#193 LIVE from JDRF South West Ohio Type One Nation Summit
Scott Benner
Recording in front of a live audience…
Scott interviews a fighter pilot and then talks type 1 diabetes management strategies with a huge crowd. Audio is different than you are accustom to..
You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Alexa - google play/android - iheart radio - or their favorite podcast app.
+ Click for EPISODE TRANSCRIPT
DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello, and welcome to Episode 193 of the Juicebox Podcast. This is a bonus episode. So if you haven't looked back in your player for Episode 192, it's there too. It's called bolusing, cursing and tacos. What you're about to hear was recorded live at the Southwest Ohio chapter of the jdrf. There I spoke at their type one nation summit, to a room full of people, I'm telling you, they're high to open 500 people in that room, it was absolutely exhilarating. I can't wait to do more live events like that. You don't get the greatest audio from it. But you do get an amazing experience. So I want to thank the Southwest Ohio chapter for having me out. guys ran probably the most well attended best organized event I've ever been to. And being there made me want to do it more.
Unknown Speaker 0:57
This session will be recorded, and you can listen to it online on the Juicebox Podcast. Alright, now's the time you've been waiting for it is our live Juicebox Podcast. So I'm gonna turn it over to none other than Mr. Scott.
Scott Benner 1:19
Oh, my gosh. Thank you so much for coming out for supporting the jdrf. And for being even remotely interested in some of the things I'm going to talk about. My daughter was diagnosed when she was two years old. She's 14 Today, after a number of years of struggling with her a Wednesday being in the eights and you know, eventually got an insulin pump, got into the sevens, got a dexcom got down a little farther. And then we got stuck. And then one day my nurse practitioner told us something that really just changed everything for me. I asked her What's the hardest part for you your job and she said, it's to stop people from being afraid of insulin. If I could make people not be afraid of their insulin, they would have better outcomes. I took that very seriously. I thought about it for a long time. I wrote about it forever and ever online. And then one day I started a podcast now the jdrf would like me to tell you does anybody here listen to the show? Thank you. Nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before being bold with insulin or making any changes to your health care plan. We're going to interview mark in just a second. And we're going to trans kind of translate from Mark into some slideshow stuff. But just very quickly. That's my daughter Artie on the right when she was four when her when she was probably nine. Now she has last summer. She's 14 right now, Arden has no diet restrictions, or a one C and I only tell you this to you for the purposes of what we're doing here today has been between five, two and six, two for the last five years. Arden eats everything you can imagine. pancakes, waffles, Chinese food all times the day and night. And we manage to get that a one see through understanding how insulin works. So I'm going to invite Mark Lily up. We're going to talk for a little bit about his story. And then I'm going to tell you a little more about how we handle it as much sugar. So I'd like to give a big round of applause to mark. You want to say? Yeah, I think so sitting I'll look less short if Mark sits next to me. More hair. So the podcast is conversations with people just like you. As a matter of fact, has anyone in the room ever been on the podcast? Cool to work? Can you introduce yourself to everybody? Hi, everybody. My
Mark 3:41
name is Mark Luli. I'm a type one diabetic. I was diagnosed March 7 2005. And I'm also the father of a type one diabetic. My son Charlie sitting over here was diagnosed two years ago. Okay, so how old are you when you're diagnosed as 29 years old?
Scott Benner 3:55
- That has been incredibly shocking. Yeah, so
Mark 3:58
at the time, I was a fighter pilot in the Navy. I had been a pilot for about eight years came back from my second deployment to Afghanistan and Iraq. And my wife and I were getting ready to move to France for three years, I was going to do an exchange tour with the French Naval Air Force. So we are living in beautiful Monterey, California taking French classes for six months, five days a week, not a bad time to spend your your days. And so a couple things were happening and ended up going into the hospital. And after a week in the hospital. I found out that I was a type one diabetic and that I would never fly again and I'd had to leave the Navy. So it was it was devastating. So you may not know that
Scott Benner 4:36
mark lost his pilot's license for certain crafts right. Like there's some stuff you can still do.
Mark 4:41
Yeah, as well. You can be you can you can get your private pilot's license and be a type one diabetic and Scott has interviewed a pilot and a previous podcast. You cannot be a commercial pilot and you certainly cannot be a military pilot with Type One Diabetes. Okay, so
Scott Benner 4:56
there are people in the world working towards changing that. And I actually interviewed a gentleman a few weeks ago, who's one of them. And I don't know if you know, but very recently, the laws have been overturned about CDL license. So used to not be able to have one of those with type one, but now you can. So people are always doing good work trying to move things like that forward. But I want to ask mark, so you're diagnosed as an adult? I can't imagine you thought you were getting diabetes. Did you have any of this in your background, your history
Mark 5:21
now, no family history at all. In fact, the only I guess the only history we had is my father in law as a PhD. And he worked on diabetes related medicines for years and years and years. And, but but no family history of type one diabetes, and so we lot of medical background of my family. And so you know, as those who have type one, diabetes, you know, the symptoms, I had the classic symptoms, I was urinating a lot, especially at night, there were times where I was getting getting confused, and I couldn't really explain it in my vision went from 2010 to 2070. And so, you know, we had some conversations, my wife and I, and we talked to my parents and her parents. And so we remember someone one of them saying, you know, that sounds just like diabetes, but you know, we just assumed type two diabetes, and I did not fit the profile of type two diabetes at all. So it really was a shock. Okay,
Scott Benner 6:15
so and no other endo issues like celiac or hypothyroid. Nothing at all. So So Mark was blindsided, much like most of you, I imagined were. What did they give you in the hospital? Start your management with? Did you leave with pens with needles? Did anybody talk about an insulin pump? How did that go?
