Scott Benner 7/6/23 Scott Benner 7/6/23

#948 Rebellion is Hard Potatoes

Erika is a licensed marriage and family therapist who herself has had Type 1 diabetes for over 30 years and who specializes in working with people with diabetes and their families and caregivers—from those newly diagnosed to those experiencing it for decades. She and Scott discuss Rebellion.

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Scott Benner 0:00
Hello friends, welcome to episode 948 of the Juicebox Podcast

Erica Forsythe is here today, now we're going to talk about rebellion. And we're not talking about Luke Skywalker and his friends, we're talking about that very human reaction that we all have from time to time. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. Or becoming bold with insulin. You can visit Eric at Eric forsyth.com. Eric is sees patients virtually from Oregon, Utah, Florida and California and she sees patients in person in California. Are you looking to save 35% off of your companies, your towels your sheets, your joggers, cozy earth.com use the offer code juice box at checkout. Want to start every morning with a delicious sip of ag one you can it's what I do, you can do it to drink a G one.com. Get our free one year supply of vitamin D and five free travel packs with your first order at mydlink. If you want to hear more episodes with Erica go to juicebox podcast.com. up to the top, click on mental wellness, you'll see a whole list this episode of The Juicebox Podcast is sponsored by us med go to us med.com forward slash juice box or call 888-721-1514 To get your free benefits check today. Get your diabetes supplies the same way that Arden does from us med us med.com forward slash juice box or call 888-721-1514 The podcast is also sponsored today, by the Omni pod five Omni pod.com forward slash juice box, you're looking for the Omni pod Vive, that's where you're gonna find it, you want the Omni pod dash, it's there to Omni pod.com forward slash juice box. You can use the same insulin pump as Arden, the Omni pod, there are links to us med Omni pod and all the sponsors in the show notes of the audio app you're listening in right now. And at juicebox podcast.com. Or you can just type them into a browser when you use my links. You're supporting the show. And okay, so All right, we are recording. Erica, we are back together again. Hello, hi to go through my list of things that I call Erica. In my notes in my notes app, I know people are gonna be like, Oh my god, Scott, those write some things down. I have like a long list of things that I want to talk to you about. So every time I see you come up on the calendar, you send me a text and you're like, What are we gonna talk about? And then I go look at the list. And I read through and I wait something, wait for somebody to grab me. So what grabbed me this time was rebellion as a human decision. So that is a thing that one day I just opened up my notes app, look for the word Erica and wrote it down. Because I think I'm just I don't know, I'm baffled by it on some level. My first conscious thought about it was as a young person, I was watching Jerry Springer. And there was like this 15 year old girl going through this thing. And it's a thing that happens to people all the time. And I thought like, at what point do you not see the last episode and go, Oh, I'll avoid this. Right? Like, why can't we avoid things that we know? Or are obviously bad for us? And then that thought trance kind of transferred in my head into? Why? You know, I mean, like when you're a young person, it is clear to you no one cares about you as much as your parents, even people with crappy parents, like these are the people right? And yet, there's a rebellion for that. And there's a rebellion at work and people don't like to be told what to do. And I'm, I'm one of those people to some degree, like if you tell me what to do, I'm like, Yeah, I'll probably be doing something different than that. Way. There's no reason for that. You see it in diabetes. Some people are easily they go to their doctor, their doctor tells them something and they fall in lockstep. You know, I mean, like she almost to the to their detriment. And there are other people who as soon as it said to them, they're like, Well, I'm not being told what to do. So is it I mean, it happens in in society as well, right? Like and I'm not even saying that I want everybody to do the same thing or I wish everybody acted right like I don't I don't Don't feel like that. I'm just interested about the human psychology of rebellion. And I was wondering what you had to say about it?

Erika Forsyth, MFT, LMFT 5:07
I think there are yes, as you said, all sorts of reasons why, and maybe some of them are conscious, some of them are unconscious why a person chooses to rebel. And I think it depends on the, you know, the age and stage that we're talking about, I think they're just to list maybe a few of the reasons. You don't really care how your decision affects others. And that might look like rebellion to the on the outside, right. But your, your instinct is, I'm going to do it this way or my way. And you don't really care if what that looks like or you don't want to conform to society's expectations. I think that might be perceived from the outside as someone being selfish or immature. And then the person who's making that choice might feel like well, I'm just not going to conform to these traditional ways. I think rebellion could also maybe look like depression, sometimes, like there might be a fear of doing something that your parents or your professionals might be advising you to do. And for whatever reason, whether it is depression or another, you know, mental health challenge, I think there's often fear involved or taking risk. And that also might look like you're rebelling, when you just actually can't feel or you feel like you can't do what you're being asked to do. It's yeah,

Scott Benner 6:44
it's just so interesting that, that it seems to be like step one, for most people in every, like, you're presented with something and right away, it's no, like, No, I'm not doing that. You can't make me do that. Like but but there and I get that if you've been if you've been through a situation where somebody is controlled you or something, I would obviously see that but like, with a young person, like like, an eight year old, who's just their whole life, and like what you say one, you say blue, I say red, that's it like right, like, and, and I get the idea, like online, it talks about this here says this theory, what is the urge to rebel describes the unpleasant feeling that emerges when people experience a threat to their free behavior. Like so is that like innate? Like that?

Erika Forsyth, MFT, LMFT 7:40
Some Yeah, some people feel like it is an innate experience. And some people might describe it more as curiosity, right? Like you're as a child, you, when you're kind of that early, elementary years, or even in preschool years, you know, they why why not? Why do I have to do this? And that can feel like just just, you know, wash your hands after you use the bathroom? Why?

Scott Benner 8:07
Learning? Do you think when they're younger?

Erika Forsyth, MFT, LMFT 8:10
I think it's learning and there's this curiosity of wanting to understand. Is it A, do they internalize it as a threat to their freedom? I'm not sure they're there yet. As a as a young child. Yeah, I'd say partially learning and just curious, wanting to understand why do I have to do these things that are expected of me?

Scott Benner 8:34
Yeah. And I guess also, like, setting, like, you're testing boundaries, too. But what's the value of testing a boundary? Do you see what I mean by that? Like, like, I mean, I, looking back may have pushed my parents. So like, so you want to see like, how far until this breaks? But why? Why do I care? And people do that in personal relationships, too. I guess he has, like a personal treat of a spouse or, you know, somebody they're dating, almost, like, poorly, to see like, Do you really love me? Like, how much of this will you take? And that I even understand maybe better than, like, with a little kid like, I guess a little kids where it throws me off? Like, where does that come from before you've even seen the world? You know,

Erika Forsyth, MFT, LMFT 9:25
I think the you're exposed to new things and the way our brain is, I think just the way a brain develops is maybe some kids. I mean, somebody might say it's birth order to firstborns often may just do what they're told. Because of either attachment or because they want to, you know, make their parents proud. They want to abide by all the rules you might see children who are middle or later born. and maybe more resistant and want to, you know, quote, be more independent. But actually, it's not necessarily true independence quite yet. But that's what we often say when our children are like strong willed and doing what they want. And they say, Oh, you're really independent. But it actually really, that isn't true independence quite yet.

Scott Benner 10:18
Do you believe in that the birth order thing?

Erika Forsyth, MFT, LMFT 10:21
I think I mean, I think it can play out quite frequently to be true with those stereotypes. I don't think it's I don't think it's a set in stone. prognosis of how you act in life, but I think it does. It does play out pretty frequently that way. Okay.

Scott Benner 10:40
I always thought of that as the level of energy the parent has as more and more like, you're like, you have one kid here, like up there s. Oh, my God, like, Don't fall, don't touch this don't get dirty. Like, you know, by the time you have a second kid and they drop a pacifier in the floor, you're licking it off to give it back to them, right? Like the first time it goes through the first kid, you drop it on the floor, and you're like, Well, we have to soak that in bleach and then hit it. Yeah, boil it? Yeah, well, it was some radium and then we'll boil it, bury it in the ground for 1000 years and bring it back up and see if the kid can use it. And literally, by the second kid, you're just saying, Hey, guy, yeah. So I'll get the dirt off in my mouth, and then just give it to you with my spit on it. And then by the time you get to the third or the fourth kid, you're just like, I don't care. Like like, just, just, I mean, try not to die. But I mean, even if you do I got five kids. You know? And I always thought of it that way. And then I thought of the response back from the kid. Because you'll hear I mean, you must hear in therapy all the time, right? Like, people's experiences with their parents have to change to buy where they are in the pecking order. I would think of age. And then they're, I mean, this is a little off topic a little but be honest, like people have favorite kids, right? Do you know I don't obviously, ah, but But it must happen. Right?

Erika Forsyth, MFT, LMFT 12:07
I think sometimes I hear families describe children as maybe, you know, easier, or this one is our strong willed one, or this one is our more patient one. And so I don't necessarily hear parents say this is my favorite. But sometimes adjectives that are used to describe might reflect their experience of their child, which may or may be true.

Scott Benner 12:32
If I turn my head to this whiteboard that I use to keep the podcast semi coordinated. I will read the words. Arden is my favorite child written by Arden three days after she got home from college. And I've had both my kids stand in front of me go seriously one of us you like one of us better, right? And I'm like, No, but they want to know, they really want that answer. And I've seen in my wife's family, it's a running joke. Because, well, for reasons maybe some my wife's grandmother was not a healthy person in a number of different ways. And she would pull the kids aside when they were doing favorable things and get very close to them and tell them you're my favorite. But then you'd fall out of favor, and she'd go to the next one and tell them you're my favorite. And they actually, like they joke about it. But I don't think they're joking. I think they wonder which one of them's the best. Like she set up a race between them. Almost on purpose, like see who can be grandma's favorite. I don't know what that's got to do with testing boundaries or being rebellious. But we got to that.

Erika Forsyth, MFT, LMFT 13:40
But did it did it work? Did it? You know, get positive results out of their behaviors? I don't know.

Scott Benner 13:46
I don't Yeah, I don't either. She was she was a drunk. I don't think she was keeping notes. Okay, but So, okay, like digging back into this again, I'm at work, my boss tells me to do something. And that first visceral feeling inside of me is you can't tell me what to do. What the hell is that from?

Erika Forsyth, MFT, LMFT 14:11
Gosh, I I would want to explore, you know, childhood, parent, parent child dynamics, I would want to understand, you know, how did you? What is your sense of autonomy and agency? Is it a control? Do you feel like you don't want to be controlled, and by and not feel that it's triggering something that made maybe you were a victim of, you know, really harsh things as a child. And so that could be triggering as an adult to when someone says you're going to do this, whether you like it or not. And so maybe you're wanting to fight back, internally. And so you're saying to yourself, I'm not going to do that you can't tell me what to do. I'm going to do it this way. And so you're you're If he feels easier in the moment, to have that narrative play out and choose what you want to do, but knowing that there might be some other consequences, but I would imagine that that it's, it's a result of some kind of learned behavior as a way to cope as maybe, whatever happened as a child, that could be painful.

Scott Benner 15:23
I mean, it's just it is really, it's fascinating. It's and there are some people who are like pleasers, right? You can't ask them enough, they'd be happy to do it to throw themselves off a bridge if you told them. And, you know, like, and that's got to be the same. The same sort of thing in reverse, right? Because, you know, you just said, you just use the phrase, you're gonna do it, whether you want to or not, I have to tell you, I know, that's been said to me before, as as a child, like I know, and I thought, what a terrible thing to say to a kid. And then I thought, but I mean, I am a reasonable adult, I work hard. I take care of myself, I'm reasonably mentally stable. Like, do you don't mean like, it didn't work? Right. And I was like, a rebellious person. As a young child, I always assumed I was being rebellious. I guess, you know, like, I'm adopted. And I never felt, I don't know the best way to say this. I think like, just keeping it kind of clinical is the best way. I think my IQ is about 40 points higher than the people who, who adopted me. So nothing that they thought of is, like an answer to a question never made sense to me. And then I would say, Well, what about this? Or can we try that? And then that didn't make sense to them. And now we're stuck because I feel like I'm doing the right thing. And they feel like they're doing the right thing, but they're paying the bills. So it's, you're gonna do this, whether you want to or not. And, you know, I mean, to some short degree, I told you that story about my dad kind of like, kicking me to the ground one time, I think that was that, like, he was just, I think he was outmatched, and he didn't, he couldn't get me to stop saying what I was saying. So he was going to try to stop me that way. And all that did was make me more resilient and defiant. Where as some people would have, like, just gone the opposite direction with that, and I would understand both like just, you know, capitulating, I would have understood that too.

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Erika Forsyth, MFT, LMFT 21:27
What is the motivation? What's the underlying emotion? That and thinking that's driving that behavior? Could it be I mean thinking about just the diabetes and you know, either preteens teens, or any any age really not wanting to follow you know, the instructions of your doctor or your parents to manage your diabetes. And then people will say, Oh, my child's rebelling and doesn't want to manage their their diabetes the way they need to. So often. Is that is that because of their age and stage and they're being teenagers and rebelling? Or is it more anger. And that's the way they feel like they can control a situation where they feel like they're out of control. And so they don't want to have to do to Pre-Bolus because they're angry at the diabetes, but then it looks like rebellion. But underneath that is sadness, anger, frustration, feeling out of control. Yeah. So understanding I think, at face value, we look at behavior and say, Oh, that kids or that adults, just being rebellious and being kind of a jerk, or being really selfish and immature. But really, there's always, typically something underneath that that's driving the behavior.

Scott Benner 22:43
So the path is, you know, a kid's first word is probably going to be no, right? Tell a kid not take off a seatbelt, take it off. It's my expectation is it's the way you handled as an adult, you have that child, that probably dictates how they experience those rebellious moments, at all stages of their life up into their adulthood, like so you have an opportunity to meet that with loving acceptance, you know what I mean? Like and saying, Hey, I realized you don't want to put that on. But we were because it's makes you safe in the car, we're, you know, or something like that. Or we exercise because of this, or we eat this way because of that. And so you can't, it's feels to me, like what you're telling me is that when it's when it's happening, you don't quell the rebellion. Like that's not the positive way out of this. It's just going to create stronger and stronger and stronger rebellions as you get older. Does that make sense?

