Scott Benner 11/4/24 Scott Benner 11/4/24

#1349 Cross That Bridge

Becky is the mom of a 21 year old type 1 who also has high functioning autism.

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Scott Benner 0:00
We're back together, friends. This is the next episode of The juicebox podcast.

Becky is 53 she's the mother of a 21 year old, type one, who also has high functioning autism. Her daughter was diagnosed in 2023 the education they got at the hospital wasn't great, and the way they found the podcast is a story in and of itself. 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. Don't forget, if you're a US resident who has type one or is the caregiver of someone with type one, visit T 1d exchange.org/juice box right now and complete that survey. It will take you 10 minutes to complete the survey, and that effort alone will help to move type one diabetes research forward, it will cost you nothing to help to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code juicebox at checkout. That's juicebox at checkout to save 40 percent@cozyearth.com if you're looking for community around type one diabetes, check out the juicebox podcast, private, Facebook group juicebox podcast, type one diabetes.

This episode of The juicebox podcast is sponsored by the continuous glucose monitor that my daughter wears the Dexcom g7 dexcom.com/juicebox gets started today using this link. The episode you're about to listen to was sponsored by touched by type one. Go check them out right now on Facebook, Instagram, and of course, at touched by type one.org check out that Programs tab when you get to the website to see all the great things that they're doing for people living with type one diabetes, touched by type one.org

Becky 2:05
Hi. My name's Becky, and I have a 21 year old daughter named Kara, who was diagnosed July 5 of 2023

Scott Benner 2:14
July 5 2023 Oh, my goodness, just about a year ago. Yeah, almost a year okay, and she's 21 now she's 21 now she was 20 at the time. So I'm not going to stretch this part out too long. You don't usually get a mom on to talk about their adult child, but there's a reason for this, right?

Becky 2:32
Yes. Okay, so my daughter is on the autism spectrum. She's high functioning, yeah, when you say adult, she's definitely adult by age, but not quite there where she can really be by herself at this point. Still needs a lot of guidance,

Scott Benner 2:47
okay? And what made you want to come on the podcast? I just kind

Becky 2:51
of wanted to talk a little bit about, you know, when you're diagnosed as an adult, even if you don't have, you know, any kind of other issue or disability. It's not really always, you know, they treat you like an adult at 18, but at 18 or 20, or however old you are, you still need to learn about this disease. I mean, it's or this diabetes. It's very confusing. And I think if you are not mentally or mature enough, I think that you need a lot of support, and you don't get that in the hospital. And we found that out being diagnosed as an adult, even with her being on the spectrum, it was, it was a nightmare, really.

Scott Benner 3:34
I think that one of the reasons that people like the podcast or the way I talk about diabetes is because the way I talk about it is set up so that Arden can understand it without understanding it correct. Because she's like, she's 20, and Arden's a bright, thoughtful person, etc. But if you really pin her down about diabetes, she's like, I don't know, like, you know, and she manages a low six, A, 1c, at college by herself. That's amazing, yeah, and it's all just because I don't know, I've t shirt slogan her life, the way I've done the podcast. I'm like, you know, like, you know, pre bolus, and don't get high, you know. Like, well, how do I not get high? I'm like, just don't get high. Like, bolus, see, you don't get high. And if you get high, bring it back down real quick, and, and, but don't get too low. So you have to stop it before it gets back down. Like it's not there's nothing technical about it. I think that works really well for her. And then somehow it translates well out to people that I I'm speaking to that can't hear me, but I take your point, like they just sort of blurt the stuff out to you, and then that's it. They're like, Well, we said it now, so go ahead, right?

Becky 4:41
Yeah. And if you're like my daughter, you know, she's very black and white. She doesn't read between the lines on anything. And you know, she takes everything. What you said is what is to be done, right? I mean, I guess in one on one hand, that's a good thing, because she likes she's a rule follower. So, you know, she will follow. The rules, but yeah, she needs to know step by step. It's not like, Oh, do this or here, don't do that. It's, she's more rigid, I guess she should say,

Scott Benner 5:09
So, once you've got it set up, she's okay, yeah,

Becky 5:13
once you've got it set up, she's okay. Like, she's doing really well. Now she she counts her carbs and she well, okay, for first, let me just say we're on the Dexcom seven, so we've been manual and the OmniPod five. So we've been manual since she got a pump, because they don't talk to each other yet, right? So we've learned how to do everything manually, and that's how she knows how to do it right now, until, until the two of them are, you know, interfaced together, I guess. So she's good about, you know, counting carbs, putting it in the PDM is still getting the point where, if she starts heading up, you know, we still have to step in and go, Hey, you know you're getting up, you probably should give yourself some more insulin, catch it before it gets too high. And she's getting better about that, I think a little bit in her mind. She says, Okay, I gave my insulin for this amount of carbs, this is what I gave. I'm good. She expects it to work, right? Yeah, she she did the work. She did what she was supposed to do. So it's all of that, you know, hey, it's heading up, and she is getting better about that now, like, I give her props. Like, pretty much during the day, we don't really bother her. You know, she handles it all during the day pretty good, unless she stayed high for a while, then we might say, hey, you've been high for a while, like, you probably need to, you know, give yourself some insulin, and she'll be she'll usually say, Hey, I've already done it. It's just not coming down. I'm not sure why. So, yeah, for for us to be just a year in and her to be on the spectrum. She's doing amazing. I think,

Scott Benner 6:42
yeah, no, she it sounds, it sounds like, it like, so what happened in the very beginning that made you feel like, oh gosh, here, here are the problems. What was happening that made you go, there's insufficiencies in what we're doing. The Dexcom g7 is sponsoring this episode of The juicebox podcast, and it features a lightning fast 30 minute warm up time that's right from the time you put on the Dexcom g7 till the time you're getting readings. 30 minutes. That's pretty great. It also has a 12 hour grace period so you can swap your sensor when it's convenient for you. All that on top of it being small, accurate, incredibly wearable and light. These things, in my opinion, make the Dexcom g7 a no brainer. The Dexcom g7 comes with way more than just this, up to 10 people can follow you. You can use it with type one, type two, or gestational diabetes. It's covered by all sorts of insurances. And this might be the best part. It might be the best part, alerts and alarms that are customizable, so that you can be alerted at the levels that make sense to you. Dexcom.com/juicebox, links in the show notes, links at juicebox podcast.com, to Dexcom and all the sponsors. When you use my links, you're supporting the production of the podcast and helping to keep it free and plentiful. I was looking for a way that we could all get nice and tanned and meet each other and spend some time talking about diabetes. How are we going to do that on a juice cruise, juice cruise 2025 departs Galveston, Texas on Monday, June 23 2025 it's a five night trip through the Western Caribbean, visiting, of course, Galveston, Costa, Maya and cozmel. I'm going to be there. Erica is going to be there, and we're working on some other special guests. Now. Why do we need to be there? Because during the days at sea, we're going to be holding conferences, you can get involved in these talks around type one diabetes, and they're going to be Q and A's plenty of time for everyone to get to talk, ask their questions and get their questions answered. So if you're looking for a nice adult or family vacation, you want to meet your favorite podcast host, but you can't figure out where Jason Bateman lives, so you'll settle for me. If you want to talk about diabetes, or, you know what? Maybe you want to meet some people living with type one, or just get a tan with a bunch of cool people. You can do that on juice cruise 2025. Space is limited. Head now to juicebox podcast.com and click on that banner, you can find out all about the different cabins that are available to you. And register today. Links, the show notes, links at juicebox podcast.com, I hope to see you on board.

Becky 9:27
Well, I mean, I think it just started with the whole hospital setting, you know, we went, we went into the hospital. So I'll give you a little backstory. So she, she had been complaining of, you know, and I don't, I didn't know much about diabetes. I do have a girlfriend whose son was diagnosed when he was 12, and I just vaguely remember her saying that he was he drank a lot of water, and that he was fatigued a lot when they had found out. So that kind of somewhere in the back of my mind. But she had been complaining of stomach ache for like, three months. She complained that her stomach hurting, and she had ran in. Only thrown up a couple times, but she had just started working at my husband's company, and she was working in the warehouse, and it's hot, you know, it's, we live in Florida, so it's very hot. Yeah, she was drinking tons of water. She was coming home fatigued, she was losing weight, but to be honest, I was contributing all of that to her being in the warehouse, you know, because she went from this kind of sedentary, didn't do a lot, to being in this hot warehouse. So I was just kind of attributing it all to that. So finally, I took her to the pediatrician, and I was like, you know, she's playing on her stomach hurting. It's been going on for a while. I don't know what's going on. They were just kind of like, well, oh. And so backstory, my daughter is deathly afraid of needles, like we couldn't even prick her finger, like when she would go for the like, for her normal, you know, checkups, trying to give her a vaccine or any kind of shot. I mean, got, I mean, holding her down, screaming, craziness, right? It was just crazy. Okay, so when we went to the doctor, she didn't prick her finger or anything. She just said, Oh, she probably has acid reflux. And so she gave her a prescription for acid reflux medicine. And then she said, and I said, Well, anyway, we can get her blood work done. You know, she hasn't had it done since she was little, because she refuses to, you know, go around any needles, yeah, so she gave us blood work to get done. And I kept telling Kara, well, she we got the prescription filled. She took that a couple times. She said, That's not helping. That's making it worse. And I said, Well, you need to go get your blood work done. And she's like, No, I'm not doing it like she refused, refused to go get it done. So three months goes by. That was in April, in June, we went to we went on a cruise. While we were on the cruise, she was sleeping constantly. She was eating like crazy, drinking tons of water. We were with another couple family friend of ours, and I said to them, you know, if I didn't know any better, I would think she has diabetes. And we all went, oh god. Wouldn't that be awful, considering how much she hates needles, right? We were like, oh god. So we just kind of put that out of our mind and went on whatever that was. In June we got home, July 4, we had went to a cookout at some friend's house, and we came back home and she laid on on the couch. She's like my stomach hurts. Of course. She had macaroni and cheese and bread and all this stuff. So I said, Kara, I don't know what to tell you. You know, you won't go get your blood work done. I don't, I don't know what to tell you. You know, I was getting, actually getting a little frustrated with her. I'm kind of, I feel bad now, but I was, like, frustrated with her because, like, I can't help you if you don't want to do what the doctor says. So the next day, July 5, she was still complaining of her stomach hurting. So I said, Okay, I'm just taking her to the emergency room, because I know my kid. I knew that they were going to have to, if they, if they took her in, they were going to put an IV in. And I thought, we can get all the tests done after they get that IV did anything that might be going on, I won't have to, you know, keep taking her back and forth to get blood work done. And so I took her to the ER and told them what was going on. And they were like, she looks fine. And I'm like, Yeah, well, she's been complaining of stomach hurting. And I told the doctor. I said, if I didn't know any better, I would think she was diabetic. They just kind of gave me the stare, like, whatever they went to put an IV in. Of course, my daughter freaked out. Said 20. So acts like a toddler when it comes to, you know, any kind of needles. So we kept telling them, like, Hey, you probably need to give, like, give her a valium or something to calm her down. You need to, like, give her nummy medicine on her arm, like anything that you think might help, because she's going to give you trouble to get the IV in, right? And they finally did. They finally did. It took like, three nurses to hold her down to get it in. So finally get the IV in, and then the doctor comes back, like 45 minutes later, after making the blood work, and says, Oh yeah, she's diabetic. She's in DKA, and were sent her to the ICU. And I was like, what?

Scott Benner 13:43
So they took you seriously when you said that, yeah, they

Becky 13:47
took you seriously. But then, well, sort of, she kind of looked at me, like, okay, whatever. And then when she came back, then she was like, oh gosh, you know, you were right, and sent us to the ICU. So anyway, needless to say, while we were in the ICU, it was a nightmare, just because of, you know, all the shots, you know, them coming in and pricking her finger and every hour on the hour, and all the different IDs they had to put in. It was a nightmare. But I kept saying, hey, like, we don't know anything about diabetes. Like, is there, like, an endocrinologist that we can talk to? Is somebody going to come in and talk to us about this? You know, are we going to get any education? And they kept saying, yeah, yeah, somebody will come in, yeah, we'll send in a nutritionist. And finally, a couple days later, they sent in a nutritionist, and then she sat us down, and we were like, she told us, like, she can't have canned vegetables anymore. She can't have this. She can't have that. She was just going. They were candid.

Unknown Speaker 14:41
Yeah,

Unknown Speaker 14:42
actually, vegetables. Becky, can

Scott Benner 14:44
you give me a second here?

Unknown Speaker 14:45
Sure.

Scott Benner 14:45
I'm gonna ask a question. Don't be insulted. Okay, no, are you? Are you nervous

Speaker 1 14:51
a little bit? Do you have ADHD? I do not. Okay,

Scott Benner 14:56
I'm gonna tell you. Why

Unknown Speaker 14:59
am I speaking? Really fast.

Scott Benner 15:00
I don't know what the we're talking about. Gosh, that does not happen to me that often you're doing that thing that. Have you ever seen Donald Trump's speeches in writing? No, he starts and stops and starts and stops and starts and stops like, he'll go like, I don't know exactly what I'll say, but he'll be like, I'm here today to talk about this dog actually, you know my wife, she had a cat and like, and then you're like, we love pets. When I say we, I mean my husband, I'm like, and I'm like, What the was the first thing he was gonna say and then, but when you hear it, it sounds right, like, I know that's a weird thing. Like, when you I'm using is a bombastic example, but when you listen to him, you go, like, I know what he's saying. Like, like, I understand what he's trying to say. But if you look at it in writing, it's disheveled at best, and I feel like you're jumping around like that. I feel like we're on a roller coaster and watching Pulp Fiction at the same time. And Vincent Vega is alive. He's dead, he's alive, he's dead, he's alive, he's dead. I don't like if I asked you one question, yep, I asked you, what has happened that made you feel like what you were doing is insufficient? Do you think we've answered that question?

Becky 16:10
I guess not. What I mean, not so much, what I'm doing is insufficient. I think the education that we received, or the lack of education that we received when we were in the hospital because she was diagnosed as an adult, right? You know, I hear on your podcast a lot that people that you know, the kids that are diagnosed younger, they're at these children's hospitals, and, you know, they get all this education, or a lot more education. I

Scott Benner 16:34
see what you're saying. So, because she was an adult, yeah, because she was an adult, but she doesn't absorb things like an adult, correct? She got that crappy adult hospital education that we hear about so much they're talking to her, but the truth is, is you basically are the one that's gonna have to still understand it, and it's very incomplete, and then you go home. Okay, correct? I'm happy to go back to that. We are so far into what I think is her diagnosis story that I want to keep going with it anyway, but I want to get you

Becky 17:06
back. Sorry. Yeah, so I guess my guess, what I was trying to get to is, while we were in the hospital, we kept asking for education, and we and they knew that my daughter was on the spectrum, and we kept saying, you know, we need to know what to do when we get home, you know, and but they kept speaking to her, obviously, because she was 20, and even though we have her sign a paper saying that, you know, we have, you know, rights to help her medically,

Scott Benner 17:34
yeah, that's what I'm wondering. Like no one ever just was like, hey, like, pulled you aside and said, Look, are we talking to you? Are we talking to her? No, no.

Becky 17:42
And so we kept saying, my husband and I kept telling them, like, hey, like we don't know anything about diabetes. Like, we don't, you know. We know you guys are coming in, they're pricking her finger, they're, you know, coming in and giving her insulin shots. But nobody was really explaining, like, I had no idea that, you know, it was a carb count. I had no idea that, you know, even what a what the normal range of blood sugar was supposed to be. So when we were discharged from the hospital, the only person who had come in to talk to us was that nutritionist.

Scott Benner 18:15
No canned vegetables,

Becky 18:16
no canned vegetables. Like I was like, what, you know, I to be honest with you, I just kind of ignored what she said, because I was like, she's not being very helpful. I don't even know what she's talking about. You know? I said, well, is anybody else going to come in and show us how to administer this shot prick her finger? Nobody ever came in and showed us how to do any of it until an hour before we were being discharged, I said we're not leaving until somebody shows me how to do like I don't know what I'm doing. I mean, luckily I have a little bit of a medical background, so I did know how to draw up, you know, insulin into a syringe. You know, I didn't draw up insulin at work, but I would draw up saline and things like that. So I knew how to draw things

Scott Benner 18:59
up, but I didn't really know you never stuck in anybody's arm or anything.