Mark 6:33
Yeah, so it was interesting, because I was not in the military hospital, I was in a civilian hospital and Monterey and endocrinologist actually thought I was a type two diabetic. So he sent me home with I think it was glipizide, which is a type two diabetes medication, and just said, you know, take this for a week and see if that has any impact on your blood sugar's and of course, it didn't have any impact whatsoever. So after about a week of doing that, we went back in and then they obviously discovered that I was not a type two diabetic, I was type one. And so I left this facility at that point with, you know, pen, pen, needles and those type of things, relatively basic instructions. And we're kind of left to our own devices. And it was frightening, it was absolutely frightening.
Scott Benner 7:15
So there was no, this is how insulin works, or this is what you should always count your carbs, inject this insulin, wait three hours test, that that was pretty much it. I
Mark 7:26
characterize it, as they gave us a bunch of pamphlets, they fed us a whole lot of information that we just could not necessarily ingest. We were not in the right mental state to be able to do so. And I felt like we were dealing with people that were not used to type one diabetes whatsoever.
Scott Benner 7:42
So here's what I think. I think that doctors know you're overwhelmed when you're first diagnosed, and they give you what I call, don't die advice. It's just enough advice that you won't die. You know, you can't hurt yourself too much with the insulin, it's not about keeping your blood sugar and level, they don't tell you how things work. It's probably fair, right? you're overwhelmed, you're probably confused. The lots going on. The problem is that in subsequent visits, it doesn't get ratcheted down at all places. Some some Enders do an amazing job. But more often than not, you get what you got, which is go figure it out for yourself, do your best, and how did you do in the beginning.
Mark 8:18
So it was rough, because it wasn't just, you know, trying to understand diabetes and deal with the physical aspects of it. It was I you know, for me, personally, I had to deal with with the mental part of it, not just diabetes, but the fact that, you know, being a fighter pilot is all I'd wanted to do in my life. I mean, since I was a little kid, I'd always known and always wanted to do that. And suddenly, without any warning that was taken away from me, and there was nothing I can do about it. And that was, you know, for several months after that it was it was devastating. I mean, I wasn't a, what I would consider fairly severe state of depression, and and really didn't know what to do. But at the same time, I had to learn how to take care of myself. And you know, I'm blessed with a wonderful wife and an incredibly supportive family, who's who's, you know, able to do that with me. So I knew I wasn't alone. And without them, there's just no, there's just no way I'd be here.
Scott Benner 9:13
And so I think what Mark is characterizing here is that he was afraid just like he probably should have been, and he needs some sort of support. So what I'm going to tell you is that no matter where you get your support from I'm sorry, I didn't mean to ignore you over here. No matter where you get your support from, it has to come from somewhere, you have to have some sense of community. There are people who live in the middle of nowhere who listen to the podcast, and they think of the people that they listen to every week as their their community. It could be a friend and neighbor. It could be someone here for the jdrf. But I really want to implore you, it is very important to be connected to someone else and to not feel alone. But that's not the entirety of what you need. But it's a really good start. The next thing you need is the fear aspect. It has to go away at some point. So I'm going to ask Mark about something because I think Mark probably has an experience overcoming fear like no other. I don't know about the rest of you, but this man can get into a machine and make it fly off the ground. To me, that sounds incredibly frightening. I would never do that. I think he's probably crazy. But that's fine. Okay, but I want to know about that I want to know about when you're faced with incredible fear, what are the steps you take to get past it?
Mark 10:20
You know, I don't know if I've got a recipe a few that I can share. But what you know, what I do remember is I've never flown before. So I graduated college and became an officer A few days later and went down to Pensacola for flight school. And I remember, you know, I take my lunches by the runway, and I would sit and watch these pilots learning how to fly and they would start the engine and you know, off they went. And I just, I just thought, like, you know, how the heck do they know how to do this, it seemed, it seems so impossible, and so daunting. And then I started going through some of the academics of how to fly. And then I started learning some of the basics of flying and doing my first flight. And then I realized, like anything else, you gain confidence through experience. And so I learned how to fly a turboprop aircraft. And then I went to do initial jet training. And I thought the same thing again, Oh, my gosh, how did these guys and gals do that. And then again, I just started, you know, some of the basics and you improve and you improve. And then you get to a point where you feel like you're very confident, you know, you really understand how to operate in an ambiguous environment, and you actually look forward to taking some additional steps. So I felt like that when it came to diabetes, eventually, when I was diagnosed, that it was so incredibly daunting, and how am I going to have to incorporate this into my life, but just like, you know, I reverted back to when I was in flight school. It's not something I knew initially. But as I learned more, I gained confidence. And I just felt like that's what what was the secret for me to control my a one C's to make sure there are less volatile, and to make sure that I could incorporate Type One Diabetes into my life without having it ruin my life, if that makes sense.
Scott Benner 11:59
And I'm going to be here today, and we're going to talk a little bit about how to translate those ideas to type one. Because it is very true. This is all about experiences that you have to have over and over again until you don't have to think about them anymore. And then it's hard to imagine for some of you maybe but it comes it really does. I sit before you. I tell you I was standing in my shower crying most days when my daughter was diagnosed at two I didn't know what she was doing. I couldn't figure out what was happening 12 years ago, no Dexcom she had a little tiny meter and some needles. And that was the whole thing. She weighed 18 pounds when she was diagnosed. And I spent most of my time in that unsure place. It took me a long time to realize that all the things that I would have back then characterized as mistakes or problems ended up being the learning experiences that I needed to make better decisions moving forward. But one thing you have to do for yourself is lose that verbiage that says, I messed up that this was a mistake. It's not it's always just data for next time. It's just incredibly important. So Mark, how many years after you were diagnosed? Was Charlie diagnosed.