Erika Forsyth, MFT, LMFT 23:48
But yes, potentially. But I know that there are moments when you just you need to get from point A to point B. So using a seatbelt example, I just put the seatbelt on, right? Like you just Yeah, you don't always have time to say, Well, I understand you might be feeling frustrated, and you want to make your own choices as a young person. You know, it's interesting. Realistically, it's hard to check in with the emotion. But you can you can always do that later, too. I think there's we, you know, as parents, myself included, we often forget that we can do repair work at any time. So we can say, Okay, you're putting a seatbelt on right now, because it's the law and I'm telling you to and we're going to this thing, and then later have a conversation no matter what age to say, Tell me about that. Like that time when you didn't want to put your seatbelt on like helped me, you know, what, what, how can we help this process next time?

Scott Benner 24:37
Okay, if I'm gonna say this to you, but go deeper on that helped me more. So I'm 17 years old, and I'm doing something that just seems shady. But the truth is, is that I'm just probably rebelling and trying to find some control of my life that I don't have and that you think is homicide reversal. But around diabetes, I don't like that word. You think you can work out of that?

Erika Forsyth, MFT, LMFT 25:01
i Yes, I would hope so be it will take it also matters. What is your current relationship like with your child? I mean, I think if you were, it was a highly conflictual, combative, non compassionate, non empathetic relationship, it'd be hard to start right in at that moment. But that can be built over time, even if you are starting as you're noticing your team become more rebellious and make choices that you feel like are risky and unsafe, which is also, again, part of their adolescence and what they're going to do naturally. So I think it's finding, in that moment, understanding and validating, I understand this is you wanting to, you know, explore and take risks and see what you're comfortable with? How can we find a middle ground? If it's the, the diabetes example? I think, going into the emotion when they are not wanting to change their do a site change, or use Pre-Bolus? Because that's a frequent topic. What So tell me, what is that about? Like, what is it? Is it fear? Is it sadness? Is it embarrassment, oftentimes, it's just, you know, the teen wanting to be like their, their peers, they don't want to have to pause, they don't want to have to think about it. So gosh, that must be really frustrating in those moments when you just want to keep going and keep going with your friends and keep eating and keep doing the next thing you don't want to do that your life to be interfered with in that moment. And so it looks like you're you're wanting to rebel, but no, you're you don't want to rebel. You want to take care of yourself. Yeah,

Scott Benner 26:45
I want to I'm gonna turn this all right on to diabetes in a minute. But I know I've said this, I think in the past to you, but when we were teenagers, we dated the Catholic school girls, because they were more fun. But they were more fun because they were being repressed more like that. Yes, we have talked about Yeah, right. Like, you know, you say the same thing to a girl in public school who had a lot of autonomy over her life, and she'd be like, Get away from me. And like you don't know, like, alright, okay. But then you go find somebody who's being restrained somehow. And they have a desire to just do whatever the opposite of that is. And, you know, what else did you see? Oh, but I noticed girls with long hair cut their hair short, when they graduated from high school, girls to short hair, or their hair long, people were smoking who you knew didn't like smoking. Like they weren't interested in it. They didn't like it, but there they were, they were like, I'm gonna smoke cigarettes. I'm gonna date boys. I'm not supposed to. I'm gonna like, seriously, like, always the worst boys, like, like, we joke about it growing up. And you guys will say to each other, like, just be meaner, and they'll want to go out with you. Like, and I know that's not real. But it feels real. Because they're because their parents are probably like, look, meet a nice guy or meet a nice girl. And they're like, Well, I'm gonna go do the opposite. I have like, purposefully counter programmed things I've said to my kids over the years, like, I'm like, if I say that, it's definitely gonna go the other way. So, you know, but but then it leads me into this thought this thing I think about all the time, when we were taking coal to college for the first time, we were in some like parental seminar. And somebody raises their hand and just says, like, I don't want my kid to have access to alcohol. And the woman at the front of the room was like, what? It's so and she's like, we are adults. We can't stop that. Which obviously was like the legal answer for the school about how they stay out of it's like, Hey, kids are 18 if they want to break the law, they can it's not up to you, we don't have to tell you, they're doing it etc. And then the conversation moved on, and she's like, but don't worry. She's like our research says it's only like 5050 And like, like half of the kids will never drink while they're here. And half of them will and because I'm not a drinker, I thought oh, okay, well my kids probably won't drink then. And that kind of worked out like hold doesn't enjoy drinking. I don't think that he didn't try but he was like I'm right. I don't like this. But he also didn't have a ton to rebel against. And so but summit, but the kids that I'm thinking of who looked like they were really had the screws turned on him by their parents, like you could kind of tell they were the ones that went the wild as to college. And so but what are you doing that for to prove it to yourself to prove it to someone else? Is it because the feeling is just that free feeling feels good? You don't I mean, I don't know that I think yes, this is what I wonder.

Erika Forsyth, MFT, LMFT 29:52
I think it's so those may be the those types of people that you were just talking about there. I think they're trying to show like okay, I going into college and now it's my turn and my time to be independent, I can make all these decisions that my parents have said no to, and they've, you know, all I'm gonna go live my life. And really, they think that they're being independent. But they're, they're actually still dependent on there. They're trying to make their self deficient, their definition, their personal conduct, their value on doing the opposite of what other people want. So they're still, they're still dependent

Scott Benner 30:35
on they're just being controlled by a different God at that point. Right? Yeah. Yeah. So instead of your mommy telling you what to do. Now, drinking culture is telling you what to do. Or I'm dating a guy I don't even like because my mom doesn't like him or girl, Billy, etc. Like like that? That really does. Okay, that makes sense to me. So you're never alright. Are you telling me we're never really free? But there's ways to feel free?

Erika Forsyth, MFT, LMFT 31:03
Oh, my gosh, by no, no, I think I think the, the, I think the mentality of someone going to college and saying, I'm gonna make all these choices that I wasn't allowed to make, or I was told I couldn't. And I would have all these consequences. If I did. Now I have the freedom to go do what I want to do. You're you're still relying or depending on doing the opposite of what other people want, which still is controlling you. But that's just like the next stage. So maybe the people who are going to college who aren't making those choices, as rebellion, but they're free, like let's say, you know, coal, like you were sharing you he didn't enter into college with this negative or kind of controlled parenting lifestyle that you had, right? So he felt like I can, I'll try it. But it's not I don't really care. Either way. I'll just see if I like it or not. Yeah, it wasn't because Dad told me not to, or he told me, whatever, go go for it. You probably modeled a very neutral position.

Scott Benner 32:15
If I told you the things I told my kid before I went to college, I said, I said, Listen, there's only a couple of things in this life you can't do. And he's like, okay, and I was like, they're like the, I said, they're the unfuckable things. And he goes, Why don't like the things that once you lock them up, you can. He was like, alright, and I said, don't kill somebody. Don't do it with a car, don't do it with your hands. He can't get out of that. As like, don't get a lady pregnant. You can't get out of that. And I was like, that's pretty much it. As in everything else, was talking and an attorney, I'm sure we could turn around. I was like, I was like those two things, like and I said, Look, forget those two things. You don't do something you can't, you can't apologize for or reverse or fix or anything like that. I'm like things that are are just, and I said it again, I'm like, they're unpredictable. And I didn't mean that as like, obviously, that seems like a bad pun, but I wasn't saying it to him like that at the time. Like I really was just like, there are just some things you can't you can't go back in time for. And I was like, those are the things you want to avoid. And I said, you know, be careful driving your car. And you know, don't. That's the kind of stuff man like there's I said, somebody at that school is going to like you guys are all going to come in and a couple of his kids aren't going to leave. Like they're, they're going to die there was like one or two statistically aren't making it out. And it's going to be some stupid story about them falling off a balcony or getting hit by a car crossing the street. I'm like, that's the thing. You don't want to get hit by the car. You don't want to be the car hitting them. I was like those things I said, because you'll never even if it's an accident, you're never going to forget that you took someone's life. Like I was like, that's the thing. You can't, you can't get back from like, you just can't get back or it's the same thing of like, I hate to say but like if you have a child die. I mean, go to therapy, do whatever you're going to do. I don't know how you're getting out of that. You know what I mean? Like ketamine, maybe? Or mushrooms. I don't know what you're doing. But I don't know how you're gonna forget that. You know what I mean? So like, just, you need to avoid those things that are going to do that. And he, you know, he took me seriously and, and he left I told my daughter the same thing. I was like, I'm like, You have a couple lectures. I'm like, You're a girl. I was like, you know, I hate to say it like that. It was like but you gotta be careful. You know, and inside of six months, she's like that I was walking down the street and like three homeless guys were really aggressively yelling at me. And I was like, okay, and I thought, Oh, wow, I never thought about that once when Cole went to school, because Coca Cola could have turned around and like, took care of him. So you know what I mean? And or, I don't know, even if he could know me, like, I have that feeling in my head of like, maybe you could fight his way out of a problem. You know, I'm not saying Arden wouldn't fight actually Arden told me later, she's like, I think me and my one roommate, she goes, I think we could take down one guy together. Just like we appear to have that kind of anger. And I was like, alright, but just that that whole feeling of, I don't know, but like, Did I run the risk of my son going like, Well, I'm gonna do the exact opposite of what that guy just said. I did, but I thought I had him set up well enough that that wouldn't be the response. But you know, if I was a bad parent for 18 years, and on his way out the door, I went, don't get anyone pregnant, he probably would have you mean, like, he probably would have been not careful with his dating choices. So how does all of this I think it's obvious that I brought this up, because I've interviewed about 1000 people. And I'm either talking to a parent whose child is rebelling, or a parent who is worried that they're going to do something that causes a rebellion, or I've talked to a teenager who says, you know, you know, some kids go off to college and drink their face off, I went off to college and stopped giving myself insulin. Like that was their collegiate rebellion, right. And then they either are lucky enough to see the error of their ways and go back, or some of them end up on here, 40 years old, talking about, I can't see out of my left eye and like, blah, blah, blah. And so it's a big concern around diabetes, because I think the picture I tried, and you helped me pain is that this is going to happen no matter what, it's a human condition. Yes. And how do we keep it from impacting, like our long term health? Like that, to me is the real question once your kid has diabetes, or even once you do, like, I mean, honestly, if I, if I just develop diabetes today, I've told you enough stories, like I might rebel against that, like, I don't think I would right now. But who knows where I would point that at? I'm probably still mad about all that stuff. So I mean, the other day in traffic, someone did try to hit me. And my daughter was like, hey, hold all that Fillion? Could you like, okay, she's like, we don't, you don't live there anymore. And I was like, this guy I know he's messing with. And then she's like, she's 50. And I was like, Yeah, I'm like, but not to get too far down. And I said to her, I'm like, you, you can't mess with people. You don't know what they've been through. Like, like, like, I always tell my kids, I'm like, You can't mess with somebody who's willing to go farther than you. Because once you're in it, like Erica, once it's happening, and you're standing on the side of the road, one of us gonna kill the other one. And like, and one of us willing to do it, and you don't know who they are. And they never look like that person in the moment. And I have to tell you, that somewhere deep down inside of me, I might be that guy. Like, we get out and we start going, I might not know when to stop at some point. And I don't look like that person. And so that's how I teach my kids. I'm like, you don't know who it's going to be who you're going to unleash something from, you know what I mean? So anyway, again, not about rebellion, but probably at the same time. Yes, about rebellion. Okay, so. So from your perspective, if a parent came to you and said, My concern here is that when this rebellious nature comes, they're going to turn it on their diabetes, what would you say to them?

Erika Forsyth, MFT, LMFT 38:37
Yeah, or unless it's, if it already has started,

Scott Benner 38:40
right, either,

Erika Forsyth, MFT, LMFT 38:41
I think yeah, I think if I'm speaking with the parent, again, I would go back to the What is your relationship like with your child, what are your How are you building trust? How are you building communicate connection, what is your communication style like understanding is it kind of mean you are the parents so it is going to be top down in terms of you know, boundary setting rules discipline, but in the parent child diabetes relationship, it has to be special and it has to be safe and sacred. And I think the rebel you know, the the fear of parent have a fear of your child rebelling, using diabetes. It's, it's always, most likely something that's under and what how do you feel I'd want I'd say okay, parent, check in with your child, ask them How are you feeling about diabetes? What is it? What How was your day like today with diabetes? What are your if you could write a letter, or if you could talk to diabetes, what would it be and oftentimes, the teens are going And to be angry at their parents about why are you telling me to Pre-Bolus? Really, you're angry, they're angry at the, like the fact that they even have to Sure Pre-Bolus. And I know it's obvious, but I think in the moment after day after day after day of trying to manage it, we forget, we forget that the chronic illness is going to always be connected to some sort of emotion, whether it's kind of flippant, like, Ah, it's fine. It's kind of on the backburner. We're doing fine to a site change day and your your child is dreading it all day long. And maybe they've had a bad day in their ears, they're irritable, they've gotten to a fight with their teacher or their friends, because really, in the back of their mind, like I have to change my pump. Today, I have changed my CGM. And we think as parents or caregivers, that's like such a small thing. It takes five minutes. Yeah. But it can be sitting there in the back of their mind for the until maybe you change it. And three days later, they're already anticipating the next thing. So these smaller things that obviously can add up. So sorry, going to back to what can you tell the parent who's concerned about the rebellion that is either creeping up or already happening would be to, you know, set the diabetes aside as much as you can connect emotionally with your child. And if you don't know how to do that, you know, get get help, and how to do that. And check in with them there. And if they are resistant to talking, that's, that's okay, too. And, you know, giving them the time and space sorry,

Scott Benner 41:38
no, no, the time and space thing is I keep I don't want to lose my thought, which is, I imagine people listening would find it odd to hear me say, but there are moments where if Arden's having like a higher blood sugar, I look at the whole day, and the whole week, and I say this isn't worth it right now. Like I'd rather her blood sugar be 180 for a while, then for her to see me come into her room or onto her face time being like, Hey, I'm here to remind you that you're not doing the thing you're supposed to be doing. Because that's what it feels like no matter how nicely you do it. That's where the texts are like, I know, I got it. Like, that's what that means. It just means I don't want to think about this right now. And it's unfair, because it's, you know, one of the few things that if you decide not to think about it, I mean, honestly, it's, I don't know if it's minute for minute, but you are taken back in seconds off your life with this decision you're making, but we all do that, right? Like, like somebody's gonna make a decision. It's Friday, somebody's gonna make a decision tonight to have two big scotches and go away in their head, and they're probably going to lose 10 minutes off the back end of their life. It's a trade they've decided to make, right? And so if we're talking about freedom, and that freedom is the reason the the idea that freedom could be taken, is the reason you rebel. I do. I believe that. And so if you start attaching that directly to the diabetes, it's going to go the wrong way. Like it just is like because then that's going to be their self soothing is going to be not taking care of themselves. Erica smile because I use the I think I use the therapy word just like this idiots actually listening. Right, so they're gonna make the rebellion become Oh, I see. So the rebellion becomes their self soothing, which sends them down the path which makes you push back harder, which only strengthens it's more and that's why you haven't talked to your mom nicely since you were 1910. That took me 45 minutes to take me 45 minutes. 39 I'm getting better. Okay. Okay, all right. That all makes sense.