Becky 19:03
I never, I never knew how you know. I didn't know how much to give her. I didn't know what the fingerprint numbers meant. We didn't know any of that. And so it was just really, I guess, just really frustrated that there's not some sort of, I don't know, just a better practice around you know, younger kids, even though they're considered adults, 18 to whatever that they I'm

Scott Benner 19:28
gonna break some news to you here. There's not so I found that out. I found that that does not exist for reasons that I've belabored over and over again. I just did a grand rounds episode yesterday. I recorded one with, like, this fantastic person and, and I was like, so how do we fix this? She's like, I don't know. And she was like, really dedicated. Had type one understood honestly, like I was talking to the right persons. Like, what's the fix for this? No one ever knows. Yeah, I think there's a number of. Reasons for it. I do sometimes try to look at it from their perspective. Like, what if I had this conversation with the nurse who helped you, would she be like, Oh my god, there was a 21 year old girl, oh my god. She had autism, and she was like, screaming. We tried to take her blood and everything, and I didn't know what to tell her. Like, do you ever think it would be like, You know what I mean? Like, from that perspective, like, what do you do? Like, what do you do when someone comes in with a 14, A, 1c, and you're like, Listen, are you bolusing for meals? And they're like, Nah, not usually. Like, where do you start? You know what I mean. So I try to put myself in their perspective, but at the same time, they're not always talking to people who aren't going to listen. I think what ends up going wrong is that there's no there's no checklist for them to go through. It's almost like you get the information as they think, to have it fall out of their head while they're working. Does that make sense? Yeah,

Becky 20:52
that makes sense. Yeah, I did get a hold of, you know, I did do like, a big complaint the hospital, just because I I actually worked for that hospital for 15 years, so I knew a lot of, I knew a lot of you know. So I was very frustrated, very frustrated. And so, you know, I did end up going up the ladder a little bit. And somebody actually did come to my house and brought a diabetes book that they were supposed to give us in hospital that talked about diabetes. It talked about all kinds of different, you know, different food options, different different things. And she, she came to my house personally, and she was like, I'm very sorry about, you know, your experience at the hospital, you know, this book they should have given to you while you were there. She said, I went in, I talked, you know, we obviously dropped protocol. I mean, nobody even knew where these books were. She said, when they went into, when she went in to talk to them, nobody even knew about these books. Nobody knew where they were. I mean, not that the book is going to tell me everything, everything, but at least I would have felt like, okay, they're trying to educate me a little bit, you know, here's this, this book that's going to help Right, right? And she said, You know, I she, I just told her. I said, Look, I just, I don't, I don't want this to happen to anybody else. I want, you know, there to be, be a better way to go about this. I said, because our experience here was terrible between, you know, and we kept telling, you know, our child's on the spectrum. She needs different. You know, the normal way of doing things isn't going to work for her. You know, you need to listen to what we're trying to tell you, because we can make it easier for you. You know, if you just listen to us,

Scott Benner 22:28
yeah, we understand the bigger picture here that you don't get right, right?

Becky 22:31
So I do have to say that they, they did, at least, you know, they did, at least, personally contact us the hospital and try to, you know, you know, told us that because of our our experience there, they were working on, you know, a better protocol, how to a better way to do things, yeah, sure. I

Scott Benner 22:52
hear there's not gonna be war in the Middle East soon too. They're getting it all worked out. Don't worry, right? It's all happening. It's yeah, it made me feel

Becky 23:01
better. I know that. You know reality, it was. They were just trying to appease me, but it did make me feel better. I said, you know, I just don't want anybody else that comes in there to have to go through we because when we got discharged, they gave us, and I don't know how it works for Children's Hospital, Children's Hospital, but we left with no nothing. We just left with prescriptions to go get insulin, prescriptions to go get a meter, prescriptions for, you know, test strips, that kind of stuff. And before we left, I told my husband, I said, you know, before we leave, let me just call and make sure the pharmacy even has. I had to call four different pharmacies before I even found the insulin in stock. So they were going to send us home with no insulin, and I couldn't even find it at first. You know what I mean? I was like, I don't know. I just felt like just everything was so crazy and so confusing. So we had said, is there an endocrinologist that we can see? And they're like, No, there's no endocrinologist on site. I go, you're telling me there's no endocrinologist throughout your whole system that can come and talk to us. No, they don't do they don't do that. You have to make an appointment one night, when my husband was leaving and I was staying with Kara, he came, came upon an endocrinologist that was in the same building that we were in. And so he walked over there and he told him, you know the situation, what was going on? And they were, they were kind enough to give us because we said they were able to make us an appointment for a few days after we got out of the hospital, but they were kind enough to give my husband the blood work that they would actually have us draw so they were able to do it in the hospital, so we wouldn't have to go take her again for another blood Draw after we got out of the hospital to answer, you know, whatever the endocrinologist wanted to look at. So we did bring that back to the the doctor, and, you know, they were at least willing to do that while we were in the hospital. So that saved us a, you know, a blood draw you've had

Scott Benner 24:55
this experience, okay? And it's, it's impacted you, obviously, yeah. And you've had time to think about it, and now you know more about diabetes, so I'm going to turn it around on you and say, What could they have done that would have made this better for you? Well,

Becky 25:10
I think just a little bit more education in general. Tell us why. You know, they just said keeper between this number and this number, but they didn't really give us the reasons why? Why do we need to keep her between this number and this number? You know, you know, if she goes below this number, this is going to happen, or if she goes over this number, you know, you're looking at, you know, long term effects. You know, if you stay high for too long, or, I don't know, I just think a little bit more of the reasoning behind why they were doing what they were doing. And why does she get this much insulin for this much you know, I don't know. Just

Scott Benner 25:46
Can I play devil's advocate for a second? I know you will in that moment, if they would have dumped all that on you. Do you think you're on here a year from now going? They really panicked me. They told me that if her blood sugar got too low, she could have a seizure and die, and if her blood sugar got too high, she could have things like neuropathy and maybe lose her feet one day. Like, if they would have hit you with all that, don't you think you would have been like, why'd you tell me all that I was day one. I just was figuring this out. Like, my question is, is it possible that there's no way to make it good on that day? And maybe,

Becky 26:16
maybe you're right, but I feel like, because I have a little bit of a medical background. I think more that way. I think in those terms, more, you know. So I think I would have been okay with it. Maybe my husband wouldn't have been okay with it at the time. I don't know, but I like to rather know the fact, you know what I mean, like, this is why, this is what we're doing, that this is why this happens. You know, at least I'd like to think that maybe you're right, maybe, maybe I would have felt way overwhelmed if they had to throw all that you know more on me, but I don't think so. Knowing my personality, I think I would have felt better knowing the reasons why

Scott Benner 26:49
you would have been okay. Yeah, can you imagine there are people who wouldn't have been Yes, how do they know who's

Becky 26:56
I guess they don't know that. I guess you're right. They don't know that. That's

Scott Benner 26:59
the part that I think we we miss all the time. I'm guilty of it as well, because in my hindsight, I'm like, Oh, my God, you should have just told me this. You should have told me that. You should have told me this. But those are things that I even know, that I should know now because of what I went through. And I think given the totality of the situation, meaning that often those nurses are new, right? There's not a lot of like, 10 year ER nurses, right? That's a pretty, like, high impact burnout job, right? So people go in, they do it for a while, and then they're out of it. Go meet an ER nurse that's had a job for five years, and they're going to be talking about, like, I'd like to get a nice job at a pharma company, pretty much what you'll hear them say, right? I want to move some paperwork around for the FDA. Like, that's, you know, that kind of thing. So you have newer people. They don't have diabetes. Their training doesn't teach them anything about diabetes. The stuff they're telling you, if you really think about it, is just the stuff they know. Like, I know. You want to keep it between these numbers. You're like, tell me why. They don't know why, right?

Becky 27:59
Yeah, no, well, I'm learning that now. Yeah, I didn't know that then, you know, I didn't, I didn't realize that they weren't, you know, educated enough to know the whys right, you know, I just assumed they did, and we just weren't being told. I mean, I know that now, mainly just from listening to your podcast. I mean, really, we've learned everything that we know from your podcast. Well, that's very luckily enough, we found it very quickly. And that was a weird little story. The day we got home from the hospital, my husband and I were like, Okay, we just need to get out of the house for a minute. We just need a break. And so we were going around our neighborhood.

Scott Benner 28:37
Wait, hold on, how many kids do you have? Three? Three,

Becky 28:40
but she, she's our youngest. She's

Scott Benner 28:42
youngest, okay, youngest, and you've been raising her for 20 some years. Is there any chance that, like you're she's never going to not need you? No, I think at

Becky 28:53
some point she'll be able to, she'll be on her own. I mean, she works and drives and all that. So it's just maturity level, you know, she's got to get to a higher maturity level. Me too. Becca,

Scott Benner 29:03
I'm still waiting for it to happen, but, but, I mean, when you guys are like, let's get out of the house, were you like, was there? Do you ever have been

Becky 29:12
in the hospital? Yeah, been sitting in the hospital and then with, you know, it was just so crazy the whole time we were in there because of just her freaking out over everything. And we were like, Okay, we just need quiet. Like, just peace and quiet for a minute. We're gonna just go outside. And we were going around our neighborhood, and this lady was outside in her car, hood was up, and my husband's like, oh, you need help. And she's like, Oh, my battery went dead. And so my husband went and got his truck, he was gonna jump start her. And he ended I stayed home, and he ended up telling her, why, why? You know that our daughter had just got diagnosed, and their babysitter happened to be 19 and had had diabetes, and my husband said, Oh, do you think she would come over and talk to our daughter? And so the next day, the girl came over, and she's the one who told us. About your podcast. Oh, no kidding. So yeah, so we knew about your podcast within a couple days of being out of the hospital. That's crazy. So I started, you know, just binging, you know, your Pro Tip series, and just trying to listen to all of that. And that worked. And yeah, our first, it worked. Our first. I mean, we knew nothing about pre bolusing. And to listen to that, you know, we weren't told about pre bolusing. I wasn't told about, you know, not to let it get try not to let it get over too high. You know, the hospital was like 200 something in the two hundreds, keep it below that. And so after listening to your podcast, our first three month blood work draw her a 1c we had her a 1c to 5.1 Okay, wow, good for you, yeah. And so she's, she's had three a 1c blood draws since she's been diagnosed, and they've been 5.1 was the first one. 4.9 was the second one, and we're at 5.3 now,

Unknown Speaker 30:56
how are you doing that? So

Becky 30:57
listening to what you I mean, we're being bold with insulin.

Scott Benner 31:03
Can I get a Christmas card or something? I mean, I'm not giving you my address, but, like, you know what, I mean, scan it and put it online or something, that'd be nice. So listen, it's crazy, because I expect that, and yet, when you say it, I'm like, Oh, my God, it really worked. Yeah.

Becky 31:17
And we, you know, we were MDI at first, which, you know, was a nightmare because of her. You know, by the time she got home in the hospital, she was very angry. There were, there was, at one point we had to sit on her to give her a shot because she did not. She was like, I'd rather die. I don't want to do this. I just rather die. She really say that. She said that. She said I'd rather die than give myself than have to have shots. And we were like, well, Kara, you know, there's a pump. There's, you know, and she would not even think about the pump that point. She was too scared. She would not even think about it. So we were MDI for the first three months we were we finally were able to get her to get, get the Dexcom on after about a month, maybe, maybe three weeks, my husband had to put one on and wear it first to show her like it's not that bad. And finally, we were able to get her get that on her once we got that honor. Obviously that helped, because we could see where her numbers were without having to prick her finger all the time, because she would fight us on pricking her finger. So yeah, we could we just listen to your podcast and listen to the Pro Tip series, and I don't know I learned so I learned so much now she won't listen to him. I'm always like, here, Kara, will you here? Listen to this one. Sounds really good. This will tell you No, she won't listen to him, but I do, and so I'm trying to teach her, what

Scott Benner 32:36
else is she resistant about? And is it something that you're able to get past or does it pretty much stick,

Becky 32:42
really? She's resistant to too many other things. She just is just like I said, very black and white. So reasoning skills are very, you know, her reasoning skills are difficult because she, she doesn't like to reason. You know, if you, if you say the sky is blue and she thinks it's green, she's gonna say it's green. You know, she's just very black and white. She does pretty well with most things. It was really the needle thing. That's, I mean, when she was younger, there were more things she didn't like certain smells, she didn't like certain sounds, she didn't like, but she's kind of outgrown all of that and moved past all that. It just was the needle thing. Was a big, big, big, big. That was the biggest hurdle we needed to overcome as she's gotten older, because she wouldn't get any blood work done. She wouldn't get she didn't want to get vaccines. She didn't want to, you know, all of that was hard. That's working, okay? I mean, she's now. I mean, it's like I said, come such a long way. I mean, now she puts her own pot on, she puts her own Dexcom on. She will prick her finger if she needs to. Amazed, amazed at how far she's come from us, holding her down, you know, but I think she just had to realize that it wasn't going away. This is part of your life now. It's not going away, and there's nothing else. This is it, you know, there's no other options.

Scott Benner 34:06
I hear you. So can you talk about it from your perspective for a minute? Because when you said you went outside, I imagine you guys going outside and just like, banging your head against a tree for a couple of minutes. What is it like? Like, you know, what's the last 20 some years been like, yeah,

Becky 34:20
like, you know, we have three daughters. She's our youngest of three. And so I knew something was a little bit different when she was probably about three years old. My son's off, and I just used to think she had OCD because, like, if I, if I were to get her dressed, she would shut you she wouldn't let me get her dressed until the drawers were shut or, you know, just really little weird OCD type thing. So when we found out she had autism, you know, it didn't surprise me, like I knew something was a little bit off for me, because I was the one who dealt with all the school and I dealt with all the doctors and the hole in her down every time we had to do something, and I felt like, Oh my god. Why? Why is this diagnosis of diabetes happening to her? Like she's been through enough, and I don't think I can take anymore, right? Because all of her life, I've had to be an advocate for her, you know, advocate with the school, advocate for with the doctors, advocate with everything. So when this diagnosis came along, I just thought, Oh, my God, you know, like, what more? One, can this poor kid be dealt and two, I don't know how much more you know, because I knew the majority of it was going to fall on me. I mean, I'm I'm home now, I don't work anymore, and my husband, you know, works. And so I knew that I was going to be the one doing most of the research. Are you

Scott Benner 35:39
an older parent? How old are you? Yeah,

Becky 35:41
I'll be 53 next week. Okay, so not really an older parent. My first child is 28 so I started at 24 so we have a 28 year old, a 24 year old, and then she just turned 21 in April, you know, not, not an older parent, per se. But for her, she was, you know, something,

Scott Benner 35:59
3031, something, when you had her, yeah, okay, yeah.

Becky 36:02
Her whole wife growing up, I've just had to be an advocate for her, and I've had to deal with her, you know, little eccentricities, here and there, etc, yeah. I just when this diagnosis came, I was just thinking, Oh my gosh. Like, well, we were finally at a point where we, my husband and I could leave, we could go away for the weekend. We could do, you know, and she could be here home by herself, because our other two daughters are, they don't live at home anymore, and so we could go and leave her. And then when this came along, I thought to myself, Oh my gosh, you know, I'm

Scott Benner 36:33
never getting out of this house. We're

Becky 36:34
never getting, yeah, we're never gonna do anything because, you know. But again, it's been a year. She does great. She handles everything by herself during the day and just occasional prompting here and there, but it's the night time that we we have issues with. I think she shuts down at night. I think she deals with it all day long, and then when she goes to bed at night, I think she just kind of shuts down. She doesn't wake up to the alarm. She doesn't want to deal with it, right? And so we have a garage apartment. So she lives in the garage apartment, okay? And we specifically built that knowing that she would probably live with us for a while, but we wanted her to have her own, you know, kind of her own space, and feel a little bit independent before she actually ever does get out on her own, and so, you know, she doesn't wake up. One of us has to truck up outside, up the stage, you know, wake her up, or just grab the PDM and give her, you know, insulin, or wake her up, tell her to drink a juice or whatever, because she's 21 and she's on the spectrum, and mainly because of her age, she you know, we tell her don't eat till late at night, or don't eat something so fattening, because it's going to hit you in the middle of the night, you know. But she's 21 she wants to eat Chick fil A, she wants to eat Chipotle, you know. And that's where we're having most of our issues. Is the night time. This

Scott Benner 37:56
reminds me of that line in the first Jurassic Park film, when the guy running the park asks, uh, Sam Jackson, how it's going, and he says, we have all the problems of a theme park and a zoo. I don't know what that exact line is, but, uh, that's how I feel, like that's the situation you're in. You're like, we have, like, a set of problems from this perspective, and we have a set of problems from this perspective, and her bedroom isn't down the hall or upstairs, it's outside and then in another structure. Oh, and we can't go out. And how you and your husband, okay? Are you? Like, like, POWs, like, just like, keep your head down.

