#715 Bold Beginnings: Fear of Insulin

July 8, 2022Scott Benner

Bold Beginnings will answer the questions that most people have after a type 1 diabetes diagnosis.

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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 friends, and welcome to episode 715 of the Juicebox Podcast

Hello again and welcome back to the bulb beginning series today is actually the fifth episode but third installment. The way that happened was that episode 702 was about honeymooning 706 was about adult diagnosis. And then 711 was supposed to be terminology, but it got a little long. So that ended up being terminology part one at 711 and terminology Part Two at 712 which makes today's episode 715 bold beginnings fear of insulin. 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, or becoming bold with insulin. If you're a US resident who has type one diabetes, or is the caregiver of someone with type one, you can complete the survey AT T one D exchange.org. Forward slash juice box. Your answers to these simple questions will help people living with type one diabetes T one D exchange.org. Forward slash juice box this episode of bold Beginnings is sponsored by Ian pen from Medtronic diabetes. You can get started today with the M pen at in pen today.com. The podcast is also sponsored by the Contour Next One blood glucose meter. Learn more about Ardens blood glucose meter at contour next one.com forward slash juicebox jetting so far we have I think three episodes of the bull beginning series are out or today actually, as we record this the dolt diagnosis one went up. And today we are going to record fear of insulin lows and highs. And there were a ton of a ton of feedback that came from people again, these are statements from people in my private Facebook group, when asked what do you wish you would have known at diagnosis and surrounding the fear of insulin, low blood sugars, high blood sugars, we got this back. So just a couple of them here in the beginning, it's going to set the stage that don't really need a response, I was scared of insulin. The next one says seriously, the fear of insulin was real. We were scared of insulin as the next one, we had to wake up twice a night for finger sticks. And it felt like we were chasing a blind number. I'm really glad they did have me practice with glucagon. Because when I had to use it, even having to think about it. You know, the person said they wanted to understand glucagon so badly because when they actually had to use it, they were having an experience that was so surreal that there was no time to think my daughter's had a couple of seizures. And I know what that feels like you're like, you just you look at that package. And you just hope your your body remembers what to do, you know, right? The first thing I really want to talk about here is this statement from a person who said, I was handed a bunch of pamphlets and they said read these and oh, by the way, this insulin stuff, it can kill your kid. So don't do it wrong. But don't worry, because we've given you all the tools you need. And this person said they were freaked out instantly, rightly

Jennifer Smith, CDE 3:43
so with that type of explanation. Because I'm really you're given pamphlets to explain something that for the most part, a lot of people who are using insulin, are completely using it like off the Standard label of prescription that their doctor told them. Right? I mean, eventually you get to the point of or many people do have, there is no fear and you understand the action of insulin, you understand how to manage around it. And that takes fear out of the picture. Because you you get it but initially to just be given these pamphlet that's like here. Oh, and be careful because this could kill you. But clearly, exactly. There's no fear here.

Scott Benner 4:27
Everything's Don't worry. We taught you everything you need to know. And you're sitting there thinking, I don't know anything. So how could that be true? It isn't really weird situations like hey, here's a car don't worry, they're super safe, but wear the seatbelt and drive 45 And don't hit anything for God's sakes because you're gonna fly through the windshield and die. But don't worry, we thought you were the brake was so it's going to be okay. And it just a lot of this does end up boiling down to the person that you luckily or unluckily bump into when you're diagnosed to you know, just their ability to explain some because that's statement, you could just say it in reverse. You could say, Hey, listen, we've set you up with all the tools that you need. I know you don't feel comfortable with them right now. But trust me experiences are going to make them feel more and more just just real to you things you don't have to think about. But until you get to that point, it's important to remember that too much insulin could make you low, could give you a put you in a seizure. I mean, if you gave yourself way too much he could kill, you just have to say it backwards. Yeah.

Jennifer Smith, CDE 5:30
And also bring in and these are the preventative things that we're doing from the start. So that that doesn't happen sooner, eventually, you will have low blood sugars, eventually your child will have a low blood sugar, it will happen. I mean, they put out this, like insulin will, can can cause a low blood sugar, insulin will cause a low blood sugar. At some point in your life with diabetes, you will have a low blood sugar you will, right? So just tell somebody that right? That takes it out of the picture of Well, is it going to happen? Yes, yes, it's going to happen. But this is what to do. These are the tools you have, you've got simple carbohydrate, this is what you can expect it to do. You've got glucagon, this is what you can expect that it's going to do for you. You've got these pieces to manage. When that happens, right, which should help somebody feel less fear in using it right. It's not like they're dropping you off in the middle of the desert with nothing around and up. Here you go. But you got to take your insulin.