Mark 13:07
So Charlie, who's somewhere around here, he should be sitting here but he's a rascal. So I apologize if he's underneath your table right now. He was diagnosed in December of 2016. So my family and I was living in Singapore. And we woke up one morning and he had he had went to bed, which is extremely unusual. And so later in that day, we were getting ready to fly to Cambodia. So we're going to take a four day vacation with our with our kids to Phnom Penh. And so I actually my wife and I decided to test him using my glucometer and and then I saw the number we knew right away he was in the four hundreds we knew right then and there that he was a type one diabetic. And I tell you that when I was diagnosed, when I was a pilot, that was the second most devastating moment in my life, that you know that the most devastating moment is when Charlie was diagnosed because it's, it was one thing for me as an adult, you know, I'd achieved my dream and it was difficult to transition. But I was able to do that. It's a whole other ballgame. a whole other ballgame when your child is diagnosed with this disease. So, you know, even though Heather and I were very experienced with Type One Diabetes, there was a lot of learning that we had to do. You know, with a child now who has it, which is a far different experience than than when I was diagnosed. So we actually it's a little bit of a funny story, but we ended up going to the endocrinologist. And you know, he's we told him we were leaving for Cambodia later this afternoon, you know, what should we do? He said, Listen, I would never, I would never do this with another family. But you know, Heather, you're a nurse, Mark, you've had Type One Diabetes for years. You guys really understand this. So let me go ahead and give you some of the basic equipment. You guys go to Cambodia and have yourself a great time and that's exactly what we did. And we're thankful for it and we're lucky or fortunate. Maybe not I wouldn't recommend that to most people today. to Cambodia, you know, the same day that your child is diagnosed. But but it's also that's how we've chosen to incorporate type type one diabetes in our life. We don't let it control us, we're very much in the driver's seat. And that would be one piece of advice I would I would give folks in the room here today, I would
Scott Benner 15:17
have to add to that as maybe delicate as Arden looks in her picture, I'm not sure that little kid was two wins away from going to a Little League World Series last year. So she plays softball in incredible heat 100 degrees 345 times a day, starting at six in the morning and not ending sometimes till seven. She does that without crazy lows. And I really do think that marks words should echo in your mind that there's nothing you can't do. It's tough sometimes. Let's make fun of Mark from it's tough sometimes, where a handsome man here who can find the place it's in front of you and tells you this is all doable, right? I even think Whoa, I can't fly a plane, this guy must be smarter than me somehow, right? But the truth is around diabetes, it doesn't matter. That's why they brought me here. I can do it, you can all do it. Right? I'm telling you, there's nothing special about me. I'm not good at math. I wasn't a very good student. All I know is how to use insulin. And I'm kind of good at explaining it to other people too. So we're gonna get to that part. But I really want you to believe moving forward, that when you have the right tools, and the right understanding the sky is absolutely the limit is 100%. is I want to ask you, do you guys use pumps or kind of technology? do you use?
Mark 16:30
Yeah, we do. We use insulin pumps? Both Cheryl and I had the same pump.
Scott Benner 16:33
Okay. And are you using the glucose monitor? We do? Yeah, we
Mark 16:36
use the Medtronic 670 G. So the closed loop system,
Scott Benner 16:39
okay, and my daughter uses a Dexcom g six, I'm going to tell you that the data that comes back from the glucose monitors, makes what I'm going to talk about later, a lot easier. It's not not doable without the technology, it just takes longer without it because you're a little more blind than you would be with it. Can you tell me a little bit about your management style? Do you I know already. But Mark, you don't shoot for the same a one ci shoot for Right. Yeah. And
Mark 17:03
I think it's Listen, I think the important point is, listen, there's a range of a one sees that are acceptable. And I think what you what each person needs to do, which each family needs to do is decide what is what is good for you. How do you want to manage this, you can be all over this 24 seven, actually, for those of you who are in the previous sessions here, yeah, I sat through the one Chris, who's the power lifter of Chris really manages this very strong. But even you know, he said, You know, he fluctuates between about six, five, and maybe a little over seven. That's exactly where I tried to be that works for me. It allows me to do the things that I want to do in life without making it so overburdened some and and having to think about it so much. The beauty of the technology out here, whether it's Medtronic or Dexcom, or anything else, you want the technology to do the work for you. So it doesn't manage your life, right, you're managing your own life. And that's what Charlie and I had done that that was the reason that we put him on the pump that he's on, so that he can see me go through all the same motions and you know, insertions and sensors and all that kind of stuff. In quite honestly, some there's times when we share some of the same pump supplies, which is as a
Scott Benner 18:15
giant company, it's fine, hopefully, but,
Mark 18:19
but it just, it makes it much easier. And then and then Heather and I are both very, very comfortable with managing with the pump that I have, which makes it that much more comfortable managing the same pump that he has, and I want you to be sure,
Scott Benner 18:31
please hear me when I say this, he don't imagine my daughter's blood sugar is at 8524 hours a day, it is not her blood sugar spikes a couple of times a day 151 80 we get it back pretty quickly. And we keep her at a lower number. You know, I don't worry about being low, I don't start thinking about low till 70. But that's that it's not a perfect system, I don't want you to think that her blood sugar just goes like this. And it's magic. It's not showing something, we'll miss a little bit on the inside on both, and we readdress and I'll talk about it later. And maybe you guys can incorporate a little bit into your life. But I want to thank you very much for doing this. Thank you very much.