Becky 38:35
You know, we, we did really good for a while. We went through a little rough, a rough patch through through this year, I won't lie, and we're fine now. But, you know, it was, it was a lot. It was a lot thrown on us. And I felt like, you know, for a while I felt like I was the only one. He's always been very involved with our kids. He's always been a good dad. Like, I think, because he knows I'm home, I have more time to listen to the podcast and to, you know, research and do stuff. So, um, oh, wow, I felt like, oh, maybe I'm the only one that cares about whether or not she's high or low. But no, he's, he's really stepped up to the plate, and he he does as much as I do, I would say, with the getting up, even though he has to work, you know, we'll take turns. If one night, if she goes high, I'll get up or goes low, I'll get up the next night. He'll do it. So we work pretty good as a team.

Scott Benner 39:24
What conversations do you have with her that are productive? Like, have you found a way to talk to her about stuff that ends well, I just think

Becky 39:32
a lot of it is just, you know, constant reminder, you know, like, when I when she's high, and we'll say, Kara, you know, the reason why we're on you about getting your blood sugar down is this is going to affect you later in life. You know, this can affect your heart. It can affect your eyes. And she already has eye, you know, some eye problems. So I'm like, this could affect your eyes. Could affect your kidneys, you know, just trying to get her to realize the whys, because she, I think, does better when she knows the whys. Mm. Hmm, but it really is just repetitive, I think, with her, yeah, reminding her why, you know, why you have to do this. Do you ever

Scott Benner 40:09
get something to the point where you think, oh my, this is done. She gets it, and then you wake up a year, a month later, and it's back to the way it was? Or once she gets it, does she have?

Becky 40:20
I feel like, once she gets it, she's pretty good about it, like she, yeah, I feel like, once she gets it, she's got it. And, like I said, with the with the daytime, now she's pretty much got it, you know, she, she handles it during the day. I don't really have to, you know, say too much to her during the day. And if I do, usually she's already on top of it. It's just It hasn't kicked in yet, or insulin hasn't kicked in, or whatever. But for some reason, at night, she hasn't gotten How does she

Scott Benner 40:50
handle being low?

Becky 40:52
She handles it pretty good. I mean, she gets she gets shaky, her hands start shaking, and she doesn't really get too stressed out. In the beginning, I used to stress her out, because if she got to a certain number, I was freaking out, you know, I was like, Oh my God, you know, Here, drink this, do this, because I was so afraid she was going to have like, a seizure or something. Then I was overcorrecting, and then she would shoot high. And I was like, oh god. So I think, in the beginning, I think I stressed her out more than she needed to be stressed, yeah, but now, you know, we're pretty good. If she gets, you know, she gets below 70 or below 55 really is when we really start to get more, you know, worried about it. If she's like, at 70 or whatever, like, I drink a juice, she drinks a juice, it still might go low a little bit, but we know that juice is going to kick in and she'll be fine.

Scott Benner 41:41
Has she ever had a situation where she couldn't respond in that low No,

Becky 41:45
no, not yet. We've gotten down to about 43 is about the lowest we've gotten. Okay? We haven't, you know, we haven't had any issues. Knock on wood. So far.

Scott Benner 41:56
What happens to her when she's lower like, like, as far as personality or ability to break reason. What do you see happen?

Becky 42:04
I feel like it's more when she's high that she doesn't have she gets really a she gets mean, almost like, mean, you know, when she's high, I don't when she's low. I just noticed she gets fatigued a little bit easier. She kind of like gets where she wants to nap more after a low, she's She doesn't seem to get too, you know, strange or anything. But with a high, she gets real like, mean, almost like, and when you tell her, like, Hey, you're high, oh, I don't care, you know, whatever, she just, she gets just real ornery. Yeah, when she's high,

Scott Benner 42:35
I think that's pretty common. I was just, yeah, it's interesting. Does she work? I'm sorry, did you say she

Becky 42:41
does work? She does work after, after the the diagnosis, they took her out of the warehouse and they put her in a on a desk job, so she's she does data entry right now, you know, being out in the heat and all that, we just didn't want her after she first got diagnosed. We were like, Yeah, we don't want her in that environment, just because we didn't know at that point how to handle anything, you know, we we were still trying to figure everything out. And, um, so she just, she just fine. Just fine. Working.

Scott Benner 43:11
What about wearing devices? So does she have any, like, tactile issues with those things

Becky 43:17
in the beginning, like I said, she would not. I mean, it was, it was the nightmare, trying to get her to try the g7 trying to get it on her. It's just a for her, she is. So we have to use, like, in the beginning, we had to use numbing cream for everything we did. Like, if she, if we, you know, had to not pricking her finger. We finally got to a point where we could prick her finger without doing anything. But we had to get, you know, when we got onto the devices. We had to do numbing cream for everything, and then, so then you it would take, you know, an hour to do a change, because we would put the numbing cream on, and we'd have to wait 30 minutes for the numbing cream to even take effect. And that was all really, I think, just a mental thing for her. I think she thought if she had the NAMI cream, it would just not hurt as much. So in the beginning it was just a mental thing. Now she does it all without numbing cream, like we've graduated, you know, but, yeah, in the beginning it was like it was this, itches this, you know, our she still says it itches. So we'll use, like, the nasal spray that people say to use. We'll put that underneath her pod before we put it on, and that seems to work for her. And again, I don't know if it's just a mental thing for her, thinking that she has the nasal spray, it works and it doesn't, you know, doesn't itch, or if it's just kind of like the numbing cream was that made her feel better to know she had it on, yeah,

Scott Benner 44:35
who cares? As long as she's happy, who cares? Yeah,

Becky 44:37
that's what said. Who Cares she's and like I said, She's pod changing on herself. Now she puts the Dexcom on by herself. Now, you know, if she, if she's putting it somewhere, she could do it. She still can't put it on her arm by herself for whatever reason, but she'll put it on her leg or whatever else. So, yeah, like, I mean, I guess my point is, you know, we, we went from not knowing anything to finding your. Podcast now feeling like we're, we're still learning. We still, I mean, we did, we did we do see Jenny, which we found through you guys, oh, cool, or through you. So we've been working with Jenny for the past three months, just to kind of learn some of the things that we we just couldn't seem to get control of, like the fat, protein rises, and, you know, things like that. She's been a big help for any other moms out there that have kids that are on the spectrum. You know, the spectrum such a wide, you know, there's such a wide variety of of where kid falls on the spectrum. You know, we're blessed enough that she's high functioning. Now, I just feel for any other moms that are going through this, because if they have a child that's not as high functioning, I can't even imagine how they're dealing with it. What

Scott Benner 45:49
happens, you know? Yeah, yeah. I mean, have you even been able to wrap your head around like I asked you before? Do you think she'll be okay on her own one day? But do you think she'll be okay on her own one day with Aya babies?

Becky 45:59
Um, it's definitely thrown a brunch into the, you know, where I thought we were going to be. I do think she'll be able to be on her own someday and be able to control the diabetes. I mean, the first step is handling it during the day, and she's got that down, you know, she's, she's pretty good at that, if we can just get her through the night to realize that, you know, and it doesn't happen every night, you know. Luckily enough, we don't have to get up every night with her, but on the nights that we do, you know, if we can just get her to the point of of self care in the night, then I don't think she'll be too far off from living on her own, you know, with the room, maybe with a roommate or something. I mean, I think totally alone. But don't

Scott Benner 46:39
let this scare you. But last night, I got into bed and like, an hour and a half later, Arden's blood sugar was going up, and I'm like, what is happening? And she's home for for school right now. And I looked and I'm like, why? This doesn't make any sense. Like, the I can see the algorithm, like, pumping insulin. I'm like, what's happening? So I look a little deeper, and this pump is, like, been expired for four hours, and it's getting ready to shut off, like, four more hours from now, right? I go in a room and I wake her up. I'm like, Hey, and she goes, what? I'm like, you're at the bed with a pump that's almost dead. And she went, Oh,

Unknown Speaker 47:09
I said, so that's what you have to worry

Scott Benner 47:11
about, right? I mean, so good luck is what I'm saying.

Becky 47:16
I know, I know. I maybe it's wishful thinking on my part, but I do think someday, I do, I do hope someday she will be able to live on her own.

Scott Benner 47:26
Do you guys feel an immense amount of pressure about saving money, like, for after you're gone and stuff like that?

Becky 47:32
Oh yeah, oh yeah. Like, we've already, you know, we've already set up a whole thing of, like, in case she doesn't have insurance, you know, we need to have money set aside to cover all of her diabetes supplies. And, yeah, yeah, that's been a real concern. And, you know, she has two older sisters who, you know, to be honest with you, they don't really care to learn about they're not in the house. They're not around it, you know, so, and they shouldn't have to be the ones to take care of her. Something happens to us, right? I mean, so yeah, we do have, we do have a system set up in our will that sets aside money specifically for diabetes supplies and her future, you know, health, in case she's not working or doesn't have a job with insurance or whatever. But, yeah, that's scary, because, you know, you got to have enough to last something. We just

Scott Benner 48:23
started looking to the idea of setting up a medical trust. And I don't know how much money we'll be able to get into it, but at least maybe it would be something, you know, and that's, I mean, I find that frightening, and an Arden is not, you know, doesn't have autism. So exactly, what about other autoimmune in your family? Is there any I have?

Becky 48:44
Hashimotos dad had thyroid issues, and like, rheumatoid arthritis runs in my family a lot. I don't have it. And as far as I know, Kara doesn't have any other autoimmune so far, thank God, but yeah, and I'm the only one with autoimmune in our family. My other two girls don't have anything, and my husband doesn't have anything, so she's probably got it from me, I guess, interesting. Yeah,

Scott Benner 49:09
do you feel better?

Becky 49:10
I mean, I do feel better. I guess I do feel better a little bit. Hopefully, I didn't just rant

Scott Benner 49:15
No, no. I mean, I mean, no, no, you were fine. Don't worry. Trust me, you're fine. I stopped you before it got away from you. Don't worry about it. I let you go a little bit in the beginning, because I thought your stream of consciousness was the interesting. I just thought that if I didn't, like make you aware of it, that we'd still be in it, like a half an hour later. Yeah, and

Becky 49:33
you're probably right, yeah. I think that was nerves in the beginning, though, and

Scott Benner 49:37
it's unfair, because people are nervous and when they come on at first and stuff like that. I can also see where, if I'm in your situation, this would feel like calling a friend with coffee and being like, can I just tell you what's going on? And you don't realize that a half an hour later, your friend's like, just going, Uh huh, yeah, right,

Unknown Speaker 49:54
yeah. Like,

Scott Benner 49:55
oh God, but not even listening to you anymore, because you're like, you have to get it out. And they know. You need to get it out everything. But I wanted you to be able to get some out. But then I wanted to ask you some specific questions as well. And we're not done yet. I just wanted to make sure that you were okay. Yeah, okay, I'm good. Do you or your husband go to therapy? No. Do you think you should? Maybe

Becky 50:14
I do. I don't know if he needs to. You mean as a couple, or do you think as like individuals? I

Scott Benner 50:19
don't know. Becky this whole thing,

Becky 50:22
we're good couple wise, we're good individually. Maybe I could probably use it, even Kara could probably use it. But no, we haven't gone

Scott Benner 50:29
more so since the diabetes. Or equally, equally, I think equally, because as she gets older, am I right? It seems to me like you're in this weird paradox where you're having a an adult child relationship and an adult, adult relationship at the same time. And then how do you exactly right, right, right? And then, good, yeah,

Becky 50:51
I just gonna say it's, you know, it's she, she, you know, wants to be treated as an adult. She thinks she's an adult because of the number of her age, right? So she wants to be treated like an adult, but, you know, she's just, she's just not there yet. So there's still just so many, you know, so many things I still have to just kind of step in and help with. How

Scott Benner 51:11
will you know when she's there?

Becky 51:13
I don't know. To be honest with you, I don't know. Is there

Scott Benner 51:16
a fear that she'll get there and you won't know how to, like, let go?

Becky 51:21
Yes, yes, because I am kind of an A type personality. Get

Scott Benner 51:26
out of here, seriously.

Becky 51:29
So, yeah, that could be, that could happen, for sure. I mean, because she'll always say, I got it, I got it, you know, if I'm saying something, I got it like, but I, you know, I'm like, you know, little, you know, I'm gonna make sure she's got it, you know, instead of just letting her do

Scott Benner 51:46
it, it seems to me that the worst mistake you could make is pushing to the point where it ruins your communication relationship. Yes, like, we want to do that, yeah, where she just writes you off, and then legally, can go do whatever she wants.

Becky 52:00
That is a fear like I've talked to my husband about before. I'm like, you know, she doesn't, she hasn't quite realized yet that she could just go and say, Oh, after you I'm leaving. You know, I don't have to listen to this, or you can't tell me what to do. You know, she hasn't quite figured that out yet. So I'm lucky enough that she still, you know, still kind of listens, but yeah, there's a real scare that one day she might go, What

Scott Benner 52:26
about like, real adult things, like, like, drugs and alcohol? How do you manage that stuff? Okay,

Becky 52:32
so she's never, you know, drugs has never been an issue that I'm aware of with any of my girls. We went. Her birthday was April 21 and we went to Nashville for a birthday. She loves music. She wanted to go to Nashville. She wanted to drink. And we're like, oh, gosh, you know, how do we handle this now? Because we didn't really even know it was

Scott Benner 52:51
in her mind, alcohol, yeah, what would affect anything? Oh, I see, okay, yeah. Like, we didn't know we wanted

Becky 52:57
her to be able to have a drink. I mean, she's 21 we wanted to be able to be able to have a drink, but we also didn't know how it was going to affect your blood sugar. So I'm looking through your, you know, your podcast, trying to listen to, you know, alcohol related podcasts, so I knew what to look for. Luckily enough, she's not a spritzer kind of drinker, you know, you know, what are those? Seltzer? Seltzer? Yeah, the

Scott Benner 53:19
thing in the can they look horrible. Not

Becky 53:22
much in there. That's really all she drank while we were there. So that was easy enough to handle, like, and she hasn't really wanted to try anything else. So, so far, you know, we've been okay. But I did talk, I did have a talk with her about alcohol and how it, you know, can affect her sugar and how can make you low in the middle of the night. You know, later down the road in the night, if you're sleeping, it can make you sleeping, it can make you, you know, get low, right? So, you know, we've had to talk with her. She, she says, okay, you know, that's, that's all I know, you know. But

Scott Benner 53:51
she has money, right? Yeah, she has money. She drives, she has autonomy, and she's aware alcohol exists. Yes, this is an interesting question. I think, what are the largest gaps of time where you're unaware of her location?

Becky 54:05
Not too much. There's not to me, I usually know where she's at. Most

Scott Benner 54:08
of the time, okay, she doesn't, like, leave work and then show up two hours later and you're like, Hey, where were you? And she goes nowhere. Well, yeah, sometimes,

Becky 54:14
like, she'll leave and I'll be like, Where were you? I went to Target, you know? But I do, I do have a tracking app on my phone so I can look to see where she's at if I really wanted to. But usually she'll tell me, hey after work, I'm going to target or hey after work, I'm going she has a boyfriend. I'm going over to boyfriend tunnels. Oh,

Scott Benner 54:31
whatever. Oh, my God. And even think about that, there's a boy.

Becky 54:34
Yeah, there's a boy. So how'd you let

Scott Benner 54:36
that happen? Becky, geez,

Becky 54:39
I know, right? I have to say, though he's been great with the diabetes, like he has learned all about it, he makes sure when they go somewhere, she's got her bag packed with her low supplies. You know, he follows her on the on the follow app. He's in a little group text with us, and so if she's low, he'll text. Say, Hey, she's good. She just drank a juice or something like, they're both very good about keeping us, you know, does he have autism? Important? I would say there's something I don't know if that's if that's been a diagnosis 100%

Scott Benner 55:14
is it a weird thing to ask? It's not a weird thing to ask, Oh, because I had a hard time asking if you had ADHD. I was like, Oh, I don't want to make her upset.

Becky 55:23
Okay? No, no, no, no, no, probably I would say he probably does. I don't know 100%

Scott Benner 55:28
if he does or not. Do you think there's a moment when you look at him and go, I

Becky 55:31
just know he likes all the weird things that she likes. Just to see,

Scott Benner 55:35
wait, what are some weird things that she likes?

