Scott Benner 6/7/21 Scott Benner 6/7/21

#489 Former Psychopath

Beth is the mother of a child living with type 1 diabetes and celiac.

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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 0:10
Hello friends and welcome to Episode 489 of the Juicebox Podcast. I want to start today by admitting I am not perfect. This is one of these episodes that got lost in my filing system. I am now beginning to think that filing system is not great. Anyway, this is Beth Beth lives in Wales in the UK. She has two sons, one of whom has type one diabetes, and celiac. Beth is on the show today to talk about the diagnosis, looping and some mental health issues that she suffered with at the beginning of her son's diagnosis. This is a fantastic episode, and they just got it got misplaced in my files, I apologize. Nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please always consult a physician before making any changes to your health care plan. And I'm going to finish this episode up and figure out a better way to do the things that I do here. Once again directly to you, Beth. I'm very sorry for the time that this took. If you guys can imagine she booked this in mid 2019. We recorded it in mid 2020. So I'm sorry. Enjoy the show. This show is sponsored today by the glucagon that my daughter carries. g vo hypo Penn. Find out more at G Vogue glucagon.com forward slash Juicebox. Podcast is also sponsored by the Dexcom g six continuous glucose monitor. You can get started right now at dexcom@dexcom.com. forward slash juice box.

Beth 1:52
I'm Beth. I'm 39. I live in Wales in the UK. And my son Finn is 11. And he was diagnosed with Type One Diabetes when he was two.

Scott Benner 2:02
Wow. So you've been at this for quite some time already? Yes. Is it feeling normal at this point? Or no?

Beth 2:11
Yeah, I'm obviously jumping ahead a little bit. We've been looping since August of last year. And that's made a huge difference to our well being and the way we live really. So yeah, I think after all this time is finally becoming manageable, then

Scott Benner 2:28
I will definitely get to that because I want to hear about the entire process. But yeah, I'm a little more interested in the moment. You're in Wales. Yeah. I want to know a little bit about what it's like to be diagnosed there. So can you take me back to when that happened? And sort of how it went?

Beth 2:44
Yeah. So Finn was down, he was coming up to three. So this was the January he was due to turn three in the April? And have he just sort of come out of diapers, as you would call them. So he was potty training. But I noticed that he was going to the bathroom a lot, drinking a lot. But then again, you know, you kind of sometimes think Well, yeah, but he's going to the bathroom or not because he's drinking a lot and vice versa. His clothes were a little bit looser on him. But again, he wasn't wearing the diapers anymore. And so, you know, everything has sort of had a reason for it. But it's sort of over a period of a week really, before he was diagnosed, things started to get more noticeable. And one night, the electricity blew in our kitchen. And so I took my two cents out to McDonald's for evening meal when my husband called the electrician, and it's literally a 10 minute drive. So I took him to the bathroom before we left. And then as soon as we got there, which was 10 minutes later, he was saying he needed to go again. So I took him again, he barely finished his food before he needed to go again. And then we needed to go to supermarkets, which is like literally just across the way from McDonald's. And as soon as we got in there, he started saying he needed the bathroom again. So we found a bathroom there. And then on the drive for me was sort of panicked, really, really panicking that he needed to go again. And every time I was taking him he was actually passing quite a lot of urine. So it wasn't the case. He was just worrying. He genuinely didn't need to go. And then the fall I think it was either that night or the following night. He woke up in the middle of the night and called me for a drink. And I had quite a large glass of water on my bedside table and he would normally drink water. And he would drink milk or sugar free squash and he just done this huge glass of water and then just handed it to me and said more. And it was sort of that at that point. Then I think I started thinking that he's got diabetes because my friend in work had type one. So I was my childhood friend. We happen to work together as well. I've known her all my life so I knew the symptoms. And I think I would that night that was the following day. My husband had the day off work and I was Didn't work and was just to go round and round around in my head. And I rang my husband at lunchtime and said, I think Finn's got a type one. And, and he was like, Don't be so ridiculous. He's been wrestling me all day, we've been playing football, he's fine. There's nothing wrong with him. And I thought, I don't know where there was a mother's intuition or anything. But anyway, I decided I had some glucose testing strips at home urine testing strips, because my other son had had a kidney issue prayer. So I had some of these strips left. And so I decided when he went to the bathroom, when I got home from work, I was just going to dip the urine. And I did the urine, and it just went to the dark as level of glucose possible. So we I rang the what we've got is like an out of our syllabus, or when it's after sort of between nine and five, you wring the out of hours and get in touch with them. So I told him that I dipped his urine, and it was really high indicator for glucose. And they were quite sort of dismissive. If I'm honest, saying, you know, are they indeed Do you sure you've deployed properly and even though I told them all the symptoms that he had, they seemed very skeptical of the fact that he was type one, but I kind of knew at this point. So they said, you know, you can take them to the local hospital, but they may not have the care today that you need, or you can bring him to the main hospital, which is only about 20 minutes away. So I decided to take him to the main hospital, I packed a bag, I knew I wasn't coming home. And then when we got there, they called us in and I'll never forget, he was fast asleep. And he had this parka cord, this big theory called dunks it was freezing cold. And they put like a lay him on the bed. And she was still quite dismissive of me. And then she sort of pricked his finger and her face just dropped. And I said, What's the matter? And she said, it won't give me a read any sugar is too high. And I was dead, then it was basically you get to the ward straightaway. When when I did the urine, there was no sign of ketones, which is a good thing. But

Scott Benner 7:03
when we got real quick, I know you were like in a frenzy when this is happening. But when she did the blood sugar, and it didn't work, did you have this feeling like you want to say Are you sure you did it? Right? Because

Beth 7:13
Yeah, it was like you didn't want to be sort of smug about it because I didn't want to be raped. But I was, I guess I do know to defer your instinct. The wrong way to dip a stick into urine, by the way, on my other side, and I explain this because my other son had had post streptococcal glomerulonephritis, about six months prior. So I had to dip his urine every time he went to the bathroom for months and record the inputs and outputs in the readings. It wasn't as if I'd never done it before. I wonder if maybe you had done it wrong. All those other times? Yeah, maybe? Yeah. So anyway, um, at the time, my husband was just in denial. He was I think, I at that point, I was wrong. And my husband was just like, no, this is wrong, you know. And he said, you know, we went for a walk it and I bought him some sweets. Could it be? Could it be that? And she just looked at him and said, No, you know, this should this should high levels of sugar. He's got type one. Our boys great. I know. He always looks at the positives, which is very grateful for in the following weeks. But yeah, we got to the ward. It was it was horrendous the next few hours, because they were determined to try and get a light into him in case he had DK in case he was in DK. And I kept saying, you know, there was no Keaton's on the orange ship. He's absolutely exhausted. He was screaming, crying. He's been through enough, can you just please wait for the Bloods to come back? And if he needs a line, he needs a line. So anyway, the nurse did get a line in eventually, and then He thrashed, and it pulled out and there was just blood everywhere. And, and she laughed in a nervous way. Yeah. But at that point in time, I could have killed her. And I just said, that is enough. You're not you know, I know it was nervous because she was obviously getting all worked up as well. But I said, wait until the Bloods come back, you're not put you're not putting him through that again. So they found this a bed and he had his first insulin injection. And then the Bloods came back, and he had no ketones. We didn't need to lie, which again, I was quite smug about it. Because, you know, I was like, I don't over these things. And so yeah, we were on mixed insulin injections then that back in 2012, he was at the Nova mc 30. So it was like 30% long acting 70% fast acting, or vice versa. I can't even remember now. Yeah. And he just had sort of the one insulin injection with breakfast and another one with tea, even in meal. But it was just, if I were if I was to go back to that time, I think I've gotten involved with quite a lot of parent groups and advice groups and among sort of patient reference groups with the local health authority now and I know speaking to nurses that are training to be diabetic nurses, or just General news is, and that is one of the things I've said his bedside manner is so important because that I know, when when we finally met the DSN, it was sort of, you know, give me an orange and practice inject in the orange. And, of course, it's not the same injecting and oranges injecting your two year old child. But it was, I know, you've got to get used to doing it. But it was just the kind of way it was just we'll just practice on that. And another thing that was said at the time was, I was desperate at this point, and just saying, you know, do you think there's going to be a cure for this? And, and I'll never forget, she actually said to me, yet I think there will be but I hope it's not during my career, because I love my job. No. Well, that's lovely. Yeah, and I love that has always stuck with me, because I and I remember speaking to a lot of student nurses, a couple of months back, and I said, this is something that was said to me, and they faces were full of horror. And I said, I know. But at the time, you just think, Okay, there we are, then. And it was just kind of washed over. But I think there's so much training needed, especially we've got such a shortage of nurses here with the NHS, which specialized in diabetes, things are improving slightly now. And I'm involved with a lot of the groups that are sort of taking place, but I think there's a huge need for a lot of, and I don't mean to be rude on this. But we've got a lot of older nurses who just cannot keep up with the technology. And I think that's a massive issue with the moment because technology is moving so fast. And they and a lot of them just can't keep up with it. Yeah. So yeah, that was how it started. I was I was, once I was in hospital, I was fine. I was quite control because it was next to me. You know, they were sort of taking care of him. And they knew what to do when they were given him the injections. And then it was sort of when I go home then that I kind of went downhill rapidly. And well,

Scott Benner 12:00
hold on. Because you know what, you're sorry. No, no, you're okay.

Unknown Speaker 12:03
Take a breath. You're

Scott Benner 12:04
doing great. By the way, either. That was a really amazing diagnosis story, or your accent just made it fantastic. I can't tell Oh, I hate my accent. No, no. You get used so many different colloquialisms that I loved. I just I was just giggling over here. So

Beth 12:20
I'm trying to use American words. You know what I'm talking about? Oh, don't worry. I

Scott Benner 12:23
know what you're talking about. And if no one else knows, that's their problem. I'm having a good time. No, see, you're fine, honestly. But you're just you know, a lot happened. And I know sometimes you can look up at that hour and think, am I gonna get to everything? Yeah, but but you will Don't worry. So you're back then. What are you in your late 20s or just turned 30? I was 31. Okay. And you had you had both of your children at that point?

Beth 12:50
Yeah, my oldest son, Keon was six, and Finn was coming up to three.

Scott Benner 12:55
Okay. So this all happens. And I want to just dig into the management just for a split second longer. They're giving you that was what was that? Was that what they called cloudy back then? Or that the insulin? Yeah, that's right. Yeah. So you're shooting like once a day for food, or your expectations for outcomes at that point, just completely different than they are in present day.

Beth 13:20
And yeah, I was obsessed. I'm an accountant by my profession. So I'm upset. You know, I and I'm a huge control freak. So this was the worst thing ever. And because no matter what I did, no matter what I tried, which looking back now, with knowing how useless that insulin is, it's no surprise, but it was so hard because he would be high. And I couldn't do anything, because he literally just had these two daughters one in the morning, one in the evening, and I'd be putting him to bed at night. And he'd be like, 17 or 18, which, sorry, that's in millimoles. Now, I'm just trying to think Well, that would be in your reading bird that is extremely high. And I couldn't do anything, because that was he had his doors. And then through the night, he would always come back into range by the morning, but it used to really, really stress me out how long he was actually high, and how long he was taken to come down from that height and what the damage he was doing. And that was something else that I was obsessed with at the time. Yeah, which didn't help.

Scott Benner 14:25
It gets to you were really imagining, like the internal things that were happening.

Beth 14:30
Yeah, yeah. And I was constantly googling the worst case scenarios and the and the the life expectancy of somebody with diabetes as opposed to somebody without and I drove myself insane for a number of weeks to be honest.

Scott Benner 14:44
Do you think I haven't but he doesn't do that though.

Beth 14:47
I think I was just surprised because I'm just so I'm quite a strong person. And I'm quite independent. And I, you know, I'm not one of these people who if I go to a hospital appointment, my husband say what do you want me to come? I'm like, No, you know, I'm fine. I couldn't leave the house for weeks, I couldn't go to work, I couldn't do anything. And I just lost myself completely Well, for a number of weeks until I sort of somehow somehow pulled myself out of it. You know, I was on medication for a little while. And I joined a support group for parents of children with type one, which massively helped. And I think one day, I just thought, you know, you You've just got to deal with this. It's not going away.

Scott Benner 15:29
What were the real implications in your life? So you are, you're obsessively looking into the worst case scenario of having type one diabetes? Yeah, you're you're you're filling yourself with, you know, internet stuff, which of course, the internet is really only good for like four things and one of them to tell you the worst things in the world. Yeah, the other ones porn, by the way, there's not a whole lot the internet. Email. Yeah, that's pretty much it. And so and so you're doing that? And, and at the same time, you're having those thoughts about and I had them too about like, what did these high blood sugars doing to arteries, veins, you know, her body, how she's thinking, it becomes overwhelming. Did you ever go back to your childhood friend and talk to her, I'm interested.

Beth 16:21
This is a standard joke, because my childhood friend rang me every single day. And I literally never answered the phone. I couldn't even speak to her, the only people I could speak to was my husband and my mother. And I just wanted my mother to take me home and look after me. But it's a standing joke with my friends with my best friend now, because she's like, every day you just completely ignored my phone calls until I said, as I as I got a little bit better, I suppose I finally did start sort of speaking to her. And we did go to she said, Look, I'm picking you up, we're just gonna go for a coffee. And the thought of leaving him then was was another massive hurdle. But it was literally a mile up the road. And my husband was saying, you know, you need to go and speak to somebody else you need to get out. And so we went to this coffee shop. And I kept saying to her, you know, he's gonna die 10 years earlier, then Bella, because, sorry, to go back, her daughter was born three weeks before Finn. And so we spent our whole maternity leave together, we did everything together. And they were we always used to say, oh, you're going to get married, you know, and all this nonsense, but I used to say to her, you know, he's going to he's going to die before Bella. Now he's going to die like 10 years before Bella. And she, she just looked at me, and this is something else that sticks in my mind. And she said, Bella could get run over by a bus tomorrow, you don't know that. That's a ridiculous thing to think. And, and it made so much sense when she said it. And I and I just thought, yeah, you're right, you know, I'm googling all this, all this stuff on the internet is based on people who've had diabetes for 80 years, which, let's be honest, is nothing like all the treatments are like now. And I think it was those type of things and which slowly made me sort of come to my senses a little bit and, and made me realize that, you know, I was focusing on all the negatives, and I just really needed to focus on the positives. And that's kind of what I've tried to do since that moment. Really,

Scott Benner 18:18
I have to tell you, Bella, and Finn would be a great title for a Disney Channel show for like, 20

Beth 18:24
years old, and every time we say they're gonna get bothered, they literally want to vomit.

Scott Benner 18:29
It's not gonna happen. Which got annoying, they're not gonna help you keep your friendship together. So I am I want to know in that time period, like that time period of darkness for you, how long was it? Did it last? I was off work for six weeks. How far down the like the rabbit hole. Did you fall like Were you worried about yourself? Did you think you couldn't get back from where you were?

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I find managing diabetes to be much easier with the Dexcom g six continuous glucose monitor. I don't know that I've ever just said it that way but it's incredibly true. Before Dexcom I was not so good at managing blood sugars. But now that I can see the rate direction and Number all in real time, makes decisions much much easier for us. So think about that. I gonna pick up my phone right now and look to see what Arden's blood sugar is. It is 85 and it is stable. That's it. I can see that right there on my phone in that short amount of time. By stable, I mean, her blood sugar is not fluctuating up or down at a rate the CGM sees, you know, I'm saying like it's not moving, it's not going to be 87 or 88 or 90 soon, but if it was, there'd be a little arrow that would sort of just turn up and show me Oh, the blood sugar's moving this way. Those arrows indicate speed, there's a diagonal up arrow, a straight up arrow to arrow straight up. And they all mean different speeds, and you get to know them very quickly. They're also accompanied by little tones that you can set up. For instance, art and CGM will tell me if she crosses 120 going up, or if she crosses 70 coming down. And that's how I make those decisions. in real time. That's how you stop a 120 from becoming a 190. You can just sort of be like, well, we're getting on a range here. And let's kind of bump it back a little bit. And you're right back at it. dexcom.com, forward slash Juicebox Podcast and can actually share her data with up to 10 followers on Android or iPhone. I'm one of the followers. My wife is another and we could pick eight more. And of course, Arden can see everything on her phone, that doesn't count as part of the 10 It's really incredible. Check it out, please. dexcom.com forward slash juice box. There's links in your show notes and links at Juicebox Podcast comm if you can't remember it, buddy, you can just type it into a browser dexcom.com forward slash juice box Get started today. You will not regret it. Were you worried about yourself? Did you think you couldn't get back from where you were?

Beth 21:56
At one point? Yeah. I even thought about killing myself if I'm perfectly honest, it was really dark time. I can't describe how out of control I felt it was it was terrifying. And and when I finally went to the doctors, and they gave me antidepressants, they put me on to higher doors. And so I spent one night having anxiety attacks all through the night. And my husband literally nearly carried me into the doctor's on the following morning. And just because I was like a zombie between being overdosed on antidepressants, and not sleeping. And she just said you should never have been started on a dose this high. Cut it in half. Here you go. And then she gave me something to help me sleep and said you just take one. And then I remember coming to my room and saying Okay, I'll just take the one and I took one and I actually said that will knock you out for like eight hours. And I woke up after an hour and took another one. And then I woke up after another took another one. And then my husband came in and was like, What have you done? And I was like, I just need to sleep. I don't want to be awake and not dealing with it. So he flushed the rest on the toilet. And then Oh, he

Scott Benner 23:08
was wrong about that candy thing. But he got that right. That's good.

Beth 23:12
So, um, yeah, I think you know it, I just had to deal with it. No, the obviously the medication on a much lower dose was very helpful and, and I slowly sort of pulled myself through I guess, and my husband was amazing at the time, you know, he was going through hell, but he and I, he never showed any weakness to me whatsoever. And the amount of times I just sat there sobbing for hours and he just sat there trying to talk positively to me. And you know, it was my mother, I would never have gone through that time. But looking back now I can't ever imagine feeling alone but at the time it was really bad.

Scott Benner 23:49
I have a number of questions. So prior to the diabetes, Had you ever felt suicidal or had depression before that? No, no.

Beth 23:57
And I had slight slight postnatal depression after my first son but it never ever felt like that ever.

Scott Benner 24:04
And is it and I might be generalizing now from romantic comedies so you tell me if I'm being silly, but it is all that emotion uncommon in general.

Beth 24:17
I do struggle with I think only really since the diabetes I struggled with anxiety more than anything as he takes a new sort of path in life so when he changes a school or like when he went on his first residential trip for the weeks and weeks before that I still get really uptight and anxious and worried and I am quite a you know I do get mood swings but i'm i think i don't think that intense or anything they just just melt my husband says all women are slightly crazy. So I suppose I'm kind of fit in the building.

Scott Benner 24:51
Sometimes my kids say to my wife fear that's gonna make you crazy and I always just go are from across.

Beth 24:58
Yeah, he says as well. You You know, what do you mean? Oh, women mental. I'm like, oh god,

Scott Benner 25:03
I just, I just want a warning light. I've always said to my wife, I was like when your mood shifts if just like a, like a, I don't know, like a light glow of a color would come up over your head or something like that. I'm aware of it. I get into the situation differently. But I felt like I was talking to the person from 25 minutes ago. And that's what happened there. I got very confused. I'm so sorry. Yeah, no, listen, I want to be serious for a second. I love women. I don't know what happens to your bodies with all the chemicals and the hormones that are running around on you guys. You're doing a great job. It's not Yeah. Yeah. I'm watching Arden over the last week. Just you know her as her period comes on all the shifts that are happening or stomach hurts and that it doesn't and then she's hungry. And then she's not. And you know, just all of that is, you know, it's just it's the slightest little, like hormonal change inside of you. It's, it sucks. And

Beth 25:57
yeah, listen, I can be the most evil person at that time. You know, I hate everybody. And everybody gets my nerves. And then the next day I wake up and I go, I was a bit yesterday. So yeah. So yeah, it's not fun being a woman, I can assure you

Scott Benner 26:12
know, but I mean, all the political like upsides and and how you're treated in the workplace, that all really fixes it. Yeah. My gosh. So you're in a you take some you're taking the medication, you're it really is when you look back on it no differently than having a really unexpected and tragic death in the family. And yeah, you hear about people needing to be sedated through that for time. And, and that's it, it just, it's more surprising to you, you said because you you thought of yourself as a more as a strong willed person. And by the way, I don't know that there's a correlation between being a strong willed person and not being able to hear that your kid just got diabetes like Yeah, yeah, that's upsetting to everybody.

Beth 26:54
And that's exactly what I said at the time was, I felt like it was a period of grief for the healthy child that I lost, if that makes sense. Yeah,

Scott Benner 27:02
I think so for sure.

Beth 27:06
But during one of my trolls fino, bad news stories on the internet, I found a court and and this has stayed with me as well. And it's something that I've kind of tried to live by since. And it was the person who knows the most about diabetes lives the longest. And, and that's kind of changed my tack, really. And I sort of thought, Well, yeah, that makes sense. And so I, you know, I bought books, and I read about things, I joined loads of groups, and I tried to find out as much as possible. And obviously, that's part of how I found this podcast and everything, because I'm always trying to sort of learn more and, and I think that's what I've tried to do is try to keep up with the most up to date technology, try and get our hands on anything we possibly can to make this easier to manage. And I think at that point, it was when I went from all the bad news stories to think in general, this is not going to ruin our lives, this, this is us, this is where we are. And we've just got to make the best of it. And it sort of went from the really,

Scott Benner 28:01
I've always said that the people who listen to the show, all have one thing in common. They're there, it's it's usually the way they got there. And yeah, it's either the people who are really searching for, like next level ideas, they don't want to just sit in the status quo, or it's someone who's had such bad luck, getting blood sugars together. And then someone comes along as it either happened to me and this podcast helped me. And they're so they're so lost and dying for any kind of information that they're really willing to jump on a podcast and listen to somebody. Yeah, they say something, you know. And I think that's why I think that's why when you see the people who listen to altogether, like I have a private Facebook group. And I you know, I just realized I say that all the time. And I never really put any context to it. And I'm, I'm learning more recently, that a lot of podcasts and other entities charge people to be in those private groups, they make it like a fee or a membership. I don't do that. It's just a Facebook group, where people can talk a lot about management. And when you see all these people together, it's fascinating how much they've taken out of the podcast and other places and how good they are at talking about it. It's Yeah, it's such a different thing. From some public spaces I've seen we're just anybody can kind of trickle into it. And then they end up talking probably from those articles you read online. You know, sometimes it's interesting that there's more fear. It's nice when you get a bunch of people together who feel emboldened.

Beth 29:33
Yeah, I think as well, you know, I found this podcast about I think it was about 18 months ago. And even though I've read the books and you know, you read things online, it seems it's so much easier to listen to somebody talking about things then read in I find and, and even though I'd been obviously, Finn had been diagnosed nearly seven years at that time. It was it was like a lightbulb moment when it was kind of you know, it's easier To treat low sugar and tobacco with a high and I've never really thought about it like that. Because it always be always high, but I've corrected him so he should come down now Why isn't he come down? I'll wait two hours and I'll correct him again. And then all of a sudden it was less like a lightbulb moment. Well, yeah, give him the extra insulin. We've got a Dexcom. You know, we've we've switches, watch the arrows and then treat him and until we started looping was a huge, huge benefit that I adopted and made a huge difference.