Scott Benner 6:33
It's like when you do send your kids out driving the first time you're like, listen, drive very safely be aware of people around you. When you have an accident, which is going to happen one day, here's what you do next. You know, do you don't say if because it gives you that feeling of like, well, maybe I'm gonna be one of the people who never happens to. And then you spend your whole life kind of paranoid, paranoid. Aliy that's good. Can't be a word, but you're paranoid, and is now I'll make up words. But you get in this situation where you're constantly trying to stop a thing. It's like trying to stop the sun from coming up. Like one day your blood sugar's and look, the next person says, I wish the doctors would have explained to us the likelihood of lows and how to treat them. No one told us about that. And my son had a bad low first time we came home sounds like the kid was gonna libre to wanders into their bedroom at 1130 going, hey, something's making noise in my room, because you remember that the poor kids only had diabetes for two minutes, you know, right? His blood sugar's 45. And then this poor lady sleeps in his bedroom for the next month. And then she gets a Dexcom that gives her like, you know, alarms that are a little more in the moment, and but a month, she's on the floor or on a bed or something, because now she doesn't know the kid doesn't know. They're all in a panic. Why? Because somebody didn't just say what you just said, you know, the first day my daughter went to kindergarten, I went to the nurse and I said, let me explain all this stuff to you. I explained it all to her. And she goes, Don't worry, we won't let that happen. I said, No, you misunderstand. I'm not telling you this stuff. So you can stop it from happening. I'm telling you this stuff so that when it happens, you know what to do. Right? It's like it's diabetes. We're not going to stop diabetes from being diabetes. You know, right. This lion is going to bite your face one day. Yeah. I don't care how many times you go into the cage within. It's fun. And you're in Las Vegas me like, is that a Siegfried and Roy reference? It is? Yeah, one day the lions going to kill you. Okay? It's at least gonna come at you. At least bite your arm. You need to know how to hold up the whip in the chair when it happens, you know, right? Well,

Jennifer Smith, CDE 8:36
there is actually what I was gonna say, you know, you need to know what to do. But in some cases, I think people get really good tools, and really good explanation. And in other cases, people do not they get these rip off pages that say, well, here you go. This is all the information that you need. Just make sure you read through it. Oh, and here's your medicine. It's called insulin. You have to take it here, here. And here. Oh, and you know, you might have low blood sugar. But then again, what can you do about it? Or what are even some of the tools? Or I guess what are some of the variables that could cause a low blood sugar? So you're ready, right? You can say okay, well activity will cause your insulin that you have to take to work better. So be careful for low blood sugars. If your child eats a meal and then goes and plays soccer for three hours, right? All these things that they should know are sometimes the definite causes of low blood sugar because then at least people are aware of where they might see a low

Scott Benner 9:40
well and everything you're saying supports this next statement, the person said there was so much anxiety my child had a fear that the ambulance was going to come take him away constantly. Your took months to wear away she said so. You know, everything you just said would have given this person, a little bit of calm or even something to say to the kid because that gets Like what's gonna happen? And when you're when your answer is, I don't know, you know, like, that's not supportive in any way for people. One person is this great excuse. We're gonna kind of segue here a little bit. Before we do, though, I want to say, I think it's, it can be worse for adults that are diagnosed, because I think they get sometimes even less. And we talked about this the adult diagnosis episode, and it's fresh in my head, because I just put an edit on the show, and I just heard it again. But that when you're an adult, sometimes you're like, here's the insulin, go to the store, get this prescription filled for needles, and then go see your Endo. And then you call the Endo. And then it was not available for 45 days,

Jennifer Smith, CDE 10:38
or worse, like six months. And in the meantime, they have you visit with, like, a nurse or somebody in between who, you know, there's, there's a definite disconnect for adults. Absolutely. And I think the other piece for adults is a lack of enough initial good information, but also, many times that adult is on their own. Right, they may not have a spouse or a significant other, or a family member who they're close enough with, that they could share this with and get someone to look in on them if you will, right. And that makes it harder, because kids who have a parent or a caregiver, there's somebody that's got their back, right consistently paying attention for them. Adults don't have that it is it is on you.

Scott Benner 11:30
And you can slide into a depression, you can just slide into a complacency. Listen, completely disconnected from from diabetes, my son just graduated from college, it's got a really good degree. It's a bright kid. And we told him, like come home from school, like, you know, just take a little time decompress, and everything, but now he's been home for about three weeks. And I had to go into him the other day and be like, Hey, let's get going now, right? Like, you know, he's he hasn't had your break. Like he doesn't, it's just as simple as situation where he doesn't know the next thing to do. And you kind of turtle up sometimes. And then this is about and then on top of that you're scared of low blood sugars are hot, you know, whatever. Anyway, this next person says, I wish someone would have just told me that you can drink water when you're high. And that will help you know. So that's an example. They don't even understand how hydration affects the way the insulin works. Right? Absolutely. So okay, I wish I had known that it would take some time to decrease a blood sugar, the initial one from the diagnosis number. And I really wish someone would have told me that my daughter might feel low in the hundreds. And and that even though the number was normal, she would feel like she was low, like that was never explained. Do you think people even understand that for the most part? I don't