Becky 55:38
She's just really into, you know, like she loves the Comic Con stuff, the dress, you know, anything that she can dress up. You know, she's, she was a Harry Potter freak. She was Disney freak, universal freak. You know, we live near the theme parks, so, you know, she's got passes and he, you know, and she loves music and Taylor Swift, and like things that she just takes him to the extreme. You know, where

Scott Benner 56:00
is there a world where you imagined getting him in a corner one day and looking at him going, so what's going on here? Or do you or do you like? Don't think you will I asked, I

Becky 56:09
did ask him one day if he was on the spectrum, and he told me that he was okay. But then the way he said, it made me I was kind of confused, because he said, Yes, I was on this spectrum when I was younger. But I'm like, you don't just go off of it, you know what I mean, like, you either have it or you don't, interesting. So, and I didn't, I didn't, like, keep prying. Of course,

Scott Benner 56:32
it feels delicate to me, you know, yeah, like, I

Becky 56:35
just kind of assumed he, he probably is high functioning, like she is okay, would be my guess. But they both work, they both drive. They both, you know, did you have

Scott Benner 56:45
to have a sex talk with her? Yes, how was that? Course, I did have a good time with that one.

Becky 56:50
What, you know, what? Because she doesn't, her social cues are off. You know, she doesn't really read social cues very well, and so she's being very black and white. I can have those conversations with her and be very open and very black and white about it. And she's good. Oh, interesting, yeah, much easier than having them with my other teachers. They're like, Ah, my god,

Scott Benner 57:11
shut up, lady, yeah. Like, really,

Becky 57:14
you know, but, like, but hers, I can pretty much talk to her about anything. She's pretty she just kind of, she doesn't have a filter, you know, she has no filter. So you can pretty much talk to her about anything that

Scott Benner 57:25
sounds kind of nice, actually,

Becky 57:27
that part of it, it could definitely have its moments where it's easier, right? The no filter thing, though, can also, yeah,

Scott Benner 57:35
I wonder, Oh my God, you listen now, you're making me want to, like, interview, like somebody like your daughter. And I just want to know what foreplay looks like. Is it like a contract? Is it like real black and white? You know what I mean, be super interesting. I could tell you that part. No, I don't think she was, you know what I mean, like, is it like, Hey, do you think we should have sex at 1030 right? And it might be sure that sounds reasonable. Scheduled in, yeah. I mean, if we're done with television, like, you know what I mean, like, because instead of like, actually, I gotta tell you something that sounds much better to me. Like, all the other stuff that happens and you're like, signaling, and signals get missed, or they get ignored, or vice versa. Like, ah, actually, I think it sounds nicer that way. Yeah, it might be. It might be, I don't want you to think about that though. Make you upset, yeah? So I tried. My husband's

Becky 58:27
like, oh, I don't want to talk about that. He didn't want to think about that with any of his daughters. So,

Scott Benner 58:33
so you have to talk about birth control with her. Yeah, she's

Becky 58:35
on birth control. She's on birth control. Yep. Now she was on birth control before, like, from the time she was like 16, but I'm sorry, but from the time she was like 13, because she had just horrible periods, or real heavy, heavy periods, so she was on birth control for a long time. But yeah, now we did have to, have to talk about, you know, how important it is now that you don't miss one, right?

Scott Benner 58:58
Yeah, a lot of things we can forget, not this. Yeah. Do you think she has PCOS?

Becky 59:04
No, she does not. Okay. No, I used to do ultrasound for a living. That was my job. Yeah, she's been checked out. Gotcha?

Scott Benner 59:13
Yeah, I would imagine, once the heavy periods come, you probably looked Yeah. Okay, all right, so Becky, is there anything we haven't talked about that we should have. I don't think

Becky 59:22
so. I guess I just want to say thank you for your podcast. Because really, I don't think we'd be where we're at without it. I mean, we even did a six week diabetes class with a diabetes diabetes educator right after she got diagnosed, and we came out of there still not knowing anything. And everything was so old school. You know, everything was the just like we didn't have any technology. And I was like, I learned absolutely nothing from this six week class, really. And, yeah, I didn't learn anything, but your podcast has been a lifesaver for us. Yes, I mean I literally, or I say we have learned everything that we need to, even the endocrinologist has been no help. But your podcast has, I mean, thank you for doing it. Because, I mean, we obviously wouldn't be in five, you know, five, a one, Zs for sure on the Plus, you know, not being a year out, I would have known nothing about pre bolusing. I would have known nothing about where good range is. Yeah, we just left. We just left the hospital so uneducated, and even the endocrinology office just uneducated, like we just, we didn't, we didn't know anything.

Scott Benner 1:00:36
Are you near Orlando? I am. I'm speaking in Orlando this year. Oh, are you? Yeah, touch by type one.org. Go there. Look at their programs tab. It's free, okay, yeah, if you want, if you're interested in a day of like, that kind of stuff, if you think maybe that would get her interested in something like sitting and listening to somebody talk if she was interested or not. But

Becky 1:00:56
touched by type one, yeah. I've

Scott Benner 1:00:58
heard you talk about that, yeah. So, so seriously. Like, thank you. It's very it's lovely to hear. And I'm, I'm super happy it worked for you. Like, I really am, like, I'm sure there are people who listen or, like, I listen and nothing happened. So I'm,

Becky 1:01:11
I'm telling you, if you follow, if you thought, you know in your and I think the thing, you know, you're bold with insulin. You know, when you say that, you know people are scared. Like, I still get nervous. Sometimes I'm like, I know she needs more, but I'm afraid to give it to her, right? Like, I don't know why I get nervous about it, but as we go along, the more we're getting more. Like, yeah, she needs more. She needs more. Just give it to her. You know. Why are we afraid to give it to her? You know? Just do it. It works.

Scott Benner 1:01:37
I hear you. It's hard. Listen. It's hard for everybody, not just you, it's me, it's everyone, you know. Like, you start looking, and you're like, wow, there's OmniPod more in, you know? And, yeah, you start going through those variables in your head. Like, well, what if the site's bad, like, Am I really even putting it in? Or, like, what if it's like, Is it food? Is it did I miscount a carb? Like, there's so many things that run through your head, and when there's all those variables, you freeze up because, yeah, it's just what happens. So because,

Becky 1:02:05
if you know, we just give her, you know, and she's a high carb eater, you know, we haven't gotten her to where she you know, every once while, she'll have a chicken Caesar's salad, but she's pretty high carb eater. So her bolus is, she's a 5.5 ratio right now, so she gets a lot of insulin. Wow. And you know, when you've just given her, you know, 12 units of insulin, and you know, she's still going up an hour and a half later, you're like, dang, I gotta give more insulin, you know, or she needs to give herself more. How's

Scott Benner 1:02:34
her variability? How's her what variability? Like highs and lows?

Becky 1:02:38
She always seems to go high after eating, and when I say hi, seems like she always gets up to around 180 and then she'll come back down if we've done it correctly, right? There's a lot of times she's sitting at the 180 mark, 180 you know, 185 and we cannot get her down. And we're like, what did we do wrong? You know? Like, what have we done wrong, and we don't know yet. You know, we're still we're still learning. We're still learning. I would love to keep her one below 150 like never go above 150 would be my idea. But we haven't reached that, reach that mark yet. We're still trying to figure out the whole food thing. But I think a lot of her stuff ends up being the fat and protein prizes that we get later. And

Scott Benner 1:03:22
the last thing I wanted to ask you, I'm so sorry, is that like your g7 and OmniPod five, but you're OmniPod five and manual? Because at the moment, OmniPod five doesn't work with g7 but are you going into automation once it does?

Becky 1:03:33
I mean, I we would like to, but now I'm kind of nervous about it, because we have such tight control with our a 1c right now, the way we're doing things, yeah, like, I'm almost a little nervous about going into automation, because I have heard that it's, it's harder to keep, you know, as tight of control, not as aggressive as you're being, yeah, because we're pretty aggressive. I don't know. I mean, maybe for night time, it might be good, but during the day, maybe she'd stay, man, I don't know, interesting.

Unknown Speaker 1:04:01
Yeah, well, I

Becky 1:04:02
can't wait to cross that bridge when it gets there. I

Scott Benner 1:04:04
bet your whole life is we'll cross that bridge when we get there,

Becky 1:04:06
pretty much, pretty much. But, yeah, I just wanted to, I just wanted to rant a little bit about, you know, not get enough education as an adult. And even though they're adults, they're still kids. In my mind, at 18, you know, 19, they still need a lot of listen guidance. Autism

Scott Benner 1:04:21
or not, 21 not exactly the pinnacle of common sense and rock solid thought. You know what I mean. So it's, it's a tough situation, whether, no matter your situation, yours obviously more so. But listen, my son's 24 and the other day he was like, very like, honestly, looked at me. He goes, dude, in my head, I'm like, 14, just so, you know? And I was like, Oh, I was like, well, if we're being honest, I'm like, 15 of mine, so don't worry about it. I

Becky 1:04:46
know I still feel like I'm in that, you know, like I'm in my 30s when I, you know, I know I'm think of yourself, but I'm like, yeah, yeah, when I think of myself, I'm like, Ah, you know,

Scott Benner 1:04:55
we had this conversation last night, and Arden's like, How old am I? In your mind? And and I said, Oh, you're like, your current age. And she goes, How about Cole? And I said, I think of Cole more like 17 or 18. Is that just because it's a boy? No, not because of how he acts. I don't even know. I think it's because he's so stark he looks so he's like such a man now, like he looks so starkly different, that the bulk of my time with him was when he was younger. So if I just think of him my head, He looks younger in my head. And I'm sure that five or six years from now, after spending more time with him as an adult, when I think of him as an adult, he'll be there like that. But Arden, I don't know like I don't I honestly don't know why it happens like that. I

Becky 1:05:38
know like my daughter, my oldest daughter is 28 and I still, I It's still hard for me to think of her as 28 almost 30, you know, almost 30, right?

Scott Benner 1:05:47
Yeah, by the way, she's three years shy of the last baby you had age. You know what I mean, right? Yeah, right,

Becky 1:05:53
yeah. She's, she's, she wants no children, so I'm not worried about that. With her, she's stuck to that. But, yeah, in my mind, she's still, you know, she's still just my little kid, you

Scott Benner 1:06:05
know, all right, okay, well, Becky,

Unknown Speaker 1:06:07
you appreciate your time.

Scott Benner 1:06:08
I appreciate it.

Becky 1:06:10
Thank you. Thank you for the podcast and for all the info you put out there. It's very much needed.

Scott Benner 1:06:16
Oh, it's a pleasure, and I it's very kind you to thank me, but it's not necessary, but I will absolutely accept it and let it bleed my my whole day will be higher because of this. I have a lot of sit here, boring work to do for the rest of today, and if I get upset, I'm gonna think there's a 21 year old girl out there who has autism and type one diabetes. She's got a great a 1c and you did it, Scott, that's right. And I'm just gonna make myself feel better also, by the way, you guys obviously did all the hard work. I just made the podcast, but, well,

Becky 1:06:44
seriously, that was the hard work. The podcast is the hard work, you know, listen, implementing it is, you know, just what you got to do. I

Scott Benner 1:06:51
think what you did was the hard work. I think probably the reason why I have so much trouble taking the compliment is because it's like, I showed you a map, but you still had to climb up a mountain like it's hard for me to take like credit for that, you know what I mean? Well, you should, you should I understand what you're saying? I'm fantastic. All right, now, all right. Well, you were delightful. I thank you for coming on. Thanks. Have a great day. You too. Hold on one second. You

a huge thanks to touched by type one for sponsoring this episode of The juicebox podcast. Check them out on their website, touched by type one.org, or on Facebook and Instagram. You can use the same continuous glucose monitor that Arden uses. All you have to do is go to dexcom.com/juice, box, and get started today. That's right. The Dexcom g7 is sponsoring this episode of The juicebox podcast. Tickets for the 2025 juice cruise are limited. I'm not just saying that they actually are limited. We have a certain window to sell them in, and then that's it. Juicebox podcast.com, scroll down to the juice cruise banner. Click on it. Find a cabin that works for you and register right now. You are absolutely limited by time on this one. I'm so sorry to say that it sounds pushy, but it's the absolute truth. Juice cruise 2025 I hope to see you there. We're gonna get a tan, talk about diabetes and meet a ton of great people who are living with diabetes, if you or a loved one was just diagnosed with type one diabetes, and you're looking for some fresh perspective. The bold beginning series from the juicebox podcast is a terrific place to start. That series is with myself and Jenny Smith. Jenny is a CD CES, a registered dietitian and a type one for over 35 years, and in the bowl beginnings series, Jenny and I are going to answer the questions that most people have after a type one diabetes diagnosis. The series begins at episode 698, in your podcast player. Or you can go to juicebox podcast.com and click on bold beginnings in the menu. I can't thank you enough for listening. Please make sure you're subscribed or following in your audio app. I'll be back tomorrow with another episode of The juicebox podcast. The episode you just heard was professionally edited by wrong way recording. Wrongwayrecording.com. You.

#1348 Community Spotlight: Nightscout Foundation

Talking about places and people who help.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends and welcome back to the next episode of The Juicebox Podcast.

I'm back again with another community spotlight episode. They're short, but very informative, pointing out some people out in the community doing good works. Today, we're going to talk about the night Scout foundation and namie.org 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. If you or a loved one was just diagnosed with type one diabetes, and you're looking for some fresh perspective. The bold beginning series from the Juicebox podcast is a terrific place to start. That series is with myself and Jenny Smith. Jenny is a CD CES, a registered dietitian and a type one for over 35 years, and in the bowl beginning series, Jenny and I are going to answer the questions that most people have after a type one diabetes diagnosis. The series begins at episode 698, in your podcast player. Or you can go to Juicebox podcast.com and click on bold beginnings in the menu. If you're looking for community around type one diabetes, check out the Juicebox podcast, private, Facebook group, Juicebox podcast, type one diabetes, but everybody is welcome. Type one, type two, gestational loved ones. It doesn't matter to me. In today's community Spotlight, we'll be looking at the night Scout foundation. Everything I'm telling you right now can be found at night Scout foundation.org, night Scout Foundation was formed in 2014 as a direct and natural offshoot of the CGM and the cloud movement. Night Scout foundation exists to encourage and support the creation of open source technology projects that enhance the lives of people with type one diabetes and those who love them. This includes fundraising advocacy and direct software and hardware development. You've perhaps seen their hashtag, we are not waiting. And I think that that motivation is where all this started, a bunch of people who just wanted to have better access to their data so they could do things with it, and they didn't want to wait for a company to give it to them. Today, the night Scout Foundation does volunteering at events. They can help spread the word. They do coding looking for new solutions for type one and the people that care about them. They support people, and they're always looking for people to help and make donations. So go check them out at night. Scout foundation.org, you've probably heard guests on the podcast who have done coding on things like trio or Iaps and loop, and they'll talk about, oh, we got a little bit of money from the night Scout Foundation to help us get the work done. So think about that off in the world somewhere, a bunch of beautiful people who understand coding, they work on these DIY applications, and the night Scout Foundation helps offset their costs a little bit, keeping qualified, motivated people able to do the work. And then out there in the world, you get loop or Iaps or trio, those sorts of things. Current leadership of the foundation consists of Tanya Clark, John costik, Gail the force, Kate Farnsworth, Weston, Norgren and James wedding. These are people who have just put their heart and soul into you being able to have your data available to you. What does that mean? Like some of you might not know what the night Scout app is, but I can open my phone right now and open up my night Scout app, which is pretty awesome, and I can see my daughter's CGM data, right? So it's describing how it all works. Is pretty useless, because I'm not that technical, but I can see things about my daughter's pumping that I couldn't possibly see anywhere else because of night scout. It's a life saver. It's awesome. I don't even know another way to say how great it is. Like there's nothing wrong with the Dexcom. The Dexcom app, but night scout is next level. This is from the website, night Scout foundation.org, the foundation is a non profit that encourages the exploration and creation of open source technology projects that enhance the lives of people with type one diabetes. It is made up of a collection of people that care about using open source technology to improve the lives of those with type one. The board of directors have been heavily involved with night scout from the beginning, as users, developers and support team members. Current board members, as I listed earlier, have been around for a long time. Is what we're trying to say. The foundation is registered as a nonprofit in the state of Texas, in case you're wondering, and they have ongoing discussions with the FDA, right? So you're looking for people who are out there, you know, representing you the night Scout Foundation does that with the FDA, JDRF and other large, legitimate diabetes foundation. Yeah. Night Scout foundation.org, if you'd like to know more, I'm going to do one more organization today that was sent to me by a listener. This is Nami, the National Alliance on Mental Illness. Nami is the National Alliance on Mental Illness. They are the largest grassroots mental health organization. They are dedicated to building better lives for the millions of Americans affected by mental illness, it includes more than 700 Naomi. Is it naming Nami and Ami state organizations and affiliates who work in your community to raise awareness and provide support and education to those in need. If you need help or want to chat, you can text helpline to 62640, you can call them at 800-950-6264, and if you're in crisis, you can call or text 988, their website, namely.org, n, a, m, I dot O, R, G, just go right across the top, there's about section that talks about Warning Signs and Symptoms mental health conditions Common with when that are common with mental illness, different treatments mental health by the numbers. If you just click on your journey, there's a link there for individuals with mental illness, family members and caregivers, kids, teens and young adults, maternal and new parents, veterans and active duty members, identity and cultural dimensions, frontline professionals. They're involved in support and education around the world. You can get involved with them by making a donation, attending a walk, helping them with fundraising. You can create a memorial fundraiser. You can share your story. There's awareness events. You can partner with them. They have an on campus section. If you want to get them over to your college. They do a bunch of advocacy about policy and crisis intervention, public policy reports, everything there that you need to see. So once again, you can call their helpline, 800-950-6264 you can text helpline to 6264 zero, or chat online. And in a crisis, you can call or text 980, 8n, a, m, i.org It was sent to me by a number of different listeners of the podcast that said that they were exceptionally helpful with the struggles that their family was having. So we highlighted two things today, one that is very specifically diabetes, and one that, while not specifically diabetes, I think can be genuinely helpful for a lot of people in need. Are you starting to see patterns, but you can't quite make sense of them? You're like, Oh, if I Bolus here, this happens, but I don't know what to do. Should I put in a little less, a little more? If you're starting to have those thoughts, if you're starting to think this isn't going the way the doctor said it would, I think I see something here, but I can't be sure. Once you're having those thoughts, you're ready for the diabetes Pro Tip series from the Juicebox podcast. It begins at Episode 1000 you can also find it at Juicebox podcast.com up in the menu, and you can find a list in the private Facebook group. Just check right under the featured tab at the top, it'll show you lists of a ton of stuff, including the Pro Tip series, which runs from episode 1000 to 1025

when or if you need something that is represented by one of the sponsors. It would help the podcast immensely. If you would use my links to look into it or to make a purchase, those links are available in the show notes of the podcast or audio player you're listening in right now and at Juicebox podcast.com it's a simple and easy way to support the podcast. I can't thank you enough for listening. Please make sure you're subscribed, you're following in your audio app. I'll be back tomorrow with another episode of The Juicebox podcast. You.