Scott Benner 30:28
It's funny, you're you're that's what's where this conversation is going to head because last night, I have you ever heard Have you heard the episodes with Kenny the fox in the loop house episodes? About? Yeah, right. So Kenny and I were talking last night, because when this whole Coronavirus thing happened. And Arden is now at home. It took a few days, but her insulin needs during the day during the time when she was going to be at school significantly dropped. And see I was have gone through the roof. Really? Isn't that interesting? Yeah. Yeah. So we had these, we had these adjustments I needed to make. And I told Kelly one day I said listen, Arden's like her settings on her loop are so messed up at this point, because I was adjusting slowly like I would in a normal situation. And everything just got out of whack. I said, I'm going back to zero. And I'm going to start over again, I'm going to put her at one basil rate, and one ISF you know, and I'm just gonna Yeah, word. And in that moment, I messaged Kenny, and I said, and he and I don't talk super frequently or anything like that. I told him I was doing that. He's like, oh, let me watch your nightscout. So I can say and I was like, Alright, so I, you know, I gave him that. And we've been together, you know, like for the last week and a half or so making these like adjustments. And Kenny showing me about how he's thinks about loop. And it's was different than the way I thought about so whether I end up doing what he does, or with the settings or doing what I do, or what I've been doing in the past. It's just really interesting to see different ideas about how to make the settings work and how to handle basil and things like that. Yeah, so yeah, I thought for a while now. And last night, he and I talked for like an hour, it was the first time we'd actually spoken. We've done all this through messaging. And it struck me just what you just said, he's explaining something. And it to me seems so technical, that I struggle to understand what he's saying sometimes. But he's just he understands it intrinsically just, it's he's more of a math person. He's working off of the numbers. And then I say something that's just painting with pictures, you know, I'm like, does that mean this and I say something ridiculous. And he goes, Yeah, that's the same idea. And I was like, Okay, great. But I can't understand his numbers. And I don't think he ever could have come up with the picture gram that my brain made when he was talking.

Beth 33:02
Yeah, I've got a similar situation in the, the lady who helped me to build the loop. So she sort of talked me through it until two o'clock in the morning, she lives in West Wales, which is about 75 miles away. And she built the loop. And she's been using it for two years. But she talked me through it. And she's just like, some kind of mathematical genius, where she just knows exactly what to change when and her daughter's HB ones are just amazing. But I know and I work with figures day in day out, but I just haven't got the brain that she's got. I need just need to do things differently tweaks here and there. But she just seems to know, we're just by looking at a graph. And looking at my son's graph, what I need to change. And I find that incredibly clever. And I wish I could do it.

Scott Benner 33:47
Well, what I think is that there's there needs to be people need to remember when I say people, I mean, I mean pump companies, and they're in a weird position because their FDA mandate does not let them know flip switches on your pump and say turn this up or turn this down, they can tell you, this is what this setting does. This is what this setting does. Now you're off to go talk to your doctor and figure it out. Except, you know, if you talk to them, you realize that they're worried because doctors aren't going to know how to do that. And there's an entire year you may have heard Jenny talking about it a couple of months ago, she was at a an event where she was talking to clinicians and explaining them how to set up the an algorithm pump because they don't know either. So we're stuck in this weird thing where you have this device that does such a great job. And I think whether it's going to be the base like you from tandem or it's going to be horizon on the pod, I think they're all going to do a really good job for people. But no one's there to tell you a little more a little less now and the people who understand it are the math people and with due respect, they're sometimes the worst at explaining things to Yeah, yeah, they do. Yeah, it

Beth 35:04
is similar because I gave a talk, come back a beginning of the year, I can't remember where now we seem to have been in lockdown for God knows how long. But yeah, I gave a talk at the start of the year to where they asked me to go and give a talk on loop into a number of health professionals from all over Wales. And one of the consultants came on to me at the end and said, you know, do you want to come and work for me, because I just don't understand. I'm supporting these families on on the on this loop. But obviously, it's not approved. So I can't make decisions on what to change. And I look at the graph, and I because I've never been shown how to set this up, I'm in no position to help them. And I couldn't really give him an answer, because I said, well, you're not going to be able to have them in that way. Because if you don't understand how the loop works, you're not going to be able to give them advice on that is a really difficult position to be in. And I think, personally, from my own point of view is if you're going to set your child up on that kind of system, I've had to learn how to manage that and how to tweak things myself with a bit of help from others. But if I go into clinic, I only go to clinic now to get here to be one, you know, they don't change anything, they don't look at anything. They just do as HB one say amazing his level of grip Off you go see you in three months. And it's difficult for I think health professionals to support you with something that's not medically approved at the moment. So of course, it is a bit of a stranger. And really,

Scott Benner 36:27
you know what, when I hear you say that about I really only go in probably for your you know, to get the the a one See, I'm starting to think that I wonder how many people are going to go to telemedicine on with diabetes, because you really don't. There's so much data coming back and so many apps that can tell you really within reasonable accuracy, which anyone say is that, you know, do you need that draw all the time to tell you?

Beth 36:57
Well, that's a good point here. I mean, we don't pay for health care here, obviously. But you know, I can understand if somebody is paying and traveling across the country to go and get blood drawn. And I'm thinking well, you know how you're doing, you know, from the data from your, from your nightscout from your loop, you can run reports in nightscout to tell where you're here to be one r is. So yeah, I mean, we go just to sort of catch up with them. And I do like to get the HV when results. But as I say, you know, we I know what it's going to be roughly before I go there, and it's normally pretty close.

Scott Benner 37:30
Yeah, that's how I feel to that we play a game the Yeah, the nurse practitioners like what's it going to be? And I tell her, and she goes, Okay, and then she pulls away branches it is and I'm like, great. Yeah, we're done. Yeah, you know, but then I need to get prescriptions written. But you don't need that right?

Beth 37:45
No, no. Yeah. Well, where are we kind of do it. We've been funding the Dexcom since 2017, January 2017, up until January this year, so three years, we were funding that ourselves 100% because we didn't have funding from the hospital. But they I put an application in beginning of the year as evidence in the fact that how has helped with this HB one and Finn plays rugby. So he's very active. And so they've they've now agreed to fund that for us. So that is fully funded, but it just gets sent to us every three months. So

Scott Benner 38:19
well the islands got so much more money now that Megan and Harry left, right, so Yeah, exactly.

Unknown Speaker 38:23
that a little bit.

Scott Benner 38:25
I think that's Yeah.

Beth 38:26
But it's quite straightforward. You know, we ring up the pump company, for pump supplies whenever we need them, they get sent to the door. And then our Dexcom guests sent on an automated basis every three months. So the only thing we need to go to the pharmacy for the insulin and the testing strips, but to be honest, I very rarely use testing strips these days.

Scott Benner 38:46
You know, I have to say we don't test a ton with but there are days when you test more than others. Like you'll you'll not test for a couple of days in a row. And then all of a sudden you'll be like I need to know this is 100% right or you know there's a CGM change somewhere the end of us yeah sometimes it's interesting to have you know, you need that you need that great meter when you need it. Just not Yeah, not constantly like you used to if you have you know, if you have Dexcom honestly, the version of Libra that exists now, from what I understand isn't I think you'd still want to be testing if you're using that.

Beth 39:21
Yeah, right. We use the Libra for two years I think before we switch to Dexcom and it wasn't the best accuracy wise for me. I mean, I know other people find it amazing some people are looping with it but I always found say is you know it was always like five or six points which to us is a lot in millimoles Hello higher than what the actual blood reading was and it would over exaggerate highs and lows. I didn't know if he was in range. It was pretty good but anything out of that sort of tiny range. It was never that accurate dress really

Scott Benner 39:56
for people listening earlier. Viewing said Did you know there was a blood sugar of 18? Which would have been 325? And yeah, being the difference between, you know, five points off of an 18 would be what? 325 to probably around 225. It's like 100 points. Yeah, yeah, yeah. Yeah. So I really have to make up one of these charts and just put it on the web, you know, so people I know, it's so hard. I hear there are people who are listening, they have it on paper, and they hear someone with an accent and then they run around grabbing their

Beth 40:29
shirt. Yeah, I do that. I do that because obviously if the other way for me, so when they mentioned in like three to five, I'm like, right. Okay, divide that by this and last millimole. But, yeah, it's the same year Really?

Scott Benner 40:39
Well, I'm gonna make up a chart somewhere that people can download and print out and it'll, yeah, would you want it wallet size or for tabletop? Anyway, we'll figure

you know, you you guys went through a lot of different versions of of care. And, you know, landed eventually with Dexcom. And then and looping. Yeah, I know that this seems weird. But just very quickly, for people who have just stumbled into this episode, at the moment, in May of 2020. The Loop algorithm is an app you download from the internet, it's not made by a company, it's not approved by the FDA, there are some really brilliant people who have written it and continue to update it and make it work. Arden is using it at the moment and with with relative success. And it just makes decisions for you about insulin. Now, there are different versions of it. And there's the master version, which I guess is the the main one right now. And then there's one called Do they still call it pizza branch that actually does Auto bolusing? Do you use the auto bolusing? version or use? No,

Beth 41:57
I we're not actually on loop. We're using the Android version. Okay. So we're on what's called Android APS. So this is something that's been specifically written for Android phones rather than the iPhone or the Apple product.

Scott Benner 42:11
Oh, so you're that's interesting. So you're not actually using the loop algorithm. You're using the the APS the other? Yes. Yeah. Call it loop. Because that's, I guess that's a more

Beth 42:21
Yeah, I call it like a closed loop. DIY. Closed loop is what I call it a people who don't really know what Android APS would be.

Scott Benner 42:28
That's super interesting. So is yours, the one that was made by the woman who was on the show years ago? Um, Dana. Yeah. Yeah. Yeah. Okay. So Dana came on years ago, and was like, I wrote this program, and it keeps my blood sugar state. And I was like, get out of here. And she told me Oh, yeah. And yeah, okay. So, technically, APS is the one you're using is also made by a lovely person who's not a company and it hasn't been FDA approved. There's also one called loop. But the idea of closing the loop or a closed loop system, so that's how you refer to it. Yeah. Yeah. Sorry. No, no, don't be sorry. That's that. I just want to make sure I understand. Yeah. Oh, that's excellent. And you find the same kind of is the saturation in England more APS then loop among people who are using?

Beth 43:22
I don't know, actually, no, I think there's quite a lot of people using loop as well. And I think for me, obviously, we just went for it. Because he's used to Android, his actual phone that he uses to sort of talk to his friends, etc, is an iPhone. But it was just the I knew a lot of people that were using this current algorithm. And so that's how I just bought like a cheap Android phones that is so that is something that he doesn't need to touch that is literally carried around with him, but he's got his own phone. And then for his sort of socializing with his friends, I think that's quite important.

Scott Benner 44:00
I'm wondering how APS works, is it? Is it mostly manipulation of basil and meal insulin, or does it Bolus on its own?

Beth 44:08
Well, there's like there's sort of this three different algorithms that you can choose, and you've got to build it in Android Studio, and then build the APK and download it onto the phone. And then you have to go through a number of objectives over a period of six weeks when you first start to prove that you understand how it all works. And then once you get to the end of that six weeks, you get the most, the most sophisticated system, which is the SMB, which is the micro boluses. So there's a mixture of temporary bezels on and off, they also then provide like tiny little bonuses as well. So the system will give micro policies as well as changing the basil. And that's when we've seen the best results. So if we did something for example, say he's having 50 grams of carbs over three hours, it will do a mixture of the temporary Basal and we'll give these tiny micro Bolus is they'll say For the next three hours, and then we'll just give tiny naught point two or 0.3 is not point fives you know, as and when they see fit based on the trend of the algorithm. That's your a little soft. Your voice got softer.

Scott Benner 45:09
Did you? Oh, sorry. No, they're better. Yeah, just yeah. Get on that microphone. Because Because you're doing knots. And they're my favorite part of anytime somebody from from your part. Because that's all I'm so sorry that you just got really soft for a second. I couldn't hear you. And I didn't know. Okay, sorry. No, no. So, so I think the same thing, by the way, we see the best results with an auto Bolus, because it happens more quickly, then. Yeah, then ramping up Basal insulin. Yeah, right. It's interesting, though. Now, you know, you're never gonna run into this, but loop for Arden, away from her period. So away from hormonal things loop is like magical for Arden. And then it's certain times of the month, it the settings are just not right to handle what's going on with her. And it's more around food than it is around just basil. So you have to be a little more agile, I have to be a little more agile around those times of the month. And so that's a

Beth 46:16
and I haven't got that lovely stage of hormones yet. I'm sure I'll enjoy it when it arrived. Oh, yeah. Yeah. I'm hoping it's not so bad with boys. But who knows?

Scott Benner 46:27
When I hear from parents of teenage boys is that what happens most of them is just sort of when it goes wrong, it ends up being like, it's fine, I got it. And it's not fine. And they don't got it. So

Beth 46:41
yeah, with the other thing that we've got with, which was the other reason I chose this version, I'm not I'm not that familiar with loops, this may have been a similar thing. But with the Android version, I've got an actual app on my phone, because I obviously it was an Android phone called nightscout client. And so I can actually change his profile, or give him gum, enter carb. So the loop activates from my phone, if even if I'm nowhere near him. So if for example, he was in school prior to lockdown when he was going to school, and I was in work, if I could see that he was getting a bit high in the loop wasn't being as aggressive as now, I can just add into my phone, 10 grams of carbs. And that would then give him a little bit more insulin to bring him down. Yeah. So because he's he was quite young. And I wanted to be able to have that sort of option. And there's there's also text messaging, sort of Bolus is that you can give as well, which are all password protected, and you won't have to enter a PIN. I think for a younger child, I felt like this, this gave me a little bit more control from being remotely in, in work, and he's in school. But again, you know, as he's getting older, he's predominantly doing everything himself. And so I just think for people with the like, sort of young, young children, it is quite beneficial. But as I say, we're trying to encourage him now to make a lot of those decisions himself, and he is getting made, and he is quite, you know, he's very responsible to be fair to him

Scott Benner 48:09
right now. So it's a lot to learn, and it takes a long time for them to absorb it all. I don't, you know, I wish I had Arden really understood, you know, when we were doing what I talked about on the podcast, and you know, bumping and being which I use versions of that with with loop two, but when we were doing all that she really started getting it. And I was like, oh, wow, this is great. And then you know, someone said try loop and just so you can try it. And I have to admit, when we first started doing it, I thought this might just be something I need to understand for the podcast. And why not try something new? Yeah. And and now I think, no, I think algorithms are, are the way we're gonna go. You know, moving forward, I am genuinely interested in Omni pods for a couple of reasons. Maybe the biggest one. When horizon comes out, the algorithm will live right on the pod, which may not seem like a big deal to people. But when you're looping, you have a phone, and then a bridge. They call it a Riley link. Arden calls it the thing, right? And so the phone needs to be near the thing that needs to be near the pump. And then that the end and the minute you wander too far away from one of those things. The loop, you know, isn't doing what it's supposed to do. Yeah. When I guess on the pod, you know, was developing their thing. They decided like printed on the circuit board, I guess of every pod is the algorithm. So you don't need to be near your phone for the algorithm to keep working. That's exciting. Yeah. Like Yeah, I'm really, really super hopeful about that. I'm looking to be I think the COVID-19 pushed it back a little bit. They were saying the end of this year, but now I think they're saying the beginning of next.

Beth 49:57
Right. Okay, so that's the end The thing we don't need any any extra software with the with the Android version, so he literally just has the phone. But because he has the extra foreigners Well, he still has to carry the tool. But when he's at school, he's got sort of like a, you know, like a spy Bell type of thing that people were to go run and he just where's that, where's the extra phone in his belt and obviously leaves his iPhone at home. So he doesn't have any he's just got to watch them so he can he can actually ball us from his watch with this APS system. So you can actually enter the carbs into his watch and the watch will deliver the ball. So I think when he goes to high school in September, he doesn't actually do it on the water at the moment because his friends are so used to see us do it all he just gets the fall now, I think maybe when he goes to high school and and he's like a little fish in a big pond, he won't want the attention on him. So I'm hoping that he will sort of valid he will see that as a benefit. Maybe then

Scott Benner 50:50
yeah, of whatever makes them comfortable, I guess. And you know, yeah, he doesn't care about doing it in front of people, then.

Beth 50:57
You don't care about anything. He's the most chilled to that child you'll ever meet. And the happiest honestly. He can teach me a few things. He's just nothing ever gets him down. He's incredible.

Scott Benner 51:08
Excellent. That's really cool. Hey, listen, this is off to the side. But you guys be nice to Adele. Because she looks great. And I'm afraid people are gonna give her trouble for losing weight. And I think that's ridiculous. But I just wanted to be able to sing still. Is that how

Beth 51:22
you feel? I'd like to look like Adele. Yeah, right. Well, my time just growing by the day in lockdown, because I'm just drinking more wine, and having more barbecues and eating more chocolate are not going anywhere. So yeah,

Scott Benner 51:33
chocolate has been my problem. And and I I have not said it out loud. Anybody but I went to bed last night I thought, huh. 36 hour water fast? I'm not. I'm not eating anything tomorrow.

Beth 51:46
Yeah, it's just so I think we'd allow to for daily exercise as part of the lockdown rules. But I think our where we live at the moment, has got the highest rate of COVID infections in the UK. And that's terrifies me. So at the moment, we just stick into the garden. And we're not going anywhere. So I haven't been out for any kind of exercise for about six weeks. So yeah, it's not, it's not great. And I'm drinking wine. And we have a zoom quiz on Friday night and a zoom quiz on a Saturday night. And yeah, and then we've eaten cheese and crackers. It's like 12 o'clock in the night. It's just, you know, I'm going to come out today looking like Dell did before. Not after,

Scott Benner 52:27
this is a zoom quiz code for reason to drink wine.

Beth 52:32
Yeah, no waste. Kay is great. Because we meet up with like, my husband's side of the family and my husband's got older children as well. So we all have a quiz on a Friday and then on a Saturday night is sort of my mother, my auntie, my cousins and, and probably see more of my family and friends now than than I did before. So um, yeah, you know, you got to make the best out of you.

Scott Benner 52:52
Yeah, I don't, there's nothing else to do. My son just finished college the other day from home,

Beth 52:56
you know, out of his bedroom, which I think yeah, it's quite sad, really. But he's, you said it knock domain at the moment. Oh,

Scott Benner 53:03
oh, yeah. Yeah, we're, our restrictions are on, I think, at least till the middle of June. And so I have to be honest, I'm not looking to go back. Like, I don't want to be one of the first people that runs outside. No, no, me.

Beth 53:17
I'm quite happy in my little bubble here. I'm that no, I have no confidence at the moment in the way the government are running anything here. And I don't trust anything they say. And so I'm not going to be part of the little experiment, shall we say?

Scott Benner 53:30
Yeah, yeah. Well, you've got you've got the he looks like the cold miser from that might be a reference you don't get but there's an old christmas cartoon and your guy's hair looks like

Beth 53:41
well, we need a mass at the moment because obviously the United Kingdom is Wales, Scotland, England and Ireland and Wales, Scotland and Ireland have decided to do something different to England because they don't agree with lift near as soon as he is. And so there's so many mixed messages. Now everybody can do different things, and it's just a mess. So I'm just staying in eating and drinking.

Scott Benner 54:01
Dammit, I'm gonna kill myself. I'm not gonna kill me. Yeah, I just gonna die of overeating instead. I'll take care of this on my own. I don't need your help. How did the kids handle being inside? And is it seen?

Beth 54:16
Um, my oldest son is struggling more I think he's, they both play a lot of sport. And so they're missing that because obviously, it would be training two or three times a week playing every Sunday. Obviously, that hasn't happened known since since the middle of March. My oldest son has been going for a run now and again, but I'm just like a nervous wreck until he gets back but I'm allowing him to go. To be honest, Finn has been pretty good as he turned 11 in lockdown, so he didn't see any of his family and friends really other than people standing in the garden. So please took it all in the chimney or we had the big buffet for his birthday. And then we had a barbecue at the garden in the evening and they pretty good. I mean, they've got The ps4, so we speak into his friends on there every day. And I think whilst there can be something you resent on occasions, at the current moment in time is definitely needed for them to keep in contact with each other. And they get in work set by the teachers via either Microsoft Teams or Google classrooms. And so, you know, I can't say they're doing a huge amount of work, but they do and whatever set. So yeah, it's just just become kind of normal. So quickly, you know, you just think that when he first gets announced, it's just like a shock to the system. But now it's the new normal. And I can't imagine going back to before

Scott Benner 55:33
Yeah, it is interesting how quickly you can adapt to something like this. Yeah, we had just something we refinanced our mortgage because the rates got really good. And I was like, Alright, well, I'll take less money out. Yeah, like, you know, so a notary Republic showed up at our house yesterday. And we had to sign a bunch of paperwork. And you know, she's got gloves on and a mask, and she comes into the house and we sit at a table and I disinfected the table. I joked when she came in, I said, I've used this table for stuff like this in the past, I've never disinfected it. I've always wiped it off. Never thoughtfully killed the germs on it before, you know, and and we signed the paperwork. And she left and I said to my wife, isn't that strange? We'll never know what she looked like. Yeah, like, I'll never if I saw that woman tomorrow would know it was her. And it was that I found kind of interesting and odd. Yeah. But I was struck by how I didn't sit there the whole time. And think that lady's wearing a mask and gloves. They could didn't

Beth 56:32
Yeah, it's just become so normal.

Scott Benner 56:34
Yeah. I don't know, though about. So art, and we're gonna finish up in a few minutes. But Arden said something to me, we had to go. She did get an X ray, which ended up being negative during this whole thing. And it was the one time she was out of the house. She's, you know, in a waiting room with me waiting her turn, and she's got a mask on, I have my face covered. And, and she just says, Is this how it's gonna be? You know, from now on? And I said, I don't think so I said, I think maybe one day we'll transition to, like, maybe this will make Americans think, you know what, when I'm sick, I'll cover my face when I go in public, like sort of like they do in China already. You know, like if your cover your face. And I said, that might not be a bad thing. I said, but I don't imagine it's gonna go forever. I said, I think we'll, you know, this will change at some point. And I said, Why? And she said, is it bothering you? And she goes, I just don't like, what's the point? And she's like, we can't see anybody. Nobody's interacting. Everybody looks scared. She's like, what are we doing? And I was like, You mean, like, this isn't living? And she said, Yeah, like that. This doesn't feel like being alive. And I was like, Yeah, that's a good point. So um, you know it. I'm interested to see what's going to happen for sure.

Beth 57:48
Yeah, I know, we're supposed to be coming to Florida in October. We booked 60 nights in a villa in Orlando. And we've booked all the park tickets and we're going to Discovery Cove on Halloween. And well, obviously, none of that's gonna happen now. So right. And that's my foot myself my 40th birthday. So I'm quite mad. Really. I've, we've, at the moment, we've lost about six holidays this year, because we'd plan so much because it was my 40th birthday. And yeah, so we're gone to part. So we are, we don't say from Well, that's the main thing.

Scott Benner 58:20
100% we don't vacation much at all. And so and we stopped, we were going to do one a couple of years ago that we didn't because we're like, you know, we're gonna do instead, my son graduates college The same year, my daughter graduates from high school, that's when we'll go away. And so we're planning towards that. And you know, it's still a couple of it's a year or two off, but you're still like, oh, like is that is the whole world?

Beth 58:42
Yeah, I know. So, you know, it's and it's like my cousin was supposed to have got married last Saturday. And we literally went on the hen weekend on the 13th of March. And everything was fine. It was just carry on as normal. And we got back on the 16th. And it was like, stay in, don't go out, lock down. And it was all of a sudden, just complete, you will just change overnight. And now and and I remember we were on that hammock and she was saying I'm worried about my wedding is ridiculous. You're not going to call the wedding off. And of course, the dead you know, that wedding didn't happen on Saturday. And that was been delayed until October. And now we're even thinking is that gonna happen?

Scott Benner 59:18
We were right in Florida. My son was playing baseball, right as this was going on. And I remember a mother looking at me and going, this isn't going to be a big deal. Right? And I said, it sounds like a big deal to me. You're like, you know, like, I'm like, have you been listening to the news and paying a little bit attention to like the direction it seems like things are going and she's like, no, but this is silly. And I was like I don't think so. I said I don't think they're gonna let the kids go back to school.

Beth 59:42
Or your school's definitely close until September or August to see you go back.

Scott Benner 59:47
Yeah, I don't the my daughter's not going to end up back in high school like that's she's going to finish the year out like this, his college years over already. And now we're just hoping you know, for us personally, Cole's hoping that he gets It's a play. He's in a collegiate baseball league in the summer. And he's hoping they actually play. And you know, then everyone's hoping they're going to go back to school. There's a lot of college kids here in America talking about if, if distance learning happens again next semester, they're going to take a semester off, they're not even going to go back and do it.

