#898 Breaker Breaker
Jacqueline's daughter has type 1 diabetes. We talk about school and expectations.
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Scott Benner 0:00
Hello friends, and welcome to episode 898 of the Juicebox Podcast
I make little notes for myself after I edit the podcasts. And usually my notes are meant to help me record the open to the podcast but I gotta tell you, I didn't understand my own notes. So this is Jacqueline and she's got a kid with type one diabetes. Think they had a problem at school, we end up talking about people's responsibilities at their job a lot. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin. Also try to ignore the fact while you're listening to me rant about people not doing their jobs that I did not do my job by leaving myself an audio note that was clear enough for me to make the beginning of this episode just let that irony go past you. Actually if you need to be distracted, go to T one D exchange.org. Forward slash juice box to cleanse your palate. Get there and take the survey finishing the survey helps type one diabetes research it supports the show. It helps people with type one T one D exchange.org forward slash juicebox your mental sorbet before beginning the podcast
this episode of The Juicebox Podcast is sponsored by Omni pod. Of course Omni pod makes the Omni pod five which is an automated tubeless insulin pump. And they make the Omni pod dash, which is not automated but still a tubeless insulin pump. You'll figure it all out at Omni pod.com forward slash juice box My daughter has been wearing an omni pod every day. for over 14 years. It's been a friend in this journey. I think you'll enjoy it. Omni pod.com forward slash juice box will you support the sponsors by clicking on my links or typing them in a browser you were helping to keep this podcast plentiful and free. You're also helping to support the private Facebook group Juicebox Podcast type one diabetes. I mean, technically you're paying my bills and then I do all this stuff and then you get it for free. You understand how commerce works I imagined juicebox podcast.com. All the links to all the sponsors. If you need g Vogue hypo pen, you need a contour next gen blood glucose meter a Dexcom and Omni pod. What else you want to check out touched by type one, you want to get yourself some ag one from athletic greens, or you want some quality bedding from cozy Earth. These are things you'll find at juicebox podcast.com. There are also links in the show notes of the audio app you're listening in right now what I forget what I forget what you're like just start the podcast scout. What are you doing? I'm doing business Omni pod Dexcom contour G Vogue, ag one, the T one D exchange us med that's what I forgot us meds where my daughter gets her diabetes supplies from touched by type one cozy Earth. I think we've got I can't say that one yet. But I think we got a new and common T one the exchange. So I say that I said it. That's it. Oh, better help better. help.com forward slash juicebox save 10% of your first month of therapy therapy. I think we all need therapy betterhelp.com forward slash juicebox. Alright guys, that's it. I appreciate you listening to this stuff. I mean, being completely honest and serious. The podcast doesn't exist without the sponsors. And the sponsors don't come back without you. It's a circle of life kind of thing. If you need one of these things, please click on my links. I'm not saying go buy something you don't want. I'm not saying to go buy something you don't need. I'm not saying to go buy something you can afford. I'm saying if you're getting therapy, if you need to hype open if you want to Dexcom etc and so on. Click the legs.
Jacqueline 3:59
Hi, my name is Jacqueline and I have a daughter living with type one diabetes.
Scott Benner 4:07
Jacqueline. Why do I hear people talking behind your back on what's going on?
Jacqueline 4:11
My daughter actually is an online learning right now she's doing digital school. Oh, I could close the door. I don't know if that would make the echo worse. Let's
Scott Benner 4:19
find out. We definitely can't have a disembodied voice behind us
Jacqueline 4:28
she must have just made it louder because it wasn't couldn't hear before and now I can
Scott Benner 4:33
No it's okay. You You were like hey, I'm Jacqueline. I have a daughter living with type one diabetes. And then I felt like I was picking up half of a CB channel behind me so Okay, so my house sounds like CB radio.
Jacqueline 4:47
Yeah.
Scott Benner 4:49
Do you think people even know what that is?
Jacqueline 4:51
I had a nightmare about a CB radio two nights ago actually go on well being one. Oh god. It's so disturbing. It's so I was so upset. I, I had a dream that I was with. I have a friend who has a daughter, that's my daughter's age that hang out and I dropped me and my friend were like, on this road trip, we're going somewhere. And we were letting a little girls like, go for walks out on their own. And we were like watching them from a distance. And then like, we check in on them, and then we're just letting them walk around in the woods like idiots. And then like, it gets dark, and I realized I don't know where they are. And I have this giant TV radio. And I'm like, calling out on the radio, like, has anybody seen these little girls and, and then this crazy, like, the creepiest, deepest voice you've ever heard comes back on the radio, and indicate that like, he has them. I'm thinking but it was like cracked up like you couldn't tell what he was saying. And then I was like, begging him to get them back to us. And he's like, they're fine. They've already had their milk and cookies. And then I woke up and I was like, so sick, like and upset. And I. That's because, because it's ice cream from the night before it was called Milk and cookies. I think Wait,
Scott Benner 6:09
you had ice cream in the evening before called Milk and cookies? Yeah. I listened. Oh, my God. So had I not like arbitrarily said CB radio, which is a very bizarre thing to say. Then we would not have heard about your dream.
Jacqueline 6:26
Maybe not. No, I don't really it really like messed me up. It was really a
Scott Benner 6:31
wake up sort of like, shock.
Jacqueline 6:34
Yeah, well, it was kind of one of those things were this was like I woke up at like, it wasn't even midnight yet. Like I had just, I hadn't even been asleep that long. And you're kind of in that headspace where you don't even really realize what's real and what's not. And if you're sleeping. So you know, you wake up and you're like, Oh, my God is my kid. Like, abducted and like my child was abducted like this in the in the pit of my stomach. And it was not good. Then I woke up and I'm like, oh, it's it's just type one diabetes.
Scott Benner 7:07
Is that what woke you up?
Jacqueline 7:10
A bit dream woke me up. Yeah, I think because I was just physically so Ill over it. That's crazy. Well, yeah,
Scott Benner 7:17
we were just, we were just talking about dreams. Last night, my son comes up to me and he goes, in your dreams. Do people can you hear people when they're talking? And I was like, why? And he goes, and so at first I thought, well, yeah, I can hear people's conversations in my dreams, right? I don't really recall them. But I hear them. I know that I'm aware of them when I'm dreaming. And then he goes, No, no, he goes, do you actually hear them? Or do you just know that? What they're saying to each other? And I was like, Oh, wow, this is like a matrix question. Like, like, are you hearing sounds in your head? No. You say yes. But I don't think so.
Jacqueline 7:58
Because that voice was so distinctive. Like, I heard that voice that that creepy voice over the CB radio, like I can tell you exactly what it sounds like. Right.
Scott Benner 8:08
But I think what my son is saying is does your brain just create that? That impulse that makes you feel like you heard it, because if you if you and I stopped right now, if we all stop right now, you know, here, we'll do it all together. Everybody's listening. If we get very quiet, and try to picture someone who we knows voice, you can hear it in your head. But that doesn't mean you're hearing sound.
Jacqueline 8:33
Not physical sound. Right?
Scott Benner 8:34
Right. So he's talking to me like this. And I'm like, I'm feeling like, I'm having a conversation. And we're all high. Because he's like, he's like, he's like, can you really hear it? And I'm like, No, and he goes, and plus dreams move very quickly. He goes, maybe you just infer that you know what's happening. Like, you're seeing the images, quote, unquote, but not, but he's like, how would you hear it? It's moving so fast. And and so I was just like, Oh my God, you're flipping me.
Jacqueline 9:01
How old is your son sounds like my son. He's 22.
Scott Benner 9:06
Somebody said it downstairs and it caught his attention. I was upstairs working and I think he had a half an hour conversation with my wife about it before he walked up and asked me so anyway, the at some point during this podcast if it gets weird required for just one second, I'm gonna lean into the microphone and go, Jacqueline, I have the girls.
Unknown Speaker 9:29
It's pretty close.
Scott Benner 9:32
Don't worry, they've had their milk and cookies.
Jacqueline 9:35
Oh my God, that's really creepy.
Scott Benner 9:38
Oh my gosh, anyway, okay. So how many kids do you have in total?
Jacqueline 9:44
Um, I have two biological children. And then I have two bonus stepsons that are older now. So my stepsons are 18 and 20. And then I'm My daughter is 10 and my son is 12.
Scott Benner 10:05
Okay. Alright, so a couple of interesting questions here. Do your stepsons have any autoimmune issues?
Jacqueline 10:12
No. Okay. They're not related. So we're just kind of like the Brady Bunch.
Scott Benner 10:17
Are they not related to the man you're married to?
Jacqueline 10:21
Yeah, they are. But my two children are from a previous marriage.
Scott Benner 10:25
Oh, hold on a second. All right. So there's like when you woke up from your dream last night, there was a guy laying next to you. Those boys are his. Your, your kids are not his so that your kids are his stepchildren?
Jacqueline 10:39
Yes, yes. Okay. Yes. I got it. I got I got like the Brady Bunch.
Scott Benner 10:45
With fewer people. And creepy. Yeah. Okay, so you have a 10 to 12 year old your 10 year old has type one. Yes. As a girl, I'm sorry. Yes, sorry. How about a 12 year old girl or boy?
Jacqueline 10:57
He's a boy and healthy as can be. And nobody in my family or their dad's family has any history of any autoimmune,
Scott Benner 11:06
nothing? No, nothing at all. Nothing
Jacqueline 11:09
or nothing. She did get this was a COVID thing.
Scott Benner 11:14
Yeah, so this is super interesting, because I watch these conversations evolve online constantly. And I can never tell because it's online writing, if it's just people's, like, you know, they're not being specific when they're communicating and writing or if they really feel this way. Because you'll hear people say, you know, I was diagnosed with type one diabetes after I had COVID. And you'll have and you'll hear people say COVID gave me type one diabetes. And I don't know what they mean when they say that. So how do you feel about it when you when you think about it? So
Jacqueline 11:51
what happened with my Actually, both of my kids got COVID After being at school for two weeks, last August. So they both had a fever. And then Bell had like a super light cough for a couple of weeks. Lincoln, nothing. I mean, they really had like, hardly any symptoms at all. And just for to preface this, my kids have never had an ear infection. They used to get perfect attendance. Like my kids are like, I'm a nutrition freak, like we they are no history of any issues whatsoever. And I thought my kids could handle it. Because every news source told me this isn't the kids can handle this, right? Yeah. And and so it was exactly two weeks. It was the day she was supposed to go back to school after she was, you know, quarantined at home. The night before she started vomiting. And I thought it was something she ate. I didn't link it to anything else. I'm like, Oh, she must have had, you know, because she was at her dad's house. So they eat a little different, which is fine. But, like just
Scott Benner 13:01
fine, in case you're wondering.
Jacqueline 13:06
away, I wouldn't do it, but I appreciate everything they do.
Scott Benner 13:09
That's why he lives by himself now. No, no, actually,
Jacqueline 13:13
he's actually remarried as well. And she's fantastic. She's been really fantastic. Anyway, so she had dinner over there. Actually, she started to get sick over there the night before she was supposed to go back to school. And when she started to get sick, I was like, I'll just come get her because I'm her mom. And she used to be with me when she's not feeling good. I'm not biased at all, by the way. So I bring her home and she just is vomiting like all through the night. And on our like four or five. I'm googling like, when do you take your kid to the ER how much? Because I'm in my overreacting is it's probably just a food poisoning or a bug or something. And then I noticed she was breathing kind of heavy. And her and then I'm like, Okay, if your breathing is off, like to me that's emergency room. Like if you can't breathe or you're like she just had very labored breathing. And so took her in. She like had trouble walking from the car to the ER. And I'm like, I'm like, Come on, let's like what's wrong with you? And I like had no idea what was going on. I thought she was just being dramatic because she has a history of of dramatics. And we got in there and oh my God, thank God for this children's hospital. They were just amazing. They pricked her finger immediately. They said they smelled it on her. And immediately they said, Oh, looks like onset. And I'm like, I have no idea what that means, like onset onset. What like what the hell are you talking about? And so, you know, the whole thing happens and this was obviously during COVID. So there was no breaks from it. I couldn't leave the room to cry or to freak out. I was in front of her like the whole time, which was interesting. But anyway, like in talking to the nurses and doctors, the nurses had said, Yeah, we're seeing a ton of these lately. And so while I was stuck in that ICU, we were in the ICU for three days, the last day was education. But I read the entire Internet. I'm a reader, and that's an I. And I found you I had I was posting on Facebook, and I had a Facebook friend that recommended the podcasts. So I was super lucky to find the Juicebox Podcast in the Facebook group. Oh my gosh, that's everything to me. But I read the whole internet. I went to the American diabetes Association, I watched the president of the diabetes Association, talk, give updates. And in one of the speeches that he was talking in, he was talking about how DKA doubled in 2020. Right. So I also have a acquaintance of mine that got pancreatitis from COVID. And I read a ton about the link and so COVID actually directly attacks the pancreas. That's scientific knowledge that that's what it does. The question is and people and I don't really know for sure, exactly. You know how this happened. If if
Scott Benner 16:31
Oh, Jacqueline, you just disappeared again. Or attack Jacqueline. Hold on. For me. That time? Yeah, that time. It definitely wasn't my fault. So what is going
Jacqueline 16:41
on? I
Unknown Speaker 16:41
know it
Jacqueline 16:42
keeps on this computer for living. I never have.
Scott Benner 16:46
Hold on one second. I'm going to try something. But we're gonna try something together. Hold on
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Alright, are you still there? I'm here. Okay. So I made an adjustment here and we're going to see if that helps. So I apologize because it's okay by surprise. And so you what you said was, I'll recap. Okay, you watched the video from the ADA. Right? He said that DK was up significantly. You had a friend you had a friend. Okay. You had a friend who had pancreas haitus after after COVID And you're saying you're saying that COVID goes, but towards the pancreas, which is not something I know about. So um, yeah, so there's a,
Jacqueline 20:11
there's a study on Harvard Medical. And there's some other studies out there that talk about how COVID attacks the pancreas. It doesn't talk about how COVID attacks beta cells, but COVID attacks the pancreas 1,000%. So, my question is, and the question that hangs out there in the universe, if COVID is attacking the pancreas, if your body is under attack, will your body make antibodies? To go towards that place? Because not only do the COVID cells attack the pancreas, but they replicate the pancreatic cells and infiltrate as well. So if that is the part of your body that's causing the problem, can your body create those type one antibodies to fight it? I don't know. Nobody knows. There's not enough research. Yeah, um,
Scott Benner 20:58
so I'm just I Googled while you were talking and came up a couple of things right. So this is from Medscape. It says SARS. cov. Two infection has also been shown to affect the exocrine pancreas manifesting as pancreatitis in 5%. of critically ill patients with COVID-19, as well as enlargement of the pancreas, and abnormal levels of lipids and amylase in seven and a half to 17% of patients now that that's data from pretty recently made 2022. Another one says, What are the most common organs affected by COVID-19 lungs are the main organ affected, however, the virus can also affect others. But then it says, such as kidneys, brain, and liver doesn't mention the pancreas. So it might, for me, knowing nothing, and everyone keeping in mind that I slept through a lot of my high school education and did not go to college. My expectation is this is that for your daughter had antibodies that made it more likely for her to get type one diabetes, and that a virus kicks that process in so my daughter had Coxsackie virus and then got type one diabetes. Right? And
Jacqueline 22:14
got Yeah, and I think, and I'm not saying I know for sure that COVID caused this. But when you look at the statistics for what's happening, either there was just a crap ton of people that were predisposed, that it's triggered like crazy. Or maybe it could be creating antibodies and some people that weren't predisposed.
Scott Benner 22:37
So that's a question. Yeah, it's a it's a valuable question to ask, obviously, my expectation is, is that the first thing you said is what happened? So think of it this way, my daughter was two and she was diagnosed, if I just don't go somewhere with her one day where she gets Coxsackie. Maybe she's not diagnosed till she's six. Right. And it's like, because at some point, you have to get you have to get a virus that has the right mixture, who cares what it is, that will kick you into your type one. But but my daughter always had those antibodies, like coxsackievirus didn't magically make antibodies for type one diabetes appear in her. So it so my point is, is that I think that the population usually doesn't all get sick at once, with a virus. And I think it kind of needs to be a virus, like, from what I've, you know, called together talking to people all this time. So I think we just laid a blanket of virus across the, across the world. And what grows from that, as people with type one diabetes should show their head. They're like, Oh, look, I'm I have type. Yeah, that's how I think of it. I could be 1,000,000% wrong, but that's how it occurs to me. Oh, yeah.
Jacqueline 23:54
And I think there's a good chance that that you're right, too. And I just, I just don't know, and I hate not knowing where you're in any place,
Scott Benner 24:03
aren't you? Because in the beginning of diagnosis, a lot of people torture themselves with this question.
Jacqueline 24:12
Oh, my gosh, I tortured myself like crazy and the guilt for even sending my kids back to school because they stayed home the year before, you know? And then, you know, me and my husband got vaccinated, and we thought the kids would be more resilient. And so yeah, I really, unlike I just should have just waited for the vaccine to come out. And maybe she would, you know, have another 10 years without it or another, however long, you know, and then on the other side of the coin, I'm like, God, I wasted her last year of being healthy sitting in the house.
Scott Benner 24:49
Okay, had any psychological issues stemming? Yeah. Oh, good. I think it's fun for us here on the podcast bad for you. Yeah, so I was talking to somebody the other day, and they were just they had this problem. And I was like, Oh, this poor person. And then the rest of me was like, This is great for this.
Jacqueline 25:09
Logically, logically, I know and people tell me and I know like, it's, it's not my fault. It's, it just feels like parenting through COVID. And now through type one diabetes, I feel like every decision I make I regret or is wrong, or I can't, there is no right decision. And even if you would have made a different decision, that I could have ended terrible, I could have entered the wrong way. You know,
Scott Benner 25:33
I'll tell you what to imagine this. Imagine you get her a vaccine. And she goes back to school and she gets COVID. And she ends up with type one diabetes, you would have been like that vaccine.
Jacqueline 25:47
Oh, and there's a lot of people out there that that that claim that the vaccine gave their kid COVID or XYZ to and you know, yeah. And I'm like, Oh, those people are crazy, but
Scott Benner 26:00
not me. Not me.
Jacqueline 26:04
Well, whatever. Yeah, you really can't, when they really can't, yeah,
Scott Benner 26:07
what it brings up is the uncertainty of being alive. And what happens when you get put in charge of another human beings life and you love them? Right? You know, so now you feel like I have to make, I mean, listen, I'm no expert, but but my kids 22. And I thought we did pretty well. And then there are times when something pops up, and you're like, he's like, this is completely botched. From my childhood. You're like, really, like, you don't I mean, like I say that. My son, my son is older. He's like, he's like, this thing happened. And you guys should have done this. He's got hindsight. And I let him have his feelings. And I yeah, they're perfectly reasonable. But but, you know, he wasn't 26 and trying to figure out what to do with a one year old or something, you know what I mean? Like, like, he lacks context. And and you don't care about context, you care about making the exact right decision, and there's no way to do that.
Jacqueline 27:10
I know that logically, my brain knows that, you know, but it's still hard to get some of those thoughts out of your head.
Scott Benner 27:19
You also don't have all the information ever, like so. Like so my wife for example, through her work has knowledge of the j&j COVID vaccine. Okay, so at the, at the very time that people were like the j&j vaccine is killed a bunch of you don't even that was all
Jacqueline 27:36
going on. Right. That's the vaccine that I got.
Scott Benner 27:39
I was I was supposed to get the j&j vaccine three days after that popped up in the news. And I was like, God, I hope they don't stop me from getting my vaccine. And then, and then they did. And then I was like, oh, then I had to wait. And then you know, as soon as they said, it was okay. Again, I went and got the j&j vaccine, because I was making decisions based off of what I knew. And, and I also had different contexts where I forget the details of this. So please, don't take this next couple of sentences for details. But there were a handful of women who died after having the vaccine. But they weren't. They were in a very specific medical situation, right or life situation. I don't remember. I'm being very honest, I don't remember. But the point is, is that I was not in that medical situation. So I so I liked the idea that j&j vaccine because it was kind of based on older technology, and I liked it. So I'm like, we're going to do this plus, my wife had spent a year sifting through safety data for like, that's, you know, while you were all hiding in your house, my wife was trying to make sure that that vaccine was okay.
Jacqueline 28:45
If you want to know something interesting about that vaccine that I was reading about is people that took it were more likely to faint afterwards. And I I hate needles so much. It's funny, you will never meet anybody that hates hate them. I am very needle phobic I've always been. And so I chose the Johnson and Johnson vaccine because there's one of them. And I also can pass out if I get freaked out or you know, yeah, or sad, or get blood drawn or something. So it's funny that that's the vaccine that people are more likely to pass out in because that's the one all the wimps take
Scott Benner 29:30
it even that's an interesting statement, like you're more likely to pass out if you do this than this. What an and we hear those things as headlines. And then oh my god, then in our minds, like, you know, there's a room a gymnasium full of people getting the j&j vaccine. They're falling over like those sleeping. Yeah, except what it probably means is that, you know, I don't know 100 people out of every million passed out with this one, but with this one, it was 120 to me Yeah.
Jacqueline 30:01
I just think this psychological aspect of it is interesting, like, the types of people that chose that one might be more predisposed to painting or freaking out, you know, the types of people that would willingly sign up to get double the needles.
Scott Benner 30:17
That's so interesting. Yeah, you're getting the shot never occurred to me as being an issue one way or the other. Yeah, I never thought of it that way. But I don't have a trouble with the needle. So it's anyway. Well, anyway, however, no, don't be sorry. Your daughter's got diabetes now. So. And how long ago was this?
Jacqueline 30:36
August 23. So for diversities coming up?
Scott Benner 30:41
Oh, one year she's coming up on. Okay. All right. So diagnosed during COVID. Did you how long did she stay in the hospital for?
Jacqueline 30:51
We were in the hospital for three days. She was when they admitted her her blood sugar was 575. And then her a one C was 8.4.
Scott Benner 31:04
Okay, so your question the day that she was diagnosed? Yeah. Was How long after she had gotten COVID?
Jacqueline 31:14
Two weeks. 14 days,
Scott Benner 31:18
14 days. And her blood sugar was five or 75?
Jacqueline 31:26
Well, 14 days from her fever. Now she could have been exposed a week before that. 14 days from her fever.
Scott Benner 31:34
Okay. I hear you. Alright, I got it. I got it. I'm trying to remember how long I thought Arden had Coxsackie furl a month or so before, even longer than she was diagnosed. Yeah. Okay. Anyway. You stay in the hospital, they let you out. What did they give you when you leave?
Jacqueline 31:59
Oh, they were so great. We had I had bags and bags. I had. Well, she got her little JD are up there. We they gave us like tons of books and material. I actually met with the dietician at the hospital, which was nice. And they did lots of training for me at the hospital. I left with insulin pens glucose meter. So we had Lantis and Humalog. And then keto ketone strips. I mean, pretty much everything we we would need.
Scott Benner 32:38
Okay. I liked how you it was like you were leaving a birthday party and people are like, here take a kazoo.
Jacqueline 32:43
Yeah, and she had this huge like blanket that gave her all these toys that they were constantly like, showering us with it was just great Children's Hospital and, and there was a social worker that came in to make sure we were okay. Like, do you need anything? She got me like a brush. And yeah, they were just amazing.
Scott Benner 33:01
So you you had done a lot of reading while you were in the hospital. So what was your expectation of what living with diabetes was going to be like versus what it ended up being?
Jacqueline 33:13
Oh, at first, it was so overwhelming. It was just, you know, like I said, we're both I hate needles. She hates needles. I mean, even now getting bloodwork it's it's horrible. I, I would I never wanted to. So, at first I'm like, How the hell am I going to do this? Like, how am I going to do this? All the time, multiple times a day. It's just such a shock. Like, it's such a, it just turns everything on its head and it seemed so daunting and so intimidating. And like I obviously like went through so much grief of just how our lifestyle was about to change, you know. Now a year later, it's not that big of a deal. As much. i It's a small, a smaller part of life.
Scott Benner 34:13
Yeah. Does she have did she have a honeymoon?
Jacqueline 34:17
I don't not a well defined one. I don't really understand the honeymoon thing. Because it's, um, I don't know. And she's had she's 10 So she's got like hormones, hormonal stuff is starting. So it's hard to tell like we need to make adjustments sometimes but she never got to a point where like she didn't need insulin or anything like that.
Scott Benner 34:43
Yeah, I was gonna say if you don't understand the the honeymoon then you didn't say it. Yeah, probably not. Right. But that's even interesting that she had a short or non existent honeymoon. So her her needs haven't changed. significantly, in any leaps?
Jacqueline 35:03
Not really interesting. Not really like how you
Scott Benner 35:07
said she has hormone stuff going on.
Jacqueline 35:11
You know, you know that thing when you think you have it all figured out, and then you're like, Oh, I got a couple of days here, we're, we're doing good. And then all of a sudden it changes, you know, she needs she needs half the insulin or twice the insulin. You're like the hell's going on
Scott Benner 35:27
right now? I know. Okay, so how did she handle it? Like, I guess just kind of psychologically and like as a person?
Jacqueline 35:37
I'm at first really, really well, at first it was. She, she started giving herself shots, actually, fairly quickly, she preferred that. She got a lot of attention in the beginning. And she really liked that. And she didn't mind the candy either. So at first it was it was good. It took a little while for things to kind of soak in. Now. She's still pretty. I don't know.
Scott Benner 36:17
I like how you said she doesn't like she wanted to do the shots yourself. And I'm thinking of course she does. Because you're probably holding the needle. Like, I don't want to do this. This is terrible.
Jacqueline 36:27
I mean, I got used to it pretty quickly. I got I really like was able to, obviously a necessity. I compartmentalize and detach myself from feeling anything at all, and just go into like robot mode. So no. But now it's it's complicated. There's a lot of layers there. There's a lot of things we were working on. I started taking her to a horse therapist, which is not a a horse talking to her. But as a therapist that uses horses. My husband says every time I say horse therapist, do you think of like her talking to her?
Scott Benner 37:09
It's funny, I thought opposite. I thought all these poor people can afford a therapist for a person. That's terrible. I knew
Jacqueline 37:20
what's funny is the reason she's going to equine therapy is because I couldn't find a normal one. I you know, I was looking everywhere. And she was asking for help. And she you know, obviously has a lot that she's dealing with and isn't great or comfortable with expressing herself. Like she keeps a lot on the inside. That's and she's always been that way. So I searched forever. I contacted the hospital, I contacted everybody and nobody had any resources that would take our insurance that would talk to somebody her age. And then finally, I was just at this leadership thing. And one of the people that I was going with, he's like, Well, I do equine therapy, and I have an opening and she takes insurance. I'm like, Oh my gosh. So it worked out.
