#926 Tough to Process

Kelly has type 1 diabetes and digestion issues.

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

Scott Benner 00:00 Hello friends and welcome to episode 926 of the Juicebox Podcast. Today I'll be speaking with Kelly. She's the mom of a child with type one diabetes. And we spend a lot of this episode talking about digestive issues which is very impactful for type one, and thusly why it's the subject of today's episode. While you're listening. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan for becoming bold with insulin. Speaking of bold, managed to get yourself some great sheets at cozy earth.com Save 35% at checkout with the offer code juice box, take care of your mental health@betterhelp.com forward slash juice box and when you use that link, you'll save 10% off your first month of therapy. And of course a free five travel backs and a year's supply of Vitamin D is what you get with your first order of ag one with my link athletic greens.com forward slash juice box. This episode of The Juicebox Podcast is sponsored by ag one from athletic greens, athletic greens.com forward slash juice box you can start your day off with this same green drink that I do. The podcast is also sponsored by cozy Earth cozy earth.com forward slash juicebox the most comfortable joggers I've ever owned and sheets I've ever slept on came from cozy Earth, save 35% off your entire order every time you order from cozy earth.com When you use the offer code juicebox at checkout.

Unknown Speaker 02:10 Are you ready for me to start talking? Yeah, I'm

Scott Benner 02:12 sorry. I said do it. Did you not hear me? Oh, gotcha. Gotcha.

Unknown Speaker 02:15 Okay. Well, hi, my name is Kelly. And I'm from Oklahoma. Well, I've lived here for almost 30 years. I'm not really from here, but this is where I am. I'm a mom of four kids. I just sent my last two to college last month. So I know you're an empty nester as well. Anyway, I was diagnosed as type one at the age of 49. And so seven years ago, almost seven years ago. We have a history of autoimmune illness, but no one else had type one prior to my diagnosis.

Scott Benner 02:47 Kyle, you're 56 and all of your children are gone. Isn't that beautiful? I mean, it sounds amazing. Yeah, well, my

Unknown Speaker 02:56 oldest is 28. And my twins are 19. And I have a 25 year old daughter.

Scott Benner 03:02 Wow. Yeah. Why is that freaking me out? Give me a second. I'm doing good dentists. Two takes me to 10 and then six more.

Unknown Speaker 03:11 I was 28 when I had my first one. He's 28. Thank you.

Scott Benner 03:14 Yeah. And I was doing okay. Whoa. 20 plus 2266.

Unknown Speaker 03:18 I know. Yeah. Cool. Yeah. Well, it's.

Scott Benner 03:21 It's cool. It's pretty predictable. Kelly, and I'm not sure why I didn't see

Unknown Speaker 03:27 the math girl. So

Scott Benner 03:28 you were 28 when you had your first. Oh, yeah. Wow. How about that? Yeah, that seems so that's young. But seems late to me because of how young I was. How old were you? Oh, gosh, we'll call it 22. And I'm 51. So he was born in 2091. I was 20. Actually, what am I doing? I was 29 when he was born. So I don't know why this is striking me this way. Probably because of my loose understanding of mathematics.

Unknown Speaker 04:01 There you go. I still count on my fingers. It's good.

Scott Benner 04:04 I was just counting on my fingers just now. Kelly.

Unknown Speaker 04:07 I literally majored in math in college and I count on my fingers.

Scott Benner 04:10 Did you really what was your major? Math, just mathematics? Yes. That's hilarious. Okay. It is sunny. So you said there was other autoimmune in your family? What was it?

Unknown Speaker 04:24 Well, at the time my mom had vitiligo and then my daughter at the time that I was diagnosed, she had just been diagnosed about a year before with lupus. She was about 17 when she was diagnosed, and then I was diagnosed with Hashimotos. About three months before I started having the issues with type one.

Scott Benner 04:51 Okay. All right. So there was an How old's your daughter now? The one with lupus 25 Has that change? arranged for her it all over those years.

Unknown Speaker 05:03 Yes. So so well, you know, it's interesting because I have a son who I think has something lurking. We don't know what it is yet. It's just she flares a lot more often. She's a nurse. She's in nurse practitioner school right now. And, you know, she's just exhausted a lot. And it was she was always kind of in that way, even in college, you know, she'd get all ready to go out. And I'd be like, I can't go. You know, I mean, it really, you've heard that spin analogy, I'm sure. I mean, that really was true for her. But now, if she has a long weekend, or you know, goes too hard, she's in bed. So it's tough to be her age and be that sick.

Scott Benner 05:47 She doesn't have a thyroid issue at all.

Unknown Speaker 05:50 Nothing diagnosed, she has some food. Allergies, I would say definitely not diagnosed allergy, but like, makes her so incredibly sick. The second it touches her mouth, so whatever you want to call that. And so it was one of my son's so

Scott Benner 06:07 I get a fair amount of allergies. But has her thyroid been tested?

Unknown Speaker 06:12 You know, I do not know and I'm going to ask her that question. I would

Scott Benner 06:16 love to know that. Okay, I will find out I would like to know if her TSH is over about two 2.1. And if it is I'd like somebody to treat her for thyroid issues and consider giving her a T three supplement if the T four doesn't bring her energy back.

Unknown Speaker 06:32 Okay, I don't have her chat. Or you know, my son who has the energy issues as well. His thyroid was checking it's normal.

Scott Benner 06:40 So you have to be careful about what that means. Oh, I know. Because the doctor will tell you it's in range. But that doesn't mean anything like hold on a second thyroid. normal range. I'm googling. Yeah, it's

Unknown Speaker 06:56 like point on your TSH. It's like point three to five. It's a pretty big range their minds point four.

Scott Benner 07:03 Yeah. And then I just I don't know. Like, I think that I think that a lot of doctors do the it's in range thing and your thyroids four or five, that's not enough medication. Like you're not taking enough medication if you if you're if yours is 4.4 point for your towards hyper. Right now I am I see. So your medication is too strong.

Unknown Speaker 07:32 I don't have any medication. So that's the thing. So I was on thyroid medicine back in my 20s. And then when I was pregnant with my son, they took me off of it. So 28 years ago, I have not been on medicine for 28 years. And so that was an endocrinologist that took me off of it. And so then all these years, it was just sometimes it's high. Sometimes it's slow. I mean, I just kind of would would go back and forth. So finally got diagnosed with Hashimotos. Well, my number and every time I go is like you're in range, you're in range. Well, I have huge goiter, I've got probably 10 nodules. You know, they're like nine millimeters, eight millimeters, seven and a half. I mean, like big ones. And they do the biopsies and all that stuff, but they don't ever do anything to treat it. So used to be like point eight and like, if you look at my trend, it's getting lower and lower.

Scott Benner 08:33 And they never talked about addressing the thyroid.

Unknown Speaker 08:37 No, I mean, like guys retired, not retiring, but he's switching over to the VA and I'm getting a new one starting next month. But no, and I'm like what I've read says that it's working harder and harder and getting bigger and bigger. I look like Jeremiah bullfrog is not that bad, but

Scott Benner 08:57 like I have a bombastic picture, Scott, I'm sorry.

Unknown Speaker 09:03 It's noticeable. It's just and you know, it's getting bigger to stay in range, and it's about to pop out of range. And then I don't know what they do.

Scott Benner 09:12 Yeah, I don't know, either. But make sure you come back on the podcast after you find out okay, Kelly,

Unknown Speaker 09:17 I will do that.

Scott Benner 09:19 So alright, so you've got some sleepy kids and some kids who don't eat something's because they have bad allergic reactions. Thank you kids. Yeah, same to kids. And then you are 49 when you're diagnosed with type one.

Unknown Speaker 09:34 Yes. And I had meningitis. How

Scott Benner 09:38 do you live in a sewer system? How did you get meningitis?

Unknown Speaker 09:43 I was in Mexico and I don't really know because my I'm not married anymore. But my husband at the time and he didn't get sick. But everybody on that trip that we met you know you kind of meet people at the pool and you get to be friends with people whatever. Everybody He had something weird going on on that trip. None of it was the same, but just weird stuff that I remember. And yeah, I came back and thought it was a migraine took my medicine next day took more medicine. Yeah, took three rounds of a trip tan. And it was my daughter's graduation from high school and we were hosting a party and, you know, off I went to the party, and then it came home and started running a fever. And you know, they figured out it was meningitis. So

Scott Benner 10:25 can you hold on one second? Yeah, this segment of the Juicebox Podcast is brought to you by the Mexican travel Council. Good. No, I'm just kidding. How ironic is your problem. Now? I was just being sarcastic because oh my god, you got meningitis and Mexico.

Unknown Speaker 10:42 I know, right? Viral? nonbacterial I'd probably be dead. But yeah.

Scott Benner 10:47 Okay. Jesus. You're, by the way, if people want to sponsor segments of the podcast, please contact me. I feel like I would do. That would have been hilarious. Imagine if you're in the middle of a conversation. I'm just like, can you hold on one second? Do you need a Casper mattress? Are you tired like Kelly's daughter I Casper mattress? I could see this working please get a hold of? No. Okay, so the meningitis How long did that take to to deal with?

Unknown Speaker 11:18 Um, what was in the hospital for several days. I actually wish the er the first time. My husband at the time was like, oh, we'll just take her home. She's fine. So I came home. And then he got up, went to work the next day and get any of my meds for me. And so then I was really sick that next day and went back to the doctor, and then that's when they admitted me. I think I was there. Three or four nights. And then, you know, they sent me back home and it was okay. I mean, you know,

Scott Benner 11:52 what's the chances that your ex got either meningitis on purpose? percentage wise?

Unknown Speaker 11:58 Probably not. But okay.

Scott Benner 12:02 I like by the way, how long have you been divorced?

Unknown Speaker 12:06 Officially since February?

Scott Benner 12:08 Oh, wow. How long? Have you been six months? Were you separated before that for long? Just like three months. Okay. All right. Because I read about

Unknown Speaker 12:15 a year ago that he had, like, it was like the end of October. I was like, I can't do this.

Scott Benner 12:19 I say does that have anything to do with the health stuff?

Unknown Speaker 12:22 Um you been mean getting sick?

Scott Benner 12:28 I mean, that that? Was there something about you having issues that that impact because you guys must have been married forever, right?

Unknown Speaker 12:36 We are married 20 years I had was married previously, when I had my first two my older two kids. Okay, we married had twins. And we were married 20 years. And ya know that my health issues had nothing to do with us getting divorced, but I'm not gonna say they didn't probably lead to me. Not feeling so good sometimes.

Scott Benner 12:58 So I don't want to make you feel badly. But I feel like I need to ask you. So how would the health stuff impact a relationship? There's a good question.

Unknown Speaker 13:09 Um, I think if you are a sick person, you know, where you have a sick mentality. I think that could really wear on a relationship. You know, if you're always complaining, always tired always. You know, whatever, which is not my personality. He literally would say, I forget that you're a type one. I mean, he literally knew nothing about my really my disease or how it worked. Because I just do it.

Scott Benner 13:40 So, but you didn't feel well. And that impacted your personality. Oh, no, no, no,

Unknown Speaker 13:46 I'm saying I think that could for somebody. No, it didn't impact mine at all. No, it had nothing to do with our separation and divorce.

Scott Benner 13:54 Gotcha. Okay. Yeah. Thank you. No. All right. Sorry. I was

Unknown Speaker 14:00 No, I just raised four kids and I didn't need to raise a fifth one. You know, I kind of got tired of

Scott Benner 14:09 oh, all of us. Life is so cyclical, isn't it? Like, like, it's just it's amazing. There's a moment when just when we want to make a family, and you'll look right through things like that. You're like, you know what? This person has a job that reasonable. No one's ever hit me. He's handsome. Let's do it. And then later, you're like, all that stuff. I overlooked. I do not like this anymore. But we're raising these kids. So I'm gonna ignore it.

Unknown Speaker 14:37 I'm gonna stick it out. Yeah, exactly, then

Scott Benner 14:41 it's not uncommon. Hmm. So did did this correspond with your last kid going to college in some way?

Unknown Speaker 14:47 The twins? Yes. Well, it was it was their senior year in high school. And it was kind of the straw that broke the camel's back kind of situation. And I was like, if I don't do it now, it may not happen. I'm just gonna do it so I kind of felt bad for that or did feel bad for them because it was just senior year but I think overall it worked out well for them and

Scott Benner 15:08 Did you say something like I'm getting you something for graduation? It's extra space in the garage? Yes, exactly. We can watch whatever we want on Sundays again everybody. Super nice free. Yeah frigerators full I'm sorry for the dissolution of your marriage. I feel badly about it. But I didn't know it was good marriages

Unknown Speaker 15:29 don't end. Well, but my mind weren't great ones.

Scott Benner 15:40 Kelly, are you afraid that the next person you look at and say hey, would you like to get dinner's just like, are you not good at picking people?

Unknown Speaker 15:48 I suck at picking people. Why? What happened? Very consistent. Like I like narcissistic personalities.

Scott Benner 15:54 Tell me why. What I

Unknown Speaker 15:56 got I don't know why.

Scott Benner 16:00 So I want to try to find out together. sure that you never Googled it.

Unknown Speaker 16:09 Doing this again. So I find it irrelevant.

Scott Benner 16:11 Versus this user rate. I know what a narcissist says, Why would I be attracted to one? Oh, would you consider yourself to be strong, confident and self assured? Yes. narcissists are often attracted to strong, confident and self assured women. Oh, yeah. This may seem counterintuitive. It is important to realize that the narcissist traits of grandiosity and confidence are really a mask for deep insecurity. So they want your

Unknown Speaker 16:42 Okay, so they want to suck the life out of you.

Scott Benner 16:45 Oh, no, Kelly, that is not what this says. Now, if we're if we're believing psychology today.com, which I don't see why we shouldn't. The idea is, is that that narcissistic behavior is a facade, because they don't feel that strong. And so they want to surround themselves with people who do. It's interesting. It's interesting. Anyway, let's be honest, it's all about sex. I don't care if anybody's narcissistic or not. You don't I mean, if you're on a good schedule, you'll be okay. All right. All right. So what was it like getting diabetes at this age?

Unknown Speaker 17:31 Um, it was. It was interesting. Um, you know, it was kind of one of those things that you just do you know what I mean? Like, you don't really have a choice. I think that's the, if you want to call it the beauty of type one, you don't have a choice. But to address it head on versus type two, I think a lot of times, people talk themselves out of taking care of themselves. So you know, I kind of dove in headfirst. There wasn't a lot of education. There wasn't a podcast, there wasn't. I was on like some online forum at one point. And I think I had about an hour education at my doctor's office. I wasn't in DKA. So, you know, I actually got diagnosed at my physical. And, you know, I mentioned I'd had the Hashimotos. And I started taking medicine, and I was like, Oh, my God, I'm finally losing weight. This is so exciting. You know, and I hadn't quite put together that I was also going to the bathroom all night long and drinking a ton of water. So, you know, I kind of got diagnosed in the office, so they should have picked it up. But they didn't feel like I went in from my nurse appointment. And then that week, I lost seven pounds. So when I went back in for the follow up with a doctor, he's like, uh, you have type two diabetes. I'm like, Oh, darn. Okay. You know, I mean, I didn't know any different. And so that was for, like, a week that I thought I had type two. And I called a friend of mine, well, actually, my ex husband's in pharmaceutical sales. So he wanted me to talk to an endocrinologist that his group called on. So I called and they said, we can get you in in six months. I'm thinking, Well, we did in six months. That's not going to be very helpful. So then I called a friend of mine, whose son, and that son whose daughter goes to school with my twins, and she's an endocrinologist. So she said, well come in tomorrow. And I said, Well, I'm leaving to go out of town. So I was going out of town. I came back a week later, and that's when I saw her and the other doctor called me as I was on the airplane. And he said, You're supposed to be in my office today, but my nurse never called to tell you. So I went and saw both of them within 24 hours and had the same diagnosis from both And it was the positive ketones and I can't remember what else they use at that point. But then they ran the lab tests for the C peptide and all that stuff.

Scott Benner 20:11 So are you telling me that? You, I feel like what you said a minute ago, I want to go back to which was the because type two can impact you and kill you in the moment that it's possible to just ignore it for a while, or to not take it as seriously as you should right away, but type one demands of you that you pay attention immediately. And so you did. And so you didn't have a choice, which, you know, some people still choose to ignore it. But, but So you felt like you didn't have a choice? And is it because of that, that you have this attitude about? Or do you think it's your life experience that allows you to feel this way or because you're, you're not I mean, you're really treating it like, oh, geez, now we got to paint this room I go paint this room now.

Unknown Speaker 20:58 That's kind of how I treat light.

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Unknown Speaker 26:03 I parents taught me early on.

Scott Benner 26:06 Kelly we had we had a little bit of a an audio lag. I'm sorry, you. I heard you say that's how I treat life?

Unknown Speaker 26:12 It is yeah. I think I learned early on from my parents that there's just certain things you can control and things that you can't. And if you can't control it, there's no point in stressing and worrying over it. You just need to deal with it. It's good advice. So that's just kind of how I was raised that we don't you know, lament over things that we can't change.

Scott Benner 26:38 Do you have any kind of like psychological burdens from it? Like, I know you're dealing with it in the day, and you're taking care of it? You know, the light of day, obviously, but does it weigh on you in the back of your mind?

Unknown Speaker 26:54 Um, not terribly not as much as it probably should. You know, this morning at 5am. I had 41 double arrows down. That was a little scary. But no, I mean, I live alone now because my boys just set for college. And that stresses my circle out a lot. So I'm getting a service dog. Because that will make everybody feel better. I tend to have my lows more in the evenings at night when I'm home alone because I'm real active in the daytime.

Scott Benner 27:25 Buying a dog you don't want so that your kids don't worry.

Unknown Speaker 27:29 It's my mom and my best friend. No, I want a dog. I love dogs. I love them. It's a great excuse to have one. Yeah. But um, no, I just I don't worry about it probably as much as I should. I mean, I'm I don't know. I mean, it is what it is, I guess, yellow every night. No, but I played like yesterday, I played two tennis matches, and one at 10 in the morning. And then one. You know, it finished almost 930 last night and it was an hour, two and a half hour match. So, you know, I knew it was probably gonna go low. And then I didn't and I was like, Oh, just as great. I woke up it was at like 112 and five this morning. I'm like, Oh, perfect. And I got back in bed. And then within a few minutes, it was like 44 double arrows and like

Scott Benner 28:16 maybe maybe you woke up. Maybe your body felt that fall before the CGM could catch it. That has been happening a little bit lately. Yeah. So you're happening to you're falling faster? Yeah. What's your you wanna say?

Unknown Speaker 28:29 6.5?

Scott Benner 28:31 And how about your variability? What do you shoot for? What's your range?

Unknown Speaker 28:35 Well, my time range is not as good as I would like it to be, but it's like 70 to 130 is pretty much my goal. But I do have like a 40 point swing, it seems like and I'd like that to be a smaller number

Scott Benner 28:50 you see 170 more often than you want.

Unknown Speaker 28:55 Is that data is just like on the graphs, you know, it tells you like your standard deviation. Mine's like 40 something. Oh,

Scott Benner 29:02 okay. Yeah. So you're bouncing around a little bit. Yeah. So why do you think that is?

Unknown Speaker 29:10 Because I don't pay quite as much attention as I should.

Scott Benner 29:14 Does that mean you don't Pre-Bolus your meals or does that mean as it's going up? You don't do anything about it?

Unknown Speaker 29:20 Um, I Pre-Bolus not always as much as I should. It seems like when I do Pre-Bolus Like I've been working on that more because I'm like, oh get on the podcast is gonna ask if I'm Pre-Bolus and then I'll drop low in the My mom's like, Oh my God, what's going on? And I'm like, Well, you know what, it just doesn't always work the way you want it to how long? Oh, it'll go like into like the 50s or 60s. And you know, which isn't the end of the world.

Scott Benner 29:49 So when you so when you Pre-Bolus a meal and you get into the 50s or 60s What like while you were getting to eat Do you ever spike after that?

Unknown Speaker 30:00 Um, think about it. Um, no, not really. I mean, it keeps me lower. I haven't done the Basal tests you tell us we should do because I'm on the control IQ and I don't know how to Basal tests on it.

Scott Benner 30:14 Well, you can you just shut the control IQ part off and just use it like a regular pump. Oh, yeah, probably. So yeah. And then just do it. We just did this, Martin. So, Kelly, do you mind me telling you a story here?

Unknown Speaker 30:27 Yes. I'd love to hear sir.