#1347 The Mute Button

Fran has type 1 diabetes and autism.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends and welcome back to the next episode of The juicebox podcast.

Fran is 33 Why'd I say Fran? Like that? Fran is 33 she lives in England. She was diagnosed with type one diabetes 10 years ago and with autism. Just a few years ago, she was a teacher, but she's not anymore, and we're going to talk all about type one and a number of other things, including OmniPod five, AI for diabetes and much more. Nothing you hear on the juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan, don't forget to save 40% off of your entire order@cozyearth.com All you have to do is use the offer code juicebox at checkout. That's juicebox at checkout to save 40 percent@cozyearth.com when you place your first order for ag one with my link, you'll get five free travel packs and a free year supply of vitamin D drink, AG, one.com/juice box. Don't forget, if you're a US resident who has type one, or is the caregiver of someone with type one, visit T 1d exchange.org/juice box right now and complete that survey. It will take you 10 minutes to complete the survey, and that effort alone will help to move type one diabetes research forward. It will cost you nothing to help. Today's episode is sponsored by Medtronic diabetes, a company that's dressing hyperglycemia head on a topic that often gets overshadowed by the focus on hypoglycemia. Learn more at Medtronic diabetes.com/hyper today's episode of The juicebox podcast is sponsored by the Eversense 365 you can experience the Eversense 365 CGM system for as low as $199 for a full year. Visit Eversense cgm.com/juicebox, for more details and eligibility. Hi,

Fran 2:05
I'm Fran. I live in England, and I have type one diabetes. Fran, how old are you? 3333

Scott Benner 2:14
How long have you had type one

Fran 2:15
since I was 23 so, yeah, 1010, years

Scott Benner 2:19
and a half out of school by the time it happened,

Fran 2:21
yeah. So I finished university, and I was just about to start teacher training. In fact, I started teacher training three days after diagnosis.

Scott Benner 2:33
Teacher Training. Oh, that's interesting. So you go to university for what? And then you get out and train. How does it work becoming a teacher there.

Fran 2:42
Yeah. So you do, like, whatever your normal degree is, usually, and then there's like a one year, I guess it's sort of like a degree. You do it at a university, but you have placements in schools. There's another way of doing it as well, but that's the one I did.

Scott Benner 3:00
What kind of teaching were you thinking about doing at that

Fran 3:03
point, secondary school, maths, maths.

Scott Benner 3:06
And did you end up doing that?

Fran 3:11
I did, yeah, for 10 years, actually.

Scott Benner 3:14
Oh, you've just recently stopped. Yeah. Had enough of those kids.

Fran 3:26
There were a lot of things about it. I guess behavior management was never something that I was going to love. And the pandemic was interesting. I started quite enjoying the mute button, and then I kind of realized that maybe that was a sign. So, yeah, now I work at an educational technology company. When we make this, like online platform where you can go and learn GCSEs and a levels, which is like

Scott Benner 3:54
I'm offering, I'm holding in a laugh, imagining those kids talking you, being like and shut up.

Fran 3:59
Oh, you know, it gets even funnier, because at one point they realized that they could do that to me,

Scott Benner 4:05
that's fantastic. It's a whole generation of kids that didn't really go to school for a few years. Yeah, yeah. I've told this before, but I once opened Arden's door and she was on her bed with her laptop, like, positioned really strangely, and she was just bending her head forward and backwards. And I'm staring at her, and I'm like, what is happening? And she kind of shoos me away, and later I say, What the hell was going on? There she goes. I was pretending to do sit ups for gym class. I'm like, I'm like, what? So I said, A, you're doing calisthenics over zoom. And B, you're not actually doing them. And she goes, No. And I was like, Uh oh, this is this. Is it? I thought. Same thing you're talking about. I was like, There's no way that the teachers feel any differently about this than the kids do, like, it's just a disaster, right? Yeah, you would have been better off if you gave them a treasure map and sent them out into the world. And were like, Here go. Fine, fine. I guess you couldn't have done that either. But whatever you figured out you had enough of kids when you stopped listening to them as you were teaching. That's smart to get out of that. I appreciate that coming out of school a bright eyed young girl thinking she's gonna go help the youth of America. You're getting ready to start your next level of training, basically. And what happens? You get sick?

Fran 5:32
Yeah, so I actually were working at a school for a year before I started the teacher training, and near the end of that year, I started getting all the classic symptoms, you know, tired, really thirsty, going to the little lot that kind of thing. I kind of put up with that for a couple of weeks. And then I went, Oh, hang on, I've heard about this on Scrubs. Yes, a TV show diagnosed me first. So then I kind of figured it out. Had a blood test. They lost the results. Had another blood test. Phoned up a week later, and the receptionist was like, it says here, it's 13. That's high normal in your money, that's 230 and I went, hang on, let me Google that. None of the scales made any sense. I was like, we're 13. That's that's nowhere on any of these scales. That must be a different scale. And she didn't know what it meant, because she was the receptionist. Yeah, that was definitely in the diabetic range. But neither of us knew that at the time, so I put up with it for another six weeks or so. Then I eventually went to a different doctor. He did a finger prick in the room, which obviously they should have done the first time, really. And he went, Yeah, we're going to send you to the hospital today. So I said, Can I have lunch first? He said, Yeah, sure. And then I went to the hospital, and the very nice endocrinologist gave me some insulin and things like that. And three days later, I had to walk up a lot of stairs in the Library at the University, which did not enjoy. But then a week after that, the stairs became much easier. So you know, insulin is good. Was

Scott Benner 7:02
there a curmudgeonly janitor at the at the hospital, like scrubs, or were you having, like, a whole thing, nothing, nothing like that?

Fran 7:09
I don't think there was. Unfortunately, I

Scott Benner 7:11
can't put So wait, what do you remember seeing on Scrubs that made you think I have diabetes? This episode of The juicebox podcast is sponsored by ever since 365 and just as the name says, it lasts for a full year, imagine for a second a CGM with just one sensor placement and one warm up period every year. Imagine a sensor that has exceptional accuracy over that year and is actually the most accurate CGM in the low range that you can get. What if I told you that this sensor had no risk of falling off or being knocked off? That may seem too good to be true, but I'm not even done telling you about it, yet, the Eversense 365 has essentially no compression lows. It features incredibly gentle adhesive for its transmitter. You can take the transmitter off when you don't want to wear your CGM and put it right back on without having to waste a sensor or go through another warm up period. The app works with iOS and Android, even Apple. Watch you can manage your diabetes instead of your CGM with the Eversense 365 learn more and get started today at Eversense cgm.com/juicebox, one year one CGM

Fran 8:23
Turk gets type two in one of the later seasons. Really? Apparently, yeah, Apparently that was enough to tick me off. I don't know. No

Scott Benner 8:31
kidding, that's crazy, and not even a British Show, an American show, yeah.

Fran 8:36
I mean, you guys have a lot of good shows,

Scott Benner 8:38
I have to tell you. I just finished up watching the gentleman on Netflix and so talking that it just came out, but it's a completely like, British thing, and like, you're just freaking me out. Like, I totally feel like you and I are going to get involved in a crime together and shoot somebody so fantastic, wonderful. I'm having such a lovely time because I'm having like, a whole feeling here. I'm like, Oh, I'm basically a Duke. She's gonna help me kill some people. It's gonna be fantastic. Anyway, people should try the gentleman on Netflix. Okay, so you, you have all this stuff happen. Can I ask a question before we get too far down the road? Yeah, why is the bathroom called the loo?

Fran 9:21
I have no answer for that question. Seriously, it just is, wait.

Scott Benner 9:24
You really don't know.

Fran 9:27
I don't know. It just always has been, because

Scott Benner 9:30
here, if you ask me why you call the bathroom the bathroom, I'd say, Well, it's the room where you take a bath, right? So can we find out together? I mean, I'm gonna look. You just wait for me

Fran 9:41
to look. Oh, I know. I've listened to enough of the podcast to know how this works.

Scott Benner 9:45
Yeah, there's got to be some like etymology, entomology, reason here. Okay, hold on a second. The term Lou is commonly British slang for a bathroom or toilet. The origin of the word Lou is uncertain. Are you kidding me? But there are several theories. When I hear the. Theories, yeah, you're like, not really, but okay, hold on. French influence could be one popular theory is that it comes from the French phrase, wait a minute. Lou des, which means places of ease or comfort stations over time. This phrase might have been shortened to Lou, let's see you do toilet. Another theory suggests that Lou might be derived from the French term e du toilette, literally water or toilet, which refers to lightly scented cologne. The idea is that the toilet water became a euphemism for the bathroom. We're getting there Gardi loo. In medieval times, people would empty their chamber pots out the window onto the streets below. Before doing so, they would shout, Gardi Lou, from the French regards Lou, meaning, watch out for the water as a warning. This could have eventually been shortened to Lou and water closet. There's also a possibility that Lou could have come from the term Waterloo, a brand name of early toilets. I

Unknown Speaker 11:05
love it.

Scott Benner 11:06
I just didn't. I just figured it'd be like some like British thing, you'd tell me, but it turns out it's probably a French thing.

Fran 11:13
Oh, there you go. I would not have guessed that. I

Scott Benner 11:15
don't want to be too punny, but does it piss you off that it's a French thing and not a British thing,

Fran 11:22
not really. I mean, we have some pretty good ones. I grew up in a town called Reading, which is near London, and we have a word for now. I can't remember the real name. You know the little the little bugs that have, like armor, like tiny armadillos. We call them cheese locks, for some reason, I don't know why. Oh,

Scott Benner 11:43
wait, wait, wait, wait, oh, they're like, like, Roly Poly bugs or something like that. Oh,

Fran 11:49
yeah, I think that's yeah, okay. And it's only people in reading who call them that. It's not even just all of England,

Scott Benner 11:57
you know. So then when you say getting drunk? Do you say getting pissed sometimes? And do you think that means because you're gonna have to go to the bathroom afterwards, maybe, oh, my God, all right, I don't want to keep going down these roads with you, because you don't seem to know. And I'm just gonna wonder all day long, you get diabetes 10 years ago. Sorry about that. That was terrible. You go to what they call hospital, or do you go to a doctor? How do you handle that whole process? So

Fran 12:21
it was a doctor a GP for the original blood tests, and then I went to hospital for the kind of endo appointments, and I've been in under care of various hospitals since then.

Scott Benner 12:33
Do they keep you there? Is it an in and out? It was just in and

Fran 12:36
out. I was only there for an hour or two the first time, and then I went back a couple of times over the next week, once or twice over the next few months. Gotcha

Scott Benner 12:43
now, in your note to me, You talk a lot about just maybe what doctors could have done differently and like diagnosis issues, and so I'd like to, like, figure all that out. So first of all, there's a mistake in your diagnosis. How does that happen?

Fran 12:57
Well, that was the losing the first blood test and then the second one, you know, they they told me what the result of the blood test was, but they didn't tell me that that meant I had diabetes. Okay, so it took three months to get the final diagnosis after I'd figured it out myself.

Scott Benner 13:13
I see there's three months in there. Geez, okay, yeah. How was living for those three months? Were you declining?

Fran 13:19
Oh, it's terrible, yeah, by the time I went to that last doctor's appointment, I was, like, it was a five minute walk down the road, and I needed to lie down. When I got back, I was absolutely knackered. Like, completely useless to anyone feeling like you're dying.

Scott Benner 13:36
Oh yeah, yeah, thanks for saying knackered.

Fran 13:39
You're welcome. It came on so slowly, though, that I was kind of thinking like, Oh, I'm just lazy, or I've just gotten into bad habits, or I need to do more exercise and things like that. And you don't realize until you're feeling better, how much of a difference it

Scott Benner 13:53
was, yeah, that slow, kind of blissful drift into death, seriously, like your your body's just you're dying slowly, and it's just you're shutting off so gradually that you can't really tell, like, it's almost better if it hits you all at once, so that you're like, hey, something's viciously different than it was yesterday. You know. Yeah, that sucks. Do you think that what you're talking about here in your note about doctors being too cautious and not telling you things that you think would have helped you, is that from the start, or is it something you ran to later down the road? I want to know about that that early time and and you're coming to understand what it is you needed to do for yourself.

Fran 14:33
So I think the what I was told initially was pretty good, you know, I was after, I think, the first two days, they said, give yourself these doses at meals. And then after that, they were like, Yeah, once you're comfortable, you can just start carb counting for yourself. Did they tell you how to do that? He was doing that from the beginning. They told me to pre bolus. Yeah, they did okay. So that was, that was fine. And, you know, I'm sciency as well, so I kind of. Reassured them that that was something I'd be able to handle. And yeah, so no problems with that. But within about a week of being diagnosed, I'd started, sort of, you know, mentally inventing future solutions for myself, one of which was essentially the OmniPod you made up. Discovered that the OmniPod actually existed. I basically made up something that would do what the OmniPod does. Were you doing found out that the OmniPod existed?

Scott Benner 15:27
Fran, were you doing sketches like, how far did it go? Exactly?

Fran 15:30
I may have done a very brief sketch. The general idea was like a thing that you can kind of stick on yourself that has the insulin in it and just sort of sits there. And

Scott Benner 15:39
what was a great idea? A fantastic idea,

Fran 15:42
I know, yeah, yeah, did you not existed already?

Scott Benner 15:46
Did you not think of googling it before you started making it up? You

Fran 15:50
think I would have done? I don't know. I mean, I guess, I reckon my IQ had taken a significant hit by that point. Okay, you're

Scott Benner 15:57
a little dopey, yeah? So you're managing with syringes or pens at that point, pens, yeah, and you're just thinking like there's got to be a better way to do this than to be poking myself all these times. Yeah, yeah, you're right. That's kind of interesting, isn't it? How long did it take you to realize something like that actually existed

Fran 16:16
10 years I found out from the podcast about a year and two months ago, something like that, when

Scott Benner 16:23
you heard were you like those motherfuckers ripped me off? Yeah,

Fran 16:27
I think I swore out loud.

Scott Benner 16:33
Oh, my God. I've had this. I feel like I've told this on the podcast before, but I've had this moment where I forget what it was, and the story would have more validity if I could remember. But I used to do this, like running a little bit with my friends, where I was like, I was such a good joke. And then one day, we were sitting watching Seinfeld and first run, and it was right there, like they were doing it on the TV show. And I turned to my friend Mike, and I was like, if you sold my ideas, I will kill you the first time you realize you're not the only one having a thought. You know what? I mean, yeah, that's fantastic, though. Have you listen? Have you thought of any other things, like, maybe you got a gem in there somewhere,

Fran 17:11
quite possibly, I think I had, I did have this idea about hooking up your like, fitness tracker, like a Fitbit or something to like, a private instance of some kind of AI, and then stick your, you know, OmniPod data in there, and Dexcom data and stuff like that, and have it look for patterns. And presumably, eventually that that will be where it goes. You know, everyone has their own AI that essentially manages their blood sugar, similar to OmniPod five, but like smarter and drawing a lot more conclusions about, you know, the patterns of your life and when you're ill, what does that do to your blood sugar and all those sorts of things.

