they don't know how to look at your graphs and make sense of them anymore. Right. And and so, you know, if I did that, yeah, right. I need these notes to say what I need them to say so that I can help you. Otherwise, if you bring me different data, I'm, I'm useless to you. You know, I'm starting to think it's a little less about them wanting you to do something a specific way just to control you or because they think you're wrong. And it's more about them, about you getting them out of their element. By doing things differently than they're accustomed to, right, right. But But and

Jennifer Smith, CDE 40:04
that's, that's the notes component that I always talk to the people that I work with about. Your doctor isn't necessarily like a bad doctor. Yeah, it's just that one, they have a time constraint. First. Secondly, if you only give them your pump to download, there are no notes. There's no history, and there's no information about it. They can only take the information there and make suggestions based on data, right, but they don't know the variables of your day. If you come into the office, and you've been in Aruba for the last three weeks drinking my ties on the beach. They didn't know that when they looked at your data and said, well,

Unknown Speaker 40:43
gosh, right,

Jennifer Smith, CDE 40:44
what was going on here?

Scott Benner 40:46
Sometimes people don't know, I have to say, That's weird. What's happening right there. You know, I, you know, what made me think of this. And I've never considered this before. But I think it's a good idea. Like you're saying call head talk to a nurse or practitioner or something, get a feel before you lock yourself in, and then then have to go through that trauma. It made me think of, when my son was recruiting for baseball, we went to a meeting. And I think he wanted to go to this place. And the guy started saying weird stuff. And it was like any any we walked out, he goes not here, not this guy. And I went, Okay, why he goes, I don't know, man, not here. And I'm like, all right, you know. So he just, he got some feedback back from this man that made him feel like this is not where I want to spend four years playing bass. Right?

Jennifer Smith, CDE 41:31
Well, and you bring in a good point there too, from you know, this, this person is asking specifically for their child, they don't know how old this child might be a young or might be a teen or whatnot. But I think especially for all ages, finding this would be a pediatric and no practice, right? But finding one that the doctor really has interaction with the child and expects the child to be a part of the conversation too. Even if it's you, right? It's it's not just I'm talking to your parent, and you're off in the corner playing on your iPad, because I don't give two hoots about talking to you. I'm just going to look at your data. In my opinion, if it was my child, that's not the kind of practitioner I want. My child needs to be engaged in that visit, even if they're three years old. And the doctor just asks, Where do you like to put your pump? Or which finger Do you like to stick or write? I mean, there needs to be and that those are questions again, that you can ask ahead of time. How do you work with kids? Yeah,

Scott Benner 42:35
and that's good, because it might not be so important in the moment, but it's important for when your kids 25 and feels comfortable talking to their doctor about their diabetes, right? Yeah, I our endo is very good about that with Arden. Because, you know, in honesty, Jenny's right, they're just they're honestly those kids are really there. So they can check their sites to make sure their sites aren't going bad. And like, you know, right, ask them, you know, the rest of the questions or to make them comfortable. And now you're making a point, though, about being an adult. I think about this all the time for Arden. I wouldn't know this if I wasn't so involved in community. But adult endos are a bit of a grab bag. Right? It there's not a ton of really good ones. And so, unfortunately, I want Yeah, I wonder how long I have to start prior to art and getting booted from a children's hospital. How old? Do they let you be at a children's hospital? You're done college 18. Is it not? If you go to college, you can keep going there because PD pediatric? That's a good question. Yeah. also find out about that.

Jennifer Smith, CDE 43:40
Yeah, I would definitely ask about that. Because I know it used to be like, when I was kicked out of my pedes it I was 18 Yeah, it didn't matter. That was in college. I was 18. And I had to switch over to a an adult and oh,

Scott Benner 43:53
yeah, I'll tell you, I might very well lead with Listen, here's Arden's records for all these years. I just need you to write some prescriptions. Can you do that for me? You got an A one c machine back there somewhere, you know what I mean? Like, like, that sort of thing. Without being cocky in a way that will make them be like not like you to like there's that's the other part of it is like you have to realize you're building a real personal relationship even though it only happens 20 minutes at a time every three months. You don't want the doctor to walk in and look you in the face again. This one? Yeah. I remember him. He didn't need me, like didn't mean like you're you need to avoid that kind of stuff. So. Alright. That makes sense to be cover that,

Unknown Speaker 44:40
I think All right, cool.

Scott Benner 44:46
So here's a pretty simple one. And now you got you go.