Scott Benner 30:28 Let me just drink a little water. So Arden left for the college last week. And how are you? I mean, it was easier than when I took my son. I think I had some perspective. I knew what it was going to feel like. And I almost cried in the shower on the first day in the hotel when we dropped her because we stayed a couple of days, because she's so far away. Right? And I didn't I sucked it back in. And I thought I'll just save this for the day we leave, you know. And then when we were standing in a room saying goodbye to her, I, I cried then, and I tried to tell her something. But every time I tried to speak I would cry. So I just I just sort of said to her, I was hugging her. And I said I want to tell you something, but I can't because I can't stop crying. So I just so we we left and my my biggest battle was as we drove away, I fought the um, I got a real big adrenaline kick. Like I was doing the wrong thing. Do you know what I mean? Like I should go get her or stay with her like that feeling. And then I had to fight through that adrenaline and we had two cars. And my son was with me and my wife Kelly was driving the other car. And, and Cole was driving. And he's like, are you alright? And I said, Have you ever been so angry? You've cried? And he said yes. And I go, I'm not angry. But I'm not sad at the moment either. Like, I'm literally like fighting off that adrenaline feeling like I'm so jacked up. I'm upset. Oh, he's like, he's like what would fix it? I was like, it would fix it if you would drive back there. And we would live with Arden. Or I was like, just keep going. But it lasted for a little while and then you know it passed. We talked to her last night. She's doing terrific. But the reason I bring all this up is because and I'll talk about it in another episode. But we figured something out about Arden's digestion. I don't know why, um, let me clear my throat. I apologize. We figured something out about Arden's digestion. But we only figured it out a few weeks before she left for school. And it was something she had been struggling with for years. And the thing we did, which again I'll talk about in another episode probably will come up long before you hear this one. It changed her insulin needs significantly. And so over the month that we were doing this thing I was seeing her insulin needs change seeing her insulin needs change. And as her stomach was kind of healing. This is my expectation. Her insulin needs became less and less, I'm assuming because food was flowing through her more efficiently. So by the time we got to the trip to Georgia, which took 14 hours in the car, she was on the lower side the day we drove down. But we were very sedentary. Like you know, obviously sitting still and you know car rides, generally long haul rides, people's blood sugars go up. Right? I remember thinking on the way down it's so weird that her blood sugar's are good in this car ride like this. Because I thought for sure we were gonna have to give her more insulin for the ride. So we get there. And then that overnight, her blood sugars are a little low. We had trouble bringing them up. The next day. They were on the low side that night. She goes to bed for the first time in her dorm room. And you have to imagine all I wanted for was to not have problems with her diabetes on the first day, you know, right, right. I just I didn't want that for we're only up the block in a hotel. And her blood sugar got low and stayed low all night long. Like we were up texting all night, like drink this, do that to the point where at like four o'clock, she's like, why is this happening? And I said I think we need to like reassess all of your settings. Because you just don't seem like you need this insulin anymore. So the next day we got up. I thought about it for a while it texted Jenny I was like this is what I'm thinking does this make sense? And she's like it does Okay, and I picked a static Basal rate, I ordinance looping again with with Omni pod, I opened the loop and created just a regular insulin pump situation. I put her Basal lower than I thought it would even need. And then I watched it for the morning and Arden throughout that morning through, you know, traveling around shopping at Target for things, you know, etc, getting a room, you know, buying extra stuff for her room. Her blood sugar was very, very steady at 110 with a point five an hour Basal rate. Wow, the two days before that Arden's Basal rate during the day was 1.1. So I was like, Okay, I'm gonna guess that somewhere in here, point six, maybe would be a good basil for her because she was holding it 110 I don't want her to sit at 110, I might make a point 6.7 In that range somewhere. And then we we picked, I looked at her insulin to carb ratio, which is aggressive at four and a half, four and a half, yeah, four and a half carbs for each unit. And I was like, Well, this is probably wrong, too. So I just changed it to 10. And I said, we're going to Bolus a couple of meals and see what happens. The part that, like was bizarre was that after we had a higher blood sugar that we had to correct, we corrected it, you know, to see what we thought maybe her insulin sensitivity was. So I think she was like 160 or so. And I was like, give yourself a unit, we're just gonna let this play out for the next three hours. Like I don't care what your blood sugar does, I want to watch it. And I ended up setting her insulin sensitivity at 70, from four from 42. So now all of a sudden, I've got these settings, point five and our one unit per 10 carbs 70 insulin sensitivity instead of 42. And I was like, alright, let's look at what happened here. So we did another meal Bolus. It didn't work, we needed a correction. I figured the I took the the amount that that the correction use to get our level again. At that point, I think I closed the loop, I let the loop fix a a meal rise that I took the amount of insulin the loop used to correct the meal rise. And I you know, reverse engineered it to get it into her insulin to carb ratio. And I ended up making her insulin to carb ratio, something like I forget what it is right now. Seven, six or seven in that range. And then her blood sugar for the next three days was insanely good. Super stable. No lows, overnight. Terrific. But but look at how much it changed just because foods not sitting in her stomach anymore. After she eats, and she's going to the bathroom on a better schedule.

Unknown Speaker 38:07 That's interesting, because I do have some digestion issues. So that very well could play a part. I need to look into that. Yeah.

Scott Benner 38:15 So what we ended up doing for all the things and like I said, I'll make an episode about it. But just to bring it all into context here. I won't give you the big story. But what ended up happening was, is that Arden stomach hurt for years, like she's always like, my stomach hurts. My stomach hurts. She started having these weird like, I can't eat this. I don't want that I'm hungry today. I'm not hungry. That's my son. Yeah, go into the bathroom intermittently a couple times a week if she's lucky. Like that kind of stuff. So we tried going like the normal medicine. Well, first of all, in fairness. We tested and did everything under the sun that a person with autoimmune diseases would do. Nothing came back positive. So eventually we go kind of the normal medicine route. We take her to a gastro, he looks down on her stomach and says, you know, there's still food here from last night. And I was like, oh, geez, and he goes and there's a lot of inflammation in her stomach. And he took some biopsies and there was no h pylori, which I guess is something they look for. And he looks at us and says here and he starts giving us all this medication. This is for the pain. This is for this that I'm like, my, like my 18 year old is gonna take like three medications for stomach pain. I'm like, What the hell are we doing? You know, like, this doesn't make any sense. And then he says, she has gastroparesis. And I go and I go, No, she doesn't. Like I see her insulin. I know how her insulin works. I know what happens when you have gastroparesis. This is not that. And he goes well, that's a it's a term we use. And I said well in the diabetes community, it's not working throw around. Okay. I was like, yeah. And he goes, this guy knows nothing about diabetes. He goes, Well, she could have it. And I was like, well, she doesn't because because she doesn't like I'm like, I, I've never once given Arden insulin, and she's crashed because Her stomach's not digesting. I'm like, she, her digestion is slow. She has gastritis right now, which she's probably had for years. And I was like, and we need to heal her stomach to get past this. And he goes, Well, I'm here, do this gastro precess diet, which was like, don't eat anything wrong. Nothing was skin. No meat, like, you know, nothing that digests slowly. And he goes, and this will heal her stomach over time. And I was like, how much time and you know, so we start doing it. A month before Arden's gonna leave for college, when she's on this restrictive diet, she's absolutely miserable. It is not fixing anything that I can tell. And at least not fast enough, because she's gonna leave for school in a month. And I'm like, all I'm saying to myself is there is no way that given the choice between this diet and stomach pain, Arden's gonna choose stomach pain, like she's not going to do this, if she's not with us, you know, right. So we're like, a week or so into this restrictive diet, and she just wakes up, and she obviously was beginning to feel a little better because she craved a hamburger. And so she was hungry. She's like that I would love a cheeseburger. And I was like, okay. If you do that, that's something for me. And so we talked about a little bit, we drove to a health food store. And I said to the lovely lady there, I want some digestive enzymes, something that helped break my daughter's food down. And she gave me something and I was like, great, and, and we laughed, and I said, Alright, eat your cheeseburger. Take two of these pills. She takes two of the pills, eats her cheeseburger, blood sugar never goes over 110 It was five guys. It was fries. It was I love five guys. It was a milkshake. And it was a cheeseburger. She ate it all her blood sugar didn't spike. And better than that. Her stomach didn't hurt. Interesting. And the next day, she went to the bathroom. Now she got very annoyed with me asking her everyday if she had pooped that she did not like, Dad, I am not telling you if I pooped, blah, blah, blah, etc.

Unknown Speaker 42:19 I can tell from your blood sugar.

Scott Benner 42:21 No, don't worry, I know. And so she, she, I have to basically keep after to take these pills for about a week. Well, about a week into it. She goes to have a meal. And she says to me, Hey, where are those digestive enzymes at? And I said to my wife, I was like, Oh, this is working? Like she's she knows it's working because she's asking for them versus us being like, hey, don't forget your eating take these. Before you knew it, she bought herself a pillowcase and started traveling with them.

Unknown Speaker 42:51 We are in advanced does she take them? Just take some

Scott Benner 42:54 washes even. Okay, just pops it in. Or afterwards. Take them right after it's fine. Okay, close. Yeah. So. So then, you know, a week or two went out on like, you know, you're still not going to the bathroom as much as I want you to. And we added magnesium oxide. Is that right? Hold on a second.

Unknown Speaker 43:11 There's a couple that you can do. Yeah,

Scott Benner 43:14 but there's not though if you talk to the Russian lady at the health food store, so hello. So yeah, so the woman's like, you'll take magnesium. She looks at Arden because now you know, Arden went from the first time we went to the health food store while we were on our way to the cheeseburger. Or Arden's like I'm staying in the car. I don't care about this. The next time we went back, she's like, I'm gonna come in with you. I was like, Okay, so now we're talking with the lady. And she says, You're not You're not eliminating I forget how she said it. This is my Russian accent. I don't even know she's Russian. She had a really crazy accent. She's like, you're not eliminating and ordering goes. Not every day. She goes, we will do magnesium. And I said, Oh, we have some at home. And she was it has to be oxide. And I was like, I don't know if I have that. So I'll just buy more. And I didn't so we had tried magnesium in the past, but we tried the wrong blend of it or something like that. Yeah, what do I know about magnesium? So I said, I'm like, Alright, take one of these at night. See what happens. And she started going to the bathroom on a better schedule. And so digestive enzymes. I'm so sorry. I can't clear my throat today. Digestive enzymes for the for the her digestion, this magnesium oxide to make poopies and everything is just rolling along now.

Unknown Speaker 44:45 And she needs less insulin,

Scott Benner 44:46 significantly less insulin. Thank you interesting. Half I mean her her insulin sensitivity from 43 to 70. I might adjust it a little. I'm watching it today. And today I'm not certain If we excuse me, I'm not certain if we have I'm looking at her blood sugar. You just heard Nightscout there for a second. I'm not sure if we have a bad site right now. Or if the settings need a little bit of adjustment now that classes have begun, right? Because I think she's getting she's got a little bit of that school adrenalin enter. So I'm looking at that. She just had a pretty big meal. And her blood sugar staying super stable around 140. So I think I think we need to move a couple of things at them. Sorry. Give me a second. So I think we might be making some adjustments. But anyway, the digestion thing is huge.

Unknown Speaker 45:54 Yeah, that's interesting. Okay, well, and I take his Olympic.

Scott Benner 45:57 Okay, does that keep it moving? or slow it down? That slows

Unknown Speaker 46:01 it down? Yeah,

Scott Benner 46:06 why are you taking him out?

Unknown Speaker 46:08 Well, when I was first diagnosed, I don't know when I started it. It's been like, two years ago, maybe my ANC was like in the low 70s. And I just could not get it lower. And I gained weight. And I was having a hard time getting, you know, like, nothing was moving the scale. And so my doctor put me on it. And it was, it was hard to titrate up, I will tell you, it made me really sick. And now knowing what I know, it was actually gastroparesis type symptoms I was having. But I didn't really know that at the time. And yeah, I mean, it curbs my appetite. So I'm not hungry. And I just take it once a week. I don't even really think about it. It's probably not I don't know if it's a bad thing to take long term. But I mean, maybe once these lower and I'm not hungry, and I lost weight. So it kind of makes me feel happy. But

Scott Benner 47:00 when the doctor brought it up was were they saying things like insulin resistant?

Unknown Speaker 47:06 No, they didn't say any of that. He just said, you know, we have a medication we give to type twos. We can try it. He said it helps with with weight loss and will lower your agency. We didn't call it insulin resistance.

Scott Benner 47:20 Instead of metformin Was that ever said?

Unknown Speaker 47:23 No. They tried to put me in that form in that like first week that I was diagnosed, you know, and then when they figured out it was type one and not type two, they they took it away, okay, because

Scott Benner 47:33 the reason I asked is because while this was all going on with Arden you know, we've been talking with Addy, who's the lady who did the thyroid episode with me, who is Arden's endo for I don't know. She's Ardens endo for a lot of stuff. Although technically Ardens endo is the Children's Hospital. But anyway. So we're talking to Addy and she's like, Listen, you know, if this next thing you try here with her stomach doesn't help. I think we should put her on Metformin. And I was like, really? And she goes, Yeah, I'm like wine, because she's like, well, so Arden also had this, like really bad acne. Like, like for years that she just couldn't make anything. Like she just couldn't get rid of it. Right. And what ended up helping that was getting the spelling which we're going to talk about on the podcast. Okay, so we had gotten down to being like this ardonagh of PCOS like what's going

Unknown Speaker 48:36 on? My friend's daughter has that form and really helped her. Okay,

Scott Benner 48:41 so we began using a vast a tall it's a over the counter. Drug, not drug it's a powder. I don't know what the hell, okay. And she uses like, a scoop of it a day. dissolve it in water or another drink. And you drink it.

Unknown Speaker 49:07 And what's it for?

Scott Benner 49:09 Listen to me, Kelly. I don't know. I was just told I was told. Try this, right. And I'm like, Okay, so I'm trying to find what's in it right now for you because it's a very simple

Unknown Speaker 49:21 and if it was for her acne or was for we don't know why we?

Scott Benner 49:25 Well, it was because we had gone through everything else that could possibly be wrong with art and in the world. And we all just landed on it seems like she has a hormonal imbalance, right? Because that nothing else made sense. Arden's periods were 11 or 12 days long. She'd get a two day break in between them. The her bleeding was incredibly heavy. She'd get a bloody nose out of nowhere like her to hurt her acne was terrible. She went on a pill the pill not upheld the pill and it did not touch the acne. She gained weight because of the pill. It did shorten her periods and stop the nosebleeds.

Unknown Speaker 50:08 So we wrote the Gardasil vaccine.

Scott Benner 50:11 No, we didn't give that to her. Okay. That's the one for HPV. Yeah, she didn't have that one.

Unknown Speaker 50:20 That one can cause some hormonal issues. Yeah. We told her

Scott Benner 50:23 we just had no oral sex. No, he didn't say just just didn't do it. And so So anyway, so you know, before we try Metformin, let's try this over the counter thing this Avast at all. So she's on it for a month, and things are looking better. And then all of a sudden, six weeks into it, she gets her first, you know, she gets her period. And we're like, all of us have like, our fingers crossed, and her period is shorter than it usually is, had stopped. And now we're just watching it like God, it's not gonna start again, right, and it didn't start again. And then the next month, her period was a regular amount of time, and the nosebleed stop. And then the third month, her period was the regular amount of time. And we were like, Holy hell, this powder is it seems to have like, fixed her. I don't even know another way to say it really? Like, it fixed her. Yeah, and her and her acne started to trend in the right direction. We're like, Alright, cool. Let's keep doing this. But her stomach still hurt. Like, none of that was going away. And you know, and that's tough. Because when you have these problems, you're like, Oh my God, look, they're all like, so many of the problems are getting better. But then this part didn't like holy shit. Just like Oh, come on. Like, really? You know what I mean? So that's when we did the endoscopy to look in her stomach. avasta tall. Am I saying that right? I should say it right of acid tall. Has my oh. Oh God in us the tall in it. And D Chiro in a subtle so it's m y O dash N I O S it O L and D dash c h I r O dash i n o s i t Oh, that's what these two things are. I couldn't be okay, our house we call it uterus water. We also call it lady water. And her friends caught her vagina juice. So sometimes the her friends would pick up her glass and drink and and be like, Yo, my, my uterus water is in there. And they're like, I want my uterus to be better too. And you know, they just anyway, so who knows this thing, this powder just straightened Arden's life out 85% And then the enzymes at the meal, seemed like it was the rest of it and the magnesium to make the poopy. So

Unknown Speaker 53:06 I'm on some of that for myself. And for one of my kids who's having still has issues undiagnosed. So my boys,

Scott Benner 53:14 when this starts with her, I think, you know, gosh, a lot of what happens to Arden with food in the bathroom. I've noticed that through my life as well. So in the beginning, when she was taking the enzymes, I'm like, Look, I'll take them with you. And I've had to take for years, I've had to take fiber to kind of help my

Unknown Speaker 53:35 process. I remember hearing about that because you couldn't get it during COVID

Scott Benner 53:39 and I don't need the fiber now if I do the enzymes. Interesting. Okay. Okay, so I was like, alright, so on the ride home from college, my son and I were talking about it, my son goes, I'll try that. And I was like, okay, so I went out yesterday and bought him a bunch of enzymes and I said here just take take these when you eat

Unknown Speaker 53:58 or email me a picture of it when we get off so I know exactly which ones to go by.

Scott Benner 54:01 I got one. So I got one from our local health food store, which I think is just made by them. And I've also used the one by pure pure makes them right okay. And those are the only two that I've seen so far. And they've both poor encapsulations digestive enzymes Ultra. I started using and then I just decided if my daughter is going to use these other ones I'll just use those so I'm just using the ones from hers and I don't know if everybody has like a black forest acres health food store near them, but I'm using their their in house product. Gotcha. Okay, called Super Zaanse.

Unknown Speaker 54:45 And it was magnesium oxide, not the Yes, calcium or whatever that one is.

Scott Benner 54:49 And that's just once a day. And I hadn't taken it at all. I was like, I don't need that. But yesterday I was like, whatever. I'm gonna do everything she's doing so I know how it's impacting her. And I did notice at work yesterday with some exuberates.

Unknown Speaker 55:07 So you take it at night or in the morning,

Scott Benner 55:09 you're gonna have to figure that out yourself. Kelly, I'm not a doctor, nothing.

Unknown Speaker 55:13 Oh, now you're not

Scott Benner 55:15 telling you what I'm doing. I can't give you different now I don't know, I

Unknown Speaker 55:18 see you taking it day or night.

Scott Benner 55:20 I took it during the day yesterday, and it made me it made me say to myself tomorrow, I'm going to take it at night. Some of the traits and I when I go to bed instead of during the day today, I'm on it, I'm on it. But anyway, here's the real thing, right? Like all this, you hear us talking about on all the time, how you're balancing, you know, the axon to actually the insulin against the impact of the carbs. And the impact of the carbs really means the carbs that are in your body. As your body is leeching out, you know, the sugar and it's going into your, into your bloodstream. That that availability, that food availability, has a lot to do with how long it's in your stomach and how long it digests, right? Think about pizza, and or fat rise or all that stuff? Like what would happen if food just moved through you more quickly? And is there? And this is the first time on to sound like a hippie, I think but is there a relationship between diabetes or thyroid stuff or whatever? And how long your foods taken to get out of you? Right? Right. So I don't want to cause a run on digestive enzymes. But for 20 bucks. It's worth trying. Absolutely. Yeah. So I got all right over here trying to fix the my daughter, and maybe somebody else would benefit from it too.

Unknown Speaker 56:41 Absolutely. Well, I mean, I've been going down this rabbit trail for five or six years with one of my boys. And then finally they said he had SIBO, which is small intestinal bacterial overgrowth, and that was the functional medicine doctor and the GI doctor came to the same conclusion at same time or pretty close. So one was doing alternative med stuff on him and he was starting to feel better. By the time the GI doctor said it was SIBO. And they give him the antibiotic things called Zafran. And so to the x xi, or XYF, five Arn or something. Anyway, it stays contained in the colon, or in the intestines, all the way through, it doesn't leach out into your body. And that that's given him a little relief. But gluten and dairy and soy are horrible for him and gluten and dairy for my daughter. So maybe the digestive enzymes will help.

Scott Benner 57:38 Which we were in Georgia for five days, maybe. So we were supposed to say we I think we got down there on Tuesday night. We all stayed in the hotel Wednesday, we moved on into a room Wednesday night was the first night Arden stayed in her dorm. We stayed Wednesday night, Thursday night, Friday night, we were gonna stay Saturday night and then go home Sunday. But we said kind of realized on Saturday afternoon, like we're going to get up early in the morning. And we're not going to sear in early in the morning. And, and she's got homework tonight and everything already. So we're not going to see her tonight. So we said goodbye to her on Saturday afternoon. And we got back to the hotel and my wife's like, I need to get out of here. Yes, like I can't just sit here with her being three blocks away. And I'm not going to talk to her and I'm not going to see her. She's like I need this process to start I need to leave. So we just jumped in the car and went but my point is is that I was there like four or five nights. And my I need to find a better word for this right? But the process that food goes through me while I'm traveling is not great. And so when I travel or I fly, I'm always like just dosing myself with fiber to keep everything going.