Erika Forsyth, MFT, LMFT 43:54
So the self I mean, I yeah, I think the self soothing or that's your, your coping, right? Like you feel like, in the moment, I don't want to take my insulin and jacked Bolus, if it's conscious sometimes, you know, we all forget sometimes. But if you're saying I'm out, I don't want to do this. I'm I'm don't want to face all of the emotion I have connected to this. So I'm going to cope in the moment by choosing to ignore it. By choosing not to do what I know I'm supposed to do, because it feels it feels it feels easier in the moment, it feels better, I feel more free. I feel like I have more control. And, and we're not always thinking about obviously the future implications just, it's hard to

Scott Benner 44:41
and then it'll become a pattern. And then you will really be in trouble. Like I saw one ad blood sugar for two hours isn't going to kill you. But if you make one at your norm because you've just like put up that wall and now there's no conversation to be had about it. And then eventually I hate to tell you, your kid's gonna get old and they're gonna leave and then wherever they They are is where they're going to be when they get out. And then now you're just blindly hoping that you know one of those things you've heard on the podcast so many times, like I met somebody and I wanted to be healthier, I decided I wanted to have a baby or something like that, unless one of those things happens, you'll just keep going. And the years and the months go by very, very quickly, you won't, you won't realize it, it will happen so fast. And your body, of course, on the physiological side, adjusts to the higher blood sugar, so you don't notice it anymore as much. And there's just nothing pushing you towards, towards helping yourself at that point. And you do feel like you're helping yourself. Because you mom, you can't tell me what to do. Oh, wow. Are you being serious? Are we just really early on? In humanity? Like, this can't be like the level of did only mean, like, we're not that far away from cavemen is what I'm saying.

Erika Forsyth, MFT, LMFT 45:54
You mean? How evolved? Are we? Yeah,

Scott Benner 45:56
not that far. Right. Don't you think?

Erika Forsyth, MFT, LMFT 46:04
Well, I think, Gosh, we've been given, you know, freedom to make choices, right? As since we were born, and to are we are we far off from us? How far off? Are we from just saying, you know, screw it, I'm gonna do what I want. I think when that pattern, when that becomes a pattern, then you obviously have, you've lost that space to make that show like, Oh, I'm making the choice to do what I want, right? Because it's just become habit. Whereas initially, you're, you're maybe consciously making more of a choice, I'd like I'm gonna do this other thing, because that's what I want to do. And then it just becomes habit. But when, when you can pause and look what's underneath that it's often even more emotion, such as shame, or blame. And so thinking about the teen, or, or the parent or the or the adult living with type one. You have maybe habitually just said, I, you know, I'm gonna figure this out tomorrow, or I just keep forgetting. You feel don't feel great underneath that.

Scott Benner 47:21
Yeah, I mean, this might seem like a right turn to people. But we're 400 years away from the beginning of like, the American frontier period, right? Where you would have like, traded your daughter for a couple of goats at some point, right? I'm not kidding. Like, that's a couple of 100 years ago, where are we still in the early 1900s, like late 1800s, early 1900s, you could just have a dispute with somebody and just shoot them. And everybody would just go well, yeah, he deserved it. And that was like the end of it. Like, so. We're not that far removed from that. And now we're trying to have all these big thoughts. And some of us I mean, I mean, honestly, I feel like I'm, I'm a fairly common sense person, I have a reasonable level of intelligence. And we just spent 39 minutes talking about something and my brain went, Oh, yeah, I see it now. But I don't know that that means that 10 minutes from now, I can actually do this in my life. Like on the fly while I'm living, it's not just going to happen, right? Like, I'm gonna make this small, incremental step that I hopefully passed on to my kid, he's gonna make a small incremental step that he'll pass on to his kid. And 400 years from now, we won't be shooting each other in the streets anymore. Like, you know, commonplace. And so that's what I'm saying. Like, it's our how this is gonna sound so like crunchy, I'm sorry, like, the length of our time commensurate to the length of history. Like, it's just, we're just, we really are a blip. And we're just moving things slowly, like very slowly. But in this moment in time, we're all stuck with emotions and thoughts and ideas that we about understand about 25%. And yet we're trying everyone's trying to do the right thing. But we're not like we're it almost feels like we're still going against our wiring. Does that make sense?

Erika Forsyth, MFT, LMFT 49:11
Like going against our wiring in terms of making the best decision in

Scott Benner 49:15
terms of your America, let me just be honest. I pulled out of the Walgreens parking lot the other day. And we were making a right turn into a red light. Like none of us were going anywhere. And a car was coming from my left. I did not cut him off. I didn't pull out quickly. He had plenty of time. He was speeding towards the red light. Then when I pulled out in front of him, he sped up. It was a it was a few like, right, right. And then the part of me that grew up outside of Philadelphia with his dad yelling at him was like, Yo, what are you doing? And like now I'm looking at him in my rearview mirror. Like if I had I have to get out the car and kill you. I guess this is where my life ends. Like suddenly this has become like important. And I know it's not right. I know it's not important. I'm not really mad. But there's something that lights up inside of me. So he comes Cook, like, crashing up to the rear of my car very close. And I am now yelling at him through my rear view mirror. And it's not like, Hey, what are you doing? It's like, I will kill you. And like, like, and like and my daughter is now with me. I am not that person. Generally speaking, she's got her hand on my hand on hand. She's like, Hey, it's okay. It felt like I was the Hulk. And she was Scarlett Johansson. And she was like, she was like, It's okay big guy. Like, like, and I'm like, I'm like, No, I'm sorry, I have to leave you and your brother and your mom, because I have to go kill this guy in the street now for this affront, right. And obviously, I get past that pretty quickly. And I'm like, Alright, I'm okay. Thank you. And we keep we keep moving up. And he is now gesturing to us. And it was not flattering gestures. He wasn't saying I love you with like the handbag or anything like that. And she's like, just ignore him. And I was I just ignored him, I was fine. She said, actually just make a left here. Like, let's let him go. And I'll go home. And I'm like, and we'll go home a different way. And I was like, you know, great idea. I get over into the left lane. I'm okay, I'm done. He drives by gives us the finger, I pull right back out behind him. And my, my daughter's like, what are we doing now. And I was like, I'm like, we're just going to intimidate him at this red light for a little bit. So he has to wonder if we're gonna get out of the car and hit him with a bat. So he has to live in that space for two minutes before the light turns green. And we go are several ways. I'm gonna, I'm gonna and and she goes, that's really what you're doing. And I'm like, yeah. And then I was like, oh my god, that is really what I'm doing. Like, I'm sitting behind him hoping that he is worried that I'm going to hurt him. And then the light turned green, I made a left and he went straight. And it was over. And I thought, yeah, like 150 years ago, I definitely would have shot you in the street. 100% I would have shot him if it was at 95. So you sign your wagon? Yeah. Oh, for just like, I don't know, for certain I don't feel like I can take a life. But I put myself back in 150 years, I put myself in different situations. And I think maybe, you know, like, so we're not that far away from all this. And then we're having these big conversations. And it's no wonder that everybody feels like, Oh, I'm anxious. And I don't know what to do about it. Or like, like, we're just not, we're not there yet. Like, I don't know, one other way to put that, like, we got more like, if this was a crock pot, like we got like eight more hours, you know what I mean?

Erika Forsyth, MFT, LMFT 52:42
So that's good.

Scott Benner 52:46
Are our potatoes are not soft yet, Erica. Anyway, so my point around all that is, is that while people are trying to live that a better life in this time period, and they feel like they're being met with so many, you know, blockades and roadblocks that they that their brains don't feel capable of getting around. While that's happening to everyone. And some of us are trying to live with children who have type one or other, you know, important issues to be dealt with, or our type on ourselves. And we are trying to make better decisions. When you know, our better angels are telling us one thing and the way our brain works is like, like flick pool monkey, basically, you know, like it's

Erika Forsyth, MFT, LMFT 53:29
Yeah, and I think sometimes the rebellion even though even actively while you're doing it, like just even if you're a car example, you're doing it then maybe there's a part of you like, why am I like you, you kind of looked sounded like you kind of went in and out of this. Like, yeah, that's what I'm doing. Why am I doing this? This is crazy. But then I'm still but I still want to do it.

Scott Benner 53:51
Yeah. Not a desire of mine. Yeah. And I grew up like that. Like, yeah, I grew up like I remember once I was on a back street with my father. I was maybe 15 or 16. He was driving. And no, I was learning to drive. I was 16. I was driving his car. And he was next to me. And we were driving home on a back street. And a guy flew up on us and went right around us and took off. And I had not been driving very long. And my dad demanded that I catch that man's car. He was like, catch him. And I was like, what? And he's like, catch him get in front of him and stop him. And I did that. And then my dad got out of the car, walked over to his car, got him to roll his window down a little bit, leaned in, spoke to him for a minute, came back, got in the car and said he'll never do that again. And I know my dad felt like he was policing the neighborhood he lived in. I know he felt like that and to this day. I believe in that. Like if someone doesn't do it who's going to like that idea? Still stuck there. it stuck with me. And meanwhile, everything about the scenario was very scary. And not something I wanted to do it in any way, shape or form. And yesterday, the same thing, like I know, it's the same exact thing. I didn't think of it till just now when we were talking. But by the way, this is why everyone should probably go to therapy. But but I didn't realize that until we were talking about like, that person had done something wrong. And it's my feeling that it's almost my job to make sure that they don't do it again, which almost doesn't make you know what oddly makes a lot of sense and no sense all at the same time. Right. Right. So

Erika Forsyth, MFT, LMFT 55:35
you want to make sure yeah, it's just your anger and rage is justified because you're trying to right, the wrong or, you know, reflect to him how he made a mistake. Yeah. And meanwhile,

Scott Benner 55:47
I've done things in traffic as an example, where I'm like, oh, like, that was a mistake. I turned somewhere I shouldn't have or something like that. I immediately am like, Oh, I'm so sorry. Like, I'm almost like, I was in a car going, Oh, my God, it's my fault. I'm sorry. Like it does, obviously me, you know, like, but on that other end of it, like he was speeding towards a bunch of people stopping at a red light. I got in front of him. And it lit something up in him. He did not want to be behind someone else. And then it suddenly felt personal after that. Yeah. When obviously it's not. Anyway, fascinating. Was I rebelling against something? I don't know. To think about that little

Erika Forsyth, MFT, LMFT 56:26
more rebelling against maybe what you weren't, you knew what was right and wrong. I don't know. I do have a stroke. It felt right to you at the moment. But

Scott Benner 56:35
yeah, but I mean, I joked a little earlier. But like there is that feeling like that in the pursuit of what's right. It's okay, if I have to die in the street for it, which is silly. You know what I mean? And the only thing that stops me like Arden told me later she goes, now that I'm in the south, I know. I'm supposed to tell you all that she's in Chicago, but she's going this college in the South. She goes, when I first got down there, I thought, Oh my God, these people really don't drive well. And it was in. She's like, it was upsetting. And she goes, but I've let it all go. And I said why she goes, I don't think they know. And she was be I think they all have a gun. And I was I was like, okay, she goes, so you know, I don't want to get shot. So I don't care. And I was like, wow, that's a good argument for everybody having a hand. Conquer write down. She's like, I don't care what you do over there. Anyway, Erica, this is a big problem, right? For people with diabetes and their kids.

Erika Forsyth, MFT, LMFT 57:37
It is a challenge for sure. And I think understanding part of it is normal, no matter how fabulous and connected. You are with your teen or your teen is with you. Part of it's going to be natural and normal. And to allow those moments to happen. As much I know, it is so challenging. But then also, trying to find those inroads in those moments that it is it is more than the behavior that you're seeing on the outside which you are, which looks like rebellion. And finding those moments and inroads to sit and talk and reflect and connect Anymote. And however it might, it might be 30 seconds. I think also, we have these expectations. Sometimes we're gonna sit and have this long, you know, dialogue, maybe it's a quick walk, it's a quick drive. But validating your teen and their emotions around diabetes will go very far. And I know a lot of you guys do that. And it's still not enough and it is challenging. But stick to keep at it.

Scott Benner 58:47
I appreciate you doing this this topics been on my list for a while because I think I just wanted to say to people don't let your monkey brains ruin your health. If you can help it. That's pretty much pretty much my mess.

Erika Forsyth, MFT, LMFT 58:58
You got it in Yeah.

Scott Benner 59:00
Okay. All right. Thank you so much.

Erika Forsyth, MFT, LMFT 59:02
You're welcome.

Scott Benner 59:11
Eric is delightful, and she resides at Erica forsythe.com Omni pod is a sponsor of the podcast and specifically of this episode, thank them by going to Omni pod.com forward slash juice box to get started today to learn more to get our free trial, where to check your coverage and of course us med.com forward slash juicebox get your free benefits check. Don't like the internet. Use the phone 888-721-1514 Get your supplies the same way Arden does from us MIT. I want to thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

#947 Serious Inquiries Only

Rags has had type 1 diabetes since he was one year old.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends and welcome to episode 947 of the Juicebox Podcast

my guest today has had type one diabetes since he was a year old. We're going to talk a lot about kidney disease, transplants, and type one diabetes. While you're listening. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan for becoming bold with insulin. If you're looking to save 35% on clothing, towels, or bedding, go to cozy earth.com and use the offer code juice box at checkout. If you'd like to get a free year supply of vitamin D and five free travel packs with your first order of ag one you can do that with my link. Drink ag one.com forward slash juice box looking for community around type one diabetes check out Juicebox Podcast type one diabetes on Facebook. What else? Huh? Gotta be something else. No, check out the diabetes Pro Tip series begins at episode 210 In your podcast player. Speaking of podcast players, Have you followed or subscribed? Please do. This episode of The Juicebox Podcast is sponsored by Dexcom makers of the Dexcom G seven continuous glucose monitoring system. Arden is wearing the Dexcom G seven right now it is tiny it is easy to use and it's accurate you're gonna love it dexcom.com forward slash juicebox Oh, you know what else about that? Dexcom I just read a headline today that says Dexcom g7 receives Health Canada approval. Congratulations Canada. Happy Canada Day. Wait that's actually a holiday there. Nevermind. today's podcast is also sponsored by the contour next gen blood glucose meter contour next.com forward slash juicebox. You can get the same meter Arden has or a number of other accurate meters from contour all at my link contour next one.com forward slash juicebox links in the show notes. Links at Juicebox Podcast. I can't it's late at night. I'm punchy sorry.

