Scott Benner 7/14/23 Scott Benner 7/14/23

#953 Weight Loss Diary: Four

Scott is taking Wegovy for weight loss. This is diary number four.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio - Radio Public, Amazon Alexa or wherever they get audio.

+ Click for EPISODE TRANSCRIPT

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

Scott Benner 0:00
Hello friends and welcome to episode 953 of the Juicebox Podcast

Hey everybody, I'm back with my next week govi diary. This one gets you through the 1.7 milligrams, all four pens, and you'll hear what happened to me along the way. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. Today I interviewed a girl who has type one diabetes and is taking ozempic. That's very interesting. And we'll get that one out as soon as we can for you. All you we go V diary fans might really love that one. But for now, if you're looking to save, you can save with my link, drink a G one.com forward slash juice box you'll get a free year's supply of vitamin D and five free travel packs when you start drinking at one with my link and you can save 10% On your first month of therapy@betterhelp.com forward slash juicebox get yourself some help get better help. This episode of The Juicebox Podcast is sponsored by cozy Earth. Cozy Earth makes a lot of my favorite things. I'm wearing a hoodie right now from cozy earth that I can't describe you how soft and just comfortable it is. I'm never hot in it. I've never cold it. It feels like it feels like someone made it just for me. Cozy earth.com use the offer code juicebox at checkout to save 35% on your entire order. Everything you put in $1,000 worth of stuff you save 35% You put in $100 worth of stuff you save 35% You save 35% with the offer code juicebox at cozy earth.com Hey everybody, its Scott. I'm back. Tuesday, June 20. I'm about to do my first injection of 1.7

Sorry

my mom isn't doing well. And I had to fly cross country unexpectedly the other day and didn't have any time to prepare. I you know food, that kind of stuff. Just bought tickets left the next morning. I got stuck in an airport for seven hours because of a mechanical issue and weather. And it was tougher than usual because there's just not a lot of food that you know, I was inclined to say that there's not a lot of food that I can eat. But I don't that's not what I mean. There's not a lot of food that I want to eat at this point. I am I am seeing a connection between things that I would have eaten in the past even though it wasn't overeating them that I just look at now and think that's not worth getting in the way of what's happening here for me. And that might be the best way to put it. I am this morning 22nd This morning Yeah, this morning I am 23.4 pounds lighter than I was when this all began on March 28. That's the day I did my first injection and made the first the first diary entry. So I am 23.4 pounds lighter. My BMI is 3.5 points lower. My body fat. Wow. Almost six points lower. I hydration like my body water measure continues to go up started at 47 Back then in March. It's 50.8 now. I mean there's a lot more here. I'll go over them with you in a couple of weeks but my fat free bodyweight is dry. hoping my subcutaneous fat is dropping, that's gone from 30 to 20. So 25.7 from 30 to 25.7. This role fat is staying pretty much the same. Muscle mass is holding. bone mass is holding protein holding. My metabolic age has not fallen yet. Alright, I'm trying. I'm going to be 52. And my metabolic age is still going to be 57. But it started at 58. And that's not nothing. Anyway, back to the food. I found myself in a restaurant one time. And I looked at the menu. And I thought, I don't see anything here. I mean, genuinely, I don't see anything on this menu. That a person wanting to stay in a caloric deficit and trying to lose weight and feel better and etc, would buy. I ended up getting a side salad. The Greens weren't terrific. I pick through them the best I could. And I just thought, well, I'll eat later when I have better access to food. I was able to do that because of course the week OB keeps me from feeling hungry, both like physically in my stomach and I guess mentally in my head. So that's a really big deal. I haven't been Dizzy like you know, I used to get like, Oh, I forgot to eat. I've been dizzy. That hasn't happened. I know how to stay in front of that now. And as soon as I got back from the trip, I went right back to my breakfast couple of eggs in a wrap. I put a couple shrimp with it this morning. I think the other day I put something else with it. lunch I had more of the shrimp with some rice. Had a nice turkey sandwich. Rye bread. Real turkey. Not a lot on it after that. In the airport in Chicago. I had chicken noodle soup that was very good. And a half a turkey sandwich. There was too much bread. There was too much cheese. I just ate what I wanted. Very comfortable. And my thinking about food is shifting, like 1,000,000% Anyway, I am moving up now to 1.7 milligrams. This is the first injection of 1.7. And I guess I'll do it now. And then if I don't have anything else to say I'll see you next week. All right, here we go. That was the cap. This is me standing up. And here looks good.

Okay, what else? Oh, the full feeling the actual physical full feeling in the I'm gonna say for a month or so. There were times when I would eat. And it almost I know this wasn't the case. Right? But it felt like the food was like stopping halfway down. You're like, you know, your esophagus. And it's not the case it was the feeling you had that's been better. Better meaning I don't feel it as often. Reflux that I had earlier on, I can't decide if it's, well, no, what you know what I can decide. I was gonna say that I'm not sure if I'm just eating earlier, and therefore, in the day and therefore I'm not experiencing it at night, but I don't think so. I think my body's kind of getting accustomed to the, to the week. Ovie not feeling that as often. I mean, as far as like thinking about food, that doesn't really happen, but it hasn't stopped me from having like, treat kind of stuff once in a while. I had a little chocolate ice cream yesterday. Not a lot, a tiny bit. I've had a couple of gummy bears. They were very good the other day, but I didn't eat like, you know, I didn't snack on them. I had like, I was like, oh, gummy bear. I took a couple of them. And that was it. Still I'm getting my sweet fixes from like bananas and oranges. I do have chocolate like a good quality chocolate in the form of like these little chips, and I'll have a couple once in a while. I had a cookie the other day was good. A small one. It was homemade, but it was good. But not like amazing. I will say that. Any of like the, you know, like the, I don't know sunshine and rainbows feeling that you might get from food. It's not like that anymore. I can't tell if that's the medication or just my excitement about losing weight and feeling better. And that's the other thing too. Bye My face is looking different. My stomach and my, you know, it's very, it's on a very similar plane of existence as my chest, which is pretty exciting. I can see my body changing. My body is doing a good job of not hanging, you know what I mean? Like it's coming together. It's been easier on my knees and my feet, you know, losing weight. I definitely feel better overall. It's been great so far. So, anyway, I'm gonna go V, and I'll be back next week

I'm gonna sound like a guy with a podcast for a second, which I try not to. But there's no way around it. Cozy Earth is a sponsor of the podcast. They've been sponsoring the show all year. And they just thank you cozy Earth bought ads for the rest of the year, which means you guys must be liking cozy Earth as well. So for that, let me just first say thank you to all of you listening. Now. What is cozy earth? Well, they sell bedding, bath, sleep, clothing, soft things. What's the best way I can say comfortable things. I am using cozy Earth sheets on my bed. They're made with viscose bamboo. And they are incredibly soft and comfortable. They wash well, they hold up great. They are a joy to climb into. I'm just going to tell you cozy Earth sent me those sheets when I started doing the ads so that I could try honestly they sent them to me before I started doing the ads. I said I gotta sleep on the sheets. Before I talked about the sheets. They sent me the sheets, it was a no brainer to say yes to those ads. Not because I got a free pair of sheets. Because I've now bought things from cozy Earth with my own personal money. I've bought more pillowcases. I've bought towels I've bought a lot and the towels. Alright, you want to hear about my towels. It's a crazy thing to say. I have cozy Earth waffle bath towels. On one side they have this kind of waffle pattern I use that when I first got the shower kind of absorbs a lot of the water you know I'm saying and then I flip it around to the super soft side. And I do the rest of the town that way my bits and pieces love the super soft side. I think it's possible your bits and pieces would too cozy earth.com. Now at checkout, you use the offer code juicebox to save 35% off of your entire order. And a little birdie told me that that number is gonna go up very soon from 35% to a larger percentage. Stop by and check it out. See if that's happened yet. Cozy earth.com All right. I've talked about my bath towels. They're amazing. I've talked about my sweatshirt, the pullover. swear to you I love it. But the joggers might be my absolute favorites. And Arden's wearing a pair of lounge pants now that she says are terrific. She loves the way they look on her how they feel how they are when she's sleeping with them. Listen, there's so much over there. For ladies, for men for bathing, for sleeping. Go check it out on you. Cozy earth.com use the offer code juice box at checkout. And I'm gonna take this little bit at the end here to say thank you to cozy Earth. And thank you to everyone listening. At the beginning of the year cozier took a shot with me bought some ads, and you guys, you went and checked them out and made some purchases. And now they're here for the rest of the year supporting the podcast. So I'm just gonna say it very plainly when you use my offer code juice box at checkout. The people at cozy Earth buy more ads, and you get more content. And all kinds of great things happen. If you love being comfortable. If you love pampering yourself, if you love your bits and pieces smiling back at you. That's a weird thought. Don't think about that. Go to cozy earth.com buy some stuff. use the offer code juice box at checkout. When you use the links in the show notes of your podcast player for all the other advertisers. You're also supporting the podcast. Thank you so much. Let's get back to my week. Ovie diary

Hey kids, I'm back. It's June 27. And I've had my first odd week on we go we back on the 20th I weighed 210 pounds. And yeah, on the 20th next day, I went Get a little more 210.6. Now the 20th was when I injected the first dose of 1.7 milligrams. But okay, next day two Oh 9.6 And I got back at two Oh, 9.2 The following day, I was like this is happening 1.7 is going to be the way to go. But then two Oh 8.4 I know, right? It's happening. I'm doing it. I'm gonna be under 200 No time. Next day two or 9.4 Next day 210. And today, I'm 210. So what happened? Did Scott find a way to eat? No, I think the larger dose might have brought back some of the earlier side effects. So when you first started, when I first started using the medication, you have this sort of like, overly full feeling. And almost, I don't know one other way to explain it other than it feels like if your stomach and the tube between your stomach and your mouth was all one piece, it feels like the food is like in the tube. It's not like a horrible feeling. For me, it's not a great feeling. But it's a very full feeling. Almost like a little burpee enemy. But bigger problem this week was I missed the day of the magnesium oxide, which seemed to lead to some slowing of the process, you understand, I'm saying there was no poopy. And I'm constipated the last couple of days. So I don't think that the weight is indicative of a weight gain. I think it's indicative of the constipation. And I am just going to trust the process and assume that my body will adjust to the 1.7. And keep going. Anyway, you should have seen me to await I was super excited for the number that I thought oh, I'm going to be under 200 soon. But had a I've had two interesting experiences this week that I'll share with you before I inject this. They're brief. The first one was I was with a bunch of people who I don't think completely understood how this all works. And they were asking questions, and I was answering the questions. And the person says to me, but I mean, you haven't used medicine to do it. I was like, Yeah, I don't care. I'm like, I'm like, what? What's your point? Like, I'm 20 I mean, what's the, um, 210 today, so 23rd I am 23 and a half pounds lighter than I was when I started this. And it's a significant improvement for my life. Not just like how I look, right, which is the other thing I want to tell you about, but for just how I feel I feel so much better. And I'm not, I don't know, I don't feel like I'm a slave to like food I can eat when I want to. I don't have big portions anymore. I don't have that overly like a feeling like, like I feel full because of the medication. But I don't feel like I overeat. I haven't felt like that a long time. Anyway, point is, I if people don't understand, I'm happy to explain it through them. But I'm not going to sit there and apologize to them because I couldn't figure out a way to do this on my own. Like I'm 51 almost 52 years old. This is my last shot. Like you know, I don't know a lot of people in their 60s who are losing weight like through diet and exercise you know? So anyway excuse me while I clear my throat I'm gonna get a drink so anyway, I was happy to share that with them. I don't know if they understood or not. And I also heard a lot of like, what about your liver? Like, it was the weirdest thing like I guess at some point somebody's medicine hurt their liver in their life and so they just assumed all medications like can't use medicine and or hurt your liver and I'm like, Okay, it's injected not metab i know i We didn't want to go through it with them because it didn't seem like it was gonna go anywhere. But it was an interesting response nonetheless by the way, all from people who could use to learn to lose 25 pounds so and that's not me being judgey about them I'm telling you for health reasons these people all could stand to lose some weight. All right, now the last thing I want to tell you about before I inject this is the how I look part that's been my least focus the least of my focus so far. Like I definitely wanted to be healthier. I don't want to have a heart attack. I want to feel better. All those things. But I the last thing I thought it was like how do I look? I can tell you I dropped pant size like a waist size two sizes, which is been pretty crazy and the ones that I just bought at the new size. Luckily it's summer. I'm just getting shorts But they're starting to feel a little slippy, like they might fall. You know, I have a classic no but no hips guys like thing. So I'm gonna have to get a tighter one I think. But, and there's a massive difference in just like, my body size like the bulk of the mass of my body, right? I shouldn't have said massive because then I had to say mass again. But my around my chest around my background, my sides, my midsection, they all are smaller. I am shrinking. Like there's no doubt about that. But the excitement of it has gone now like, you know, like 23 pounds, like, Wow, it's amazing. Like the numbers seemed exciting. But then I look in the mirror and I go, Oh, yeah, I'm not done. Like I don't magically look better. It's, I look smaller. So anyway, that was a bit of a thing. Because I think in my mind, the visual and the number were tied together. And as the numbers falling, like don't get me wrong, like I'm getting smaller, but and my body is doing a good job of compensating like shrinking up. You know, that's that's happening pretty well. But obviously, there's going to be a lot of exercise in the future to tighten things. But I don't know like, I guess it was more visual like for the first time for me, it was visual. I looked in the mirror and I thought I don't look magically better. I don't know what I expected. But it finally struck me like, wherever I think I'm headed. I'm not there yet. Anyway, that was pretty much all my thoughts for this week. Second injection we go V 1.7 milligrams cap off. Hopefully I'll go v to the bathroom soon to do you think they named it that because of like that? Like it here we go. Here. It's gotta be here we go. Right here we go. Losing weight. Here we go. Feeling better. Blah, blah, blah. It's got to be with a little less belly to inject into. Here we go.

Hmm, little bit of pressure there for the 1.7 milligrams under the skin. Nothing bad. I wouldn't call it a pinch. A little pressure. All right. People, Scotty out talk to you next week. Hopefully I'll have a weight loss to share with you. I don't want to keep gaining weight, because if I do, that'll mean. It'll mean I have a giant bag of poo inside of me. That's not good. We don't want that. Alright, say, Hey, what's up everybody? It's Scott on July 4 2023. This is going to be a short one because I have to go to a picnic. It's Tuesday. So I'm injecting my third go of 1.7 milligrams of weego V. Here's what's going to happen. I'm going to inject I'll tell you a little bit about this week. I fire off an email to my physician and they send a refill for this step up to the pharmacy. Okay, I weighed 207.4 pounds. Yay. More importantly, this week was full of family visits. I don't know. I don't know how much I said on this these episodes, but my mom passed away recently. And so there are people here and we were at restaurants, you know having get togethers, things like that. My mom basically outlived everybody except her best friend who was on another coast so she couldn't make it. So it was just you know, get togethers, food, home cook things, I was no trouble to eat. You know, well during those events, even in restaurants, I did bake cookies for the little kids that were here and I had some cookies and still I lost weight to point you know, I lost weight I'm 207.4 pounds now today. honestly don't believe that without modern medicine. I would have gotten through the last two and a half weeks and weighed less. Like I don't think I would have weighed the same if this would have happened before we go V I'm sure I would have gained 10 pounds in the last two and a half weeks just from airplanes and crappy food and bad restaurants and stuff like that. So miracle modern medicine, right 207.4 pounds today I feel terrific. does not seem to be any end in sight for this which is fantastic. I did not stress eat. I did have some cookies. Because we bake some cookies for the kids and everything. And I didn't gain weight. I lost weight and I didn't eat them crazy. I had one I was like, that was good. And then I put it down. Last night, I picked one up, I took a bite of it. And I thought I don't want this, and I put it down. I have never in my life. Done that. That's pretty amazing. So, you know, while we're speaking about the miracles of modern medicine, my mom lived to just about 81 years old, Mr. 81st birthday by maybe a month and a half. She had a pacemaker for the last 20 years, she had was in heart failure, have been fighting off type two diabetes for five or six years, you know, had a major cancer problem, a huge surgery. In the end, her cancer did come back. But again, without modern medicine, I don't think my mom gets out of her 60s, and she misses my son's entire life and my daughter's entire life. She has other grandchildren, other weddings that she got to go to both my brother's weddings and all the conversations and the things she did in her private life that I don't know about. They're all due to advancements in, in modern medicine. So I'm gonna take advantage of this one and say, here we go v. And then I'll talk to you when I get back. Oh, that was a bummer. I lost weight, guys. That's what that's the takeaway. I lost weight, I feel better. And I have a perspective on this. That is long term, very macro. You know, I see this as a process. And it is not a process that I have become. I've never become frustrated with it. Like before, if like you lose weight, like, Oh, I lost eight pounds, you think I'll lose eight pounds again next week, then it doesn't happen? Well, this isn't gonna work. And you just kind of give it away. But with this little line on the scale, that scale app, it just keeps going down like a real slow ski slope. And I'm good to be on this ride. Thank you so much for listening. I might button this one up. I don't know. Actually, I'll hold on to it for one more my last injection of 1.7. And then I'll make this an episode and send it out to you. Have a good day. Oh, crap. I just injected my 1.7 but I bumped the button. So I didn't record so anyway. Click Click. That didn't hurt. Okay, everybody, I'm back. It is July 11. Sorry, my water bottle. Crunchy. It's July 11. Tomorrow is my 52nd birthday. So spending it with my kids and my wife taking a day off from I was gonna say taking a day off from making the podcast. But that's not true isn't let me say no, I'm gonna record early in the morning. And then I'm gonna spend the day with my kids and my wife. But first, I want to tell you about this week with big O V, which was weird. It was a weird week with we go V because I didn't lose as much weight as I have been, which is fine. But my weight was up and down. And it took me a couple of days to figure out what was going on. But I finally did. And I want to tell you how I got ahead of it. So up until now, I've just been going with my regular daily supplements. I drink athletic greens, as you know. But then I take magnesium oxide to make the poopy move. I take what just happened with the computer. My computer just after we're sorry, computers fine. Sorry about that. I make. Let's see, I take a probiotic and extra probiotic. I take two magnesium oxides a day. Vitamin D. I take zinc. I take ashwagandha I'm trying right now. But the magnesium oxide is really the focus of this conversation because it keeps me regular. Well, I started getting nauseous on this 1.7 The third injection a 1.7. And I kind of couldn't figure it out. So I want to talk about nausea. I don't want to talk about consuming food. Those are my two thoughts for this. This little chunk here. Took me a couple of days to realize it's not nausea in the classic sense. It's it's nausea, like I haven't gone to the bathroom. Like it didn't hit me right away. But like two or three days went by and I was like, I don't remember using the bathroom. And I was like, oh, then my stomach started feeling funny. And at first I'm like, Oh, I'm nauseous from weego V. And then I realized I think I might just be nauseous because I'm eating and nothing's escaping. You know what I mean? So on day three, I was like, I'm going to take fiber like something needs to happen. But then I had this panic I was like what if I put fiber in there and nothing comes out still. So you have that kind of unknown like is the medication keeping me from going to the bathroom? And what if I keep putting more stuff And I don't want to be in pain. You know, right now I'm just uncomfortable. So I did finally decide to take fiber, but instead of going with my one that I used to use all the time, which I have a fair amount of around the house, because sometimes that can, I don't know if you have to get on a schedule with and I went with something a little easier on my system. It's another fiber we have in the house called Sun fiber. It's that's just the brand name. Anyway, I took that. And the next morning, a lot of law. Here we go V again. So all that was better. But why, you know, what was I noticing beyond the nausea? I was gaining weight, like every day that went by that? I didn't, you know, go, my weight was going up. So I was back on I measured What's the last time I told you my weight? The fourth right the Fourth of July? Because who doesn't record a what go via episode on the Fourth of July besides me. So on that day, I was two Oh 7.8. I held that again the next day. And then not going to the bathroom started. And then by the eighth of July, I was two Oh 9.2 Not crazy. To a seven to eight like a pound and a half almost. I don't think it was all poopy. You know what I mean? I also started noticing that as I wasn't being regular, my body started retaining fluid again, which was crazy interesting. Anyway, get in the fiber, the sun fiber. And I've had it now for two days. I didn't even get on the scale for those two days. I was just like, let me just see what happens. So last time I weighed myself was on the eighth two Oh, 9.2. Today's the 11th. I've had the fiber for two days. I was to await point four. I had to