Jennifer Smith, CDE 44:48
Oh, I was gonna say the one. The only other thing that I would add to the end of that would also be from a prep standpoint, which is the quote, you know the question make sure that priority tubing, you have enough supplies that you're not in a rat race of establishing with a practitioner to actually get new prescriptions for things. Yeah. Because that a new new provider will usually not do, right. If they don't know you from the corner, man. They are not going to write a prescription for you just because you're in urgent need of one, but

Scott Benner 45:22
the person you're currently with would probably be happy to load you up before you moved. Yeah, right. I know. Um, one time, Kelly switched jobs, unexpectedly. Nice way of saying that, isn't it? One time? Oh, and don't worry, we're fine. But but but you know, she switched jobs unexpectedly one time. And I was right on the phone, nurse practitioner, I was like, Hey, we might have a gap in medical insurance. And she's she, I didn't even have to like, finish my sentence. She's like, Oh, okay. I'll just send all the scripts here because we bought online pharmacies. Like I'll send everything in right now. for it. I was like, thank you. There was it. So what I'm saying is that while my wife was transitioning, there was a stack of insulin in my refrigerator big enough that like, we couldn't buy hotdogs get on me. Yeah, so we're a little low on space. And, and, and that's because we had a great relationship with her. But you know, she's the one we know. So if you're going to relocate, stopped up with the person who knows you beforehand. All right. We I think we can do this one before you go. Brittany said, all of the other. By the way, there's a before I start, there's there's a question here that I don't know if we can ever, I'm going to read your question, and we're not going to do it. But it says I feel like so many of us struggle with finding the right balance of explaining diabetes, like fitting in the right amount of details. So they understand it's more than a couple of shots, but not too many details where you give, but they give you the glazed over last

Jennifer Smith, CDE 46:54
is like explaining to somebody else about

Scott Benner 46:58
just like not necessarily the how or the why or the scientific medical part. But like a, hey, if you're listening to this, someone you know, love has type one diabetes feel they need insulin for food they eat but not all carbs are equal, you know, and she goes, this is really interesting. She goes, basically, you know, could you roll all of the episodes of the podcast into a quick 30 minutes that I can hand off to another person? I don't know. I don't know if we could and at the same time, I'm I'm invigorated by the idea of trying.

Jennifer Smith, CDE 47:31
Well, actually, that strikes of funny because I had a thought the other day, like as I was, I usually try to like read or like do a little bit of journaling before bed. Just like my down mental shift. And I was thinking, we've done a lot of like informative, I was like, I wonder if somebody would take all of these and like write them into a book. I make a book for

Scott Benner 47:56
waiting for somebody to ask me to make the podcast the book. And to be perfectly honest with you. I started having that conversation with someone last year, and then it died somewhere along the way. But interestingly enough, for you know, I've written a book, I have this podcast, there's a couple of things I've done throughout my life. If you knew how many things how many irons went into the fire and never came back out of the fire again, you gotta throw a lot against the wall to make something work, you know? Yeah. Yes, you do. I'll tell you what I you know, hold on. Let's do one more quick question about that. Okay. So Brittany says all of the other type one diabetes related appointments we need to make diagnosed for nine months and just heard last week, we need to make eye appointments for my four year old what else Don't I know about? So I appointments are the, you know, the big one, right? They dilate your eyes, and they look all the way back there and they get a baseline for the health of your eye? And then you go back every year and do it again and again. Yep. Right? And what do they just tell people what they're looking forward to that.

Jennifer Smith, CDE 48:56
They're really looking at the vessels in the back of the eye? Anytime you go to an ophthalmologist, not just an optoma optometry, you know, Dr. omala, just actually has studied enough and knows, like, kind of the diseases of the eyes. And also can really focus in and do that where they dilate the eye. They look at the back of the eye. They're essentially looking at the vessels and they're looking for what are called micro like hemorrhages, or big hemorrhages, potentially, but they're looking for those vessels to have kind of opened, right. And when that happens, the eye tries to heal itself and it makes these tinier little vessels. But unfortunately, in that healing and making of little vessels, those little vessels are not as stable so they have more potential to break and or hemorrhage yet again, creating more problem in the eye so that you just we really want to establish and when I was first diagnosed, my doctor told my parents Not to have me visit the eye doctor until my blood sugar's had actually stabilized after diagnosis. Because those high blood sugars can affect so much early on, it makes