Scott Benner 17:52
Do you think it would upset you? Fran, if I told you that tomorrow's episode is with somebody who's talking about something called Vision AI, which is a thing you can actually put your Dexcom data to through your night Scout, and it will know what your blood sugar is, and you can ask it questions about your blood sugar. And it's also AI based, and it has access to, like, over 100 episodes of the podcast to help it answer things you think you'd be like, Oh, that's what I meant. I

Fran 18:21
think I'd be like, excellent. Oh, okay, let's get this going as soon as possible. Well, it's, I really don't need to own this. You

Scott Benner 18:27
don't need to own the idea. Well, it's, it's, it's, it already exists. It's um, idea brought out by a gentleman named Justin and his wife, and they approached me a number of months ago and asked if I would just help them. At first, they were just looking for, like, a little bit of advice, you know, kind of back end advice. And then at some point they said, do you think you'd be comfortable if we absorbed some of the podcast into the knowledge of the AI? And I was like, I was already working on that, but it sounds like you're way ahead of me, and you have the infrastructure for it that I don't have. So I was like, you know, go ahead. Like, go ahead and do it. And so it's pretty cool, yeah, yeah, I do believe that you're right about that being really valuable in the future for people. So any other ideas about time travel, perhaps something that hasn't been gotten to yet. Like, feels like you're, you're on what they call the wrong side of the cutting edge.

Fran 19:30
I do, go ahead, I feel like one of those, like, out of the box type thinker. People like, I have weird ideas, and people look at me like that, that's crazy. And I'm like, Yeah, but no, it does actually feel like it's going to be better, though. And it just seems like it often takes people a long time to be persuaded by things just because they're new. Yeah,

Scott Benner 19:49
yeah. There's going to be a lot of uncertainty, especially with AI like people, there are going to be a lot of people who are just like, This is not a good idea. Or, you know. Know it's gonna, I don't know, blow up the planet, or do blah blah. I don't know what people are gonna be concerned about. And I mean, God bless them, I could be I could be wrong, but I feel like, very strongly, actually, I feel like this is gonna help people with diabetes significantly. The idea of this stuff eventually, like right now, vision, I think, has like a 24 hour knowledge of your blood sugar. But when they expand that, and it suddenly has three days or seven days of your blood sugar knowledge, and you can start asking it like, do you see any patterns with Milo's? Are they coming? You know, after meals, before meals? Like, what do you like? What do you think is going on? And something that can actually kind of step back, see all that, and just make suggestions to you, for you to look at is a big deal, or how about, I don't know when this will be out. This week, I worked on something where I took the episodes of the podcast. There's three episodes of the podcast called the math behind the math behind basal the math behind insulin sensitivity, the math behind insulin to car ratio. I forget exactly what they are. I let those episodes be absorbed into I use chat GPT four. Oh, and then I said, you know, read this transcript and explain to me how to, you know how the 500 rule works, for example. And it explained it back to me, and I was like, Oh, my God, that's fascinating. It took that out of the conversation that Jenny and I had. I said to it, do you know the math of this? And it said, Yes. And showed me the math, and I said, Can you turn that into an app that I can embed on my website? And it was like, boom, here's code. I dropped the code into like, a non public page of my website so I could see it. And then, sure enough, there it was. I'm like, so then I did it with, like, how to find your basal insulin. And I was like, there it was. It's an app to figure out where your starting point is for your basal. And I said, Well, that's very cool, I swear to you. Fran, then I went back to it, and I said, I think this needs a disclaimer. Needs a disclaimer. And it like wrote disclaimer language. I read it, I was like, that disclaimer language looks good. And I said, I think the disclaimer language should be attached to a radial button, and until you agree to it, the app doesn't open on the page. And then it rewrote the code again.

Fran 22:18
And now that's really cool, because it doesn't always work first time like that, right?

Scott Benner 22:22
You gotta know how to talk to it. Know what I mean? Yeah, yeah. And when you stop and really think about it, the math behind figuring out, if you have, you know, if you how your basal insulin should be set up is pretty common. It's it's common math that every diabetes educator knows, but we don't know it. And, like, you know, as people walking around, and you see, people get diagnosed all the time, and they're, they're, you know, their person says, oh, here, this is your starting basal. It almost feels like they're magical. Like, oh, you just knew it's point five an hour. How did you know that? Ah, you know, like, I don't worry about it, but they're just doing this formula. And then you go out and you know, your your seven year old gains 40 pounds over the next five years, and people are running around going, I don't understand why their blood sugar's high all the time. Well, you could maybe look at your basal and so again, like, maybe you haven't moved it up enough, or or whatever. And you could just go back to these things once in a while. Plug in your weight. I'm moderately active. This is my age. Where do you think my basal should be about? Boom, there's the answer. Like, geez, you know what I mean? Like, how simple AI will do that for people all the time, and once you get accustomed to it, imagine going in division one day. I'm gonna have to bring this up to the owner. But imagine going in division one day and saying, go back and look at my blood sugars over an amount of time, and then look at my settings. Here's my current weight. Do you think there's any adjustments to be made here? And it being able to say, Oh, I think your insulin sensitivity should change. There's nothing crazy about that that's very, very doable, you know. So I like your ideas, brilliant. Yeah, they're fantastic. Okay, so you do get good knowledge. I mean, because people are telling you to pre bolus 10 years ago, that's fantastic. You know, they got you off of just start with this, count your own carbs very quickly. Does it keep progressing? Like, how do you end up finding the podcast 10 years later? Like, what's in between that leads you here, and now we're going to hear from Medtronic champion Terry. How long have you had diabetes? June 2025,

Speaker 1 24:33
it'll be 50 years. I'm very much involved in the diabetic community in a lot of areas, and I helped start the walk here in Lincoln Nebraska,

Scott Benner 24:42
when you were first diagnosed, what was management like?

Speaker 1 24:45
I started out on beef, pork insulin. And I tell people jokingly that I used to smell like a bacon cheeseburger.

Scott Benner 24:53
Tell me about the impact of Medtronic technology. Finger stick is only a

Speaker 1 24:57
point in time, and that first. Years for me was extremely difficult because I had high blood sugars all over the place. The CGM, to me, was the lifesaver.

Scott Benner 25:11
Prolonged hyperglycemia can lead to serious health problems and long term complications. Early, inconsistent management of hyperglycemia is critical. Learn more at Medtronic diabetes.com/hyper,

Fran 25:24
so I got all that information pretty much up front, and then in about three months, my a 1c went from 13 to 7.7 and then I got no more new information for about 10 years. And my a 1c stayed at 7.7 for that whole time. And I guess really, I just assumed that there wasn't other information, which, looking back on it, was obviously a really dumb thing to think. But like, you spend so much energy just keeping going day to day that you don't stop and think maybe there's something bigger here that I haven't been told. And then I went to see. It was a little show in a tiny, tiny Theater in London somewhere, and it was a guy doing kind of like DJing, but it was also a comedy show, and it was all about diabetes. So he had type one, and he was, you know, making hilarious musical puns, like going low, low, low, low, you know, that kind of thing. And it was just like an hour of that, and he mentioned the podcast, and I was like, Oh, wait, so I hold

Scott Benner 26:39
on, friend. You're blowing my mind here. There's a man in England doing a stage show about diabetes, and he brings up my podcast during it.

Fran 26:51
I mean, if I remember rightly, I think he might have actually mentioned the podcast, or at the very least, he talked about communities around type one, and more generally, maybe then I Googled it. He might have actually named the podcast.

Scott Benner 27:03
Oh, you know, that makes me like, I feel touched by that. That's something I know. I thought you'd like that. No, it made me a little weepy inside, not like out, really. I didn't get an actual moisture in my eyes, but I had that feeling in the top of my chest, you know what? I mean? Yeah, yeah. I was like, Oh, this is lovely. But then I imagined you singing that song again, that just killed the feeling completely. Oh, that's so nice. So you were like, I'm fascinated by the idea that, like somebody, you had a big high number. Somebody gave you some rules, that number went down significantly. And you probably thought that worked pretty

Fran 27:38
much, yeah. Kept saying, Oh, you're doing pretty well. Let's see if we can reduce those spikes at mealtimes with longer pre boluses. And I was like, I'm a teacher. I get like, 45 minutes for lunch. This is the best I'm going to do. But yeah, that was pretty much all I had for the next nine or 10 years. So

Scott Benner 27:53
you think if you don't go see the man sing, you don't go looking around more, and you you live a seven, seven, A, 1c, existence your whole life, quite possibly, no guiding. How about that? Whether he said juicebox podcast, or you just heard community and you went and looked so now, when you go find other people talking about it, what's that initial feeling like when you go, Wait a minute, am I listening to somebody over here with a five, five? This guy's got a six to like, how does that strike you?

Fran 28:22
So I basically listened to the podcast, like, I don't know, four hours a day for the next two weeks or something. I was just sort of head on in the background the whole time, and my brain sort of exploded sort of continuously for that entire time. And I had an end of appointment coming up, and this is where the whole story gets really intense. Again, for context, I'm also autistic, which most of the time is like, you know, just kind of the quiet little thing in the background, but just sometimes I'll kind of get worried and anxious about something, and then I'll sort of feel very intense about fixing it. And that's what happened here. So I made myself a great big list of things that I wanted based on the podcast, and then at the beginning of the list, I put the answers to all the questions that my endo asked every time I saw him, because I didn't want to talk about that. I wanted to give him the piece of paper and then talk about the stuff I wanted to talk about. So I was very prepared. Feeling good, I went into my appointment, he insisted on asking me all of those questions verbally anyway, despite having a copy of my nice long list in front of him, he talked a lot, very slowly, as he always did, and we got nearly to the end of the appointment before we really talked about any of these things I wanted, like OmniPod and Dexcom. I was doing my best to hold in my frustration, but also be as efficient as possible, because, you know, he's got, like, 15 minutes to see me, I want to get this done. And basically all I got was like, Oh, I don't know if we can give you a pump, which was frustrating, because he'd mentioned pumps to me three times before. And then if every time it was, oh, we'll talk about it next time. And it's not like I was going, Oh, no, I don't want to pump. I just every time. And my answer was, I don't know, it sounds a little invasive, which to me, is not negative enough that a doctor should immediately give up, right? Yeah,

Scott Benner 30:07
but then when you finally came back and showed initiative, now they're now, it's not, it's off the table now,

Fran 30:13
well, he said he just didn't know. He didn't know the answer. He wasn't even telling me no. And I was like, but what? How? How can you the Endo, like the top of the food chain, not know the answer to this question? So anyway, that was very frustrating. I went home and had, honestly, a pretty significant meltdown on the phone to my parents, but I did manage to get transferred to, like, a different group of doctors in the hospital. They started, you know, contacting me. One of them was like a, like a dietitian slash diabetes nurse, and I got in contact with him, and I started having lots of appointments with him, just sort of trying to figure out the other stuff that was going on, which I'll tell you about in a minute. And eventually, I got switched to a new Endo. I got approved for the OmniPod dash, and I got the dash. And then about three months after that, the OmniPod five came out, and I got that almost immediately when it was available in the UK. So I did get what I wanted. Just gonna

Scott Benner 31:17
say, I know the man that went over to the UK to set that up for OmniPod, it's like, it's so funny. You don't think about it like that. But somebody from here had to go, all right, I'll go live there. And then, you know, went over there, set up an office, got the whole thing together. Took, takes a lot of time to get something like that happening. It's really interesting how it to see the end of it, where you just get it. It's pretty cool. Actually, did you ever figure out why the doctor slow walked you? Or did you just, like, move on, like, I don't I'm not gonna deal with him anymore. I'll go to somebody else. Yeah,

Fran 31:49
I mostly just kind of fired him, to be honest. Like I tried to do it as gently as possible, and, you know, not be rude about it or anything, but I just sort of said, like, Could I be switched to this other one who I've heard good things about from other patients, and who knows lots of about pumps and things. You

Scott Benner 32:06
should have said it very slowly over 15 minutes while you were telling him so that it was, I mean, quite possibly as frustrating as possible for him. Yeah, you live 10 years, basically within a 1c in the sevens, injecting with a pen. Yeah? And no CGM,

Fran 32:24
I started funding FreeStyle Libre after about a year and a half. You did that out of pocket, yeah, which was just not cheap. After a while, I managed to persuade the NHS to start paying for that. For me, I think I was still self funding for a year or two, something like that, praying. You know, I

Scott Benner 32:44
don't know how this happens. Like, yesterday, I interviewed somebody from India today, England. I don't know how that happens, like, because it's not like, I put out a call and I'm like, if you don't live in America, I want to talk to you like, it just, it's random. But she was telling me yesterday that her libres. She can, she can only get the libre one, and the sensors cost her the equivalent of a third of her rent. And then she started, yeah, she started telling me what stuff cost there, and it's, my God, it's as insane as it is anywhere else. And even maybe more so, really interesting. So you're self funding a libre for how long? I think it was a year or two. And then you pushed and got, what do you got? Dexcom after that?

Fran 33:27
No, I stayed on the libres, actually. And after a while, switched to libre two, and I didn't get the Dexcom until I was getting onto the dash and preparing for omnipodent pod five,

Scott Benner 33:41
I see you're moving towards that. How did you like libre it

Fran 33:43
worked well for me, yeah, nothing, yeah, particularly once it become, once it became pretty much a scene. Basically, the scanning was good. It was a huge improvement on the finger pricks, but the CGM functionality was really cool.

Scott Benner 33:57
Yeah. I mean, not having to scan it is a big deal. As far as accuracy, do you see a difference between Lee Berry and Dexcom?

Fran 34:05
I think maybe the Dexcom is a tiny little bit more delayed, but nothing major. Okay, I actually wore both, both together for a little while at the beginning, just because I wondered. And yeah, it seemed to be pretty

Scott Benner 34:20
similar, gotcha. And you're wearing a g6 now, obviously, because you're wearing OmniPod five.

Fran 34:24
Yeah.

Scott Benner 34:25
Okay. How do you like having the algorithm?

Fran 34:27
Oh, I love it. So okay, so this is the second half of this year's story where this becomes really interesting. Is about a month after that really frustrating endo appointment, I started having lows at night, and like a lot of lows at night, every single night, I was having multiple lows, and they were very persistent, and then it was going high in the morning. And I don't think it was the hypo treatments, because I stopped. I tried starting myself high in the evening, and then I watched it go down, but not quite high. Post, I didn't need to treat, and then came back up again, and there was this huge drop, like, really, quite a large drop, and then it was going back up again. I was like, What am I? What is going on here? Yeah, this dietitian who was great, he's really good at talking through, like, dosing and stuff. We fiddled with stuff. We changed my basals. I was already splitting the dose, so we fiddled that around. Nothing was working. The only thing that fixed it, after a good three months of multiple hypos a night, was the dash. And I did that by, you know, they they get you on the dash, and they're like, so you probably go with a fairly flat basal rate all day. And I was like, No, that's not what I'm doing. I'm gonna go for naught point eight an hour during the day, and at night, we're doing naught point one, five in the middle of the night. And it kind of ramps up and down like the end of that, and immediately perfectly flat blood sugar all night. Yeah? So not only do I have this weird basal profile, but also it completely changed overnight, yeah,

Scott Benner 35:57
that's the interesting part, right? Like you were doing fine, and then all of the sudden, is there any hindsight that helps you? There? Do you have any changes in like, God, I I'm sorry, menstruation, stuff. Like, I don't know. Like, why I, like, no, why did I think I was never gonna have to talk about this if I had a podcast? But, like, stress, uh, big life change, nothing that you can kind of look back on and go something shifted. I'm

Fran 36:24
autistic, Scott. I've been stressed since I was about six. No, nothing. The only thing that changed, well, okay, admittedly, I was more stressed because my expectations around my blood sugar had changed very suddenly. There was a bit of extra stress there, but that was by no means the first time that had happened. You

Scott Benner 36:45
didn't start exercising. Did you start using cocaine? Like, nothing big, right? It just was like, No, nothing. How about that? No.

Fran 36:53
Just my expectations around diabetes changed and my diabetes changed at the same

Scott Benner 36:58
time. How about that? I'll be down, and then the doctors are not interested

Fran 37:01
in this. They don't want to look into why that might have been or anything like that.