ignore that at one point. I was two Oh 7.8. Because it really is it's just it's eight ounces. Like bright. Like, it's not a big deal. But it is initially you got to stop your brain from saying oh no, you gained weight this week, like you went up a pound or a half a pound or point eight ounces or whatever. It's just all ridiculous. The way I tend to think about it instead is was on a good path. Hit a speed bump, figured out the speed bump back on the path again, that's all like I don't care, very long term goals. For this whole process. I have in the past I would think about weight loss like very, in the now like I started doing this, you know, knock off some water weight, I lost five pounds this week, the next week, if he didn't lose five more pounds, like Oh, it doesn't work, you know, like going backwards again. With this. I'm not worried. I'm tracking now for you guys. But I don't care. Like I'm thinking about a year from now, a year from now I know how much I want to weigh, you know, two Oh 8.4. Today, down from let's not forget where I started like 233 something. It's amazing. It's been like four months. But I'm I keep looking at myself in the mirror, I can't exactly tell where my best weight is going to be. But I am getting to the point now where I want to incorporate more exercise. But I can't believe this is happening because I'm old, I guess. But apparently I chipped a tiny little bone off in my big toe on my right foot, like this little tiny free floating bone, I got an x ray. And every once in a while it settles in that joint between my two bones and my big toe and searing pain. So I can't move around too much. I have a an appointment with a surgeon and a couple of days so they can take it out so and get moving again. I mean between the knee last year and the toe and like every time I tried to exercise, being old, gets in the way body's broken. But anyway, that's still the goal. I think once I start adding exercise to this, I think the weight is going to start dropping pretty quickly. But for now, we go we still works exactly the same way. Not hungry, feel full. That's that. But I have learned because we've had a couple of events like a picnic or my my mom's you know, celebration with my family. That kind of stuff. My son came home, I can't eat. Now, like I'm learning that I could I could keep eating and overeat. I'd feel full but I could do it. And I was like, I'm not doing it. I want you to understand. But in the beginning I thought oh, that fulfilling means I can't eat anything. But now I realized that it's a mix of you don't feel hungry in your head. You don't feel hungry in your stomach. It doesn't mean you can't put the food in your stomach. So you have to make a conscious decision to eat reasonable portions because if you just like kind of shut your brain off for a second and like go back to where you were before I could end up eating more food. Sorry. I see that which has been valuable understand. Alright, anyway, so food pooping covered my topics. I am to 8.4 this morning, which means I have lost a total of let's see a lot of weight 25 pounds I've lost 25 pounds. It's pretty crazy, right? We haven't gone over the trends. So I'll do that very quickly to a weight point for this morning on the 11th Looks like my BMI 30.9 It's almost as low as it's ever been. Body fat 29.5 My hydrations a little down over the last couple days. I'm assuming that's because I think I was retaining water with the constipation and now it's coming out. Skeletal muscle is holding steady. BMR steady, fat free body weight. Gs 147.4. Does that mean I'm carrying? I can't mean I'm carrying 60 pounds of fat. Jesus, am I That's ridiculous. I don't think I should weigh 140 pounds by subcutaneous fat 25.5. This role fat was down at 13. But jump back to 14. Muscle mass is steady actually increasing a little that's excellent bone mass steady. Protein steady, metabolic age still 57 Okay, that's fine. I'm gonna button up this episode for you. I appreciate you guys listening to this. This was a tougher week. It was hard to see the weight go up. It's only the second time it's happened in four months. But still, you know, you almost get spoiled. You're like I'm on a roll. This is working. I'm gonna lose two more pounds this week, two more pounds, two more pounds, like you know, and then I was like, Oh, I gained two pounds the middle of the week. You know, could frighten you a little bit. But I am undeterred. I have my 1.7 my last one. And the next step up I've already received from the pharmacies next week. I'm already ready. It's in the fridge and waiting for me. You know how this works. Yep, hop off the camp. Find a place to stick it. Let's go belly side. Click

Click, it's in some magnetite injection 1.7 We go V. Done. I gotta tell you, whoever came up with this drug. You're a genius. And I appreciate it. I love that you guys are listening to this very cool. I appreciate you keeping up with what's going on. I have some other people in my life using these meds now, people I know going to be able to kind of expand their stories a little bit. I've got a type two using ozempic. In my brother, my wife is using we go V for weight loss as well as she's fighting with what we think is long COVID Which is really crazy. But she's right up to where I am like she I think she's right around the 25 pound mark as well. It's very cool. We're feeling better, we look better. And I think that's important. Now I just get my little toe fixed. I can hop back on my bike again and see how quickly we can't make this the rest of this lifelong collection of fat go away. Thanks so much for listening. I'll be back very soon with another episode of The Juicebox Podcast

I got two thoughts here one cozy Earth use the offer code juicebox at checkout cozy earth.com save right now 35% off your entire order and here's my last thought Novo Nordisk. What are you doing? Buy some ads on these we go V things. You're crazy. I'm loving your govi let me tell people about it. I'm saying, man here. I'm representing fat man getting skinny.

That's all I got. I'll talk to you guys soon. I really do appreciate when you listen. If you've got type one, type two diabetes, go check out the private Facebook group Juicebox Podcast type one diabetes

#952 Type 1 and Down Syndrome

Johanna's daughter has type 1 diabetes and Down Syndrome.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 952 of the Juicebox Podcast.

Today on the podcast I'll be speaking with a mom of a 12 year old with type one diabetes and Down syndrome. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. Or becoming bold with insulin a few quick things, join the Facebook group Juicebox Podcast type one diabetes to meet 40,000 other people who are living with diabetes. It's a private group. I think you're gonna love it. There's something there for everyone. Juicebox Podcast type one diabetes on Facebook doesn't matter what kind of diabetes you have. You're welcome in that group. Other quick stuff, save 35% off your entire order at cozy earth.com When you use the offer code juicebox get 10% off your first month of therapy@betterhelp.com forward slash juice box and to get five free travel packs and a year supply of vitamin D with your first order. Drink ag one.com forward slash juice box

this show is sponsored today by the glucagon that my daughter carries. G voc hypo penne Find out more at G voc glucagon.com. Forward slash juicebox.

Johanna 1:45
My name is Joanna. I have three daughters, my oldest of which is 12. And she is the one who has type one diabetic. And I live in Canada.

Scott Benner 1:56
Okay, your 12 year olds a T one just for context. How old are your other kids?

Johanna 2:01
They are eight so have eight year old identical twins. A 12 year old

Scott Benner 2:05
did that? Um I don't know. I don't know what phrasing I was just about to use. But my brain was like Don't say it that way. Was that from IVF or luck?

Johanna 2:18
We did have helped. So we did actually IUI and Clomid to get pregnant with the twins. But they are identical twins are spontaneous. And so it was a surprise. We actually were pregnant with triplets at the beginning. So it looks like the third one was fraternal, but we'll never know passed away and then ended up with identical twins. However, I'm an identical twin myself. So there's no real data about whether identical twins run in families or not. Usually it's fraternal twins. But it's certainly possible. And that's just the way it turned out in our family. I'm an identical twin and I have identical twins.

Scott Benner 3:00
My neighbors have two sets of fraternal twins. Wow, that's interesting. So they had babies twice and ended up with four kids, which is the way I think of it. But you for one discount? Exactly. Yes. Six more responsibility. Yeah. Okay. So we're here to talk about your 12 year old obviously, yes, we're not going to use her name. So I'm saying that out loud. So everybody knows we're talking around that a little bit and so that we remind each other of the same thing. So how do you want to how do you want to refer to her as P? Okay.

Johanna 3:37
So, P has Down syndrome. So she was diagnosed at birth with Down syndrome. And people down syndrome tend to have a lot of autoimmune conditions. So even though she's been really healthy throughout her whole life, she has sort of developed autoimmune conditions along the way. So at one years old, she developed alopecia. So her all her hair fell out, and it hasn't really ever grown back. At four, she developed hypothyroidism. And so we've been treating her with Synthroid since then. And then she developed diabetes in January of 2022.

Scott Benner 4:11
Oh, that's so recently. Hey, The Hypothyroidism is that Hashimotos.

Johanna 4:17
They've never called it Hashimotos. But it is autoimmune. So we, we did see an endocrinologist. They ran the autoimmune panel. They said, yes, it's autoimmune, but they've never actually called it pescados. So

Scott Benner 4:30
unless I'm wrong, that's Hashimotos. Okay, so hey, well Google it later. Okay, so but the diabetes came up. Oh my gosh, like not even 10 months ago.

Johanna 4:43
Yeah, so we I feel like the triggering event was we went to we had a big family gathering at Christmas. My nephew was sick, picked it up. And so she got quite sick with it. Nothing. I mean, she we managed her at home, but she was on She was sick for two weeks. And then shortly after that, she started drinking lots of water. And so I had known what the what drinking lots of water meant. I knew it was a risk factor for diabetes. And eventually it went on long enough that I thought I like I need to look into this. So I called the pediatrician. He said, Yeah, we'll order bloodwork. So we did blood work on a Friday. He called me at home at night, that night and and said, You need to go to the hospital. Her blood sugar's really high. So we packed up, went to the hospital, and then we were diagnosed like, that was a Friday night, on Saturday. With diabetes.

Scott Benner 5:40
Yeah, it's not a hard and fast rule. But if your doctor calls you at night to tell you something. Bad sign Yeah, prepare yourself. It's like we cannot wait till morning. Not not a good. Not a good sign at all. No.

Johanna 5:54
So they tested us, we walked right in into the hospital into an intake room. They tested her blood sugar right there. And it read high. So I didn't actually knew I didn't know what that meant. At the time. I was like, Oh, that's weird. It's high. I didn't know what meant it. So high can't read it. And so they ended up getting they did the bloodwork. Her blood sugar was 36. A diagnosis, which is 648. They did the conversion for you. Thank you. And her agency was 13.8. So chi, but she was not in DKA. It was there just she just wasn't that sick. It was just the drink in the urination. Or the drinking in the urination that was happening at that point. But they did admit us. Because it was a weekend. None of the courses started until Monday. And then we got into the diabetes clinic right away on Monday.

Scott Benner 6:48
Wow. I wonder if we'll never know. I'm just like thinking out loud. But I wonder if the illness also had her blood sugar driven up as well? Because it's a short amount of time, right? It was

Johanna 7:00
Yeah. Yeah. But her the thirst really increased really quickly to a point where I just couldn't ignore it. Like, you know, for a day or two, I just thought I'd like the can't be diabetes can't be diabetes. And then after a day or two, and it continues, you're like, kids diabetes? Yeah.

Scott Benner 7:16
Did you have did you have, I hope not list in the back of your head of things that might happen to her as she got older.

Johanna 7:24
Yes. And that was definitely one of them. So I know of a couple of, of children in the Down Syndrome community that have type one diabetes, we don't have anyone in our community group that has it. But I know someone online whose son has a type one diabetes and celiac. And then I know of a couple other families through social media who have it. And so definitely, that was one of it. One of the things that I was desperately hoping that she would not get, but here we are.

Scott Benner 7:54
Yeah, wow. The twins have any issues at all.

Johanna 7:58
ADHD. So they all actually have ADHD. And so they had me to thank for that. And I was only diagnosed with ADHD, after all three of them were and, and then it finally occurred to me, oh, my gosh, they're just like me. And so I went through the diagnosis process with psychiatrist and sure enough, I have ADHD as

Scott Benner 8:19
well, how does that impact them and you?

Johanna 8:24
For the twins and myself, it's emotional regulation. And so for them and myself, we we just have tantrums far longer than is really typical for children. And so they're eight years old and regularly have tantrums. Where they just cannot, you know, control their emotions. And for when you look at size of the problem, it's really quite out of out of range for the size of the problem of what we're, Oh, I see what the denied request is,

Scott Benner 8:58
I want this soon. You wanted that spoon and four hours later, we're arguing about itself kind of thing.

Johanna 9:03
Something like that. Yeah. Mostly two denied requests. So can I go to the park? No. And then it's a massive meltdown. And, you know, for students and for children in grade four? Like, that's a pretty big reaction for Yeah, how does that know?

Scott Benner 9:16
How does that look in your life?

Johanna 9:18
For me? So I've had all kinds of issues with emotional regulation growing up, and I, by the time I was in my early 20s, I had a diagnosis of major depressive disorder. So what happens is when you don't treat emotional dysregulation, when you're young, it just turns into something else. So for me, it was anxiety and depression, which has stuck with me throughout my whole life. And so I'm on medication. Now. I have been for years and years, I do much better on the medication, and being on the medication helps control my ADHD symptoms.

Scott Benner 9:53
Well, you know what you need your kid with Down Syndrome and type one diabetes, right? That's perfect. Are you

Johanna 10:00
right? So actually having Kipper Down Syndrome has been sort of probably the most transformative thing experience of my life. So it was the very first thing in my life that a challenge and an issue that I have had that I had faced that I couldn't change. So if I, you know, had a job, I didn't like I could change it. If I didn't like what I was taking in school, I could change it. If I didn't like where I was living, I could move, you can't change Down syndrome, you cannot take chromosomes out with people. And so I had so much work to do on my thinking about disability and Down Syndrome and cognitive disabilities, that I was forced to take on when my daughter was born. And I did take it on, and I worked through it with a counselor, and then just, you know, by myself eventually, and it was very freeing. So it was very freeing to just be able to let go of my judgments of things all the time. And to really accept my daughter for who she was and where she was at and really celebrate every single milestone that she went through, for and without comparing her to other children. And so I did some work with mindfulness, mindfulness is when you, you sort of just you pay attention without judging what what you're seeing. So I could really pay attention to where she was at the milestone that she was working on, and then really celebrating when she got past it, or when she met the goal that she was working on. And I still do that to this day. And it really allows me to see her for her without comparing her to other children or her sisters. Or, you know, her peers in her classroom.

Scott Benner 11:45
Right. What seems like a wonderful gift actually.

Johanna 11:48
It really was. Yeah,

Scott Benner 11:51
yeah. Wow. Okay, so my last question before I move back to P is, are there other autoimmune issues in your family? Line?

Johanna 12:02
Yeah. So there's no, there's no type one diabetes? My grandmother had hypothyroidism. And I think she had I forget what it's called. But when you lack B vitamins, pernicious anemia. And that's it, as far as I know. So it was out of the ordinary Oh, my husband's side, they have lots of hypothyroidism and high blood pressure. I don't know if that's family has it.

Scott Benner 12:32
You just get it when you get it when you get your license

Johanna 12:35
breaks? No, they're polish. And so I think it's actually very, very common in the Polish community.

