#469 Week 19

Lisa discusses her son’s life with type 1 diabetes.

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

Scott Benner 0:00
Hello friends and welcome to Episode 469 of the Juicebox Podcast.

On today's show, Lisa is going to visit us all the way from Sweden and tell us a rather remarkable story about her son, who among other things, has type one diabetes.

While you're listening today, 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're here looking for the diabetes pro tip episodes, they begin at Episode 210 and are also listed at Juicebox Podcast comm you just go to the top and click on diabetes pro tip or you can go to diabetes pro tip.com. But I wouldn't do that until after you hear this conversation with Lisa, because I think you're going to love it.

This episode of The Juicebox Podcast is sponsored today by the Omnipod tubeless insulin pump. By the Dexcom g six continuous glucose monitor and touched by type one you can find touched by type one on Facebook or Instagram were touched by type one.org. You can learn more about the possibility of a free 30 day trial of the Omni pod dash tubeless insulin pump at Omni pod comm forward slash juice box. And you can get started today with the Dexcom g six continuous glucose monitor@dexcom.com forward slash juicebox. There are links in the show notes of your podcast player and links at Juicebox podcast.com.

Lisa 2:16
My name is Lisa and I live in Sweden. And I probably don't sound so Swedish. And that's because I was raised in Northern California.

Scott Benner 2:25
I was gonna say your middle name, which I'm assuming is your maiden name. Is that is that your is?

Unknown Speaker 2:31
Oh, that's that's a long story.

Unknown Speaker 2:34
Like we don't have time for that, buddy.

Lisa 2:37
We don't have time for that one. But you're correct. My my. My second name is the name in Sweden, right? My Swedish married name correct. And I am I've lived in Sweden since 1988. I came here with a tech company and I have two boys and a husband and boy dogs. So maybe four boys and I am the mother to a 15 year old who was diagnosed with Type One Diabetes 11 months ago.

Scott Benner 3:09
Okay, so within this year, correct, gotcha. Okay, so within a calendar year, your 15 year old was diagnosed. Was that out of the blue? is there other? It was okay. You've I have some background here on you, which I you know, I'm just happy to tell people that I'm looking at and I think we should probably just pick slowly through everything I'm seeing here is your type one's life. Right? Correct. Okay, so did the issues begin? Before he was even born? How did that? Yes.

Lisa 3:44
So the second ultrasound week 19 showed a fluid filled cysts in the abdomen of the baby I was carrying. And so that's when it all started was week 19 of the pregnancy and it was some quite severe damage to the intestinal area, primarily the liver and the intestine. So they took him out early and did nine hours of surgery actually. The surgeons actually said they had to lay him on the table and call Japan to get some help so so he's kind of a miracle. And it's just kind of been a long story since then. I want to start off by saying he's a great joy and I call him my sunshine. He's very happy and great young, young person. But he has medical issues in his abdomen, so that would include liver intestines, and now even kidneys. He has we did some investigations. I didn't really know what was happening. And I did suspect maybe behavioral disorder autism spectrum, but it turned out to be a severe hearing loss and then also a mild to moderate cognitive disability, which the two together kind of mimic, he didn't hear what we were saying and didn't know what to do about it. And then some motors, motor impairment, and then 11 months ago with diabetes diagnosis from nowhere, do you. Okay,

Scott Benner 5:33
I have a couple of questions. Yeah. One of them's just gonna sound silly. And I don't mean to, but after the surgery, they don't put them back, right. You know, when you're making a cake, sometimes you need some work, and then you put it back in. But it wasn't like that, right? No, no. So he,

Lisa 5:52
they did they did this is arion, five weeks early. So we tried to manage it in utero. And I had really great medical care. Of course, again, I'm living in Sweden, and living near the capital of Stockholm, right outside, actually. And so really the highest quality medical universities and kind of in Northern Europe and maybe around the world, or 10 minutes from my house with both pediatric care and even like the diabetes care now and all the specialists and even when I was pregnant with him, so yeah, so I was really fortunate to live where I live, what's happening.

Scott Benner 6:35
So he, they perform this nine hour surgery, he's in an incubator for a while, I imagine.

Lisa 6:41
Um, yeah. He was in intensive care for a while. And then we that did the hospital for we came home to visit for the first time after about five weeks. And my father had come over from California to stay in our home with our older child who was turning four at the time.

Scott Benner 7:09
Gotcha. See, Lisa, if you're gonna know what I'm going to ask you before I asked you, then you can just get I get, I'm gonna go have breakfast.

Unknown Speaker 7:15
And you can tell me,

Scott Benner 7:16
I'm just getting ready to be like, How old were your other kids? And were they Yeah. But but so you lived in the hospital for weeks upon weeks? And then he came home eventually with you? Or you will when he's

Lisa 7:28
a kid? No, no, they never separate parents and children here, so and so we were put up there, they have parent apartments and in the Children's Hospital here, so we lived there. And we came home with him briefly for a visit just he was maybe five or six weeks after his birth, and then kind of back and forth. And then he got really sick at home. Another long story. Another long story, but he he got something called necrotizing enterocolitis. You guys call it neck NAC which is basically it can cause sepsis in the body. And so we had to go back in the hospital for quite a long time to try to see if he could repair that through not eating. So he was on IV foods for a while. So we were we were in and out with multiple surgeries and, and and attention for the first you know, year. And then he was Yeah, and then he was going blue at home. So I was given a mouth to mouth when we came home. So again, it's a lot of life and death early on. For us with him.

Scott Benner 8:43
Yeah, what is? Do you feel like you're a completely different person now than you were a year ago? Did you know so many things that you didn't know, prior? Like, how does it impact you? I guess.

Lisa 8:56
So I think that for me personally, you know, sometimes when you go through traumas, and you know heartbreaks and challenges in your life, or, you know, you you're impacted by them, and I had worked really hard to heal from some of those. I mean, I've had a lot of support through our medical system here with therapy. And I think when, when, when we get hit with the diabetes diagnosis, it sure didn't take much to crack the egg, if you know what I mean it I think I don't know whether I took it harder or easier than somebody who had never had a trauma before with a child. But we had gone through so much and we had worked so hard to you know, to get him healthy and to adjust our life and to give him all the tools and resources. I mean, even for the cognitive side and the hearing side and special schools and we really we're getting somewhere and then to have this hit us the last the last 11 has, I think in some ways tougher than the first time we went through the medical challenges? Well, you've listed a number of things, I think any of which, on their own would be

Scott Benner 10:14
a significant hill to climb, you know, and then there's just one on top of it. Other ones have another do each of these. And I'm assuming, like, each of these things, when they need attention from a physician, it's a, it's a separate visit somewhere, like is much of your time spent. Seeing doctors.

Lisa 10:35
Yeah, that's a really astute kind of understanding that you get that I don't think a lot of people do understand is that when you have so many very rare issues to deal with, and such a number of them, and there's no known profile, then yeah, they're there. Everything's pretty separate. I mean, and and what it does on top of it is that a lot it, it makes the responsibility for keeping it all together on me and on our family. So I'll give me an example. And I might be getting ahead of this. But we had for the first time ever, an infection at a pump site last week. And I, of course, who do you contact for an infection in the pump site, and I sort through all these Facebook groups and internet forums, and I think, okay, it's our primary doctor. So I contacted our primary family doctor, and and she said, Well, maybe you should contact the diabetes nursery or doctor, and then if they think it's okay, all right out the antibiotic. And then I remembered, oh, gosh, antibiotics deliver specialists, they don't want us to give them these three antibiotics. But this one's okay. And in the end, I had to take the responsibility to tell our doctor, I want you to write out the prescription and the weekends coming, it was actually just a few days ago. And if it gets worse, I'm going to give it to them. But if not, I'm not going to so a lot of the responsibility ends up being here at home with us. Yeah,

Scott Benner 12:12
I would imagine that each of these things is sort of like diabetes, in that they give you some information, and then you have to make on the fly adjustments with it. And I just was thinking about the, you know, I mean, we're trying to manage our way through things with Arden that are obviously not nearly as significant or severe as what you're talking about, in many cases here. But it's one doctor over here, you know, and one doctor over here, and then the third one in the middle, and they don't really talk to each other, they'll send like their notes to each other. But you know, I don't know what that means. Exactly. And then, you know, at some point, like they give you some kind of marching orders. And then the rest of it, it's inferred. It never gets said out loud. But it's always like, okay, you take care of this, figure out what you're seeing and report back to me. And then we'll take the next step, which which heartbreakingly is often not the step that gets you to where you want to be. It's, it's like, I don't know, it's like, you're absolutely in the dark, and someone throws a flashlight on the floor, and you're just feeling around one hand printed at a time trying to figure out where the flashlight is, and and then you find it, the batteries don't work is to

Lisa 13:26
figure out what's causing what's causing the symptom or what's causing this not to work the way it should work. And, and it's, it's like a medical mystery every day. And then, you know, you said something smart about, it might be like diabetes. And I would say that diabetes is today's management of diabetes and how we're managing diabetes with the CGM and the pump and the data and, and the knowledge. It's actually quite unique. I would say the other conditions that we deal with are maybe like how diabetes was managed. Before CGM. So we're kind of blind as to how is this medicine helping the health of his liver? Like I can't I can't track that every five minutes at home. So. So diabetes is somewhat unique with with what we have now.