Ragnar 2:29
My name is Ragnar. But most people call me rags. 52 years old. diagnosed when I was a year old. I live in Hawthorne, California. We just been here about a year. I grew up in Manhattan, Sausalito and Manhattan Beach. And that's about it.

Scott Benner 2:47
Wow. Do me a favor. Don't let that microphone on that wire touch something. Okay. Okay. You were tagging us when you were a year old? Yeah. 51 years ago? Yeah. Oh, my. All right. Well, we got stuff to talk about them. So I'm assuming you don't remember anything about being noticed?

Ragnar 3:08
No, I just know I've been diabetic the whole time. So my mom, I got the story. My mom. My mom was dropping me off at daycare. And I kept getting strep throat all the time. And so she finally went to the hospital have me checked out. And they did a couple of tests. And they said, Oh, we have diabetes. And my parents were like, well with fat. And then my dad called one of his friends. Dr. Kroll white, who's a friend of his from Michigan. My dad said, Well, what's diabetes and he kind of told them that he has high blood sugar. And that was kind of about it. So they were given an orange and did a couple of shots in the orange and then they said There you go. Good luck. We'll talk to you soon. about it.

Scott Benner 3:54
You changed my thought all of a sudden, you're still you're alive. I must work

Ragnar 3:59
out okay. Yeah, it was I was put on a regular insulin and lintec insulin at the time in 1970. And that was what was done two shots a day. You're not testing my mum would wake me up in the middle of night and test my urine which we know now nothing but at the time that she she thought that was the best thing to do. They won't give me any any tools like you guys have today. But

Scott Benner 4:25
your mom your mom would wake you every night like every night

Ragnar 4:29
test my pee pee in a cup or light I don't know how it worked. I have no idea. Or you know if I was one I was probably just peeing regardless hit me up and just try to get me to pee.

Scott Benner 4:41
She must have been she must have been so concerned. You know? Oh, yeah. Just

Ragnar 4:45
just like all the parents are today that we are on the Facebook group and you know, we hear it's the same same amount of fear and anxiety and all that stuff that will show tools.

Scott Benner 4:56
Yeah, no, exactly. No, she was just scrambling to get any kind of data that she could probably just to make herself feel comfortable, you know, before we move forward, you want me to call your eggs? Yeah, yeah. Before we move forward, Rex, I have to tell you how disappointed I am in myself that I am 51 years old. And yet I started to, like, I have a little whiteboard here. And I started to let go, I was like, I'm gonna subtract, you know, 2022 from 52. And then And then you said 1970, and I thought, oh, yeah, the Europe before I was born, because He's a year older than me. Really? I can't tell you how disappointed I was.

Ragnar 5:37
Minute can use that. That's still our math you always have. So

Scott Benner 5:40
I just I really just thought for a second I thought, stop just you know, and the recording. It's over here an idiot. Oh. My goodness. So are your parents around still?

Ragnar 5:53
Yeah, they are. My my, my mom was five miles from and my dad lives in Venice Beach, California. So they're both here. So that thank God for that. I'm really grateful for that. So

Scott Benner 6:03
how much of the because I imagine you transition through a number of different care, you know, yeah, management systems through the years. What age do you think your parents stopped knowing about your diabetes care?

Ragnar 6:22
Probably after my triadic, kidney, pancreas transplant, so probably after my transplant, when I started doing, you know, the pump thing, and and then it's so interesting to loop. So they don't quite understand the loop and the pump thing, then they don't really have an idea, but they know that I do that thing. And they know, I know how to do this new thing. And my dad thinks he you know, he tries to understand what loop is, but it's just too hard to explain. And he's kind of he knows to take care of myself. And that's Yeah, after college I pretty Yeah. After college pretty much take care of myself.

Scott Benner 6:57
Yeah, your mom didn't come up to you, like when your 30s and ask you to pay on something or anything like that.

Ragnar 7:01
No, but she always says she'll read you. How are you? And then that means how is your diabetes net? How are you? So I finally got to a point like, you want to ask you about how I'm doing well, you want to know how I am how my diabetes is doing. So he finally got off the bat. She also say hey, right radio your low right now, you know, she can tell him a little everyone can tell him well, before I'm low. Even my dad, some will say I'm low on them. But my wife and my mom can both tell them well, so

Scott Benner 7:32
well. So let's figure this out a little bit. So yeah, you had a double transplant. How long ago?

Ragnar 7:37
That was a 1990. Was that? No 19? No, no, that wasn't that wasn't 1997 I mean, first, kidney transplant 1990. And then I had my kidney, pancreas and at 97. That lasted quite a long time. So okay, that was nice not to be dead, that have diabetes anymore.

Scott Benner 7:57
And so, okay, well, hold on. There's a lot here. So, yeah, there's a lot here for sure. So you made it basically 20 years before you needed kidneys. Yeah. All right. And that entire 20 year time you're managing in a way that mostly people don't do anymore.

Ragnar 8:13
Yeah, I was doing. So I did the regular lactate for a long time. Then I went to diabetic camp. There's commando camp when I was like six. And I learned a lot there. My whole life. I learned everything. diabetes camp, because we had to go up to the table to you go to stand in line, the doctor would tell you what insulin to do. But I remember when I was sick, this doctor named we called her doc asked me what I thought I should do for my insulin. So I was like, Well, you know, I said some number. And she's like, Well, no, this kind of goes back quite a bit. So you go to the shot line and get your insulin that you had to get, and you would get your shot line and wait about a half an hour before you can go to breakfast. So that was their Pre-Bolus. And without knowing I was Pre-Bolus. And at the time. And so yeah, so did that. The regular lens, hey, and then and then when I was in high school, I had a lot of difficult times in high school because it was just kind of shooting darts in a dark, dark room and hopefully you hit the board. But he and I have insulin reactions at school and waking up in an ambulance and that kind of stuff went on for me.

Scott Benner 9:20
So there's there's no real I don't know what the word is I'm looking for. I was gonna say method. But that was the method but there was it was either working or it wasn't working. The goal was just for you not to die today. Is that pretty much right?

Ragnar 9:34
I think so that was pretty much the idea. You know, and I had a couple of close calls there. One time I had a really bad insulin reaction and seizure. And my dad tried doing the glucagon thing with a needle and that thing and all the needles broke up the needle broken. And my dad called the paramedics and the paramedics came and the story was one guy Lance happened to be behind because the rig in the paramedics truck are out and he grabbed the ambulance. It's from the, from the ambulance bear. And he came and kind of saved my life. He told me I was asked for eating. So I mean, my dad put orange juice down my mouth, and all this other stuff. And I was choking on my own on the fluid. So the guy turned me upside down. And so my round and they brought me to a half. So it's a whole big, the big deal was in the hospital and stuff like that. So if you're someone seizing and can't really control their fluid, don't put orange juice down their mouth because they can go do a thing called aspirate. Yeah. Which fluids gets in the lungs, and it's a it's a mess.

Scott Benner 10:33
What, um, how many times? Do you think that happened to you? Like some, some version of like, being that low?

Ragnar 10:40
Quite a bit for me, I can't even have a number for you. That was a lot. Okay. Yeah, I see. I, you know, you know, enough that that kids knew that I was at high school knew I was diabetic, you know, like, enough, but not enough. They also just treated me like a normal kid too. But I had I had situations and in school where I had, you know, then I was doing blood sugar tests by the, you know, so at the age of so, I think at the age of 10. At diabetes camp we did we did blood sugar tests for the first time with the guillotine. Sugar test, you put the thing on the strip and wait two minutes, not five seconds, but wait two minutes, and then wipe it off. wait another minute. Took a long time to do a blood sugar test.

Scott Benner 11:25
Jenny. Jenny was just telling me about the guillotine. pokers the other day while we were recording, it's funny you brought that up?

Ragnar 11:34
Yeah, it was just like it was you know, it was scary. But you had to do it needed to really squeeze your finger and just you know, but not looking now. So I need to do a blood sugar test. And like, no problem. What five seconds? Got it?

Scott Benner 11:47
Just seems real easy.

Ragnar 11:49
Yeah, like, that's great. You know, and then and then I had my, so I had Mike. So I so in college, I was cycling, I was playing water polo and Psych and bike racing. And the doctor at the time was new doctor, Dr. Mary Simon. And she said, let's try this thing called Ultra Lanti. So at that time, at camp, I was a camp counselor as in charge of the sports program or something I can't remember. But so we spent an entire summer like three months trying to figure out my ultra latte dose. And that was, to me the best control I've ever had. I mean, at the time was the best control I had. I was probably doing like 10 to 20 blood sugar tests glucose just a day. And then I would just do a little shots of regular the whole time, you know, fast acting, yeah, quote unquote, fast acting insulin. And that was really good control at the time, but I was still doing blood sugar tests all the time. And and it was still kind of a shot in the dark because you just get that moment of that whatever your blood sugar is, at that time was like a blood sugar is there was no like forward thing of Oh, yeah, I'm gonna I'm dropping dropping down later. I'm like, okay.

Scott Benner 12:54
We did a. Yesterday, Arden had a her pump site went bad. But she hadn't eaten all morning. So we kind of didn't know, because it was able to hold on. It was hold her her nice and steady without food, right. And so I started she's a college, I started looking at thinking, Well, I hope she changes this pump before. You know, before she eats. And she went to class and came back. And I guess she thought, well, let me try to like get one more Bolus out of this thing. And she put her insulin in. And it was just from there. It was just a slow climb. Like just it was happening. It was 9095 100. I was like, this is not working, you know, so I texted her and I said, Hey, I think this pot is shot. You know, like, I think he gotta get away from it. And she's like, well, after I do this, and this, I'll look at it as I go. Okay. So that turned into, like, the highest blood sugar she's had in a long time, you know, and so I'm telling you, she was like, 300. And I was like, I didn't listen. I know, like, you gotta change the pod now. And she's like, Okay, I will, I will. But it took her like four hours to do it. Right. And then she did it. And I said, okay, like, Would you like some help getting this blood sugar down? Because it's a new pump. It's not going to work as well as you expect. And she's like, Yeah, okay. And so my car, right? I'm like, I'm asking you a lot of consent all of a sudden. Right? Right. And, um, and I, you know, I'm taking that from stories. You know, in my own life, where I've, I've looked at Arden and seen her like diabetes before. I've seen her learn from people, like you just told me like, you know, your mom only asks how your diabetes is not used. So I'm like, so she says, okay, you know, like, give me a hand here. I said, Okay, well, she's looping. I said, open the loop up. I said, let's get a nice stable, a basil going. And I said, and let's make a Bolus like this. You know, so we put the Bolus in. And she went to class in the afternoon, and I texted her and I said, I'm going to help you watch this because I know you're in class, but there's going to be a moment where we're going to have to close the loop and try to catch it. So We got to a spot where we did. And it almost worked. You know what I mean? Like it was like it was coming down, coming down and then boom, we close. We opened the loop up, let the loop work. It took the basil way. And I don't know how this happened. But it ended up where she was 70 Right when she got to dinner. Oh, it was like the dumbest luck. You know what I mean? Like she had don't get me wrong. She's stuff with her. So like, I'm texting her. And I'm like, Hey, listen, why don't we slow this down a little bit with a couple of gummy bears or whatever you have on you. Like, you know, I know you're going to dinner but like, let's just throw something in here. Well, she didn't respond to me. Which, which I now know means I disagree with you. So, so she got herself, you know, but she knew she had to walk back to her room. So I was a little like, I don't want her walking while she's falling. And you know, and I'll tell you what I do. For my own comfort, is that I, I use Find My iPhone. So we all have iPhones. It's one of the things that my kids know, like, if you want to own an iPhone, and you think I'm gonna pay for it, I need to be able to see where the phone is. And so like, I could see her walking back to where she was going for food. I knew she was in the cafeteria when her blood sugar got to 70 but it was still dropping really slowly. Right? And this girl like boluses like you don't I mean, like she, she puts her she puts it in, but it's loop and she's now at 65 It's not going to Bolus for and, and you know, so I'm like, I'm trying not to freak out. Right? You know what I mean? Like, I know, yeah, I know. I can see she's where the food is. She's She I know, she sees my text. I know, she understands what's happening. And And finally, I can tell she ate because she leveled out. And then I said you should put in the suggested insulin now because it's not going to Bolus till it gets above the cutoff, which I think we have set at like 66 or something like that. Right. And and she's and she didn't answer me. But I could see on Nightscout that she put the Bolus said. And it was amazing. She went up like 145 and leveled out and was good on 99 all night long, like really fantastic. But all that's only possible because of the data and the communication and the technology. And I'm imagining you and you were in this very same situation every day your life. You mean you didn't know it. So

Ragnar 17:32
here's so here's a fun time I was at school at college, I was at California State University Chico and I knew of electric was largely a test I was low. So I was like make myself a peanut butter and jelly sandwich at the time, which is a good thing to have a jelly gets you up and the bread kind of keeps a medium and a peanut butter lasts a long time. So like I have PBJ it's good chance. So also on the phone rings. So all those younger people out there, just have a tie on the phone. So you know it'd be a cord and phone would only reach so far. So my mom is on the phone. So hi, mom, Baba. Oh, hi, ready? You sound kind of low. Yeah. And I'm taking care of it. So I'm trying to make the rest of the peanut butter and jelly sandwich but the phone doesn't quite reach in my hands. I can't quite reach the finish making the peanut butter jelly sandwich. So like mama, you know, I'm you know, but I didn't know how to swim. I'm here. I'm low media for phone. But I would do today. But then I'm like, oh, keep talking all sudden in the background here. Oops. I said we had two phone lines at the time said Mom Did you call the fire department? Yeah, honey it because you set it really low.

Scott Benner 18:37
So at the same time protecting you and keeping you from eating.

Ragnar 18:42
So my mom says my stepdad norm called the ambulance on the line. So I gotta go. Clean up the phone. Man. If eating the sandwich was pretty low by the time those guys showed up. So come in the house. So yeah, give me some I had some sugar. So can I send the AMA which is against medical advice? Like yeah, sure. So they sent I sent to me and they left but it's still it's just like, back then if my mom had the Dexcom she could assume no, I was low. I was taking him taking care of it. Like you know, that had been a different story. But back then it was just you know, find my voice. Well, yeah,

Scott Benner 19:21
this whole story seems like a humble brag that you had two phone lines growing up in your house. Yeah.