Do you guys accept blood sugars that are higher than you want? Because you're afraid of lows? That happened? Anybody I understand that completely. And you probably should be a little concerned. Diabetes is not easy and insulin is to be respected, but it is not to be feared. The problem is, is that when you err on the side of caution, you're always going to be a little higher than you want to be. And then you sort of get used to it right? Like you know a lot of people get told at the doctor's office that you're fine anywhere between 80 and 200. They tell you that a lot when you're diagnosed. The problem is that makes 200 seen in range when they while that's double what somebody in the audience who doesn't have diabetes, this. The problem is when you get to 200 then you start thinking about 220s Okay, it's so close to 200 And you sort of talk yourself into it eventually. The key to this is understanding how the insole works in your body. It is the entirety of it. If you leave here not remembering anything, remember this, you have to Pre-Bolus your food. And the entirety of managing Type One Diabetes is timing and amount, it has the right amount of insulin given at the right time. All of the other variables don't matter as much as timing and amount. We're going to talk about it try to make sense of it. These are not mine, I stole them offline. The one on the left is with a post from a mother who said I can't figure out diabetes, no matter what I do, this is what happens. And that's just diabetes. She said, I'll never forget that. She said that, that's just ID. So what I did was I eliminated carbs out of my kids diet. Now look how good they do. And I thought, well, that doesn't sound like a lot of fun not eating carbs, because carbs are fun. As you can see, I've had a car before. And there are a lot of fun. That's just diabetes, I am here to tell you. That's not just diabetes, when she says that when anyone says that, what they mean is I don't really know how the insulin works. And I'm doing my best. And I'm trying, but I just can't get it right. And I need to cut myself a break. So I'm going to put it on somebody else or something else, I'm going to put it on diabetes, it's just incredibly important to know that if your blood sugar goes up out of nowhere, it is not the magic diabetes failure that came along and tapped you on the head. So I'm going to tell you a story about m&ms. And I'm going to hope that by the end of this, I'm going to be your MLM story. A very long time ago, my daughter and I were in her endocrinologist appointment. And the as was before glucose monitors, right as Dexcom was getting started. And she said, Are you guys gonna get a dexcom? And I said, I don't know what that is. And she said, Well, there's a 17 year old boy in the practice, he got one because he wants to eat m&ms without his blood sugar going all over the place, tells me that what happens is the boy goes out, he buys these little packs of m&ms the ones you get at the register by the cashier, and he buys a bunch of them. And the first day he goes home, he gives himself his insulin like he always does. He eats the m&ms and he watches what his blood sugar does, it went up. So the next day, he gave himself more insulin, and it went up less. And the next day he gave himself more insulin, it went up less, but then it got low. So the next day, he gave himself the insulin sooner but a little less, and it went up less and it didn't get low. And he kept doing that for a week. Until one day he put the insulin at m&ms and his blood sugar just stayed like this. And when she told me that, I thought, well, that means it's possible. If he can do it with m&ms, you can do it with anything. I'm going to figure out how to do it with everything. So you have to stay off the diabetes roller coaster, you can't be chasing your blood sugar around. That sounds easy for me to say. But it's true that begins with Pre-Bolus in your incent those of you who are injecting Pre-Bolus things just the word people with pumps used to indicate they've given themselves their insulin before they start eating. Does anyone here understand that? When you put the insulin in your body, it doesn't immediately start bringing your blood sugar down? You do. But do you know how long it takes you individually for it to work? Is it five minutes? 10 minutes? 15 minutes? 20 minutes? How long do you think it takes to work? 30 minutes, does anybody else know anybody have a number they think how long an hour is kid takes Thank you an hour, it's different for everybody. First thing you need to do not be afraid. Second thing you need to do. Remember, it's about timing and amount. And once you know those things in your head, you're gonna go home and figure out how long it takes for your insulin to start working. I can't tell you how long it's gonna be. But get yourself in a position where you haven't had insulin for a few hours, you haven't had food for a few hours and your blood sugar's pretty stable, you know, under 200. And give yourself an amount of insulin you think will bring you down to 100. And then if you have a glucose monitor, wait for the arrow to turn down. And if you don't test yourself every 10 minutes or so and see when do I start dropping and that's probably pretty close to your Pre-Bolus time. Because what you want to accomplish everybody the tug of war, right? the option of tug of war is one side pulls the other side pulls somebody wins diabetes tug of war, you want no one to win, you want the flag to stay in the middle, never go to one side never go to the other. You can't accomplish that. If you put your insulin in and then eat, you give the carbs a head start. By the time they're moving, they have so much momentum, you can't overcome them. Even if that amount of insulin you chose was exactly right. It's still not going to work because the carbs have a head start. So what you need is for them to get in a battle. That just doesn't move. And here's how I think of it in my mind. I'm sorry about the mic. So the mic is here and it's the insulin I put the insulin and it starts working. It goes along the timeline. Then we put the carbs in the insulins already pulling down. Then the food tries to pull up. This is where they get caught in the battle. They're pulling and pulling and neither side can win. And at the end they both get tired and you're back where you started. The problem that you have if you're spiking is you put your insulin in too late, the food got a head start, you jumped way up. Now the foods being digested by your body, eventually the food leaves your system, or what's still left in your body when the food's gone, the insulin that you put in too late, and then you get incredibly low. If you put your insulin in too soon, you get low First, if you had the nerve to wait at a blood sugar of 65, eventually that food would catch and bring you back up again. I do my best for my daughter's blood sugar to be falling, when she starts to eat, you will all figure out what's best for you. I'm not telling you that what I do is exactly right. But I try for that battle between insulin and food to happen as low of a blood sugar as I think is safe. Because if you don't, you're just not going to win that fight. Okay, I can tell you this for sure. If your blood sugar is high, you have missed time to miscalculated your insulin and if your blood sugar is low, you have Miss timed or miscalculated your insulin. There are other reasons. But this is the this is the key. It's absolutely the key. And it's simple effects. I want to tell you about Rosa who's not here, Rosa put a post on online the other day, and that was her 22 year old daughters in XCOM graph it went from 60 to 400 like this, like a smile and a pumpkin. And I reached out to her and I said I think if you call me I can fix this at a half an hour of talking. So a stranger called my house her and her daughter on a conference call. We talked about the things you and I are going to talk about here today. And 23 hours later, she sent me a grant for her daughter hadn't been below 85 or over 120. And today she sent me another graph with her