Scott Benner 50:09
it look wonky right there,

Jennifer Smith, CDE 50:11
it makes it looks wonky. So you, you really want some stability after initial diagnosis to go in and get an eye exam, right. So, you know, nine months post diagnosis certainly get been established, where is the eye health right now, whether the child has to or 80, or 96, you want to have kind of an established, this is where your eyes are, because then every year at least, you should be having new checks. And if there are problems that do end up coming up, they'll have you come in more frequently then, and there are therapies and things that they can do if there is a problem down the road. But that early on, gives you baseline, right. And for little kids, it's it's really mostly the eye doctor, really, I think of one two that many people don't really consider relevant to diabetes, but it's the dentist. Yeah, if you don't have a regular dental routine for your children with diabetes, get on board with that right now. They should be having a cleaning evaluation checkup every six months at least. Right?

Scott Benner 51:16
Yeah, it's a for a couple of reasons a diabetes, but by your kid is, you know, we always talk about it, like, you don't think of juice is a bad thing. Cuz it's medicine. You know? Oh, my kid takes Smarties by do. You know, like, there's a lot of simple sugars, especially in the beginning, when you're really learning how to keep things, they are a lot of sugar that is not followed up by much teeth brushing. So you really have to be ahead of it. And I've talked about it on here before we just one time switch juice boxes, because Arden just was sick of hers. But I had the right one meaning I could track it, it did what I wanted, it didn't have too much sugar in it. In the six months, she used the other box. And thank God she had baby teeth, teeth still, she developed 10 cavities from this different juice box. So you know, yeah. T says, Is there anything else you should be doing that she can't think of right now.

Unknown Speaker 52:13
I mean,

Jennifer Smith, CDE 52:15
you know, we always talk about like, foot health as well with diabetes, right, just from the standpoint of like nerve health and everything. podiatry. I mean,

Scott Benner 52:25
you know, taking your No, no, your four year old to the house. Yeah, this

Jennifer Smith, CDE 52:29
unless for some reason they already have been established with flat feet, or something else, or they've got shoe inserts or whatnot, obviously, you want to talk to your podiatrist and inform them. Well, now we have a diagnosis of diabetes in the picture here, as well, just to you know, I obviously chart should show them that, but you just want to bring it up.

Scott Benner 52:48
Yeah, if you don't understand the reason, foot health is so important for diabetics, if you should develop neuropathy, and you can't feel your feet now suddenly a small wound that you'd be aware of you might not be aware of any more wrapping that could be your fat goes on long enough, that can be a really terrible problem.

Jennifer Smith, CDE 53:06
Correct. And in the same vein, you know, kids are kids. I mean, sometimes my kids run around in the backyard in the nice grass without shoes on. Yeah, I mean, technically, as somebody with diabetes, and technically, you know, we're told Don't, don't not wear shoes, you know, walk in the backyard without shoes, and walk out to get the mail in the morning or whatever, you know, without my flip flops on, and, but I have feeling in my feet, no

Unknown Speaker 53:33
buttons, nobody dresses.

Jennifer Smith, CDE 53:35
But even for kids, you know, kids, sometimes they're not very like a tune to their body, right? So check your kid's feed every time you give them a bath or at night when you're taking their socks off to put them in bed. Just check their feet. And that's better than anything but don't have

Scott Benner 53:51
a paranoia around it puts don't happen. Right, right. I mean, the only thing, the only other thing I would say to Brittany is that through the years, you know, I pay a little closer attention to blood tests. I think I don't just take it's in range as an answer. So, you know, what does that mean? Am I at the low end of the range of she thought, like were in that range? Is she and you know, I'll go into it in another episode. But, you know, Arden has hypothyroidism but her labs were quote unquote, in range, but we were watching her like, shut off like a, you know, like a light. That battery was dying. Yeah. And and the doctor is like, no, she's fine. We don't treat in this range. And I was like, ooh, you treat my kid in this range. So make make with the Synthroid, you know, right, but right. I'll talk about that at some point.

Unknown Speaker 54:39
Yeah,

Jennifer Smith, CDE 54:40
I think the the only other thing I was gonna say would be um, this is a, I feel like this is a missed point entirely. And I know I've talked about it, we talked about nutrition, and kind of impact of foods and whatnot. But for kids who have diabetes, working with A good dietitian, who's a diabetes educator. Yeah. It's a great way to establish what are your child's needs? Not because they have diabetes, but as a child, what should your child be eating? How much and it's not, you know, work with somebody who really understands that it's not all about, I'm not here to talk about carbohydrates, I get it, I know how to count my carbs don't teach me how to read a label. I want to know what my kid needs, how much extra protein do they need, they're in gymnastics for hours, three times a week, or they're playing soccer, you know, two hours, four times, whatever it is, those are really important, because then the diabetes management works in to what you're

Scott Benner 55:43
feeding them. We really don't talk about, like, food as fuel. No, in America at all the way we should. And sometimes you're pushing through activities. And your body is, you know, it's it's lacking. It's eating itself to get through what it wants to do. And you're like, Look, they're fine. They're kids, kids are resilient, you know? Right, whatever stupid thing people say.