Jennifer Smith, CDE 12:45
think so. And it's a it's a very good point that this person brings up absolutely, you know, when you when your body has grown accustomed to a glucose level, right. And at initial diagnosis, your body has gotten used to feeling nasty, and it just thinks that that's the norm add a blood sugar of let's say, 300 Plus, potentially. And with that being the case, once your blood sugar starts to come down, now that you're taking insulin, even drifts in blood sugar, not drastic drops, but just a drift under where your body's kind of been residing for a time can start to feel like a low blood sugar. Do you need to treat that? No, but it can be scary. Because it feels like all these symptoms you've been told to watch out for which indicate, oh, my goodness, my blood sugar is too low. But you look at your numbers, whether you're already on a CGM, or you're just doing a fingertip finger stick because you're curious what is going on, then the number doesn't look like it's in the low range. It can be very hard to know, well, what do I do about this? Yeah,

Scott Benner 13:53
and the idea that you will get your body will get accustomed to it after a while but you can't forget while you're explaining all this to people, the feeling is still real. Yeah, you you feel like your blood sugar's 35 and your blood sugar's 110. And it's it can take sometimes days and weeks depending on how long you've been high for your body to get regular. And feel that feel that way when you're in a regular number, I should say.

Jennifer Smith, CDE 14:18
In fact, when I was when I was diagnosed eons ago, things are very different. But there's no fancy stuff.

Scott Benner 14:27
My mom had to go outside and wind up the car to take her to the

Jennifer Smith, CDE 14:32
me sound like I'm like 90 No. But you know, I was in the hospital for a week, a full week. And they wanted me to have a low blood sugar while I was in the hospital, so that I could experience lows or a low symptom and know what to do about it with I'm assuming the idea that there was somebody there with me, and that they could help me see Yeah, how quickly it could be treated? how it would feel different once my blood sugar was normalized again. So I mean, that was part of my week long hospital stay

Scott Benner 15:12
was, did they announce? Or is it just like? Did they tell you? We're gonna make you low while you're here? Do you remember? No, no. Okay, just know. And then you realize

Jennifer Smith, CDE 15:20
I do? Well, they did say that I remember the discussion, you know, with my parents, we would like for there to be an excursion to a lower level, so that Jenny can get an idea of how that feels that you can hopefully be here at that same time. So that you can see how we treated and everything. And I did have a lower blood sugar. I mean, it was by no means low, low, but it was certainly low or dropping. I do remember how I felt. And but the good thing was that I got explanation. Yeah,

Scott Benner 15:52
right. And for the little things, you end up figuring out on your own like sub first, a lot of people you can feel a fall. So yeah, so you feel the fall before the numbers an issue and correct, you know, just stuff like that. It's great to learn these next two statements are interesting. They're made by two different people. And it's a great perspective in into what someone thinks before they've heard the podcast and what somebody thinks after they've heard the podcast. Oh, awesome. So this first person says, I wish they had taught us to use insulin without being afraid of lows. So that's a person who's now been listening for the pot to the podcast was like, I know now, how important using insulin is correctly. You know, the fear of loads is what was stopping me from using etc, etc. But then here's a person who is giving you a perspective from before they heard the podcast, I had way too much fear of insulin, they pretty much had me feeling like I was going to kill my son, probably within the first week. So so there you go, right. Like there, there's got to be a better way to. And I think we've gone over a lot of it already. But there's got to be a better way to let people understand how insulin works, other than just to say to them, don't do it feels like it's 1950. And they're like, if you smile at a boy, you're going to be pregnant. Yeah, exactly. Right. So there's the so if you're getting if you're listening to this, and you got that kind of information, I think you have to, you have to make the leap into the Pro Tip series and and listen through, so you can get an idea for how insulin works. So you can be use it in a more targeted way or a more meaningful way, you know, any way you you kind of want to think about it.

Jennifer Smith, CDE 17:29
Because then it does, it does for many people. And I would say, you know, with this topic of fear of insulin. I think I've seen more adults who have had a fear of insulin, tied with a fear to things being too low, then kids, and many times parents are very, I would say parents are very good about not projecting their fears onto their children write for them. For the most part. I mean, there are some that that's not the case for but I think parents are, they try very hard to internalize worries and fears so that their child doesn't see that as well, in terms of how to feel about something they're going to be living with right. Adults, however, again, are the ones managing their own health there, there may not be a secondary assistive person there for them. So the fear of insulin can be very real, when you're the only one who's got your back. Yeah. So you know, in that I think it does, it's learning about how does insulin work? And how does it work for you. And sometimes, as I've worked with people, sometimes it's getting used to even just knowing what small doses do. And then you can build on that, especially if you really just don't want to eat lettuce salads your entire life and who want to gravitate into other things that may require more insulin. Learning how to use more insulin should start in smaller doses then so that you can get a comfort level with what that does. And with less need to over treat, because there's not as much insulin left laying around. Yeah, right.

Scott Benner 19:21
Well, so here's the other side of it. Here's a comment one piece of well meaning but bad advice that I got from another type one was that a high blood sugar will not send you to the hospital, but a low blood sugar can so it's best to leave yourself high. So it's now it's better high than low, which you know, and then

Jennifer Smith, CDE 19:41
has very bad advice. Yes, very bad advice. Do not listen to that piece of advice.