Scott Benner 12:42
Yeah, that's interesting. Okay, so I'd like to take a little time to understand what it's like to raise a child is it is Down syndrome, like, I don't know, the phrasing, like I want to say downs, but I don't know if that's okay. So,

Johanna 12:57
in North America, it's down. And so in Europe, they say downs, but in North America, it's Down Down syndrome. You can also refer to it as teach you one or Trisomy 21.

Scott Benner 13:14
For me, that's not known as fine. Yeah. Okay. Sit down. Okay. But Down syndrome is okay, as well. Oh, yeah. Got it. Okay. So is this something you know, in utero? Or do you learn at birth,

Johanna 13:32
it can be both. So we did do. So the triple screen at around 12 weeks, and our chances of Down syndrome are higher. So it was one in 17, which is about a 6% chance. And at that time, we just thought we'll just wait and see what happens at the 20 week ultrasound, see what we can see. Because oftentimes Down Syndrome comes with heart defects or other kinds of differences in utero. And so we thought we'll just deal with it when if we see something different. So we get to the 20 week ultrasound, everything's perfect. She measures perfect. She's good size, there's like absolutely no differences. So we really just, you know, push it to the back of our heads. This isn't happening. She's not gonna have Down syndrome or she's perfect. And so my Waterbrook early, around 36 weeks, we went in, had her she loved muscle tone when she was born. And they immediately suspected Down syndrome. So we just went through the whole diagnosis process. She needed a little bit of extra help when she was born with the eat six, eat, suck, swallow. And so she wasn't NICU for a couple of days and then was really stressed after that, where we went through genetics and then we got connected to something called the Down Syndrome clinic, what was in our area, and we started receiving therapies right away. So we've got PT, OT and speech therapy, which is really for eating at that time, and then connected to other families as well, who had children right around the same age as us. So we have, you know, four or five families that we're quite close with that have 12 year olds with Down syndrome now,

Scott Benner 15:16
right? Are you able to? I don't know if he can think back that far. But are you able to? You're able to absorb it when you're learning it? Or is there so much to do that? You go on autopilot and follow what you're told?

Johanna 15:38
That's hard to say. I mean, it's 12 years. Yeah. So there was a time when I just had to wait and let my baby be a baby. For the first couple months before I was ready to jump into the Down Syndrome clinic and start with the therapies. It was a hard time. Yeah, for us. But once once I got going, and once I realized, this is what I need to do for my child, to give her the best chance, then I just did it.

Scott Benner 16:12
I want to I want to ask, but I don't want to infer, but is that a? Is it a? Is it a feeling of being let down? Is that shock? Like? How does it? Like? Do you know what I mean? Like what's the core value when when something this unexpected happens?

Johanna 16:32
I think there's something different when you know, right from birth, that your child is disabled, and that their life is going to look very different from your life. And so I really had to work through that, and what it meant to me, and then what it meant to her experience in the world. And it took a while. But what I came to is that it's okay to have different experiences in the world. And that, just because her experience will be different than mine, it doesn't make it less valid. And it doesn't make it something sad or a tragedy, she can have value and worth and that her value and worth doesn't come from her intelligence, or her lack of disability,

Scott Benner 17:20
or the way you expect life to go. Or your expectation on it. So what is that experience? I'd like to break it down a little bit like what does that experience look like? As an infant? How does it How does it differ from what you saw with your twins,

Johanna 17:34
right? So everything was just slower. So it's a slower pace of meeting milestones. She had difficulty with feeding right right from the beginning. It took her longer to, you know, sit up, to crawl to walk. But you know, she was my first and so I just wanted her to get to reach those milestones, and to, you know, to beat the ideas of what it means to have Down syndrome and that you're always going to be developmentally delayed. And then when I had the twins and everything was so fast with them, I really could look back and and feel happy for the slowness of the pace of what happened with her. That, you know, it was okay for children to take their time. Like, when you look back on your child, your child's growing up, like that period of baby and toddler hood is so fast now that they're eight years old. And you know, it's like the majority of their life is going to be as adults, and as these, you know, amazing little independent beings. And so to have like a really slow period at the beginning. I think it's okay.

Scott Benner 18:46
Did it feel a little like you got to enjoy it more?

Johanna 18:50
I did, except yes and no. So I looking back, I enjoy looking back on it, but during the time that that I was still going through that intense period of adjustment, so that I probably didn't enjoy it as much as I could have had I had a little bit more perspective.

Scott Benner 19:05
Yeah, I would imagine. I I don't think this is obviously an apples to apples comparison. But I find myself I get I get upset with myself if I'm in a in a regular interaction with my family, and I don't look them in the face. Like you know, when you're doing something else and talking to somebody, I find in hindsight, I look back and I think you know that he's not gonna live here one day, and I and I had that conversation with him. I wasn't looking at him. It makes me I don't know, it makes me I try. I guess that's what people talk about being present maybe. But I just tried to, to remember that, like, we can stop and do this thing right now. Like, you know, the other day I had some work to do. It was for you guys. And I realized my son was downstairs watching a baseball game, and I just I just stopped what I was doing and went downstairs and watch the game. with him, and we talked and watch the game and stuff and, and I just thought like, I don't know, like this moment only it's only here one time, you know. So that's what I meant by like, enjoy it.

Johanna 20:12
You know? Yeah, it's time you don't get back.

Scott Benner 20:14
Yeah, it's I don't know you don't realize it till until you get older and they get older, usually. So okay, so. So that's her like in that kind of infant experience is that everything developmentally happens a little slower. But what happens when you get to the next leap? When you're four years old and you're expecting? You know, like most kids are getting ready to go to school and things like that. Is that thing happening for pee as well or?

Johanna 20:41
Yeah, yeah, so we have early intervention preschools here. And she did two years of an early intervention preschool, so half days, and then during that time, her sisters were born. And then half day kindergarten, and then regular school. And so we have a really, really wonderful school board that my daughter goes to, and it's fully inclusive. And so when you have full inclusive school boards, it means that they have more money to spend on EAS to help kids in their regular classroom. And so that may not work for some families that really works well for ours. And P has always had an EAA with her in the classroom. So from kindergarten up to grade seven, now, she has an EN in the school, or one of a couple of different EAS during the day.

Scott Benner 21:36
Education Assistant education assistant Yeah, yeah, I was guessing. But I wanted to be sure that's fine. Yeah.

Johanna 21:43
And so and that person helps her with adaptive curriculum that can help her with daily living tasks. So taking her to the bathroom and back, helping her open her lunch kit and whatnot, she can do that by herself now, but her fine motor skills are quite delayed, and so even been able to open her lunch kit or the packages by herself, she would need help, potentially. And so that person would do that for her, and then help her with her death score,

Scott Benner 22:12
because well, her I'm sorry, less

Johanna 22:15
adapted schoolwork. Okay, so her schoolwork looks a little bit different than her peers that she's working on a couple of years behind them. But she, which is fine. She's working at her level, and then she still gets exposure to the other ideas and the discussions that are happening in the classroom, which I think is to her benefit, whether she can express, you know, her understanding of those ideas or not.

Scott Benner 22:38
So when does it speaking come into play?

Johanna 22:43
She starts around between two and three, really talking. And before that, we did a lot of signing with her. And so she learned, you know, she had well over 100 signs that she knew and that we did with her, and that she brought with her to preschool. And so the signing was really a bridge to her talking. And then really helped with the articulation or understanding because her articulation is quite impacted in her speech. So you know, she could say more, or help, please. And from time to time, I still am in science now. And she will still find like sorry, on her chest if she sorry for something because she has a hard time saying it out loud. But it was really quite a nice bridge for all of us.

Scott Benner 23:31
Okay. All right. So your expectations are, you're trying to get her to what like, I mean, if I if I send my son off to high school, my expectation is he's gonna learn a bunch of stuff and either go to college or trade school or something like that, and then he's gonna leave here and ruin some other girl's life the way I ruined his mother's like, you know, like, that whole thing is gonna happen. Yeah, so, but what what are your expectations for pain and your goals,

Johanna 24:00
that's to gain as much independence as possible. So to be able to, you know, bring up a reading level, she's, she can read around a grade two, three level right now, which actually isn't terrible. So if we could bring that up to maybe grade four, or five before she leaves school, that would be amazing. I mean, that's the reading level of, you know, the lower, like the sun kind of, say, newspaper, if anyone reads newspapers anymore. So to bring up her reading level, to be able to do you know, a little bit of math and to bring up her independence level, so that she can reach as much independence as she can. As as a young adult, and you know, part of that independence is her diabetes management. And so we do have her involved in her diabetes management, so she has her own phone. She can look at her number on the phone and she can tell us if it's a good or bad number, so she knows that you know about eight is a bad number. And then below 3.9 is a bad number as well. And the rest of them are good numbers. And definitely those colors on the Dexcom app help, right?

Scott Benner 25:11
Well, I have an idea for you. Actually. I'm going to tell you in a second, but I want you to tell me, are you thumping your foot or tapping while you're thinking or is that coming from somewhere else in the house? Because I think you're making points and tapping something.

Johanna 25:24
Oh, I was tapping my hand. Yeah. Sorry. Sorry.

Scott Benner 25:27
I have to stop Jenny from doing it too, by the way. Okay. She gets it back. And I'm like, stop striking the desk. We're recording this. You've been doing this for years. So what I was going to tell you is that just over the weekend. When you have diabetes and use insulin, low blood sugar can happen when you don't expect it. G voc hypo Penn is a ready to use glucagon option that can treat very low blood sugar in adults and kids with diabetes ages two and above. Find out more go to G voc glucagon.com. Forward slash juicebox. G voc shouldn't be used in patients with pheochromocytoma or insulinoma. Visit G voc glucagon.com/risk. Are you looking for the diabetes Pro Tip series the bold beginning series asks Gatan Jenny algorithm pumping mental wellness defining thyroid defining diabetes all of the series within the Juicebox Podcast Well, if you're looking for them, I can tell you where to find them. If you're in the private Facebook group, they're all listed in the featured tab of the group. Or you can go to juicebox podcast.com. And go up to the menu at the top. And you will find links to all of them, you'll get lists of the episodes that include the episode number, and you just have to go back into your player, find your episode, and you're on your way. You can also listen to Juicebox Podcast DICOM if you don't want to be bothered with all that player stuff, though, honestly, that is the best way to listen to a podcast. That's pretty much it. Everybody, I appreciate you listening. I'm gonna get you right back at Joanna, a lot of podcast left for you today. I hope you're enjoying it. I'll see you soon.

Just over the weekend, I had an interaction with a gentleman, I think his name is Kevin. And he invented something called glucose. And Jenny told me about Chase like, Hey, I gotta glucose. Have you ever tried this? And I was like, Jenny, I don't know what you're talking about. And she goes, Well, I heard about it in your group. And I was like, Oh, hold on a second, I do know what you're talking about. So it's this little kind of light. That's a, I'm holding my hands up, like maybe it's a softball size I'm imagining and, and it through your Dexcom. I'm assuming she has Dexcom he has that right through your Dexcom credentials, you log into it, it goes on Wi Fi, and you assign colors to number ranges. And it just changes slowly. As you and I was thinking maybe that would be that might be great for her actually. You know, it definitely could be Yeah, just as you were describing, like we because you've taught her like, you're you're basically teaching her ranges by showing her like here, come to me, I'm assuming if this number is in the space, is that how you've set it up with her?

Johanna 28:26
I'm just more we have her check regularly, and then tell us what the number is and tell if it's good or bad. Okay, and so if it is, I mean, we know when it's bad because the alarm goes off. And she knows what the alarm means.

Scott Benner 28:38
But you're also trying to teach her for I mean, yeah, I just wanna I hate to say this, but like, is everything in your life the focus of when I die? Because that's how it would feel to me, like, how was this gonna work when I'm not here anymore? Would be every one of my concerns. I feel like,

Johanna 28:52
yeah. I mean, no, that's not the focus of my life.

Scott Benner 28:56
I might have overstated that, but you don't I mean, like, it's got to be the back your head on some things, right?

Johanna 29:01
Yeah. Yeah. So I mean, I can't tell the future. But people with Down syndrome tend to not live as long as you know, the typical population. And so, you know, my hope is, is that she has a really happy life until it ends and that I'm still here. And, you know, if not, her sisters will be here. And we live in a place where she would receive funding for like a staff member to live with her. Or she could live in a group setting with staff. So I know that she will be taken care of once we're gone. It's just how that looks that we don't know.

Scott Benner 29:39
So I'm looking here is the is the is the average age for a person with Down 47. Is that right? Yeah, yeah, that sounds right. What what is the what's the physical thing that causes that Do you know?

Johanna 29:56
Well, so it's hard to say because really It's only people with Down Syndrome have only been treated well, for the last 30 or 40 years. And so, you know, oftentimes before that families were told to put their children in institutions where they were mistreated terribly, or their medical concerns were not treated ethically, or the way that you would treat a typical person. And so even in 1980, there was a case where a baby was denied. A newborn was denied medical treatment on the recommendation of the doctor. And the parents took that recommendation. They went, I think, to the Supreme Court, and they allowed the baby to die. So in today's day, that would never happen. But there was a lot of medical ableism against children with Down syndrome. And people with Down syndrome. They wouldn't treat the hypothyroidism they wouldn't treat birth defects like the heart conditions, and then they were allowed to die

Scott Benner 30:59
or even like you're describing like, like not a not a natural desire to eat like those those physical functions like sucking and like that stuff, too. Oh, that's crazy. Hey, sit on your hands for me. Pick up your pick up your thighs and stick your hands on it. Okay, tap on your thigh while we're doing it, it's fine. You know, you just use the word that I'm a little aware of. Medical. I'll be using our bliss. Oh, ableism ableism. Sorry, I see that word. And I every time I see it, I'm like, I look it up. And I'm trying to make sure I remember but discrimination in favor of able bodied people.

Johanna 31:41
Or non disabled people? What

Scott Benner 31:42
does that? What does that look like in like real world? Like function? Like how can i How could that happen?

Johanna 31:51
So a friend of mine went to the doctor because her daughter's her daughter is Down Down Syndrome her I was turning in. And so when regular kids have their eye turn in, they see an ophthalmologist, they get treatment for it, you can have surgery for it. And the first doctor that they went to, well, we don't even know she's using that idol to see because she has Down syndrome.

Scott Benner 32:17
You probably need your I forget it. Oh, I get it. Okay. All right. All right. All right. So I'm sorry, how does that look in, in the zeitgeist in when people do something that's not so material to you, like a doctor who can actually say, No, I'm not going to give you care? Because you have Down syndrome, and you're probably not using your right. Like, how does that work with just? Do you know what I'm saying? Like, where does that term? I'm not asking this question, right? Hold on a second. I didn't sleep much less like I have a daughter with diabetes. So give me a second. How could I do something insensitive as a person who doesn't have actual agency over your daughter? Like, what would that look like? You know what I mean? Like, what do people do around you that falls into that category? Is it? Is that possible?

Johanna 33:16
Um, no, but like, for me, personally, I while I would always, I would always challenge someone who chose, you know, said I wasn't I'm not going to cheat them because of Down syndrome. Or I'm only going to look at this because yeah, I don't see that happening around me personally.

Scott Benner 33:36
Okay, so I'm now remembering the context I saw somebody talking about they had a spouse who was having border like they, I think they thought of, maybe they had borderline personality disorder. And they started talking about the spouses. I don't know overall behavior, and set and attaching it to the idea of the of the borderline personality disorder, and a third person came into the conversation and said, Be careful not to be and they use this word, which Why can I not pronounce it? Say it again? For me? Medical ableism No, no. Why can't I say A B? L e is what is that's ableism ableism. Why am I not saying oh, it's the way it's split up in front of me. Okay, so somebody came in and said, Hey, make sure not to be like, you know, ableist because, and then I couldn't figure out what they were saying. And so I guess what they were saying was don't just blindly attribute the behavior to the disorder. Is that what a disability Do you think that's what I as I take you way down the path, it has nothing to do with your story, but I just You caught me thinking about it and you caught me on four hours sleep so so I might, I might have ADHD at this point in the morning. The two of us together are going to be terrific. Okay, all right, well,

Johanna 35:04
so, like a parallel example would be, you know, going in and, and saying, you know, sorry, P is doing this behavior, and someone says, oh, that's just Down syndrome, or you know, has a symptom or it's just down syndrome. without really looking into it. That's ablest.

Scott Benner 35:19
Okay, just disregarding other operating options, because you have this thing and just saying, Oh, it's definitely that. Okay. Yeah. Thank you. I appreciate that. I hope everyone listening appreciate it. But I appreciate it. I always like why you're like, Well, I never quite understand when that you that words being used in a No, I do so great. Okay, so and I caught you saying her names, and I already wrote it down. So I'll take it out for you. Don't worry. Okay, so you wanted to be I wanted to go back to something I have one last thought, right. You mentioned that she can even have trouble opening her lunch kit or opening her food is that still at 12 years old an issue?

Johanna 36:05
Not so much. So she has developed some skills around that. So she's a highly picky eater. I call her a restrict highly restrictive eater. There's only about four or five foods that she'll actually eat. And one of those is goldfish crackers. So we got the small the individual packs of them because we can you know how many carbs are in them. And she can't open them by herself with her fingers. But she can get a pair of scissors and cut open the top and dump it into a ball. So she has learned some coping skills around that about how to do things or how to get things done work around her. Her poor find muscle control.

Scott Benner 36:46
What are the other foods that she'll eat?

Johanna 36:49
Right now, hotdogs, cooks carrots, goldfish, and ice cream sandwiches?