Hey, huge thanks to everybody out there for sending in their questions. And of course, the Jenny from integrated diabetes.com for coming on and checking it out. If you want to hire Jenny, you can do that at integrated diabetes.com. Okay, if you want to join the T one D exchange registry, just go to T one d exchange.org. forward slash juicebox. And you can do everything that I explained at the beginning of the podcast episode. But if you'd like to actually hear me go through the questions first, that's going to happen right now. So settle in and keep listening or jump over there to T one d exchange.org. forward slash juice box right now. And get started. Okay, guys, I'm gonna sign up for the T one D registry right here. My name is Scott, enter. My email address is Scott Juicebox podcast.com. password, phone number for added security for a one time identification code to your mobile phone. All right, do that. Who am I completing these questions for my child who is under 18. The other option is myself over 18 because I picked my child I put in hardens name. Sign up. Well, that was easy. confirmation code. That quick submit success. Your account has been created. Let's get started. Okay, now I'm going to answer the questions. Start the study. Are you and your child able to read understand English? Yes. What's your child's date of birth? was easy. I knew that. What is your child currently live which state? Okay, was easy. And the code you can also answer my child does not live in the US or US territory. Let's say. Has your child been diagnosed with Type One Diabetes? Why she has been easier child currently using insulin? Yes, I'm finished. You are all finished the screen questions? That was easy. Once you're ready, you can submit your answers. I have submitted my answers. But this is going to tell me if I'm if Arden's eligible for success your child is eligible to take part in the registry, you will now move on to the informed consent and decide to go to consent. There's some legal stuff here I say continue what is good for my son? Can I stop being the study? You or your child can stop participating at any time you will be told about new information or is there a cost related to being the study no cost? Is there a payment for taking part in the study? There is no payment for taking part in the study at this time. How will my child's or my information be kept confidential? Very, very, very. There's a lot of stuff here confidential. Okay. Now consent, I agree to take part and then type your name like a signature and agree received an email says, Oh, it's a copy of the consent form. That's lovely. That was easy. And you do a cent you're being asked to be in a research study. The purpose of this asset form is to help you decide if you want to be in the research study then you should not join this study until you've answered all the questions are answered. Okay. Who's doing the study done by the T one D Exchange and is being funded by the Helmsley charitable trust. He went to exchange we use the funding to organize the study. purpose of the study is to collect information from individuals with one D and parents of children went to India to learn more about the management of T one D, how it may change over time and how different management approaches relate to glycaemic outcomes, acute complications and use of health services So at this time, we do not have an end date for the registry, but we hope to enroll and follow a large group of people with T one D for multiple years. That's cool. And I hope that a large amount of those people come from this podcast. Alright, so we say yes to assent we have your consent you have completed the informed consent process, you are signed and dated consent form has been sent to your email. Oh, there it is. Okay, now there's a questionnaire. Before you start, you will be reading and answering the following questions on behalf of a minor. Okay. What's your child's biological sex at birth? They identify race and ethnicity. What percentage of the time does your child reside in your home? When was your child diagnosed with Type One Diabetes? You know, I don't remember the exact day. What's interesting, just put month in year how was your child diagnosed? Or it was in DK? What was your child's last day one see this one? I know

5.8 How did you or your child find out about the registry I found out from the Juicebox Podcast that's other juice box make sure you put that in their podcast Cool. Thanks. What's the highest level of education that you the parent of the parent or caregiver completed Please select only one answer. What is your the parent or caregivers current household income from all sources? How would you best describe your the parent caregivers current employment status? I think I'm employed right here on the podcast. Call that part time. What kind of health coverage does your child currently have? Who does your child see for diabetes care? And you can choose more than one like she has an endocrinologist but also a nurse practitioner he which of course we go by Be specific match practitioner got it in a certified diabetes educator. How tall is your job? I know this to Arden is five seven feet seven inches.

Unknown Speaker 1:02:21
wants to see why. I know that as well.