Ragnar 19:28
I know. And so that was that was a good thing. It's probably

Scott Benner 19:31
people listening would have no idea what a big deal that was that you had two different phone numbers. Yeah, yeah, it's funny. Yeah, exactly. Yeah. So I just think that I just don't know like while you're talking I just imagine how often your blood sugar was up and dropping and and because you were using insulin that didn't work as rapidly. The lows the lows were bad, and they would get you eventually but it took longer to get to it whereas now with a faster I can get So if you're, you know, if you're 6055 50, you're gonna be 30 in 10 minutes if you're falling back, you know, so your falls were slower sometimes. But

Ragnar 20:12
yeah, so that wasn't that wasn't 1990. So I was using that human log man. Oh, boy. Yeah. So you're dropping fast, you know, you're dropping fast. So you like you're shaking? You know? There. Yeah. Couldn't talk, you know, your printer. Hey, could you use some sugar? Like, yes. Help me out. So,

Scott Benner 20:33
in that, in that first 20 years, do you have any idea that you're going to have health problems? Or do you feel like you're doing well?

Ragnar 20:40
Well, no, I, my thing was I had, so my kidney disease came from streptococcal glomerular nephritis, which is a big word for strep throat causes late and kidney disease. So I had strep throat when I was a baby. And then I didn't show any signs of kidney dysfunction child was like 13. So the diabetes and caused my my kidney failure, but it didn't help it. Put it that way,

Scott Benner 21:02
right. Oh, no. Okay. Well, that's I was gonna Google that, but I got lost. So

Ragnar 21:06
yeah, yeah, streptococcal. It's really hard to start since streptococcal glomerulonephritis. So it's strep throat and the glomerular is this functional unit of the kidney, and is a swelling of that functional unit of the kidney. So that's very causes. So if you don't treat strep throat aggressively, like they did back in the 1970s 60s, late 60s, early 70s, then you have this latent kidney thing. Whereas today, if that happens, the right arm via strep throat, like right away, because I don't want people to have kidney disease,

Scott Benner 21:39
PSTN is what they call it. Yeah, a rare complication. A rare complication from a prior group. A strep infection is a kidney disease that can develop after infections caused by bacteria called a streptococcus. How about that? Well, that's some crappy luck. Oh, no kidding. So what's the first sign you have? That your kidneys aren't functioning?

Ragnar 22:02
I'm just the doctor. I did blood tests, you know, like to see the endocrinologist, you know, his name is Dr. Phil from and he since passed, but he was a great doctor. And so it all looks like your kidney is, you know, kidneys aren't working that well. And I have to go see this doctor. I'm like, okay, you know, and that's how they did it by blood tests. And so, so it's the same type of thing. I have, you know, creatine of 1.2, which is a little high. You know, it's like a blood sugar of 130. Kinda like, you know, and then, and then it goes back down to like, my thing, I'd go back down to point number like 2.5, which back to a blood sugar 100. And then I kind of bounced up and down, up and down, and they couldn't figure it out. So I saw a special special doctor, Dr. Gabriel Janowicz, at UCLA Medical Center, and that's his only pediatric patient and he determined that there's the strep throat, the, the streptococcal glomerulonephritis, that causes my kidney would go up and down, up and down, up and down. So when I was 21, in college, I had my first kidney transplant. So my, my dad gave me candy, which is wonderful. And so all my friends, but you know, they arrested you for what you do for you know, winter break, because in college at my school, we had six week winter breaks, you know, guys went to Europe and was skiing and, you know, skiing, you know, Colorado. Rosewood, you Oh, I had a kidney transplant, you know, so I want to have my transplant recoverable back to school. So what I did

Scott Benner 23:23
know that's insane. And your I'm sorry, your you mentioned the stepfather earlier, but your father gave you this.

Ragnar 23:29
I thought yeah, my father. Yeah. My father Eric. Yeah. Yeah.

Scott Benner 23:32
And yeah, that's insane. How did he make up for the rest of his life with one kidney?

Ragnar 23:38
Oh, he's fine. He's so he's see he's see. He's 82 today. He's doing fine. He's working great. He was working he's, he's retired now. But he was working full time and he's had no problems.

Scott Benner 23:50
So but then that kidney only? Well, I say only but last year seven,

Ragnar 23:55
seven, yeah, seven, seven and a half years. Correct.

Scott Benner 23:57
Okay. And then tell me about that process.

Ragnar 24:01
So that process so somebody even indicating and that was at that time was really nerve racking and you're in the hospital for like two or three weeks or four weeks now you're on hold for like five days, but and so I had all the drugs and all that stuff. And I had this thing called chronic rejection. So my immune system is strong enough that it it just overrode the drugs. So it's but I had a really good match with my dad when I was seven years, and that kind of sucks when it fails, because you just you just starting over again. So you get the transplant and then it doesn't it works great and you're great and you know, doing all the stuff and done it. And then it fails. And it it's kind of devastating at the time I've been through. I've been through five total transplants. So that was my first one and it that was it was really tough, but you just have to it's like with anything you got. It's the mental attitude and how you deal with it. You got to just deal with it. And then so I went on, I was on dialysis for about A year and a half and I got a kidney pancreas transplant when I was 27. Okay, that lasted for and that lasted for like 12 to 14 years, something like that. But it was great that my dad gave me that kidney that was wonderful that he's able to do that. So

Scott Benner 25:14
no, it's amazing. I actually wondered, Is there guilt when the kidney fails and you but you do you ever think oh, it would have been fine in him? Where do you are just happy for the seven years.

Ragnar 25:26
I was happy. I think we talked about that early. And it was the transplant. We're both happy with that. Because it gave me able to finish college I was able to start worse. I played sports and you know, water polo and cycling still and all that kind of stuff surfing. So did all that. And so it gave me that time.

Scott Benner 25:43
Okay, pay be careful with that microphone. Rex. Oh, sorry. No, that's okay. So So you basically your dad's kidney got you to about 28 years old. Yeah, but Correct. Okay. Yeah. And then from there, it's a

Ragnar 25:56
kidney pancreas transplant. So if you need a kidney transplant, everyone out there should get the pancreas along with it. Because you got to take the same drugs at the service level is complicated, but we'd have to do it, you might as well do both, because then it's kind of you don't have to have diabetes for a

Scott Benner 26:11
little while. Right. So it was great. So okay, so you did at 28 You started dialysis? How long did that go? Before they found? work?

Ragnar 26:19
I had, it was about a year and a half dialysis for that. Okay. And yeah, that's dialysis isn't fun, but it's just kind of like anything, you know, I that at that time, I was doing dialysis three days a week, that's for sure. A lot because the United States allows later on my life is different story. But I had, I did dialysis like six days a week. Because the more dialysis you do, the better you feel, the better your blood is, like, you know, it's like doing more insulin, just the better you do, the more control you have.

Scott Benner 26:48
How were you doing a data center? Or had they had it set up at your home?

Ragnar 26:52
No, no, I saw my first that time and night when I was like 2829 I hadn't I didn't dialysis center. So I went in three days a week, you know, and all that. And I'll never forget this guy that was there. He has an old

Scott Benner 27:13
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Ragnar 31:11
Never forget this guy that was there. He he had this happen said attitude is everything. And that really stuck with me. So that was really cool. Because, you know, you can get down and down out and depressed about any conditions you have. If you have a good attitude about it, then it's just like, oh, I deal with this. It's not not the end of the road or end of life. It's just something you got to do.

Scott Benner 31:31
earaches I think of you as a happy person with our interactions that we've had. Yeah, yeah. So So walk me through it a little bit. Go to she go to the dialysis center. You can't drive home. So you need a ride? I imagine. No,

Ragnar 31:44
I would, I would I got to a point where I was, I would. Sometimes I rode my bike there. Sometimes I would drive there because I was working at the time I was working at UCLA Medical Center and the cardiac care unit. And so it's doing that. And that was great, because the hospital had three days, three days a week shift. So I do dialysis like Monday, Wednesday, Friday, or Tuesday, Thursday, Saturday. And sometimes I would, I would you know, when I first started, I've just I drive and my dad would drive me and stuff like that. But then I got kind of comfortable with it. And so then I just was just living life and I had to go through this treatment and go do it and be done. You know, okay, that didn't work.

Scott Benner 32:21
How long are you there, like so they you have a port I would imagine, right they give yet

Ragnar 32:26
they have a thing called the AV fistula. So they take in your arm, and your wrist or in your, in your bicep, there's a artery and a vein, and they put them together, and they make one vessel out of that. And so that's one vessel is called the AV fistula. And they put a needle in the, in the lower part of it, and then that's the atrium where the blood goes out of your body out of your body through the machine. And that goes back into the needle above an upper part of your arm. And that's the venous side. So that goes through the the coast of the blood goes through a filter, that hifi flushing or reverse osmosis filter, and then it goes gets cleaned and comes back into your body.

Scott Benner 33:05
Yeah, so they're literally removing the blood from your body cleaning and putting it back. Yeah.

Ragnar 33:11
And they'll clean it by doing a salt exchange. So what happens is if you say your potassium level is high, let's say it'll 566 milligram potassium levels, so they put a high concentration of bath in there, because salt will flow from a high flow to a low flow. So they'll put like three in there like three milligrams of potassium so low salt will come across in getting the air removed out of your body.

Scott Benner 33:35
Geez, it's amazing. Somebody figured out how to do that.

Ragnar 33:39
It's quite as really as amazing when you need when you need

Scott Benner 33:43
dialysis. Do you feel your Do you feel your energy lowering? Like how do you know it's been a while since you've had

Ragnar 33:50
it? Yeah, I use it's kind of like you're really like having a really high blood sugar or feeling after you've been really low and you feel just kind of allergic and tired and don't have any energy and you have a hard time thinking about things like get doing tasks, so it can wipe you out. It's really wipes you out

Scott Benner 34:12
the day after the process you're okay to deliver. Yeah,

Ragnar 34:16
I was okay. I felt good. Some people aren't but I was at the time I was young. I felt good. So yeah, yeah, I just kind of made myself do it anyway. So

Scott Benner 34:26
you did that for a year and a half year and a half then you got to new kidneys and a pancreas.

Ragnar 34:32
No, I got to just so they took the old one out because it was rejecting so they don't want to have an immune response. So they took the old kidney out. Oh, I got it. I got a new one a kidney and pancreas from the same person from African American lady in short, in Arizona. I got her kidneys, kidney and pancreas and that lasted for a long time. That was that was really hard that when I first got out of surgery, I was like, Why did I do this? It's not like you got hit by a Mack truck. But it worked right away. It was there. Amazing.

Scott Benner 35:00
So you, you woke up from that surgery? You didn't have diabetes anymore? No. Wow.

Ragnar 35:07
So I don't know if I've actually had diabetes for 51 years, so I need to like subtract the amount of time I have the kidney pincushions I don't know. Yeah,

Scott Benner 35:14
I Yeah, it seems that what do they call that Stolen Valor? So, from 1997 Until when

Ragnar 35:27

See, I think like 97 to what was it be 3790 9899? Like, like 20 like 2010 Maybe something like that. 2011 Okay, see, you got ya know, so no, sorry. 2012 is because I stopped. Yeah, so I got so I got 22 Sorry.

Scott Benner 35:54
You got 15 years with no diabetes. That Yeah. And but you're taking anti rejection medications during that? Yes. Right. And I imagine you still do because you have the kidneys still.

Ragnar 36:04
Yeah, I have the new cab a new kidney. I got a new one.

Scott Benner 36:06
So what are the anti rejection meds like?

Ragnar 36:10
Well, they're okay. It's just like taking it's like any medicine you have to take it's when you first take initiative take your first like medications is a lot of them. So you have like antifungal antibacterial, antiviral your program your progress is the main main drug your immune system has like 12 channels. I'm not a doctor but has 12 channels. And so the the called interleukins and each one of the transplant drugs was PROGRAF. One is my fortaco. One is prednisone, prednisone is anti inflammatory, but my four tick and progress block those highways, it's like you have a big highway coming down. And wherever you live, and they can just put a block on the highway, so then that then means this response can't really happen or weakens it. So that's what those drugs doing. And those drugs have side effects. The PROGRAF drugs the main drug you get you can get thing called tremor when you have too much of it and your body makes you feel a little loopy or anxiety. And then my four day calves you have side effects you have is like stomach issues GI distress, stomach stuff. And prednisone. If you have too much of a gimmick, you really really crazy like my last, my transplant in college, when it was rejecting. I got up until like, two o'clock in the morning, I cleaned my bathroom, the kitchen floor with a toothbrush, you know and organize all my college notes. So

Scott Benner 37:30
I got a steroid pack. I don't know a few months ago, for something I got bit by something. Anyway. So boring story, actually, it's a great story, but it doesn't fit here. But But I got put on the pack. And the pharmacist messed up the script. And had me take way too many upfront and I figured it out about 48 hours in because I felt like Superman. Yeah, I was like, my body had no aches or pains or creeks and I had all this crazy energy. And I was like What the hell's going on? And so I dumped out the pills and looked at the rest of the dosing schedule. And I was like, I don't have enough pills to get through this room. So I had taken way too many upfront, non dishing how quickly that feeling got to me.

Ragnar 38:18
Yeah, and then also like, it makes you really emotional too. So you can like you watch a hallmark commercial, like a dog and you know, mom or whatever, and you start crying. We get really angry snap really quickly. Your wife or your kid, you know, like, really like edgy. You gotta like wanted to bite your tongue.

Scott Benner 38:33
Wow. Well, okay, so I guess I need to ask you. You've had diabetes, not had it and gotten it back again.