Scott Benner 37:05
Oh, no. You tell them about the lows. They just talk about, like, shutting off. Like, did they talk what did they do? Anything? They just tell you to treat it. Did they tell you to eat a snack? Like, what kind of banal bullshit Did they give you

Fran 37:17
while I was on pens? It was, yeah, treat it. Consider running yourself higher at the start of the night. And yet, to be honest, pens can't fix this. So I was like, good, so I'll be on the dash really soon then. And they were like, well, but I got funding relatively quickly compared to most people. I think because I was just really pushy about it. Before

Scott Benner 37:37
the pump, you were shooting basal insulin once a day. What kind of insulin was

Fran 37:41
it twice a day? And it was levemere lever mirror,

Scott Benner 37:45
and you were always getting low at the same time overnight. Did you try moving the lever mirror around? Oh,

Fran 37:52
yeah, didn't work. Yeah. I drew diagrams. There was a whole scientific investigation going on, and at the end of that, the dietician guy was like, Yeah, we This just can't be done.

Scott Benner 38:02
I wonder if everyone listening isn't imagining, like I am, like that you have a diary somewhere with, like, every amazing thing that's ever been invented and and you've got it sketched out, but the date is always three years after it was invented. And then in there also is your love mirror diagram and everything. Scott, I think we can take oil out of the ground and turn it to gasoline and run engines with it. I've been having some big thoughts about that. Oh my god. I love the diagram idea about the lever mirror, though, but I know what you mean, like, because you're because you've already learned to how did you learn to split lever mirror? By the way?

Fran 38:47
I think it was suggested by one of my doctors, to be fair, just to get it a bit smoother. I think I was on Lantus before that, and that was once a day. Yeah.

Scott Benner 38:59
I mean, splitting lever mirror is, like a classic use of it, but I just didn't know, like, it's interesting. You do get decent information from your doctors, more so than a lot of people, actually, yeah, yeah. But then they fall short in other places. Sometimes, I guess this is what it is, though, you know, you do really have to chase down the ones that can help you. And,

Fran 39:21
like, to be fair to them, it's only recent that really, you could actually reasonably get hold of omnipodney pod on the NHS. Like, Oh, yeah. I

Scott Benner 39:29
mean, yeah, you live in a country that's, like, the size of Jersey. What's that?

Fran 39:32
You guys are just really far ahead of us? Yeah, yeah. I

Scott Benner 39:35
mean, we have a whole, like, I don't know if you've noticed, it's a we're a superpower, tons of land, money, missiles, we could pretty much do whatever we want. You're, I mean, you're living over there on a patch of dirt, like, it's, it's like, as big as, like, one of our highways, you know what? I mean, like, it's just, Oh yeah, absolutely, don't make us send Texas after you wait what

Fran 39:57
we do have cars here. Oh,

Scott Benner 39:58
I know. But you put the steering wheel. Was on the wrong side.

Fran 40:00
That's true.

Scott Benner 40:02
How'd you mess that up?

Fran 40:06
Maybe we just like to be different. Fran,

Scott Benner 40:08
I gotta tell you something. There's a whole like thing to be made there. Like, how does that like? Why does that matter? Like, why does some people drive on one side of the road and some people drive on the other side of the road? Why is that not a universal thing,

Fran 40:20
organizational issues, I guess, yeah, just interesting. Two people were like, We need to be able to drive. I mean, when we had carts, you could sit on either side of the car, right? Yeah. And then somebody invented cars, and somebody over on the other side of the pond was like, Hey, that's a great idea. I'll build one like that. But wasn't looking closely enough. So they, I don't know it. Just had to pick one side or the other. I guess you

Scott Benner 40:41
got any diagrams of cars in that book of yours over there, 1970 drawn in 1995 and it says, I think we could revolutionize this horse thing. I refuse to drive a car. They're terrified, really. For you you don't like Yeah.

Fran 40:57
I mean, I passed my test first time because my parents told me that if I passed, I wouldn't have to drive again.

Scott Benner 41:03
What a parenting move. I love driving. I don't drive enough. I feel like there are days when I'll, like, in the middle of the day, like, I don't know, one of the things you might want to learn about being a podcaster is that I can kind of make my own schedule to some degree. And there'll be times that I'm just sitting here working, and I'll stand up and I'll be like, I'm going out. And I sometimes don't believe that the place I'm going is important. I just get in my car, I put the windows down, I put on some pretty obnoxious music, and I drive for a little bit, and at some point I enjoy driving a little faster to let out my adrenaline. But none of this is appealing to you.

Fran 41:39
Oh no, that's, that's fine.

Unknown Speaker 41:46
Oh my god.

Fran 41:46
I mean, I have to say, like, I live in a world of privilege, because London has good public transport, so I didn't need to drive. Well,

Scott Benner 41:54
yeah. I mean, you're, you are in a city, so yeah, I take your point, like, but I've, like, like, a couple of months from now, Arnold go back to college, and I'm gonna go down there to help her get set up in a new place. And I'm looking forward to, like, driving 700 miles, like, by myself for a full day, like just getting in a car. And just none of that sounds attractive to you at all.

Unknown Speaker 42:17
Not much. Okay,

Scott Benner 42:19
no problem. Can I ask about this? Because I always feel like people hear this from adults and say, Where did this come from? So like, you're 33 you feel like you've been you know, you've known you've had autism your whole life. Like, how has that impacted you as a child, and how does it work as an adult? How do you get diagnosed? And why do you, in my opinion, like, just from talking to you for 45 minutes now, like, if that's not a thing, you would have told me that is not a thing I would have guessed about you. So can you walk me through all that?

Fran 42:57
I actually got diagnosed at the age of 28 okay, I don't know. So when I was a kid, I had, like, a lot of anxiety and a lot of meltdowns. Academically, I was ahead, but some of the kind of social stuff was a lot airplanes used to cause major meltdowns. I didn't really like the cinema because it was too loud. Apparently, those sort of situations were just short with anxiety, things like that. I don't know. Nobody ever really thought to find out, I guess. But then I sort of suspected as I grew up, and then I met somebody who he's autistic, and we chatted for a bit, and and he, he just kind of asked me, like, like, had you guessed that I was autistic? And I was like, I think, I think you've mentioned it in fact. And then I said, Well, I think, I think, you know, it's possible that I'm also autistic. And he went, Yeah, you are. I was like, Oh, okay. So then I got diagnosed, and

Scott Benner 43:59
explained a lot, and did it help you getting the diagnosis, like, how did it, how did it comfort you, or, or, or help you?

Fran 44:06
There's, there's a kind of description that I think fits quite well. It it's really comforting to know that you're a normal zebra, not a broken horse. Okay, say

Scott Benner 44:20
zebra one more time for me now I kind

Fran 44:21
of have a word please.

Scott Benner 44:23
Yeah, thank you. I appreciate that so, but it's not like, I mean, it's not like you have a job, right, and you taught kids. I mean, not Well, it sounds like at the end, but in so I was doing an

Fran 44:35
excellent job. Thank you,

Unknown Speaker 44:38
even when you couldn't hear them.

Fran 44:42
Hey, they don't necessarily need to be talking in order for them to be doing that, not all the time. The mute button was a toggle thing. You know, you turn them on and off

Scott Benner 44:50
when you the mute button might be the name of your episode, by the way. So, so there's a comfort level to it, like, is there just because, you know, there's this. Kind of like, I mean, it's hard not to have this feeling that, like nowadays, like in the last handful of years, everyone feels like they want to be diagnosed with something I don't even mean, like autism. Like, people really want to be labeled, isn't it funny? Like, how things change? Like, you know, when I was growing up, it was like, I'm different. Don't label me. Don't lump me in with those people. Like, that's how everyone thought. And now they're like, tell me what's happening to me, what's wrong with me, what category do I fit in? It's interesting how people's like minds shift so like, that helps you though to know where you fit.

Fran 45:38
I mean, I think there's two aspects of it right. First one being society and people in general are a lot better at looking at a label and not necessarily assuming that everyone that uses that label is the same, yeah. And the other one is, is just, I think, okay, if I said, Scott, what's your job? And I and you weren't allowed to use the word podcaster, you'd have to go, oh, you know, well, I do this thing where I sit in my chair and I talk to somebody, but they're not really there. They're somewhere else. And we talk about this stuff, and then I put it somewhere where other people can hear it later. And you have to do that every time you know and explaining yourself becomes difficult, and that means that being understood is difficult, and particularly when you're autistic, that's been a problem your whole life anyway, and it's very frustrating, and it it makes it harder to connect with people. I think

Scott Benner 46:33
what a great explanation. It's fantastic. Thank you. That very clarified it for me. Okay, did you have that written in your book, or did you come up with that off the top of your head, I

Fran 46:42
guess off the top of my head, but with the benefit of having thought about it before?

Scott Benner 46:46
Yeah, no, it's not your first time putting it into words, but I I really appreciate that, because I'm trying to understand that. Like, why do like? It just feels like everybody wants to be something. And I don't know if that's me being old, you know what I mean, and like, but it does feel like that to me, like everybody's like, I want to do this. You're like, tell me I fit here. Or like, I'm like, Just go be yourself. But your explanation is really clarifying. If you were 25 in 1980 How do you think people would have described you? People already

Fran 47:16
described me as weird. I described myself as weird. I decided to reclaim that word very early in my life. Yeah, I think they just think I'm slightly weird. You know, you heard of Uncanny Valley. I think, I think people get that with me when they don't know me very well. Okay, I think it gets in the way when I'm auditioning for musicals

Scott Benner 47:34
as well. You do the singing and the dancing I do. I do

Fran 47:38
a lot of the singing and the dancing just for funsies, not a professional thing or anything,

Scott Benner 47:42
but it's lovely. How do you do that? Is that a group of, like, a group that you have, you belong to a club, I don't know what to call it, but, like, how does that happen? Yeah, it's

Fran 47:52
essentially, it's an amdram society amateur dramatics, yeah, just kind of the thing we do in the evenings

Scott Benner 47:59
is this because you don't like Dungeons and Dragons? I do like Dungeons and Dragons. I

Fran 48:03
do that for weekends. I

Scott Benner 48:04
was just kidding. I knew you did. I was just checking. So I'm oddly good at picking out people's things. It's possible, if someone said, Scott, what do you do for a living? I'd say I generalize, but I'm really accurate about it.

Fran 48:20
Well, to be fair, Scott, you don't get that many points for figuring out that I'm a raging nerd. It's kind of obvious.

Scott Benner 48:28
Fine, but the people who are surprised just now, like, how do they know that? Let them be surprised by it. Okay, to them. I look like, I look like a soothsayer to them. So what that be? Yeah, the last line of your note to me, I don't understand shameless bribery in the form of a limerick.

Unknown Speaker 48:47
Yeah? So I have a poem,

Scott Benner 48:50
but you have a poem that you want to share with me? Yeah? Okay, all right, go ahead. See. No,

Fran 48:55
I didn't know how difficult it was going to be to get onto this podcast, and I wanted it to be successful, so I thought I'd use bribery.

Scott Benner 49:01
I was just like, I don't know what this means, but I do know what a limerick is, and does it doesn't start with There once was a girl in Nantucket. Does it? Because I don't want to hear that one. It doesn't, okay, okay,

Fran 49:13
all right. Here we go. There once was a guy named Scott. We think he's smart. He says, Not if your blood sugar's high and you want to know why he says, Don't overthink, take a shot.

Scott Benner 49:23
Oh, my God, that's fantastic. How quickly is that in your book? That's got to be in your book, right?

Fran 49:28
It's on a Google Doc. Okay, Google.

Scott Benner 49:30
Your diary is a Google Doc. But how long does it take to come up with that?

Fran 49:34
Oh, like, two or three minutes. No, see,

Scott Benner 49:38
I could never do that. I don't think there's something I like the sing song. There's like a beautiful sing songy thing to it. I'm very not well. Thank you. I'm touched.

Fran 49:47
Thank you. Well, you know you don't like a proper compliment too often, do you?

Scott Benner 49:53
No, I know it does work better this way. I'm learning right now, actually, as you're doing it, because I can ignore the part where you said. I was smart, and just go to the funny part of it. Exactly, yeah, that's good for me. You think I'm smart?

Fran 50:06
Yeah, Scott, you got my a 1c from 7.7 to like, 5.6 in six months.

Scott Benner 50:12
I got your a 1c from seven, seven to five, six in six months. Don't leave out the part where I did it over the internet. I don't know you, and I never spoke to you. Exactly, yeah, no, I'm pretty much a genius, but I don't want it to be said out loud, because I think it ruins my ever man quality. Okay, let me share something with you. I hope this is funny for people. I was texting with a friend yesterday, and she paid me a compliment about the about the podcast, and hold on, let me I want to find it for you. Okay, she said you have Scott Benner, I don't think you realize how unique you are. So she was talking about, like, diabetes organizations and how I appear to be outpacing them significantly on doing the thing that they say they're doing, which is helping people. She says, you have this advantage that they don't have you have you. And she says at the end, I you know, I don't think you realize that. And I said, Hold on a second. I'm sorry. And then I lost my place. I said, you're very nice. But trust me, I know it's just distasteful to say out loud, I appreciate that. You know as well. I don't think I'm I actually, I would have to tell you that in most walks of life. I'm, I'm a fairly average person. I do think that I'm, I'm good at building a narrative like so there's this thing that's happening, if you're listening to the podcast, that you don't know is happening. So Monday show and Tuesday's show don't seem connected, and they're not. And so I don't run themes that are obvious when you look at a micro snapshot of the podcast, but if you stick with the podcast and you keep listening, there's a macro idea that covers the whole thing. And if you stay in it long enough, like you did, you power listen for hours and hours and hours for months like so you basically just got your 10,000 hours of the podcast real quickly. There is a theme that is spread out so widely that you almost can't see how it ties together. It just kind of magically ties together as you're listening. And I will tell you, and I will take full credit for this. I am doing that on purpose. I fully believe that, yeah, but I don't know how I'm doing it, and that you have to believe too. Like, there, there are people in my life. Isabel's one of them. She'll remind me once in a while what I'm doing, because she's like, I don't think you know, and I do think that's true, like, to some degree, like, I just get up every day do the thing I do. I don't have notes. Nothing's written down. I've never planned anything. All I have is a whiteboard with words like scribbled all over it. And I look at that board sometimes while I'm recording, sometimes while I'm working, and then I go, okay, that part's next. And then I move in that direction. But you guys don't see it, because I'm not like a person who's like, this week we're gonna talk about this, you know what I mean? Or this episode is about this thought. I would much rather have a conversation like the one I just had with you, which I think is entertaining and interesting, and then let the takeaways be what they are for whoever can take whatever is in this one. And if I went back, I could thoughtfully hammer apart our conversation and tell you where the lessons are in it. But I don't even care, like people will take them out, or they won't, or they'll get the same lesson out of a different conversation later. I don't like with a mallet, like teaching. Do you know what I mean? Like, I just I like it being there. You'll absorb it. If you want it, it's yours. When you realize that, that seems like the best time to me to make a change, like it's not going to help if I sit down and tell you, Hey, you probably shouldn't eat cupcakes every day. If I said that, people would think I was a bore and terrible, and they wouldn't listen. But if you listen to this podcast, there is an underlying message in it somewhere that you should eat better. But I've never once said it out loud, and that's kind of how I think about this whole thing. But also to say that I think about it consciously

Speaker 2 54:38
is not accurate,

Scott Benner 54:43
and so I don't really know how to explain it. And so often I don't even know what it is I'm doing. I'm just doing it. And then once in a while, Isabelle reminds me, or my friend texts me or something, and tells me, I can't believe what you accomplished this week. And you know, on Tuesday's show, and by the way. I while they're saying that, I don't even know what the hell they're talking about. So it's a really weird position to ban to not be able to explain yourself completely.

Speaker 2 55:08
But I guess maybe here we are. So

Scott Benner 55:11
I appreciate that you liked it and that it helped you. That means a lot to me.

Fran 55:16
Yeah, it really did good. I'm glad, and it will continue helping. I hope so. I'm gonna have to listen to tomorrow's episode immediately, yes,

Scott Benner 55:22
to find out about vision AI and and I would love to tell you what's and being sincere about this, I would love to tell you what's on my whiteboard. I was gonna ask people will rip me off if I say it on the podcast. So I can't do it. I learned that years ago, where I'd say something and then I'd wake up and someone else would be doing it on a website or a podcast, and I'd be like, well, that's a very unique idea. Where'd they get that idea from? If you hear me mentioned on the podcast, it's because I already have it recorded, and I know I'm maybe

Fran 55:54
that's where I'm going wrong. Maybe all my ideas are just getting stolen, and that's why, yeah, Henry Ford,

Scott Benner 56:05
my God, I love that you dreamt up the I really do love that you jumped up the insulin pump.

Fran 56:09
Yeah, should have, should have looked into it, yeah. Definitely

Scott Benner 56:13
could have, like, Googled it. It would have been quicker. Yeah. Is there a device that helps you put insulin in without a needle? And you would have been like, Oh, my God, there it is. Is that the Autism?