Scott Benner 14:16
There's so many like user tools that don't exist with other issues. Yeah, right. Do you see a lot of ghosts meaning while you're trying to figure things out, you find yourself I find sometimes that I spend three, four or five weeks chasing down a thing and you get to the end, you're like, oh, that was nothing. And you're just like, Oh, my God. And then I do this. I here's something I end up doing, and I'll ask you about it. Sometimes I just reset for a minute. Me personally, I stopped thinking about it, even though we haven't found the answer. And then that makes me feel guilty.

Unknown Speaker 14:55
Yeah,

Lisa 14:56
yeah. I am so honored. On top of the diabetes management that I ended up in, in the cardiac intensive three weeks after his diagnosis, so I'm chasing, I thought I could control an uncontrollable disease because I was used to being able to control math. And I work in in medical technology products. And so I put myself in the hospital with no underlying cardiac conditions. So I, you know, at a pretty young age in pretty good shape and, and so now, what you say is, as I'm chasing what's going on, I am getting better right now is 11 months in, I am sometimes saying, screw it, I'm going to bed now. Like, I'm going to live with that value. For now, you know, I just like so I'm getting better kind of saying, you just also have to live through this.

Scott Benner 15:57
We say your special kind of type A, aren't you?

Lisa 16:01
When it comes to math? Yeah. I mean, when it comes when it comes to algorithms, and I mean, that's, that's my background. And so watching trends and seeing curves, and, you know, the sugar surfing protocols, and all those types of things. And that's really interesting to me if it wasn't my kid that's like, this is like my dream job is being an artificial pancreas.

Scott Benner 16:23
Yeah, until it's for your kids. And it's not my kid. Yeah. No, I You should hear me talk to people privately. I'm so loose. I'm just like, do that. Try this. Why don't you do that? Why just think that they're like, what I'm like, No, there's part of me, that's just trying to imply that you have to chill out a little bit, you know, because it just isn't going to come together as quickly as you want it to end when you get so tight. And I think to micro you know, with your vision, then you miss other things that are happening that are valuable, you're always kind of hitting yourself hard saying, Oh, I messed this up, or I didn't figure something out or something happened again, that went wrong. It's too much for a person to take. You really, you really can't do you can't sustain it. I mean, you didn't make it three months, it sounds like

Lisa 17:13
no three weeks, I ended up in the hospital three and a half weeks after the diagnosis. And it's called the takotsubo. It's a stress induced heart failure. So there's so many the adrenaline and the cortisone and they're called catecholamines. In the body, it was a surge of stress hormones, and it basically paralyzed my left ventricle. And it's a rare condition. And you know, typically it happens people that have been married for 60 years, and they're both on their deathbed holding each other hands and one passes away, and then the other passes away, like 10 minutes later, right? That's generally when a takotsubo happens. That's in general, when people get them,

Scott Benner 17:55
we start to tell people not to marry men from Sweden, is this.

Lisa 18:01
What I want to go back to you said about you telling people like, try this and try that. And I, I think that's really what made a difference for me, Scott, is I that that I want to go back to that because I want to tell you what your podcast and that attitude did for me. But before I do, so, do you think we start out like that, because the medical professionals scare us into not daring to take take testing. And to like, try out things? Do you? Have you thought about that? I mean,

Scott Benner 18:36
have I thought about it? I've thought about it a lot. I I find myself wondering if it isn't just the nature of people to want to follow a rule or to be on a team. You know, I'm team low carb I'm team you know, keto, I do vegan. I you know, we love the I pump pumping is very important. Oh, no. MDI, like, everyone's got it. They want to be on a team, right? Like having a jersey on makes you feel good, because then there's other people, and you're not alone, this whole thing. But then there's the rules. The rules are the rules. People want there to be rules. And if you really step back and really look at society in general, there aren't many rules beyond a couple, right? Like, you know, you don't treat people poorly, you don't kill people hurt people steal things. You know, that's pretty much it right? The rest of it's just common sense and calm. And when you think your life is moving the way that it's supposed to you stay calm. And you follow these couple of basic rules. And for the most part, things work out about the way you expect. And that's what people seem to be able to handle and you throw them into this. This medical situation where nothing they're seeing is making sense and they want the rules. so badly. So then the doctors give you the rules.

Lisa 20:02
And the doctor in this society is not to be questioned often by people or they feel that they don't have the knowledge necessary to question the doctor. Whereas we're the ones that know our children and ourselves the best. And that's what I learned through all the other challenges all the other medical challenges over the past 1516 years is, I have always questioned what the doctor says.

Scott Benner 20:29
And when people do find time to challenge like they, they kind of get the nerve to challenge something very frequently, at least in this space. As far as I can tell, they pick the wrong hills to die on, they challenge the wrong things, they, because they're seeing, they're seeing so many ghosts in their diabetes care, they can't make sense of everything.

Lisa 20:51
I want to give you an example.

Scott Benner 20:53
I had one, but I want to hear you.

Lisa 20:55
Because I so I learned to be aggressive and bold with insulin, you know, through the podcast tonight. And I and I back it up with math. And so I feel, you know, quite confident in what I'm trying to do. And I generally take like a concrete situation. And I'll like back it up, for example, in the evenings when our son falls asleep, we fight rises, and I've come to determine it's a combination of growth hormones, and also late digestion of dinner. He's a huge eater. I mean, he he eats massive amounts of food every day. And so I was trying to adjust, you know, that from 9pm to midnight type timeframe and am I don't ask for much help from the Diabetes Center. And but I really wanted to get aggressive and I thought, Oh, can I really do that? Like I wanted to almost like double his basil, you know, those three hours and, and I called the nurse. And I literally shocked her because I said, I think I want to double his basil rate for three hours. And she says, Oh, well, we we recommend only doing 10% changes at a time and then waiting three days. And I was like, Thank you Bye, click.

Scott Benner 22:05
So the thing that I most frequently say to people that that they just can't wrap their head around is here's the scenario right? There, Basil is too low, they don't know it. And they miss on their meal insulin, so their blood sugar shoot up. So they have a lot of spikes a lot of highs then later they crash low. And then they put in food and they spike and they're on this, you know, it's never ending. It's a roller coaster. And so I'll get ahold of somebody and say, there's like we haven't, we're having a lot of lows, what would you do here? And I say you need more basil. And so now I've said more insulin, right? And they're like, No, no, like, it can't possibly be more insulin because the blood sugar keeps getting low. And that would indicate too much insulin. I'm like, no, that indicates poorly timed insulin. And that now your three steps into this situation. And I haven't said this on the podcast a lot. But you get much more past three levels of thinking. And you begin to lose people. There's there's a lot of balls up in the air. And you have to remember how they're all impacting each other. And I'm not saying that you could put me into a different scenario. And I'd be some great thinker. I'm just telling you that around diabetes, I can see all the balls up in the air like diabetes, to me feels like the end of the matrix. When Kiana figures out how to slow the bullets down.

Lisa 23:33
Yeah, and your daughter is very fortunate to have someone who gets that and I feel the same way about our son. But what I often feel is I feel so bad for those kids who have parents that don't understand the all of these complex factors together and they're getting this very traditional direction from their diabetes, you know, resources on I just, I see these curves. I know I've heard you before Scott, you're like, oh, man, I just couldn't not say anything. Like when you see something and you're, you're like, I just couldn't not say anything. And I don't ever say anything to anybody because I don't have the energy to spare beyond brushing my teeth right now.

Scott Benner 24:21
Are you sure you would get the tacos to be again, or whatever it's called?

Unknown Speaker 24:25
Yeah.

Lisa 24:27
Do you know that's the Japanese name for a device they use in Japan for catching octopuses. It's the shape of this almost like a it's like a vase. It's like a it's an octopus catcher. It's called a takotsubo. And it's the shape that the heart gets when it has this left ventricle failure.

Scott Benner 24:46
Okay, so at some point, a doctor saw this on an image and thought that it looks like the thing that catches the octopus.