Ragnar 38:43
Yeah, so that's a story. That's interesting. When I got a bad result, when I had my pick of transplant, I was like you when you'd hit your Dexcom I'll do I would do it. Like have a coke and do a blood sugar test to be like at, like, you know, after a call could be like at eat something, whatever. No, like at 90 at night. So finally, one time, I wasn't feeling like my kidney started rejecting. So I did a test. And my blood sugar was like 180. So like, this is a you know, pancreas started reject. So I went to the pharmacy bought some insulin at the pharmacy, some needles, I gave myself a shot. And then and then the doctor said, Oh, they gave me that form. And some other drugs have slowed down and just ended up rejecting but but yeah, so that was interesting. Because I was a camp counselor. I would go to the we had this thing called them. We talked to other families. Like the whole bunch of diabetics on this board and family camp, we'd have the pantry come and talk to us about our experiences and stuff. And I'll never forget I finally understood my why my mom and dad always asked I was doing this because they cared. It wasn't because they were trying to get on me. Yeah. So that was really important for me to understand that. So when I say that I really understood that even more so. After I got no no it was like because I grew up with it. I didn't know what it's like to get it but now I didn't know what it's like to get it And at least I know what to do ahead of time. But, but yeah, I was still pretty, you know, like, doing it not again, you know. So anyways,

Scott Benner 40:08
I do my best to make sure our to knows why, you know, like she Yeah, she texted me back kind of short recently. And I think I responded with something like, I know you don't want me involved in this as much as I am at the moment. I'm sorry that this is what's happening. But you know, I love you and we're not going to let you not be okay, so

Ragnar 40:28
yeah, no, that's yeah. I mean, if my parents had had the tools and stuff that's available today, I think things would have been much better for them. And for me, I think would have been a lot more

Scott Benner 40:40
able they had the they had the motivation and the desire. They just didn't have anything to work with. Yeah, exactly. So hey, so that that pancreas after the transplant, was it rejected, or did you get diabetes again?

Ragnar 40:53
No. Yeah. So rejected that. So the chance to transplant was they don't believe it in your body? But it's I was diabetic, right away again, type one. Okay. Yeah. No, type two, unfortunately.

Scott Benner 41:05
I'll take anything I can get you so. But those those kidneys didn't last either, though, right? You got another surgery after that? Or am I

Ragnar 41:16
so then so after so then I waited to that one happened? Yeah. And then so after tenure, I was 10 years on dialysis. And so I was working full time and my, my, my pacemaker job, and then also in medical devices and stuff and go into surgeries and all that kind of stuff. And they had home hemodialysis. So I do work all day, come home to dialysis, get up go work again. I did that. But I was doing that like 667 days a week. Because there was a study done and it's done on November not a doctor or anything. But I think there was a study done in Italy where they did quality of life compared to amount of hours of dialysis. And they found out if you have 15 hours of dialysis or more you quality life will be pretty normal. So in home dialysis, you can do you do three days, three hours a day. So you do like, like 18 to 21 hours a week. Sometimes I do 23 hours a week. So I felt pretty good. I was doing triathlons on on dialysis and surfing and working and everything like that. So. So the more you do, the better it is.

Scott Benner 42:19
Yeah. Can I ask some more more like, psychological questions about yeah, having it not having it for so long? And then having it again? Yeah, yeah. Is it harder the second time? Or do you because you were so young the first time it did it feel like, I just I can't imagine I don't know the right questions to ask you.

Ragnar 42:41
Right. So. So yes, I know what you mean. So so so it wasn't, it was a bummer. And I was disappointed, but I knew exactly what to do. Because of the camp I went to when I was a kid, their skin metal camp, I was taught how to live well with diabetes. So I had this all this education from you know, through the years of having to deal with this condition. And, and so I was able to step back in pretty quickly, I was pretty bummed because I couldn't you know, the sushi rice or whatever else or whatever else. I think that for me, it was hard. It was the vowel system the diabetes because I got to a point and diabetes that was you know, relatively pretty in control the ultra lenti and all that stuff and then had the pancreas so you know, so I went back to camp called Camp. It took me forever to get insulin pump. And I had the first Dexcom I thought that was amazing technology, both of it, but no one told me at the hospital I was at to use fast acting insulin, so I use old regular insulin. And it didn't work too well if the pump so the but yeah, so it was it was it was difficult, but it wasn't unmanageable. I wasn't depressed or anything like I was more depressed about losing the kidney, and then I was about the diabetes,

Scott Benner 43:58
because the the diabetes is manageable on site and the kidney means Dialysis again, that

Ragnar 44:05
exactly, and it really interrupts your life more so than diabetes because diabetes and so go do stuff, you know, just I just got to take my, my backpack that I have, you know, I still have the same kind of stuff I had when I was a kid. My high school had an orange backpack. Now I have a black one anyways, that's put on my sugar and stuff in there.

Scott Benner 44:24
i When my friend Mike was getting dialysis, I feel like his life was either getting dialysis or recovering from dialysis. Right. You know, he got to the point where he couldn't work.

Ragnar 44:37
And what and what what time? What time was that in like the 80s or no?

Scott Benner 44:41
Well, I mean, it's been gone a couple of years now, but he'd been he'd been doing it for a while prior to that I'd say in I mean, this was you know, still in the 2000s Yeah, 2010 around I would imagine he started and but I just his life, like it started off like I'm working, but I'm getting dialysis and then slowly went to I can't go to work anymore. And then it's like, I just felt like it was going to dialysis and recovering from now.

Ragnar 45:10
Yes, because like, at least with with diabetes, you can eat anything you want pretty much, you know, on dialysis, you got to really careful what salt, potassium we have with phosphorus, you have to take a phosphate binders, you got all this other stuff to do. So with diabetes and dialysis, it is quite a burden. But you got to what I did, when it was successful with it, because I just kind of broke it down to like you, you know, we learn here how to like diabetes that has a certain set of rules that you have to kind of follow. And so to dialysis, you have to certain you know, because if you don't pay attention, you'll pay with tension. So I'd rather pay attention and I did the best I don't I'm not perfect, you know, I'd mess up on my dialysis treatments or my treatments, but on my care, no diabetes care still kind of mess up, you know?

Scott Benner 45:55
No, yeah. I just sitting here thinking about Mike, he wasn't. He didn't. He wasn't graded as diabetes. Like I don't think it was effort. I just don't think he used old insulin way too long. When they tried to get him to Novolog. He was just out of his depth. He didn't have any sensor technology. I tried to talk to him about it, but he did not like he did not like talking about his diabetes. And he just he struggled every which way. But you know, it was I'm not even sure what Yeah, yeah, it was frustrating that, yeah, that he, you know, he had a problem his you know, different than yours, his problem led to his need for kidney, you know, from dialysis. And still, as he's getting the dialysis, he still doesn't know, like, nobody ever stopped to teach them about diabetes.

Ragnar 46:46
That's terrible to me, like, you know, this is, you know, like, like, you know, thank God for the doctors and nurses, clinicians, but sometimes they forget that you're actually dealing with this every on a daily basis. And you need to know the information properly to be able to help you help you control this kind of uncontrollable, but you help you control it. So. And, you know, and I don't know, I haven't talked to anybody that has diabetes from a dialysis from diabetes ever, really. But I would imagine that it's pretty depressing, because you get, like, diabetes can take care of that. And I'm on dialysis. And then it's kind of a downward spiral, you know,

Scott Benner 47:22
well, what I always imagined too, was that his lack of knowledge caused it and he's aware he doesn't do a good job with this diabetes. And now it's like, you're bailing out a boat with a thimble. And, you know, on the other side of it, you're still you know, better with your insulin than you were before. So, you know, and then from there, I mean, I don't know if you know, through our conversations he never mentioned that is his heart. And right and that in the end is what failed.

Ragnar 47:50
Yeah, so that's probably from the dialysis more than not the kidney stuff because you all your, your salt, potassium, and all your other stuff gets messed up. So really, and then all of them with the diabetes shoe with a high blood sugars and you know, like you always mentioned about the razors going through your veins, you know, so yeah,

Scott Benner 48:06
those two things together or not? Yeah, not a great couple, huh?

Ragnar 48:10
Yeah, I had a really good friend of mine who had kidney pancreas transplant and she was diabetic for a long time. And she after a year and a half of her kidney, pancreas transplant, she had a massive heart attack and passed away. So you know, and she took care of her diabetes, so who knows? You know?

Scott Benner 48:30
Yeah, it's not great. So but anyway, sorry, I don't know I'm not gonna talk about Mike It messes me up.

Ragnar 48:40
Yeah, no, no, that's okay. I understand that that's you know, I totally get that yeah, a friend of yours you know,

Scott Benner 48:46
yeah. Let me ask you this then. So when do you like your your looping now? How long have you been doing that?

Ragnar 48:53
I've been doing it God like to see before the pandemic so that was my my own pause I think one of the one of the looping come out I came out like a came out like six months to a year after that maybe like 2019 Maybe 2018

Scott Benner 49:11
That's a good question because I don't know.

Ragnar 49:13
I don't know. I can't remember as it's been long enough now that I've been doing it for a long time. Like it still drives me I still don't have I still try to get things dialed in I just it's it's you know as long as I can this other doctor I have a private doctor I pay for he's diabetic as well. And he was somebody with us older diabetics is that we try to out think the technology because our whole life with technology diabetes, always had to out think the technology to try to make it better. So when you try to do a loop, you get in trouble. Yeah.

Scott Benner 49:47
I know. Yeah. I I'm looking here I'm seeing I'm seeing YouTube videos from Katy in 2018. And I'm cooking Yeah, I do. And then there's Here's an article from 2016.

Ragnar 50:05
Yeah, so I had to be like 2019. I think 20, like late 2018 or 2019, because what happened was that I had, I know, so it's probably 2019 Because 2018 My analysts pumped, I couldn't read the screen anymore. So I needed to get new insulin pump. So I tried to keep that thing as long as that, of course. So then I said, I told my doctor, I want to do this looping thing that we had to buy the old pump. So it's before the, the loop came out before the Omnipod came out with loops. And so my doctor said, Oh, don't do that. So I tried to the 670 G Medtronic, which drove me nuts. I mean, I was able to run a half marathon. I eventually figured it out. But it was just oversold to me. So I got frustrated because I had the Dexcom for so long. So I finally went back to using Dexcom and making a trying to have just a pump. Okay. And then I got the loop, which was, which was amazing to me. So

Scott Benner 50:59
yeah, this this article from 2016 is from Dana Lewis. And she was on the show, and her and her husband was on years ago, like around that time. And this was open aps that they were dealing. Yeah, they were done. I didn't do that. Yeah. Wow. That's really, really something that just I mean, even that's been, I mean, what is that? 2016 from damos? thing? 17? Yeah. I mean, you know, we're already seven or eight years into it. Unbelievable. Yeah. Hitting. And so you found it pretty quickly.

Ragnar 51:29
Yeah, I mean, I've always been up on because I've worked for medical device industry for so long for pacemakers and defibrillators, and all that kind of stuff. I've really believed in medical technology. So I've always tried to be really on top of what the newest diabetes thing was. So one thing that I had the Ultralight I never went to a pump. And probably should have that earlier, but I never did. So I was trying, being kind. Because what, you know, you got to be open to the new technology, because it's it's works. I think, you know,

Scott Benner 51:58
yeah, no, I agree. So, what have your outcomes been? Like? Like, what were they? Like going through your life? What do you remember, you're a one sees being as you were growing up?

Ragnar 52:08
I don't remember my agencies growing up, I used to be asked my blood sugar and my doctor and use different pens and pencils for the logbook puts for blood sugars, and you know, and I think he knew was going on. He was pretty smart guy. So

Scott Benner 52:22
brakes. Are you saying that you were you would switch your writing implement to make it look like you are honestly keeping the

Ragnar 52:28
book? Yeah. Oh, yeah, of course.

Scott Benner 52:31
Can't just use the same pen. You'll know. I did it all on the same afternoon. Exactly, you know, but so he saw he sees your log book, but he sees your test results as well.

Ragnar 52:41
Yeah, he'll say you got to do a better, but I think it was like, when I was younger, hard to say I don't even know when the agency started coming out. So but as a teenager, and through high school, I was trying but we still weren't know are doing. But when I started the ultra lanteria that everyone sees us probably like, started the age that came down like sevens like mid set, I was probably mostly mid sevens, eights the whole time there for a while. And then the tankers transplant. So that was good. And then the loop has been has been I've been my last one was 5.0. But I don't know if I believe that too much. Because my Dexcom says I was like one like 6.2. So I kind of believe the 6.2 more than the five point on for some reason. Because it with it with kidney transplant. If you have it, you usually have anemia. So when you have anemia, make sure your anyone sees a lot lower.

Scott Benner 53:32
Well, I have a little blurb here from you from the NIH. Yeah. the ADEA has now acknowledged oh my god glyco hemoglobin a one C as the diagnostic criterion for diabetes mellitus. For the first time since the publication of the ADA is guidelines in 97. And this article was written in. Yeah, okay. Yeah, so looks like maybe 1997. And then 2012 looks like when they await the American diabetes Association guidelines. First diagnostic Collins July of 1997. Thus, the current revised criteria for diabetes diagnosis and screening as of January 2010, are, oh, this is this is you know, how they move the needle all the time on where your agency should be, you know, every year they're like, well, maybe it shouldn't be here. Maybe it should be. You know, it's funny. Yeah.

Ragnar 54:26
Well, I don't get like from your, your, once you've heard about people that have had that pregnancies in our agencies are like five to 5.2 or whatever. And then they leave their pregnancy and the Oh, you can bet you're fighting back to seven and seven and a half and like, Well, five is good. Why not keep it there? I don't know. I don't want never

Scott Benner 54:42
using this as a you know. So the I think what happened was and I have no idea, but what it seems like to me is that as technology gets better, and the possibility for people to take care of themselves gets easier and more widespread. Then they move down to the top the target, but what ends up happening is the immediate person in their 40s just like look, man he wants he's seven and a half. It's right when my doctor wants it. I'm like, Yeah, that's from a conversation you had with him 15 years ago. Yeah. You know, and, and he's like, Oh, are you now? Like he doesn't he doesn't, for some reason come back to you and say, hey, look, the guidelines of move, go for seven, go for six and a half like that. It's interesting. Everybody kind of gets stuck somewhere, wherever they start, maybe or wherever they get comfortable. I don't know. But yeah, you know, there'll be a day when the ADA says your, you know, your guidelines, or, you know, you're looking for 5.5 or something like that. Yeah. So, you know, but to your point, the pregnancy thing is always fascinating. That like, you cannot make a baby with an A one see of blah, blah, blah, get it to this. And then the baby comes out. They're like, all right, relax. Back to where you were, it's all fine. You know, fine. Yeah. A lot of a lot of it's just, I mean, a lot of it's just based on on human nature, honestly. Yeah. And what, what we know people are willing or capable of doing, I guess, depending on who you are. Yeah. Anyway. So. I mean, what would you what would you tell people about a transplant? Like, would you say go for it?