Unknown Speaker 1:00:17
Yeah. So

Beth 1:00:18
they talking about you Now, obviously, finish in what we call your sick. So that's the last year before they go to hate the way you would call High School. And they talking about that you group are being allowed to go back for the last three or four weeks of term. I just don't, I don't understand. I don't understand what you know, they say no, you know, they need to transition and they need to see their friends and I'm a governor in fin school with. So I was speaking to the head this week. And, and he said, it's not going to be the same experience. If they come back or four weeks, we can have like five in each class, you know, they're going to be he's got staff that are extremely vulnerable and who can't come back to school. They're not going to have a normal teacher. They're all going to be split up. It's not going to be like they're happy. Oh, here we go by experience that they thought they were going to get whatever happens. And so I just think is taking unnecessary risk. And and I'll be honest, I don't think I'd be sending Finn back even if the schools do reopen, because they've already said the key and won't be going back to school. So he's your name, which is three years old. Three years older in high school. I don't send he wasn't, he won't be gone back.

Scott Benner 1:01:22
Yeah, I don't see it now. Arden's like she loves this. I think she's gonna fight us back home back next year.

Beth 1:01:27
Yeah, yeah, I gotta be honest, I think finished sort of happy enough. He's not bothered about going back as in is the first thing he said, when I said, Look, you know, you may not go back to school this year. And he said, Ah, at least I won't have to do the test. Because we do these big tests before they go to high school. That's all he could focus on was, you know, the positive, which is him all over. Whereas I think pn is Miss missing the social side of school, and I'm seeing his friends in that type of environment. But

Scott Benner 1:01:56
it is what it is Arden likes to she gets done. And then she comes upstairs, she doesn't work out in a rooms takes shower, like she seems like she's living a great life, all of a sudden, her stress is obviously lower because her insulin needs are down so far during the day. Yeah, her Basal insulin went from near two units an hour to one unit an hour.

Beth 1:02:17
Really, it's crazy, because his has gone through the roof. And his not so much is basil. But he's actually Bolus and his carb ratios have decreased massively. And I think it's because he was so active before. So he was doing sports or two, three or four times a week. And he was obviously out out in the schoolyard running around three or four times a day. And now he's just not doing anything. So yeah, it's it's more than the Bolus that we've had to sort of increase the insulin for but you know, it's working and his levels have been, it's been really good. So

Scott Benner 1:02:53
well, you can use the right amount of insulin, but people will kind of incorrectly think of that as insulin resistance where it's not insulin resistance, it's that the activity isn't Yeah, isn't bringing his blood sugar down in different areas. Yeah, yeah, it's interest. So

Beth 1:03:06
we spent the last two weeks we've got builders out the garden at the moment, social distancing, because we just figured, like we've got, we've got six holidays that have been canceled this year, like just UK breaks, rather than the big one to Florida. And we thinking, well, we're staying in, we've been safe. So we're going to get the garden done. So as of Friday, that should be finished. And he's got a 12 foot by six foot football goal waiting to go up. And so I'd be locking him up there a couple of hours a day to get some extra to get some exercise.

Scott Benner 1:03:34
Quiz go outside. That's great. I really appreciate you doing this. We miss anything that you were hoping to talk about?

Beth 1:03:44
No, I don't think so. I think it was just sort of, you know, when when Finn first got diagnosed, I couldn't see a way out. And I think I felt so low that if somebody had told me then what I would have achieved technology wise now and why and how happy and healthy he would be? I would never believe that. And I think it's just, it's nice for people who've just been through what I went through at that point in time. If they feeling low, there is light at the end of the tunnel. And it's not, it's never going to be as bad as you think it's going to be thinking life is over. And you think I see so many desperate posts from people whose children have just been diagnosed and it makes me so sad because I know exactly how they feel. And they just wish that they could see you know that things do get better and it does become the new normal. And you know, I always say that it is life after the type one diagnosis is nail

Scott Benner 1:04:34
Yeah, I just I like to say that. While diabetes doesn't ever get easier, you get so much better at it that it sometimes feels easy. And then yeah, that's the same thing. It's you know, one day you'll just you'll gather up so much experience that you'll look at blood sugar and just know what to do. I somebody was asking me yesterday about they saw some app or I forget what it was and you you know you ask it you say I'm having an apple And it says, based on your, you know, your activity today and bah, bah, bah, like, give yourself this much insulin for the app. And I'm like, Yeah, I don't like.

Beth 1:05:07
Yeah, I know. I think I think that's one of the things from using this API system is this so much more to it than that there's so much more to it than how much carbs is in that Apple. You know, it's only because the Bolus insane you've got on board the Basal and then you've got on board the carbs you still got on board is so much more to think about what your human brain can't compute every minute of every day when we've got our own jobs to do and lives lead and, and I think it's just incredibly clever. And I'm so grateful to the people who have created it and, and then allowing people to use it free of charge. You know, if somebody had told me this would be available 10 years ago, I definitely wouldn't have been such as psychopath at the time. But yeah, it's it's changed our lives and and I sleep every night. I mean, since we'd be looping, I'd say I've got up since last August, I've probably got up around 20 times at night. Whereas I was up every single night for seven and a half years and I think the sleep is just I forgot what it was like

Scott Benner 1:06:11
yeah, it's wonderful. It changes your life

Beth 1:06:13
dad haven't done anything that has changed my life. No, because you saw a reasonable when you're tired and and things get on your nerves more and you get stroppy with people and you know, I'm not saying I'm not stopping my husband would definitely still agree that I am but you know, you feel so much better when you've had a good night's sleep and can't put it into words how much of a difference that made you say it's part of my,

Scott Benner 1:06:35
when I speak in public The last thing I say to people is you have to you have to find a way to sleep or this is all going to fall apart. I don't care how much you understand how to use this insulin. Yeah, listen, you may be mortified to find that. Up until 45 seconds ago, I didn't know what to call this episode. I was struggling I actually was gonna stop the recording and ask you to tell me like some colloquialism that I could like put on it. But just at the very end, you came up with it. This one's gonna be called a former psychopath. Just so you know. Yeah, that's good. I love it.

A huge thank you to one of today's sponsors, g Vogue glucagon, find out more about chivo hypo pen at G Vogue glucagon.com forward slash juicebox. you spell that g VOKEGL. UC ag o n.com. forward slash juicebox. I'd also like to thank the Dexcom g six continuous glucose monitor for sponsoring this episode. Head over to dexcom.com forward slash juice box to learn more where to get started today. And of course, thank you so much to Beth, for sharing her story. I'll be back soon with another episode of the Juicebox Podcast.

It is super simple to support the show, subscribe in a podcast app, listen to the show. share it with others. That's it. That's all I really need from you. And I'll be able to keep this going. And going and going and go share subscribe, share and subscribe. Share Subscribe, that's it. There's nothing else for you to do. I mean you can leave a great review somewhere where you're listening if you want like a really well thought out one not just like I love this podcast but like five stars. First of all, like I love it so much. That's what the star say. And then boom, you're in there with a heartfelt review which helps the next person who sees the review. Say yeah, I might give this thing a shot. Okay, review. Well, it's not just a review, amazing review, share and subscribe. If you can do that. I can do the rest

#488 Say That One More Time

Sarah is pregnant and has type 1 diabetes

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends and welcome to Episode 488 of the Juicebox Podcast.

On this episode of the podcast, we're gonna be talking with Sarah, she recorded this while she was pregnant. She has since had the baby. And I'll tell you a little update about that at the end of the episode. This one's interesting because I recorded it twice, you'll, you'll see what I mean. I'll explain the whole thing in a second. Sarah is terrific. You're going to love this. Let's just get started. Nothing you hear on the Juicebox Podcast. This is something you should remember. By the way, please remember, let's say it like that. Let's say 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 are becoming bold with insulin.

This show is sponsored today by the glucagon that my daughter carries g vo hypo Penn Find out more at G Vogue glucagon.com forward slash juicebox. The show is also sponsored by touched by type one, check them out at touched by type one.org. And by the Omni pod. Now you can go to Omni pod.com forward slash juicebox. To find out if you're eligible for a free 30 day trial of the Omni pod dash. It's pretty cool. Head over, take a look. links in the show notes, links at Juicebox Podcast comm or you just go to omnipod.com forward slash juicebox. Let's start here by saying that you are one of the few people who I've interviewed and then somehow screwed over your file just didn't work. So we're doing this again. But you have big news since we talked last time. So we're just going to just talk over and the great news for you is I speak to so many people. I fundamentally don't know what we spoke about the first time so this is going to just be like brand new to me.

Sarah 2:45
It sounds good. Do you want to turn off video or you want to keep it on?

Scott Benner 2:48
If you're alright with I can keep it on? I just don't have a lot of light in here. So I like

Unknown Speaker 2:51
it because then I don't interrupt you.

Scott Benner 2:53
Oh cool. Well, let me see if I can just turn it on.

Sarah 2:56
I can see you. I'm gonna mute myself go to blow my nose because that's rude.

Scott Benner 3:03
Sarah is now blowing her nose. She is finished.

Unknown Speaker 3:07
Oh, I didn't realize you were recording.

Scott Benner 3:09
Oh, no, I've been recording the entire time. So Introduce yourself.

Sarah 3:17
So my name is Sarah. I live in Denver area of Colorado. I'm 27 and change. I'm a graduate student at a university in Colorado. I'm a type one diabetic, sort of. And I am 25 weeks pregnant. Whoo.

Scott Benner 3:35
Congratulations. With a baby. I'm assuming we're going to name Scott. Is that right?

Sarah 3:41
It's a human. I do not know the sex.

Scott Benner 3:44
But listen, I don't know what Scott is works. I think it's a gender neutral name.

Sarah 3:52
Yeah, that's awesome names picked out but

Unknown Speaker 3:55
not Scott.

Unknown Speaker 3:57
No.

Scott Benner 3:59
But of course you won't. It's like it's such a short kind of Curt name doesn't feel I don't love it as a first name. So anyway, and I don't expect you to name your baby after

Sarah 4:17
playing with family names,

Scott Benner 4:19
are you so you are related to people who are worthy of their names moving into the future?

Sarah 4:26
Just the first letter so my mother in law has brain cancer. So the middle names for both sexes that we've come up with start with the first letter of her first name.

Scott Benner 4:35
That's very nice of you. Excellent. Yeah. Okay. So tell me something you just said I have type one diabetes, sort of what does that mean?

Sarah 4:42
So I was technically diagnosed with Lada latent autoimmune diabetes in adults when I was 26, so last March. I identify as a type one but I know that the medical community has issues with that occasionally.

Scott Benner 4:58
really well. Do You Do you know why?

Sarah 5:02
Um, yeah. So I think it stems from the origins of Type One Diabetes being juvenile diabetes, which in all honesty didn't make any sense anyway, because juvenile people grow up.

Scott Benner 5:16
Yeah, that's the goal. Right? So yeah, you know, it's funny that how many things we say or do because that's just the way it is, or something like that. So you have you actually bumped into somebody who's like, like, been like, Oh, that's not good usage, because you were diagnosed later.

Sarah 5:35
Yeah. So I mean, on all my charts, I'm a type one I identify as a type one. It's just my initial diagnosis was Lata. But people sometimes think it's part of type two, which it's, have you done your pro episode with Jenny about it yet?

Scott Benner 5:51
Not yet? No.

Sarah 5:52
Okay. Yeah. So my understanding, I'm not a doctor, but I feel like we all should have honorary endod degrees, to be honest. But my understanding is that it's a slower progressing form of type one. So it's still an autoimmune that attacks your pancreas. It's just slower than say, Arden, or children who have it pretty rapidly. onset

Scott Benner 6:15
just comes on pretty quickly. And and you have it, so it's not exactly like a long honeymoon. Where they don't about it that way, I think

Sarah 6:23
can be when you just depending on when you diagnose it.

Scott Benner 6:28
Yeah, yeah. Right. Well, how did it how early Do you think you caught it? And what was your I mean, forget what people say, what was your experience?

Sarah 6:36
Yeah, mine is a little funny. So when I was 15, I swear I'm gonna answer your question. But when I was 15, I had stomach issues. So I saw stomach Doctor Who thought I just had acid reflux, and for four years I was on a marathon or whatever it's called Nexium, whatever. And I felt horrible. So I finally decided to do something about it and went gluten free and felt way better. So then I saw different stomach Doctor Who diagnosed me with celiac. And then after my mother in law was diagnosed with brain cancer, I was stressed and traumatized and x y&z and I was diagnosed with hashimotos. This was when I was how old was I 25? Maybe. And then I went to an endocrinologist who ran antibody tests. And one of the antibody tests you ran was the GA d 65. If you're familiar,

Scott Benner 7:31
I'm not keep going.

Sarah 7:33
So that's one of the I don't clinically I can't tell you what that means. But I know that in layman's terms, it's if you come up positive, it means you're positive for type one of some sort. So we can test the antibodies through trial net, right? I think there's five of them. Yep. So jd 65 is a different one. I think. Don't quote me on that. But

Unknown Speaker 7:54
you're totally anybody. But I understand that you might not know for sure.

Sarah 7:57
No, I know. I'm not a doctor. But this podcast has no medical advice anyway. But anyway, I was really positive for jd 65. I think it's like under five is negative, and I was in the 1000s. And at the time, this was in California, she told me, you might develop type one later in life, just watch your agency. And I remember it being in the mid to high fives which was not diabetic, per se, but it was pre diabetic at points. And I've always been active and vegetarian and gluten free and it just didn't make sense. Anyway, fast forward, I moved to Colorado. I established a new endo for my hashimotos she was looking at my bloodwork and she goes you know you're type one, right? I said, Excuse me.

Scott Benner 8:43
Did you say do you know you have no bedside manner whatsoever? Right?

Unknown Speaker 8:47
I was like, what does that mean?

Sarah 8:50
So she stuck a libri on me for two weeks. I came back and they diagnosed me with Lada because I wasn't, you know in the 600 500 400 300 daily, but I would spike to the 250s occasionally, so that end up ended up being a dingdong. So I ended up switching to a new center, the Barbara Davis center in Denver, which is phenomenal. Yeah, I've heard they're phenomenal. And I walked in three months post diagnosis on a Dexcom no insulin, because the first endo refused to put me on insulin unless I was over 200 for three days straight.

Scott Benner 9:26
Really? Yeah. You wouldn't be over 200 for three days straight or you couldn't have any insulin.

Sarah 9:31
That was her textbook diagnosis. Yeah,

Scott Benner 9:34
this is the dodo you're saying? That ding dong, ding dong, ding dong. Ding Dong Dodo. Nice. Yeah. What's the difference? Well, what's, how was hashimotos explained to you? Like, why is that not hypothyroidism? Or like, I don't know all of you. You want to read together as

Sarah 9:54
well. So I know that it's one of the same. It's just one is the autoimmune so hashimotos means that my body attacks my thyroid. And they diagnosed it with antibodies to be a bloodwork and then an ultrasound to check for nodules, aka mini tumors, which I didn't have but one side of my thyroid was like double the size of the other something.

Scott Benner 10:14
So what I'm seeing here is inflammation of the thyroid causes a leak resulting in excess thyroid hormone, which puts you hyper over time the inflammation prevents the thyroid from producing enough hormone. hypo symptoms include fatigue and unexplained weight gain. It's funny that it says unexplained weight gain. Of course, it is explained by the hashimotos. A weird choice.

Sarah 10:38
Yeah, unexplained by lifestyle factors explained by the thyroid.

Scott Benner 10:42
Yeah, like you're just eating all normal and everything and gaining weight and you can't stop. Did any of that happened to you?

Sarah 10:48
Yeah. So, I mean, I was in the hospital, not for myself for my mother in law pretty frequently. So I wasn't totally taking care of myself. And I actually went to the ER, which with heart with chest pains, which now I know is a sign of high blood sugar for me. So I felt absolutely horrible. And nobody checked my blood sugar. It was all about the heart, my heart was fine. I'm assuming if someone had actually checked my blood sugar would have had a high blood sugar. So this was six months before the positive god 65. And then, like a year and change before my actual diagnosis,

Scott Benner 11:28
one time Arden's as she got bigger, so she was on Synthroid at the time, and she grew. And it just never occurred to us that as she got bigger, she'd need more Synthroid. And so she started having these incredibly low blood pressures. like she'd like, sit at the kitchen counter with her head down, just lay there, you know. And they jump, even though people knew she doctors knew she had hypothyroidism. They jumped right to like heart issues. And they put her through all these heart tests that she just flat out didn't need. And I kept saying, you know, after a couple of doctor's appointments, I was like, could this just be your thyroid, you know, and people are like, Oh, it's too severe and blah, blah, and like, so one day I just said to Kelly, I'm like, I'm just gonna give her more of it. I just I am it because if it works, we'll know soon. And if it doesn't work well, and she just like, she was like a flat. You ever seen a flower just like, not get enough water? And yeah, it's not dead. But you're like, this thing's gonna die in like two days, you know that you put water in it like the next day, you come out like, oh my god. Yep, that's exactly what happened to her. She just popped right back up again. I was like, That's amazing. And then I call the doctor. I was like, Well, guess what? I gave her more. And this work. Now you might want to be more specific about how much more she wants, because I just was like, and half a pill because I didn't. I kind of did it the way I do. And so I'm like, let's see if more helps. You know, it's a fascinating issue. All I knew was Oh, sorry. No, no God,

Sarah 13:01
when you procreate, the second you have a positive pregnancy tests, they increase your Synthroid or levothyroxine or whatever pill you're on. No

Scott Benner 13:09
kidding. Because Do you know why?

Sarah 13:14
not medically, but I know that it has something to do with the baby. I'm gonna

Scott Benner 13:17
find out find out when I do the thyroid episode, I'll make sure I ask.

Sarah 13:21
Yeah, that's like, one of the first things I did was increased my legal thyroxin or Synthroid okay.

Scott Benner 13:28
Yeah, that I ardent uses to dissent now, only because through the process of making sure we were doing the exact right thing for as best as we could. We found that tiersen doesn't have any fillers whatsoever. So not that, you know, but it didn't change anything. Like we went from Synthroid to tears. And it's not like she was suddenly like, I feel so much better. It just, this works just as well as the other and she's using it now. So but we've tried everything, we tried switching her insulin, to make sure she didn't have a sensitivity to like fillers in a pager, which she ended up not having. And because moving too fast, didn't change anything. Actually, it changed a lot about how insulin worked, which was really interesting, but I'm going to do another episode about that somewhere else. But um, but it didn't change anything. You know, when you're just sort of like you did it like you were like, I'll eat gluten free now and see what that does. So are you a vegetarian or vegan? Or how do you eat?

Sarah 14:22
lifelong vegetarian,

Scott Benner 14:23
vegetarian? Okay. Did your family raise you that way?

Sarah 14:27
Yeah, sort of my parents are both physicists. So we had a nanny growing up. And she was vegetarian.

Scott Benner 14:34
Which made you a vegetarian? Yeah. It's like, it's like when you hear somebody say, I watched Dancing with the Stars because my wife watches Dancing with the Stars. So I love it too. Because

Sarah 14:48
I'm married to a six Ford German guy, so he eats enough meat for the both of us.

Scott Benner 14:52
So do you not have there's no moral issue with you? It's just an eating style.

Sarah 14:59
No I love animals a lot. So like a lot a lot. I don't know why but I do. So I don't like the smell of it especially pregnant. I really don't like the smell of it.

Scott Benner 15:09
Okay with that protein and the kind of blood base that's in red meat especially yet not a pet you don't sit across from your husband going, you mother doing Thank you don't spend the whole time he's eating his cheeseburger wondering out loud what the cow would be doing with its life right now. If it wasn't for him, it isn't. It doesn't hate you like that?

Sarah 15:31
No Are my philosophies if they don't get mad at me for being vegetarian or tease me with me, then I won't do the same.

Scott Benner 15:39
I have a theory that everyone doesn't care so much about what other people do as much as the internet makes it feel like people care. You know? So yeah, I just think that if you if you if you feel that way, I think that's amazing. You know, if you were like, Look, I'm not gonna eat meat, because animals and I love them too much. And I can't do it. I think that makes 1,000,000% sense. And I think if you think I want a cheeseburger, I've grown up this way. And this is how I eat. I think that makes sense, too. So it's interesting that you guys are blended like that. Does he ever touch your vegetables?

Sarah 16:15
Actually, I don't cook my husband cooks.

Unknown Speaker 16:18
Oh, so you can't complain at all.

Sarah 16:20
So well, pregnant, you eat weird things anyway, but so when we moved to Colorado, he decided that our kitchen would be gluten free, which was really generous of him. Because I've celiac. Yeah. So he eats completely gluten free in the house. And then if he goes out not so much with COVID, but he'll eat gluten. But we just finished our basement so and we have like a fridge and a toaster oven down there. And that will be the gluten kitchen.

Scott Benner 16:49
Well, that's interesting. So a person who has no sensitivity to gluten at all, can not eat it. And he probably doesn't experience anything different than when he does eat it.

Sarah 16:58
No, but you know, we did 23andme because I'm from an egg donor, which is unrelated to all this. But anyway, I wanted to see if I could find any half siblings, which I did not. But um, oh, he has one of the two celiac genes and I have the other so the kids screwed.

Scott Benner 17:16
Hey, good. Can the baby hear me? Good news, buddy.

Sarah 17:20
Yeah, they're I think they're asleep. Right now. They were awake earlier.

Scott Benner 17:23
Oh, wait, hold on a second. You say they?

Unknown Speaker 17:27
Yeah.

Scott Benner 17:28
Like, is there like 12 of them in there? Oh,

Sarah 17:31
it's gender neutral.

Scott Benner 17:33
Oh, I was like, I wasn't sure if you were going with with pronoun there. Or if it was like, literally like two and I think I didn't think she was having twins. Okay. Yeah, you'd probably be bigger by now. You're in a super pale of super pale origin, too. So yeah, it's your hair red.

Sarah 17:52
Yeah, it's just Yeah, it is.

Scott Benner 17:54
Yeah. So are you more like Irish English, that kind of vibe.

Sarah 17:59
Um, so I'm from my father. And then I'm, I have a twin and then we're from an egg donor. And I did the 23andme. And I made my father do it to see what came up is and I know you're adopted. So yeah, it's actually might be interested. Interesting. But, um, I've concluded that the egg donor was 100% Ashkenazi Jewish, which does not actually mean anything ethnicity wise, but I've narrowed it down to that she was from Germany. But thank goodness and not really to my husband, because I was quite nervous.

Scott Benner 18:30
What do you think you would have done if it came back? And you were like, really close in line? Would you have been like, Look, you can stay as the cook, but we're not having sex anymore?

Sarah 18:38
I don't know. I don't know. I didn't want to think about it. Because it's a little scary.

Scott Benner 18:42
Creepy. Hey, the good news is if you stay married a little longer, you're not gonna have sex anymore anyway, so don't worry about

Sarah 18:48
Yeah, that's what I've heard.

Scott Benner 18:51
It won't matter. You'll just be like, I mean, he's a great cook. And I like him. He's nice to that kid. So it'll be fun. No,

Sarah 18:58
he's a really nice guy. I got really lucky.

Scott Benner 19:00
Yeah, good for you. That's excellent. I'm noticing I have more and more listeners in the Denver area. They're popping up more frequently. I don't know what's happening over there. But you people gotta you got to stop getting hype on TV. So much of Utah, Denver are like way on the rise for the for the show. It's interesting. I

Sarah 19:21
maybe it's because of Barbara Davis center is such a phenomenal.

Scott Benner 19:25
I think it's a share center. It's that people start sharing the podcast, and it grows that way. I don't think it has anything to do with people having diabetes in certain areas. Yeah, if I had that kind of power, then I'd be like, if someone gets diabetes, they just immediately listen to the podcast. That would be that's another level, then you would actually hear ego from me. Just so you know. I'd be like, I'm all powerful, but no, I just think some nice people are passing the show around. So you haven't had diabetes for very long at all. How long? Tell me again, how long you had a thyroid issue? When was that diagnosed again? You're

Sarah 20:02
about a year before the diabetes, so about two and a half years,

Scott Benner 20:05
but you live for four years thinking you had reflux

Sarah 20:09
15 to 19, aged 15 to 19. I, I didn't think I had reflux because the next team did nothing but someone diagnosed me with bird. Okay, gastrointest something's going on like

Scott Benner 20:19
that, that those medications, even the over counter ones for reflux can block your ability to take up iron. Did you know that?

Sarah 20:28
I know. So I was severely anemic when I was finally diagnosed with celiac, which could have been either the celiac or the Nexium or both,

Scott Benner 20:36
you realize that some people listening right now are think you're anemic? Because you don't eat any meat, right? So we're not, you're not gonna make any more. Sorry, you're not any make any more, right?