Unknown Speaker 58:52 And most people have that where it's I don't know what the word is. They call it traveler's diarrhea, but that's kind of the opposite. But a lot of people just slow down when they're not home. Nothing works, right? Yeah,

Scott Benner 59:01 well, I and it's definitely the opposite for me. Although I would love to call this episode traveler's diarrhea, but I don't think I can and but let's keep that in mind for future. And so this time I was just like screw it. I'm taking these enzymes when I eat and I am not going to take any fiber and I'm just going to see what happens. And it was was 150% better than it's ever been for me. And I was also not restrictive with how I ate which I'm usually when I travel I stay really light I stay very low carb I eat more like like animal protein stuff like that. And I didn't do that like I had French toast at breakfast one morning with like syrup and powdered sugar on it has like this diabetes group right. Martin had the same breakfast by the way we My mouth

Unknown Speaker 59:50 is watering. Oh no, I eat it all the time. No problems. Just saying you're making a mouthful. I

Scott Benner 59:54 scraped the powdered sugar off that I have to be honest. I don't know what you people are doing in the south but it was like It looked like somebody threw it on with like a fist. That's like they grabbed a handful. And I was like, I am not eating this. And I scraped it off. But, but my point is, I was fine the whole way through. And so was art. And after we just did her settings, so it was her blood sugar. I'll tell you right now, even though I say it constantly, I am doubling down on it settings. Everything is settings. Everything, setting, setting, setting, setting settings, your settings have to be right. Don't go along going. I don't know why I'm getting low. Like Kelly, you shouldn't be getting low after you play tennis. Your settings aren't right. Yeah, tennis

Unknown Speaker 1:00:34 is really hard for me because like, one match, I think it was not yesterday, but the day before I played, and I was high the entire match. The next match I played the next morning. Hi, I missed the entire match. Then that evening, lo the entire match, you know, obviously because I'd already played the two other matches. But like some matches, I'm high some matches. I'm low. And it depends on the heat and the you know how hydrated I am. There's so many factors, aside from just my settings that go into it. But you know, as soon as I think I have it figured out, then something slightly changes like the weather in Oklahoma. But

Scott Benner 1:01:13 Well, I'll tell you, I'm going to share a text I sent to Arden this afternoon. So actually, so like I said, she's been a little high the last like 24 hours at more like the 130s like very stable 130. And so I said to her this morning, Hey, good morning, I said, the pod is struggling to bring your blood sugar down. So let's try and override to get you through your classes. And we did that we moved on loop we made her override like 130% targets of 90 for four hours. It held her right around 120 during her class. And I said, I think now Mike, I think the site's weird. Let's make a Bolus, like let's just throw in insulin to see what happens. She pushes into units. I don't see anything happen. I'm like, Alright, so maybe it's the site. Or maybe it's her basil, you know, is a little weak. Or maybe for instance, sensitivity is a little weak. Like maybe it was great while we were adjusting it in those first couple of days. But now she's getting up but she's going to class, we're going to need to be a little more aggressive. So I sent her this Texas that if the Bolus works well, she just made a meal Bolus. I said, we're going to make adjustments to your insulin sensitivity. If it doesn't, I'm going to think about maybe the site needs to be changed. But that seems odd because it's only been on for about 48 hours. Or maybe you're dehydrated because it's hot there. So like those are the three things that I'm thinking about right now, as I'm watching what's happening to her blood sugar.

Unknown Speaker 1:02:41 You can it's amazing what hydration does, especially when it's so humid here like right now we're only 80 degrees, but the humidity is still really high. So even I played a match when it was 104 and there were women dropping like flies. I'm like I don't know my pancreas doesn't work for my my cooling systems really good. You know, but I was very hydrated. I don't have any problems, but that humidity will suck it right out of you.

Scott Benner 1:03:06 I wonder how much of your hyperthyroidism has to do with you feeling doing well with the heat? Or if it doesn't know, I don't know. I don't know I I am as close to being an autoimmune scientist. Now as I've ever been in my life. I'm so I know.

Unknown Speaker 1:03:22 That's why I was so excited to talk to him like he's gonna help me.

Scott Benner 1:03:26 Listen, we've been chatting away about things we were never going to talk about to do you have questions or things you want to talk about?

Unknown Speaker 1:03:32 No, actually, I was interested in Yeah, kind of your thoughts on the thyroid. And I'm happy to hear about all this digestive stuff, because I think I can think of three people in my immediate clan that are going to be looking at this. So no, that's fantastic.

Scott Benner 1:03:47 When I was like eight or nine years old, I can remember I used to go out with my cousins a lot. And my uncle owned a sheetmetal shop that many years later I ended up working in that was maybe 20 minutes or so from his home. And so he was aware of a pizza joint around the sheetmetal shop that they like. So if I stayed at my cousin's house, we would often drive this 20 minutes to this pizza place, drive past my uncle shop, to the pizza place, have pizza. And inevitably, we'd leave there. And I'd be like, I need you to stop I need to use the bathroom. And so we would stop at his place. A sheet metal shop in the middle of the night, which was creepy as hell. And I'd wander through and use this dirty filthy oh my god, just filthy restroom. And, and then we'd make it to 20 minutes back to his to his house, and then I wouldn't feel good all night. And I remember even as a child being like, my cousin goes into the bathroom. And he's back out in a few minutes. And he's okay. Like, why is like why doesn't that happen for me? You know, and I just struggled my whole life with it. And it just never. It never got better. I think that part of my eating, like the weird way to eat is something that I've adapted to not not to not feeling sick, right, you know, without even knowing it, because all these things we talked about now and, you know, in a modern society like growing up in the 80s, like you just, you were Scott who was in the bathroom, you know what I mean? Like there was nobody was like, I wonder what's wrong with them. There's like, this guy can't handle pizza. It wasn't me. Like, it wasn't any bigger thoughts than that. And so, I mean, I don't know, like, it's had it's had a bad effect on my life. Because if I try to eat more food, that's what my body seems to want. But then I just gained weight, even though I'm not eating very much. And so maybe everything's just sitting in me too long is it's Yeah, is what I'm wondering. So I'm doing the same thing Arden's doing so I'm interested to see what happens to me as well.

Unknown Speaker 1:05:54 So what you mentioned that Foreman So did they put her on Metformin?

Scott Benner 1:05:57 No, because the basketball works so well, because that works so well. She didn't need them that came off the table. That idea that was our next more aggressive step if the basketball didn't help a basketball reviews are insane. Like there are some people take it and go, Look, what was wrong with me didn't change. This didn't help me. Fair enough. But there are people who say, women, I can't get pregnant. I take this stuff. And two months later, I'm pregnant. Like these people have been these people been trying to have a baby for years, and they start taking this thing and all of a sudden, pregnant.

Unknown Speaker 1:06:33 Interesting. Well, I don't have a uterus or ovaries so that's probably not going to be the magic

Scott Benner 1:06:37 potion to lose them. Kelly, where are they?

Unknown Speaker 1:06:40 I did yeah, no, I had them all removed at 41. Actually, what why? I had, well didn't know I had endometriosis. Oddly, because I mean, I got pregnant super easily with all four kids. But was having really bad pain and really heavy bleeding. And so when they went in to do just basic hysterectomy, he said, my ovaries were all strangulated. With endometrial, you know, whatever, endometriosis. So they took it all.

Scott Benner 1:07:12 You know, earlier, when I asked if your daughter's lupus had changed over the years, it was a question based on how many times doctors have said to me while talking about my daughter, you know, girls this age just sometimes struggle. And I'm like, that's a medical opinion. Girls this age just sometimes struggle. What do you mean? You don't mean? Like are we see this? Girls who had stomach pain after they start getting their periods? Blah, blah, blah. You know, sometimes they grow out of it.

Unknown Speaker 1:07:47 That's what they told me about my son. He was throwing up everything he ate. And they're like, what some kids just throw up? And like, that's not Yeah, no, no, that's that's not

Scott Benner 1:08:00 the land. None of those children were vomiting while we were walking around, like, what do you tell? Yeah, it

Unknown Speaker 1:08:04 was? Yeah. So they're like, well, some of them I've had kids like this, they just grow out of it when they get to college. Well, that hasn't happened. Either.

Scott Benner 1:08:12 We're or maybe they just find a way to eat around everything that's bothering them. And then we go to the next simple answer, which is like, oh, you can't handle dairy. Or you can't because listen, I can easily tell you that there have been times my life you could have easily said to me, Scott can't handle dairy. There are easily times my life. You could have said that to me. Except I can. Yeah, I just like, Yeah, my body's just not doing something it should do. Yeah, you know, so

Unknown Speaker 1:08:42 we did do the stomach emptying studies on my son, and that did not yield any slowness, according to them, but I still think digestive enzymes might be

Scott Benner 1:08:52 they wanted to do that test. And she was supposed to do it a week before school. And I said I do she does not need this test. And my wife said Come on, let's just do it. I was like, I She doesn't need it. And actually, I talked to Jenny and Jenny's I don't see why in the world. Arden would take this test. Even Jenny's like Arden does not have gastroparesis, but not get your braces like it's thought of in the diabetes community just in, in the clinical sense of the word. So everybody who's around diabetes thinks gastroparesis. And they hear the word and they think one thing but it has just a very, like a very technical term. It's a disease in which your stomach can empty itself of food in a normal fashion. That's right. That's what gastroparesis is. And you can have that without having diabetes. Correct. If you if you have people who have diabetes sometimes have out of control blood sugars, which make this happen to them quickly. Or more significantly than, you know what you see in the normal population from my understanding. And so the guy was just using the term I'm with Arden like he uses it with anybody. Oh, Arden has a slowing of her digestion. We call that gastroparesis. And, and he didn't even realize I think the the impact that the word would have on us like when he said it out loud. I was like, wait,

Unknown Speaker 1:10:18 what? Like no, right? Like fear. Yeah, I

Scott Benner 1:10:21 gotta tell you if, if Arden has guessed Her price is caused by diabetes. I'm gonna I'm moving everyone in the garage and turning the car on. Like, I give the backup Kelly unit. Like, I don't sleep. I keep her blood sugar amazing. Like her agency and her variability and everything. It was like, like, if that's I just give up? If that's it. It's so I was like, that's not right. And I talked to Jenny, Jenny, I talked privately about it a bunch. And she's like, I can't see it. She's like, I just, I don't see how that could be true. And so ignoring the doctor skipping the very expensive tests he wanted to take, and just going to the health food store and buying $30 worth of pills, straightened her out. And I don't mean like over time, I mean, immediately. Yeah. So

Unknown Speaker 1:11:10 I'm gonna buy it. My son's getting it this weekend. And so it's my daughter. So why I'm going to start it

Scott Benner 1:11:15 to give it a well, that's why I did it originally. Because there's like, I have enough of this concern. I also started thinking that I'm probably more like you. Like, you know, like, if there's nothing you can do about it. Just shut up and keep going. Right, great. Well, that thing. And I wondered, I didn't ignore all this stuff. Because was Arden and look at all the things we figured out. But when it was me, I was like, you know, don't be a baby Scott. Just keep going. Right? It's like one

Unknown Speaker 1:11:43 night is hard. Yeah. Cuz when it's your kids, I mean, you've put so much time and effort into them and you kind of fall on that backburner to a degree. I'm not in a bad way. But I mean, I just do it. I mean, I don't do it as well as you do. And if it were my kid, I'd like to think I would do a better job. But now that everybody's gone, I'm like, Okay, it's time for mom to get serious. Not that mean, six fives not a bad day when see. But yeah, I know, it could be better. So lovely.

Scott Benner 1:12:10 You're doing great. I think you just have you probably have a couple of settings that are slightly off that are causing you're bouncing around. And then that's what I would imagine is your issue. And you know, it sounds like even when you Pre-Bolus you might even be Pre-Bolus in too long. So So I think your settings are just a little skewed somewhere.

Unknown Speaker 1:12:31 So I need to get a hold of Jenny.

Scott Benner 1:12:33 Just dial it in. I mean, I could do it. But I'm very busy going.

Unknown Speaker 1:12:39 Busy being an empty nester. And yeah,

Scott Benner 1:12:41 I'm also not a doctor, it would be very inappropriate if I helped you with that.

Unknown Speaker 1:12:44 Well, you know, it's all good. It's all we take it all with a grain,

Scott Benner 1:12:47 although I fixed Ardennes while I was walking around target. And I was pretty impressed with myself. Like, everyone's going crazy. And I'm like, I'm yelling to Kelly. I'm like, I forget what I said to her. I said something like I was figuring out her. I was trying to figure out her. The insulin sensitivity assay, take this number divided by 1800. Real quick. Why I might just do it. Because

Unknown Speaker 1:13:09 I knew the answers. Yeah, I need to dive in and learn a little bit more about it. Because I like I said, I had an hour's worth of training. I've learned more in the podcast than anywhere else. And honestly, the first time I listen to the podcast,

Scott Benner 1:13:24 I didn't love it. Yeah, I'm hard.

Unknown Speaker 1:13:27 No, it wasn't God, it wasn't you. It was an I popped on. Someone said, Oh, listen to the juicebox. So I got on a juice box. And it was a story like this one. And I'm like, Okay, I'm gonna have to listen through hours and hours and pick the little bits and pieces out. And I need information in order to mean and then I realized that there was the, you know, pro tips and you know, you were developing those maybe when I started. But anyway, that is huge, because you can get in and get really good MIDI information. And then listen to the stories when you're on your walk and you aren't needing to take notes. You can just, you know, take the tidbits with you. And so it's a really nice balance. But you know, this wasn't available when I started,

Scott Benner 1:14:09 right. Well, listen, I'm

Unknown Speaker 1:14:10 glad when I was.

Scott Benner 1:14:12 I'm very glad to hear you talk about that way. Because when it started for me, I didn't expect that it would be what it is now. So I was just telling stories about how we handle things. And then people were like, you know, I've been listening to the podcast and my one sees going down. Right? It's like, oh, it's because everything I do is in there somewhere.

Unknown Speaker 1:14:31 Right there. I didn't start at the beginning. I started at the end, you know, kind of whatever was current was what I was listening to so I didn't even get the beginning stuff. It was in my cousin. When I got diagnosed type one. I was a type one for five years, maybe? Yeah, probably about five years. And my cousin my first cousin, her son was diagnosed. And so of course, you know, she mainly calls me and you know, you We start going through all the stuff. And that's when I first heard the podcast and I told her Oh, you have to listen. And I called the back said, No, don't do not go listen. Because I knew it was gonna overwhelm her because she was very overwhelmed. But then once I figured it out, I messaged her back, I'm like, Okay, now I send people the little cheat sheet that you guys have, it tells all the episodes.

Scott Benner 1:15:24 And we and Jenny and I are doing that bowl beginning series right now to which I'm starting to see working for people who are newly diagnosed. So what what ended up happening is around 200 episodes, as I was approaching them, I was like, I can't expect people to listen to 100 episodes of this, just to figure out how to Pre-Bolus and that kind of stuff. Right? Right. So that's when I contacted Jenny, who had only ever been a guest on the show. And I was like, Can I ask you to help me, I told her what I was thinking. And we made the Pro Tip series with that. And then at the same time, I was like, if you want to keep doing this, I'd love to do definitions for people. So they understand what all these words mean. And we then we get defining diabetes. And then from there, I was just like, you want to do variables? Do you wanna do this? Do you wanna do that? You know, I was like, Do you want to do a series for people when they're newly diagnosed, and let's do one about thyroid, and let's, you know, and now,

Unknown Speaker 1:16:10 that's super helpful, because people get in there, and they can get, you know, a little short episode of really good info, and then go away and work on it. And then they can go back and get the next one. And it's not as time intensive as listening through our hour and a half podcasts. Right, you know, trying to glean information. Yeah, no, it's fantastic. I've loved it in the in the Facebook group as well. The Best Facebook group out there. I mean, it's the only literally, well, I won't say the only positive one, but pretty much I mean, rarely do you get people that are super negative, everybody's, like, supportive, and I get you and, you know, it's, it's very helpful, not very knowledge, something

Scott Benner 1:16:51 kind of happened on the internet the other day where somebody took somebody posted in my group, my private group, and it's a graph, it's not pretty of their kid, and they're trying to figure out, you know, they're asking questions, trying to figure out what to do. And a, I guess, what I would consider to be like, an ultra low carb group is, I guess someone's in my group under a fake name, because I can't find them. And they screen captured this, this person's graph, and they used it in their group to say, you know, I don't know exactly what they said, but it wasn't pleasant. And, you know, I don't know why people are doing this to their children and stuff like that, and blah, blah, blah. And I'm, and I'm not okay with that. It's the group rules, you can't take information outside of the group and everything. So I put up a very like, like, a very, like, strongly worded post about it. And I just told people, I was like, again, you can't do this, if you do this, you're going to be blocked. If I if I, if somebody tells me that in another group, somebody's making fun of somebody, I don't care if you made the post, but if I see you liked it, or you're in it, or you've made a comment, I'm like, you're out of here, like this business safe place for people. It needs to remain that way. And what you see is that 99.9% of the response when people say thank you, this is what we need. And it really is only a small fraction of people who are otherwise but once they're you don't I mean like it but it's like a I guess it's like

Unknown Speaker 1:18:22 yeah, it seems like about every three to six months. You have to go in and do it. You know, a Scott reprimand on people. It's funny I'm like, oh my god, it's hilarious what you said

Scott Benner 1:18:32 just this last one I was I already to you as we find because it makes the point but there most people are not like that. No, but it's like a flying your soup. You don't I mean, if only point oh 8% of your soup is fly. That's still too much. And no, nobody wants that. So every once in a while, you just have to go in and say it on my said I'm sorry to have to post this but from time to time it becomes necessary to remind some people about basic civility. You are not permitted to repost any images, graphs or words that are that you see shared in this group. If you do, you will be removed from the group and your account will be blocked. There are no second chances. If you are a person doing this, and you are hiding your true identity, well, I find that particularly cowardice and we'll be happy to call you a piece of your face. Please, please respond below so that we can begin that dialogue in if you see any reposting materials online please let me know so that anyone participating in this file behavior can be removed from the group. Let me be clear about what that means. Let's say hypothetically that one group uses an image from here to shame a person and then you in that other group participate in that conversation. You will also be removed from this group. No one that would assert a false moral superiority. Using a member of this group as cannon fodder is welcome here to take this a step farther. If you think it is okay to use another person to make your point. And you should also leave the group immediately. There is nothing more important than the privacy and safety afforded by this group, a group and for people living with diabetes, not just the people whose decisions you agree with, but all people. If this is the sentiment that you disagree with, please leave the group now. To the other 99.9% of you, I'm sorry that you had to see this and hope you have a pleasant evening. To the person who did this. I know who you are. I don't care why you think this is okay. I imagine that you're pretty pissed right about now. But please remember that as a courtesy, I did not identify your group. If you would please return the kindness by leaving my group and taking that post down, I would appreciate it. And to reiterate the sentiment that I've shared a million times before, I don't care what anyone believes, eats, smokes loves, doesn't matter to me. If it matters to you, right on, do you. But in this space, we don't make people feel badly for these or any other reasons, you will not push your beliefs on others here. I get that some of you think that you're saving the world. But again, make your own group start your own podcast, run a skywriter. Whatever makes you feel complete is all good with me. Unless you're going to repost something that a person shared here in confidence, because that is a bridge too far. So that's that. So yeah, about once, maybe twice a year, right? I yeah, I get to go to a creative writing class. And

Unknown Speaker 1:21:19 it's hilarious. I mean, it's always really, really humorous to me, because he just call them on the table just for I mean, and it is it's 100% True. Just leave people alone.

Scott Benner 1:21:29 I've had people say, Why didn't you send me this privately? I'm like, Well, you do something crappy. And then if we get to privately handle it, I'm like, No, if you're gonna be crappy in public, then you're gonna get talked to about it in public. And everybody else needs to know that they they're safe, be defended, and the rest of people who might do something like you, maybe they'll just leave on their own. I'm not looking to listen. I think that group is amazing. I think if you have problems managing insulin, or managing the psychological aspects of diabetes, somebody in there will help you. And I think the same thing about the Podcast, the podcast, if you want anyone seeing the five, just listen to this podcast, carve out 800 hours start at the beginning. Listen to it your A once he's going to be 5.5 when you're done. 500 hours. I don't have it. You do? What are you doing? You played tennis all day yesterday? You're fine.

Unknown Speaker 1:22:15 I did. You're right. You're right.

Scott Benner 1:22:19 And so, but but is everyone going to do it? No. Everyone's not gonna listen to the podcast. And that's okay. I can't make them listen to it. Not everyone's gonna be a nice person online. I'm not trying to make them be that. I'm just saying. If that's not who you are, if that's the if you don't want to be involved in this thing the way it is, that's fine. Just go somewhere else. But don't come over here. And you know, my pool, like, that's not okay. And let's not pretend that that's not what we're talking about with some big nice words and being flowery about people's feelings. And Baba, no, no, just be a person or get out. That's it. It's super, super, super simple. That's all super simple. I just said, Yeah, Oklahoma. You people can't drive in the snow by

Unknown Speaker 1:23:04 the way. No, they can't. But I'm not from Oklahoma. So

Scott Benner 1:23:07 you said that earlier. But you've been there long enough. Yeah, but I lived

Unknown Speaker 1:23:11 in Connecticut. That's where I lived. I guess I've lived most of my life here now. But yeah. I can drive in the snow.

Scott Benner 1:23:20 Yeah, I bet you can. But I don't know. Okay. All those trucks all those trucks. Little bit of snow. Everybody panic says in their house.

Unknown Speaker 1:23:30 Oh, yeah. Because their pickup trucks are hard on the snow.

Scott Benner 1:23:34 Kelly you throw a little weight in the back. It's fine. It's not a big deal. Couple cinderblock bags of sand something like the kids back there. You don't think in Oklahoma. You can still sit in the back of a truck. probably can. Yeah, I'm saying. All right. Anything. We haven't talked about Kelly that we should have? I don't think so. Cool. I appreciate it. I appreciate it. I appreciate all you do. Oh, thank you so much. I'm very happy for for how much the podcast is helping you. I'm glad that maybe we talked about something here today that will help your family I would love it if it did. If you would let me know. I surely well. Excellent. All right, hold on one second. Okay. A huge thank you to AG one. That's right. Athletic greens.com forward slash juice box, get that green drink. Start your day right. And cozy Earth. With the offer code juice box at checkout, you will in fact save 35% off every order all day long. Everything you buy at Ko xerath.com use the offer code juicebox. And of course, Kelly for coming on the show today and having this awesome conversation with me. Thank you so much. Guys, I hope you're enjoying the program. If you are a share it with somebody else. Don't forget to subscribe and follow and check out the private Facebook group Juicebox Podcast type one diabetes. Thank you so much for listening. I'll be back again very soon. with another episode of The Juicebox Podcast

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#925 Best of Juicebox: The Time I Decided to Share

First aired Feb 17, 2015. Scott talks about how Arden's Day went from a type 1 diabetes advocacy website to the patient blog that it is today.