Scott Benner 1:02:26
Just any of her immediate biological family members have diabetes. Does your child have any other immune diseases? Seems so hypothyroidism? I look at this psoriasis is listed there. It's interesting.

Unknown Speaker 1:02:44
Is your child currently pregnant?

Scott Benner 1:02:46
No. How many biological children does your child have? Zero? Has your child ever been treated for and or diagnosed with any of the following frozen shoulder? anxiety Alzheimer's substance abuse I'm not gonna read all these let me just roll through here real quick cardiovascular disease

Unknown Speaker 1:03:07
No, no, no, no.

Scott Benner 1:03:11
It feels pretty good to be able to say no to these things. That's cool. No I should child had an ice slit transplant. No. pancreas transplant No. Types of insulin does your child take a pee next How does your child usually take insulin? insulin pump tubeless Omni pod it's very specific was also on here for if you loop you can put on here open APS Android. Oh, there's very uh, insulin, pens, oranges and helbling. Everything's here. addition to insulin. Is your child currently using medications to lower blood sugar? No. Child ever used a real time continuous glucose monitor? Yes. The dexcom g six. How many times per day? Does your child check their blood sugar with a glucose meter? Doing a little averaging here? Which glucose monitors your child use? Oh, that's easy. Contour. Next One blood glucose meter. Where's that? From a sensia Contour. Next One. Got it. Next, describe your child's experience starting in January of 2020 with Coronavirus.

No, my child has not had symptoms. And then okay. And my child did not get tested. Okay. I finished it was it I submit my answers. I've done it. I have successfully joined the T one D exchange and completed the questions. Now what's gonna happen is once a year they're going to reach out to me and ask me to update some questions. And that's it. That's all this is completely complete. pletely blinded meaning no one knows who you are. Nobody knows who your kid is. These are just questions that you're answering to help other people with type one diabetes. The T one D exchange registry is a research study conducted over time for individuals with Type One Diabetes and their supporters. Participants volunteer to provide their data for research, for example, by answering questions in an annual survey. Once enrolled, registry participants have the opportunity to sign up for other studies on various topics related to type one diabetes. The goal here is to improve knowledge of type one, help accelerate the discovery and development of new treatments, and to generate evidence to support policy or insurance coverage changes that help people with type one diabetes, all participant information is kept confidential participation is completely voluntary, your information will be kept in an encrypted database in an anonymous way, this means in place of your name, you will be issued a randomly generated identification number, opting out at any point will not affect your care. By sharing your opinions, experiences and data, you will help create the most comprehensive data set of those diagnosed with Type One Diabetes in the United States. This will advance meaningful treatment care and policy, all participation information is kept confidential. And participation is completely voluntary. This questionnaire can be done from your mobile device on the go or in the comfort of your own home. It is fast as you just heard, easy as you just heard, and confidential. As I've promised you now three times, and the T one t exchange has promised me over and over again, I asked them a million times before I did this, the online platform is very easy to use. I just did it in front of you. But I'm telling you super simple and clear. The screens are clear what to do next is clear, there's no you know what I mean? Like it's not a messy setup online, you can really see what it is you're supposed to be doing. It is not difficult to get through this. The T one D exchange, of course takes your data very seriously. That's why they are HIPAA compliant. When you register, you're assigned a unique identifier. So none of your personal identifiable information will ever be linked to the data, you provide your what I'm saying, you and the data, even though I mean, you heard what they just asked me it's not like it's a big deal or anything but you and the data are never associated to each other within the database. Nobody could. I'm so nervous talking about this, because I'm going to keep saying data and data because I jump between data and data just like it's super easy. Oh, by the way, everything you do with T when the exchange is online, you'll never be asked to go to a doctor or an in person study or anything like that. But if they have something like that in the future, that's going to be completely optional. So if you've ever wanted to support the Type One Diabetes community, and didn't know how this is a really super simple way for you to do it. And full disclosure, it supports the podcast. But I want to be absolutely clear. This is an ad. Now it doesn't mean that the T one D exchange just said Look, I'll pay you some money to be on this episode, you'll tell people about the exchange. It's not an ad like that you just hearing this is not is not making money to understand I'm saying I'm going to get some money every time one of you completes the survey. So if you're looking for a super simple way to support the T one D community research development, things like that, and the podcast without having to buy anything, right. So here's a way for you to support the podcast without $1 leave in your pocket. You don't have to get yourself an omni pod tubeless insulin pump, you don't have to get yourself a dexcom g six continuous glucose monitor. You don't have to get yourself a Contour. Next One blood glucose meter. You don't have to buy Lily's chocolates. You don't have to get some GMO glucagon through a link. Like none of that just do this thing. You'll support the podcast. Obviously, supporting goals of people with type one diabetes comes first. But if you can help the podcast at the same time, I mean, double bonus. Right? Like Bingo.