Lisa 24:52
I mean, whoever that was, must have been catching some octopus.

Scott Benner 24:57
So I don't want to get away from what you're saying. And I have something I want to get by as well, but first of all it a long time ago, I came, you know, to the conclusion, as we all probably should, that you cannot just go out into the world and fix everybody or help everybody and is really sad to see someone struggling and walk away. And I will tell you that for me, it feels like, it feels like I came up on a car accident. And I could get them out. But I just decide not to. And I leave. And so when I say you

Lisa 25:30
wait for the paramedics to get there, and then you leave

Scott Benner 25:32
well, but but the point is, is that I wouldn't leave a car accident, but at some point, with my life being intersected with social media, which by the way, I don't particularly enjoy. And and somebody new comes every five minutes, and I look and I think I could fix that. And I don't have time. And and

Lisa 25:53
around the corner last night and there was this old man in a wheelchair outside and he and he was like trying to push himself up a hill. And I said to my husband, oh, I want to get out and push him. And he looked at me like I was crazy. I said, I want to get out and push him and he said Lisa, you know, you can't get out and push every single person that goes by in a wheelchair.

Scott Benner 26:12
Yeah, your life, your life would literally become about constantly about other people. And, and so listen to me this podcast, if I'm wrong, I'm wrong. But I think if you listen to this podcast, you'll understand how to take care of diabetes when it's over.

Lisa 26:26
I totally agree with you, Scott. And if you can actually take it in, I mean, sure. But yeah, I agree. And it changed it for me too. You know, it did, I had I had read in the hospital, we were only in the hospital two days with the diagnosis and I had already read through the whole sugar surfing, you know, website and I had ordered things like a pancreas and pumping insulin. And then I just met, you know, just child through all of that ended up in the hospital and started listening to the podcast. And, and as I was afraid this, you know, around three, four or five months into it, when I had this horrible fear. You really changed it I you know, I you really made me feel bold. So thanks.

Scott Benner 27:20
If you're interested in the insulin pump that my daughter has been wearing for ever since she was four years old, or the glucose monitor that she's been wearing for ever, since she was six, maybe a long time, then you're gonna want to know about the Omnipod tubeless insulin pump, and the Dexcom g six continuous glucose monitor. Let's start with the Dexcom. The Dexcom g six is a glucose monitor that gives you readings and data in real time. You can get them on a receiver or right there on your iPhone or Android phone. This is beyond exciting. And if you're not excited by it, then you don't understand what it does. Try to imagine seeing your or a loved one's blood sugar in real time. And not just the number not just she's 89 or 53 or 120. But what direction is that blood sugar moving? Or is it stable? And if it's moving in a direction? How quickly is it moving? That's the kind of information that is next level. That's how you make ninja level decisions about using insulin and type one diabetes. At least that's how I do it. And I think you could check it out@dexcom.com forward slash juice box. You can get started right there or just getting more information but one way or the other. You need to start looking. I just opened my phone. My daughter's blood sugar is 104. There's a little boy named Dominic. I'm watching his blood sugar today. This is 106 both are stable. not crazy. You could do that too. You could do it for a husband and a wife, a friend, mother, a daughter, a son, anybody you care about. Think about the possibilities. A school nurse could watch if you want it or not. It's completely up to you. And how do we give my daughter the insulin that made that 104 blood sugar? Well, we do it through the Omni pod tubeless insulin pump. It is tube less. I know that might be like if you don't have a pump right now like does that matter? But it does. Other pumps have tubing. So there's an infusion set on other pumps that goes into your skin followed by a long tube that has to snake through your clothing or whatever and then goes to a controller where the insulin is and where the buttons are. With on the pod. Everything is in one small pot. You put it on and then you tell the pod what to do from a wireless tubeless controller. It is very small, sort of like a cell phone. The great news here is that some of you will be eligible for a free 30 day trial of the Omni pod dash and that is available at Omni pod dot COMM forward slash juice box, go and check it out free 30 days of using an insulin pump with no strings attached and no tubing attached, but you don't have to buy it. If you do the thing in I mean, you could do the 30 days and be like I don't want it. That's not a problem. There's other stuff at that site too. You could also get a free no obligation demo pod, which would just be one nonfunctioning pod for try on and where just see if you dig it or not. So maybe you'll start slow with a nonfunctioning demo, and then move up to the on the pod dash trial. Who knows, there's only one way to find out on the pod.com, forward slash juicebox. And please don't forget, touched by type one.org. and define touch by type one on Instagram and Facebook. They do amazing things for people living with Type One Diabetes, they're a great org. And I hope you check them out. There are links to these and all the sponsors in the show notes of your podcast player, or at Juicebox. Podcast calm, please remember, when you click on the links, you're supporting the show. So I'm not saying just click on them. But if you're looking for a pumper CGM, or to help an org or glucagon that comes in a hypo pen, or the most accurate blood glucose meter I've ever seen in my life, I'd appreciate it if you did it through my links. Thank you very much. Let's get back to Lisa.

You're very welcome. And I'm super happy about that. I have to tell you, you named a number of things that I know people really like. Think Like a pancreas, that book is incredibly popular. Pumping insulin. I know some people really love sugar surfing, I've had Dr. ponder on the show. Yeah, I know. I've listened to it. But I've never read any of those books. And if I read those books, not those books, forget those books for a second. If I read a book, I just know how my brain works. If you told me Hey, the answer to diabetes is in these books, I would think oh, well, I'm never gonna figure this out. I'm just not it doesn't work that way for me. And I don't think this podcast is for everyone. I think there are plenty of people who can and will read think like a pancreas. And they'll just be like, Oh, that's it. Great. You know, but I think that the thing about the podcast is that it's alive. You know? And so when people ask me, can you write a book about diabetes, which people ask me constantly about, I'm like, that's a waste of time. The podcast is the right way to do it. Like conversations with the right way to do it. hearing things, explained multiple ways by different people. Until the thing that gets to you gets to you. And you're like, Oh, that's it. I understand. Now, this to me is the way but once you write something down, it's static. And then something changes, you start wrote

Lisa 32:32
down, if you wrote down the things that are being said in this podcast, you probably get sued.

Scott Benner 32:39
Well, you know, hey, not for nothing, too. I'm not a doctor. All three of those books are written by people with degrees. Yeah. And so you know, and not even just that, I think, but if I wrote it all down, it would either be a million pages of text, or it would be too, because there's part of me is like, really believes when I tell you like this is all timing and amount. That's it, you just have to use the right amount of insulin at the right time. There's no nothing else to it. There's Don't get me wrong, there's a bazillion other variables. But as you start experiencing them, them, you eventually just figure out Oh, this is potato chips. I get this now. And this is when they're playing ice hockey, I understand now. And you just you grow into it. I would tell you that if it wasn't for this podcast, I don't think I would. I don't think the word diabetes would come into my head maybe once a day. Because it's just easy at this point.

Lisa 33:39
And I think you guys are looping still, right? You're still

Scott Benner 33:42
Yeah, it but I felt that way prior to that as well. And, and the loop just kind of tightened everything down a little more takes out some of the, you know, you know, when you're just looking at a 97 blood sugar, you're like, this is great. And then all of a sudden, it's 130. And you're like, Huh, what happened? Like those, those kind of moments go away. You know, I

Lisa 34:04
ordered I ordered them rightly links from the US that have arrived and I was gonna build and I decided to postpone it now because number one, our son who has you know, a learning disability and, and all the other issues and he's actually getting pretty good at like, using the PDM 80 style PDM you know, on the old on the old Omnipod. Now, the people around him during the day are also you know, understanding when I tell them I mean I'm managing diabetes by SMS to adults that that are around him and he is gaining some self I wouldn't say not self care, but but he's able to understand like, Oh, this is what I'm supposed to do when she says you know, put a tent Bissau lawn and so I decided to postpone it primarily because of that, but also because I I feel like I've got such tight control right now that I'm going to have to go through a period of relearning and re testing all of the factors. And so I haven't done it yet.

Scott Benner 35:09
Yeah, you don't seem like the kind of person who should pick up a hobby. You know, I'm gonna try woodworking, or you know, and I'm looking at our graph, and it's great, you obviously know what you're doing. And it Listen, honestly, had one person not badgered me so harshly to try this algorithm, I had no reason to do it, I was never going to do it. And it just was, she said, like, I really think that people in general would benefit if you understood how to use this. And I agree

Lisa 35:42
with that. And I and I had planned to do it. And then I chose to at least postpone for for different reasons. And, but I do manage his diabetes quite a bit like Luke does, I am using temp bisol, you know, a lot. And I use that a lot as a big tool, kind of as loop is adjusting the bisol a lot. So. So I do I,

Scott Benner 36:05
I was I was an algorithm for many years on my own. And it just helped me, it helped me understand like, it's now like, when I when people ask me, like, how do you excuse me, when you you see a high blood sugar with loop? Like, how do you get it back down? Because the the algorithm does not want to come down quickly. Right?