Scott Benner 36:56
How do you? How do you get nutrition to her then does she can she take? Like, supplements? Or what do you do?

Johanna 37:05
I'd like to she would take a supplement, there are no children's vitamins that she will agree to eat, so she won't eat gummies and then she won't eat any of the fruity jewels. Cuz she doesn't like the taste of candy. Okay, so she, we have had, like, it's sorry, my hands again.

Scott Benner 37:23
I've been doing it your whole time, John, I just see you. Even when you thought you weren't doing it, you were doing it. I used to and by now we're all we're all on board with what's happening so I can feel I can feel your anger, your anger. You do a great job. Like just so you know. At the moment, I can see Joanna but she can't see me and she just she's answering her questions so thoroughly. But she sort of disappears a little bit in the back of her head while she's answering them. Like your head goes back a little you're looking up a little and you're just you're doing a terrific job. By the way, if I if I gotta if I gotta live with you tapping on something, don't worry, I will. And I don't want you to feel uncomfortable, although, so far you don't appear to be aware of it. So I don't think you're uncomfortable. But but don't don't think about it twice. Please. Except sit on your hands. Don't do it again. No, I'm teasing it. Okay. So there are only a few few foods actually. And so textures are a problem tastes are a problem. And it's not possible to negotiate with her.

Johanna 38:25
No, we just, we just cannot get her to eat foods that she will not eat and just she just will not do it. And if we get into any of those really negative battles where we're trying to force her to eat, it really just makes her mistrust of us in a food worse. And so we don't do it. We don't get into Excuse me. Battles about food. Okay, I'm

Scott Benner 38:50
sorry, I got coughing I know you do your let me ask you while you're taking care of that is have Have there been foods that she would eat that she will no longer eat?

Johanna 39:00
There happen. So we've had a it's been a really difficult year this year. So she was she was diagnosed with diabetes. Three months later, she got COVID She became dehydrated, she had a stroke. And after her stroke her her eating and drinking was impacted. And so she was fully to bed for quite a while while we worked on getting her eating and drinking skills back. And during that time, her food restrictions became worse. So she used to eat a variety of different proteins before so she didn't any different kind of protein. She'd eat, like pasta with meat sauce, and we could chop up sort of small vegetables in there. And now she won't eat many of those things since that time. And so it really has impacted her in her picky eating with the stroke and then having to go to the feeding tube. So she still has an NG tube. So she's a tube that goes through her nose and then We will be moving to a G tube. So that's a tube that is on her belly that connects right to her stomach, this is more of a permanent route that we're gonna have to take. And so we have to do that for two reasons. So one is because her picky eating is so much that she does not take in enough nutrients to sustain herself. So previously, she was she always took in enough nutrients and enough calories to, for her to learn and grow. And we had seen an eating clinic previously. And they said, Really, we just recommend that she get a multivitamin, if you can get one in her butt, but they didn't recommend supplement, or supplementing up until we had the stroke. And we had to. And then the second reason we need the feeding tube is because we we need to manage her fluid levels. And so they said that the dehydration is really what caused her stroke. And she's not taking in enough liquid now by mouth to manage your fluid levels. So we have to keep the to bed,

Scott Benner 41:03
did the stroke have any long term effects

Johanna 41:06
just with eating and drinking. So those are the big ones, it was a right sided stroke. And she did regain all of the her muscle control and function from the stroke eventually. So it came back within about three months. It was pretty much back to normal, except for the eating and drinking.

Scott Benner 41:25
How do you so what I'm hearing is that she has a choice and she doesn't like the choice. It's a no. But now but now we're talking about things that I assume she wouldn't agree to like a feeding tube or something like that. So how, how is it? How do you get to those things?

Johanna 41:41
It's really hard. And so we throat you know the whole experience, we perpetrate medical trauma on her. And so it started with the diabetes. So with the second day we had to hold her down to do finger pokes. And even to this day, she doesn't allow us to do finger pokes, we do toe pokes. That's the only thing that she will allow us to do. And even then it stopped setting for her. So we did get on the CGM. Within three days of her being diagnosed with diabetes, they got us on a CGM right away so that we didn't have to poke her as much. But we were put on a lever to and with a lever to you're still supposed to poke to confirm those. And so we were poking her multiple times a day, depending on what the sensor was doing, which was terrible. Like it was really, it was not good. And it was causing her quite a bit of distress, which is why we did eventually move to the Dexcom which is significantly reduced the amount of pokes that we have to do for her. Yeah,

Scott Benner 42:47
even and then even the CGM honor. Like

Johanna 42:50
she's not bad with a CGM. She's okay with that. Just one poke. And then it's done.

Scott Benner 42:55
But it's not. It's not like a it's not a thing where you say to her, hey, you know, we're poking your toes and you hate that if we use this less toes, like do you? Can you go through that? You do?

Johanna 43:05
Yes. Yeah, definitely. Yeah, this is a we don't have to poke you as much.

Scott Benner 43:09
And she's she's got she'll be like, alright, yeah, yeah, so

Johanna 43:13
she's good with the CGM. She finds we are in a pump now. And so we did jumps through hoops to get the pump early. So we had the pump within three months of diagnosis, which is very unusual in our province. They asked you to wait a year, but I was really getting hold of our first appointment. So what do I have to do to get to, you know, to get the pump, I did all of the pre work that you had to do. I watched the, you know, the video that I need to watch. And then while we were hospitalized for the stroke, they agreed to put us on the pump while we were there, John,

Scott Benner 43:44
I don't know anybody who would have the heart to tell, you know, to something you said that would help your life be easier or your daughter's life easier. I'd be like, let that lady have what she wants. And but Yeah, no kidding. Yeah.

Johanna 43:55
So they really worked with me I was I was really happy with it. But still, she doesn't like the pope from the pump. And she gets she finds it really upsetting. Last week, we were going through a pump change, I taken it off, and we were just getting ready to put it on. And she said to me, you say sorry for the Poke mom, you say sorry for the Poke. And she said it over and over and maybe apologize to her over and over. And I did obviously because I don't like having to do things to my child that she is not okay with and then hurt her body. But we have to, right. So I have to, you know, create medical trauma for her she has to live through medical trauma, because this is the only way that we can manage your diabetes.

Scott Benner 44:36
Well, I you know, I have to say, I, I've been through that. I think a lot of people have been through that. But the difference for us is that it was going to stop at some point that my daughter was going to understand or you know, create an understanding for yourself. And I mean, you know, I think we've all chased our kids with a needle in our hand. But, you know, the idea that one day, this would become normal. We won't do this anymore. You're stuck in a? Yeah. I mean, now, yeah. For now, do you think it makes you make sure? So what do you do? Like, I'm assuming you go to her care team and the people that help her and say, look, here's one of her struggles. How do we get past this? Is it something they work on? Or is it just you just kind of hope?

Johanna 45:19
No. And it's not anything I brought to her care team, either. It's just something that we work through at home with her, and that it just takes longer for her to process and for her to develop understandings about things. And so you know, even the other day, it seems off topic, but it's not. She said to me, you know, I really miss my, I miss grandma, and I want her back. And grandma died five years ago. And Phoenix was, you know, seven when grandma died, but it still comes up for her. That is something that she's processing five years later. And of course, I'm still processing five years later, too. But that, you know, this understanding of grief and loss takes longer to work through. And I think that there is grief and loss with diabetes in terms of, you know, your understanding of what life was like before and what life is like now with diabetes.

Scott Benner 46:18
Wow, that's a powerful actually the that came up for like the Wow, okay. Or, I mean, it's been 45 minutes, and I, I stopped myself every 35 seconds from asking you if you're okay. You know, I'm fine. I assume you are, you wouldn't be talking to you about it, but it's still Mike, are you okay? Are you okay? Because, I mean, you live in a frozen hellscape. In Canada, I don't know exactly where I'm you know, whatever. But you say that,

Johanna 46:53
but we have had the nicest fall that in, you know, in like living memory. It is 2122 degrees every day for the last six weeks since summer ended? Which I know what's the conversion for that? 40 like 70 something.

Scott Benner 47:10
Okay. All right. Well, don't ruin my by ruin my misunderstanding of Canada, please. I just wanted to say do you run out in the snow often and scream into a pile of it? Like how do you like, like, when you when you have that thing? Where, you know, you feel like you're not just feel like but you are clearly creating medical trauma out of need? Like, do not like you don't look like you're drunk while I'm talking to you. I don't see. Oh, I don't see any heroin needles behind you. I don't know why, but like, what do you what do you do for yourself in that situation? Or do you not stop to think about that?

Johanna 47:49
I try not to stop to think about it. Like I just have to the only way passes through.

Scott Benner 47:55
Okay. I understand. I guess it makes the eight year olds ADHD seem like nothing, huh? No, no, no, no. So so then you said then that I'm kind of trying to lead to a question when you have a child who has this much need. And I want to understand like in a 24 hour period, how much time do you think you give to pee? How do you get to something else when other people have needs as well?

Johanna 48:22
Yeah, there's lots of downtime in between when we're doing diabetes tasks and not. And so there's lots of time to spend with the other two, we have a really nice bedtime routine that I spend time cuddling with the twins right before bed. So we do they each get 15 minutes, and then we switch. Then iPads are off or lights are off and then gets sorry, pee gets cuddled to sleep. And the other two go to sleep by themselves, because she doesn't pee doesn't get cut off time. Before lights are off. So it's just a nice balance. We do I will spend one on one time with with each of the twins, I'll take them out on an errand, or we will do mommy daughter dates. And I tend to do those with the twins and not with P because P does get a lot of our time and attention.

Scott Benner 49:14
Okay, is that what so this peanut get cuddle time because she doesn't do well with it or because you want the other kids to see that she doesn't get everything. I'm trying to figure out where your thoughts goes

Johanna 49:26
that she doesn't get it. She doesn't get everything. And she mostly likes just to be cuddled to sleep. She doesn't care if she gets the cuddle time before. Gotcha. Yeah, so it's just meeting each kid's needs in a way that works for them.

Scott Benner 49:41
I would take her cuddle by the way if you were around like a very empathetic lady. I think it would be nice speaking out keep that in mind. Yeah, well listen, my wife got sick on a business trip. I might be in the in the market for a wage earner around my age anytime now because she's coughing and holding her chest and I'm like, Oh, this is it. I told the kids already has like, you know, do you want me to try a blonde next time? Or what do you want to do? But my daughter, of course, if you heard her on the podcast doesn't trust Angular job blonde with. I don't know if you heard her say that. But she's like blonde ladies with real Angular faces. I don't trust them.

Johanna 50:25
I missed that part. But I did listen to both of her episodes. I really enjoyed them.

Scott Benner 50:29
Or maybe this is something she's only shared with me that I'm assuming she said on the podcast. Anyway, she, I'm glad you enjoyed them. i Wow. My next question was about your husband. He's a saint, or he's chained to something, what's going on?

Johanna 50:48
She's neither. So he's involved in in almost as much of the Tata diabetes and feeding tasks as I am. He, as I'd say, his management of her diabetes is equally as good as mine. And it took them a little while to get around to we really need to keep her blood sugar's quite low. And he's there now. And so he does a really good job of managing them in my absence, or when it's sort of his turn to do it. So we, we have some really great a onesies. So our a onesie at diagnosis was 13.82 months later was 8.0. And five months later is 5.1. Okay, yeah. That's amazing. It was amazing. Yeah, yeah. So one of the benefits of her being a picky eater, is that you really get to know the foods that she eats. Yeah. And I really know how to dose the foods and she eats. So we do a really good job of keeping her blood sugar's in range. And when they're not in range, it means that she's gotten up earlier than I have, and she started eating, or that her pumps gone, and that we need to replace the pump. Yep, so either of those two things.

Scott Benner 52:02
She doesn't do anything with any fat or protein that would drive up blood sugars later.

Johanna 52:07
She does. Yeah, so the hotdogs and the ice cream sandwiches, typically cause a spike later on. And then that's mostly at night. And so we really see between sort of nine and midnight, her blood sugar spikes, so I'm, I'm really trying to work with her Basal rate at that time. So I've just increased it the other night. And then it went up a little bit last night. So I corrected and I might try and increase tonight. It's hard, though, because sometimes she doesn't get the rise. And then that Basal rate is too high. So oftentimes, we just correct, but we're, I'm quite on it with the correcting. So we'll start at like seven correcting

Scott Benner 52:45
earlier, I was just teasing you because I assumed he would run away, but he sounds like a good guy. So

Johanna 52:50
no, he's a really good guy. You know, he, he adjusted much better than I did with her down syndrome diagnosis, and he was really a rock at that time. And his perspective was always like, she's fine. She's perfect. It'll be fine. Yeah, that was, you know, and

Scott Benner 53:07
I just assumed that every time you left to go to the store or something I think by that said, She's not coming back. Every time I say goodbye to you, it'd be like the last time I went by John, I love you. It's been great. I know you're not coming back.

Johanna 53:22
There's something about being a mom that there are you want to do that, right? Yeah, you just do it.

Scott Benner 53:27
Yeah, that's something it really is cool. So the diabetes stuff. You know, I'm learning that when people say they're on a pump, and don't say it's an omni pod, they're trying to save my feelings somehow, which is not necessary. But what

Johanna 53:39
knows? It is an AMI py. So she's on an heiress. And one of the things I disliked about it is that it's because it's the like that first iteration, where you have to use the buttons all the time, and it's not a touchscreen. And so I really feel like if we're going to move down the path of, of her creating, learning more independence with her diabetes, she has to be able to use the pump by herself and she can't with the

Scott Benner 54:08
arrows because the old PDM still,

Johanna 54:11
that's the only one that's funded with my potential program right now. That's fine. So it would be far too expensive to do it on our own.

Scott Benner 54:18
So I blame Canada. Yeah, for sure. Absolutely. Well, and is that another song in South Park? Sure. Is. Yeah, I just thought I didn't make those words. I've heard those before. So yeah, so I blame Canada so you would prefer to be on the dash or the five? Probably the dash.

Johanna 54:37
I, you know, I don't know about the five with the target blood blood sugar being sort of higher. I mean, what's amazing is that, you know, our our ability to manage her insulin and hurry when z is you know, at the level of the LP five or exceeded. And so I don't know. And I have considered looping. I'm not quite there yet with, you know, building the app myself, although we do have a Mac that I could build it on. And I'm just anyway, I'm still just mulling it over to see if that will work for us. It will work for us in terms of getting her overnight level really dialed in. But there's a lot of work on my part to get it up and running.

Scott Benner 55:28
That's exactly what I was hearing. I was like, when are you going to do that? Exactly. Right. Yeah, exactly. And learn a new system and everything else. Yeah, yeah,

Johanna 55:37
yeah. But I do think, you know, something to, that I would like to look at is, is the, you know, the new, even, you know, the Dexcom or the Opie five, how user friendly? Is it for people with disabilities? Like how user friendly? Would it be for someone who doesn't have fine, great fine motor control? Is there a way that it could be adapted, so that to make the screens really simple, or make the app really simple for someone with intellectual disability so that they could, you know, just, you know, put in their carbs? And, you know, press go and be able to do their own insulin?

Scott Benner 56:11
I have to tell you, I don't think the loop app would be friendly for her. No, yeah, that would be because there's a lot of like, fine. There's a lot of fine touching, even like changing. Like, as I'm thinking about it, like if you put in a Bolus for a meal and decide later, oh, I wish that I wish I would have told it. It was 35 carbs, not 30 carbs. Just touching that, like there's double tapping involved in to highlight things. And if that would be, that might be difficult, honestly. Yeah. Oh, son. I wonder if another glad. So no, no, you need somebody to design a simpler screening system for it.

Johanna 56:47
Exactly. Like I think that would be a great way. I would a great sort of side project for someone to take on.

Scott Benner 56:55
Yeah, even older people, it would be valuable there too. Yeah, yeah.

Johanna 57:00
Can we do an adopted app for people with disabilities?

Scott Benner 57:03
By the way, I had to close the browser in front of me, because now I look at the word ableism. And I think how the hell were you mispronouncing that, you idiot. I just kept looking at it thinking like, how did you? What were you doing? Oh, my goodness. All right. Your. Your you said you take medication for depression, anxiety? Yeah. Okay. And that's working for you? Oh, yeah. Yeah, I mean, because you're in a weird situation where you don't have the, you don't have the benefit of being able to like fall apart. And yet you're, you have a thing that if you were to have a crisis, it's not like something you could just like, willfully stop. So has that happened?

Johanna 57:56
Have I had periods of time that I have been unable to cope? Yes, for sure I have. And, you know, I'm in a really fortunate position, that I have quite a bit of sick leave that I could take from work, which I have done in the past. And, you know, all I really need is a doctor's note to do that. And then it kicks in, I still get paid. And then I go back when I'm feeling better after I work with my doctor. And so that's been really helpful. The fact that I've had that, as you know, as something I can do, where I can really focus on my family. So when P was had her stroke, by took a month off, and then went back after that, and everyone was really understanding. So I work in the education system. And really, there's a, you know, a belief that you really do need to focus on your family first, because that is what's important, and that the work will be there when you get back and it was

Scott Benner 58:55
Does your husband kind of like step it up then at that point?

Johanna 58:59
A little bit. Yeah. Yeah. He

Scott Benner 59:00
has a job I imagine too, right. So

Johanna 59:03
he does. Yeah, so we work opposite schedules. So I work during the day I get home, he goes to work and works in the evening. Okay, so we have some crossover on the weekend. But we do work in some ways. It's like passing ships in the night.

Scott Benner 59:17
Is that something you set up because of P situation?