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

Scott Benner 00:00 Hello friends, and welcome to episode 925 of the Juicebox Podcast Well, we're going way back today to episode three. It's called the time I decided to share and it originally aired on February 17 2015. My microphone is different. I don't know what I'm doing. And yet I hear so often from people that this is one of their favorite episodes. So that's pretty cool. While you're listening and wondering why couldn't have gotten a better microphone. 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 healthcare plan or becoming bold with insulin. If you head to cozy earth.com You will save 35% off your entire order with the offer code juice box at checkout one word juice box at checkout at cozy earth.com to get 35% off everything they have. joggers, sheets, towels, pajamas, they've got so much great stuff. Check them out cozy earth.com Use juice box at checkout to save 35%. The podcast is sponsored today by better help. Better help is the world's largest therapy service and is 100% online. With better help, you can tap into a network of over 25,000 licensed and experienced therapists who can help you with a wide range of issues. Better help doc.com forward slash juicebox. To get started, you just answer a few questions about your needs and preferences in therapy. That way BetterHelp can match you with the right therapist from their network. And when you use my link, you'll save 10% On your first month of therapy. You can message your therapist at any time and schedule live sessions when it's convenient for you. Talk to them however you feel comfortable text chat phone or video call. If your therapist isn't the right fit for any reason at all. You can switch to a new therapist at no additional charge. And the best part for me is that with better help you get the same professionalism and quality you expect from in office therapy. But with a therapist who is custom picked for you, and you're gonna get more scheduling flexibility, and a more affordable price betterhelp.com forward slash juicebox that's better help h e l p.com. Forward slash juicebox save 10% On your first month of therapy. The podcast is also sponsored today by us med us med is where my daughter gets her diabetes supplies from and you could to find out more Get started today. Us med.com forward slash juicebox or call 888-721-1514 All right. Okay, I'm gonna close my ears. Wait till you hear this microphone This is the Juicebox Podcast episode three. I'm Scott Benner. Today we are going to delve into the very beginning of my type one diabetes parenting blog called Art and stay. I let's see where to start. Okay. My daughter Arden was diagnosed with type one diabetes a few weeks after her second birthday in 2006. Just about exactly a year later, I began writing about my experience as a parent of a child who has typed block online. But I didn't do it the way you're thinking of it now in 2015 and 2015. You hear somebody say I started a blog and you go, of course she did. Everybody has a blog. I've been told that there are approximately 4000 Personal type one diabetes blogs on the internet, which is amazing here in 2015. But back in 2007. I didn't really know what a blog was. I had never read one although there were some in existence. There weren't many. And the only real reason I found blogging was because there was this piece of software on my computer called iWeb. And iWeb allows you to put your thoughts down on your computer and share them online and that seemed like something that I wasn't really excited to do, but it seemed like something that I needed to do. So Arden's day wasn't called Arden's day when it started. It was just it was just my attempt to reach out to my family and extend Good friends and my circle, you know, the people that that we knew and explain type one diabetes, that that's all I was looking to do it if you have type one, or if you're the parent of a child with type one you know exactly what I mean. There's this whole life this whole kind of micro cosmos of, of diabetes that other people just don't understand it, you know, and I find myself saying it all the time, come live at my house for a week and you'll leave running scared, you know, like those, like the normies did from The Munsters house, you will, you will run away and have a completely different perspective on on what's going on. So I thought, Okay, I'll start, I'll start telling people about it. But I can't go door to door, you know, I can't spend my whole day calling people on the phone explaining how am I going to get this out? I thought about, he used to do this thing for fun, I would get up in the morning. And while I was kind of getting myself together, I'd read the news. And I'd pick a couple of news stories. And just make fun of them and email them, you know, messing around to a couple of friends. Now you do that on Facebook, you get up in the morning and think of something witty to say. And you send your witticisms out into the world on your Facebook status. But a long time ago, I was doing that through email. And I remembered that as being pretty, you know, a pretty viable way of reaching people. Because if somebody thought it was funny, they'd send it to somebody else. And you know, before you knew what they were you were getting emails, like, hey, put me on your email list about when you make fun of the news. And I thought, Okay, well, that's a good way to get this information out. But I can't send these long, you know, full emails to people about diabetes. I'll use iWeb. I'll write my little stories, you know, little bits at a time digestible bits at a time. And then I'll send out an email and let them know it's there. Because how old you know in 2007, would you let someone know there was something on the internet for them to read? So the day I picked to tell people was just a regular day we got up, we had to go somewhere. My kids had to go to the dentist. We were going to have lunch, etc. We had to drop something off at someone's house. And I remember leaving the dentist office and thinking Arden's blood sugar was okay, you know, this is before CGM and all that stuff is she she was good. She was in a good spot. And we left and got food. And I do remember thinking she needed the food, I grabbed the food. And on the way home, I just tried to stop at someone's house and drop something off. Just it was an errand I had to run. And I think we just got caught in the driveway talking for a couple of minutes, you know. And there was no insulin involved. I hadn't you know, this is well before I would have had the nerve to give insulin before eating. So this was just the normal course of the day. We get home and we try to eat and I realized that Arden is lower than I expect her to be. And I test her. And I don't remember how low she was. But she was low. And looking back now I can see she wasn't just low. She was falling in love. Because as I was testing, she was getting lower. Now Now it's important to keep in mind that ARD was diagnosed when she was two. So this this is happening in August of 2007 Arden's you know, three years old, it's not really easy to get a person with low blood sugar to be cooperative. But it's it's even less easy to get a three year old person with low blood sugar to be cooperative. As I was sort of scampering around in our, in our kitchen, I saw the video camera. And I just flipped it. I stuffed it on the table, and I pushed the button. And then I went on to handling Arden's low blood sugar, my son was there, if this was 2008, he's like eight years old, are just three. And don't even think about the video camera again till we're done. And it was a particularly difficult few minutes. She was crying and snot coming out of her nose, and she was having trouble being reasonable. And I didn't know what I was doing. And when we were finished, I remember feeling sick about videotaping it felt really, really sick about it. And I didn't look at it for a while. But finally when I did look at it. And it was so shocking to me still. And I thought, well, this is something other people should see. Right? I've been spending this time on this blog, talking about the JDRF and low blood sugars and all these things that no matter how hard you try to explain to people, I just don't think the reality of it really comes through unless you're there. And I thought okay, well maybe this will help. Blogging was different for me back then. I wanted people to understand type one diabetes, but I wanted them to understand it so that they'd become advocates so that it would donate to organizations that were looking for cures and advancements. Because I am not a doctor and I desperately wanted to help move my daughter towards a better life. And so I was trying to use the blog for that. I can't honestly tell that if I was blogging for the reasons I am today, which is sharing so that hope Fully, you can feel less alone, or have a sense of preparedness in a situation when it comes up that you've never experienced before, you know, when something terrible happens, and you think, Oh God, I did read about this happen to somebody else, and they made it through, okay. And I even do remember a couple of the steps that they took me, that's me today, talking about and writing about type one diabetes, it's a sharing community building. Endeavor, back then, I just wanted you to be interested in helping my daughter to not have type one anymore. So my point is, I don't think I would share that video today. Because it's two parts. And that's coming from a guy who shares a lot of stuff online. A lot of transparency, a lot of a lot of honesty here on on origins day, and you know what come in here on the Juicebox Podcast, there's going to be even more of it. But I still, I can't tell you, I would definitely share the video. But back then I thought if this makes you understand and reach into your wallet and pull out 50 bucks, or 100 bucks or $10. So the video goes online, and it probably does exactly what I was hoping it would do. Because I think we must have raised like God, I think we must have raised $12,000 That year, that was our second year walking for the JDRF. You know, the first year or had only been diagnosed for a couple of months, I think we raised $1,000. But that next year with the blog behind me and my motivation at an all time high, raised a lot of money. And I'm sure that video and the video of art and getting up in the morning and seeing a needle go into a little kid's leg, I'm sure that that had a lot to do with it. And I'm, in retrospect proud of it and happy that we did it. I don't I don't look back on it and think we shouldn't have done that. So the blog begins, it's real advocacy heavy at first. But at some point, I feel like my asking is getting repetitive and boring. And I'm starting to see through interactions with a community that the videos and the sharing and I'm start is really helping people. So I start writing more about the diabetes and less about the Hey, help us raise money. And then I see those blog posts starting to connect with people. And my little blog that's reaching, not many people started to reaching a few more people and a few more. And I start really seeing the benefit of the transparency, and the honest sharing. I think the first really personal thing that I shared in writing and you might go back and read and disagree you might see something sooner is that in that coming year? After after the videos, we find out that Arden is as she approaches her fourth birthday. She she's you know, we told her you know, I don't know what you tell little kids, you know, make a wish on your birthday. And you know, I guess she knew that. And her aunt came to us and said, You know, I just thought you should know that Arden's telling people that she's wished for her diabetes to go away, and that she's not going to have type one anymore. When her fourth birthday comes now that was something that sitting here now. And looking back at when I wrote about it years ago, it's just as heartbreaking today as it was then. And it's still still to this day remains one of the more terrible things that that's ever happened to me. Oddly, not the knowledge that my daughter was running around telling people that she had wished for her diabetes to go away and it was going to that that wasn't the terrible, the truly horrible part of it was having to be a parent and sitting down with your four year old, not even four and explaining to her that she could not wish away her disease, that when her fourth birthday came, she was going to wake up and still have diabetes. And I'll tell you that that was the very first time I recognize that children, despite their age, are experiencing things exactly the way you and I are. Maybe they can't talk about them the same way. You might not see the stress or the worry on them. But when we told art and that her diabetes was not going to go away for her birthday. She cried like an adult who had lost someone they loved. It felt like you were at a funeral. And we've spent a lot of time since then making sure that Arden's hope doesn't die. And I think that also has been happening on the blog too. So as terrible and as really depressing. As the last two minutes I've been speaking is, it's not. And I'm going to tell you why. Okay, you may have heard a click there of a mouse, when I pause the recording, and it is because I walked away for a second to make sure that I came back after that. After that description of the first year and a half of the blog, as you know, something that didn't sound very upbeat, but I really want you to hang on because this, this is going to pay off for you. Just like it paid off for me. And just a second. So to reiterate, blog starts, I'm just trying really hard to make advocates because I can't cure type one diabetes, and I'm hoping to drive money towards the people who are trying, I use honest stories and video of it that people really would never imagine was happening in someone else's life as a way to bring you right into ground zero and see it. It does create advocates, and it does create donations. But it's also bleak. And I started understanding that people are reading the blog, who also have type one diabetes, people like you, parents of children who have type one. And while I am showing them a mirror of their life, I'm not reflecting back anything positive at the moment. This is it's, you know, it's just like bad. You know, it's not bad fundraising, but it's fundraising and, and it's, it's not everything I want it to be anymore. And so now I have to start sharing my process, something happens, there's a moment or an experience or something that you would expect is terrible. I gotta come back and tell the story from the other end, what did they learn what came out of this? You know, what's the, what's the upside, what, what what happened. And here's what I've learned, whether it's dealing, my wife and I sitting in our house dealing with Arden's birthday wish. Or another moment that seems just unfair, these experiences lend you a perspective that you'd have to live a lifetime or two to get in a normal circumstance. So type one diabetes sucks. And I would treat it right now for anything and never think otherwise. But as long as it's here, I'm going to learn the lessons that it's teaching. Because I need those lessons to deal with the next moment, I am building myself into a parent every day, and into a better adult than I was yesterday. And that can only benefit my children type one diabetes related or not. So I'm going to take what I can get out of this thing, this diabetes disaster. And I'm going to try to grow, because I'm going to tell you that when something happens, that the person you were before you diabetes was in your life, can't imagine it's something that exists in the world, or, you know, when you stop and think about, you know, when you were having children, and you thought of all the things that were going to happen, you never thought this was going to happen. You never thought you'd be at the mall, hiding down a corridor by a bathroom, changing an insulin pump, or, you know, forcing your kid to drink a juice box at three o'clock in the morning when they're not even awake when you never imagined any of that. But now it's here. When those moments happen, when you find yourself in your kitchen, getting ready to record a video for this blog that you're making. You don't even want to be doing, you're just doing it because you're trying to defeat type one diabetes with a blog, and your daughter just starts talking about a seizure she had when she was two, when that happens. And you have to stand there and be an adult and say the right thing. When they're done talking. You grow. And as much as it hurts, it teaches you and when you wake up the next day, man, that's where the hope comes from when something really crappy happens today. And your eyes still open tomorrow. And you're not dead. And it didn't knock you down. And that's where the hope grows. And it reframes your ability to handle the next moment that's coming. And that's the value in it. So getting through today's issue is not only making you stronger for the next time it happens it's going to eventually turn you into a person who doesn't see that as an issue anymore. And you will be zen like you will be matrix like at some point with type one diabetes. Now maybe you're listening to this right now in your child's been diagnosed for a long time or you've had type one diabetes for a long time and you're thinking yeah, man, tell people tell people that type one diabetes doesn't get easier but you get so much better added that it almost feels easy at times, tell them that's coming, even though they can't believe it at the moment. Find these newly diagnosed people, these parents who are a month into diabetes, or six weeks or a year, who are still struggling and thinking that it's never gonna get better, let them know what's coming. And that is what I'm hoping to do. And that's what I started to try to do with the blog back then, too. I started seeing my life as it was unfolding, and these lessons building on each other. And I thought I'd never would have believed this back in the beginning, I should tell somebody else, this isn't information I should keep to myself. So if me sharing creates a sense of sameness, or a sense of calm or a sense of preparedness for you. Some people say, reading ahead in the blog, when their child was just diagnosed makes them feel like, Oh, that sucks. But I at least I know it's coming or that it may come maybe when it happens, I won't be completely knocked over by it. If the blog is doing that for you, I am very glad of that. So as heartwarming as you can imagine, I just want you to know that some really bad stuff has happened to me, to my wife, to my son, and mostly to my daughter, Arden. And we're still here, we're stronger than we were, then we're smarter than we were then we're more resilient, more determined, and more transparent. Because stuff that you couldn't imagine before you had children, and before diabetes came to you is going to keep happening to us, we are going to continue to respond to it with our ever growing and ever building knowledge database of life, and I'm gonna keep sharing it back with you. And I hope you keep adding to yours. Here's the takeaway. Having type one diabetes is not fun. It's not anything good. But it's not everything bad. And there are a lot of things that are going to happen to you in the course of a day, a week, a month a year with type one diabetes, that sure, hindsight would tell you is not positive. And maybe you don't need that much perspective in your life, and you're not looking for that much knowledge. But it's here, you're not getting away from it, you're not going to you're not going to cure diabetes today. It's not going to go away tomorrow. But it is going to keep teaching us lessons. And it really is up to us how we respond to those things. Are you gonna put your head down and say, I can't do this? Where are you going to pick your head up and say, I look I did it yesterday, I can do it today. It's not killing me. And let me see the positives in this. You know, instead of just always thinking about the negatives that No, I mean, my God, I'm as tired as you are. I am tired. And there are days when I look up and I think No, not today, though, please don't need an insulin pump change today. Or why? Why is this blood sugar high? I did everything right. I know that happened. But you've got to roll with it quickly, quickly in and quickly out of the situation. You recognize it. Maybe let out a big sigh. You handle it and you move on, bang, bang, bang. There is no sitting around lamenting or feeling sorry for yourself. You want to cry, go in the bathroom, cry, Dry your eyes off, come out and keep going. Because you can because I'm doing it. And my God, there's nothing special about me. There's absolutely nothing special about me. I hate diabetes. I love my daughter. I want to see her live as long and as healthy as possible. I want each day to be as unencumbered as it possibly can be. So whatever bad stuff happened yesterday, I just look at it as a lesson for tomorrow. And I just keep building on what I know about type one, what I know about resilience, what I know about parenting and what I know about love. And that information, those experiences those feelings they make the next time. I don't want to say easier, because it really is never easier. I just keep getting better at it. And that makes it feel easier. It's going to work for you too. I promise. I promise if you keep a good attitude, I promise if you keep paying attention to what's going on, eventually you will build up your ability to slow everything down, you know, getting to be an old reference. Now that matrix been out for quite some time but the very first time something went wrong. You know that one video that I hope you go back and look at is of art and describing her having a seizure when she was I don't know she must have been about two and a half. I feel like it was about six months after her diagnosis. And a year later, completely out of the blue, she starts talking about this seizure and describing it and I still have this video camera out because I'm making a blog. And I do it again, I flipped the video camera on it's pointing at her. She has no idea it's there. And she describes some pretty heavy stuff. Three and a half year old girl talking about her eyes changing colors, which, if you really listen to her, what she's saying is she was blind. She talks about turning into a monster. But if you pay attention to what she's really saying, she was grunting because she couldn't talk. During the seizure. That's about as low as it gets. Man. My two and a half year old daughter had a seizure because I gave her too much insulin for some food are you talking about when your blood sugar gets low? Like cooking up really good stuff you weren't able to talk? Right? And then what happened? Did your voice make a different sound?

Unknown Speaker 26:03 Do you remember that? Like

Scott Benner 26:13 how did your eyes work when you were having your seizure? She was doing this. But we're still here. She's still here. She's fine. That's pretty much the worst thing you could have. I mean, I know right now, as a parent of a child with type one diabetes, your biggest fear is that your kid might have a seizure? Mine did. She still fine. She's still the kid you see on the blog, hitting a softball, playing basketball. She is as active and as everyday kid is anybody else? And the worst thing you can imagine has already happened to her. And I gotta be honest with you. It's happened twice happened about a year later to still here. Has it happened since then? No, no, that was, you know, she was two and a half. When that happened. She's going to be 11 this summer. So I learned, I figured it out. I figured out what I did wrong. I don't do that anymore. If I make a mistake, now I know how to take care of it better. But that's not the takeaway for you. The takeaway for you is the worst thing you can imagine happened to my daughter, she's still fine. We can keep that from happening to your kids with some resilience and, and some hard work. You know, you can you can take my mistakes and turn them into your knowledge. But please leave this recording. Leave it with the knowledge that nothing is as bad as you think it's going to be. And at least when it feels horrible. teaching you something. type one diabetes, teaches a lot about life. teaches a lot about who you are and who you want to be, and how you want to be that person. And what you wanted to accomplish today and what you're hoping to accomplish tomorrow. And what's your goal? But not a lot of people know what their life goal is. But you don't you? I know what mine is. We have a perspective on life as the parents of children with type one diabetes that people who live with type one diabetes, we have a perspective on life that you should have to live two lifetimes to gain. And maybe that's unfair. And I actually think it is I think you should have to think you should have to live a whole full life to know some of the things I know. But man, if it helps me take better care of my family. Then I'm glad I have it. And I want you to be glad you have this knowledge too. That's pretty much it people. This was number three Juicebox Podcast episode three. Felt like a bummer, but maybe it's not. I hope it wasn't. I hope you come back next week to come on. Do you sick for the Juicebox Podcast composed and performed by Sidney molar. If you enjoyed this podcast, please review it on iTunes. Well, thank the person that made this microphone that I'm speaking into right now. And thank you for listening to the podcast. today's podcast was sponsored by us med now us med like I said before is where my daughter gets her Dex comment on the pod supplies from its US med.com forward slash juice box you can also call 888-721-1514 You hit the link or call the number to get your free benefits check us med has an A plus rating with the Better Business Bureau. They accept Medicare nationwide, over 800 private insurers and they carry everything from insulin pumps and dive He's testing supplies to the latest and CGM is like the FreeStyle Libre three and the Dexcom G seven. US med always provides you with 90 days worth of supplies and they give you fast and free shipping every time better service and better care is what you're gonna get from us med with over 1 million diabetes customers served since 1996. US med is ready to help you. Us med.com forward slash juice box or call 888-721-1514 Thank you so much for listening to this episode of The Juicebox Podcast. I'll be back very soon, with much much more. A huge thank you to one of today's sponsors better help, you can get 10% off your first month of therapy with my link better help.com forward slash juicebox that's better H e lp.com. Forward slash juice box. If you've been thinking about speaking with someone this is a great way to do it on your terms betterhelp.com forward slash juice box

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Summary

• Intro to the show. 0:00

• Welcome to episode 915 of the juicebox podcast.

• Nothing on the podcast should be considered medical.

• Understanding insulin action and time of action. 2:49

• Fear of insulin is the biggest sticking point.

• Insulin action and time of action.

• Tug of war analogy, insulin and carbs.

• How blood sugar works in the body.

• Take insulin and start to eat. 8:37

• Rapid is a misnomer for insulin.

• Rapid insulin is 100% in most settings.

• Continuous glucose monitor, dexcom, continuous glucose monitor.

• The story of a 17 year old boy.

• Timing and amount of insulin. 12:12

• Timing and amount is the first step to insulin use.

• The importance of visualization.

• Dexcom g6 continuous glucose monitor.

• Share and follow features for android and iphone.

• How to make good decisions. 15:38

• Omnipod headquarters in massachusetts.

• Request a free experience kit.

• Dancing for diabetes and dancingthenumberfourdiabetes.com.

• Making the first move is the key.

• Diabetes is a science experiment. 19:22

• Diabetes is a daily science experiment.

• The pre-bolus piece is 80% of control.

• I don’t count carbs. 21:28

• Don't get mad, don't count carbs.

• No accurate insulin to carb ratio set up.

• The importance of the arrows in dexcom.

• The least important aspect of dexcom is the direction.

• What is pre-bolus and pre-basal. 24:54

• Temper basal is a fraction of the basal rate.

• Pre-bolus time is 20 minutes.

• The importance of pre-bolus and extended bolus.

• Pre-bolus vs extended boluses.

• Trading bolus for basal. 28:08

• The concept of super bolus.

• Never suspend basal insulin.

• Pre-bolus and multiple daily injections.