Unknown Speaker 36:27
I know you open it, don't you?

Scott Benner 36:28
Yeah. So I basically tell the loop. Okay, you go away now. And then I

Unknown Speaker 36:32
carb sign I

Scott Benner 36:32
do. I don't even fake carb. I just put in a bunch of insulin. And I and I know where in the drop to close the loop. So that levels off? Yep. And if you think that's something magical, it's not I just did it a bunch of times till I figured it out. And people are like, Well, you know, they would ask them, well let what number do you turn it back on? I think it would be different for every person. What I'm saying is, is that I did it. I watched the graph. Yep. And one day, I was like, Okay, here. And when I say here, again, I'm not saying a number. It's a visual. Like I look at the line.

Lisa 37:08
That is so interesting, because that's exactly what I'm looking at every, every moment with, with the diabetes management. It's not about the number for me, like I've never had, like, I don't like have a number goal. What I have is I want it to be as little variation is possible.

Scott Benner 37:26
Yeah, you're just flying an airplane, and you want it to be smooth. You want it to go up smoothly and level out smoothly and come down smoothly and level out smoothly. Excuse me, let me take a drink for a second. At one point, Dexcom sort of changed their graphics on the follow up. And I had them on one day and I was like, don't do that. Like don't make it look different. I know what this looks like. And I was in a panic for a second. But you know what? I see it the way it is now too. They could change as much as they want. I could keep figuring it out. It doesn't matter.

Lisa 38:00
I don't use follow a nearly at all.

Scott Benner 38:03
Are you using sugar mate? Sugar, mate? Okay, yeah, and I have that as well. And I don't look at that as I need. I like Dexcom follow for the line. I like sugar mate for kind of the information that's on the front page of it a lot. I'm actually getting ready to do something that I think I might be, I might be doing something with sugar mate coming up. Which will probably happen before they put this out. So I'll tell you, I'm going to wear a G six and broadcast my blood sugar's live on my blog. And then I'm going to tell people when I'm eating and what I'm eating so they can see how a pancreas handles the different situations. Because I think that information will help them understand their kids and themselves.

Lisa 38:51
Do you know we use we use candy called Mentos if if if we have to treat kind of an aggressive following blood glucose, we don't have lows, but but essentially physical activity and then you know, trending down and we don't use. We don't use glucose tablets. So Mentos has glucose in it. That's the Skittles, what have you and and so I decided we came home from summer vacation and there was a half a package of this Mentos candy left. And I was kind of I don't usually eat candy, but I just thought well, I like to have those and I so I ate half of a role. And then I was just I had this like epiphany. So I went and I got the band tested my blood sugar. And I mean, I was super high. I was like what's that in? 8.8 times eight.

Scott Benner 39:39
I have my finger right here. So you were 8.8 by 8.8. This is a team Xbox 160 Yep, I have it at 158 there's a beautiful I don't know if you saw it but a listener built this. This calculator that does a one C and blood glucose. So like I I'm on. How do you say it? Is it mimeo? How do you guys say MMO? l do millimole millimoles. Okay, so I just put in 8.8, it immediately told me that that's in America 158. And it tells me that if your average blood sugar is a point A, it will come to an A one C of 7.1. And that was

Lisa 40:22
after a half, half a package, like maybe about double what I would use to treat it, you know, drop with him,

Scott Benner 40:28
right. And your functioning pancreas is in there fighting off those Mentos. Right,

Lisa 40:33
I test 5.1 Exactly. All the time. Like, whenever I test, I'm just at 5.1, whenever I see, well, is 91.8.

Scott Benner 40:44
And that gives you in that situation, I'm assuming gave you a real idea of Oh, that's why Mentos stopped drops so well. Like they're really fighting

Unknown Speaker 40:55
rocket fuel, fuel.

Scott Benner 40:57
It's funny how everybody just thinks of it differently like, but in my mind, it's sort of just like these opposing forces. It feels like a cartoon to me like fire like a flame thrower on one side and a flame thrower on the other side, and they're just blasting at each other. And they kind of meet in the middle and dissolve and like, that's how I think of the sugar coming in to press against the insulin that's pushing down, and then it pushes back up until they kind of you know, they both go off. And hopefully you're left about where you mean to be. I don't know. I can't imagine. There's What do I want to say there are not many other places in my life where the way my weird brain works about things, or people are like, Oh, this is very interesting. And I should listen, I can't believe it worked out for diabetes, of all the bizarre things I honestly can tell you that that this is my podcast still confounds me. Like, it doesn't seem like I should be the person doing this to me even. But

Lisa 41:51
thank you revisit, you're a visual learner and are like a picture learner. And I am a person who I have to draw when I have to circle and move. I just recently went to law school, you know, it's free here to go to university. So I'm an engineer, but I just went to law school right before this, this diagnosis and all the young kids, you know, they're like typing in a computer. And I hand wrote on paper, because that's the way I learned and your way of learning and communicating works really well in this kind of visual interpretation of the blood glucose trends and levels on so I get it. I'm also very visual. And I think that's why it works well for me, too.

Scott Benner 42:30
Yeah, it's crazy. You know, every time you mentioned Sweden, I think of the chef from the Muppets. I'm like,

Unknown Speaker 42:34
Oh, that's funny.

Scott Benner 42:35
I'm like a seven year old, like, I can hear it in the back of my head doing like, I'm trying to keep up with our conversation and overwhelmed, doing be doing in that's going on. And

Unknown Speaker 42:46
I don't even love The Muppets.

Unknown Speaker 42:49
Anyway, back

Lisa 42:50
to Sweden, I was thinking, when I was preparing, just kind of where I'm at with diabetes management, I thought to myself, because I had to relive this a bit just kind of thinking about talking to you. And I thought, wow, I couldn't imagine going through what we've been going through the past 11 months and having on top of it the financial pressure of insurance questions and insulin costs and things like that. I I really thought hard about that today that I couldn't imagine feeling any worse than I felt going through this, this first, you know, adaptation to life with a child with diabetes and, and just the thought of people, you know, not taking insulin they need or not having access to the medical technology they need, or being afraid of losing your job. First, in the first hand, in the second hand, you lose your insurance on top of it during these times. And it's like it's inhuman. I mean, we it doesn't cost anything, nothing related to our son's medical care. And especially with diabetes. I mean, nothing is a cost for us straight out of the pocket. So I don't have to pull insulin out of a pump that goes bad or there's no insurance.

Scott Benner 44:14
You'd have to fight comm or anything like that.

Lisa 44:17
Oh, no. I have the G six on him two weeks after diagnosis in the Omni pod about seven weeks after diagnosis. Terrific.

Scott Benner 44:25
It really is. What kind of insulin does he use?

Lisa 44:29
He uses he uses what would you guys call it as it called Nova log. It's nobody there.

Scott Benner 44:38
So it's no is it? No volin there or novo novo? No, you call it something completely different? Yeah.

Lisa 44:44
He in the beginning he had you know the when he was on MDI, he had I think you call it a basketball or we call it a basketball. So we had basaglar and novolog. And now he just has of course no vlog.

Scott Benner 44:57
Yeah, that's amazing.

Well, how is I don't want to make you upset, I guess. Are you okay? Like, how did you? How did you get to okay?

Lisa 45:14
What's a lot of support? I so, you know, I think the first few weeks for the first month was I can control this, I can handle this, just like I've handled everything else that's come our way. And I was somewhat, you know, like magical about it about reading and I wanted to know everything there was about diabetes, everything there was to learn. And that was my, that was my mode, that put me into the hospital. And then I was forced to chill out and ask for help. And then I ended up referring myself to psychiatry care. over the phone, I call them said, I'm concerned about my mental health. And I got help. So I a combination of just having, you know, therapist contact me twice a week, and some medication and some help asleep. And then with time, so they tied mostly with something called adjustment disorder, like and I remember the doctor saying that the psychiatric doctor saying, Okay, well, Lisa, you're going to feel better in about nine months, you just like the body has a great ability to adjust again, and we're gonna do all these things to get you there. But you will feel better. And I, I could, I never thought I would. But I did, we did have summer vacation. And I think just going from diagnosis to putting him into an environment with other people that didn't understand what was happening, and then trying to manage his diabetes remotely. And he goes to a special school in another area of the city. He rides in a taxi three times a day to special schools and care programs. And so I was having to, like take care of him, but I couldn't see him and I couldn't touch him. And I couldn't see the food I had to. I had to like use the pictures they were sending me and the weights they were sending me. And so that was just like this intense demand on me both workload wise, emotionally brain capacity. And then once he was on summer vacation, and I kept saying, why don't you just stay home with us when school was out? No, I want to go to my after school program, he wants to go and be with, you know, friends and, and with these, these mentors that lead them and when he got home, and when I got six weeks with him 24 hours a day. I just think I just healed me. I just got to share with him some more. And when I sent him back to school, when school started the end of August, I just I felt calmer. And he understood a bit more from his time with me and with us. together and I just so far. So, so far, it's only been what, five or six weeks since school started in this kind of like, energy. I got refilled during the summer. I mean, it's still lasting. So I'm feeling better. But it was it was touching go there for a while. I was concerned about myself. I was shaking, most of the time.