Scott Benner 38:13
How does this? How does this work? Does she just sort of care for the horse and, and ride it. That kind of thing. She hasn't
Jacqueline 38:21
actually ridden the horse. But she will like room it so she brushes it and does like breathing. And then the horse is very in tune to feelings. And so, you know, if you put your hand on a horse and you think happy thoughts, and you put your hand on a horse and you think angry thoughts, the horse reacts differently to your mood. And so it's kind of getting in touch with your own feelings through getting in touch with the horses feelings, and the horse expresses how it feels with different body language and, you know, and the thing that the horse does, and so she's teaching my daughter, you know, see how he does this with his head or how he that means he's feeling this way? Or are we we don't want to make him feel nervous. So it's a lot with, it helps with like anxiety. Yeah, but also just kind of identifying what are your feelings and how to kind of be a little bit more in control of them and identifying them.
Scott Benner 39:19
That seems like either very worthwhile, or somebody's tricking you into paying them to brush their horse.
Jacqueline 39:25
Well, I mean, it's insurance. So
Scott Benner 39:29
I imagine the person right now they're like, This is amazing. These people give me $40 And then they brought my horse for me. And I know right, I tell them I know what it means when the horse looks down to the right.
Jacqueline 39:41
I need to start advertising like vacuum therapy services.
Scott Benner 39:44
Oh my god. I've been thinking the same thing while you're talking. People would feel better pressure washing my siding.
Jacqueline 39:53
I know that that crossed my mind to
Scott Benner 39:56
helping her kind of doesn't matter. Ya know,
Jacqueline 39:59
she really likes it. it it just sucks because it's it's hot. We're in Arizona. So over the summer. She's we can't do we can't do the worst stuff over the summer because it's triple digit temperatures. So yeah, you have to wait until late September to get back into it probably. October,
Scott Benner 40:16
you live somewhere where people aren't supposed to be. Because the temperatures,
Jacqueline 40:21
it's gorgeous. But we do need to be we do need either water or air conditioning, we need to be in the pool, or in the house.
Scott Benner 40:28
It's interesting, isn't it? Yeah. I was just talking to somebody the other day from Canada. And they were talking about how cold it gets. And I was like, move. Like why are you there? And now you're telling me triple digits on like, I don't care how nice it isn't the other times a year to get the hell out of there.
Jacqueline 40:45
Well, I don't know if you can see my Facebook profile. But you can I actually went for a walk at sunrise this morning around the lake, the park by my house and I take I like wake up at 5am and take pictures of the sunrise and it's just it's everything. It's yeah.
Scott Benner 41:03
How hard is it? It's five o'clock?
Jacqueline 41:05
Um, it was what 82 Okay, this morning at 5am. So it's not too bad right now, because it's monsoon season. So we're getting like rains. and stuff.
Scott Benner 41:17
I like when people from different places say things that they think sound normal, like it's triple digits hot and it's monsoon season. You're like, you know, because it's monsoon season. I'm like, oh, yeah, sure.
Jacqueline 41:29
That's just basically when were pelted with like these months, students are crazy. We had two trees ripped out of our front yard that were like 10 years old.
Scott Benner 41:37
You're explaining a scenario where I would run. Like, I gotta go somewhere else where there's no monsoon season, if at all possible.
Jacqueline 41:48
Well, I visited my friends in California a couple of weekends ago. And she gave me a hard time because I had to wear a jacket to the beach. Because I was like chilly. And I like I just I couldn't live anywhere else. Because I you know if it's anywhere around 70 or below, forget it like I'm freezing.
Scott Benner 42:09
I've only been to Arizona once I was in and out very quickly. But it was nice. But I was there to a reasonable time of year. Although, now that I'm thinking of it. When I landed. We had to take alternate routes to where I was going because some of the streets were flooded. Yeah, yeah. So you don't it doesn't handle rainwater well, either, right.
Jacqueline 42:30
Not too great. So historically, there is a history of flooding we had we haven't seen we haven't had anything too horrible in recent history, but Gotcha. Well, the town I live in has like walls built to just in case.
Scott Benner 42:48
You're painting a photo for people. No one's going to move to Arizona after you describe it.
Jacqueline 42:53
So hopefully we're like the fastest growing one of the fastest growing places in the country. So that's fine if people stopped moving here.
Scott Benner 43:00
Only because of the equine therapy industry. Taking Yeah, wow, fire trucks. That doesn't happen very often here. Can you hear that? No, no, my microphone is so good. It, it takes my voice and blocks everything else out. Okay, so she's struggling a little bit. Is that fair?
Jacqueline 43:24
Yes, yes.
Scott Benner 43:25
How does that how does that present itself? Like, what side of that? Do you see? Like I know, you said she holds things inside. She needs help. She's having trouble expressing herself. But what does it look like to you from the outside?
Jacqueline 43:39
I'm getting just reactions that don't match the situation. Sometimes we're being upset and not knowing why. I'm crying and not knowing why sometimes. So and not wanting to do things that she previously wanted to do, she gives up very easily. We tried doing school last year in person with diabetes, that was a nightmare. It was a it was a really hostile situation with the administration at that school. So I didn't want to deal with them again. But I left it up to my daughter, you know, I would do it for her if that's what she needed, you know, but she hated that. I mean, they pulled her out of school seven, eight times, 678 times a day sometimes to check her blood sugar and just refuse to use Dexcom to follow her at all. Like I was so excited when we got the technology and like oh, she could be in class least restrictive environment. And they're just like, which is funny because the school really touts like technology. But they're, oh no, you know, it's gonna make us liable Whatever. So instead of just looking at a screen to see her numbers, they wanted to bring her into the nurse's office, you know, before and after every meal before and after PE and recess, you know, beginning of the day end of the day and you know, and I before and after everything
Scott Benner 45:17
they were finger sticking her like nine times a day when she was wearing a CGM.
Jacqueline 45:21
No, baby, they wanted her to physically leave the classroom and go report to the nurse what her CGM said,
Scott Benner 45:27
why does that matter? I don't understand. Yeah. Instead of the nurse having access to it,
Jacqueline 45:36
yeah. And we donated $400 to the school, so they could get a tablet. And they happily took my money knowing exactly what it was for and then refused to buy one.
Scott Benner 45:46
Oh, are they playing? When
Jacqueline 45:48
I went into questions, I wanted to ask questions. And I talked to the principal for the first time and I had never talked to this person never really met the principal, except for maybe like in the beginning when we had the meeting, but I had never like had a one on one conversation with her. And I went in there to like ask for her help. Right? I I know how to deal with people. I was in customer service for ever. Like I, I'm not like some crazy person, right? And she's like, Oh, we could talk about this in my office. And I was like, Oh, great. I could to try to talk to her. I slipped I talked to her. We sit down. And she was Well, first of all, you need to calm down. And though the first thing she said to me, and I'm like, Oh, she and she. And she was like talking down to me like an angry teacher, like a bad teacher would talk to us. And she's like, every time you come in here, you have an attitude. She said that to me. And I have no I, I had
Scott Benner 46:51
never spoken to her before. I have never spoken
Jacqueline 46:53
to her before. I felt like I was being nice to everybody. I felt I was doing the best I could I I never said a negative thing to worry about anybody. And I brought in baked goods when they asked me to when I brought, you know, gifts at Christmas time. And I'm like, I thought it I know I'm not like, maybe I'm just not a likable person, like, but like she was telling me to this woman was telling me like, she doesn't like me, you know, and I'm and I'm sitting there asking for help for my kid. And she's like, we're doing everything we need to do. And we're not legally obligated to do this, this or that. And, you know, we're doing what we can do to keep your daughter safe. And she was so hostile, I started shaking, and I started crying. And I left and
Scott Benner 47:42
I would have taken I would have taken $400 worth of office supplies out of her office when I left.
Jacqueline 47:48
She followed me into the front office from her office and kept going at me. And I don't remember what she said, because my ears were ringing. And I turned around and I yelled at her. And I said, stop talking you don't know how to talk to people. I yelled at her. And I got in my car. And I was like, a mess. I couldn't drive because I was shaking and crying so hard. I was just there to ask for help. Right. And I was so viciously attacked. And, um, I tried to I went online to try to find somebody that this woman was accountable to is a public charter school. So they're not part of a district. And I couldn't find anybody. I couldn't find anybody to reach out to for help. And I almost pulled my kids out of school that day. So, but I'm like, okay, you know, get your head straight, calm down, cool off. And I did I calm down and cooled off. I sent her an email a couple of you know, the next day, saying like, you know, these are the things you said that made me feel this way. And I would recommend maybe not using this verbiage with other parents in the future. I put it all in writing. And she, you know, she came back and she emailed me back and apologized if that's how I felt. And she said, I just I have a history of going in there and questioning what they're doing. And criticizing them she said, which I didn't feel like was the case at all. So but I'm sorry for asking questions. This is all I'm just trying to help my kid to you know, so
Scott Benner 49:33
not knowing you for more than 45 minutes. I I'm thinking that she didn't like being challenged and they didn't want to expand what they do because then it opens them up to liability and it opens them up to having to provide those services for other people in the future. So
Jacqueline 49:50
yeah, and the funny thing is, is when when Bellwood and she, you know your first year, you're gonna be all over the place and maybe you're all over the place all the time, I don't know. But there were times where she was really high. And there were times where she dropped fast. And those the times that she dropped fast, were not the times the nurse had her check in. So, right, having that extra security to me, is less liability. To me, if you told me no, I'm not going to monitor your daughter, and then my daughter has a seizure, because you're not monitoring her. Right? That's when I'm going to get a lawyer. That's what I'm going to sue you for not doing what I told you needs to be done to monitor her. Yeah. So how is it more liability? Well, to to have that information,
Scott Benner 50:37
the way it's more liability, if you look at it just from their side, is that saying that you'll do it in first that you'll stop that the problem from happening in their mind, instead of just saying like, you know, we'll do our best to monitor this. If by the way, my phone is silence that I don't get a an alarm or something or I walk away from my tablet, and I don't hear that that's what they're worried about is that you then your kid has a problem. And then you say, well, we gave you the tablet, you were monitoring it, how did you let this happen? This is your fault. Like, so it's just it's liability. It's like everybody trying to
Jacqueline 51:12
say things. So common sense that, you know, I understand that there's going to be human error. There's human error when she's with me, I'm monitoring it at home as well. Right? You know, but if an extra set of eyes, I'm sure would have been nice.
Scott Benner 51:28
It's all common sense, right up until somebody can sue somebody, and then everybody hides in the corner and covers there as
Jacqueline 51:35
well. I hope that they get sued for not having it. Like they're going to show me, to me like declining, declining us. Declining, the technology that would help you to keep a child safer, is putting that child in more danger.
Scott Benner 51:49
Yeah. But that, you know, that's a coin flip at schools, whether or not somebody's going to want to follow or not.
Jacqueline 51:55
I know. Yeah. It's which is why, which is why we're learning online this year, because I can't, I can't fight I don't want to fight anymore. And I'm well, and she she chose it to she was tired of it too. I'm hoping by the time she gets to middle school, that she will be self sufficient enough to not need help at all from the NURSE
Scott Benner 52:24
Are there? Are there not other school options for you? Or will she at middle school be in a different system by then.
Jacqueline 52:36
So I could put her in another elementary school. It's funny, I was thinking about putting her in this one that was supposed to have this great nurse and then the nurse quit right beforehand. And it's just the turnover right now is through the roof. And the staffing right now is really bad. So I feel like even if I did find the perfect situation, there's no guarantees that that person would even stay.
Scott Benner 53:00
Yeah. Are you do you work full time?
Jacqueline 53:03
No, I work part time. I teach online.
Scott Benner 53:07
Okay. Is there a world where you? But you were watching though, right? While she was at school? Yeah, yeah.
Jacqueline 53:15
Yeah, I was I was managing from home and I was going in there like maybe once a week and, and it was stressful, because she has a T slim now as well. And she doesn't always respond to her alarms. And so I was having to call the school and just trying to do everything from home. It was just a lot. I was just, it was a lot.
Scott Benner 53:37
Yeah. So because what I was thinking was isn't Wouldn't it have been possible for just like, we'll take these check in times that the nurse wants, and you'll check at those times?
Jacqueline 53:49
Well, and that's why did towards the end of the school year. Because it was getting so out of hand, she was missing so much class. I got with my endo team, and we got a new health plan together that says she has never to go to the nurse unless if she's below 60. Or she doesn't feel good, or she wants to go to the nurse, right? So we essentially kind of fired the nurse. And that's when I started doing everything 100% from home, which again, it's like, it was still a lot. And she's still she's very self conscious about her pump beeping so sometimes she would turn those off. Or if she's in the middle of a project or in the middle of doing something she didn't want to deal with it. I have to call the front office, they have to go get her.
Scott Benner 54:36
How often was that happening?
Jacqueline 54:39
Maybe once or twice a week in the school doesn't
Scott Benner 54:42
have phones. You had to call the front office they had to go getter. They couldn't just call the room and say hey, send Bell Well, I would try calling
Jacqueline 54:49
her cell phone and sometimes she wouldn't answer and the worst was when she was at recess. I tried to get the teacher to hold on to the phone but she didn't understand like how to answer it or whatever like Oh gosh.
Scott Benner 55:02
Again, you do not work for the Arizona travel council or whatever. I'm not I love
Jacqueline 55:08
Arizona but our education system is is is, is it's very, very tough. And in Arizona, even teachers at charter schools don't even need to have degrees or certificates. So. And I went to school for education, and I'm telling you a lot of the teachers with degrees even. So
Scott Benner 55:34
let me tell you something. My mom is in a place where she lives in a place where they're monitoring her care. Okay, yeah. And two days ago, I'm talking to her, and I'm like, how's everything going, mom, and she's like, My blood pressure's high. And I was like, okay, so it was high enough to be concerning a bit high for a couple of days. So what are they doing? She said, Well, they gave me more blood pressure medication. And I was like, okay, is the doctor seeing, you know, they just gave me more blood pressure medication. I said, is that working? She said, No. I was like, okay, so I call the nurse and I say, Hi, my mom's blood pressure has been very high for four days. She's 80 years old. What are we doing? Well, they gave her more medicine. I said, is that working? And she goes, No, doesn't seem to me. And I said, Okay, I said, Okay, so what are we going to do? Now? She goes, Well, we'd like to wait a little longer. I said, Well, why don't we talk to a doctor? And so I said, I think maybe we'd want to speak to her physician who's making the decisions about the medication. Can you talk to the doctor for me? She goes, Sure. And I said, When can I call back to see what the doctor said? She was called back in 24 hours. I was like, okay, that's me saying, I know you're not going to call the doctor. Right. So I call back in 24 hours, I get her back on the phone, and I say, hey, What'd the doctor say about my mom's blood pressure? Oh, you know, I usually bump into him during the day, but I just haven't seen him today. So I haven't spoken to him yet. I was like, Oh, okay. Well, it's been 24 hours. Can you go speak to him? Now? She goes, Sure. I'll call you right back. I was like, great. I'll wait for your call. So she calls back and says the doctor upped her blood pressure medication again. And I was like, Oh, my God. I said, isn't that? And she goes, Uh huh. And I was like, what kind of doctor is he? And she goes, he's a GP. I said, so he's a general practitioner. It's a great isn't. What did the cardiologist say about this? And she starts flipping through. She goes, Well, your mom's never seen a cardiologist for this. Oh, my God, and I go, don't you think that'd be a good idea? She has a pacemaker, say two years old is just went through chemotherapy or blood pressure's up. It's high. It's consistently high, don't you think? And then the woman started covering her ass. The nurse, I was listening to her cover her ass while we were talking, you should probably talk to her doctor. Because I don't know the answers to these questions. I'm like You sure you do you see, or five times a day? You take her blood pressure every time you do No. So she doesn't take her blood pressure and see a problem and go, Oh, I have to help Bev. She says, I have to document this, because that's what keeps me out of trouble. And then I told the doctor now it's his problem. And so I said, Well, we're letting the GP make decisions about this. It doesn't make sense. She was well, I don't know, I'm not aware of his complete training. I said, You think he's a GP? And he's privately a cardiologist and keeping that a secret from everybody. And she and she's like, well, I don't know. You have to call him. So I call him. I say, Hey, I hear about my mom, blah, blah, blah, what are we doing? He goes, Well, I doubled her blood pressure medication. I said, is that working? And he goes, No. And I said, well, she's on a medication for pain. I said, a tiny bit of googling tells me that could cause high blood pressure. Well, she's been taking that for a while. So that wouldn't be it. I said, Are you sure? Why don't you try cutting it back and see what happens? Because if you just take a pill from her from it for a day, and see if maybe her blood pressure goes down? Why don't we try a little bit? Well, I don't think that's it. I was like, Yeah, but why don't we try it anyway? And he goes, Okay, I'll look at that. And I'm like, All right. And I said, and what about our senior cardiologist? And he goes, Yeah, she hasn't seen a cardiologist for this. And I went, do you think she should? And he goes, here, that's a good idea. I'll set that up. Yeah, that's a good idea. I'll say at least he didn't fight you on it. It's because I'm like, were you sat in the office, you're like, she's yelling at me. I was like, and you kind of you kind of crawled up. That's when I blossom. I'm at like, you guys know me like 47% You know what I mean? Like, I love being in fights, like this is the best thing that ever happened to me.
Jacqueline 59:41
Normally, I'm creating a confrontation. I don't know what it was, I don't know if it was just the subject matter of it, you know, and the it being about this and just just how overwhelmed and taken off guard and like I I've never been treated that way by anybody that's worked anywhere and to have the principal of your child's school treat you that way. I mean, I was in just such state of shock.
Scott Benner 1:00:07
Yeah. I I'm still pissed that we don't haggle over car prices anymore. We're buying cars. So it's one of my favorite things to do like every five years. Well, that's
Jacqueline 1:00:15
what I used to do. I was a sales manager at a Ford dealership. And I worked for Ford for four years. Then it was an internet manager at Nissan for two years. And I loved negative. It's my favorite. Yeah, it's so fun to negotiate and haggle. And
Scott Benner 1:00:33
we were young, we left and my wife's like, we argued for three hours and saved $1,000. I was like, you know, it's amazing, right? She's like, did it matter? And I was like, I don't know, I had a great time. Making
Jacqueline 1:00:43
$333 an hour. I know, he made $333.
Scott Benner 1:00:48
I'm like, I'm killing it here. You know. But so so then I so but think about this. The no one has my mom's best interest at heart in this story, except for me, right? And everyone is willing to do bare bones, basic, whatever it is, one nurse said to me, I swear to you, well, your mom is older and she has heart problems. And I was I said, Yes, she goes, heart problems don't get better, they get worse. And I went, okay.
Jacqueline 1:01:19
So to get better.
Speaker 1 1:01:21
Let's just say she's right. We're done. Are we done with her now? Like, why are we going to, we should just push her in the dumpster? Is that is that this like, you're not gonna try to do something? Because like, she just spent the last year of her life, defeating cancer. And now you're gonna tell me her blood pressure got higher, and oh, well, it's over now. Like, she actually said it to me in that tone. Well, like this, you know, this isn't gonna get better. And I was like,
Jacqueline 1:01:46
I'm like, probably She's probably just so jaded. She, she,
Scott Benner 1:01:50
she's the one in charge. She's, she's my mom's frontline defender, you know? And then I get to the doctor, and he think about this. If my mom seeing a cardiologist was a good idea, why did I have to call and say it? Because it was not going to happen if I didn't call? That doesn't make any sense, right? Yeah, right. So you think that that principal is going to put her ass out in the sunshine for you? No way. Not in a million years. If your kid has to go learn in her bedroom for three years, so that she keeps her job, then that's what's going to happen. That's it. That's what happened. I'm sorry. I'm sorry. I don't see this as being cynical, by the way. And I'm certain that there are plenty of people. And
Jacqueline 1:02:35
that's not the only layer to this, either, is she's really struggled in math. And I didn't realize the extent of it until COVID hit and I actually saw how she struggled in math. Yeah. And that's one thing she would cry about a lot last year. And when I would go to her teacher, I would get nothing. And so I like she needs help in math. And you know, a lot of kids when they're bad at math, it's like, okay, just don't get a job that has math in it. But it's like, no, you have to understand how numbers work to manage your health care for the rest of your life. Like you can't just not understand how numbers work, you know,
Scott Benner 1:03:14
exactly. And also not for nothing. But bailing on a 10 year old as unhelpful around math is silly. Like, well,
Jacqueline 1:03:20
and that's not what happened. What happened is I would call and ask how she's doing. And the teacher would say, Well, I don't know, she doesn't really raise her hand. She doesn't know she's struggling, because she doesn't raise her hand and ask and tell her that she's struggling. And I'm like, Okay, well, you know, she's not able to do any homework, and she's crying, but she feels like she's stupid, a sweat in class, and everybody else gets it, and she's not getting it. And I was like, I think she has a learning disability and math. And I said that repeatedly. I think she has a learning disability. Well, we don't really have any, any inner any programs to to do anything about that. Well, it wasn't till the end of the school year where somebody told me no, you have to put in writing, I'm officially requesting that she gets tested for learning disability. Okay, I send them an email and in writing, but it was too close to the end of the school year. So like, we'll do it. But when school starts, I'm like, Oh, great. Do
Scott Benner 1:04:10
you see that if we take that little parable that you just told me and pull out the words math and put in high blood pressure and a couple of other things? It's the exact story about me talking to the doctor about Yeah, right.
Jacqueline 1:04:22
It's just it's just, it's just complacency. And I'm, I'm sorry that, you know, I'm, that's, you know, I just I have higher expectations of people. And it's,
Scott Benner 1:04:33
yeah, my point isn't that it's, it's specifically in healthcare, or specifically in education. It's specifically in people that are like, listen, there's a process here. I am following the process. You have not written down the words you just said to me, and I'm not legally obligated to tell you that if you write it down, that we can get our help, or I don't know or whatever. And so it's a checklist.
Jacqueline 1:04:56
It's well there's there's there's two kinds of people. There's people that go to work and they go with emotions and they collect their check. And then there's people that are passionate about what they do and take pride in their work, and are there to really do the right thing and be helpful. And unfortunately, in my daughter's case, she's really been experienced to that first type of person in education, and health care. She's been very lucky, right? You know, and I could be here telling you the opposite story. She could have fantastic, you know, school and horrible hospital. And there's people with that, too. But in this case, we've had the complacency on the school side, and I don't even want to roll the dice to deal with that, again, because I've done so much I started reading again. I know she has dyscalculia dyscalculia is math learning disorder. That's about as common as dyslexia. But it affects a certain part of the brain. And I've been with, I listened to every podcast, and I've read everything I could about it. And it explains why she didn't learn how to ride a bike until she was nine. It explains why she has trouble understanding how time works, and how money works. And all this other stuff, like with numbers are really difficult for her to comprehend. And so her online schools gonna be testing her for dyscalculia. But, again, after my research, I'm like, Okay, this is, I'm so relieved. I'm like, Oh, my God, I can we could actually do something about this week, there's actually like, a try. There's actually, you know, processes, we can, you know, combinations and tools to use to help people. And there's a lot of adults this that, that suffer from dyscalculia that but nobody knows about it. They just feel like they're, they're dumb, and they're not.
Scott Benner 1:06:45
You know, how money works is one of the signs that I might know a lot of.
Jacqueline 1:06:49
Yeah. I love but it's sad. I mean, because my daughter is she's very, very bright. And she reads like a fish. She reads all the time. And she writes all the time. And she's very intelligent. But when it comes to numbers, they just, her brain just doesn't process them. For everybody else. And, and with diabetes, that's scary to me, you know? So like, she needs to understand number concepts.
Scott Benner 1:07:18
I'd also like to see her have a little savings when she's older. That'd be nice, you know?
Jacqueline 1:07:23
Well, it's not necessarily about like managing money. It's more so like calculating change and understanding amounts. And really like that
Scott Benner 1:07:31
time, how does time fit into it?
Jacqueline 1:07:33
Well, basically, especially like second through fifth grade, that's when kids are learning like all these different number models. So you know, you count in base 10. But when you when you do time, you're in base 12. You know, and then when you're talking about dollars, you're in base 100. And you're learning about all these different measurements, right? And a ruler is 12 inches, and there's 30 days in a month, and there's 12 months and a year, and I'm just kind of getting to remember all these different base value systems is really tough to
Scott Benner 1:08:10
to for some people, it just happens. And then for some people, it doesn't, right, okay.
Jacqueline 1:08:15
It's a physical brain thing. We're like a certain part of their brain on one side isn't communicating, you know, so in these people, one of the podcasts they listen to, they were saying, when you give these people calculations, when they try to do calculations, the language center in their brain lights up. And so the math center, so super interesting. It's just like, it's a different, different way of thinking.
Scott Benner 1:08:41
Now, listen, everybody's not going to think exactly the same way. But you could have the basics and somebody could help you, especially when you're 10 years old. That just makes sense. So I you know, I don't I listen to your making the sound like I can't even make fun of Canada anymore. This is what Arizona is.
Jacqueline 1:08:59
Like, there's it's not it? Well, you know, it's everywhere. And there's there's there's great schools, I'm sure we're in Arizona, there's great schools in Arizona, and there's horrible schools in Arizona, and there's great schools everywhere and horrible schools everywhere, I'm sure except for maybe some places don't have poor schools because everyone there thinks education is important. But here Oh.
Scott Benner 1:09:22
All right, Jack. Well, listen, let's start talking about whether or not we got to everything you want to talk about. So I'm gonna look, you've said some things in your notes that have not come up at all. Yeah, so wait a second. You've recently got married?
Jacqueline 1:09:41
I got married in April.
Scott Benner 1:09:43
Oh, okay. All right. That is very recently.
Jacqueline 1:09:46
Yeah. Yeah, yeah.
Scott Benner 1:09:48
So there's so there's that that that must be difficult for kids to like. I mean,
Jacqueline 1:09:53
well, we were already living together for a few years before that. So it wasn't really too bad. It was just a party didn't really change our lifestyle or anything.
Scott Benner 1:10:03
Okay, I understand. Alright, that makes sense. All right, well, then let's let me ask, is there anything we haven't talked about that you wanted to talk about?