daughter ate a bagel and didn't go over 140 or below 100. So this is not rocket science. I know it feels like it is because you get the information in such little pieces you get a little bit when you're first diagnosed, and it feels like someone just hit you in the head with a shovel. It's hard to think. And then you think you remember some of it, and you go to the next part. And then someone tells you something else. And somebody online will tell you Oh, you need more Temp Basal. And have you tried an extended bowls. And none of this stuff makes sense. And the truth is, the further you get away from starting with this concept, the more those things are just going to end up confusing you and making things more difficult. The reason I bring that up is because a lot of people spend a lot of time wondering what's going on. My blood sugar is going up. I wonder what happened. I'll wait an hour. One more hour, three hours. Wow, it's not coming down. I should do something about it. Bring you that sugar down, your blood sugar goes up, bring it down, your blood sugar goes down, bring it up, do not wait around wondering because Sure. Maybe you're sick. Or maybe you are dehydrated. But it doesn't matter. What matters is your blood sugar's high, do something about it. Because you're going to have, you're going to have experiences. And it's crazy as it sounds, these experiences start building on each other. And eventually it just makes sense. The other day, my daughter's endocrinologist asked me what my daughter's insulin to carb ratio was. And I said I have no idea. I haven't looked at that in years. We don't even count carbs. I just look at the plate. And I think that's seven units. That's 10 units. It's 10. It's six, it's probably a 10 minute Bolus will do 70% of it now and the rest over an hour. I haven't thought about counting carbs in so long. And it's such a great thing to get away from cuz it's thanks to count carbs. It's no fun at all. There's no fun planning to eat. That's one of the worst things about diabetes is having to think about it and count your food and am I gonna eat all this? Am I hungry? It doesn't matter. I look at the plate. We put in the insulin if we're wrong, we we address it. That's it. Anybody in a fistfight? Anybody would have a good fist fight you.
So sorry, he's so little, I thought it would be an adult. Okay, here's the thing you want to hit first, you do not want to get punched in the face and then have to fight because you're dizzy. You don't know what happened. When you go first, when you act, that you know what happens next came from what you did. So it's sort of a mathematical formula that I've made up, it doesn't have numbers in it. I did this. This happened. I wanted this to happen. So next time, I will do a little more insulin, a little less insulin a little sooner, a little later. Because then you can't really say I bolused and I got low. There's cause and effect that you can actually trust. Woman the other day was telling me my daughter gets low whenever she works out. I said, Well, that's crazy. My daughter exercises like crazy shots. I get love from exercise. She does. She starts to work out and she gets slow. So we start talking about it. And what ends up happening is she has this theory about eating before she works out and when I looked at it, I just know you're She's mistiming her boss for the food, her blood sugar shooting up, she's working out, then the blood sugar is getting hit by the insulin, it's Miss time that she gets low. And in her mind, it was because of the workout. I want you to be able to say I did this, and this happened, because that's the only way to make an adjustment and move forward. It's incredibly important. Don't react act, okay? For pumpers. If you're bossing too often, your basal rates too low. That's it. Kids are gonna grow quickly. Okay. You're not gonna notice that happening because they're your kids. For instance, I lost some weight to come here today. But nobody in my house noticed. That's fine. So my daughter comes home from school in the beginning of the year last year and tells me that a math teacher sucks and can't teach. And she's an algebra. And at the end of the year, my daughter understands algebra just great. And I said, Well, there must have been some magical day during the year where your math teacher got good at it, right? And they taught us the magical thing that taught you that Audrey said no, I don't know what happened. I just know it now wasn't heard about that. I was like, Okay.
She's really something. And, and so I think that that really is the key about how we learn. Things happen slowly, you don't see them happening. kids grow and you don't see it happening. You gain 10 pounds, you don't see it happening. If your bolusing alive. Your base is too low. You need more insulin, what do we say before it's either not enough insulin, or it's Miss time. If your basis to our it's not enough insulin, and it's Miss time to cross the entire day. It's all about timing and amount. If you are injecting and you're using a slow acting insulin, how long did they tell you to start acting until last year body? Would you inject that once a day, last 24 hours? That's not true. Okay, so what you want to do is split in half. If you're having trouble at the end of your day, and your blood sugar's getting high and you and jack, your Basal instance, probably running out or becoming less effective. If you split the dose and do it every 12 hours. Again, I'm not a doctor, you'll find the balance. But if you do your slow acting insulin every 12 hours, you might have a little better luck. That's an MDI tip for me to you. Okay, all carbs are not created equal. Eating a slice of pizza is different than having a salad with some coupons in it. It is because heavier, more dense carbs sit in your system longer and they are broken down slower. When you eat pizza and your blood sugar gets high Three hours later, that was not the diabetes fairy. That's when your body started breaking down the pizza and it started going to your blood. So you might have to say, all right, well, I start eating pizza hits me a little bit, but I don't get high for two hours later, what do I do? What you do is you figure out how to time the insulin against the carbs. I can't tell you what that is. But I can tell you that if you try you'll figure it out. Some people use extended boluses I'm going to explain to you right now my daughter has Chinese food. I don't know how much she's gonna eat. It's general chicken, white rice, vegetables, is she gonna have three pieces of jello is chicken How much? I couldn't tell you. What I know is that most times, my daughter needs 12 units of insulin to eat Chinese food. That's what I know. So when I start, we Pre-Bolus I get her blood sugar running down. And I get that 12 units in I don't know how much she's going to eat. So I Pre-Bolus eight of those units, and I tell the other four units to go in over the next hour. That way, I've got a shot to bail on it if I want to right. Maybe she starts eating and she goes on to stinks. My daughter does the most disgusting thing when she's eating. She says she has a limit. She doesn't know it till there's food in the mouth. So she goes, nope, that was it. And then she takes a napkin. It's horrible, takes it out of her mouth and decrees that lunch is over. If that happens, and I gave her 12 units, and she's only eaten three quarters of what I imagined she was going to eat. I can't sell her extended Bolus. Well, I use a combination of a Temp Basal re I'll double her basal rate for a couple of hours. This is important. We do this thing with pumps. It's weird. Everyday at two o'clock, my basal rates 1.4. It's 5.6. That's so stupid. Why would your body need the same amount of insulin just because it's two o'clock, it doesn't make any sense. You have to stay fluid. If you're having more carb, heavy things, you might need more basal insulin, you might need a 30% increase for hours, it might be a 50% increase for hours, I don't know, figure it out. Don't wait around and say that's just diabetes, or I can't eat Chinese food. Don't do that.