Scott Benner 48:21
Yeah. I told my son recently that with us all kind of living on top of each other because of COVID. And him being here instead of being a college, I said, Look, I realize how much you're missing. And I'm sorry that this is your experience right now with college. He's now in his bedroom, taking classes. But I said I'm going to look back over this time and be so thrilled to have this extra time with you. And and I I feel better when he's here. Yeah, I don't really know another way to say it. Like I just eat seems right that he's here. Now I'm

Lisa 48:57
going to start crying our older son just left for the university, just

Unknown Speaker 49:03
trying to learn things.

Lisa 49:05
No, I mean, he he just left and moved to the other side of Sweden to a university. And so this is the first time our older son has ever really lived someplace else for a period of time. So so now that your son's home, our oldest son left no,

Scott Benner 49:21
he'll be going again soon. He'll be out of here pretty soon there. He was talking to his coach the other day and he's like, I think you guys will be back in the spring and you know, so I feel like after the holidays he'll he'll be out of here. But how far did your did your child go to?

Lisa 49:37
Let's see Sweden is the same size as California length and width. And so if you imagine we live on the very east, east side of Sweden, and he moved to the very west side so that distance from you know one edge of the California State to the other edge, it's it's about five hours by fast train, or car, I think Yeah.

Scott Benner 50:06
Do you feel like you'll be able to visit him at all? When he's there is that is there a reason to?

Lisa 50:11
Well, my husband, you know, helped move him and his, his girlfriend there. But with, with how life is right now here with our younger son, I haven't been there to visit yet I just basically got brave enough to start kind of being in other environments with our son that has diabetes that it took me this summer, it took me about a half a year for me to actually grab up all my diabetes supplies that I have pretty good control of at home, and take them to what we call our summer house, which is another home that we own. It took me about a half a year just to just to do that.

Scott Benner 50:59
So I want to dig into this if you could, yeah, so here's why. Because I couldn't get in my car and drive to the store for the first year. Because I was like, What if something happens while we're in the car? You know, and that's kind of where I'm at. But it's funny to hear you say it. Because for 14 years, you've been in charge of all of these special needs. Right. And and obviously your son's, you know, going to school and taking taxis and he has friends and all that's going as I would I don't want to say as well as can be expected. It sounds like it's going really, really great considering

Lisa 51:34
absolutely doing he's doing really well. But I did feel like that also in the beginning. Yeah. When things happened, and know when different things happen.

Scott Benner 51:43
So did your experience with all of the stuff that happened at birth, it wasn't able to inform you enough for you to ignore similar feelings around diabetes. Sorry, I

Lisa 51:57
think I think it's actually opposite of what you just said. I think it made it more catastrophic that when your body goes into like, like, with a post trauma diagnosis, what happens is like you're living kind of always the flight or fight mode is what you're trying to reason yourself through, right? And when the body just consistently is like, do I fight? Or do I take flight? Or how do I handle this, this emergency that's happening? You know, you're on standby, you're on high alert. And it takes a lot of work. And I had done a lot of work to try to not overreact to things that weren't life threatening. But when the diabetes happened, my body biologically just hopped really fast, right back into that, that's why I landed in the hospital.

Scott Benner 52:51
So instead of my hope or assertion that being through something terrible, makes you ready for it the next time, all I did was show you the path to terrible quick,

Lisa 53:03
logically, I think I think it's and I think logically, I was calmer than maybe a lot of people would have been that, that the doctors in the hospital when we had the diagnosis, like they saw me as someone who was really on it really competent, already reading everything totally at ease, like adjusting well. So on the outside, I was logically well suited to fight, but on the inside, I was weak. I was like weakened from all that I've

Scott Benner 53:32
already cuz you know what it feels like to be punched in the face. And so you're, you know, it's coming, that kind of a feeling.

Lisa 53:38
It's just the body's response mechanism. I mean, it's it's just, it's innate in us. So you're saying it's happened fast? You know,

Scott Benner 53:48
your statement? Is that it to me the definitive answer on this podcast about whether or not you should tell people Oh, you're the right person for this to happen. Right? Yeah. No one, no one's the right person for this to happen.

Lisa 54:00
And I used to always say, before this happened, you know, my people that know enough about us and that have seen some of my doctor, doctor friends. I mean, I'm surrounded by some brilliant, empathetic, lovely, especially women in my life here in Sweden, that and you know, really fabulous people, and some of them understand what we've gone through. And, you know, I'll say to them, they'll say, Wow, I'm so sorry to complain about this, because you guys have it so much worse. And I said, you know, we're all kind of dealing with a mean person that has a child with a fever and a cough and it can't get to see a doctor. I mean, they're stressing over it. It's not just because I've had more severe experiences doesn't mean that they feel any better than me when they're dealing with, you know, issues. But I think the thing with diabetes, I think, where I'm at right now, again, 11 months in I'm almost getting upset because I, I feel that people have this misperception really smart people have this misperception that they say, oh, but he has a pump now. Why? Why are you Why aren't you sleeping at night? Right?

Scott Benner 55:16
Yeah, the pump. But no,

Unknown Speaker 55:19
I mean,

Lisa 55:20
no one I literally I'm a person who was very rarely angry. I really don't feel anger on, you know, at all very much. But I really wanted like punch somebody in the face with a say that because they don't get it and I don't want them to have to get it. But it's like, diabetes is the most I'm thinking of the Swedish word for it. See, but what is that? It's the most unpredictable but it he knows all these factors and what what works today with that food and that time, tomorrow at the same time, and the same food is not going to work and be one day when he has physical education class. Maybe he doesn't drop the next day the same. Maybe he drops. It's just like it's so it's such a constant. constantly moving target.

Unknown Speaker 56:14
Yeah. What was the Swedish word? You were thinking?

Unknown Speaker 56:17
Oh, no, I don't need to.

Unknown Speaker 56:21
Do you don't want to say

Lisa 56:23
I don't want Swedes to hear me say no, I was speaking Swedish in my head.

Unknown Speaker 56:27
Don't say I hear you don't want people to hear you're terrible. Like, like,

Lisa 56:32
Swedish. Yeah, no, I'm still in Swedish. I just I just took a law degree in Swedish.

Scott Benner 56:37
I understood why you won't say it out loud. I don't care if you don't tell me why.

Lisa 56:41
Damn. And I said, all we're for rootsy bar. It was just a word that was non predictable. And it was just sometimes I think in different languages in my head and I don't know which

Scott Benner 56:53
I'm asking you to spell because I'm very possibly putting that in the title of the episode is

Unknown Speaker 57:00
unpredictable.

Unknown Speaker 57:03
What what? Can you spell it? Do you know it? Yeah. Oh,

Lisa 57:06
my gosh, I have to spell it with the sweet but the English pronunciation of the Swedish

Scott Benner 57:10
I'm googling just give it to me.

Lisa 57:12
Yeah. Oh, F. Oh, four. c? CFR. It's a it's a Swedish letter with two dots over it. I'll have to send it to you.

Scott Benner 57:25
Okay, perfect. Seriously, it's totally ending up in the title of this episode. So I just I heard you slip into your like, into like the back of your voice and you were like working through a word to another language. And I was like, This is amazing. Well, you know, I guess that as we're looking here, I'm looking in front of me. You know, your son's born he has all these different operations like right out of the womb, issues with his liver, his intestines, all this gastrointestinal stuff. hearing disability, I'm interested, does he wear something to help him? Yeah, he

Lisa 58:00
has a severe hearing loss. So he wears hearing aids.