Jacqueline 1:10:12
That you have been we haven't talked about was the custody thing? And
Scott Benner 1:10:20
how well how does custody work for you?
Jacqueline 1:10:24
Ah, so, right now it's kind of 5050. With school being back in session, it's 5050 for my son, who's in middle school, and then for my daughter, it's, she's here everyday during the day, and then she's with him three to four nights a week. So I, my daughter's here a lot more.
Scott Benner 1:10:49
How does how does? How was the custody issue with the diabetes.
Jacqueline 1:10:53
So my ex is a recovering alcoholic. And he. So he's been, he's been doing great for a very, very long time. So but it's just kind of one of those things where once you have that, in you, it's like any addiction, right? There's always a chance of something happening. So when when my daughter was diagnosed, my ex was already going through a lot with his he had family members. He actually had a family member that went into the hospital the day before. belted my daughter did. And he had another family member that was having that he needed to help with because the other family members in hospital. So he had a lot going on. And then the thing happened with my daughter. So I was really worried for him that, you know, that could trigger something. And then about a month after. So it's so for me, like as a mom, like even before diabetes, there's just kind of always this like, like if something happens, like if this if his wife were to leave him or if something were to happen to his parents, like I was worried like he could start again. And what happened was,
Scott Benner 1:12:17
yeah, how does that impact like day to day stuff?
Jacqueline 1:12:22
Well, it wasn't well. So his wife, like I said, is amazing. And she handled a lot of the diabetes stuff, especially at first when he wasn't really able to process it because he was going through a lot. But about a month after she was dying. She went on vacation, like she left for the weekend, and left him home alone with the kids. And I got a phone call from the kids crying and terrified because he was very intoxicated, and they didn't feel safe. And so I had to pick them up and file a police report and do all this stuff. And my son had to give my daughter her Lantis shot, which he had never done before.
Scott Benner 1:13:11
Oh, Jacqueline, you broke up.
Jacqueline 1:13:14
It's not that she wasn't under stupid. She can. Like she could be thinking six and right a nine.
Scott Benner 1:13:20
You broke up again, your your son had to give your daughter Lantis. And
Jacqueline 1:13:25
yeah, and my you know, my daughter isn't, even though she likes to give herself the shot, I always want to double check that it's the right dose, because sometimes she can think one number and write down another number. So she can mix up numbers very easily. And my son has never done this. And I wasn't even sure he knew how much to dose her. So that was happening. So I had to go pick them up. I was actually at my parents house, we drove across town. I had to file a report and go back to court and get more testing done. And then he had to do some, some testing. So and he did and he went through everything and he and he got it back together. And she's his wife is like, I mean they're doing the best that they possibly can. And I can't and I'm grateful for that. But it's just it was just some an additional little trauma that she endured. So they've endured some she's endured some trauma. Yeah. So that's just a little it's kind of in the back of my mind if if she's not there will be take advantage of the situation and give in to those impulses.
Scott Benner 1:14:44
So it's kind of scary. That sounds scary.
Jacqueline 1:14:47
I mean, diabetes is scary. And I'm just and just as a mom, I don't know if all moms are like this but or parents are like this, but there's just a certain level of paranoia that I always have a certain level of like Worst case scenario with them that I always am, you know, is wondering. So it just kind of adds to that a little bit.
Scott Benner 1:15:12
I think I understand. Yeah, it's a rough situation. Yeah. I mean, even on your son who all of a sudden got thrust into like, I'll I guess I'm gonna give her this shot, you know, is uh, I mean, I'm it sounds like they took care of it, but the circumstances make it. It's not a triumphant feeling under those circumstances.
Jacqueline 1:15:33
Right? Yeah. That's yeah. Well,
Scott Benner 1:15:38
alright, Jacqueline, listen. I don't want to say your life to show but it's not great.
Jacqueline 1:15:44
I have a great life. Wonderful. I'm, I have a wonderful, wonderful kids, I am madly in love with my husband. I'm, I'm grateful that I have the opportunity to be here with my daughter, and I don't have to keep fighting with the school while I'm at a full time job. You know, so I have got a lot to be grateful for, though, for
Scott Benner 1:16:03
sure. No, I was teasing. There's and who wouldn't be somebody about that? I just I was like, it's just it's a heavy conversation. Get it? I mean,
Jacqueline 1:16:11
yeah, yeah, it is. It's
Scott Benner 1:16:16
because especially, I mean, listen, the alcoholism aside, if, if a couple of people in your life just wanted to do a slightly better job, or be a little more valuable to the people around them, the most of these big problems you have just wouldn't exist. And it would take such a tiny bit of effort on their part to, to remove a lot from your shoulders and from your daughter. And, and everything, you know, and it's, that's what's frustrating to me, is
Jacqueline 1:16:49
Oh, yeah, if, oh, if she was able to go to school, I would be teaching in the classroom right now. Right? Right. It's just so you're in Arizona, where we have no teachers in the classroom. You know, there's such a shortage here, everyone's desperate for teachers. I can't be there. I can't teach in a classroom right now. Because my daughter has to come first. You know, if I knew she was safe at school, and they were watching her, and I could trust them, then I could be teaching in a classroom. But I'm not.
Scott Benner 1:17:19
It just doesn't seem like it would take that much for that to happen. You would think, yeah, it's a little bit of will, that's all like the will to do it. And, and that's most of it, I think they would find that the actual effort on their part would actually would go down, not not up, like, like actual effort put out would go down, safety would move up.
Jacqueline 1:17:43
And they have they had for type one diabetics in the school. So they had four kids doing this. So you know, multiply the number of nurse visits by four. And that's how many times she had somebody coming in interrupt or when all she could have put them off for on the tablet, and looked at the screen.
Scott Benner 1:18:01
I wonder if I wonder how much of it is, is job protection of like, well, if these kids don't come down here, then what do I do? Like I wonder if that ever popped into anyone's head? Well, there are
Jacqueline 1:18:13
two there were actually two nurses and one of the nurses was really great and open to it. And then the other nurses. Oddly, oddly clinging to their odd like clinging to this more. Yeah, and it's unnecessarily. It's like, it's like government, right? Like, like, like, Why do you have to make things more complicated difficult than they have to be? Like, just just make it easy on yourself? It sounds like the one there's a technology.
Scott Benner 1:18:44
Yeah, it just sounds like the one nurse is stuck in the way they do it.
Jacqueline 1:18:48
Yeah. And she and she took it. Oh, gosh, I can't tell you this. She said it's so personal. You know, stick is so personal when I wasn't happy with with the way they were doing it. Like she's missing too much class, she I you know, I want I would much rather her be remotely monitored. So she could stay in class. She's healthy, you know, and she she took it very personal. And after that confrontation happened with the principal. The next day, she didn't let me in her office, she picked her head out to talk to me, but the door closed around her head. And then like she was really hostile with me for the rest of the year like so much so because my son used to meet me at the nurse's office. He goes why is the nurse so mad at you? Like she was openly like yeah, like junior high level like junior high level like I can't stand you I'm not going to give you eye contact or smile in your direction. I'm going to frown and look in a different direction. And I I just It's just It's so wild to me like I don't I've never seen adults behave that way in any professional, any setting. I just
Scott Benner 1:19:57
that's it's incredibly unfair. It In the end, it's just incredibly unfortunate luck. You know, just bad luck that those are the people you ran into. Yeah, so I'm sorry. All right, Jacqueline. I appreciate you doing this very much with me. I really do. I I hope you had a good time even though we talked about some bummer stuff, but but I thought it was. I thought it was good conversation.
Jacqueline 1:20:20
Yeah, it's fun. Cool.
Scott Benner 1:20:23
Hold on one second for me, okay.
Well, Jacqueline did her part, didn't she? That was wonderful. And you know who else chipped in Omni pod Omni pod.com. Forward slash juice box, get yourself the Omni pod five or the Omni pod dash. It's up to you. You get to choose. But whatever you choose, choose it through my link, Omni pod.com forward slash juice box. I got a bounce in my voice. I'm getting on a plane tomorrow to go visit my daughter for a couple days for Parents Weekend. So I'm kind of excited. Anyway, that's neither here nor there. What else? Oh, wow. I gotta thank you for listening, of course remind you to tell other people about the podcast. If you're enjoying it. I mean, if you really love it, leave a five star rating and a beautiful review. Wherever you listen. Don't forget to check out the private Facebook group Juicebox Podcast type one diabetes. Oh, you know what else to hold on? If you know some people with the type two diabetes, I just put out a great series about type two. Can you please let them know about it? We're trying to spread the word. So all I'm asking you to do if you don't know where to find this information, fair enough. That private Facebook group under the feature tab will have a whole list. And gosh, I want to say yes, here it is. You go to juicebox podcast.com. Click on the top type two diabetes. There's a whole menagerie there. And Azure, you have information for people who have pre diabetes, or type two. Thank you so much for listening. Thank you for sharing. I'll be back very soon with another episode of The Juicebox Podcast. Hey guys, just jumping in to remind you that one of our sponsors BetterHelp is offering 10% off your first month of therapy when you use my link better help.com forward slash juicebox. That's better. H e l p.com. Forward slash juicebox. Better help is the world's largest therapy service. It is 100% online boasts over 25,000 licensed and experienced therapists and you can talk to them however you want text chat phone or on video. You can actually message your therapist at any time and schedule live sessions when it's convenient for you. Better help.com forward slash juicebox save 10% On your first month.
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#897 Hey Bird
Sian's child has type 1 diabetes and they live in Scottland.
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+ Click for EPISODE TRANSCRIPT
DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello friends, welcome to episode 897 of the Juicebox Podcast
Andre show I'll be speaking with cn she is the mother of a child with type one diabetes. She's from Scotland, and she's delightful. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin. If you're a US resident who has type one, or is the caregiver of someone with type one, please go to T one D exchange.org. Forward slash juice box and complete the survey. completing their survey helps to move type one diabetes research forward. Your simple answers to simple questions are going to do it. That's all you need to do. Just answer the survey takes like 10 minutes T one D exchange.org forward slash juicebox help type ones help yourself. Help me complete the survey. In fact, if you need anything that the sponsors offer, using my links is a big help. It really is juicebox podcast.com. All the links are there, and they're in the show notes of the audio app you're listening in right now. Just click on the links or type them in a browser to support the podcast. This show is sponsored today by the glucagon that my daughter carries G voc hypo penne Find out more at G voc glucagon.com forward slash juicebox Today's episode is also sponsored by Dexcom. And of course they make the Dexcom G six and brand new Dexcom G seven continuous glucose monitoring systems. We just got an email from us med yesterday that Ardens G sevens are on the way she'll be making the switch at her very next CGM change. You good to dexcom.com forward slash juice box.
Sian 2:10
My name is Seon. It's a bit of a funny name. I know so it's a Seon and I live in the Highlands of Scotland in a very small village and I have four children. So life is very busy. My eldest is 13 I then girl I then have identical twins Macy and Darcy Scarlets, the eldest Maisie and Darcy. They are 11. And our fee is four who has diabetes. Maisie has diabetes, one of the identical twins
Scott Benner 2:42
are 11 years old. Yes. Identical. infers that her sibling is the girl, right?
Sian 2:49
Yes, Darcy? Yes.
Scott Benner 2:52
All right. I got it. Here's my first question. If you're from Scotland, why can I understand you?
Sian 3:01
Okay, so I live in Scotland and my husband's Scottish. But I'm from England.
Scott Benner 3:05
See, I thought you sounded awesome. I was like, Wait, what's going on? And why is she so clear?
Sian 3:10
I don't sound Scottish at all. And I've lived in Scotland for over 20 years. And if someone asked me to even attempt to do a Scottish accent, I wouldn't have a clue. I just my accent hasn't changed in the slightest from living up here. I I'm not good at accents.
Scott Benner 3:26
When you when you first met your husband, and you were around a mixed group of people and say some of them were like American English speaking. And your husband started speaking. Did you think no one understands him?
Sian 3:38
No, I always understood him. He doesn't have a particularly strong Scottish accent. But I can remember bringing him home to my mum and my sister was there. And they would just be saying, What's he saying? What's he saying? I say well, don't ask me just speak to him. Ask him to repeat it. They couldn't seem to understand him, but I always could. He's quite gentle accent.
Scott Benner 3:59
But you've heard me talk about my brother in law, right? No, sure I have my brother in law is from Scotland. Okay, and I don't understand a word he's saying most of the time.
Sian 4:11
There are some some areas of Scotland that I really, really struggle.
Scott Benner 4:15
And at the end of his statements, he often goes I which I don't know what that means is Oh, and there's like a lot of like, grunting but it's like pleasant Scottish grunting it's not, you know, it's not like it's not like German or Russian growling you know what I mean? It's just sort of like, it's like, he goes, it's like Bing, bing, bing bing like this. And he and I hear a word. I'm like, Oh, he's talking about the economy. You know? And I just start keyword listening for words about money and inflation and things like that. We're about since Scotland dizzy from I wish I knew. I'm sorry. He lives in Pennsylvania. He lives in Pennsylvania now, but because not for a split second. gotten rid of any of that accent. And I just watched him Talking and, and his face is lit up. Like he's making points and gestures, you're smiling and like nodding along and he's like, oh, and he thinks we understand this. And it's possible. He's living a completely, like muted life like, and he doesn't know it didn't he mean like, it's almost like, it's almost like he's speaking in a voice isn't coming out, but he hears it in his ears. And he believes everyone else hearing it. Just like yeah, you put your hands on his shoulder like, and then I and I'm like, yeah, and then it's over. I could have just agreed to like, wash his car. Give him $1,000. Like, I don't even know. I'm just like, yeah. I'm glad you can understand your husband. That's nice. Yes. Okay. Yeah. All right, would you? Where did you meet this boy? Why did you get drugged to Scotland?
Sian 5:52
Well, we met in Oxford. So we're both at university in not at Oxford Oxford, Oxford Brookes, which is another university in Oxford. And we met through a mutual friend there. And then slowly, he has moved me further and further, under the one CI, like, seriously, we were in Edinburgh, which is quite, quite central. And then he got me to the highlands. He's actually from Thursday, which is as far up as you can possibly go. And that's only an hour and a half from us. But I am not going any further up then than I am. Because everywhere. Even now it's an hour to the closest cities, the closest airport cinema, you know, any of the big shops is an hour. From Thursday. Oh, it's two and a half hours. So no, I'm not going any further.
Scott Benner 6:44
I think you know, you're in trouble when they're considering filming Game of Thrones where you live? Yeah, exactly.
Sian 6:49
That's it.
Scott Benner 6:51
I have to tell you, you just made me laugh. Because you're like we met at Oxford, then there was like a pause. You went? Well, not Oxford, Oxford, like, like it was it was almost like you said, Oh, we met at Harvard? Not the one you're thinking of though.
Sian 7:06
I always feel I should clarify. Because otherwise it sets up expectations.
Scott Benner 7:14
I'm talking to a brilliant person who's lost in the woods. And you know, then you're like, No, not that Oxford. A different one, not when you've heard of. It's like an annex. Anyway, so you guys are I mean, you have the background, right? Like we have a Scottish background, we have an English background, there's no surprise here at all that you have an autoimmune disease in your family. So how many of your family lines
Sian 7:47
we have no other type one that we know of, at all in the family. So it was a big surprise when Maisie got diagnosed. But it's not uncommon in the highlands. So there is a lot of type one, and that just seems to be increasing and increasing and increasing. scarily fast at the moment. But in our village, which probably has about 400 people, there is for type one children. So on a bus of 24 of them have got type one is not
Scott Benner 8:26
Yeah, they'll be able to take over and another five years.
Sian 8:30
The strange thing about it is that they don't actually talk about it. My eldest, Scarlett says that the siblings talk about it. But the actual type ones, one of them might say to the other, oh, what are your bloods today? Or right now? And they say, Oh, I don't know. 5.5, or whatever, I put a table up so I could quickly actually,
Scott Benner 8:53
you just reminded me, I don't know why your accent didn't get me to open up the conversion chart.
Sian 8:58
But so so but it's a it's a Honduras. And that's really it. Whereas I thought that they would communicate more about it. But I quite liked the fact that they don't talk about type one all the time, because it means it's not at the forefront of their mind. You know, they're they're just normal kids who have type one, but they don't need to talk about it all the time. It's lovely for the parents. You know, I've got several friends in the village now who we can support each other. But the children don't tend to stress about it that much.
Scott Benner 9:31
I guess if anyone ever has a seizure, they'll probably get stabbed multiple times with different needles.
Sian 9:36
That is exactly. You know, I my husband and I had to fly down to London for a funeral a few months ago. And I had to, I left, left all the children here and a friend was looking after them. And I said to him, do not panic, you know, well do panic if Maisie she's never had to before but if suddenly she has a horrendous hyper Oh, and she needs to have that orange injection because we still have that one. Don't I'm not going to show you how to use it call 909. But just run to any of these three people someone will be and they will come and do it for you, you know, there's always someone around that can offer some support. So it's quite comforting to have them near.
Scott Benner 10:21
You know, when you say your village, in my mind, they're like, I don't know, round structures with straw. And a little, like a little, I don't know, there's like a, like a water collection in the middle of town. And you're all within like 40 yards of each other.
Sian 10:41
Well, did I. I mean, the roads are quite narrow, and it's almost like a grid of roads. Stone cottages really?
Scott Benner 10:52
I think there's no old woman like tanning leather outside right now or something like that?
Sian 10:57
No, currently. No, we're just this tiny little village right next to the sea.
Scott Benner 11:02
That's nice. That sounds very nice, actually, except for this nice, cold. There.
Sian 11:07
It is. Yeah, it's frustratingly cold. You know, my mom is in Essex. And she'll be roasting and read Love. We really do love the summer just in France. And it was so lovely to have some heat. And up here will be freezing. I'll have the fire on and they will be literally melting. It's quite. It's quite annoying.
Scott Benner 11:27
Okay, so what about other autoimmune stuff in your family? Celiac, or? I don't know.
Sian 11:34
No, the only thing that my granddad and my mom do have a little bit of is psoriasis. Is that autoimmune? Is that something that you've mentioned before? Psoriasis? Skin? Yeah. Yeah.
Scott Benner 11:46
What about IBS? No. Okay. Well, she really is lucky, isn't she? Yes, sir. Is is an autoimmune disease. But does the CDC, the CDC says it is? So it is?
Sian 12:01
Yeah. That's really it. Certainly the we're aware of. So it did come totally out of the blue when we're Maisy was diagnosed.
Scott Benner 12:14
Wow. That's crazy. How old was she when she was diagnosed?
Sian 12:17
She was nine. So it was right at the beginning? Well, it was it was just two years ago. On Monday, she had her second diversity. So it was in the middle of lockdown. And her behavior just ah, it just hadn't been right. She couldn't concentrate couldn't focus. She was agitated. And you know, now I've just have such horrendous mum's guilt because we'd go for a walk or go for a bike ride. And she was so slow. And they're all very sporty. So I couldn't work out why she was suddenly lagging behind. So you know, I say come on lazy. Stop being so lazy. What's wrong with you? I'm going to take you to the doctor's, you know, there's something going on here. And she says, Oh, no, I don't know. But she just she just wasn't right. And then just before they went back to school, I was getting them ready to, you know, sign right in the shower, etc. And I walked in the twins at that point, showered at the same time. And I walked in and looked at them. And I said, oh my goodness, what's happened to Maisie she was skin and bones. It was It was awful compared to Darcy who just looked like this strapping, you know, beautiful, healthy child. And then her identical sister, who was suddenly just shriveled. And I was just like, basically on the scales. So she weighed herself and then I got Darcy to weigh herself amazing. had lost a stone, which is just over six kilos is that way.
Scott Benner 13:54
I love I love it that you translated it to another nother measurement that I don't know.
Sian 14:00
Okay, 14 pounds. She lost. She lost a fair bit of weight. And I got Darcy on the scales. And then I texted a friend who's got identical twins and one of them ever put on masses of weight and or lost lost weight? Or has there ever been a big gap between them? And she was like, No, you know, really only a couple of pounds. Oh, this is odd. But I persuaded myself it was a growth spurt that Darcy must have had and she'll Maisie hadn't you know, I didn't realize I hadn't weighed them. So I didn't realize that she had really lost the weight. I was just like, this is very odd, but I kept explaining it away. And then they went to school for the week. And then at the weekend, it was a Saturday. And she the three girls went off on a club. And my eldest came home and I can always remember she just walked into the kitchen, banged her hand on the table and said right I think that maybe he's got type one diabetes as it were an earth have you got that from? He said, well, she's constantly going to the toilet. We had to she had to go and go to the toilet this club, but three times she drank my water, Darcy's water, her own water. She's lost all that way. You need to phone, NHS 24, which is like the out of our number that you can ring outside. Don't be so silly. And I phoned my sister. My sister said, Well, I have been thinking about type one as well, because a friend of hers had been diagnosed. She said phone NHS 24 Do it now. I was like, No, I just take it to the doctors on Monday. You said no, no, no, do it now. I phoned them up. Thankfully, they took it really seriously and said, Yep, you need to take her to the hospital, just to the local hospital. And I remember going out to my husband, he was in the garden saying, babe, they want me to take Macy to hospital and he was off for goodness sake. This is this is this is daft. Surely not. as well. I have to you know, they've said Take care. So I have to she was around her friends on the trampoline. So she was perfectly you know, she was fine. She was fitting well and bouncing away. So I just said to Maisie, you know, you've lost all that weight. And the doctors just want to see you. She literally jumped into the car. And we drove up to the local hospital got out of the car. She didn't have her shoes on. So it was really embarrassing. Walking through this hospital.
Scott Benner 16:30
I'm a good mom. I swear to god. Yeah.
Sian 16:32
I mean, honestly, I am so sorry. She hasn't got any shoe. She's just been on the trampoline. You're bringing
Scott Benner 16:38
the news? They're like,
Sian 16:41
yeah, shoeless skeleton, and he's so passionate. You know, she looks fine. Let's just have a look. So he took a, you know, we sample and he was like, oh, oh, I wasn't quite expecting to see that. Oh, and he said, There's glucose in this. We're going to have to do a finger prick. So he did a finger prick. And he, he just straight away. He just said, I am so sorry. But your daughter's got type one diabetes? And I said No, she doesn't. He said she does. Because that No, no, she doesn't. And he said yet. Yes. She really does have her bloods at 25, which is 504 150. She She really does. And you need to go home, pack a bag and take her down to the, to the hospital in Inverness. And I said no, do you know, my husband, for some reason brought home a bottle of Fanta today. And she's been guzzling because she's so thirsty. The Fanta. It has to be that. And he said, Well, was it sugar free Fanta? Or was it? Did it have sugar? I'm not sure I found my husband's I found my husband. He's like, Oh, sugar free. I didn't want it to be sugar.
Scott Benner 17:58
Let me try it. I don't want her to have diabetes. Does that have an impact on this at all?
Sian 18:04
Obviously, now I know that a glass of Fanta isn't going to send non diabetics blood up to 400 or 50. But at that point, I didn't know that. So he was like, Okay, it's definitely it's definitely diabetes. It's nothing to do with the Fanta. So you do need to go to the hospital. You do understand this Mrs. Evans? Don't need Yes, yes. Yes, I understand. Okay. drove home. I said to my husband, they say Macy's got type one diabetes. And that's really one of the only times she cried, we were in the car, going home from the local hospital. And she said, What is it? I said, I honestly I don't really know. All I do know, though, is that I don't think it can be cured. And she was like, oh, and she just started crying. You know, I think what we both did. And when I got back home, my husband said, I can't deal with this. I'll take her to the hospital. So he went down to the hospital with her and I stayed at home with the other children. And he found out within half an hour and said, Yep, she's definitely got type one diabetes, as they're identical twins, Darcy's got about a 70% chance of developing it at some point as well. And I was just like,
Scott Benner 19:21
what's the, what's the percentage that gave you? Well,
Sian 19:26
I've been quoted different ones. I think the lowest I've been quoted is 40%. The most I've been quoted as 80%. So I don't know just a high percentage that Darcy could, and you know, there's lots of identical twins type one, certainly on the Facebook group in the UK sort of Facebook group, and whenever I see another identical twin being diagnosed, I always send them a little message and say, you know, how long between the first diagnosis and the second one And the average is normally about two and a half years. So you're I mean, there's some totally 10 years or never happened, you know, not never happened if I've seen on the group but yeah, so we're thinking could be, could be anytime. Any Cold
Scott Benner 20:17
War never your English is coming out a little too much. Here's the part of the story where you get in the car, and she's like, What is this? And you're like, I don't know, but they can't cure it. It was very blunt.
Sian 20:30
That was all I knew about type one.
Scott Benner 20:33
Exactly. Not exactly a party clown.
Sian 20:37
Bless, I'd really ever thought
Scott Benner 20:40
I'd ever get stuck here forever. I'll tell you that. Yeah. Oh, poor. Boy. My mom is cruel.
Sian 20:51
So, yes, so I then I found my mom and I said, Mom, the hospital are keeping Maisie in for about five days, and they want us both they're in me, because they have to train us both on everything. You're gonna have to fly up. So she got the sort of morning flight. And as soon as she arrived, I, I heard you down to the hospital and our, you know, our type one journey began. And that, you know, there was just such an incredible amount to learn at first. And to get your head around, and I really I struggled, I cried and cried and cried a lot. I just, I thought that our life was going to change so much. I can remember lying in the hospital bed just thinking how are we going to go away for the weekend? You know, how are we going to do anything that I'm just going to be worried all the time. But you know, you, you learned only when things get certainly easier and more routine. But at that point, I just felt completely lost. And I still feel bad feeling like that. The other three children might have felt like they lost their mum for a while, because I was so focused on Maisie and sometimes I shout out to Darcy. And I said Darcy, can you come here a minute? And she said Jimmy Maisie? No, I actually mean you this time. She was so used to be
Scott Benner 22:26
and that's pretty sad. She's like, you must not mean me you never talk to me. Right?
Sian 22:35
And Darcy is, you know, she's just so lovely. And she just gets on with it. And she never really causes me any bother. And yeah, and I think they really did lose me for a while because I just threw myself completely into trying to make this life as with Taiwan as easy as I could for for Maisie, but the rest of them, you know, I do feel sad about that.
Scott Benner 23:04
For Maisie she just doesn't want Mrs. Bad news to come back.