Scott Benner 19:47
But But it's an interesting way of showing how when you get bad information at first it leads to fear and then you go out into the world. Because you think oh I know this thing that's going to save someone analogy. I have to go tell them. And now you the internet's interesting because when you're listening to someone talk, you have no idea if they've had diabetes for three minutes longer than you were three years longer than you. And when you don't know what you're talking about the first thing that said, you often you go, Okay, well, this person must know better than I do. You know, and that is the one. That's one spot where I'm proud of my Facebook group where people do speak up. And so you know, if someone comes in with a kind of a new idea, someone else will nicely say, hey, look, you know, we all get told that in the beginning, but here's the reason why you don't want your blood sugar to be high, you know, highs, cause lows, and etc. and stuff, you'll find out listen to the podcast.

Jennifer Smith, CDE 20:41
Though I do like in the group, too, that a lot of people are very able to point to either some of the episodes that you've done about specific topics and said, Hey, for a lot more in depth information. And really to clarify this question, listen, here, go here. Try this, right.

Scott Benner 21:00
There's a lot of I tell you, there was a moment where I realized I can't keep up with this, because it used to be me. Like during the day, I'd pop in and out and be like, Hey, look at episode this to do that. Or this? Have you listened to the protests? And one day, I was like, I can't, I can't, I don't I don't have the bandwidth for this, you know, and now, it's 24/7. Isabel helps me with it now, which is terrific. But at one point, I just said to the people in the group, I was like, if you see a question that can be answered by an episode, share the episode. And that's been very helpful for people. Okay, so then you see, the next person knows this and says, Don't accept high blood sugars as a norm, because you'll start looking at numbers and just going out 200, it's not that bad, you know, and that turns into 210, which turns into 250. And on the way, here's an interesting one, I was just told to take my insulin 15 minutes before my food to Pre-Bolus. So I injected 10 units of Novolog. On a 15 minute drive to get my food. I had a low on the highway. And and here's the kicker, I didn't even know insulin could cause a low, I wish someone would have mentioned that. So, obviously, obviously Pre-Bolus thing is very important, right, and to get your insulin timed well, and you'll hear that in other episodes. But this person, the information they got was almost good, like you need to Pre-Bolus. But the person never in their mind thought that the insulin could take them lower than they want it to be like imagine that like, it's right. Jenny, there's an app on my wall hold, I was gonna say it looks like you're looking at like this has to die give me a second.

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Jennifer Smith, CDE 26:17
I thought perhaps you had like water leaking from your ceiling or maybe ghosts on your ceiling or something.

Scott Benner 26:24
I'll tell you I might prefer to ghosts because I don't believe in those. And I would have just thought I just like dizzy. But I kept thinking like that thing's gonna crawl over my head and fall. Sorry. So you're big black and I've never had a plant in this room. I'm gonna have to sell this house. Okay.

Jennifer Smith, CDE 26:40
Now in the house. It is stinkbugs I don't know. I don't know where they have decided that their home is outside that they don't like but they come in our house and I don't care. I just take them outside. I boys who love bugs and love stuff. They hate stink bugs, they will come flying in and be like, ah, there's a stink bug on the ceiling in my bedroom. And I'm like, okay, who's bigger? You bigger?

Scott Benner 27:07
Think bigger? You know, they're an import. Right? They came here. Are they really i This is not what this is about? Okay, I want to say China maybe. But anyway, look it up. Have fun finding out. Okay. So the expert says safe numbers are not high. Even if doctors tell you that. I wish someone would have been, you know, clear earlier. Another person says I wish someone would have started in terms of telling me where to bring those numbers down. How do I do it with basil? Like, where to carbs fit in? Like they didn't have any? You don't? I mean, like the stuff that seems kind of obvious after you had diabetes for a while in the beginning. None of that's going to feel obvious, right? None of it like you know, when you

Jennifer Smith, CDE 27:49
because it's brand new. This is a concept that nobody has taught about at all you may learn in I mean, I remember learning about the tiny little I think it was two paragraphs in my human biology course in high school. And I myself having diabetes at that point, I was like, What is this bunch of like silliness? I was like this dude, no way describes, but I'm supposed to learn something from it.

Scott Benner 28:17
Yeah, in a way, it mirrors how little we tell people about nutrition even and like crap fueling their body. Everybody just is like, Look, I get up, I washed my butt. I get hungry, I put something in my face. And then 10 years from now, when I'm 40 pounds heavier. I go what happened? Right, you know, like, they get it. Yeah, nobody really understands how things work. And listen, I grew up really poorly. I grew up broke, like, my mom had $60 to buy food for three people, right for a week. And we ate, whatever, whatever we could. And it was Yeah, crappy food. And by the time I was an adult, as I was heavy, like I was just like, Mike Kelly and I were together and like, we didn't know what we were doing, we started over again. And you know, we were able to take care of it. But it's amazing how through your life. It's pervasive. You know, like we, how hard how easy it is to have a feeling of hunger and want to grab something that's easy in a bag or something like that, versus like, I'll let me have this orange or something to that effect. It just it gets burned into and you don't know it. And that happens with people with diabetes all the time. Because as we're talking about these newly diagnosed problems, I can tell you that if you don't figure them out early, you're going to be one of any number of people in their 20s or 30s or 40s or 50s who come on the show. Hold on.