• Sponsor, better help. 10% off first month.

#924 APS Wookie

David has type 1 diabetes and is using Android APS.

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

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

Scott Benner 00:00 Hello friends and welcome to episode 924 of the Juicebox Podcast. Today, David's on the show he's using Android APS with some refinements. I'm gonna let him tell you all about them. David has a very popular diabetes blog called bionic walkie you can check it out at bionic wookie.com. While you're listening today, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. If you'd like to get 35% off at cosy earth.com, you can do that with the offer code juice box at checkout. If you'd like to get a free year's supply of vitamin D, five free travel packs, with your first order of ag one from athletic greens, you do that at athletic greens.com forward slash juicebox. And if you'd like to save 10% off your first month of therapy, you do that@betterhelp.com forward slash juicebox. David's terrific, you're gonna love him. He's from Australia. Fantastic guy. Wait, do you hear what he's doing with this Do It Yourself algorithm. It's really astonishing. This episode of The Juicebox Podcast is sponsored by touched by type one, a fantastic organization helping people with type one diabetes, check them out on their Facebook page, their Instagram page and at touched by type one.org. I'm going to be speaking at their next big event. I hope to see you there.

David Burren 01:53 I'm David Byrne. I live in Melbourne, Australia. I've had type one diabetes for 40 years now. Wow. I mean, but in my mid 50s. Now I'll be in my mid 50s later this month. That's what my wife tells me

Scott Benner 02:12 sounds like you're 54 Yes.

David Burren 02:19 Let's see. Quite a few Australians know me because I run a website called The Bionic monkey. There's a Star Wars reference in there. Which is all about diabetes technology. I've been living with closed loop systems, self built closed loop systems for about what more than five years now? And I I I've ended up coordinating a lot of the Australian community of do it yourselfers. That's cool.

Scott Benner 02:56 Okay, so you were diagnosed? Geez, when you were like 14? Yes. Okay. 40 years ago was AD AD AD to Jesus. Wow. That's a long time ago. Okay. It's crazy. You. You said you've been doing closed loop. So you've been doing? What have you tried a bunch of different versions? Or which one did you start with? I guess.

David Burren 03:24 Okay. So I started using a pump in 2010. Just to illustrate a little bit about my life, I've done various things during it at my endo had suggested to me a few times that are these insulin pumps, that might be something that you'd be interested in. You're a really technical guy. But I had been very much in the World of Goo. I know how injections work. There's going to be this strange thing of something attached to me. What happens if I fall off a boat or I get wet or something because in those days, pumps weren't waterproof. And then in late, late 2009, I attended a local event where I actually got to see and play with some of the NMS pumps, which were Hey, they were waterproof. And I decided right, this is something I wanted to do. I think that event was in September. Then I organized with my D, my data so they're getting a pump, but then I had to put it off until February. Because over December that year, I was an artist in residence on a ship traveling up and down the Norwegian coast photographing the Northern Lights. Because as well as working in it, I've also spent quite a few years as a professional natural wildlife photographer. Oh, wow. So I've done a few different things but so I started pumping and That went on for probably six years. Before I started using libre, that was the first CGM I got access to. That was 2016. And by early 2017, I'd seen the loop system and I'd seen the open APS system and I decided that open APS was the way I want it to go. So I started, I was carrying a little Android phone. And that was being my CGM and feeding the stuff into my little pocket computer that was running the open APS stuff. I was using an old Medtronic pump. And then in 2018, I got a combo pump, which were being sold in Australia at the time, and that's a pump that has Bluetooth in it. And Android APS could talk directly to it. That's the accucheck. Yes, the accucheck combo, which has last year it was discontinued. That had

Scott Benner 06:01 that had Bluetooth in it and 2018.

David Burren 06:05 That had Bluetooth in it in 2011. When it came out, wow. I have no carry. That's cool. That's a very old and primitive pump. And the interface that talks to it is quite slow. Because basically it's pretending to be a person navigating through the menus. It's not actually sending it direct commands.

Scott Benner 06:21 Oh, no kidding. Do you? Do you see it happen on screen as it's not? The screen

David Burren 06:26 is blank at that point. And it goes faster, faster than I would but it's still slower than if you're actually sending commands directly to its interest, but it works. Yeah. And that works quite well. So I've been using Android by system since 2018.

Scott Benner 06:43 Okay, so you use open APS still today.

David Burren 06:48 I don't use open APs. But Android APS uses the same algorithm. Excuse me,

Scott Benner 06:53 I misspoke. But okay, Android APs.

David Burren 06:57 And I'm not actually using Android APs. At the moment, I'm using something that's very similar to it, which is a version of the software that we've frozen, we use in some clinical trials. Because I've been involved in running a clinical trial over the last few years of Android APs. So this is on people in the real world. But it's a randomized control trial. So it was all at the level that the medicals would actually pay attention to the results rather than people saying, oh, it works for me. I haven't killed myself. Yeah. Right. And so that's through a local hospital. And basically it feels like some of the staff there look at my clinical results of me living my own life doing stuff and they say, oh, that's, that's amazing results. But we need a clinical trial. So I can actually prove this, this works. And in other words, that I'm not just a freak.

Scott Benner 08:01 Right? Well, that it doesn't just work for you and no one else but it is interesting how you are holding up your you are holding up your self as an example. It's like, Hey, look at this. This is what's working for me that like yeah, that's nice. We need to prove it. Yeah. Like I feel like

David Burren 08:16 so the that trials over and I on that one, I was the local technical expert on this hurdle plugs together and oh, when using a different insulin pump for this, so I was the guy who wrote the bluetooth driver to talk to the pump. So I'm fully involved in the technical level as well. Okay.

Scott Benner 08:37 So let me just for people listening, I want to just make sure that they understand. So loop for example, Arden uses a version of loop. Actually, I think Arden's using open APS right now. With the auto Bolus version,

David Burren 08:56 the free APS free, six,

Scott Benner 08:59 free free APS, thank you. Well, I don't this is the part that this is why you don't come to me, David on any of this stuff. Arden's using aren't using free APS, which is a version of loop that does auto bolusing. We are waiting to see the version that works with Dash pods, which I think they have been getting, I think they're getting it close to buttoning it up

David Burren 09:24 the loop world is it seems to be a bit fragmented. So there's various branches and versions that people are experimenting with, which is fair enough. That happens in all systems, but there's loop and then some guys made a branched version that they called Three APS, which was looped with some extra auto Bolus things. And then they made a different version, which is called free APS x with letter X on the end, and some people refer to it as short in shorthand is fx. And that is the open APS algorithm that It's also used by Android APs and open APs. But running on the iPhone. It's basically using all the communication stuff that was set up by Luke to talk to the pumps and the CGM. But they've put a different algorithm in the middle. But there's at least three different systems on on iPhones and to a certain extent, they all look and feel very similar. Yeah. Is there? So it's a bit hard to know what people are using when they say, Oh, I'm using free abs? Which one?

Scott Benner 10:28 Trust me, I don't know that. I know. I think sometimes I just, I, you know, I have people around me that say, Hey, this is the one you should be using right now. Like, okay, fair enough. Do you think there's a lot of outcome difference between loop Android APS, open all that stuff? Do you think people have basically similar experiences,

David Burren 10:47 I do think there's a difference. The openaps algorithm, which is called a ref one, just in case, I mentioned that, again, that has a bunch of things. It has SMBs, super micro boluses. So it's, that's where it calculates, oh, we need this much basil to do this amount of work, because we think we know where the glucose is going. So we need this much insulin. But the basil is going to take a while to get it in there. So the super micro Bolus will take a portion of that and deliver some of it as a small Bolus now, and then in five minutes, it might say, oh, we need some more. Or it might say, Oh, I better not put too much in because we've suddenly changed direction, just as well, I didn't put it all in at once. So that has made it reasonably fast at reacting to thing. It's carbohydrate model. Unlike the commercial loop systems, it's a dynamic one where you tell it how many carbs just like loop, you tell it how many carbs and then it decays those away, it has an idea of how many carbs are on board. And that's partly affected by what your glucose has been doing. So it basically only decays them away when it says oh, it looks like that that was one of the carb effects going on. Because that wasn't the same as what we predicted was going to happen without the carbs. But then it has a mode called UAM, which is unannounced meals. Where it looks at what your glucose is doing and says that looks like food, I'm going to treat it like it was food. I have not counted carbs or declared food to my system for almost two years now.

Scott Benner 12:51 I asked chat GPT to write an ad for touched by type one. And here's what I came up with. This episode is brought to you by touched by type one, a nonprofit organization dedicated to supporting and empowering individuals living with type one diabetes. Living with type one diabetes is a daily challenge. But touched by type one is here to make that journey a little bit easier. With our incredible range of resources, educational programs and community events. They're committed to making a positive impact on the lives of those affected by type one diabetes, from the dancing for diabetes event, to their annual conference, which by the way I'll be speaking at doesn't mention me but I'm not insulted by that. Touched by type one is always striving to make a difference. And the best part touched by type one is offering our listeners an exclusive opportunity to join their community and assess their resources for free. That's actually all true. Touched by type one.org. Just visit their website or find them on Facebook or Instagram. Touched by type one.org. Love this thing. I'm not even gonna have to think anymore. Don't let type one diabetes to find you were touched by type one by your side, you can lead a fulfilling life and take control of your health. So head over to touch by type one.org and get in there learn more about it. I'm adding that part because it's pretty great. They have a wonderful website. They do a lot of amazing things for people with type one. There's a bunch of programs just seriously take a couple of minutes to look into them. And if you're coming out to their event this year, I hope we meet please say hello touched by type one.org.

David Burren 14:34 I have not counted carbs or declared food to my system for almost two years now. I do not carb count. I do not Bolus I just eat and live my life. I don't know anyone who manages to do that on loop unless they're low carb. I would probably eat 200 to 300 grams of carbs most days and sometimes I go way over that. So I would not describe So for the low carbon.

Scott Benner 15:03 So the UAM on announced, what does it stand for?

David Burren 15:06 On announced meals on announced meals.

Scott Benner 15:10 So, and this is the on the Android aps that you're using, that hasn't Yes. Okay. And it sees, so you just eat, and it sees the rise, assumes it's a meal and hits it.

David Burren 15:30 Essentially, it's doing it in that cautious way of we're not going to Bolus everything we, we don't think this is a 100 gram meals. So we're gonna give it however many units of insulin right now, it doesn't piecemeal. But because it can come along every five minutes and dose another little bit more. It reacts fairly well. Now, I knew that the system had this out that the algorithm had this functionality in it back in 2017, when I started and this was one of the things that probably affected my decision as to which system was going to go for it know anyone who went completely Bolus LIS at that point. But it's always doing that in the background and saying, Oh, you missed a snack, I'm going to follow something for it. And back in those days, I was using jemalloc. That was the fastest instrument we had access to here. When I got access to figures, I thought, Oh, this is great, I'm finally going to be able to try and go hands free. And we were going out for Mexican that night. And that was a disaster. So

Scott Benner 16:41 it didn't work out though, you

David Burren 16:42 know, it took a fair bit of fine tuning. First of all, I had to get the dosing adjustments changed for fasp. Because the system was reacting slightly differently. But then I know a lot of people who see what I'm doing, and they come along and say, quite understand, but I want that right. What do I do to plug these things and turn it on? Because I want that? I want that now. And my general feeling is, well it takes a while because you need to know that you've got your underlying settings, right? Because what I started with was, yes, I was counting everything, declaring everything I was counting in declare eating protein as well as protein I can declare as as though they were a smaller amount of carbs in the future. On sort of metrics, what the body does, right, I was I was counting and bolting for food. And then I was getting great timing range, everything was going where I wanted. And then I'd start skipping announcing on some snacks, and how it worked. I stayed in range. And then you do it on a biggest accurate meal. And it all goes out the window and haven't quite got it right. Go back and fine tune. And I went through a phase where I counted and declared the carbs, but I didn't Bolus. Actually step before that. I counted and cleared all the carbs, but I Bolus less than the full amount with the expectation this system was going to take care of the rest. Essentially, in my mind, when you're Bolus for something with these systems, the Bolus is really just giving it a heads up. The algorithm should work out what's going on. And if you've told it, what curves are in there, it's going to do great. It has to guess it all by itself. It might not go quite as well. I actually found if I under counted the curves, the system. It's almost as though the system says You told me it was this much. And it doesn't react fast enough. If I over count the carbs a bit. It says oh, you've told me it's this much. But I haven't seen all of those yet. And eventually, they must have not been there. Because the algorithms always had this thing where it dynamically decays the carbs. So that if you didn't eat the second course or you dropped your ice cream, it didn't actually eat it, then it wouldn't necessarily try and deal with all that food that you might not have actually eaten. It's fairly flexible in that way. But it was a general process of taking away the bolusing but still declaring the caps clearing all the protein and yes, everything was coming in right? Oh no, I have to tune things. My insulin to carb ratio needs a bit of tweaking or my profile needs a bit of tweaking. And then I think it was November was I made some notes in my diary November was the last time I bought last and then in February was the last time that I declared carbs. Because I've gone through Christmas with not bolusing declaring all the food but not bolusing. And this was Christmas, New Year, there was lots of food on the table, and everything sort of went in range. And that gave me the confidence to stay right, let's, let's go completely hands free and see what works. And it did me ask you a little bit

Scott Benner 20:23 about the food you're eating? So, I mean, is this like a very balanced meal of natural foods and etc? Or is this Captain Crunch? At you know what I mean? Like, are we are you not taking in a lot of high fructose corn syrup? Are you avoiding things like that?

David Burren 20:41 I do have celiac disease, but I'm avoiding things with gluten in them, which means that I tend I tend not to eat too much bread. Maybe my diet isn't completely typical. I do. I do find I try to eat sensitively. But I don't all the time, we try to have meat and veggies and a mixture of things. Breakfast is the meal that I probably pay most attention to. Because I always found that I was most sensitive to carbs after fasting. Yes. And that might be because the Gus is all primed and ready to accept these carbs and leap on. There might be one way of looking at them. I have some friends who have children with diabetes and they swear by we give the kids something to line their stomachs that like bacon and eggs or something. And then they can have cereal and it doesn't spike them through the roof. So my breakfast, I have a standard breakfast and basically yogurt and some strawberries and some psyllium husks. So there's fiber in there. It's just a simple, basic breakfast that I don't have to think about, I can just get up and go to the kitchen and have breakfast and get on with my day. I'm on autopilot. And at that point. It's not a huge amount of carbs. And once my body's reacted to that, and I chose that breakfast, when I was still in still counting and bolusing because it was just easy to organize, I didn't have to think about what's my carb count this morning, I could just say, I think it's about 17 grams. Breakfast, it's not a not a high carb breakfast. But after that, whatever food I feel like eating, whether it's at an 80 gram block of chocolate, or an apple or sometimes I'll have a like I said I tend not to eat bread. So sometimes I have things in reps, but the sweet potato wraps because there's no gluten most of my I tried to go low carb in 2017 I thought this this will help me control my my glycemia which was bouncing around all over the place. But in fact, it didn't especially help i Then I was actually thinking at the time, I need to lose weight because I was classified as obese at that point. And I didn't really lose weight. But later on I worked out now it's about actually about the calories when you're trying to lose the weight. Just just ate a reasonable number of carbs. But I've never really excellent when I say never years ago when I started out it was you inject this much and then you eat this much. We ate to the insulin whereas now it's if I ate more, I'm going to inject more or more of the point if I ate more my pump will have delivered more insulin by the end of the day.

Scott Benner 24:01 When you say staying in range, what do you mean by that? What are your goals?

David Burren 24:07 Okay, so I use I'm hesitating a little bit because my brain tends to run in millimoles and I know you're used to milligrams. So in milligrams the range I aim for myself like the green band on my setup is 70 to 140 Okay. And my target is around 90 That's where the system's aiming most of the time.

Scott Benner 24:35 How often do you get under 60 allow that you need to do something about

David Burren 24:45 let's say my neighbor brain is saying what 60

Scott Benner 24:51 I can get up my my chart. I can talk to you like this

David Burren 24:58 three point 3.3 RDL Sorry, I shouldn't wear the what I should do is one of my friends calls me sir graphology let me pull up a spreadsheet my time in range 470 to 140 is generally averages around 85%. And if I just find this stuff in here, we get my time below range, or all sorts of pretty graphs, here we go um below range for 3.3. That would be around half a percent of the day, on average.

Scott Benner 26:16 So you don't, generally speaking, find yourself rescuing your blood sugar with fast acting glucose very often,

David Burren 26:22 every now and then I've had some weird things just in the last couple of days where I will, I'll be low in the middle of the night. And this is hanging out. This is not the way the world works. But it's a timing thing. With the way I've changed a few settings recently, and to do with the high insulin on board that I've had the previous night. I'm tuning that. So I've generally got rescue curves around. And I always have rescue cows with me if I'm off on a big bike ride. Exercise makes things tricky. But I generally don't go through them very often,

Scott Benner 27:00 when you talked about earlier that you had to change your settings to work in this. In this system that you use where you're you're basically you're telling the I guess you're telling the algorithm look I'm eating, but don't give me all this insulin or don't give me any of it, and then it's on you to use it as you see fit. Are you still doing a? What's my question here? Did you change your settings to make them so heavy that they wouldn't work manually? If you went back to just you know what I'm saying?

David Burren 27:32 No, my, the Basal that's programmed in is my default Basal. If my loop turns off, I know that it will keep me fairly flat, okay with as long as I'm not changing things with food, and so on. So know that all those numbers are traditional numbers. But I'm really confident in them and some of the other things that I tweaked, were tuning the insulin modeling. So for example, the duration of the insulin in the system and the way it decays. So that hours after a big meal, the estimate of insulin onboard is actually correct. And I found that made a big difference to how the system was automatically reacting I can make its predictions actually met reality.

Scott Benner 28:24 Was that easier when you move to the ASP

David Burren 28:28 I actually found that is I found it easier to chain and notice the differences when I went to Furter insurance. So I've used an ace Nova rapid and a Piedra and human log and fierce and Liam Jeff, we can't get the longevity in Australia. It's not even it's not approved as a medicine here, but we're allowed to import it for personal use. So I got some from a friend in Europe and have done some experiments and it's quite nice. The faster insulins the decay in insulin happens faster. So it makes a lot of these things more visible.

Scott Benner 29:08 Right. So it's interesting. So that so the algorithm, it's more precise. So yes, yes decision,

David Burren 29:14 I found it easier to make that tuning but at the same time, having tuned the system, I felt like the faster insulin. Let me move into this mode where the system could take care of most things for me. But I have since experimented and gone back to the slower insurance like human logon Nova rapid and life stays the same. Interesting. It's all it's all automatic. It does. I do go high after a meal and it takes longer to come down. And looking back in the old days, I probably would have said oh, I'm too high. I need the Bolus I need to correct and get things down whereas now I have confidence in what the system is doing and then that in a couple of hours, it'll help me down at the right point. I'll be flat in the morning. It'll be fine. Oh, yeah, the fat pasta rangelands. Give me more freedom. But I know the the slower insulins work. There is a complication in trying to compare them though because I compared my timing range for a couple of weeks on one versus a couple of weeks on the other. And they were about the same. I was thinking, hang on, this can't be right that pasture insurance supposed to be better. And then I realized I wasn't eating the same because I had the faster insulin, it's Oh, I just ate that and built it, it'll take care of it. So I will be keeping everything else the same. That's

Scott Benner 30:41 interesting. I tried my hardest to switch Arden over to one and she just had the fiasco she described sometimes as burning. But But the biggest problem is that when our pump site came off, it felt bruised. For for a while after that, the loon jab was significantly worse than the ps4, which is a shame because I also talked to a lot of people who don't have any trouble with it. But

David Burren 31:09 I was aware of these going in because a bunch of people in Europe have been using it for a while and have discovered things about them. So oops, my backgrounds just gone. That's fine. The with CSVs is Nova rapid with the addition of was it's nice in a mode as the main accelerant. And yes, a lot of people report stinging, some people will report occlusions sometimes they say the occlusions in the pump. Some of them reports that their site gets red and inflamed, and they have to change the cannula more often. Some people's report that after some random time, whether it's three months, six months, or whatever, it's like it turns into water and it doesn't work anymore an advocate back to something else. I was aware of all these things before I started. So what I did was I I mixed BS with non accelerated insulin. So if you think about Nova rapid, and VS by the same thing, but BS has some of this accelerant in it, if you mix them together, it's still the same insulin, but there's less tolerance spread around. So no doctor is going to say you can do this, but it's all completely off label. But I used that sort of setup for about three months, and I didn't have any steam. And then eventually, I changed to 100%. And I didn't have any stinging and I haven't had an instinct when it came to being objective. Similarly, Liam, Jeff is the same insulin as human dog. But with the addition of a little vaso dilator trip trip is still I think if I remember that name, right? Anyway. It's also used in some other therapies as a vaso dilator. And the general reports there seem to be it stings like hell, but you get used to it after six months, and your body adjusts and it goes away. So what I did with him, Jeff was I mixed it with Humalog. So I had a lower concentration. And I did that for a few months before I went 100%. And I haven't had any singing. I did notice some stinging early on, but it didn't last long. Sorry. One of the other things relating to that is, little Jeff is available in Youtube 100 as well as new 100. And a lot of people report that the YouTube 100 doesn't sting as much. Interesting. And that makes sense because the accelerant in that is the same concentration for you 100 And you're 200 by volume. So when you administer one unit of the you 200 You're getting half the amount of accelerant than you would with the 100 So it's the same sort of thing of less accelerant. Right.