Sian 23:11
But, you know, I do I feel lucky. Now, in that. I find I find type one fascinating. And I could literally talk type one all day, because there's so much to it. And there's so much to learn. And it's interesting. So I how
Scott Benner 23:29
lucky I'm sorry. How did you get to that from feeling like this? Is it we're done? It's over? Yeah, we might as well just go lay down outside and let the birds pick our eyes out to two. I like talking about this. It's not that impactful and how do you make that transition
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Sian 26:56
I read a lot in the first few weeks, I bought as many books as I could on type one, I joined the sort of Facebook groups. i This can lead me on to how I found the podcast actually. Because I can remember googling inspirational. People who have got type one, or celebrities. I think I Googled have type one. And through that I came across Adam Lasher Santana's nephew, yeah, and I really liked Santana. So oh, that caught my eye Santana. Oh, interesting as a Nisha, okay, so I googled Adam Nasha type one. And that got me to the Juicebox Podcast, because he was the first person you interviewed. That's right, isn't it?
Scott Benner 27:42
It is yeah. Yeah.
Sian 27:44
And that's how I came into, you know, the juicebox world. And that was really early days. So the podcast, following on the Facebook group have been part of my, you know, support network, pretty much from day one.
Scott Benner 28:01
That's crazy. Do you know, he, so I'm, gosh, whenever this was January 2015. And I'm getting ready to start the podcast with this completely backwards idea of what the podcast is going to be. And I was sitting down and recording these episodes by myself, where I was just basically talking through my most popular blog posts from the blog. And I did it for a little while. And then I was like, This is ridiculous. This is stupid. It doesn't sound right. I wouldn't listen to this. I deleted everything that I made. And while I was trying to figure out how to proceed, this guy pops up on American Idol. Not in the heyday of American Idol, but it still wasn't like an afterthought, sort of like it was to that it is now you know what I mean? Like, it's just last UFC of singing competitions. And this guy's got type one diabetes. And I just reached out to him, and I was like, Hey, do you want to be on a podcast about type one? He goes, Yeah. And that was, I had never recorded an episode ever when I recorded with him with. So I so my first episode was with a guy who was on American Idol. And I think that helped launch the podcast a little bit. So it's how I found the podcast. And then you've all these years later, you found it. That's crazy. Yeah. Really? Yeah.
Sian 29:21
Through that. Yeah. So I just did a lot of reading. I picked up lots of tips from different places. And I just, yeah, I just found it fascinating. And we, we were sort of, you know, we've been on it, you know, from from day one, we got to Dexcom very early on, not through the hospital, but I you know, I'd listen to you and I'd read about it and I have to have this so within four weeks. We funded it ourselves, but she was on Dexcom and that made things so much easier. And now when I, when we look back on I found one of her blood glucose diaries or to go and it said that she has had a Hypo This is before Dexcom she had had a Hypo. And then she has gone on to have four fruit pastels. Do you have fruit pastels, no sweets, so she had gone on to have four suites. And then the next reading she had be like, you know 300 Why she gone to 300. But then with Dexcom, you realize she really doesn't need four suites for hypo once we is really sufficient. So the hair God the way you treat things before you have Dexcom. And the way you do afterwards, is so different. You just can't do it, you're blind, you cannot do it without some sort of CGM or Librato. So we got we got Dexcom. And then she was MDI for 15 months now she's on T slim, with Dexcom. And control Rocky.
Scott Benner 31:04
Oh, that's excellent. I just want to make sure that the people from Dexcom heard that I just sold a Dexcom. In Scotland, that's really well did Yeah, you did. I can't I can't send you all the all the data, you know, but like, listen to what you hear people say, see, I have a question for you. Yes, I, when I see your name, it sticks out, right? It's spelled differently. And I think of you as a person who really enjoys the podcast, and it's like, and is a supporter of it. And I only know, it's odd that I only really know people through you know, little avatars and their names and things like that. But I want you to, if you can't explain to me why it's gonna sound like I'm trying to get you to say something nice about me. But really, I really want to understand why you so kind of excitedly enjoy it, because I don't understand.
Sian 32:01
Well, you know, I wrote down three things that go through my mind all the time about type one. And there are three things that you have said or done. So one of the first things I did once I joined the Facebook group, I think it was, was watched a conference that you're done. At some point, I'm not sure which one but you were telling a story and you're talking about must have been odd and having some pie, and that she needed a correction afterwards. So you then you then said something along the lines of if you're if you have a pie, and mash, or whatever, and you need a correction, then just give the, you know up the amount of insulin you're giving up front, the next time you have that piece of pie. And it was such a light bulb moment, I can remember walking into the school. That just because I had to race for pickup just after and I was just like, Oh, my God, that makes such sense. Why am I doing the same thing, giving the same amount of insulin for this meal, and each time knowing it's gonna go wrong and having to give a correction. That's madness. Why Why am I not just upping the amount of insulin? So honestly, that that just went, boom, of course. And then, you know, you often say they just need more insulin, and I do a lot of thinking in the shower. And I'll be showing thinking, why is Macy's blood so high? I don't understand it. What am I missing? Ah, she just needs more insulin. And I was up oppo ratios are at that point, upper level men now obviously just change that bump a bit. And then the other one that you say is trust, what you know will happen will happen. And oh my goodness, you have to It's so true. I know that she's going to have an ice cream, she is going to go higher later. So I can give her the extended because of that. And as long as you know it's going to happen. So treat it and I can't bear it when she goes over 10 180. And we don't we don't go really near that that often. Because I trust what will happen. I trust you know what you know will happen will happen. Yeah. And it has given me so much more control. We've always been quite mindful about doing things. She does what she wants, but we make a couple of swaps that she's happy with. And we are mindful about. Sorry. We're mindful about if she's going to have a treat or something like that she'll have it at the end of the meal. You know, like Jenny said before she doesn't really have anything carby before going to bed because it's just going to mess with her levels and we don't want that. You know I want to sleep. She wants to sleep. But I have learned a so much through the podcasts. And I think I've said on on a post before, and this is a bit morbid, but I used to panic thinking, if something was to happen to me, How on earth am I, you know, I can't impart all this knowledge to Ian. And what if something just suddenly happened to me, I just, I need someone else to, to a needy and to know everything, but I can't, I can't just download everything into his brain. I don't need to panic about that anymore. Because it's all there, the Pro Tip series, or all the information that I would need to give to Ian, you've got out there. So it's a huge worry. I don't have any more.
Scott Benner 35:40
Well, you know, I'm the only one that still has that worry. Because no one in my family is gonna listen to a podcast where it's just me talking. They will, they will stare at that podcast, like, I know what's in there. And I know I gotta go get it. But I don't feel like you're and have talked about? Well, I want to tell you, that it's, it's very, I don't even know what the word is like, I feel I'm happy that it worked for you that way. But moreover, it's, it's almost fascinating for me to hear, like, my light bulb, because these things you mentioned, they're just my light bulb moments from racing origin, right? Where I, it's, it used to be me talking to myself. And I'd be like, I have to trust that this is going to happen. It happens every time. Why do I act like the next time? It's not going to happen? Why do I keep bolusing for this meal, and then correcting two hours later? Why don't I just put the insulin up front and the Bolus? And these are not, you know, they were big leaps for me at the time. You know, because I was stuck in this. Like, I don't know, I counted the carbs. And it said five units. So she got high later, I guess maybe I kept expecting for it not to go that way. And it just never did. There's one day I was like, why are you doing this? Stop doing that, you know,
Sian 37:03
we're coming across all the information from you. So early on, you know, has just been, it's made this journey. So much easier. It really has, you know, her agency is currently 5.6. She's got the clinic in a couple of weeks. I'm hopeful that it'll be it should be Dexcom, you know, predicts it will be about the same. And really that that is I mean, I'm sure control IQ helps. At night, certainly. But all of this, the ease that we manage things. You know, so much of it is down to you and the information you get out there. So thank you. Thank you.
Scott Benner 37:48
I really, I listen, I like hearing it a little more today than usual. Because lately there's been this person who's like trolling me on online. And I'm getting these like short notes for them that are like, well, that episode was hard to listen to. You know, what would make this podcast better? If you didn't speak so much? I just was no, no, no. See? And listen, if if, listen, I know how many people listen to the podcast, if one person is drawn to telling me that that's I'm okay. You know, I don't imagine that only one person thinks. But this person thinks I'm sure. More than one person thinks that actually, I got one of my best reviews ever recently, that basically said that. Listen, I don't like that guy. But this is a great podcast, and I get great information from it. And I'm thinking that's like the nicest thing anybody could say to me, like you really don't like me. And you're still listening, like,
Sian 38:48
willing to listen?
Scott Benner 38:52
Because I can't everyone's not gonna, like your personality, you know, so. So that that I thought was great. But yeah, so I think the person's giving up now, I haven't responded to them. I think they were looking for, you know, they were looking for a fight. And I Yeah, to that person, if you're listening, I'm an adult. I'm not going to fight with you. But But, but it's still, it'll still like, hate every once in a while, like, well, there's a person out there who heard that episode and was like, this is garbage. I can't, this is terrible. And then no lie. Last night. I got a note from a woman who said, I want to be on the show. And I was motivated by that really excellent episode you just put out. I love that. She goes on and on about what she's what she loved about it. And then she tells me what episode it is. And it's the one that the other person told me was terrible and they couldn't make it through it. And I was like, oh, okay, I had to be reminded that everything I say can't be universally beloved. You know what I mean? That there are just going to be people who are like, I don't like the guy you know, so Anyway, it was nice to hear that you do, because maybe I'll stop thinking about that guy now.
Sian 40:07
Yes, then get him out of your mind. You don't need that negativity.
Scott Benner 40:10
The other reason I appreciate you sharing that with me is because I actually just finished up my, my slide deck for touched by type one, which I'm speaking at in Orlando in like four days. And I went over it last night, I was like, This is good. I like the way these are ordered. I can see how it'll pull me through the conversation. I don't prepare anything before I speak. So I just I look at the slide. And I was like, oh, yeah, I'm going to talk about this idea now and then tell a story or an anecdote or give an example or something like that, move through it. And you hit on. You hit on main ideas just now that i Last night was like, Well, I have to keep this and this has to stay here. This has to stay here. Right? And you said yes, thing. So
Sian 41:00
um, oh, that's excellent. Because yeah. And the only other one that is the fat and protein, what you say about fats and protein? And then I have an app on my phone, which I think someone was it yourself. Yeah. And that's so useful, so useful. And, you know, you put all of that together, and you're left with something that is, is more manageable than, than at first you ever believed it could be, you know, same bat lying in the hospital bed and crying and thinking, you know, we were meant to be going on holiday that year to France, and it was canceled because of COVID. But we, we just went we got back a few weeks ago. And we were in France for about three weeks. And I never believed that was happened, I really didn't. I was terrified of how the heat was going to affect Maisie and having the pump and the swimming pool and all these different things. And I actually ended up being myself for 10 days, I was I'm not sure what was wrong with me. But I was completely knocked out to the point that I barely looked at Macy's Bloods, which I glanced at my watch, countless times today, the same way her bloods are out. But I didn't even have the energy to look at that. And it was it was great, actually, because it meant that Maisie really took control herself. And she did absolutely awesome. And now, I used to always send sweet emoji. Oh, that's the other thing texting diabetes. I mean, Maisie and me have done it. Pretty much from the start. I got her a watch. And she we just text and I sent her a sweet emoji if I think she's going low. And she just, you know, does a quick okay, so that she's had a sweet, but now if I send a sweet emoji instead of okay, I get already had one. And that was really because I was ill, and backed off a bit on holiday. And it gave her some time to really have to get to grips it herself, which well, she did you know, amazingly blesser I can't remember see this.
Scott Benner 43:23
No, but no, you're fine. It's interesting that you're getting ill, it was a step forward for her for her care. And for you.
Sian 43:32
Yeah, it was and, and really, type one wasn't the most wasn't the thing on everyone's mind. In that holiday. It was, you know, way down the line, everyone was more worried about me, and what was going on with me. And the practical stuff of type one had to keep happening, you know, we had to change the pump, we changed the Dexcom, etc, etc. But everything else just was just our normal life. Well, and you know what that tells me, that's all that was happening
Scott Benner 44:04
yesterday. And what that tells me is that everybody should be paying attention for moments where their kids or you know, their spouse or whoever, they're very helping other diabetes and say to him, Look, today, I'm not going to help you. Or, you know, let's see what you do. Like I, you know, I'm gonna get on a plane on Friday, and I'm gonna probably send art and a text that says, I, you know, I'm not going to be any help to you for the next six hours. So and then it just forces in the right way forces a person to say, alright, well, this is on me. I'll, I'll pay closer attention because there's probably in Arden's head, always a part of her that thinks he's got my back, you know what I mean? And it can keep you from being vigilant in the right places, you know, in the right moments, and at the same time, you make this great point that it didn't overwhelm her. It didn't ruin The day or anything like that, that there, the way you put it, I forget exactly the word to use, because you use all kinds of Europe words and not my word. But there's something about the idea of diabetes becoming very functional and in the background and not in the front of your brain, you're not always sitting thinking like, well, what's gonna happen next to my ear? She's gonna get low two hours from now, I know that that stays out of your head. How much does Dexcom have to do with your comfort? With that? Oh, has to be
Sian 45:29
100%? It's, I couldn't I honestly don't know that I'll be functioning without Dexcom. I am. I am. And I worry a lot about everything. And I am anxious. I like to be in control. And without Dexcom I would feel completely and utterly blind. Yeah, I used to, I wouldn't go.
Scott Benner 45:55
I used Ardens Dexcom. This morning, too. So this is weird. But you know, Arden is a lady, which, you know, Macy will be someday. And she's had. She has different blood sugars throughout the month. And then she has different needs for insulin a couple of different times a month. And when they change, they change pretty quickly. And I can actually see her period start and stop in her CGM data. Wow. Like I know when it's happening just from what like what's going on? Like, I'm not I'm also reasonably aware of her cycles. So I'm not like, it's not like I look up on a Wednesday. And I'm like, what's happening? I can tell by the bend of the line. But I know, I know that she's about to get her period at some point in the next day or so. Right? And just how her blood sugar is acting over the last two hours, tells me that when she wakes up, she's going to have her period.
Sian 46:55
Pass mad, isn't it? I mean, I say it's amazing. Sometimes it is odd that we have this extra view into her. You know, she had this. She had some really horrible ulcers at the bottom of her lip inside her mouth, you know, sort of by her gum, just just this weekend. And she was in a lot of pain, I think what was going on here, but I was looking at her Bloods, which were totally fine. I was like, well, she's she's not getting, she's not getting a sickness or anything. She's She's, she's well in herself. Because if she wasn't, her bloods would be going a bit crazy. And I was like, this is weird that we have this extra insight into your body. And are you getting sick? No, you're fine. And you know, they've disappeared, and she's much happier because she can eat, eat easier again. But yeah, it is interesting, isn't it that we see something in our children that other people don't? You don't if you
Scott Benner 47:55
told me I could wear a sensor. And it would report back to an app and tell me, Hey, your vitamin D looks low, your irons a little low. You know, you should probably think about eating more red meat because of this, or you know, your cholesterol is moving up like I would gleefully wear something like that. Yeah. Yeah. Because definitely, because the what's the idea? We used to say about my little brother, Rob, Rob's either actively in trouble, and you're aware of it, or he's doing something that he'll be in trouble for later. And you haven't, you haven't found out about it yet. Such a scoundrel when he was a young person. And so anyway, the point is, I would like to know that there's something afoot. I'd like I'd like to be able to get ahead of it, because because I think there's a level of wellness that is attainable. And then there's this level of wellness that we live at, like you can go on, you hear people all the time, like, Oh, I've been tired for six months. Well, what if it was just, I don't know, your vitamin B and your vitamin D was off. And you're never going to know you're going to you're gonna drain down into the point where you drag your sorry, ass into a doctor and say, I'm dying here. Like, I don't know what's going on. Then they run all this blood work. And they come back and they say, Oh, well, you know, here, here and here. Let's address these things. And then months later, you start feeling better, because you've you've made this dress. How great would it be if it just a bell went off and said, hey, you know, eat more spinach dummy, like right now. Be great. Yeah. So and it would change. You know, it would change your life in a way that you can't imagine because we don't think of ourselves that way. But you just pointed it out with diabetes, because in this one specific scenario, blood sugar, we know exactly where it is constantly. Yeah, and you can fine tune it. But now you're doing it, you know, with diabetes. So you know, so bad stuff doesn't happen quickly. But you're, you know, other levels in your body being deficient or having too much also has a poor impact on you. It just happens so slowly, you can't quantify it, you know? Yeah. Anyway, I would take that if there's anyone out there. smart enough to make that happen. I just think it would be amazing to have like the results of, of of cam panel and a CBC and stuff like that, you know, running in the background constantly.
Sian 50:34
Oh, it would be good. Oh, keep ourselves in tip top shape.
Scott Benner 50:38
I also want to say real quick sand, just in case someone does take my idea and run with it. I'm patenting this right now. You owe me money. Okay, sorry. I just wrote a piece. I will I will sue. Now. Just kidding. I mean, sounds like technology. Obviously, that probably doesn't exist. Because if it did, I don't think we'd all be getting blood draws to get you know, things checked. But I just I liked the idea of it. So yeah. What else you have? What's on that list? Yeah.
Sian 51:08
Well, one really random thing on the list, our consultant, and I had never seen anything quite like it. So you know, I like to make things simple and keep things in control. And the Macy used to get really quite flustered when she was an MDI about rotating her sight. And she used her thighs for a lot of injections. And she put it off, you know, she spent ages touching her leg, have I done it here? Have I done it there? So how can I make this easier for her? So I ordered some henna tattoo pens, and we we made this grid on her lick on her thigh, just you know, with a number of boxes, and she just went up and down the boxes, doing her injections. And it meant that, you know, she didn't have to worry about rotating because she was always rotating. She was just going up and down her leg. And I can remember taking her to see the consultant. She said, Oh, I'm just going to check your sites. And she was like, what is that it's zero, I was trying to work out a way to make rotating sites easier for Maisie. So I just got these tattoo henna pins, and we just draw on her like a grid. And she works through that. And she's like, Oh my God. I've never seen anything like that before. But it works brilliantly.
Scott Benner 52:35
It's a very good idea because people get stuck. It happens the origin all the time. She's like, this is where it goes. I'm like it goes anywhere you want to put it really. So you know, like it's and then you start getting little lumps under your skin because there's too much insulin, you have to move it around. We just well. So there's been for years, I've known, you know, obviously I was saying earlier about art and having different insulin needs different times of the month. She also has different sites that work better or than others. And I don't pay any attention to it for years, I let her put her stuff wherever she wants. There are times that she's ovulating and she's puts it on her thigh. And I think don't do that because her thighs and her thighs not as absorbent. And work doesn't work as well as a couple of other places. And during ovulation, she needs more insulin. And so I said to her recently, like look, you're leaving for college. Now, here's the thing I've been doing for you for years that you're unaware of, as I've been putting in extra effort when your site doesn't match your needs. I was like But moving forward from now on these days. And she has a period tracker. I'm like these days right here. You were your pod on your arm. And these days right here, you can wear it wherever you want. And on these days right here it needs to go on your stomach. That's great. That's great. We'll make your insulin work better for you. Yeah, situation. Yeah. So
Sian 54:02
yeah, yeah, that's brilliant. I mean anything that helps the moment Maisie always were so cannula for her pump on her tummy. Rotation is becoming a bit of an issue because, you know, she she gets quite set in her ways of where she wants to, and she won't listen to me now. So I've said, you know, two weeks, we've got the appointment with a consultant, she's going to have to tell you more about where you can put it on your tummy, because you won't, you won't take it from me. And if she favors certain points. So hopefully she'll she does listen to the consultants. She's quite a rule follower. So hopefully, if they say right, you're gonna have to move it around a bit more. She will. In the past I have used Roblox robux is it wrote books about chess vouchers to get her to do things, a little bit of bribery. has helped bless her, you know, really wanted her to try. We really struggle with comfort So most drive me up the wall. And she didn't want to move it onto the, you know, her hips sort of top of a bum area. But I, you know, I bribed her and she moved it. And that had that worked for a while, but she's had sleeping so heavily, and it's always on the wrong side. So I have begged her to move to her thigh again, which she says no. So I will be nipping into the shops on Saturday, voucher and bribing her to try again, because she always thinks on her back and the number of times I have to get up and turn it over. Oh. So yeah, a little bit of bribery. blesser.
Scott Benner 55:42
Is her personality like yours?
Sian 55:46
In what way?
Scott Benner 55:47
You said she likes you said control for both of you.
Sian 55:51
Yes, yeah, she she does? Definitely.
Scott Benner 55:54
What about her twin? Do they have similar personalities? Are they different?
Sian 55:58
Do you know it's swaps and I don't know how much type one has to do with this. But it used to be that Darcy was very confident and Maisy was a bit shy. But actually, it's it swaps more recently that Darcy is a little less confident. And Maisie is more confident that we weren't shopping the other day. And you know, they each had a cash card or some cash. I can't remember to go and buy something. And Darcy felt too nervous to go through the checkout. So Maisie went twice. She paid for her things. And she got nasty stuff and won't remember. I was like, That's interesting, because it used to have been the other way round. Yeah, I'm not sure why, but Darcy's very pragmatic. She, she's funny. She's, she's really, they're both very kind hearted. But Darcy's probably a bit more easygoing. I think that all the attention that Maisie got in the first year of her type one turns around a little bit into a monster. So we had to, I had to stop. I probably did spoil her a bit. Okay. Yeah. So I had to dial it back. dial it back.
Scott Benner 57:13
Yes. humbler? A couple of times.
Sian 57:17
Because I was told in no uncertain terms by particularly the eldest Scarlett, but yeah, I have created a bit of a monster.
Scott Benner 57:25
I love how I love it when my kids come to me and explained to me what I'm doing wrong with parenting. Oh, yeah. You know what you're doing wrong? My son's like, here's what you've done wrong. I'm like, Oh, okay. kid living in my house. Got no money. He's telling me what's wrong. Oh, my God, that's fine. But they're often right. Honestly. The end? Yeah, it's, it's, um, it's, I find it helpful, actually, you know, when they're, like, Hey, why are you? Why are you doing this? And like, I don't know, man. I'm just like, I'm tired. I'm old. Like, I just, I'm doing my best here. But I didn't think any of this was gonna happen when I saw your mom's boobs the first time, which was really the reason any of you are here. It's just how mom was just how mom looked at a shirt one day. It's got nothing. I wish there was something bigger to it. But I was like, I really want to try to see them if I can. And then here we all are. 30 years later, yeah. Oh, no. Wait, so you're asking me what I'm doing? I don't know. You're not gonna know, either. And 20 years, so good luck.
Sian 58:29
Yeah, it's exhausting. I'm exhausted and overwhelmed quite a lot of the day.
Scott Benner 58:33
Yeah. I always wonder what people do who don't have health issues in their life? Like, what would I do with all that time?
Sian 58:40
Yeah. And what would I be what I mean, my husband always says, You always worried about something. You know, I worry about type one now. But I wonder what I would be worrying about is type one wasn't
Scott Benner 58:51
CCN you and I are different. I wouldn't be worried about a damn thing. Would you
Sian 58:56
know, I was fine. Something there's no doubt about that.
Scott Benner 59:01
There's a whole other me in here that you don't know. And he would be relaxed. But I but I do wonder that sometimes, like what do they do, like I look at all the time I spend here and there. You know, like just five minutes on this and five minutes on that. And you know, forget, I'm not even talking about the podcast. It's not a lot of time in our life, but it's still time. Or you know, when you're at a restaurant, you have to pick up like in my head, give me your phone. And I don't want to be asking Arden for her phone. You know, like I just I but here we are on like, Hey, can I get your phone for a second? And I've learned I used to say give me your phone. And now I say Hey, can I see your phone? Like it became important to her as she got older that I asked her permission to take the phone from her.
Sian 59:46
But yeah, I think most it'd be the same. Yeah.
Scott Benner 59:49
So I learned that but I'm also a boy. See, and so you understand, like, I don't think about things like that. I don't think about how I sound or what I'm big because I know my intent and My intent is pure. So I don't need to. I don't know, I don't I don't need to like, I'm way nicer on this podcast and I am in my real life. Because I don't know if you're a kook, you know what I mean? So I gotta like kid gloves. Like, while I'm talking to somebody, because I don't want someone going off on me. How amazing is that in 750 episodes, no one's yelled at me. I keep waiting for it. I keep thinking someone's going to come on under false pretenses and get on and be like, I hate you. And I hate this podcast. And it just doesn't happen.
Sian 1:00:32
If that if that happened, would you? You know, happy
Scott Benner 1:00:36
I'd be like, oh, please tell me why.
Sian 1:00:39
Like when you'd put it on to the out there. Oh, of course,
Scott Benner 1:00:43
though. Yeah. Well, I just, it's, um, it's just, it's a good conversation, like, for the same reason that I asked you, can you tell me what helped you about the podcast? I'd want to listen to somebody and say, Hey, what don't you like about this? Yeah, you know, yeah, now someone's gonna probably do
Sian 1:01:00
it. But I was just about to be careful with
Scott Benner 1:01:04
six months of people being like, and another thing, you're great. But, you know, it's just, I don't mind the feedback. Like, I don't take it off. Like, I've gotten feedback in the past where I've read it and thought, well, that's reasonable. You know, and I do this thing now where, when I make transcripts for the podcast, I use this online service. And I'm gonna pull it up now just for for fun. And so I drop an mp3 file online, and it turns it into a you know, a Word file that I okay line so people can there are people who read the podcast, God bless them. I think I'm hoping it's for reasons of like, auditory problems and stuff like that, not because they're reading podcasts, because it seems odd to me if you're just reading.
Sian 1:01:53
I used to listen to the West Wing weekly, religiously loved it. And but I sometimes did read it rather than listen.
Scott Benner 1:02:01
Wow. Yeah, that's not for me. Yeah.
Sian 1:02:04
I did. If I think it was if I was particularly looking for them to discuss a certain thing, and I didn't want to, maybe this into everything else at that point. So I would just have a quick scan. Oh, yeah. Okay, they did discuss it. I'm gonna listen to that one right now. See, and
Scott Benner 1:02:21
I have a limited, like edition poster made by someone overseas. Actually. It right behind me. It's, um, it's us Governor Josiah Bartlett for President. It's the greatest like it's a campaign poster. But from the TV show. I thought it was really great art when I saw it the way the person. But But So here, I just pulled up an episode that you all haven't heard yet. Right. Okay. And I am listed as a speaker and Margaret is listed as a speaker Margaret spoke 49% of the time, and I spoke 51% of the time. Okay. And so I my eyes glance over those numbers. When, when we when I make episodes now, and if I see the, if I see it splitting, I get like, okay, don't talk too much. Like I have that feeling. And there are some What do you like it to be?