Unknown Speaker 20:47
No, no, no, no.

Scott Benner 20:49
So I really think that might have something to do with it. Honestly, that those, those those medications block the uptake of iron and you don't need very much iron at all. But when you don't have it, it's, you know, it plays hell on you. Like I've been fighting through that for like, two years now I finally feel better, but it's horrible. It just it feels like you've been awake for your whole life. And sleeping doesn't do much for you and you know, etc. This whole body thing to fine tune instrument. And when you when you off tune it a little bit things start going haywire. So tell me

Sarah 21:27
that, actually, oh, sorry. It actually sounds like hashimotos. Like you sleep forever and ever and ever, and you still are exhausted.

Scott Benner 21:34
So many of these problems result in the same kind of like that. That's why you have so much trouble figuring out stuff for Arden because she also her iron was low as well, like so she got her pitch started getting her period. And it just, you know, every time it took us forever, I should say, like, you'd look at her and think, let me start over. So she had the issue where she grew and this and the Synthroid wasn't enough. So she got super tired and her blood pressure went low. And then as her iron depleted, it looks exactly the same. Yeah, so then the doctors were like, now we know what this is. So they were giving her more thyroid, but it was she was anemic. But if you jack someone's thyroid up, you can make their little you can make them hyper, which can mask your symptoms. So then the symptoms got masked, but of course that didn't last forever. And we were at our like the end of our rope. We were like that's it she Why don't we just like, like, we were thinking about maybe pushing her like in a hole or leaving or something like that, like it was getting tough. You know what I mean? And one day, I figured out my iron thing. And once I got the iron back, me and my brain turned back on. And my wife and I could talk about it like reasonably. I said to Kelly, I'm like, hey, do you think Arden's iron could be low as like it's perfectly mimic it? You know, now that I stopped and think about it, and we took her in. And her iron was incredibly low. Incredibly, yeah.

So she got a couple of infusions. And then she was okay after that.

Sarah 23:13
She on iron supplements currently. No,

Scott Benner 23:15
it's holding up now. So that's good. Yeah, I don't I don't know. She'll get tested again. That poor kid gives a lot of blood, but she'll get tested again soon to find out. And we're actually going this week to get her thyroid levels because we're the doctor still adjusting her thyroid. I'll tell you that's the thing to understand about thyroid is it's if you think you're going to do one blood test, take a pill, and a year later try it again. That is not the way to figure it out. It really isn't.

Sarah 23:43
hashimotos is actually my easiest. autoimmune. celiac is my favorite and diabetes is my least favorite.

Scott Benner 23:51
I didn't know you had them on. You had them read it. And not even on the actual same scale, by the way. Easiest, that one's over their favorite because I'm guessing you like the way you eat. And then how do you like eating? And what is it like to eat gluten free? What are your go twos.

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Sarah 27:13
Oh, that's an interesting question. So pre pregnancy I was pretty low carb just easier to manage the blood sugar. But in pregnancy you're supposed to eat like 180 grams of carbs a day because carbs equals energy energy extol equals growing baby. So I've really had to change my diet. So like for breakfast, I had granola and fruit and yogurt which I would have never eaten before

Scott Benner 27:36
because of the carbs.

Sarah 27:38
Yeah, a lot of carbs a lot of fat sugars. So I don't know you know, I don't notice it. For me. It's normal to eat gluten free. Yeah, just a lot of normally gluten free stuff. Rice, brown rice, if I need it, polenta, spaghetti squash, things like that,

Scott Benner 27:55
I think I'm coming to the conclusion that for me personally. Flour, whether it is in a cookie or bread is is probably the bane of my existence. Like, like my in my because I can, I don't know about you, but I could get like a fresh loaf of bread and, you know, just eat it over three days and not eat anything else and be perfectly happy. And it's I know, it's not good for me. It's funny, as you're talking, I'm preparing two days from now to record with a with a doctor who promotes a complete carnivore diet. Like just the opposite way. So I've been doing this thing like, like, I've been recording with people like how they eat. So you know, talking to gluten free low carb. Now we're gonna have a carnivore, I want to have a vegan, like, I just want to talk to everybody. Because there's so many different ways of eating. I'd like everybody to be able to like explain it. I have no, you know, I have no skin in the game. I don't care how anyone eats and you know, you listen, I really don't, I don't think twice about that everybody who has type one diabetes is going to use insulin. It just depends on how much and when. But I think understanding how to use it impacts everybody's eating. So I just thought you know what it's not, it's not me saying this is the right thing to do, or that's the right thing to do. Because I didn't I genuinely don't have a feeling about that. But I think it's I think it's kind of important to talk about, I want somebody to have the nerve to come on and say I've just a standard American diet. I eat a lot of processed food. I have meat, I have vegetables once in a while I drink soda. Like I want someone to come on and talk about that as well. So but this guy is gonna, you know, he's going to talk about you know, that that that side of the theory that you know a long time ago people just ate meat and

Unknown Speaker 29:45
oh paleo

Scott Benner 29:46
Yeah, well, it but even more so like, I don't understand the difference even so they call it carnivores. It'll be interesting to find out the whole reason I reached to him as a doctor instead of just a person with type one diabetes. To eat that way, is because I thought he could speak very specifically to fat and protein and how it makes your blood sugar go up because he's not type one, but he wears a CGM. So I thought, why don't we see what it looks like in a regular person who's also a doctor and can kind of explain it. So that's my, that's my roll call about having him on. I think that should be interesting, for sure. And then he can talk about how he eats too. Anyway. So how are you finding having diabetes? You manage with pens, needles, pumps, what do you do?

Sarah 30:31
Um, I will say diabetes is annoying. Very annoying. So in the beginning, I was definitely still honeymooning. So I was just on receba once a day, usually, I didn't even Bolus for meals unless it was like Thai food. So I felt like a baby diabetic, but a great intro into this world. And then, a couple months before pregnancy, I noticed I had to start bolusing for meals, so I was on humulus Jr. Because you can do half units. actually really liked it. I still have some pens in my fridge. And then a couple months, I knew I was gonna start trying to get pregnant. So then I asked my endo for a pump. And I know you promote Omnipod. But I chose the tandem t slim.

Scott Benner 31:14
I know people that love the T slim.

Sarah 31:16
I love my T slim. And she kind of was like, well, we need to fudge the numbers a little bit because you're only using you know, 10 units a day. But if you think it'll be helpful for your management, and I know you want to get pregnant. So now I'm on Dexcom and the T slim. And I'm in sleep mode 24 seven on control IQ. And I love it. My agency is phenomenal for pregnancy, and I feel pretty good. And I wake up in range every day.

Scott Benner 31:44
I was gonna say what is your range? Which What are you shooting for?

Sarah 31:48
Yeah, so that's an interesting thing with control IQ. So pregnancy, the textbook is they want you under 100 or under 90 fasted. And then under 120. Post meal not over 140 ever. Let's be real, that's impossible, especially with insulin resistance. So I shoot for an agency under six. And however I manage that is however I get it.

Scott Benner 32:10
Yeah. That's interesting about the resistance. So how much did you You said you're using like less than 10 units a day. But how much are you really using now that you're pregnant?

Sarah 32:19
So I'm 25 weeks, so I'm almost in third trimester and yesterday I use 65 units. Hey,

Unknown Speaker 32:24
so

Unknown Speaker 32:26
real diabetic.

Unknown Speaker 32:29
You're in the game now. You went from

Unknown Speaker 32:32
stressful?

Unknown Speaker 32:34
What is stressful,

Sarah 32:36
just managing it's like, especially the guilts that I feel carrying another human's life. And when I'm over 140, and they try to scare you. I'm not going to repeat the scary stuff. But anyone who's thought about getting pregnant with type one knows that they try to scare the heck out of you.

Scott Benner 32:52
Yeah. Well, there have been enough people on here who, who have been pregnant and not known it. And it a miscarriage comes pretty quickly if your blood sugar's high like that I just interviewed. I just interviewed a girl last night, who is a recovering heroin addict. And her diagnosis story is so folded in heroin use that she didn't see her her diabetes right away either. And she was pregnant in there and lost her baby. I that last night I came out of here. And my wife's like, you were in there for two hours. I was like, that was the most fascinating conversation I've ever had in my life. Because there was so much about her life that I just had no context for, you know, I'm like, I don't even drink and she's talking about, you know, oxy cotton. And you know how it moves into other things. And and by the way, I'll I don't know if this means anything? I think it does. You could not look at her. And think I'm looking at a person that used heroin for 10 years. Just you couldn't, you couldn't see it. I don't know what that means. But, you know, we're doesn't mean but i just i never in a million years would have guessed if you lined her up with a bunch of people and made me pick. It just wouldn't have been hard. It's It was kind of fascinating. But But back to your insulin resistance. I'm gonna start talking more about this. Because I'm fascinated with leaps in insulin use and how people's minds can't wrap around it right? Because it's always doubled. You always hear people online say I made it 100% more and it still didn't work. So, so that must not be it. You know, like and they'll do it like for like little kids or for adults. Like you know somebody who's basil, I don't know, point five an hour, they'll be like I made it one. My blood sugar still 250 What else do you think could be wrong? And I'm like that you limited yourself by doubling your basil and thinking that there's something about that. The percentage I've moved, there's it's the 100 it's just you know what I mean by that like, it's just I made it 100 2% more. That's an in their mind that's like, that's as far as I could go. You don't? I mean, yeah, I'm gonna, I'm gonna find a way to talk about that more, because I see that with so many people as a limiting problem for them. But how do you how do you make the leap? How do you get to like 65? You just see the need and just meet it with insulin.

Sarah 35:21
Yeah, it was scary in the beginning, because pre pregnancy if I bought those two units, I would have been scared of lows just because I didn't really need that my pancreas was still producing some insulin for me. Yeah. So I just, you know, my endo at the beginning, I love her. She said, pregnancy is going to make your insulin go psycho, one way or the other, you're going to go low, you're gonna go high, you're gonna use a ton, you're gonna use nothing. She said, Do not think about the number. Think about, it's helping you grow your baby. And that's it. So I try not to look at the number. Occasionally I'll go in and look at the totals. And then if it's really wonky, like one day, I had 85 units that before bed, I mean, before dinner, and I changed my infusion set turned up who was kinked. So that's how you use it. But I try not to get in my head about it. I think, as diabetics, we already have so many numbers running around, and it's really a platform for an eating disorder. So that was my thing with pregnancies. I'm not counting carbs, I'm not looking at my weight. I'm focusing solely on the diabetic numbers. And that's it. And that was my boundary with the doctors.

Scott Benner 36:27
What do you think that is? About the idea that a lot more insulin feels wrong to people?

Sarah 36:36
Um, I think it might be shameful because we've grown up in a society where type twos make up the majority of the diabetic population and being on insulin is sort of a shameful thing.

Scott Benner 36:49
And so if you can get away with a little bit of it, that's okay. But once So, I have I sneak a cigarette after dinner, but I don't smoke all the time. Like that kind of thing. That feeling of if I do enough of it. See, it's funny, because I don't have type one, I can't wrap my head around it. You know what I mean? And I've always just been very just used as much insulin as the situation requires mindset. But I do I do understand what you're saying. And and I've heard it echoed by a ton of people, honestly, you know, which is why I wanted to talk about it as well with you and and with, you know, somebody else in the future because it's it. It doesn't make any rational sense that it feels like a failure to use three units for a meal instead of one unit for a meal. But it's but it totally is how people feel sometimes.

Sarah 37:45
I think for me, it was more fear, because pregnancy lows are way worse than normal lows for me. So the couple times I've been like really low for me, it was horrible. And so I think it was more the fear of like last night I Bolus 11 units for dinner, which had you told me that pre pregnancy I would have laughed at you. I'd have to eat like handfuls of cotton candy. Um, so I think it's just the fear of miscalculating and going extremely low. It's there's no shame in my numbers for me personally, but I understand the stigma. And I had a family member. We were on FaceTime recently while I was pregnant, and my pump was beeping, whatever. And they said oh why are you using insulin? Can you just take a pill? You know, my family member was had diabetes during pregnancy like you gestational is not like me, she just took a pill. Why can't you just take a pill, you know, you need less insulin. And I was like we're getting off the phone now. I'm gonna send you an email with academic articles about how wrong that is. So I think that's just the stigma in a lot of communities in America unfortunately.

Scott Benner 38:53
Look who thinks they know something

Sarah 38:56
like gestational I wish

Scott Benner 38:59
I would buy that get I would pay money to switch to gestational Is there a switch? I can throw it? I mean, I understand that. Listen, I understand a person having a different experience, not understanding your situation. And voicing the experience. I don't get the doubling down and the being nasty about a part. That's strange to me, but very, very human. For some reason everybody thinks they have the better answer. And it isn't enough to just share it with you. They want you to accept it. You know, like I do you think do you think she thought she was saving you? Or do you think she felt like I know better than you and you're not listening? I wonder what that is? Not that you would know either. But I'm fascinated by that.

Sarah 39:44
I think it's an ageist thing as well. Oh really? Like they know better because I'm in my mid 20s

Scott Benner 39:50
Oh, you're young you couldn't possibly understand this. Like,

Sarah 39:53
yeah, but I'm type one.

Scott Benner 39:55
How can I have it? You don't but even Yeah, no That's that that translates, right? Because we talked about it earlier, right? The way people eat, you know, you have a, you seem to have a what I consider a reasonable idea like I am, you know, I eat vegetarian, and you can if you want to or not, and whatever, and not, you know, I'm gonna spend my entire life screaming as loud as I can at everybody who doesn't understand and believe what I believe. But it really does happen a lot, doesn't it? So what did we talk about last time that we haven't gotten to yet that your brain is going? I can't believe he hasn't asked me about this, because I know there's got to be something.

Sarah 40:35
So last time, we talked, I was still on injections. I wasn't on the pump, yet. I was barely using insulin. So you really talked about or you asked me questions, I think about how it was being a slow onset diabetic and how that feels. And being integrated in a type one community when you're still sort of a baby diabetic, per se.

Scott Benner 41:00
So you were trying all aspects? Yeah, you were trying and you're involved online a little bit, right?

Sarah 41:05
Yeah, occasionally, yeah.

Scott Benner 41:07
Yeah. Did you just feel like an outsider, like, I don't really have the same diabetes they have.

Sarah 41:12
So I did not feel that way. I don't judge people in their management of anything, medical or not. But people judged me, which was hard. And not just me, but like the identity of Lada or slow onset type one.

Unknown Speaker 41:28
Okay. So that was, I mean,

Sarah 41:30
I'm a type one I just managed differently at the beginning of another type ones.

Scott Benner 41:34
So is the is the larger issue, you show up in a space, your life's been turned upside down, you have diabetes, but you show up and these people don't think your diabetes is, I don't know, as diabetes as their diabetes. And so you're not the same. And you get shunned away for that, like, you're not allowed to be part of this group.

Sarah 41:56
I wouldn't say shunned but I would say almost laughed at like I went. So there's a phenomenal adult type one Meetup group in Denver. Not during COVID,

Scott Benner 42:08
pre COVID. Like how everybody has to say that I wear a mask, don't worry.

Unknown Speaker 42:14
Like, okay, I believe it. But go ahead during COVID, of course, but pre pre COVID

Sarah 42:20
I remember going to my first meetup and being brand new. And you know, I was still on interesting, but I just wasn't on very much homologue and identified as a type one, because that's what my medical records say. And it doesn't matter anyway. I remember someone being like, you haven't been in the 300. yet. You're not a real diabetic. It was like shaming me for having a half working pancreas. It was really odd.

Scott Benner 42:41
Yeah. Well, you would think that people would say, hey, that's great. You want to know what's going to happen later? You know, cuz I could tell you because it's happening to me right now. And I wonder if that just is from the people who are there onsets very quick, and they never got to experience what they probably seems like a, you know, the classic definition of honeymoon, which is, you know, a whimsical, free time, you know, and maybe they're jealous. That didn't happen for them that way. I don't know. Doesn't make sense to me. You're at a meetup group, you'd think these would be the people? Excuse me? Who would be like, let me explain more to you. I tell you I don't Are you in my facebook group?

Sarah 43:24
Yeah, yeah, actually, I accidentally said or didn't and arcimoto is a new correct.

Scott Benner 43:29
Okay, so I think that is the most inclusive space I've seen so far. I don't see people arbitrarily being you know, snippy with each other, I think is probably the best way to put it, like just wanting to infer my diabetes is worse than yours, or, you know, like that kind of I don't see that in there. I mean, I haven't, it just hasn't been a problem. I keep crossing my fingers that it keeps going that way. Because I don't understand that. I mean, I guess there's a psychological understanding, but I just don't know what it is.

Sarah 44:04
I did have a couple people when I shared my story at these initial meetups. That said, That's amazing. Keep your beta cells as long as you can. So there are people that are supportive and understand honeymooning and things like that. So these sort of negative folks are one off, but I think changing my identity to type one as opposed to a lot of helped a lot.

Scott Benner 44:26
Yeah, especially because I've now spoken to so many people who have or had been lotta, and they can't really define it. Do you know the mean? Like, are you okay? What's How? I'm

Sarah 44:39
just 143 I sorry,

Unknown Speaker 44:42
I'm gonna pull this I were bolusing

Sarah 44:45
pregnancy they. It's like, every second I have an alarm.

Unknown Speaker 44:50
You're bumping and nudging a lot are you?

Unknown Speaker 44:53
Oh my goodness.

Sarah 44:56
Have you seen the T slim Connect app the new app

Scott Benner 44:59
I saw picture of it. I haven't seen it like up close. Do you

Sarah 45:03
want to see on the video and we can explain it? Let me see. Let me pull it up. It's actually pretty cool. It's helpful for me. So it mimics your it's going to take a second I just bought but it mimics your Dexcom and then it can show you what your number when you bolused Cinema 143 and it told me I'm alarmed. Oh, yep. When I just gave three units extended. Okay, but you can scroll. How far

Scott Benner 45:30
Oh, like sugar, mate. You can roll backwards. I like that.

Unknown Speaker 45:34
Yeah, you can see like, I stack the stack to stack yesterday.

Scott Benner 45:38
It's not stacking if you need it, sir.

Sarah 45:42
Yeah, but I just couldn't come down below. And again, I know my control is way tighter in pregnancy, but I just you can see I was barely under

Scott Benner 45:48
1.0. That's really amazing. That's a good app. I like that. Oh,

Sarah 45:52
it's phenomenal. And you can see you can't Bolus from it yet or anything. But you can see like, what my Basal rate is what my carb ratio is the time I started my Dexcom

Scott Benner 46:01
What's the functionality then you alarm? Did you pick your phone up? Or did you pick your pump up?

Sarah 46:07
My pump vibrated because it's set at 140 for pregnancy and post.

Scott Benner 46:12
Listen Ardennes is set at 124. Because I like to. I like to react sooner to avoid those sorts of things. We just made a pretty large Bolus before I started recording with you. And she's like, I didn't get an alarm. And I said no, my phone set lower than yours.

Sarah 46:30
Oh, that's interesting. Yeah, my decks comes at 120. So that's why I was looking at my watch because my watch was alarming me. But yeah, I had a bunch of insulin on board. So I wasn't correcting it.

Scott Benner 46:38
I hear I have an alarm that's 10 points lower than hers for her high. So that, you know sometimes we're not together, right? Sometimes it takes, you know, communication time. So I'm always about knowing what I'm doing in time to make it a valuable decision. You know, I don't want to hear like I don't want to hear 130 because the way Arden's blood sugar's work. 130 is going to be 150. But 120 I can stop 150 is sort of the idea. And I do want to move it down. I do want I would rather my alarm go off at 110 and hers go off at 120. But we're getting to that. So we'll see. I'm just trying to put her in a mindset.

Sarah 47:24
Think that's another interesting part of being diagnosed as an adult. My parents were not involved in my management. They never will be

Scott Benner 47:29
Yeah, ever.

Unknown Speaker 47:31
Ever. Yeah.

Scott Benner 47:34
You're like, no, for sure. They're definitely not. You should get that. Sorry, get that and to help you. Or whoever she was. I'm sorry. You

Sarah 47:43
have a gestational. I made the mistake of putting my mom on my Dexcom really early on. That wasn't no mistake. So yeah, it's interesting as an adult because, like my parents couldn't ever do this. And they never did. That's the thing.

Scott Benner 48:01
Yeah. No, it would take it would probably take you him you don't live with them. It would take you years to explain to them and and so they had it meaningfully. Let them listen to podcasts. They want to understand it better. And they'll be up here but they'll be like Sarah, we don't want to do we were listening to Episode 214. And give me like, leave me alone.

Sarah 48:21
It's interesting because for labor a lot of the hospitals make you go on an insulin drip. Have you heard this? Uh huh. Yeah, I have. So I'm refusing unless I'm like in a coma because one control like you smarter than I am about my diabetes. So why would I give up control? But also standard is they put you on an insulin drip, check your blood sugar by finger prick once an hour, and then adjust once an hour.

Scott Benner 48:46
You've seen that you've seen the other side. You're not going to do that. You heard Samantha talk about it right about her delivery. On the show.

Unknown Speaker 48:52
Um,

Scott Benner 48:53
I think I listened to the first episode of hers. Okay. Yeah, she, she came on and talked about it. She was you know, had had her baby already. And he's very cute. And, and she talked about the delivery and how she managed, she said her husband up so that if something happened, he could keep doing it. They managed straight through on their own. Everything was great. And then after the baby, of course, her insulin needs like, immediately went back down. She talked a little bit about and we're going to talk more about this with some other people who've been pregnant the how she how striking it was that after the baby was there, how they treated her like a standard hospitalized diabetic again, it was like I think she said it was kind of shocking the difference. Because the you know, the people, I don't think people really think about it in a hospital setting. You go into a hospital to have a baby. The people in that room are part of a team that work with the doctor. You've had that whole conversation with them. I'm gonna manage my blood sugar, blah, blah, that's all great. And then the baby comes out and now you're in the hands of complete Different people who you've never had that conversation with once. And now they're just like, this is how we handle people with diabetes, you're gonna get a finger stick every hour, this is going to happen. And you're, you're having this. She said, I think, if I'm remembering correctly in this moment where she was trying to just, you know, convalesce and enjoy your family. Suddenly, she was in this kind of hellscape of being treated, the way people treat you with diabetes. I know that Dexcom has been on recently talking about how COVID has allowed them to get CGM sensors into hospitals. And it's not going to be in time for you know, your birth, but hopefully they'll understand how to use them better in the future. I think it's a really good first step. So

Sarah 50:43
well, it doesn't matter because I'm signing any form that says, I'm controlling my own diabetes. They're not, they're not welcome to. Unless I'm in a coma, they are not welcome to give or any insulin dexterous. I think my husband knows how to use it. I have a diet bestie, who's going to be on call during labor for my husband and call her with anyhow?

Scott Benner 51:01
Yeah. Let me say this, and I'll talk around just a little bit. But it's possible that when Arden had her laparoscopic, to take out the cyst that I might have forgotten to turn the loop off when she went into the operating room, it just I forgot. And that was fine. Turned out that loop work great. Even when she was having her little surgery for 45 minutes. It's, there's no reason to think it's not going to work the same. Because that you know of that. And I showed that look, I showed them how to like, I'm like you can disable this right here. Like if you want to shut her her insulin off completely. I was like, do this. And it'll be off, you know, and then you can manage it any way you want. If there's a problem while she's in there, I didn't put her into a situation, but they were just like, we don't want this thing to make decisions while she's under it. I'm like, Yeah, you do. You just don't know it.

Sarah 51:56
Right? Why isn't l&d nurse know more about my diabetes than control IQ that's been watching my patterns for at that point nine months, right?

Scott Benner 52:03
I told the story on here. But as you know, we've had the initial conversation with the doctor doing the procedure. And she's like, yeah, that's fine. But then when the first nurse came into proper, she didn't have that conversation. She's like, No, you can't use this and have a nurse not walked in eventually, because I just kept retelling my story to anybody I made face contact with. One of the one of the nurses came in and she's like, Oh, my friends a type one. Let me see. And she goes, Oh, I've seen this before. And because she was there was nothing medical about it. She had some sort of like knowledge of like, I've seen a Dexcom screen before. Oh, yeah, sure. Go ahead. I was like, that's it. That's how we make decisions around here. Okay.