Jennifer Smith, CDE 29:39
Jenny, somebody somebody was very importantly wanting to get in, you know, in touch with you.

Scott Benner 29:48
Walgreens again. So, so I've talked to too many people who have had diabetes for decades, who are still making the same. I don't want to call them mistakes but decisions over and over again. And when you then present them with this information. It's sad, because they think well, why couldn't someone have told me this five or 10 or 20 years ago? Like, I can't get this time back now, you know,

Jennifer Smith, CDE 30:14
and I, I think, and this is kind of a, it's a slippery slope to kind of, to walk on, honestly, because I truly believe that it starts when someone is diagnosed. And they are told if we're just talking nutrition, right? They're essentially told, you can eat anything you want, right? And just take insulin, when you're supposed to

Scott Benner 30:39
take it. I mean, that powering statement, correct, it's supposed

Jennifer Smith, CDE 30:43
to be empowering in that. You don't have to worry as long as you just take this thing called insulin. Well, I mean, it brings in a whole nother rabbit hole of discussion, though, of, well, you want your child or you want yourself to be eating and doing what do you see every other child doing? But is every other child eating the way that they should be eating? Right, whether they have diabetes or not, or as an adult? Are you eating the way that your colleagues are eating? Because that's what they're doing? And you're only following suit? Is that really? Do they look healthy? You know?

Scott Benner 31:21
Do you know? I don't know, do you know that there are three aisles in my grocery store that I don't go down, just based on the physical appearance of the people I see in the aisles. I just think I just look at them. And I think I don't want my life to be like that. I clearly don't need this is something in those aisles, is because because then they're I know, I'm I know, this is probably a weird thing to say. But then I look at other aisles where people see more fit. And I don't see them, I don't see these two people in these different aisles. And I'm like, I'm gonna go follow the guy around with the nice calves and see what he buys. You don't I mean?

Jennifer Smith, CDE 31:58
Sure. I mean, if you look at pictures, I mean, honestly, in the ages of development, since I would say, maybe the 1950s or 60s, potentially, when more like processed packaged convenience, stuff probably started to become more than the norm. If you look at pictures like beach photos from like, the shore or something, it is very difficult to see a body that isn't somewhat fit. Most of the bodies look like healthy bodies. Today's pictures would look very, very different. I mean, there's there's got to be something in the food, and how we are packaging what we are eating. That's creating a lot of issue within diabetes. Yeah,

Scott Benner 32:50
and how does it fit into this subject? It fits into this subject, because when you first have diabetes bolusing for real food is easier than bolusing for processed food. And no one's gonna mention that to you. No one. No, you this person says not knowing how fast or slow insulin could hit or not knowing that, hey, this could kill you. At first I was under the impression this is the part that's important. I was under the impression that okay, my kids going to eat and I got this robotic insulin dosing strategy and everything is just going to be fine. And so they were you know, they were told count the carbs, give the insulin, do it like this all just gonna work out. And it doesn't go the same way. And that leads people to say things like, Oh, it's just diabetes, or, you know, one day I eat the same thing. And then the next day I eat and it's all different. No one tells you that the next day your insulin site is a is a is a day older. No one says, you know, you had a, you know, you don't know, right? Nobody gives you enough the details. I had a burrito one day, and I did well with it. But I had a burrito the next day and it didn't work. Well. What did you make the burrito? The first thing was the next day was it from Taco Bell? Because, you know, that's but in people's mind, it's burrito burrito. And, you know, it's just anyway, it's important. This person says, and I'm proud of this, I wish I would have known what Scott says that trust. What you know is going to happen is going to happen for Lowe's. When I treat Lowe's i You need to trust that it's going to work the way you know it's going to work. Otherwise, you're going to create a rebound high afterwards, right? Which can ruin a day. Safe numbers aren't high numbers. My first big concern was hypose. It's what they really hammered home in the hospital she needs to eat this exact amount of food has to be weighed or she's going to have a Hypo. And the person says But what I learned is this hypose are actually pretty straightforward. And they're only a massive pain when my daughter's asleep. High blood sugars produce far more fear me now. I assume there was only an issue with high blood sugars with the out she assumed that high blood sugars were only a problem if there were a presence of ketones and now she He realized that that's not right. So they didn't think a high number was a problem in less ketones were present. Right?

Jennifer Smith, CDE 35:08
Which is often when I mean, there are two angles, right, really low blood sugar fear that really high blood sugar, ketones fear the potential of DKA. But you may have high blood sugars that are just within the realm of high enough without producing ketones, that now you're leading into, if there's enough consistency to it, you're leading into continued damage, right? Long term,

Scott Benner 35:38
this next person says, I wish I would have known that every time the blood sugar shot up, I didn't have to check for ketones every single time like every time this kid gets a blood sugar for like 200. There, they're testing ketones, and there's episodes on ketones and how to understand them. This person's quoting the podcast says instead of beating yourself up When blood sugar shoot up or down, figure out why and try to prevent it next time take this as a learning experience. But you have to know it's not going to be perfect. You know, maybe never, and definitely not in the beginning. You know, and just to speak about that for a second. These things are going to happen right there, you're not going to stop them from happening. There's two, in my mind, there's two responses, you can panic and beat yourself up and be like, Oh, I did it wrong. This sucks. I'm never gonna figure this out. Or you can just realize there's a learning experience happening in front of you, when you step back, take yourself out of it for a second and look at it, I put the food in here, I put the insulin in here, this is what happened next. I bet you if I would have done the insulin a little sooner or a little later, the food, you know, etc. If I would have just slid these things around in the timeline of my eating. I wonder how that would have impacted these bell curves that I'm seeing all my CGM? Are these numbers I'm seeing right here. Right?