Sian 1:03:17
5050?
Scott Benner 1:03:18
I like 6040. Me. But also, that's because I'm I read bumpers in the front where there's not another I read the ads in the middle I read at the end like it should be if it's 6040. Maybe it's probably more like 5050. Yeah. In the episode, if it's 5050, then it's probably really more like, you don't I mean, like, I'm probably talking a little too much. And then there are times when Jenny and I do like short management stuff, where I'm it's almost like a comedy team. But we're not talking about something funny. I do the big setup. And then Jenny comes in and gives her opinion. And so there are people who hear that and think Scott's talking more than her, but I'm putting you in the position so that when you hear her answer, it flows into your mind easily. Yeah, like, yeah, I set her up and she, you know, she kicks it. That kind of thing. Yeah, here's another one that just went up the other day. 55 me 45 Aaron, this. That's perfect. Like for me. There. There have been a couple where people start talking, and I can't stop them. I'm just like, I just give up. I'm like, Okay, go ahead, talk your face off. I don't know what to say. You know, just and then I'll look later and they spoke like 70% of the time and I spoke 30% of the time then I realized like 10% of that is me like saying like dexcom.com forward slash Oh, my God. I never spoken this episode, you know? But they all to me, they all How do I want to put this? There are episodes that I've made that I personally wouldn't want to listen to. And okay, and then I get great feedback from them. And it reminds me that I'm not everybody. So even if, even if the content is good, but I didn't like the flow of the conversation, or something, there's still someone out there who it will hit. And so it's valuable for them. It's almost like when I put up episodes about people who are pregnant with type one, they're very popular in a segment. But overall, they don't download as well as other episodes. Yeah, because not everybody is interested in having a baby or they already have or whatever. But I still see them as a public service. So I don't like when somebody says, I want to come on, like I have one going up in a couple of days. It's about IVF. I'll tell you, I can tell you this, right. It's about IVF. And pregnancy. That's what it was supposed to be about. This woman was going to come on and talk about in vitro fertilization, and her pregnancy and she was going to come on in like, like pregnant and talk. And we're having the conversation and you know, I'm just building the conversation of I don't know how far we are into it. 20 minutes, 30 minutes when I realize she's had a miscarriage. Oh, recently. And I just like, I got crestfallen. And I said, Why did you come on and do this? Yeah. Like, like you didn't like, and I started, I said to her, I'm like, Oh, God, I said, so many stupid things over the last 20 minutes. Like, I didn't know, you just had a miscarriage, you know, and she's like, it's okay. And, and I did not expect that to happen. Right? And so when you put that up as an episode, it's really going to help the people who need it. And yet there are going to be a larger percentage of people who are going to look at that episode, pass that by not listen to it. But I never think like, Why can't run this? Because I'm giving away downloads today. Like I don't I don't I think of it as like, it's a it's like a public service. Not everybody needs it, but somebody does.
Sian 1:07:00
Yeah, and not everyone needs at this point. But they may well need it at some point. And now it's there for you know, it's there for me and for Maisie in the future, to reflect back on
Scott Benner 1:07:12
Yeah. So, you know, it's, I mean, making the podcast is really was just somebody, somebody kind of flipped me around the other day while we were talking and they kind of interviewed me for a second. And I told them, like, I think of the podcast as a, it's like a compendium of diabetes knowledge that could exist forever. And that will mainly be valuable for a long time until until management somehow, like drastically changes, you know. And I told him that I just recently contacted the company that hosts my podcast, and I sent them an email and I said, this is going to sound morbid, and I'm, I'm not ill, I just but what happens if I die? Like, how do I keep this podcast online? And they told me and I'm gonna mention it in a few episodes, so that somebody hears at some point, if I suddenly dropped dead, and you just don't hear from me anymore, if you contact the company that hosts my podcast and tell them that I died, the hosted for free for the rest of the time, they're in business. Because because it's a medical podcast, and it helps people. Well, that nice,
Sian 1:08:19
you know, that's really nice. It's gonna happen to you. But yeah,
Scott Benner 1:08:24
I'm doing my bad. I'm not doing my best to stay alive. I'm doing a decent job. I was doing my best. I wouldn't have sat up all night last night. Arden is getting ready to go to college in a couple of weeks. And she comes into our room last night, she's, you know, she's like, Hey, she's like my legs. She's getting ready to get her period. She's like, my legs hurt. Like, can somebody robbed my legs. And this is now what I believe why women get married. It's just so someone can rub them when they get their period. I really believe this is all they're looking for. And so she comes in, and I said, You better hope your roommate in college wants to rub your legs and she's, I don't think she's gonna want to do that. And I was like, Well, I better talk her into it. And so and she grabs my iPad and starts looking at pictures and she finds old photos from like, my wife's family that have been scanned from like generations in the past. And she starts flipping through them and before I know it, we're flipping through like, my wife's family growing up through my family growing up into our young family. And, and before I know it, it's like 330 in the morning. Oh, my goodness, like I gotta go to bed ice and I'm yeah, I gotta get up and record with somebody in the morning. And I was like, you'll you'll just art and you'll just sleep while I'm while I'm up you know?
Sian 1:09:41
And you sound very sprightly. You don't you don't sound tired.
Scott Benner 1:09:44
Thank you. I got an iron infusion recently. I'm doing great. Oh, sorry. Good. I'm all jacked up
Sian 1:09:49
and how I am. I'm in a similar ish situation. Our eldest Scarlett, she is going to boarding school on Monday. they, Oh, wow. Yeah. And she won a scholarship. Bless her. She's done incredibly well. We're very, very proud of her. But I am finding myself crying. Often. We had a barbecue for her at the weekend, and I chopped up some celery and I was just sobbing, thinking, I can't do this. I can't let her go. And but then suddenly, you know, she's 13 and a half, you know, she's, she's not little, but she's, you know, still my baby. And. But then it suddenly dawned on me that if she's not happy, she can come home. That's it. Yeah. So as long as she's enjoying it, and hopefully she will, you know, it's an amazing opportunity for her. And it's a fantastic school that she's going to, and it's not that far away. It's only an hour and three quarters. And she's actually going to be home every month, whether it's for a weekend or for a holiday, you know? But yeah, my heart is, is hurting. I don't know how I'm gonna leave. The parents have to leave at four o'clock next Monday. I'm not quite sure how I'm gonna walk off of that campus.
Scott Benner 1:11:11
Crying. Yes. Sobbing being well, so Arden's going to college, some form, it's about a 14 hour drive from here. So it's a plane, if you have to do a quick like, we're leaving on, like, we're leaving at the beginning of September, like a full day and a half before she has to be there. And then wow, and we're taking we have to take two cars to get all of her stuff there. And you know, it's just,
Sian 1:11:39
it's gonna you emotional.
Scott Benner 1:11:41
I lately I've been saying to her, you know, are you sure you want to abandon me like this? And just go to college? I was like, you could stay and go locally. I'll give you money in a car if you want to stay. Yeah. Wouldn't you like money in a car? You know? So, but she's so excited about what she's doing and where she's going. antastic she told me that's amazing. Yeah, she said last night, she's like, I just want to go now. She's like, she's like, I went through not being sure. And I went through being nervous. And I went through being scared. And now I know for sure this is what I want to do. And she's like, but it's like two weeks from now I just want to go. And I don't know how to explain to her like, I Please don't leave, like just stay, you know. And then last night, while we're flipping through the picture, she points to this photo of her, like in a bouncy seat. So how old are you then you're less than, you know, you're about six months old. You put them in those little seats. It's so they can kind of learn how to hold themselves up, you know? And she goes, isn't it crazy? That That baby's going to college next month? Like what are you doing? Like so that it's three o'clock in the morning and I make me cry? You know, I guess
Sian 1:12:46
garlic keeps playing this Abba song. I don't know the name of the song from Mamma Mia. And the first words are something like school bag in hand. She you know, it's basically about leaving home. And I am just sobbing. She's playing it in the car and she's doing it on purpose, because she knows it's gonna break me.
Scott Benner 1:13:05
Well, you want to hear something every time you want to hear something worse. That song called slipping through my fingers.
Sian 1:13:10
That's what it's cold. Yes. That's the one. Right? So So I was just about to say thought oh, is Arden. Are you still gonna be following Adams numbers?
Scott Benner 1:13:21
Oh, yeah. She's not gonna be like that. No. She's, you know, she's going to be sleeping on her own with. I mean, we were going down getting her moved in. We're actually going to stay a couple of days afterwards. And, you know, go out meet her like, so she's gonna have I don't know how you would put this Are they flatmates? So, yeah, so she's in a, she's gonna be in a room that has two bedrooms. And there are two girls in each room. So there's four people in the flat, I guess. And I'm trying to say this in a way that you would understand. Ignoring, ignoring that 90% of the people listen to podcasts in America. And now we're like, just say that it's an apartment with two bedrooms, you know? So it's an apart it's an apartment style with two bedrooms. Right, two girls needs room. One girls from Hawaii, one girls from North Carolina Arden's from New Jersey. They've all met online, they've been chatting, you know, and stuff like that. But it's a strange thing. Like we're gonna have to take these girls out to dinner and sit down with them and be like, hey, so if Arden's thing you know, like, which one of you would be comfortable sticking this in her but if you know, like that kind of thing, and I feel badly for them even because they're also nervous and excited and etc, but we can't leave that space without those people understanding basic safety care for art, you know, is that to help yourself
Sian 1:14:47
and desire to never get a compression most.
Scott Benner 1:14:51
She hasn't recently, but she has. I mean,
Sian 1:14:56
if you phoned her and said turn over.
Scott Benner 1:14:59
Well, we're about the Find out because when she stays by herself, and we've been doing these little test runs for the last couple of years, like going to like Kelly and I went to a wedding and left her by herself for a couple of days. And she does seem to wake up when she knows it's on her. She seems more receptive. But if she had receptive to the sounds, but if she's has confidence that someone else is looking, then she doesn't hear it so much.
Sian 1:15:25
But I, the A few weeks ago, Maisie had a sleepover in the village. And I was running through the streets at 4am. Because she, she was sleeping in a little trailer with two other children. And I'd said to just push her into bed, try not to have a compression. I said, Don't worry, Mom, I won't because I can't actually turn over. We're, like stuck. Yeah, that's brilliant. Okay, great. So when I woke up to let me find the, to 50 with arrow down, what's this? This shouldn't be happening because she couldn't turn over so I don't understand. And then I just get l o w. You know, lo I'm like, Oh my god. So for I am I'm racing through the blooming village. Find her and one of the children had gone home. So she now had to turn over by his phones her five times. Nothing. She just, you know, her phone was on. But she was just sleeping through it. It makes sleepovers difficult.
Scott Benner 1:16:32
Then you get there. You're just like rollover.
Sian 1:16:36
You're fine, right?
Scott Benner 1:16:38
I'll make my way back. Luckily, the ladies out there tanning the leather. I can say hi to her. And I know you don't. In my mind. You live in the Smurfs Village. This is little mushrooms that you live in. That's not the case. I'm getting close. Do you love it? When I say something outlandish to people who are living in Canada. And they go yeah, that is kind of what? I think I'm being stupid. And they're like, no, there is moose in my backyard. And like I know. There's a there's an episode coming out next week. With that girl, Margaret, that I mentioned earlier, and it's going to be called Midnight gnocchi. Is that Is that how you say that? No, it's not there's a it's that's pasta. How do you there's a more of like, there's a fancy way of saying the word. Anyway. I wanted to name the episode Yukon asked shaker when you find out why you're gonna be so
Sian 1:17:37
is this an after dark episode? No, it's not. She
Scott Benner 1:17:41
just she was just found herself in the Yukon. Like, like, pole dancing, but with their clothes on in a casino and, and you know, and I'm like, I'm like, what is it? And she's such a nice crunch. You know, I'm like, how did you end up doing this? And she's like, I don't know, I didn't do it long, etc. And then I was like, did they throw chips at you? And she goes, Yes.
Sian 1:18:07
I was. I was laughing at the last one that I listened to. I can't remember the young girl's name but you were explaining the word.
Yes. What you said, Oh, we're having a lovely moment now.
Scott Benner 1:18:25
Just like you and I are gonna have such a lovely moment. I'm gonna teach you a word. Basically, she's like, 2122 years old. She's college. Yeah. And she's just trying to figure out how to keep creepy guys offer and drink it. Yeah. And I'm like, do you want to know what a kucha mountain? No. Then I realized she didn't. Then I started stopping because I was like, I don't think she understands what this word is either. So we started defining words as we were talking to her. She was really good. She was very honest about what it was like for her to be at college with type. Yeah, I thought that was really that was one of the episodes that my tormentor doesn't like,
Sian 1:19:08
Oh, really? Hard to get? I don't know it was I like listening to those ones about college because you know, sort of prepares me a bit for what to expect in the future.
Scott Benner 1:19:22
Listen, if I'm being honest, and there's no way for me to know people are what's in their heart. But I think this person that I'm talking about might be a dick, so don't worry about that they're just trying to be difficult. Alright, so, Stan, is there anything we haven't talked about that we should have?
Sian 1:19:38
Nope. I've gone through my list. Nope, we've covered everything. It's been a pleasure. Thank you so much. No,
Scott Benner 1:19:46
it's about my pleasure. Your accents. Terrific. You're great. You're great. You're exotic, and understandable.
Sian 1:19:53
I'm dreading this index. I actually hate my voice. Think I sound I was thought I sent like a mammoth. Because if I've got a cold and yeah, I don't know
Scott Benner 1:20:04
what, first of all, I haven't gotten to the point where I asked you if you've if you have any of those big Scottish cows there you?
Sian 1:20:13
Oh, yeah, not far. Yeah,
Scott Benner 1:20:15
they seem around the corner. I would love to see them in person one day, but that's Yeah, they're really beautiful. But what did you say about your voice? It's like a mammoth. Yeah,
Sian 1:20:24
like a woolly mammoth. I don't know why. But as a teenager, I always used to think I sounded like a woolly mammoth. If they were going to speak, I think they'd come out with my voice.
Scott Benner 1:20:33
It's like a snuffle off. I guess thing from thing.
Sian 1:20:37
Yes. Yes.
Scott Benner 1:20:38
So you think you're you think your voice sounds? Like muted? Like not bright enough?
Sian 1:20:46
Yes, yes.
Scott Benner 1:20:50
I don't see that. You know, there are four people in the Facebook page that have the Euro first name spelling. Really? Yeah, that's,
Sian 1:20:59
that's pretty pronounced that Shawn. I might be wrong. There might be a response to that. On the on the group, but yeah, Sean is the most common way of pronouncing but my mum decided to pronounce a Seon
Scott Benner 1:21:15
Do you it's your mom just illiterate? What is going on?
Sian 1:21:21
Why she chose it. I mean, my sisters Gemma, you know, why on earth did she call me Seon? It's just been such a and when people say it right the first time on Wi Fi. What?
Scott Benner 1:21:31
What's wrong with you?
Sian 1:21:33
Yeah, like my husband can't say my name properly. So he just calls me Babel.
Scott Benner 1:21:38
Are you the blonde in the
Sian 1:21:40
photo? Yes. Camping photo on your Facebook.
Scott Benner 1:21:44
Are you the blonde in the camping photo? Yes. Okay. Probably Probably. Other Other
Sian 1:21:50
in your camping photo.
Scott Benner 1:21:53
You have no photos up on online. So it's either you or your family went away with another woman? I'm not sure which it is.
Sian 1:22:01
It will be me. Yeah. We're not friends. Is there only a few that come up?
Scott Benner 1:22:05
Yeah, I just have a pop up. Yeah, that's all I was trying to stalk you for a second. while your kids are lovely.
Sian 1:22:13
Yeah, the cuties. Absolutely. Alright, so
Scott Benner 1:22:16
you have the cows. You sound like snuffle off, I guess. I don't know why. But didn't he wasn't he like depressed? Wasn't he like, hey, bird? Yeah. Oh, you don't sound like that at all.
Sian 1:22:32
I'm gonna have to find him now. Yeah, well, thank you. That's for some reason what I always I always felt like my dad once told me he thought I need to my adenoids out because I just always sound like I've got a cold that's always stuck with me.
Scott Benner 1:22:52
That's where you got that shining bedside manner when you're like, oh, it's diabetes. I don't know anything about it. But I know you can't get rid of. It ain't no thing where we take your adenoids out and you sound like Big Bird. I'll tell you that much. Oh my god. All right, well, oh, my little bubba. I appreciate this very much. Thank you for doing this. Thank you very much. Take care.
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#896 Rise of the Machines
Edward has type 1 diabetes and is here to talk about advancements in DIY algorithms. Android APS talk.
You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio - Radio Public, Amazon Alexa or wherever they get audio.
+ Click for EPISODE TRANSCRIPT
DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Friends, this is episode 896 of the Juicebox. Podcast. Welcome to it
today I'm going to be speaking with Edward, he is a type one, he's a father. And he's a computer programmer who uses Android APS to give himself insulin. And he's got a lot of cool thoughts about it. It's a lot to do with where things could be going where they are going. It's incredibly interesting. You're going to be daunted at first by the length of this episode. Don't be. Just settle in. Listen to the conversation unfold, and imagine what could be. While your imagination is running wild, 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. Here's a couple quick things. T one D exchange.org. Forward slash juicebox. Go complete the survey you're going to help diabetes research if you do that T one D exchange.org. Forward slash juicebox. You can get 10% off your first month of therapy@betterhelp.com forward slash juice box. And you can save 35% on your entire order@cozier.com By using the offer code juice box at checkout.
This episode of The Juicebox Podcast is sponsored by us med get your diabetes supplies the same way we do from us med us med.com forward slash juice box Why would you go there it would be to get your free benefits check. And to get started. Don't like the internet. Call 888-721-1514 Get started today with us med they always provide 90 days worth of supplies. They have fast and free shipping. The podcast is also sponsored today by touched by type one. Now I'm going to be speaking at the next touch by type one big event coming up soon. Check it out, touched by type one.org. Also find them on Facebook and Instagram.
Edward Robinson 2:16
So I am Edward Robinson. I am a father of four children. I am a computer programmer. And I was diagnosed with diabetes at age 18. In 2006
Scott Benner 2:35
How old are you now? 34,634. Okay, for hit? Yes. Is that uh, are you doing that for a lot of work? Where are we? Why are you building an army basketball team? What's going on? Exactly.
Edward Robinson 2:54
So I was one of four. My wife was one of three. And so we always wanted to have a few kids. And it's turned out to be four.
Scott Benner 3:04
Wow. Well, you did it. Are you is there like a hole in your floor somewhere where you just keep pouring money to send the kids to college with later or is that how that works?
Edward Robinson 3:16
No, I just go back to work and work more.
Scott Benner 3:20
Are you prepping them now? Because they're young? They imagine right? What are their ages?
Edward Robinson 3:24
They are young. So the oldest is seven. Then five, then almost three and then one. Or almost
Scott Benner 3:32
I'd be whispering in their ear. You want to be a short order cook. Someone has to pick up the recycling. Billy. Come on, buddy. You don't need college? I don't know, man. That's yeah. Have you ever thought about it?
Edward Robinson 3:49
Yes, yes. We started 529 For them quite early.
Scott Benner 3:54
Well, I bet you did. Yeah. Okay, well, congratulations. No
Edward Robinson 3:57
birthday presents just donations to 529 Oh, we'll just go to the park and save the money. Yeah,
Scott Benner 4:05
I want a lollipop. You take this quarter you run home. You put it the home before it just shut up. Oh, my God. I mean, listen, at a an expensive education at this point. Private education is 65 $70,000 a year. Right?
Edward Robinson 4:24
Yeah. And I can only imagine what it's going to be in.
Scott Benner 4:28
I have to tell you, there is an amount of money that my wife and I imagined when Cole was born. And we were wrong by 130% Maybe. So, I mean, maybe things will change. But seriously, I'd be like there's no reason somebody runs the cash register at Target and I think you'd be great at it. And I would, I would I would just get them a nice, nice blue collar job. Although, what kind of work do you do?
Edward Robinson 5:01
So I'm a software developer, I work for a small consulting firm,
Scott Benner 5:07
do you teach them how to code? Are you like, sit down? I'll show you Python today, like, what do you do with those kids?
Edward Robinson 5:12
No. So like, I actually build the application. So we work with different, different clients. And then they have different problems that they want to solve, and will work with them to solve their problems. It almost always involves building applications. But sometimes it's just like management help, or helping them solve their process problems and things like that. But usually, there's applications involved. And recently, I've been working on a project for artificial intelligence and machine learning.
Scott Benner 5:43
Wow. So far, which is really exciting. That's amazing. Actually, I'm gonna hear more about that in a second. If I asked you this question. And this is not oppression, don't take this the wrong way. If I said to you, Edward, I want to make an app that the people that listen to this podcast can have access to the show through, like, I want to make my own podcast app. And I'd like to be able to send them information through the app and break up the series into groupings for them. Would you like chuckle and be like, that's easy? Scott, I could do that on Saturday afternoon? Or is it a big thing?
Edward Robinson 6:19
So I don't do that much. Devote? I've done some Android and iOS development. There are other people on our team who have done a lot more than me and could do it in an afternoon. It would probably take me a weekend.
Scott Benner 6:31
Wow, that's insane. What did you go to college for that? And why are you smart.
Edward Robinson 6:38
I went to college for engineering. And then I within engineering, I studied computer science. So I've been writing programming, or doing programming since 2006.
Scott Benner 6:51
That's crazy. I'm watching my son. Now he just graduated from college. He's got a quantitative econ degree. And, you know, he's going through college, and every once in a while, he'd be like, they make us these these programs we've never seen before, but they don't tell us that much about them. And, and now he's graduated applying for jobs, and in his free time just sitting in his room getting certifications and like, anything he can find because he realized a little too late, that that should have been his minor. He took a mathematics minor, and he's like, I should have minored in this stuff. Because every one of these jobs uses this.
Edward Robinson 7:26
It's amazing how many jobs these days require programming of some degree. Yeah.
Scott Benner 7:32
It's really something and he's, he's picking it up. Actually, he said something incredibly frustrating. The other day, he said, I probably didn't need to go to college, I could have just taken all these courses. And all I could think about was the month. It was like, don't say that to me as like, even if it's true. Never, ever, ever tell me. You know what I mean? Like, please just don't say it.
Edward Robinson 7:59
But something is true, especially around programming. There's just tons of things you can learn online for little to no money. And you can find examples, there are still a lot of like foundational concepts that are a lot easier to learn at a university.
Scott Benner 8:15
Right. I also don't know how you get in the door without some sort of a degree. You know, I to me, that sounds impossible. But I'm sure there's some barrier to entry. Although I'll tell you my brother, my youngest brother is 10 years younger than I am. He was we I never talked about my brothers on the show. But my youngest brother was we used to say either in trouble, or you were about to find out he was in trouble. Like there was no like battlegrounds. You know what I mean? Like he was either doing something he shouldn't be where he was. And you didn't know where the cops were there. So like, you know, there was no middle ground for him. And coming out of high school. He just worked at a pool supply place. And I have to tell you, like my I growing up, my father had a very blue collar job. I don't know that he had any more expectations than that my mom did retail. You know, I think that's probably what he was thinking. And he just met somebody while they were at the job. And they said, you know, we think you could do this entry level thing in it. And now he oversees like a huge department of people who shoot satellites into space. And so that's pretty cool. I don't know how that works. You know what I mean? Like and he sometimes I look at him and I'm like, he's like He got he got away with it. Never went to college, never done anything. And it's making you know, he's making the money just like everybody else. So it's, it's hard to hard decide, but what what leads you to that where you just always inclined or are you super interested?
Edward Robinson 9:48
So I always enjoyed math and science. And so then I went into engineering because I figured it would use those I didn't plan on doing computer science. But I took a couple of classes in college and found that I was pretty good at it. Yeah, there's the first class was like basics of programming. And you had to write programs in, you know, pretty complicated programming languages. These days, there's a lot of like, yeah, click and point programs that you can set up and you can do it with your kids. But this was like hardcore. In order to even like edit files, you needed to know specific commands, and use these like, editors are pretty complicated. And I found that I was pretty good at it and, and enjoyed it. My roommate took the same class with me, and he was really struggling, and he just hated it and want to blow his brains out. No kidding.
Scott Benner 10:46
That's, it's listen. I am a person who in Hold on a second. There's my wife, not I mean, there's she's got two jobs. And one of them stopped the dog from barking.
Her other job is to come up with reasons why we can't have sex started to be so is there a real, you know, stuff she could put on her CV where she could really speak thoughtfully about being adept for sure. If she or he stopped, maybe she stopped. I made it to I was in a very weird situation, we'll get your diabetes in a second. Where I this is so it's embarrassing. They hold on a second. Now she has questions about the dog. But now she doesn't know she needs management. And here we go. She tells me she's I can do it. I can do it. I got pulled out of my kindergarten. But this is going to pull back a curtain on me. I guess I got pulled out of my kindergarten class. And I remember it like right now to this day, my teacher, somebody knocked on the door, my teacher came over to me and said somebody wanted to speak to me outside, I went out in the hallway and this big man, you know who now I realized could have been five, six, I have no idea what was standing over top of me. And he started talking to the teacher and the teacher kind of bent down next to me, I remember her name, it was Mrs. Moon. And she said, Scott, this man thinks you're smarter than the other kids and they want to give you a test. I was like, It's not good for a five year olds ego. I was like, yeah, those other ones do seem dim to me, I get what you're saying, like, let's let's get me separated, you know. And they gave me an IQ test, which I now realize was an IQ test, I realized it because they gave it to me every year, like every year at the beginning of the year. And I'll tell you that I will not tell you my IQ. But I test the same exact number every time I take it. Even if I were to take one online right now I just hit that number, I don't understand what those tests are, how they work. And it was probably the worst thing that ever happened to me. Because in the 70s, they were doing something called a might state state they call it academically talented. And I'm gonna tell you, Edward, I am not academically talented at all. If you just you know, make the list of STEM stuff in your head and assume I'm not good at any of it. Just I don't know what my IQ helps me with. But it is not those things. And so I beat my head against that wall till eighth grade, like in a room with people who were clearly just smarter than I was that, you know, everything we did, they were better at, they understood it more quickly. And when it came to the math, I was really lost. Like really, really lost. They tried to put me in algebra when I was in sixth grade. And I don't know if I've ever told the story or not. But maybe a semester into that that year. I pulled the teacher aside after class and I said, Listen, it's too late for me to drop this class. I'm stuck. You know it and I know it. I don't understand this. I'm never going to understand this. We're in trouble here. Right? I'm making a deal. And he's like, what's this? Imagine I'm in sixth grade.