This is very important. You have to trust yourself and the diabetes experiences you've had before you have to trust your gut. You have to have to have to you can't say but the doctor told me this. So I'm going to keep doing it. If I taught you how to drive, and I said that you only put 20 pounds per square inch on the brake. And you somehow could measure that and you're driving along coming towards a train you put your 20 pounds on in the car keeps going it keeps going and keeps going. You go oh the guy who taught me how to drive said this is going to be okay. And drive into the truth. You know, you press on the brake harder. The doctors have done their best to explain to you the basics and it's up to you to keep going to understand when you do that this gets incredibly easy. And I don't say that lightly. But I don't think of how. But today I do. But I don't think about diabetes for more than about 10 minutes a day. My daughter and I speak about it through text messages. Mostly, it does not encompass a bunch of my time. I don't stare at her glucose monitor. We are not crazy about it. All it is, but I just said she's a freshman, right. So I started figuring this stuff out when, maybe second grade. So the last time I bought it was to the school nurse was the last day of second grade, she has not been to the school nurse since then, we do everything through text messages. I watch her blood sugar, she watches her blood sugar. And we talk together usually for a couple seconds, hey, do a half a unit, do Temp Basal offer a half hour drink a half of a juice, that kind of stuff. Her range on her Dexcom is between 70 and 130. And we most of the time stay in that range. It's because highs cause lows. When your blood sugar's high, you use too much insulin, eventually it makes you low. If you never get high, you don't get low. So if I give her that insulin for the Chinese food, and she hits 130, and starts going like this, we bump it back down again, we stopped the arrows, that's what we call it, I'm like stop that arrow, it might be a unit, it might be a half a unit, it might be a Temp Basal, we stopped the hour and bring it back. And then for another driving analogy, because they're so exciting when you're driving, and you know, they're young people in here, you guys are going to get taught how to drive at some point, you're going to drift a little to one side and the person sitting next, you're gonna have a stroke. And you're going to overcompensate and end up 20 feet this way, it is gonna happen, it happens to everybody. But once you become a seasoned driver, you realize that when you see that line coming, your hands move almost an imperceivable amount to get you back to where you want to be. And when you do that, you don't overcorrect. And if you keep yourself in a situation with your blood sugar for small corrections do the job, then you don't see a bunch of over corrections, you don't end up high, you don't end up well most of the time. But if you end up high, do something about it, get it back down, you might have to crush that high with insulin and be prepared to catch it with a fast acting carb later, that might be what you have to do. But that's better than being high for four hours. So it's all just learning how to manipulate the insulin, you're going to have these experiences over and over again, at some point, if you want to be able to look at a plate and go, that's 15 units, you have to trust what you've learned in the past. You have to trust yourself. I talked to a lot of people privately and at the end of every conversation, but I end up telling those people, you have to trust your gut. Go with what you think I know, we're taught and listen to cops and doctors and teachers without question. And please, if it's a cop, put your hands up, especially nowadays, hands up. Okay, but but the rest of the guys, you can say why you can wonder a little bit. Again, take care of it first. Don't wonder why I saw Johnny sniffling this morning. That must be it. Who cares? blood sugar's high, get it down, maybe he's dehydrated, don't care, get it down. Doesn't matter to me think about it later later to learn these things right now get your blood sugar down.
And if you have glucose monitors, there's there's a study that's proven that the lower you raise your high threshold the lawyer wants to obey. And it really is what I just talked about, it's about reacting soon enough that it doesn't get out of hand. So if you have a glucose monitor, don't think of the beeping as annoying. Get it down, bring it down to 150. And try when it gets to 150 bring it back a little bit. It's incredibly important. Like if you don't have a glucose monitor, these things are still valuable. Don't think this is a sales pitch that you have to go get a glucose monitor, it makes it easier, I'm not gonna lie to you. But it's still doable. There are plenty of people who do it, you can do it without a pump. But you're going to inject more, here's what a pump brings you the injections don't have if you have a pump, you can manipulate your basal insulin, which is incredibly helpful. And you don't have to inject other than that MDI is the same thing. But being able to see 60 blood sugar, that kind of comes up and sits at 70 and 75. And you haven't had insulin for all that food for a while you really don't want to eat, you know, you can just shut your basal insulin off for a half hour and a lot of times that fixes it. That is a valuable tool for pumping. But it's not that none of this can't be done. With injections, it's just going to take more injections. If you're not bothered by injecting more frequently, don't worry about it. But you have to be ready to be able to say this meal takes 10 units. Oh gosh, my insulin is going up. I need two more. You got to be willing to inject again 20 minutes later, half an hour later, something like that. I know people tell you not to stack insulin. But if you have a glucose monitor, you're just addressing something went wrong. You're not you're not stacking insulin. Okay parents incredibly important.