Jennifer Smith, CDE 36:51
It is I mean, diabetes, I've I've thought for a really long time how diabetes is it is like a daily science experiment, if you will, right. And sometimes those days, you're given the same little petri dish with, you know, like orange growing spots. And because your day is similar enough to the days before, the dots keep growing purple, because you got it, you've kind of figured it out, you know, your timing, you know what ends up happening if you do it this way, or that way, and then comes in a day where the dots turn orange and purple for free, and whatever, by the end of the day. And usually there's a variable in the picture that you've not encountered before, or was something completely different that you've just, you know, you've never had that burrito from Johnny's corner spot. You know, so

Scott Benner 37:44
it's pretty learn as the person says, I wish someone would have told me to always carry snacks, supplies and emergency treatment with you. I am frequently thrown by how many people don't travel with at least a juice box extra or their meter. Sometimes there's stuff like that, like, I've talked to people, like I don't need my meter. I'm like, How do you know that? Like, if you know that, then this whole thing is easy. Like, like, because you can predict there. It freaks me out a little bit like, you know, yeah, if we drive. If we drive more than 30 minutes from my home, or we're doing something like you're going to go somewhere 2030 minutes away, but you plan on being there for three or four hours. I always say to my dorm, I take a pump with you a little bit of insulin to pump up like you don't want this whole day to be ruined. If something you bang into a door and your pump pops off or things stops working. You don't want to have to stop what you're doing all the way back here. That's big picture stuff. Little easy picture stuff is you need your meter with you all the time. You need your like, I'm fascinated by people who travel without the controller for their insulin pump. Like Well, what if you need insulin? I'll do it when I get back. When you get back. What are we talking about? Like, like, but no, like, and but for lows? You have to have a way to stop a low with you. Yeah, and not just one way. Like, like, many maybe yeah, because what if you drink the juice and it keeps going? Is you know, like, I mean, there's a difference between being paranoid and being prepared? Correct. You need to be you know, in a modern society. You know, somebody in America, who's living in a house where foods readily available, I get, you know, go into your neighbor's house or something like that. Not feeling scared, but you don't start getting into cars and driving to locations where, like, yes, there's a Wawa on every corner. I mean, you know, we're some sort of a convenience store but you're not in there if your blood sugar starts dropping and you're driving your car,

Jennifer Smith, CDE 39:40
correct. So absolutely. I know at the in the turn of a season usually like from from winter into like spring summer. I have different persons, if you will, that I might use and I always end up having to like dig in the pockets of the purses, and fish out like the really old glucosuria cuz they're like, you know, the sugar sort of starts to get harder and whatever. And I'm like, yeah, it's time to change those out. I would eat them if I had to, but they probably aren't gonna taste very good.

Scott Benner 40:12
juice boxes in the pockets, the door pockets of our cars, right? Yeah. And one time we got down to the one where you, you're looking at you think I can't believe this is holding the liquid anymore like this should have been thrown away and replaced. It's like the squishy. Yeah. And we had to give it to Arden. And even when she took the box, she went, Oh, this is gonna be horrible. And I was like, sorry. And you know, and it'll work. It'll work. But it was like syrup. It wasn't even like it was bad. And she's she was looking at us like, You got to be kidding me. I was like, I tell you to replace these things. No one listens to me. So there you go. Here's an interesting one. I felt like I was bringing home a newborn baby. We talked about how diabetes can feel like a newborn baby. But she said that the first low that that she saw was a 74. And they were running around their house like a lunatic. Like we have to stop this. 70 for every minute, which

Jennifer Smith, CDE 41:06
can be scary if it was falling fast. Or if you'd never seen that valley that's absolutely contextually.

Scott Benner 41:11
Absolutely, but in a situation where you're looking at a fairly stable 74. And you're thinking like, life is just about to end. You know, like, you know, it's when I say this sometimes because it's the one thing that I feel sad for people, but it does make me like laugh a little having been in this game for so long. It's when you see somebody like show a graph. And this kid's you know, blood sugar super stable, and then it dipped down to 80. And then the caption says, like, I saved their life with a cookie and like, what

Jennifer Smith, CDE 41:44
it could have, how much it was gonna dip out?