Johanna 59:21
No, not necessarily for p but for the twins as well. And not and not wanting to pay for childcare? Because there's two of them. So it's more expensive. Yeah. And so we the Pete, the twins have never been in childcare they've never had before and aftercare. We have had a long term aide that works with our family who's been incredible. She started with us when the twins were like three or four months old. And she's been with us ever since. And they're eight now. So we do have in home support. And it's for everybody. It's not just for Pete, that she spends a lot of time with the twins, working with them as well.

Scott Benner 1:00:00
You know, you've highlighted something today that I want to, like, just shine a light on for a little longer. I was interviewing somebody recently, who was having a lot of anxiety around keeping their kids blood sugar kind of perfect. And I said, Well, I mean, that's not what we do. And I started talking about art and going to college and the food changing and how that's impacted her blood sugar's and she's like, well, you're okay with her blood sugar being, you know, when she just said a number. And I was like, I mean, I'm not okay with it. But that's the situation. And, and the sooner you I don't know what it is, I don't know if it's an expectation of perfection that we have, or if that's just people's goal for everything to be beautiful, and easy and well funded. And, you know, everything right, there should be bird singing and music playing wherever I walk. And once you can let go of that, and not do what you were talking about earlier, like, not judge a person against another person or a person against the situation. Excuse me, everything just gets so much better. And, and, and I think what she was saying to me was, but a higher blood sugar could cause problems. And I said, Well, yeah, that's, that's true. But you have diabetes, like, you didn't get the same, you didn't get the same role that other people get, you know what I mean? And, and also not for nothing, but how many things in life are damaging you hurting you are setting you up for some sort of a problem in the future that you're unaware of, that you ignore to or that you're aware of, and you ignore one or the other. So I don't know that a 140 blood sugar after a meal is any different than somebody I see walking, I'm thinking of a person I know right now must drink six Coca Cola a day. But, you know, but doesn't have diet doesn't have diabetes, so they don't think anything of it. And I don't know that there's a difference, if that makes sense. You know what I mean? And and you've been able to? And I know, you said it very simply like, well, this is what had to happen. Right? Like I had to see the world this way, which I think you're right. I think that is what you had to do. But it doesn't mean you were going to be able to do it. Right. You know, and that's really cool. It's cool that you did that. Yeah, it was a lot of work to get there. Yeah, I would imagine, like because, because I don't know how you don't say why me? Or why her or why us? You know, and I did yeah,

Johanna 1:02:30
yeah, for sure. I did. But I did get to the point where it didn't matter why. Because what I came to is that these things happen in nature. Like, that's just what happens is that sometimes, you know, you get extra chromosomes, sometimes tentative things happen, like these things happen. And it happened to me in my body. And it happened to her just like the diabetes did, and but I did with all the work that I did, because of her down syndrome. When the diabetes came, it wasn't that hard for me to accept, it was harder for my husband to accept. But for me, it's like, Okay, I've been down this road before, like I you know, I can't bang my head against the wall because it won't change anything. She has diabetes, let's just go with, right.

Scott Benner 1:03:18
I asked this question a lot in these scenarios, and I'm frequently surprised by the answer. So I'm gonna ask it here. Magic Wand, something can go away. What do you pick?

Johanna 1:03:31
Down syndrome? Yeah, seems Yeah, that's what I because it because it created all the other things, right. So it created the alopecia created the hypothyroidism, it created the diabetes, it created her brain condition that caused the stroke. So for sure, I would take away the Down Syndrome.

Scott Benner 1:03:49
It's the founder of the face in this situation in not a positive way. I mean, I thought, like I said, seems obvious. But the amount of people I've asked questions to where I thought the answers to those questions were obvious. They say something different. Like sometimes people say neither. But I'm, like, fascinated by him. Like you can't even in a in a make pretend way. Pick one. And they're like, No, that's like, okay, where they pick, you know, keeping diabetes over something you would think you wouldn't choose vice versa. So it's interesting to ask the question, is there anything that I haven't asked you that I should have or anything that we've missed?

Johanna 1:04:28
No, I think we covered everything was pretty good.

Scott Benner 1:04:32
Are you saying I did a good job? Is that what you're saying?

Johanna 1:04:34
I am saying you did a good job.

Scott Benner 1:04:37
Because I already earlier said you did a good job and you did not reciprocate so I wasn't sure. Oh,

Unknown Speaker 1:04:42
I'm sorry. No, I'm

Scott Benner 1:04:43
teasing you i God my God. I don't mean that. How many people do you think heard that are like ah, so insecure? Really was just joking. Okay, so how much pressure do you feel in this conference? ation right now not to misrepresent Down syndrome for the people who might hear it or for who? Or for the people who are going to be learning about it. Does that feel like a responsibility? Or have you not thought about that?

Johanna 1:05:14
It feels like a background responsibility. It's a responsibility I always have. When I'm talking about my daughter, and really, I'm talking about one person with Down syndrome, and her experience of what Down syndrome is like, in our experience of what Down syndrome is like, and she's an amazing child. She's easiest of all my children. She's very easygoing. She's, you know, happy and she just loves being with her mom and dad and her sisters. Like, she's really a great part of our family. And so I think it's easy to, to represent her positively. Because our experience of her is very positive. I mean, all the other conditions up until diabetes and then the stroke have been very manageable. And haven't really impacted her life so much. I mean, for sure, the alopecia does, because she doesn't have hair, and she would really like her. And it's one of the first things that you notice about her when you see her. So whether it's Down syndrome, or or the alopecia first sort of, you know, up in the air, which one it is. And so that's been quite impactful. But in terms of, you know, her day to day health has been super good. She's never been hospitalized until this year with the diabetes. And she's such a great part of our family. Yeah,

Scott Benner 1:06:38
that's cool. I see. It's funny, because when when I looked at the list, I thought, well, alopecia that sucks, but great opportunity to wear a bunch of hats. But she can't. That's not the process. Her mind goes through it, right. She doesn't like yeah, it's just this thing's gone now. And it's either a problem for or it's not, and it ended up being a problem for I see. I tell you having more kids, ballsy as hell, you're reading the bravest lady I know. Or were you were high as a kite. I don't know what it was exactly. But I don't know how you made I couldn't, we couldn't even make the decision to have a third kid after the diabetes. Like I that's really, that's really something

Johanna 1:07:22
want p to be alone in the world after my Can I work on? So I really felt like it was important to have siblings. I felt like having my twin. And growing up with siblings was a really wonderful part of my life. And I'm still very close to my twin. And I wanted that for her. Yeah. And, and the twins are amazing. Like, but definitely, you know, a very different experience than having P just twins in general.

Scott Benner 1:07:54
Does your twin have any of the medical issues that you have? No, no,

Johanna 1:08:00
no, no, her kids don't have Down syndrome. They're, you know, totally healthy.

Scott Benner 1:08:05
Her name is lucky because that we call her

Johanna 1:08:10
her name is Meghan. Okay.

Scott Benner 1:08:11
Every time you see her, do you look at it go you mother. Okay, all right. Fair enough. You seem like a decent person. That's what I would do. I'd walk right. And I'd be like, Oh, there's the one that just didn't get any of the stuff. No, no, that's, again, almost mostly joking. Okay, so I feel like we're done. Let me let me tell you right now, because I know you're you're very concerned about I've made a note every time you use PS real name. Every time you cursed. You know you said once once. That's right. You did. I was I was like, Oh, she is Canadian. As soon as that happened, and use your husband's name, do you want that out? Or is that okay? Oh, that's okay. Okay, great. I can't thank you enough for doing this. It's my pleasure. And thank you. Yeah. Do you actually listen to the podcast? Or are you just doing this?

Johanna 1:09:08
I do. So strangely enough, I did not listen to podcasts until he got diabetes. And then I found your podcast within days of her diagnosis. And I listened to obsessively and it's the only podcast I listened to. So I probably listened to hundreds of them now, but I really do find value. I love both. I love both listening to people with diabetes and their lived experience. And I really enjoyed listening to the parents as well. So I liked that you have both on there because I think they're both valid experiences. But yeah, I really enjoy it.

Scott Benner 1:09:46
Isn't it a strange strange thing that the sentiment I can't it's lovely if you to have parents and adults with type one diabetes on the same type one diabetes podcast. Isn't it odd that that's just obvious to me? People sometimes, you know, like or, like, you know, I, somebody's only type two once and I got a note, never have people with type two on again. I was like why this is a podcast or type bonds? I was like, No, that's not what

Johanna 1:10:15
your podcasts you can do whatever you want well,

Scott Benner 1:10:16
so I can pretty much do whatever I like. Yeah. And by the way, I always think this too, it's free Shut up. Just Just so everyone knows, any of your feedback that comes in my first thought is, hey, it's free, shut up. And then I go to your actual the substance of what you've said. But you so i, and this podcast brought you into the world of podcasts. You did not listen to any and now you listened to many.

Johanna 1:10:44
Well, I listened to yours. Listen to any other.

Scott Benner 1:10:49
When you said hundreds you might you've listened to hundreds of mine. Yes, hundreds of years. So I thought well, that's better than what I thought I thought you might you're listening to other podcasts and I was like, No way from the time you can listen to mine. So I'm not thrilled about that. But

Johanna 1:11:02
no, no, I listen to your episodes. Okay. Yeah.

Scott Benner 1:11:05
Well, then that's the review I want from you on Canadian Apple Music, the only podcast I listened to.

Johanna 1:11:12
I didn't review at one point. I don't remember what I said.

Scott Benner 1:11:15
Oh, that's very nice. I am going to turn it into a t shirt and consulted people the only podcast. Anyway, thank you so much for doing this. Would you hold on for one second for me? Sure. Thanks.

Huge thank you to one of today's sponsors, G voc glucagon, find out more about Chivo Capo pen at G Vogue glucagon.com forward slash juicebox. you spell that GVOKEGL. You see ag o n.com. Forward slash juicebox. And don't forget to check everything out at juicebox podcast.com. And if you're going to support the sponsors, please use my links. They're available in the audio app you're listening in right now in the show notes of those apps, and at juicebox podcast.com. Or just please take the time to write them down and type them into our browser. It really does help the podcast. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

#951 Suck it Out of My Thumb

Shirley has type 1 diabetes and the Medtronic 780G

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends and welcome to episode 951 of the Juicebox Podcast.

Today I have a return guest surely is back from Episode 414 Durbin Shirley. As you may have heard with the Durbin surely is from South Africa. And she's on today to say hello and talk a little bit about her Medtronic 780 G. While you're listening today, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. Want to save 35% off all your comfortables your towels, sheets and clothes you can at cozy earth.com When you use the offer code juice box at checkout. If you're going to check out ag one, use my link drink ag one.com forward slash juice box if you'd like to save 10% off your first month of therapy. Go to better help.com forward slash juicebox with my link, you will save 10% off your first month. All right, everybody Shirley's got a cool next and get excited this episode of The Juicebox Podcast is sponsored by Dexcom, makers of the Dexcom G six and brand new Dexcom G seven continuous glucose monitoring systems, learn more and get started today@dexcom.com forward slash Juicebox Podcast is also sponsored by Omni pod. Now you know Omni pod has the Omni pod dash and the algorithm driven Omni pod five, learn more again and get started today at Omni pod.com forward slash juicebox.

Shirley 2:09
So hi, my name is Shirley. I am from South Africa. I'm a type one diabetic. I've been diabetic for 19 years.

Scott Benner 2:17
19 years. How would you say were?

Shirley 2:21
How old am I? I'm 39.

Scott Benner 2:23
Oh, you didn't say how old you are? Trying to get away with that. Did you surely?

Shirley 2:28
No, no, no.

Scott Benner 2:31
39 is a good age.

Shirley 2:34
Getting there getting a bit older

Scott Benner 2:36
is getting where it's getting too good. Or it's getting the

Shirley 2:40
Oh, it's just getting too older.

Scott Benner 2:44
Weather your knees start to hurt. That's a fun one. For your shoulders. You're like why don't my shoulders ache? That's ridiculous. And you realize your body wasn't meant to live this long. And you're like, Oh God, I'm gonna have to get like a knee replacement or something.

Shirley 2:57
Yeah, getting to where you can't get out of bed easily anymore.

Scott Benner 3:01
Yeah. And you don't see any reason to go like, you know, I've done everything. There's nothing left. What am I going to do? The thing I did yesterday? Didn't already. I'll stay here. Anyway, so you've had diabetes for 20 years. And you live in South Africa? Interesting. Yes. Do you've been listening to the podcast for a while? Haven't you?

Shirley 3:22
I have Yes, I have.

Scott Benner 3:23
How long do you think?

Shirley 3:26
Um, probably a couple of years. I mean, I don't know. Exactly. Couple of years.

Scott Benner 3:32
Okay, look at you. You're like if I measure the time, I'll know how old I am Scott, so I can't do that. Well, what was it like being diagnosed? That? Who? 19 That seems like your crap.

Shirley 3:47
No, I was 20. I was 20 already. Okay.

Scott Benner 3:51
In university. Yes. Were you literally there when you were when you figured it out? Or were you home? How'd it go?

Shirley 3:59
I was there but I was only I mean, I went to university, like about an hour away from home. So it wasn't far. Yeah. I don't know. I kind of walked around for about two weeks before I went to a doctor to figure out what was going on. But it just had like all the classic symptoms this tiredness, blurry vision, I stopped going to lectures because I couldn't see anything. Yeah. And then I went to the doctor was very straightforward and simple data, my blood sugar, said I had diabetes. I was admitted. I think for about a week, maybe less. I can't actually even remember. And then I carried on with my life.

Scott Benner 4:46
What in those first couple of weeks for all these things were going on? Can you just give me if you can remember. It's been such a long time ago. Surely, if you can, you can remember what I mean those are You listed a number Things that would send me to the doctor. But why does it take two weeks?

Shirley 5:04
I don't know, I suppose. Lucky young. And I don't said they had no reason to think I was had diabetes. Yeah, like that didn't cross my mind at all. And then eventually, yes, my mom did come to fetch me. I said I needed to go to the doctor. So she came and actually fetched me. And y'all, we went to the doctor, our usual lack of what we call our GPS or general practitioner. So he had been our family doctor for many years. And he did a finger prick immediately. And yeah, it was straightforward. You have type one diabetes, there wasn't any lack of listen to a lot of people that have like a misdiagnosis or something like that. But it was a pretty straightforward, easy cut and dry. Yeah, type one diabetes diagnosis,

Scott Benner 5:58
I must be a baby. I'll tell you I looked up at the sky one day saw some like floaters in my vision. I was at the doctor. Four hours later.

Shirley 6:08
I just thought I needed glasses.

Scott Benner 6:14
My knee hurt. And I tried my best for two weeks to rehab it. And when it didn't get better, I went right to a surgeon and got it fixed.

Shirley 6:23
Thank god like also to be honest, the increased thirst started like after being out for like, going out with my friends and drinking. So I thought I had a hangover. I say you were the very first when I first got the increase, like thirst I didn't really like. Yeah. But also no reason to think I would have had diabetes as well. So no,

Scott Benner 6:50
of course not. But is the detail that's missing in this story that you were drunk for those two weeks?

Shirley 6:55
Not the entire two weeks before the first started.

Scott Benner 7:03
Gotcha. All right. So I mean, you sound pretty. I don't know relaxed about it, I guess. So you just head back to school and begin but 20 years ago, what did that mean? You were shooting twice a day?

Shirley 7:18
No, I had Lantus and Nova rapid Oh, wow. Cool. Humalog whichever one I had, I can't remember. And a glucometer. And that was it. Were you. Go ahead. Sorry.

Scott Benner 7:34
Were you counting carbs?

Shirley 7:37
Yes, so I'm actually a dietician by profession. And I was in my second year, becoming a dietitian. So I had some knowledge. Not all

Scott Benner 7:51
of that knowledge helped you and you were drinking directly from a keg surely.

Shirley 7:56
That was before my diagnosis changed. I changed. I stop drinking. Well, did you? Pretty much. Well, I didn't drink in any great amount after that. No. You know, I'm very responsible.

Scott Benner 8:11
Have you always been? I think so. Yeah. Do you know Arden is now a college like maybe five weeks now? Right. I

Shirley 8:19
listened to it. Oh, before she lost? Yeah.

Scott Benner 8:24
But so if the boys are starting their swarming, you know what I mean? And, and she's, like, knocking them back mostly. But she she texts, she texts me one day, and she says, this boy, came up to me in class. And, you know, I didn't know what he wanted at first. And I realized, you know, he was hitting on me. And then he asked to walk me back to my dorm. And I said, No, thank you. And then he said, Well, we're in the same dorm. So I'm just going to walk with you. And she's like, you really don't need to. And then he did. And, you know, in the course of the walk, he offered her drugs to that as as an enticement to date, though, do you know what I mean? Like, like, imagine if a man came up to you and said, Surely Will you marry me? I have a home and you'd think, oh, okay, well, I might have a home then if I married this man, if I don't have my own home. He was like, Well, you go out with me. I have acid.

Shirley 9:21
That's not a good idea.

Scott Benner 9:23
Come on. First of all, Ethan, your boys don't know what they're doing.

Shirley 9:28
But But I would stay away from that. Let me

Scott Benner 9:30
let me tell you, I told you the story. Because she says to me, I don't need that problem. I have enough trouble with my health. And I don't want to drop dead because I don't know what I'm doing. And I realized, I don't know if Arden doesn't want to do drugs or she doesn't want her blood sugar to get low. I can't tell the difference. But you know, but she was just like, she was like that was She's responsible. She is but how does that even happen? I don't know. But

Shirley 9:57
like diabetes for a long time. So I say Think back as much as parents do stuff with children diabetes, that you do have a sense of responsibility that other people don't. Right. No, it's

Scott Benner 10:08
interesting. Yeah. Yeah. I mean, listen, without the diabetes. She still thought it was a weird.