Sarah 52:41
What I had shoulder surgery in December, my third shoulder surgery but but my first is a diabetic. Yeah. And I went in with a Dexcom. I was on injections then. And I gave the actual what he called the receiver. I don't use it anymore. The anesthesiologist, and I remember him being like, Oh my god, am I gonna be responsible for this? What if it doesn't work? What happens?

Scott Benner 53:03
Worried about what's what could go wrong? Instead of focusing on all the things that are going to go right from this and by the way, you know how to handle it when when people don't have it? So just write it out and see what happens. You just said something that reminded me like we talked about that the first time like, Why do you have so many so have you had so many shoulder surgeries? You just love them? You're addicted?

Sarah 53:24
Sure, no, um, I was a serious rock climber in high school and I tore my labrum rotator cuff and bicep in Yosemite and it just kept. Now my shoulder works you can see in the video, but it's pretty amazing. So my first surgery was libram rotator cuff. Part of my collarbone second surgery, they cut my pec minor because I Thoracic Outlet Syndrome, I sent you that link. Make sure I didn't didn't have it. And then the third one in December when I wasn't diabetic was a bicep to desus which means they took my biceps long head anger out of its home and reattach it somewhere else. So I've a bunch of scars.

Scott Benner 54:02
Wow, that's a lot. I have also had rotator cuff surgery and I'm excited to put my arm over my head just like you did it. Mine's a little stiff still. You have a little stiffness.

Sarah 54:14
You know this last surgery this surgeon was phenomenal. I was so nervous going into it because the first two didn't help but ya know, it's the only limitation I have is weight bearing and that's why I did it because I could have because my bicep was torn. I couldn't hold a baby, hypothetically, but now I can't. But I have to

Scott Benner 54:32
say that's gonna come in handy. I I had a motorcycle accident when I was like 20 and I got thrown from a motorcycle and I came down on my head and my shoulder. So I hit like this and the shoulder hit the ground. I was like up and down. And I was broke. I have settled on here million times I grew up really broke. I wasn't riding a motorcycle for fun. I was riding a motorcycle because they were affordable transportation and To my shoulder, like, I still have like a lump here. Yeah, I see, right? There's like a, like a thing that sticks up. And they're like, you have to go the hospitals like you're not taking me to the hospital. It's like, I can't afford that. So I went home, and I laid there while my shoulder was, you know, really busted up inside. And for years, it just it I didn't notice like, it was okay. Like, once it healed, I was okay. But my God, like, I'm gonna say about five years ago now. I it just it got worse and worse and worse, I couldn't throw with my son anymore. And one day, I had a water bottle in my hand, we were actually at a thing my son was working out for college, trying to get recruited. And I couldn't walk around and hold the water bottle in my hand because it hurt too much. And I was like, I gotta go see a surgeon. So my, my bones had reformed. Like when they when I went in, and I got the initial X ray. The doctor said, I'll bleep this out. He goes, I wish you were a doctor. So you could look at this and see if your shoulder is then really understand it. And I was like, really, he goes, he goes, this broke, and it's all calcified over and it regrew, and he goes, and there's a spot where your rotator cuff like, goes like it runs through it moves. And he goes, and there's this lump there and the lumps been cutting your rotator cuff tendon your whole life, and it finally just snapped, has like you. And then he started showing me and I was like, Oh, that's like, and then he started showing me one from a book. I was like, oh my god. So they went in and they cleaned that bone up and reattach the ligament and everything but the recoveries not it's not quick. And it's not pleasant. So I should have went to the hospital that day and just had a bill I couldn't pay.

Sarah 56:47
I had to teach my husband had a braid my hair, because when you're in a sling, you can't do your hair.

Unknown Speaker 56:52
Yeah. Oh, the so the sleeping after the surgery was terrible.

Sarah 56:55
Oh, for anyone who's gonna get any shoulder surgery, you have to invest in the Lazy Boy, that is the only way you can sleep after shoulder surgery. And I've had three to be up

Scott Benner 57:05
Kelly would pile pillows around me at night and like, and I was up like this, and it worked for the most part, but man, it was bad. And I tried really hard to not use the pain medication to so they gave me the first one. I remember coming home. And Kelly's like, you know, they want you to take a pill now, like as I was coming out of the surgery has an I'll be alright. And the nurse like the main she's like, like just nodding her head like you're an idiot, you know? And so she finally spoke up and I said something incredibly inappropriate coming out of the anesthesia. So I think she was already like, what am I doing here with this moron, you know, but so when I started being a person again, she's like, seriously, she goes, just shut up and take the pill. And I was like, okay, so that first prescription I took. And then when it ended, I was like, I don't need more, but then I realized I did. And I said to the doctor, I'm like, you gotta give me something that's not as, like, harsh as this thing. So we kind of like stepped down from there. And I didn't finish that bottle. There was a day where I was just like, I don't need this anymore. I'm okay. Probably like two weeks into it, I think. But yeah, I mean, I'm thrilled I did it now, but it's kind of scary.

Sarah 58:15
Interesting thing for me after my surgery was I was still honeymooning, I was still mostly just under Seba, and my immune system for the next month healing focused on my shoulder instead of attacking my pancreas. And I swear I was not diabetic for a month.

Scott Benner 58:29
Now you think you think all the white blood cells ran somewhere else? They were busy with something else.

Sarah 58:34
I mean, I took off my Dexcom I had a Dexcom break for a month my agency came back lower than it was before. It was actually really astonishing. I was like I should have more surgeries it'll cure this.

Scott Benner 58:44
I don't want anyone listening to start cutting tendons in their arms to make their blood sugar's go down. I don't think that's going to work that might have been an anecdotal thing that she's

Sarah 58:54
a joke I make is my diversity and I we tried ever since. I've even talked about ever since on your podcast,

Scott Benner 59:00
the implantable CGM,

Sarah 59:02
the dumbest decision I've ever made in my entire life. Tell me why. What I can show you because we're on video. But ever since scar is bigger than nine out of 1211 out of 12 have my shoulder surgery scars. It's massive. And it was painful, even though they inject Medicaid, and it was inaccurate. And I live in Colorado and I'm active where it's sunny and any time I was in the sun, the stupid thing red over 300 even though I was well within range just because the sun affected the I don't know, it was the dumbest decision I've ever made to get that stupid thing.

Scott Benner 59:38
Ever since CGM sensing technology the dumbest decision I've ever made.

Unknown Speaker 59:43
Oh my gosh, it was a horrible device.

Scott Benner 59:46
Are they still making it? It went out of business didn't it? Didn't COVID pushed out of business.

Unknown Speaker 59:50
I hope so.

Sarah 59:53
But there's I have a diversity Sara. We're like doppelgangers. It's kind of crazy. But we met online in the online diabetic. community and we've tried ever since around the same time, and that's how we became friends.

Scott Benner 1:00:03
No kidding. Well, they, they still have hope you became friends because you hated it.

Sarah 1:00:09
Yeah, she posted on Instagram about how much she hated it. And I was like, wait, I hate it too.

Scott Benner 1:00:16
Well, it's they're still they still have a website. So I guess they're still in business. But I had heard. I felt like I heard towards the beginning of COVID that they couldn't ship product or something I forget now, I really don't know. Honestly, I'm just saying things I could be completely wrong about. But I feel like that's something I heard. Yeah, I think they're, it seems like they're still chugging along here. But I'm sure what it makes me feel like is, imagine you put on a Dexcom sensor that wasn't working really well. And you couldn't just take it off and put on another one because it was under your skin. That would be that seems like an issue to me.

Sarah 1:00:56
But I worry about that ever since in the Dexcom for two weeks together at the end of the ever since I only worked for two months. And then I called him I said get this stupid thing out of me. Right. Anyway, it was so incorrect. It made my management worse. was horrible.

Scott Benner 1:01:12
Jeez, well, that's a ringing endorsement.

Unknown Speaker 1:01:15
I love that song.

Scott Benner 1:01:18
Did we set this up? Tell people we did not set this up. Because I heard you say earlier I know it's in people's heads when they know the show. Like you're like, like I asked about your pump. And you're like, Well, I know you're promote on the pod but I have at least one. I don't. I don't think of it as promoting Omni pod. I think Arden uses an omni pod. I love it. And I can speak about it from her experience. She loves it. She could speak about it from her experience. And they buy ads on the podcast. Like I don't think that's the I don't know, like it might be a distinguishment my head that's unimportant. But like, I'm happy to talk about your T slim pump. And I don't think I don't think Omnipod thinks people don't believe there are other insulin pumps, you know. So

Sarah 1:01:58
I think once they come out with horizon or whatever, they renamed it, it'll be a game changer. But for me, I couldn't give up the control IQ.

Scott Benner 1:02:06
You want to. Yeah, yeah, on the part five, I think they're gonna call it. I think it's on the pod five with horizon. But I'm not. I'm not even certain but it does sound fancier like that. Yeah, yeah. I've talked to some people who were in trials, and they're not supposed to talk about it. And I definitely, and I definitely can't tell you what they told me. But it sounds like it's going well to me.

Sarah 1:02:29
So it's anything like control IQ. It'll be a game changer. Yeah.

Scott Benner 1:02:33
No, it's I think it'll be I mean, lupus stunningly amazing. So I think these algorithms are for anybody who wants them. Just once you get the settings, right. And you sort of just understand how it works. You know what I mean? And you can, and you can play in the sandbox. It is an algorithm and with some comfort, it's, it's amazing. I, I'm astonished by it. It's um, and when we first started doing it, Arden would say, why are we doing this when we're so much better at it than this is? And I said, well, sweetie, I agree with you. I was like, but I have slept a little more. So let's try to keep going and see what happens because I'm almost 50 and I don't know how much longer I can get up once a night every night of my life. I was like, it's okay once in a while. Like she was a little high last night. And I people will probably laugh at me like I didn't go to sleep until like two o'clock last night because Arden's blood sugar was stuck at like 145 sure, most people were like, You're an idiot, you should have went to sleep, but I was like, I can fix this. So like, I fixed it. I got her back to 90. And then I was kind of then I started a TV show. So I was like, I'll just finish my show. And then I went to sleep but I guess I had the Netflix thing not been in the mix. I would have been asleep like one o'clock, which, you know, but I just didn't want her to be 150 overnight.

Sarah 1:03:56
So is she not looping right now?

Scott Benner 1:03:58
She is it just wasn't? Oh, I think I what I'm thinking because I just she made basil changes this morning. I think our basil was a little low. I think this sedentary zoom lifestyle is starting to catch up with her a little bit. So

Sarah 1:04:14
yeah, you know, I'm a graduate student and I teach on zoom on remote and I sit on my behind all day.

Scott Benner 1:04:21
What do you think of teaching online? Do you think it's committed to being in person or no?

Sarah 1:04:26
You know, I love it selfishly. But I know my students are really struggling with being engaged in learning.

Scott Benner 1:04:34
And my son is talking about he's incense sometimes he's just like, I'm, I'm teaching myself. It's like this guy's making a speaking about one of his professors like he makes these videos. And then he chats during class. And then you have to go back and watch these like, it's almost like you're in two different classes, first of all, and he's like, you don't have the ability to look up and just say, hey, you just said something here. It didn't make sense to me. You know, you have to make a note and you have to go office hours and, and give you a lot of thought, you know, he's like sometimes people's office hours or during other classes. And I can't do that there's no kids to walk out of the room with and look at and go, Hey, did you understand, like all that little those pieces and he's taken take some pretty tough courses. So it's a it's been a it's been like a struggle for him. He's a really good student and it's been a struggle for him. Arden seems to love it. I don't think if you tend to art and she'd never had to go back to high school, she'd be like, Alright,

Sarah 1:05:33
I agree. We can eat during class, we don't have to worry about packing snacks.

Scott Benner 1:05:38
She's in her bed right now. Like, up against the wall with their knees up in her laptop. And he just got like a bottle of water over here. And, you know, she's just she seems pretty hot. But you know, she's not moving around as much as she needs to be. I think that's clear from her firmer insulin use. And I don't know, she's just she's a social person with her circle. But she's not looking to meet every person that goes to that school. Like, she's not like, Oh, no, I'm missing out on the dance or like, she doesn't have those thoughts. And she's like, she just doesn't care. But anyway, so is it easier for you to teach on zoom or learn on zoom?

Sarah 1:06:19
Oh, you know, both. I was so nervous about this sounds ridiculous. But I was I live in Colorado I was nervous about in December 8, eight months pregnant, waddling around an icy campus. I don't have that worry anymore because I just waddle from my toilet to here and my bed.

Unknown Speaker 1:06:35
What's yours from the toilet to here to my bed? The life of a pregnant person.

Sarah 1:06:42
And the fridge that to

Scott Benner 1:06:44
Arden probably wouldn't want me to tell you that she took her computer into the bathroom once. And she's like, the teacher called on me.

Unknown Speaker 1:06:56
Her video was on

Scott Benner 1:06:57
no no she she did that. Oh, they show like the you know the top of the head thing that they all like just they don't the videos on but you don't show them anything. So she muted her video, walked in, just you know, sat in there. And then she got called on. So she turned the video back on just show the top of her head answered and then shut it back off again. But she's like that I'm just taking it.

Sarah 1:07:18
See my students to get full attendance. They have to be present. Full Face view in the camera dressed not in pajamas. They can't be moving around because it makes me nauseous. Yeah. You have to be like you're in class.

Scott Benner 1:07:32
I'd rather be in pajamas than move around. Just so you know.

Sarah 1:07:35
Oh, yeah, absolutely. That makes me so nauseous. Yeah,

Scott Benner 1:07:38
she's dressed and it really she gets up and she gets ready. And you know, all that. She's just like, you know, I thought I could get away with it. And I was like, yeah, you should have known that wasn't going to work. You should just say look, I gotta i'll i'll be back, you know? But she's like, I didn't want to miss anything. And I was like, Yeah, I hear what you're saying. That doesn't work out. Usually.

Unknown Speaker 1:07:55
That's funny.

Scott Benner 1:07:56
She got pinched.

Unknown Speaker 1:07:57
It's comical. Yeah,

Scott Benner 1:07:58
it was a good time. What are we not saying that we should be saying? Anything? This is a nice conversation. I just don't know what we talked about a

Sarah 1:08:09
lot, a little bit. We talked about how she modos? I think so last time we talked about the last time with the recording. Yeah, that got deleted. We talked about the trauma and autoimmune. And my area of study was another topic, which isn't that important. Yeah,

Scott Benner 1:08:26
I was not pregnant. I was about to ask to remind me what your your advanced degree isn't.

Sarah 1:08:33
So I studied communication singular, which means I study human based theory. And my area of research is twofold. The first is sexual violence on college campuses, how we communicate about it or really not. And then, because of my recent diagnosis, I've also switched into how we communicate about disability, specifically invisible disabilities, such as Type One Diabetes.

Scott Benner 1:08:59
And did you get into that, that practice because of a personal situation?

Sarah 1:09:05
Yeah. So that's what we talked about last time was my experience as a sexual assault survivor, and how that's really fed my interest in this area of research. Yeah,

Scott Benner 1:09:17
I do. Remember now. It's hard to ask about twice the first time the first time, it's sort of like, hey, so how that happened, and you trip into it? And you're like, Well, I was, you know, and then I'm like, Okay, now we're talking about it. But now when I know what the answers are gonna be, it's hard for me to want to ask you that. That's a really I'm experiencing a very strange feeling of but that really is a that's an insight into me, in case you're wondering, like I wasn't, I had no trouble with it the first time we did it, because I didn't know what was going to come up. And now that I understand the direction that the conversation would go, I don't have it in me to ask you about it.

Sarah 1:09:54
You don't have to. It's I mean, I'm happy to talk about it because it's public knowledge but I also recommend Is that it's a content warning for a lot of folks.

Scott Benner 1:10:02
I don't listen, that's not the part I mind. I just I really like I. I don't know what maybe it's because I can see you this time too. I don't, I don't know, I'm trying to because I was just thinking before it came up, you are really a tremendous communicator. And so it makes it makes you seriously you speak measured, you don't speed up or slow down, you laugh appropriately so that it doesn't overwhelm my conversation. You're waiting for my cues. I'm, you know, all that you're a great communicator. And I'm trying to figure out what's wrong with me that now that I see you and you're younger, and I'm I all that, like, do you know what I mean? Like when it's just the voice? I can, I can just put you I don't know why it's very strange for me. But would you mind telling the story?

Sarah 1:10:54
No. So I will give a content warning for folks who may feel triggered by sexual violence, I'm not going to go into detail at all, because that's personal. But long story short, in my undergrad, I transferred from NYU to a school in Colorado. I liked New York City, but I liked rock climbing more. In my first year in Colorado, undergrad, I made friends with someone in a rock climbing group. And long story short, again, content warning. He got me incredibly intoxicated, I was 19 incredibly intoxicated and took advantage of me in his apartment. And I reported the and I'm not gonna use the word because I think it's quite triggering for folks. But the university call it non consensual sexual intercourse, which we all know what that really means. Yeah. Um, but anyway, I reported this incident to the university and to the police, because he was a member of the university. And I'm not sure if you're familiar, but most people signed codes of conduct or something similar for universities. One of them is, I won't steal from the dining halls, I won't harass people, I won't commit violence against people. It's a different level of proof. So through the university, he was found guilty, per se, through the code of conduct for a couple of things, including what I just said, had was kicked off campus. And then I went through the police system, which we know is very hard to find a conviction. And he wasn't convicted because it was just him. And I he said she said, but I was able to get a restraining order or protection order, which was the benefit of the police investigation. Anyway, long story short, the University didn't handle it, right, because they were going to allow my assailant back on campus semester after he committed the violence. And I was furious. So I ended up. I'm gonna say this very nonchalantly, but I ended up filing a title nine complaint against my university in Colorado with the government, because I was really mad at how they mishandled it. So now my researches in title nine and how policies around sexual violence on college campuses don't meet the practices, even though they may sound phenomenal on paper in their policies. The practices don't really line up because they want to cover their behind

Scott Benner 1:13:06
is that is that the crux of it right there. It's just about not being liable. It's about the college not wanting to open itself up to you suing them because they hired this person. Is that do you think, at its core, why it's not prosecuted differently? Or why he wasn't kicked off forever? Or do they mean like,

Sarah 1:13:26
Yeah, so the laws have changed recently. Partially for politics, but I will say so. Universities are afraid of getting sued on either side, and I threatened to sue them, we settled out of court. This is all public knowledge, some big bad secret. So you can do for Title Nine, you can do to a couple things. One is report internally to the university, I did that to the title nine office, you can go to the Office for Civil rights to the Department of Education and report an entire University at Whole, which I did. And then you can also sue them and or threaten to sue them for monetary settlement out side of the university, which I also did. But I think that they're afraid that if they expel an assailant, the saillant will sue them. So it's kind of goes back to find a middle ground where they meet the survivors needs but also they're not afraid of getting sued by the assailant.

Scott Benner 1:14:24
It'd be funny like if you're going to get sued by somebody why would that be the person you give the preferential side of the treatment to that's it but I I'm trying to as you're talking trying to put myself in that position like I'm making myself a college and trying to wonder about all the the avenues that we could take hits from if I was in this situation. I'm also thinking that sexual assault on a college campus is going to happen, right it's it's faded completed. It's going to happen like colleges don't not have that happen. Right?

Sarah 1:15:00
So my argument, and this is what I try to show in my research is that I think it stems from communication at a young age. So you know how, hopefully you didn't do this, but I'm not judging if you did, but you know, when you have toddlers, and you're tickling them, and they're laughing, and the thing stopstopstop, and you keep tickling them, you're breaking their consent to my own research based philosophy is that we need to teach what consent means from a very young age pre sexual consent. So that when we get to the age where there is sexual consent, people know what consent looks like, does it look like feels like doesn't feel like? So there's no ambiguity in the situation? If that makes sense?

Scott Benner 1:15:35
It does. No, it makes a lot of sense, and how you could carry that into adulthood. It could show you, like, everybody knows a person who doesn't want to be touched, if they don't know what's going to happen, or, you know, you can't just walk up to them and give them a hug or a kiss. And some people just really don't care. You know, it's a, it's a very personal thing. And it's not just personality, it definitely comes from something in their past, you know, something that happened to them, or was just a norm in their home that didn't jive with who they were, or something as horrible as this, you know,

Sarah 1:16:08
90% of college sex assaults are acquaintances. So it's not the typical story you hear of in a back alley behind a dumpster guy grabs girl off the street, it's most of them are acquaintances that they know and are familiar with. And typically, there's a lot of substance abuse involved alcohol or drugs or whatnot. Yeah.

Scott Benner 1:16:30
That sounds about right. Yeah, I know how to end on an up note, don't I, sir?

Sarah 1:16:36
Well, you know, we talked about this at the beginning. Last time, you're like, wow, I did not expect us to Yeah, talk about this.

Scott Benner 1:16:42
I just didn't, I didn't want to it's it's important. And I didn't want to let it go. So I just didn't know I was gonna have so much trouble bringing it up. The second time, it was really crazy. Because I've had so for clarity for people before we before we say goodbye. I had to change computer systems. And when I migrated, Sara's file didn't migrate the way I thought it did. It migrated as an empty shell. And I sat on my old computer system for months, but I'm so recorded out in the future, that by the time I got to wanting to put your episode up, and I found an empty shell of a file, the computer that I'd saved, I got rid of it. It was just taking up space and I blanked it out and I got rid it was it was junky do I actually that's a lie. I gave it to my mom. She's 78 She just needs the internet and stuff, you know, so I blanked it out and gave it to her. And then I actually got her if you can try to imagine I got my 78 year old mother on the phone. I was like, I need you to search my computer for Sara and let me spell the last name and then she's like, search on like the Spyglass mom, click on a Spyglass just like I was like, ah, but she did a good job. And she searched the computer. And it wasn't there, which I didn't expect it to be it was my last ditch effort. And then I had to do the difficult thing of contacting you and saying, Hey, I was about to put your episode out. And it turns out, I messed up. So I really appreciate you coming back on and talking about all this again. But we got the extra bonus of you being pregnant. What do you do? You said you're 25 weeks now. Um,

Sarah 1:18:13
so technically February 3, but they induce diabetics between 37 and 39. So

Scott Benner 1:18:20
yeah, excited. Are you nervous?

Sarah 1:18:23
Um, I'm absolutely thrilled. I think I've wanted a baby my entire life. I was just getting my husband on board. So we're gonna do some baby classes next month, he's gonna do a daddy bootcamp. Good for him.

Scott Benner 1:18:37
So he's getting on board was that being like we can afford it? We can do it, like laying out all the the intricacies of how you're going to? What are you going to do with the baby like, like, you just like put it like a like a crate when you go to work? Or you think you leave it with a person? Or how do you think you'll handle that?

Sarah 1:18:54
So I'm taking a year off graduate school medical leave to be a mom. Okay. And then I also we talked about this last time, too. I manage a website design company on the side. So I hired an assistant who will take over during my three month maternity and then keep doing that remote.

Scott Benner 1:19:11
Well

Sarah 1:19:11
sustained my Dexcom bills.

Scott Benner 1:19:14
That's it was that hard to like, bring an X an outside person into your like, one man business?

Sarah 1:19:21
No, it's not a one man business. I run someone else's website design business. So it's owned by a female entrepreneur. And then we have I think, at this point seven contractors underneath me that I manage,

Scott Benner 1:19:33
wow, oh, that's really cool. I just, there's times where I feel like I need help with this. And then I'm like, I don't want anybody else to be involved. Like, they just don't know my aesthetic, like how would I teach my aesthetic to somebody? How would I teach like, like when I'm editing How would I say to somebody like I would leave that so I don't take content out when I edit I take out noise but there's some breathing ice is gonna sound crazy, but there's some breathing noises that are distracting. And there are some breathing noises that tell your brain that person's continuing their thought and it makes it not feel broken. And I don't know, I just as I'm editing, I hear it right away. I'm like, I don't want somebody this will be distracting this needs to be here. I don't know how I would teach that to somebody, you know, but I don't know, maybe maybe I'm more of a control freak than I thought I was.

Sarah 1:20:23
That's okay, because it's your, your brand, but it's your it's you yet this podcast is us. So that makes sense.