Ragnar 56:22
Yeah, if you can get to me I've had, I mean, I had so after my kidney, pancreas transplant, my cousin gave me a kidney on the last day of the week. So then I waited another. Yeah, someone lasted a week now. Yeah. Someone always waited tenure. And in 2019, yeah, 2019. I got it. I got a kidney transplant from a donor in New York. And that one failed in. So no pandemic, my friend went hiking yourself. And then I came back. And I could tell I wasn't doing well, I was really tired. So I went in my kidney was failing. So I had to go into the hospital. And like July of 2020, I'm like, this is, you know, fun. So I did that had a biopsy. They said, Oh, it's, you know, it's not working. Right. But it's not rejecting. So, you know. So then this one failed, actually, last December. And December 2029, December 2021. And then, and so on to 2222. I got the call for a new kidney transplant, the one I have now who 22 year old kid in Santa Cruz. So this one is really was working very well. So I'm pretty excited about that. How

Scott Benner 57:32
a couple of questions. What's the longest time you went without a functioning kidney? 10 years? It's you 10 years dialysis? Yeah, one, how, what's the process of getting on the donor list.

Ragnar 57:47
So that so you have to couple of things. One is you have to, you know, go to see your nephrologist, to transplant doctors, and they have to help you put you on the list. If you're on dialysis, you get on the list, you have a little quicker. But if you can use failing, that puts you on the list. So there's a whole process of paperwork, I don't know, they have to do a whole thing you get when you're on dialysis, you get Medicare insurance. So if you have private insurance, you also get Medicare insurance. You can think Nixon did that actually. And then then after that, you have to make sure that you are, you know, doing your dialysis treatments properly. Like you're being compliant with your dialysis treatments, with your diet with your medications, everything has to be really compliant with everything. If you're overweight, you have to lose weight, we have to be really compliant and show that you're willing to take care of, if you can't take care of we know Dallas can to get a transit, they won't think you can take care of the transplant. So you have to show that you're able to do that. I see. And that's kind of the biggest thing I think, and and you know, and so, now transplants have become, you know, when I first had my first one, I think I was in the hospital, like three weeks to a month, whatever. And this last time I was in the hospital for a week, you know, so it's really, things like like with diabetes managers really changed a lot than the drugs are much stronger. suppress your immune system. You have and sometimes

Scott Benner 59:10
I was gonna say, do you get sick because of that? Or what did COVID freak you out? Or

Ragnar 59:15
COVID really freaked me out because I had a transplant so sick, you transplant immunosuppressive drugs. So you know, I'd get a sniffle or a sore throat or you know, we live in town. We live by the beach and like, oh god have COVID You know, do you know? And everything else was fine and have a fever or anything like that. So that was kind of nerve racking for me. Not so much now. Now. I'm a little more you know, there's there you have a mask, you have vaccines, you have treatment. There's the whole slew of things compared to when we first started then. Yeah, I used to listen to you during that whole time was this year doing like two or three Shows a week, whatever it was, I was listening to every every time

Scott Benner 59:51
thank you. I appreciate that. Yeah. What about longevity? Like how? What are your expectations? The doctors talk to you about like, why

Ragnar 1:00:03
not? And that no, I hope they'll be, you know, in my 80s 90s. That's what I hope. Yeah, take care of myself. Both a transplant longevity is for instance, they, you know, most of them lasts about a year. And then after that, you know, certain amount percentages kind of go go lower as you get longer out. But you didn't get the five years and you're the so the first most important years the first year. And then the next milestone is five years, not if that's 10 years, and then 15. So, so it they can last, you know, I've had them last for two, you know, like, whatever, 14 years and I'll one lasted a week. So just has to do with your immune system more than anything. And you have to be compliant to your drugs. Do you have to take your medication?

Scott Benner 1:00:45
Right? What about psychologically, is there a difference between receiving a donor from like a live donor who, you know, versus I'm assuming somebody who's passed away sadly,

Ragnar 1:00:59
yes, definitely. Because my cousin Eric gave me a kidney. You know, and it was all excited. And so the month before mchunu, certainly went to Hawaii for like, three weeks. And I came back and got the transplant from my cousin. And I only lasted a week. And so we were both just devastated. I was just I took his, you know, he gratefully gave me his kidney and the kidney didn't take. So I felt that he felt that we both thought was our fault that the thing didn't work out. Yeah, that was just science. It was had nothing to do with that. But it is, once we get a categoric transplant or someone who has passed, there's no person has already passed away. So there's no to me, there's no it's easier to deal with, personally with psychologically with that, because my cousin now only has one kidney. So I'm only worried about him losing his kidney going on dialysis, like a K or picking a water, you know, blah, blah, blah. Yeah. So that's, that's kind of an important. Yeah, that's definitely different. For me. That's the the thing is the living donors lasts longer. So my dad gave me kidney, for instance, you know, and he's been, he was 21. And he was 51. So it's been 31 years ago, 31 years, and he's doing fine. You know?

Scott Benner 1:02:09
Does your cousin get better gifts at the holidays than other people in your family?

Ragnar 1:02:13
I don't know. I don't think so.

Scott Benner 1:02:14
I mean, from you, I met from you. Oh, yeah. Yeah, of course. What's that? What's that like to approach a person and ask for that?

Ragnar 1:02:27
Well, you know, cuz you always tell people you need a transplant. A lot of people say, oh, yeah, but then rubber hits the road, and it doesn't really happen. But you put it out there. And you know, you hope for the best. And it's asking drum like, what my dad, my, my father helped me. Like, he would ask the family, you know, hey, listen, when you're writing a kidney, and then I would talk to that person. And, you know, you're okay with it. It's it. You got to be okay with if the person says no, or if they say just change their mind at the last minute. You have to be okay with that. It's It's okay. It's their decision, you know. So, but it is a little bizarre, you know,

Scott Benner 1:03:06
but I mean, if Mike if it was my kids, I think I can I imagine I'd be okay with that. Another, I'll say, I don't know. I don't know what I would say if another person asked me. Yeah, you know, it really would be an incredibly difficult thing to think through. Yeah. Yeah. That's, well, it's it's a kindness. Really, anybody who's done something like that for somebody?

Ragnar 1:03:29
Yeah. Really? Yeah. It's, it's unbelievable, you know? And I've had, you know, I put when I used to do my my runs my 10, k's and my half marathons and stuff, I'd work thinking says, I need a kidney transplant. I said, I needed a kidney. I put my phone number on it never got a call from that, but I always hope I would.

Scott Benner 1:03:45
I'll tell you what, that'd be amazing. So it's like that guy in a T shirt needs a kidney out?

Ragnar 1:03:51
Yeah, yeah. So

Scott Benner 1:03:54
listen, we sold something on a Christmas card one year. So I don't think I've ever told this story. I'll give it to you really, really quickly. We bought this when we bought our first home. It was this little crappy house. Yeah, on a really nice piece of property. And it was always our intention to just knock the house over and build back in that space. So we finally got into a situation where we could have I'm saying afford but we you know, it's not like we paid cash. We took out loans, right. But we could make it happen, right? We actually could were able to borrow the money to build the house, but we couldn't afford anything extra. And so we didn't know where to live. While this was happening, and it was going to stymie us we were going to like end up not building the house because we had nowhere to go. We had two kids at that point and a dog and there was you know, all of us. And one day I called my wife at work and I said I think I know what we can do to build the house. And she goes what I said we can buy a travel trailer and have it put on the property and we can live in the trailer while the house is being built. And just like you're out of your mind, and I'm like, that's the only way we're getting this done. Because even renting like a condo locally was insane. You know what I mean? Like, that wasn't gonna work. And we couldn't, we don't live near family, a reasonable distance the kids were in school, etc. So we did this, we bought this, like, I forget how big it was, it was huge. And it had like, slid out on the side. But the payments on it, were only like $89 a month. So you get it delivered. You hook it up to the sewer and the water. The township says it's okay. We, you know, talk about it with our neighbors. And we're like, look, we're sorry about this, but we're going to live in a trailer in our backyard for about six months. And, but then as soon as you're done with it, and the house is finished, we don't want this trailer. Right. And I don't know how to get rid of it. So it was the holidays, and we took a photo of it. I did. I cannot blame Kelly for this, although then I get all the credit because it worked. So I took a photo of it and we put it on the front of our Christmas card. And the front of our Christmas card said for sale. And then it had all the information about the trailer inside said serious inquiries only Merry Christmas. And we sent it out to everyone and Kelly's cousin's wife's parents bought our trailer. Wow. So great. So I'm saying I probably would have put the phone number on the T shirts. Yeah. Like it's worth a shot with the shot. Exactly. I so thrilled to get rid of that trailer. Not as happy as you would have been to get a kidney. But you know what I mean?

Ragnar 1:06:31
Yeah, I got, ya know, it was a weight. So

Scott Benner 1:06:36
it was like it was, well, first of all, we were paying for it. A second of all, we have anywhere to put it. So like our neighbors were like, Okay, so the house is done. What do you do with that? I'm like, don't worry. Don't worry, I have a plan that involves my holiday card. It's gonna be fun. I still can't believe that word rags actually. That's great. Oh, my God. Yeah. Well, is there anything that we haven't talked about that you wanted to?

Ragnar 1:07:05
I just wanted to say one thing I wanted to say was that, you know, sometimes you have diabetes to me as a condition moreso than a disease because it's hard to deal with it. But sometimes you have other diseases or conditions. This that wasn't caused by your diabetes, it's just another disease you have, you know, so it's not the diabetes fault or your fault or something. I just wanted to say that, you know, sometimes people have other stuff that has nothing to do with the diabetes. It's just, you know, Luck of the luck of the draw. Yeah, you know, I mean, I guess did a Lago like, five years ago was like, really? Okay. You know,

Scott Benner 1:07:43
hey, great. This is great. Yeah,

Ragnar 1:07:46
this is great. Yeah, super. Yeah, nothing get rid of it. Yeah. And I don't know, it just, yeah, just I think diabetes is it's a life, you know, life. Not lifelong. But, you know, whatever we have to do, we have to do it and you have to be positive, try to be positive about it. It gets big, you know, we all go through our ups and downs with the condition but it's it's a it's a process it's part of the journey, not you know, the end result. Of course, it happened great blood sugars. But if you sometimes have had a normal range, blood sugar, the like yesterday, I'm running out of pods, right. So I have one, I have two pods left. And then of course, the insurance is backed up. So yesterday, my my, my sugars are like, like 190, even 202 20. And I'm like, can't keep going to use of insulin and bring it down. But I don't want to lose the particular one pot left. So that kind of stuff happens. You know, we're Yeah, or you know what?

Scott Benner 1:08:45
You're saying a lot here but you're not saying what you mean. I don't think so. What is your what do you what's your message?

Ragnar 1:08:52
Oh, my message with with diabetes is is take it takes it, take it as it comes in. Don't try to live in the results too much. If you have a budget of 300 like Arden did it yesterday without a day. That's just the number it's not a reflection on who you are. So

Scott Benner 1:09:07
you got to fix it and move on. You can't you can't look backwards and and beat yourself up. That's not That's not okay. You know, you're gonna you're gonna end up causing yourself more problems that way. Yeah, yeah. No, I You said something earlier to like, it slipped my mind. But it was akin to when I tell people, like do a little work now to save a lot of work later. Yeah. And something about tension. Would you say what did you say?

Ragnar 1:09:32
Oh, yeah, say yeah, my dad told me some of this if you don't pay attention, you'll pay with tension.

Scott Benner 1:09:38
Now he's it's brilliant. But it's it's simple and it's brilliant at the same time, just I all I wanted to tell art and yesterday was if you just take five minutes now you're going to save the whole day. And she you know, in her mind, she was busy or in class or doing something she didn't have that time. So I but I'm not going to hit her with But now like, I'll wait until she's home, and we're talking and I'll bring it up and I'll be like, Hey, here's a great example of, because that's a lesson she needs. She really has to learn is exactly. It's the lesson your dad was telling you. So yeah, exactly.

Ragnar 1:10:14
And took me a long time to learn that lesson school of hard knocks, you know, so

Scott Benner 1:10:18
yeah, all right. No, I wish it was easier for people to learn.

Ragnar 1:10:21
Yeah, and you know, and then, you know, thank God for the technology to be able to, you know, I'm getting low, please.

Scott Benner 1:10:29
If this was 2020 years ago, Arden wouldn't know what our blood sugar was. Yeah. You know, like she wouldn't if she felt okay. She wouldn't have tested while she was at school. Yeah, you know, so we know because of the technology. Yeah. Anyway,

Ragnar 1:10:42
I had one time I had instant reaction in class, that back in college, but whatever. It was fun. panics aren't paramedics around me. I was like, Oh,

Scott Benner 1:10:52
my God. Yeah. Everything that I've done, right is trying to set Arden up to not be the kid who passed out of college. So yeah,

Ragnar 1:10:59
yeah. Well, she's she's done pretty well in Illinois. Right. She's in Chicago.

Scott Benner 1:11:03
Are you being funny? Yes. Yes. In Chicago doing great.

Ragnar 1:11:07
Yeah. Getting ready for the winter. Yeah. So one more thing. I am looking for a job. So any medical device companies out there, you can give me a call? Oh, no kidding. What kind of work do you do? I used to sell cardiac pacemakers, defibrillators, but I like I'm a medical sales rep. So

Scott Benner 1:11:22
alright, well, I'll tell you what, I don't know when this is going up. But that, hey, if somebody hears it, contact me, and I'll move you on to rice. Thank you. Appreciate that. salutely Thank you for doing this. And I really do appreciate it.

Ragnar 1:11:35
All right. Thanks a lot, Scott. Appreciate it.