Edward Robinson 14:17
I'll give you 20 bucks. How old does
Scott Benner 14:19
that even make you in sixth grade? I mean, I was five and kindergarten. So 67892. I was like 11 years old. Okay, maybe 12. And I'm standing in front. I'm like, listen, here's what we're gonna do. I talked him into allowing me to sleep through his class for three more semesters. And I told him I was going to take a general math class in summer school to make my credit up and he said, Okay, like without even a fight. He just was like, alright, and we kept that. Three quarters of the year. We kept that agreement. I came in I didn't bother him. I failed his class. He failed me just zum zum zum and I went to summer school If I do not when you start putting numbers and letters next to each other and telling me they equal something, I can feel my brain short circuiting. I cannot follow it. Like to save my life. And the reason I tell you that
Edward Robinson 15:11
I'm always impressed by your math skills on the podcast. Sure.
Unknown Speaker 15:15
Sure.
Edward Robinson 15:17
I don't know if you have a calculator ready when you do it, but
Scott Benner 15:21
I can do simple. There's usually pretty good action. But my point is that when I listen to my son talk about math. I think our mailman must be really good at math. Because I can't imagine he's my kid. The way he understands numbers. It's really bizarre. Like, I don't know, it just happens for some people. And, and for others like me, by the way, it did not happen for so
Edward Robinson 15:47
well, on the on the flip side, I really struggled with other things like, you know, reading and history and other classes like that. So yeah, nobody gets everything.
Scott Benner 15:58
You're being delightful. I didn't do any of this. I can't believe I have a high school diploma. My I forget what year it was in middle school, we had this great English teacher, and he's like, we're going to read Romeo and Juliet. And we're going to read it together. And I was just like, Oh, I'm not reading that. And we had my senior year of high school, on my first day of my senior year of high school, the English teacher said, we're going to do a research paper, but don't worry, you have the whole year to do it. And he explained what it was and this whole thing, and I swear to you, I raised my hand. And he's like, yes, your question about the research paper? I said, I do. I said, What happens if I don't do it? Can I still graduate? And he goes, No. And I was like, Yeah, I got a job. I don't think I could do this. And I was just like, it sounded impossible to me what he was saying, and I'm sure if I was back in that room right now, he's probably saying, you know, make yourself acquainted with something and write a four page paper on there. It was not a big, it wasn't a big deal. But he was asking. And to my convictions, I kept good grades in that class that whole year. And I thought, like, he can't fail me for not handling one paper. And I didn't handle the paper, and he didn't fail me. So anyway, his bluff did not work on me. I don't know. So I think that's where my intellect works. It works in. Like, it's why you if you hear me say like, if the zombies come find me. I'll be okay. But we're not gonna do any algebra. Anyway.
Edward Robinson 17:43
So I think, God, I think it's interesting that I think a lot of times, people assume that they can't do things. But I think if they find the right ways to learn it, that you'd be surprised how people can do it. So I always thought that I was terrible at music. When I was growing up, I tried playing the piano, the guitar, it was just a disaster. It sounded horrible. But a few years ago, my wife found a piano for free on Facebook. And we went to go pick it up with a U haul. And I was like, why on earth? Are we getting a piano? This is going to be just a waste of space. But I I tuned it. And I learned a couple of songs on the piano. And I was really surprised how finding different ways to learn it. I mean, just watching YouTube videos, but how I was able to actually learn something that I had always assumed that I was just terrible at and it just wasn't going to work for me.
Scott Benner 18:43
No, that's a great point. And the truth is that I think one of the things that got in my way of expanding when I was younger is that I was adopted. So that nothing about my, the way I saw the world. Did anyone else see it in my house, and those people were in charge of giving me things to do? So they would direct me towards? I mean, no one really way I can say just like more blue collar endeavors like I went to school, because I don't want to paint them as like preppers or something like that. They're not that but I went to school because the state makes you send your kids to school. So that's why they sent me to school. They sent me to school so they wouldn't get in trouble. And it was a great place to park me lives while they were working. Yeah. It was. It was free childcare that no one wants said to me, you know, when you're in high school, you would go to college. Like I didn't take the LSAT. I went to I remember being in school the day I realized my friends were signing up to take the LSAT, and I didn't know what they were doing. Like I had to ask a friend I was like, why is everyone doing this? Is this something I have to do? And and they're like, No, you take this they give you a score and then you send the score like that that was being explained to me like I was like I was from another planet you know, and I'm I was like, Yeah, I'm not doing that. I was like, I can't go to college. I No one's ever mentioned college to me before. And then I did look into it a little bit. And even at like a local community college level, I couldn't afford to do that. And I don't mean like, I couldn't afford college. I mean, I couldn't, but I couldn't afford a car to get me to the college. Like, like, there was nothing about my life that was going to send me to school. And no one ever wants, you know, rigged the board for me to get to the end. And so I just, I went to my, my high school graduation, we came home, my mom gave me an ice cream cake to celebrate, I remember that. And then I went to bed got up at five o'clock in the morning and started working full time in my uncle's sheetmetal shop. And that was it. It's just what I thought I was gonna do. Like, my friends all went on vacation. And they were like, I was like, I gotta go to work. And I just, I graduated from high school and went to work. So I don't I think you're right, I think if someone would have pointed me in a different direction, and given me a couple of pointers, I might have been, I might have been in a different situation. But as it stands, you don't want to ask me about anything particularly technical, except for some reason, diabetes, that I see that I seem to understand. Okay. All right. So do you work with your kids with a DD? The little like, was wiggy? Like, stuff? Do you think they'll be interested? Or do you think you'll be like me one day, would you like these kids have none of my interests at all.
Edward Robinson 21:30
Um, they actually already have it in kindergarten, they've got some like, code ish. Like games and things like that, for kindergarteners, which is really amazing. I think really just getting them to enjoy math and science and other things, but also exposing them to everything as much as we can. It's what we really like to do. My son, we're actually super proud. He just had a birthday party. And we were making up pin the tail on the donkey games. And so it's like, you know, pin the arm on the robot or things like that. And he wants to do pin the science on the stem. Look at that. And
Scott Benner 22:16
yeah, let's get that get a good job on that. I like that. I think I was actually inclined to it. Because if you've ever heard me talk about it, I bought the first RadioShack computer. Like I had it. And it was all about programming. And I had programming books, I couldn't figure the first thing I tried didn't work, I gave it up. And I realized now the reason I gave up so quickly, it was financial. Like, I took me so long to save up the money to buy this computer, that when it didn't do what I thought it was going to do, which really just meant that I did something wrong. I took it back right away, because I couldn't afford to own something that that didn't that didn't do something for me. So it's interesting that how that stuff impacts you. Anyway, sorry, there's a long way to go. I was just very interested. So you're 18 and 2006. You're on your way to some sort of a dork Olympics. It sounds like to me. You get diabetes. Is there? Yeah. Is there anything that would have made you think prior to that day that type one was a possibility for you?
Edward Robinson 23:26
I knew nothing about type one. Didn't couldn't even tell you what it was.
Scott Benner 23:34
Nobody? Nobody, nothing. Yeah.
Edward Robinson 23:37
Nobody in the family. My grandmother had some thyroid problems, but nothing
Scott Benner 23:47
was linked to yourself. You wouldn't look at your grandmother and be like grandma's hair falls out a lot. I'll probably get diabetes one day. Yeah.
Edward Robinson 23:53
Yeah. So I started losing weight. I played a lot of sports growing up in high school. played soccer, lacrosse, hockey, skiing, snowboarding, tennis, all sorts of things. But I wasn't playing sports at the time. And I started losing weight. And my parents were concerned and they, they actually told me that I needed to put on weight and forced me kind of start drinking milk. Which is like the worst thing that could have happened. I'm sure my blood sugar just went straight through the roof for hours on end. And one day I went on the treadmill and afterwards, I felt amazing. I was like I'm gonna take up more running. Now like no, you can't run because you're losing too much weight.
Scott Benner 24:49
Keep drinking the liquified fan. It'll be okay. Yeah,
Edward Robinson 24:53
this is helping you. The I mean, they're they're absolutely wonderful, but it was just kind of ironic. because it worked out. And then. And then finally they're like, Okay, we gotta go see a doctor. And so I wanted to school to take a test. And then afterwards, they took me to, to the doctor. And there, they tested my blood sugar. And it just read as high. So it must have been, yeah, over 400 or some something crazy high. Yeah, to be off the meter. So then we drove to Yale, pediatrics for diabetes. And on the way there, I fell asleep or passed out in the car. And the next thing I knew, I was in the hospital, and they're trying to get me into this bed, and I woke up and I was like, trying to push people away. And they, and then I guess I fell asleep again. Okay, and you're sort of woke up? Do you think at some point later, the K
Scott Benner 25:57
or did they ever say? Uh, maybe.
Edward Robinson 26:01
I mean, I, part of me wants to call them up and see if they have my records from, you know, I mean, ages ago, but I don't know if they would, because
Scott Benner 26:09
I'm actually I'm looking at you today. And I can only see you from the shoulders up. But there's something about your frame that makes me think you're tall. Is that fair? Not particularly No, just five 510? Oh, well. All right. Listen, still, I'm trying to imagine them getting an 18 year old view from the cart into the hospital that you noticing like you had to have been out of it.
Edward Robinson 26:29
Yeah, my mom said that she tried to wake me up. And I wouldn't wake up in the car. They had, the doctor had said you could call the ambulance. But by the time the ambulance gets here to then take you to the hospital, it'll just be faster to just drive me straight there. So I went there. And so I was diagnosed, I started on MDI, so it's two shots a day with, I don't remember what the insulin was called. But it's the one that's cloudy, and you had to like roll it before taking that, and then Novolog. And so I do a shot in the morning and shot in the evening. And every day I would call in to the to the doctor's office and give them my numbers for the day. And they're telling me what shots to do and how much to eat for like the next day.
Scott Benner 27:21
How long did that go on for?
Edward Robinson 27:24
So that went on for six months to a year. And then I got it on a Medtronic pump.
Scott Benner 27:31
Wow, wait for for a year, every day you call a number, like you were.
Edward Robinson 27:39
I think that after a few months, I had to call in, like once a week or
Scott Benner 27:44
something. Okay, still, that's amazing. Even if it was just a few days.
Edward Robinson 27:48
I remember this was in like the time of like, beepers and stuff where you call a number to send a text message to a beeper, and things like that. So
Scott Benner 27:57
that must have felt like it must have felt like you were spot looking like just a disembodied voice on the other end, you're like 118, she's, she gives you coordinates back and you're like, yes, yes. Okay. And? Well, that's fascinating. That would have been a much cooler way to think about it. Yeah, you probably should have had a little of my brain that would have helped you not be sad. I'm assuming you were. And you're also missed this call. This is going to college age two. Right. So this happened to you. Sounds like in high school, because you said you still went to a PDF.
Edward Robinson 28:28
And it's actually right before spring break. And I still went on spring break to the where'd I go? I don't know, somewhere in Mexico or something for spring break. Which was a lot of fun. But you went to a probably not the best idea.
Scott Benner 28:45
But did it? See? It's interesting, isn't it? Because, you know, I interviewed a woman yesterday 72 years old, said diabetes for 50 years. She doesn't have one thing wrong with her. It's just fascinating. Like, you don't I mean, like you just It's interesting how, I mean, she describes her care in the past and you think, like, how does she not die? 40 years ago, you know what I mean? Like, like, eat and it was in a time when the expectation was I've done a few older people's interviews this week. And a gentleman who was older as well told me, you know, when as soon as I was diagnosed, he's like, they you know, it was a shortened lifespan. It was you're not going to live as long. Yeah, don't even worry about it. Like you said his care was even centered around the idea that you know, we're just trying to keep you going for as long as we can. And if you were getting cloudy, then I mean, that was still that that was that kind of care. Did you ever have that feeling? Did anyone ever say something like that to you?
Edward Robinson 29:49
It's so the doctors I remember them putting a really positive spin on it. Being like, you know, there are these basketball players who have diabetes or like these other famous People there, lots of people have diabetes, it's gonna be totally fine. And I remember thinking to myself like, Okay, I've diabetes, whatever, I'm just gonna live my life with it. And things will be fine. Little did I know. Yeah. What all that is gonna be? Yeah.
Scott Benner 30:17
I think they were probably telling you about Chris Dudley if it was 2006 He's been on the show, maybe? I don't know. I mean, he's the only one I can think of. So, you see, you're a little naive, right? went off on your trip, and then you headed off to school. But they gave you a pump your freshman year in college. Yeah.
Edward Robinson 30:37
So I started on a I forget what the maker was, but it was before Medtronic. So I started on a pump. And then a few years later, I switched to a Medtronic pump. And I was on those for a while.
Scott Benner 30:53
So did you go to human log? At that point? Do you remember?
Edward Robinson 30:57
I think it was Nova
Scott Benner 30:59
Nova log. So Nova log in a pump. And that changes your company. So you went from like calling people to doing everything yourself?
Edward Robinson 31:08
II? Yes. I didn't do it well, but I did it myself.
Scott Benner 31:13
That's what I'm trying to get. So what were your outcomes, like in college?
Edward Robinson 31:18
I don't know. But they weren't really great. I remember having lots of lows. And but when I had lows, I was kind of funny. These days when I get low, I just still like normal and can think, but I would like say ridiculous things or you know, do funny things. I'd get really stubborn sometimes. My girlfriend at the time, who's now my wife, she would tell me all these like stories where she would be like, you have low blood sugar, you need to have something to eat. And I'd be like, no and aren't get argumentative. And she'd be like, you know, what, if, if you don't have something to eat, I'm gonna call your mom. And then I put my hands over my mouth.
Scott Benner 32:04
Like, sort of like home alone. It's like, oh, my god like that. Like, no, like,
Edward Robinson 32:09
You can't force me, I'm just gonna cover my mouth.
Scott Benner 32:14
Like you're four years old at work.
Edward Robinson 32:18
Yeah, and then another time, I had low blood sugar, but I thought it had to be high blood sugar. And I didn't have my meter with me. And she was like, I'm just gonna eat these cookies, and put one here next to you. And of course, I snatched it up and ate it.
Scott Benner 32:35
I just had a moment with Arden the other night where I was like, you have to do something about your low blood sugar. And she's like, I will. I will. I said art. And now like, if you do it now, you're not actually going to get low. Like I can see it coming like this is going to be like, This is a 50 If you don't do something, and she's like, she's like, I will I will. I will I'm not hungry. I don't want to have a juice. No, do this. No, no, get out of my room. I'll take care of it. I'm like, okay, so I mean, you know, I walked out of her room and sat like up the hall waiting because her blood sugar was, you know that I saw it go the other way. And I was like, okay, she got it. But I know I know that thing. Like you lose your you lose your cognitive ability. You just, you know, and you think you're making a ton of sense to, which is Yeah, it's really interesting. And your friends loved it. Right? Because you turn it into a goofball. Right, exactly. Yeah. You're lucky they didn't figure out how to give you insulin just to make you a low just to pass the time. Someone give Edward a unit. So he says something stupid. She's and your girlfriend who becomes your wife afterwards? She saw all that in college and married you. Wow.
Edward Robinson 33:50
She did. She did. And my mom was even like, you know, he's got diabetes. It's gonna be a lot of work. Are you sure you want to marry him? And
Scott Benner 33:58
Oh, thanks, Mom. You want things? It's easy to get? There is it was a totally fair thing to say. Well, yeah, but someone got to be on your team. I pulled her aside. I've been like, Listen, I have no other prospects. This is not something that wasn't okay. Well, she comes
Edward Robinson 34:18
from a family of allergies. And so she had allergies to milk and eggs growing up. Like if milk touched her skin, she'd start throwing up. Oh, and her sister has like a peanut allergy. And our kids have allergies. Some of them have been they've outgrown some of them. But between like diabetes and allergies, our kids potentially hit like the Yeah. The genetics jackpot. Yeah, well,
Scott Benner 34:50
I think of it's funny. I don't know how science thinks of it. And I'm sure we could Google it and find out but i i I think of allergies as autoimmune Like you don't I mean, like it's your body, right having a ramped up response to something. So that's something else. Geez, yeah, forget college, you better start saving for medical insurance and stuff. Wait a minute. Like I, if I flick milk, get your wife and it hits her she vomits
Edward Robinson 35:22
Not anymore. Not anymore. But when she was very young, she did. Yeah. So, so there's one time when they they wanted what was it? They had to go somewhere. And they had to like change their flights or something. And they're like, sorry, you can't change your flights unless you've got a doctor and get like a refund unless you've got a doctor's note. They're like, Huh. And they gave her a little bit of milk and took her to the doctor so that they could get their flights changed and get a refund.
Scott Benner 35:57
Okay, hold on. So her family made her vomit, to get a doctor's note to get a refund on an airline ticket. Yeah, like I like this.
Edward Robinson 36:06
So it's not a for her. It's not a paid dangerous overreaction to just throw up and take Benadryl and then she'd be fine. It's not like a peanut allergy, where you have like respiratory issues and can't breathe.
Scott Benner 36:22
They explain this to her. Was she a co conspirator in this thing?
Edward Robinson 36:27
Um, maybe
Scott Benner 36:30
I don't know what the thing I don't know if I like the story better if they just are like, drink this thing in front of the doctor. Or if they were if they pulled her aside like a little like thug, and they were like, here's what we're gonna do.
Edward Robinson 36:42
The best part was that it was in Canada. So seeing the doctor is free too. So they didn't have to pay for that either.
Scott Benner 36:46
Oh, my goodness. Are you Canadian?
Edward Robinson 36:50
She is Canadian. He is your man. Her father is Canadian.
Scott Benner 36:53
Okay. Yeah. That's something where do you live? You don't live?
Edward Robinson 36:58
No, no, we live in Pennsylvania. Okay. outside of Philadelphia. Oh,
Scott Benner 37:03
we're very close to each other.
Edward Robinson 37:05
We are we are when I signed up for this. I was like, hi. I wonder if I should just go to Scott's house and you'd have a nice microphone. We could record it in person.
Scott Benner 37:12
I do have one right here. We could have done. I've never done I've only ever sat in a room with Arden and made a podcast. The only person I've ever been right in front of oh, we're done. We're gonna have to find out where you are? Because it's possible. Yeah, we're up the street from each other almost. Okay, so you've got diabetes, they start you on a pump? Not particularly well, a lot of lows. Are you going to the doctor with any regularity through college getting a one CS or anything like that?
Edward Robinson 37:41
No, the the pediatric type back office where I was going, they stopped writing the prescriptions in like, sophomore year or something. They're like, you haven't been here in two years. We can't keep writing new prescriptions. So then I went to see a doctor once or twice, so not very often.
Scott Benner 38:02
Right? So you were just you just went back to another doctor to get a different prescription? Wait, yeah. Or do you? I was gonna say when did you start seeing a doctor regularly, but maybe you don't.
Edward Robinson 38:15
So it was after college? I did. And for me, the promise was always in technology. I started on the Medtronic 670 G. Or maybe it's 630 G the one that the first one that had the automated mode. Okay. And so I went I went back I actually looked it up my A onesies were in like the sevens. And then with the 630 G, it brought my A onesies down to 6.1 6.2. So that was really amazing. For me, I found special ways to make it work. And I even found that in the settings, if you changed the insulin activity to be you could turn it down all the way to like two hours or something like that, which is obviously not how long insulin is in your body for but by doing that it made the algorithm more aggressive, because it would see that you have almost no insulin left on board and therefore it's going to give you more to bring your blood sugar down faster.
Scott Benner 39:25
So did that pump have a glucose monitor attached to it at that point? It did, right. Yeah,
Edward Robinson 39:30
so that's the one with the integrated glucose. There's one before that had a glucose monitor. But it wasn't very good. And it had this like harpoon to get it into you and it was super uncomfortable. And it was like probably half an hour to 45 minutes delayed in what your blood sugar actually was. And so I didn't really find it helpful at all. The endocrinologist wanted me to wear it. So I'd wear it for like a week before going to see them which in hindsight now I see how it could show you the trends and things like that to help you better adjust your basil, but were you focused in settings, but
Scott Benner 40:08
we're focused then on that it was such the data was so late from when it was measured that you're just like, well, how is this valuable to me, but you could have macro to it and seen? Seeing Right, exactly. Yeah, I understand they didn't even I don't even think back then the doctors probably knew enough about it to even give you that insight to you know, and this is when, what's the year for that? Do you know about?
Edward Robinson 40:33
So I started on the 6/3, the one with auto mode in 2016. Okay, so the previous version would have been 2012 to 2016. Gotcha. All right.
Scott Benner 40:47
It's so I have this problem all the time. I look at 2006 written in front of me when you're diagnosed, and it feels like it was I don't think of it as long ago. I don't know. It's just my age, like anything with a two in front of us like, yeah, that just happened. You know, and then we start telling the story, and I keep thinking it's it's 2022, you know? Yeah. Just, I mean, I don't know, there's something about those numbers. They mess with me. So you're doing this, but what you really like about it, and 39 minutes into this, Edward? It's why you're on the show. I mean, they're great at this are really bad at it. I don't know, I can't even tell the difference anymore. But but the technology part you said really attracted you to it. So when did you like you built your own algorithm? Right? Correct back. So yeah, tell me about it.
Edward Robinson 41:38
So yeah, so I was on the 630 G. And actually before being on the 630 G, the prior one with like the harpoon CGM, that wasn't very accurate. I, I found online somebody who had managed to kind of hack into the pump and extract the data. And so I worked with him and was actually able to decode the data for the CGM and load the CGM data onto a computer. And so I initially tried to create my own closed loop system. Using that, and I did it like on a laptop computer, and then I was going to put it onto like a small Raspberry Pi computer that could fit in my pocket. But between like that computer and a battery for that computer, and the pump and the transmitter to communicate with the pump, I would have to carry like a fanny pack around. And I was like, Yeah, I'm not gonna do this.
Scott Benner 42:43
Even good health,
Edward Robinson 42:44
I'll just wait, I'll just wait for Medtronic to release the 630 G and use that right. But after using it, I kind of got frustrated with it. Because it being the first one, it was very conservative. And it would bring your blood sugar down to like 150 and then slowly bring it down to like 120 but it wouldn't go. It would try to keep you above 120 all the time, and I want to start getting better control. And so when I was done with that I was looking around to see what to switch to next. And that was when I came across the loop community and the Android APS app and started using that and since then, so when I started using that my a one C dropped from
Scott Benner 43:45
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Edward Robinson 46:18
6.1 to 5.6, right, which was really amazing for me. But the best part was really the alerts and alarms. So for me, I'm a very heavy sleeper. And I would like the alarms would be going off on my pump. And it would be beeping away and I'd be sleeping through it. And my wife would kick me because it was disturbing her. And I would wake up in like a half, half asleep and I would just sort of dismiss the alarm go back to sleep. And 20 minutes later she'd kick me again. And I'd wake up and dismiss it and go back to sleep. And sometimes, and then eventually I would get up and yeah, have some sugar or things like that. But in my like, half asleep state I would sometimes do the wrong thing. So there are even times when I would give myself insulin when I was low. And my wife would look at me and she'd be like, What on earth are you doing? You just gave yourself insulin and you have low blood sugar. And like, after like a few minutes of talking to me, I would then be like really cognizant and
Scott Benner 47:26
having a meal, I need to
Edward Robinson 47:30
realize that I would need to go and chug a bunch of orange juice because I just given myself three units of insulin right when I already had low blood sugar.
Scott Benner 47:37
You know, there's a story floating around on the internet right now of a gentleman that just did that and killed himself. So it's such a crazy tightrope act, you know?
Edward Robinson 47:49
Yeah, it's so it's like Android APS, I love it because I set up alerts were ill send off an alarm and the alarm will go off every five minutes. If my blood sugar is dropping below, below 75 Or if it's dropping below 80 and dropping quickly at night. And so the the first one I usually just dismiss and go back to sleep, but by the third or fourth alarm, I've woken up and had something to eat and and then that saves me a lot from having nighttime lows. I have fewer nighttime lows, but they still happen occasionally.
Scott Benner 48:27
You keep stuff by your bedside. Yeah, looks like a little Kimmy. It's sort of a Wawa, I guess. Finally I can say yeah,
Edward Robinson 48:35
and then sometimes I come down to the kitchen in the morning and I've just like eaten everything. There'll be like candy wrappers and gummy wrappers all over the place and my blood sugar will still be coming down from like, 200 I'll be like, Oh, God. That was horrible. I
Scott Benner 48:50
overdid it. Yeah. What's that feel like in the morning after you've been through that? Is it a? Like I know people say like lows overnight, make them feel hungover. What a highs overnight. Make you feel like?
Edward Robinson 49:03
Yeah, I think it's kind of similar. I feel like dehydrated and hungover. And then having young kids there's usually one of the kids up at night at least once during the night. So then you just feel even more tired, right?
Scott Benner 49:16
Do you ever feel achy? Is that ever a thing that happens after highs just body aches or
Edward Robinson 49:22
so I've started to notice that sometimes my like tendons and stuff hurt a little bit, or they're not hurt, but they're just like more sensitive. And I can feel that, like in my hands or my ankles. They're like tighter. And stuff, especially when I have high blood sugar or extended high blood sugars.
Scott Benner 49:48
It's interesting because Arden's ribs get sore sometimes. And, you know, lace cartilage and connective tissue and stuff like that. It's interesting. Wow. Oh, okay, so you built is is that? Um, Dana Lewis? Who, who I had on the show years ago about Android APS like, is that a name you recognize?
Edward Robinson 50:10
Yes, she's one of the contributors. And there are a bunch of other contributors to Android APS as well. A lot of them are abroad.
Scott Benner 50:22
Okay, what made you go Android? It was available prior to loop. Right. Android was first Android. APS was before loop. Am I right?
Edward Robinson 50:30
I don't know which one was first one, either.
Scott Benner 50:33
You're just an Android person.