Shirley 10:14
Come on don't yeah, that was a weird. Yeah.

Scott Benner 10:17
Let me tell you the rest of it. He waits like a week and tries again. And she says, You know, I'm still not interested, but thank you. And he goes, I guess I'm gonna have to get used to or it goes, I think I'm gonna have to lower my expectations. And she goes, Yeah, that'd be a good idea. So, anyway, anyway, so you're back at school, but you're in your nutrition mind now. And you take things. Seriously, it sounds like so management back then. No CGM, obviously, do you know how it was going? Do you remember a one CS at the time?

Give me a moment of your attention and then I'll get you right back to surely Dexcom makes a continuous glucose monitor. Do you know what that is? It's a device you were that can tell the speed, direction and number of your blood sugar. So if for instance, while I open my phone, and I'll look at Arden's blood sugar on her Dexcom it is actually two o'clock in the morning right now because I procrastinated today and Arden's blood sugar is 98 it is stable, it is neither rising or falling. I see that on my iPhone, the number, the arrow, which tells me she's stable. It's beautiful. Do you understand what I'm saying? Do you? Where is art right now? In our bed, I think, but I still can see your blood sugar. I'm not in a room. I'm not calling her on the phone. Because you can share blood sugars with up to 10 followers with a Dexcom dexcom.com forward slash juice box. You can also set alerts for instance, Arden's low alarm is set at 70. Her high alarm is set at 120 that's on my phone, on her phone. Her low alarm is set at 70. Her high alarm is set at 130 little beep when you hit that number, he gets to that threshold and let you know oh gosh, I'm going up or I'm going down. How does it do that? The beeps have different tones. You'll learn them. b b, high B BB low. How do you know that? I know that because I've been using Dexcom along with my daughter for so many years. And I really think you would love it. Dex comm.com forward slash juice box links the shownotes links at juicebox podcast.com to Dexcom. And my next sponsor, Omni pod Omni pod.com forward slash juice box. You get two great options with Omni pod. You want to kind of go old school, get the Omni pod dash put in your settings, you make all your decisions. Or check out the new Omni pod five. It's an algorithm. It works with the Dexcom G six right now. And it's terrific. You put in your settings, but then you start telling it hey look, this is how many carbs I'm having it says this is how much insulin I think you should have. And it just kind of does it. It's redonkulous. And then if later it thinks you need more insulin, it gives you more if it thinks she needs less, it takes it away and tries to stop low blood sugars. Omni pod five is absolutely terrific. Whether you want the Omni pod dash or the Omni pod five, my link is the way to go. Omni pod.com forward slash juice box you're going to learn everything you need to know there. You can get started, ask for I think you can ask for something. There's is a bunch of stuff you can do on there. Just go check it out. It's fantastic. Absolutely fantastic website. You're gonna see my face when you first log on. Just ignore that. Don't let it scare you scroll right down and get to that good honoree pod information. Once again, when you use my links, you're supporting the show and helping to keep it free and plentiful. And I really appreciate that. Omni pod.com forward slash juice box dexcom.com forward slash juice box Use the links support the show. Let's get back to surely I eventually am going to ask her about sharks. And at some point I'll explain this stupid title this episode

Shirley 14:28
I think in the beginning, like pretty good in the sixes I mean, I suppose I don't know maybe I did have a bit of like a honeymoon phase. Um, I think the highest HBA ones see since diagnosis has been about 9% around 9%. Okay, and that was before I went on to a pump.

Scott Benner 14:50
How long were you injecting?

Shirley 14:54
Um, I'm trying to think because I've been on a pump for 11 yours now so on Yes, I just Yeah.

Scott Benner 15:05
fair amount of time. And yeah. What were pumps not available? Were you just not interested?

Shirley 15:13
I'm thinking the beginning they weren't available or if they were not very easily or they still not very easily available here. But not something that was really maybe promoted much. And then for a little while, I didn't want to pump. And then I changed my mind. And I got one. Yeah.

Scott Benner 15:35
Okay. And not want one because of it being stuck? Or that kind of thing? Oh, maybe

Shirley 15:42
I think this is just maybe just the unknown. It's not something you used to. So yeah,

Scott Benner 15:48
I think you I don't know, maybe a couple 100 People might be lifting in Africa. But that's about it. There's not South Africa, excuse me, there's just not a ton of listens down there. But there's a lot more than I thought there would be. So I

Shirley 16:04
think there are a few people I know if one or two people that listen. Yeah, that's interesting. Do you tell people to listen? Do you think? Yeah,

Scott Benner 16:12
do you think that? Will your let's say based on your diabetes and your background, like your professional background? We have every I don't know, 10 people you approached and say, Hey, this is a way to help yourself, blah, blah, how many of them? Do you think actually? Or like, leave me alone? And how many of you think get interested in go try?

Shirley 16:35
What to listen to the podcast,

Scott Benner 16:36
not even the podcast, just the idea like bettering themselves. I've

Shirley 16:40
just it's so I mean, we have like a, like a different sort of, I don't know, what would I call it like setting. So like, I work in a public health setting. So government funded setting government hospitals, where they barely have access to anything. So it's very difficult for me to give the knowledge I have and for people to use it effectively. Because they don't have a lot of access, they only have access to the, like, the mph and the older insulin, so like, you know, what, what would you call them? Like you're human, aren't in etc. And if they get test trips, it's 50 a month. So yeah. So it's very difficult for them. And then also, you're dealing with a much lower socioeconomic status. Yeah. And also education levels, etc. Can be lower, just depending where you are. So yeah, it's sometimes I think the information I give him a professional setting is very basic, and just trying to get people the basic knowledge that's needed.

Scott Benner 17:55
Right. So the goals are different because of the scenario. Yes. Yeah. Sure. How long has it been since you were on the podcast? Couple years? Yeah, thanks. Yeah. I'm gonna figure out what episode you were on and tell people before because we talked about this a lot more and

Shirley 18:10
yeah. So yeah, it's just different settings sort of thing. So

Scott Benner 18:14
you're here today to talk about on the pod five, right?

Shirley 18:18
No, no, no, we don't have Omnipod. So the the Medtronic, seven ATG. Oh, my God, I'm looking at the wrong not available.

Scott Benner 18:28
Sorry. I'm looking at my wrong notes. I'm like, how is she getting on the pod five. And then I realized that was on yesterday's notes. Sorry.

Shirley 18:36
No, no, no. We don't have Omnipod at all here. That's not an option for us.

Scott Benner 18:41
So you're using Okay, Jenny and I just talked about this the other day. Sorry for that was fine. Medtronic seven. ATG? Yes. That's the newest algorithm pump from Medtronic. Right. And it's already available. Overseas from the US, right. It's not available in the US yet, I think.

Shirley 18:59
No, no, no. Okay. So it's available in Europe, UK, and we have it I don't know what your other countries

Scott Benner 19:05
Gotcha. Okay. So how long have you been wearing it for?

Shirley 19:09
I have had it for about 18 months now. Okay, great.

Scott Benner 19:12
That sounds good. Long time for us to talk about before that. Did you have the seven seven Digi?

Shirley 19:18
No. So before that, I had an accucheck pump which was just a pump not algorithm based. Nothing, right. didn't connect to a sensor or anything.

Scott Benner 19:28
So this is your first your first algorithm. Yes, Shirley's first algorithm.

Shirley 19:34
First algorithm.

Scott Benner 19:36
I'm just saying it's possible that we're going to name the episode that and so, alright, so you're using if you're using the seven ATG, then you're also using their CGM, right? Yes. What is that called?

Shirley 19:48
I am using the Medtronic Guardian three guardian. Yeah, Guardian three. There is a guardian for but I don't use it. for

Scott Benner 20:01
religious reasons rarely or what why

Shirley 20:04
I had to travel with it, it just did not work very well for me. Oh, just my personal experience with it was not very good.

Scott Benner 20:12
Well, we're just, we're just looking for your personal experience. So the Guardian three is working well for you. And by working well for you, you mean, it's giving you results that match your finger sticks and things like that?

Shirley 20:25
Yeah, I'd say most of the time. I mean, there are times when it's a bit off, but, I mean, it's they are sensors, they're not always 100% accurate. Or the, you know, there's the whole debate on that. But yes, most of the time, I get pretty, like good readings with it. Okay,

Scott Benner 20:43
and it speaks to your pump piece. And what is the Do you know, I guess for for just for context, I guess I'm the Pudge target range is as low as 110. Tandem control IQs 112 and a half, do you know what the one with the target is for the seven ATG?

Shirley 21:04
So the seven he is the lowest is 5.5. So sorry, I'm in millimoles. It's 5.5. Or you can do a 6.1 or a 6.7. Okay, hold on. I think that's lower than Omnipod. Five, I think it's 100. I don't know.

Scott Benner 21:21
Five point. I have a little calculator here on my website. 5.5 is like 99 100. Yeah. Okay. So that's the lowest that will target. Yes. Does it have any luck keeping you there?

Shirley 21:36
Obviously, it doesn't keep you there throughout the day, right.

Scott Benner 21:40
That's what it's targeting. But I mean, most of the time, do you feel like you're? You don't I mean, do you feel like it's working? Yes.

Shirley 21:46
Or like I think LACMA. So I mean, it works. Obviously, time and range, it just works on the international consensus of the fingers that 3.9 to 10. I spin. If I look at like my 14 day average, I'm always above 80%. Time and range.

Scott Benner 22:04
Well, what's your range you're shooting for?

Shirley 22:07
So I've been I don't change it. So the algorithm and it, it looks at the range of 3.9 to 10. millimoles. Between that, yeah. Alright, so between that I'm sitting above 80%. Time and range. Yeah.

Scott Benner 22:23
So 70 and one ad, it's what it's shooting for people who are listening to the millimoles and are like, I don't know what she's Yes. Or for the people overseas for like, Finally, somebody speaking in Milan. Which I get a lot about people like, can you translate them on the fly every time people say a number? And I'm like, No, I can't imagine if the whole conversation was just me going. Okay. No, wait, no, you said 68. Hold on a second that it was like, I appreciate that. That's what people would like, but I can't do that. But for this, I wanted to make sure we understood. Okay, so you're staying in that range? 80% of the time.

Shirley 22:58
Yeah, but 80% How about loads and cups? Knows what what range I've set up? Or like, how often am I low?

Scott Benner 23:07
How often are you low?

Shirley 23:09
I'm authentic about any loads today? That counts.

Scott Benner 23:18
There's someone who's had diabetes for a long time. So far today, it's been fine.

Shirley 23:24
I'll have a look at my average cookie. So my seven day average, I had 2% lows. That's terrific.

Scott Benner 23:35
All right. Yeah. Yeah, really? Well, it's wonderful. And this is I'm pulling up a picture of it. Right now. Okay, so this is the tube pump. It's kind of small. It's reminiscent of a lot of older pumps. As far as the size. You got a screen on the front. The CGM is on the screen of the pump. I imagine.

Shirley 23:56
The dots uh, yeah, yeah. And then there is an app for your phone that like, it's the app. Currently, it's not very functional. Just, it's like a mirror of the screen. So you can bring up your readings onto your phone instead of taking your pump out.

Scott Benner 24:14
So you can kind of look at what's going on in the phone. But you can't make any changes. There's no phone control at this point.

Shirley 24:20
No, not at this point. All right.

Scott Benner 24:25
You like it?

Shirley 24:27
Yeah, I'm like, I'm quite happy with it. I think it's going pretty well. I mean, obviously, there's always things that you think could be better or could be changed. I'd really like phone control. I'd like to be able to Bolus from my phone. But that's not there yet. So

Scott Benner 24:45
that yeah, that was the driving factor in Arden asking me to go back from Omnipod five to loop. Oh, really? She's like, I don't want to carry color and I want to use my phone and I was like, okay, yeah. It was a big deal to her. Actually, and they are

Shirley 25:02
that is like, really something that I wish they would bring out.

Scott Benner 25:06
Yeah, no kidding. How was it? Like not speaking about the not speaking specifically about this pump, but about algorithms in general? What was it like adjusting from a regular pump to this? Like, where did you find yourself tripping up? And what did you like immediately.

Shirley 25:26
Um, I don't think I had like a huge adjustment. So when you start the pump, it's like a similar, I listened to your Omnipod, five episodes, it's pretty similar. So you wear it in what they call manual mode for 48 hours. And it I don't know, collects its data. And then after 48 hours auto switch into what they call smart guard, which is the algorithm based mode, it switches into that. I didn't have a lot of changes. I know when I set it up, they said my carb ratios might need to be changed. But I haven't felt like I've needed to change my carb ratios. And I think, yeah, I think my settings were fine. And then once it's in the smart God or the algorithm, it controls your basil. So you don't have any input into that. It learns you over time and does the basil. And then it does auto corrections as well. So when it's does auto corrections automatically, so I don't have to use the pump or anything. It automatically will correct when it feels it needs to. So I don't feel like I've had to do much. Went out since I switched over.

Scott Benner 26:45
We did autocorrect is it moving up basil? Is it making a Bolus? How does it handle that?

Shirley 26:51
It makes a Bolus. Okay, so, I mean, they're generally pretty tiny. boluses to like, point two point 3.5. Yeah, just depends. But yeah, it it's made, but there's like a little Bolus

Scott Benner 27:07
RT in sec right now. And we've kind of cranked up the loop, you know, and, you know, told it to work at a higher percentage, like basically just told the whole, you just override it and say, Look, do everything at 140% of how you usually do it. But it's still like, you can see it weights work in a TAS off trying to hold her blood sugar down because she's sick and has her period at the same time. And so yeah, it's just auto Bolus. And these little Bolus is like every five minutes like, here's a little more, here's a little more, here's little, it just keeps happening. It's fantastic to watch. Because you realize that without this thing,

Shirley 27:43
you'd be watching it doing that, yeah,

Scott Benner 27:45
your blood sugar would be going up. And then you'd be like, oh, yeah, all right. And you try it again. And you know, it just, you know, where you'd be without it. So the reason I asked about your transition, is because many people will fight the algorithms in the beginning, like their experience. You know, managing insulin manually, doesn't mimic what they see the algorithm doing. And they they have a hard time just letting it do it. And I doesn't sound like you have that problem,

Shirley 28:15
though. Yeah, like, I think I had to have that mindset though. The when I started using it that I had to like just when I started it, just let it do what it needed to do, and not interfere with it. But I can see why. Yeah, I understand why people will do want to interfere with it, because you do things in a certain way. When you manage manually. Yeah. So I do understand why people do want to like, interfere and adjust things and change things and all the rest. But I think if you're going to use an algorithm or pump with an algorithm, whichever one you use, I think you do have to just like let it do its thing as much as possible.

Scott Benner 29:01
Do you have access to what it's doing? Can you like visually Have you seen people using loop for instance?

Shirley 29:09
Y'all have kind of seen people using loop I haven't really gotten much into it, but I've seen on I've seen it a little bit so like What do you mean in terms of access of what it's doing? Like what

Scott Benner 29:18
yeah, like being able to see the Bolus is and where it takes away bays Lord gives extra basil. Do you like visually see that?

Shirley 29:25
Yeah, so it's on the screen. So like whether I look at my phone screen on the app or the pump, so it has it basically just has like purple lines, which are the Basal insulin so you can see where it stopped Basal etc. And then it'll have like little blue lines, which are the auto Bolus as it gives when it feels it's necessary. Gotcha. So you can see, I mean, you can't see you can see what the auto Bolus was like, how many units the Basal you can't see how much it's giving. Okay, I guess Tom,

Scott Benner 30:00
I find it so valuable to watch it happen. That's why I was wondering. And

Shirley 30:06
yeah, it is. It's very relaxed, interesting. Like, you'll see like, for a whole hour or so it doesn't get any basil. And you just sort of fun. Yeah, just carries on.

Scott Benner 30:17
Yeah, yeah, no, it's like, you can see like, on for loop, for example, like you, it's like if you're going to be low, and we're going to try to stop this. And, you know, I kind of, I kind of go back and forth between the apps and I look at the Dexcom line, I'll text art, and I'll be like, Look, the algorithms trying to stop below like an hour from now, it looks like it's gonna get it, or it doesn't look like it's gonna get it. And then, you know, like, 15 minutes before it's gonna go bad. If it's going to go bad. I'll text her and be like, Hey, this isn't like, look at this line. Like, really look at this. This isn't stopping. Like, if you put some carbs in here, you're gonna, it'll be like throwing a parachute on the fall, and you'll be able to bring it in. And it's just so it's so incredibly valuable to be able.

Shirley 31:02
It's very interesting to like, see how it. Yeah, takes away and gives and yeah.

Scott Benner 31:08
So the reason and the initial reason I asked about Liz, because oftentimes, it freaks people out when they put a Bolus in for a meal. And then they see the algorithm take the basil away. Yeah. And then that either works or doesn't work. But I'm imagining, tell me if I'm wrong. Based on your, your background, you probably eat fairly well, right? Like, reasonably clean, you're probably not eating a ton of carbs or processed food. am I guessing, right?

Shirley 31:39
You're like, I mean, I don't I don't eat a lot of processed food. I do eat carbs. But like, I suppose it's other forms of carbs. So if reasonably well, the days that I do eat other things that aren't great, but most of the time, I'm eating pretty well. Do you

Scott Benner 31:57
see that difference? Like a Bolus that doesn't spike is more attached to cleaner food than a Bolus that does end up spiking?