Scott Benner 58:04
Do you sign with them at all? Or is that not? Yes,

Lisa 58:06
he went, he went to a sign language school up until fifth grade. Okay, so he's essentially Deaf when he when he doesn't have them on. So there's an issue like when he's sleeping? He can't hear a pump alarm? Sure. So I've had to go buy another baby monitor so I can hear pump alarms in the night from his bedroom. And so if he you know, showers or is in the hot tub or what have you and takes out his hearing aids, then we use sinus support. Yeah, so we had him in assigning school.

Scott Benner 58:34
So then I guess I, it's you told me he has an intellectual disability as well. But I'm, it's funny how my brain stops me from believing that because you understand sign language. But I know, it's just it's a you don't I mean, like, it's a weird, like,

Lisa 58:50
let me let me translate the disability, very concrete is that he'll never he can't, he'll never be able to rack the call. He drove to he'll never be able to calculate carbohydrates will never be able to, he doesn't really understand numbers. And if you ask him, you know, a basic question about x plus y he he's guessing. He doesn't know. So, but he's a super social. He's got great. You know, he's a super social open person who?

Unknown Speaker 59:27
Yeah, yeah,

Unknown Speaker 59:29
well, what and you also Yeah, good. No, no, no,

Scott Benner 59:31
don't be I'm wondering what's your what's your hope like, for his life? And does he think about that? Or is it just still with you? I mean, my 15 year old doesn't didn't think about what they're expecting for the life I'm not sure.

Lisa 59:46
Generally speaking, the lower the intelligence level kind of the more here and now you are so you don't worry as much and that's interesting with diabetes. You know, people talk about the dawn effect and the feet on the floor syndrome. I've heard you know, people talk About that, and his his ex, and that's because people wake up and they get stressed out about what's going to happen during the day, right? Like that's kind of like I woke up now all of a sudden my adrenaline's going, Correct, yeah. He's opposite. He doesn't worry. He wakes up and he starts moving around so his blood sugar actually drops. He doesn't have any feet on the floor effect at all.

Scott Benner 1:00:21
So what Lisa just told all of you, if you calmed down enough, your blood sugar will not go. How calm Do you think they need to get Lisa, do you think everybody needs to wake up stoned or what?

Unknown Speaker 1:00:34
Probably Yeah. Probably.

Unknown Speaker 1:00:37
Right now, I got a lot of cortisol going on over here in America. Just so you know.

Lisa 1:00:41
I do. I don't. It's not being American overseas. I can tell you is it is a it's a show. Sorry. I can't say that on this show. We can

Unknown Speaker 1:00:49
probably bout it's fine. You

Lisa 1:00:51
can see it now. So that's all I can say it to you and I just voted Oh, I just voted from here. So yeah, I'm not we're not going to go down that rabbit hole right now.

Scott Benner 1:01:01
No, there's nothing about diabetes in that. I'm just saying that I'm at a heightened sense.

Unknown Speaker 1:01:06
I know. I know. Me too. Me too.

Scott Benner 1:01:08
I'm not accustomed to talking about this stuff every day.

Lisa 1:01:11
Now. I don't I don't like to talk about all this stuff anymore.

Unknown Speaker 1:01:16
Unless I'm happy that your son doesn't think about it. I seriously.

Lisa 1:01:19
You know what you asked about what my hope is for his future? Yeah, if you forgot what you asked me. And I can tell you that that's probably been the number one one of probably the number one reason why I haven't felt well. It wasn't because I couldn't handle the diet, the management of diabetes, that the problem is what happens when I'm not managing it.

Scott Benner 1:01:45
What does happen?

Lisa 1:01:47
You know what happens, like who's going to who's going to keep his blood sugar healthy, like, Who's How is he's never, he doesn't have the motor skills to put on a pump himself. He doesn't have the motor skills to inject himself. And there's all sorts of help available here for home health. They, like elderly people who have diabetes here in Sweden, I mean, they don't move into facilities, they have home care that comes eight times every day. So someone comes to your home here, as part of you know, the community service and they make your food and they give you your medicines. And so there is that kind of base level of care here that you wouldn't maybe have access to in the US, but they're certainly not going to employ the methodologies that I do. And they're not going to be on hand. 24. Seven to, you know, I mean, I'm up at night and giving him a Korean What do you guys call it when you're correct? the correct direction? Not good. Not a court hearing you guys

Scott Benner 1:02:46
from California, Lisa? Good.

Lisa 1:02:48
I know. Like, like, I start my evening, I start giving him corrections. Once he hits about 7.5. That's once he hits about 135. After he's gone to bed, I start smashing it. And, you know, because I know, I know that once he starts rising, and it's just going to get harder to keep them there. So then they're not going to do that. There's nobody else is going to do that for him. When if I'm not around. So. So, you know, I, it's that's what that's what's hurting me.

Scott Benner 1:03:20
Actually, while I'm on, it sounds like you get to live forever. So that's perfect. Right? Yeah.

Lisa 1:03:25
Can you arrange that? Scott?

Scott Benner 1:03:26
I'll work on it. I'll call the podcast Council and put my powers before us here. Excuse me? Oh, sorry. I'm sorry. I just I don't know what happened. I was just talking. And suddenly, I didn't have a voice.

Lisa 1:03:42
live forever. You know, one of my, one of the other parents in some of the groups I'm with, I'm on the board of an association for people with intellectual disabilities. And she the parents are older, they're in their 70s. And she wrote this book, and she said, and the title of the book, which has been really hard for me is I hope I die first. I hope she dies. First was the name of the book. I was like, wow. Sorry, that was wrong. That they hoped that their child died before them because they weren't going to be around to take care of them. So it is it's hard. You know, it's hard. Like, I mean, your daughter's gonna be able to manage her diabetes on her own as she's an adult and our son won't. And so that's, that's what's hard.

Scott Benner 1:04:30
I can't tell you that. I understand that I understand it intellectually what you just said, but on a feeling level. I don't I don't know how to wrap my head around that other than I mean, either other than to say I can understand the sentiment and because I mean, I don't I'm not trying to make you upset, but there You're right. No one's gonna care the way you know. No, yeah.

Lisa 1:04:50
And maybe but now I'm trying to say well, maybe if I get him maybe if I take good care of myself and I get him to, you know, 15 if I get him to 50 or 60 with really Excellent, you know, diabetes management, maybe we've avoided you know, that the a lot of the damage that can happen and then six, you know, 5060 plus with just kind of like the old style static diabetes management, maybe he'll be okay. I mean, you know, people, you know people manage like that. So the other

Scott Benner 1:05:17
side of that thought is that 35 years from now, I would imagine, I would imagine things are much different than they are right now

Unknown Speaker 1:05:23
in 10 years. I

Unknown Speaker 1:05:24
agree with you,

Lisa 1:05:25
I agree with you. We'll have commercial systems that'll that'll loop. And that'll do good enough, right. It'll be good enough, even if the highs take longer to bring down on a on a loop system, and they're not as aggressive. It'll be good enough.

Scott Benner 1:05:39
Yeah, I think Well, listen, artists, we tried fasp different insulin.

Unknown Speaker 1:05:44
Yeah, I saw that I

Lisa 1:05:45
haven't, I haven't seen what you thought after just the initial,

Scott Benner 1:05:49
I don't imagine we're going to be able to keep up and keep using it not it's working terrific. But it burns every time she gets it. And so it's irritating to just to wear the pump because it's always in the same spot. And she's always getting basil. She's got this background irritation that she says is not pleasant. We're trying to get through to vials to see if it if our body somehow builds a, you know, a way to help it. But I'm afraid if the body builds a resistance to the burning, it's also going to build a resistance to how the insulin works. I'm not I'm not I'm not sure. But she's toughing it out to try it. But we had to give her like a 15 unit Bolus the other day. And the entire time the Bolus went and she just held her arm and she was like this is not good. And so she's really being a trooper to get through it. Having said that, it works more quickly. And she has fewer lows, and she wasn't having that many lows to begin with. So it works really well. And at the same time, I don't know that we're going to be able to keep doing it. Which is

Lisa 1:06:51
nice. It's nice. She lets you use her as her personal Guinea guinea pig.

Scott Benner 1:06:54
I told her I was like this is you know, it's the real reason we tried first was because she has these muscle aches and joint pain sometimes. Right? And I just we're down to like what we were talking about the beginning of the episode, we're down to like picking through the minutiae, trying to find something that helps her. And so I just said, Look, there's probably preservatives in a pizza that don't exist in fiasco. Why don't we try and see what happens. And it hasn't really helped her in that vein at all. Which is why we're trying to wait a little longer. I the blood sugar control aspect was a bonus. We weren't, I love a feature and how feature works. So I wasn't switching away from it because of the insulin. So we'll say, but I imagine she'll be switching back with our next pump, actually. But I don't I mean, you were really nice to come on and do this. And I didn't we didn't talk much about diabetes. Do you have a couple extra minutes?