I just want to add that as you know you hear me say all the time I'm very careful about the advertisers that come on the podcast. I think you know that I believe on the pod Dexcom Contour Next One to be gold standard in their spaces and the T one D exchange gives me that same feeling. I don't know if you remember back a little while ago but the CEO of the T one D exchange, Dave Walton came on the show and I had a really interesting conversation with him. That led to more conversations that led to this opportunity. So being superduper honest, the T one D exchange has thousands of spots open and they need this data from the from thousands of people and they're not getting it. So they came to me and said we were hoping you could reach a broader audience with more people and fill these slots. So Everybody, please go. They don't just need 50 people, they don't just need 500 people, they need thousands. And I know you're all out there, I can see, I can see who's listening. So if you guys could just jump in and do this, you'd be helping them, helping me helping the podcast, helping yourself helping other people with type one diabetes, it is a win, win, win, win, win, win, win. Okay, guys, T one d exchange.org, forward slash juicebox. I put that link right there in the show notes to the podcast app. And there'll be a page at Juicebox podcast.com. But all you need to do is go to T one d exchange.org. Ford slash juice box and do the things you just heard me do. It's that simple. Thanks so much for listening to this episode of the Juicebox Podcast. We'll be back very soon. With more interviews, information, and fun. Oh, hey, I'm glad you're still here. Listen, I bought any new microphone and we had a time set up this to get it all set up for and it happened to be as I was finishing up this episode, the editing of this episode, so I recorded it. I don't know if you want to hear Jenny and I set up a microphone. But if you do keep listening,

Jennifer Smith, CDE 1:11:17
stay in place. And then I hooked on the microphone and just see where it was supposed to be. So I was

Scott Benner 1:11:22
like, clearly that's all I had to do. By the way a second ago. I decided I'm recording this because I'm going to put it at the end of the episode. I was trying to hook your microphone and microphone. So if you want to curse I'll BPL Okay, so you already hooked up your one mic, it shouldn't be that hard. This is just a USB cable just like the other one, right?

Jennifer Smith, CDE 1:11:41
Um, yes, it's got a USB cable. Again, I didn't like connected or plug it in yet. And it looks like it's got a place for like, it just got a headphone jack to

Scott Benner 1:11:51
Yes, that is not something you'll need.

Jennifer Smith, CDE 1:11:54
So just keep doing my headphones through the computer like I do. 100%

Scott Benner 1:11:57
that's for if you were doing recording and you wanted to do something where you could hear yourself before you got processed through the computer, you'd listen to that. And that's actually those dials are for that as well. So you won't need those dials either. Okay.

Jennifer Smith, CDE 1:12:13
So I don't really have to play with either of these, which I don't really know what they mean nothing

Scott Benner 1:12:17
for you to do there.

Jennifer Smith, CDE 1:12:19
Okay, so just plug this into the computer and then hopefully the microphone goes through this. I

Scott Benner 1:12:25
think it's gonna magically begin to work. Let's see. I'm just finishing an episode that's gonna go up now, but with you and I, oh, yeah, I can ask Scott and Jenny episode.

Jennifer Smith, CDE 1:12:38
Oh, nice. Yay. Okay, I've got like a little blue light on this thing in the jigger. Okay. It's all fancy. Like I walked into my office, I set it up, like, at night, it was like 10 o'clock, because then everybody's asleep, right? And nobody bugs me. And little boys aren't like, Can I play with the buttons and like, dial everything and like, see how the arm works and whatever. Yeah. And so then I walked into my office the other day, and I was like, outside my office being completely deranged right now because we'll be doing the floor and everything in it. So everything works for it. This is art and stuff from

Scott Benner 1:13:11
her room or painting her room. Everything of hers is behind me right now. So I hear you.

Jennifer Smith, CDE 1:13:16
Yes, if you could see the floor, it looks it's like a disaster. for it. They walked in and I was like, outside of the horrid stuff. I was like, my desk actually looks like it looks like like a studio.

Scott Benner 1:13:30
Kind of is. So um, alright, so I think what you need to do is go you're Are you in zoom the application? Are you on zoom online, you have the application zoom on your, on your computer, right?