Scott Benner 34:31 Last thing Arden described the longevity is unbearable. Like she she lived with the fiasco for weeks and weeks and weeks before she finally just said this isn't getting any better. But the the looms if she was like you have to take this off of me I don't think she made it may be more than an hour or so. Which I found

David Burren 34:52 I exception. I don't I don't know if my success with them has been because I took it very slowly. Introduce it slowly or just with a, I was never gonna have a problem anyway. Right? I don't know.

Scott Benner 35:06 So this process you use, do other people use it as well? Or is it just worked for you? Like, like, I mean, I mean you're describing, basically not counting carbs and and not Pre-Bolus thing at all. And you're doing it just with settings. I mean, you know that sounds a little crazy. So I'm trying to decide if your view given to other people or not.

David Burren 35:33 I started doing this because other people were doing it with some of the faster insurance in Europe. And I've, I've been doing it for a while and I've been fairly vocal in our local community about the fact that I'm operating this way, because someone says, I have to carb count for this and the Bolus are a bit mean sometimes I say the Bolus, what's the Bolus? That some people have told me since that they've basically they've been emboldened what I'm doing by what I'm doing. And they occasionally don't Bolus for some foods, and everything works. And some people don't Bolus anymore, but they do announce most of their foods or they announced the big meals. So there's these compromised lines. Because one of the nice things about this is you don't necessarily have to put everything in go completely hands free. You can do any of those stages along the way. And it's been surprising for me how many people just pipe up every now and then and say I Yeah, it's working for me too. And it's not okay.

Scott Benner 36:44 Well, we can I guess you can kind of post date a Bolus in loop. So if Arden's taking in something that I think is like, has a lot of fat in it, or it's been deep fried or something like that. Those sorts of foods, if she makes a Bolus, and Pre-Bolus is her meal, and then tells the loop, I don't know an hour from now expect 20 more, you know, the impact of 20 more carbs, for example, I find that gives the loop the autonomy to push harder when it sees a rise than it would if you didn't put these, you know this empirically in the future. That works really well.

David Burren 37:28 Yeah, I, I used setups like that early on, to try and understand what was going on. And that works quite well. A couple of things to talk about there. So there is a strong sense of yes, this stuff works for me. But maybe it's just that I'm afraid. I don't mind being called the freak as long as it's got us doing it with a smile on your face. I know quite a few other people. I've said it's surprising. This is working for quite a few people. But there's also quite a few people who say, Well, no, it doesn't work for me. I've tried that and it doesn't work. Now, I don't know if their bodies are different. Maybe their bodies are the same and then just not holding the mouse the right way. But I think that's less likely, then we are all different because that's the nature of diabetes. We're all different. I know quite a few people in Europe as saying the totally hands free stuff works. But you have to be using looms, you have to work. And you need all of these settings. And some of them use fairly aggressive setups where they enable some of the automation in Android APs. So for example, when you're going high, it changes the rates and says we need a stronger profile to try and fight it to bring it down. And essentially they start implementing another level of loop algorithm on top of what the system is trying to do. And that sort of works for them. And I tried doing some of those things early on, but I found it often overreacted. And for me, I found it was better to get the base algorithm doing the right thing. Now, there's a bunch of people who've made variants of Android APS, there's a dynamic ISF. Boost Ami. There's a tsunami, there's a bunch of different variants where people have been changing the algorithm to make it more aggressive. So it said, Oh, it looks like we're getting food. We're going to change the rates and dose for for the next half hour or do whatever changes. And if you've been using a lot of insulin lightly, we're going to assume that you're more insulin sensitive and dynamically change things. People have been doing all sorts of experiments. And a lot of people are quite enthusiastic about other systems that they're not mainstream yet they're still experimental versions on the site. I'm probably the unusual thing about me is, I'm managing to do this with the base, the standard stuff that's been around for a while and not using those advanced algorithms. Yeah. I didn't mean, I didn't mention the last clinical trial I was involved in, which is over which was using Android APs. And showing that, yes, it's safe and effective, and we get good clinical results. We're lining up to do the next one. And I mentioned before, the researchers tend to look at what I'm doing and say, we need to work out how to do that. You can guess what the next trials about.

Scott Benner 40:46 They're gonna try to figure out why you're not you're not having to Pre-Bolus your meals.

David Burren 40:50 So we're gonna have a whole bunch of people in two countries who will be doing that, in a randomized control trial. Wow,

Scott Benner 40:57 how long does that take to do that? That study?

David Burren 41:02 It's gonna take about two years to run, I think.

Scott Benner 41:06 How many people will be involved in it?

David Burren 41:08 It's less than 100. And they're not all running at once. That's why it gets spread out a little bit. But people will be involved in the trial for over six months. Ah,

Scott Benner 41:17 wow, that's pretty great. When they get that when these hospitals get this information, what do they do with it? Right, because it's not like, it's not like, Android. APS is a company, you don't go back to them and say, here's what we're learning you there's not a there's not like a dedicated group of a half a million people sitting in a circle waiting for you to come back with it and tell them what to do. Like, what happens when you get the data? Is it just inform more research? Or you know what I mean? What's it? What's the goal of it, I guess?

David Burren 41:50 Well, they call it a hospital. That's the sort of hospital I'm working with is actually not a hospital. It's a Medical Research Institute. Okay, that happened that happens to have patients and run endocrinology practice and do all that stuff. And most of the participants in trials, they do lots of trials, most of the participants in trials come from their client base. I see.

Scott Benner 42:17 Okay, so they have things they're trying to, to move forward as well.

David Burren 42:23 Yeah. And certainly, the results of this stuff gets fed back to the community. Because this stuff is used in multiple, by multiple software systems, it's used on some of the iPhone systems. So the three MPs X, for example, that same algorithm. And there's a general feeling of everyone should be able to benefit from this because the algorithm that's been used is not some secret sauce, not hoping that type zero have made up in the lab and or am I ever made up in a lab and not telling people exactly how it works, because that's their secret sauce, this is all open source, everyone can see what it's happening. So hopefully, new products will come out and be able to take advantage of this because this stuff is really making life easier and better for me and for lots of other people. And it needs to be able to do that for a lot more. Well, everyone deserves one of those systems.

Scott Benner 43:28 Yeah, that's the real goal isn't it is and what I was thinking earlier, while you were talking is even though the even though the retail systems are all really relatively new, in the last couple of years, it's still kind of astonishing that they can mass market, put it on people and get results like that. Because I mean, like what you're talking about is I have a system, but now I significantly understand the implementation of how it works. I significantly understand my settings, like really specific stuff that you put a lot of time and effort attention to, while other people are just like, look at buying this thing. It's on I wanted to go and they're having reasonable like results for the most part. And that's astonishing to me, like, I don't know how you make something that that needs this level of detail. And yet, you know what I mean? Like you don't ask the people what they eat, you don't ask them if they're hydrated. You don't ask them if they exercise if they don't exercise and people are, I don't know, it's amazing, you know.

David Burren 44:32 I do still tell my system when I'm exercising, I tell it to change targets because I'm managing the insulin on board. And I think most of the commercial systems have that whether it's ma PS has, you're going to ease off or a boost. It's basically gotten a braking and accelerator function and control IQ has exercise mode. And

Scott Benner 44:54 what I meant is that you can't you can't know that when you hand something out to the masses. they're not they're not they're not all doing it the way you are, you know what I mean?

David Burren 45:03 And this is the big compromise that we're all dealing with. And this is why the commercial systems like this, it's one of the reasons why the commercial systems don't have all the functionality that, for example, I have access to because they've had to go through the regulators, because the regulators say this needs to be safe or not kill people.

Scott Benner 45:27 And for everybody, not just people who will take a ton of time to understand it. But you know,

David Burren 45:32 that, unfortunately, some of those regular sheet decisions, I think sometimes because they don't, it may be because they don't always include people with diabetes in the decision making process, I think they sometimes end up with less safe things, such as the examples of the Medtronic system. So they had the first commercial, closed loop. And it's basically, oh, we've been working too hard with I've been giving you so much extra insulin, and you're not coming down. So I now need to stop and drop into manual mode and stop helping you because it's obviously not working. That was some bean counter said, Well, the best thing to do. Whereas if I'm sick in bed with the flu, I want the damn thing to keep delivering insulin. And to help me get through this problem.

Scott Benner 46:27 Yeah. Yeah, well, no, it's 100%. I mean, all of them are, I'm assuming, at some point, drawing a line in the sand and saying this is this is, as far as we'll, we'll say, we can help. And you know, if something happens past that, it's got to go back on the user.

David Burren 46:45 Yeah, and I think some of those fall back on the user have been a little bit primitive, in terms of, well, that's the way it used to work when you had a manual system, or we just say, or the user take care of it again. But the user at that point has gotten used to it doing a lot of work for them. So it's suddenly a bigger drop out for them and it becomes less safe. So finding a compromise on all of this is a challenge for everyone

Scott Benner 47:09 Arden's a college now, and just last night, she had a meal a while she was, you know, she's in a room working. And I think I'm watching it, like Get away from her. And I sent her a text, and I don't think she saw the first one. And then she gets this rise that just goes 141 5160 on my garden, you know, but you didn't put in a secondary Bolus if the meal was and now I'm in a bit of a loss. I don't know what she ate, you know. So I'm like, if the meal was heavy in this, or this, you know, you forgot your secondary bowl. She's like, well, it wasn't. So I'm just going to make a correction here. And I'm like, okay, but I didn't see it working. And now she's fighting with it for a few, you know, a few hours in the late evening. And she just, she loses the fight with the Bolus, and she loses the fight with being tired. And she just goes to sleep. And, you know, I tried to wake her up, I, you know, it's a higher blood sugar, not a lower one. So I'm like, alright, well, you know, I sent her a text like, Hey, you got a Bolus, again, I don't hear from her, I finally called and woke her up. And I said, Hey, you know, put put some insulin in here. But at that point, David, I don't know what to tell her. I don't know what she ate, I can see what the the algorithms been trying its hardest over the last couple of hours. It's not working, you know, it's just keeping her level at a higher number. I know she needs more insulin. But I don't know how much and I'm tired. And you and I got to we're gonna do this. I'm gonna be up early in the morning my sunlight or doing something later tonight. Like, I've been sick recently. And like, I got asleep a little bit here. And so we put in enough insulin, we weren't as aggressive with it as I would have been if we were wide awake and looking at the same example. But she woke up this morning at like 110. And, I mean, on any manual system, or if a system would have kicked into manual, she would have been, I mean, I'm assuming she would have been 200 Plus, and it would, and she would not have woken up with any kind of resolution to the blood sugar. This doesn't happen to her all the time. But it's your point about you know, I know this thing's gonna do what it's going to do. And I'm going to end up okay. It's an amazing benefit, you know. So, anyway, what, what else did you want to talk about? What, what? What made you think I want to come on and talk about this on my podcast?

David Burren 49:28 I think it was probably something I posted in the Facebook group that you responded to and thought he sounds like an interesting person to talk to.

Scott Benner 49:38 I definitely do that. But I have to admit, David, 45 minutes into this. I don't especially understand why you don't have to Bolus. I don't I don't know that I Okay. Yeah. I don't know that. I understand why it's working for you or the, you know, like if somebody's listening to this right now. And they're like, Well, I don't want to Bolus for For like, this sounds great. Like, what do I do?

David Burren 50:02 Yeah. I don't have easy answers. But I've got some things that might help understanding a little bit. Because I've talked to a lot of people who say, How can this how can this work? This person personnel at the CGM is always lagging behind. And then when when in when we inject the insulin, it's going to take a while to happen. So when the system sees the arm going up, how can it react in time, it's hard enough for me to Bolus and Pre-Bolus enough for something to act in time. But I think part of it is the way the dosing works. Because it does all these predictions, the RF one algorithm, when using loop, you see the predictions of where we're going to go. And, or I should say the prediction, singular prediction, it's a line that goes off somewhere, and it might go down below zero at some point, then come back up three hours later and go sky high, which doesn't make any sense. Because if the line went that way, you'd be dead by then. The RF one algorithm draws, that's called an announcer ensemble forecast multiple lines. One of them says, This is where we'll go. If you didn't eat any of the food you just told us about. This is where you'll go, if you did eat the food. This is where you go, this is where you'd go. If we turned off the insulin now. It makes a bunch of predictions. And there's another line of this is where we go, we'll go with UAM. So when we think you're going based on what we've noticed about the food, that's where the longer seat, there's these massive lines that go up to the right on the graph. A lot of people look at that in different colors, they look at it and say, Well, how do I know which one is right? Well, the system doesn't know which one is right, because those are all different possibilities. But it plays a safe game, so that any of those are going down into hypo territory, it's gonna make this decision to try and keep you out of there. It makes a guess as to which one of those is more likely ending point. But that guests may change in five minutes time. Every five minutes is growing new predictions, and saying, Alright, looks like we're going over there, it looks like we need this much insulin to try and get us back to target. And then, if we ever calculates the we need, oh, looks like we need three units of insulin. And then it might deliver one of those or one and a half of those. And then five minutes later, because I know, I know, no, no, we need 10 units of insulin, if that would start putting some more in. So it actually does that at a much final level. So if I was looking at my CGM and saying, oh, it's struggling along, it's going up and down, it's going up and down at about level, or is that going up? Oh, the next rating comes in. How's that going? Yeah, I think that's going up a little bit. I'm going to have to Bolus the automated system. By that point, we'll have been doing a bunch of little micro boluses. Along the way, saying looks like we might be going up we'll need a little bit. Looks like we're going up a little bit more, we need a little bit more. The point is those little bits of insulin already in your system and working. So when we're looking at things manually and saying, Alright, I need to dose now. We've introduced a big delay, and the insulin is going to have to play catch up. So I think that regular dosing actually helps the system stay on top because it's taken a few choices kind of face to face along the way and added some insulin into the system. already.

Scott Benner 53:49 It's almost like it works better when it has the insulin working, and it can adjust by taking away instead of

David Burren 53:57 well. We can never take the internet well. No, no, no, not

Scott Benner 54:01 not taking away what's in there. But taking away basil in the future. Do you know what I mean? Like instead of you using a unit of basil over an hour, it's sometimes it feels like if you just gave it the unit, and then let it decide, okay, well, I'm I'm going to I'll turn the basil off. I'll put it back on 2.2. And I'll bring it like you give it a lot of autonomy that way. And I have noticed that it, it works well. When it has the the insulin at its disposal and then kind of works backwards from that. I don't know if that makes sense or not. But

David Burren 54:35 it it sort of does in a nonliving environment. It will start off in the assumption that the basil is just constant. Whereas now now we know we can turn that off. Turn it back on in the future. Though historically endos often talk about your Basal Bolus ratio or 50 50% is a nice balance and Crazy Talk as far as I'm concerned, for a start, if you're eating, if you're having a high carb day, you're gonna have a lot more Bolus, that your Basal is not necessarily going to be more. But then it doesn't really matter if it's a Basal or Bolus, it's just insulin that goes in doesn't matter if it gets given as a bunch of separate bonuses, or as increased by basil. It's just insulin, as long as this system of tracking when it goes in, we're getting the right amount at the right time, that mix of which one it is doesn't really matter. Yeah. Which makes it a little bit hard when you have an endo who says, but the percentage,

Scott Benner 55:38 but I know something about the setup of on the pod five, they want it near 5050. But then the algorithm almost immediately makes decisions after that and moves things around. So I don't think you know, it's something about the way that one set up. It's important, but you know, when you go back and look at the insulin, it's not, not always going to be like that. Yeah, I don't see why that's I don't understand why 5050 is important. That sounds arbitrary.

David Burren 56:08 Yeah, I think it's a historical artifact. When people were dealing with Basal and Bolus injections, that was sort of a guideline as to this sort of works. For most people. That's a good starting point. But I don't think it's the goal that you need to try and get back to right.

Scott Benner 56:24 Now you need Basal you need and you need the bang, you need the Bolus you need. That's it. It's just

David Burren 56:29 well, in today's world with the pumps, adjusting things up and down, you just need the right amount of insulin at the right time. And the basil and Bolus is all the same stuff. Right? You know, whether you take away what we're going to give it by default by basil in the future, which is what you were talking about, and answer the same thing?

Scott Benner 56:50 Well, I think, too, I want to I want to mention that the idea of like, I don't understand, why do why do I notice things working very immediately on a on a looping system. When we know the data is behind from the CGM when the insulin takes time to work. I don't know how to describe why that is. But I do know it's true. Like I do, I do think it's just, I think the algorithm by by guessing at the future or predicting so many different possibilities in the future, I think it's somehow shortening the, the distance between what's actually happening in this moment, and what the data can tell us is happening. Because you can tell me if you've seen this, too, you can look at a blood sugar that's not moving, right? And the algorithm is trying it's given like with with loop, what is it giving you like I think 40% of what it's suggesting. So it suggests a unit, it gives you point four, it waits five minutes, there's still point six less than it hasn't given you, it gives you another like 40% of that it's making those Bolus as long the way you look and go, this is not enough, it's clearly not enough. If you manually in that moment, push up the Basal insulin, or you manually in that moment, give all the suggested insulin, the blood sugar almost turns, I don't want to say immediately. But it's shockingly quick after that, like it really does feel like cause and effect in a way that you don't expect. I've never seen that manually working with an insulin pump. But I have I've seen it so many times and loop that I trust that that's what's about to happen.

David Burren 58:28 And I think that's largely those earlier doses that I was talking about is been giving you partial doses along the way. And those are all adding up.

Scott Benner 58:36 Yep. And you're and you're this close, but it's just not tipping. And then you just push a little harder, and then all of a sudden, I see it. So some

David Burren 58:44 of the some of the things that I was adjusting when I was tuning my system and making it more effective is some of the safety limit. You talked to there about the 40%, right? So in the IRF, one system, there's some controls for what it will do 50% of the calculated insulin, it will do 50% Now and then in five minutes might do another 50% of the new production. But there's also a limit of it's essentially borrowing Basal from the future calculates this is how much basil we need. And then they'll say, All right, I can use the next 90 minutes of that I can bring forward into this initial dose. Yeah. Or maybe the next 45 minutes or maybe the next 120 minutes. So you can make it more aggressive and borrowing stuff in the future. And if you do that too much and your settings aren't right, then it can end up potentially overdosing and you'll go low later, right. Right. So the the safety limits are set relatively low initially because they don't want to overreacting so it was watch the system and see that I can be that I'm going up and I can see what it's dosing. And I don't think it's doing enough, I look at the calculations, there's all these messages coming out in the logs. If you go and look at the right page in the software, it says, we've constrained this because of this. And it's alright, I'll increase the safety limits a bit. So there were some tweaking, they're not just changing my, my ratios, and so on, but also freeing up the system. So it was gonna make the right choices without just opening the floodgates and letting it overdose me too much.

Scott Benner 1:00:31 So let me ask you this. There's a person like yourself, who understands all this and donates the time to it to help themselves out. But generally speaking, how many people do you think are doing this? Even across the globe? Like, how many people with type one do you think are using some sort of a do it yourself algorithm?

David Burren 1:00:53 Can it be that many? 10s of 1000s at least

Scott Benner 1:00:58 okay. I mean, that's, so that's one of those things. We're like, that's a substantial number. Until you look at the whole of everybody who uses insulin to stay alive. And then you're like, well, nobody, nobody does it. Why do you think that is? Because, I mean, Arden has been looping for years now. You know, she took a break and did on the pod five for a while, which worked exactly the way we expected it to. But she really did not want to carry around the receiver that was necessary for so bright before she went back to college. She's like, can I please switch back to to loop? And I was like, Yeah, that's fine. She's like, I just like it on my phone. And it's interesting, because she doesn't really have a lot of the concern about the, you know, the switches in the lever, she was just like, this is fine, or this is fine. And in her mind, it came down to carry a thing. Yeah, I know how well it works, David, like any of them, like but why can't we get people onto them? Like, why? Why is there not like a mass get any mean? Like in your Do you have any idea? Well,

David Burren 1:02:04 I think the commercial loop systems. The good thing about those is they become more accessible to more people easily because the doctors can just basically scribble on the books and say, right, we need to get you this and get you set up, and they've got a better chance than not having access to it at all. One of the things that's changed here in Australia is halfway through this year, we finally got CGM subsidized for everyone was tight one, right. So instead of paying 330 Australian dollars for a month's worth of sensors, we now pay $32. And, strangely enough, that's making it a lot more accessible for the companies to introduce their loop systems, because now Medtronic is saying, Well, if you look, here's what we have to do is that the subsidy is we have to specify which PGM system we're using. So Medtronic is saying, if you walk into the Medtronic CGM, we will give you a Medtronic seven ATG, we will upgrade you. Because they get to sell sensors. And everyone gets the benefit along the way of all, the closed loop system. ipso Med, you're in Australia, I had a little crypto pump. And that's they've now got cam APS, which is another closed loop system that runs against that pump that's now rolling out in Australia. And suddenly a lot more people are saying, Oh, I've got access to this stuff. Great. I think I think the uptake of people who are using closed loop systems, I think it's going up dramatically. And we want to see some more statistics and polls on that to sort of see what's going on. I ran a poll a couple of years ago on the number of leakers in Australia a couple of 100 at the time, but that was all due itself stuff.

Scott Benner 1:04:16 Yeah, I mean, here in America, where things are, I mean, these a lot of these different devices are readily available and, you know, number of people have coverage that would allow them to get them. I just, I don't know, I, I know. It's not how things work. But if this if this was me, the minute This was available, I'd be I'd take the day off and just say to myself, Well, I'm gonna sit down and figure out how to make this happen right now. And I don't I don't know. I don't know why. There are so many more people who will never pump even versus the ones who will and there are, you know, at all and all of this stuff in between.