Scott Benner 1:20:29
I have that feeling like it. Like if somebody started editing it up, it would just sound like they were, you know, like, it would sound like sound bites of me chopped together instead of how I think the conversation should go. Like I put one up this weekend. That was kind of unlike other ones, in that I just got on with somebody who I thought was really smart, who understood this one topic. And it's something that makes me upset. And we just talked it through and at times, railed on it. And at times tried to imagine fixes for it. And there's a flow to that conversation. That I think is right. And when I listened back to it, I thought some people aren't gonna like this at all, and some people are, but I think it's important to go out this way. And I didn't know like, so I rolled the dice, and I put it out. And I got one comment from somebody online who's like, you've talked way too much in that episode. That seems to bother people. And I'm like, okay, but then I got back tenfold from people were like, this is really important. I'm glad you spoke about this. I really enjoyed it. I was like, Okay, I can't make everybody happy. But I think if I would have done with that one comment asked, because I heard it too, when I was listening to like, I'm talking too much in this. But if I, if I chopped it up, it just wouldn't. I don't think it would have felt the same. And I thought the feeling was more important than the flow of it. So I don't know how I would teach that to somebody, I guess. I don't think I could,

Sarah 1:21:54
you'd have to find a good fit creatively.

Scott Benner 1:21:56
Yeah. Did I have to pay them? No, I don't have that much money. You know, like, where would I get that money from? You imagine if I had an employee? I'll tell you what, if I ever have in a podcast as an employee one day, I'm going to declaratively say out loud. I've succeeded at this, because that does not seem like a thing to me. I know somebody that has an editor for their show. And I'm like, wow, how did you do that? It's pretty crazy. You know? Anyway,

Sarah 1:22:22
can I give one shout out? Please do your old podcast folks.

Unknown Speaker 1:22:25
You know, we got

Sarah 1:22:27
Um, I don't know her personally. But my favorite episode you've done is I can't remember her name, which is horrible. But the lady whose type one son died in the car accident, her story. Even before the pregnancy hormones, I just cried and cried and cried and cried and cried. And her story is just amazing. And I just if she's listening, I just want to learn know that the community has her back even though her type one son isn't with us anymore.

Scott Benner 1:22:52
That's That's very nice of you to say, I have to tell you that there are so many times that I have conversations. On this podcast, I said it like I told you earlier I I interviewed someone last night, who's you know, at the end of the hopeful end of a heroin addiction, a lifelong heroin addiction almost. And as we're talking, I said to her, I'm like, I never thought this podcast would lead me to have conversations like this, you know, and I started thinking about all the after dark episodes and it Donnie, you know, Donnie is an interesting one. Because the first time I recorded I had a problem with his two, it sounds like I'm a mess. But trust me, I've recorded like 500 of these I've messed up like four of them. So everybody calm down. But Donnie came on. I think his is called after dark trauma and addiction. And we had an amazing conversation. And he never once meant once mentioned. And then we had to re record it. And the conversation went in a slightly different way. And I think he was more comfortable the second time and he told me that his neighbors had raped him for years as a child, and that he felt his family knew about it. And I was like, holy crap. Like, as that's being said, All I can think is like, how I did not expect to be in this position having these kind of like really important conversations. And I'm really grateful for them. This podcast is is enriched my life like a ton, actually. But yeah, I just, you know, here's another example. Like I just people say things I'm like, Wow, you're so honest. Does it feel freeing to just say it out loud? When you have issues like that? Um,

Sarah 1:24:34
I separate the personal from the academic. So I give talks and write about in research about my identity as a survivor, so I think I've separated it

Unknown Speaker 1:24:45
quite a bit.

Sarah 1:24:46
So freeing, supposedly, but I also not telling you like the intimate details that would be more traumatic for me.

Scott Benner 1:24:52
Yeah, I wouldn't want you to either know, like, I don't see how any of that would be useful at all. But so Michelle's episode was called Jessie was here. And yeah,

Sarah 1:25:02
so one where she was driving to like an endo appointment over the mountains.

Scott Benner 1:25:05
Oh no, you're thinking of a different one you're thinking of do is this podcast is one big bummer. Okay, so now you're thinking of do hard things.

Sarah 1:25:16
Yeah, yeah, the word, excuse me, two of her sons passed away in the car accident.

Scott Benner 1:25:20
Yeah, they were on their way to an endo appointment on an icy road. And yes, she had an accident. And when she woke up her sons weren't there. And, yeah, that's a that's a crazy story, because she sent me an email, a significant amount of time after her son had passed away, like yours, I think, and to tell me that she still listens to the podcast,

Sarah 1:25:46
to feel connected to him, right, because of the

Scott Benner 1:25:48
diabetes. And and I was just like, I got that email. And I showed it to my wife. I'm like, What do I like? What do I do about this? You know, you want to respond back and go, Hey, thanks for being a listener. Like, it's like, there's no way. Like, I have to have like, a real conversation with her. And at the end of it, I just said, um, I was like, Look, if you, I can't imagine, I think I said, I can't imagine you would want to, but if you ever want to come on and talk about this, you know, I would do it with you. And she was, it had to have been six months later. And I got another note from her. And she's like, I would like to come on the podcast. And I, Jesus, she's talking and I'm trying not to cry so that I can stay in the conversation and everything. And I don't know, this is a I mean, I joke sometimes, like when people are like, what do you do? And I'm like, I have a podcast. And you know, I joke that it's weird, because I'm older and stuff. But you know, in all honesty has been one of the greatest things I've ever done. So

Sarah 1:26:45
story really touched me. She's a phenomenal mom. And you can tell through the podcast Yeah,

Scott Benner 1:26:50
I'm glad I'm really it's nice you to say I had she'll hear this. So thank you very much.

Unknown Speaker 1:26:55
So I want to be her friend.

Scott Benner 1:26:57
Thank you live in reasonably the same area. So she just ran outside and started yelling your name, you might find her off? Are you gonna get before you get out of breath? Or have to pee? Probably not.

Sarah 1:27:07
So. Oh, my goodness. I get out of breath walking up the stairs for good reason. This baby's healthy. So that's good. Good for you.

Scott Benner 1:27:14
I'm excited. Alright, so let me know. When I tell you what, it's October now. When the baby's born, you send me an email. Tell me all about the baby. And at the end of this episode, I'll read your email. Oh, okay. Yeah, me like, we had this. You know what I mean? When we go from A to whatever, he or she, yeah, all that stuff. Let me know. I have a feeling

Sarah 1:27:39
but I'm waiting till birth for the sex.

Scott Benner 1:27:42
You want to say your feeling here. So it's recorded?

Sarah 1:27:45
Sure. So I think that her sex identity is female. Because I think that she, she moves when I say the name that we've picked out for female and I also dream about having a female child. So I'm curious if I'm correct.

Scott Benner 1:28:01
Now I'm curious. Excellent. All right now I'm definitely I sit on this one till I get your email and then this one goes up. Okay.

Unknown Speaker 1:28:07
Sure. All right,

Scott Benner 1:28:08
have a great birth. Congratulations, please tell your husband, you know, he'll get used to the idea. The baby only cries for like the first like handful of months. And then it really is just smooth. I'm lying. It's terrible.

Sarah 1:28:23
three dogs so we we've done babyhood just through dogs instead of humans.

Scott Benner 1:28:28
Yeah, get a saddle for one of those dogs to see if you can teach the kid to ride it that really would make my day if you can figure that out.

Sarah 1:28:34
actually really hurts the dog's backs. It's not.

Scott Benner 1:28:37
Nothing's fun anymore. There the world used to be free when you didn't have to worry about other people. Like the 70s. I know you don't know about it. I mean, it was great for the people didn't care and the people who did care, really terrible as I'm looking back now, but I used to get bullied by this kid. When I was little, and nobody thought anything of it. Just there was Nope, no one stepped in. My parents were like, yeah, figure it out. toughen up, you know, that kind of thing. Now this kid would be arrested. He used to hold us underwater in a pool.

Unknown Speaker 1:29:08
But that's assault.

Scott Benner 1:29:11
Yeah, back then. It was they call it a life experience. It was it was a How do you turn yourself into the person that that crazy person doesn't want to drown? That was pretty much my summer that year. like you'd want to go to the pool because it was hot. But you're like this kid Craig is gonna hold me underwater. You know, if you're listening, Craig wasn't fun. Just so you know.

Unknown Speaker 1:29:34
Yeah. That was mean, Craig.

Scott Benner 1:29:35
Yeah, no kidding. Although I have to say, I did develop a lot of personal skills. Like you know how to, like, make people like you and you know, do a little song and dance to keep things from, I don't know, maybe the podcast would suck if Craig didn't try to tell me what I was. And don't give him all right. I'm with you. He didn't do anything.

Sarah 1:29:57
My husband taught one of the Aussies to jump up on the nightstand into crib so it can soothe the baby so that we don't get.

Scott Benner 1:30:04
So your play here let me make sure I understand this we're finishing up your husband's your husband's idea was if the baby should get uncomfortable at night needs some soothing. You've taught the small smaller dog how to go up on a nightstand and into the crib so it can cuddle with the child.

Sarah 1:30:21
Yeah, we've too many Aussies so he taught the smarter of the Aussie how to, which is not safe. I acknowledged this but maybe when the kids bigger

Unknown Speaker 1:30:30
screw all that if you do that. I want that on video. I know I

Sarah 1:30:35
can send you one of the dog doing it without a baby 30 knows how to get in and out of the crib bites.

Unknown Speaker 1:30:39
Oh, seriously. Alright, yeah, he

Unknown Speaker 1:30:41
taught us how to do

Scott Benner 1:30:44
that to me too. Okay, here's the problem with you and I we could talk forever. So we're gonna stop now. Thank you. You're very welcome. Have a great day. I really appreciate you giving your time twice like this. And I will I will double save this put on an external hard drive a thumb drive and, and I'll I'll remember the entire conversation so I can reenact it if I

Unknown Speaker 1:31:04
sounds good.

Scott Benner 1:31:10
A huge thank you to one of today's sponsors. Je Vogue glucagon, find out more about chivo Kibo pen at G Vogue glucagon.com Ford slash juice box, you spell that GVOKEGL Uc ag o n.com. forward slash juice box. I'd also like to thank the Omni pod tubeless insulin pump, check out Omni pod.com forward slash juice box to learn more to find out if you're eligible for that free 30 day trial, or to just get started on the pod.com forward slash juice box.

And now let's have a little update from Sarah. Hey, Scott baby came at 36 weeks due to complications and is now three and a half months and healthy. I went from 150 units of insulin in my last week of pregnancy to using humor log a couple of times a week while breastfeeding. postpartum kicked me back into honeymoon. So I'm enjoying it while I can. pregnancy and diabetes is really hard, but it's well worth it. I encourage anyone interested in becoming pregnant to find an entire medical team to work with that they fully trust. Baby girl wouldn't be here without the knowledge of the MFM that I worked with. And surprise. The baby girl's name is Scott. Alright, it's not really Scott. But I mean, one day one of you is going to name a baby after me. just takes one. I think I have a dog right now named after me. But that's not. I mean, it's nice. Don't get me wrong, but I'm looking for a human being. Thank you so much for listening. I'll be back soon with another episode of the Juicebox Podcast.

#487 From Russia With Sarcasm

Sophia is my favorite listener.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to Episode 487 of the Juicebox Podcast.

If by the time this episode is over, you have not fallen in love with Sophia. There may be something wrong with you. big challenge, but just I, I love this episode so much. I just had the greatest time talking to Sophia, I'm so excited, I just want to get to it. So nothing here on the Juicebox Podcast will be considered advice, medical or otherwise, please always consult a physician before making any changes to your health care plan or becoming bold with insulin. Whether you hear this, you are going to have such a good this is going to be the best. I don't know how long this one is, but however long it is, it's gonna be the best part of your day. And if it's not your money back, what do you think of that in money back guarantee on today's episode

when I rush through all that there's so much music left. We're not really getting to it any quicker. I messed that up. Oh, here comes this episode of The Juicebox Podcast is sponsored by the Dexcom g six continuous glucose monitor. And by the Contour Next One blood glucose meter. Learn more about dexcom@dexcom.com forward slash juice box you can get started with the G six or learn more at that address. And to find out about the Contour Next One blood glucose meter, you need to go to Contour Next one.com Ford slash juice box it is the best meter I've ever used. That's it there's I could say a lot of other things about it and I will in the ad later. But for now best meter ever used contour next comm forward slash juicebox Okay, so the recordings running to see you know are you by yourself? Are you Is there a parent with you? Or What's the situation?

Sophia 2:24
I'm by myself but the parent is in the house.

Scott Benner 2:27
Okay. Well, I'm really excited to do this with you. Are you nervous?

Sophia 2:33
A little. And that's certainly reflected in my blood sugar's today, but I think I'm calmer now that we've started Good,

Scott Benner 2:41
good. Well, there's no reason to be nervous. We're just gonna talk that won't be trouble. But what happened to your Well, I'll ask you in a second. Introduce yourself first. You can tell them just tell me your name.

Sophia 2:53
Hello, my name is Sofia. I'm from Russia and I was diagnosed in 2018 2018.

Scott Benner 2:59
So how old are you now?

Sophia 3:01
I'm 14.

Scott Benner 3:02
were you diagnosed? And you were 11? Yes. Okay. And you're in Russia right now. That's where you live? That's where you were born? Yes. Okay. How did you find the podcast?

Sophia 3:14
I, I joined a lot of groups. When I was first diagnosed, I looked at Reddit and beyond type one. And I saw a lot of people mentioned it, but it took me like a year and a half to actually find it. I go, I searched it on YouTube. But some other podcasts kind of showed up. And I just gave up after their first dry. Oh, I'm

Scott Benner 3:37
sorry. I don't do a very good job with YouTube. Should I try harder? Do you think?

Sophia 3:42
I think it was the only social media I was really acquainted with. So that's the only place I knew where to search.

Scott Benner 3:49
Gotcha. All right. Well, maybe I'll put some more effort into YouTube one day, we'll see. Okay, so you're diagnosed? Do you know anyone? Like who has type one diabetes besides you?

Sophia 4:03
I didn't know that existed in that's funny, because I had the person who sat next to me in class for a year and a half was type one. But I didn't know that they were type one. They just had this weird device on them constantly that beeped and nobody knew what it was because they didn't tell anybody.

Scott Benner 4:26
No kidding. So Oh, so you you don't feel like you know anybody in the world with type one. But the kid who sits next to you in class has it but doesn't tell anybody that they have it.

Sophia 4:35
Exactly. And I watched like accidentally six videos a year before I was diagnosed with people with type one and they said it but I never paid attention to it

Scott Benner 4:45
because you didn't know what it was and had never heard of it before. Yeah, that's interesting. And strange. What was it? Well, I never got back to my original question. I'm gonna forget it. If I don't ask Hold on a second. I might have forgotten it. We were talking, and I wanted to ask you if it'll come back up. I lost my question already. Darn it.

Sophia 5:06
I think it was about today's blood sugar's Oh my god,

Scott Benner 5:09
Sophia. You should host this podcast instead of me. Okay, let's start over again. Where were your blood sugar's? Because it's afternoon for you, right? Like it's like five o'clock your time?

Sophia 5:24
Yes.

Scott Benner 5:24
Okay. And for me it's 10 o'clock in the morning, Arden's actually taking her sh t right now. And oh, I'm kind of watching it with my, the corner of my eye, making sure that her blood sugar doesn't get out of hand, but it's doing really well. Anyway, um, so you have you eaten dinner already today? Or have you not done that yet?

Sophia 5:43
No, I kind of wait usually.

Scott Benner 5:45
Okay, so where was your blood sugar? And then when did you start getting nervous and what happened to it?

Sophia 5:52
So when I woke up, I did everything I usually do I Pre-Bolus a the same lower glycemic index food. But where usually would have gone to 131 20 maybe I saw my first 220 and like, a few months. That's my father's interesting.

Scott Benner 6:12
So Oh, so your whole day? You've been thinking about this?

Sophia 6:15
Yeah, I actually I think like a few weeks.

Scott Benner 6:19
Oh my gosh, I'm

Unknown Speaker 6:20
so well, I'm

Scott Benner 6:21
sorry. I messed up your blood sugar. Is that coming back down now?

Sophia 6:24
Is 112 right now. So yeah,

Scott Benner 6:27
doing good. Okay, ours is actually 115. Right now she was 99 for a while in the like for the first 90 minutes of the test. And then it started to move. And so I texted her and had her make a couple of changes. And it looks like it's gonna hold here at 115 while she which is terrific while she's taking her LSAT. But okay, so well, first of all, I'm sorry, if you were nervous, like there's genuinely nothing to be nervous about. But I do have a lot of questions. I don't get a lot of emails from 14 year olds.

Unknown Speaker 6:59
So yeah.

Sophia 7:02
Well, I saw I actually listened to I think most of your episodes, and the ones I was most interested about were with people around my age. And I saw that from your 400 and something episodes, you only had 25. Maybe if that with people in the teens. And I thought that maybe it will be interesting to add on to that.

Scott Benner 7:28
Well, it definitely would be and I'm grateful it is I feel a little critiqued. Are you saying I don't do enough with kids?

Sophia 7:34
I don't think you should. I'm not particularly targeted at kids, because most of the controlling of the tape one is done by parents.

Scott Benner 7:45
You are incredibly mature. Why is that?

Sophia 7:48
I think it has something to do with the type one. I did everything practically myself because I wanted to.

Scott Benner 7:57
But in general, are you kind of a more? Have you always been like this like, like a little more mature than your age?

Sophia 8:05
I don't think I can say that. But I think I don't know. Probably not. I was kind of a weird child.

Unknown Speaker 8:17
Why were you weird.

Sophia 8:19
I was the kid in the back corner of the class. Kind of drawing on the desk instead of paying attention and throwing paper notes to people in the front.

Scott Benner 8:33
I'm just telling you that we've only been talking for a few minutes, but you feel like you're like 25 years old to me. Actually, I interviewed a 24 year old the other day, you're way more mature than she was. So I think that's it's just very interesting that you you know found something you're managing this yourself your parents don't help you with your blood sugar's it's mostly you.

Sophia 8:56
My mom actually has during the night because I will not wake up at all from anything other than probably an earthquake. Other than that, I just sleep through everything. Except if my blood sugars are higher than 200 then I will not get any sleep at all. For some reason.

Scott Benner 9:16
I have to tell you before Arden had diabetes, I could sleep through anything too. I'm not as good at it. Now. Although as I'm getting older, it's getting harder to wake up at night. So I understand how you feel about not wanting to wake up. Tell your mom I know. I know what she's going through being awake during the night but how are you? I

Sophia 9:33
feel bad. I feel bad about that since I can totally do it by myself. Except for that I don't wake up in seven nights. She doesn't get a lot of sleep because of that. And I do I always get it laughs

Scott Benner 9:46
you're still fresh in the morning and she's looks like she's gonna fall over.

Unknown Speaker 9:49
Yeah,

Scott Benner 9:51
well, what um, I guess let's try to figure out a little bit first about being diagnosed. So how did you first notice that If something was wrong,

Sophia 10:02
we didn't until the day when the doctor said I was an hour or two away from a coma. Oh,

Scott Benner 10:10
he took it right to the end. Hmm. So you wrote

Sophia 10:14
in an ambulance barely being able to read.

Scott Benner 10:17
While you were How do you know what your blood sugar was? Did they ever tell you?

Sophia 10:21
It was not that bad. Interestingly enough, it was 450 I think. But, um, I was laying in bed for a whole day I couldn't get up except for the one time I asked my mom for some water. And she brought me a sugary likes. I think it was soda. And for some reason, I just didn't want to drink that sugary soda. So I, for the first time, that day, got up and got myself a glass of water.

Scott Benner 10:51
The desire not to drink the sugary drink was the only thing that could get you out of bed. Yes. I wonder about that. I guess very few people will know about it. But that, that drive to drink water. When you're in DK a, it sounds really powerful. You know, it's just the everyone's description of it is always like they're just, they'll do anything to get water. And so yeah, so you're, you're basically just about dead, and then your parents figure it out and call an ambulance.

Sophia 11:25
Well, looking back, I actually had symptoms for a year and a half or so years, I would drink maybe three or four liters of water. And interestingly enough, I was so nauseous. Every time after drinking regular water, the only thing I could drink was carbonated water. And well, that was hard to get rid of to get a hold off. Sorry. And I just didn't drink Sundays because I was nauseous from water. But I was very thirsty.

Scott Benner 11:56
And the bubbly water is hard to find where you live?

Sophia 12:01
No, it's not. It's just once I drink it all, which was twice as fast as we thought we had to go to the store and get up more potent. We always underestimated how much how fast I can drink.

Scott Benner 12:13
I understand it was always difficult to find because you had already drank it. Yeah. Wow, that's crazy. And for a year or so. And so what were early symptoms, like did you lose weight? Were you like, what was happening during that time?

Sophia 12:27
I think it was so slow to develop that we didn't notice I had lost any weight. But it turned out I had lost around four kilograms or five, which is quite a lot.

Scott Benner 12:40
I would have to take your word for it because I didn't learn the metric system. But hold on. What's

Sophia 12:44
that? I'm not sure how many pounds that is sorry.

Scott Benner 12:47
Don't worry. I'm gonna find out right now. In pounds. I'll just ask the magic machine. Well, you lost almost nine pounds. Yeah. And how much did you weigh at that point? Do you remember?

Sophia 12:59
I don't know in bounds, but it was 28 kilograms. 29 kilograms. All right. I

Scott Benner 13:06
have the thing up now. It's you. Oh, wow. So you weighed 63 and lost 824. That's a big person. I'm

Sophia 13:14
sorry. Um, no, at the end point. I was.

Scott Benner 13:19
Oh, okay. I see. So you were 29 you came down from like, 37 kilograms. Yes,

Sophia 13:27
I didn't weigh myself so often. So that's probably it, but I'm not 100% Sure. Okay. Yeah, don't

Scott Benner 13:33
worry. You're not on trial. You don't have to answer exactly right. If you're wrong about something. No one's gonna come get you don't worry. I'm, uh, I won't show up at your house and be like, you know, when you're on the podcast, you said you wait 37 kilograms last eight, but it was really 39. And now I'm upset. Nothing like that. Wow.

Unknown Speaker 13:49
I hope not. All right. Could

Scott Benner 13:50
you imagine if that's what I wasted my first trip to Russia on?

Sophia 13:54
Yeah, there's so much to see not in the winter.

Scott Benner 13:57
Not in the winter. Is it a really harsh place in the winter?

Sophia 14:01
Well, this winter was really weird. It was almost minus 30 degrees Celsius, which is more than it was last year. And I stayed indoors the whole time. I would

Scott Benner 14:13
say so we have what's it like to go outside when it's that cold? Like, are you in like a giant jacket with a hood That only leaves like a little hole by your eyes? Or how do you do that?

Sophia 14:22
Well, I underestimated the weather. And so I didn't. I wore my regular jacket. And actually my own call failed after I came back inside. And once when I took it off, there were there was so much blood. And the only thing that changed was me going outside into the very cold weather.

Scott Benner 14:45
They had to test it at minus 30 your sign for you? How did you how did you how did you get a hold of the Omnipod in Russia?

Sophia 14:53
Oh, well. Give me for start for diagnosis. It's all kind of an open pill battle for sure. Let's,

Scott Benner 15:01
let's take your fight together. All right, I see you don't like the way I jumped around. That's fine. We'll start there.

Sophia 15:06
No, it's not that it's just there's there's a series of events leading up to that moment.

Scott Benner 15:11
I definitely want to hear them. Okay, so you ride the ambulance, you get to the hospital. What happens next?

Sophia 15:17
Oh, before I wrote in the ambulance, my mom was about to, like, make me go to bed. But she had her friend over. And her friends like saw me walking into the kitchen. And she said, This isn't normal. I think you should go to the hospital. You're not breathing enough. I was hyperventilating. So I couldn't take a regular breath. And all I remember was being Gary to the ambulance and then waking up in a cold hospital. Oh, my gosh, that sucks. Arden was panting to at the end right before we took her to the hospital. Like I've never heard anyone, like, except me had doing that before diagnosis. And that's interesting.

Scott Benner 15:58
Yeah, she was she was panting in her sleep. And like she was asleep and like, like, like a puppy. Almost. And there is an answer for why that happens. It's your body tries

Sophia 16:09
not enough oxygen to the brain. Right?