Jennifer Smith, CDE 1:13:43
I do have the zoom app on my computer, and that I clicked the link that you sent me in the the message and I just pulled up my messenger messages on my computer. And I just clicked the link through the messages. So I'm assuming it's coming through the app on my computer.

Scott Benner 1:13:59
So top left of your so when you click on the zoom window and activate it, you should see on the top left of your screen and your Apple it should say zoom.us next Yeah. Okay, good. So go up to that and then go down to preferences. Yep. And microphone. What's the show?

Jennifer Smith, CDE 1:14:18
I have? Oh, yeah. So it's on audio already. And then

Scott Benner 1:14:22
this is a microphone microphone on turn. All right now,

Jennifer Smith, CDE 1:14:26
it looks like it says built in microphone. internal microphone. Yes.

Scott Benner 1:14:31
Click on that. And then the new microphone should be there as well.

Jennifer Smith, CDE 1:14:34
Yes. And click on there.

Scott Benner 1:14:36
Yeah. Okay. Oh is the volume all the way up the volume slider underneath of it.

Jennifer Smith, CDE 1:14:41
The volume slide is like a little bit down lower than half. We should

Scott Benner 1:14:46
all the way to the top. Let's see what happens at the top.

Jennifer Smith, CDE 1:14:51
Hello, move, move, move, move, move. almost to the top. Wow.

Scott Benner 1:14:58
Okay, let's try halfway.

Jennifer Smith, CDE 1:15:02
Alright, let's see here. Oh, I don't know what it's, it's not sliding down. Now, let's just

Scott Benner 1:15:11
click on it. You can click on the dot and then drag it.

Jennifer Smith, CDE 1:15:16
It's not dragging for me. It's not doing anything. It's kind of weird. Did you click on automatically adjust microphone volume by mistake? Oh, let's take that off. There. So now it's in the now it's in the middle.

Scott Benner 1:15:28
Okay. So, now you can see, I my microphone is different than yours, but I'm up on my mic, right? Yes, I'm like, about next to it like next to him. I don't want you to have to be that much. So let's try bringing it How far are we from your face right now, I guess. Jenny's measuring with their fingers, probably about 434 inches. Okay, three inches, so try bringing it a little closer. But there are that,

Unknown Speaker 1:16:00
hey, that's like, two inches right

Scott Benner 1:16:03
there. Whoo. It sounds really good.

Jennifer Smith, CDE 1:16:05
Okay, I'll have to just mark this little like, space. Well, like, I feel like I like cfcu. Because the microphones like covering. I know,

Scott Benner 1:16:14
I feel the same way. Sometimes. Actually, there are times when people say you go away from the mic. It's because I'm looking at a person and I kind of turn my face to try to feel more like something which is not the there's not good, better, better, they can hear us. Cool. So I'm with you at that desk. Here's why I like you at that distance. Because when that slider was higher, we were getting a little noise but but slide that slider up just a little bit more. And let me see where the noise comes in.

Unknown Speaker 1:16:43
See.

Jennifer Smith, CDE 1:16:47
So now it's at like three quarters.

Scott Benner 1:16:50
And there's a little bit of noise. So slide it down. Go back a little bit. I'm trying to get it so that's louder, and you can take the mic a little farther away from your mouth, if that makes sense.

Jennifer Smith, CDE 1:16:59
So now it's probably at like 60% of the way towards full volume. I love this.

Scott Benner 1:17:04
This sounds terrific. It really really does sound good. Yay. Oh, I'm so excited. I'm glad it's because this good.

Jennifer Smith, CDE 1:17:13
I don't I don't hear anything like different but I also don't do this, like, you know, I don't record and do all of the listening and the editing. So I don't hear the differences. Yeah,

Scott Benner 1:17:23
it is literally not going to sound any different here, but it's just gonna be way better for the people listening. So this actually ended up being Oh, I lost my ears for a second. But I know why give me a second. Um, hold on one second.

Jennifer Smith, CDE 1:17:38
Yeah, thank my my tea and like slosh around the ice cubes anymore. While we're actually

Scott Benner 1:17:44
because the irony here everything The irony is, is that microphone is going to hear less of the background in your room than they did. So that one is more just right here around your mouth. Because interest. It's so odd the way this worked out. Because you and I set up this microphone test randomly. And I spent the morning editing an episode, the episode that made me think I am buying Jenny a new microphone. Because there was something I don't know if you remember we must have recorded How would you remember this was like April right? As Corona was starting. We did an ask Scott and Jenny, which is this episode right here. Okay, um, because I'm just going to leave this conversation at the end of it so people can hear it. And there was a noise behind you. And we couldn't get rid of it. And we were like, Is it the fan from your computer? You remember? So there's some small noise in the background? That that microphone was just picking it up? Right?