David Burren 1:04:57 That I think of it as a sense of inertia. Like for me, my my endo suggested quite a few times. This pump might be good for you and I know how this system works. I'm still alive, it's running fine. But in my clinical results when I got access to a seat to a CGM, and I started being able to look at the data myself and see what was going on, it was, Oh, this isn't good enough.

Scott Benner 1:05:24 Right. Nick, well, back then you just alive is your Mendoza line, like, I'm not dead. This is working well.

David Burren 1:05:30 Well, I'm not dead. And I got an HBO one see from my doctor when I saw him. And it was a good one this time. So he said, Come back in 12 months time, and oh, look, it was a bad one. It's come back in three months. And it was, I didn't know what I was doing differently. Because I didn't have the tools to see what was going on. Yeah,

Scott Benner 1:05:49 even that was random. Hmm. So and yeah. So when you found yourself in that situation, if you were being given the golden ticket, if you don't have to come back for a year, it doesn't mean that six weeks from now you're a one see wasn't on its way up? And you had no idea really? Yeah, I

David Burren 1:06:04 had, I had no idea. But I've, I've got my path results back to 2000 or so. And I can see my HBO one. So he bounced around and got up to 8.1. It was down at seven, it got down to a massively low six when I started on the pump, and it was gradually started creeping up again. But after I started looping in 2017, it went down to 5.8. On down to 5.6. It has never been as high as 5.6 cents. Yeah. So it ranges between 5.0 and 5.4. And you're active

Scott Benner 1:06:43 as well. You have you're paying attention, you know, all that stuff. Yeah.

David Burren 1:06:49 I mentioned before my timing range for 70 to 140 is around 85. But my timing range for 70 to 180, which is the more traditional clinical range is about 95%. Right now. And my time below 70 is about 2%.

Scott Benner 1:07:10 You know, it's an I say, I don't see, we don't see it. I mean, lows just are very infrequent,

David Burren 1:07:17 you know, so So I feel very comfortable with where all by senior is I know day to day will go up and down and bounce around. But overall, I'm in a good place. I'm feeling quite good, because I actually had a scare a few years ago with them. That there are sclerosis. So partial blockages around the heart, I didn't have a heart attack or anything but a random stress. Echo said all that said no more than we went down the investigation path. And I thought I was going to have stents and all sorts of stuff. But I managed to get out of it without that. And this was about the time that I was advancing a bunch of my glucose management. And the cardiologist now looks at and says, Oh, you're fine. Great. I've got the general feeling that health wise, I'm in as good a place as I can be, right? A lot of what I'm trying to do is make sure that it's there, but also do what I can to make this stuff available to more people.

Scott Benner 1:08:18 Back then were you feeding insulin? Did you have a lot of like, Were you eating a lot to stop lows and things like that? Or well,

David Burren 1:08:27 they actually the heart issue was about two and a half years ago. But I think I'd already started fixing things. But we hadn't noticed anything. Made an ideal world, you know who maybe it's already healing. Who knows? There's we didn't find it because of how to Tech, we found it because I had a fight because of low blood pressure, which the cardiologist says, Oh, that was probably just that you are exercising more. And so we've reduced the blood pressure meds. And I was on mild dose on that. And now I'm on a half a mile dose, right. So we sort of found it by accident. So maybe it was something that was happening earlier. And it's been getting better through this. But it's certainly notably been getting better, because we've been looking a lot more closely our stuff over the last few years. And everything just keeps staying stable. And that's

Scott Benner 1:09:28 good for you. And that really is wonderful. You don't do you have any of what we consider. I don't know issues from diabetes.

David Burren 1:09:38 We're trying to avoid the complications that weren't I want to

Scott Benner 1:09:41 say complications. But do you have any do you have anything that you talked that you are dealing with?

David Burren 1:09:48 This there's no no. I saw my ophthalmologist a couple of weeks ago and she said Because very nice relinking accent and I'm paraphrasing slightly, but she says there are no diabetes in your eyes. Oh, good. That's what I like to hear. There's no effective diabetes, but it sounds funny the way she says it, bro. And it was going back in 18 months out and I'm in fact thing. Her particularly because of congenital thing, we found one of my optic nerves we found years ago, and we started trading that we wouldn't have found it if I wasn't having my regular diabetes examinations. So I believe in in my eyes is not an issue. But I feel that my eyes are healthier than they would have been without diabetes, because we wouldn't have found this thing.

Scott Benner 1:10:43 Yeah. So maybe saved you from a from a different issue.

David Burren 1:10:47 Yep. So the cardiologist says, the heart stuff is not related to diabetes. It's just stuff that happens when you get older. Although he's only ever known me when I've had normal HPMC, etc, levels. So I don't know if it was something in the past who knows? I've got most of the hand physiologists said, I've got the early signs of something that may turn into contracture of one of the tendons on my hand. But it's something that they can fix. It's not a thing is it's just an early sign that maybe that might develop, but that's about as close to a diabetes issue is I can imagine it sounds.

Scott Benner 1:11:32 It sounds pretty terrific. Honestly.

David Burren 1:11:35 I'm very lucky. Yeah.

Scott Benner 1:11:37 Is it in your family at all? Type one? No, no,

David Burren 1:11:40 no. Well I, I remember, you know, stories about there was an aunt or something or great art, whatever he died or something, but back then. Maybe in the 80s. Going back in time, from what people knew about 10 years ago, if they'd gone back, they might have said she had type two. But if they'd gone back now and done better tests, they might have said, Oh, she actually had type one. Who knows?

Scott Benner 1:12:11 Right? How about other autoimmune stuff?

David Burren 1:12:15 Like celiac disease? Celiac disease is the only thing and that came on after several decades. Okay, so that's the closest thing to a second autoimmune thing that I've got for

Scott Benner 1:12:26 you. How about in your family? Do you see any other thyroid stuff for digestive issues? Anything at all with people? Not? Not yet? It's interesting. Do you have children again?

David Burren 1:12:38 No, no, I have nieces and nephews, I can wind them up and hand them back. I don't have my

Scott Benner 1:12:45 listen. There are days that sounds right to me. Interesting, okay. Has it been? I mean, you said you, you've done wildlife photography and other things like that. I mean, it doesn't sound like diabetes has stopped you from doing things throughout your life.

David Burren 1:13:05 No, not, not really. If I was looking at going on a Australian Antarctic Division runs supply trips every year down to the bases in Antarctica. And they have some humanities births on there, where basically artists can go along and record what's happening, and so on. So there was an opportunity as a photographer to get on to that. So I thought this is exciting. looked into that. And as soon as you've got diabetes, you're not eligible. Because they make you go through all the same medical things, as someone who was going to overwinter and stay there, right. And if you don't have enough insulin, you're gonna die, basically. So I was basically not not eligible. So that was a little bit disappointing. But it guess what I found another way, I've been to Antarctica four times now. Really? I run photography trips down there.

Scott Benner 1:14:01 You make the rules so you, you can allow people diabetes to go.

David Burren 1:14:06 So yeah, I've that also called the travel bug. So I've been to lots of places around the world. Whether it's, you know, jungles in Borneo or up in the Himalayas, with snow leopards in the middle of winter. And most places I go, I need to worry about keeping my insulin. cool enough. There. I need to make sure it wasn't going to freeze overnight. Yeah. So yeah, I feel that I live my life and diabetes has to come along for the ride. That's one of the other things that you were asking before, what we what we should talk about. One of the other things that a lot of people might find interesting is Something that I'm not responsible for, but a lot of people seem to associate my name with. And it's the NuBus G six transmitters. So the X column G six transmitters, they run for 100 days. And then they turn off mailing lists. And in the early days, people were able to cut them open and replace the batteries and seal them up again, and then they'd go for another 100 days. But Dexcom, change things so that you can't do that. So, I know some I know some people who've did some engineering, and they basically they modify G six transmitters now. And we went through a phase where we're trying to work out how to get this working, I managed to get a bunch of people in the US, including some of the people from the Facebook group, I donated all transmitters, and we sent them over here and then basically pulling them apart and using them as test beds and how to make things work. So what they have now is a system where an old Dexcom J six gets recycle, and it becomes an A novice GC. And the NuBus comes with a battery that sealed in the bottom with clear silicone. But when it's time to replace the battery, you can actually see that's where I dig in and dig out the battery and I stick this other new battery and never seal it up again. And it automatically resets. These are really convenient because they have a bunch of other advantages. The transmitter doesn't timeout after 100 days, pumps out after 190 days because they have a bigger than normal battery. And it doesn't stop your sensor after 10 days, it stops your sensor after 60 days. So I can run my sensors for 20 days and not have to do any restarts along the way. That's really convenient.

Scott Benner 1:17:05 And you do you notice that it holds up as far as accuracy goes,

David Burren 1:17:10 Oh, it's the J six. They didn't change any of that stuff. Yeah,

Scott Benner 1:17:13 right. I just been having the wiring for that long. Oh,

David Burren 1:17:17 with J five, my record was 53 days. What I'm doing now is I used to run sensors for as long as I could, because we had to pay for them all ourselves, and it cost a lot of money. So you'd be saying alright, is it unstable yet? Is it time to change it? Now I can go another day, and then suddenly it goes out the window. And right now I've got this outage I need to start up. So I set up something where I could, if I've got two transmitters, I put in a new sensor with new transmitter and I've essentially got another program talking to it and I start the session on that transmitter. And then when it's when it's warmed up and it's ready. Hopefully before the old one has completely died. I tell my loop system use that transmitter instead of that transmitter. And it gets gets good data to I don't have to warm up as long as I've done everything right because it's already warmed up and had the first day of weirdness out of the way before I switch over. So now that we've got things subsidized, and they subsidize them for essentially one every 10 days, I'm actually putting a new one in every 12 days. And then I'll I'll switch over to the new one. After another day or so, once I know it's stable, and it's really nice being able to see two lines and say no that had old sensors going weird or the new sensors going to it. Suddenly, it's not just finger pricks and CGM. We've got fingerprints and two CGM so that we can compare. And it means that my the amount of time my system is actually making decisions and looping is pretty much 100% all the time, because the CGM never actually has to disconnect and warm up, right?

Scott Benner 1:19:07 Do you think that G seven will cause problems for the DIY community? Or do you think people will

David Burren 1:19:12 you know, not especially the g7 is essentially doing some of the same stuff because each, each sensor has its own transmitter. That's where That's where this new stuff comes on. Where after 10 days, it's not the new one. But I'll keep using the old one for 12 hours. Yeah, so it's essentially doing the same thing. And but it automatically switches over. Now it it'll be harder for people to try and extend the system in the way that we've managed to do with the newer stuff. Now the reason people associate me with somebody whenever stuff is on my blog, I posted an article saying these amazing thing and works really well because I've been testing it for them. And I get people sending me messages saying Hang on, can you sell me one? It's not mine. I'm not involved.

Scott Benner 1:20:06 I'm just using it,

David Burren 1:20:08 talked about it. But the guys who distribute those, by the way, that they're not selling them for profit, they're pretty much essentially giving the way they get donated trans old transmitters that are getting recycled. And they're just set up little machine shops that have laser engravers and everything out. And it's all automated home workshops, stuff from people who have diabetes, hell bent.

Scott Benner 1:20:35 That can't afford to do it.

David Burren 1:20:37 It's hard, hard to imagine how any of that could be applied to a G six, where everything's integrated, and then applied, and then you take it off, and then it's done. G seven, obviously. Yeah, sorry. So I am thankful that we have subsidies here. So if I have to use them one every 10 days, I'll be able to afford them.

Scott Benner 1:21:01 No, it's amazing. I've talked to people just you know, in the last two years in Australia, who are like, I can't afford anything to those same people sending me notes and say, hey, look, I have a CGM. Now or I have a pump now. It's like, it's amazing how quickly things are kind of moving there.

David Burren 1:21:16 Yeah, exactly. So I think I expect people will be able to use G seven in the with the open source software that Do It Yourself stuff. I believe that's already happening in your head to talk to them.

Scott Benner 1:21:34 Yeah, well, I mean, it's been out for just a handful of weeks now, right? In Europe. And I mean, my expectation is, it's going to be the next couple of months, it'll be in the US. So you're gonna start seeing it everywhere pretty soon saw as the FDA, I don't know what the hell they're, they're holed up. It's but as soon as that goes away, I guess we're gonna see it here.

David Burren 1:21:57 Now in Australia, because most people are getting it through subsidy. I think introducing it here. It's not as though it'll get introduced and sold will cash sales. And then eventually added to the subsidy, I think they'll be lining everything up so that when it comes here, it'll be with the subsidy. So I don't know how long that's going to take. Yeah. But we've only had G six here for about two years. I think you've had to do six for longer over there. Yeah.

Scott Benner 1:22:28 I know. I hear Canadians often talk about the feels like a chasm of time between when new stuff comes out. And they actually got it. I guess it's similar. I don't know. I wish I understood more why that happens. But I just don't. You would think that people would diabetes everywhere, right? And there's governments you can charge for this stuff. Like, let's get going.

David Burren 1:22:52 Yeah. Life is life is multifactorial. So there's a limited market in Australia, compared to the US. So all their costs for going through and setting up things with the regulators and importing and doing all those things. There's more overhead. So are they going to make enough sales for it to happen? Now that things are subsidized, if they can get onto the subsidized list, it's easier for them to say, alright, we're going to have a steady supply. Right. So hopefully, that will enable things to move quicker. But But yeah, dealing with different regulators in different places. does add a lot of time. Yeah,

Scott Benner 1:23:32 it really does. And in the meantime, there's people who mean, you would think that if you were the government, why would you not say, All right, well, maybe we were not the maybe we don't have as many people here with type one. But let's make it attractive for these companies to come in and service, at least the people that we do have. That part is a little interesting, you know, like,

David Burren 1:23:53 the other thing is only on Jeff, and Jeff has been available overseas for ages. And, and we're over here saying it's really great with important time it used it and it's great. Why can't we actually get it properly. And we're saying the same thing. We had years before fierce was approved here and then still years before it actually became available. But when it becomes available here, again, the drugs subsidized through the pharmacy benefit scheme for PBS. But the price that the manufacturer gets is controlled by the government. Basically, the Australian Government doesn't pay a lot for the drugs. Right. So that will play into are we going to make enough sales at that price to make it worthwhile to bring it in? Yeah. Novo got to CBRE approved in Australia a few years back. They don't actually import it, sell it because they're not going to move enough of it. They sell that I rise adag that mixed one. But not not peintre saber, just as an example, someone said, No, it's not going to be worthwhile. And there's all sorts of weird things. Because there's the way the drug subsidy stuff was set up. There's, you can't introduce a newer, or a different form of the same drug. You can't have too many forms of there's all sorts of controls without having to get a basically get less money for the drugs. And it's all this competitive stuff built in. But that actually meant a few years ago that when FISP was introduced here, it was available in out because VSP is actually insolent as part. So it's not actually a separate drug. It's the same as Novo rapid, which was already in the list, which was available in prefilled, pens, in pen cartridges and in vials, okay. And then faster is faster acting insulin ESPAR is available in pens, and vials. But they didn't introduce pen cartridges, because that would be too many. And then they wouldn't get as much money from the government for the drug. But it's complicated, it's

Scott Benner 1:26:23 dizzying. Yeah, it really is, um, just, you know, people need stuff, it'd be nice to find a way to get it to them in a way that is affordable, and unreasonable and easy. You know, it's tough to RDS have to have diabetes. You know, you start jumping through hoops to get things accomplished. And you can see easily why it doesn't have I mean, to take it out of diabetes for a second, my mom just moved with my brother. And she had to live with him for a little while, while she established residency in a new in a new state before she could go to this place that she wanted to go to and get the assistance she needed. And she, you know, she wanted and everything. And the amount of phone calls and paperwork. If my brother and his wife were not doing this work for him, my 80 year old mother could not accomplish any of this, like there is a system set up for people that they functionally can't take part in. And you have to have somebody helping you what if you don't? What if you don't have someone helping you? Like, then what happens? You don't I mean, like, it's, it's fascinating.

David Burren 1:27:30 That actually opens up another concern with the fancy technology we use these days. What happens when we get older? Yeah, I think and we go, and we're going to aged care. That's, I mean, we have quite a few loopers in Australia who are in their 70s. And I think some are in their 80s. Now, and it's something that people talk about what's going to happen later on at some point in my life, and I guess it could happen to all of us what happens if I'm involved in accident, I have a friend from university who has an acquired brain injury, and later develops diabetes, and isn't able to deal with any of this stuff. Everything has to be through a carer and what's going to happen when the family carer gets old. So that feeds back into winning to make this technology as accessible to people as possible, so that not just Can people without the background and experience that say I have been using, but also that someone looking after them who isn't especially skilled and more comfortable.

Scott Benner 1:28:41 No. And I think about that. I mean, you have diabetes, I'm sure you think about it for yourself, but as somebody who's looking at a child with it, I think about that constantly, because my daughter is going to be older, and in need of help at a time where I won't exist anymore. That's hard to deal with, you know, like, is she going to meet a person who will help her or, you know, will she have enough money to be in a healthcare system that can help her also, I've seen my mom in that health care system. And due respect, they're not great with giving you a pill when they're supposed to sometimes, or you know, managing things that are not nearly as complicated as diabetes. So I don't know. It's, well frightening idea.

David Burren 1:29:23 It still comes up every now and then but we still we are hopefully moving away from the world where someone would go into hospital for and they have diabetes for them unrelated thing and the doctors would take and the nurses would take their insulin away and then it's our youth you need to have your evening insulin there. But you haven't given me a food yet. The food's not here. No, no, we need to chat this now. Or you have your food now. We'll come around later with the insulin. All of this stuff is totally in integrated into into our lives that, like I have a colonoscopy coming up in a little while, and I'm thinking ahead to when it comes to what day is it on? When am I going to be starting my CGM sensor? Where is my prompt site going to be because I'm going to be lying on the bed this way. And they're going to need to put a cuff there and put a line in here. And it's no good if I have technology in the way. So all this stuff is tightly integrated into how we live our lives. Yeah. And,

Scott Benner 1:30:34 anyway, alright, you're bumming me out there.

David Burren 1:30:38 It's okay, I'm actually participating in a summit in a couple of weeks. One of the big research bodies here is having a series of panel discussions and one of the things we're talking about is how this stuff integrates. And the reason that's in my mind is that kind of some of the things we talked about before, some of the design design decisions behind this technology are often made by people who don't actually live with and don't actually realize that, oh, it affects this, or that means you're going to put this site there. For me and Omnipod, I use Omnipod dash every now and then. Not regularly, but I've got a couple of boxes. And if I'm going for watersports or something I might change to a a pod on a waterproof looping phone for that weekend. But I need to be very careful about where I put the pod. Because it's very particular about the radio reception. If someone's dealing with the PDM, which is the insolent way of doing things, you pick up your PDM. And you also you change a Basal or something and then you put the PDM away. Whereas me I've got the looping phone that's talking to it, and it needs to talk to it every five minutes. And if the part is on my right hand side, and the phone is on my left hand side, and I'm a big bag of water right in the middle blocking radio signals. Things don't always work neatly and people finding that with the Omnipod five that you need to make. It's better if the CGM has good line of sight line of sight to the to the pod, it's the same sort of thing, I have to think about where my phone is where the CGM is and where the pump is. So, flexibility for me the when I'm using a tube pump, I can have my pump in pretty much the same spot every time and the tubing just goes to wherever the site is. So in some ways, a tube to pump is better for me than a pod.

Scott Benner 1:32:50 Because you have that that option. Yeah. So you'll always know where the pump is going to be. And that you just move the site.

David Burren 1:32:57 Yeah, I mean, there have been times when it's old enough for these couple of weeks, it's on my right side. So I need to make sure I put the looping phone in the pocket on my right or a pocket on my left. Whereas these days, it's just no baby every time my pump lives in little running belt has to be built. Yep, that's underneath my clothes around my waist. It's always in the same spot. And then the tubing runs along the belt and then up or down to wherever the site is,

Scott Benner 1:33:22 you know, if you tried to make this argument, the art and she'd be like, I don't know what you're talking about, but I'm not attaching anything to me. So I can't get up. It's just so interesting. What where you're everybody's perspective comes from their entry point. Really, you know, yeah, different perspective.

David Burren 1:33:40 This thing of tubes versus unsheathed I started off with an NMS pump. And I had a a talisman around my neck and an SOS, whatever tells me medical thing. So if I was going, it was in the middle of the night, I was going to the toilet or something and I had to do my pump somewhere. I would probably clip it the bed around my neck. And then the tubing runs down to where the site is. But I always had this extra thing I was carrying around and having to put somewhere or back into a pocket or something. Yeah. But yes, there was something attached to me. But when I started using the looping systems, I no longer had to touch the pump. The pump would hide away in a pocket. And my relationship with it changed. Yeah, because now now the pump is in that little running belt around my waist and including when I go to bed. So if I wake up in the middle of the night and I have to go to the bathroom, I just get up and I walk down to the bathroom. The pump comes with me I don't have to. There's no feeling of oh, I've got something's actually the tubing somewhere is comfortable with me. Yeah.