Unknown Speaker 1:07:52
Yeah, of course. Cool.

Scott Benner 1:07:55
So what's your I mean, obviously, you're texting with adults. So you have this ability to, like I do, and a lot of other people who like I always think of it as like tech support for computer. Like I don't need to be in front of the computer to fix it. And, and so I can kind of see diabetes in my head, and the numbers and just my understanding of what she's been doing. And even now, to be honest with Dexcom follow, I don't even need to know what she's doing. I can infer from the, you know, from the what's happening get

Lisa 1:08:25
crazy when I when I when I write and I say Hey, are you guys out taking a walk or something? And they're like, yeah, and I'm like, okay, just wanted to make sure that was why it was dropping, you know, for sure. See everything they do freak out a little doesn't graph.

Scott Benner 1:08:38
We have a, I have a thermostat in my bedroom and has a motion sensor on it. But I never told anybody. So my wife and I went to a baseball game with my son one day, and we were gone for, you know, a while and I texted Arden and I was like, Are you awake? And she goes, Yeah, I just woke up. I said, Are you in my bedroom? And she was freaked out for like hours. She's like, No, I'm like, I just had a feeling. And I teased her for a while about it, you know, and she couldn't figure it out. But I imagined something similar. Yeah, I just saw I see it. And I infer and I know what's going on. So you're doing that when he's away from you. But the one thing

Lisa 1:09:18
and even with him a little bit even when he's in the same house as us I'm trying to practice with him so that I'm acting like I'm you know that I'm not in the same house with him. So when he gets home and I'm preparing dinner, and he's in his up in his room, instead of me doing all like text him and so I'm trying to teach him that way too.

Scott Benner 1:09:39
I'm a huge fan of that. I really think it what what better time to practice distance care than when if something goes wrong. You can just walk into another room and go Okay, well I mess that up. Yeah, essentially

Lisa 1:09:49
I did that all summer and it's made a big difference in me feeling like he he understands a little bit more than what he did before. So it's just Kind of that's really important for me to try to help him and that we also implemented for that. We always do a split Bolus. So this was before this a long story, but I wanted to implement a routine that would, that would work for him most of the time, because I wanted to Pre-Bolus the lunch at school. And we didn't know what he would be eating or how much and so we started at school with doing just a standard amount every time as a Pre-Bolus. And as I saw it working, we just did that for every meal. And so every time is going to eat, we do the same Pre-Bolus amount against 50 grams of carbohydrates. He eats like 400 grams of carbohydrates a day, healthy carbs, if there's such thing but and so we Pre-Bolus for 50 grams of carbohydrates before every meal, breakfast, lunch and dinner. And that's really helped us actually to avoid kind of like the spikes and the dips. And I don't even use the extended Bolus function on the pump because I love the split Bolus demand a manual split Bolus. So you're

Scott Benner 1:11:01
doing basically when you hear me say, just get some going get some insulin on your side. That's what you're doing.

Lisa 1:11:07
Yeah, every time before, it's, we always give him that and then, and then he can take what he wants. And we don't have to like measure everything out, given the incident before you can eat it. He takes the Pre-Bolus for 50 grams of carbohydrates and then under under the meal at some point, we'll you know, figure it all out. And then we'll give them what's left. And if he didn't eat 50, which isn't very often then we'll supplement it with the you know, something else.

Scott Benner 1:11:32
That's amazing. That's brilliant. actually good for you, I think works really well for us. Yeah, that's excellent. I listen, I think that, again, the way that you use insulin is the whole game, like I just pulled up Arden's blood sugar to look at it. And I'm following other people too. So right now it's 10am, where all these people are all these, these, there's an 18 year old in here and a 16 to 16 year olds, right. Two of them are girls, I happen to know they both have their periods. And I got blood sugars here. 9994 95 are Arden's at school, the other girls still asleep, this, the kids at work, and they all have the exact same three hour graph. And it's just because it's just because I have

Lisa 1:12:21
the right amount of insulin at the right

Unknown Speaker 1:12:23
time. That's it. That's it.

Lisa 1:12:24
That's all it is, you know, you know, his our son's graph, when you don't introduce food into the picture, it's just flat. It's just, you know, once my only issue in the evening is to is to smash that rise, and not smash it hard enough to where I you know, push them too low. And I get you know, I rage Bolus, like you've talked about I definitely rage Bolus. And I've you know, I've upped his insulin sensitivity factor from one to six to one to two for three hours, because I was just kind of like reverse in reality, so I'm just giving him like, like massive amounts of insulin, I just need to make sure I don't push them too low. But once I have them stable, then I know he's gonna ride there. And he can wait to eat until like, 10 in the morning. It doesn't matter what seven or 10 he just writes flat. Okay. The whole time.

Scott Benner 1:13:12
Yeah. Beautiful. All right, listen, you got it, you figured the whole thing out? You're doing I mean, with the amount of carbs you said, well, seriously with the amount of carbs that you said he uses? Yeah. And and where his range is and where you're keeping him and how you're doing it with you know, being aggressive and thoughtful at the same time with insulin. I'm sure you'll get things you know, honed over time, but you're doing incredibly well. Aside of all the other stuff for being 11 months into diabetes. Seriously, you you leapt forward very quickly.

Lisa 1:13:49
Yeah, no, I know. And I mean, I that's I thank you for you know, for saying that.

Scott Benner 1:13:54
Well, it's true if he wasn't sure I would have said something different there.

Unknown Speaker 1:13:57
No, no, no, no.

Lisa 1:13:57
I mean, I know that. I mean, and that's not really like I'm, that's like, that wasn't ever my concern. My you know, like I said, my concerns are other things. And I just, I wish I wish them every parent kind of like got it like this and was able to help their child you know, stay calm what their blood glucose and and it's, I feel good, because I don't want it you know, his other organs are already damaged. He is sorry, was that mine or something was mine. And, you know, his, his livers already damaged his kidneys already damaged is you know, I mean, there's other his heart I mean, there's his other organs are already impacted by other diseases. And so, um, you know, the least I can do is try not to get them more damaged. And, you know, he hasn't had I mean, and this other part, you know, I'm terrified of lows because he doesn't feel anything and so I'm, it's, it's my next challenge. As you know, I hold him between five and seven, four and six is Correct. So five and seven, five would be 90 and seven would be 126. So I don't let him get down to four. I don't let him get down to 70. And I start treating him like bump him up a touch already, when he starts going down there, and he hasn't had a single blood value under for under 70. Ever, ever. Yeah, well,

Scott Benner 1:15:28
he's got so many cards, he's got so many carbs in them too, that it's probably seriously it's probably a little easier to manage. you're managing up instead of managing down the insulin. Is that the way I mean that?

Lisa 1:15:40
Yeah. I think I've listened to you before and and I, you know, you've said something to the fact that if you can hold them steady at 120, you can hold them steady at 90. And then you've said something to that before. And I know, I know that I can if I can hold him study at 100 or 110. I can hold him study at 80. But I'm too afraid to do it because he's not near me. And I'm not. So I tend to err on the higher side I my favorite number. If somebody said to me now, you know when you're a kid, they say what's your favorite number? At least I'd have all these different numbers. My favorite number 6.3. When he's 6.3 6.3 and when he's 113. I can I just I relax. It doesn't matter. Like in sleep like that. To me. That's like nothing bad can happen because I can catch it. If he's low and I can catch it. If he starts going up.

Scott Benner 1:16:32
We say your math is really tight before I could type that into the calculator you have the answer. Like all find out for Well, listen, then do those. If you want to try to go lower, just do it when he's with you on weekends or days. We do we try it right?

Lisa 1:16:49
We do. I just also don't want to give him I think you asked me earlier just now on the podcast, you know, is he worried and I gave you this feed on the floor analogy. But it's interesting because he he looked very thoughtful at dinner two nights ago. And I asked him what was wrong. I said, you know, what are you thinking about and a lot of stuff happened about a year ago at this time, we had several losses in our family and then of course the diabetes happened and and he didn't tell me and and he's not allowed to have Facebook and stuff. But he does have an Instagram post with with seven female followers. He only likes women. He only likes girls. He likes women. More so than girls.