Jennifer Smith, CDE 1:18:38
Yeah, I remember picking up the mic that I had, which is a much better mic than I had ever had before. And I was like moving it around. You're like Yep, nope, I can still hear it. I can still hear I don't know what else

Scott Benner 1:18:50
was picking something up in the room, right like a background noise in the room. And so I'm getting a text that Arden is hungry. One second. Apparently I'm the short order cook. today. I would never say this in front of my wife. But when we're both working for home, I think to her Her work is more important than mine. So when something like this comes up, I tend to be the verse that takes a break and goes and handles it. But I'm not complaining. It's fine. No. But anyway, yeah, like so we're recording and there's this background noise and you're talking I'm really interested. And then I'm just annoyed by the noise and I thought yeah, I have to get any better microphones so you have a much better microphone now. And you sound super clear. As a matter of fact, in an hour or two when this is on the internet, you should go listen to some of it from the beginning and then and then listen to this you'll be totally different in the difference in it. I am jacked up excited about this. This is a really great thank you and you don't have anything else to do so. Is it okay like you'll be able to keep it out of your way when you don't need it like or Yeah,

Jennifer Smith, CDE 1:19:52
absolutely the arm is really actually quite nice because I it did come the microphone itself came with like a stand to pop it up.

Scott Benner 1:19:59
I saw that. I didn't like that though, for you

Jennifer Smith, CDE 1:20:02
that Yeah, the nice thing is that this I can just slide off to the side and pot often over. Um, so yeah,

Scott Benner 1:20:10
plus Thank you very much. No, please, thank you. Here's some stuff you don't know about yourself when you're being when you're making a point. You bang the table. Do I really you get excited? You're like, you bang the table. So I couldn't give you the mic stand on the table because it would like go think when you were doing that that was and so I'm like, I she can't have that. That's why when I didn't by the way for anyone listening I did not force Jenny. I said Do you want a boom arm? Or do you want a table? She got the pic. And but when you said you under the boom arm? I was quietly like, yes. Okay, that's gonna be better. But you're gonna use this now for your calls. Now? I would imagine, right?

Jennifer Smith, CDE 1:20:45
I guess I certainly could try it and see if the call like, if the noise and everything is certainly better, especially since you said that it deletes much of the noise in the background. I mean, I do work from home. So especially with everything the way that it is now and the fact that my upcoming second grader will be virtually school from home.

Unknown Speaker 1:21:06
I'm ever feeling it was gonna be on the podcast sometime this year.

Unknown Speaker 1:21:10
Or noise? background.

Jennifer Smith, CDE 1:21:12
But that'll be kind of nice. Because if I do use this, I would expect that then maybe some of that background noise will be less Yeah, I'm can't guarantee that my 85 pound chocolate lab barking will be completely gone. But

Scott Benner 1:21:26
no, no, this is a way to you just hear those a clarity in your voice now. And like a like a, I think you would call it a timber. Like there's a depth to it that didn't exist before. So isn't there's perfect? Listen, we never do this. But when we're going to record on Friday, let's see. Can we do an episode of you and I talking to significant others in people's lives, teachers, co workers, family members and explain diabetes to them. Like this is the first time they're hearing about it.

Jennifer Smith, CDE 1:21:57
Like layman's term? Well,

Scott Benner 1:21:59
well, so like imagine you get diagnosed or you have type one and you have people around you who want to know more, but it's overwhelming to explain it to them. I want them to be able to say here's an episode of this podcast. It will explain diabetes too. Can we do though? That sounds fun. I think we can. Okay, absolutely. All right. You go back to your life. This is super exciting. I will send you a text when this is available so you can hear it. Thanks Scott. CJ, you want to say goodbye to the people are gonna hear

Jennifer Smith, CDE 1:22:23
Bye bye. Bye

Scott Benner 1:22:27
bye. See you

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About Jenny Smith

Jennifer holds a Bachelor’s Degree in Human Nutrition and Biology from the University of Wisconsin. She is a Registered (and Licensed) Dietitian, Certified Diabetes Educator, and Certified Trainer on most makes/models of insulin pumps and continuous glucose monitoring systems. You can reach Jenny at jennifer@integrateddiabetes.com

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