Shirley 32:06
Yeah. So like, I mean, I don't, I don't enjoy, like, I don't know, like, take away foods and stuff like that. So but if I do eat that, you can see the difference. And like, you need a lot more insulin for a lot longer to try and get your blood sugar's Yeah, well keep them in range. Yeah,

Scott Benner 32:25
we're fighting right now the one thing that I did not anticipate when Arden went to college, I mean, of all the things that we prepared for was that the food in the cafeteria would be crappy.

Shirley 32:36
Yeah. Can you imagine? And it's

Scott Benner 32:39
funny, because the cafeteria is beautiful. And the service is beautiful. It's set up beautifully. And they appear to have a host of offerings from, you know, salads and vegetables up to French fries. And but I don't know, like what's going on? Like, I don't know, if they just sprinkle like high fructose corn syrup on everything, or like, I can't tell what's happening. But but you know, art and, you know, art an eighth very, like very well at the house. And then, you know, she get carried out food sometimes. But it wasn't every day and we knew how to handle it. But at college, it's like every meal feels like takeout food. Yeah, I

Shirley 33:19
think like especially like us like institutionalized food. I think that's like, often the preparation. It's probably like quite high in fat where you don't realize it. Like, I don't know, I feel like it still can be like more like fast food than normal food that you prepare at home.

Scott Benner 33:38
Oh, I think so too. I'm like, she said, she told me. She does. I think these people found a way to make broccoli bad for you. And I was like, gotcha.

Shirley 33:49
Yeah, I mean, there's a huge difference in like, just making your own food at home versus buying everything.

Scott Benner 33:57
Yeah, no, it's it's just it was instantaneous, obvious. And it's proving out every meal. So it's just, I don't know what to do about it. I mean, she's not going to not go to college. And she's a freshman. She doesn't have a car with her. And even if she did, I mean, what am I going to do? I'm going to ask her to, you know, become a sous chef. You know what I mean? Like, I don't know.

Shirley 34:18
I'd maybe she'll like, I don't know, I suppose over time, you'll adjust to the different the different options and the things she chooses. What she eats there.

Scott Benner 34:30
Yeah, I have I have gone like, Hey, are you the other day? She wouldn't even tell me what she, she. I was like Arden, do you need help with this? And she goes, I'm fine. And I was like, I don't know if you've seen your CGM, but I don't think you're right about that. And she's, she's like, I've got it. And I was like, Okay. And then later I said, Hey, if you just tell me what you eat, I might be able to help you with the Bolus. And she just didn't answer me. I was like, Oh God, I wonder when she

Shirley 34:56
Yeah, I suppose like it's also that time when you go away from home and you kind of Just like, you want to do your own thing. And yeah, I don't know. I'm sure we'll have times like, yeah.

Scott Benner 35:08
And I'm fine with that. And we're doing a good job of keeping a balance of like, I'm not upper but constantly, I kind of choose moments where I'm like, you know, now I think I should say something or, you know, like, I'll say to Kelly, I'm like, you know, her blood sugar has been like, 170 for three hours since she ate like, I'm gonna, I'm gonna text her. And like, Hey, have you looked at your blood sugar? I'm doing my homework. And I'm like, Okay, you could probably still look at your blood sugar while you're doing your homework. And then she, she looks and she's like, I'll take care of it. I'll take care of it as her favorite phrase. Like the other day, she said, she said, Dad, I've got it. And I answered, I was like, both, you know? Like, we're not gonna lie to each other here. Like, this is not going well. Like, let me help. And then she, it's funny, she got a cold, like she's real stuffy and doesn't feel well. And as soon as that happened, she's like, she's not very receptive to me helping again.

Shirley 36:04
Because she's sick. So she needs her parents think she's sick.

Scott Benner 36:08
She's like, Oh, I'm in over my head. I'll let this old guy text me. I sent her a text the other day and I said, you know, there are people who would pay me for this advice. And you're not taking

Shirley 36:22
I mean, I must say like so with with the 780 G. I don't really get sick often. So I haven't really been sick. So I haven't noticed you're like I haven't been sick. Sick. Weird would affect my blood sugar's. So I don't know how it copes when somebody's really sick. Yeah,

Scott Benner 36:41
yeah. She's like, I don't even know how I got sick. She's like, No one else is sick. Just me and Arden doesn't get sick frequently at all. Obviously, you guys have super immune systems, it's hard to get use.

Shirley 36:53
You're like, honestly, like, I don't get, I don't get sick. Often. I also work in a hospital. So I'm exposed to so many things that I think my immune system is just constantly working.

Scott Benner 37:03
Yeah. Plus, it was strong enough to beat up your pancreas, it could definitely take your call. Right? Exactly. So, okay. Well, I just want to tell you, not that you care. But I imagine that people of Medtronic are thrilled that we're talking about this, like they're like, Finally, this guy,

Shirley 37:19
same. I don't think same like they, they don't give much air on your show.

Scott Benner 37:25
You know, you know, what's funny is that people don't come on like, I listen, I don't know why, obviously, maybe people are drawn to the show who use certain stuff because Arden uses it. I have no idea. But specifically like outside of the show, like inside of the show, like you and I'd have all these conversations in the world. I wish people more people would contact me with them. As far as ads go, I have like a non like I have a non compete with people that I signed stuff with. So if you come to me and you're like, Charlize, like I'm a nutritionist, and I wanted to buy ads on the show, I will tell you, no problem. And part of the deal is I won't take ads from other people who do what you do. Yeah, and so. But I don't know, like, maybe I should stop being so kind, I'll stop doing that. Like,

Shirley 38:14
I think also with Medtronic, I mean, they had the 670 G, which was the first algorithm pump, I had a very brief experience with it. I did a trial with it for like two weeks. It wasn't like the greatest seven ATG is 100 times better. But I only had a very brief experience with the 670 G, so I probably shouldn't even comment on it.

Scott Benner 38:40
But you're one of the spies,

Shirley 38:42
like maybe, I don't know, maybe people are drawn to other products, because the 670 G wasn't the greatest. But it was the first

Scott Benner 38:53
one I often give algorithms. I often give them credit for being first with that, because it's a brave world you're jumping into and you're like, Oh, I you imagine this isn't gonna go great. Maybe Maybe you're saying they weren't excited to tell people about the 670 G but the 780 They're like, yes, now we're getting out there. And and now they've got it going overseas, and it's got to come to America soon, I would imagine.

Shirley 39:19
Yeah. So what are understand so they have the 770 G in America, which is basically the 670 G. But when the seven ATG is available, so the pump, you can upgrade the software. So I think it's just a software upgrade to the 780. That's interest to the new algorithm, I think, I mean, like I could stand to be corrected on that. But I think that's what will happen once they're allowed to, I don't know have the seven ATG within the USA. I think it's just a software upgrade if you're on the 770 G. Yeah,

Scott Benner 39:55
I don't know. If Medtronic is looking for some free advice from me. You might want to hire a couple of like I don't know people to sit in the room and come up with a name that that I can remember, that isn't a bunch of numbers and letters slung together. You know what I mean? Like that? Like, I mean, not for nothing. I can remember guardian. That's a, that's one like guardian. That's your sensor. I can remember that. 670 g 660 g 770 just haven't ate like, what the hell? Like, I don't know. But I do know that this one. I've heard Jenny's told me about it, too. She's like, you know, I talked to people overseas who are having? You know, some good good luck with it. With that, so where is Yeah,

Shirley 40:39
I think because also the 670 G, from what I know about it, like it had like a lot of alarms, it would kick you out of the algorithm quite often. That would randomly ask for blood glucose levels. This pump? I mean, yeah, doesn't have a lot of that. I stay in the algorithm, but like, generally 100% of the time, unless I've physically got out of it for whatever reason.

Scott Benner 41:04
Do you have do you do that sometimes? Do you sometimes leave the algorithm to be more aggressive or something like that? No, I

Shirley 41:11
actually don't. I think the only time I've gone out of it for a short while is if I haven't changed my sensor quick enough. Like when my senses expired?

Scott Benner 41:23
Oh, I see. Okay, so the sooner you're without a sensor for a while. So you just go into manual? Yeah. Okay. Well, that makes sense. So, since basically, I mean, it's a very similar experience to what I'm hearing people talk about with tandem and on the pod and all that stuff. You're having a fairly like, when you see people talking about it, you think, Oh, I'm I'm having about the same experience?

Shirley 41:45
Yeah, I would say so. I also use tandem for a very short period of time before I got this pump. So like, originally, I had motivated with my medical insurance, or tandem pump, which they wouldn't give me. And then they wanted me to take the 670 G, which I refused to take, because they were launching this one. So then they gave me this. So that's a whole different story or insurance thing. But yeah, I originally actually had motivated for tandem because I also tried that for a short period of time with the control IQ.

Scott Benner 42:17
So you were wearing that with the G six. Yeah. Dexcom. Okay. And did you like that?

Shirley 42:24
I did, actually, I really liked it.

Scott Benner 42:28
Surely shot? Are you trying to say that? If you had your druthers, you would still have your tandem control? Like you would Dexcom G six?

Shirley 42:35
Well, if it had been approved, yes, I wouldn't know I would have had it. But I wouldn't have ever experienced the seven ATG, so I wouldn't have known any better. Or I wouldn't have known anything about it. So

Scott Benner 42:46
yeah. Okay. Well, now, you know, which one do you want?

Shirley 42:51
I don't know. I think either one. Really? They both? Do a really good job. Yeah, I think either. I like I feel like the tandem pumps just a little bit smaller, which I did like,

Scott Benner 43:05
just the form factor because you're wearing it's a two pumps. So you have to carry this controller with you. Right.

Shirley 43:10
But that's the only thing like I do feel like they could really redesign the pump. It's a little bit bulky, in my opinion.

Scott Benner 43:18
What a marketing tag. It's a little,

Shirley 43:21
but other people don't have issues with it. So I don't know everyone's different.

Scott Benner 43:27
Well, no, I actually think this is I mean, I think this is exciting. And I'm enjoying hearing what you're saying. Because the truth is that not everybody can have access to one pump or the other or one CGM or the other and the more people who are using these algorithms. I think the better off you know, people with diabetes are going to be I mean, what's your excellency right now?

Shirley 43:46
6.2 That's amazing.

Scott Benner 43:50
How much effort are you putting into being the into having diabetes?

Shirley 43:56
Not like a lot. I mean, I still Pre-Bolus I've also just started using PST but I still Pre-Bolus I do all like that kind of thing. If I am eating a meal, that's pretty high, in fact, because there's no extended Bolus when you're in the algorithm when you're smart God, I do tend to do like a split boiler. So like, just remembering to give myself some more insulin about an hour hour and a half later to help to decrease that factorize later. Yeah. Yeah, I mean, I feel like a lot of people think if they put a pump on with an algorithm, they'll do absolutely nothing. diabetes, which is not really true,

Scott Benner 44:39
right. That's why I ask the question, because I do feel like this is a I mean, what would we call this right now? You know, a new day in diabetes pumping. There's so many algorithms ready now. And I do think that is what most people expect. Like there's a person in my facebook page today who's wearing it on the podcast. For the first day, their kid is I think, sort of like go on to the second day. And well, the first day was too high. And I was up all night and blah, blah. I'm like, well, they tell you that the first day, the first part is like data collection. Like, why are you? Yeah, but they're already judging the whole thing based on the first 12 hours. I'm like, Did you listen to the episode? Like I laid it all out in the episode? And the answer is, Oh, I heard it. So you heard the episode, you knew what to expect. You knew how this worked, the trainer probably told you to, and you're still upset by it. Fascinating.

Shirley 45:31
And then also, cuz I feel like Omnipod five and the 780 Ti are similar in terms of the way they do the Basal or how the algorithm does the Basal, where you kind of wearing it in manual mode for like, that 48 hours, and then it starts to do it itself. But the longer you wear it, I feel like the better it gets. Yeah.

Scott Benner 45:53
Well, that the Omnipod five is not in manual when you first put it on? Well, yeah. But it's in like a learning process. I just, I sit through a lot of trainings with lawyers. I just heard my I just heard a lawyer tell me make sure you say that. That's not true. But I

Shirley 46:11
learning basically,

Scott Benner 46:12
I took your point, just so you know, I understood what you were saying. Yeah, yeah. Right. So it's figuring things out in this first number of days, and then starting to apply it. And then I mean, Part Five is interesting. Like it takes what it what it figured out with the pod you're wearing now, and it applies it to the next one. And then it figured out what that pod experienced implies the next one again, it's, and they're all sort of in their infancy, which is terrific, because that means there's a lot of ceiling, as long as they all keep pushing towards that ceiling. Because I mean, Medtronic is a good example, right? Like you just said the seventh ADG would you say is like 1000 times better than the other one? Your?

Shirley 46:53
I feel? So yeah, because also it does the autocorrection. So, I mean, I don't have to, it just does it. So you know, I don't have to do that myself. I don't have to go into look at the Bolus, whatever it's called the Bolus calculator to see if it's going to AutoCorrect. It just does that automatically. So you don't have to think about that either. You don't have to look at your blood glucose in the garbage to see if it needs to give a correction. It just automatically does it. So I think those auto corrections on top of the basil that's been managed by the algorithm was really great as well.

Scott Benner 47:26
Yeah. Well, and listen to of all the things that it is for you. It's covered by your insurance, right.

Shirley 47:34
Well, yeah, I mean, South African medical insurance is a bit of a, it was motivated for and it took a lot of trying to get it. So I mean, I was refused the tandem based on the Dexcom cost, basically. So the cost of the Dexcom was the biggest issue. So yeah, there's no like clear. What would I say? Like no clear. Path funding? Oh, funding, there's no clear funding for insulin pumps or CGM. So they don't actually have to find it.

Scott Benner 48:11
That's yeah, but you were able to finagle this and get it through? Yes. Yeah. How much effort in time? Did it take you to get this covered?

Shirley 48:21
A lot, many months?

Scott Benner 48:25
Is that the two? Do you think other people in South Africa could achieve what you did if they knew how to go about it? Or?

Shirley 48:33
No, I mean, there's there's been progress made with some medical insurance in terms of funding sensors, they fund up into a certain amount for sensors. And they find pumps they all kind of funded in a little bit of a different way. But then the medical insurance arm with the funded mine fully, but not other people, so I don't I don't even know what they base it on. I don't know they just suck it out their thumb. I really don't know. I don't know if I just annoyed them too much that I keep on at them for like ever. until I'm happy with what I'm getting. But I honestly don't really know what basis they actually decide on their funding.

Scott Benner 49:21
Just literally just you've just beat on them until they said yes, yes. Hey, real quick match. Surely, just reading from the internet. I was born and raised in South Africa, we frequently used the term to suck it out of one's thumb implying that an answer was just a wild guess. Or the notion had no evidence, but was rather just surmise. You know, here

Shirley 49:43
I'm sorry. Is that not a term used anywhere else?

Scott Benner 49:46
I mean, I guessed what you were saying. But I think the closest thing I can think of for America would be pull it out of their ass. I guess is one that would, I guess pull it out of their ass and suck it out of their thumb. Oh, Now we're talking about thumbs and asked isn't sucking so it doesn't sound right to me, but, but I think that's a more of an apples to apples. The I didn't. I was like What did she say?

Shirley 50:08
Sorry? I didn't even think like, no, it's weird had these like different? Yeah What did they call it like colloquialism? Yeah, I don't know what it's called, in places

Scott Benner 50:19
colloquial phrases. Look at you. Oh, I

Shirley 50:22
see some stuff.

Scott Benner 50:23
I only know that word because my publisher used it on the jacket of my book. It made me. I was like, wait, what do I have? I have colloquial wisdom. I do. What does that mean?

Shirley 50:36
I know a big word.

Scott Benner 50:37
Yeah, that's where I learned. That's how I learned it. Anyway, okay. Yeah, I just imagined like, you live on a beautiful beach and there's sharks. It's pretty much what I think of where you live. I don't even know if that's true.

Shirley 50:50
I mean, I work like, pretty much on the beach. But I don't. I don't live far. Like, I mean, it's a 20 minute drive to the beach.

Scott Benner 51:02
Yeah, no, that's pretty nice, actually.

Shirley 51:06
But there's not a lot of shocks and things. I mean, now shocks

Scott Benner 51:10
walking on the beach. You know, it?

Shirley 51:13
Was this sharks Yeah,

Scott Benner 51:14
of course upright on their tails just wandering around in like board shorts and sunglasses. That's how I see.

Shirley 51:24
Sharks. I mean, obviously, there's sharks, but like, they're not like swimming on the show.

Scott Benner 51:30
What time of year is that? there right now.

Shirley 51:33
It's like spring Espace spring for you. Okay. Yeah, that's just too hot.

Scott Benner 51:39
Hot. How hot is spring?

Shirley 51:42
Um, depends on the day. I can tell you what our temperature was today. We had a high of 27 degrees Celsius. Sorry. 27.

Scott Benner 51:54
So that's about 80. Here. That sounds nice. Yeah. Warm but comfortable.

Shirley 52:00
Still a bit comfortable. The humidity hasn't hit. Yet. The humidity. Yeah, it's not as humid yet some as pretty unbearable with humidity.

Scott Benner 52:10
Surely, how is life so close to being good, then it's not nice and warm, good sun, but humid, right. Or people that get it? I mean, like lovely. But then something inside of them breaks and doesn't work. And now you need insulin to come in through a pop. Like we're always so close to it being like, this is pretty close.