Unknown Speaker 1:17:28
He's right. Yeah, no that way. I'm

Lisa 1:17:31
funny. Like all of my girlfriends is our his like, anyway, he posted a picture of himself two nights ago and I'm gonna do this translation direct from Swedish picture of himself in the mirror and he writes your attic. Lord, I am happy. In my new life. I have had a young big, I've had a I've had a job big, hard. I've had a hard year, the last year. It's been very tough the last year, but now I'm very happy in my new life. I hope you understand that. And he put that on Instagram. Whereas he's never been able to really express to us that I'm worried about diabetes or that I feel bad. And I mean, when we discovered diabetes had a blood sugar of he was outside working in the yard for eight hours with my husband like raking leaves and outside in the rain. And he and I took a Jacuzzi outside and not we walked in I just had this epiphany and I said, Oh, crap. He has diabetes, because he had like, peed the bed and was really thirsty. And he had a blood glucose of let's see, it was 30 he had a blood glucose of 540. And literally I'd asked him all day long. Are you okay? Are you feeling sick? And he's like, Nope, I'm going back out to work again. So he never complains he never like tells you that he's unhappy. Yeah. But I think he does feel the stress and I don't want to add to it by panicking when I see him dip and under under 79

Unknown Speaker 1:19:05
smile. I

Lisa 1:19:06
just want him to feel like hey, we've got all the time in the world. Hey, you want to eat three Skittles? You know, I mean, you notice these micro micro adjustments. But I'll get there someday.

Scott Benner 1:19:18
I know if needed. I think there's pretty damn close now to be perfectly honest. So I don't see what you could be doing that that would be that much better. I understand that. There's always better I'm not saying that. I'm just you're doing so well. I think if you're not if you're not really proud of yourself and somewhat satisfied.

Unknown Speaker 1:19:39
I am Yeah. Yeah.

Lisa 1:19:42
I'm worried about I worry about him. I love him a lot. So I yeah, just trying to, you know, melted in with with, you know, with what, what else we're dealing with and I just, you know, I want to keep them safe and healthy. That's really all I want.

Scott Benner 1:20:01
It really sounds like you're going through? Well, let me let me tell you this. And I actually, I have to go in a minute. But I talked to a lot of people like this. And I talked to many people privately. And I can tell when they're going to be okay. And I kind of boiled it down to desire and concern. And when people have the desire, and they have a reason to want to get to a place, they most often do. Yeah, you know, I don't see why you would be any different, you're obviously bright enough. And you're, you're paying attention to it, you're seeing aspects of it 11 months in, that I spend hundreds of hours trying to artfully beat into people's heads. And so you're, you know, you're, you've got it, and I don't see how there's anywhere to go but up, honestly, you know, yep,

Lisa 1:20:56
I just need to moderate, you know, the attention to it as well. And like you, like you've said a few times, or more than a few times, you've said, I don't think that much about diabetes in the day. And I can tell you like that's kind of all I think about and that'll be my next goal is to think about other things.

Scott Benner 1:21:12
Yep, you set those alarms, and you just wait for them to beep. And if they're not beeping, you don't think about them, you just trust that what you know is going to happen is going to happen.

Unknown Speaker 1:21:21
That's it. Yep.

Unknown Speaker 1:21:23
I really appreciate you doing this. Thank you so much,

Lisa 1:21:25
Scott, no great talking to you. I feel you know, really enjoy just chatting with you. And you're doing a great service for for this community. And you know, I, it needs more of this. The community, the parents, and the people need to have access to more modern thinking on how you do this, and I, you know, advocate for that

Scott Benner 1:21:52
all the time. I appreciate that. And let me just have hardly say, and with a little bit of just in my voice. They don't really need more podcasts. They just need to hear this one. I don't want I don't need What are you trying to do? Give me a bunch of competition. Somebody's gonna hear this and think I should start a podcast. You people don't need a podcast.

Unknown Speaker 1:22:06
I have one. Only one pod. Yeah,

Scott Benner 1:22:09
go do something else. You're fine. Find a hobby.

Unknown Speaker 1:22:12
I was actually thinking more in the hospitals. I was thinking more newly diagnosed. No, listen, I, I

Scott Benner 1:22:20
I'm sorry, you faded away for saying I couldn't hear you. But

Lisa 1:22:22
it's a pity, it's a pity that people aren't getting access to more knowledge earlier on. And they have to go find this on their own.

Scott Benner 1:22:29
I don't know how I think about this quite a lot. And I don't know how you're gonna make me upset. Because the way you feel about your son getting older, I feel about myself getting older. Because I'm my, my last goal is to do something that persists beyond me, for people with type one. And I'm I, to this point, do not know how you can take all of this and squeeze it down and tell it to somebody while they or their child is being diagnosed in a hospital. I don't know if you can maybe maybe that's why they don't maybe it's just impossible. I'm not sure.

Lisa 1:23:11
I think you and I should talk offline about

Scott Benner 1:23:14
that idea. Yeah, well, listen, what we need here, Helmsley, we just need some people to throw some some, some support behind some things. Because I do think that there are a dozen 20 or so episodes of this podcast that could be handed to you on a thumb drive. And that would really would zoom you right along. So I agree. There's definitely ways but again, if you're looking, here's the conundrum before we go, right. People have had diabetes for a very, very long time. And there are people who are good at speaking about that aren't me, I'm not saying that. I'm the only one I'm certainly not saying that. But for whatever reason, the mix of my experiences, and my the way I talk to people resonates with a lot of people who hear it, but I don't have any medical degree. So it doesn't matter if this podcast was 100% going to help everyone who heard it, let's just say somehow that was true. They still wouldn't hand it to you. Because I'm not a doctor. liability. Yeah. So it just wouldn't happen. And that

Lisa 1:24:21
we just then we just need to spread your podcast crazily and trying

Scott Benner 1:24:25
to tell people this and it's by the way, it's spreading so

Lisa 1:24:30
modulations Yeah, great, great metrics, Scott,

Scott Benner 1:24:32
people doing this really everybody who helps by telling someone else is helping beyond and I didn't mean to sound all like, I don't know how that sounded just now. But I, I, I worry about the day I can't make the podcast anymore. Like I get too old or, you know, whatever happens. I don't want this information to disappear and I don't want you know, because, think about it. Your son's diagnosed, you find the podcast, you're okay. 11 months later, the podcast does They exist. I don't know where you are right now. And I don't know where all of those other people are either. And I don't want to be a band aid in the world. Do you know what I mean? Like, I don't just want there to be a swath of time where I was valuable, where this information was valuable. And then suddenly it's gone. Like it needs to persist. And, and that's what I'm trying to figure out. So I appreciate you coming on and helping me add to the add to the lore of the show, and somebody is going to hear stuff that you said today, it's going to help them so I appreciate

Lisa 1:25:30
that. Thanks for having me. And thanks for thanks for the podcast.

Scott Benner 1:25:33
Have a great, it's really it's my pleasure. What time is it there, as I'm saying

Lisa 1:25:37
is almost 430 in the afternoon.

Scott Benner 1:25:40
Very nice. I am going to go hit a baseball with my son for a while and try to have a nice day. I hope you do as well stay

Lisa 1:25:47
safe and stay sane.

Scott Benner 1:25:49
I wear a mask. wearing masks, although I have to tell you last night 8pm not tired. completely out of things to do. I actually thought maybe I should just restart the next workday now. like should I sit down and just edit a show? I was out of things to do. And that doesn't normally happen. But apparently if you lock me in my house long enough I run out of stuff to do Yeah,

Lisa 1:26:13
yeah, I was gonna say I don't really wear a mask cuz I don't meet anybody.

Unknown Speaker 1:26:19
Away from people

Scott Benner 1:26:20
be in the house here. No, I it really is an odd, odd time. Just like there's nothing to do I couldn't I in a normal situation I would. You know, I've got a list of things I'd like to do that not the least of which is you know, go visit my mother and other things like that. Yeah. But instead, I'm just standing here going. It'll be time to go to sleep soon. I guess. You know,

Lisa 1:26:44
I lost my father a lot of COVID this spring. Oh, I'm so sorry. Yeah, I know. It's sorry. It's strange times.

Scott Benner 1:26:55
First, I'd like to thank the Dexcom g six continuous glucose monitor the Omnipod tubeless insulin pump, and touched by type one for supporting the show today. Touched by type one.org for Facebook and Instagram. The Dexcom g six is dexcom.com forward slash juicebox. And you can learn more about those free trials that you may be eligible for. And the demo pod that you're definitely eligible for@omnipod.com forward slash juicebox. And of course, I want to thank Lisa, for the really fun, thoughtful, emotional, and entertaining conversation that we had. I'm working on a pretty cool giveaway for you and if everything works out, I'll be able to tell you about it very soon. Keep listening. Please subscribe in your podcast players. Tell somebody else about the show. If you love the show, leave an amazing review wherever you listen. And of course, thank you. Thank you very much for listening. I'll be back very soon with another episode.

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