exhaustion comes, you don't notice it happening. When it gets there, you don't know you're lost in it. It is detrimental to everything in your life. Please, if you're in a two parent household, make sure someone else understands, do not be afraid if you're the primary caregiver to look at the other one and say, hey, it's Friday, and I'm going to bed and good luck. Because if you don't do that, you're gonna go a little crazy. And you can argue about a lot of things that later you'll look back on, and they're pretty stupid. So please be very aware of that the exhaustion just overwhelms. Thanks. It's absolutely crazy. Okay, this is important, and it's not anti doctor. So don't throw me in jdrf present. But sometimes people say no, because they don't know. It's hard to say, I don't know, my children asked me things all the time that I tell them no to it is because I don't know the answer to their questions. My daughter was once in a pump class, like, I'm sure many of you have been, we're gonna pick a pump, and they're all laid out like Christmas gifts everywhere. And I said to my wife back in the corner of this room, literally on a dusty table, there was a box that looked like someone threw it there. This is a long time ago. And it wasn't I walked over and looked at it was an omni pod. And I said to the nurse, I'm like, why is this one not out with the rest of it? She said, You don't want that. And I was like, Are you sure? And she said, Hey, you don't want that your daughter's too lean. I was like, okay, the candle goes on the angle. She said, I forget, she gave me 17 reasons why I wanted one of those other pumps. But I found a pod look like the way to go. So I get it. Two years later, leaving an appointment, she pulled me aside and apologized. And she said, We told you not to get beyond the pod because we didn't have any experience with it. We didn't think we could support you. That's what she said. Now we're giving it to all the kids blah, blah, blah, and whatever. But they told me no, in that moment, because they didn't know how to support me. So if you walk in there and say I want to get a pump or I want to get a glucose mount and they say no, you have to have diabetes for a year before you do that. Say Why? I want to try a difference on Neto stick with that one. Why? Because I think what you're gonna find next is there's no answer. You should advocate for yourselves. You should do what you think is right. These are not magical people. You live with diabetes, you know what you want? It is incredibly important to advocate for yourself. Good. Sorry. Okay. This is a blown up view of a breakfast. So it's gonna look crazier than it is. But I want you to believe me when I tell you that this encompasses a bout five minutes of my overall thought over an hour. This is from a couple of years ago. So at this point, her high was still set at 160. Now you would it would be down here. And this low is actually at 80. Right now now we're at 70. Would it be a little lower. So my daughter is having a sleepover with a bunch of friends. She gets low in the middle of the night I get up and I just shut off her bazel and that's what it did. So I didn't give any juice. I didn't do anything else. I shut her base off for a little while her blood sugar came back up. Now the girls were sleeping in, as you can see here, because they were up late last night, but I knew because of her friend Shay who the night before said Can we hear french toast in the morning? And I was like Sure, sure that'll be great. And chocolate milk. Why don't we just put piles of sugar on it and one goes, like powdered sugar. I was like, Okay, yeah, that's what we had bananas, grapes, chocolate milk, powdered sugar, a French toast, everything. While my daughter was sleeping, I started bumping her blood sugar. I got it to come down. She woke up in here somewhere. I started cooking here, we put in the unit, we started to get a down arrow. Then the food came in. So we put in more insulin, got it to come down more. Now she starts adding powdered sugar, which I thought she wasn't going to do so we upped her basal rate.
It seems like it's a lot, but I'm gonna tell you me and then she says Can I have more french toast? And I was like, Yeah, let's go for it. So we put in more insulin. There it is at noon 97 with a finger stick, not just the CGM. All I did is balanced the insulin with the food. It's all dead. There's nothing else to it. I promise you. It's hard to kind of understand in a half an hour. But I'm proud of the podcast because this was a little stilted with Mark here because I've never done this live before. Although it was fun. But what'll happen is someone will come on like Ryan, and we'll talk and things will come out. Kaylee Oh yeah. She comes on and she talks and things come out. It's not planned. If I told you that I didn't even plan on what I was gonna say to you here today. Please take that as the truth. I think that these natural conversations are important. I think that during every hour podcast, we come up with a couple of things that you'll come away with and think wow, that really relates to me. Much like the algebraic it takes time to get. You're not gonna leave here today like Superman and make all these fixes. But if you leave here today, knowing that it's about the timing and the amount, and that you have to Pre-Bolus a meal or it's not going to go your way and then think about the rest of this. I promise you, this stuff happens. It is incredibly simple. blown up. Here, it looks like an hour's worth of thinking. But I guarantee you that what happened was I was cooking. And I said, Okay, Pre-Bolus this and do a Temp Basal. Here comes the food put on the other four units. Nowadays, she's bigger I would that would probably be a Pre-Bolus of five units and five more units later. And I was stretching it out to try to cover the bread. And I was stretching it out because the chocolate was like chocolate milk. She never drink chocolate. But there's another little girl talking about chocolate milk. And so but when my daughter looked at me, I was like, yeah, drink the chocolate milk. Here we go. I never ever, ever counted a carb. They're never going to ask if you guys have any questions, I'm happy to answer. And if not, I'll keep going. But just real quickly. The podcast is 100% free. It's available for iPhone or Android iPhone has a native app called podcasts that you can just use Android Spotify, you have to find an Android app. It's also Juicebox Podcast comm if you listen, that'd be great if you don't sweat, but I appreciate you letting me speak. Does anyone have any questions at all? I'm happy to answer anything that anybody might be able to tie.
You would have to ready? Yeah, that's not gonna work. But you have to figure it out for yourself. So only I know I said a lot. And I'm from the east coast. So I was talking really quick. But I said in the beginning, you're gonna have to go home and figure out what that is get a blood sugar stable somewhere where there's no insulin, no food, put in a big bolus and see how long it takes to move. And then from there, it's, I try it's the m&m story, then I put it in here. It didn't work tomorrow, I'll try it a little sooner. Tomorrow, I'll try a little later tomorrow, try a little more a little less. Yet there is one thing you can do to make it easier on yourself, which is make similar meals over a weekend. Similar breakfast, lunch and dinner, take out the variable so there's less to think about. And then just keep keep swinging at it. Try it one lunch, and then the next day go Okay, got a little higher than I thought try it again. The next day, the next lunch. Somebody else? Hi.