Edward Robinson 50:36
But yeah, just an Android person. Yeah. So I run with that. And so then, for that, it's, it's really interesting, it's got this really cool feature where when you start using it, it doesn't unlock all the features until you've gone through certain milestones. So it starts you out in manual mode. And you have to do that for like, a couple of weeks. And you need to answer some like, kind of test questions to make sure that you're, that you understand how it's working. And then it will do a mode where it will prompt you whenever it wants to change your Basal rate. And you do that for a few weeks and learn how that works. And then it starts to do that automatically. And then a few weeks after that, you can learn how to use the, what they call small micro boluses, which is basically where I'll give you bonuses rather than adjusting your Basal rate.
Scott Benner 51:35
I think that's, by the way, I think that's brilliant. If you listen to the show, I you've heard that I've advocated it to companies all the time, and no one seems Yeah, no one seems to listen to me. But for all different kinds of applications, I keep saying to them, like why not have a beginner an intermediate and a an expert level that you can unlock by? I mean, that's a great way even having your doctor sign off on you sliding up some things. Like imagine if you could, I mean, you know, right now what only pod fives target is one tend to control like US targets 112 and a half, like what if you could unlock a blower target or something like that?
Edward Robinson 52:16
Yeah. And you can even do even more stuff. Like, if you have lows, or if you have an extreme low, then you know, it's going to kick you out of that lower target for 24 hours to make sure that you don't get another extreme low. Things like that. Some of it is like, you know, the first couple of hours before any of the Dexcom. Sometimes it can trend lower than it really is like it says it's 46. But you test your blood sugar and your 86. But eventually, it sort of catches up, which some of that could be frustrating. But I think there's so many things that you can do. And there's tons of stuff like that built into Android APS, which I really love.
Scott Benner 52:55
I never know how to answer people's questions, because inevitably, someone says on these automated systems. What if my CGM is way off? What do I do? And I don't know how to say like, I don't know. It's never just not usually an issue. And, and when it is like you just like Arden switch to CGM day and a half ago. And for the first 24 hours, it was reading lower than she was. But her blood sugar's were higher. So she had like a like an impact from from hormones. So she was in this more like 170 range. And then I don't I don't know how to put this other than she was too steady, too high for too long. And it made me think, Why is her blood sugar not coming down with the amount of insulin we gave her? Oh, her blood sugar must actually be higher than this says. And there's something about that collection of circumstances that make me go test your blood sugar, you're higher than this says you are. And then as soon as I prove that that's correct, then you can make a large enough Bolus to actually impact it, and then boom, you're okay. But yeah, I don't know how you explain that to somebody on day one, you know?
Edward Robinson 54:05
Yeah, yeah. Like some usually when I first start the sensors, I'll just stay in manual mode, and just let my regular Basal rate run until I know that the sensor is actually working effectively. Sometimes I put it on it works effectively, immediately. Sometimes I'll do the pre soaking where you put it on, and you stick in like an old dead transmitter and then swap the transmitter in. So then it's been in underneath your skin for 12 or 24 hours before it's actually being used. Yeah.
Scott Benner 54:38
You get more accuracy from it right away. What right what pumps do does Android APS support?
Edward Robinson 54:46
So Android APS supports a bunch of pumps. Some like European pumps, and I think even like some from South Korea, as well as Medtronic, and I Omni pod, the original Omni pod as well as Omni pod dash, and I'm using Omni pod dash, which is really fantastic. Because there's nothing to carry around other than your phone which, yeah, yeah, like most people these days, I'm glued to my phone anyway. Right? My, my, it's really nice to not have anything to carry around.
Scott Benner 55:19
It's my expectation that that's the system we're going to put on. When as soon as loop is ready, there's a loop, I think loops, Badaling on the pod dash right now. And it's, I think it's very close to being done. So
Edward Robinson 55:34
yeah, I'm just, it's really great. So then, so then after doing that, for a while I, I did some contributions to it. So I tested that the I was one of the early testers for the dash capability. And then I was one of the early testers for this new algorithm that people have been working on in the Android APS community, that's called dynamic ISF, where it looks at your total daily dose from the last seven days, the last day, the last, like four hours and the last four hours before that, in order to estimate what your insulin sensitivity should be. Which is pretty cool. And there's actually some really cool science behind it. Where, which is why a lot of the pump manufacturers use it. Where if you've given yourself more insulin, over the last few days, or whatever you have, chemically within your cells, like more resistance built up. I don't know exactly how the chem chemistry works. But it's kind of like people say, when you drink more, you're
Scott Benner 56:50
gonna get drunk as fast it takes
Edward Robinson 56:52
Yeah, exactly. I thought that's a kind of similar concept with insulin, right? Which is pretty cool. So I tested out that and over the last four to six months, I've actually taken my experiences from work of working on artificial Mattel, artificial intelligence and machine learning. And built my own algorithm that uses AI and ML to build a model. And it uses a whole bunch of data, so uses those total daily dose, insulin factors, it uses the time of day, it uses activity tracked from my watching from so I wear a smartwatch, that tracks the number of steps that I take. And from the phone, and I'm actually working on incorporating heart rate monitoring. So from the watch, it monitors my heart rate and sends that to my phone. So I can include that in the algorithm as well. Well, that's as easy as
Scott Benner 57:54
well, let's stop for there for a second. So having just a step tracker on, then that allows a sort of like not unknowable variable, variable, but something that it's hard to remember to. I mean, you know, when you're, when you're making, when you're making manual decisions about your insulin, it's hard to think, oh, I walked around more today than I did yesterday, I'll cut this back, or maybe my insulin sensitivity should be a little weak or something like that. But you're saying, Yeah, you're saying that the algorithm would be able to take that into account?
Edward Robinson 58:28
So it does, yeah. So basically, what you do is you feed it, instead of writing out for machine learning, instead of writing out an algorithm, you give it a bunch of data, and you give it the answers. So you say, you know, my blood sugar went up half an hour later, I should have done more insulin half an hour earlier. And you give it all the factors and then it will figure out what the algorithm should be specifically for you. So it's really amazing. And it's just a total change in perception and way of thinking about it.
Scott Benner 59:03
Well, I definitely see the the retail space is moving that way because Omnipod five is is you know, there they won't even tell you what it's doing. So you know, it's like it's learning and I'm like okay, what does that mean it and and if you ask them directly there's there's no hiding it. They'll say this is proprietary information. And in so my expectation is I I've always thought that like I was like, well, if they're working on it, like the DIY community has got to be doing it as well. I just don't have a real in with Android APS to to hear the conversations. But yeah,
Edward Robinson 59:43
so this is something that that I've been working on independently. I've worked with a couple of other people. But it's still kind of early, and then my thought was to then find other people who are interested in experimenting with it. and help roll it out to more people and then eventually make it easy and accessible for everybody in the Android API space. There is actually a French company called Diablo loop. I don't know if I'm pronouncing it correctly. But they actually use AI and ML for their algorithm on your, which is pretty cool. It's
Scott Benner 1:00:23
exciting, actually is what it is. Yeah, yeah. Because but it's I guess, and it's, so you're you, are you using it right now? For yourself? You are? Where's it holding your
Edward Robinson 1:00:37
server right now my blood sugar is 129. It the target is 90. And it can keep it pretty stable there. But the so it's pretty cool. So it uses what else does it use? It uses the insulin on board, the the amount of carbs that I've eaten, I've recently been working on adding in the type of carbohydrates. So recording. Yeah, have I eaten pizza or salad, or, you know, orange juice, and then being able to incorporate that into the algorithm, because the algorithm should be able to learn that, hey, you ate pizza four hours ago, I'm gonna need to increase your insulin in order to account for the fat price that's going to come later on. And things like that. And even like specific types of pizza, have you eaten pizza from Domino's? Or have you eaten homemade pizza, and be able to factor those things in because it can basically see, you know, in the past nine out of 10 times when you've had Domino's Pizza, you've had arise for hours later. But when you've had homemade pizza, nine out of 10 times you've had arrived two hours later, because there's less oil and stuff
Scott Benner 1:01:56
like yeah, it might be less significant as well. Because I mean, right we make we do it here and we that's exactly what we see to the crust is thinner. I'm not dousing it in oil, there's not a ton of salt on it, like you know, it's there's not as it's not covered in cheese, there's cheese here in there. That's um, but that's exciting, isn't it? Well, we gotta get you help them. And we're we got to keep you moving. And your wife needs to be nice, no more kicking you at night, you need to be treated better. What's the sort of is the idea of like, Do you really think you can get it to a place where you'd be comfortable sharing it with other people like that?
Edward Robinson 1:02:35
Yeah, definitely. So then, so then it. So I take all the data. And then I train and build a model on my computer. And then I load that model onto the phone, and then use that model. I built in a bunch of safety requirements. As well, like if my blood sugar's dropping, it's going to be restricted and how much it can give me. You can put in restrictions around how much insulin it can give at any, for each micro Bolus. There's thresholds around how much it can give in total, like how much insulin you can have on boarded anytime. So there's a bunch of like safety around it. But all of those safety requirements are built around what I need for safety, not necessarily around what any person would diabetes needs for safety. You know, I'm pretty, relatively easy. I'm not a young child. I don't go to school, I work from home. I carry glucose tablets with me. Just in my pocket. I've got a little thing and I carry two glucose tablets with me all the time. Do you remember safety isn't really too bad for for me, but it shouldn't be that hard to make it safe for other people as well.
Scott Benner 1:03:59
That's what I was wondering is like, Can you can you imagine a world where the thing you're working on could be that what's How do I want to put this where it can be where it can do the job that is doing for you, but be generic enough that it could just be a retail item?
Edward Robinson 1:04:21
Yeah, so I think that this is going to be that the way that it will be for pump manufacturers, I think that they'll probably have another couple of iterations of doing it manually, like writing the algorithms manually, but then eventually, over the next maybe five or 10 years out, it will be using machine learning. And actually, I've you know stocked Omnipod pod and Dexcom online and they actually hire a lot of like data scientists and machine learning people. So they're using a lot of this but then they're translated and sort of what they're learning and what they're seeing in the data into still handwritten algorithms that then use inputs, like, I know that Omni pod uses, like total daily dose of insulin in their algorithm. And they probably use, like, I know, they use total daily dose from last three days, they probably use it from the last day in the last few hours or things like that, to figure out how much insulin to give you, but they don't factor in things like, you know, exercise, hormones, stress, food, types of food, things like that, which you can really get, and a machine learning algorithm can do and use for figuring out how much insulin to give people
Scott Benner 1:05:47
ever do this for me, tell me something that's that exists in the world today that people would be aware of that is employing machine learning.
Edward Robinson 1:05:59
Oh, Tesla cars, that's one of the simplest ones. So like, you know, Tesla's got their autopilot, and self driving car features. So that's all around machine learning. So they take in basically tons and tons of video data. And then the answer is, you've got to stay on the road. And times when the car drove outside the road, from the audit from the AI and machine learning system, but the person steered back into the road. Those are areas where you need to adjust the machine learning algorithm and provide it more data and say you should have turned right, when you tried to turn left to stay in the road. And, and therefore learn from this experience and build that back into the model.
Scott Benner 1:06:44
So in there, in that example, and I don't know why I know this, but I know that Tesla had to actually build their own computers to do that process, because they couldn't buy powerful enough computers to do it. Right. Yeah. And they're getting data from every I guess every car that checks off. Yeah, you can have my you know, you can have my cars data. And right, so So these computers are just running these simulations over and over. And then from what it sees, the computer says, Alright, well, line whatever in the code should be this instead of this, because, or what I know, I'm oversimplifying greatly, but it's learning and making adjustments to the, to the software that's onboard in the cars.
Edward Robinson 1:07:32
Yeah. So like, another way to think about it is. So when you write a traditional program, you say, if your blood sugar is high, if your blood sugar is x, then you need to bring it down. 50 points, right. So for 50 points, if your total daily dose was 100, then your insulin sensitivity is going to be 50. So you need one unit to bring you down 50 points, we're gonna give you one unit, right? So you basically write all that out to say if this than that, and if something else, then do something else. And you write out that logic by hand. But the machine learning basically figures out what that logic should be. So you can actually have a generate out this machine learning algorithm approach called Random Forests, where it will write out those sort of if then statements for you, and it builds kind of like a little tree that you could imagine that at the base, you say, is your blood sugar high or low? Okay? If it's high, then do this or that. And if it's low, then do X or Y. And l build out like hundreds of these trees, and then each tree will make a prediction of what it thinks it should do. And then it will take an average to figure out how much insulin to give you.
Scott Benner 1:08:53
Okay, so it could in that scenario, it could say, Listen, normally, I need we want to move 50 points, that's a unit, but I see that you've walked more today than normal. So we're going to use point 100.8 instead, something like that, or, or over the last 24 hours, we've been using 30% more insulin than we expect to so I'm gonna give you a 1.3 in this situation. Yeah,
Edward Robinson 1:09:19
yeah. So then, one way to do it,
Scott Benner 1:09:23
you understand? That puts, as I said, that puts me out of business. That's, that's for sure.
Edward Robinson 1:09:31
So I've been using an algorithm that it's called neural networks. And so it's kind of similar, but think of it more around probabilities. So you know, when you're high, you probably need one unit nine out of 10 times, but you've exercised so when you've exercised, nine out of 10 times you need half of the amount of insulin. But I can also see that you've eaten Oops, 60 grams of carbs. So when you've eaten 60 grams of carbs usually need, you know, a little bit more. And so then it adds all those pieces up to then figure out how much insulin to give you,
Scott Benner 1:10:10
right? It looks at the carbs, then it looks at the activity. And here's your number. And then this happens. In a blink of an eye, like you don't notice it happening, so yeah,
Edward Robinson 1:10:24
yeah, so it makes predictions every five minutes when it gets the reading from the Dexcom. And then it takes in all those factors, and then calculates what it should give you. So right now, let's see. For example, it says, so this is my, my current blood sugar is 136. And it's going up plus three. And so it says, the AI model predicted a small micro Bolus of point 207 units. And then it goes in and factors in a bunch of safety requirements. And then it rounds it to point 05. So it's gonna give me point two units of insulin. Okay. And so it did that.
Scott Benner 1:11:12
That just happens automatically. It's not done through basil. It's done in an auto Bolus.
Edward Robinson 1:11:17
Yeah. So then every, everything's done through an auto Bolus. Yeah. And and so then it sends the communication with the pump, and then gives me the amount of insulin that it that it should do.
Scott Benner 1:11:29
Yeah, I'll tell you for Arden loop made a big leap for her when we left, the version that was just using basil to try to stop and it moved to the auto Bolus version that was a was a big deal for her. There are still some times very infrequently, but it can happen, where if she has a low, and she puts in some carbs to fix it, but uses too many carbs and then hits her threshold again, it boluses and you're like, No, please don't Bolus here. You don't I mean, and then and then she's low again, 30 minutes later. And then yeah, I've showed it to her, I'm like, you just you can't, you can't over treat it. Because you're also not telling it you took in the carbs. And that's weird. So
Edward Robinson 1:12:15
there's some cool things that you can do. I used to run into that a lot. And so with Android APS, you can set up automations. And so one of them that I had set up was anytime that I went low, I would set a temporary target of 130 for the following hour, in order to avoid having a second low by overcorrecting because you eat fast acting carbs, and it thinks your blood sugar is going to shoot up to 200. But then the carbs are gone. And then there's too much insulin right on and then it crashes down again. And you got sort of a yo yoing effect. So
Scott Benner 1:12:47
you just did a temporary target that was higher.
Edward Robinson 1:12:51
Right, right to say, you know, let's avoid doing a second low, which then I'm going to treat and over treat. Let's just keep it steady for a little bit, and then bring it down slower.
Scott Benner 1:13:01
You know, the woman I spoke to yesterday, who I told you a 72 She's looping, which I'm like, just I thought was terrific. And she said when she goes and does things like meets new people, she gets a little adrenaline. And she's like, I don't like the Bolus for instead, I set my target lower. So the Yeah, so then the algorithms a little more aggressive, not a ton aggressive. And then the bump she gets wasn't as you know, isn't as as significant. And she doesn't end up low later.
Edward Robinson 1:13:31
It's really Yeah, the other thing that Android APS can do, which is really cool, is that it can see based on how many carbs you put in and how much it thinks it's seen of those carbs. It can say, you know, you're likely to go low in the next 45 minutes, and you should eat, you know, 15 carbs, or 10 carbs are eight carbs, which then really helps with overcorrecting, and it can see it far enough out that you can have it to then totally avoid the low. That's which is really nice.
Scott Benner 1:14:06
It pops up and tells you like you should have eight carbs. Yeah.
Edward Robinson 1:14:10
Right. Right, exactly. And then the other thing that I really like is so I use another app called X strip, which works with Android APS, but it allows you a lot finer control over the the alerts and alarms. And so I always find it funny when I hear you ask on the podcast, what people have their alarm set to because what you can do is you can set different alarms. So at like 130 I just get like a nudge that's like, Hey, your blood sugar is going up a little bit. At 160 It's a little bit more of a poke. And then at like 190 My phone starts vibrating like crazy. It's like hey, your blood sugar is really going up. You should do something about this and and then also when the alert goes it starts with vibrate. But if you ignore the vibrate for a few minutes, then it starts with like a small chime. And then it gets louder and louder and louder for the alert to make sure that you actually acknowledge it. Which is really cool.
Scott Benner 1:15:15
Is this a job interview? Or did you think I'm gonna come on this podcast, I can get a job with one of these. Somebody over here, because they're going to hear it. At this point, I think every diabetes company listens to the podcast. So I feel like I feel like you're on an extended job interview right now you don't even know. Like, why? So I'm fascinated by this part of it. And maybe you have insight in this. And maybe I'll just ramble and you'll say, I don't know, Scott. But when all this is possible, right now. I don't understand why. You know what I mean? Like, I was in a meeting with somebody one time, and I said, like, I don't know who Ivan is, but find him and hire him. You don't mean and? And, you know, I don't know who Edward is. But is there a reason somebody hasn't run in and gotten him and put them in a room and said here, do the best you can? Let's see what you come up with. You know, like, I don't, I don't know why. I mean, I guess big companies have more to consider than I'm, then I'm absorbing right through the FDA and all this other stuff. But it's just I mean, what you're talking about sounds like the future, but you're sitting in front of me using it. So
Edward Robinson 1:16:22
yeah, yeah. And a lot of it is just like common sense. Like, it gives you an alert, if it thinks you're gonna go low within the next 15 minutes. So then, when that comes up, I just take, you know, two glucose tablets. And then I avoid, though entirely, rather than getting the alert when you go low. And from what I've listened to of the interviews that you and other people have done with, like Kevin Sayer from Dexcom. When he answers the questions around the alerts in the apps, it does sound like Dexcom is going to build some of those things into the next version of the CGM. And I really do hope that they build in a lot of these types of alerts because it just makes it so much easier. Rather than getting the Dexcom alert, that's like, incredibly loud, when your blood sugar's 130. Just getting a little nudge is so much more convenient and effective.
Scott Benner 1:17:21
Yeah, it also doesn't give you that like, feel anxiety. Yeah, she's this again. And then you look down, you're like, Oh, I'm only 130. And you know, it's not right, I take your point, I just I'm not even pointing out anybody specific. I mean, pumps, pump manufacturers, CGM, or whoever. It just, it's all right here. I don't know what you don't I mean, so
Edward Robinson 1:17:44
we don't Yeah, and the funny part is that the code is all written, where it's, it's open source, I mean, you can just take the source code and just have that be the Dexcom. App, you don't have to do anything, you can just take it and use it.
Scott Benner 1:17:58
Right. Even that part of the world, I don't understand I for the life of me don't understand, like open source. Like I think it's wonderful. But like, my brain doesn't understand why people do it. Because it doesn't, it doesn't lead to I guess it does. It just leads to it. So slowly, getting to mean like, like, Wouldn't it be better if you just sat down and wrote out your thing and incorporated it and made it? And then? Or does that like the as soon as you get into regulatory stuff, it just it stops that I
Edward Robinson 1:18:29
get? I think yeah, because I think that the regulatory stuff, and then also making it safe and effective for everybody. So like, I can build this algorithm and test it on myself. But if I'm doing it in a company, and you know, I get low blood sugar, I just treat it whatever, I don't, I don't care. But if a company gives somebody low blood sugar, then it's like, well, what are you guys doing? This is terrible, right? And if it falls apart, and somebody dies, you know, then the company is dead. It's over for them. I completely understand they have to be extra safe and cautious when working on all these things.
Scott Benner 1:19:09
I'm being to people here. I'm being like, 10 year old man who's like, Just do it. And you know, the rest of me is like, No, I know why this isn't happening. But it's just it's, it's frustrating. You know, it's and it's, and yet, in the diabetes space over the last eight years, things have moved forward. Incredibly dramatically. Yeah, you know, just really it's
Edward Robinson 1:19:31
amazing. Having lived through like multiple daily injections and eating a certain amount of carbs at a certain time to now having this like incredible algorithm. Yeah. Which so the other part that's really cool about the algorithm is that there are no settings in it. There's there's no insulin sensitivity factor. There's no Basal rate. There's no Are count, there's no car sensitivity factor, it just figures it all out for you. And all I do is I put in the amount of carbs that I'm eating 20 minutes before, I mean, you still have to like, put it in before so it can Pre-Bolus. But 20 minutes or half an hour before I eat, I put in what I'm eating, and the amount of carbs and then it slowly builds up like a wave of insulin as a Pre-Bolus, which is really nice. Yeah. And then you also get fewer like crashes because it's slowly building up the insulin through multiple doses, rather than just like one dose that then so I use fiasco and I would find that if I Pre-Bolus. With the right amount of insulin, it would all hit within like a 15 minute period, half an hour, 45 minutes later. But the food absorbs over a longer period of time. So being able to have it, slowly build up the wave of insulin makes it a lot more effective.
Scott Benner 1:21:05
Arden had a five guys the other day, and we went and picked it up. And we left there. I was like, I think I think I said something like Bolus 20 carbs now. And then we drove home. And then we did 40 More like I'm telling you this meal is right. It's got to be 100 at least carbs. And then we did a little more and did exactly what you just said, like we created. You know, in my you it sounds like you do listen to the podcasts like in my mind, like I'm creating like different timelines of Bolus is different. You know, they live on their own plane of existence for me, this one's going to peak here, this is going to peak here, this is going to peak here. And that should lay over top of this fat and protein that she's going to see from this food pretty well. That I'll tell you that Bolus went so well that when it was over, I was stunned by it. Like Like, like, like four hours later, I looked at her graph, and I was like, huh, wow. Like, even I was like, okay, yeah, that's crazy that that works. And then the next day. She has a waffle in the morning. And we did a little bit. And then I said I was cooking and I said, Hey, Bolus 30 more. And then I don't know, 15 minutes later, she sat down, and I said, Okay, we're gonna do the rest of the insolence she goes, we haven't done any of it yet. Just the first bit. And I was like, No, I said, Do 30 more. And she goes, I didn't do that. And just not hearing me say that. kept her blood sugar 180 for like, four hours. I appreciate the waffle. Just just missing it in that spot. You know what I mean? Was it's really something. But yeah, obviously, I, I want this because that I mean, what you're describing does what I do. And I think there's other things in the world, I would do, Edward if I didn't have to think about this. So sounds pretty cool.
Edward Robinson 1:22:50
Yeah, yeah. And it's amazing. So it really, machine learning works well, when you have a lot of really precise data. And there's, there's just so much precise data for diabetes, like the amount of insulin that a pump gives you. It's just mind blowing how precise it is, I think like, point 05 units that the Omni pod can give you. I think you if you take like a drop of water, and slice it up into like 1000 pieces that that's the size of one of those bonuses. So it's like incredibly precise, it's just mind blowing. And then, you know, people are pretty good at counting carbs. So that's pretty accurate. Be able to track your exercise and activity and heart rate and be able to incorporate that one of the things that I'm really excited for potentially doing this with other people is to be able to factor in things like location. So you've got the GPS on your phone, it knows if you're at school, if you're at work if you're at home. I mean, I work from home, so not really that important for me. But you know, being able to factor in like hormones and menstrual cycle, you can easily just put into the app, like hey, today's the first day of the menstrual menstrual cycle, and then from that it can figure out you know, throughout the month, how much more or less sensitive it needs to be based on that.
Scott Benner 1:24:19
Yeah, I'll tell you that's what we just went through that last week where through the event, Arden didn't need very much insulin. And then when the event ended for like four days her needs were significant. And Rachel and I, we track it in a in a period tracker, but that's just enough for you to go Okay, looks like the four days after need more edits. You know, for people who think like all this stuff is just magic like Arden's insulin sensitivity and needed to be changed for Bezos needs to be changed, like a lot needed to be changed in those four days and then when it ends Edward, it's fascinating. Like, I watched it end, at four o'clock in the morning on the fourth day, it was just it. It was like someone walked in a room and was like, Oh, who left this switch on? Click, she does not need these settings any longer. And boom, we had put them all back. Stop. Hello. And then Yep, good, was fascinating.
Edward Robinson 1:25:21
And that was that was one of my frustrations with with the other Android APS is that algorithms is that on, on some days, I skipped breakfast and do intermittent fasting, some days, I'll even skip skip lunch as well. And then you have to go into it. And you have to say, okay, reduce the profile settings, and then potentially reduce them further, if you skip lunch as well. And needing to do all that I just found to be annoying, and it should just be able to figure it out for you.
Scott Benner 1:25:52
Right. And the override for loop is I know we're jumping back and forth between systems. But the overriding loop works for her for lower days. But for higher days, it's just not enough. Like you can't like you can go 150% On the override, and it still doesn't do it. And then there's a moment when you get too high, and you're just going to cause a low. And then those are the moments when you're just like, Well, I'm just gonna, I'm just going to open the loop and run it like a regular pump, then. And then you inevitably forget that the loop is open. And you're and you're reminded three o'clock in the morning and you're like, Why is her blood sugar low? Oh, we didn't put the algorithm back on. You know, like that kind of stuff. Those things being for Android
Edward Robinson 1:26:32
APS, you can disable it for a time period, which is really awesome. You can just say, pause it for an hour or pause it for four hours. Yeah. So then you don't drop it into that?
Scott Benner 1:26:41
No, it is really well listen, it's amazing. And here's the here's the scary part to me. That it's it's all based on whether people like you find out about it, and are interested enough to put effort into it. Because this is this could literally be like a softball league, where one day we all just don't show up for practice. And then the team has gone. You know what I mean? Like like that could happen. Like I it's so far hasn't, but it could it like what happens if there could you know what I mean? Like, but
Edward Robinson 1:27:17
I mean, I think it's, I could see that happening if there is you know, but I think because people still have diabetes, it's still going to happen.