Scott Benner 16:12
Yeah, yeah. And your body's just trying, like desperately to like it's trying to stay alive. So you get to the hospital. And how long were you there?

Sophia 16:22
in the emergency room, I think it was 22 hours. And then I wrote in the ambulance to a regular Children's Hospital and they stayed there for 10 days, I

Scott Benner 16:35
think they figured out pretty quickly at the emergency room. What was wrong?

Sophia 16:39
Oh, then you immediately when they came over, they said, Alright, let's test your blood sugar really quick. And they tested it and was like 450? And they said, Yeah, you're going to the emergency room? No. So they did that very quickly, actually.

Scott Benner 16:54
So did you feel much better by the time they moved to the children's hospital or not yet.

Sophia 17:02
I was kind of in a state where I just laid in bed. And the first few days, I just passed so quickly, I was just sitting in bed not doing anything. But I have company. So the way the hospitals here work, they're just large rooms, and with six or seven patients in them. So they're like six or seven beds in one room. And there was an annoying seven year old, constantly ran around, trying to make friends with everybody. And then there were a couple of older kids there too.

Scott Benner 17:40
No kidding. Do you remember what any of them? Were there? Four or no?

Sophia 17:44
Um, all of them. Were there for type one other than one who was there for I think, a high blood pressure.

Scott Benner 17:54
Oh, wow. So you and a number of other children were all diagnosed kind of on the same day?

Sophia 17:58
Well, it was the end, it was the endocrinal logical floors. So the only undue issues there

Scott Benner 18:09
right now. But still, that's kind of crazy. I remember being taught how to count carbs at the hospital with eight other families that whose children were all diagnosed in that that couple of day period that Arden was,

Sophia 18:22
that's the same way. It was. They had diabetes school like they call them. And so with four or five days, it was held in one room, and like two or three hours long, and all of the parents would go and spend that time and write notes. And it was all pretty basic stuff. And they had a really weird way of teaching that I demanded to be in the room to, for them to also teach me and they had such a weird way of teaching carb counting

Scott Benner 18:57
didn't make sense to you.

Sophia 18:59
They didn't count carbs, they counted bread units, if I'm translating correctly. So every 12 carbs was one bread unit or something.

Unknown Speaker 19:11
Right unit. Now

Scott Benner 19:11
I am going to tell you that I can't completely remember where but I've heard that phrase before. Yeah, and I don't

Sophia 19:22
think nobody has ever heard it before.

Scott Benner 19:24
I feel like oh, it's part of the glycaemic. So how much bread Can I wait? I'm internetting 2013 somebody got a presentation bread exchange unit, a guide for diabetics. Ready. People who suffer from diabetes and therefore require insulin can use this measurement unit to compare the blood sugar effective effectiveness of carbohydrates and different foods. But this is why the podcast is popular because when people write about diabetes, they make it very confused. Using IKEA according to a German dietary regulation, one bread exchange unit, or one b e u corresponds to a quantity of food that contains 12 grams of digestible and then therefore blood sugar effective carbs, that's what they thought you.

Sophia 20:16
Yes. And it was so confusing, it was more confusing than using regular carbohydrates. And also they said, Every six spoons of porridge translates to 40 grams of carbs. And that's the way we did things. There are the people who brought their own scales and measured their food, which, and they had much better blood sugars.

Scott Benner 20:41
Well, yeah, because this is convoluted. And I just read it. And I, if you ask me right now, like under penalty of death, if you said to me, Scott, you have to explain to me what you just read. I don't know that I would understand that enough to say it. There's some I

Sophia 20:57
mean, me and my mom immediately threw that idea out and started counting carbs. Yeah, because he read a lot about it. And he figured out that that's probably not the best way to do things. Good. So

Scott Benner 21:09
your mom helped. So do you get insulin pens? Do you get needles? How do you manage in the beginning?

Sophia 21:19
You have a choice? Well, in the later times, when I visited my underwear, I had a choice. But first, they gave me a noble rapid pen, and to learn to spin.

Scott Benner 21:31
So you were just you were MDI, you were just shooting some lantis and covering your meals? Did you correct blood sugars? Or did you just give yourself insulin at mealtimes?

Sophia 21:41
And in the hospital, or after

Scott Benner 21:43
just moving forward? Like as you got home and got settled?

Sophia 21:48
Well, nobody explained to me the concept of correcting highs. And also, not lows. So my mom thought that, since regular people's blood sugar went down to 60, sometimes thought that is completely normal for boys also. And so I didn't correct to loans to 60 or 555.

Scott Benner 22:16
How did that? Did? Did you feel okay at that number or no? Not mentioned to your mom, you thought she might be wrong.

Sophia 22:26
I said, I said, Are you sure this is the way this works? And she said, Well, no, that's honest.

Scott Benner 22:35
I would take an honest answer, you know. So you guys figured out that was a little too low. And where did you start correcting?

Sophia 22:43
We asked the endo. And she said that's so not the way to do things. No. And

Scott Benner 22:51
she started telling you about bread units again.

Sophia 22:54
She didn't even know they taught us regular carbs. She just took all of my insulin carb ratios and basil rates. And she just said, Okay, well, you seem to be doing fine. Go on.

Scott Benner 23:10
Good luck. Oh, that's, well, it sounds like your mom was trying to figure things out in the beginning. And she's using the internet, which was ended up being helpful, I guess, overall. In that first year. What were your a onesies? Like?

Sophia 23:25
I think since I was not correcting the lows. Mine was 6.5. But it was not because of good control. I was still having high blood sugars regularly is just because a lot of the time I was low and didn't do anything about it.

Scott Benner 23:42
How did you know that? That's like, did you learn that from the podcast?

Sophia 23:48
No, I just kind of I knew that they would see is the average blood sugar of three months. Right? So I kind of thought that well, since I was having a lot of lows. That's probably why Sophia,

Scott Benner 24:02
let's Are you really smart? Like forget that you drew on the desk in school. Do you understand math?

Sophia 24:10
I would say yes. But don't follow up with my teachers. Okay, well, listen,

Scott Benner 24:15
I had a problem in school as well. I did not like school very much. But I was uh, I was okay smart. I just didn't like what was going on. The reason I ask is because you you I just assumed you heard on the podcast that variable blood sugars weren't good for you Even if you got a lower a one c but you figured that out by yourself. When I talked to a lot of adults who just tell me well the a one c 6.5 were good and I'm like no Look, you're like 350 here for an hour or two and then you know your your crash down to, you know, to 60 and you said you were 60 for an hour. You're just you're you're just confusing the test. You're not you know you don't need you do have to say 6.5 but you didn't come to it kind of authentically. And it's definitely not good for your for your overall health. But you just figure that out when you were 11

Sophia 25:09
Oh, probably. Well, I was diagnosed a month before I turned 12. So 12

Scott Benner 25:17
so I'll say it again. So you finished that you figured that out when you were 12?

Sophia 25:20
Oh, me and my endocrine No. So I told her I was having a lot of lows. And she said, What are you when she seems good? But I said, what I'm having a lot of lows. She said, Well, don't sorry.

Scott Benner 25:35
So So via your your endo didn't really get it. But you got it. And you just made this change in Iran. So how do you make a change like that when you're completely by yourself? Like, how do you figure out how to stop high blood sugars and, and not have rebound lows and things like that? What did you do?

Sophia 25:51
Well, when I was an MD, I thought everything was great. I thought EA my blood sugar is so good. I met I'm measuring it three times, and C is really good. I guess I'm doing a great job. But two weeks after I came from the hospital, my mom surprised me with a freestyle Libra. And now looking back on the graphs, I was at a roller coaster, it was okay, you from a period of two hours for me to go from 260 to 50, to an urgent low to 100. And up and down and up and down. And there was also a thing where once I asked my mom, after I was diagnosed, how many carbs Can I eat without insulin? She said, Hmm, I don't know. 10. And so I started eating 10 carbs regularly without taking any insulin. And my blood sugars are going up because of that. And it was very confusing.

Scott Benner 26:55
Sophia, I mean this in a really good way. So I don't want this to get lost in translation at all. But right now people are listening to this adults. And they're thinking, Oh my God, this kid figured all this out when she was 12 years old. And I'm over here struggling. You're making people are just like, Ah, what am I doing? I can hear you all thinking right now, by the way, just the the like, how did this kid just get but you're you're not what it's fascinating. Like, it really is fascinating listening to you talk about seeing something that can appear to be so complicated to people. But maybe because of your age, you just looked at it in a simple way. Like you you sit. Is that why you like the podcast? Like because I'm, you know, I'm 50? Right? And I live in another country and I'm talking about something I don't have that you have. But you like this show enough to listen to every episode of it. So what is it? Well, hey, hey, listen, there's no reason to tell people that just say you listen to ramp. Yeah, we'll try again. So you listen to every episode, say Yes, I did. Yes. Exactly. Sophia, thank you. And but my point is, what is there about? I want to understand what it is about how I'm talking about diabetes that resonates with you. And and and jives with how you think about it, because I'm trying to figure out how you think about it because you're very clear minded about it.

Sophia 28:23
Oh, so obviously because of your charming personality. And okay, so

Scott Benner 28:32
don't be sorry. lean into that. sarcasm. I'm good with it. Don't worry about it.

Sophia 28:38
I think it just because something made sense. Finally. Nothing made sense. Previously to that in diabetes also, always second. I when I was in school, I would just know. Okay, I have a sandwich for lunch. Let's just Bolus to units. Oh no, I have 300. Mom says t Bolus, another three units that make sense. We just move on. And finally something made sense or maybe just Bolus a little bit earlier. Maybe don't eat sugar and not Bolus for it because it's under 10 carbs.

Scott Benner 29:18
So the common sense stuff just started to resonate a little bit and the timing idea. And you think of that now on your own like you Pre-Bolus I imagine but what is your Awan see now?

Sophia 29:30
I will we haven't measured it since August. It was 5.7. But I my clarity says it'll, it's probably around 6.6 right now because I hit a big Grossberg and my blood sugar's Well, I had to adapt really quickly because I needed twice the amount of basil and way more insulin and I was still being high. So that was a little hard. But other than that, I think I know the basic The principles of it. Yeah,

Scott Benner 30:01
well, so when that's how long did it take you to recognize that you needed a significant amount more?

Sophia 30:09
Probably since one one day my blood sugar's were perfectly stable with 15 units of basil. And the next I needed a seven extra correction bonuses and I thought that this is normal. Let's do a Temp Basal. Next day that Temp Basal didn't work. Let's do another Temp Basal. And at some point, I realized, yeah, this is not going to go away should probably just change the regular Basal.

Scott Benner 30:37
I'm so happy for you.

And I'm happy for you as well, because you're about to find out about the best Darren diabetes told that I've ever seen in my life. That's right. I said best on the Dexcom g six continuous glucose monitor. Why don't you have one? Why have you not at least looked into it? I mean, it shows the blood sugar. Constantly. Speed, direction. And number. That's live. Look, understand. I'm saying like you are looking like, never hear that. On the news. They're like you're looking live over but you're looking live over your blood sugar. It's 117 and stable. That's Arden's blood sugar right now, two and a half hours after Chinese food. Actually, it's about to update again. Hold on a second. Let's see if it changed. And it has 115 which doesn't surprise me. Why doesn't it surprise me? Because let's see, about 20 minutes ago, I noticed that the blood sugar looked a little sticky, meaning I didn't think it was gonna break off that line it was at around the 121 117 mark. So I asked Arden send a little text and I said I think we have to Bolus a little more for this food. And she did. And now we're starting to see it move. Now I know the number only move to from 117 to 115. But I can see on the graph that it's beginning to trend down, I can see the Bolus working. It's fascinating. And it's available to everyone who has a Dexcom g six, find out more@dexcom.com forward slash juicebox. And don't overlook that I'm looking at don't overlook that I'm looking Don't think like that. Let's try again, don't overlook that I can see Arden's blood sugar on my iPhone, and you can to where your Android phone. As a matter of fact, 10 people can 10 people of your choosing can follow blood sugars, if that's what you want. And if that's not what you want, don't do that. Just keep the data for yourself. dexcom.com forward slash juicebox. links in the show notes links at Juicebox Podcast comm get started right now. What do you think the most overlooked diabetes item is like the thing that you just don't take that seriously, that seriously is wrong word, the thing that you don't pay close enough attention to when you're purchasing. Right? In my opinion, it's your blood glucose meter. A lot of people just take the one the doctor gives you where your endo writes a script for one or your nurse practitioners like here, there's one in the drawer take this one, or blah, blah, blah, blah, blah. How often do we actually look like would you buy a car that way? No. Would you buy a house that way? No. Would you rent an apartment that way? You would not? Would you even buy of avocado without squeezing it first? Yeah, wouldn't. But for some reason, he just took the meter they gave and you're like I guess this is good. But you know what could be better. The Contour Next One blood glucose meter. Right? It's a ripe avocado in a world full of lemons. Contour Next one.com forward slash Juicebox. Podcast, incredibly accurate meter. I'm sorry, my voice just broke an incredibly accurate meter with second chance test trips, meaning you can touch some blood not get enough, go back get more without messing up the test or ruining the strip. It's got a super bright light for nighttime viewing as well as a nice big, visible screen. Except you know what the meter is not that big fish in your pocket, your purse, your bag, wherever you carry your gear. It won't be in your way. It'll just do what you need it to do. Contour. Next One is the meter we use. It's fantastic. It is the most accurate one I've ever seen. Contour Next one.com forward slash juicebox. It may even be cheaper than you imagine. Go check it out. I really am that. I don't know you well enough to tell you. I'm proud of you. But I felt proud while you were saying that like it is absolutely astonishing that you figured all of that out. And I think again that my astonishment comes from the number Have adults who I've spoken to who can't be that intellectually agile when something's happening, they get so stuck in the baseless 15 it Okay, maybe it needs to go up, but I'll try 16 that didn't work? Well, we'll try that for a week and see what happens. Like you just pushed it up seven, you went from, from 15 to 22 a day.

Sophia 35:26
Yeah, but it wasn't in the course of a couple of months. So it wasn't

Scott Benner 35:30
immediately. So it took me a couple of months to I understand, by the way, that's it's a huge jump, it's 50% more. And so, but you did it by yourself, you made that decision.

Sophia 35:42
I, my mom knows a lot about my diabetes, and she helps me a lot. I do most of the I do a lot, all of the meals and corrections by myself. But like once a week who I will tell her my problems, then she'll say, well just adjust this. And so then that makes sense. I love it.

Scott Benner 36:03
I love how simplified in a simplified way you think about the whole thing,

Sophia 36:07
I get very stuck in an idea that my insulin to carb ratio was always this, I can't change it now because it was always this. And then when I tell my mom a week later the problem she said, Well, obviously you need to change it. It's not working.

Scott Benner 36:22
That's amazing. I'm so happy. I really am like this is I you understand the beyond the short email correspondence that we had, like in my mind, I'm sitting down this morning to talk to a 14 year old, I don't know who you're going to be like, I don't know how this conversation is going to go when we start talking. And it took me a couple of minutes in the beginning to adjust myself because I feel like I'm talking to like a younger, less experienced version of Jenny right now. Not like I'm talking to a 14. Do you know Jenny? Do you listen to the episodes with her?

Sophia 36:58
Yeah, I listened to all of them. See you were getting so good at this pregnancy ones.

Scott Benner 37:04
Really? Do you ever think you'll have kids?

Sophia 37:07
I don't want to think about that right now. But it was interesting to see how people are just in new situations.

Scott Benner 37:14
You are my favorite listener, Sophia, if there was a T shirt that said favorite listener, I would send it to you there is not one. But if there was you'd get it. That is I'd even make an award up. And then if you one day, we're not my favorite listener anymore. I'd have to make you mail it to somebody else. But let's not get involved in all that awards things. But you're seriously my favorite person. So but I don't want to take you off your path because you wanted to talk about things like that. So you came out of the hospital with your MDI and and how did that go? What happened next?

Sophia 37:45
Well, my mom got me the freestyle Libra. And I thought, well, why doesn't it tell me when my blood sugar goes low? I don't want to keep checking. So I started Googling what else is out there. And I saw that Dexcom exists and people like it. And I started telling Mom, I need to Dexcom. Mom, let's find a way to get it. And we found a store online that sells them. And there's a way to get it. It's not covered here. But we found a way to get it delivered. And I got the G five then I started doing more research and I saw that there are things that make you not inject seven times a day. And that was interesting to me because the because the Omni pod seem so much better than other pumps, because I don't like being tied to something. And I have a cat. And that's probably something that played a major factor. The cat said, Yeah, she likes to chew stuff and she loves playing with strings. So the obvious conclusion was this set a good idea.

Scott Benner 39:03
I'm thinking Are you gonna be like Ilan musk one day or something like that? Well, you remember me when you're famous and rich, please, Sophia.

Sophia 39:12
Yes, send your check and remind I

Scott Benner 39:14
don't need to hold. Well, listen, I don't want to say no to the check. But I I just meant like, just, you know, throw me an email like, you know, when you're banging around the world doing amazing things. Like I want to be able to say like, Oh, I know Sofia, because I was I'm trying to imagine myself at 14 years old. I think I was just like a like a barely alive idiot. Do you know what I mean? Like just barely moving around like a blob. Basically.

Sophia 39:47
Who you ask my teachers will agree with you.

Scott Benner 39:49
Oh, really? Well, they don't get to hear you talk about this. Are you? Are you saying that when I was 14 that was something I might have been good at, but nobody bothered to find out.

Unknown Speaker 39:59
Exactly.

Scott Benner 40:00
I'm gonna accept that from you. Also, you might be my therapist now, too. So. So you're just Are you good at diabetes? Because it's coming naturally to you? Where is it because you're trying to take care of

Sophia 40:15
yourselves and come naturally at all. It took a lot of work to reroute my ideas since my endo and the hospital was telling me one thing, I check every two hours, if you're high Bolus check in two hours again, adjust basil, if it's three days in a row, the same thing. And it was they make it sound like such an exact science. But there's so many factors that play into it. If I know that I'm having a stressful day, the next day, I need to make it Temp Basal, but they won't tell me to do that since they will be scared that I will go low because I'm not 100% sure that they're my blood sugar's will go up. And I had to reroute a lot, and my mom, and make my mom listen to your podcast,

Scott Benner 41:04
as well. So you had to that's interesting. So you found that a side of her, started figuring out things you wanted to do. And then you said to your mom, this must be interesting. You went to your mom, a Russian woman and said, there's a guy in America with a podcast, and I want you to listen to it so we can learn how to take care of my blood sugar better, and then she grounded you what happened next?

Sophia 41:29
No, I said, there's a guy with no medical degree that's telling me he knows better than my endocrinologist. I spent a lot of years in medical school, and I'm gonna listen to him. No.

Unknown Speaker 41:43
And this one, okay with your mom?

Sophia 41:47
She said, Yeah, sure. If that makes you happy.

Scott Benner 41:53
I don't know why I just I love everything about this conversation. It's absolutely fascinating. So she's like, she didn't ask, she didn't say like, Well, I'd like to listen to it before you do that.

Sophia 42:04
Oh, no, she listened to it. She said, Well, he sounds like he really knows what he's talking about.

Scott Benner 42:10
You tell her I'm very good at pretending that I know what I'm talking. Just tell her my confidence comes from. I don't know where? Well, that's not true around diabetes, my confidence comes from experience and seeing it happen over and over again. And being able to break free of kind of old ideas about that management of diabetes, kind of like you were talking about, like, you know, there's this one thing that you wouldn't know, because you're young, and you haven't been involved in the space. But people used to say all the time that you know, your diabetes may vary, you know, like, it's what happened

Sophia 42:48
to him in the hospital.

Scott Benner 42:50
Right? Right. What so what happens to you, Sophia, won't happen to my daughter or won't happen to a 50 year old guy who's listening right now who has type one. And I understood the kind of overarching sentiment, which was, variables are different for you than they are to somebody else. And so it's going to be different, but I just kept thinking, if you boil it down far enough, it is all happening the same way for everybody, right? Like, like, let's find common ground for everybody with Type One Diabetes. And to me that common ground is that if you have the right amount of insulin, and you put it in the right place, that you can keep your blood sugar stable and low. Now, it's not as simple as that as as that makes it sound. But it is true, then there are a couple of outliers, right? There are some people, for instance, who have gastroparesis. You know, they have a stomach emptying problem. So they can't kind of count on when their blood their foods going to be digested. But taking those sort of outliers outside out of the equation, everyone else using insulin is, is experiencing the same core experiences, right? And if you're basil is right, and if you Pre-Bolus meals, meaning if you line up the, you know, the action of the insulin with the impact of the carbs that you're eating, you won't have spikes at meal times. It just it's just true. Like, there's no, there's no scenario where if you do it, right, your blood sugar will spike as

Sophia 44:29
well, except for the case where you're very stressed, or you had too much exercise and didn't account for that.

Scott Benner 44:39
Right? No 100% there's going to be variables that impact your blood sugar. But if you go back to what I said, even if you're very stressed, or you had exercise that you didn't account for that was going to make your blood sugar go up. The truth is, and this would be difficult to do but if you knew the stress was coming, and you Bolus for it, or if you knew you could to impact it like it's not easy. I'm not saying it's easy. But Arden's blood sugar right now during the, the sap testing is a good example of that, you know, leading into the test, I assume that test was going to be at least burdensome may be stressful, I wasn't sure. So we increased the power of Arden's insulin going into the test, so that she wouldn't spike. And, and so had she magically not experienced any kind of like outside influence, we could have just taken that insulin away. But we we looked at it and got ahead of it. And I think at that core, whether it's you, Sophia, 14 years old, freezing your butt off in Russia, or, you know, some guy named Bill living in Florida right now, like, that is the truth for everybody. And I can I feel very comfortable standing behind that. So I'm just super happy that you that you found this and that it's been so helpful for you so far. So okay, so you've

Sophia 46:07
also got a problem? Yeah, moving on. Right?

Unknown Speaker 46:09
Yeah, please.

Sophia 46:11
Be on the board. For some reason, my mom thought that pumps don't work, and that they always inject more than you want them to inject and they are bad, for there is just the stereotype of pumps being bad in your head. So it was very, very hard to convince my mom.

Scott Benner 46:34
So what does she hear like a new story where someone's insulin pump, like went crazy and wrap the cord around their neck and choke them or killed him? Yeah.

Sophia 46:45
And maybe it's I'm not sure how older pumps were. But now they seem just very stable. Yeah.

Scott Benner 46:53
No, I agree with you. It would be like hearing. There was this news story once, where they said somebody's brakes didn't work. And they just like, drove off a cliff. And if you heard that news story, and then said, Okay, well, then we can't drive cars anymore. Right? Like, it's, you know, yeah, so it's a weird leap to make, but I understand it as well. Like, I understand her if she heard that. And thought that was true, then I would, I would understand her being concerned about so how did you talk her into that?

Sophia 47:25
I took me going to the Enzo, and making viendo tell my mom that pumps are perfectly safe.

Scott Benner 47:33
You put the endo in charge of it? Yeah.

Sophia 47:36
So and also, there's the bonus, if anything went wrong, we could always blame the endo.

Scott Benner 47:42
Get you setting up ways to get out of this scenario if you need to? Like, are you good at manipulating your mother and other parts of life? I know she's gonna hear this. And you might not want to give up your best secrets, but you have her doing things that she doesn't realize she's doing?

Unknown Speaker 48:00
Yeah.

Unknown Speaker 48:01
You don't want to admit to them out loud.

Unknown Speaker 48:03
No. Good for you. Yeah,

Scott Benner 48:05
keep keep your game going. Don't Don't give it up for me. But that's really even that's a next level idea. to like, you know, my mom has a problem with this. I'll end around her to the endocrinologist explain this, the endocrinologist get her on my side. And so she can impact my mom, my mama, listen to the endo, where she might not listen to me. Serious. Yeah.

Sophia 48:26
And the endo after hearing us talk about pumps told us if you want a free pump, go on this waiting list that usually takes around three years for people to get a pump. And the pump is a couple of years old. And it was the very old Medtronic pumps, I think. And then she gave us a manual in case we wanted to buy your own pump. But the pumps were all Medtronic pumps and also very old. So I said, Yeah, that's not going to work. And I'm going to, and then I went and I did research and on the site where we bought the Dexcom. The Avenue board was there. And I decided this looks way better than my cat chewing through a tube or me not being able to shower without disconnecting everything. Right.