Scott Benner 1:34:50 I know some people who put it like on their bedside table or lives in the they leave it loose in the bed with them. I've heard people describe what you just described. It's interesting how it all works differently for

David Burren 1:35:01 it, find a system that works for you. And I've used different systems along the way. And that and they've all, whatever I've been using at the time has mostly worked for me at the time. But you know, when the pugs were introduced here, a year and a half or so ago there were some people other companies find people with diabetes, who are they become advocates, basically? Yes, it's wonderful system, it's changed my life, which is great, and it's fine. But many times. Some of those people, the first pump, a lot of things they described about, oh, I can change this I can change that is, you can do that on any pump. And they say, but there are no tubes, I don't have something dangling attached to me. And I say, I don't have some, I don't feel like I have anything dangling attached to me anymore. So in fact, when I use a pod, I'm restricted in terms of I need to fill it with the right amount of insulin, because there's this decision, when I get to the end, have I put enough in it to last the 70 to 80 hours, if I've put more in it? Am I going to pull some of that out and put it into something else? Because my insulin doesn't cost as much here, you can sort of say, well, I'll just using using new pod and fill it with new insulin. When I was using these new images that I imported, myself, I was a little bit more sensitive, because every drop was was money. The and there are issues, if I have a problem with my site, then I have to put a new part on. Tonight, I put a new cannula in for my pump, and I put it in and it was out that's not working, I can feel that that's completely uncomfortable. I took it off and the drop of blood comes out. And it's no, that's a bad site, I'll just put it in somewhere else. And suddenly I've wasted 50 cents, or $1 or something on an annual that's I haven't wasted a whole pod and then have to ring up and say you know all this hassle about

Scott Benner 1:37:15 So David, here's the other the other side of it. In your in America, you get your your doctor to write you for more pods than you need. And then you draw out the insulin if it's new, and pop it in the other one and keep moving. Like it's all the same. But yeah,

David Burren 1:37:29 I know. But. And there are there are ways around this we live, we each live within the constraints of existence that we're using. Yeah. But each time we use a pod, and I get to the end of it. And it's right, I'm going back to my other hub that feels like Old Faithful, comfortable territory going back to my tube pod so that that the pod to me at the moment feels more restrictive. It's less restrictive, I can go swimming, I can everything keep running. But in terms of general where it doesn't feel the same, because I'm not used to it.

Scott Benner 1:38:01 Well, you've just described exactly why all these device manufacturers are so focused on getting people when they're newly diagnosed as customers, because then this becomes your norm. And you know, it's hard to imagine otherwise, you know, it doesn't make doesn't make the other option. untenable. It just makes it different than what you're accustomed to. So and you are right, like no matter what scenario you get put in, you do find a way to make it work as seamlessly as possible with your life doesn't matter if it's a pumper. A CGM or whatever it is you you fit it in and you make it work. And then suddenly it feels like this is the option, the only option? Makes sense.

David Burren 1:38:43 Yeah. And different systems have different advantages. And I think a lot of people as you say they get locked into the system that they're using. And they don't necessarily realize that the grass might be greener on the other side of of that fence, or maybe on the other side of the highway, maybe just in the next paddock, whatever. So when I started on an LMS pump, I was using the infusion sets that my my diabetes educator had suggested. And I was using them for years. Those were the ones that I used, oh, if there's a supply issue, and I can't get those, what am I going to do? I'll manage to get some or I've got an A got out of it. It's okay. And some of our friends who are interstate they were using some different ones and they were having supply issues and all sorts of dramas. And I realized that well, maybe I should try one of these other ones. Maybe if I wasn't tied to this one, I'd have some flexibility if there was a shortage Yeah. Now, it's convenient here that all of our infusion sets are subsidized to the same level once you've registered as a pump Use a you can get any of those at subsidized price I say so so I can, in fact switch to a different pump type. If I have the pump, I can buy the other supplies. I don't need a prescription for each one. But that meant that oh, let's try the stoop cannula. Let's try the ankle cannula. I'll get a box of those and see how they go. So I've now used pretty much everything. And I found the ones that I like. And I've got to the stage that I get all secondhand pumps of different types, I've now used pretty much every type of pump on the market. Yeah, and most CGM. So my decisions about which ones I'm going to keep using is I've used some of the others, they don't necessarily feel right. But sometimes there's something that oh, that's nicer, because, for example, I started using the were they the comfort sites, which tenem now call them the very soft Medtronic call them the silhouette, the angled one. And they turned out to be about great. They were nice and comfortable. Manual insertion, which was quite daunting. But once you got that over and done with it was fine. And it actually turned out that I can pack a lot more of them in a camera bag when I'm going to Africa. All sorts of other advantages. It's so interesting

Scott Benner 1:41:28 to hear people talk about these little things. I remember when Arden was really young, and we were looking for pumps. And we were drawn to the idea of the Omni pod, a nurse practitioner who tried everything they could to scare us away from like, don't use that. They everything they could think of like your daughter is too lean, it won't work. You're not gonna like the angle that the cannula goes in on if you don't like the angle, the cannula goes in on you can't go to a different set. And I just was like, wow, like I look back on that now. And I realized she was just coming from the perspective that she had, which was, you know, this this back then this insulin pump was brand new. She didn't have any experience with it. These were her experiences before, she didn't really know if what she was saying was going to apply to us. She was just like, here's all the things you should be scared about. And you know, I'm like, Okay, thanks. We tried it anyway. And, and then those things didn't end up being an issue. And so long story, but in 20 seconds, like two years after Arden started an insulin pump, our our practice, apologized to us. They came to us and said, We're sorry for how we tried to scare you away from using this pump. Like your daughter is having so much success with it. We're gonna start talking to other kids her age about it. And I thought like that's just always stuck with me. Like they were so adamant. They had rules and lists and reasons. They were like, This is why you can't buy this, this thing and then later, they're like, Yeah, we were wrong about that. Sorry. Jesus. Okay, what else you're wrong about, you know, is how it made me feel?

David Burren 1:43:04 Well, yeah. I, in my own head, I have lots of experience with I've used lots of different equipment, different CGM, different glucose meters, pumps and stuff. I'm not necessarily an expert in all of them. But I've noticed some of the differences. And I sometimes point those out to people because they haven't necessarily noticed those. They don't know those things going in. So try to give people as much information as possible. But yeah, I guess, the track the track there. I shouldn't necessarily be trying, I shouldn't be trying to frighten someone away from using something because I find something in issue. I can point out to them that this thing exists, then it might be an issue for them that personify that. That middle ground of trying to scare someone or trying to inform someone is always tricky.

Scott Benner 1:44:01 It's our communication had that person done what you just explained, it would have been completely different. You know, we just said, look, here's some things that could possibly happen. Here's why this may or may not be important to you. This pump over here won't do that. This one will like I would have been like, Okay, that would have been information to take in. But instead it felt like I don't know, it felt like a scared person or an anti sales pitch. Like you started looking around, like, do they work for somebody like they were so just, you know, pushy. But I don't think looking back that's not wasn't their intention. I just think they had a certain set of pride. I was gonna say priorities, but I think it's perspective. I think they've they had experiences and perspective and they were unknowingly defending that perspective against what they saw as being different. It's just, it's fascinating in my heart, I think people should use what works best for them. Like I you know, I mean, I take ads on the podcast, but, I mean, I have to be honest, like, I don't care if you buy an AMI pot or not, like I want you to have an insulin pump that works for You? And if I'm the pods the one great. I don't mean like, I'm not. I don't know, like, sometimes I think that can get blended a little bit like, well, he has ads for Dexcom. But you get a libre. I mean, what do I get?

David Burren 1:45:11 Well, presumably, presumably, you might not be so comfortable running ads for a company if you had concerns about the product?

Scott Benner 1:45:20 Of course, no, there have been plenty that I've turned down over the years. And there are some that have been easier to take, because I have that personal experience with them like I can, you know, like when Dexcom comes to me and says, Hey, can we buy an ad on your podcast? I immediately think, what are the reasons why? When anyone comes to me and asks for an ad, I, my first thought is, I want to know all the reasons why I shouldn't do this, because if they're too great, or it's bad for the people listening, I won't do that. They may, then that may sound like that may sound like I'm protecting you all which I am to some degree, but I'm also protecting myself. Because if I say, hey, use this pen, and you all run out and buy this pen and it sucks. Well, then you're gonna stop listening to the podcast and be like, Oh, the guy was wrong about the pen. I wonder what else he's wrong about, like, you know, I mean, like, there's a, there's a bit of self preservation in there as well for me, and I have comfort with the things that I advertise for. I mean, like, Chivo Capo pens, a great example, that thing came out. And I was like, well, that's brilliant. Like, like, Yes, finally a form factor. I can put my daughter's hand, her friends can understand it and etc. You ever tried to explain the lily red kit to a nine year old? You know,

David Burren 1:46:38 yeah, we, the only glucagon we have here is the NoVo hypo kit, which is essentially the same thing as the red Lily kit.

Scott Benner 1:46:47 They're gonna keep me because Lily stopping

David Burren 1:46:50 that? Well, that's no most product at glucagon product at the moment. Yeah. So it's no signs that they're stopping. We don't have access to vaccine, me or GMO? Or any of those?

Scott Benner 1:47:01 Yeah, no. And, guys, I'm sorry.

David Burren 1:47:04 I was reminded from what you're saying some of the stuff that comes up on my blog. And what we're saying about advising other people, is always when I started writing things, and putting it down on the blog, I was always conscious that this stuff is going to be up there. Anyone can read it. Yeah, and I don't want to be saying the wrong thing. But there's also this big thing with the, the open source, the do it yourself, equipment of this is not medically approved. If I tell someone, I can't tell someone, you should, you should build this system and it will work for you. I can't do that, legally, I will get myself in a lot of trouble. But luckily what I can do and stay on the right side of the law is say, this is what I'm doing. And it's working for me. These are the things that I've noticed about it example, I always try to keep that in mind. And try to not cross the line of giving something that could be misconstrued as medical advice. Always have it in the context of my experience. I write about a lot of technology. But it's mostly in terms of I have actually used this. This is my opinion of it. These are the things that I've noticed. Right. And I think that's been working very well. It's quite pleasing when I'm at a diabetes conference. As one of the community advocates there, and I get stopped in the hallway by endocrinologist to say thank you for the blog, I was able to direct some of my patients to it. Yeah. Oh, that's great.

Scott Benner 1:48:39 I completely understand what you're talking about. And I'm never not knocked over when somebody comes into the Facebook group. And they answer this quick questions about, you know, what's your attachment to diabetes? Bah, bah, how did you hear about this? When people say, Oh, my doctor sent me hear, I'm always like, Wow, that's great. Like, just terrific. And, and I take all your points to like, you're just I'm just sharing what's worked for, for my daughter, basically, and things that I've noticed along the way. And, but the, the feeling of I mean, I guess the way I handled it is I might do a good job of sometimes sounding like, I'm like, Oh, I just thought of this, which has happened a time or two where something's clicked popped into my head as we're talking. But for the most part, I don't say stuff on here, until I've seen it work over and over and over again for my daughter. That would be irresponsible. I don't understand. I couldn't do that either. So it's a it's a great thing. It really

David Burren 1:49:35 it. It does feel sometimes when I'm moderating some of the Facebook groups. And it does feel sometimes that I'm being very wishy washy with my answer saying, Well, you could do this, but you should see your doctor.

Scott Benner 1:49:53 Yeah, I tried to just say if this was me, or the way I see this, it could be wrong for you. I'm only looking at one graph, there's no way for me to relate. No, you don't. I mean, like that kind of stuff. But you should be going in this direction.

David Burren 1:50:07 I guess I just realized, I guess I had a lot of experience in that before the diabetes advocacy because I've been involved in amateur photography stuff for a long time, the Australian photographic society and various photo competitions and getting critique on photos. And you learn very early on to give constructive critique, not criticism, per se. And you can always find something constructive to say about pictures, when I'm giving feedback on photos, and it's something that I still do to some of the camera clubs. I'm very careful to try and give suggestions and things that they may not have thought about. Without saying this is good. This is bad. Yeah. Because yeah, I'm setting myself up for being attacked. At that point,

Scott Benner 1:51:00 I tend to lean into the, what is the call? Is it the Socrates questioning method? Or, like the idea of teaching by asking questions, you know, like, oftentimes, it's almost it's a version of you can, you know, teach a man to fish kind of a thing. And

David Burren 1:51:18 I have gotten into trouble with that with my family. At times when they say, don't ask me another question. Just answer the question.

Scott Benner 1:51:24 Well, online, I find, it's great to say, hey, well, do you think this or this just happened? And then you kind of let that they almost sometimes people know, they just don't know how to put the pieces together. And you know, I find that pretty, a pretty valuable way to talk to everybody. But, David, I have to jump off in a minute. But this was terrific. I just want to make sure that we covered everything that you don't have anything left hanging that you that you didn't get out.

David Burren 1:51:50 I don't think so at this point. I think I've covered a broad selection. There'll be something new and different. That's happening next month, or whatever. But that's next month, I guess this will this will take a while for this to come out anyway, it'll still hopefully be fairly up to date when it does.

Scott Benner 1:52:06 Yeah, well, because we're talking about things that are more time sensitive with technology, I will slide up on the schedule. So it doesn't, doesn't sound like it came out of left field. But the other things things change quickly, right. Like Arden is off at school right now using arrows pods and, and the version of the loop that she's using now. And she might come home and over, like the holiday break, and we might switch her to be you know, something different and send her back with something different, I have no idea.

David Burren 1:52:37 We'll just reminded me about something that went through my head earlier, when she was saying, I don't want to carry this PDM I want the system running off my phone. But she's still happy to carry around an orange link or rolling link or whatever.

Scott Benner 1:52:53 So that is the gateway what she's not happy about it. It was a trust me, she hates that. But But I got her to be okay with that by telling her that eventually there'll be a system that doesn't require that. And it's smaller. And she has it she keeps it in her diabetes bag. And the orange link seems to have a much better a field of coverage than the Riley LinkedIn. So she's the Riley Link was like you had to bring the bag with you everywhere you went. But now in you know, if she's in her dorm room, where she's in our house, she can walk away from the orange link and still has a good connection to it. So that's become less of an issue over time. And then I assumed we're gonna go to the dash version and, and lose that. That.

David Burren 1:53:42 So we never had the arrows here in Australia. So they finally got approved but never sold here. And then eventually they tried to sell but they decided to do it with the dash, they switched over. So the the reason that came to mind is I've been an iPhone user for well over a decade. But I don't use the iPhone for my diabetes, I use an Android phone. So I'm carrying two phones, right? My Android, Android phone is like,

Scott Benner 1:54:16 teeny, tiny. Yeah.

David Burren 1:54:19 Almost the size of my palm, right. And it just had enough battery to run all day. And it's doing all the stuff. It's sitting in the background. And it displays an outdoor watch. So I can just see my CGM data at any point if I need it. Yeah, but I'm happy during that second device. Whereas some people come to these systems say I'm an iPhone user. I, I wouldn't touch Android. That's, that's the dark side.

Scott Benner 1:54:48 I don't care about that. You're basically using your controller as well just didn't come from a company, honestly. Right by using

David Burren 1:54:57 and in fact, it's spades. way hidden in a pocket most of the times, I am a guy, I sometimes wear cargo pants, I have a lot more pocket options than many girls. I do understand this. Yeah.

Scott Benner 1:55:08 It just doesn't want to. I don't know if you should say like the idea of holding two devices I eat if I offer two phones, she'd be like, No, I don't I mean, I don't know why you would. But I mean, she wouldn't want to do that either. Like she just says she's trying to be very minimalistic with what she's carrying. So she's doing a good job, her bag for diabetes is it's tiny, it's got a phone in it, that orange link, G voc meter, the Contour, Next One meter test strips, and, you know, some gummy bears and a juice box and she gets it all into this little tiny thing. It's pretty crazy. But yeah.

David Burren 1:55:44 And the other thing that came to mind was sort of paraphrasing. One of the other things we were talking about in terms of people look at the stuff that's working for me with my hands free loop system. Let's not loop with a capital hands free looping system. And say, Well, you don't have to do any work. But then I can point it out to them and various friends of mine, who were there in conversations turn around, say Yeah, but he put in a lot of learning to get there. He did a lot of work early on to work out how to control it. And now he can take the benefit of hands free. So part of the the thing that we're hoping to get out of things like this trial and other stuff is more knowledge about how to actually turn it on for people without them having to put in all that homework.

Scott Benner 1:56:34 Yeah, no, that's gonna be the next big step right is not having to understand the background to make it do all these amazing things. So I don't know, like I've seen some people try to make that turn that into a business. I don't know how well that'll work out as time moves forward or not, but it seems it's a weird thing to be involved in, you know, setting up a do it yourself algorithm to give somebody else insulin like it's, I don't know, it sounds like you're gonna have to sign a couple of things and say, you're not holding anybody responsible in the beginning. To get to that what you know,

David Burren 1:57:07 well, I'm dealing with algorithms to give myself insulin. So if I make modifications to the code, which I occasionally do, it's, I'm running them, I've got a bank of test phones and test pumps here that are running on a copy of my CGM feed to make sure they're doing the right thing. And eventually, I'll decide yes, I'm willing to run that myself. Don't have to go through ethics approval once all sorts of stuff to do that. So when it comes time to running the algorithms through the clinical trials, that will give the evidence for it. Hopefully, at some point, a commercial company will say, Well, we will take that we'll make a product out of that using that algorithm, which has been proven. So I hope that'll I don't care if someone makes money out of selling that. Yeah. Hopefully, it'd be nice if I can earn a living along the way, somewhere as as well as the help I need to do but the end goal is improving everyone's lives. Yeah,

Scott Benner 1:58:09 I always think that like, like when I'm how God what's his name came along and said, We're going to bring a version of loop to, to mark it. God white power, the

David Burren 1:58:21 title tide pool?

Scott Benner 1:58:23 I mean, I'm starting to feel like that's so long ago, I can't remember the word tide pool is easy to like, and I understand that. You don't I mean, like I understand the processes. Is, is what it is. But I mean, by the time you get that thing through, there's so many more versions of it, you think, well, you should have started with that one. You know what I mean? And I guess that's also if you make that decision, you'll never get to the end. But it is what's exciting about people doing it in a in a do it yourself atmosphere is that, you know, I mean, something comes out and they go, Okay, we'll adapt it, we'll test it, you know, we'll get a few people together, we'll make a beta test out of it. We feel comfortable giving it out to people here, you know, give it a shot like that stuff doesn't isn't taking three years when it's being done by regular people. So no.

David Burren 1:59:10 So generally, the do it yourself stuff is always gonna be a little bit ahead in terms of features and functions. Sure, hopefully people do it in a safe way. Yeah. Many of us are keeping all the safety in mind when we're designing this stuff. I've seen all the meetings, I've heard an endo stand up and ask the question, now that there are all these commercial systems available. Why would anyone why would you use it yourself system that you have to build yourself? And it's because it's current technology. It's not technology from three years ago. It's got it's got more features. Not everyone will want to do this, but that's why I do it. Yeah. There's

Scott Benner 1:59:53 no reason why we should take any kind of options away from people like I don't care if it gets to Under Yeah, I guess

David Burren 2:00:02 his his thought is, why do I need to deal with this problematic dry stuff now that there's a commercial thing. So

Scott Benner 2:00:09 I can see feeling that way, I can also see like, I'm not gonna lie to you, it's still like going into I'm so bad at this, I don't even know, the program on the Mac that runs the the simulator and then puts it on your phone is called Xcode, right? And so and every time I look at Xcode, I don't know what I'm looking at. I know where I have to click, and I know what I have to do. But if you asked me to explain any of that to somebody, I'd be like, I don't know what any of this is. And so I get not wanting to feel like that, because it's uncomfortable. You know, I, I sent a complete, my daughter got a new, you know, got a laptop when she started school. And then got another one when she started college, and the one that she was done with after high school was shot, it's basically useless. And she's like, Well, what do we do with this, and most of the time, we would trade it in for credit or something like that, and try to, you know, make a little money off of it. I was like, keep it, we'll put X code on it. And you can take it to school with you because Xcode wouldn't even fit on the laptop that she had, along with all the other things she needed for school, I get not wanting to be involved in all that. But being able to text her last night and say, hey, it looks like you needed a secondary Bolus, or, you know, being able to look at a meal remotely and say, hey, the algorithm is struggling, because I don't think it has enough autonomy, you should go back to the meal from two hours ago, and tell it it was 75 carbs, not 65 carbs, like that. And then all of a sudden the algorithms like oh, I didn't know that. And then bang, it works. And like that kind of stuff is. It's pretty great. I can't lie about that. You know that stuff is? It's pretty damn great. So anyway, David, this was really wonderful. I appreciate you doing this with me. I'm sorry. I kept you so long. But thank you very much.

David Burren 2:01:56 It's totally 2am

Scott Benner 2:01:59 Well, that's why you don't know you're half of you at this point. You're just like, Ah, it's all good. But

David Burren 2:02:05 I'm a night owl. I'm a night owl. Thank you for the chat. No, I appreciate it. For people on the podcast. I

Scott Benner 2:02:12 know I'm sure people are gonna love it. I really do appreciate you taking the time. And I know it's hard to get on the show. And it takes forever. So thank you for being patient.

David Burren 2:02:20 And people with can message me on the Facebook group on there?

Scott Benner 2:02:25 Yeah, and and I wanted to say to your bionic wilkie.com. Is that right? It's dot com. That is correct. Yeah. Excellent. So people can see some of the stuff you were talking about there. It's great website. Well, I want to thank David for coming on the show and sharing all that great diabetes knowledge with us some really astonishing stuff in this one. Thanks also to touched by type one. Don't forget to go to touched by type one.org and find them on Facebook and Instagram. Give them a follow. Check out what they're doing. Long, longtime supporter of me and the podcast. Hope you can support them. If you're enjoying the show, tell someone else about it. share this episode with them. Go find the private Facebook group Juicebox Podcast type one diabetes. And of course subscribe and an app. Amazon music, Apple podcasts Spotify wherever you get your audio you don't I mean, Subscribe and follow. Thank you so much for listening. I'll be back again very soon with another episode of The Juicebox Podcast.

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