Fran 56:24
I don't know. I feel like it's, it's so intertangled with my personality in general that it's quite hard to know what's autism and what's just like, something that I'm quite good at, or something that I'm not very good at, what really, yeah, because you, you're like, This

Scott Benner 56:40
is a good idea. You believed in yourself, and you kind of went down. Kind of went down the rabbit hole with it. I must have no self esteem, which people are probably laughing about now, after I just said a bunch of nice stuff about myself, but because I if I had that thought, I would immediately think, if I thought it, then somebody else has already thought it. It's interesting. I doubt myself constantly like that. I

Fran 56:59
guess I probably did think that. And then, because I hadn't heard about it from the doctors, maybe I just kind of assumed that it couldn't be done yet, or been tried and didn't work very well, or something like that. I guess I didn't really think about it in that much detail. No, I

Scott Benner 57:16
think it's fast. I really do find that whole like aspect of the conversation fascinating, because I would have been like, Oh, if you thought of it, somebody else has already thought of it before. I definitely had that problem growing up. Like, if I was good at something, I just assumed everybody must be good at it, because there'd be no way I'd be good at something that somebody else wasn't, but that might be from being brought up poorly. Did you have good parents? Yeah, yeah.

Fran 57:39
They handled all the autism stuff like really well, especially considering that they weren't given any actual advice about it. They did make me go on airplanes quite a lot, but they put up with the constant, you know, 12 hours of crying very well. And my mum's catchphrase was, normal is boring, which is probably become like, a foundational part of my psyche, and it's kind of how I went through life, not feeling kind of crap about myself, I think, yeah,

Scott Benner 58:10
I was gonna say you seem to have an incredibly cheery outlook. Is that accurate?

Unknown Speaker 58:15
Yeah, I think so.

Scott Benner 58:16
I mean, you come off that way. So yeah, yeah. Like, I haven't heard one part of I have diabetes or this or that, and it's holding me down, or I'm upset, like you have anxiety, but the anxiety seems generalized, not about specifically about your diabetes or about anything else. And you don't, I haven't, I haven't heard you lament anything at all.

Fran 58:42
Well, if I was going to lament something, it would be the fact that I am tired all the time, and that has been true pretty much my whole life. And haven't been able to figure out. Why

Scott Benner 58:51
did you have your thyroid checked? Yeah, it's

Fran 58:55
been in range, even mostly within what you would call range, right? But weirdly, it's changed a lot within that range over the last four years. How? So it was not point eight, not point nine, 2.5 and then 1.3 I don't know if that's normal for it to jump around like that.

Scott Benner 59:15
Have they ever imaged your thyroid to see if you have nodules or anything like that, or done antibody testing.

Fran 59:21
They haven't imaged my thyroid. I think they did antibody testing for type one,

Scott Benner 59:27
but not for the thyroid.

Fran 59:28
Nothing for thyroid. Well, listen,

Scott Benner 59:31
that's a that. That's a road to look down. What about um, do you have very heavy periods? Could you have low iron?

Fran 59:38
I don't have any. Actually, the the pill I'm on just makes them not happen, which is glorious. No kidding,

Scott Benner 59:44
fantastic. I'm taking a pill, basically a shot that made me thin, and that's fantastic, too.

Fran 59:51
I was tempted by that too. Oh, it's lovely.

Scott Benner 59:53
Where do you see if you do it, where do you see what that does to your insulin needs, seriously? Well, they won't

Fran 59:57
let me have it. My BMI is not. Really when they are high enough. I'm just, I'm just frustrated that I've got, like, a lot of fat on my stomach, which never existed before, diabetes. And then recently, I was told that it was all like, lipo, hypertrophy, and the exercise and dieting wouldn't make it go away. So that's the thing. What's

Scott Benner 1:00:16
your Do you want to tell me your BMI and does it change? And

Fran 1:00:20
it's like 22 or something. I think it's like almost perfectly on the normal, slightly above maybe, right?

Scott Benner 1:00:25
Well, I'll tell you. Do you think you have insulin resistance issues or no? So

Fran 1:00:31
I definitely do think I did. I for most of that 10 years where I was on pence, it felt like there was no amount of pre bolus that was enough, because it wasn't so much about the speed that the insulin started happening. It was more that it was the peak was too wide for the food. The food would dissolve incredibly quickly in a really sort of narrow peak. The insulin would be a really wide peak. So I'd get a spike in blood sugar, whatever I did. And sometime around about when I got onto the dash, I started asking about Metformin, and I actually, I managed to persuade the NHS to give me Metformin, because I was borderline for PCOS, so I didn't have like, the ultrasound was negative, the blood test was sort of kind of borderline, and symptoms wise, I managed to persuade them that that was a potential positive. So I said, You know what, why don't we try and metformin? Because that's what one does for PCOS. And hey, maybe it'll help with the diabetes. And now, because it's clearly helping with the diabetes, that letting me keep it.

Scott Benner 1:01:40
Did it help with the PCOS? No particular

Fran 1:01:43
difference, as far as I can tell. And as I say, it's, it's only borderline as to whether I even have that. It was just a good way of persuading,

Scott Benner 1:01:53
well, at the moment in America, they're not, they're not allowing glps for anything more than they allow them for. But, I mean, we got Arden one for insulin resistance. It's working astonishingly well. We are adjusting her dose right now because she lost more weight than you know, anybody would have like, liked or guessed. We're trying to find an adjustment spot where the GLP is impacting her blood sugars positively, but allowing her to eat a little more. And we also don't know if she can't eat or if she just got to that point where she was in college. Biggest problem was, is that we started her on a GLP right before she left for school, and so she was gone for six months, and we couldn't really see her, you know what I mean? Like, she's like, my clothes don't fit the same. And we're like, you know, looking at her on FaceTime, we're like, yeah, it looks like you're losing weight and everything. But she lost more than we wanted her to, like, we didn't want her to lose any. And she lost more than we would have wanted her to, I guess is what I should say. But her blood sugars are, like, legit. You know what I mean? Like, fantastic. And like her, high excursions are near, you know, nothingness. There's no lows that you know that are like, frequent, nothing you could point to. So it's all really wonderful. She's using much less insulin. PCOS symptoms are really being like, impacted nicely. There's no, at this moment, scientific study that says that glps work on PCOS symptoms like so you can't just walk into a doctor and say, Hey, I have PCOS, and I hear glps really might help with that. Can I give it a shot? And they're going to say, well, it's not covered for that. And most doctors wouldn't even write you a prescription for it, for that, yeah, but if you had type one, then you could probably see the insulin resistance, and then you can kind of couple them together, but still, insurance here doesn't cover glps for insulin resistance, unless you have type two right now. But I think studies are coming. As a matter of fact, I know of one. I think we'll get to it, but it's probably going to take a bit of time,

Fran 1:03:54
yeah, which is a shame. And I guess the thing is, like, the only place I want to lose any fat is on my stomach. The rest of me, I'm like, Yeah, that'll do. That's fine. And I feel like that's not really what they're for. They're more of a kind of general fat loss, weight loss kind of thing. And you know, if diet and exercise doesn't get rid of lipo hypertrophy, then it feels like GLP wouldn't either, because it would be the same mechanism, but just more efficient? Yes. I mean,

Scott Benner 1:04:22
in a magical world where you know you can get whatever your doctor gives you, and it's not about insurance or coverage or anything like that, I would think for you, if it was valuable, and I don't know that it would be, if it was valuable, it would be more about insulin resistance, PCOS, symptoms, is where you'd want the value. Yeah. And then if you lost some belly fat, then good. You know what I mean? It can't make you lose more weight than you have. That's one way to look at it. But you also don't want to be super in shape and your ass, your legs, your arms and your bellies just like round

Fran 1:04:55
Well, now let's be fair, super in shape is not it's not a phrase that I would use for myself. I. But, like, mostly just because I'm not a big fan of the exercise, but why

Scott Benner 1:05:04
don't you add some sit ups into your dancing? Add some sit ups into your dancing. Yeah,

Fran 1:05:09
you'd think that would be easy. No,

Scott Benner 1:05:13
like, it was so artistic. But in the middle, it was in the middle, she started doing aerobics. It's very strange. Fran, have we not said anything that we should? Have we missed anything?

Fran 1:05:24
I guess I was going to ask you about AAPs, because with OmniPod five, it feels like it's sort of broadly thinking of flattish basal profile is the starting point, right? Because all it does is look at your daily insulin and kind of like spread some out over the day. And because my basal profile seems to be so weird, it feels like its default is probably a bit too much insulin at night and not enough during the day, whereas it feels like if it was sort of looking at my basal profile and saying, Okay, I already know she needs less at night and more in the day. Then it would be more able to remove some insulin to prevent a Hypo at night, and it just might be a bit more effective. And I'm wondering if Android APS would be worth looking into for something like that. Well,

Scott Benner 1:06:21
I mean, you're gonna have more adjust and Iaps, but you're gonna have, I mean, in any of the DIYs, whether it's loop or that, you're gonna have more ability to make changes like so you can go into loop as an example, or Iaps, and set your basal much lower overnight the expectations for what you need. You can change your insulin sensitivity hour by hour if you want to those kinds of things. And so you could make impacts there that I think were more fine tuned than you could with a retail system. But I mean to say that Arden's never had a low overnight isn't true either. You know what I mean, like, so, you know, like, we had dinner last night. Arden went out. Her blood sugar was, like, legitimately fantastic. And then around, like, 1am that when it was I'm looking right now, yeah, she was riding, like, 10 o'clock last night, 9783 8575 then all of a sudden, like it just dropped into the into, like the 60, and she had to adjust. She had to give herself insulin, or, excuse me, carbs and like, that was fine. And then this morning, while sleeping at 6:30am her blood sugar got into the mid 60s for a half a second, but the algorithm pulled it out. Not a lot of lows, but they still happen, and they're not like, I shouldn't say never, but generally speaking, they're not tumbling, crashing. Oh my god. We have to stop this with four juice boxes and, you know, like that kind of thing. Yeah, you're gonna get low on everything. I think at some point. I don't think that's true. You know, completely avoidable. But you know, any of the algorithms that you can do do it yourself are going to be much more user friendly. As far as adjustments go, you just have to decide how much you want to be involved in it,

Fran 1:08:26
yeah, that is always, always going to be a question. Because, I guess the other thing is, you can set like, like profiles on, on the DIYs, right? So I could be like, This is my profile for when I'm ill. And then if I'm getting a cold, I can switch to that. It'll be more aggressive, but then I can switch back when I'm feeling better, whereas with OmniPod, it's got to slowly figure out that I'm ill, adjust for that, and then figure out that I'm not ill anymore, and adjust for that. So you get the highs at the start of being ill, but you get the lows start of being healthy again. And just being able to give it that extra bit of information might just sort of help it adjust more quickly. I guess

Scott Benner 1:09:02
I think that's a completely valid if it's a criticism, but, but, you know, it's a completely valid criticism of OmniPod five. So, yeah, that it doesn't, it's not adjusting. Nothing adjusts on a dime. But that to your point, that other stuff, you can go in and say, Hey, not so much today. You know what I mean? Like, we did it like, Arden's home, you know, just from school for the last couple of days, and her first or second night, I said to her, like, you knock your algorithm back like, by like. So basically, we have like settings. I have a 90 and an 80 like preset in her IEPs, it basically just turns everything down to 80% or everything down to 90% we just buy a push of a button, and I realized that she's gonna get home after all the like stress and anxiety and rushing around at the end of her like her finals and all these overnight. Was pulling and probably not eating well and etc. And so as soon as she got home and she relaxed, I was pretty sure she was gonna get low. So like, night one, I was like, put that thing to 80 before you go to bed. And we've used 80 overnight a couple of times, then 90, and now we're getting back 200% again. Like, because the algorithm is going to the way I have Iaps set up, it's using the dynamic settings. So all the settings, basal, insulin to car ratio, insulin sensitivity, it is dynamically changing them as her needs change. So I basically, yeah. So I basically said, like, look, I think you have less need coming up over these next couple nights. Let's tell it 80% 80% 90% let it see that, and then go head back and tell it, you know, go back to 100% now and then it can. It kind of makes the adjustments smoother, and that's how I've been using it for that. And that is not something you're going to do on OmniPod five. That sounds pretty tempting.

Fran 1:10:59
Yeah. Might have to start doing doing objectives in the background. Well,

Scott Benner 1:11:03
I think after you get your Google Doc all filled up with your notes on it, you'll figure out if you want to do it or not. And then, you know, from there you're building apps, you're also fall into other situations, which is, and I don't know enough about this to speak completely, with a lot of Clarion of statements, I guess. But you know, it is a do it yourself thing, which means that there's some people online who are working on it, and let me be a little obtuse, those people don't always get along with each other, and sometimes some of them do things that aren't great, and, you know, make changes to algorithms, and don't go through the Testing like they should, and just throw them out into the world. And sometimes people over test things and anywhere in between, and you know, then you see a branch break off because these people didn't get along with that person. And like, that's a thing that's happening. Like, you know, OmniPod is never going to be. Like, here's six different versions of OmniPod, five based on the feelings of six different people who work in the office, and so, like, you know there, there is stability with that. That is attractive. You know what I mean. So I don't know. There's a lot to think about, in my opinion. Oh,

Fran 1:12:11
also, while I've got you, if you could just let OmniPod know that being on automated mode but still being able to do extended bonuses would be incredibly helpful. That would be just lovely. I

Scott Benner 1:12:21
think you just lovely. I

Fran 1:12:22
think you just let them, because I have to split, but I have to split almost all my boluses now, which is definitely better, right? Because there is now something I can do that makes the peaks match up a bit better, but it means that I have to do a lot of thinking and remembering and coming back to it later and stuff

Scott Benner 1:12:39
like that. So being able to split a bolus in OmniPod five would be a big deal for you.

Fran 1:12:45
Yeah, split and or extend, I guess, yeah,

Scott Benner 1:12:48
it is a weird. Well, it's not weird that they removed it, but I see, I mean, I see what they're going for, if that makes sense, you know, like, I definitely get what they're going for. They want, they want a thing that you don't have to think about like that you're not very involved in. And I think that that for a lot of, a great many people, I think that's fantastic, but for you who you wants to make an adjustment, leaves it a little short for you, yeah, because

Fran 1:13:15
it means now that I basically, for most meals, I can't put all the insulin up front, because I'll have a low while I'm eating. Yeah, yeah. No, I

Scott Benner 1:13:24
understand, I mean, I understand why,

Fran 1:13:25
which actually is more thinking than if they just let me do it.

Scott Benner 1:13:29
Let me do it myself. All right. Well, you heard her omnipodge, for the love of God, let him have extended bolus as an automated mode. Yay. I took care of it for you. I I've said this a couple of times in the last couple of days, because people keep asking me for things I'm like, I am not nearly as powerful as you think I am, but I certainly will mention it

Fran 1:13:49
to somebody you know more people from OmniPod that I do, so I'm counting that as a win. They are lovely people

Scott Benner 1:13:53
too. Actually, 100% true. Okay. Well, thank you very much for doing this with me. I really do appreciate it. Thank you. Would you? Would you hold on one second for me? Thanks.

The episode you just enjoyed was sponsored by Medtronic diabetes. Learn more about hyperglycemia and what you can do about it at Medtronic diabetes.com/hyper a huge thanks to a long time sponsor, ever since 365 learn more and get started today at Eversense cgm.com/juicebox. One year, one CGM. Ever since 365 Are you starting to see patterns, but you can't quite make sense of them. You're like, Oh, if I bolus here, this happens, but I don't know what to do. Should I put in a little less, a little more? If you're starting to have those thoughts, if you're starting to think this isn't going the way the doctor said it would, I think I see something here, but I can't be sure. Once you're having those thoughts, you're ready for the diabetes Pro Tip series from the juicebox podcast. Podcast. It begins at Episode 1000 you can also find it at juicebox podcast.com up in the menu, and you can find a list in the private Facebook group. Just check right under the featured tab at the top, it'll show you lists of a ton of stuff, including the Pro Tip series, which runs from episode 1000 to 1025 Hey, you listened all the way to the end. You might want to know more about the juicebox podcast. If you do go to juicebox podcast.com scroll down to the bottom and subscribe to the juicebox podcast newsletter. Each week, you'll get a rundown of the shows from the past week, just in case you missed something and you think, Oh, I would have loved that now I know. Thank you so much for listening. I'll be back soon with another episode of The juicebox podcast. Hey, what's up, everybody? If you've noticed that the podcast sounds better and you're thinking like, how does that happen? What you're hearing is Rob at wrong way recording, doing his magic to these files. So if you want him to do his magic to you, wrongwayrecording.com, you got a podcast. You want somebody to edit it. You want rob you.