Scott Benner 41:48
Yeah, but but like that idea. But it really what it outlines is that people just are not given accurate depictions of what a good blood sugar is. And, you know, right, I have an email that I've been going back and forth with this gentleman about that. I think this is a great place to put this. He said, I've been trying to keep my kids a one C as low as I can blood sugars as low as I can. But then I ran into this person in the diabetes community who said, No, you can't do that. Because, you know, a blood sugar under 55 causes brain damage. And I always hear those conversations. And I'm like, I'm like, I don't think anybody really knows. But it's a hard thing to respond to. Because I don't want to be the person who says I don't think a 55 blood sugar is gonna give you a brain damage. But I don't want to say that out loud. In case I'm wrong, you know what I mean? But I mean, I don't want my daughter's I don't want your blood sugar to be 55 Jenny, right. No, no, I don't want it to be 55. Doesn't feel nice. But should it sit there for a couple of minutes?

Jennifer Smith, CDE 42:46
That is the couple of minutes. It's kind of in theory, the idea of cumulative time is just like highs, right? So the idea of deprivation to the brain, over long periods of time are consistent over days and days and days of consistently having hours worth of low blood sugars. There is research about brain health, especially in kids. Absolutely. But if your blood sugar dips to 55, and I've certainly had 55 blood sugars, and I don't think that I am brain damage, do I sound brain damage?

Scott Benner 43:21
No kidding. No, you don't set yourself okay. Well, the way I ended up responding was I said, Look, you know, as we went back and forth, and I got contextually better what they were saying. I said, Listen, no one is saying that your blood sugar should be 55 for hours or right. You know, like I said, low and stable. A one sees not not like a life where you're like, oh my god, I'm 40 Oh my god, I'm 400 Oh, my God. Like, that's not good for you. I said you want stability? But if you can't, if you can't achieve an 80 blood sugar without it becoming a 55 you're not using your insulin correctly.

Jennifer Smith, CDE 43:58
Right. Right. And something needs adjustment. Absolutely.

Scott Benner 44:01
Right. So anyway, I mean, I don't know about I agree with what you said, I would not want any, I would not want any measurement in my body to be way off for a long time, right, your thyroid, your thyroid hormones too high for a long time. It messes you up as a human being right? If it's too low, it messes you up as a human being your blood sugar the same way. But you know, we talked about it earlier, you have diabetes, you're gonna get low at some point, like, it's just you're gonna get you're gonna, you're gonna do something, and your blood sugar is gonna be 401 day and it's just gonna happen and your blood sugar is gonna be 55 one day and it's just gonna happen and you are going to be in a situation more times and you care to count your life where you actually think you saved your life with a cookie. Right? Like it is. It is gonna happen. And yeah, you know,

Jennifer Smith, CDE 44:48
I think that's a value to these days of definitely having the technology specifically the CGM technology that we have, because you do have a little bit more visual in terms of that line of sight, right? Where are you? Where are you? Are you stable? Are you stable and sitting at home doing not very much, okay, then great. If you're sitting at, you know, 82, you're probably not going to treat that. Because you're stable. What's wrong with that? If you're 82, and you're going to head out on a 10 mile bike ride, you probably don't want an ad to blood sugar unless you've done something that you know, is now going to hold that sable at that level, right?

Scott Benner 45:29
Here's a couple of other things that are interesting to look at people's brains and how they work back and forth, like people are different, right? This one person says, I wish someone would have told me what happens when you go low, how low is gonna make me pass out what's going to happen in my body, then I wanted that information. But the next person says, here's the thing that messed me up, I thought the smallest mistake was going to kill me. And it created panic attacks. And so they go to different people in a similar situation, they want different things, different things. And that is, in the end, why you have to go out and advocate for yourself and look for information because the doctor doesn't know if you're the the person who's gonna have a panic attack. Or if you're the person who says, Hey, what's gonna happen to me after I pass out? When's that gonna happen? And those numbers are different for everybody. I've seen Arden have a seizure at at, I think 20 was a blood sugar. And I've seen her talking to me when she's 28. Like, there's nothing wrong. So I don't know what to tell you, you know what I mean? It's, it's, there's a it's a theater line, like it's, it's like you're, you're dimming a light. And there's a moment where you still have plenty of room left on the dimmer, but the thing just goes off you go, Oh, that was weird. And, you know, so here's what I would tell people is, I don't want my daughter's blood sugar under 70. If I can help it, I treat it when it looks like it's gonna go to 65. I treat it more urgently when it's under that number 6065 55. I think we've messed up pretty good here. And you know, lower than that, she's going to start becoming incapable of helping herself like it's going to start to get worse and worse. So Right. You know, to me, 70 is, I

Jennifer Smith, CDE 47:09
think another thing that goes along with this too, especially for kids is I've had a lot of parents tell me. I asked my child how they're feeling. And they say I'm fine, Mommy, I feel just fine. The kids, kids don't really I don't know that there's necessarily an age of awareness of symptoms, that they're, you know, that it starts to be like age eight, they'll definitely know what a lo feels like, right? thing for every child or teen, it's probably going to be a little bit different. But a lot of parents worried because their children just have no self awareness of symptoms. And that's hard. Because, you know, I know myself when my little kids get really busy with their Legos or whatever like they are, sometimes I have to call to them like three or four times and get their attendees are so into what they're doing that that awareness of other things is completely not there.