So I handle my daughter and I handle her diabetes. And my wife by my wife's done a great job today while I'm at home, we do it the way the same way I think about parenting, which is I have never, I don't think there's a light switch fixed to diabetes stuff. I don't think there's something you say or do or read that just makes it all makes sense. And I don't expect my kids to figure life out in one day. So she and I do it together. We talk out loud about it while we're doing it most days. Plus, most of it's done through text messages. So she gets to see it happen. And what I see is that slowly over time, you know, I'll I'll say hey, how much do you think that is? And she'll guess about what I was thinking. So my goal is just for her to learn it at her own pace. There's a podcast early on in the show called texting diabetes, texting is the absolute most important tool in type one. Besides the pumps in the CGM, as far as I'm concerned, because it limits the amount of time you're talking. I'll tell you right now that when she was much younger, back in second grade, I was downstairs very loosely on my sofa, and her cgmp. And she needed a half unit of insulin. And I didn't want to get up and she was upstairs for some friends playing. So I texted her bolus, a half a unit and she said okay, I was like, Oh my god, that was easy. And then I started I started worrying, like, What if she didn't do it? Right, I found a reason to look. And I was like, Oh, she doesn't have the internet. It's great. Then it hit me about 20 minutes later, the only difference between me being in the room with her and not being in the room with her it was my fear. If I let that fear go, it didn't matter where she was in the world. She could be across the street, the house or at school, and it hit me like a ton of bricks, I can never go to the nurse again. And that's what we did. You have to wait till they're at enough of an age where they you can be confident that they're gonna do what you ask. But it's it's that I think it's just time. I think that if anybody thinks that there's a light switch health issue, I think that is a very kind of American feeling like I want to take a pill and make it go away. And I don't want to think about it again. You are going to have to put some effort into diabetes. That's for sure. Anyone else? I'm sorry. So I'll get you next. Hi. Not at all.
Unknown Speaker 49:20
No, I don't know.
Scott Benner 49:24
I look at the food. I think it looks like five minutes. It's experience. It happens for everybody. If anybody who's had diabetes for a long time. Do you count carbs? Now? You're talking about a little kid. Okay. What's your name, sweetheart? Because Hannah eat one slice of pizza on one Saturday and the next Saturday eat the whole pizza. No. So you know about what she's going to eat right? So give her the insulin. If she goes up and you say you give her five units of insulin. It goes up and you give her two more she's little it's probably not five but say that happens then that next time You eat that food. Seven, start with seven, because last time it took five. And to start with seven, you are mostly not using enough insulin if your blood sugar is high. And I want to say this, and I'm sorry, if I missed out on saying earlier, you have to have to have to have to understand that you need to stop erring on the side of caution. You would much rather much rather have a couple of lows a month than 28 highs. So you have to kind of come out and really try. So if it's You have to trust that what you know is going to happen is going to happen. You can't say Oh, last time my blood sugar went up when I did this, but maybe it won't this time. Everyone has done that, right? Like I should put mine somewhere. No, maybe I won't need it. You always need it. Always. You always need it, you are very frequently not using enough insulin. And you don't do that because you're scared of Lowe's. And I get that. But after that we'll take seven units over and over again. Stop starting with five, like stop, just trust yourself. It's a huge leap. I swear just so experience and repetition with meals plus kids eat about the same amount every time they eat. So in the end, you start looking it's about the same over and over again. So I'm sorry. Wow, that's amazing. You had the same question. Does anyone else have the same question? Did you really? You just screwed me Okay, that's fine. Hi, good.
Yeah, exactly the same way. That said, I don't do anything differently. I just stay fluid. She needs carbs. She gets carbs, she needs insulin, she gets insulin. The thing you don't talk about a lot with activity is is that adrenaline can drive up your blood sugar. So I'll tell you a story that people seem to really find useful. My daughter was about eight years old. She was in some recreational Basketball League that happened on Sunday. So it was one of them where you came in, and you were like in sweat pants and looked a rack and everybody else did too. We all ignored What a mess we were, you know, and I bear into this blood sugar of 100. She'd go out and play basketball and a bunch of it would go to 250 happened every Sunday. So one day I just thought I can't keep letting this happen. How do I Bolus for adrenaline right? And I realized one day I'm like, I'm gonna stop thinking about the juice box like medicine and I'll start thinking about it like food, like, what would I do? If I wanted her to drink that without our blood sugar going up, I figured out how much insulin that would take. So one day, I got into the chair blood sugar's 100. And I bought a unit a half of insulin, etc. to play basketball. And the adrenaline hitter and that fight happened and nothing moved. And had it not happen. Because here's the interesting thing about adrenaline when they play teams that weren't any good. And she didn't think she could lose her adrenaline never went up. It was only when she felt like competitive that went up. So I thought if this is a bad team, I'll have a drink the juice, right. And that day, they weren't a bad team. And I didn't do it. But that one thing I've shared with people over and over again, I get so much correspondence back. When you're looking for a way to be bold the first time, try thinking about it that you're just Pre-Bolus in the juice box. And then I bet you'll find out you don't need the juice box. And that's how you're going to learn you're not using enough insulin before we go. Because I promised I would do this and I see Melissa standing here. It's his birthday. And I thought it would be great to embarrass her and say happy birthday to her.
So just not the whole song but 123 Happy birthday. Would you mind 123 Happy birthday. Sorry. So was I
Unknown Speaker 53:53
thank you, Scott. Thank you again to Scott a couple of announcements before we head out.
Scott Benner 54:04
Thank you so much for listening. We'll be back next week with another show. If you're interested in having me out to your event or creating an event of your own where we just get together and talk about being bold with insulin and other management ideas contact me through Juicebox podcast.com
Please support the sponsors
The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!