Scott Benner 49:20
Sophia, you promise me something? If I asked you nicely. When you mature to a full adult, please don't use your superpowers for evil. Okay. I want you to use them for good, because you found out how to get like an insulin pump in a Dexcom into a country where they're not sold. So I get emails all the time. A lot of them from Saudi Arabia actually, where people want to buy stuff like that and can't find it anywhere. I know a gentleman Oh,

Sophia 49:50
it was so it was a very quick google search.

Scott Benner 49:55
You tell me old old heads don't know how to use the internet.

Sophia 50:00
I wouldn't say that directly to your face.

Scott Benner 50:03
But you mean it? I understand. Yeah, yeah, I actually, I believe I know a family who flies from the Middle East to America to buy supplies and goes back with them.

Sophia 50:13
Just interesting. Yeah. Why wouldn't they like, find a friend who lives in that place? Make the friend buy it and ship it with MIT to their post office and save money on a plane ticket.

Scott Benner 50:27
Sofia, what would you think if a couple of times a year I took life questions from the audience, and just got you on to answer their problems for them? We'll call it common sense with Sophia. And they'll ask big long convoluted questions, and you'll just give them one sentence. You could be my child, I think, the way you think about the diabetes and everything, and and even, like, just kind of like life stuff. Are your parents similar to you in thought? Or do you find yourself thinking differently than them?

Sophia 51:04
Um, well, I think I think I kind of took something from the both of them. My dad has a very logical brain. My mom is very artistic. And I love art. And I did music for a long time. But I also love math. And I want to become a biophysicist. I think that's happening. What is your

Scott Benner 51:33
looselay? Not I got my asking where he works. But what kind of work does your dad do? Is he an engineer?

Sophia 51:40
I'm not currently but he does something with logic.

Scott Benner 51:46
Yeah, something was said something you can't say, Sofia, do you realize that I only understand Russia through movies that are made in America.

Sophia 51:55
All the movies are either Russia's drinking vodka in some apartment, or them being a mass murderers, or these mafia leaders, which is very not true.

Scott Benner 52:13
So you're telling me that you're not wearing a giant, like mink hat right now with big earflaps.

Sophia 52:22
We have one of those. And because it is very warm in the winter,

Scott Benner 52:28
can I tell you something? I have one. I'm such a baby when it comes to the cold that if I go outside, I have one I wear for like shoveling snow or doing stuff like that. And it is the it's I think mines made out of rabbit if I'm not mistaken. If you put it on in the house and don't immediately go out in the cold, you start to overheat. Like it's so warm, it's

Sophia 52:54
warm, and it's practical. Like you don't have to wear a hood, then wear another hat. You can just put that on. It's ugly, and

Scott Benner 53:02
it looks terrible on me. It looks like my head is trapped in a fuzzy box. But but it's so warm. I would never make fun of it. But in my mind, like you're wearing one of those right now with the front of it folded up. And when you said it was minus 30 degrees outside, I didn't even want to tell you but if you told me I had to go outside it was minus 30 degrees. I would cry. Just please not

Sophia 53:26
minus 30 currently, but it was a month or two ago.

Scott Benner 53:31
Well, if you if I was there with you that day, and you said we have to go outside, I would probably just cry a little bit like you'd see a tear in my eye and you'd be like, Oh my god, that guy's 50 and he's crying. And

Sophia 53:40
the snow was up to my shoulders, I think really? Well because it was well, I think part of it was shovel to be that way. So the past will clear up but the sentiment is still there.

Scott Benner 53:53
Yeah, no kidding. Yeah. So you're so this is not what's going on right now. You are not No, no, you don't make extra money. But you don't make extra money by like, taking apart declassified nuclear materials and selling them on the black market. Like that's not your after school job or anything like that.

Sophia 54:13
No, definitely not.

Scott Benner 54:16
Sophia, I love how long you pause. And then we're sarcastic. Thank you so much. Really appreciate that. Where did you learn English? so well? Is that just something you do in school?

Sophia 54:27
It is something Did you know that we do in school, but I think mostly because my mom made me since I was a baby learner as a second language. Does she really want she thinks that it is the only language that is close to being universal? And she wanted me to have that skill.

Scott Benner 54:47
That's really cool. And Does your mom speak it or did she have to teach?

Sophia 54:51
Oh, she does. She does and my brother doesn't my father does.

Scott Benner 54:54
Oh, you have a you have siblings that is there any other autoimmune stuff going on in your family? anybody's thyroid Weird have celiac disease, anything like that?

Sophia 55:02
No, I'm the first one. As far as I know that you have any problems. Wow,

Scott Benner 55:09
wow, you're doing such an amazing job. Like, are you aware of how well you're doing?

Sophia 55:14
Um, well, my blood sugar started going out. So that means I'm still nervous. But I think he's going down. No.

Scott Benner 55:25
Well, I don't mean doing well now on the podcast, but you are doing well now on the podcast. But I mean, in general, like, in your life with diabetes, like are you aware that you're doing well for yourself?

Sophia 55:36
I'm, I'm really hoping that I will prevent any complications, because I already have to wear glasses since birth. So I do not want any other problems.

Scott Benner 55:50
Like I don't need another thing to wear. So in your mind, controlling your blood sugar's keeping them stable, keeping them within a reasonable range. That's about longevity. For you. That's about living well.

Sophia 56:07
Well, yes. Because the only thing I knew about diabetics was type two diabetics had their toes cut off.

Unknown Speaker 56:15
Did you know is the first

Sophia 56:16
thing I thought of when they said diabetes? Really? Yeah. And so I, that was kind of that's still in the back of my mind somewhere, even though I know it's irrational. I still think about that. And I think that fuels my anger,

Scott Benner 56:35
holding on to your toes keeps you motivated. Yes, it's a pretty good motivation. I have to be honest, if somebody told me right, now they were gonna cut off my toes. If I didn't vacuum the carpet, I'd get that carpet really clean. So I don't know if there's a real correlation. But it's interesting, because you were younger. And that's that was your scope of understanding for diabetes, like you had heard somewhere that people with diabetes can lose their toes. And that's how it struck you when somebody told you I type one diabetes? Yeah, yeah, that makes sense to me. Okay, so you somehow like, I don't know how to say this. I want to try to be delicate, but financially, your family's okay. Right? Like, this isn't cheap to get these devices for you.

Sophia 57:19
It's not in there was a factor to consider. But we thought that it would be way better for my health. Because whilst I couldn't correct ties, because my insulin correction ratio is not that big for me to Bolus a unit at 180. So I and I did have the pen that was half a unit. But it just, it barely worked. For some reason. I think I got a broken one. So we just considered it and we thought that, well, this is we're saving money on further complications and treatments. It's kind of pays off.

Scott Benner 58:03
That's it, and your parents are able to do it. So is it a Is it a bit of a struggle for them financially? Or is it just like art? Is the house made of gold? And it's not a big deal?

Sophia 58:13
I it's probably a struggle. I it's one of the factors that I hadn't really thought about that much. I probably should have

Scott Benner 58:24
no, I don't want you to please let me I want you to understand why I asked. I didn't ask because of you. I asked for the podcast I wanted. I don't want it. I don't want people I want people to understand, because not everybody can afford this stuff. Like Is this something that your mom and dad said to themselves? Alright, this is going to be a bit of a burden for us, but there's a lot of value in it. So we're going to cut back in other places.

Sophia 58:49
I think that's kind of more in the direction leading into the direction that happened because it was my insulin correction ratio. I know I'm probably not supposed to say numbers, because it's different for everybody.

Scott Benner 59:05
You just say numbers

Sophia 59:08
is surround one unit to 100 for you.

Scott Benner 59:12
Yeah. Okay. And so you were trying to correct numbers that the pen wasn't allowing you to do properly. And your parents decided, you know, your long term health is, is a priority, and so they're going to eliminate so your brother's not wearing shoes right now. And you evidence on that, right?

Sophia 59:32
Yeah, we just go barefoot in the snow, but worth it. Well, I

Scott Benner 59:36
mean, honestly, you can't go outside anyway, so who cares?

Sophia 59:40
I'm homeschooled. So that helps.

Scott Benner 59:42
Are you homeschool? Because that's what you are because of COVID.

Sophia 59:46
Um, I think that's what I prefer. Okay. Yeah,

Scott Benner 59:51
can I ask it has COVID been a big deal in Russia? How are you guys? Yeah,

Sophia 59:55
actually, yeah. Everything close down, and well, we had to announce us going to the store.

Scott Benner 1:00:06
You have to tell somebody you're leaving the house to go somewhere.

Sophia 1:00:09
Yeah, and I only one person I thought who was allowed some. But it kind of cooled down. And I think there's no system everybody wears masks, holds in there coughs and everything's okay.

Scott Benner 1:00:25
You know if you cough or sneeze in public now people look at you like you set fire to a school bus. They look at you

Sophia 1:00:34
when I was outside once, and I forgot my mask. So I stood very far away from everybody at the ENTER, like, had the front of the store while my mom was checking out, and an old lady came and she yelled at me for not having a mask. And she brought the people who work there. And she made such a big deal. But I was standing in the corner near the exit. Not near everybody. That's that was very mad.

Scott Benner 1:01:08
Were you was it upsetting?

Sophia 1:01:11
Well, it was kind of scary. Because I'm a real biter. I don't like to do anything wrong. I that type of person. So I think it was a bit uncomfortable.

Scott Benner 1:01:25
Yeah. You can't use like, you might be a tough kid.

Unknown Speaker 1:01:30
Well,

Scott Benner 1:01:31
I mean, in your, at least in your mind. Do you agree? Like are you mentally tough?

Sophia 1:01:38
Um, I think I told myself I had to be when I just was just diagnosed.

Scott Benner 1:01:43
Okay. Do you miss it? Can I ask you a question? I don't want to make you sad. But do you miss not having diabetes,

Sophia 1:01:50
I think I would have been much healthier if I hadn't. Because now, I kind of, since I'm homeschooled, I don't have a reason to go outside. So I push exercising to the back of my to do list. And I probably would have considered exercising more often, if I didn't have type one. But I tried to put it into the regular routine now.

Scott Benner 1:02:18
Because why? Because your blood sugar goes up when you exercise.

Sophia 1:02:22
No, it goes down goes down. And if I do anything, if I if I eat 15 carbs, it goes down Still, if I 20 carbs, it goes up. If I turn down basil beforehand, it goes down and then it goes to 300. And that was very, very hard to get a routine down. So I just said, Well, this isn't the most important thing right now. So I think I was just not

Scott Benner 1:02:48
gonna try to figure it, you should be able to figure it out, though. So if you're Temp Basal linkback working out getting low and then getting high later. Then your Temp Basal is happening too late, prior to the exercise

Sophia 1:03:07
thought so I started doing it a half hour earlier, only a half hour. But then I started going up very quickly. So me during the exercise,

Scott Benner 1:03:19
so maybe, so let's just make up numbers for a second. Okay. Let's pretend that you were doing a Temp Basal decrease an hour before you worked out. And you were then getting low and then getting high. I would try doing it two hours before you work out, but only for an hour. So four o'clock Temp Basal to five o'clock. And then work out at six o'clock. So that does that make sense? So that

Sophia 1:03:52
Yeah, I didn't think about that. I didn't know makes a lot of sense.

Scott Benner 1:03:57
So have you ever heard me talk about creating like a like a black hole with basil?

Unknown Speaker 1:04:03
Yeah, I think I

Scott Benner 1:04:07
didn't, it's hard to it's a weird, it's a weird concept because it's there's a little bit of time traveling and it feels like but but if you take away your basil from four to five, that won't really go into effect until maybe six. Yeah. And so if you take it away from four to five and then work out, then the workout overwhelms the still active basil and you get low. And then just as you get low, you hit that black hole of basil and the workout and then your blood sugar jumps up. So if you just shift the basil back farther, then you can put the workout in the black hole so that as the workouts trying to drive your blood sugar down, there's no insulin there to help it. It should stay stable. And by the time you get to the impact part where blood sugar goes back up again, the Basal should have been back on and re engaged. Does that make sense? Because that's pretty cool.

Sophia 1:05:06
I will try that you do

Scott Benner 1:05:09
that and make that work. I'm going to make you a T shirt that says best listener insanity. That's all I'm saying. Okay, although I probably cost $9,000 to ship something to Russia, so don't hold me to this.

Unknown Speaker 1:05:22
Okay, okay.

Scott Benner 1:05:23
Plus, how would you even get to you think on, like the back of us, like a sled dog or something like that? or

Sophia 1:05:29
What does everybody think we lived in some kind of under some kind of rock?

Scott Benner 1:05:38
You have everything. You got a PlayStation? I don't like video games. You could have one if you wanted one.

Sophia 1:05:46
I mean, they are available here, I think. Right? Because I'm not into that

Scott Benner 1:05:52
yet into it. I understand. Okay. So you would say that besides a bunch of snow, there's no difference between living in Russia and living in New Jersey?

Sophia 1:06:02
Um, well, in New Jersey, I guess you can go straight to the hospital when Russia you would know which hospital to go to. So you need to call beforehand since? No, nobody just goes to the hospital. There's it's not a custom here. every hospital is designed for a different thing. Like one hospital is only for endocrinal logical issues. The other one is only for surgery surgery.

Scott Benner 1:06:29
I got you. So I got a call ahead and say hey, here's what's going on with me. I think this is where I need to go. Is that right? And then they'll tell me if I can go there or not.

Sophia 1:06:36
No, you just need to wait for the ambulance and we'll take you there. Oh,

Scott Benner 1:06:41
you get a ride. Yeah, that's not bad. Just to pay for the ride.

Sophia 1:06:45
No, there's free health care.

Scott Benner 1:06:48
Wait, stop for a second. It's all free. Like you went to the hospital. You don't have to pay anything.

Sophia 1:06:52
No. And they give insulin for free. And you have pens and they gave me a meter and they give me test strips and lancets and everything but they don't

Scott Benner 1:07:02
do tax coms are on the pods, but that's only because they don't. They're not for sale there. So you could have gotten a Medtronic pump, but there's a waiting list for that. Yeah, gotcha. And Medtronic saints like old junky pumps to Russia. They By the way, Medtronic send more pumps. What are you doing? Right?

Sophia 1:07:20
Oh, they have the 670 but if you want a free pump, they're not going to give me the 670

Scott Benner 1:07:27
Thank you so cheap my Gianna, come on. Right. Don't you want to help Sophia? Sophie, you don't want that Medtronic though you like?

Sophia 1:07:34
I like the Omnipod Yeah,

Scott Benner 1:07:36
I gotcha. So you went on the pod to sell on the pods in Russia is what you want.

Sophia 1:07:40
That would be way more convenient. Yeah. Do you

Scott Benner 1:07:42
want me to send this to somebody in on the pod? I can do that.

Unknown Speaker 1:07:46
Um, you want

Scott Benner 1:07:47
to tell them? Oh, have important this is too. Sure. Go at Dalam

Sophia 1:07:56
please, children are dying.

Unknown Speaker 1:08:00
Yeah, but Sophia. You made me chuckle I was like are you usually this sarcastic? Are you just doing this for me?

Sophia 1:08:08
I think that's just my personality.

Scott Benner 1:08:11
You really could be my Russian child. Do you think your parents would mind if I adopted you?

Sophia 1:08:19
I think they'd be grateful.

Scott Benner 1:08:24
Oh, Sofia, I am so happy that you reached seriously. This is lovely. Okay, um, is there anything about your story that we haven't gone over yet? I imagine there is.

Unknown Speaker 1:08:36
Um, I skydive.

Scott Benner 1:08:39
You skydive recently.

Sophia 1:08:41
I yeah. I think it was last last summer.

Scott Benner 1:08:47
I'm sorry. I I'm you made me laugh so hard. I snorted ice up in my nose. And now it's

Sophia 1:08:54
a couple things actually. I'm good to bring dairy free. I guess I sky down and I had a couple of bad lows

Unknown Speaker 1:09:08
during skydiving?

Sophia 1:09:10
No. Okay. Yes, yes.

Scott Benner 1:09:14
Right. Let's pick through it for a second. Why do you eat gluten free if you're not celiac, but you just don't want the gluten.

Sophia 1:09:19
Um, I had really bad stomach issues for such a long time. They thought I had appendicitis once but I didn't. And my mom thought okay, let's try eating gluten free and since then I don't have any stomach issues

Scott Benner 1:09:37
they ever give you a celiac test.

Sophia 1:09:39
No I mean yes, they gave gave me the test but I didn't don't have celiac. So it's weird. I mean, it was on the higher end but it wasn't like anything that they said he definitely have it.

Scott Benner 1:09:52
So they call it like a like a gluten intolerance or something like that. Yeah,

Sophia 1:09:56
yeah. Also dairy free because I could never stomach dairy since my childhood, I was always very nauseous.

Scott Benner 1:10:05
Do you mean you fart?

Sophia 1:10:07
No, it just made my stomach hurt and very nauseous.

Scott Benner 1:10:10
Made you wish you could fart? I understand. So Alright, so we don't do gluten and we don't do dairy, Ali pod index calm and a couple of bad lows. So you have bad lows back on MDI or recently. How did that happen?

Sophia 1:10:25
Um, yeah, I never passed out before. But I boast for my morning oatmeal, and I started cooking it. And I forgot that I bolused and 40 minutes passed, and I see 72 hours down. I remember I boast I tried to eat the oatmeal, but I can't because I'm very nauseous. At the end my own just out at around 40 I couldn't because I couldn't eat a drink. So many units worth of juice. So we just gave me a bit of glucagon. And I laid in bed the rest of the day.

Scott Benner 1:11:08
Got the day off, huh? Yeah, the problem in that situation is the oatmeal just doesn't hit you like besides you being nauseous, because you're low the oatmeal is just not going to work fast enough at that point. You just you Pre-Bolus too long, which you know, but Tim, what are you doing that you got? You remember what got you sidetracked?

Sophia 1:11:28
I was listening to your podcast while making

Scott Benner 1:11:31
made you high today and low that day.

Sophia 1:11:35
I wouldn't blame it directly on you.

Scott Benner 1:11:37
Thank you. That's important not to blame it on me.

Sophia 1:11:40
Of course, because nothing here in the Juicebox Podcast is considered medical advice or otherwise,

Scott Benner 1:11:46
Sophia, you know, you're coming back on the show, like a year from now, right? Like I love.

Sophia 1:11:50
So I'm having a lot of fun. Oh,

Scott Benner 1:11:52
my God, I'm having a lot of fun. I don't even care if people like this or not. This is fantastic. This is the best episode we've ever made. You are just you're lovely. You really are. I am having such a good time talking to you. I really appreciate that you came on and told me all of this and told everyone all this. Because it's very hopeful to me that someone your age could be diagnosed, absorb the gravity of diabetes, find out what to do, even when they get kind of bad information, figure it out on their own, put it into practice and do such a good job of taking care of themselves in such a short period of time is really inspirational. And I don't I mean, you listen to the show. I don't use that word very often. So what you've done here is really amazing. I'm really excited for you. And I can't wait to see you figure it out when you like are you getting your period yet?

Sophia 1:12:55
Oh, yeah. A year already?

Scott Benner 1:12:58
Is it a pain with your blood sugar's Have you figured that out to

Unknown Speaker 1:13:01
such?

Unknown Speaker 1:13:04
But you've got

Sophia 1:13:05
no pattern at all? None. None? Well, not that I can see. Some weeks I'm just constantly how you week before and during then other times I'm normal, then I'm very low for some reason. And it's there's no pattern at all.

Scott Benner 1:13:23
But you're still keeping your Awan see where you are. So the will say you figured out the up your basil. And now you've got things back together again. So now you got to figure out how to be flexible. When these changes happen. Like you can't, I know it's hard for people to understand. But when you're managing a girl who's getting hit with hormones like this, you have to be able to on a day to day basis, look and say today is more basil. Doesn't matter why it just is this is the graph is telling me more basil here today or the graph is telling me to be more aggressive with meals. And you have to just do it. And as quickly as you turn it on. You have to be ready to a day later turn it off again, and just go Okay, let's go back to where we were or go halfway back. It's um, it takes a little while to get used to.

Unknown Speaker 1:14:16
Yeah, wow.

Scott Benner 1:14:17
I bet you didn't think we talked about your period, right?

Sophia 1:14:20
I mean, I listened to one episode with I think some other girl and I I was expecting it. Okay, boy. Yeah.

Scott Benner 1:14:33
Can I ask a weird question when the girl was on from Czech Republic? Did you think like that's close to me.

Sophia 1:14:40
Um, she made it sound. So not like life here.

Scott Benner 1:14:46
Oh, it's different than you've been. you experience it?

Sophia 1:14:48
Yeah, it's I don't see anything really weird about I mean, maybe I'm just brainwashed. But

Unknown Speaker 1:14:57
I don't think you're brainwashed

Sophia 1:14:58
that we have Everything here I think,

Scott Benner 1:15:02
like I've got a light in my room and everything.

Sophia 1:15:06
Yeah, I have a chair and the desk.

Scott Benner 1:15:09
kit you fancy with your chair? Do you have any? You have a killer cat? That's nice.

Unknown Speaker 1:15:17
I have two killer cat. But

Scott Benner 1:15:18
it's not a Siberian tiger. It's just a regular house cat, right?

Sophia 1:15:21
Oh, no. She's a Panther. Oh,

Scott Benner 1:15:25
I didn't recognize them. Well, you, you know, I'm just trying to figure things out. I don't leave this country. So I don't know anything in my mind. You know, Canadians ride moose, and you're just

Sophia 1:15:37
drink vodka since

Scott Benner 1:15:38
I just, I just assume you're training to be like an assassin. That's all?

Sophia 1:15:43
Well, I didn't say I wasn't training to be an assassin.

Scott Benner 1:15:46
Well, that would be a weird thing to say. All right, well, so then, should we just call your episode Black Widow? Or what do you think we should do?

Sophia 1:15:58
Um, mafia leader sounds more. You just,

Scott Benner 1:16:04
you don't want me to draw attention to you like, because there is a Russian mob, right?

Sophia 1:16:11
I don't know. You're 14.

Scott Benner 1:16:14
And look at you. Even if you did know, you would say you didn't know.

Unknown Speaker 1:16:18
or would I? Wow.

Scott Benner 1:16:19
You're very cagey. Okay, Sophia. We're gonna stop here. Because I'm afraid that it's possible that a 49 year old guy and a 14 year old girl in Russia might become best friends if we talk much longer. So I'm going to and I don't know what we'd eventually would talk about. But I'm gonna say to you that I definitely want you to come back on sometime, like maybe a year or so from now. Like, I think I want to know what a 16 year old Sofia sounds like. So let's, let's, let's let's set up goals right now. Let's just let the advertisers know right now the show's got to go at least two or three more years. Because we got to figure out what happened

Sophia 1:16:55
in a couple of months, so maybe only a year. Ah, Sophia,

Scott Benner 1:16:59
please pay attention to what I'm doing here. Okay.

Sophia 1:17:02
Oh, yeah. The show has to go on for at least another 10 years. And I also want my future children to be on it.

Scott Benner 1:17:14
Don't want Have you tried to adopt Sophia. I have Dibs. If she ever needs adoption. Amazing. Absolutely amazing. I not kidding. I want to keep this podcast going forever, just so I can talk to that girl over and over again. I want to thank Sophia so much for coming on the show and being amazing. I want to thank the Dexcom g six continuous glucose monitor for being amazing. And for being available dexcom.com forward slash juice box. I'd also like to thank the most accurate blood glucose meter that I've ever touched with these hands, the Contour Next One blood glucose meter. Find out more at Contour Next one.com forward slash juicebox. It is an amazing website. There's a ton of information there, go check it out. There are links to the sponsors and all the sponsors in the show notes of your podcast player, or Juicebox podcast.com. We support the sponsors. You're supporting the show. Thank you very much. Continue to share the show with others. Download as many episodes as you can listen to them with your ears. And enjoy. I'll keep making them. Thank you so much for listening. I'll be back very soon with another episode of the Juicebox Podcast. Sophie, if you're still listening, I want to make sure you understand without sarcasm that I so totally enjoyed talking to you on the podcast. I think you're terrific. And I really would like to speak with you again someday. I'm wishing you a lot of luck from over here in America. You made my day.