Shirley 52:27
I mean, if you really want to know where I live winters the best season?

Scott Benner 52:33
Because it's not cold. Yeah.

Shirley 52:36
It's like the perfect temperature.

Scott Benner 52:38
Yeah. All right. I mean, I don't want to be like mugged by a shark. So I'm not sure what to do about. How do you leave? Very often or no? Sorry. Do you travel?

Shirley 52:52
Like elsewhere? Like what in the world? Or like,

Scott Benner 52:55
yeah, like, do you leave South Africa free with any frequency?

Shirley 52:59
Well, I haven't in the last few years because of COVID. That's a good point. No one's been going anywhere. I have been to the states, and I've been to the United Kingdom and France and Italy.

Scott Benner 53:14
Think that's all nice. My wife went to Paris two weeks ago for work and came back with French COVID. So we stuffed her into a room and did not let her out. was a shame for her.

Shirley 53:28
Shame. No, I haven't had any COVID yet. So I have

Scott Benner 53:32
not either. I'm very happy about that. My son and I were like, she's sick. And we're like, are you sick? And she's like, I think I'm sick. I'm like, Alright, so we like jam to COVID Dessner knows what we did. And we made her do it. And then she's like, Oh, it's positive. We're like, Okay, we all held our breath and shoved her upstairs. Go away. I was like, open the windows. So we

Shirley 53:53
don't feel like we do much COVID testing here anymore. Anyway, so

Scott Benner 53:58
Well, we had a couple in the house. I don't know why, honestly. And I was just like, test her. And then she I think she's must have spent almost a full week upstairs. Like I slept in Arden's bed. I texted artists like I'm sleeping in your bed. She's like, do not sleep in my bed. I'm like, too late. I'm laying in your bed right now. I'm sleeping in your bed. So,

Shirley 54:17
no, I don't feel like we do like a lot of COVID testing here anymore. I don't even think we ever had home kits. So

Scott Benner 54:24
yeah, be honest for her was not I mean, she was sick, and she was tired. And she had a sore throat. But not as bad as like, for instance, the like a friend of mine, if somebody I do work with got it coming back from Europe, I believe coming back from Europe and said the sore throat was unbearable. So

Shirley 54:45
I have heard that, is it? I mean, I think yeah, I think it's different for different people. I don't think it's as like, what would it be like as certainly not like it was a couple years was yeah, when I first started

Scott Benner 54:59
Yeah, anyway, she's fine now. I mean by fine. I mean, she lived through it. You know, they mean, the height of the illness as like how many setups that I have to do to start dating again. You don't I mean, just in case something went wrong surely. Well, you know, I'm too young up by myself, don't you think?

Shirley 55:17
Just in case Yeah, I always tell the kids what do you want to hear that? Yeah.

Scott Benner 55:21
Oh, I don't know. You think she gives us? Like she cares? Surely we were together a really long time. You don't think she's like, Yeah, if I died, I died. Get away from this guy for a little bit. Anyway, Alright, is there what else should we be talking about? About the 780? J.

Shirley 55:37
denies notice anything else you want to know? I mean, it does like the normal pump things.

Scott Benner 55:41
Yeah. Maybe you basically just came on. And we're like, hey, look, it does what you're expected to do. And yeah,

Shirley 55:48
I mean, I think I'm having a good experience with it. Maybe other people don't? I don't know. I have started using fast with it. I don't notice a huge difference with Yes. Like, I don't know.

Scott Benner 56:00
No, no. Yeah. Well, don't you think people imagine it's gonna just work like, instantaneously, instantly?

Shirley 56:04
Well, that's how it's marketed. I feel like that's how it's marketed, which is not really great. Yeah, I can say things like that.

Scott Benner 56:13
No, I agree. I like the way it worked. For Arden. Of course, she couldn't keep using it because it stung like it burned her.

Shirley 56:21
I really I didn't have I don't have that. Yeah,

Scott Benner 56:23
apparently, either you do or you don't. And I have heard some people say that. They use it and it works really well. But then it sort of tails off. And over time. You don't get the same kind of jump from it. I don't know if that's accurate. But I have heard it enough from people. Okay. Yeah. So keep an eye out for that. But yeah, I mean,

Shirley 56:47
I mean, yeah, I feel like the only other things that it really has, which most of the algorithm pumps have, but I know like, whether they call it on tandem exercise mode or whatever, like this, you can set it to target if you're going to exercise. And I think it goes to a point three, so it tries to keep your 8.3. And then it also won't give any auto corrections in that time.

Scott Benner 57:11
Yeah, yeah. That's a good idea. To my settings.

Shirley 57:15
Yeah. And then you can adjust the active incident time. So I can go as low as two hours. I think it's any for anything from two to four hours.

Scott Benner 57:24
That's interesting. You would think that that wouldn't be it's interesting that they give you access to that adjustment.

Shirley 57:31
Yeah, so you can set it as what you want. And I think when they set it up, so like, from my experiences, when they set it up to like, optimize it, they make you go to the obviously the lowest the 5.5 target range, and the to our active insulin term. I think because then it will autocorrect quicker, but I mean, I'm not I don't know, the actual, you know,

Scott Benner 57:56
I've heard a number of people who are, are involved in looping, like say, you can they now believe from watching the algorithm work that insulin is in you for six hours.

Shirley 58:10
Well, I do feel some mine is not I did have it set at two hours. And I've actually changed that setting. I think it's on three hours. Now. It's not a huge difference, but I definitely think it is there for much longer. Yeah,

Scott Benner 58:27
yeah. I mean, obviously if you make the action time shorter than the algorithm gets more aggressive, because it believes the insulin is gone sooner. Yeah.

Shirley 58:36
But then you do is you would experience like I'd then like sort of almost crash eventually. Was it will be correcting tomorrow, and then I'd obviously have too much.

Scott Benner 58:47
Yeah, two hours shocked me. I thought I thought How did you keep it at two hours? That doesn't sound like doable?

Shirley 58:53
So yeah, that you can go as low as two hours right? You weren't and it's it's a it's a setting that is adjustable by the user.

Scott Benner 59:03
Interesting so you don't get beat you don't I guess it makes it well, what I the way I was just thinking about it was like more like looping like, like, okay, I guess you could make that more aggressive and then makes some of the other settings weaker, and maybe you could find a balance there. But in the in the 780 G you have access to the insulin action time, but you don't have access to other settings. Do you

Shirley 59:25
mean like your correction, what is it insulin sensitivity factor or your correction factor that's adjustable, your carb ratios.

Scott Benner 59:37
So you, you do have a lot of autonomy inside of the algorithm to make changes to it.

Shirley 59:42
Um, yeah, it's just obviously then back when you first put it on, you have it at your set, whatever your Basal was, prior to. Yeah. And then after that, I don't I think those 48 hours is just learning and then after that, it doesn't consider that Those Basal rates does its own.

Scott Benner 1:00:03
Yeah, gotcha. So that's where there's a lot of similarity with Omnipod 512. Yeah, yeah. Because that does the same thing like you tell it on day one, like my Basal rates one. And it'll decide later that well, that's not what you need are getting out there. So I mean, it's all very exciting. Like, I just hope they

Shirley 1:00:22
can Yeah, and then I mean, it does. So like if you're out of the algorithm, so between like sensor changes, because there's a two hour warm up, plus, you got to charge the transmitter. So you have a four hour window where it just reverts to. I don't know what Basal right, but it keeps you within the algorithm, but it doesn't keep adjusting its asset base. Alright. Does that make sense? Yeah. No, it does. Yeah. So within those four hours, so if you take longer than those four hours to put out a new sensor, etc, then it'll kick you out the algorithm.

Scott Benner 1:00:54
If you take, say that again,

Shirley 1:00:57
sorry, like when you're doing a sensor change, so you're gonna have sensor readings, it'll keep you on the algorithm for four hours. But in that time, it gives like a set sort of Basal and it doesn't do auto corrections, because obviously, it has no data, glucose data feeding to it. Got it. Yeah. And then after four hours, if you haven't got a new sensor on, then it will kick you out the algorithm, then you just go back to manual, right? I didn't do setup was,

Scott Benner 1:01:26
that's how I handle artists, like, When are the changes the sensor, I'm like, just to open the loop. Because we know our settings are pretty good, and it won't auto Bolus that way. And then I just have her test, which sometimes she does, and sometimes she doesn't, you know, during the two hours, but okay, well, that makes sense. So it's using, it's using historical data to kind of float you through the sensor change.

Shirley 1:01:49
Yeah, so yeah, you've just got that, like, four hour time period. Yeah. And then at all. So as soon as it stops getting sensor readings, you have four hours before it will accept the smart card,

Scott Benner 1:02:03
and then kick you back to manual. Yeah. How long does it take for the Guardian sensor to spin up? Sorry, how long does it take for the Guardian sensor to come online when you change it?

Shirley 1:02:16
So it's, I've got a two hour warm up two hours. But the transmitter needs to be charged between the changes. Okay, so that takes about an hour. I found. Oh, I mean, that is like, like something also they could really improve on their senses. I know that is in the pipeline is a new sensor. That's meant to be I don't know when it would ever be released, but it is in the pipeline. But you know, that like having to charge the transmitter just delays the whole

Scott Benner 1:02:49
it sucks, right? True.

Shirley 1:02:53
Yeah, I mean, not that works. It's not that bad. It works. Like I mean, there's times when it's off, but I have one Dexcom. And there were times when Dex comes off. Like it's I feel like it's a normal sort of thing. Yeah. I didn't like I said, I didn't have good experience with the news. The guardian for it just didn't seem to work for me at all. I don't know what was wrong. But the Guardian three I'd say like, 90% of the time, it's doing a good job.

Scott Benner 1:03:24
Nice. That's excellent. Good. I mean, in the end, what you have is what you have you get very accustomed to it at some point. Yeah, you do. Yeah. A lot of it's just I don't know. Like, it's braids, personal preference. Like, do I want tubing? Do I not want tubing? That's a personal thing. You don't I mean, like, that's, there are plenty of people using two pumps or don't think twice about it having tubing. And

Shirley 1:03:47
yeah, I mean, like, I don't really think about it, but we don't have the option of Omnipod. So I don't actually we don't even have that option. So we have to have tubed so happy. Like, I don't even think about it anymore.

Scott Benner 1:03:58
Yeah. If it was available, do you think you'd want to try it?

Shirley 1:04:02
Yeah, I like trying the different things. I think it'd be nice to just try it. Just to see.

Scott Benner 1:04:08
I definitely I definitely feel that about you. By the way. You're very like, think you're sensible. But you're like, I'll give it a whirl. It's fine. I like it.

Shirley 1:04:16
Yeah. I mean, like, if I had Yeah, I suppose if you have access to try all the different things, I would happily try them. Like I'd wait all the senses if I could at one time just to see what they will say.

Scott Benner 1:04:28
That would be interesting, wouldn't it?

Shirley 1:04:31
So I got put this on. I've won a Dexcom and a Medtronic sensor at the same time. Just out of

Scott Benner 1:04:36
Yeah, because I had them were they close?

Shirley 1:04:40
Yeah, they were. I think I think like for me the Dexcom. What how can I say it so the initial the first like 24 hours I think it leveled out a lot quicker than a guardian does. But once they working well, they were pretty similar.

Scott Benner 1:05:01
Good now I mean, you know you would pretty far generations I mean are we're in now like Dexcom five, six, you know sevens coming soon, actually sevens available in places in Europe already. And then there's libre three

Shirley 1:05:16
good we heard we getting seven lakh next month so I don't know if we are on the Dexcom Dexcom g7

Scott Benner 1:05:24
Super interesting isn't it doesn't usually go that way doesn't usually go outside of us then us with XCOM Yeah, it's nice for you get ahead a little bit.

Shirley 1:05:34
So I don't know, waiting to see. Yeah,

Scott Benner 1:05:37
well, hopefully. I mean, I'm hearing good things about libre three from people too.

Shirley 1:05:42
Yes, that's we we still only have the libre one. I think it is. We don't even have to. So I don't even know why they haven't

Scott Benner 1:05:49
come up with South Africa.

Shirley 1:05:50
What the heck? Yeah. I don't know. How big is that? Kim that has been marketed black, quite extensively in South Africa. And a lot of people use it. So I don't know why they haven't moved on to the next generation of it.

Scott Benner 1:06:05
South Africa is only 470 Square 470,000 square miles. We can't get people libre to at least what the heck. You should start a revolution surely.

Shirley 1:06:21
I don't know why. I don't know why they I'm busy. But no idea. I don't know what like I don't know what approval they need. I don't really know all that stuff. You need to sign this off. There's not a market. I don't know. I feel like there's not I suppose we don't have a huge market because I've done a lot of people have access to ATMs. Ya know, so maybe maybe like having a libre too is not worth their while.

Scott Benner 1:06:46
Sucks. It really does. I wish everybody could have this stuff. Honestly. Yeah. Okay. Well, surely if that? If you're done. I'm done. I think this was terrific. I appreciate you doing it very much.

Shirley 1:06:58
Yeah, I think that's all I mean, I don't think there's any other. I think maybe yours was just to like, say they they have vastly improved on the original algorithm base pump. So if anybody's on the fence about Medtronic, the 780 G is a vast improvement.

Scott Benner 1:07:17
That's excellent. You were on episode 414. It's called Dark. Okay. Just think it Yeah. Yeah, I mean, listen, I tried algorithm. That's my that's my opinion. You know, really?

Shirley 1:07:32
Definitely. Yeah. I don't care which I think it would like for anybody gives a some improvement. I mean, they still input, I think people need to realize you still have to have input. But there's some like, it will improve your quality of life.

Scott Benner 1:07:49
Yeah, I see them work the best on like pre pubescent kids where there's not a lot of hormones happening there. It's pretty amazing. Yeah, you know, and then once you kind of are through your growing period, again, if you eat reasonably well, like they they work really, really great. I mean, that's the one, you know, good.

Shirley 1:08:12
I think for like females if they could, like, I don't know, somehow sink like a something play a cycle to the pump. I don't know how, I don't know how these things work. But I mean, I think that would be helpful.

Scott Benner 1:08:25
Well, surely, listen, I want people working on all kinds of things around that. I prefer. Listen, I think you should probably have like us, like a small warning light on your forehead. What do you think of that? Other people know? What's happening, you know, and and maybe they could approach you differently. For example.

Shirley 1:08:43
Yeah, yeah, maybe. But I mean, I think the pump like the pump companies need to like, I don't know, integrate some sort of Doctor somehow. Yeah, like that. It's

Scott Benner 1:08:52
like a holler button or something like that, where you go, Oh, my God. But But honestly, what it needs to know is it needs to know, the the time before the period, right? It needs to know when you're ovulating. It needs to know after the periods over like there's I mean, for a lot of women, you're gonna see almost three different insulin needs a month, don't you think? I think so. Yeah. Now well, I and yeah, no lie. Somebody should try. Like just I must

Shirley 1:09:20
be able to there's so many like tracking apps. And I don't know, you could track your period on your garmin watch. So

Scott Benner 1:09:29
there's some of those health straps are measuring like ovulation and periods by body temperature.

Shirley 1:09:36
Wow, they must be able to, like integrate, like Apple Health or something because you can track on there. I don't know. There's just like so many. But I suppose maybe it's

Scott Benner 1:09:47
I'll tell you right now get a couple of women of type one diabetes, put them in charge of these research and development portions of these companies and I guarantee you somebody will start looking into it really quickly. I

Shirley 1:09:57
feel like there must be a way to integrate it somehow. setting on the pump so that if you're female, you can switch that setting on.

Scott Benner 1:10:04
What would be very nice, because if I wasn't helping my daughter right now, illness and a period at the same time, she's only 18 She wouldn't know what to do. She'd be making herself crazy Bolus and constantly and just would never get her anywhere.

Shirley 1:10:17
So, but I mean, a lot of like, it's not only her I mean, there's there's plenty of females that don't even consider it. Well, they don't think they don't consider it, but they don't actually like, look at the patterns or look, you know, know what it is? Yeah. Well, if you don't know, like, Oh, my goodness, I'm so hard on a worm Ha, I'm like, Cool. You can track your cycle. You can? I don't know, there's a way to figure it out.

Scott Benner 1:10:41
No, no, I agree with you. I think that a lot of people because they don't know what some of the variables could be. They just end up thinking that this is the randomness of diabetes attacking them, you know?

Shirley 1:10:51
Yeah. And when it's when it's possibly not like we are in your cycle, like what hormones are being produced. So

Scott Benner 1:11:00
that's why there's a whole variable series inside of the podcast. Sure, exactly. Yeah. I'm doing my best over here. Okay. I feel attacked. I'm just getting I don't feel. You're terrific. I know. It's evening for you. I'm gonna let you go live your life and I really appreciate you doing this for me. Thank you. Yeah. My pleasure for having me. Of course, anytime Hold on one second.

Durbin, Shirley, thank you so much. And thank you to Omni pod for sponsoring this episode Omni pod.com forward slash juice box. And of course dexcom.com forward slash juice box. Use the links get started with Omni pod or Dexcom today, learn more. Check out their websites. Yeah, gotta love it. dexcom.com forward slash juice box Omni pod.com forward slash juice box. Once again, Shirley was terrific. Thank her so much for coming back on talking about her life with diabetes, her seven ATG and all the rest. I think she makes she makes me feel bad about my accent. Versus just so nice. Oh, geez. Thanks so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. I just was like talking to myself there. I forgot. I was trying to end the show.