Scott Benner 1:27:26
Yeah, I hope so. I mean, I'm I'm like what you're saying is, is exciting to me that you're interested in it. Yeah, that you're doing it is fantastic that you think that other that the companies are looking at that stuff as well, is very cool. And I'll tell you why even more important. And not just because I spoke to her yesterday, but 72 year old woman using a loop. And one of the questions I had to ask her was, Are you worried about the moment when this stops making sense to you? Or that you can't keep track of how this technology works? And if it was the machine learning technology would help you later into life? Because you wouldn't need to know much of anything, you know? Yeah, like, I
Edward Robinson 1:28:10
don't know. I don't know at all how it works. I mean, I know like, you know, how it all works. But the idea is that the algorithm, it it's multiplying so many numbers that you just can't possibly read through it and understand how it works. And but the magic is that you can see that it's effective, because it's saying at the end of the algorithm, it says how accurate it is. So like right now, it says that it's off by like point 05, on average point 05 units on average. Initially, when I started the algorithm is off by like, point eight or things like that. But I've seen as I've developed further that it's gotten more and more accurate, even though I can't sort of crack it open and tell you how the algorithm really works. You can build similar ones that kind of show you that like tree structure that are readable and understandable. Which is pretty cool.
Scott Benner 1:29:09
But but that's not what most people need. What most people this is where I actually I firmly believe that Omnipod five is on to something, they're just like, look, we don't think you want to know this. You mean like we want this to work, right? You and without you having to understand what all these things are? And that's what I'm saying is they absolutely either you're a person who gets it. I mean, that's one of the reasons why looping and all this hasn't blown up more than it has like, it's exciting that, I don't know, 10,000 people have downloaded the loop app or whatever the number is, but there's like 1.8 million people with type one diabetes. So basically, none of them have loop. You know, statistically speaking, what keeps it from blowing up is that you have to understand all this stuff and that most people either aren't going to have the ability or the time or the inclination. And so if you need it if you want it to really grow, it's going to need to, like, you know, steal the line from Steve Jobs, right? It's going to need to just work. And, you know, that's it.
Edward Robinson 1:30:09
Yeah. So that's actually what I want to do, eventually, when I make it so that other people can do it. And I've actually done a lot of this for myself as well, just to make it easier. But have it just like automatically it uploads your data to the cloud, the cloud trains a new algorithm. It says, Hey, this algorithm, is this much better? Do you want to accept it? Yes or no? And then you're on your way? Or even just have it automatically upload the algorithm if it is more effective,
Scott Benner 1:30:40
right? Is there? Is there a business way, maybe you haven't looked into it, but is there a business way where, where that could be set up, and someone could earn a living from it, without it being a legal entanglement.
Edward Robinson 1:31:02
Um, it's not easy. Because as soon as you start having people give you money for it, it's kind of like a service. And then if they run into any problems, you know, you've been providing this to them, and therefore you are, you're responsible, liable. Now, it's, but in the open source, it's just I'm providing I'm setting this information out into the world. And take it or leave it up to
Scott Benner 1:31:32
you, because someone needs to, I mean, this is what I figured out for making the podcast is somehow is completely different and exactly the same. If the podcast is helpful to you. It's because I can treat it like a like a business. Like, I can make sure that there's an episode there for you when you turn on your phone, and you expect it to be there. And the only way I can do that is because I can pay my bills and live my life while making it. And the only way and the way I found around, and I didn't want to charge people, because I not only do I not want to take money from people, I very badly don't want to take money from people. But I also know that the amount of people who would be willing to give money to it probably wouldn't be enough so that my wife wouldn't make me go get a job. Right? So like so. So I thought, all right, well, I'll take advertising, but you can't take advertising until you have numbers that are big enough to support advertising. So as much as this might just seem like a podcast to you. I've had to put a number of different structures in place, and will them into existence and make them popular enough to support the next step to get you to the content that would help you. And this is the same problem. Like you don't even Yeah,
Edward Robinson 1:32:44
I think I think with the open source community, it's like, I could have never done what I've done with the machine learning stuff, and building my own algorithm. If Android apps didn't exist on its own, previously, I wouldn't have had the time and the effort to build out all the foundational pieces to then build on top of it. So it's all like just building on top of what other people have done. It my point. And that's I think the magic too.
Scott Benner 1:33:14
Yeah. And that's it is but the way to make it faster is if all those people could have drawn some sort of a salary from it and put their entire eight hours a day, like I'm sure I'm assuming this is something your hands go to bed, you know what I mean? Right,
Edward Robinson 1:33:27
so yeah, when when they go to bed, and they're not awake? Yeah, well wake up screaming, then
Scott Benner 1:33:32
think about it. Everyone's got to put his kids to bed, then he's got to look at his wife for the nod, the nods, not there. And then he's like, Alright, I guess I'll work on the injury. I want I want I wanted to get up in the morning at 8am with a cup of coffee in his hand working for eight hours, 10 hours on it. I want 510 20 people doing that. And then all the sudden, here we go. And what are we really talking? Yeah, you don't I mean? Like, how much money would you really have to generate every year to pay a small band of people to do that? It wouldn't be overwhelming. Somebody just needs. It's the situation where I don't I'm not calling anybody out. But I'm using him as an example. Like, I don't know how Helmsley doesn't hear this conversation and wrangle up 10 people and be like, here, look, how much do you make a year? Well, you work for us now. Go make this, go do this thing. I mean, they support companies when they do it. But then the minute you support the company, you get caught up in the you get caught up in the red tape. And then it's Yeah,
Edward Robinson 1:34:32
I think that there are potentially ways that they could get around it. Like if Omni pod just built the pods, and they just built the pump, but the pump and the pods, they're open to any algorithm, and then they just provide and then they work with people who build the open source algorithm. And they publish the algorithm for free and then it's easy for people to connect the dots. Then they they make their money Selling the pods, yeah. And then people use the pods because of the open source that they release. Right,
Scott Benner 1:35:04
right. And then that started to happen with tide pool as an example. But then tide pool seems like it got sucked right into the machine. And now, like, I it feels like it was two years ago where they're like, look, what we're gonna do when I'm like, it's two years later, my daughter's using three different versions a loop since then, you know, like, so it's the time that bothers me. And I knew, you know, there's gotta be a, there's gotta be a way to get around. That is all I'm saying. At least
Edward Robinson 1:35:32
Yeah. And that was kind of how, how I got here was that I thought, the 630 GE was going to come out, and it was going to be amazing. And then a few years later, they're going to have, you know, an algorithm that is just night and day, so much better. And so by the time I build something, you know, there's going to be something incredible by the time I do that, but 630 D was good. And it was really effective for me, but it's just a rate of innovation and releases just too slow. And that was how I then ended up building my own algorithm and stuff like that.
Scott Benner 1:36:11
And that, and even the idea that something might be coming could be holding back other people like you who are like, I could probably make an you know, an improvement to this. Anyway, I I'm not, listen, I'm grateful for all this stuff. It's amazing. You don't I mean, like it's without these companies. I remember what it was like, I want a lot of fun. So yeah.
Edward Robinson 1:36:34
And I've seen people's graphs on on Facebook and things from Omnipod. Five, and it, it really is fantastic. And yeah, for most people, that's maybe just good enough. And you know, it provides excellent control. And, you know, maybe that's good enough control that, you know, you're gonna run into the same long term health issues that other people do. Like, on average, people maybe get their knee replaced when there. Yeah, 75 or whatever. And if you have control through Omnipod, five, you're just as likely to get your knee replaced at 75 or things like that,
Scott Benner 1:37:16
which is good news, because it means you're alive at 75. And you need your knee replaced. Yeah, yeah. I listen, it's amazing. I love having these conversations is great. Is there anything? I mean, I'm out of my element here. So did I not bring up anything I should have?
Edward Robinson 1:37:34
Um
No, I don't think so.
Scott Benner 1:37:42
Nice. You have notes in front of you.
Edward Robinson 1:37:45
I do have some notes. I wrote down a few things. I even built an Excel chart of my agencies over the years.
Scott Benner 1:37:52
Well, what's not wasted? What have they been?
Edward Robinson 1:37:56
So I downloaded the data from from LabCorp. I, I wish I had it when I was diagnosed, but it only goes back to 2012. So it was in like, the sevens, the high sevens. And then in 2016, when I started on the 630, G, it dropped down below seven for the first time. And then it was still in the high sixes but then eventually got down to like the lower sixes. And then there's just a dramatic drop at the end. When I started using the Android APS,
Scott Benner 1:38:36
we're on to 5.6 5.6 is about where you sit.
Edward Robinson 1:38:40
Yeah. So that's where I am right now. I think that would. So that was before the last day once you that I had was before using the machine learning algorithm that I built. So I'm curious to see what it'll be with the machine learning algorithm.
Scott Benner 1:38:59
Do you have any insight through clarity or something like that where it might be?
Edward Robinson 1:39:04
So I think it's probably going to be very similar. I want it to be lower. And I think that I can kind of make it lower. Right now the big benefit of it is not having any settings and having it be more dynamic and less, less manual overrides and input.
Scott Benner 1:39:25
Well yeah, that sounds much better. Do you eat a certain kind of diet?
Edward Robinson 1:39:30
No. So with with young kids, sometimes, you know I have a pop tart or half a pop tart for breakfast, which I love. There's a great quote and one of your episodes where you like pop tarts are poison, which I think is very correct. Especially when it comes to diabetes. It just like shoots your blood sugar through the roof.
And then but in general, we eat pretty healthy. Lots of fat adjustables but eat pasta, I don't restrict myself in any way.
Some days, I do intermittent fasting for like the health benefits, there's some really amazing science out of like Harvard, and some other places around extending lifespan. And one of the effective ways to do it is to do intermittent fasting, which is really cool.
Scott Benner 1:40:28
Yeah, I haven't been like, precision careful about it recently, like this time to this time. But in general, I have a pretty short eating window in the course of every day. And I think it's a major, I can see a major benefit from it just on on how my body weight stays, you know, not necessarily eating, like Jenny. And if we're keeping that window, shorter stops me from gaining weight. If I expand the window, my body starts to hold on to weight. It's really interesting. And I do want to pay more attention to it. I, it's tough, because we're at a really rude time right now, Edward, where a lot of people have opinions about things. And you don't know if their opinions are rooted in any kind of, like, the only me like, there's, it's so funny, because I'm about to like, I guess what I'm gonna say it's gonna make it sound like I could be in that group, too. And I understandably, could be, but like, I have a podcast. So I know how to make my voice on the internet. And I know how how people can find it. A podcast has grown the way it has, and it's existed the way it has, I believe, because what people learned from it ended up being valuable, and they told somebody else. But I don't know if I look for intermittent fasting podcasts, I'll find 25 of them. I don't know what those people know, or what they don't know. And it's the same even with simple things like I want to do more content about just like vitamin supplementation. But how do you find somebody who knows what they're talking about? Who's not a crackpot? Or just trying to pimp their
Edward Robinson 1:42:10
How do you know that they're not correct? Exactly. And that's the challenge. Yeah. And
Scott Benner 1:42:14
when you talk about intermittent fasting, the same thing comes into my head that most that some people are going to hear that and go, Oh, yeah, sure. You know what I mean, or I'm sure that I'm sure that's the feeling people get when I had somebody tell me the other day, they stood up at an event, and they're like, who, who listens to the Juicebox? Podcast, there's a bunch of people there with type one diabetes, and I thought this was gonna be a story about how they all did. And it was not many of them, you know? And then, and so the, so the process starts, like expanding on why they think they should listen to the podcast. And he said that at the end, a guy came up to him and said, Amen, I'm not gonna listen to that, man. Just sounds like you're doing a sales pitch. And the guy's like, no, he's like, I believe in it. Like, you should try it. And so how do you you don't I mean, how do you make that leap? Anyway, there's no answer to that statement. It's just it's, we're in a time where anybody can express their opinions. And it's easy for other people to get to them. And how do you pick? Who's who, because I've had people come up to me, they're like, I know about supplements, you start talking to them? Like, I think you think that there are spaceships coming to get us? Like, so? I don't know. I don't know how to take you on vitamin D right now, you know. So, anyway,
Edward Robinson 1:43:23
yeah. So personally, I like finding stuff that's more like research based with and like, read, or even sometimes reading the research. But it takes a lot of time to do that. And then it's amazing how often, like research is just done terribly, terribly bad. There's this fantastic book about, about pregnancy, and it's called expecting better. And it goes into a lot of like, the deep dive deep dives into a lot of the research around pregnancy. And one of the fantastic things was they recommend, you know, not drinking when you're pregnant. And I'm not a medic, don't take this as medical advice. But the the book then talks about how in some of the studies, the people that they studied, were drinking, but the people who like admitted to drinking in the study also had a number of other really bad complications, like doing heroin or crack or things like that, that you probably would conflate the results. And so it's amazing how even like, research with the best intentions can still be done poorly. And just because you publish some paper doesn't mean that it's valuable. And so it's really hard to sift through that and find the right answer.
Scott Benner 1:44:44
Basically, think about during the height of COVID. When you couldn't, you couldn't make a turn on the internet without somebody telling you like just zinc and vitamin D. And I'm like, listen, there's no doubt I should probably have a certain level of zinc in my system and a certain level of vitamin D in my system, but they would say Like, that's all you need. And yeah, that COVID It just, you know, vitamin D heap your vitamin D up, you'll be fine. I'm like, how, what? And, yeah, can you prove that? You know, I heard it. And then that ends up being the problem is that someone says it, and then people start repeating it. And then before you know, it's a rule, and you're like, wait, what, like, did anybody look into this? And you know, it's, it's just very interesting. I'm not saying even that, you know, maybe thinking vitamin D did stop COVID? I have absolutely no idea. I just don't know how to believe any of it is my bigger problem. So, yeah, I want to ask you one last question before I let you go. And I have you wait too long, I apologize. It's still with the system you're using right now. You still have to Pre-Bolus your meals, right.
Edward Robinson 1:45:48
So I don't actually Bolus you but you still have to put in the car at least 20 minutes beforehand. And then it will it will Bolus on its own Yeah. Sometimes if it's like there's safety restrictions, if my blood sugar is dropping or below the target and things like that, it will be conservative when Bolus thing. And so I still will Pre-Bolus Then, because I know that even though it's dropping, the food is going to make it go up. And so then I still Pre-Bolus
Scott Benner 1:46:16
Yeah, but I just want people to understand that even when we're talking about something that sounds as futuristic as what you've talked about today, they still have a responsibility. There's still
Edward Robinson 1:46:27
Yeah, yeah, exactly. So the, the French company that I talked about, the CEO of that company has given a few interviews, and they have said that, you know, if you don't Pre-Bolus And if you don't even Bolus your meals, you can still get reasonable results. Like, it's just gonna take a while for the insulin to catch up with the food is the reality. But I mean, there's still things that any algorithm just can't predict,
Scott Benner 1:46:58
right? There was a company, I mean, I assume they're still working on it, but it feels like it's 10 years ago, now. I'm sure it wasn't that long. And they said they were gonna have an algorithm where you could just tell it, I'm having a large meal, a small meal, a medium sized meal. And yeah, I don't know, whatever came up with that.
Edward Robinson 1:47:16
So that's, that's interesting. That's one thing that I want to try and do is see if I just use purely the description of the meal, to see if that can be sufficient. Because usually, when I eat pizza, I eat about the same amount of pizza. And when I eat a bowl of cereal, it's roughly the same bowl of cereal. Yeah. So it should be sufficient. And then sort of the next mind blowing idea would be to take a picture of it. You just take pictures of your food. And the there already already are algorithms that can tag food and pictures. So you just take the tags out of the picture. And Google can already tell you if you're eating, if a picture contains a hamburger or a chair, or, you know, a salad. And so you could just use that to then predict how much insulin to give.
Scott Benner 1:48:12
I mean, pretty amazing. If one day you just held your phone up over your plate and got insulin for that'd be that'd be insane.
Edward Robinson 1:48:18
I think that there is an app that tries to estimate the number of carbs based on doing
Scott Benner 1:48:23
is because they tried to buy ads on the show one time and I was like, let me try the app. And then I tried it. And I was like, Thank You didn't exactly how I was hoping. But yeah, I
Edward Robinson 1:48:35
think if you did it like on a if you trained it on like a per person basis, because most people eat pretty similar meals most of the time, right? And like humans are creatures of habit. So you can learn those habits.
Scott Benner 1:48:49
Yeah. Well, that I believe and trust me. I don't know anything about science or machine learning. But I knew the say that years ago, and I think the first time I said it, the Jenny. She was like what now? And I'm like, people eat the same things. Right? And she's like, Yeah, I guess so. And I was like, yeah, it's not like you're like, you don't I mean, not like you haven't frog legs one day in a McDonald's cheeseburger the next day, you probably live in a certain existence, by the way, it was Ed Dimino that I was thinking of. And this is back in 2014. I think it's at Boston labs. I forget, but he was working on. I forget what he calls it even some sort of bionic pancreas was what the phrasing they were using back then. But it's one of those things. I have no idea where that is in the process. It's eight years later, and I haven't really heard much about it. But I think that he was the one who was saying, or maybe it was the other company. That's the other problem is that sometimes these people have ideas that they incorporate. And then suddenly, and I'm not saying this about anybody specific but then suddenly raising money to keep the company going He comes the company's job. You don't I mean, yeah, you get in that situation and
Edward Robinson 1:50:04
trying to roll it out just becomes So, so difficult. Yeah, yeah. i The other thing that I found, though, is that, so people are creatures of habit. But for me at least, we, we eat the same meals, but just not often enough where I've forgotten by the time we come back around to the same meal. So you know, we'll have pizza from this great pizza place near us, but we only eat it. I don't know, every two months or something like that. And I don't remember exactly what I gave myself two months ago. Sure. Yeah, but an algorithm can remember that and learn that for you.
Scott Benner 1:50:42
Right. And you can say, you're even saying that at some point in the world, it might be able to say, I know you're a Domino's right now. And yeah,
Edward Robinson 1:50:53
I mean, you can track your location on your phone, right within Domino's versus Pizza Hut versus school or whatever. And, and you can use that to, to predict how much insulin to give,
Scott Benner 1:51:06
hey, I want to give whoever on the pod hire to do this search engine optimization. I want to give them a big shout out because I Googled Ed Dimino insulin pump and I got a return back for Omni pod five at the top. So somebody's doing their job extra well over there. I could be
Edward Robinson 1:51:24
that or it could just be Google monitoring everything and put recommending ads for you pushing you to ads. Yeah. Because you've gone to Omnipod site.
Scott Benner 1:51:32
And here it is. He was calling his pump. I let from beta bionics i l e. T. Yeah. Interesting. delayed by the FDA. In mid to late 2021. This could be delayed by the FDA. It says, I don't know. Yeah. Anyway, listen, I am. I was drugged into the world of looping by a lovely woman named Gina who just wanted to hear more about it on the podcast, and I can't thank her enough. I think it's made a significant improvement in my daughter's life. And as to be perfectly honest, I don't see a world of we've used on the pod five, and it was absolutely terrific. But, you know, we went back to loop after after a few months. And we really understood I understood, I understand on the pod five forwards now. But yeah, you know,
Edward Robinson 1:52:24
do you still use an orange link?
Scott Benner 1:52:26
Yeah, but I heard there's a better one now. So
Edward Robinson 1:52:29
yeah, so that's what we're using dash though using on the dash, you don't have to carry that round anymore. So it's just carrying around your phone. And it's it's fantastic. So
Scott Benner 1:52:38
Edward, if you would do me a favor of keeping in mind that you and I are recording something that people won't hear for six months, so that I have to keep the timeline of my podcast intact and keep Yeah, keep this to yourself for the next six months. So your episode comes out. So aren't used on the pod five for a couple of months. It was exactly what I expected it to be. I learned how to use it. I understand how to use it. And she said to me, can I go back to loop? Because she didn't want to carry the controller for the only part five she loved having loop on her phone. Right? And yeah, it's a good, it's interesting, because it wasn't about the care to her. It was about the functionality, right? So what I did was because you have to carry the controller, yeah, she wanted to carry the controller, she didn't wanna have to carry an extra thing. And so we have listened. Everybody should be getting enough. I have enough arrows pods to last us for a little while. Okay. So when she went from arrows to on the pod five. And then we left on the pod five, I did not go back to Eris pods, I went back to dash pods. And I'm going to try so we're going to use up the arrows pods we have and then by that I think the dash version of loop will be ready and out of beta. And then I'm going to translate Yeah, I'm thinking around the holidays, that should probably happen. So she's gonna go off to college on loop. And we're actually sending her with the on the pod five stuff as her backup. Yeah, in case her algorithm crashes and somebody we can't do something about it from a distance because she's going away pretty far to school. But yeah, that that that's the next step is I think looping with Dash for us. I would imagine by the time someone hears this we're doing it is my expectation.
Edward Robinson 1:54:23
It's it's really great. Being able to use the dash without needing to carry around anything else.
Scott Benner 1:54:30
When we bring that when I bring this up to Jenny, she keeps bringing it up that she thinks that you can't change the impact time in the dash version yet of loop. I don't know you probably don't pay attention to loop. But in the you know what I mean? The ers version, you can say I think this meal is going to hit over three to five, six hours. And at the moment okay, I guess you can't do that and dash but I hope I'm hoping somebody adds that to it.
Edward Robinson 1:54:55
Interesting, I wouldn't have expected that to have any impact because you Like the pump, at least in Android APS, because it's poured so many pumps, that pump like integration is its own separate piece from all the rest of the algorithm stuff. So the algorithm should continue to work, no matter which pump you plug in to use.
Scott Benner 1:55:15
Yeah, I think specifically, what Jenny heard was that the dash version of the loop did not have that ability yet. And she was hoping that somebody would put it in. But it does, it does. It's a big deal, because you can, you can make a Bolus at three hours. And this thing's like alright, well, you're good. But you're looking at a blood sugar that's 170. If you just go in, that's one of the amazing things about loop that I missed with Omni pod five is that I could go back in and change the parameters of that Bolus from two hours ago and say, hey, you know what, this is actually hitting over four hours now. And boom, here's how much insulin I think you should put in for that. And you can't you can't edit your boluses and Omnipod. Five. So once you put them in there in that, that's one of the things I love about loop the most is being able to go back and edit the previous Bolus.
Edward Robinson 1:56:08
Yeah, I do think that for Omnipod, five, they, they will roll it out to more phones pretty quickly. I mean, so pretty quickly would be like, over the next six months to a year or something like that, that they're going to add more and more phones.
Scott Benner 1:56:26
There's also the last part of this is I want her to be on a retail system. I want it to get to the point where I'm like, Yeah, put that on it does these three things we needed to do for me. Yeah, for me, the truth is that Android APS loop, tandem control IQ, and on the pod five, these are not things that are competing with each other. They're not they're not apples to apples situations, like I think I think control IQ and on the pod five are similar. And I think loop and Android APs are similar. I don't like somebody asked me like, are you going to compare the two? And I was like, that's, that's just there's just no reason to do that. You know, right. They're not the same thing.
Edward Robinson 1:57:13
Yeah, they each have like pros and cons of like, tighter control versus more, more effort and work to set it up. And right. Yeah, no, there's a complete trade off so many different things. Yeah,
Scott Benner 1:57:25
if we've only had five if it if you could target a little lower. And if it would be more aggressive on a rising blood sugar, I think, you know, we would have held out until the phone was available. And the problem is that art is a young girl, she's, you know, she's hormonal. And we were having to leave the algorithm to stop some of these big rises. But having said that, I do that, too. It's not like loops was magical with the blood sugar's I would say that the biggest difference is that loop holds Arden steady at a lower number. Like that was it especially like overnight and stuff like that? Overnight? Other than that, 85 Yeah. Other than that, they were very similar for us. You know, yeah. So, you know, but needing to
Edward Robinson 1:58:15
carry around a phone and an extra controller. I would imagine it would be a pain
Scott Benner 1:58:20
when I opened the Omni pod five box, and the controller came out art and said, and this is a quote, what is that?
Unknown Speaker 1:58:28
And I said,
Scott Benner 1:58:31
that's the controller. And she goes, Oh, no, no. I said, No, we're gonna we're gonna use this and we're gonna try it, you know? And, but yeah, it was just, she was like, I don't want to carry another thing. And I was like, okay, yeah, like, and that was a big deal to her like, so I'm like, Alright, so
Edward Robinson 1:58:46
yeah, totally. Yeah, totally get that. So I just carry my phone, my wallet, and two glucose tablets in a little like, pill container that I found on Amazon. And that's all I carry with me.
Scott Benner 1:58:59
That's amazing. Yeah, that's, that's what you're looking for. You're looking for less impact. They're all gonna get there. I mean, I can't tell you. I have no trouble suggesting on the pot five to people. I think it was really, it was terrific. It just was slightly less customizable than I was accustomed to. And she was carrying another thing. So who knows if that app was already on her, like ready for her phone? She might not have ever brought it up. You know? Yep. So because she doesn't use the functionality and on the in loop. Like, you know, it's not like it's not like artists like oh, I should probably change my insulin sensitivity because it's after my period. I tell her that's what's happening. And she goes Oh, okay. That's why I loved what you were talking about so much. Because as interactive as Arden is she's still not she's not that person. You know what I mean? That if she becomes an adult, I get less involved. I imagine that means her blood sugar's are gonna go up if she doesn't have something that's going to think for like that.
Edward Robinson 1:59:56
Yeah. Anyway, and it's, it makes so much sense for the algorithm to just do cared for you. It does the me it has all the data. Why can't it do it? Yeah,
Scott Benner 2:00:04
especially after talking to you it does to me so Alright, let me say thank you very much I appreciate you doing this
of course, we're gonna thank Edward for spending so much time explaining all of this to us. And I actually spoke to him last night for a second his a one C last one 5.5 And this episode was recorded six months ago. So it seems like things are working pretty well for Edward and his choice of insulin delivery. Or the thank us Med and remind you that we get our supplies from us Med and you could to us med.com forward slash juice box or call 888721151 for links in the show notes links at Juicebox Podcast a US med touched by type one and all of the sponsors. Since this one went long, I'll just tell you check out the private Facebook group where you can meet people like Edward Juicebox Podcast type one diabetes on Facebook private group. You'll love it. And goodbye. Thanks for listening. I'll be back very soon with another episode of The Juicebox Podcast. It won't be as long as this one
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