Scott Benner 1:11:43
I have a note from rags that I'll read at the end. But first, let me thank Dexcom, makers of the Dexcom G seven continuous glucose monitor, and remind you to go to dexcom.com forward slash juice box to learn more and get started. I'm also going to thank contour makers of the contour next gen blood glucose meter, you can use the same brand of meter that Arden does by going to contour next one.com forward slash juicebox. Those Second Chance test strips you don't want to miss out on them. Don't forget to check out the private Facebook group Juicebox Podcast type one diabetes, and all the great series within the podcast which you can find at juicebox podcast.com. We're in the feature tab of the private Facebook group. So reg sent me this great email kind of updating me on everything. And he was worried that I'm going to use his words. I'm worried I made kidney disease sound easy and nonchalant. Which the opposite is true. Basically, he just doesn't want anybody to think that this stuff is simple, or that he was trying to make it sound easy because he said that is not the case. Anyway, rags I thought you were terrific. I love this episode, and I appreciate you being concerned for everybody else, but I believe the honesty of your story came through. Alright everybody, thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

#946 Best of Juicebox: Diabetes Variables: Alcohol

Originally aired on Dec 17, 2021. Diabetes Variables: Alcohol

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

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends and welcome to episode 946 of the Juicebox Podcast

I thought for the Fourth of July we would run a best of episode about alcohol. Don't ask me why just seemed like you know the right thing to do. Today's episode features Jenny Smith and I in a diabetes variables episode, Episode 596 originally aired on December 17 2021. It talks about alcohol and its impact on your type one diabetes care. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. If you want to check out Jenny, you can hire her at integrated diabetes.com. And if you want to check out the entire bold beginning series, it's available at juicebox podcast.com. Go to the menu at the top click on bold beginnings, you'll see all the episodes there. It's available in your podcast player, any audio app you're listening. And if you're looking for another list, but you don't want to go to the website, you can go to the feature tab in the private Facebook group Juicebox Podcast type one diabetes

this episode is ad free. But please remember to use the links if you have the need. They're in the audio app you're listening in right now in the show notes. Those links are also at juicebox podcast.com. Or you can type them into any browser. I appreciate you thinking about the podcast when you're making purchases when you support the podcast by using the links if you're keeping the podcast free and plentiful. And here's a couple of quick savings for you. If you'd like to start drinking ag one in the morning like I do drink ag one.com forward slash juice box the first time you buy at one with my link you'll get five free travel packs, and a year supply of vitamin D. And if you like comfort, comfort in your sheets, your towels and your clothing. Check out cozy earth.com If you find something you like put it in your cart. And when you're checking out use the offer code juice box to save 35% off your entire order not just one item, your entire order. Alright, check out this episode and please do not blow your fingers off. Happy Fourth. Hello friends and welcome to episode 596 of the Juicebox Podcast. Oh

so this is it. This is the last episode of the diabetes variable series with me and Jenny Smith. And today's topic is alcohol to see how I've timed that to coincide with New Year's. Hmm, that's right, I'm thinking. 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 are becoming bold with insulin. Today I'll be speaking with Jenny Smith. Jenny has had type one diabetes since she was a child for over 30 years. She also holds a bachelor's degree in Human Nutrition and biology from the University of Wisconsin. She is a registered and licensed dietitian, a certified diabetes educator and certified trainer on most makes and models of insulin pumps and continuous glucose monitors. She's also Jenny from the Juicebox Podcast so come proper I really hope you've enjoyed the variable series if in the future Jenny and I think up other ones will add them but if not, they're always there for your needs and enjoyment.

This show is sponsored today by the glucagon that my daughter carries. G voc hypo pen. Find out more at G voc glucagon.com forward slash juicebox. Jenny This is the last variable we're going to record. Oh, we've done it. It's very exciting.

Jennifer Smith, CDE 4:28
That is very exciting. A whole year of recordings are variable that's that's a lot of variables.

Scott Benner 4:32
I'm not kidding about it. At one point I looked at the list and I was like why did I like this is not a good idea. But it ended up being great and I really did enjoy it you obviously brought a ton to it. So last one alcohol How was alcohol a variable for for using insulin.

Jennifer Smith, CDE 4:52
but alcohol is a variable because alcohol can lower your body's ability tea to respond to the typical turnaround hormones that would raise blood sugar, you know, if you have a low, and so alcohol in and of itself, and we're talking like, several drinks, or even just one drink, depending on how your body tolerates alcohol. And many people I think are kind of confused what to do about alcohol because they feel like, well, if they're drinking, like, a hard liquor, for example, really doesn't have carbohydrates in it. Right? So you may not be bolusing for it, and you should, you know, not not necessarily unless it's mixed with like cranberry juice or orange juice or something like that, right. But other types of alcohol such as beer, have a fair amount of alcohol to them. carbs, or sorry, yeah, the alcohol carbs. Yes, thank you. I was thinking alcohol, alcohol. Yes. So there's, you know, I mean, anywhere between 12 to maybe like 22 grams, depending on the size of the bottle or the can or whatever you're drinking, really? So do you cover the carbs? And then what happens later, right? Do you take insulin to cover the bottle of beer that you're drinking? Do you not what happens most people who don't cover the carbs initially will have a higher blood sugar.

Scott Benner 6:19
So is the concern around bolusing for carbs that are an alcohol that at some point, you become a knee braided and are not the best shepherd of your blood sugar, if it gets low?

Jennifer Smith, CDE 6:29
Those are the good questions to always be thinking about. Yes. Because in terms of low from alcohol, low from alcohol is a delayed low, it will tend to happen later on. So our typical recommendation on a normal conventional pump, it's a little more a little more, I guess, difficult if you're doing injections, but on a pump, it would usually say at the end of the night, let's say you've had several drinks over the course of the evening, it's midnight you get home at that point, you want to really decrease your Basal insulin delivery, because that's when alcohol is likely to come into the picture in terms of hitting you and causing you to go low.

Scott Benner 7:17
And is that the actual alcohol that's bringing you down? Or is that your? Or is it the Bolus that you used? Or no, if even if you didn't Bolus you would get low afterwards.

Jennifer Smith, CDE 7:28
It shouldn't really be the Bolus. I mean, again, bolusing has a definite like end point of action, right? Let's call it four hours, just give or take three to five hours, four hours. So if you last Bolus at 10 o'clock, you're low at 2am. Sure, it could have something to do with some of that Bolus still being left in the system. But it could also have to do with the way that the liver turns around and deals with, let's call alcohol a toxin, right. So as the liver is dealing with turning that alcohol around and getting rid of it in the body, your liver is also not putting out the typical turnaround for drop in blood sugar, right? You don't have that counterregulatory hormone production, so that your body has some glucose drip coming out of it saved stores to help you. So in that we usually say for every alcoholic beverage consumed, we really want to take the Basal rate down by a certain percent for about two hours per beverage consumed. Okay, so if you had three beverages at the end of the night, the percent that we would take it down would be by 40% of a decrease. And then the timeframe to decrease would be about two hours per beverage.

Scott Benner 8:45
Okay, so So you're basically people might not recognize that your liver is making glucose and you know and giving it is giving it off like Luca is it glucagon or glycogen or I forget the word,

Jennifer Smith, CDE 9:00
right? I mean, your body's counterregulatory hormones essentially coming from the liver or helping your body to essentially put out in the turret in terms of a low or a drop like that. It's helping your body to put out the glucose, right? I mean, that's why we have glucagon kits, right glucagon kit is a really quick turnaround of telling your body to spit out the glycogen and to turn it around into glucose to sort of bring you up from the low

Scott Benner 9:28
but if you're if you're taxing your body with enough alcohol, the liver gets focused on that. And then as your blood sugar gets low, it doesn't go through that process. In the same

Jennifer Smith, CDE 9:39
way, it doesn't go through that big process of counterregulatory. But also remember the reason that we're taking Basal insulin is to counter the production and natural drip drip of glucose into our system to begin with. So if the liver is busy taking care of alcohol, it's no longer going to help with that normal drip drip drip of glucose. Industrial Basal is going to be too heavy for you. Okay. In layman's terms, right? I mean,

Scott Benner 10:06
listen, I'm it's not a it's not a deep dive into how the liver works. But it is something I don't think people think about for certain,

Jennifer Smith, CDE 10:13
you know, and I think it's something that often isn't even brought up like I, I try really hard with a lot of the teens and those heading off to college that I work with, I try to bring up alcohol at some point, because it will come into the picture. Yeah, I mean, unless you're unless your kid has really sworn off because they just don't have any interest in that. At some point, alcohol will be something they need to think about. And it's really important that they know better how to adjust if needed, than just say, Well, I'm never going to do it.

Scott Benner 10:48
Right. Okay. Does this. Does this need a bigger episode? Or? What do you think?

Jennifer Smith, CDE 10:56
Come on. What do you have more? More questions?

Scott Benner 10:59
No, I just I don't know if it's, I don't know. I mean, it's like, you know, if you're, if it's beer, beer has carbs. If you're drinking, you know, some harder liquor, there's no carbs in them. But you have to look and see if you're going to add fruit juice just seems like maybe I could understand that when I start. But what happens when I'm like three drinks into it? Like, where do I? You know, what do I do when the when the room starts spinning? You know what I mean?

Jennifer Smith, CDE 11:22
Right? I mean, the big things with alcohol, too, that we always recommend is definitely have something to eat with it. Right? So it's not just alcohol. I mean, you probably know that. Or maybe you don't, I don't know, whether you drink or not. But if you don't, if you drink something on a pretty empty stomach, the impact of that alcohol is faster, right? You will feel the impact. Versus if you have it with a meal or at the end of the meal. Are you drinking along with the meal? It's much of a dumbed down. Impact. Yeah, which meal so then if you were expecting the impact of alcohol may lead you to drink more, because

Scott Benner 11:59
I'm also that there might be people who are wanting to get to that spot, too. It's a really difficult thing to talk about, because you're talking about it from the perspective of how do I do this responsibly? And I don't know that everybody starts an evening of drinking with that in mind to begin with, right?

Jennifer Smith, CDE 12:18
Correct. And you also have to consider like, I much feel like if, and I've only been drunk a handful of times, I'm not a drinker. I I'm, in fact, I came, I think the last time I was drunk was probably at my brother's wedding in Aruba. And that was a long time ago. And it was a lot of fun. But feeling drunk, feels very similar to a low blood sugar. Okay, those tip sees types of and maybe that's not a symptom of yours, but I very much have a similar feeling with alcohol as well as with a low blood sugar. Yeah. So then comes into the equation, you're also already not really thinking very well, because you have alcohol on board. Is your symptom of being drunk? Also a symptom of a low that you're not paying attention to?

Scott Benner 13:15
Yeah. And how are you going to be able to handle that, um, so I'm just thinking of a person I met recently, whose son was away at college and was not a drinker, not a drinker, and then all of a sudden, one night just dove headfirst into it. And then this person had to, like, drive to a place to like, rescue the kid and take them to a hospital. Yes, you know, because then the next problem is, is that you're now around a bunch of drunk people, no one's going to be able to help you. Like, you know, you. It's not like you have a designated, what if my blood sugar gets low person here? You know, right,

Jennifer Smith, CDE 13:49
right. I mean, it's a reason in college that I 98% of the time, I offered to be the driver, when we would go out. And I might have knowing that we were going to be out for a fair number of hours, I might have like, half a beer when we got there. And then I had nothing else the rest of the night giving it a good like four hours of clearance time to be able to be like the driver hole.

Scott Benner 14:16
I can say with confidence that in my life, I haven't had the equivalent of a case of beer. Like I just don't drink for no reason that I can particularly point out to you other than it's not interesting to me. It's just not a preference. Yeah, it's not for me, I just I don't know, like I don't even know how you like consume that much. Like I have a bottle of like, flavored like peppy water here. And if I tried to drink this whole bottle, I'd be like, oh, like it can't really be too much. happens when you start putting like hops and barley into it. I'd be like, Oh, I'm so full. But yeah, but anyway, all right. I appreciate this. I know it's it's not an easy. It's not an easy conversation, because there's a lot of perspectives that that need to be taken into account. But I think in general, I mean, at least you could Try to follow what Jenny was saying about decreasing your basil. And, and, you know, I would add, you know, you gotta have I would want to have somebody there that understood my diabetes a little bit who wasn't drinking, but

Jennifer Smith, CDE 15:12
correct? Absolutely. And I mean even people ask even about wine, you know, a glass of wine, typical table wine is somewhere between three to five grams of carb, per you know, glass, should you cover that? I think a lot of it is also experience, right? What do you know about what has happened and along with what you said, make sure somebody is there who knows, you knows you have diabetes knows how to help you if you don't seem to be acting, the way that you normally would be acting. Because all of those things very much like all of the things with diabetes in general, take a little bit of experimentation. And you have to figure out what works the best for you.

Scott Benner 15:54
Let me let you I know you have to go. But let me ask you this, because I think I remember that this is true. When I'm drinking my glucagon won't work as well, right? That is right. Yeah. Okay. So if you're thinking doesn't matter, if I pass out, I'll just use my glucagon, it might not help. It will. I

Jennifer Smith, CDE 16:13
mean, will it turn things around versus nothing at all? Yeah, but it's not going to be the the same impact from what I recall. And I would I mean, it certainly would look it back up, but I'm quite certain nothing has changed about the recommendations and what we know about your glucagon kit and alcohol in the mix together.

Scott Benner 16:33
Yes. So read the label on your glucagon if you're expecting it to save you when you're, you're drunk, because it might not be as impactful as you're hoping. Okay. That somehow we made drinking sad, and I'm sure everybody oh

Jennifer Smith, CDE 16:51
well, people don't see us so they can't tell whether we're smiling or

Scott Benner 16:55
having a great time talking about I'm like, I just started thinking like we're taking the thing or people like oh, my, my Saturday night happy place. These guys are bumming me out. All right, well, thank you so much. G voc hypo pan has no visible needle, and is the first premixed autoinjector of glucagon for very low blood sugar in adults and kids with diabetes ages two and above. Not only is G voc hypo pen simple to administer, but it's simple to learn more about. All you have to do is go to G voc glucagon.com. Forward slash juicebox. G voc shouldn't be used in patients with insulinoma or pheochromocytoma. Visit G voc glucagon.com/risk. And the diabetes variable series began I guess technically at episode 231 with the pro tip called diabetes pro tip variables but then the variables proper began at 491 with trampoline followed by temperature travel exercise hydration, food quality leaky sites and tunneling video games stress masturbation school bedsides, growth hormone sleep pump site placement, a full moon diabetes tech weight change Walmart, the final episode sort of the last episode menopause and today's episode, alcohol. Check them out. They're all available in your podcast player. We're at juicebox podcast.com. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. And now I will sing the simple version of your Grand Old Flag for the Fourth of July. You're right Grand Old Flag Euro Hi Fi in flag you're forever in peace may you weigh in. You are the emblem of the lion that I love the home of the free and the brave. Every part beach true neath the red, white and blue where there's never a boast or brag. Sure Should old acquaintance be forgot. Keep your eye on the Grand Old Flag. Never had a lesson one take for those of you who don't live in America or hate us. I'm sorry about that. Actually, for those of you with ears, I'm sorry about that. Please don't unsubscribe. I'll be back very soon with another episode of The Juicebox Podcast.