#371 Diabetes Pro Tip: Explaining Type 1
Scott Benner
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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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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