Scott Benner 48:08
And your kids don't have diabetes on top of No, so no. Do you have a little time or you have to go? Get a little time? Okay. The other person's I guess we need an episode on this the research about blood sugar numbers, what is actually less likely to cause long term health highs or lows. I mean, I, I don't know how scientific it is. But I I'm more worried about highs than lows. You know, for a long term health especially, I mean, short term, a low blood sugar gets right now, but you know, long term, I think it's I this is interesting, I focused so long on this, and I don't think I should have the perfect math. She says we were seriously so scared to give a little too much insulin like even by a tiny bit. And then quickly, they realized that everything was sort of a best guess to begin with. I used to on the old Omnipod PDM, you had to hold this arrow up to make the carb count go up. And yeah, and it would like get to, you know, I didn't really count carbs at that point at all. So I was like, Oh, I'm gonna do four years for this. And I'd hold the button. And if it's not there, four and a half hours I can that's fine. It's close enough. Now for little little kids a half a unit. It's a big deal. Actually, a woman made up point in an earlier statement that I never brought up. She said I once took a unit of insulin out, put it in a spoon and then I took 10 units of insulin out put it in the spoon she goes and it freaked me out at how similar those two amounts look. And I thought Yeah, it's it is interesting, isn't it? But in the you know, obviously in a syringe, you can see it better, but Right. That's just an interesting one, right? Like it is. I see people all the time, like, well, I made a Bolus that was 4.1 and I think it was too much and I'm like, but I guess all right, you know, as your as you get bigger and you require more and more insulin, those times

Jennifer Smith, CDE 49:58
one isn't going to make Hello. Which is the reason that many people, you know, especially pumpers get frustrated when they're trying to correct higher blood sugars. And their pump is recommending something like point two units. And they think well point to like, 1.2. What's the purpose of that? It's not going to do anything to help me at this point, right? Yeah. And that's when they get more aggressive. And then you're like, Oh, well, I clearly should have taken the point too. Instead,

Scott Benner 50:26
this person says, I wish someone had told me that my eyesight was changing when I got low, and that it would come back. Like I guess, from dizzy. And also, she said, conversely, I had been high for so long, that my eyesight had gotten bad. And that as I brought my blood sugar down, that change, that was scary. A person here says, I remember thinking that if she's still low, like, do I still do insulin, like when I feed, you know, like, like, okay, she's 60. But she 20 carbs. And we talked about pipettes all the time, you need to cover the amount, there's an amount of carbs to fix the low, and then there's amount of carbs, you don't need some of that needs insulin correct. And, and this one's interesting. I was told there was a three hour rule that we couldn't give any insulin unless it had been three hours since the last dose, this caused many high blood sugars for us, was not explained well. And and it seems like a big one for newly diagnosed people. And I think you should bring it up. She said, so. Yeah.

Jennifer Smith, CDE 51:26
And I think I mean, we talked about stalking, I think recently in an episode, but that kind of goes along with initially, the idea that once insulin, it upon diagnosis, once insulin is starting to be injected, they're very cautious, assuming the potential for honeymoon. So what they're looking for is, let's give a timeline of what we're expecting this rapid insulin dose to work over. And let's be careful about not adding extra within this. But as you know, you always say if you've done it enough that you know that, oh, yesterday and the day before I didn't do anything, except after three hours. And her blood sugar just sat high. Yeah, clearly, there was more insulin that was needed there. So more insulin,

Scott Benner 52:19
you're gonna get into that in the next episode of this, because the next thing we're going to do is the 1515 rule. So we'll get to talk a lot about that. But we're done. We made it through there were a lot of questions in this one. And we chit chatted in the beginning about personal stuff. So I'm pretty before we started recording. So I'm very happy with what we got today. Thank you very much. Yeah, absolutely.

A huge thanks to Ian pen from Medtronic diabetes, and the contour and the Contour Next One blood glucose meter, head over to Ian pen today.com. And contour next one.com forward slash juice box to learn more about the ink pen and the Contour Next One. Just check them out. They're both terrific. Thanks to Jenny. Don't forget Jenny works at integrated diabetes.com. If you'd like to hire her, I hope you're enjoying the bold beginnings series. There's much more to come. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

Hey, if you're still here, don't forget that juicebox podcast.com. diabetes protip.com is a place where you can learn more about the podcast in general find all the different series. There's a Facebook group for the podcast that has I think 27,000 people in it. Now we're getting close to that at least Juicebox Podcast, type one diabetes on Facebook. It's a private group. So you'll have to answer a couple of questions before you're led in. Oh, oh, you know what else in that Facebook group at the feature tab at the top, there are complete lists of all of the series that exist for the podcast. And I guess I gotta find a way to get those lists on juicebox podcast.com to I'll work on that. All right. That's enough Chitty chatty right. I hope you're enjoying the podcast. If you are tell a friend. And don't forget to subscribe and a podcast that don't just listen, subscribe or follow in like Apple podcasts, Spotify, Amazon music, something like that. You should be able to find a great free app that you can listen to the podcast in. Alright, I've said it before. I'll say it again. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.